tag:blogger.com,1999:blog-8339727206797894792024-03-16T13:51:11.966-05:00Carolyn's Sick JourneyLiving with chronic illness - Mast Cell Activation Syndrome - Chemical Sensitivity - Chronic Intractable Migraine - Ehlers Danlos Syndrome - Dysautonomia - Chiari Malformation - Cranio-cervical Instability - Functional cranial settling - Cranio-Cervical Fusions - Retroflexed Odontoid - Occult Tethered CordCarolynhttp://www.blogger.com/profile/15199063695264942837noreply@blogger.comBlogger331125tag:blogger.com,1999:blog-833972720679789479.post-21814563101872547032024-01-22T22:31:00.000-06:002024-01-22T22:31:16.673-06:002023 Recap<p>The never-ending downward spiral</p><div dir="auto"><div dir="auto"><br /></div><div dir="auto">I pieced this together from a few different journal entries.</div><div dir="auto"><br /></div><div dir="auto">I wrote them throughout December, and there have already been some changes, as the situation is ever-evolving. But this is what I have to share today.</div><div dir="auto"><br /></div>I was looking through photos, and what a bizarre and evolving year it was. First with the hugely swollen knees and the start of the massive atrophy and cachexia (severe and rapid unexplained weight loss). Then the pink spotted and streaky rash that seemed like psoriasis to go along with the hugely swollen knees. And then the right hand joined in with swelling and horrible pain first followed by major atrophy and deformation, to be later followed by the left hand in the same way with major loss of function, although it has not progressed as far yet. The loss of tolerance for car travel leading to progressions. (I left the apartment four times this year, the last time being April 8th.) Losing my ability to walk without a walker after a single car ride, never to be regained. And then I think Covid. And with Covid came the flare of neuromuscular issues. It wasn't my first episode. My previous episodes were mostly facial, particularly severe eye drooping. I have had flares of this on and off for years. Loss of tolerance for sound for 2 months. Or more. Still not great--easily overwhelmed. But then with Covid came the severe dysphagia and eating and swallowing issues. Limited to a few pureed foods. Severe episodes of paralysis. Incontinence. All neuromuscular issues. Daily episodes of prolonged unconsciousness. And all along the way here, my left nipple developing severe pain and sensitivity, requiring months of being bare chested until an ingenious solution was found to protect my nipples, both of which now cannot be touched. Then things have evolved more. There's been no more psoriasis like rash (although it left very rough skin behind), but instead different types of rashes and severe, severe itching as I developed intolerance to all types of compression (bras and knee braces) and a couple more foods. Itching so severe that at times it only let me sleep an hour a night. Once a rash starts, it never really goes away. The rashes from my knee braces and my bras have never left. They flare up whenever they want. And the skin never returned to normal. Same with injuries. They never really heal. Further atrophy and weakening. The loss of tolerance for knee compression causing severe progression of my knee deterioration. I was having prolonged loss of consciousness daily, up to 3 hours. Late summer loss of access to my recliner for rest. That, along with no longer being able to rest in bed, left me staying awake 20 hours a day. In September, it appeared that I wouldn't survive due to the continued weight loss and neuromuscular progression. But things took a turn. Regained access to my recliner with cooler temperatures. Neuromuscular issues gradually lessened. Although variable levels of daily paralysis and fatigue-based weakness continues. And the atrophy is permanent. The massive edema in my feet spreading up to my calves. And then separately, the developing of the peripheral neuropathy burning in my feet. And then that continued progression of degeneration and deterioration of my musculoskeletal system. Muscles wearing away further. Bony deformations. Progressive joint pains. And then severe pains through my arm bones. Around October or November, I reached the point of screaming out in pain throughout the day everyday from the most basic movement or touch. And then the restricted movement, particularly of the left arm. There is stiffness in many areas, but the left arm is totally different in that it never loosens up enough to bend to touch my own head or face. That has also been progressive, and is associated with severe pain and ridiculous limitations. Initially arm pain with weight-bearing, then pain with holding anything, and now the pain can be severe even just holding my own arm up or the slightest touch. And then the beginning of those same pains in my right arm, which threatens my ability to do anything myself if I can no longer reach my own face or head with my hands (feed myself, dental care, etc.) Or even just the loss of the remaining function of my hands, which is extremely minimal. The severe pain of my back pelvic joints as the atrophy/arthritis progressed, leading to severe pain with sitting and lying down and near impossibility of tolerable positioning and an unbelievable, necessary bedding setup with a hole cut out for my sacrum. This necessitates that I stay in one position at all times, which is also unavoidable since I am unable to move during the night. Bed became a torture. The kyphosis in my spine worsening and becoming more symptomatic with tingling and needle-like pains. I am permanently hunched. Insomnia due to all of these pains and the impossibility of getting comfortable and the weakness making me unable to move in bed. Severe adverse reaction to the final medication trial, from which I never seemed to recover. No more prolonged loss of consciousness. Instead, inability to rest due to severe symptoms when reclining. Losing more and more independent abilities along the way, leaving very few left, and those are threatened by the loss of the use of my hands and arms. Struggling with bowel control due to atrophy of gluteal muscles and need for laxatives and a stretched out rectum. And all all all this time, the severe migraines and trigeminal pain and bladder pain and worsened insomnia, all associated with my progressive reaction to fragrances and inability to avoid them, even in my home. Unable to get in and out of bed myself since September. Eight hours of caregiving a day. But the impossibility of extra caregiving due to the insane level of fragrance sensitivity. Wearing a respirator in my home just to try tolerate existence and allow rest. And then the loss of tolerance for showering. Since it leads to weeks of insomnia and itching and agitation. So I just stopped. One finger joint totally fused bent. Large deformation of my sacrum. It protrudes grotesquely, causing excruciating pain in any sitting or lying position, worsening the insomnia once again. Suffering from major malnutrition and persistent BMI around 13, surviving off only a few foods. The pain in my hands and arms so severe that I struggle mightily to use my walker, since I cannot put the weight through my hands. I struggle the same with trying to stand up and sit down, since I am forced to put the weight through my hands and arms, but they can't take it. They did controlled burns nearby for 4 days that filled my apartment with smoke. That was a sensitizing event for my chemical sensitivity. There were other sensitizing events after that. During December, my sensitivity to fragrances worsened greatly, eliminating even my bedroom as a safe space. And even the new, very expensive air purifiers stopped protecting me and started exacerbating my problems, leaving me defenseless. So fragrance exposure is daily and severe, causing complete agony and more agitation and insomnia. Having to sleep in a respirator. The severe trigeminal pain and bladder pain are constant now with this constant exposure to fragrance. Worsened insomnia. Having to air out the apartment with frigid air whenever possible, just to be able to tolerate the space for a few hours.<div dir="auto"><br /></div><div dir="auto">Weight returned to its lowest point. (Jan. 2024)</div><div dir="auto">My toes are beginning to atrophy, and are barely attached internally. They offer no resistance to bending in any direction and hyperextend at rest. (Jan. 2024)<br /><div dir="auto"><div dir="auto"><br /></div><div dir="auto">I'm sure I'm still missing plenty of significant issues. But I figured I would write them down while reflecting on the joys of the year.</div><div dir="auto"><br /></div><div dir="auto">None of my pre-existing diagnoses explain large parts of this year. I haven't had medical care or testing in years. I finally have medical conditions that are blatantly obvious and glaringly visible. Although so much of it remains invisible, like the horrific pain due to fragrances and the fragrances themselves, since I react to levels that others cannot detect. There is no pre-existing explanation for the musculoskeletal breakdown. Not for the cachexia and the massive atrophy and the shooting pain through my bones and progressively restricted movement. The EDS plus the arthritis plus the atrophy? But why the atrophy? All because of MCAS-induced malnutrition? The bulk of the atrophy happened before any change in diet became necessary. But why the bone pain preventing use of my limbs? And grotesque deformations.</div><div dir="auto"><br /></div><div dir="auto">I did have a batch of blood work done (at home) that showed significant malnutrition, severe anemia, many severe deficiencies, but also extremely high markers of inflammation, reflecting the inflammatory process taking place in my body. Just not being able to identify it specifically. Likely a progressive arthritic condition and a variable neuromuscular condition.</div><div dir="auto"><br /></div><div dir="auto">I began the year living independently in my own way, and ended up relying greatly on my caregivers for practically everything. Gustavo, Mom, and Andy. And they are strained very thin to say the least. I owe my life and my every day to them, and the pressure of that dependence is extremely high. As well as imposing a very strict lifestyle. It is an enormous burden as well as a balancing act that is not sustainable.</div><div dir="auto"><br /></div><div dir="auto">Very brief list of things I cannot do independently:</div><div dir="auto">Get in and out of bed</div><div dir="auto">Move in bed (arm movement varies)</div><div dir="auto">Brush my hair, put in a barrette or a ponytail</div><div dir="auto">Touch my left ear or the left side of my face or head</div><div dir="auto">Touch my right chest</div><div dir="auto">Wipe my armpits/apply deodorant</div><div dir="auto">Change my clothes, any of them</div><div dir="auto">Squeeze toothpaste onto my toothbrush</div><div dir="auto">Turn twisting light switches</div><div dir="auto">Take a sweater on or off to adjust for temperature</div><div dir="auto">Zip most sweaters</div><div dir="auto">Write</div><div dir="auto">Type</div><div dir="auto">Hold up my phone and type into it</div><div dir="auto">Plug things into chargers</div><div dir="auto">Plug and unplug headphones</div><div dir="auto">Hold my phone with one hand</div><div dir="auto">Hug</div><div dir="auto">Cuddle</div><div dir="auto">Be touched mostly</div><div dir="auto"><br /></div><div dir="auto">Early in the year, we were trying to find a safe home to live in, but the house shopping process progressed my condition in just a few trips out of the house. And it also became clear that there is no such thing as a fragrance-free house, just like there are no fragrance free caregivers. And with that, my fate was sealed of never leaving this apartment. There is no hope for escape.</div><div dir="auto"><br /></div><div dir="auto">I did get brave and try treatment this year. It failed spectacularly, and I never recovered.</div><div dir="auto"><br /></div><div dir="auto">My condition is clearly progressive and degenerative. The heat and intense fragrances of summer leading to almost no sleep or rest was disastrous. As is the loss of access to clean enough air and no safe space. Many of these problems are irreversible, too far gone. The future is extremely bleak, and it would have been better off if I hadn't survived this year. Better off for everyone, as my care is too much. And even as the need for care increases, the access to care does not. And because no one should have to suffer this much agony. And all without access to medical care or medications that could relieve my symptoms or treat anything.</div><div dir="auto"><br /></div><div dir="auto">Another loss was my ability to communicate much. My days are packed with a strict schedule of survival. And with enduring the unendurable. There were months where I suffered hours of prolonged unconsciousness. But then the insomnia came, and it's even worse to not be able to rest. But there's just no time and no cognitive and emotional energy to have simple conversations most days. My last day of Spanish class was the day I was diagnosed with Covid. I'm bilingual now. But I really stopped being able to communicate with anyone outside of my inner circle after that. I'm really not up for phone calls barely at all. Obviously, I stopped blogging. I've still been journaling with voice to text, but I don't publish it anymore. I have my reasons.</div><div dir="auto"><br /></div><div dir="auto">But I know I have had some very loyal and supportive readers and friends for so many years who deserve to know about my massive decline. So I am posting this so you know what's up. Sorry if there are typos.</div><div dir="auto"><br /></div><div dir="auto"><br /></div><div dir="auto">Photos are mostly legs and hands, because the rest involve my bare, skeletal, spotted torso.</div><div dir="auto"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoT1mCGWIvwzHtqngOOkJZic7XNL3kFD_k33YLuJxkC4OrOMRqmV541HpDoDy133L-eOxJCW1AuC1XuQ_AvSy09jM3kc2Sl06hVkf0yohjQ6J8-EdzvG137nBEMqQezciunJH5znVfYJIZK3t3KOpOxypASUtan1K8sd5f4xf3ulBz5TzvL0f5tsu5Cnc/s4032/20240122_191608.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoT1mCGWIvwzHtqngOOkJZic7XNL3kFD_k33YLuJxkC4OrOMRqmV541HpDoDy133L-eOxJCW1AuC1XuQ_AvSy09jM3kc2Sl06hVkf0yohjQ6J8-EdzvG137nBEMqQezciunJH5znVfYJIZK3t3KOpOxypASUtan1K8sd5f4xf3ulBz5TzvL0f5tsu5Cnc/s320/20240122_191608.jpg" width="240" /></a></div><br /><div class="separator" style="clear: both; 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Although this is my first time on a computer in weeks, and I can tell that editing will have to be minimal. Pressing keys is much harder than I remember,</p><p>I have a lot of notes saved, because it's been a dramatic time. They're disorganized, because I have them saved on different places in my phone. And Mom wrote some of the acute Covid updates. So I'm sorry if it's repetitive. I've been trying to edit.</p><p>June 26 coughing, coughing, coughing. Best explanation is the horrid air quality. I ventilated several times today, not really knowing how bad it was, and not feeling like I had much choice. My Monday night shower made the coughing worse, but it was all day. No daytime AC. GF biscuits. Before the shower, I was already coughing. Plus, my temp was 99.9 and my resting HR was 115. Then the shower made it worse. The shower hurts so much. And it feels so perilous getting in and out. But I just end up choking by the end. I'm still choking. Why was my cough so much less for a few days? Also, my left elbow is worse today. Getting bubbles popping. Nothing to compete with my knees, but it hurts. I still rely on my left arm for so much.</p><p>Otherwise, just worried for my honey. Second full day of quarantine. We aren't in total agreement for when it would be safe to come home, but he's symptomatic right now, so not time to decide yet. It is certainly scary to think about possibly contracting it, given the level of suffering in my everyday life. I also couldn't endanger my Mom.</p><p>But I am requiring so much help from Mom and Andy. I just think we need to be more than certain before reuniting. I read maybe two negative tests 48 hours apart after symptoms end. I don't know if I'm being unreasonable. It's just too terrifying. It is so dangerous. I mean, I've already been exposed. I don't know. I want to be safe but reasonable. Am I clear from already being infected?</p><p>I stayed up so late last night. 6:30. I posted in my blog. I hope to do better tonight with bedtime, but who knows. Not too likely on a shower night. My body doesn't calm well. Fever up to 100.4. And the coughing is so bad. Damn, another bed time alone. So difficult.</p><p>June 27 Welp, I've got Covid. I spiked a fever around 5:00. 101.3, 102.5, 103, 103.4. It climbed over several hours. It's staying there. I tested at 9:00pm. Interesting symptom for me was that my GI got inflamed, making it come to a stop and making me lose bladder control all day. An inflammatory symptom for me. Otherwise, I have the fever chills and the cough and the massive headache. And of course, I lost my appetite with the fever and the swollen GI tract. Not sure how this will go. The good news is that G got to come home to me tonight, since we're both infected. Bad news, he and his stuff were scented from the hotel, and I didn't realize in time. And there's no way to air out since our AQI here reached 248 today according to my weather app. The scent hurt my head extra. Don't know what else to say. So much pain and dread.</p><p>We have hotter days ahead, with no access to ventilation when it's all smoky out there. That will make everything even harder. Feels like my AC isn't working. But no, it's me heating up. Can't believe I exposed my mom today. Unmasked and closed in. I must have been in denial, but it is truly hard to differentiate from normal tortures besides the high fever. I feel so much guilt for exposing mom and Andy. SO glad G is here. He'll be working virtually from his folks' place this week. He felt 90% recovered today, day 3, although he still tested positive.</p><p>I wonder how and when I'll be able to sleep. Obviously, there's nothing to lower the high fever. I know my system is mounting a strong response, so maybe this won't go on as long as I fear. I'm also not sure when my GI will wake up. Will I vomit? Or have to empty manually? Both feel possible. Or all the extra magnesium could kick in at any moment. I sure feel like I could puke.</p><p>I had to busy myself making magnesium capsules tonight. I was low, and I need a lot, and I don't know how much worse I'll feel tomorrow. So I got it over with. I also don't know how to say my first day of symptoms. It kinda snuck in with an elevated fever last night, along with my worst day of coughing...but the fever wasn't so high to suspect infection. Heart rate is 120 right now.</p><p>I know some people would like to read this daily updates . I'll try.</p><p>3:30am. Got up for more loss of bladder control. Then a small bm. Abdominal cramping now. All this bowel and bladder activity will keep me up. Took temp. <b>104.5</b>, and it feels like it. For real. Don't think it's been this high before.</p><p>4:00 peeing every 10 minutes right now. So I haven't been drinking. Great.</p><p>4:50 Still extremely overactive bladder. I'm afraid to even try to sleep, because I'm afraid I'll be incontinent in bed. This wasn't on my list of expectations. My head about to explode was to be expected, but still horrendous. Temp holding steady at 104.</p><p>How the hell will I sleep with the bedroom heating up into the 80s as it always does? I am roasting right now. I can't take it. And then with no fresh air access tomorrow, I won't be able to cool the bedroom back down.</p><p>5:45 After a night with pretty mild coughing, I got set off walking past the AC to get an ice pack, and now the cough is aggressive and violent. Bowel and bladder issues continue. I can't imagine trying to sleep in this state.</p><p>6:15am I don't think I'll sleep.</p><p>Mom's first email update</p><p>Subject: Carolyn update - Wednesday (7/28)</p><p>6 PM</p><p>I went to see Carolyn at 4, because I couldn't stand it any longer.</p><p>She was still sleeping, but got a few words out. </p><p>She was up all night with bowel and bladder distress. No appetite, and not drinking. I'm very concerned about her getting dehydrated.</p><p>I called her at 5:45, and she couldn't talk, because it makes her cough too much.</p><p>She was trying to eat her oat biscuits, and I encouraged her to drink. She said she has no appetite and her throat and stomach hurt so much. </p><p>One strange, but good thing, is that she said her joints are doing relatively well.</p><p>Getting in and out of bed is easy (it usually takes about 5 minutes). She said she has more strength. She believes it's because her immune system is busy with other things...</p><p>That's what I know for now. I'll update when I know more...</p><p>Love, Jeannie</p><p>My June 28th notes</p><p>What a horrendous night. I didn't get any sleep until around 8:30, but woke up about 30 minutes later. Slept in fits and starts, and finally got some decent sleep from 2-4pm. I couldn't really get up until 5:30ish. I'm trying to eat and drink despite the lack of appetite. I can't speak today without coughing. The cough became wet today. My throat hurts. Obviously, my head is exploding.</p><p>My mouth tastes disgusting. I can't stand it. Bitter and metallic. Fever hasn't been below 102, but is climbing for the day/night. Up to 103 already. I can't stand another night like that. I was at 104.5 for many hours. Unbearable.</p><p>Bowel and bladder is slightly better today. I've had movements, and I'm not peeing constantly. My abdomen is still sore. I think I should skip magnesium completely today, but I sure don't want to overdo it. It's so easy to yo yo.</p><p>I can't tolerate any sound today. So much for the mindless tv I had picked out. And my audiobooks. Somehow, I got locked out of the Libby app, but I guess it doesn't matter since I can't listen.</p><p>The fascinating and helpful thing is that my joints seem to be on hiatus from torturing me. I'm walking easier. My hands are stronger. And I can get in and out of bed like it's nothing. Proof that it's not strictly weakness. I still have strength. It normally just hurts too much.</p><p>Ugh, nausea is kicking in. This has been the slowest night followed by the slowest day.</p><p>Brainstem aura coming on. I guess it's been here all day with the the sound sensitivity.</p><p>When I say I can't speak, I mean not a peep. Violent, wet coughing that goes on and on.</p><p>It was definitely an all day brainstem aura. I ended up in and out of consciousness and then paralyzed from about 9pm-12. Which means I really missed out on seeing G. He was home, but he had to leave me alone to get through the nightmare. So then, I gradually was able to move, and there was a lot to get done. 1) I had not eaten much, so I had to eat a whole meal. It was late, but my day started extremely late and will probably end extremely late. 2) I had to cook. A lot. G held out as long as he could, all conversation through text since I can't speak. But I had to do a lot of cooking myself. How easy would it be if I could just eat convenience food? Instead of cooking up a huge batch of quinoa from scratch. It's a very long process. A couple hours from start to finish. G is still testing positive</p><p>All food tastes like garbage, so that's another challenge.</p><p>My temperature always drops when I lose consciousness. I was at 103. Don't know what I dropped to, but it's climbing back up.</p><p>The next two days are 90°. That will be unbearable. Especially whenever they scent the lobby. Seriously, why does it have to be hot weather, terrible air quality for no ventilation, scented building, all while barely breathing with high fever. I don't expect relief when it's that hot. I will likely be sealed in the hot bedroom, which sounds impossible with this fever.</p><p>I'm afraid my GI is yoyo-ing. But at least that means my bladder is a bit better for now.</p><p>I'm so scared of the coughing being triggered, because it goes on and on so aggressively. It's just a really wet cough now. And it seems to strain different muscles than my previous cough. Less ribs and more belly.</p><p>It's only 2:15am. I wonder if I'll be up just as late or if sleep will come sooner. G is getting up at 7, so that would be pretty convenient if I got sleepy around then.</p><p>My torso has been itchy today. I believe that's a mast cell response to the heat of the fever.</p><p>Well, the weather apps don't agree on tomorrow's temp. Maybe it won't be so bad. Warmer the following two days. But there will be storms.</p><p>My vision is flickering tonight. Very weird. My head pain is getting worse and worse. Vertigo. Oh, the storm is going right now. Surely, that is messing with me. My balance has been bad all day. Migraine city.</p><p>3:38 Feeling like I could pass out again. A full day of silence. Such a long day. Wish I could just put on a show or listen to something. My body is aching so badly now. And my bladder hurts despite function being okay-ish.</p><p>June 29</p><p>Mom email update</p><p>Hi All,</p><p>I stopped by the apartment at around 11 this morning. </p><p>I was surprised and happy that Gustavo was home. </p><p>He was leaving for his folks house to work remotely at around 11:30. </p><p>Not too sure about how Carolyn's night went...Gustavo was home and he got some much needed sleep, as he is still recovering. We know that she still had a high fever last night (103 again), and she told me that her cough was getting more congested. Her throat is quite sore, and her stomach hurts. Talking triggers her cough, so all she can do is text, when she's up to it.</p><p>Carolyn thought she would be watching/listening to a lot of mindless TV shows, but she isn't. She can't stand any light or sound. So the time is just crawling by. Last night she got another brainstem aura and passed out...I don't know for how long.</p><p>Love to all, Jeannie</p><p>6:30 pm update on Carolyn ~</p><p>Terrible night and day...</p><p>Symptoms from our texts this late afternoon:</p><p>She woke up around 4 pm. </p><p>Extreme exhaustion - almost no energy</p><p>Overlapping migraines with periods of unconsciousness</p><p>Temp of 102.7</p><p>Intense muscle aches and sore throat</p><p>Cough feels like she's drowning.</p><p>Can't talk, very hard to even text</p><p>Corneal abrasion, just because</p><p>Weight down to 83, even though she's doing her best to eat and drink. </p><p>GI symptoms persist</p><p>Gustavo is probably home by now, so that's a great thing. </p><p>Her joints are still amazing! She can get her knee braces on like they were socks! </p><p>Such a strange phenomenon! Nice to have a silver lining. </p><p>Hoping for better news tomorrow...</p><p>Thanks, as always, for all of the prayers and concern. </p><p>Love, Jeannie</p><p>My notes for June 29:</p><p>I wrote this over a few hours.</p><p>2:00am Writing while I feel coherent. I slept. A lot. Maybe 10 hours with only one interruption. But waking up and being able to get up are different. I'm like the dead. Negative energy levels. I'm pretty sure I slept more after my initial wakeup at 4:00. Got up at 6:00pm. So beyond grateful that Andy fixed my bed literally days ago. It hasn't felt this comforting in months, at least.</p><p>Muscle aches are intense. Overlapping migraine pains are intense. Add a vestibular migraine to the list today, along with the ocular, and the brainstem aura. All layered. So my balance sucks, and I get knocked over by vertigo. The walker is a lifesaver for that. But G too. He has caught me numerous times. I'm basically drunk. 😆 It feels better not to move, but I can still get struck by vertigo. The brainstem aura is there always, as evidenced by the sound sensitivity that crosses over quickly into loss of consciousness. But the ocular and vestibular are more prominent today. My head and eyes hurt so so much. And my neck is in full spasm. Pain numbers are not my favorite, but I'd say head/eyes/face has been 7-9. Body aches 7-8. Throat is just like post-tonsillectomy when I awaken, but it eases up.</p><p>It was another practically silent day. I tried to listen to a new audiobook for 20 minutes, but that wore out my brain. So more silence. That makes time crawl slower than a snail.</p><p>I woke up with one corneal abrasion and developed another during the day. The tearing eyes and dripping nose trigger the cough. And they just hurt. My lips are cracking too. So I buy into Mom's theory that I'm dehydrated. Mom is always right. Never doubt that! I have made great strides with this today. Probably drank 80ish ounces, and that's in only 7 hours.</p><p>The taste. The taste is disgusting. It is so hard to eat unseasoned food and drink water. Water is the grossest of all. It's the exact disgusting bitter garbage taste amplified to the max. (I have more explicit descriptions.) And yet I'm drinking now. The pain of corneal abrasions is pretty convincing. But it does feel hard on my bladder to keep getting full. It's already so busy. The most delicious thing I've found (out of so few options) is baking soda water, but that is medicinal for me. I can't drink extra.</p><p>Talking is still out. When G is home to help me, I text him everything. Although I got away with a few whispers today. Barely.</p><p>My fever hasn't been in the 104s since the first day. Today, 103 was the peak, I think. I only checked twice.</p><p>Bowel and bladder continue to be abnormal. No incontinence today. But still trying to find stability. I'm trying really hard to maintain my normal level of roughage to help with digestion. It is so difficult. Breakfast was at 6pm. I ate all I could until about 12:30am. What else can I do? I'm stuffed. The food tastes disgusting, but I gorged myself anyway. Yes, I've inevitably lost weight. I assume most people do with a viral illness. It's just more critical for me. I believe as soon as I regain energy, schedule, and appetite, I'll quickly return to my impressive pre-Covid weight. 💪</p><p>Although, I swear, this disgusting taste will be a struggle. I read it's a neurological symptom (big surprise), and that it doesn't always leave quickly. I also believe my sense of smell is reducing tonight, which is confusing as hell, and worrisome. It's my essential self-protective superpower.</p><p>The cough. The cough is very wet. Very productive. Painfully so. When the coughing is prolonged, it feels like I'm drowning.</p><p>There's been an interesting trade-off. With my immune system so busy, it's forgetting to torture me with my joints so much. When I have the energy, I'm strong and mobile in ways I haven't been. The trade-off being the muscle ache that kicked in. It's reduced my impressive regained mobility a bit, but I'll take it. My hands are stronger. My knees bend and straighten further. Legs are stronger, though so achy. I'm exaggerating, of course. Still using my same aids, mostly, but relying on them less. But any improvement is surreal, and welcome to stick around. 🤞🏻</p><p>Good god, this migraine pain. None of this is really surprising. This is pretty much how I would have expected it to play out. A few curve balls, but pretty much as one would expect based on my body's usual bs.</p><p>I'm glad my system is still fighting hard with the 103 fever. I guess I've just started day 3. Apparently, I have no sense of time. There could be a long road ahead, but I somehow hope not.</p><p>4:00 Head/eye pain unbearable. Bladder overactive and deserves its own pain number. About a 7. I think I drank 96 ounces today. But my eyes are sandy, and my lips are cracked. Adding more salt to the menu tomorrow. I wonder when I'll sleep. Not excited for the hottest day tomorrow.</p><p>Mom email update July 1</p><p>Early Saturday morning updates:</p><p>Sorry it's taken me so long to write another update on Carolyn. I've come down with Covid myself, so I have had a distinct lack of energy and a whole mess of other symptoms. </p><p>Here is an update in her own words:</p><p>4 AM </p><p>I've gone noseblind, and it's already had devastating consequences. Basically, sensitization to the lobby fragrance I was obliviously exposed to day and night yesterday, so that today I can't even stand a single whiff of air outside of the bedroom. My head explodes instantly. So I've stayed in the 84 degree bedroom and cannot cool or escape. The non contaminated air has improved my headache but the heat is unbearable. Heart rate 140.</p><p>Took a turn. Severe coughing/asphyxiation at 8:53pm. The worst was 3 or 4 minutes of desperation and pulling every muscle in my neck and throat and tongue. The mucus continued flooding my airway, and then seeping into my airway for hours. Coughed so hard that some vomit came up. G stood by my side all along. My throat is shredded. And my swallowing coordination was gone. I couldn't even get down sips of water those hours. Airway is still not calm. Mucus keeps coming.</p><p>Then, around midnight, the feeling of starvation overtook me. I only cared about eating and drinking, panicked. So I did. I ate and drank for over 3 hours non-stop. Small bites. So careful. Plenty of choking. But in the end, I drank and ate quite a significant amount.</p><p>No idea how/when I'll sleep with all this digesting, but I never want to feel that starvation panic again. I was severely undereating with my reduced time and energy available.</p><p>Can't live with this new fragrance sensitization. Nowhere to brush my teeth. And no AC access. And of course the shitty air quality means no window opening. And it's hot. Just can't win.</p><p>That's what's new. Been rough. Now I can't have audio, back to zero speaking, and my hands are too dead to play games on a screen. So I'm literally just sitting here.</p><p>Hands done.</p><p>6AM </p><p>Still up digesting.</p><p>I think the choking episode was not specifically Covid. It most resembled the "swallowed down the wrong pipe" dysphagia episodes I'm known for. And I was dumb. I spent an hour and a half eating lunch, and throughout lunch, Gustavo and I were talking. (Eating must be silent!) Despite some progressive coughing. He was trying to entertain me and help me get past the sensation of being completely stuffed despite needing all that food and more. I was croaking back to him quietly, maintaining a conversation. And I think all the poor swallowing led to some stuff getting lodged and then suddenly choking me a bit later. And then my body's usual overproduction of mucus, but the worst I've ever felt.</p><p>* * * * *</p><p>Those two messages were from early this morning. I really wish I could go over and be with her; keep her company and help her do things, but I'm so sick right now, that I would not be helpful at all. I went to the urgent care center this morning, and started on Paxlovid at noon, so I hope that will do some good. I wish Carolyn had something she could take for the myriad of horrible symptoms that Covid brings. </p><p>Thanks, as always, for the many prayers and the love sent our way.</p><p>Love to all, Jeannie</p><p><br /></p><p>Sunday, July 2</p><p>Where we are today:</p><p>Extreme swallowing difficulty. Will need to spend potentially 6 hours a day silently chewing and swallowing to meet needs. Today, the window I had was 5pm-12am. Breakfast 5-6. I have been eating lunch constantly from 7:15pm-10:15pm, and have not completed it. I am starving, but do not have the swallowing capacity to eat all I need even if I don't take any break from chewing and swallowing, but my jaw and throat are exhausted. God, I want to get careless and take big bites, but the choking spell yesterday felt nearly deadly. I've just been sitting here alone for hours trying to focus on swallowing properly.</p><p>Sleep deprivation. Coughing and choking kept us both up all night. We mostly slept 10am-2pm. So POTS is bad today. And sheer exhaustion. I can't wait to rest.</p><p>Fever dropped a lot. 99.8. That was probably my temp before Covid. Along with it, many changes. Mobility, joint pain all much worse again. Weakness. Knee braces are very difficult to put on. Phone almost too heavy for either hand. Although I can still do my own ponytail for now...barely</p><p>Then, my anosmia and altered taste have been shifting here as I write.. I'm starting to smell faintly, and food is tasting more like food.</p><p>GI distress from the literal constant intake of food. Still so hungry as I keep eating lunch. Looks like I will finish at 10:20pm. Then what? Just keep chewing more and more food without a rest?</p><p>Either way, it will be confined in this bedroom until my sense of smell is strong enough to protect me. Also, being able to air out used to resolve this smell for me quickly, although temporarily. But no fresh air access.</p><p>10:25pm Gonna go brush my teeth and then dig into the next interminable plate. My jaw will never survive this. My poorly aligned molars ache. But I'm so hungry. When can I rest?</p><p>The dysphagia is not new, just newly worse than ever. With graver choking spells than ever. I feel like I use up more energy than I can take in. When can I rest? Not tenable.</p><p>11:15pm Next meal started. Can't be full-sized, but it's quinoa, potatoes, and artichokes. I'm not sure I can eat all this, since I plan on biscuits afterwards. All four.</p><p>I feel so much like I'm being punished, forced to sit here and eat literally all day without rest. In this uncomfortable chair. With my hubby right next door ready to make pleasant conversation or watch a show together. Instead. Sit and chew and swallow every conscious hour in silence. He says it won't stay this bad. He's smart.</p><p>Taste and smell have evolved in my hours of sitting here. First scent: disinfectant smell on the tissues in a fresh box of Kleenex. Next was a possible whiff of the lobby scent in the living room plus the mold in the bathroom. Taste...food and water started tasting less like bitter garbage.</p><p>Finishing this food portion at 12:05. (or close enough) Short break before all 4 biscuits. I feel stuffed and exhausted but still hungry. Still feeling some pieces of quinoa lodged around that could make me cough if I talk.</p><p>Well, I got quite faint here for a bit and couldn't stand up for a while. Sleep deprivation or digestion work, or calorie deficit, I don't know.</p><p>Came so close. I was able to get out of the bedroom with some outdoor air first! I ate my biscuits silently. At the end of biscuit #2, I had the horrific coughing/choking/gasping spell. It was terrible. So scary. I did prove the importance of spitting out everything during an episode. You can't try to swallow during all that choking. After 6.5 hours of eating today, I had to call it right then at 1:25am. I wanted to be done with everything by midnight, but it proved impossible. And I didn't get to finish eating. So I ate 4 biscuits, full lunch, kinda half dinner, and then 2 biscuits. So despite my best efforts and full day sat in the dunce chair, I still got 75% intake. At 5am, I'm still hungry. I can't imagine how to keep this up. It feels like it gets easier until the next big choking spell. Then back to impossible. I can't possibly give more than I gave today. The only way out is for the dysphagia to improve so I can eat faster, if still in silence. Not sure when I'll talk freely again.</p><p>I am so glad G is home another day to help me through this madness, especially the moral support and sense of safety. It is so invaluable. And tomorrow is cooler, so at least the scenery should change to the living room, which will help my sacrum and full spine enormously.</p><p>July 3 Mom update</p><p>Here's the latest update (Monday morning)...we're going in the wrong direction 😑</p><p>* * * * *</p><p>Last night was another long sleep.</p><p>Wakeup was shockingly painful. All previous pains have returned and worse.</p><p>All mobility has regressed and worse.</p><p>I barely moved without Gustavo's help. I couldn't get the sheet off. I couldn't sit up. I couldn't get dressed. Left hand and arm are worse than ever, losing my best (only working) limb.</p><p>I ate my biscuits silently (90 minutes), then brushed my teeth. Then, we prepared a puree. I couldn't work the blender or empty the blender or do any of it independently. We pureed quinoa, potatoes, and carrots. It was revolting to me. It was a small lunch portion and took 2 hours to eat. I ate it all , but I didn't get a second portion due to the late time and intense exhaustion.</p><p>I went to eat my biscuits and made it through 3 of 4 before a choking spell made me stop, despite the lack of talking.</p><p>Now, it's 4:05am, I am hungry again, but I know better than to eat so late if possible since that keeps me awake even more hours, making the next day even later.</p><p>I had a spell of passing out around 2am, I think. Headache spiked afterwards. (Migraine with brainstem aura) Heart has pounded nearly all day. The exhaustion is intense. Temp 101.8 the one time I checked, I think.</p><p>Another secondary migraine hit, this one with visual aura and much more intense pain.</p><p>Taste and smell are evolving. I can talk a bit in the few minutes between meals, but I cough more. I'm sure using no AC helped with the coughing, but I've got to run it tonight. I am so grateful to have G home with me for two more days. Cannot imagine it without him.</p><p>* * * * * </p><p>Wednesday, Gustavo will have to go back to work, so I will have to be much better. </p><p>Carolyn needs so much help. Thank you for your continued prayers.</p><p>Love, Jeannie</p><p><br /></p><p>Monday Night 7/3</p><p>Extreme exhaustion. Slept long hours again. Ate food between 5:25pm and 1:45am nonstop. 4 biscuits, big bowl of mush , (lunch -ish portion), 8 asparagus, and 4 more biscuits. It is so tiring, and I wonder how I ever ate the massive portions that I ate and didn't take all day. I'm still missing a whole meal.</p><p>Totally silent eating again. The 3 coughs are ongoing. The dysphagia cough. The airborne trigger/asthmatic cough, and the Covid cough. All made worse by talking. We both got such an enormous scare on Friday when I was without oxygen for so long.</p><p>Like yesterday, I tried for some auditory input, but ended up overwhelmed with my brain shutting down.</p><p>Everything feels amplified by this infection. My joint pain and mobility are worse than ever. Need help with everything. My previous cough issues are magnified.</p><p>Nausea, heart pounding, head ringing, dizzy. GI is broken at this change of diet</p><p><br /></p><p>July 6-7 </p><p>Cough has been less frequent today. The mush is going down easier, so I can spend a little less time eating. No fever tonight. Sense of smell and taste are still off. I'm quite congested too.</p><p>Nighttime migraine/neuro episodes: Every night between when I finish eating and bedtime (12/12:30-5/5:30). Intense head pressure and nausea. Vision flickering (a different visual aura type). Head ringing so loudly. Cannot stand another sound. Moving from exhausted stupor to paralysis. In and out of consciousness. Body becomes increasingly painful and unbearable. Cannot find a comfortable position. Terrible heartburn. Heart pounding. I stay in this state for hours, sometimes very quietly crying out in pain, to the extent that I can vocalize. G came home to find me like this at least the last 2 nights. Other nights, it happened after he went to sleep.</p><p>I am still forced to avoid sound all day to avoid this state. But there's usually noise at night, especially the AC and purifier. I can't stand it. As soon as I go to relax, this starts up. This has been nightly for ~5 nights.</p><p>The avoidance of sound shows the level of desperation. No podcasts. No audiobook. No tv shows. I'm behind on all the stuff I like to watch/listen to. Instead, I just sit in silence. 10 days of this so far. I've only dared try my audiobook for short periods of time, but I feel the ringing and pressure in my head increase and know I need to back off. I know it will eventually end, that it won't stay like this, but it is extremely difficult.</p><p>Ankles/feet look like alien clown feet...so swollen. New symptom of extremely itchy torso, gets quite intense close to bedtime. I haven't had widespread itching since cutting most food from my diet, especially meat and high histamine foods, so it's concerning, especially with no antihistamines and no more food to cut out. Hoping it's just angry mast cells that can calm soon.</p><p>My body can't rest at the end of a day of sheer exhaustion due to all these symptoms. As soon as I go to relax, all of this awfulness starts up. I'm also having trouble getting comfortable in my bed. I have no explanation besides my body just hurting more than it should.</p><p>I'm grateful for the improvements and hope they continue.</p><p><br /></p><p>July 8?</p><p>Carolyn's Saturday night update ~</p><p>* * * * * * *</p><p>My plan to finally take a shower was foiled by my broken brain.</p><p>I prepared mush myself today, but it didn't go great since I couldn't close the blender tightly enough. Nonetheless, I made it.</p><p>I finished eating my first serving of mush and then a small dish of broccoli by 7:30-ish. (The broccoli tasted amazing, a good sign for my sense of taste.) So I planned a short break from eating. My brain was feeling overwhelmed. I went to bed just to ward off problems, but ended up passed out until about 8:30. I came to in a hurry to get back to eating.</p><p>I sat down with my food with G, and I choked on water. I had been swallowing a capsule, but thankfully just choked on the water. The choking spell went on for quite a while. No horrific loss of oxygen, but I couldn't get a good breath for about a half hour. So, I finally ate my mush, very carefully around 9:30, but no more talking. (The timing of the whole day is a bit hazy.) I ate that, and then right after ate my biscuits. Several mis-swallows and rests to try to clear my breathing passage.</p><p>During this time, G and I were kind of watching a show together. He had headphones on, and I was reading the subtitles silently. It felt nice to at least have a shared activity. But my brain was fried.</p><p>I checked the outdoor air to see if airing out for a shower was possible, but it was smoky. We were both relieved, because my brain was so overwhelmed. I ended up passed out again from 2-4:45. I'm just running the AC now, and still not ready for bed. A lot of symptoms are just cranking up again (5:30), like the itching and coughing and heartburn.</p><p>So, it's better off that I didn't shower today, but I feel disgusting, and I'm really hoping for tomorrow. I don't know how when my brain is so easily overwhelmed.</p><p>* * * * * * *</p><p>July 13</p><p>Well, I haven't updated, because I feel I've plateaued. And plateaus are boring.</p><p>In terms of the cough, it's feeling more like my pre-Covid cough, which was pretty terrible. Irritated, asthmatic cough. Really nagging. The part that's still worse is the severity of the post-nasal drip. But the cough is less productive now.</p><p>Then, there's the dysphagia. I've had a few more choking spells, mostly on water. They are scary, exhausting, head-exploding, and they dysregulate my swallow reflex for a while.</p><p>Food, I'm still eating puree as my main meal, although I'm eating biscuits and broccoli too. The biscuits are the trickiest food I eat. They require full focus, tiny bites, and no talking at all to not choke. They also produce excess mucus, but they are solid calories that I need in my day. The mush is going great. I've gotten used to it. I can eat at a normal pace. Easy to chew (obviously), easy to swallow, and easy to digest. I would need to eat quite a bit more to meet my pre-Covid portions, but I eat a whole Magic Bullet full each day.</p><p>Bowel and bladder dysfunction/dysregulation continues. I also feel there's been a distinct weakening, causing more problems with urgency.</p><p>There's still the sensory overload and associated neuro episodes (migraine with brainstem aura and disordered consciousness). I'm still avoiding sound and overall managing my sensory load. I am so tired of it, but the times I have pushed it have been terrible. My auras are currently happening usually between 3:00 and 5:00am or longer. It really disrupts sleep, of course. And it is absolutely awful to go through. I haven't had to use the AC today, so maybe that's why I'm conscious to write.</p><p>My joints and body pains have regressed to their worst state. My upper and lower body mobility are both terrible. Mom comes by and helps me with <b>everything</b> I can no longer manage on my own.</p><p>Finally (maybe), the itch that has taken over. It has been really miserable the last week or so. It's all over my torso, especially my psoriasis plaques, but also my entire back. With my bad joints, I can't reach to scratch. And even using the back scratcher hurts my hands too much. The itching is terrible, because it flares when histamine levels peak...the overnight hours. If I wake up for any reason, I have so much trouble getting back to sleep from the itching. Anything that prevents restfulness and sleep is a big deal. I really hope this one is a phase.</p><p>My body is just screaming for an antihistamine.</p><p>Sleep, I guess, is the last bit. Other than the first terrible, high fever, manic night, I was sleeping well during the infection. I woke up in such pain, but I slept long hours and easily got back to sleep. I am not sleeping well anymore, due to both the itch and the pain. But my schedule is still totally a mess.</p><p>I have no idea when some of this will improve and what can improve. I would hope the fried brain problem will ease off gradually, and I'll be able to return to actually being able to entertain myself. I would assume my sleep schedule can return to normal with sleeping less, but it'll take time.</p><p>I hope today was especially bad because of the storm, because pain has been through the roof. The rest, I'm just not sure where there's the possibility for improvement. I hope I can return to Spanish class one day.</p><p>I'm going to sign off, because my head pressure is increasing and ears are ringing and I'm nauseated, and I'm so afraid another neuro episode will strike. I will go try to rest my brain in every way and hope to get a night off from those attacks. At least I'm very grateful for the mild weather and fresh air tonight after a stormy day.</p><p><br /></p><p>July 14 </p><p>I guess I'll just start writing my diary again instead of email updates. As far as I can tell, recovery from Covid in the general sense is over. And I'm left more broken than before, of course. Covid had typical symptoms at first, but then just amplified all my usual problems and added a few new ones. There was the brief reprieve in the first week where my joint symptoms decreased significantly. It's when my fever was 102-103, and my theory is that my immune system was so busy fighting something real that it temporarily forgot to fight me. Despite how it messed with my mind to suddenly stand to almost my normal height, get in and out of bed with ease, and use my hands more fully, I'm still grateful for any respite to help me through that terrible time. It does show what the world could be like with a powerful immunosuppressant, if I could even tolerate something like that or the risks that accompany it...which I couldn't. But oh, what a world.</p><p>It was also fascinating and devastating to see my life without my sense of smell. I haven't recovered from the sensitization that occurred in my obliviousness, and I couldn't be more grateful for how my sense of smell protects me.</p><p>Enough of the big picture. Today was hot and smelly. Mom came over and helped and brightened my day like usual. I ate my biscuits (twice), my mush (twice), and some asparagus and artichokes. I still need to almost double my portions of mush to meet my pre-Covid levels. I am not sure when I'll be able to do it, but my weight being in the basement doesn't help anything. I will keep pushing to eat more and get back to the needed portions. I did pretty well with the dysphagia today. No bad choking. Just very careful eating and totally silent eating of biscuits.</p><p>There was a storm tonight. I assume that's what hit me. I got hit with the brainstem aura around 9:00, and it lasted until 11:00. I was mostly unconscious. I could blame listening to my audiobook, but I prefer to blame strictly the storm, because I just need brief moments of something in my head other than my own thoughts.</p><p>So, I've listened very quietly to an audiobook or a show on my phone several times. I feel like admitting guilt to the crime of not being strict enough. Like I am lying, like I am cheating, like I am asking for it. I need to limit my time frame and truly listen to my body. If that head pressure or ringing goes up, maybe it's already too late, but I need to return to silence. I'm still nearly 100% on brain rest. I do have a couple conversations a day, one with Mom and one with G. Otherwise, I'm stuck with my own thoughts basically 24/7.</p><p>I'm still super exhausted and lethargic mostly. Although it's uneven. I just crash so hard into stupors that can last hours, especially after eating. But I'm not allowed hours, because I have to eat again shortly.</p><p>My pain is horrendous, honestly. So many body parts so painful and limited and weak. My knees are returning to pre-reprieve levels. Or worse. Feet killing me. My hips are tricky but not my biggest complaint. My sacrum is worst when I sit in bed a lot. My right shoulder is getting bad. My left elbow is getting worse. And my hands. My right hand is still worse, but some days it's close. My lack of manual dexterity/grip due to severe hand pain limits everything. It's mostly why I need so much help with just about everything.</p><p>The itching still drives me absolutely nuts. A gift from Covid to add to the list. Yes, my plaques, but mostly all over my back. I swear, it's gonna make me lose it. It's a huge factor in my decline in sleep. High histamine levels at night keep me awake, itchy, and heart pound-y. They seem to follow my body's adjusted circadian rhythm and peak in the last hours before sleep and when I want to be asleep. Enough that getting to sleep is hard and getting back to sleep is harder.</p><p>The AC is an asthma cough trigger.</p><p>The shower is an asthma cough trigger. Showering is becoming a bigger obstacle every time I do it, with the intense cough keeping me up at night and persisting the next day.</p><p>Both of these are now shown to be causation and not just correlation.</p><p>Another one is the gluten cough, which my friend, Kim, alerted me to just weeks before Covid hit. That extra layer of coughing...can you imagine how much worse that would have made Covid for me? I struggle enough with biscuits, but when I'm not choking, the gluten free oat flour ones don't make me cough at all, if that makes sense. They still produce excess mucus, but not that terrible cough. One less trigger is one less trigger! So grateful.</p><p>My bowel and bladder were acceptable to me today. Urgent, yes. But acceptable. The worst is still trying to get to the bathroom when I've just woken up, and it takes all my strength to get out of bed, and all of my power to make it to the bathroom with the excruciating pain and profound weakness.</p><p>I don't know when my schedule will regulate. I would really need to return to monophasic sleep, which means not being awake all itchy and heart pound-y from 10am to 1pm. I don't know when that will be possible, because I can't control the itching and histamine levels at all.</p><p>So, with all of this, I don't know when I'll be able to return to Spanish class. I miss it so much. But feel completely unequipped to even consider it right now.</p><p>Covid took more from me when I already had so little. I'm not surprised. Just frustrated and anguished.</p><p>Well, that was more than just today. More like everything. But I'm trapped with my thoughts! Gotta go turn the AC back on, cough uncontrollably, scratch my skin off, and try to prepare the bedroom for another warm and smelly day tomorrow.</p><p>July 15 Today went mostly as expected. Woke up on the early side at 2:45pm after a biphasic sleep. Made a mess while blending my mush, because I can't close the blender tightly enough. Managed to eat all my biscuits, all my mush, plus artichokes and broccoli. Not a lot of breaks. I have the heartburn to prove it. My left elbow is worse today: really hard to bend, which is extra limiting. For example, I hold my toothbrush with two hands to brush, but my left arm had trouble reaching most of my mouth. I'm also struggling to rotate the arm and wrist internally or externally without too much pain. It's within my forearm as opposed to a joint.</p><p>I mostly rested my brain until time with hubby could begin at 8:00pm. We made the most of the situation. We chatted while I ate mush and broccoli, because those don't make me choke easily. Next, he helped me cook quinoa, and while it was cooking, we ran from the AC, hid in the bedroom from the noise, and played a game. (How Well Do You Know Me type of game)</p><p>Then, while I ate my biscuits silently, we put on a show. We opted for the laptop since it's less stimulus than the TV. We made it through 2.25 episodes of Party Down before the warning signs began. It's further than we thought we'd make it. I started compulsive yawning, and sound started getting really loud.</p><p>So we called it and retreated to our areas. Him to finish watching Aliens with headphones. Me to inevitably suffer through a brainstem aura. Sound was so loud, I had to close the bedroom door despite the need to cool it. My heart pounded loudly. I was unconscious pretty much straight from 2-4:45am. I came to violently with aggressive itching, urgent toilet needs, intense heartburn, and a strong feeling of nausea. There was such a daze. At one point early on, G checked on me, and I couldn't make words. My head pain is just settling in. Above the temples and in the face, jaw, and teeth. A monster migraine with pain and nausea so intense. Also a pain in my sternum with each inhale. My sacrum/tailbone are killing me from hours immobile on bed. It's still hard to move.</p><p>I used up every bit of brain power I had today. And what better to use it on than quality time with my hubby? It feels horrible right now, but we all know the night could have ended up like this anyway, for any reason. My sleep will certainly be delayed/disturbed, since so many symptoms are just peaking now, having been dormant while unconscious. Itching and heart pounding like crazy. First thing I did was look for my plastic fork, which I use to scratch my poor itchy back. Hoping relief can come soon, and my body can calm. It's already 5:30am, and I'm no where near ready to sleep.</p><p>July 16 Holy crap, I had no idea what I was in for when I last wrote. Life became a living nightmare. I finally tried to go to sleep at 6:30, and Gustavo helped me with the usual bedtime stuff. But every sensation my body knows how to make was maxed out. Allodynia/central sensitization/pain crisis. It was every pain I ever have times 10. (Trying not to be hyperbolic. But it can't be understated.) I tried to read on my left side, like usual, but my entire left arm from shoulder to hand was in agony. I rolled partially onto my back, abandoning my book, but when I woke up, the arm felt even worse. It was around 11am, and I was absolutely wailing in full-body pain as I hobbled my way to the bathroom in a usual wake-up rush. Thank goodness G was home. He's never home at that time, so I was so fortunate. He helped me back into bed through the wails of pain, helped me rearrange my pillows, located my meds for my next dose, and tucked me in. I was incapable of any of that alone. I couldn't move a pillow. I couldn't move myself without screaming.</p><p>Anyway, I couldn't possibly feel sleepy, so I attempted to read on my right side this time, since my right arm is comparably less damaged. I tried and did for a while, unfortunately giving myself a corneal abrasion against my pillow in the meantime. I don't know how I slept, but I woke up in more agony. Left arm was slightly relieved, but this time right shoulder and arm were excruciating.</p><p>Another wake-up trip to the bathroom while crying out in pain. The pain of supporting my weight through my arms was so much. But so was the pain in my legs/knees. I couldn't distribute the pain in any non-torturous way. This time, I was alone. Luckily, the degree of torture was down by about 15%. I managed to get dressed and grab my biscuits, which I ate on my bed, in the dark quiet.</p><p>The rest of the day has been survival. Avoided all sound besides the occasional sound of G's or my voice. No pushing any boundaries. Oh, and with a terrible corneal abrasion that I needed to bandage myself. So, I couldn't use my ears and I had to minimize using my eyes, since my eye and nose would cry if I moved them.</p><p>With G home on the earlier side, I had help and company. He was able to watch a movie with headphones while I ate or sat in a stupor...but mostly ate. I ate biscuits, mush, a whole veggie plate, more mush, and more biscuits. The only difference being that I ate broccoli, asparagus, and artichokes all in one day. It was a lot of food, and I have had heartburn. But I'm still probably around 80% pre-Covid calories. I don't know how I ate so much. But I'm giving my best effort, despite the challenges.</p><p>I only had one dysphagia spell today, on water again. Only lasted about 10 minutes, and I was able to return to my food, although eating felt more precarious again with my throat acting up.</p><p>My plan is to no longer lie on my side at all. It will be hard, because it's my system for inducing sleepiness. I read on my side and then roll to my back when I'm sleepy. It's harder with my elaborate system of pillows to support my wrecked legs, but it's been working. Now, I will have to try to read on my back and sleep on my back. There's no real good neck position for it, and I'm not sure how it will go. I can't do audiobooks because of the noise of the purifier, my sound sensitivity, and my sleeping earplugs.</p><p>I can only hope today goes better, since I babied myself and my brain to the max all day. Everything still hurts. My eye abrasion is not yet healed. My left arm hurts more than it ever has before. Wrist rotation hurts worse. I feel dread about sleep going so wrong again, afraid my shoulders won't be able to take any position. But I have to sleep flat. It's the only thing that differentiates waking rest from sleep. I hope it works out. I have an ongoing migraine but not a new one, so maybe it will be tolerable. I'm so scared of that feeling of central sensitization, where every pain is amplified, and non-pain sensations are interpreted as pain (like cold temperature or the wind or touch).</p><p>I got a new pair of ear plugs that just might help with the AC/purifier noise.</p><p>I don't know when I'll try sound again, but I'm not real anxious to see the possible outcome. I'll probably give it another week.</p><p>The pain is spiking again here at 5-6am. I am sorry and sad to admit it, but this pain I've been experiencing the last 24 hours is suicide level pain...particularly in the late nights/overnights. Meaning if this pain were to continue for a certain duration, one could no longer take it. I cannot find a position to be in without countless pains. Normally cushions and pillows and modifications can ease it. But not at this level. It is excruciating. There is no future like this.</p><p>July 17</p><p>Cognitive overwhelm... It's become clear to me today that I am not only getting sensory overload to sound. I am also getting cognitive overwhelm to thinking tasks. It became clear when I went to play my daily Sudoku games. I normally play for an hour or more while watching a show. It relaxes me and helps me pay attention to the show better too. Today, I realized my brain was showing signs of overwhelm from my favorite relaxation app. Pressure over my temples, ears ringing, sudden absolute exhaustion. I stopped, and it relented. I don't believe I've experienced this level of cognitive impairment. There is so little I can do with my day right now. With no audio input and no simple games, I don't know what's left. I've read all of Facebook, which apparently doesn't take cognitive energy. haha.</p><p>I believe that my super cooling of the bedroom near bedtime has probably contributed to my pain spikes. Not caused. It's just that when I have allodynia, cold=pain too. Cooling the bedroom well before being sealed up and heated up is a really key tool for me. I can only ever get it down to 74 at the absolute lowest, so it's not actually cold, just cooling, blowing air. So here at 4:15, I haven't run any AC yet. I'm going to save it for the last possible moment and deal with the heat if needed tomorrow. It will get much harder when it gets hotter again.</p><p>After my horrific pain night Saturday, where I lost my ability to lie on my sides due to arm pain, I also lost my ability to read in bed. Reading is how I get sleepy and how I distract myself from everything until I get sleepy. Lying on my left side is also really good for my GERD and my heart palpitations. It's a very calming position. But not when it turns your arm into a source of agony. So now, I'm trying to find another way.</p><p>Last night failed. I tried with a tiny extra pillow behind my head, a pillow on my chest, and the Kindle on top of that, all lying on my back. But I couldn't see the book, the light was in the way, I had to just hold the book up, and my head was at the wrong angle.</p><p>I have one more approach to try tonight, but I may be out of luck. And of course, I tried an audiobook when all else failed last night, and I was in agony and not sleepy, but sound cannot calm me right now. Only activate me. Just a few weeks ago, in early Covid, I did use an audiobook to help me fall back to sleep, and it worked great. <b>But I have a different brain now.</b></p><p>Air in the apartment smells/feels so moldy today. Minimal ventilation. Asthmatic coughing all day. I finally just now got fresher air coming in, and the cough has basically stopped.</p><p>I was doing my best to accept the brainstem auras as an inevitable part of my near daily life. But that was before the lasting effects of torture level pain associated with central sensitization. (I say lasting, because both arms are so much worse since this happened.) Now I fear them again, and I will do anything to avoid the cognitive overwhelm that pushes me toward it. That still means zero audio input for who knows how long, and now minimizing cognitive "strain" as well. Mental exhaustion is one thing, but this is a whole different ballpark. (I made a sport analogy.) I was willing to push it before. Now I'm terrified to ever feel this again. It truly feels that my pain/mobility has worsened again with my arms now. Like a full-on progression. I can't brush my hair, for example.</p><p>I think the only thing I can try is pacing. It feels like pushing a brain that should only rest, but if I can listen to 5 minutes of something a couple times a day, maybe that's better than nothing. But maybe that's really stupid. I just literally can't live with that happening again. I mean, it's still ongoing but less severe than it was. But I cannot take that severity again. I feel I know how to avoid it, but how to maintain that level of avoidance?</p><p>I need to post these blogs, but I don't know when I'll be up for copying and pasting and including the Covid email updates.</p><p>This fresh air is amazing. I wish I could leave it open all the time. The mold and indoor VOCs would kill me slower.</p><p>July 18. My weight is not recovering from the Covid hit yet. This severe weight loss and muscle loss is known as cachexia. It is generally a late stage symptom of serious disease.</p><p>https://www.medicalnewstoday.com/articles/315312</p><p>My BMI is currently a perilous 14. The loss of musculature is devastating, but especially for someone with EDS. With EDS, your ligaments and tendons can't hold you together, so you rely on your muscles to pick up the slack. Without the support of connective tissues or muscles, I'm literally being ripped apart when I exert force. The immune attack on my joints has caused such movement-limiting pain, and it's a vicious cycle, because that leads to the worsening of EDS symptoms. And all of this degenerative. The cachexia is also associated with edema, like I've got on my feet and ankles.</p><p>But this makes it sound so straightforward. This is not simple case of "Use it or lose it." My bladder is the perfect example. Like any normal human being, I exercise all muscle necessary throughout every day to hold my bladder to the best of my ability. It's not like I was on a catheter for a month, and those muscles never got worked. They're worked throughout the day every day. And yet, the weakness has developed, practically overnight the day the fever spiked. Those muscles are weakening despite constant use. The same goes for my leg muscles. I never stopped walking and sitting down and standing up throughout each day. I barely reduced my steps, albeit with a walker. And yet, muscle wasting. It's a complex disease process happening in my body beyond my control. And same goes for the weight loss. You can't necessarily eat or exercise your way out of this disease process, thus it feeling so impossible. But that should help me feel a little less guilt! And I feel constant guilt.</p><p>So how did I develop an autoimmune disease and have it progress and degenerate to such an advanced stage so quickly? My body having surpassed its tolerance for treatment/intervention after a lifetime of aggressive and invasive interventions is a big one. Lack of ability to tolerate treatment allowed it to flourish, although I've had signs for years. But no immunologist ever caught anything, probably because they focused on allergies and mast cells (or just called me crazy for claiming fragrance reactions.)</p><p>Then, there's the mast cell activation/chemical sensitivity component, which is enormous. Unchecked mast cells (again due to lack of tolerance for treatments) have allowed my body to develop reactions to a wider and wider array of triggers of every type. The range of things my body sees as an attack or a stressor is insane at this point. But all of those stressors and exposures and experiences that have challenged my body have led to the most minor things causing progressions. A car ride being the one I think of often. But watching two episodes of a TV show is another one. The car ride March 28 setting off so much of this chain of events. The tv watching causing a neurological episode that triggered central sensitization and led to the decreased ability to use my arms is another. Stressors are widely known to progress autoimmune disease. Covid was, of course another one. The list is endless, because as I said, my body thinks just about everything is a stressor.</p><p>I obviously don't know a way out of this tailspin. If I did, I would do it. But I see what my body sees as an attack, and what I experience as an attack, and I simply cannot imagine a world where I would try heavy duty medicines that are extremely rough on much hardier bodies. This is an area that brings even more guilt, like I'm letting everyone down by not seeking out care, despite a lifetime of experience showing that it can't help, but it can make your life even more hellish, with no one to help you out of that new hell.</p><p>So where does this lead if I continue to lose independence with no access to nursing care? Those are questions we don't ask.</p><p>These are the types of things I mostly avoid thinking about, because they are terrifying and that terror doesn't serve me. But I am not ignorant to them.</p><p>So, today. (July 18) Today, Mom and Andy came over. They brought a dog to lift my spirits after that hellish weekend. Andy worked on sealing up the worst parts of our bathroom with a waterproof tape to try to lessen the exposure, since real remediation is not possible. I didn't handle it well. I should have hid in the bedroom with my purifier. But we did have fans blowing in outdoor air. Nothing really should have been stirred up by the process of drying and applying tape. But that bathroom is poison to me, and my asthma was triggered. It's eased a little, but no access to fresh air yet tonight to help me feel better. I smell mold more than ever tonight. But the stupid outdoor air has been full of laundry fumes for hours. So I'm just surviving with an irritated airway and so much coughing.</p><p>Since the company and the dog (don't blame the sweet dog!) and the fans and I guess the bathroom was so much for my system, I haven't done anything since, barely. I ended up losing consciousness for about 20 minutes so far tonight, but there could still be more. So just writing this is apparently pushing my brain. Going to keep it mellow and hope for fresh air access soon.</p><p>I got new ear plugs to help me minimize sound and give my brain better breaks. It was no easy task to find some that fit my tiniest ear canals, but I found some (Happy Ears). I don't have the longest endurance for wearing them, but they do provide nice breaks.</p><p>My heartburn was so bad from eating so much food in so little time, but I know I'm still coming up short on portions. And at 3:00am, I'm hungry. But GERD won't let me eat more today. Just have to try again tomorrow.</p><p>Sleeping on my side is still definitely out since this weekend's flare up. I don't really see it changing either. I did manage to read during my sleep break, although it was very complicated to set up reading on my back, and apparently, my vision is way worse than I thought. Somehow, lying on my side with the book 4 inches from my face was no problem. But it's a lot trickier lying on my back, and my vision is what I fought with most. I think one eye reads the top of the page and the other reads the bottom? I have no idea. And neither do the eye doctors! I turned the font up quite large, larger than I've ever needed before, to try to help me read. I had multiple pillows on my chest with a device rest on top of that. And then a flashlight in my armpit. Like I said, so complicated when all I want to do is curl around a body pillow on my left side and read however I normally do with no effort.</p><p>But it did help me pass the painful time enjoyably and distract me enough once I could get into the story. It takes 45-60 minutes on an average day before I get sleepy again. So I hope I can keep figuring out how to read in that time. Honestly, I have so little I can do just in life in general, and all my coping tools are being ripped away.</p><p>I sure hope I can get back to tv and podcasts and iPad games and all that soon. Whenever soon may be. For now, the only approach seems to be extreme pacing. Monitoring for signs of overwhelm and stopping all activity at any sign. A really good one is my ear ringing getting louder. That, along with head pressure and sound sensitivity seem to be the signals I must listen to and obey. So maybe I can play a silent game for 10 minutes and then rest and do nothing. Or I can listen to 5 minutes of an audiobook...and then rest and do nothing.</p><p>That's my approach I'm trying out. I'm trying not to be so hard on myself when I unintentionally do nothing but stare for 45 minutes when it was meant to be 5. The problem is that I'm probably delaying my food, which is downright dangerous now. The balance of my body's need for sustenance and rest is an impossible one. Because you can't eat at all if you are unconscious for hours. But I am hard on myself. I constantly feel that I'm failing myself and my loved ones, when really there are processes beyond my control. I just don't want them to have to watch any further decline, and I can't really face it myself. But I'm not failing. I think I need that reminder.</p><p>Oh, and why can I read overnight for up to an hour straight? Because there's no sensory input, and more importantly, I'm drugged. Even after all this time and loss of tolerance for meds, the reason I'm still here is my access to tolerated brands of the drugs that calm my system in the overnight hours. They aren't all-powerful, but they can calm pain, itch, agitation, cough, even heartburn, and my potent case of insomnia, because they calm the system, including the mast cells. Obviously, their job has gotten bigger with such powerful symptoms peaking overnight, and there's only so much they can overcome. But nothing is possible without them. I normally ration and underdose, but I have been needing full doses the last week or so, taken in biphasic pattern again, because they don't last long enough if I take them all at once, and then I've only slept 4 or 5 hours.</p><p>Parts of the day, when Covid was active, I slept so hard, it was amazing. I barely needed my sedatives. And of course, there was that brilliant period where my joints were improved. I wish those could have stuck around instead of me getting worse, but I wasn't delusional. Anyone that knows my story knew that Covid would hit me hard one way or another, and there would be some major lasting effects. This body was pathetic going into it. It wouldn't come out unscathed.</p><p>Brain getting so tired. Time to close my eyes and do more nothing, my favorite pastime, so it would seem.</p><p>And oh yeah, let's not talk about the real dark despairing type of stuff in real life. This was already too much thinking about it.</p><p>PS Laundry fumes continue at 4am. All night. No clean air access all night. I may just be trapped with the irritating moldy air I've got. Although worse is to come for air quality with Wednesday lobby stink-bombing and then warmer weather. So I'm enjoying my time in the recliner while I can. It was "fun" while it lasted.</p><p>Ugh. Waited through 7 hours of terrible indoor and outdoor air. Thought I got fresh air at 5:35am. Quickly let in strawberry cigarette smoke that filled the apartment. That means I'm sealed in the bedroom without having had any AC access into here. Hard to sleep at 81-82°, although I do it a lot. I just normally start cooler. Plus, I feel like I blew my brains out running the fan on high, the AC, and both purifiers on high briefly. My ears and face are killing me. The AC is running, but I can't let any air into the bedroom. Such terrible air all night. I'm so done. Hope I can sleep, cause I can't stop coughing, and so much of me hurts. I can barely lift an eight ounce glass of water tonight...with both hands. Feels like it's tearing me apart. At least that put an NSYNC song in my head. (IYKYK) The soundtrack my brain chooses to play during these weeks of silence is always interesting. (How did the song from the movie Big Daddy where the kid wants to hear the video over and over again land in my head? From where did you come?)</p><p>July 19</p><p>I've been editing this blog for 3 hours, so I'll actually be brief.</p><p>Itching has been slightly less. A gift from Covid may be an elastic allergy. But I don't know, as the rash is ongoing. It's certainly irritated by anything that squeezes.</p><p>I don't know how I'll ever shower again with my cranked up sensitivity to the bathroom moldiness, particularly post shower, but truly all the time. The asthma is unbearable. It's been a week, and I know I'm gross, but I can't fathom trying again.</p><p>It's clear from my notes that bowel and bladder problems got badly flared up by Covid since day 1. I think I'm left with greatly weakened pelvic floor muscles, and building muscle is not something my body does much (cachexia). So frequent, urgent bathroom trips are just part of my everyday life now.</p><p>In so many ways, my life is worse than before Covid. But let's be real: it was absolute shit beforehand. Several problems are amplified and progressed. But I have a progressive condition. That's what it does.</p><p>The biggest life changes have been: the intolerance of sound and cognitive overwhelm, and more recently, the decreased use of my upper limbs. The sound and cognitive impairment, I blame on a constant migraine state that flares up worse at times and has a hair trigger. Constant migraine states tend to calm eventually. I have never experienced this degree of prolonged inability to listen to anything or even play simple games. I've compared it to a TBI before, which is quite apt. I really miss my shows. Really. I'm being left behind. I care about my stories. In addition, I haven't been able to hear Spanish. That's been at least an hour a day for the last couple years before this. So I'm afraid that all this brain fry will make me lose some of my progress as class goes on without me.</p><p>The upper limbs were going to happen anyway. No doubt. They just happened now. It's my left arm all the way from shoulder to hand and especially elbow and then my right hand and shoulder. Putting the requisite weight through my arms to support myself on my walker can be truly excruciating. Peak pain hours are the last few hours before sleep, and then all overnight, and then the first hour of the day (So 2am to 4pm). So getting ready for bed is so hard, trying to get comfortable in bed, getting up during each of my two wake-ups to go to the bathroom, and then getting dressed in the morning. That's when most screaming happens.</p><p>Although, my left knee has really joined the party, having been my good knee before. Now, the bubble pops when I go to sit down are horrendous. I can't do it silently.</p><p><br /></p><p>Okay. brain is throbbing. This was dumb and long and too much mental energy, but it's done. My record of what it's been like. I'm sorry I haven't updated personally. Obviously, there are no brief answers as to how it's hitting me and how I'm coping.</p><p><br /></p><p>Going to go hide in my bed with my ear plugs and do nothing for these painful hours before sleep. And hopefully stay conscious/not paralyzed?</p><p><br /></p><p>Thanks for reading. Thanks for caring. Sorry for typos and repetition.</p>Carolyn Medranohttp://www.blogger.com/profile/02811093427920453122noreply@blogger.comtag:blogger.com,1999:blog-833972720679789479.post-76551275199909562752023-06-26T04:51:00.002-05:002023-06-26T04:56:41.482-05:00Journal through June 25, 2023<p>I'm sharing tonight, because I never know when my next coherent night will be. And I'm lonely. But my hands hurt a lot, so I can't do much editing of my phone notes.</p><p>May 31 I thought I was done reporting on May last night, but then today happened, and it can just go f*** the f*** off. I had fallen asleep in the recliner...pretty common and even somewhat planned so I can have help getting to bed. But I had fallen asleep with my head in some awful position. No collar on. I can barely put a collar on myself right now with my barely functioning arms. But I must have fallen asleep quickly, because I didn't have it on. And my neck was in total spasm. Luckily, G came and quickly massaged it out as best he could. He stills thinks I have my old neck of steel muscles, which I do not. So the massage was way too rough, but still effective. I am not allowed to mess up my neck that way, because it is putting strain on the spine below the fusion. And there will be no further repairs for me. I lived through that brutal disc issue in 2019 with no help and no pain meds, and I need to do whatever it takes to avoid that horrific pain.</p><p>Then, I got myself prepared and got in bed, with assistance. But somehow, in bed, I got myself stuck in an excruciating position with my left arm bent too far, unable to get out of it for a while, since I couldn't straighten the arm from that far bent. I called G desperately. He was already in the parking lot, leaving for work, but came running back in to help me, because by then, I had also dropped my kindle to the floor and basically under the bed, plus I was stuck in that position that's hard to describe. He came and helped. I finally, finally fell asleep in bed.</p><p>But there's no rest for the weary. I didn't sleep deeply or long or well at all. The warm weather is here, and the bedroom hit 79. Of course, when it's actually hot, my body forgets how to sweat, and I just broil. All those cool nights of sweating and deep sleep...gone. It is well and truly summery, and my sleep quality suffers. So, I woke up, and the day started hard. The pervasive scent was back. The bedroom thankfully sheltered. But I couldn't air out the living room due to the smell of hot, wet asphalt outside.</p><p>Mom, thankfully, came over like usual, and I did not bring the joy. Pain was spiking. I was unable to move how I needed. Crying from pain and despair. What a hopeless, joyless situation. But I'm still so grateful she was with me, helping with a million little things and being the best company.</p><p>I was fortunately able to tolerate the living room long enough to eat there. I still haven't eaten a main meal in the bedroom since the deterioration. My little air purifiers are still helpful in the living room, giving me a little freedom. They just don't have the power of the Foust. That thing is amazing. I've had some iffy and failed purchases lately (see: upright walker, organic bamboo mattress encasement), but this one pays dividends daily. The best thing it does right now is allow me to let some cool but scented air into the bedroom and then purify it, so I'm not living in a sauna. An amazing tool I would never go without.</p><p>So, I went to class, despite the tears and despair and pain. But right after class, it was my GI's turn to act up and add to the misery. This is a TMI warning for digestion:</p><p>I had been bloated for a while, so 2 days ago, I took one less magnesium capsule. That's all. That's all I did. 4 instead of 5. And the bloating went away. But yesterday, I had a very difficult BM. It was not firm. I cannot pass firm stool due to an already stretched out rectum. Unfortunately, when there has been one difficult BM, the rectum gets all stretched out and loses its tone. So today, I had a much worse one. I tried walking around first to help it come out more naturally. The urge was there. But it could only come out with manual assistance. This was very painful and devastating. The only other time I had this problem was on opiates, but that was too hard stool. This was simply not able to come out. The peristalsis was trying and failing. I am sore, throbbing actually. And totally unsure what dose of magnesium I should be taking. I clearly will need extremely loose stools for a while. I believe the rectum could recover (not perfectly, but back to some functioning). The magnesium I take today doesn't affect me until tomorrow. It's so, so easy to overdo it. I really hope I got it right and that somehow, it can move along without assistance tomorrow.</p><p>I actually learned how to splint and assist with BMs from helping my little Wilma. Some days, she couldn't pass stool unassisted, and I would watch her struggle, and I just intuitively knew exactly what she needed to help it slide right out. A sadly useful skill.</p><p>So that was the punctuation of a day for May. I have no hopes that June will be better (everything is progressive), but all I can do is live day by day. So I can hope tomorrow will be better, despite being another warm one.</p><p>For tonight, I am just planning on going to bed without assistance, before falling asleep in the recliner and risking my neck.</p><p>June 1 Well, not much went as hoped today. I slept terribly. I woke up, sadly, with intense right flank pain after 3 hours of sleep. I went pee, and the pain did ease up. Stupid kidney. I thought I ate very low salt yesterday, but maybe not enough? I ate almost none today. After that, I went back to the warm bedroom. 79 degrees. My body dry as a bone, not sweating at all. No temperature regulation. I have been fortunate enough to be able to get back to sleep after wakening the last few months, an extremely welcome change. But that's gone now. My deep sleep is gone. My ability to get back to sleep gone. I was really enjoying every single moment of actual sleepiness. But the hot body means the brain is awake. I will have to divide my sleep meds and plan on biphasic sleep again. Really sucks. I did it for years, so it's not like it's new to me. But I was enjoying the change. Summer sucks.</p><p>Then, GI trouble again. Unfortunately, increasing my magnesium dose to 6 capsules yesterday did not have any apparent effect. Same problem as yesterday. Manual emptying was necessary again. Very weak peristalsis that just can't move anything through. It hurts, and the manual evac is actually a relief, although it is a long process. I was left in a lot of pain. Throbbing and burning. Strangely enough, no fissures, although I am prone to them. I took 7 magnesium today, so all I can do is wait for tomorrow. For now, I have some diaper cream on there. It is so frustrating and devastating to just watch one body part after another fail.</p><p>On the subject of failing body parts, my left arm is still getting worse. Harder and harder to do anything bent, although thankfully I can still do many things with the arm closer to straight. Necessary, since my left hand is still my good hand. Right hand is making some progress, but it is so easy to overdo it. I was able to write a few notes in Spanish class today, so that's something.</p><p>Along with that, something has started going wrong around my right hip flexor. I already knew that it didn't straighten all the way, that it felt obstructed. Well, now, I can barely lift the right leg. I've been doing little leg lifts all this time, and they've felt pretty even before this. Now, I can still lift the left leg like normal, but the right leg, I basically have to lift it with my hands. In just a couple days, this has developed. It's not atrophy/weakness (yet), because that makes no sense when I've been using my legs equally. But there is a painful, obstructed feeling, and like many movements, the pain is preventing normal mobility. And what honestly feels like something structural. Hell, I don't know. I can only interpret what I'm experiencing. The other limitation this is causing is struggling to reach my right foot with my hands, as I can't seem to bend the hip in very far. This is highly problematic, not just for putting on shoes, but also knee braces and clothes.</p><p>Besides that, my cough was a bit worse again today. I think it was when I opened the door to get some air, and the air quality is just awful right now. Full of allergens and still asphalt smell. Very humid. Summer. I've also been feeling more agitated since it got hot, with the poor sleep and constant noise of AC and purifiers.</p><p>My fever has been tending lower. I was surprised it was 98.9 soon after waking, when I felt the hottest. Tonight, it's back to 99.5. Heart rate around 90.</p><p>My neck and shoulders are still in knots. Oh, how I could use a professional massage. Although getting too loose always gave me problems due to spinal and shoulder instability. But it's great for an acute issue.</p><p>My ear has been hurting intermittently, especially when yawning. I will admit I'm not sure where this comes from. I always thought weirdo migraine, but it's not really that, since it's intermittent, and migraines are pretty darn constant. Maybe just immune/inflammatory chaos.</p><p>The last two days, I haven't lost consciousness. Not really close. So that's a nice little break. Kind of surprising given the poor sleep, but sometimes symptoms change a bit with the seasons. So we'll see how it is going forward. We've got plenty more days in the 80s. Smelly apartment. As for the smell that's been bothering me since it got hot that smells soapy, G says he can smell it in the lobby, and it smells soapy to him too. Probably just the weekly cleaning, only amplified due to the heat. Surely scented cleaners and air fresheners. It would be so amazing if I could get them to not use all that scented s*** in my building. I know some people have fought those battles. Some have gotten lawyers. Those who devote time and energy and have a lot of medical and legal support sometimes win. I have none of those things. I know I'm a peon.</p><p>I have one new skin plaque on my abdomen. I'm pretty sure I'll be a polka-dotted leopard some day. Different spots at different stages of development. Some growing and flared, others starting to fade and soften. The neck is still pretty covered though. The back spots bother me most since I can't reach them.</p><p>No break from the heat for several days. I'm so reliant on my single AC unit plus my purifiers, since I can't even ventilate right now. Frustrated that sleep is not much of a break, since I'm sleeping so lightly. I miss it.</p><p>June 2 Much the same today, except at around the 48 hour mark past the fragrance use in the lobby, it's not so smelly today. I still spent some time in the bedroom to avoid the chaotic noise of the AC.</p><p>Less flank pain today, but sleep was still interrupted. The bedroom was 81 degrees, so it was very hard to get back to sleep. I also had so much pain moving and supporting my legs. Constantly adjusting the pillows, trying to find a position that quiets the pain enough to sleep. But I was also roasting. My biphasic sleep plan kinda worked, although it was more triphasic.</p><p>Leg pain and resultant loss of movement is steadily and noticeably progressing. Left arm pain and limitation is also progressing. Right hand is improving, as I've been noting...but barely. I flushed the toilet with my right hand! I held the phone for 3 seconds instead of 1! But I can cause the pain to spike and setback easily if I overdo it, so I'm only using the right hand when my left arm isn't able to manage something. I'm trying to be careful, but it's easy to get a little too cavalier. The left arm problem is hugely limiting. Even worse than my right hand was, because I had one reliable hand/arm. Now, I don't have any. One on the mend and one progressively worse. Putting on my collar is probably when I strain most. I put it on backwards and spin it, but I can't get it on tightly enough. I just can't reach my neck, even the front, with my left arm. I can't touch my left ear with my left arm. Interestingly, I can no longer wear the rigid collar. Can't really explain why. It's easier to get on but doesn't work for my spine anymore.</p><p>GI is not normal yet. I took 8 magnesium capsules during the day, and one more late at night. I had a BM, without manual internal help (some external splinting), but it wasn't very impressive. It was still a good sign and a good break from over-stretching so much. I'm taking capsules about as fast as I can make them. The only thing that occurred to me is a dietary change. I've been eating ONE sorghum biscuit a day. I wonder if that was enough to back me up. I'll certainly have to test it. Could be coincidence. But I'll skip it for a few days to find out. I took the extra capsule tonight, because my gut doesn't feel awake much at all. I had G listen for bowel sounds, and there wasn't much.</p><p>My cough was SO bad tonight. Lots of uncontrollable, spasmic coughing. It's still ongoing now at 4:30am.</p><p>No loss of consciousness again. More alert and talkative tonight.</p><p>Jaw hurts worse tonight. Really hard to open my mouth.</p><p>Bladder is more irritated with more urgency and excess volume today.</p><p>Temp 99.8. HR 92. Not looking forward to the warming bedroom again.</p><p>June 3 My sleep ran late since I needed extra sedation. The air has been okay inside today. Soapiness is gone for now (mostly--I still get a whiff here and there.) Moving around in bed is still so painful. And lying in bed, which is so tricky.</p><p>I moved up to 10 magnesium capsules today. Five before breakfast and five before lunch. It finally did the trick and did it well. I was able to move very loose stool unaided. This isn't the end though. I've got to attempt to figure out the necessary dosage of magnesium to keep having unaided BMs without going too far. It's all a guessing game. My rectum already feels so much better, but I know it will take time to recover and regain some tone. But I'll have to figure out how to return to somewhat more solid BMs. It's not healthy to keep it so loose, because you clear out your biome and decrease absorption. Just have to get back to a happy medium. For now, I'm grateful for a little relief and concerned about overdoing it.</p><p>More spasmic coughing tonight, but less intense. Mostly while I was eating my biscuits. And I did skip the sorghum biscuit today.</p><p>No loss of consciousness. Again. Very grateful for this.</p><p>Jaw was feeling creaky. My teeth are meeting differently, straining the right side.</p><p>I swear, I am moving my body in any way possible and pushing beyond my limits. The pain is so widespread and beyond limiting. It is truly unbelievable the amount of pain I have to push through constantly to complete the most basic activities. It is difficult to see the deterioration right before my eyes. It's really obvious when you live with it. G sees it all. He knows I could move in a certain way just days ago and no longer can. It just keeps happening. My body wearing down and wearing out to nothing. I don't know when there will be nothing left. I don't know how much worse I can take.</p><p>TV update: I finished the current season of The Great and started Silo. I also finished XO Kitty. I have many ongoing.</p><p>I'm listening to the book Wish You Were Here by Jodi Picoult. The title keeps reminding me of the Incubus song.</p><p>June 4 A few updates today. GI is moving quickly. I took 5 magnesium and have had multiple movements, all unaided (a tiny bit of external splinting, but that's normal for me). Still just guesswork for how much to take each day. No sorghum again. There's a chance it was stopping me up. Only further experimentation can say. But for now, I'm looking to normalize. The bloating is gone, but the abdomen is totally inflamed from all this stress. Looks the same. Feels different, softer.</p><p>We tried a practice run at getting me outside. We learned that it is nearly impossible. Getting my body out to the sidewalk where the wheelchair is is the problem. Even being carried is excruciating for my knees. I'm sure that's hard to understand, but then you don't have these knees. So I am more trapped than I knew. It's hard to think about. Better not. I'm very sore from the attempts. Just more evidence of progression and walls closing in. With pain and effort, I can sit on my patio if I have a good chair and good air. That's it. But I don't really do that. Just planning hopefully to visit with family from out of town this week outside. So disappointing that I can't get beyond the patio. More than disappointing, obviously.</p><p>I finally cleaned our bathroom sink. I couldn't scrub it hard enough to get off all the layers, but it's better. After that, I brushed my teeth while I was up. I was probably up for a half hour. My heart was racing, so I measured it. 170. POTS is back. Surely a combination of deconditioning and not eating salt (and the fever). I've had dysautonomia all this time. Never stopped. But the POTS is back, and it's exhausting. At this point, it feels like my heart rate will just stay elevated now. Of course, this can also be traced back to March 28th, when the fever started, and the heart pounding too. My heart rate is never at a comfortable low rate anymore, in addition to the postural response.</p><p>My cough reflex was strong again tonight, but finally, I was very clearly able to pinpoint a major respiratory irritant. Sometimes, you get an undeniable trigger. It was Listerine. It's not the cause. It's not the only irritant. But my reactivity has been building up, and it is so nice to finally have an explanation for one problem. It's not great. I can't imagine putting more limitations on G. (If it's not obvious, I'm not the one who was using the Listerine. I use as few products as possible and as mild as possible.) It was only obvious because, for once, he used Listerine while in the bathroom, but not after a shower. The immediate spasmic coughing was quite clear. And it couldn't be blamed on post-shower air. I have to hide while he showers every single day, and this could be why. Just today, I had to eat over an hour late due to hiding from his shower. This sucks for him. Answers and clarity are great, but more limitations absolutely suck, and make me know for sure que yo no valgo la pena.</p><p>I have other frequent cough triggers, depending on the intensity that day and what else set me off that day. Having reflux sets off my cough. But drinking baking soda water seems to make it worse. Bathroom air makes it worse. We leave it closed up with the dehumidifier full time now. Outdoor air usually makes it worse. The AC blowing makes it worse. Eating biscuits makes it worse. It's worse at night. Nasal rinses also seem to irritate the area, when it drips down my throat. But then sometimes I have gone a number of days without coughing much. I do wonder if those are days I've been confined more to the bedroom. Less exposures.</p><p>My sleep is still biphasic, and therefore, interrupted and late. Plus, I learned that my head pillow has flattened too much, and my arms went numb in my sleep. I don't know how to keep shopping for suitable pillows when I already own all of them. I wish I could sew and maybe make myself an adjustable pillow. I used to basically have one, but it was made of shredded memory foam, a material I don't use anymore. I had a water pillow, but those get full of mold and eventually leak. My neck also just keeps getting pickier, and my needs change. And...I truly need a different height pillow on my side and on my back. This hasn't been such a problem before. I could just roll around, as long as I wore my soft collar for some stability.</p><p>No loss of consciousness again. I like this streak, and I have no control over how long it lasts. But it's marvelous.</p><p>I'm up at 5:30am tonight. Not great. My schedule keeps getting pushed later with biphasic sleep (with prolonged time in between sleep phases).</p><p>I was feeling a lot of negative emotions today, despair but also irritation and rage. I thought some fresh air would help. I never get a change of scenery. That's not for me to have. The air was scented. It's just not for me, like so many things in this life that are not for me. I bet I will get back to emotional detachment soon.</p><p>But a support group member passed away, again. Forced to take his own life when his housing was lost, and his situation became impossible, because he couldn't find any safe place. Housing made him sick in the first place. Mold illness and MCS. Likely MCAS too. He asked for so little in this life and got nothing.</p><p>I am mourning and grateful for what I have and resentful for what I don't have and fearful for what else I will lose.</p><p>June 5 Well, I'm afraid I pinpointed the cause of the worsening cough (specifically the last few days). It's been so bad since Friday, the day I got a new filter installed in my AireOx purifier. I'm afraid this is quite possibly causing the worsening, mostly due to the timing. But I've also noticed that I don't cough in the bedroom. I need to find out if the filter material changed. Otherwise, it's just that I've never been around it new before, since my mom gave it to me, and it already had a filter in it. This would really suck, because I rely on that purifier. And I chose to change the filter now to cope with the ongoing fragrance exposures as well as other allergens. It was already helping a lot before the filter change. The coughing has been awful though, so I will have to leave it off for a bit, and then potentially look into the filter media. It has absolutely no smell, which actually surprised me, because potassium permanganate tends to actually have a scent. But I didn't imagine that this new, scentless filter could be harming me. It's just, the timing is way too perfect. Thanks to my journaling, I can see that it was exactly Friday later in the day that my cough became reactive. Also, I haven't spent a lot of time in the bedroom, but I don't tend to cough once I've been in there for a bit. There are so many contributing factors, but this is an important one to figure out for sure.</p><p>A few hours later, post shower, I've run the AC but not the purifier. So much less coughing. So much less.</p><p>Today, I was not careful with my right hand, and I grabbed the iPad with it. I dropped it as soon as the pain spiked, but it's caused a setback for sure. Showering is a careful balance between hands, since the right hand and left arm are both limited. Just typing this on my phone hurts tonight. Such a stupid decision. It's too soon for pushing my hand beyond what's comfortable if I ever want to improve and keep improving.</p><p>I had a left arm pain spike today too, causing worsening ongoing pain. It was the same move that got me into trouble. Trying to stand up from the stool while brushing my teeth at the kitchen sink, and leaning my weight on my left elbow/forearm.</p><p>It is just so hard, because with my legs unable to do much, the arms inevitably have to take over so much of the work. I have to hoist myself up with my hands and arms. And that extra strain has just been too much. With my osteoporosis and low weight, and sudden overuse of certain parts, I believe stress fractures are a likely explanation. Not my first. Description fits perfectly. Pain avoidance is the only way to heal.</p><p>https://my.clevelandclinic.org/health/diseases/15841-stress-fractures</p><p>Yeah, I'm my own doctor. I at least have a lot of medical experience with this one body.</p><p>Yet again, no loss of consciousness. Potsy? Yes. So much. Heart barely slows down and races when upright, just like the good old days. Post-exertion malaise? Yes. Digestive malaise? Yes. But conscious. It's been a nice streak. So nice. However, as I've noticed before, the more time I spend fully conscious, the more aware I seem to be on a deep level of my situation. My emotions have been negative and dysregulated. I guess I have to accept that it comes with the territory. The more aware you are, the more you can feel how much things suck. Anger, despair, dread, hopelessness, and more anger. I've had some intrusive ruminative thinking as well. Very negative. I won't share. I guess I'm more fun to be around when I'm half dead. I don't want to be around me, but I'm trapped in every way.</p><p>The emotional distancing I am forced to do is pretty insane. I have to avoid so much in order to stay detached, music being a big one. I cannot listen to music. But also stories of people struggling with (and especially "overcoming") medical problems. Anything about doctors. But it's honestly so much bigger. I have to avoid nostalgia. People being deeply in love and able to enjoy it. Animal human love. Family togetherness. Thoughts of the future. What the world thinks of us "undesirables,"--anyone unwanted by society really. I couldn't possibly describe the number of emotional "triggers" I try to avoid to protect myself and try to remain pleasant. And when I can't avoid, I try to stay detached. Those emotions are always there. The same ones that used to make me kick and scream from rage and cry for hours and harm myself and so much more. I didn't get over it. All the grief that felt like it would kill me. And all the grief that keeps coming. It's been growing all this time. It's all still there under my carefully-made surface, and sometimes, it breaks through. No matter how much I explain myself, no one understands this side fully. But I guess I never really explain it all. The extremely complex trauma and all it has come to encompass. It goes so far beyond medical/hospital trauma, where it started. The over-generalization of complex, prolonged traumas.</p><p>Oh! And GI. I had one loose BM today. It felt fine. I think the inflammation is less. Ended up taking 9 magnesium capsules, but spread out a bit. Hopefully, that will be the right amount, but I won't know until tomorrow. No sorghum today. </p><p>June 6 Ugh 😩. Can that sum it up? I'm still in a bad space mentally, and the physical isn't helping.</p><p>POTS-- I hate that I have this again. I actually thought with some combination of aging and lack of hormones and remaining active and avoiding trigger foods, I had overcome it. I had. But it's back with a vengeance. This time, no meds or salt supplementation to help. Perfect. Heart just pounding and pounding away. I always got flares with a fever, and I still have an elevated temperature, but that is starting to feel permanent too. I'll try not to be dramatic. Circumstances change. I could trade these symptoms for something else someday. Ugh, looking back at a year ago, photos of my vitals with my thumbs-up, showing that I felt good running 80/50 with a heart rate of 55. Oh, I can almost remember the calmness I felt in my body at that restful resting heart rate. That was a sweet spot for me. Now is just overstimulated madness comparatively, and seemingly having progressed the last few days.</p><p>The cough today was pretty minimal until the evening after G's shower. That bathroom air was choking me. Luckily, I got fresh air access. This is not sustainable...and I'm still trapped. Anyway, the coughing calmed after a couple hours.</p><p>We talked to AireOx, and they said the filter is the same. But I can't breathe around it. Great. I'm just so happy to have my airway involved in the game again. They're sending out a different (weaker) filter that is just coconut charcoal. We'll see if I handle it. It's less powerful for sure. But options are limited.</p><p>GI-- I had one unaided BM again today. I took either 9 or 10 magnesium capsules during the day. I lost count a bit. I hope 9, because otherwise I could regret it tomorrow. I don't know how long it will take to get back to stability there, 5 capsules being my sweet spot.</p><p>Then, there's my arm. It's been really hurting today, with movement and at rest. I iced a lot. Maybe it helps? Then, I noticed something disturbing. When I straighten my left arm, a sac of fluid bulges out of the elbow joint. Just how I remember my right knee started. Damn. I'm still relying on my left arm for a lot, since my left hand is still the only one that can grip without terrible pain. But this will get more difficult. And there's no reason to think this won't progress to the other side. I could lose all my limbs in not so much time. Wtf am I supposed to do about that? I'm already accommodating putting less weight on my left hand on the walker, when it used to support most of my weight and steer. I've got a blanket draped over the right handle, and I'm resting more weight through that forearm to compensate.</p><p>This is all impossible and ominous. I can't allow myself to think where this decline leads to. I just can't.</p><p>I'm still staying conscious, but with potsy fatigue.</p><p>Weight down one more to 88. Temp 99.8.</p><p>My kidney/flank area varies. Not too bad waking up this morning or tonight. Jaw is the same.</p><p>When the reflux flares and I take baking soda water, I start coughing all over again.</p><p>Still exercising for my mid spine pain. It's not severe anymore (based on my skewed scale). The rest of me, I move whenever I can in ways that my body permits. But just self-care takes up most of that. That includes kitchen duties.</p><p>Getting around in and around bed is hard and getting harder with the left arm. My glass water bottles are getting too heavy for either arm. It's all doomed.</p><p>My book took a turn toward in-hospital medical care and "overcoming." I'm not enjoying that at all. But I've got no attention span for TV today, it seems.</p><p>We got scary news about our family pup, Dexter, today. They think it's cancer. 😔 Dexter was my little buddy, along with Buttons, in my recuperation at Mom's immediately after my last surgery. He was a very good pup to me. The tiniest , sweetest little fluff ball come to life. Things got rough for him, medically and behaviorally, but my soft spot never went away after our initial bonding, despite his behaviors (attacking my baby Wilma). I've barely seen him these last several years. He is more allergenic to me, maybe due to his skin condition. Of course, I wish I'd seen him more. I hope I still can.</p><p>***Editing note to say that it was a scare, but he is okay!***</p><p>Everything feels so negative, and I know I'm really unpleasant right now. I'm depressed, and it makes me irritable and reactive and just so negative. I hope the mood can improve somehow. Cause I suck to be around right now. And I have to be around me a lot. Plus my caregivers, who deserve so much better.</p><p>June 7 The pressing issue today is this elbow. I was sure it had to be a stress injury, because of, well, the stress. Two bum legs. Right hand unusable for 5+ months now. My left arm and hand have been a lifeline. I've felt the strain in my hand and around my elbow. The elbow has been my fulcrum for all movements to change positions. And my left hand in charge of pretty much everything. But it's been getting more painful and harder to manage with motion beginning to be restricted. I couldn't bend too far, and I couldn't tolerate putting my weight on it. But as of yesterday, it's progressed (god, I hate that word.) Now, it's following the pattern of my knees.</p><p>When at a 90 degree angle and at rest, it seems pretty normal. As I straighten the arm, a sac of fluid is forced out of the joint. You can feel it and see it. It's squishy. Along with this, I immediately lost the ability to straighten my arm. It used to hyperextend a bit. And this past week, it's been aching a lot. I was trying ice, but I can't tell if it helps. Similar to my knees, it hurts when out of its preferred neutral position, and it hurts when in use. This is how it started with my knees. Pain prevented kneeling first. Then that weird little sac of fluid and reduced range of motion. Increased pain, of course. And then one day, they just blew up with fluid and excruciating pain, and while the fluid is a bit less, the pain and limitations are extreme. There's also the pressure/bubble build-up inside the joint causing absolute misery and movement restriction. Funny: the fluid sac came out of my knee when bent and comes out of my elbow when straight.</p><p>It's not like it's terrible pain yet. But it has become limiting and brings dread. I've lived through the progression of my knees to torturous, deformed stumps. This cannot happen to my arm. My right hand is still hopefully in a healing process. Unfortunately, I'm starting to have some doubts, because along with the muscle wasting, it is difficult to detect swelling, but it's becoming more prominent in the bones at the base of the hand. There are also very faint reddish bruises, one on each side of my hand. It's still barely usable. I've made progress, but only because I've babied it so much. Already, it's having to work more, and the pain has increased. I need to keep resting it to get it to heal (if that's possible). But I don't have a choice. I have to use whatever combination of hands and arms it takes to complete a task. Flossing is one my two hands are struggling to coordinate. The right hand can't hold the flosser without too much pain, and the left elbow can't bend far enough without too much pain. This is just an example of a million challenging activities every day.</p><p>So along with that, my left hand is just starting to have some very early signs of similar pain and strain. I'm running out of functional body parts.</p><p>This shit is bleak.</p><p>For my records, 8 magnesium seemed a good amount during the day, but kicked in too hard at night. Perhaps I've recovered from the sorghum experiment and will return to my previous dose. I'm not sure if I'll be brave enough to confirm that the sorghum was the cause. And my cough is terrible, although not constantly. Just easily triggered throughout the day, and when it gets going, it's hard to stop, happening almost convulsively. No brainstem auras, although I'm sure it looks similar when the exhaustion takes over. But I'm still relieved from that. Heart rate upper 90s. Temp 99.6. I've kept the AireOx purifier turned off. The coughing lessens when I can let in outdoor air that's clean.</p><p>June 8 Tonight has been hell. Tried to hang out with G after his post-work shower. I couldn't breathe. Coughing was severe. So I ventilated. Despite the outdoor air smelling far from perfect, it seemed preferable to choking. It was not. I gradually let in a bunch of laundry air as it slowly poisoned me. The coughing slowed, but the pain built. A massive migraine was triggered. All pain spiked. Full pain crisis. No AireOx to help clear the air. I was grunting and screaming as so many movements caused severe pain. Finally sought refuge in the bedroom, where the Foust protects me. But the inflammatory cascade is already in motion. Head pain spreading throughout head and face. Bladder on fire. I cannot leave the room. I can barely move right now. My entire body is buzzing and throbbing and aching. Goosebumps crawling over my skin. It's only 12:50, so a long night ahead. Hopefully I'll be able to brush my teeth at some point. My heart rate is 110. Please let this pass faster. I can't take it. I hate scented laundry with the fire of a thousand suns and wish that everyone who uses it would fall off the face of the Earth instantly. Save me from one of my many tortures. Makes me wonder why I would ever leave this room again.</p><p>It's 5:20. A horrific night. My body can't calm. The pain won't calm. The cough won't calm. It's warm in the bedroom, but I'm hot and cold. Peed my pants repeatedly. Massive output. Reflux coming into my throat and mouth. By some insane mechanism, the baking soda water makes me cough more. Too many times to be coincidence or imagined pattern. But it helps the burning acid. Before this exposure, I felt run-over-by-a-truck exhausted. But that was okay. I felt restful. Now, I can't rest. I have no idea how or when I'll sleep. But I do know that it will hurt. No matter what I do, it will keep hurting. Tonight is a genuine pain crisis, and as you may notice, I rarely use that word. I feel a bit like the boy who cried wolf, because I've been complaining and reporting horrific pain levels daily. Well, you can always have a spike. An amplification, really, of every ongoing pain and ones I can usually ignore. This is the crisis level.</p><p>The cursed laundry smell has not left the living room. It has nowhere to go and no air filter powerful enough that I can tolerate. I am relying completely on continuing to tolerate the Foust and surviving in my warm room. No AC tonight. I can't risk letting any of that air seep into here. Air management had been going well before this. I was managing to let some cool air into the bedroom and spend time in the living room when the outside door was open. Use the AC mostly overnight. I don't ever want to open that door again. I can't do anything once I've let it inside. Then I suffer for my failings.</p><p>June 9 Last night shook me with the intensity. It is difficult for people to not truly understand that you have been in a torture chamber, and it is not okay. I finally slept around 6:30am. Many wake-ups. Finally woke up after 3:00pm. Awoke with shocking pain. Every movement hurt. Trying to get the covers off hurt. My kidneys hurt a lot too. A brutal amount of fluid loss overnight. I can't account for all of it, but it all came out urgently. The bedroom was 82 degrees when I got up, warmest so far, despite it not being a very warm day. I very gradually ventured out of the bedroom. I was so fortunate to find actual fresh outdoor air around 6:30pm, allowing me to eat in the living room and cool down. Coughing had been intermittent and less intense today.</p><p>I was very fortunate to have family visits this week. So fortunate to have people that care and put in so much effort to see me. We managed the challenges, and I figured out how to transfer from the walker to the wheelchair on the patio. I can't go beyond that, but I'm grateful it worked out (with the right mask). It's still not possible with anyone else. Most people can't get unscented enough. It doesn't really matter what they do. It has to be a drastic, comprehensive, long-term, permanent change from a conventionally scented life.</p><p>The dreadful news has been tonight. First signs of a brainstem aura. Ears ringing much louder, feeling heavy and eventually stuck, startling from small sounds. I think I barely stayed conscious. But it's 4:45 right now. With today's altered hours, I don't know when I'll sleep. I hope to stay conscious so I can get ready for bed when the time is right.</p><p>June 10 Left hand is starting to hurt more with straining, very, very similar to my right hand. Don't know how I'll problem solve my way out of that one. The simplest things like flossing my teeth and opening my water bottle are more challenging every day. I'm still relying on my left hand for any task that takes a little strength. And it still takes a lot of my weight to help me get up and down and move around. All that strain is gonna keep making it worse. My left elbow at least hasn't progressed. I have been able to avoid putting all my weight on it, so I'm sure that helps. But it still has the sac of fluid that bulges out when I straighten it. And it still doesn't actually straighten.</p><p>Today was warm and smelly. Stayed in the bedroom where it was warm but not smelly. Only slept 6:15 hours. I hope I'll be able to go to sleep earlier to try to fix my schedule...again. I'm back to a bedtime after 6am, so I'll try.</p><p>Early aura symptoms tonight. I took 8 magnesium. I'm needing to modify day by day. But the abdominal inflammation was gone today. No bloating either. My plaques are generally pretty soft and calm today, except for the one on my nipple, which is still at its peak.</p><p>June 11 Well, it was inevitable. I broke my June streak of staying conscious. But before that, this morning, as I was getting in bed, my lovely husband assisted me in removing my knee braces, like practically every other night, but the joint was so tender that I screamed out in pain, despite using the same technique as every other night. Not fun for either of us. I cannot put weight through a bent leg. It has to be "straight" to take any force. This is why the muscles have died away. They just can't be engaged in that way due to the enormous pain.</p><p>Today was cool and rainy. That change did mean more freedom, but surely contributed to my issues. So, around 7:00, I moved into the bedroom so G could come in and shower. And it just came over me. The assault on my system. I collared up and tried to get my spine and legs in a tolerable position. Because I was feeling the extreme lethargy combined with my heart pounding fast and ears ringing...not so unusual anymore. But the standout symptom before losing consciousness is getting startled by tiny sounds or changes in light. Extreme magnification of senses, especially sound. Also the tingling in my brain and body. This one was strong. It came over me a bit gradually, but there was no postponement possible. It fully took over. I was out for at least an hour, paralyzed for longer. I didn't come out suddenly, but my bladder did. While still extremely dazed, I needed to empty my bladder immediately. With my broken body moving so slowly, I was lucky to make it in time.</p><p>By then, it was 9, and I needed to get dinner. Watched a chill show with G, lights and volume low. That's when the coughing got started and wouldn't stop. Frequent, convulsive spasms. Continuing and worsening until around midnight. I dared to open the door seeking fresh air, and thankfully got it. The cough calmed pretty quickly. And I think it would stay calm if I had continuous fresh air access. Can't believe how reactive I've gotten so quickly. I miss my AireOx purifier. But the filter change is what triggered this flare of airway reactivity. I still feel like there are way too many airway triggers, and it doesn't even make sense yet. But oftentimes, what I can see for sure is that the coughing is way less when I'm the bedroom and less with clean-ish outdoor air. And going into the bathroom is a trigger. Eating seems to be a trigger. All food? I don't know. Drinking can seem like it too, so that's where I feel like I'm grasping at straws. But I have pretty clear episodes of severe coughing and other times with very little coughing. The coughing spells are so strong and make my ribs ache so badly.</p><p>I'm so tired of this. Will the auras continue? Go back to being daily? Or is it more from the weather change? Who knows? I only know that it controls me. My life is so much worse when this frequent neuro episodes. Always feeling on the edge of the next one.</p><p>Magnesium was a bit too much. My flanks were quite painful the first hour of the day. Bladder accidents overnight. (Thank goodness for pads. These are pretty minor leaks that occur when I'm already in the bathroom about to go, but unable to move quickly enough.) Temp is very low with the passing out. 98.1. Haven't seen that in a while. It always comes down when I pass out. We'll see if it comes back up. Heart rate was 150 when upright, 90 now. I feel so fatigued, but it is hours away from bedtime. It's not sleepiness. Utter exhaustion and burn-out and neuro fog. I feel so dazed again, and it does feel possible I could fall back into it. I feel my jaw hanging slack. The pressure in my head is high, and the ear/throat pain came back with the migraine.</p><p>My sleep number bed can't hold air so long these days, so I was relieved to inflate it again. It's a tricky process, since it has to remain capped to hold the most air. We inflated it as far as it would go. It's a trade-off, but preferable, I think. Went from a sleep number of 5 to probably around 90. You can't check, because the hose can't remain plugged in, or it loses air even faster. That bed is so much trouble for me while also being my safe space. It is all wrapped up in so many layers to try to contain the memory foam smell. I was grateful to have it for my attack today, and also grateful the air had been purified by the Foust. It was as peaceful as a full body and brain attack can be.</p><p>To name one good thing, my hands were a lesser complaint today. Maybe I just didn't try to do much. But no. Even pulling my pants up is a painful challenge. But today slightly less so. Still having trouble with my water bottles. Opening them. Even holding them with two hands is a painful strain. I don't know if or when I'll be able to go without the hand brace or rebuild muscle. There's just nothing there. But I think it will come back naturally if the pain decreases enough to allow me to start using it. But for now, the left hand is way dominant still.</p><p>June 12 The battle between indoor and outdoor air is constant. Indoor air making me cough. Outdoor air risking intrusion of contaminants that I can't remove and that torture me. I got lucky with outdoor air several times today. Even in the bedroom, my cough got triggered during shower time. It only calmed with the open window. The biscuits still seem to contribute to the cough, especially combined with the shower. Then I took my own Monday shower, after a long day of cooking. I got lucky with fresh air during and after my shower. But tonight, as soon as it started to rain, the outdoor air seemed to make me cough. The endless balance. But I know I'm lucky to even have a choice. There's no choice a lot of the time. Of course , it's the mold here, in addition to everything else. God, I know it's impossible to find somewhere with no new triggers. It's impossible to find anywhere. It's impossible to leave my patio. But I need a new place to live. I keep getting more reactive to the air here, even without fragrance or smoke intrusions. But every house has its own molds and fragrances and VOCs. I could never adjust. And there will always be new things to sensitize to. I'm afraid a house is not a solution. That nothing is a solution. Especially since I'm stuck.</p><p>Why did I change the purifier filter? Of course I know why, but why did it do this to me? Why did it sensitize me even more to the air? Can it possibly reverse? When did this cough even start? Can it possibly calm down?</p><p>Oh, that's right. This cough started with the fever after the March 28th house visit...the beginning of the end. Yet another reminder that house shopping almost killed me, and it's not getting better. I believe my POTS came back at the exact same time.</p><p>And what's supposed to happen if my throat closes or I can't catch my breath? All that matters is avoiding the hospital and having a way out if needed. I do everything possible to avoid medical care. I control everything in my power to manage this disease and avoid progression. I'm already doing it all.</p><p>Around 9:30, I got early aura symptoms. Not sure if they'll come back now that the rain started. Maybe they'll pass without a full-fledged attack. Or maybe it will build up just in time to interfere with bedtime. That's always a delight.</p><p>I'm skinny. I'm bony. My rings are falling off today. That seems to come and go with swelling or something. Temperature too. But they weren't falling off in winter. My abdominal swelling went down. More comfortable, but looks even freakier to see my ribcage. I've settled on 7 magnesium capsules for now. Satisfied with my BMs. Haven't yet returned back to my system before trying the sorghum biscuits. Again, I don't think it's a coincidence, but I would have to try again to be sure.</p><p>Well, now I'm just coughing. With fresh-seeming air. Can't stop coughing. Delayed response to my own shower? There are no answers! Except sometimes there are. So you keep looking.</p><p>Fever is 99.9 tonight. Cough is ongoing at 4:30am. Normally it calms down by now. And with most coughs, my right lower ribs subluxate. Just another delight. Heart is pounding hard at 95 too. My body is quite flared up and cannot calm down. I wonder if I'll stay conscious until bed.</p><p>It's hard to believe so many things are going wrong with my body. Surely autoimmune attacking on multiple fronts combined with mast cell madness. But helpless against it. I never wanted a slow death.</p><p>June 13 More of the same. The cough was calm most of the day but has gotten very bad tonight. It's essentially a constant sensation of needing to cough with plenty of spasmic coughs. Didn't really get going until the magic hour of 10:00pm. Shower time, and I soon eat my evening biscuits. Then I just feel the need to cough all night, sometimes violently. Fresh air helps. Bedroom air helps. Although today, any time I had the purifier turned off even for a short time, I started to smell mold even in the bedroom. I smell mold the moment I leave the bedroom next to the bathroom. I cough a bit after my morning biscuits, but I've been pretty lucky with fresh air during the day. I just want to breathe easy. It's not even hot today, but summer brings out these types of problems. Maybe when it gets hotter, being stuck in the bedroom won't feel so awful since the air is safer. Although I won't be able to let the AC air in anymore, and I'll have to keep the purifier on, so it will be hotter. That will be worse than it has been.</p><p>Flank pain and bladder problems persist. TMJ sucks. I've been on the verge of brainstem aura all night. Feels horrible. Heart pounding a lot around 90-95 at rest. Temp 99.7.</p><p>I'm still having problems with my head pillow in bed. I need more height. We've inflated the bed a lot, but this problem persists. I wish I could try out a bunch of pillows. All 6 bed pillows are already in use in my bed setup.</p><p>I'm trying to keep working through, but I feel so utterly hopeless and desperate and bone-tired.</p><p>June 15 Well, today brought more desperation. The coughing started during breakfast and kept up during the day, then finally lessened around midnight. I also had unusually frequent urination all day. I was only having this problem close to sleep hours before, but it was throughout the day today. My bladder hurts too. I got more of the early aura symptoms and even lost some time, but my body was honestly too unsettled all day to pass out. The urge to cough just sitting in my chest, never leaving me. The bladder. I only really want to be asleep anymore.</p><p>5am check in. I turned the ac on to prepare for a bit warmer day, and immediately started coughing again. And it smells like mold to me now. I've really never been aware of this scent before. But now I'm sensitized to it. Literally just since Friday, the day we changed the purifier filter. (Correlation/causation--impossible to know) I just became aware of the smell of the mold I live with. And I will never be unaware again. The only thing I did differently last night that could have led to such an aggressive coughing day is put the new filter in the AireOx purifier. They sent me one that's just coconut charcoal. Neither one had any scent at all. They said they off-gassed this one for me. But it can always be anything. Again, it could be totally unrelated, but I'll have to find out.</p><p>5:30 Switched the AC to fan only, and the coughing calmed again. It was so aggressive. Into the strong correlation category. I believe the reactivity is to both the purifier and the AC. All that's supposed to help my air.</p><p>There is no way out of this, and I don't want to see what happens next.</p><p>June 15 I understand that what I went through tonight has no effect on anyone or anything. That it was purely my own hell to suffer and endure. That if I don't speak it, no one would ever know. That even speaking it has no effect on anything. But at least it might be more real. Because inside of me, it's one of countless nights that leave a mark. They damage me. They break me. They make me worse. They make me more unpleasant and easily triggered and afraid. All I've been through and will go through contributes to my current state of irritability, rage, despair.</p><p>It's easy to say it was another brainstem aura. And it was. And every one is horrible in its own way. This one felt worse for a few reasons. This necessity of fully losing consciousness has been accumulating. So the symptoms spiked at the first chance. I put a collar on around 9:30. But I didn't have good head/neck support from my pillow positioning. I had a light on in front of me. Air purifier at full blast (so loud). I was getting sensitized to sound, so I stopped the show I was watching. but I should have better diminished sound and light and positioned myself better. Superhuman senses kicked in. Insane ear ringing over the blast of the purifier. Vertigo, nausea, heaviness. Startled by everything. I finally sunk away for at least a few minutes. But not long at all. Then, G came in the room and startled the shit out of me. He couldn't have known what was happening right in front of him. But he went about putting his laundry away while I stayed in a fully paralyzed but aware state. My brain constantly trying to escape into unconsciousness, but every sound startling me back with a torturous sensation of electrocution. This felt like it lasted days, but couldn't have been long. Maybe 20 minutes, although he left the room and the paralysis continued. During all this time, I felt desperate. Desperate to make the sound and light stop. Desperate to make my voice heard, to make my needs known. My need for quiet and darkness and head support. My head feeling unsupported also caused frequent startles, and made the whole attack even more reminiscent of the Neuro ICU. The noises. The lights. The head falling off sensation and the choking feeling I get when my head is back a bit. The inability to scream for help. That no one could hear me or see what I was going through and what I needed. I tried screaming today too. Over and over. I was trapped and powerless and terrified and desperate for it to stop. My brain did not get the break it was begging for. I felt no relief. I still don't. Sitting here in darkness and silence, I still feel my brain's need for escape. Today did not provide that. It's so hard to call it relief when I do fully pass out for as long as needed, because before and after, it's accompanied by all the same sensations, including the superhuman senses and startles and the paralysis and migraine pain that follows. But there is a sense of deflating some accumulated pressure when I've been fully out for long enough. I wish I could schedule these episodes for when I'm alone, put on an eye mask and ear plugs, turn off all machines possible, and then somehow just exist in this world of sensory deprivation that my body clearly craves. And just get it over with. Release that pressure a bit.</p><p>From the outside, the more dramatic things are more meaningful. That I'm at my lowest weight (down to 86), and my rings slide off. That my body is spotted and marked. The visible swelling. The horrendous coughing for hours on end. Even the low grade fevers and hypotension (although for me, it doesn't feel low. I felt more content when bp and hr were both lower than this. My body was at peace.) People (mostly doctors/nurses) care about the numbers and the visible signs, not so much the lived experience. It's harder to care that your heart is racing at 90 BPM day and night, when 55 is comfortable. Since technically, heart rate from 60 to 100 is normal. My abnormal feels better.</p><p>And by the way, I don't look good or well! I'm tired of hearing it knowing how ravaged my appearance is, much less the fact that the outside doesn't reflect all that's raging within. I'm just being friendly. If you saw my decrepit body in person, if you saw me attempt to move, you would know otherwise.</p><p>This world breaks me in every way. Body, mind, and heart. I am shredded.</p><p>Other updates: My cough was less today. Still moderate at times, but not as severe. Things I did differently: no AireOx air purifier overnight. No AC. I believe they both make a difference. I let in fresh air when I could. I couldn't avoid using the bathroom, which gets me started every time. The part I don't even want to write is that being near Mom feels like a trigger today. My newly sensitized moldy nose detects it. There's nothing to do about it and no changes that I would make. Just get fresh air access whenever I can, which is only really comfortable when it's temperate, but necessary year-round. This does make me feel more suicidal.</p><p>Today, my urination was amazingly normal. Minimal flank pain and no excessive or urgent emptying. Normal volume. I think a factor is that I needed very little baking soda last night, which means a lot less sodium. But tonight, my heart burn is worse again, so I will need plenty of baking soda.</p><p>The coughing is still moderate tonight.</p><p>My ear and face and jaw are hurting a lot...where the migraine is living.</p><p>My bite is worse, and the TMJ a problem more than ever with my broken retainer.</p><p>This is a body that has needed constant upkeep. Each component of this has spiraled out of control by going untreated for all these years. Seven years since my last hospitalization, after which I had to withdraw myself from most meds. No real care since then. No tolerated treatments. Just constant and accelerating deterioration.</p><p>This ship is still sinking. No way to bail it out. Just watch it go down.</p><p>My wishful thinking: that it isn't prolonged too long...that Mom and G could somehow not be affected. They give and give. No one could imagine all they give. They deserve the world. They deserve happiness. They do not deserve to watch this submersion.</p><p>June 1 It was cool today. 60s mostly. So nice. And actually what felt like clean air in the afternoon. I had my freedom. My cough wasn't too bad in the afternoon and even through the early evening. I lost access to fresh air around 6. By 9, still no fresh air, and the coughing got going. It was most intense between 10 and 12, notably right after G's shower, but also when I was attempting to talk. And also after eating my last 2 meals. The coughing was really strong during and after eating my biscuits, while also talking to G. I know it drives him crazy. It's incessant. It's hard to get out a word, much less a sentence or a story. It did actually calm down after he went to bed. But I was also done eating and talking.</p><p>I haven't used any air machines in the living room today, since all are potential irritants. Mostly the AireOx and the AC. :( There aren't really any more cool days coming, so it's about to get worse around here. I don't know how I can use the AC when it affects me so much. I want to let in fresh, cool air when possible, but it's not clean tonight. Smells like a combination of smokes and fragrances. I saw that our actual local AQI is unhealthy and all outdoor allergens are high. Not helping my cause. And then no air purifier in here? How am I supposed to do this? Sure, today I managed. But the air quality was good-ish during the day, and the temperature friendly. No AC needed. No seeping scents. That will change.</p><p>I honestly don't know I'll manage the hot bedroom days of summer. This has already been impossible. But I cannot stand the sound of the Foust blasting 24/7. It overwhelms me. But it will be my only protection. And then what about the heat? I just can't use the AC? And even if I do, I certainly won't be able to allow it into the bedroom if I want any breaks from the coughing. Ugh. I'm exhausted just thinking about it.</p><p>Tonight, I have some coughing that is really hurting my rib muscles, but not constant. That same flank area pain. I have bloating and heartburn. I have an irritated bladder. Not excessive volume today. Just the constant sense that I need to pee. My eye is recovering from an overnight corneal abrasion. All my bone/joint/muscle stuff continues. Improvements in my right hand seem to have halted. My left elbow is less acutely painful, I think because I've been accommodating it more and avoiding putting weight on it. But the fluid bulge is still there, and the movement still limited by pain. These things don't seem reversible. But at least no new pain locations for a while.</p><p>I feel that life has been very heavy this week for me and my inner circle. My emotional state has not been helping. I do my best to save up my light and my energy and my good times for when I'm with my treasured company. But I fail plenty. The storm raging within cannot always be contained. Last night, I could barely even say a word to G, such was the timing of my neuro symptoms. And he rightfully went to bed a bit early, seeing that I needed dark and quiet. Then tonight, I could barely talk through all the coughing. Truly. And all of this is ignoring the bigger picture, which is unthinkable, as always.</p><p>I wish for rest and calm and a bit of lightness. I don't know how that could happen. But it's needed.</p><p>June 17 Today was a quiet day. Meaning me. I was quiet. Not peaceful or restful really. Just muted. Seeing as how bad my coughing seems to be, particularly with the combination of eating and talking, I didn't do that today. I ate, but I barely talked. I especially didn't talk anywhere near eating. One of many cough contributors is my swallowing. I am not swallowing my food well. The crumbs hang around in my throat. Mucus is produced at the irritant. And it just kinda hangs around back there for a while after I eat. (About an hour?) So I silenced myself. Refrained from speaking. It helped. One more thing to be wary of. Why is my swallowing worse? I guess a neuromuscular function, which seems to be one aspect of this. But also, just my throat and cough reflex being so sensitized right now.</p><p>I've avoided the AC and the AireOx another day. It was warm. I got "fresh" outdoor air a couple times, but it got invaded each time. Tobacco smoke, barbecue smoke, fragrances. Tonight, the air is so cool, and I could avoid AC again if it were clean air, but it's not. Tomorrow's in the 80s. The whole week's in the 80s. I don't yet know how I'll approach air management, but as always, air quality has to come over air temperature.</p><p>Avoiding the AC and AireOx has significantly reduced the chest cough. That's been almost gone. It's the same sounding cough either way, but the root is different...from the throat or from the chest.</p><p>More early aura symptoms today. Irritated bladder. Bloating. Heartburn. Heart pounding hard and fast tonight. Not sure if the aura will hit in full. I'm closed up in the warm bedroom for now. It will be hard to sleep in here. I think it's already 80°. I've been sleeping pretty well for a few days. It will be harder with the heat.</p><p>Came back to add more. So many bad scents tonight. I'll be sealed up here in the bedroom. Currently, the living room reeks of skunk. I didn't even let it in! It just seeped in. So lucky for my unventilated bedroom of protection. My head is killing me now from smelling it. I had to brush my teeth sometime. And I've got no air purifier out there that can tackle that. No AC tonight. No ventilation. Just sealed in with my monster purifier. God, I hate the sound, but I need the filtering, of course. No brain rest for me. My bladder is killing me now too. We've gone years without skunk trouble. I hope it doesn't become frequent again.</p><p>4:30am Confined in this very warm bedroom. Garlic breath apparent in this space. It burns my eyes and mouth and crotch. So warm. So weak. Getting frequent sensation of being shocked. Monster air purifier on high, so my brain cannot rest. No usual distractions available, because I cannot handle any additional sound. Just sitting in the heat and audio overwhelm. Headache throbbing like hell. It is way too hot to sleep in here. And it's not even really hot outside yet.</p><p>Just went to try to clear out the skunk smell. Turned on AC fan only, and the irritated chest cough came back within two breaths. How am I going to survive without that? I need cool air, and I need to breathe. Same with my AireOx. It would have taken care of the skunk, but then I couldn't breathe. This will be a desperate situation. This 81° bedroom is impossible. And now I can't breathe, despite being holed up in the bedroom. Just a few breaths. It's almost 5. Not even close to being able to sleep. So much air management to do.</p><p>5:30. I've only been blowing outdoor air through the open door, and finally letting some coolness into the bedroom. And I'm choking on it. Spasmic cough is back. The air quality is too terrible, and this cough is clearly caused by everything. My head is killing me. The room has barely started cooling. I was hoping to leave everything opened up to sleep, but I obviously won't sleep if I'm choking on the air. I'll try to just wait it out as long as I can and then just seal back up to try to breathe and sleep. I've done so well with the outdoor air at times with no fan. The fan is to accelerate the cooling/ventilating process. But I guess it's good to know that maybe the outdoor air and the AC air are not so much different in triggering coughing. My options are roast and breathe or cool and choke. Great. Also, my body pain is nuts tonight. Shoulders and hips joining in the fun. I wouldn't call it a pain crisis. I reserve that label for multiple body parts at 8-10. But it sucks. Sealed up in this sauna, and no sweating. Broken, broken body. Roasting inside.</p><p>I don't feel confident about the current safety of the outdoor air, but I feel I have no choice. It's almost 6am, and still waiting for tolerable air.</p><p>June 18 Well shit. Each day's horrors bleed into the next. I don't know when I fell asleep. 7-ish with the ventilation still going. G woke up and helped me get in bed. I had fallen asleep with no collar and poor head support. But after that, I slept hard and long. I had a wakeup around 11? I thought. It's hard to tell, because I had a vicious corneal abrasion. I carefully applied more ointment and gel and hoped to sleep it off a bit. Put on a new audiobook (surprise! It's a book I read last year and just forgot). I did fall back to sleep and didn't wake til 3:30. Ugh. Luckily, G was around to help me bandage my eye. It has had to stay covered all day. Eye closed. Minimal eyeball movement. I was just pouring out tears and liquid from the left side of my nose. Just like a faucet. I don't know why this flare up with my corneas.</p><p>So, after getting dressed and getting going, I ate breakfast at 4. It's all a blur after that. I was in bed. Low lights and sound. Head pretty supported. I was NOT coughing. And as I'd suspected, my brain seized on the opportunity. I had very prolonged loss of consciousness. It felt less violent than other recent episodes, probably because I accommodated it well. Much less time paralyzed but aware. Less aggressive startle-electrocution reflex. It still didn't feel restful. It feels like a neurological episode for sure.</p><p>When it was finally done (I actually was awoken by a phone call and was initially speaking gibberish, I believe.), I got up and urgently had to go for food. It was 8:00pm-ish, and I'd only eaten a few biscuits all day. So in the next few hours, I ate smaller portions of lunch, dinner, and snack. I watched an easy movie with G. (Ted) He helped out by changing my fragranced bed sheets while I basically gave directions. Unbelievably, despite all the mattress encasements, that memory foam reek has soaked through. This time through EVA (shower curtain material). It is now saturated. I didn't have any other layers to add, so it will soak through quickly. How did it even absorb into that thick plastic? I'm still just putting a band-aid on that situation. I thought this was a fix but there is no fix.</p><p>Anyway, I cut off my eating at 12:30 (normally 11:30). I have no idea when I'll get to sleep. There's been very little air management today. I can't explain that. I'm airing out the bedroom still now (2:00am), mostly because of food smells on breath. Plenty garlicky. I can't be sealed in with it again. Last night was torment. For tonight, I'm out on the warm living room for now. Don't ask me how. It's hard to imagine my body sleeping when I've spent so much of the last 24 hours either sleeping or unconscious. But I honestly still feel head pressure and ear ringing and fatigue and therefore pass-out potential. I don't know when my digestion will allow me to sleep after consuming so much in so little time. The heartburn is just getting going.</p><p>My eye still hurts too much to be uncovered. I can't believe my skin has tolerated the tape all day. That's a surprise. I assume it's just that my histamine levels are feeling low. No itchy nose or eyes in a while. I'm not sure what to thank other than diet and avoidance. I used to scratch myself silly most of the time. My plaques itch, of course. But mild compared to previous itchiness. But I hope my poor eye can recover. I like being able to move my eyes, especially to read in bed. Also, my right eye doesn't see well. I'm actually seeing double right now with my one eye. It's kinda strange that my eyes are dry, because my facial skin is quite moist. And it's not the humidity or any air moving overnight. My eyes are swelling a lot, so I guess the tear ducts could be blocked when they swell.</p><p>I'm still trying to not talk and eat very small bites to try to help with the coughing caused by poor swallowing. This has been my lowest coughing day in a while. (I also wasn't exposed to much moving air.) In the bedroom, where I am not, with the open window, I was coughing. There sure is something in the air. Out here in the living room, I'm just enjoying the still air...and still not coughing barely at all. Just tolerating the warmth.</p><p>I sure don't want to redo this day, but it wasn't the worst. A pathetic statement on my life, to be sure.</p><p>I was attempting to watch the movie Sliding Doors earlier. Not sure if I'll try it again, because I now associate it with my neuro episodes. That list keeps growing. I'll just watch nothing. Brain rest feels pretty good. Not quite to the point of boredom yet.</p><p>Another warm day ahead. I'll just have to wait and see how the world or my body attacks me next. Please, no more skunk sprays. It's amazing how it filled our apartment even with everything closed up. Yet again, it felt like living a nightmare. I'm feeling so completely depleted. Maybe I'll sleep tonight anyway. This has all worn on me so much. Despite the pounding heart, I feel pretty much just like resting. Like I'm really fading away. I normally have a pretty high TV drive, to stay caught up with my stories. Just nothing is preferable for now. Maybe that means another attack is imminent. I'd better put on my brace and prepare for impact, just in case.</p><p>June 19 My day started okay. The biggest problem was the warmth of the bedroom. Still being silenced by my desire not to cough. Coughing was pretty low today. I do feel the mucus build-up in my throat when I eat, especially biscuits. And then the crumbs I'm eating sort of move upward toward my sinuses. And all those little crumbs are dripping down my throat, making me cough. Talking clearly makes it worse. Too bad my two most common times for company are while eating biscuits.</p><p>I surprisingly did okay, getting some fresh air, and able to be in the living room in the evening. That was nice. I took my shower tonight. That was really, really hard. I noticed that I cough the most the moment the shower ends, interestingly. Then, I can't dry off and get out of the bathroom soon enough.</p><p>My body pains are continuing to evolve. Knees the same. Right hand stalled. Shoulders, especially right shoulder, is popping like crazy. Bubbles inside. For now, they don't hurt much, but it's worrying. My hip joints are hit and miss. Sometimes I can spread my legs, other times barely at all. In terms of lifting the leg up or in front of me, the left leg is usually totally fine, and the right leg is usually restricted by pain, so I have to help lift it with my hands. Yes, it feels pathetic. My left elbow is less severe than it once was, but still limited straightening and a fluid sac bulging out. But the pain has moved down, and I have new pain in the lower arm bones with rotation. And then the left hand. I still rely on it for grip. I couldn't uncap my water bottle or put on my knee braces without this level of grip strength. But the hand pain is progressing. It's a terrifying prospect. My right hand truly can't help. My hands are bad enough that I'm using Ziploc bags with a slider instead of a zip. I have no idea how I do anything and no idea how long it will last.</p><p>My cornea is still healing. Upon waking up, I immediately apply drops and gels to my eyes before I even sit up or open my eyes. It's my first task. Some days, it feels impossible. I feel weighed down by the weight of a single top sheet. I truly feel too weak to roll over and reach for those eye drops, despite having done it by feel for years. I can honestly just barely move after lying flat. The pain is shocking. The weakness is too. All I have is will.</p><p>4:30am update: really bad. I strained my hands and arms and everything way too much in trying to close the bedroom window. My right front hip (hip flexor area) is excruciating. I'm coughing violently. The shower was rough on me. I also ran the AC for a few hours, trying to have a cooler bedroom for sleep and for tomorrow. All of that was rough on me. I can't get a clear breath. Coming from both my throat full of mucus and my chest now. The strain of coughing is causing excruciating pain in my hip flexor somehow. The shower. The use of the AC. The big temperature change. It all contributes. So, I can't expect to be able to open and close the window anymore. That will really limit my airing out ability even more. It was all I could do to not scream as I kept changing angle and approach to shutting the window. I'm losing my left hand. Not immediately, but it's going. I don't know how I can baby it how I baby most joints. I need it. I also take back whatever I said about my left elbow. It's worse again. All my muscles are seized right now. This cough is terrible. So much mucus. I already rinse my sinuses daily, and that used to deal with this problem. It's progressed, and it's hard to breathe. Oh, that word again. How many times have I said I can't handle more progressions?</p><p>June 20 I tried GF oat flour biscuits today. Not for the first time. I believe it made the post nasal drip less severe. We'll see how it goes. Don't want to pay extra if it's not necessary, but it sure sounds like something my body would do, despite having spent years on and off of GF diets without noticing a change previously. I'm also eating very carefully (tiny bites) and trying not to talk.</p><p>Well, a lot has progressed. My left hand is now braced. The brace I have has only been off-gassing a couple months, so it still smells pretty bad. I can no longer trust my left hand for the same tasks. Everything is harder.</p><p>Then, my left knee is also worse. Like in the early days of my knees going bad, when my right knee would have an enormous pop upon sitting. That happened today with my left knee. I normally put more weight through my left, better knee. But the left knee has gotten crankier. That pop made me scream loudly, then moan and shake. If I could have curled up in a fetal position, i would have, but I can't. So I just sprawled in pain.</p><p>Today's desperate problem-solving purchases: enormous mylar foil bags to attempt to wrap my mattress toppers, since the smell has saturated the EVA plastic layer. I guess I could just keep replacing that layer. But I bought the foil bags. I have no idea if the foil will remove all comfort or make too much noise. But it will block the fumes. Otherwise, it's the polyethylene moving bags for wrapping. I already know that destroys the comfort. My bed: both the fumes and the comfort, is an everlasting source of distress.</p><p>Next, I have to give up my glass water bottles due to the weight. My hands can't handle it anymore. I ordered some supposedly safe plastic bottles. Desperate times again.</p><p>Mom will be bringing me a couple polycarbonate cups to use instead of my heavy glasses, since they also hurt too much to lift. And she'll also bring a seat cushion for the chair in the bedroom, in case I'm forced to eat in here and sit in the uncomfortable chair.</p><p>The AC is making me cough again tonight, despite being in the bedroom. But not as intensely as last night...so far. It's always dangerous to write before 2am. There's so much remaining time for disasters.</p><p>Doing my nightly cooking was so hard today. I made quinoa, which is the most work-intensive food I make. It was very hard on every part of my body tonight. It hurts so much to lift 3.5 lbs. of quinoa in a 2.5 lb. bowl. Sounds pathetic, I know. To lift that bowl in and out of the microwave. Repeated straining during the cooking process. I cook and rinse carefully to remove the saponins, and I cook in a ton more water than usual to make it really tender and easy to chew and digest. I make excellent quinoa, but I have to earn it with pain.</p><p>No auras the last two days. The mega one Sunday seemed to temporarily get it out of my system.</p><p>I missed my Spanish group today due to the knee pain delaying my food. The next two days will actually be private tutoring, so I'm really hoping my body cooperates.</p><p>But Thursday, I have a psych appointment. I really resent having to go. It will really mess with my day. I'm honestly normally eating breakfast at 3, and I really don't want to make that any later that day. The day honestly sounds like too much. I wonder if I should cancel the lesson. Probably, since I need the appointment in order to keep getting my Rxes. How annoying.</p><p>My poor hubby cannot sleep with me coughing incessantly beside him. But having the AC on makes me cough...a lot. And this is the only time of day I let the AC into the bedroom. It's miserable. But there aren't as many scents at 3am when it's cooler. Although the lobby cleaning will likely be tomorrow and add more scents, which prohibits any airing out of the bedroom for 2-3 days. How is it possible to go on? I need to breathe, and I can't turn my bedroom into a sauna by keeping it fully closed. And G needs to sleep. I'm ready to check out.</p><p>June 22 Pretty dazed. I had a rough brainstem aura 9:45-11:45. But I knew it was coming by 6:00. Early warning signs were there. So I got really ready this time. Phone silent. Husband warned. Sound and light low. Ear plugs and eye mask. Tried for good positioning. I've never tried all of that. I thought it could be a bit more restful. It was still terrible. Heart pounding so loud and hard in my ears. The nausea was intense. I was still in and out of consciousness. Again, it felt like it went on forever. Absolutely not restful! I'm feeling like utter crap now at 3. My schedule is off. I haven't done my overnight AC yet, because I can't take the coughing and the noise. My brain aches. The sense of nausea continues.</p><p>We're still under air quality alerts all week. The weekend will be even hotter. The bedroom is staying around 81 degrees most of the time. I guess it's time to go cool it again with the ac and air purifier blasting. Hard to breathe and chaotic to my senses. There's plenty more going on, but this wore me out.</p><p>It's another garlicky breath night. It makes my eyes burn and bladder burn and I'm pretty sure I feel it in my chest too now. Hoping I can air out enough. It's almost 5am, and I haven't been able to cool and air the bedroom enough yet.</p><p>June 23 Dealing with a deflating mattress. I think it's probably been deflating for quite a while. But currently, it goes from full to empty in under an hour. But it hasn't been holding air well for a while. Surely contributing to my body pain. Waking up being agony and all. Due to leakage, we capped it off a few weeks ago, so I haven't been able to check the sleep number. I thought it was capped while practically full, but I am doubting that it stayed full. Andy helped me today to do some experimenting, and it seems like the worst result. I'll be sleeping on the empty mattress tonight and who knows how much longer. I have a mattress at Mom's house. But of course, it's no easy feat to transport two mattresses. 😔</p><p>And tomorrow's a hot day without much of a cool down at night. So I'm really miserable. Bedroom was up to 84 while I slept and the first hours of the day before I was able to get out. The fresh air isn't even close to fresh...air quality alerts. But I don't have much alternatives. But then tonight I had to seal up again when laundry air got in. Of course, as soon as it cooled down. I've just got the one purifier I can use now...the heater in the bedroom. (Not really a heater, but might as well be one.) It saves me. I'm trying to run the AC all night with the door open to ease the pain tomorrow. Although I know it will heat up all the same.</p><p>June 24 Unbelievably exhausted. So much. Sleep was horrific. I've never slept on an empty mattress before. I've slept on it low, but not empty. I had to lie out pillows in a line, but still so out of alignment. Andy and Mom did the heroic task of replacing the insert themselves today with the one from my bed at their house. From what I can tell, it is holding firm! But I am paranoid and afraid to let air out. But tonight promises to be a more comfortable sleep by a mile. So grateful.</p><p>Right before that, G came home from a conference dead on his feet. Tested. COVID positive. Devastating. To protect me, he immediately left to quarantine in a hotel. And then I was alone, and I will be alone. G is in charge of end of day necessities as well as my sunrise bedtime necessities. Basically, he comes home from work, helps me, sleeps, and then helps me again. I haven't been able to compile a list of all he does. Mom will help out as much as possible on the afternoons. But I am without my overnight caregiver (and life companion). Devastating. And terrifying. I have already injured my left hand worse trying to do things that he would normally do. It was opening a gallon of water after hauling it several steps without my walker. But opening it is what really hurt me. I'm not sure my left hand will recover. My saving grace was that my left hand didn't yet hurt between the thumb and forefinger. But now it does. There's a real possibility I won't be able to remove my suffocating knee braces. They are so tight, they leave dents and bruises. I need them, but at the end of the day, I can't stand another minute. But it takes so much hand strength. He also puts my neck brace on for sleep. There are countless other tasks that have become the norm for him to handle. I miss him. However brief, his nighttime company is irreplaceable. I worry for his well-being. He is extremely well-vaxxed, having been part of a trial for an extra booster. But the symptoms did seem to hit hard tonight. A cascade of them over the course of a short phone call. Of course, I worry that it will hit me too. But even more presently, I worry simply about getting myself to bed unaided.</p><p>I am beyond exhausted from a very long day of cooking in a very warm apartment with a storm and a pressure drop. My head pressure is bad. We've had a steady barometer for a while now. But it gets a bit bumpy for a while. I'm exhausted and scared and overwhelmed and sad. It's clearly remarkable we made it this long without anyone in my innermost circle contracting it. It is beyond imagination how on earth I would deal with that infection, or any infection really. Barely getting by is an extreme understatement. Basically withering away in excruciating fashion is more like it. That's my baseline.</p><p>I'm past the point of tolerating light and sound today, so just sitting here in the quiet basically. (Except for the noisy AC) As the apartment cools down for the night. Cough on the milder end. The aching in my back from the mattress trouble is bad. I could use a three hour massage, although most of my body can't really be touched. Nerve pain in my feet is acting up. Very concerned for my deteriorating left hand function. Opening a gallon of water nearly broke me. This task is normally handled for me, but I could still do it until a couple weeks ago without causing real damage...just too much strain. Now, I feel I need to avoid ever trying to open it again to try to preserve my hand. Flossing will be hard tonight. It's a difficult two-handed task.</p><p>I feel my jaw going slack. Definitely fading away. How will I manage these nights alone? And how many nights will it be?</p><p>Grateful for my bed. Grateful for Andy and Mom and Gustavo. Missing my honey.</p><p>June 25 I want to sum up, but it's so late. Being without my overnight help sucks. It's so hard. I hate that he's so sick, and I can do nothing.</p><p>My bed is fixed! I still am having trouble finding a fullness for both lying on my side and back. Continued trouble with alignment and pillows. But I have a bed where I can experiment and try to find a working solution.</p><p>I'm pretty convinced the sorghum biscuits led to the GI inflammation and rectal shut down. Sorghum was the only novel ingredient.</p><p>I'm pretty convinced switching to gluten free flour has been great. I'm so afraid it's a placebo effect. But I'm eating and swallowing easier with less coughing from biscuits. I guess even trace gluten has become an actual food allergy.</p><p>I've been running my AC for many hours at night. There was a terrible building fragrance today, but it's lessened for the night. My coughing has been more manageable. My heart rate hasn't changed, but it was pounding less today.</p><p>Everything else is continued terribleness. Only managing overnights all alone.</p><p>Feeling extremely alone. Being even more isolated than I already am feels desolate. I know it's not forever. Yesterday was day 0 of his quarantine. Today was day 1. I'm not sure how many days we're actually planning on. Of course, he has to be symptom free and test negative for consecutive days. I think that's the plan. For now, he's going through it. I hate it. I love that man, and I miss my partner.</p><p>Wow. I wrote a lot. I'll just share one photo my mom got of my leopard spots. They are all actually fading right now, that outbreak apparently ending. There are so many more, but this is the only photo modest enough to share. Me, modest? Haha. My temp has been staying around 99.6, and my heart rate near 100. So I don't know what that means for the state of the flare.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRq6iF9RkxSQ5loXr_apGvZo_qubYFtDy70inxMhF54ORVsUmLXqs_wcyT1MnF3z1vm9AkELZyUycN6o1MyOgm0rQQiq9exBzMn31jgzMmvgnW0zd1MjzockDI8HKuTAuCYOow9q2RFWJiOQjDXoa6BLZHEcEUtHtDyAiqMR9XHynhSPHykpQaKGdmL9w/s2048/IMG_8645.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRq6iF9RkxSQ5loXr_apGvZo_qubYFtDy70inxMhF54ORVsUmLXqs_wcyT1MnF3z1vm9AkELZyUycN6o1MyOgm0rQQiq9exBzMn31jgzMmvgnW0zd1MjzockDI8HKuTAuCYOow9q2RFWJiOQjDXoa6BLZHEcEUtHtDyAiqMR9XHynhSPHykpQaKGdmL9w/w480-h640/IMG_8645.jpg" width="480" /></a></div><br /><p>Thanks for reading. Thanks for caring.</p>Carolyn Medranohttp://www.blogger.com/profile/02811093427920453122noreply@blogger.comtag:blogger.com,1999:blog-833972720679789479.post-17926635606885785112023-05-31T03:17:00.002-05:002023-05-31T03:18:37.522-05:00Daily Journal May 2023<div>As I've been doing lately, I'm just sharing my late-night journaling, where I process my days. I type these in my phone, since I can barely type on the PC. Sometimes, it's just stats, and sometimes more reflections. I've put some parts in bold for my own reference.</div><div><br /></div><div><br /></div><div>May 3 I overbooked myself tonight, cooking a batch of quinoa and taking a shower. My fever was 99.5 before but up to 100.3 now (4:30) with chills. Feeling really feverish. Yawning hurts my jaw a lot.</div><div>After a real rough time in the shower, tonight, my knees are swollen, but sitting and standing has been easier, weirdly. I hope that sticks around. Jaw pain and cough are irritants tonight. Hand pain is still very subtly improving. Hard to say about my overall state. No brainstem aura today, although plenty of stupor. Still savoring the low temps while I can.</div><div>I wish I could get in and out of the shower easier. It's so hard and very precarious. I just absolutely cannot risk a fall since there is no treatment for any injuries for me.</div><div><br /></div><div>May 5 Temperature came up today. High of 79. Bedroom was 78 while I slept. Of course, warmer weather means smellier indoors. It was that in-between temperature where I go back and forth between rooms. I ate my meals in the living room with the fan ventilating in my face. Spent the time between meals in the bedroom where the smells are better filtered. My fever has been lower today (99.2-99.5). But my post breakfast heart rate was 116. Yikes. That was a bad sign for me. My digestion also took a pause, which I can see is a sign. I did all right until about 6:30. That's around when the brainstem aura started. And it went on and on. Repeated loss of consciousness all the way until 8:45. Ugh. Absolute misery. I came around slowly, knowing I needed to eat quickly. I couldn't talk, but I painfully gathered my food and ate. I felt so rough. I got a heavy over-temple headache, felt nauseated, bad tinnitus, stuporous, irritable.</div><div>I was lucky for more clean air for ventilating today, to help make up for that indoor nastiness. Rain is coming in a few hours. I suppose my body was letting me know, although sleeping in a warm bedroom didn't help. Tonight (4:00) fever went back up to 100.3 and digestion resumed, so my body's falling back into its usual rhythm. Hot chills. Cough. Very achy head. Hips are hurting more.</div><div><br /></div><div>May 7 I didn't write yesterday, because it was practically a carbon copy of the day before. Same horrifying aura in the same window. You'd think you'd get used to it, but it never feels like something you could get used to. Similar the rest of the day.</div><div>Today, a slightly different schedule for a lot of the same stuff. Usual unbelievably painful wakeup. Although I divided my sleep in half to allow for the weekend schedule. I slept enough. Started the day late. I finally noted the timing of my morning routine, and it now takes me 40 minutes to complete. Bathroom trips. Getting dressed, including knee braces. Washing my face and some body parts with a baby wipe. Applying milk of magnesia deodorant. A light tooth brushing with water. Maybe open the dishwasher to dry. Refill my water and grab my biscuits. Then settle in wherever I'll settle in. I usually listen to one of my Spanish podcasts during that time. It is so exhausting. And it takes so much longer than it should due to my reduced ability to move and incredibly slow pace.</div><div><br /></div><div>Anyway, today after my "morning" routine, it was about 3:00. It was a warm day (83?), So I was in the bedroom. By about 3:40, I'm guessing, <b>the brainstem aura began. I already knew it was coming from the day's bad omens. Digestion paused. Brain tingling. Ears ringing. Heart pounding. All predictable. Then, sound got amplified, and I kept getting startled. My body got really heavy. I realized I had missed a chunk of the show I was watching, so I gave in and stopped the sound, put on my collar, and waited it out. It was a very long wait. I think around 6:10, I finally started to come out of it. I had ins and outs, but was paralyzed the whole time with falling sensations. I lost large chunks of time. </b>Three days in a row now with these huge chunks of time lost in such a state. I pretty much blame the temperature change, barometer, rain. Tomorrow should be better, maybe.</div><div><br /></div><div>The rest of the night has been normal. Obviously, I have layers of migraine pain now. Fever back up to 100. HR 90. Digestion resumed, although it's a mess after all this.</div><div><br /></div><div>I'm still having urgency troubles with my slow bathroom time. G helped me out a lot tonight. Nothing major. Just so many of the little things that I used to take care of myself. I feel grateful and also frustrated and like an enormous burden. Like he didn't have enough to do before? Ugh, I hate it. I hate to think of all the things I took care of before that are now shoved onto him with me having to ask for favor after favor. Ugh.</div><div><br /></div><div>The last thing that happened was I ran the AC last night. For many hours(10). The living room was hot and humid with the bedroom even worse. But when it's on, I absolutely cannot stand it. It is deafening. Literally feels mind numbing. Louder than our mega air purifier. Plus, I can't take the cold breeze. I put up with it for ten hours last night, unable to listen to anything or think much of anything, all to try to get the bedroom cooler for the next day. Fell asleep under blankets, then had to get up to move to bed. My muscles were completely rigid from the cold. All clenched. I could barely move until I started shivering violently. Making my way to the bathroom and to do my bedtime routine was almost impossible (more than usual). It was only 67 degrees, but normally, I would need winter clothes for that indoor temperature. Layers of it. I was barely dressed from the heat of the day.</div><div>And I still woke up in a 77 degree bedroom. Could be worse, but that type of temperature change during sleep is rough.</div><div>So, I need to reassess my cooling plan. Tonight, I'm going to try only one horrible hour of that blasted air. I appreciate when I can use it, but I can't tolerate the process of changing temperature. So I'll try just one hour tonight. See if it does anything. The bedroom is pretty hot and humid, so even though tomorrow is a cooler day, I should run it some. I should be more grateful for days with access to AC, since there are so many without it.</div><div><br /></div><div>May 8 A cooler day, but with low pressure still. I didn't get to sleep until 6:30, and then my sleep was disrupted by bladder needs. Both wakeups were urgent. But my body doesn't move urgently. I don't believe I know any faster way to get out of that bed and to the bathroom. It takes at least several minutes. Anyway, the day started the same. Same terrible pain and fervent death wishes upon waking. But I got to visit with my mom, back from a very short trip, which was so nice.</div><div><br /></div><div>But my heart rate was 108 after breakfast. Bad sign. I seriously don't know how to keep facing days that are so intensely punishing. The heart rate was the sign that the aura would come later. And it did. Around 7:00-8:30 today. All the usuals. I have found that the less sensory input, the less aversive the experience. So I put on my collar and stop all sound and light that I can. The rigid collar is best. And the recliner is best. There are way too many ways to end up in a bad position in bed, given that nearly every position is bad. It's still a challenge during sleep, trying to get my legs in a tolerable position that won't cause agony.</div><div>After the aura, or near the end of it, the migraine pain set in. Strangely enough, my actual head pain has been less intense lately. That used to be my primary symptom. I don't miss that degree of head pain. But today, it was more elevated. The layers of migraine, including over my temples, in my right jaw, and in my left ear. But the new layer is left sided near the back and more intense and constant than some of the other layers.</div><div>All of today, my cough has been bad. And tonight, my fever's up to 100.3. I'm weary and scared to face another day. I can't keep doing this. I need it to stop.</div><div><br /></div><div>May 9 Well, shit. I had a devastating realization today that I don't want to admit could be true. My coughing and wheezing might be being triggered by my biscuits. An absolute staple food for me whose recipe has been simplified and perfected that I've tolerated for a couple years(since they discontinued my cereal, and we desperately sought a replacement) and got me out of the crisis weight zone (although I'm already dangerously close again). I cough starting with my morning biscuits for an hour or two, depending on the day. I have reduced this to a pretty small portion to try to improve my schedule, so maybe that's why the reaction is milder in the morning. I eat less. (So I get hungry for lunch sooner.) And then, most of the day, I don't cough much. By the time I go to eat my nighttime biscuits (10:30pm), I'm not coughing at all. But today, it was particularly obvious that the coughing and wheezing started with my first bite and went throughout my eating time. Then, I continue coughing with a little less frequency for a couple more hours. When it stops depends on the day, and presumably the level of histamine or something in my body on a given day. It feels kind of like I'm choking on tiny bits of my biscuits. But it's not that, because it continues. I have no idea what I will do for my diet. What I can do for those calories? I don't know any other grains I tolerate besides oat. And they contain oat flour and oat milk and olive oil. I am currently at a loss (and still coughing at 3:30). I mean, for now I can survive this reaction, but these things progress, and I won't be able to risk something that affects breathing (early anaphylaxis). I'm afraid my pounding, fast heart rate could also be associated, although that could just be from the fever. The association wasn't even clear to me until now. I'm afraid this will be a time of experimentation, and that has gone badly for me in the past- a single taste causing a setback. I have successfully added foods, but not grains. Just vegetables, actually. Grains have always been very tenuous. But me without grains=💀. I become skeletal. I'm already quite close right now, but I technically have some body fat. I can't let that go. I don't know what to do. I guess it's not quite urgent, since I've been surviving this cough since March 28th. But with the timing becoming more well-defined, I'll really have to find an alternative, because that's progression. God, I love my biscuits. I love how they taste. I love that there's no prep time/energy. I love how easily they go down digestively. They help with regularity and don't seem to cause heartburn. (I have heartburn every night, but not after my breakfast biscuits, so I don't blame them.)</div><div>Of course, I understand it's possible and even likely to develop intolerances to food you eat daily. But my body generally has really appreciated regularity. Even a change in the order in which I eat my foods can ruin my day. How am I supposed to change such a staple? And to what? I've been through this before.</div><div>I'm going to try to save that concern for another day. I won't make an immediate change, because I would starve. I've done it before, and I don't want to go back. Goddamn there's that part of me that just thinks, "Well, if the anaphylaxis gets me, you can't say I didn't do my best." But I know very well the horrors of anaphylaxis, and this is very early stage. Nothing would be quick and easy. And I would end up in a hospital, which is a worse nightmare than death by anaphylaxis.</div><div><br /></div><div>Anyway, today, I dealt with the coughing and pounding heart (HR98), jaw/ear pain, back pain, obvious impossible leg pain, and then I fought off a stuporous state all day. Managed to avoid loss of consciousness, but my body was trying. I had yawning spells and sound amplification. But it fortunately didn't progress today. I showered today, so I'll likely be up later. Fever is 100.3 tonight. HR 92. Pretty consistent. I soaked my bed in sweat last night. I hope to not do that again. But tomorrow will be a warmer day (76), just warm enough to likely be confined to the bedroom during the day.</div><div>Oh my gosh, I can usually put things out of my mind incredibly well. But this one feels like doom. Those biscuits have honestly been a lifeline. I don't want to starve again. I'm already way underweight, but at least I'm not starving. I've actually noticed decent hair and nail growth, which only happens with decent nutrition. Why would my body fight what it needs? I know that I don't particularly tolerate most of my food, and that tolerance can vary over time. But this seems to be a consistent, new reaction, and I can't ignore it for long. Goddamn.</div><div><br /></div><div>May 10 Well, today was a tiny relief. I believe I owe it to the barometer finally being stable and at a happy level. The only symptom I didn't have at all today was the brainstem aura, which is HUGE for my quality of life, although just one of many components. I was so conscious, I actively participated in a debate in my Spanish class. And it was fun and easy! My previous class last Thursday, it was all I could do to keep my eyes open with the volume at its lowest setting. I was genuinely alert nearly the whole day. What a change.</div><div>My post breakfast heart rate was 89! And tonight, it's 86. I haven't felt below 90 in a long time. My daytime temp was 99, and tonight, it's only 99.5. I'm sensitive, so I still feel hot/cold chills a bit, but it's better. Every other symptom feels a little lighter today. My knee pressure and ability to stand up was a little better. I coughed during breakfast and again tonight. But much less than the violent coughing of yesterday. Interestingly, just as I approach making dietary changes, I noticed a slight difference today. I coughed, just twice, before even eating my nighttime biscuits. And what I noticed was that my reflux from GERD was very bad at the time and approaching my throat. A chronic cough that gets worse at night can come from GERD, especially when it comes up toward your throat, like with LPR. I've always had GERD, and since it's been untreated, I've often progressed to LPR. So that could be contributing greatly to my cough. However, as I sit here tonight, my reflux is bad, and my cough is not. So it's a light correlation for now.</div><div><br /></div><div>This gives me further experimenting to do, none of which I want to do, because I don't want to change my food routine that feels reliable and comfortable.</div><div>I had already planned on tomorrow being a day without biscuits. I need to eliminate what is coming from that, if possible. Although I won't know what baseline to compare with given how today went. But the plan is to eat my plain potato when I would normally eat biscuits. Both times. And just see how it goes.</div><div><br /></div><div>Another idea I'm thinking of for another day is making biscuits with sorghum flour, olive oil, and water, replacing both the oat milk and the oat flour. I have no idea how it will bake or taste or of it will even be edible. But it's an idea. It's a new grain for me, so it could go either way.</div><div><br /></div><div>Finally, with this reflux cough idea, the only thing I can really think of is pureeing my food. I already follow all of the GERD rules to an extreme. I don't lie down all day, and then I still don't lie down until 6-8 hours after my last food. If I pass out during the day, I stay sitting up and put on a collar to support myself. Never lying down. And I don't have overnight reflux. I don't go to bed until that has calmed down, even though many nights it takes a lot of baking soda water to do it. 6-8 doses usually. I know from past experience that I have GERD with any diet. But maybe the amount of roughage, which is more than I ate most of my life, is too much. But it's key in my diet, so I can't eliminate it. And I already steam my food pretty well-done. I really don't want to head down the slippery slope of decreasing portions. So all I can think of is pureeing the roughage. Mostly carrots and broccoli. I guess I should include my asparagus too? I can't imagine even being able to get out and use and then wash my food processor even once, much less as part of my cooking routine. Sounds impossible in my current state. So this would be a big task.</div><div>But I am short on ideas, and it's probably something I should experiment with.</div><div><br /></div><div>I'm so afraid of losing any further weight or strength. My BMI is currently at 14.8, which carries very high health risk all on its own. (Although I have to go based on my height when my legs straightened. They don't anymore.) I've still got depressed hormones with amenorrhea. So I will keep pushing through and trying to find food my body accepts better. I really hate pureed food, especially broccoli.</div><div>Oh well, tomorrow is a no biscuit, extra steamed potatoes day. We'll see how I react. Of course, there's another factor, that tomorrow is a warmer day. So it will have some extra challenges.</div><div>In any case, I am grateful for the lightening of my load, even if just a bit today. If you are reading this, do not get your hopes up! Please. My body is very disappointing. And disappointment hurts. I can't handle those hopes.</div><div>The caveat is that this is not the first time I've had episodes of skin patches, fever, and increased pain. It is many magnitudes worse, but not the first time. And those ended up being episodic. So there is potential that this will be episodic, although still progressive/degenerative over the arc of time. Anyway, I am gently aware that it could let up. But I'm not holding my breath, and I get to be pleasantly surprised if it happens. For now, today was just one day, and a little relief is a little relief.</div><div><br /></div><div>May 11 Interesting day. I did the no biscuit experiment. Ate plain white potato with a little oil instead both times. I had a little coughing after breakfast, but not much. I had even less coughing after my nighttime potato. But I am hungry! But there's been some coughing as the night went on. Contributing factors seem to be: reflux and my nasal rinse. <b>Basically, I think my cough reflex is sensitized and gets set off by a number of things, the biscuits being a major contributor.</b> But it was amazing to be able to be on a phone call as I ate at that time and not cough throughout.</div><div><br /></div><div>Today was a warm day in the bedroom until a pleasant air-out around 8:00. I did well with consciousness. My heart rate had some high elevations today though. Up to 115 at times. Fever has been low. 99.3 tonight. Not sure if it got higher.</div><div><br /></div><div>There's some rain coming through tonight, and I'm starting to feel it with neuro symptoms here at 4:00. It would be pretty late and confusing to pass out right now. But sound is amplified/startling, and ears ringing a lot, along with feeling heavy. My neck is in spasm too.</div><div><br /></div><div>I feel like there are signs of this mega flare lessening, but I have no idea what damage is permanent. I've got some more prominent psoriasis patches. My knees seem permanently damaged, but they seem to have less fluid in them than they have for months. But the aching is so bad, and the stiffness and mobility seem the same. Fevers are lowering. My injured right hand is healing ever so slowly, although the pain is also increased in the outer part of the hand. Typing on a keyboard is too hard right now. I'm not sure what else. Don't want to get ahead of myself. More food experimenting to come. I can't say anything definitive yet. I'm certainly scared of the prospect of losing a staple.</div><div><br /></div><div>For tonight, I'm hungry. I guess I didn't make up for the calories well enough, and not the nutrition either. I hate being hungry when I have to fast for 6+ hours before sleep. But I'm also never tempted to do anything about that hunger because of the heartburn.</div><div><br /></div><div>May 12 Well, I went back to eating biscuits today. There was a bit more coughing, but no violent coughing. Nothing conclusive. I have new sorghum biscuits to try, and food trials have to be done very carefully. I think I'll try a crumb tomorrow. My fever was just 99.1 during the day and 100.2 tonight. A bit higher than I was hoping for, since I'm liking the narrative that the flare is easing off. I still think it is based on the decreased knee fluid. It is really hard to recognize and admit any improvement when every moment and movement are still so difficult. But I'm trying, while also trying not to get ahead of myself.</div><div><br /></div><div>Pain is so widespread. It isn't actually that every bone and joint and square inch of skin hurts. It's just so many specific hurts, hot spots. My feet, my fibulas, my knees, of course, sometimes my femurs, my hips, my sacrum, a region of my thoracic spine, my shoulders more or less at times, newly my left humerus near the elbow, my right hand especially, but in a different way my left hand/wrist, and then everything above the neck to varying degrees, especially trigeminal/jaw and my brain. I know it sounds like the whole body, but it's not. Just a lot of it. My fingers don't give me trouble if I'm gentle (although my whole right hand is still largely unusable).</div><div><br /></div><div>My thoracic spine hurts so bad when I inhale deeply that I can't sneeze anymore. The body aborts the sneeze when it feels the pain. That's a newer one.</div><div><br /></div><div>The right hand and knees are the true hot spots right now. Any slight bump or touch can feel like stabbing pain, but the degree is slightly less than at the peak. I wear a protective wrist brace and knee compression sleeves all day. <b>My knees are so sensitive. If I am at rest, and the angle of the foot or leg is 2 degrees off from where it wants to be, I get a huge stabbing pain when I go to move. Thus my waking up being so awful.</b></div><div><br /></div><div>A lot of this is new the last few months, but a lot is just amplified. But obviously, the extreme loss of mobility is new.</div><div><br /></div><div>My sleep was interrupted last night, and we had some rain around. I was less alert today. I fought to stay conscious a few times, but no full-blown brainstem aura. I had an episode around 1:00am where I was very bloated with heartburn and heart rate at 100, and I was having trouble with alertness. Felt myself slipping away a few times. But I managed to get up and cook my quinoa. The food drive remains a strong motivator for movement and activity.</div><div><br /></div><div>And it takes a lot of motivation, because getting around is almost impossible. I'm putting at least 40% of my weight on the walker, I would guess, but then I'm still using my left hand and my right forearm on the grips. I can take maybe 2 short steps without it. But not always. Sometimes none. Also, I get stuck pretty often when standing or moving around. G has to help me when I get frozen in place. Reaching the floor is near impossible, and that's one way I get stuck. <b>My knees don't get close to straight. Not when standing or at rest. Not if I press on them through the pain. They don't straighten. </b>I'd like to document or measure the angle, but it's hard to take the photo.</div><div><br /></div><div>My plaques bother me sometimes, but it's still an irritation more than anything. Except the plaque right on my nipple. I have extremely sensitive nipples (haven't been braless in a decade due to chafing). So that one is more irritable. Most of the time, they feel harmless enough, so I'm not real tempted to treat them with salicylic acid (standard treatment). I have extremely thin skin, so even my plaques feel pretty thin. Just a bit scaly.</div><div><br /></div><div>May 13 Today didn't go as hoped. My fever was definitely lower. The highest I saw was 99.6. But I think that's the end of the positives. My sleep was interrupted, again. And it is not advisable for me to try to go back to sleep without emptying my bladder, which is a huge, painful ordeal. My bladder gives me so much trouble, made worse by my extremely slow movement. I swear, I have so much output these days. My day and my meals ran quite late. And then around 8pm, I dreadfully started another brainstem aura. It went on until around 10:15. I hate it. The last hour, I was aware but paralyzed with all the horrible sensations.</div><div><br /></div><div>So after that bs, i finally was able to get dinner. I didn't do any food experiment. I didn't even get all my food in. And all the eating was so late, I don't know when I'll be able to sleep tonight. I can't sleep until I'm hungry. No digesting. But I sure am exhausted tonight. I think there's rain tomorrow. Today was gray. My body's just not happy with spring, although air quality is so rarely affecting me. That's the wonderful thing about this weather. Gotta take the bad with the good. The neuro episodes and ongoing symptoms are the bad. I was relieved to have a milder symptom day this week, but we seem to be back to the usual. HR was 98 earlier, 89 tonight. Cough was moderate, I'd say, nothing extreme.</div><div><br /></div><div><b>My left elbow area is starting to hurt more. I believe it stems from a hard jolt I took where my left elbow suddenly had to support all my weight.</b> I obviously rely a lot on any part of the body that's not my usual pain. So I rely a lot on my arms for shifting and sitting up in bed as well as standing from sitting and using my walker. Although it only hurts during particular movements that aren't totally predictable to me yet. I'm running out of usable body parts. I haven't even mentioned it to anyone because there's too many, and it's not yet interfering much with my life.</div><div><br /></div><div>May 14 Today was an interesting one, I guess. Sleep was interrupted by bladder again. I really, really miss sleeping through the night, but I'm glad I'm not peeing in bed. We got to visit with Mom for Mother's Day, and it was lovely. Then, Gustavo stayed in with me, and we put on a movie ("Air"). It was fun! But about halfway through the movie, I was getting really sensitized and startled by sound. The dreaded beginning of the aura. But I decided to fight it. It seems crazy, but an aura doesn't start while I'm eating. So I sat up and started eating my biscuits early and in slow motion. I made them last the rest of the movie, and I made it through. I still felt the attack was coming, but basically, I was able to postpone it. It still came, of course. But I figured that it's possible to postpone, but impossible to stop once it starts. Once I'm starting to lose consciousness, nothing can accelerate that horrific process. All you can do is ease it by keeping dark and quiet. But nothing brings me out of it. So today, I was able to delay it a bit. Went through the horrors when I had nothing else to do, when I was alone. I don't know if it made it any worse than it would have been. There was certainly more build-up. My heart pounded a lot today, and my digestion was "paused", so I knew it was coming. As always, I'm left with the pain phase of the migraine. Still grateful it's not as bad as it once was, although I hate when it settles in the jaw or the ear.</div><div><br /></div><div>Fever is only 99.7 and cough is not bad.</div><div>We're at the top of a massive pressure drop through the next 2 days. I expect that to feel rough. Both on my pain/mobility and my neuro state. One more day down. Let's just get another week over with. I know this is a bad mentality, but it's how it feels.</div><div><br /></div><div>May 15 Fever topped at 99.3. HR 92 during day and 82 at bedtime. The brainstem aura was milder. No total loss of consciousness, but I was in the aura state with usual symptoms around 7:00-8:30. <b>Nausea, tingling brain, tinnitus and getting startled, heart pounding, extreme heaviness, head feels like it's imploding, aches traveling throughout my body, face feels like a mask I can't move. As I've said, despite not being able to move, this is not a restful state by any means</b>. It is grueling, and time slows to a crawl.</div><div><br /></div><div>And the migraine settled over my temples, but also in my ears. It hurts to yawn. Ate my meals. Food prep. Showered. Unbelievable still how badly I move around. I noticed that after 4+ months of avoiding using my right hand for basically anything and keeping it in a brace, it is ever so slowly healing, but the meat is gone from my hand. Shriveled away as if it had been in an actual cast, but for longer. But pain is still so bad when I try to hold anything, grip anything etc, that I just have to wait it out. I guess that's my mentality for the whole damn thing. Wait it out. Wait for the whole flare to finish (not that I'll know when that is), and then hope that some things can be rebuilt. Muscle would build back pretty easily just from being able to do activities of daily living. I would be grateful if my computer getting unplugged or dropping the soap in the shower aren't disastrous. I would be grateful to be able to hold things with my right hand, wash my hair with my right hand...so many things.</div><div><br /></div><div><b>Good news of the day is a food trial off to a good start. In case I have to replace my oat biscuits, mom and I came up with a recipe for sorghum biscuits</b> with just sorghum flour and oil and salt and baking soda and water. They taste bitter but okay. I could get used to it. I ate about a fifth of a biscuit today, and so far, so good. No notable reaction. This may have been a very intuitive solution, since it's all a guessing game. I don't think I'll have to replace the oat biscuits immediately, but options are beyond important. There is probably even value in incorporating them to some extent to help reduce the risk of sensitizing to my safe, staple food. I mean, I am reacting, without a doubt, to the oat biscuits, at least with the coughing. But it's a question of manageability and risk of progression. I'm glad to have an alternative to experiment with.</div><div><br /></div><div>May 16 A big pressure changing day (drop and climb). Plus, it was 80 degrees for a while, so bedroom confinement. I am grateful there are a few more sub-70 days, but dread cannot begin to explain what I feel for the oncoming summer. Today was surprisingly a normal terrible day. Pain and mobility were the usual nightmare. HR was 100 several times that I checked. Temp was mostly 99.1 with a spike to 99.6. No loss of consciousness today, although I was stuporous at times. I had trouble keeping my eyes open during a chat group, but I managed it.</div><div><b>My knees are so cranky. The slightest wrong angle causes such intense pain. Going from standing to sitting causes more intense pain. Standing up and walking after sitting is hell.</b> Flank pain and thoracic pain and jaw pain and feet pain and elbow pain and the right hand. All the horrors of daily life. <b>I'm tired and scared, but luckily too tired and too involved in the present to think much into the future at all. That's why I journal about one day at a time. All I can handle is thinking about one day at a time. The challenges of one day are already more than I can handle. I am maxed out.</b></div><div><br /></div><div>I was wondering why the sorghum biscuits were so bitter, and sadly learned that sorghum is high in tannins. Being a major migraine trigger due to causing a spike in serotonin, I'm pretty sure it shouldn't become a staple food for me. Especially because my recipe is 100% sorghum flour, when most gluten free recipes are at most 1/4 sorghum flour. I'm not sure if there's something else I can think of to try.</div><div><br /></div><div>May 17 Survived another day. Sleep was interrupted by intense right flank pain that was relieved when I peed. Certainly seems like my kidney is pissed.</div><div><br /></div><div>I'm still frustrated by the thoracic spine pain. I did have evidence of arthritis in that area in a scan at least 17 years ago. But whatever I have going on now is so much worse. I can't take a deep breath ever.</div><div>HR was 92 earlier, 85 tonight. Fever just 99.6 tonight. Cough was mild today. I had a mild brainstem aura from 10:00-10:30 without full loss of consciousness...I think. It was close. Hard to tell for sure. But it was brief.</div><div><br /></div><div>Even with my hand kind of improving, I am so frustrated that I still can't zip a zipper or tie up my hair or any two-handed activity or anything my left hand can't do or reach. My left hand is still doing everything. That's a lot of pressure on my left hand/arm.</div><div><br /></div><div>My mobility is the same: miserable. I still can't transport my laptop at all. It stays wherever someone leaves it for me. So helpless. It's pathetic. When confined to the bedroom, I am not able to get my tray table and laptop onto the bed. I don't know how, but I hope it can improve. Hopefully with my right hand healing. It's been over 4 months now since the first hand "injury," the moment in which I yanked it wrong, and it devolved after that. Anyway, since then, I've not been able to even grip anything with my right hand. Imagine if you had a cast on your hand for 4 months. The muscle is all worn away. Atrophied. Of course. <b>I can't do anything that takes muscle. I've just started being able to hold my phone with my right hand for about one second. Not more, and never the iPad mini. I can't even double press the home button on my iPad. If there is healing, it is shockingly slower than you could imagine. This is not just weakness, but still intense shocks of pain.</b></div><div><br /></div><div>May 19 I slept shorter than I'd like. Maybe 6.5 hours. A pleasantly cool day. More living room freedom. I got a visit from Mom and Lexie. Then I had some struggles with consciousness for a bit around 4:30. Made it to class at 6. More brainstem aura around 9-10:30. I did lose consciousness for a bit. I struggled with neuro symptoms a lot. Heart rate was 100 all day and still is. Certainly struggling through. I believe I will lose consciousness once more based on symptoms. It's only 1:00am, after all. Plenty of time to pass out. And my ears are ringing loudly, and my heart pounding hard, so I know it's coming back.</div><div><br /></div><div>My mobility was worse today. Disappointing again for my "flare is wearing off" story arc I like to cling to. My knees had more fluid than the last few days when I put on my knee braces. And then, I repeatedly got stuck trying to get up from the couch with my rails. If I could use both hands, it would be different. I really do get stuck in some really awkward positions where I don't know how to move without causing screaming pain or falling down (causing screaming pain...and more being stuck). And sometimes, I feel more actually physically stuck. Today was both, I think. I also just had more movements that caused screaming pain today than I have been having.</div><div>Jaw pain back tonight. There's some rain around, so maybe that's why.</div><div><br /></div><div>My left elbow pain is getting worse. Only hurts in specific positions, usually when the arm is bent past 90 degrees. And it's only been really painful a few times. Before that, just twinges. But honestly, this cannot happen. It's not like my knee pain. No pressure in the joint. More like my hand pain, but I can only hope less limiting. I truly rely on my left arm for so much, and I cannot do basically anything without it. If only my right hand would heal faster, maybe I could take the pressure off the left arm. God, this is impossible. Make it stop.</div><div>Temp is only 99.1 here at 1:00. 99.4 at 2:00. 99.7 at 4:00.</div><div>Starting Sunday, it's basically summer weather. I will deeply miss my recliner and my freedom and my time in the living room with G. Life will get so much sadder and harder. And oh the pain. My body cannot handle sitting in there all day. Plus, the heat and lack of fresh air. Oh, summer. How I hate you. The will to go on gets even weaker.</div><div><br /></div><div>May 20 A bad day. My sleep was broken up for no good reason. When I did get up, I was feeling rough. So achy and nauseated and fuzzy and irritable. I was not pleasant with my kind visitors (Mom and Andy). Starting around 7:00, I had the full brainstem aura experience with loss of consciousness and then prolonged paralysis once I gained awareness. It honestly was my whole day.</div><div>I never really got company tonight, but I would have been bad company anyway. I was so irritable. I really just wanted to exist in a floating sensory deprivation tank and not have to move or sense anything. Movement was hard. I was clumsy today, so I had a few rough moments. <b>The worst was when I was brushing my teeth. Hard to explain, but I leaned on my left forearm to lift myself to spit, with some weight on my braced right paw (still not a hand), and I slipped and jolted a lot of things, mostly my left elbow (which now hurts worse)</b> and my delicately healing right hand. I also bumped my chin on the counter when I slipped, giving my brain a real jolt. I screamed.</div><div><br /></div><div>I just had a lot of trouble containing my screams of pain today. I do push through and contain myself a lot of the time. Maybe the sensory overload just reduced my tolerance to nothing.</div><div>Heart rate has been 90-95 today. Temp got up to 100 around 2. My weight is down to 89. My head hurts worse after the aura, like always. The stuporous state has been sustaining through the night to varying degrees. No clarity today. Pain in the jaw and ear too.</div><div>I'm trying to eat more hemp seeds and still experimenting with sorghum biscuits.</div><div><br /></div><div><b>Trials I would like to get around to soon:</b></div><div><b>Histamine-reducing probiotic with no fillers I've been wanting to try</b></div><div><b>DGL for heartburn. I'd have to drink the pure licorice powder (ick)</b></div><div><b>PEA for inflammation</b></div><div><b>It would be really great to know my reaction to all of these things, if only I didn't have to live through the trials.</b></div><div><b><br /></b></div><div>I'd love to add more foods, but I have no way of actually taking in more than I already do.</div><div>I've been trying an odd-looking exercise I invented to try to re-strengthen my stabilizing spinal muscles to reduce back pain. I just have to get myself to do it, because like everything, it hurts my knees. I'm so ready to be done. And I think all of my loved ones could use a break from me. I guess they will get a break to some extent when my bedroom confinement begins. How can they keep hearing me scream in pain when they care so much? I hate this. Honestly, make it stop.</div><div><br /></div><div>If I could speak to my younger self, it would be the opposite of that, "It gets better," advice. It would be to stop imagining some elusive and impossible change that will improve your life, make it easier. Nothing like that exists. All of your false hopes will always be continually dashed. Don't put your hope in the next thing being the thing that makes it better. Maybe I wouldn't tell the painful truth that whatever hell you're living in, there are always worse ones ahead. This paragraph inspired by someone posting this quote "Just remember, 5 years ago, you dreamed about being where you are now." Nothing against anyone who shares this or likes it. But what a freaking assumption! Why on earth do we assume that things go as we hope they will, or that if they didn't go as we'd hoped, ultimately, something better happened?</div><div><br /></div><div>And while I'm ranting, <b>why do some peop</b><b>le love to give unsolicited advice to someone with permanent, debilitating, progressive illnesses? I think it's about the illusion of control</b>. People love to believe, and it feels great to believe when you are well, that you get to keep being healthy if you make the right choices. So then they can assume that if they got sick, they could do something to make it better. So if you're still sick, you must be doing something wrong or not doing enough. The people living through hell are doing everything in their power to not live in such a hell. It's just that that power can wear away to just about nothing. Believe it or not, there is not help for everyone.</div><div><br /></div><div>May 22 Good news, bad news. Mostly no news because the days are mostly pretty similar. <b>The good news is that my weird little exercise seems to be helping my spinal pain a bit.</b> After months, my body has actually allowed itself to sneeze twice, because the pain on deep inhalation is less intense. I'm a genius. Now I've just got to keep doing this consistently to hopefully keep the pain a bit lower. I experienced this same miracle in physical therapy oh so many years ago for this same pain. Essentially, one exercise was the key to minimizing this thoracic pain. We'll see if it maintains.</div><div><br /></div><div>The bad news is about that other back pain. <b>That flank pain. I can very specifically feel where my kidneys are. I often wake up from the pain, and it decreases after I pee. My urination is also frequent and urgent these days. Plus my newly swollen ankles. Other signs of kidney problems I </b></div><div><b>am less likely to be able to distinguish: weakness, tiring easily, morning nausea.</b> I am getting bouts of intense exhaustion that are NOT associated with my brainstem aura symptoms. Just plain old exhaustion. I don't know if my kidneys are acting up from infection, mast cell madness, or some undiagnosed autoimmune bs. <b>But it's honestly just one more thing going wrong in my very broken body. Reiterating that lost hope of ever being able to solve the problem of my body. Sure: treat your mast cells, treat infection, suppress your whacked out immune system. Yeah right. I can't even get in the car. I can't be near people. I can barely endure moving a few steps. I don't do new </b></div><div><b>treatments because they are experimental horror shows in my body that I have lived through way more times than I can count.</b></div><div><br /></div><div><br /></div><div>I don't even know how to begin to explain to someone anymore what all is wrong with me and why I won't see doctors anymore. My life as a "complex" patient began around 14 with my breathing difficulties that have since been recognized as anaphylaxis. <b>I stayed in active disease treatment, seeking new diagnoses and explanations and medicines and surgeries for over two decades. Literally my college years, my 20s, and the first half of my 30s. I spent those years under the care of more specialists than I could possibly ever remember. I have more traumatic experiences than I can recount as well. I have been destroyed. I will only let my body destroy itself from here on out. No external forces welcome.</b> Actually, my full rejection of the medical industry began around 2018 or 2019, although in large part in 2016- my last hospitalization. <b>My body said, "No more." I agreed.</b> I understand this means I may not have much of a future. I'll keep plugging along until I can't. And I need to arrange contingency plans for that time.</div><div><br /></div><div>Anyway, today's stats are similar: HR around 100 all day. I am so tired of that lack of restfulness. Temp 99.9 (although my face feels hotter--maybe the warmer temps make it feel worse, even though we're not that warm tonight)</div><div>My knee pain from simple weight-bearing is continually worse, to an impossible degree. The constant progression is untenable and barely livable. There is no end to this torture. To a much lesser extent, my hips are also getting worse. I don't believe the right one can straighten fully anymore. It feels like it's being obstructed by one of those same joint bubbles, but it doesn't pop.</div><div><br /></div><div>I was fortunate today that I was able to be in the living room with ventilation most of the day.</div><div>Oh! I'm also proud that I managed an overnight with my husband away. He helped me prep a lot, like he helps with everything, but I did it. I wasn't sure I'd be able to manage that, and it was hard! But every day is hard. I sure prefer company, but it's good to know it's possible.</div><div>I'm dreading the apartment inspector coming and invading my space tomorrow, accompanied by the fear that he could plausibly force us to get some kind of work done that I couldn't tolerate. Fortunately, there's not usually an issue.</div><div><br /></div><div>A fun thing in my life has been discovering Libby and audiobooks through the library. I've listened to three in the last few weeks. Despite my extensive podcast resources, it's nice to have an addition, especially since my eyes don't love to read much these days. (So much for all that eye doctor time.) And somehow, my inattentive brain doesn't have much trouble following. I tend to turn down the speed a bit, and yes, I jump back frequently, but I follow the stories when I listen at the right time of day.</div><div><br /></div><div>May 23 Somehow got another day of freedom. Decent fresh air outside for much of the day, allowing me to be in the living room. Tomorrow is >80, so unlikely to repeat this luck, since the scent will be stronger to overcome. Then, starting on Sunday, all 80+ degree days are forecasted. The dreaded summer.</div><div><br /></div><div>We missed the apartment inspector. It was really dumb. We were sitting there totally prepared with the place airing out to blow away any fumes he brought in. Now it's rescheduled for another day.</div><div>The day was pretty normal/terrible, although I'll begrudgingly admit it was better than average. I first got aura symptoms at 8:00-ish, but only early stage. The full loss of consciousness didn't happen until 1-2am. It was totally horrible, as always, and followed by prolonged paralysis. Yet again, I could postpone it (with difficulty) by staying a bit active and mostly by eating, but after eating, it will still hit me. Today, this meant that my shower was later than I'd planned, and my hair will be too wet to sleep on for a while. (It's 4 now.)</div><div><br /></div><div>My heart rate has been 90-100 today. Nighttime temp only 99.4. It could still go up, since it goes down when I'm passed out. (Yep, 99.9 at 4:45.) I've barely coughed today, so that's interesting.</div><div><br /></div><div>Walking is terrible. Showering feels insanely dangerous and like a weekly mountain climb. It also reveals what's changed since the last shower. I still had to do most things with my left hand. But my left elbow is getting worse, most noticeable during attempted shampooing.</div><div><br /></div><div>I also caught a glimpse of just how atrophied my right hand is. It's disheartening and frustrating that it's been soooo long since I've been able to use my right hand that it's basically dying. I know it sounds crazy, but sometimes I wonder if it's broken. Weak bones and a stress fracture that can't heal. It wouldn't be my first. Still can't hold the iPad mini with my right hand or double press the home button. I can single press the home button with my right middle finger. I can't tie my hair back at all, which is annoying with my itchy neck. I reminisce about playing piano and my right hand being so free and yet finely controlled. No space for reminiscing around here. That leads nowhere good.</div><div><br /></div><div>My plaques and rough, itchy patches are certainly annoying. There's been a very slow spread around my body, although the main plaques are on my neck right now. But some rough patches are itchier than my neck at times.</div><div><b>I'm going to try eating less salt to give my kidneys a break. Sucks because I'm hypotensive, and it's my only seasoning. But as always, my body hates itself.</b></div><div>Can I be done now? Have I done my time yet? Can we just call it already? This hurts. This hurts more than I could ever have imagined and more than I can describe. <b>If I mention a pain, it's because it's horrific. I'm not leaning on a walker for a little support. I'm trying to reduce the weight on my knees by at least half so I don't just scream constantly. I'm not unable to use my right hand because it aches a little. The tiniest wrong move causes screaming pain. And most moves are wrong.</b> I've had a million lesser pains before. I still have them, and don't even mention them. I don't believe morphine would make a dent (although I'd be willing to try if my mast cells weren't insane). This needs to be winding up soon. The absolute desperate avoidance of these many pains is enough to make me shrivel away. And it just keeps going. I need a stop. I need an out.</div><div><br /></div><div>May 23 Today, I'm just reporting that the migraine aura has been threatening for hours. Starting around 11:30. It's 3:45 now. What a time this would be to pass out. My heart has been pounding hard. Intense nausea. Tinnitus. Amplified hearing. Startling at sounds. Despite feeling feverish, my temperature dropped like it does when I pass out instead of spiking like it tends to at this hour. Feeling heavier and heavier. Heaviness in my pounding chest. What an awful time it would be to pass out. It would really mess up my bedtime, which is falling asleep in the chair around 5:15 and then transferring to bed with help around 6:00. Maybe not ideal, but it's the routine for now. Well, I've neck braced up, bracing for impact. Or maybe I'll just stay with this early stage aura straight up until bed. But I couldn't possibly sleep through this. As always, this version of losing consciousness is the opposite of rest. If it's going to happen, it would really be better to get it over with.</div><div><br /></div><div>May 24 <b>Wow, it's been hell. I did finally pass out around 4:30am, when I silenced everything. I was out until 5:15, when a sound startled me into awareness, but I stayed paralyzed until 6:00, and probably went in and out a few more times.</b> I hadn't taken my sleep meds or done my final bedtime preparations, because I was in that hell for so long.</div><div><br /></div><div>So then, I made it to bed at 6:30 and couldn't sleep until 7:00. Then, I had so much trouble with knee and hip pain in bed. Repeated and prolonged awakenings. I finally was able to get out of bed around 3:30 in the afternoon. My normal is 2:00ish. So, my whole day ran late. There wasn't time to eat all my food. I feel like I've been in battle and fearful for the next time.</div><div><br /></div><div>It's 3:00 now. Will it happen again tonight? Can I do anything to change it up from last night's torture? I can stay in silence, which I mostly am. I did some cooking. Still need to clean up. My head pressure is high and tinnitus going. But the heart pounding has been less intense today.</div><div><br /></div><div>My swollen knees are pretty much at maximum swell today. Getting around is so extremely difficult.</div><div><b>But, I tried drastically reducing the salt in my diet, and the change to my kidney function has been incredible. I'm not peeing excessively. Less frequency and less volume. Still some urgency at certain points (I think just because I move so slowly.) Less flank pain too. Almost none upon waking up, which is a huge change. </b>Years ago, I had to discontinue my salt tablets due to kidney pain. So I guess this is a progression. My food is much less appealing. I am barely interested in eating. Some foods just taste pretty bad. I'm sure I'll get used to no salt/no seasoning. But it sucks. But my kidneys seem happier. I guess they're just getting shittier, like everything else. It's not great for my hypotension though, which loves salt.</div><div><br /></div><div>My little rash spots are spreading more around my torso; actually, some rash, some plaques I don't know how bad, since I can't see my back and I can't reach well with my little paw, but I feel itch and rough patches.</div><div>Now it's 4:00, and sounds are seeming amplified. I cannot do a redo of last night.</div><div><br /></div><div>May 25 <b>The apartment inspection was today. The guy, of course, smelled of cologne, despite repeated requests that he come fragrance free. I was 0% surprised. It was 5 minutes, but it still ruined my day. I had to manage my way out to the patio and sit in a patio chair for 45 minutes while we aired out. My hips and sacrum were in so much pain, I could only step inches at a time back inside after sitting so uncomfortably. My recliner is extremely tailored to my body. Any other seating is torture. Getting outside also involves a small step, which is nearly impossible in both directions.</b> My right hip especially has been killing me all day. Then, of course, during airing out, tobacco smoke got blown in. Thankfully, it was mostly in the bedroom, and the air purifier in there (EL Foust) was easily up for the job. I've been in pain all day. I suppose it's hard to say it's worse, except for my right hip.</div><div><br /></div><div>One thing over with.</div><div>CVS is screwing with my prescription dosage and frequency again. I can't believe how many times we have to go through this. It feels endless. And once they screw it up, I'm shorted until they say I'm due for a refill, because laws prevent early refill. But it's only "early" in the sense that they messed up again. Thankfully, this is a medicine that I can and do ration, so I don't come close to running out. But I still have to stay on top of them and often arrange with my doctor to correct the same exact mistake again. I've never seen such incompetence in a pharmacy in my life, and I have some experience.</div><div><br /></div><div>My bladder hasn't been as impressive today. I peed plenty and with decent volume. But! Flank pain is still mostly gone, so I will continue avoiding salt for now.</div><div><br /></div><div>I'm still struggling with neuro symptoms at various points in the day, and still coping with early aura frequently, just waiting for the next loss of consciousness. I was dropping away a bit today between 10:00 and 10:30, but not enough to convince me that it won't happen again. Only if I have a very well-defined, decisive loss of consciousness with a definite ending do I feel like I'm off the hook for the rest of that day. I'm still really hoping it doesn't happen right before bed again. That really messed me up.</div><div>Heart has been pounding a lot of the time, but a bit slower today. Around 85. Temperature is only 99.1, so that's pretty great.</div><div><br /></div><div>I'm starting to hate being in bed. It's just become so much less restful. I don't sleep through. Usually several painful wake-ups. Painful bathroom trips. And then painfully attempting to find a way to rest my legs that doesn't cause more pain. This is becoming less and less possible. 4 full pillows of various weights and densities all just for under my legs. Plus two different head pillows and one between the leg pillow. Plus some towels to try to support my knee while I lie on my side, although I don't sleep on my side. Then whenever I wake up, there's the instant pain and the sweat and the pounding heart. <b>And then trying to readjust myself in bed is so difficult and painful. It's practically like post-surgical pain, when you wake up and the drugs have worn off, so you feel all the damage at full-force. Plus, I feel like I weigh a ton. If I prop up on my elbows, my left elbow hurts. Right hand is still out of commission.</b> I think I am sweating less with the lowered fever, but we'll see if it lasts.</div><div>I love actually sleeping though. Being asleep is my favorite.</div><div><br /></div><div>The temperature changes have been hard, I think driving the neuro episodes. But getting warmer will be worse, and I know it's coming. God summer is so long. And time is so slow.</div><div><br /></div><div>May 26 <b>Man, I'm exhausted. G has not been available to help me today or this evening, and it's been so hard, proving just how much all those little things add up.</b></div><div>My fever was back to 100 during the day, higher than it's been during the day in quite a while. Although it's only 99.2 tonight. I feel like my body has lost its circadian rhythm from all of these auras robbing me of time. It's like constant jet lag.</div><div>My left elbow has been getting progressively more painful, making every little thing a little harder. I can no longer hold a phone to my face due to my right hand and my left elbow.</div><div><br /></div><div>The big issue though is my jaw. I've complained of jaw problems for a long time. Many years ago, I stopped eating crunchy food for this reason. But there's a tricky differentiation between trigeminal nerve pain and TMJ pain and migraines that show up in your back teeth and ear and jaw. Generally, I just ignore it, because migraine pain tends to move around. But yesterday and today, I have a creaking sound in my right jaw joint with every bite. This feels like a bad sign. Both the bubbles in my knees and the creaking in the jaw are considered crepitus, which if painful, is a sign of the inflammatory arthritis.</div><div><br /></div><div>I've been having bite troubles for a while. I have retainers that are 12 years old that I still wear. They help keep my jaw from going crazy, but I haven't achieved molar contact in a while, and that puts stress on the joints. But they were still my best tool. And now, today, I removed my retainer, and it cracked. I'm afraid this will be my next big hurdle. Because of course, it's doubtful that the office that made it could remake it without me coming into the office for multiple appointments, and taking off a mask, which I would never do, and taking a mold of my mouth, which I cannot imagine going well. It really hurts to open my jaw at all. <b>I mean, there are good reasons saying that I need new retainers to better align my teeth, make the molars meet to form a proper bite surface, and protect the jaw from further damage. But that is rather impossible, now isn't it? Just like every other inaccessible treatment. </b>Ugh. I hate this. I just wanted to keep wearing the same retainers forever. But that is not an option. I don't know when I'll deal with all of this or how. I guess it depends on how urgent the jaw pain/dysfunction becomes. I've been putting up with this bs forever without any help. Only the creaking jaw is new, although I don't think it's the first time. The only workaround I know for this is pureeing everything. Even my biscuits take chewing. Ugh, why. Why so many problems I can't solve? Because this broken body needs medical care in so many ways, which is not an option. Let's just stop the misery already, please.</div><div><br /></div><div>Anyway, my heart rate is 95. I had early aura symptoms several times today, but only a few tiny lapses in consciousness. So far. It can always happen any time, of course. I hope this day can end peacefully, besides the inevitable pain of trying to walk after having rested for a while when I prepare for bed. It's still one of the worst times.</div><div><br /></div><div>May 28 My jaw only creaked a little today. Hopefully, it will stay that way. I need my jaw joint.</div><div>For me, this was a relatively good day. Relative to my new normal.</div><div><br /></div><div>I've been dealing with abdominal swelling, which has not been my norm for a while. Also, my bladder's acting up, causing a sense of urgency when there isn't much volume to empty. Really frustrating, but I'm still reassured that I don't seem to be overproducing urine right now. Still on the low salt diet. My kidney areas feel pretty good. But my bladder is really irritated and getting painful tonight.</div><div><br /></div><div>My left elbow continues to be joining in the fun of activity-limiting joint pain. I think maybe it started when I slipped and landed with my weight mostly on my left elbow while brushing my teeth. It was a shocking pain. That would be encouraging, since it suggests the possibility of healing. It seems possible since it's not inside the joint itself. That would make it very similar to my right hand pain. That pain is in fact improving, but still so slowly. I will not be forcing it anytime soon. The pain comes back so easily. But it seems to be decreasing still. I just tried flushing the toilet with the right hand...any finger or all...still a no-go due to such sharp pain. So not close to rebuilding yet, but going in the right direction. I can accidently bump my hand without screaming. I can briefly (1-2 seconds) hold my cell phone. Not much more.</div><div><br /></div><div>Unlike my knees, which are holding steady, I think. I feel like they haven't been changing much. Same level of limitation. <b>I hate those bubbles as much as ever. I know that it is very normal to have bubbles in your joints, and they usually pop painlessly. But these are not those bubbles. These are evil bubbles related to joint swelling and degeneration, from what I understand, and they are agony.</b></div><div><b><br /></b></div><div>My shoulders are still randomly painful. I used to think of this as subluxation from EDS, but now I think it could be bubbles popping in the joint. Could be both.</div><div><br /></div><div>I'm still doing my little exercise for back stability, and still benefitting from that with decreased thoracic pain, although my body still often aborts a sneeze when I feel the sharp pain on inhalation.</div><div>My neuro state is pathetically better than average. I slept well (nice and sweaty--I only sweat a lot with deep sleep). I had several episodes of "early aura" signs, but I don't think I crossed over into loss of consciousness (yet). It's 2:30, and I'm feeling stuporous with a pounding heart and tinnitus, so it's certainly possible.</div><div><br /></div><div>Hoping for another sweaty night. Although really, that all is probably about to change with the shift to warm weather again. Everything will change. I still need to figure out how to eat a meal in the bedroom. I don't even lift the computer or tray onto the bed myself anymore, much less get myself in there with a plate of food balanced on top. My mattress is very squishy, as I need it to be, but it is not really made for sitting up and eating.</div><div><br /></div><div>I have that weird migraine pain in the ear/throat today, which feels worst when I yawn.</div><div>Heart rate has been 95. So tiring. Temp lower again today. I think 99.4. I'm weighing in at 89. God, I need more muscle. This tiny body is so hard to move.</div><div>I hope my bladder calms down soon. Nerves must be involved, because I literally feel buzzing.</div><div><br /></div><div>May 28 Another sweaty night last night. I slept through and deeply, despite the usual pain of finding a tolerable position. Today was more brainstem aura. My heart was pounding at 95 around 6:45. I was enjoying a movie with G, and <b>frustratingly developed all symptoms and lost consciousness for at least the middle half hour of the movie. And then when I gained awareness, I stayed paralyzed for until around 8:40. </b>If I had been in silence, maybe I would have stayed out instead of regaining awareness, and maybe that would have felt more definitive, but who knows? By definitive, I mean that the symptoms came creeping back around 12:30. I hadn't done my time for the day. I had to push through to get my cooking done. The quinoa still has some time left in the microwave. Then, I guess I'd be free to pass out again if needed. But I can't really control when it starts up, so it could easily be at 4:30 again, ruining my whole tomorrow too. Hopefully not.</div><div><br /></div><div>The weather will be warm this week. I don't know how bad it will get for me. Hopefully, I'll have some freedom tomorrow so I can make the most of having G at home. But would staying conscious too be asking too much?</div><div><br /></div><div>My abdomen is swelling a lot again today. I hope this is a short phase.</div><div>The migraine has been similar: over my temples and in my ear/jaw. I have felt a lot of exhaustion and intense pain today, but was so very happy for the company.</div><div><br /></div><div><b>I have a theory about my right hand and left elbow. Both were moments of injury, however small they seemed. I am supposing that my bone density is very low again, and perhaps these are hairline/stress fractures.</b> I got a very unusual one at age 15 in the center of my heel bone. They didn't see it at first, but when they did, they said they wouldn't have even looked there, because it was such an unusual injury. My geneticist later took quite an interest in this story. Telling, I guess. If only they had done a bone density test then, perhaps I would have understood more about my condition sooner and been better understood. But probably not. Most doctors just don't give a ****. And they're so often clueless. Almost never helpful. Can you sense the love? Anyway, my elbow especially feels like the same scenario. It's hard to describe the injury, but suffice it to say that my elbows and forearms have been doing a lot, including catching me when I so often slip and nearly fall. So was the case with my left elbow, when it took all my weight in a sudden jolt. Since then, the pain has been worsening, reminiscent of my last stress fracture. The only treatment? Totally stop putting stress on the bone and don't do things that hurt. And based on my hand, healing is going sloooooowly in my body these days. Especially because I'm not casted and able to totally avoid using literally any part of my body. The main things that trigger the pain are: putting weight on my left elbow, bending to put an ear plug in my left ear, and bending to try to put on my collar with a bent arm. Bent beyond 90 is when it hurts most. So at this time my barely recovering right hand is starting to take over these tasks. Wrong move for healing, but I literally have no choice. Also, I can't tie my hair back, but even reaching to try to pull my hair out from the top of my shirt is too painful for my left arm. It's just too bent. I hate my hair in there since that's where I'm covered in irritated plaques. Also, reaching back to scratch my plaque-y shoulder blade is impossible. I can't bend the arm that far.</div><div><br /></div><div>Thankfully, I can still use my left arm for hoisting purposes if done carefully. And I can still use my left hand on the walker handle taking most of the work and weight, along with my right forearm taking some.</div><div>This body is so clearly disintegrating, and yet I have to keep getting through life in it.</div><div><br /></div><div>May 30 I stayed conscious today, although stuporous at times. Heart pounded at many times. GI trouble causing problems with evacuation. 'Nough said.</div><div><br /></div><div><b>The last two days, my elbow pain is noticeably worse. Even putting my weight on it in bed hurts too much. It's not screaming pain yet, but it is very limiting. </b>And I really rely on my left elbow to move around in bed. I'm not moving well. Getting in and out of bed is so hard. I am not sure how to accommodate this pain. My right hand is improving, but still has so far to go to come close to taking over for my left hand. And rebuilding from that atrophy can't quite start yet, although I'm sure it will happen naturally with increased use. But the pain is still preventing rebuilding.</div><div><br /></div><div>For my shower last night, I tried out a new shampoo brush to lather my hair with weak hands. It worked amazingly well. My hair hasn't been this clean in months. But my left hand couldn't do it due to the elbow bend. Fortunately my right hand just managed it.</div><div><br /></div><div>I was coughing tonight, but not much fever today. 99.3 earlier and 98.8 tonight! Overall, my cough has been much less problematic these last couple weeks. Heart rate was 97 earlier and a constant 90 tonight.</div><div><br /></div><div>My jaw is still wonky and my vision seems to be in flux.</div><div><br /></div><div>My plaques suck. Itchy today. Especially the one on the nipple. It's not a constant, frantic, body-wide itch like when I get bit, and my histamine level shoots up. But it is an annoying, intermittent itch. And the patch on my nipple seems to be peaking right now. Yikes!</div><div><br /></div><div><b>I'm still following the very low salt diet, and my kidneys seem to be so much happier. Flank pain has decreased a lot, and my urinary output is a lot less excessive. I even get to sleep through the night sometimes! And I believe my ankle swelling has decreased as well. </b>Kind of amazing after requiring a high salt diet for decades.</div><div><br /></div><div>I didn't share the miraculous part, which is that the last week or so, even when the temperature got higher, nothing really smells. So I've been able to stay in the living room with the AC. I can't explain it, and I won't count on it, but I'm very grateful for it.</div><div><br /></div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxuG5tfkaN6XMXCK-3IbgZphk8s4wRGuBI4ab-bQDgq_55UQ3OxwVh1q_9zRiKtk27f6LSGUURzGCnN3lPCm8CsNH4yLCy5_oxdl28U21ZhyKAGNc0bHX9HuxQiqEwLknWujwuv18SI_aWSY0kbkFfcQB6Mw4Dl6UIgfRHcT-PvUUI_T65tSZfQuxJ/s4032/20230516_180528.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxuG5tfkaN6XMXCK-3IbgZphk8s4wRGuBI4ab-bQDgq_55UQ3OxwVh1q_9zRiKtk27f6LSGUURzGCnN3lPCm8CsNH4yLCy5_oxdl28U21ZhyKAGNc0bHX9HuxQiqEwLknWujwuv18SI_aWSY0kbkFfcQB6Mw4Dl6UIgfRHcT-PvUUI_T65tSZfQuxJ/s320/20230516_180528.jpg" width="240" /></a></div><div class="separator" style="clear: both; text-align: center;">Ankle swelling</div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbDOcrXkR3et9Z5baOi8ZIv5cWDabnSG_rlgVdX3XxNOdPeDwC7JDdFVv81VIS_HLIjYpSJZJ2cgezhJ3s_pPVXkf2FZgsm3gWAUUwEPDg0O-3tQvBJ-EzKZJv1DOQc_Qo0WBchuYSkz84fhU8XoQVVBDj6aGLZFCYF2rpniP06Ia1PS8Z1RokIhPG/s4032/20230523_031347.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbDOcrXkR3et9Z5baOi8ZIv5cWDabnSG_rlgVdX3XxNOdPeDwC7JDdFVv81VIS_HLIjYpSJZJ2cgezhJ3s_pPVXkf2FZgsm3gWAUUwEPDg0O-3tQvBJ-EzKZJv1DOQc_Qo0WBchuYSkz84fhU8XoQVVBDj6aGLZFCYF2rpniP06Ia1PS8Z1RokIhPG/s320/20230523_031347.jpg" width="240" /></a></div><div style="text-align: center;">Muscle atrophy</div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjt3h6bin4eJ_74bsYOVlVJWtw6opgU516dgVP1u3QJrZzzFd3gPeb2DIvYYSMsELyT4IY0i0hx6Ppsw80pFGdZRK08v7JRwBLI4Y3QWK9IdD77pZsUpbNVylHnZnXCLBNqRgShEuViOrDl_ytLohbAT5GGnmr2s7-SUvruu_FbISDdPghWfPcwwp-O/s3532/20230527_141201.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3532" data-original-width="3016" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjt3h6bin4eJ_74bsYOVlVJWtw6opgU516dgVP1u3QJrZzzFd3gPeb2DIvYYSMsELyT4IY0i0hx6Ppsw80pFGdZRK08v7JRwBLI4Y3QWK9IdD77pZsUpbNVylHnZnXCLBNqRgShEuViOrDl_ytLohbAT5GGnmr2s7-SUvruu_FbISDdPghWfPcwwp-O/s320/20230527_141201.jpg" width="273" /></a></div><div style="text-align: center;">That's as far as my legs straighten.</div><div style="text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwFb2ARTKf5-JjwwvCs7_kzbeE0g8nRYtKihUNtXPsXytzjkkpG_u_S-GnLeDUKypDBcKnvTcxWwm_4bg-SSRpPsWOAzBVrwNon5lU2f9jRx45yChyI1MXCvq2XHqlVWwssTRrcoR1RAqI6St76szax5l3g66wrU9GHkGMJj1BRjR4WsRQEyw5txA1/s3179/20230530_014137.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3179" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwFb2ARTKf5-JjwwvCs7_kzbeE0g8nRYtKihUNtXPsXytzjkkpG_u_S-GnLeDUKypDBcKnvTcxWwm_4bg-SSRpPsWOAzBVrwNon5lU2f9jRx45yChyI1MXCvq2XHqlVWwssTRrcoR1RAqI6St76szax5l3g66wrU9GHkGMJj1BRjR4WsRQEyw5txA1/s320/20230530_014137.jpg" width="304" /></a></div><div style="text-align: center;"><br /></div><div style="text-align: center;">I couldn't show the whole plaque-y area without revealing too much, but this one shows a lot of it. I have other plaques strewn across my torso as well. And the fading ones on my thighs.</div><div><br /></div>Carolyn Medranohttp://www.blogger.com/profile/02811093427920453122noreply@blogger.comtag:blogger.com,1999:blog-833972720679789479.post-30088782304345808162023-05-04T01:56:00.001-05:002023-05-04T03:27:24.247-05:00Daily Journal through May 3, 2023<p>Daily notes for the last couple weeks</p><p>April 19 Another day. Heart rate 100 mid morning. Attended class, but cough was bad. Fever 100.6 by 7:00. As always, heart rate and temp stayed elevated. Stayed conscious today during aura window, although in a stupor. Vape fumes a couple times today. Indoor temp 68-so nice. Cough and heartburn bad at night, along with persistent fever. Leg muscles aching so badly. Knees are so painful even at rest. Needing extra padding to support them in an even more bent position. Tomorrow is a warm, stormy, low-pressure day. Sense of smell must be amped up right now. Guessing the pressure drop is contributing to this very achy brain. Area above ears hurting most. Also getting startled by noises. Stuporous. Aura state at 4:00 am with some loss of consciousness. Getting less predictable. I miss visual auras! Let's go back to that. 4:45 I saw some lightning that could explain the pain spike and sensory overload.</p><p>April 20 Another hot day, and stormy. Made the apartment smelly. Bedroom confinement. Slept hot. Sweat a ton. Sooo hard to get out of bed. Every part hurt so much, it felt impossible. Bathroom needs are the only thing that gets me going. And I barely make it. I had to stay in bed most of the day. Bed stayed damp with sweat. Bedroom was hot and stuffy. 78 degrees. Fever 99.6 daytime and 100 at night. Cough was bad. So many things make me cough, rather convulsively. It comes in waves on and off throughout the day and evening now.</p><p>I got little breaks today to try to be out in the living room with a direct stream of air on my face. It's easier to eat not in bed. But of course, there ended up being smoke I blew in at one point. Amazingly, I did not struggle with consciousness today. Should be a cooler night and day tomorrow. I wonder if things will ease up. Joints are hurting as much as ever. Muscles ache all day. I'm so ready for this flare to be over. At least the fever was a little lower. Earlier class schedule today should improve the spacing and timing of my meals, if I can manage it.</p><p>Late night out in living room. Even though it's cooler, some remnants of the day's stink remains. Have to ventilate to stay out here.</p><p>April 21 Wow, it was cooler, but today was a beast. My sleep got interrupted, so that kinda ruined everything. I fell asleep by 5, in bed! But I was awoken around 11 by the usual garbage truck for some reason. I was trapped under the weight of my heavy body pillow with a lot of pain in foot and knee and hip. I staggered to the bathroom and back to bed. But if I couldn't get back to sleep, I'd be in trouble. So I took an extra half dose of Ambien as prescribed, and finally got back to sleep after what felt like a long time. I was still asleep when Mom came over at 3. The second wakeup was slightly easier due to not sleeping as deeply. But the day was doomed. I ate breakfast around 3:30. I rested in pain until about 7:15, when I finally got my lunch. Then, it went all downhill. I went into a brainstorm aura between 8:15-10:45. It was the usual horrifying experience. At least I got on a rigid neck brace this time. My head ends up in bad positions when this happens. At 11, I still wasn't really recovered, but forced myself to eat a snack, having missed a whole meal. I never miss meals. I always just squeeze it in. But this was too late. Then, I had to remake the bed due to saturation of the mattress topper fumes. I added a new polyethylene cover to try to contain the off-gassing better. G did most of the work. I mostly just changed some pillowcases and tried to gently hold sheets in place, but even that was too much for my hands. I had an emotional breakdown afterwards, worried that I had strained my left hand too much. My pathetic functionality and "independence" depend on that joint holding out. I've already given up on closing food storage containers all the way. Some of them just won't close without straining my hands too much.</p><p>Then, I finally desperately needed a shower. A week's worth of sweaty nights, plus I was starting to smell the memory foam on myself even outside of bed. Disgusting. I managed the shower, but my left hand is barely able to wash my hair, especially to the scalp level. My right hand can't even spread soap. But I did manage it. Fever up to 100.2 tonight. My bubble pops seem to be less painful, but maybe I've just modified so much that I never have weight on it when it pops. Cough is moderate, not nearly as severe as yesterday (maybe because I didn't talk much, maybe because I didn't air out as much, maybe because I didn't eat enough, so I have SO much less acid. It's really appealing to eat less and feel hungry but have less acid.) I have no idea when I'll get to bed given how screwed up my schedule is. This was a rough one, emotionally as much as physically. I won't be using my body pillow tonight, so maybe I'll get by a little easier. But I'm worried about my sleep schedule. It's a cool night, thankfully. But I really have to be able to plan my sleep phases. If I sleep in one go, I have to plan for that. If I can't make it through the night, clearly I have to plan better for that. But my body isn't that predictable.</p><p>April 22 I got lucky with the sleep scheduling and woke up at 1. Perfect timing for my sleep and my day. Slept from 5-1 with an interruption at 7:45 to transfer to bed from the recliner with assistance. I also had assistance getting my knee braces on in the morning.</p><p>Post breakfast HR 102, Temp 100. Food schedule back to normal. I got so much cooking done independently between "lunch" and "dinner." Around 10, my body was starting with early aura symptoms. I was able to fend them off long enough to eat at 10:30ish. Kept the vibe really low. Yawning spell around 12. Still managed to fend off full aura. It keeps starting, but not going full blast.</p><p>Hands are holding out. I feel like hand pain could be down a half a notch today. Still can't squeeze an eye dropper tube, press the volume button on the phone, hold my iPad with my right hand, or plug my phone into the charger with my right hand involved at all. Just imagine how much that interferes with every task in life to be so drastically limited. Zippers are a two-hand job that's not in the cards.</p><p>April 23 Another day. Mostly more of the same. Sleep was okay. Day started a bit late around 2:30. But I managed to get all my meals in. Heart rate has been over 100 various times during the day. Fever 99.7-100.2. Only aura time was between 5 and 6. Happily, no problems after that. A night spent with G. We just sat on the couch and watched TV, but I was conscious and not crying. Small wins. Very small.</p><p>I awoke with pretty intense flank pain today, unrelated to coughing. It seemed to relieve after I peed, so that seems a bit suspicious for kidney involvement. Watcha gonna do? Temp spiked to 100.9 at night. Burning face with chills. So glad the room is so cool (71) and no intrusive scents. But the fever feels really bad. So achy and nauseated. This is the second time my fever has reached this spike, showing that it is not yet letting up. Head and jaw pain spiking. Cough moderate.</p><p>April 24 Another day. Sadly, my schedule ran late again. I need to finish my second meal before 6pm to be able to continue in my class. I'm a ways off from that most days, although there's a fair amount of variation. On my first wake up to move to bed, I couldn't make it to the toilet in time given my nighttime baking soda water and extremely slow movement. I think today was my worst mobility day. I barely walked a step without the walker. A few bumps on hand and knees showed the amplified pain perception that is tormenting me. Tonight, my left hand feels like it won't hold out much longer. Daytime heart rates around 100 when checked (I check when it feels like it's pounding.). Fever 99.7-100.5 over the day, hot at night. Flank pain coming and going. Cough comes in waves. More of the same, I guess. I'm ready to get off this ride. My new walker came, but it's not assembled yet. But no brainstem aura today. And another cool day with tolerable air.</p><p>4:30 High fever when a storm came through and brought amplified scents/phantom scent? I swear, knee movement seems more painful every day. Bubbles are impossible, but weight bearing even at the "correct" angle is nearly unbearable, requiring the walker to reduce the weight. Knee pain at rest is notably worse, especially in bed. I cannot figure out this sleeping position thing. Sleeping on my side with the body pillow, my joints are a bit held in place, but the weight crushes me and I can get turned strangely and stuck. Otherwise, I sleep on my back with three pillows under my legs, but it doesn't seem to be enough. Looking into larger bolster pillows to use in recliner and in bed. My knees feel like they require even more of an angle at rest. And of course, my knees swell up in bed, because that's when the compression braces are off. I think it's important I keep sleeping on my back to try to avoid the hunching spine tendency.</p><p>April 25 Not much new. Still cool. No scent intrusion. I do have a new plaque on my abdomen. No brainstem aura again today. Anytime I got sound sensitive, I immediately reduced sensory input. Perhaps being more alert also made me more irritable and emotional. I was often frustrated or despairing. The sounds of pain that come out of me when I sit down or have to bend my knees after standing are like those usually only heard in childbirth. I cannot really suppress those sounds, although I do try when I have company or G is asleep. I am emotionally destroyed by the absolute devastation wreaking through my body and the amount of things I can't do or need help with. I couldn't get out a roll of toilet paper. I couldn't retrieve the food storage lids from the low cabinet. I couldn't close food container lids fully. I just give up. If they don't close, what can I do?</p><p>My legs get locked and won't bend after standing, but they also won't straighten anymore. Even at their best, I cannot straighten them. I've lost at least a few inches in height from the bent knees and resultant hunched back.</p><p>I've dealt with the usual pounding heart, stupors, exhaustion, fever, cough, flank pain, reflux. And I recognize that it was a good day. It's just heartbreaking that such an excruciating and sorrowful and frustrating day could be one of the good ones.</p><p>Fever was around 99.5-99.6 during the day, but came up in the early am hours to 100.1. Lower than it has been.</p><p>April 26 Same day in many ways. Huge, hot, bubbly knees that won't bend or straighten. Walking is so painful and stiff every step and almost impossible after rest. I tried bending my knees between steps, and new bubbles form with every step, increasing pain after walking. My legs basically get locked in one position, and I just have to try to maneuver with that. It makes my balance really bad too.</p><p>No brainstem auras again. We've had more cool weather and no scents. So nice to have a small reprieve from that horror. No aura since the 23rd and no bad aura since the 21st. That means more alertness. I still am at a stupor level a lot of the time, but it's more manageable and functional.</p><p>Still sweating through all my sheets. But fever has been lower today, and heart rate less elevated. Elevated HR was 94, and temperature during the day was 99.1 and at night 99.7. Same old every day endless nighttime reflux. The jaw/facial pain in the right cheek has never gone away. Yet another hot spot that can't be touched, along with the right hand, that overreacts to the tiniest bump or strain. I would be excited to be able to hold a glass with my right hand again, or something of about that weight. It just makes life so hard. There is a faint bruise visible over the right hand painful spot. Coughing less today. I don't get my hopes up, but I am grateful for this current let-up in some symptoms.</p><p>April 28 The very slight improvements are still evident. Elevated HR was 92. Fever was 99 during the day but up to 100.4 at night. Coughing was mostly gone during the day. Still some coughing spells at night. I showered, and while it still felt impossible, I was able to use my right hand very slightly and carefully to spread the soap around.</p><p>No brainstem auras again. No intrusive scents. Such a nice break. All movement feels about 2% less painful. Cooking slightly easier. Knees seem to have slightly less intense bubble popping and slightly more ability to bend.</p><p>But a new symptom emerged, which is swollen ankles. It's not a pitting edema, but it's also not yet painful like my knees. But very clearly swollen. My ankle bones are mostly smoothed over. Who knows what that's about? Could be circulation related or just more joint swelling. I've never had it before. Even when I sprained an ankle or broke my foot, it never swelled, making this swelling thing feel like a baffling development.</p><p>Oh well. I'm taking and acknowledging any slight improvement I can get. We'll see what happens next. We've got some low pressure challenges coming up, but at least the temperature is not going back to summer weather just yet. The temps have certainly decreased the stress on my body and made sleep easier, although still so painful. Also, I have avoided the bodily stress of going out for a few weeks now.</p><p>Sleep is still a sweaty and painful affair. I usually fall asleep in my recliner and wait for Gustavo to help me hobble to bed when he gets up. The compression knee braces are so difficult and painful to get on and off, but absolutely indispensable. My skin also hates them, getting these rough itchy patches I've gotten accustomed to. But I can't really walk without them, so I will keep struggling to get them on. I will not have help to bed tonight, so I've got to stay on top of my schedule and get myself in bed before I'm sleepy. But there are so many nighttime challenges that keep me from going to bed any earlier. So many stupid things my body demands before sleep. Drinking so much baking soda water for all the hours and hours of heartburn. Applying multiple gels and ointments in and around my eyes. Peeing out all of that water I had to drink. And honestly just surviving the surge of fever, cough, and malaise that kicks in from 2-5, preventing any sleep in that time. My body can't wind down during that assault. And my temperature is going up instead of down like it should with a healthy circadian rhythm. When it finally starts going down, at last, I have a chance to sleep.</p><p>April 29 HR 96. Fever 99.4. Starting to have pain in both hips. So, so tired of this. Excruciating wakeup. Flank pain and jaw pain persist, along with that thoracic spot. Pressure dropping today. Hips are aching like hell now. I can't recline my recliner, so I can't take the weight off my hips. I'm so tired. 7:00 HR 98 Temp 100. In a stupor.</p><p>I don't know if knees are really any better. Just different. Huge pressure when bending after standing, but less actual bubble popping. The bubbles are still felt. They just disperse differently. Same excruciating wakeup. Thoracic pain that's been there for months. Flank pain. And the freaking knees. I can't remember what it's like to not have knee pain, since it started in my adolescence (thanks, EDS), but this is like nothing I've experienced.</p><p>That aura window came back today. Brainstem aura with prolonged loss of consciousness from 7:00-8:30. Hips were killing me. Also, even though I was wearing a collar, I woke up with a lot of cervical pain. I need to wear the rigid collar to pass out.</p><p>Fever to 100.2 late night. Episodes of coughing again. The thing that is oh so gradually and delicately improving is my right hand. It's so subtle. But not such an extreme hot spot. Still not willing to push the grip strength, because the only thing that seems to help it calm down is avoiding any activity that can cause a pain spike or loss of grip. A single wrong move and the healing is set back. God, it's so slow.</p><p>I'm so tired. And now another decision day has come. I put a firm pause on visiting houses after the last two visits caused major progressions. But tomorrow, there is a possibility I will go on a car ride to a potential house visit. I don't think I should do this to myself. But avoiding anything that will make me feel worse will always feel like the only option instinctually. I believe it's too soon. The housing market is too hot. The prices are apparently inflated with high interest, but still a hot market. There is no way we would be entering a house without residual scent from many other daytime visitors due to high foot traffic. And I swore I would wait until this flare calmed down. All of these newer symptoms from this flare. That means heart not pounding/racing all day. No more fever. Improved breathing. I guess I can't hope for less pain or better mobility, but I would wish for that too. At least less overt signs that my immune system is in crisis. At least no new symptoms developing (like the swollen ankles and aching hips). These decisions to press and overextend my body do not only have temporary consequences. Yet again, my current interests and my future interests are not aligned. But without caring for myself in the present, there is no possible future.</p><p>April 30 HR 100. Pain was very high today with even lower pressure. Pain in feet is suddenly worse, seemingly an effect of my extremely altered gait. I had a very specific gait for years that minimized my foot pain. No follow through to the forefoot. Now, it all seems to be that all of my weight is on the forefoot. In any case, my feet and their various types of pain, which haven't bugged me for a while, are worse again, with new pain in my "good" right foot and pain crossing over to nerve pain in my left foot. I have been trying to only use my walker as needed, which is about 80% of the day, but maybe for gait purposes, I should just use it all the time. I still can't walk anywhere near normally, but it seems less deformed with the walker.</p><p>Next up, aching muscles and bones in my legs. They just ached all day. Then of course, my knees. They're bitchy as ever. I guess it's technically less, because I make less childbirth sounds when I sit down or try to bend my legs after standing. But barely less. Just barely.</p><p>My hips are still having the new pain when sitting (essentially all day). They hurt in bed and in my recliner with the ergonomic seating. My hips just ache and sometimes throb, and occasionally I feel a bubble in there.</p><p>My hands are similar. I may have another 2% improvement in my right hand. It's subtle. My left hand is probably 2% worse. Worse pain at the base of thumb and continued in the inner wrist tendons.</p><p>My flank pain is still there, worst in the morning. My old thoracic spine pain is still there. It's the same pain that started the day after our wedding and used to flare up now and then, but I could manage it with certain PT exercises. Now, it's permanent. My neck was still a bit troublesome today. I really need that to stay strong. My muscles and my fusion and my bones and all of it. Not allowed to deteriorate.</p><p>My jaw pain is still acting up. Hurts to the touch. Hurts to open my mouth. I don't eat anything that takes much chewing, but clenching hurts too. More right side today.</p><p>And finally, the brain pain.</p><p>Today was another brainstem aura day. By the time I finished a meal at 6:00, I knew what was in store. My senses were heightened. I was in pretty bad shape before that too. I knew the house visit wasn't possible. G went. I haven't heard yet how it went. There's no use really, because I clearly can't go anywhere yet. This flare is not letting up. Today would have been the perfect circumstances to trigger a horrific response with a car ride. When my senses were all going on high alert and my body needed to do its horrible shut down thing. If I had been out in the car during that, my system would have been completely overloaded and responded badly. I was already going through hell just hunkering down through it alone in the dark silence. The aura lasted from 6:15 to about 8:30. My hips were aching so badly. There's just no way to be comfortable. But at least I didn't make it worse. I blame the barometric drop for the last two days being worse. But it's always something, isn't it?</p><p>Temp is 100.2 tonight. HR 93. Ankles remain swollen and cough comes and goes. Left knee is throbbing constantly tonight. I know I've said it, but I'm tired. I'm tired of this bodily assault. I need a break. My body needs rest. None of this is restful. I can't rest in this state. I don't know how I'll recover from this. I'm still really so very grateful for the mild temperatures allowing for freedom. I still can't imagine being confined to the bedroom, without my recliner and my place to eat. I still haven't figured out how to eat in the bedroom since this progression.</p><p>Match 28th was yet another before and after event in my life. Another moment when everything got worse on a dime. I'm tired. Tired of living through this and accepting that this is just how it is now.</p><p>Another thing I am endlessly grateful for: the enormous efforts of Mom and Gustavo to help me navigate this and help me with so many practical things I can no longer do for myself. It feels scary and horrible to be this reliant on others. Others who can't be around all the time. How am I supposed to face it? I feel so sad and scared when I have the bandwidth to feel anything.</p><p>May 1 So grateful for the still cool enough weather, even though the low pressure wreaks such havoc. Mostly the same day. HR was 100 earlier (between first and second meal). Milder aura without full loss of consciousness today (so thankful). All pains about the same as well as mobility impairment. Although I rely on the walker more and more of the time. I only take a couple steps around the kitchen with full hands without it. Maybe 3 or 4 steps here or there. The amount of weight I put on it varies. When I first wake up, it's as much as possible, although I still can't put weight on my right wrist, so it's awkward. I bend over and lean on my forearm. I would like to be able to walk upright again, despite the upright walker not working out. (Anyone need an upright walker? It's available.)</p><p>Fever tonight feels high. 100.4. Coughing. Knees are throbbing again tonight. This nighttime throbbing feels like my knees are desperate to not be compressed. But I need compression to walk, and I can't be taking them on and off. Just have to count down the painful minutes until bed.</p><p>I still usually fall asleep in the recliner so that Gustavo can help me into bed when he wakes up. It's only 30 minutes or so between when I tend to fall asleep and when he tends to wake up. The help with my compression knee braces is the most essential. It's painful getting them on and off due to both the tenderness and the pain of resisting against the force. But he does it quickly and has perfected the technique. It's kind of a sweet ritual, believe it or not. Me moaning as I painfully try to remove some clothes and then him helping me with the last step and kissing me goodnight.</p><p>Appointment with psychiatrist today. He's great, but I don't think he realizes how low my mental health is on the priorities right now. Survival mode, baby. One step after another. There's just too many other practical crises. I'm tired. Have I said I'm tired? Yes, physically, but more so existentially, I think. I'm tired of existing. I'm tired of enduring. Give me rest. This body still can't rest. I'm grateful I do manage to sleep with my elaborate pillow/cushion setup and careful positioning and sedatives. Grateful the bedroom isn't hot and humid. I can't be grateful for a single wake-up. Those suck. Sometimes, I feel almost relaxed, but the second I try to move anything, I moan and groan and often cry out in pain. And another excruciating day of existence begins.</p><p>May 2 It's hard to imagine a relatively low-maintenance day being any harder than today. But my environmental needs have actually been quite low. Run the air purifiers on full blast in whichever room I'm not in. That's the whole air management plan. But all of that changes over 70 degrees. No, not exactly, but pretty close. The warmer, more humid days are coming, and bringing all the amplified scents. There will be bedroom confinement to avoid those seeping scents, which means somehow spending nearly all time in bed. This disfigured version of my body is NOT happy in my sitting-in-bed position. I struggle even in my perfectly customized recliner. Being in bed is painful. My sacrum and now my hips suffer most, but also my spine. Also, getting into bed is a bear of a task I will have to do many times a day. It requires stepping up on a step stool and lowering myself onto the elevated mattress. And then popping those knees so they don't stay stuck straight and full of pressure. And then, I am already struggling so much with the frequent walks from the living room to the kitchen. The distance from the bedroom is further, and I'll also be wishing I could move faster to reduce scent exposure. I will also wish I could move through the doorway faster to lessen how much fumes get into the bedroom. I won't be able to zip up the door with plastic, because I'm simply not capable.</p><p>And then there's transporting food. I have barely been managing it. But reaching the bedroom will be harder. And then what? Where do I eat in the bedroom? I bought a new tray and tried eating in the chair, but I ended up with unbearable sacrum and hip pain. But I can no longer eat on a tray in bed. I believe it's impossible now. I don't have a solution yet for where and how to eat. I have just the right set up in the living room. I have my support rails and my coccyx cushion and tray and so much padding all just right. I don't believe I can reproduce it.</p><p>I also have issues preparing my daily meals. I don't cook during the day, but I do assemble my meals, and it's rather labor-intensive at this point. I may have to change up my routine, because carrying plates and food back and forth in the kitchen is now a huge strain, and I can't use my walker. I need to put so much weight on my walker most of the time at this point, and I can't do that during food prep. So that's still a big challenge.</p><p>And all of this is ignoring the actual temperature. The bedroom is about 3 degrees warmer than regular room temperature due to the air purifier, so it will be warm. My fever won't like it. My sleep will suffer. I don't know exactly when that will become problematic. But anything above about 72 bedroom temp is detrimental to sleep.</p><p>And then there's air management. In warmer weather, I generally have to manage the air frequently. Check the outdoor air. Ventilate one room at a time whenever possible. Perhaps buy myself some time in the living room if the conditions are right. But I can't be constantly getting up and moving quickly to set up fans and ventilate. I can barely open the patio door. I can't lift or turn on the fan or open the window. So what? Just no time outside of the bedroom? Just none. When I get access to fresh air, I feel revived. How am I supposed to get by?</p><p>My god. Just today, without any of that nonsense, has felt impossible. I was sobbing uncontrollably tonight after some stoic days. Maybe I was just allowed to cry and feel my feelings because the migraine pain was lower. But I was mourning so many things. The difficulties of my everyday life astound me. The amount of pain and struggle to barely meet my basic needs. I'm afraid I'll give up on food. It's the great challenge of my day at this point, and it feels basically constant. Maybe I give up. Maybe this is the breaking point. Call it a day. I gave it my all. F. I don't know.</p><p>Today was about par for the course. Fever 100 most of the day. 100.3 tonight. HR 90-95. Coughing on and off, more at night. Did not lose consciousness, but plenty of stupor. Grateful for that. Shoulders are starting to hurt as I lower myself onto the toilet. Great. Plus, my feet are starting to hurt too much with my go-to running shoes, leaving me with only my one pair of walking shoes, which I am grateful for. But I bought a TON of these running shoes when they were discontinued. I still have flank pain, and pee smells bad, quite frankly. Is there any chance of kidney involvement? An infection driving some of this? I'm not sure that happens without urinary tract pain, and my bladder is quite sensitive, so I would feel it. But who knows?</p><p>Mobility, body pain, and those freaking bubbles in my knees needing to be popped or sometimes just dispersed (?) every single time I sit from standing. It's a torture I have to go through maybe 30 times a day? Maybe quite a bit more. I've never counted. Crying out as I sit on the toilet. Crying out each time I sit down, forcing my legs to bend to release the awful pressure.</p><p>Oh, I wish it would stop. But it won't stop, and it won't get easier. I'm done. I know I can't be, but I'm done anyway.</p><p>May 3 More of the same kind of day. HR 98 when I checked. Temp around 100. Coughing at night, along with the heartburn. Dealing with some digestive dysregulation. No environmental problems. (A couple weeks ago, G talked to the neighbor when he saw her lighting up her strawberry cigarette outside. I haven't noticed it inside since!) Prolonged episodes of stupor, but no loss of consciousness. Mobility and body pain has been more of the same. We're at a delightful 44 degrees tonight, so 72 in the living room. No air problems, although it's feeling/smelling a bit stuffy in here. Not prepared for warmer weather and increased scents and increased confinement.</p><p>I see how repetitive this is getting, and I'm even boring myself looking over this, so maybe I'll stop writing, or I'll just keep it briefer.</p><p>Thanks for checking in. I have no idea how to keep going, but I'm still here in my private hell, watching it all burn down around me.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbn9t5cV21-NhcbsBXiM75OhvkgR5kgxsNoRBaVPJNqaLYg26icUrvuZdeyF1m3LMdsBGQnuDCYB2gx4CmGWF8HBJXZJK0YK0JegcpGxCnqy8dtQfyrFsyEgnS9t8meNj2OO5D6QJepuBhe3IsBfzP_xnaMWAEcwGHzNf5FRehv6Y2odyV-8UmWSNQ/s4032/20230429_003611.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbn9t5cV21-NhcbsBXiM75OhvkgR5kgxsNoRBaVPJNqaLYg26icUrvuZdeyF1m3LMdsBGQnuDCYB2gx4CmGWF8HBJXZJK0YK0JegcpGxCnqy8dtQfyrFsyEgnS9t8meNj2OO5D6QJepuBhe3IsBfzP_xnaMWAEcwGHzNf5FRehv6Y2odyV-8UmWSNQ/s320/20230429_003611.jpg" width="240" /></a></div><div style="text-align: center;">My newly swollen ankles. Again, I didn't know to take a "before" photo for comparison.</div><p></p>Carolyn Medranohttp://www.blogger.com/profile/02811093427920453122noreply@blogger.comtag:blogger.com,1999:blog-833972720679789479.post-63811765788941553682023-04-19T04:20:00.000-05:002023-04-19T04:20:01.151-05:00Mid April 2023<p><span style="font-size: medium;">I'm finally posting this explanation I wrote up a while back of one of the thorns in my side: Migraine with Brainstem Aura accompanied by Disorders of Consciousness</span></p><p><span style="font-size: medium;">https://www.dovepress.com/migraine-with-brainstem-aura-accompanied-by-disorders-of-consciousness-peer-reviewed-fulltext-article-JPR#t0001</span></p><p><span style="font-size: medium;">https://migrainetrust.org/understand-migraine/types-of-migraine/migraine-with-brainstem-aura/</span></p><p><span style="font-size: medium;">For so long, I've been experiencing this disordered consciousness and calling it "passing out," even though that doesn't describe my experience at all. I don't remember which of my many neurologists mentioned basilar migraine or brainstem aura as being responsible for these horrendous episodes.</span></p><p><span style="font-size: medium;">But I feel the need to describe them better, because while it sounds easier to say, "I was passed out for 2 hours," it frustratingly miscategorizes the horrific experience.</span></p><p><span style="font-size: medium;">So, here's what I tend to experience. Honestly, it used to have a much more perfect shape of typical migraine aura, but with chronic intractable migraine, this state comes and goes without the same form it might otherwise have (and used to have for me before progressing to a chronic waxing and waning state.)</span></p><p><span style="font-size: medium;">Frequent symptoms:</span></p><p><span style="font-size: medium;">I might start with a yawning spell or get the chills. This prelude used to happen more but less so now. It was a nice dead giveaway that I was about to be overcome.</span></p><p><span style="font-size: medium;">I do tend to have tachycardia in the hours before an episode. Around 100 or higher, depending on the heat or severity.</span></p><p><span style="font-size: medium;">Vertigo</span></p><p><span style="font-size: medium;">Tinnitus</span></p><p><span style="font-size: medium;">Tingling in legs/arms/head</span></p><p><span style="font-size: medium;">Abdominal inflammation/heartburn</span></p><p><span style="font-size: medium;">Heart pounds as I feel extremely heavy</span></p><p><span style="font-size: medium;">All sounds become amplified to a cartoonish degree, and they tend to startle me.</span></p><p><span style="font-size: medium;">Difficulty speaking followed by difficulty understanding</span></p><p><span style="font-size: medium;">Eyes get very heavy as heart pounds with tingles up and down my body</span></p><p><span style="font-size: medium;">Full body aches and head feels like imploding</span></p><p><span style="font-size: medium;">Face feels like a mask that I can't move</span></p><p><span style="font-size: medium;">Intense sensation of nausea as paralysis sets in</span></p><p><span style="font-size: medium;">I tend to go in and out of consciousness, being disturbed/startled by any sound or movement. I also get the sensation of falling into unconsciousness repeatedly. Hard to describe.</span></p><p><span style="font-size: medium;">At this time, the body feels like it is making a massive effort to remain conscious. It is not a restful feeling with all of this chaos happening in the body.</span></p><p><span style="font-size: medium;">During severe episodes, I can track the time I lost to full unconsciousness, where nothing could rouse me. This lasts up to 3 hours. (I have had Neuro checks while in this state and found to have no reflexes.) But quite often, I actually come in and out repeatedly for hours.</span></p><p><span style="font-size: medium;">I tend to come to awareness of my surroundings first without being able to move, then gradually recovering. As I gain alertness, I sometimes have a sudden need to evacuate bladder/bowel.</span></p><p><span style="font-size: medium;">After I am awake, I lack coordination, have vertigo, and the pain of the lasting headache sets in. Location is usually generally pretty global, focused above both temples with continued tingling scalp and tinnitus. Sometimes icepick headaches follow.</span></p><p><span style="font-size: medium;">This is absolutely not a restful state. It is like a storm going on in my body. In fact, migraine has been described as an electric storm in the brain, which alters blood flow and causes inflammation of the meninges and nerves.</span></p><p><span style="font-size: medium;">https://www.everydayhealth.com/outside-in/what-happens-body-during-migraine/</span></p><p><span style="font-size: medium;">Following an episode, I remain in a state of cognitive overwhelm, my brain tiring quickly from any type of stimulus, leading to frequent mental shutdowns. I can fall back into a stupor mid-sentence.</span></p><p><span style="font-size: medium;">New migraines come in while the previous one is still in progress, leaving me in this state constantly to varying degrees.</span></p><p><span style="font-size: medium;">The experience is reminiscent of symptoms of a traumatic brain injury. Brain rest is the only relief. Minimal light, sound, movement, talking, and cognitive effort. I have a lot of trouble understanding what is being said, following a conversation, and retaining information.</span></p><p><span style="font-size: medium;">This is not a fleeting state. And it is not a nap. It is scientifically classified as stupor/coma in the above studies, the coma version confirmed by my failed reflex testing.</span></p><p><span style="font-size: medium;">An incredibly frustrating part is the cognitive overwhelm triggering more and worse episodes. This leads me to avoid interacting beyond necessary much of the time. Even talking can set it off. </span></p><p><span style="font-size: medium;">I have reached this point for various reasons, primarily inability to tolerate migraine treatments, although they had already become largely unmanageable when that happened. Either way, untreated chronic migraine can lead to a transformation into a state of constant migraine. Mine just happens to come in various shades, including various types of migraines.</span></p><p><span style="font-size: medium;"><br /></span></p><p><span style="font-size: medium;">OK. That's my explanation, for the record, of my experiences with frequent loss of consciousness.</span></p><p><span style="font-size: medium;">Now, I would like to continue sharing my day-by-day journal of symptoms and challenges.</span></p><p><span style="font-size: medium;">April 8</span></p><p><span style="font-size: medium;">I had to switch my rings to my right hand, because for the first time, they won't stay on my left. That must be a further show of deterioration. I need to take video of my movement to document what is happening. My legs won't straighten, so I'm hunched. I can usually only take the smallest steps with legs staying at the same angle of somewhat bent. My leg muscles are visibly wasted, and they ache terribly. I think this is where the weight loss came from.</span></p><p><span style="font-size: medium;">Just 11 days after my last house visit/car ride, when the switch flipped giving me a whole new body, I painstakingly decided to go on another house visit. G was incredibly careful with the route and the driving. Incredibly helpful moving me around. It was very sad to learn that I cannot navigate even a single step anymore. He had to take basically my whole body weight going up a step, and I rode on his back going down the steps. We couldn't have done any better to be as gentle on my body as possible. We did well. But not well enough to avoid consequences. I did not feel nearly as shaken up as last time. But I did go in the house, and it was not unscented to me. Fragrance was evident. As always, it's immediate upon opening the door, I'm aware of the fragrance. I don't know why I even go in. It's instantly evident. I guess a part of me wishes it will be a scent that is highly localized somehow or that it is a scent that somehow won't hurt me. But that is delusional. Right after the house, I developed a new left ear/swallowing type of pain. And upon arriving at home, right after rinsing my sinuses and drinking some baking soda for the horrendous heartburn, I was struck with the brainstem aura with prolonged, repeated loss of consciousness yet again for over two hours. All the horrendous accompanying sensations. All sound amplified and painfully startling. Heart pounding. Burning face. Body feels like it weighs a ton when I am paralyzed. Repeated sensation of falling while passing out over and over again for hours. I don't know how long I was actually unconscious and how long I was in and out. It felt endless. It was hours before I could rouse myself enough to eat a meal.</span></p><p><span style="font-size: medium;">***And I'm interrupting my diary notes to say that this has happened during the same time of day every day since that day. 7:00-9:30 seems to be my new aura window.***</span></p><p><span style="font-size: medium;">Upon rousing, I had marked weakness, needed help walking at first, and also needed help to open food containers. I had lost so much strength and could barely lift a container with a few cooked vegetables inside. My knees are also burning more than ever before. My heartburn is insane. Fever at 99.9.</span></p><p><span style="font-size: medium;">Admittedly, this isn't close to my worst episode. I don't know how tomorrow will be. My fever and cough are not as bad as they have been. Fever peaked on April 6, I believe, at 100.9. I've been sweating through my clothes and into my sheets with this fever every night since March 28th, that fateful day.</span></p><p><span style="font-size: medium;">Life is about to get much harder with the temperature. I won't have the luxury of passing out in my recliner, and trying to manage to do everything in the bedroom will be even harder. Being confined to only one position with nowhere to be but bed increases pain and weakness so much. It's very hard on my sacrum, tailbone, and spine. Getting in and out of bed is getting close to impossible. And eating whole meals in the bedroom cannot be how it was before, since it was a careful balancing act using the bed tray. I now can't really get my legs under the bed tray since they don't bend far enough. These warmer months will be so hard. Never any peace and quiet, because I'll never be able to be in a room without the purifier on full blast. Relentless scents and wind. Plus, that air purifier heats the room up another 3 degrees. Unfathomable in these upcoming warm months . That's just no rest. And functioning will be even harder. I won't be able to hurry around to avoid the scents, because my body only moves in slow motion now. To a shocking degree.</span></p><p><span style="font-size: medium;">This is why we keep searching. But another lesson we learned today is that I cannot even manage a tiny stair. So a flat surface will be necessary. This place was almost impossible to get around, even the tiny space. I am going to be getting an upright walker and hoping to be able to use that for some time before full wheelchair. I would get one now, but it's difficult to imagine being able to use it in this space. But it would be downright impossible to get around ground that isn't flat. G had to lift me, again, as an invalid over a few of the steps. Basically a limp body. It is hard to describe how bad this feels, despite being a self-accepting disabled person since my 19th birthday. My first wheelchair was all relief. There was grief, of course, but I don't mind using a wheelchair part time. However, I am fully unequipped to manage life without any mobility. I think many spatial changes would be necessary. But the problem is that it's not just the walking. It's needing assistance with nearly every activity of daily living. Sure, I'm toileting myself now. But that's because my left hand can still manage that most of the time. But it hurts. And the left hand won't hold on forever. The right hand is almost useless. I also have the most trouble walking when I first wake up, for that first bathroom trip. I can barely hobble my way there, despite trying to stretch and straighten my legs before standing. My legs are bent in a deformed way with muscles shriveled away. I am not able to accept this right now. That this is just how it will be until it gets even worse.</span></p><p><span style="font-size: medium;">Anyway, all we can do is use this info going forward. All that we learned today, we will use. I feel less confident each time the door opens to a scented home that is meant to be unscented. I don't know how to keep hoping. I don't know how to keep using my body as a test dummy. How to keep abusing myself that way. <i>I don't know how I will ever find my place. And what will be left of me when I finally do?</i></span></p><p><span style="font-size: medium;">April 9 more prolonged and transient loss of consciousness. Preceded by yawning spell (very painful yawning) Pain in left ear/jaw became a 8-9 with yawning and swallowing.</span></p><p><span style="font-size: medium;">Digestion got dysregulated by being unconscious so long yesterday and again today and meals running late. Heartburn and bloating are the worst, along with loss of bowel regularity. More scent issues today, but I didn't retreat to the bedroom yet. Days are numbered. Knees are very bubbly, stiff, and hot. I would ice them all the time, but the cool only lasts a few minutes since my knees put out so much heat. G stayed home from Easter to be with me, and then I was mostly unconscious. Cough persists daily, worsening at night. Fever not too high. 99.7 Not sleeping as well/long as I was. Mid back pain, presumably from hunching so much.</span></p><p><span style="font-size: medium;">April 10 Had trouble sleeping last night in the warmer bedroom. (77 degrees) Air purifier adds 3 degrees. Very hard evening. Losing consciousness for a while. That horrific feeling I can never get used to. Intense left ear/face pain. Had to cook a lot of food unaided (with tomorrow being a warmer day, I don't know if I will have access outside the bedroom). Then, I had to shower. Coughed so hard during the shower and after. It feels difficult to breathe. Could barely use hands to wash my hair in the shower. Body ache and pain afterward intense. Widespread 8 with some hot spots. Feeling nauseated and short of breath and hot/cold. Temp 99.8.</span></p><p><span style="font-size: medium;">April 11 Slept in warm bedroom (77.5). Couldn't sleep enough. Woke up with fever of 100. Some daytime exposures due to warmer temperatures and vape fumes. 6:30-8:30 passing out time again. Fresh air access at night. Asthmatic breathing/coughing constant since last night. Nighttime fever 100.6. Hot and cold. Jaw/Facial pain less today. Joint pain a half a degree less today (maybe?). Plaques are softening/fading. But fever and cough are persisting. Cough is the worst it has been. Very feverish late 100.6, 90/60p90. I cannot sleep well due to the elevated temperature and fever and pounding heart.</span></p><p><span style="font-size: medium;">April 12 Bedroom confinement all day. 79.5 degrees for sleep and daytime. Neighbor used horrible fragrance today. Stinks up the lobby and our bathroom worst, but detectable throughout the apartment. Also repeated vape exposure inside and outside my open windows, filling the place. Fever same 100.5. Asthmatic cough again. Lung pain.</span></p><p><span style="font-size: medium;">Unbelievably bad walking after rest time. Not sure how to keep walking to the bathroom when I wake up. Legs no longer straighten under any circumstance. Shrinking leg muscles feel like they're dying painfully. Barely any leg muscle left. Progress has been so fast. Everything deteriorating. My legs don't straighten, but I can also hardly bend them. The bubble popping inside the joint is worst when I try to bend my leg to sit down. More severe in right knee. I haven't figured out how to reliably avoid the excruciating pop. But I have no choice but to try.</span></p><p><span style="font-size: medium;">Bedtime vitals (6am) 88/60p98. Bedroom temp 80.</span></p><p><span style="font-size: medium;">April 13 only slept 6:30-12:00. Worried about the effects. More summer weather and bedroom confinement due to smelliness.</span></p><p><span style="font-size: medium;">Day full of consciousness struggles! No naps. No drifting off. It's the migraine with brainstem aura symptoms more or less the entire day. This is NOT the same as when I used to pass out from low blood pressure or blood volume or whatever. This is a horrendous state. A neurological storm. I did not get to rest all day. My body could not rest with the onslaught of symptoms pushing me in and out of consciousness. I struggled most between 2 and 3, 4:30 and 6, 7 and 9, 10-10:30, and again 1-2am. I missed class, which I never do. Not sure if this would have been avoidable if I had tried to "let" my body continue "passing out" all afternoon. I think the amount of sleep deprivation plus the hot apartment (79.5) were way too much. Plus the overnight fever. I desperately want to figure out how to sleep when I have a fever AND the apartment is hot. I think I need to time my meds differently and plan for biphasic sleep again, but that means two wake ups, and waking up and getting out of bed is a horrible time in my day. I don't want to do it twice! But sleep is too essential to avoid more brainstorm auras. My heart rate has been in the 90s again all day. Fever a bit lower. My body feels so hot, but is only 100.2 tonight.</span></p><p><span style="font-size: medium;">April 15 Another horrible, hot bedroom day. Sleeping at 80 degrees is sickening. Biphasic schedule necessary to make the meds last longer. So my day started after 3pm. Confinement in 80 degrees bedroom. Heart rate often above 100. Brainstem aura from 7:15-9:30. I came out slowly for the need to eat. Stayed conscious after that, but felt awful. Finally fresh cool air from 1:00-4:30. Bedroom down to 72 to start. Hoping I can sleep better despite fever asthma and heartburn (and joints, of course).</span></p><p><span style="font-size: medium;">April 16 We had a nice cool down, and after a night exposed to clean cool outdoor air, I slept comfortably. (Although I'm still sweating through my sheets with this fever.) (Bedroom about 73) Waking up, movement was excruciating. Today, much cooler but big pressure drop along with storm and temp drop. Body pain was terrible. Mobility and hand ability were low. Hard to hold things. I needed my walker much of the day, although I still can't put any weight on my right wrist. Left hand is more functional but still painful. Back is getting very sore from hunching so much of the time. Terrible bubble pops causing worse stiffness. Fever consistently 100 today. Asthmatic cough got worse at night. Invasive fragrance improved with temp drop. So I got to relax in my recliner finally after a shower. Just barely maintained consciousness today. Each day is an enormous struggle. Cannot imagine continuing at this severity.</span></p><p><span style="font-size: medium;">April 17 Apartment is nice and cool, although quite chilly when I had to ventilate with no heat. But worth it, as usual, to get fresh, clean air, whatever the temperature. With a cool bedroom, I was able to sleep all in one go again. A hot bedroom is TERRIBLE for insomnia (especially with a fever). And we were at 80 degrees in the bedroom. I still had my overnight fever sweats. But I woke up easier. Fever has been 99.7-100.3 today. Feels terrible. I actually functioned a little more independently today. I ordered a new upright walker to try to help with my mobility limitations, inability to put weight on wrists, and increasing back pain from hunching too much. In my mid-morning time (about 4-5pm), I was tachycardic and weak. Heart rate 103. And my body seems to have found a new circadian schedule for when the brainstem aura tends to come. It seems to be happening more often between 7:30-9:30 at night. I'd normally eat my third meal around 8, so this really interferes with my eating schedule. My knees have been bubbly and warm as ever. There's the extreme stiffness when I first stand up, and then the longer I stand, the more bubbles I seem to accumulate, making the next knee bend so painful. Hands and wrists are the same. Asthmatic cough is worse tonight. And it really aches in my ribcage when I cough, probably pleurisy again, but it could be muscular, I guess. I almost published this update to my blog, but then got distracted reading my blog, which happens so often. I guess I find myself endlessly entertaining! Not really. It's actually really hard to read that my life is on a revolving and ever-worsening loop of suffering. I've yet again noted that there's no point in expressing emotions, because I've already expressed them all, for years. I also noted that I was totally wrong about no fever flares since 2020. I absolutely haven't gone a year without it.</span></p><p><span style="font-size: medium;"></span></p><p><span style="font-size: medium;">I had a tough decision to make today. Whether or not to venture out again already, in the midst of this bodily thunderstorm, to visit a house. There's been a shift in the housing market this week that is not in my favor. A house I was interested in over the weekend had 40 house visits in the first two days on the market. There is no possible way to clear out the scent of that many visitors. And there's no time to ask screening questions. And there's no time for someone else to visit first and pre-sniff the house for me. So there was a cute little house in a cute little neighborhood, vacated, that I could have gone to visit tomorrow. But without screening questions, I had to rely on photos. And a can of air freshener (f-er) was visible in a main floor bathroom. Based on everything I've seen so far, there is no way that house won't stink at first entryway whiff. Not to mention a more practical matter that I cannot walk stairs! And there are stairs to get into the houses. Gustavo can't come with on a weekday, so there's no one to lift me up and down the stairs. It's not that stairs hurt. It's that I'm now literally incapable. So I believe house shopping will have to go on a hold, preferably at least until my fever and asthma stop. Even more ideally, I would come a bit more out of this flare and get a slight pain reduction and increased functioning. I know I've had fever flares before. And they end. So I just need to wait it out, I think. But with the tumultuous barometer and plenty more hot nights ahead, my body will be under plenty of stress. So I'm not sure when it will calm. I can't imagine going on if it doesn't calm. I am trapped in this torture chamber body. I need a break. A respite. At least I'm in the recliner again today, and I can expect a possibly decent sleep again in this chilly apartment.</span></p><p><span style="font-size: medium;">April 18 I am very at peace with having made the right decision to not visit the house today. My fever started at 100, never lower. Up to 100.7 tonight. My heart rate hasn't been below 100 all day. All signs that my body is in high distress, and this flare is not slowing down. Also, I finally attended part of a Spanish group chat, but I wasn't able to talk due to the breathing issue and coughing. My triggers for asthmatic breathing and coughing seem to be: eating, allergens in the outdoor air, and evenings. Although today, it was nearly throughout the day. I am so tired of coughing and not getting a good breath. This is nothing like the throat closing spells of my teens. This, I feel in my lungs. I bet an inhaler would feel good if they weren't full of triggers. Although I don't need that crazy, manic energy.</span></p><p><span style="font-size: medium;">I had yet another brainstem aura episode from 7:30-9:15, although I felt it coming a lot longer. I was also getting skunked by the neighbor vaper, yet again. I am so relieved the temperature has been lower, so I can sleep better. I know it won't last, but I'm so grateful.</span></p><p><span style="font-size: medium;">My knees are as horrible as they've ever been. My muscle wasting looks crazy. I'm not sure if I should share photos, because they just look so ugly and deformed.</span></p><p><span style="font-size: medium;">Oh well. I might as well, for the record. I honestly just want there to be a record of what happened to me. I lost another mast cell friend recently. Another truly tragic loss. It's hard to bear. When they tell you people don't really die from mast cell disease or autoimmune disease, they're lying. Yes, the cause of death tends to be more complicated. But these complications can and do happen, and they are incredibly difficult to manage (especially for those of us that don't tolerate medicine, like my friend).</span></p><p><span style="font-size: medium;">I'm sorry for the repetitiveness of this post. It was written at many different times. Thanks for reading and caring.</span></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimj-sXkZWxILvgFKuu3L8jHlgsZ2rZ4TV2vZuHvVbXk_6qf6Ith6PjLDuqM5qJpsAt6AEVBHDyBOm4JhZnpeyk3MvaCc_3F-QEcpLHhzgadAyboXjNhrs9KoMGp63GXJrwY2pQoURb7JsWbjD9tXkupVxin8gsNLdP0Bm9HsR8wrB8jd6tesZ0s7Gv/s4032/20230407_040610.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-size: medium;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimj-sXkZWxILvgFKuu3L8jHlgsZ2rZ4TV2vZuHvVbXk_6qf6Ith6PjLDuqM5qJpsAt6AEVBHDyBOm4JhZnpeyk3MvaCc_3F-QEcpLHhzgadAyboXjNhrs9KoMGp63GXJrwY2pQoURb7JsWbjD9tXkupVxin8gsNLdP0Bm9HsR8wrB8jd6tesZ0s7Gv/s320/20230407_040610.jpg" width="240" /></span></a></div><span style="font-size: medium;"><br /></span><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiminXhHPtGRoRughB2ojNqs5x9aJ6OoSqH941i1tgCxi7Av1fPfD0bhZNX5BfU4BAoFZo5yMXeCAQVyFXQ4__6H3d8XyYL0G7kvD6MbaVXXLUj3Jrv1hxzbly79IVMlu3g4L7hELrUJcdAPwUmnEibnx4yHxURGXiEP9nWMl8tK9iIJQp5JYHeyQJX/s4032/20230415_164834.jpg" imageanchor="1" style="margin-left: 1em; 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margin-right: 1em;"><span style="font-size: medium;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFEjuzWF8hPYjb4E2M-72suPnegcvkcfBzvrn_s81GfvZyS5iiDSG_t3hudjC3WvHb5AYETM7VQkr4CwssX06Q11t1M521skirQd1xgqbYpFK_yA_BLq1zCymyucFj4GxcV6roO3BGcdw80TpQ_C7qb3eCtNaT-Opsw4YqUezgzmeeaUa4OFnahvQH/s320/20230316_195054.jpg" width="240" /></span></a></div><span style="font-size: medium;"><br /></span><p><span style="font-size: medium;"><br /></span></p><span style="font-size: medium;">Yes, I've taken a lot of photos of my legs. I'm truly shocked by the progression and degeneration. And it's also a shock to, for once, have something quite visible happening. I guess the crash weight loss the last several years was already visible. But I'm so used to the idea that I have an invisible illness. My plaques are quite palpable, but pale in color. My explanation is that I have very little melanin! But little by little, the invisible becomes visible. I know my face has changed so much. Swollen eyes. Unevenly swollen cheeks. But these new developments are much more blatant. I'm not much for physical appearance these days, but no one wants to feel like a deformed version of themself.<br /></span><p></p><p><span style="font-size: medium;">Thanks for checking in. I expect to write again soon, as it seems that journaling has become a helpful tool again. I'm not proofreading, however, if you couldn't tell.</span></p>Carolyn Medranohttp://www.blogger.com/profile/02811093427920453122noreply@blogger.comtag:blogger.com,1999:blog-833972720679789479.post-28485433038656789962023-04-02T03:17:00.007-05:002023-04-02T04:56:59.229-05:00Another Progression<span style="font-size: medium;">I thought this all started in February, but upon coming to my blog, I see that much of this had started in January.<br /><br />These are the new symptoms:<br /><br />Heat in knees- using a heating blanket over my legs makes my knees throb and turn red with heat--never felt this before<br /><br />Fluid in knees- some parts spongy, others firm, restricts movement, stiffness, pain when bent or straight, worst in morning or after inactivity, tender to the touch--all new<br /><br />Bubbles popping in knees- very painful and limits walking. Actually happens constantly when walking, distorting my gait. When a bubble pops during weight bearing, my leg collapses and I fall and cry out in pain--all new<br /><br />A few plaques: one on each thigh, back of scalp, and a little on the back/side of neck. Mildly itchy and occasionally stings a bit<br /><br />A lot of new rough/bumpy skin patches that itch mildly. The first few weeks, I could feel at least one new patch every single day.<br /><br />Severe pain that started in thumb joint in right hand, but spread to other joints in the hand, lost grip strength, sharp pain on moving wrong<br /><br />Base of both hands became too painful to use a cane or walker.</span><div><span style="font-size: medium;"><br />Weight loss from 99 to 92 lbs. in March, despite adding a new food (hemp seeds) and calories<br /><br />Severe upper back pain that has lessened in intensity with extra bedding. It was preventing sleep, waking up in pain. But I became newly sensitized to my bedding (memory foam) that I can't live without. Big source of stress trying to figure out how to keep being able to sleep.<br /><br />Jaw pain so severe that eating was very difficult for at least a month. It’s eased off but not gone. Does anything ever really go away? It’s all so progressive.<br /><br />Neuromuscular stuff: Aside from all of this, I seem to be losing access to my muscles at times. My legs are extremely weak, making standing up and walking even more difficult. My right grip strength is also gone. And the apparent impossibility of correcting the vision in my right eye is thought to be due to a muscular issue, where the muscles that help the eye focus are not working correctly. My vision goes in and out of focus a lot, and my right eye cannot be corrected. (I believe this after 2+ hours of intensive eye exams.)<br /><br />All of my other joints are feeling more strain due to the extreme weakness and compensation. I am quickly becoming deformed.<br /><br /><br />Precipitating factors:<br /><br />7 week migraine with brainstem aura associated with the use of our building’s heat. I had to stop using the heat, and that originally resolved the issue with losing consciousness completely around the New Year. But now other triggers are causing these episodes frequently. Frequent repeated and prolonged loss of consciousness with all associated aura symptoms (I’ll describe these another time.)<br /><br />Neighbor started vaping inside after the new year, and vape fumes fill our apartment (We got a new mega air purifier to help.--It does. But not a cure-all.)<br /><br />Left the apartment with much more frequency for eye exams and housing search visits. In case you were wondering if leaving home would ease my symptoms.</span></div><div><span style="font-size: large;"><br /></span></div><div><span style="font-size: large;">Various exposures/repercussions</span></div><div><span style="font-size: medium;"><br />Spike in stress due to the housing search. Episodes of panic and increased anxiety related to this hopeless search and the effects on my body of "testing out" new environments. I have truly hated this fruitless process, and the toll it takes on my body, my wellbeing, and my relationships. Most of the time, I am not even able to engage in thinking about it. And it has made me so irritable and difficult to be around and interact with.<br /><br />Interaction with medical personnel also triggers high stress.<br /><br />The time change really affected me, as usual, and I still haven’t regulated since then. It’s such an extra bodily stressor for me.<br /><br /><br />March 28th: Went on a house visit, car ride on the highway. Never entered the home. But discomfort in the car turned to full body pain on the way home. I used a cane to get to the car, but upon getting out, I could no longer use a walker or a cane due to hand pain. Mobility almost completely gone, as only tiny steps with crooked, stiff legs are possible.<br /><br />March 29th: I first noticed the fever. Chills and body pain. Skin sensitivity. Heart rate elevated<br /><br />March 30th: temp reached 100.5. Heart rate frequently elevating throughout the day while feeling faint (up to 100). Skin sensitivity I associate with fever/infection as well as increased head pain, muscle ache, bladder pain, and malaise/nausea. Flank pain and pleurisy pain. Dry cough began late at night. Bad headache. Late night when vitals would normally be very low, heart pounding with elevated vitals. 95/64 p95 even many hours after food. (4:30am) All would normally be calm now on my night meds. But the body is in chaos from the fever.<br /><br />March 31st: huge pressure drop to complicate things. Fever persisted, high late at night. Cough only appears at night. It feels hard to get a full breath. Same aches and pains and malaise.<br /><br />April 1st: Even worse, unfortunately, due to various circumstances. Fever, cough, and unbelievable full body pain. Grip even worse. So much aching and throbbing literally from head to toe. Absolutely collapsing in pathetic cries of pain.<br /><br />The question is if the fever is a cause or a symptom of this flare. Is there some infection I am fighting? Or is there no infection, and this is just an immune freak out? I have been more fatigued and actually falling asleep easier (often before I go to bed), which is highly unusual for me.<br /><br />This reminds me very much of the time in 2017 when I thought I got a bug bite on my leg. Weird looking one. The doctor didn't want to speculate if it was a bite. Now, I know it looked like a plaque. With it came fever and extreme sacrum pain. Another crying car ride. Probably an early flare in this disease process. Very similar pattern. But again, was an infection driving symptoms, or is the fever part of the symptoms of an immunological flare? Unfortunately, I also have a history of fevers of unknown origin in the last several years, though I think this is my first time since 2020. I've never had a Covid scare. I really am starting to doubt an actual infection.<br /><br />I have had a plaque here and there over the years that I've documented with photos. I also have had a milder version of knee swelling for almost a decade, necessitating constant compression. But I was still associating it with EDS and the wear and tear of very blatant tibiofibular instability that I've always had. This new knee swelling happened over the course of two days, and the compression is still essential, but can only contain it so much. It is all around and within the knee joints now.<br /><br />I have always gotten very quiet with high pain levels until now. These various pains cause me to cry out suddenly when I move or grip or step wrong. Very sharp and sudden pains. I’m also less stoic and more prone to random crying spells. For example, sensory overload used to make me zone out, but now I may burst into tears. Frustration at dropping something I won’t be able to retrieve can also cause me to fall apart. I truly don’t feel like myself. I hate this version of me. I don't know how to talk to people, because no one wants to hear that things are yet again even worse. And I'm not really capable of talking about it. Thus the writing.<br /><br /><br />This deterioration is not sustainable, as I now need help with activities of daily living. Getting dressed and moving items from room to room is difficult. We have brought in toilet rails, sofa rails, a cane, and a walker. But I cannot use the mobility aids with my hands like this. New salt grinder, new pill bottles, shoe horns. Cannot turn a doorknob with right hand. Can barely do it with left hand, which is worsening, probably from over-compensating for my right hand. Switched to using an electric toothbrush with left hand. But I'm even having trouble opening food storage containers (which I need do many times a day) and chapstick, opening windows to ventilate, and opening my water bottle to refill it. Obviously, trying to write is almost futile. My mom has very kindly volunteered to help me start my days, but she shouldn't have to. Instead of hanging out and de-stressing together, I just need help. And I can see that my misery is contagious. Since I cannot contribute to society in any meaningful way, all I have aimed for in years is to try to be a positive force for those in my daily life. That the good outweighs the bad. It's all I can hope for in life. But I am not able to achieve that right now.<br /><br /><br />These are just the new symptoms. They haven’t replaced anything. It’s all cumulative. Life feels impossible. Very overwhelmed. No intentions of going in the car again, certainly not until this fever/flare is over, if that's even possible. But then I would be too scared of flaring again if it does calm down. I feel a deep depression and a heavy dread and hopelessness. I am in emotional survival mode, unable to think beyond the needs of today. At times, I have focused on the need for an escape hatch by any means necessary. So better to avoid thinking about anything beyond the survival of today.<br /><br /><br />As usual, there are multiple contributors to this progression, including environmental stressors, emotional stressors, and perhaps an infectious stressor. It seems clear this has been an encroaching autoimmune condition that has never before presented with such clearcut symptoms. Many doctors have assumed there was some autoimmune process they just hadn’t yet identified, in addition to the already identified mast cell disease. The plaques of psoriasis are hard to deny, along with the practically overnight filling of my knees with fluid and extreme pain/stiffness. It all points toward psoriatic arthritis. (Although that doesn’t explain the muscular component) But knowing that isn't particularly useful information when I still can't tolerate leaving home or trying new treatments. I will be facing this at home, on my own, without any medical help, just like I always have to. Medicine has a solid track record of making my life even more impossible. And it goes without saying by now, but in-home care is also not made accessible for people like me. My body overreacts to the slightest assault. I cannot imagine how to go forward. So I won't imagine.</span><br /></div>Carolyn Medranohttp://www.blogger.com/profile/02811093427920453122noreply@blogger.comtag:blogger.com,1999:blog-833972720679789479.post-43700633492499258182023-01-27T02:45:00.005-06:002023-01-27T04:04:04.620-06:00Sinking Ship<p>As usual, I'm writing because I feel desperate. I can't well summarize all that's happened since I last wrote. I'm just sharing the latest preoccupations that have been bothering me.</p><p>Feeling the overwhelm and impossibility of life and future. I have fragments of a life I would like to keep, but I don't know how to hold onto it. It keeps slipping away from me, getting harder and harder to hold onto. My home and quality of life are a sinking ship.</p><p>Practical issues:</p><p>-The upstairs scent that started January 13 and seeps in strongest into the bedroom. As soon as I had figured out the damage the heat was doing to me, there was barely a break before this issue arose. The air purifier doesn't seem to be sufficient, even in the bedroom (smaller airspace to control). The scent is so strong in there that it builds up over time, even with my best purifier. All of this leading to needing to open the windows often. But the outdoor air is often not safe and is way too cold. But I have no other option when I'm trapped with that scent. I no longer have a safe bedroom, my one safe place in the world, contributing to the ever-growing sense of unsafety in my world. I was down to one safe room, and now I don't have that.</p><p>-My bedroom is the only reason I survived the summer. My escape from all the seeping scents. That escape no longer exists due to whatever new scent is being used, presumably coming from above, since it shares no walls with any neighbors, making it more insulated. I cannot survive a summer without the safety in that room. That means that this spring should be my last here in this home.</p><p>-The living room air quality is now more tolerable much of the time in the winter, but very difficult to heat with space heaters. The space heaters are overwhelming our electric system, contributing even more to the sinking ship feeling. When the living room fuse blows, I can't fix it myself, leaving me without power and helpless. I can't warm my space. I can't turn on lights. I can't run the microwave/tv/dehumidifier along with the heaters and purifier. And this is all before bringing in the bigger purifier that I am still waiting on. That will use more power. I can only hope that it will allow me to open the windows less, and then I will just give up on heat. But that scent is so much to overcome without ventilation.</p><p>-Access to fresh air brings me back to life, brings me calm, brings me peace, brings me energy, brings me coherence, lessens my pain. It proves to me that buried underneath everything, I'm still me in here. But it is not available most of the time and so rarely fresh enough.</p><p>-CVS Refill BS-- Causing me so much unnecessary stress. Not even worth sharing in detail. Just absolutely inept people doing their job poorly and making my life so much harder.</p><p>-Glasses prescription BS-- I will be going back into the building that harmed me so badly last year. I cannot imagine how I will make myself do it or if I even should. But I feel like I see worse all the time. But how long will it even be before my vision changes again? How long will these glasses last? I've already waited almost a year since the first vision change. When will the left eye change? And how will I go about dealing with that?</p><p>-The shower leak is an ongoing and progressive issue. The moldy smell after showers keeps getting stronger. I am not sure how much longer I'll be able to use this shower. I already don't go in there more than I have to. I brush my teeth in the kitchen to avoid time in the bathroom. The mold issue is surely contributing to my progression, although fixing the plumbing leak will not undo the spreading mold damage in there. More sinking ship feeling.</p><p>-I will sometime get my computer repair done. I don't want to send my PC away and risk having it coming back scented. But it will get done.</p><p>-There is the ACT (Acceptance and Commitment Therapy) clinical trial, although at this point, therapy is feeling more like a luxury than a necessity. I'm already accepting a whole lot of shit about my situation. I'm not sure I have time and energy to devote toward accepting it "better."</p><p><br /></p><p>My body is part of the sinking ship as well. Degeneration on all sides. My back pain that was made so much worse by a simple exercise is one of the latest examples of this. And that back pain is a result of my fusion causing me to overuse lower parts of my spine, making it unstable. And since then, I've had a drastic change in my knees. Something has gone wrong. They are very difficult to bend past a certain point, and kneeling is no longer possible, but neither is crouching. Getting up off the floor is getting harder.</p><p>My body/brain reaction to using the heat for those 7 weeks was a shocking realization. Maybe there is some degree of a gas leak, or maybe I'll never tolerate gas heating. I can never go back to that state though. I cannot go back to the horror of that type of neurologic episode if it can be avoided in any way. But the reality is, any number of things can put me back there. Any number of triggers could cause that type of state. I can't avoid most things in this world, because I have so little control.</p><p>The problem with my rectum also feels like a devastating progression. Being unable to pass stool without applying substantial external pressure, I can feel how stretched out it is. Just like my stretched-out bladder, this is a progressive problem.</p><p>The migraine being in my teeth/jaw causing problems eating is just another impossible-feeling problem, although my sense is that it will keep moving around. But this pain came with the upstairs scent, which is out of my control and will continue affecting me to some degree for the foreseeable future.</p><p><br /></p><p>All of this contributing to my current obsession with the analogy of a sinking ship. It seems that a change in housing is the only path forward, but with my reactivity to nearly all humans, fragrance, food smells, heating systems, and building materials (paint/varnish/anything newly renovated) makes this feel completely out of my grasp. But if I cannot achieve it, it seems that that would be my doom. I do not see the path forward. I cannot even fathom how to have smaller repairs done around here, much less face the outside world of all uncontrolled variables. I don't see a way out, and I'm going to drown.</p><p><br /></p><p>Then, I have my go-to devastating fears and pains that pile up in me and constantly weigh on me.</p><p>-Grieving my Wilma. Being without her and her kind of company for the rest of my life. It still stabs me when I think about it.</p><p>-Grieving Grandma. I will never stop missing her.</p><p>-Fear of intolerable pain with no pain management. I already get close to this quite often.</p><p>-Fear of being trapped in the migraine with brainstem aura and disordered consciousness state without being able to eliminate the cause, like I did when I discovered the heating problem. That is not a livable state. That is a degenerative state.</p><p>-Fear of untreatable conditions with no preventive care or treatment possible. What happens when I get an ulcer or a kidney stone or a UTI or whatever it may be? Any infection. My tiny circle protects me, but they can't control everything either. My body becomes intolerable when I even catch a cold.</p><p>-Loss of mobility and cognition</p><p>-The world feeling very hostile to me, since my environment attacks me constantly as well as the people in it causing me harm.</p><p>-Having no safe space but with the impossibility of finding a safer space.</p><p>-Mom aging is the ultimate doom. Aging is fine, but losing her one day is not survivable.</p><p>-I strongly believe that the time will come that euthanasia is my only option, but I don't believe I will have access to it when I need it. And that time feels closer and closer every day.</p><p><br /></p><p>How am I to go on? I'm cold. I'm scared. I'm beyond tired. I'm trapped. Mostly, I survive one problem at a time, but there's never only one problem. There's always all of these problems, all inescapable. Trapped in this apartment and this body and this life. This sinking ship.</p>Carolyn Medranohttp://www.blogger.com/profile/02811093427920453122noreply@blogger.comtag:blogger.com,1999:blog-833972720679789479.post-54228806292738742592022-07-26T02:01:00.010-05:002022-07-27T03:08:15.329-05:00Summer 2022: The heat, The doctor's office, The Asphalt, The Pain<p>For the last 14 months, I've been diligently avoiding thinking about my illness by devoting all my energy to: 1) maintaining my strict daily routine, and 2) studying Spanish, reading about Spanish, listening to Spanish, taking classes in Spanish, literally just thinking about Spanish most of the time. I've had some moments where I got pretty obsessive, but for the most part, it's been a healthy outlet and distraction. This has not impacted my physical health, but it's been good for my mental health, overall. A caveat is that I have mentally and emotionally retreated into a shell in a lot of ways. I don't follow the news. I've had periods where I'm not using social media. And I'm even worse than usual about maintaining my real-life relationships. I also haven't been blogging or even keeping track of anything about my health. The exception is some trial and error of a few different foods. But I didn't take any notes, so my memory doesn't really allow me to report how it all went. What I know is that late winter and early spring has become a positive time of year for my health, so that is when I was able to add a few foods. I put on a few pounds. Got out of the crisis weight zone, barely. I also reached a point of truly being able to appreciate little moments of peace and ease. This really peaked with an outdoor visit with some family members I haven't seen in years. I was masked. I didn't get close. But I knew to truly live in the moment and let myself be happy about it. And I was. I know how few and far between the victories are. And I knew that improvement is fleeting.</p><p>And it was. The warmth of summer and necessity of AC brought back all the usual problems. I won't recount them all. The general effect is one of permeating fragrance invading my home and a huge uptick in migraine and all other symptoms. This has led to a return to spending nearly all my time sealed in the bedroom, only being able to air out during the overnight hours, when it's coolest. Some nights don't cool down, so I don't get to air out or cool down the bedroom at all. It gets extremely stuffy, hot, humid, and musty in my little sauna prison. But as sick as the heat and humidity make me, the fragrance that fills the rest of our apartment causes monumentally more suffering. Mind-blowing levels of pain in my face and head. So I am better off sealed up tightly in my bedroom most of the time. Nonetheless, the ability to blast the AC and the fan at night to freshen and cool the air is critical to my survival. (Insert foreboding omen here...)</p><p>After recognizing this seasonal pattern, I have dreaded summers. Back in May, right before our first heat wave, I remember apologizing in advance to my mom and my husband for what was about to happen, hoping that somehow I'd used my time with them well enough, added enough positivity to their worlds, to make up for the misery I would be bringing, knowing that the generally pleasant and calm and loving version of me would be leaving. Just hoping that I had done enough to justify my existence in the coming months. And also knowing that I may never get back to that state. Seeing how it's gone so far, I don't believe my existence has been justified, I believe I gave all I had to be a positive force in their lives, but these negatives are just too high.</p><p>I had gone quite a while without passing out. But the migraine with brainstem aura returned. John Hopkins describes my general migraine state well, ever since I stopped tolerating treatment in 2016: "However, in some patients, the migraine is particularly severe and long-lasting — and may even become chronic, occurring continuously for weeks, months or even years. If improperly managed or left untreated, intermittent migraines may essentially transform into a chronic daily headache, with continuous and smoldering symptoms that periodically erupt into a "full-blown" migraine. This condition is extremely difficult to treat." I get all flavors of migraines, with an ongoing baseline level of migraine. I get hemiplegic migraines. I get vestibular migraines. I get visual auras. I get brainstem auras. I have various migraines coming and going at all times. The brainstem auras (previously called basilar migraines) cause me to lose consciousness (up to 1-2 hours) or have prolonged presyncope (reduced consciousness--often on the verge of passing out). Followed by days of massive pain, of course. The baseline migraine state has kept me in a permanent, waxing and waning fog. Some level of cognitive impairment is constant, as is a level of pain. There is also a dulling of emotions nearly all the time. I am not who I once was. With the exception of one day, I have been stoic even while writing these words. Blank-faced. Maybe a few tears crossing an empty face. So if these sound like the words of an anxious and desperate person, that's not quite right. I actually feel very blunted emotions. And my inattentive mind doesn't dwell on anything for long.</p><p>Along with the worsening due to the heat, of course, I lost some foods and some much-needed pounds. But I'm also not doing great processing any of the food that I take in. I had foods I wanted to trial, but all thoughts of trials or improvement are eliminated for this year.</p><p>Anyway, I'm actually writing after all this time because for the last 4 weeks, I've been going through an exceptional spike in symptoms, enough that it encouraged me to take note of my symptoms again. These are the notes written in my phone. I have simply copied and pasted. This is not refined or censored. It felt like I needed to get it all out. To have some record of what I was going through. Maybe to warn my future self away from ever forgetting this level of hell. Maybe just a place to put all the pain I have been in. Again, these are unfiltered thoughts. I'm sure a lot of it sounds self-pitying and repetitive. But honestly, I play nice and smile and put up a brave front and all that shit almost every day of my life. I say, "Bien, bien. ¿Y tú?" I suppress and distract nearly all of the time. But this was not a time to suppress, since I simply was not capable. It had to be expressed. This will be very repetitive because reactions are PROLONGED. I decided the pain decreases about 2% each day after peaking around day 3 or 4 after a level 10. I wrote a little bit every day for three weeks, although I lost track of time.. My brain goes through the same thoughts each and every day to varying degrees. It's nothing new. But just cause I'm used to carrying it doesn't mean that it's not heavy or that I can always carry it alone and with a smile on my face. Basically, I fake it until I can't.</p><p>June 28, 2022</p><p>I went to a doctor's office to look into my vision, which changed drastically overnight in one eye. I have read that sudden reversal of lifelong myopia should be investigated. And at the very least, having the appropriate vision correction might lesson my continuous migraine flare ups just a little, by reducing eye strain. I also have the chronic dry eye, frequent corneal abrasions, a permanent stye, and swelling eyelids. </p><p>Who the hell did I think I was? Why the hell did I think I was entitled to a new pair of glasses? What made me think the world would allow this to happen? Lest I had forgotten that I am worthless, the world was happy to remind me. You are nothing. You deserve nothing. And you will be treated like the piece of shit that the world believes you to be. Learn your lesson. Don't think for one second that this world is for you. You don't belong. You are not welcome. You are trash. Thanks, world, for this reminder.</p><p><br /></p><p>June 28</p><p>3:35</p><p>3-5 minute fragrance exposure wearing paint respirator for chemical odors. Had to leave the building before I could even check in for my appointment. Immediate brain and face pain to a perceived 10. Hysterical crying and screaming and death wishes and rage.</p><p>4:45 Extreme fatigue with persistent brain and face pain (redefining level 10 pain). Screaming loud tinnitus. Vertigo.</p><p>5:00 Urethra starting to burn. Muscles burning and aching throughout legs. All painful areas amplified (especially knees/feet/thighs/shoulders). Extreme muscle tension. Waves of goosebumps. Loss of balance. Loss of appetite. Burning eyes. Burning mouth. Extreme lethargy. Out of breath with a few words. Nausea. Unable to urinate more than a few drops with a full bladder. Painfully swollen urethra. Pleurisy. Costochondritis. Ear canals swelling. Abdominal swelling. Itching, crawling skin. Temperature dysregulation: hot face/cold legs, allodynia: skin hurts.</p><p>June 29 Head/face pain 8. Heart pounding after eating. Yawning spell. Extreme fatigue. Pre-syncope and brief syncopal episode. Vulva burning. Mouth burning. Air outside the bedroom triggering pain spike worse than usual. Much more sensitive. Swollen eyelids.</p><p>July 1 Head/face pain 6-8 with spikes to 8-9. Ice pick pains in occipital area. Tooth/jaw pain. Tooth sensitivity in specific areas.</p><p>.July 3 continued ice pick pain in occipital and jaw/teeth. Mostly unchanged. Burning nerve pain in feet. Bladder pain ongoing but lessened. Eyelids swelling a little less. Overall stuporous state, but able to come out of it at times.</p><p>July 4 Histamine symptoms. Burning mouth and feet. Swollen eyes. Stupor. Continued head and face pain and pressure. Lowered tolerance for being near people.</p><p>July 7 Severe neck spasms in sleep leading to full body vibration. Neck muscles clenched so tightly while sleeping that the muscles began convulsing. I got up to find the source of the vibration before realizing I could barely hold my head up from the muscle fatigue. Muscles continued to clench as I tried to get back to sleep. Had difficulty holding my head up the whole day from muscle exhaustion. Day 10 of severe pain. Confined to dark bed still.</p><p>Hopeless Ruminations</p><p>On the way home from the doctor's office, amidst the hysterical cries, I couldn't help but notice the truly shocking difference. Seeing people walking around inside that building with no ill effects. Then watching people just out for a walk on a nice summer day on our way home. Then seeing my family gathering to welcome a new family member to the world over Zoom that evening, a world that I should be a part of, but never will be. Nephews that will never know me. All while I am forced to continue suffering through this tortured and doomed existence with no purpose and no future, unable to experience joy or pleasure, while suffering through the worst agony I can imagine repeatedly for the rest of my days and miss out on anything that could give my life value. There could not be enough to justify this existence. There exists nothing in the world that could be worth this specific type of suffering, in both nature and scope. There will only be more suffering and loss. People are able to get through the grief of life and loss because something new can come into their life. Anything. New people. New activities. Children. Pets. You fill that grief hole with something new. But I will not get new things. I have no way to cope and move on from grief. My world just gets smaller and sadder and lonelier.</p><p>I live in a different world. I'm like an alien, my mutations making me incompatible with life on this planet among this foreign species. My experience has so little to do with the human experience of other people. The type of suffering so vastly different than anything most people could possibly ever know or even imagine. (I said different, not worse--not trying to claim a prize here). I would truly settle and be satisfied if I could just go back to being a regular chronically ill person. The kind whose symptoms frequently interfere with plans. The kind who is forced to rest after any exertion. The kind who has access to various types of treatment for pain or symptoms. The kind that can have a dog as a companion or even a helper--to love and be loved. The kind that can take a relaxing trip to literally anywhere to unwind. The kind that can experience some pleasure from a special treat in the form of the ice cream shop or massage therapy. The kind that can occasionally dress up a bit nicer and enjoy a tame and brief night out, even if they suffer for it later. The kind that occasionally can be in the presence of those that still care about them after all these years--to have the comfort of the company of loved ones. The type that is frequently still disbelieved when recounting their own lived experience. The kind that has too many doctors' appointments. The kind that has to just keep trying until they find the right combination of treatments. The kind that has the security of safe housing as well as the ability to leave home. The kind that can just get a new pair of glasses when they've had a sudden change in vision. I don't even relate to the chronic illness community anymore, except in an almost nostalgic way. This experience is vastly different than anything I could have imagined, anything my decades of illness could have prepared me for. I knew how to do that other kind of chronic illness. I envy that experience that used to plague me. Now this is merely an endurance challenge to the death. There is no way to avoid thinking about how you might get out of this torment, since it can't happen soon enough. I can only hope that my suffering will be cut short somehow.</p><p>There is the injury of no one giving a shit. That other disabilities must be accommodated, but not even medical care is made accessible for my type of brokenness. Nothing is accessible. Family and friends who seem to care are not accessible. It is basically impossible to believe that your existence has any value when the world actually attacks you, targets you, and the vast, vast majority of people will never lift a finger to change this injustice, to try to undo your erasure from the world. How you wish it were as simple as being erased rather than having to continue living this wretched, invisible existence of agony.</p><p>You would think that I would have learned this lesson by now, the lesson that the outside world can only ever hurt me and break me. Each time, I swear that I have finally learned. I really hope that I've actually learned it this time. That there is no safe place for me. That risks are to be avoided at ALL costs. That nothing could matter more than avoiding this agony. That the pain of daily life inside that seems so horrendous cannot approach the magnitude of the punishing pain brought on by the world out there, where people are oblivious to the abuses they are carrying out and the lasting damage they wreak. That I am invisible. That I do not matter one iota. That the amount of pain I am in each day means nothing. That it will always eventually come back to this. This scene of me crying silent tears inside a raging body all alone. Crying out to the empty skies for relief, or release. Please release me, oh great void.</p><p>Why can't natural selection do its thing on me already? I suppose it has by preventing reproduction, but I shouldn't really have lived this long if nature had taken its course. Medical intervention is not always desirable. The harm it can bring is so much larger than any relief when you are not the picture of a patient that they recognize. Again, this makes me an alien. I am painfully aware that most interventions I have tried have done more good than harm for most people. But thanks for the reminder that I am an unfortunate one. One that is left alone to suffer through my days.</p><p>To have your massive suffering be so unfathomably long and so meaningless just destroys you. I'm not who I once was. That person has been broken down and reshaped into a more and more deformed version of anything resembling me. I'm being attacked all the time. I live in this torture chamber.</p><p>This also cannot be ignored as a sign of all of the resources I will not have access to in the future. The future is not actually possible without access to some type of assistance. There are times in life when you have to go inside a building. You have to have some kind of medical care. Your body might need help recovering from an infection or an injury. But this experience proves yet again that I must live not only with uncertainty, but more with the certainty that care and assistance will not be available to me when it is needed most. After all this, I feel like I can get through damn near anything without any kind of intervention, as I have been doing for years, but we know that's not true. Yes, it's surprising that I've made it this long. But I am not fooled. I've witnessed and felt every moment of this descent. I've felt the worsening and the progression every step of the way.</p><p>There are also implications for the impossible home search, which I had somehow started thinking was an actual possibility, albeit a far-fetched, needle-in-a-haystack type of situation. All of that is long gone now. All hope having been ripped away again, the tiny sliver of it that there was.</p><p>Also, knowing that a pain spike so big leads to extended periods of time of severe pain. It is horrific in the moment, both because of the horrors of that moment's pain but also the ongoing pain that it brings. The inflammatory cascade that I dread so much. The exact one that other patients can simply raise their dose for, or do a short course of steroids to get back on track. Without anything to assist and deescalate the situation, the suffering is so greatly prolonged. And with nothing to dampen the pain and symptoms and inflammation. I simply cannot imagine and refuse to face living life like this.</p><p>And that is how I got to the point I did this last year. Spending every lucid moment with a focused distraction. Giving up any hope of productivity or contribution to the world. Merely seeking for ways the world can distract me from my pain moment by moment. Distract me from these thoughts of the future, of the present, even of the past. Save me from myself. But when the pain is this high, distraction is nearly impossible. Because you have to be able to focus and care about something in order to be distracted by it. So now I am stuck here to ruminate.</p><p>Pain levels are so meaningless. The number of times I have reached a perceived 10 only to then experience worse is uncountable. I used to just call 10 a 7 based on this knowledge, but I refuse. If it feels like it can't get any worse in the moment, it's a 10. It's just that the body is capable of ever-increasing levels of pain. There is no limit.</p><p>Waking up vibrating seems to be my body's new trick introduced by this occurrence. It wakes me up out of deep sleep. It seems to start in my neck but then eventually, I sense that the whole bed is shaking. But it's just me. If I sit up, it stops.</p><p>Also, I'm currently typing at 5:15 AM. Finally being able to leave the bedroom and cool down and ventilate the apartment between 2:00 and 5:00 AM has cemented even further my status as a nocturnal, vampiric creature. I see every sunrise before going to sleep.</p><p>Then, after all of this, my body is approaching some kind of new, horrible normal. I'm accustomed to the requirements of the day based on temperature. I hate it, but I'm learning what is required of me to avoid the worst suffering, and sometimes I can.</p><p><br /></p><p><br /></p><p><br /></p><p>This ends the notes on my phone. The rest are reflections of tonight.</p><p>I'm in much worse shape than I was before the failed attempt to get appropriate glasses. But I've been adjusting to the higher pain levels and accepting the routine of finally airing out and cooling down overnight. But lest I get too comfortable, I've received devastating news. The news I've been dreading since this time 4 years ago. The news that they will be repaving or resealing our parking lot, right outside my window. This ground treatment 4 years ago started the cascade into starvation-inducing loss of tolerance and suicidal levels of pain. And it is just two days away.</p><p>Last time, I had an escape hatch. I was still able to stay at my mom's house. I had to check my blog to find out when this happened. What I wrote at the time:</p><p>"I struggled so much when they resurfaced our parking lot. I couldn't be home at all. I became completely manic after brief exposure." WTH. Brief exposure made me manic? So what is 24/7 exposure going to do? I know I won't be able to air out at night or open the bedroom door or use the AC. I am trying to figure out how to protect myself within the bedroom. But I am not sure how I will survive with no escape. The heat alone would devastate me. Cause escalations and progressions. It has been devastating for me. But there will also be the bombardment of fumes from whatever horrible shit they put on the asphalt.</p><p>I've been following the rules of anxiety and keeping the knowledge that this day would come tucked far away in the back of my head. And now, it's here. There is always further to fall, and suffering has no limit. So I am attempting to brace myself for the onslaught of being trapped in my sauna prison 24/7, presumably with a level of inescapable intrusion of fumes, and with no overnight freedom. This is not a short process. The treatment still smells very strong a year later on any hot day. All blacktop does, really. These fumes do not pass in days or weeks or even months. My only relief will be when the weather cools off. But by then, I will already be down the next downward spiral.</p><p>So it was the heat, and then it was the doctor's office, and now it's the asphalt.</p><p>I say it every damn time, but if it's gonna knock me down again, it'd better finish the job. If only we allowed people a merciful way out of a life of hell. I know I'm trash. I know. I'm a speck on a pebble in the shoe of life. Why would I think I mattered? But here it is. It is upon me. I don't know how to face it. I can't imagine being able to distract. My capacity has already shrunken so much from the 3 minute exposure at the doctor's office. My ability to engage with my needed distraction (Spanish class and study) worn away by pain and stupor.</p><p>I am afraid. I'm writing because I'm afraid. I have had another two friends pass away from conditions related to their mast cell diseases, made worse by their chemical exposures and the inaccessibility of medical care. There are others like me. I am not alone, but in reality, though I know of them, all of us with this severe level of chemical reactivity are alone. We are mostly unknown. In many ways, we slip away without the world noticing. There should be somewhere safe in this world. There should be help available to those who suffer in this way. But there isn't. There just isn't.</p><p>Some part of me wonders, when I read through the last posts and last messages I had with my friends, which will be my last messages? What will be the thing that finally pushed me over the edge? Do I actually want it to come soon, the way I truly believe in the weeks after an exposure? Or do I wish for this existence to endure? All I know for sure is that those who care the most for me do not deserve to lose me, to grieve me. But for the record, I do not consent to medical intervention without my knowledge. I don't agree to be brought to a hospital if I am unconscious. I only accept medical care on my own terms, which is currently none.</p><p>I hate to post all of this after more than a year of silence and disconnect. But at the same time, I feel compelled. A silent scream into the nothingness. I don't even know the point. I don't know what good it does to write this. If I can't put anything positive into the world, maybe I shouldn't be allowed to put in anything negative either. I don't know who I want to read this. I don't know how I would benefit from expressing this. But maybe it's just for the record. 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text-align: center;"><br /></div><p><br /></p>Carolyn Medranohttp://www.blogger.com/profile/02811093427920453122noreply@blogger.comtag:blogger.com,1999:blog-833972720679789479.post-63423228104871604082021-03-05T04:46:00.003-06:002021-03-05T04:46:52.886-06:00Doom<p>I'm hoping to make this a quick entry, since it's 3 in the morning. My days and nights are pretty fully reversed now. I'm typically in bed from 5:00 AM until 2:00 PM. Always trying to do better, but being able to get quality sleep while I'm there is what really matters.</p><p>I'm still having the awful acid symptoms forcing me to stay upright during the overnight hours. And this is even after decreasing my food intake (and losing a few hard-won pounds). And I still have the final wean off of the Omeprazole to come. With such severe acid, I just haven't been able to get myself to start the next wean. I don't know if my body needs more time, or I just have to accept the erosion of my esophagus. Overnight, I'm also just awake. It's when my body wants to be awake. At least for now, I'm often sleeping pretty well. Although lately, so many things have been trying to steal my calm.</p><p>The winter has had its challenges, but honestly, it's been such a huge relief to have a continued break from the laundry and cooking fumes that tortured me for half of last year. And the cooler temperature is hard on my feet with Raynaud's, and it can be hard on my body pain, but it is so amazing for keeping all fumes from seeping into our apartment. It's truly been amazing. I don't know how much of it is that the neighboring apartment is still empty, from what I can tell.</p><p>I have struggled with body pain a lot, primarily my feet and knees. My mobility is so greatly reduced. Pain becomes so severe after such a short time on my feet, and it takes a long time to recover. Sometimes the pain is enough to keep me up at night. There is really no way to alleviate it. Only force me to spend even less time mobile.</p><p>The only reason I can be on my feet at all is a magical combination of a particular brand of compressive knee sleeve + my expensive custom insoles + my tolerable brand of sneakers. Of course, with such particular needs, there's bound to be a problem. So, Futuro discontinued my knee sleeve JUST in the size extra small, which is the only one that comes close to providing enough compression to my skeletal chicken legs. I have seriously purchased at least 40 of these knee sleeves over the last decade. I can't use neoprene, so it's been a challenge to find anything that comes even close. I'm still using the ones that I've got, but they are starting to wear out, and I won't be able to replace them.</p><p>On top of that, my particular sneakers (Saucony Cohesion 10) have been replaced with newer models that do not support my feet the same way. I have seriously stocked up (and continue to stock up) on these shoes. I have spent hundreds of dollars getting myself a decent supply, so at least this problem can be deferred for another time. I've been wearing only these shoes for every step I take for so many years. They also wear out fairly quickly. I guess they are only really supportive enough when they are new, since I take very few steps in a day. So I replace them pretty often. The newer models (Cohesion 11, 12, and 13) cause a huge increase in foot pain, to the point that I would require an indoor wheelchair (and accessible housing) without them.</p><p>So, I have had some troubles, but still relative peace. My body just needs to have a temper tantrum about something. Foot and knee pain are not new for me, but this new progression in severity seems to be the current temper tantrum (outside of the usual, of course).</p><p>So all of that feels pretty foreboding. Just knowing my mobility is reduced so much. I've had a wheelchair since I was 19, but I've never used it inside my home. I've always had at least that level of mobility.</p><p>I have had the usual challenges accessing my body's very particular food and medicine needs. Trader Joe's has not been reliably stocking my quinoa. And Costco seems to forget every month to order the specific manufacturer that my doctor orders for me for at least one of my prescriptions. Although I am still so grateful to them for being the only pharmacy around willing to special order these brands. They could stop at any time, and I would be completely screwed. I'm so close to being off meds, but I still completely depend on them for sleep. And unfortunately, like every other freaking thing, my body is extremely particular. I have found the one tolerated brand of each med, and I cannot tolerate any changes.</p><p>However, I have made some small gains...if you can call it that...with food. I think I am tolerating oat milk (baked) better than almond milk. It's been an ongoing experiment, so I can update more soon. The other food I was able to eat some of without much repercussion was artichoke hearts. I don't enjoy the frozen/microwaved/unseasoned flavor. I've actually never eaten them before. But it is something different I can eat in small amounts some days. I still really want to try the puffed millet cereal as well. Although it doesn't seem I can increase the amount that I eat, only perhaps the variety.</p><p>BUT...all of this freedom to do tiny experiments will disappear shortly. Sorry for some repetition here. The rest of this entry is a recent 3 AM diary entry, detailing all of my ongoing worries:</p><p>"The melting of the snow spells the beginning of my doom. Each drip brings me closer. The return of invading fumes every day--no safety in or out. Add to that the upcoming "return to normal" for the rest of the world as vaccinations thankfully become available. My world will get much darker and lonelier again. I have been so lucky to have my husband around for this last year. I treasure his presence even when we are off in our own worlds. His companionship day to day now feels like a lifeline. How did I ever manage without it? He is away on a weekend getaway right now, so I am getting the reminder of how desolate that extra level of isolation feels.</p><p>But the spring weather brings with it more migraines and also my doom. Nowhere to run. Safety will slip away. No more regaining foods or weight. No more trials--you can't make sense of them when you are under siege constantly. Any sense of security will disappear. The world more treacherous. I cannot bear it again. It tried to kill me before. If I have to go through it again, it better succeed this time.</p><p>So, we are starting the seemingly insurmountable challenge of finding a safe apartment. The search brings new possibility but also new risks...new exposures, new tests of tolerance, so many more opportunities for disappointment and feeling even more permanently trapped. I feel these days of relative safety slipping away. I have not put myself in compromising situations for a long time. I haven't been on a car ride in over a year. I simply haven't left the property. I've barely even stepped outside, to be honest.</p><p>I have to remember that it not only could always get worse, it always has gotten worse. So whether I stay in this apartment through this summer or I attempt to move to a new place, either situation could lead to further progression. There is no good answer. There is no perfect solution. It feels inevitable that a new tipping point is coming. A new time of crisis that pushes me further down this road of suffering. So I just have to be prepared to accept worse and hope that I can learn to tolerate it, whatever the situation. But I also somehow have to protect myself from getting trapped in a situation without the hope of ever finding a new calm. (Like if I had been forced to live in the apartment with the varnish fumes back in 2014. That day of anaphylaxis was the beginning of my constant trigeminal pain and the escalation of my sensitivities.) I cannot get to a place where I truly have nowhere to go that is even safe some of the time. At least I have that here, and part of me believes that I should just accept that as good enough. I don't want this to be a situation where I took for granted what I used to have and then lost it, as I have done so many times before. I cannot take this home of part-time safety for granted.</p><p>How on earth will I accept signing a lease on a new apartment if it has fragrance in it? How am I supposed to know if a place could be made safe with cleaning and the hydroxyl generator and air purifying and maybe some type of low-chem sealers? It will be such a massive investment of money and energy and time, especially for Gustavo. I just can't put him through that and end up with nothing. I am scared. Scared of making the wrong choice. My well-being, my sanity, my shelter, and quite possibly my life could depend on this.</p><p>Every mention of moving or the leasing office or even of the spring weather or vaccines brings the feeling of dread with it.</p><p>There is also so much dread around the worsening pain in my feet and knees. Standing and walking are becoming exquisitely painful. Never this bad in my life. I don't know how to stay mobile, even just to get around a small apartment. I can't lose my mobility fully. Small apartments are not wheelchair accessible (nor are most houses). And I would lose what little muscle I have left.</p><p>It is unnerving how the tiniest change can domino into disaster so easily. My body is so dependent on nothing upsetting the ridiculously delicate balance. A balancing act that I can't maintain. I can never appease this garbage body. And yet I have to devote all my energy into trying to do just that.</p><p>All of this is so foreboding. I have lost my lovely calm that I had so much of the last few months. It's all just building, stealing my peace."</p><p><br /></p><p>So, we do have an apartment we are planning to look at. The leasing office has not been nearly as accommodating or helpful as I had hoped. We have actually been left in a lurch at the moment about if we will even be visiting, but if we do, the first apartment to visit will be this week. I don't want to talk about it. I don't want to think about it. I certainly don't want to make another phone call about it! My request to visit the apartment before it is painted and cleaned did not go over well. And even if we do manage that, we still haven't convinced them not to paint and clean the very next day. There will be exactly a one-day window in which we would be allowed to visit after an apartment is vacated (if they decide to allow this at all). But I still have no idea how I will know if an apartment is able to be remediated or not. They are not able to tell us what products the former tenants used (plug-ins, spray fresheners, fabric softener, essential oil diffusers). Those are immediate disqualifiers for me. They cannot be washed away. This could be a verrrrrrry long search.</p><p>There are benefits to the apartment complex we are considering. They are LEED certified. Specifically, they have no shared ventilation between units, and they have positive pressure filtration. Those are both very good for indoor air quality. But they can't overcome the stickiness of pro-fragrances (<a href="https://pubs.rsc.org/en/content/articlelanding/2014/ra/c4ra07728h#!divAbstract">https://pubs.rsc.org/en/content/articlelanding/2014/ra/c4ra07728h#!divAbstract</a>). Think Downy Unstoppables. And everything Glade. Febreze. Gain. These chemicals have been made to be extended release and remain for many months, usually years. They cannot simply be washed away or aired out. I know I've had to get rid of every piece of cloth I owned before going fragrance free. The fragrance simply doesn't wash out. And that is just fragrances! I have trouble with all new appliances and new furniture. Any repair done to the apartment introduces a new chemical onslaught. There are almost always safer product alternatives, but they are never used. There is so much you have zero control over in an apartment, including the previous tenants and the neighbors. They have the right to live their life and use all of these legal air quality hazards. They certainly have a right to cook in their own home. There is no way of knowing in a brief visit how much of a problem any of it will be.</p><p>Anywhere that is not this apartment on a good day is foreign air to my body. It will probably react to anything. I will certainly react to the car ride. I don't want to stir up my world when I like it how it is right now. Not being attacked from all sides constantly.</p><p>I just can't prepare. Only deal with it as it comes. And try to save the doom for another day. And actually go to sleep before sunrise tonight.</p><p>Thank you for reading this anxiety-driven blather. It's a lot. I just want things to stay the same, miserable as they often are. I am aware that this is as good as it gets for me at this stage in my life. I just want my husband's company and temperature control and no chemical onslaughts bringing misery. I want the chance to accomplish something beyond mere survival in a day. I just don't want anything to change. The way things are right now is what is keeping me safe. The doom is often at the back of my mind. It has come out a few times. I am hoping that by writing it down, I can think about it less and just enjoy the safer time while I have it. And I have been and will continue to enjoy every moment of less suffering.</p>Carolyn Medranohttp://www.blogger.com/profile/02811093427920453122noreply@blogger.comtag:blogger.com,1999:blog-833972720679789479.post-75416769733023939672021-01-09T01:44:00.005-06:002021-01-18T01:23:34.306-06:00Progressive<p>I haven't posted in almost 9 months, so there is no way to cover everything and also no way to keep this succinct. It's been a hell of a time.</p><p>I'm apologizing ahead of time for the huge mass of words that follows. (I actually cut out about half of the length to save for another post.)</p><p>I'm starting with the highlights of my symptom/reaction journal, which I am not super consistent about keeping. But it is helpful for tracking new triggers and to see the progression of everything.</p><p>I kind of lost track of last spring. I was dealing with the weather change and my new reaction to my birth control pill. I ended up having to stop taking the pill. This could have been a disaster, having uncontrolled hormones, but with my low body weight, I actually don't menstruate or have much in terms of hormones anymore. (This was news to me! I had no idea I had lost my period until I stopped taking the continuous birth control.) To be clear, I do not have anorexia. If you have video chatted with me, you know that I eat, usually multiple times, during every call. This is because I eat almost constantly every day. The range of what I eat is quite small, but there is no food intake restriction going on here and no calorie cutting. Nothing like that. None. The opposite actually. However, the ramifications of my low weight on my body are the same. So I found this interesting article on the impact of low body weight on your hormones. As expected, it's not a pretty picture. The osteoporosis is one of the biggest long term concerns since I already had that. Raised cortisol and problems with neurocognition are also concerning. The heart complications are worrisome too. Anyway, here's the articles I found about the medical complications of extreme low body weight:<br /></p><div style="text-align: left;"><a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4133106/">https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4133106/</a></div><div style="text-align: left;"><a href="https://www.ccjm.org/content/87/6/361">https://www.ccjm.org/content/87/6/361</a></div><div style="text-align: left;"><br /></div><div style="text-align: left;">And my BMI is below 15, so I do fit into the category of someone with extreme anorexia.</div><div style="text-align: left;"><br /></div><div style="text-align: left;">In addition, last spring began the time of massive disinfection and hand sanitizing. Most packages reek of disinfectant. Most pill bottles from the pharmacy stink of hand sanitizer. Even my potatoes have been touched by sanitized hands and brought the sickening smell of Lysol with them. So I have had a lot of run-ins with disinfectants, escalating my baseline level of reactivity.</div><p></p><p>My predictions about the warmer weather were quite correct, although I never could have imagined just how bad it got last summer.</p><p>In May and June, I was suffering from severe sinus drainage clogging my eustachian tube. Without an antihistamine to dry up all the excess mucus, there was no real solution. The only thing I found was that rinsing my sinuses and lying completely flat (no pillow) for at least 30 minutes could shift the fluid around enough to prevent the terrible ear aches and popped ear feeling. Unfortunately, there is not a lot of time in my day where I can lie flat without invoking horrendous reflux. So, that was a terrible issue I was dealing with. I tried raising my dose of Omeprazole, but the reflux actually became worse. There is a serious issue of over-correction possible when it comes to stomach acid. So, my only treatment was baking soda water to temporarily neutralize my gut at this time. That ended up becoming a handy trick I've had to lean on a lot. I do wonder if this could be more related to CSF (cranio-spinal fluid), since the clogged ear is a known problem associated with leaking, but there's no way to really know without specialized scans.</p><p>Then, I have a list of symptoms and new triggers from over the summer. I don't really know the order of all this nonsense though.</p><p>-The fragrance and cooking smells seeping in through our bathroom became intolerable with the heat of summer. We tried everything we could think of to prevent it, but whenever the laundry was run upstairs or cooking was happening next door, the smell filled our apartment. It would literally smell like a fast food restaurant throughout my apartment at times and a laundromat at other times. Symptoms I had were stupor, palpitations, agitation, crawling skin, migraines, trigeminal neuralgia, as well as new sensitivities developing. At least in June and July, I was able to open the window and use the AC aggressively to try to get the indoor air safer. It let in more allergens, too, but that's how I managed it at the time.</p><p>Then, August came, and everything became a nightmare. They sealcoated our parking lot and sprayed pesticides outside, so I could no longer tolerate our AC or the outdoor air. I was totally sealed in. So I put new filters in my air purifier, but unfortunately, the new filters had a chemical smell, and that was an immediate trigger. When I used the air purifier or the AC or opened the windows, I suffered from total insomnia and agitation along with massive pain in my head and face. So August and early September were honestly pure torture. No air conditioning. Extremely hot and humid inside. Scents filling the apartment. No way to air out the fumes. I had incessant high level migraines, facial pain, palpitations, sinus allergies, stupors, insomnia, and utter misery. In addition, I ended up stuck in a vestibular migraine for months. This included extreme sensitivity to sound and motion, causing vertigo, tinnitus, pain, body buzzing, and cognitive exhaustion. That vestibular migraine went throughout October as well, and honestly, has still not gone away to this day. I have multiple layers of migraines still, and they all wax and wane, usually from known triggers, including things like weather.</p><p>During that horrible time, I developed new sensitivities and failed some trials. I tried coconut milk in my biscuits since I began reacting to almond milk, but it was worse, despite being a pure ingredient coconut milk. It caused me tachycardia, shortness of breath, sudden fecal incontinence, and insomnia. I get the tachycardia and shortness of breath whenever I eat biscuits, but this was clearly worse, so I reverted back to the almond milk biscuits.</p><p>I also ended up with biscuits made with baking powder on accident once, and the reaction was very apparent to me. Baking powder (a miniscule amount) caused burning in my chest, agitation, hives, tachycardia, palpitations, and shortness of breath. I just felt really off. Yes, these reactions are getting boring and predictable to describe, but they are no less miserable to go through just because I've been through them a million times before.</p><p>I tried using canola oil instead of olive oil on the off-chance that I was reacting to salicylates in the olive oil. The canola oil caused severe lower intestinal cramping (not a usual symptom) with no GI symptoms, followed by heart pounding overnight with nightmares, sweats, and sudden wake ups. My burning mouth went away, but the trade off was too much.</p><p>I tried adding cauliflower as a new food. I added such a small amount but ended up with major bloating and loose stool.</p><p>I tried butternut squash, and while I can't remember the whole reaction, I think burning and insomnia were involved.</p><p>Then, my reactions to my safest version of my biscuits got so intensified in the heat. And I eat my biscuits twice a day, so it's a lot to go through. I tested my vitals one day to document my body's reaction to the biscuits. Before eating the biscuits, my blood pressure was 85/55 with a heart rate of <b>55</b>. After, my BP was 90/72 with a heart rate of <b>134</b>. I was in a deep stupor and out of breath for a few hours. And I am still eating those same biscuits and tolerating them some days more than others but always reacting to some degree. I am in no position to reduce any food, so I just have to live with it.</p><p>Okay, so the timing of a lot of this is kind of uncertain to me. What I do know is that just as the fall cooling down had started, I had one of my worst reactions in recent times. And it was straight up ridiculous. My body had been through so much distress that I was just primed for something new and horrific to happen. I shared this in a support group with someone else who was dealing with a similar problem:</p><p>"I don't even think people would believe how sensitive I am to raw onion. But here goes... My husband was out of town and ate at a meal that included raw onions. He slept out of town and then came home the next afternoon. The moment he walked inside, I began reacting (with the severe burning and vestibular migraine I described earlier). I had to isolate from him for 36+ hours. He couldn't come into the bedroom where I was hiding. The longer he was home, the more the smell of onions filled our living space. It not only stays on your breath but comes out through your pores. He had to sleep on the couch with the windows open. Despite all that, I developed the worst vestibular migraine of my life. It is still severe today. I cannot tolerate any sound. Severe vertigo and tinnitus and trigeminal pain and head pressure. I can't tolerate movement around me. I can't watch TV. The sound of a faucet being turned on and off or the refrigerator running is jarring. I have also had many spells of reduced consciousness (stupor), and my lungs are on fire. Today is day 7. It is absolute torture. Each time I am exposed to onion in any way, I become more sensitized to it."</p><p>That reaction began September 13 and went on throughout September and October. This was a very dark time.</p><p>I found a little info on the likely chemical trigger for me, based on my experience:</p><p>"Allyl methyl sulfide. This compound is released from both garlic and onions when they are cut. Once eaten, the substance is absorbed into the bloodstream, and emitted through the lungs and skin pores." (<a href="https://www.medicalnewstoday.com/articles/321334#why-do-garlic-and-onions-cause-bad-breath">https://www.medicalnewstoday.com/articles/321334#why-do-garlic-and-onions-cause-bad-breath</a>) I believe I have become hypersensitized to this chemical, like so many others.</p><div style="text-align: left;">I also found this article about food hypersensitivity by inhalation:</div><div style="text-align: left;"><a href="https://pubmed.ncbi.nlm.nih.gov/19232116/">https://pubmed.ncbi.nlm.nih.gov/19232116/</a></div><p>Nonetheless, in September, I started experimenting with adding potatoes back into my diet. I started cautiously. I knew I don't do well with sweet potatoes, but I thought gold/yellow potatoes might be okay. And I could tolerate them...sort of. I noted my vitals one time with the yellow potatoes. My blood pressure was 81/52 with a heart rate of 49 beforehand. My body felt calm. Afterwards, my BP was 90/66 with a heart rate of 102. My body felt tingly with an itchy scalp and bladder pain, and my sleep was poor. I tried for a few weeks, but it just wasn't quite working. But I wasn't ready to give up since it was somewhat tolerable. I switched to white Russet potatoes, eating a quarter a potato at a time. I had much less side effects from it, and I have built up to eating a half a potato a day. So I do officially have a new food. In reality, I am reacting after every meal now, so I've also just accepted a greater level of discomfort to follow eating (which is really throughout the day). Some days are worse than others still when it comes to food tolerance, depending on my baseline for the day.</p><p>But what I am eating daily is:<br /></p><div style="text-align: left;">oat biscuits</div><div style="text-align: left;">quinoa</div><div style="text-align: left;">broccoli</div><div style="text-align: left;">carrots</div><div style="text-align: left;">potato</div><p></p><p>Okay.</p><p>After a consult with an integrative doctor, I decided it would be worthwhile to work on weaning off of my Omeprazole, despite the deep level of suffering I experience from acid in my stomach and esophagus. I did a 3-day stool test for this doctor, and it determined that I have severe (10/10) gut dysbiosis, and PPI medications are a likely contributor. There's also a documented association between acid suppressing medicines and the development of food allergies as well as drug hypersensitivity reactions. (<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5464390/">https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5464390/</a>) Please read this article if you take acid reducers of any kind: PPIs, H2s, Sucralfate. Unfortunately, these are often used to treat the excessive acid production in the upper GI in mast cell disease, particularly H2s, which are used to treat mast cell disease, even in the absence of acidic symptoms.</p><p>I have been on some form of PPI since I was prescribed one as a teenager. Doctors were prescribing them pretty freely at the time without recommending only short term usage. I believe the PPI use could be implicated in a number of my symptoms, including a lot of my GI symptoms. <i>"Ever since this first report, several experimental as well as human studies verified this correlation, demonstrating that acid suppressive drugs not only influence the sensitization capacity of orally ingested proteins, but also represent a risk factor for food allergy patients. Additionally, gastric acid suppression was reported to increase the risk for development of drug hypersensitivity reactions. These consequences of anti-ulcer drug intake might on the one hand be associated with direct influence of these drugs on immune responses. On the other hand reduction of gastric acidity leads to impaired gastrointestinal protein degradation. Nevertheless, also disruption of the gastrointestinal barrier function, changes in microbiome or lack of tolerogenic peptic digests might contribute to the connection between anti-ulcer drug intake and allergic reaction."</i></p><p><a href="https://pubmed.ncbi.nlm.nih.gov/20060064/">https://pubmed.ncbi.nlm.nih.gov/20060064/</a></p><p><a href="https://pubmed.ncbi.nlm.nih.gov/29678362/">https://pubmed.ncbi.nlm.nih.gov/29678362/</a></p><p>So there are many mechanisms by which the PPI usage and gut dysbiosis are promoting both my intolerance to foods and medicines.</p><p>So, I started by weaning down from 20mg to 10mg daily. This was my idea. I thought the more gradual drop off would be more likely to stick. These are already low doses of the weakest proton pump inhibitor. Nonetheless, rebound acid and a return of symptoms are common with withdrawal. I decreased my dosage on 10/25, 10/31, 11/5, 11//9, 11/12, and 11/14. Since then, I've been on only 10mg daily. Unfortunately, the return of symptoms has been severe, making it even more challenging to eat. My gut burns. I get reflux up my esophagus into my mouth. I have severe bloating. I have a metallic taste in my mouth with burning and foul breath. The burning pain in my chest radiates outward with nerve pain. And frustratingly, I have to stay awake even later than usual to allow my body to digest enough to be able to go to bed. I am routinely up until about 4 AM now. The baking soda helps, but I try to take it as little as possible since the whole goal is to have more stomach acid, not less. It is frustrating and painful.</p><p>I still have a long, miserable way to go to wean off fully. I was waiting for the symptoms to subside before I start the next wean, but it doesn't look like they will. So the next plan is to skip my dose every 14/13/12/11/10... days until I am off of it. I don't know exactly when I will start, but it doesn't look like I will be able to wait out the symptoms. They are honestly getting worse as time passes. It would be so much easier to just go back to my usual dose and get some relief from literally constant heartburn and reflux. (I go to bed with it, and now I wake up with it too.)</p><p>The thing is, I am being persistent about this (despite deep-seated fears of untreatable ulcerations and esophageal cancer), because I believe it could make an actual difference for me in the long term. So far, I have already noticed improved sleep and decreased need for laxatives. It could be the source of my chronic constipation. It will be a 3+ month weaning process with lots of misery, but I don't really see any choice. I am not really willing to try any other recommendation made by anyone. So this is the misery I am choosing, I guess.</p><p>Okay...back to my diaries. November had some pretty big hits as well, besides the acid misery. Some massive pressure drops put me into a full-on pain crisis multiple times. Widespread burning, massive abdominal bloating, headache, severe lumbar and sacral pain, decreased mobility, bladder dysfunction, interrupted sleep, trigeminal pain, eventually full body pain. It lasts throughout the night when it happens. Just utter misery.</p><p>I had another worse-than-ever reaction to intimate activity. More genital pain than I had imagined possible before this. So the vulvodynia has spread to include clitorodynia. TMI. I know. But someone out there just might read this and deal with the same thing. My severe abdominal swelling has also not stopped since that day in November, although I think it is finally lessening.</p><p>Then, right around Thanksgiving, I had to test a different brand of clear cellulose capsule because the one I buy was sold out. I use these to take my magnesium, which is the only way I have GI movement. These are both made from cellulose turned into HPMC (hydroxy propyl methyl cellulose). Unfortunately, the different brands are clearly not all made alike. I even confirmed before purchase that the ones I bought were one of the "cleaner" brands in how they are processed. The new brand I tried, Solaray, is made of HPMC and water, no preservatives, additives, or excipients. What more could I have done?</p><p>More info on capsules: <a href="https://clearandwell.com/what-are-capsules-made-of/">https://clearandwell.com/what-are-capsules-made-of/</a></p><p>Anyway, the capsule immediately tasted like Lysol, so I initially spit it out. But I knew I had no alternative since my safe brand has been almost completely sold out for the last 6 months, so probably discontinued. So I wiped off the capsule and then swallowed it anyway. I was on a video call at the time, and continued with the video call, despite some crazy symptoms. I immediately got the head pressure and tinnitus, burning chest, adrenaline rushes, and progressed to burning eyes, itching, tingly bladder, mouth burn, a migraine aura, body buzzing, and a level 8 headache. I couldn't sleep. My acid symptoms were much worse. This went on for about a week.</p><p>December brought with it new reactions to airborne food exposures. Because this disease is freaking relentless. It does not let up. So if one thing lets up, something else gets to me instead. So, I've been reactive to the smell of fresh ginger for a while, but my husband has gotten in the habit of immediately throwing it in a ziploc bag and into the trash when he buys his prepared sushi (one of the few foods he can eat at home). Unfortunately, this was no longer enough to prevent the burning pain in my chest and mouth. The smell of pastrami causes the same reaction. Same with whiskey. And these are lasting reactions. Days if not weeks. Not just a few hours. I also started reacting to particularly fragrant apples, even if they are stored in a ziploc bag in the fridge. That causes migraines. Then, the newest one is an airborne reaction to peanut butter. It's probably been going on for a while, but I just finally put it together. I've had really random days of severe sinus allergies with large amounts of mucus produced, intense itching, and the high histamine levels keeping me up all night. (And obviously not being able to treat my allergic symptoms or high histamine) But now I seem to have put them together as a cause and effect. The longer I am exposed to the peanut butter, the worse the histamine reaction. So that's a whole new ordeal in an endless string of ordeals. So, so, so much of the burden lands squarely on my husband's shoulders. Yes, I suffer the symptoms. But he has to watch me suffer and decline in addition to making huge changes to his life to try to protect me from my own freaking mast cells. And he has been doing an amazing job of not making me feel like a burden, even though I know I am. I am so fortunate to have him.</p><p>In addition to new sensitivities developing, I still constantly deal with ongoing sensitivities. The biggest ones that come up in daily life and invade my home are smoke and skunk. I have severe and prolonged reactions to both. I get into the worst trouble when I try to ignore the first hints of the irritants in the air. When I'm being smart, I run to the bedroom at the very first sign of either one. If I'm lucky, the bedroom air will not yet be contaminated, since it's around a little corner. The airspace is somewhat protected. But just a couple nights ago (you know--when the world was turned upside down), I didn't make it to the bedroom in time. So I had to stay in the bedroom with the air purifier cranked and wearing my respirator. The migraine was already well underway, and wearing a respirator pressing up against your trigeminal nerve and squeezing your sensitized scalp does not help! I never know the source of the smoke, but I assume it's usually grilling, and if it goes on for hours, I assume a bonfire. And those people will never know the amount of suffering brought on by their air pollution. We have sealed the apartment up in every way feasible, but plenty still gets through.</p><p>So what's next?</p><div>I am very concerned that I will not survive another warm season in this apartment with the air seepage and lack of access to AC. It is especially ominous now that our neighbor has moved out, and new neighbors will presumably cook much more often than our elderly neighbor did. And who knows? They could use some heinous scented products that get into our place year round instead of just in the heat.</div><div><br /></div><div>So I suppose my new year goal has to be to seek out that needle in a haystack home. Many people in my situation end up homeless when their one safe place becomes unsafe, and they cannot find another. I read about these struggles daily and truly cannot imagine it given my level of pain and my body's incredibly high demand for comfortable everything. That is one of my worst case scenarios--being forced to live out of a car or a tent or survive in a place that is much more hazardous to me. So I will not leave this place behind unless I actually find another place that is at least as safe and can be made safer. At least right now, I have a safe room. My bedroom is nearly always my safest place. I feel immense dread of the search because even a brief exposure to a different environment can cause a setback for months. (The cascade) So even testing out a new apartment by visiting is dangerous. (See the disaster of 2014 and the varnish...NOOOOO.) But medicine has failed me. All I can do is react and adapt and avoid and try to stay safe. So I will have to look for my new safe. I honestly only have one place in mind to try, so my hopes are kind of all in one place. If that doesn't work out, I know that the situation will become desperate by this summer. Just because I technically survived it doesn't mean I could do it again. I have lost so much. I have become a skeleton. I have become so much more reactive than I ever thought possible.</div><div><br /></div><div>Well, there's what I've been up to and what's been on my mind. When all this is what's been going on, it can be really hard to just "catch up" with people. I don't have much else to talk about. My illness is so pervasive that it dominates most of my life. I try my best to have more going on, but more often than not, symptoms take over. But no one wants to hear about this, and I don't really know how to explain it briefly (as evidenced by this post). And I usually don't want to talk about it either. So it's on my blog now. I don't want to think about it anymore. I'll take notes when I need to, and I will save the rest of what I've written to share another day. And hopefully I'll get back to you much sooner this time, because this was a ridiculous undertaking to write this blog. Or I'll just stop writing completely, because giving up is sometimes okay too.</div><div><br /></div><div>I hope you all stay well. I actually do care. Even if I don't usually have the capacity to reach out and connect. I do care.</div>Carolyn Medranohttp://www.blogger.com/profile/02811093427920453122noreply@blogger.comtag:blogger.com,1999:blog-833972720679789479.post-8047700629375178592020-04-21T01:51:00.001-05:002020-04-21T01:57:16.785-05:00Chronic QuarantineIt took over a week for me to get this blog post all written. The brain fog has been terrible, and I've had a pain crisis. Migraines have dominated my existence. Pain so severe, it activates my mast cells, causing fever, nausea, vertigo, widespread burning pain, GI trouble, sleep problems, and bladder pain/dysfunction. Plus, the cognitive impairment is often severe. I still managed to fake my way through a couple of video calls in the early part of the week, but there were times I absolutely would not have been able to. All I could do was cover my eyes and moan and wish for a quick death. But I can fake my way through a hell of a lot. It is beyond frustrating that as soon as there might be a lull in symptoms for even a day, the barometric pressure/weather sets me off. I get triggered by both rising and falling pressure, very high and very low pressure, precipitation, foggy conditions, windy conditions, sudden changes in temperature, etc.<br />
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This is a photo of me while suffering from migraine/trigeminal pain, showing the asymmetry.<br />
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I don't know how coherent this post is since it's been written in so many parts, but I'm sharing anyway.<br />
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So, it's been two months since I last posted. I spent all of March dealing with another infection: my right tonsil and right ear were affected. I also ran a fever most of the month.<br />
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Obviously, the whole world has turned upside down since my last post due to the COVID pandemic. And the whole world has entered a quarantine similar to what I have been living for years. The whole world is learning to adjust to a similar type of isolation that is my whole existence.<br />
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So, my quarantine is similar but quite a bit different than what others have been recently immersed in. The similarities...I am staying home, avoiding unseen airborne particles that could make me very ill, don't change clothes or shower much, lose track of days, lack motivation and meaning, feel uncertainty about the future, and often feel very lonely due to the isolation. What do I call this? How about, "Tuesday"? Or every day. Yes. This is every day of my life.<br />
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But the differences have become so obvious to me at times while hearing people talk about their experiences. Similar to others, I have to be on alert for threats completely out of my control that can strike at any time every day of my life. So yes. I relate very well to those concerns that everyone is now dealing with, in addition to the actual threat of the virus. But with the endless onslaught of new triggers, it's like there are new viruses popping up constantly in my world. New threats around every corner. Also, obviously, my quarantine has been going on for years with no reason to think it will do anything but keep getting worse. I have to be afraid that my only remaining safe environment could become unsafe at any time (and is already contributing to my poor health). I do not get short excursions to the store or a walk outside like others. The outdoor air is rarely if ever safe for me, and my feet and knees become unbearably painful after about 300 steps. But for the time being, the biggest difference is that I am chronically ill with varying levels of chronic pain every single day of my life with no relief in sight. I don't just stay home. I stay home and suffer through my days. Boredom is really not a major concern in my life because so much is about survival and enduring suffering. So I know this is quite different than others. Routine is how I stay safe, so the monotony feels protective, not oppressive. Another way it is quite different for me is that there is no hope of treatment. If were to get infected, I would not be able to receive medical care or any kind of treatment. It is just not accessible to me. This article explains the extra concerns for chemically sensitive patients during this pandemic: <a href="http://annmccampbell.com/covid-19-and-chemical-sensitivities/">http://annmccampbell.com/covid-19-and-chemical-sensitivities/</a><br />
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The strangest part for me for sure has been that while others are struggling with this new isolation, I have been overwhelmed by the amount of interaction and home activity. I am used to my days being largely mellow and quiet and dim and calm and alone. So this has certainly been an adjustment. Like all couples who are both at home full time now, we are having to find ways to accommodate each other into our daytime lifestyles. But I also have not experienced this level of connection with the outside world in years. I wonder if people will still have any interest in video calls once they are able to see each other in person again. I suspect not. I also wonder if doctors will still allow telemedicine when they aren't required to. I again suspect not.<br />
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The hardest part to cope with is the hope that others are allowed that is not meant for me. This type of message is unbearably sad to read:<br />
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I understand that it provides so much encouragement for those who are feeling desperate and trapped. But it just lays out all of the things I am unable to look forward to in life. The ability to look forward to my future at all.<br />
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All of this talk of treatment requiring a ventilator has prompted me to make sure that my paperwork is in order on this issue. Considering how poor my health already is and how poorly my body reacts to literally any medical intervention, I have outlined my wishes very clearly in a POLST document (Practitioner Orders for Life-Sustaining Treatment) as well as appointed a medical Power of Attorney to try to ensure my wishes are respected. This includes my desire not to receive CPR or ever be put on a ventilator, which includes a DNR order. This is incredibly important to me. I do not have any medical doctors really anymore, so I have no one to sign my POLST form. I can only hope it is adhered to or that my husband will be able to have my wishes respected if the time comes. I had a medical POA and a DNR after my last surgery, but I was given every indication that it would not be respected when a crisis actually came. I still remember feeling the need to cry out, "No tubes," because I was being threatened with intubation. This is why we really need strong advocates. I still need to have my power of attorney documents signed by a non-related witness though. So that is not really in place either.<br />
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So, my daily routine has gone mostly unchanged with the exception of my husband being at home. My diet is unchanged besides attempting increased portions, and my meal times remain the same. I have stuck with my same home exercise routine to try to maintain some strength. I have been really good at following it for the last 6 months, whenever the pain level is below an 8 and I don't have a fever. Unfortunately, my weight loss has been very limiting. At this body weight, my energy is lower than ever, and I am incredibly weak. I weigh a full 35 lbs. less than I did at my heaviest, and I was always slender. This kind of drastic weight loss is very difficult to cope with. Not just the hunger but the psychological toll. It is hard to feel yourself get weaker due to muscle wasting. It is strange to see new bones begin to protrude. My sacrum is so exposed now. My ribs and pelvic bones are very visible. And sadly, my round, smiley cheeks are gone. Instead, my face looks long and gaunt. It's weird to shower and wrap your arms so far around yourself because there isn't much of you anymore. It's strange for your wedding ring (which was fitted when you weighed 100 lbs.) to become loose. It is painful to no longer have the padding of flesh. And it feels like no matter what I do, I can never gain back what's been lost. Watching the scale decrease despite my best efforts is so hopeless. And my usual exercise routine becoming harder and harder despite my dedication is such a letdown. Like no matter what I do, I'm up against something too big to overcome.<br />
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As the pounds have slowly but steadily slipped away, so did my life force. The intensified chronic fatigue makes life even harder than it already was to get through. My ability to accomplish anything or interact much at all beyond my tasks of daily living is so low. And just getting through my daily routine often feels like an insurmountable challenge. My blood pressure being 70-80/40-50 definitely doesn't help with this problem. My blood pressure very rarely reaches 90/60, and my heart rate no longer helps out! My heart rate is usually in the 50s, so it's doing nothing to compensate for my hypotension. With such low vitals, I black out and have near-fainting spells very frequently, and there is just no energy to spare. Not enough oxygenated blood reaches my brain. Even wearing compression hose barely helps at all, because compression is difficult to achieve when your legs are skeletal. Also, I often no longer get my evening or late night burst of energy that I used to be able to rely on. This has worsened my quality of life quite a bit.<br />
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I did have a phone consult with my dysautonomia specialist, but even one of the very top doctors was not able to come up with a recommendation that he thought I would tolerate. That was a difficult email to read.<br />
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Digestion has been a major issue for me. My 5 safe foods are not the 5 foods that are easiest for me to digest. They are the only ones that my whole system can tolerate. I can no longer follow a low fiber diet appropriate for low motility. I have to eat what my system will accept. Digestion is actually an incredibly draining process that is often quite painful as well. I have also been maximizing my portion sizes as much as possible, leaving me incredibly bloated a lot of the time. Unfortunately, despite painfully adding about 150 calories to my diet, I have not regained any weight. Also, the food cravings can be incredibly intense when your body is crying out for more. There was a mention of French toast on a TV show tonight. They didn't even show it, or if they did, I looked away. But I haven't been able to stop thinking about French toast. This can happen with almost any food ever. Food commercials and advertisements for recipes and meal posts just seem cruel.<br />
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One thing I have a lot of difficulty explaining is the nature and degree of my cognitive impairment. It is variable and a little hard to describe. (It's pretty hilarious that I needed my husband to help me write this section. I have trouble putting it into words...which never used to be my problem!) I know my own lived experience, but it's hard to make sense of your own cognitive impairment for some reason! He explained it as low mental acuity with an undercurrent of energy due to ongoing low level reactions. In other words, my brain is usually a little agitated while also having a difficult time focusing. This helps to explain my default state during the daytime: I play simple games on my iPad, just to keep my brain from totally zoning out, while also watching shows on my laptop. I actually don't have the attention to be able to focus on just one thing most of the time. This is my comfort state. This is how I spend so much of my time. My brain has developed severe inattention, so it takes a lot of effort to just pay attention to a TV show. It actually takes much less effort if I am also playing a game. Although, I certainly miss out on plenty of the shows. ADHD medicine has been very helpful to me in the past but is no longer tolerated, like just about everything else.<br />
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Another good example of my level of cognitive ability is what my husband affectionately refers to as "trout face." While I am watching my shows and playing my games, my face is often completely blank, staring, with my jaw hanging loose. This is the trout face. I look minimally conscious (like a vegetative state), to be honest. And it is really my default expression. It requires energy to have a more normal expression on my face. I don't have that energy to spare most of the time. It can feel like my face is a mask, and I am unable to move it. I also think my mouth is open to help intake more air per breath with less effort, since my narrow sinuses are often inflamed. This happens on a daily basis. When pain is overwhelming my consciousness, I also revert to the trout state.<br />
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One facet of this is the effect of barometric pressure, temperature changes, and precipitation on my mental state. There is a huge correlation. I'm sure that sounds crazy to some people, but the strong association with migraines makes me believe it. Especially with my CSF pressure issues. Low pressure and oncoming storms lower my level of consciousness. Rising pressure or high pressure may also be painful, but I'm more likely to feel agitated and have trouble sleeping.<br />
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This whole cognitive problem really came about back in the dreadful year of 2013, almost immediately post surgery, when my mast cells got kicked into high gear. Suddenly, I was unable to follow an episode of Friends. I felt so confused. It is also when I had prolonged episodes of reduced consciousness and even loss of consciousness. Basically, it feels like they broke my brain. And then, it has gotten significantly worse over the last 6 months without my antihistamines. Antihistamines might make you feel drowsy, but if you are existing in an intense histamine fog, a Benadryl can help you come out of that fog and perk up quite a bit. I'm not me anymore, and that becomes more apparent with time. I am starting to understand all that I have lost of me. The cognitive issues seem to be actively progressive, affecting every part of my life and who I am.<br />
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My inability to follow TV shows also demonstrates my reduced cognitive capacity. So, I can no longer follow fast dialogue or very complex plots. Two shows that we started but were unable to continue were The West Wing and Damages. Interesting, high quality television. But I needed to pause and have my husband explain the previous scene between each scene! It was an exercise in futility. I have not often felt so stupid in my life. And I'm not saying I missed the intricate details. I mean that I literally absorbed and retained nothing from each scene. Another pretty huge example is Game of Thrones. Now, I did have some difficulty following the plot throughout, but usually reading episode recaps was enough to help me follow along, although my husband had to remind me of story lines plenty of times, much to his frustration, I'm sure. Memory is a major issue as well. I often retain very little between episodes and even between scenes. With Game of Thrones, I was only getting the broad strokes of characters and plot. Details were completely lost on me. Foreshadowing: gone. Anything beyond the main dialogue and major plot lines was completely lost on me. This seems to be why I did not share the common disappointment (devastation?) over the last season. I wasn't able to be let down, because I was never able to keep track of everything anyway. The main problem is my inability to focus and my slow processing speed. There are also processing issues (visual and auditory). I have no visual memory. So, slow but interesting dialogue without a lot of background distraction works best. I miss out on a lot due to my inability to focus, both on TV and in life. I can't even follow what someone is saying to me if there is background noise or activity.<br />
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Another area in which my cognitive impairment shows up in odd ways is in my social interactions. I often get asked how I am able to have seemingly normal social interactions if I am so impaired. If I'm not called upon, I remain in "trout face". However, when I am called upon, for example, for a text conversation or even a phone or video chat, my brain is sometimes able to muster the energy and the focus to attend to that interaction. However, this is variable and unpredictable, so I often don't answer. Plenty of times, I start an interaction and gradually fade away. Often, depending on who I'm talking to, conversations end up one-sided since I am too slow to contribute or ask questions. But other times, I seem to be able to have a normal conversation, although how much I have actually absorbed and retained varies. After I have engaged in an interaction (or any activity, really), I often retreat back to trout face and sometimes will even crash into a stuporous state. Sadly, this makes it even more difficult to socialize and explain my inconsistent ability to engage.<br />
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The last part of this is sensory overload. My brain gets overwhelmed very easily. Brightness often triggers ocular migraines. (And not what most people would consider bright...minimal or very brief brightness). But recently, I have learned that during the day, having too much light can also trigger an intense sense of uneasiness, an inability to relax, which can set off my other symptoms of mast cell activation.<br />
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Okay. That was a lot. I know that was a lot. It took forever to put thoughts into words and type them somewhat coherently! But I'm not done yet, because I have had so much on my mind that I need to get out! And I barely ever manage to do it. I wanted to write a bit about what's going on recently. The last few weeks, I have had two prolonged reactions overlapping (or more, depending on what you count). As soon as my infection and fever were gone, I decided it was time to trial my next potential medication filler for compounding in the future, which is my only real hope for future treatment. So, since I have already failed Avicel (microcrystalline cellulose-wood pulp) and rice flour, I decided to try tapioca starch. It is such a freaking inert substance tolerated by just about anyone. And how much did I try? About 1/16 of a teaspoon inside a safe capsule that I know I tolerate. That was three weeks ago. It caused my burning insides to return. I had had a nice respite from that symptom, but it is back full force now. It also made my eyes burn, my mouth burn, and my crotch burn. Additionally, I got a very full feeling in my throat. Throat symptoms are always something to be wary of. Now, I had overlapping reactions, so I can't say for sure, but these symptoms are persisting. I'm also becoming much more reactive to showers and flushing at random times, which is difficult. This is my face after a shower. Flushed with a rash. Being so pale, my flushing isn't as obvious as some. But if you know my porcelain-skinned complexion, you can recognize the delineation between my white skin next to my ear and the pink flushing on my cheek. I used to always have the same skin tone all over with no variation.<br />
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Here's another one that shows the flushing.<br />
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The next reaction was just three days later. It was a result of intimate activity. These two issues combined caused total misery. By the next morning, I had gained 5 lbs. of swelling, mostly around my pelvis. (Weight gain seems great, but this kind is fleeting.) Burning pain all around. Uterine cramping. Bladder retention and burning. And very sadly, my severe intestinal bloating after every meal has returned and persisted. I also ended up with another yeast infection and a fever of 99.7. (My normal is 97.6.) The fever lasted for several days, during which time my total body pain was about an 8. I mean head to toe pain. My mantra to myself has been "Give It Time." It feels like it's been forever, but it's only been 3 weeks. I just finished treating the yeast infection, so the worst remaining symptom is the severe bloating (often about 5 inches added to my tiny frame). I seriously just inflate like a beach ball in my gut. I just have to hope that this does not become permanent. But of course, symptoms easing up requires trigger avoidance, which is freaking impossible so much of the time!<br />
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I have a lot of concerns with summer approaching. Already, we have had some warmer days. And on warmer days, every smell is stronger. Scents permeate so much easier in the heat. Scents mostly get inside through our bathroom from the neighbor's apartment. I know every time she cooks and every time she uses scented products in her bathroom. And I don't just smell it in the bathroom. I smell it in the living room too. Scents also come in through the hallway door, although that has been sealed up with tape for quite a while. It's not much of a problem in the colder months though. Another big issue with summer is mold growth. Our bathroom lacks ventilation and is a bit leaky, so it grows plenty of mold. Mold seems to be a bigger and bigger issue for me each year. I have had to replace our bedding and get rid of old clothes and towels. This will be the year I finally get a dehumidifier. We have no room for it in the bathroom, but that's where it needs to go, so we'll make it work. We need it in the summer, because our wall air conditioner removes almost no humidity from the air, so we often reach very high humidity levels. I also have concerns about summer heat. When the heat and humidity are high, our air conditioner is not sufficient to cool the apartment, especially the bedroom. And heat is a vasodilator, so it lowers blood pressure and causes prolonged loss of consciousness. It also activates mast cells, so it gets you both ways.<br />
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Another summer concern is the outdoor air. I have the air conditioning unit really well sealed up right now so that I am mostly protected from the outdoor air contaminants. (Skunk smell still gets in somehow...or it could be marijuana smoke. I can't tell the difference!) But in the summer, that obviously needs to be unsealed, which allows tons of outdoor air inside, along with the air conditioner itself, which blows largely unfiltered air into the home. So every time a neighbor grills, the smoke gets inside. Every time a neighbor does laundry, the fumes come inside. Those are daily concerns all summer/early fall. Asphalt is another huge trigger that gets into the air and into my home in summer. There is no where safe. I am also truly terrified to find out if my mom's house will be safe again for me this year. Of course, I need to be in a state where I am not currently having a reaction. And then I have to be brave enough to test it out. I need to be smart about the timing. There is an idea called the activation threshold. Basically, similar to migraines, reaction begets reaction. If you are already reacting to something, you are at high risk of developing new reactions. This is why I have to spread everything out so ridiculously much. I know not to try something new unless my system is in a calm (for me) state. Many people with chemical sensitivities end up without a safe home, which is a scary prospect. So it's important I don't push myself. Anything can trigger an escalation. One big trigger or multiple compounded triggers.<br />
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Summer is also a scary time to have no antihistamines. As soon as we had our first thaw, I began suffering my first seasonal allergies without high doses of antihistamines around the clock. The sinus drainage has been terrible, the itchy eyes, and my ear is blocked a ton of the time. Nasal rinses seem to make it worse. And I still cannot tolerate any allergy eye drops or nose sprays. The fear of a mosquito bite with no round-the-clock Benadryl is also huge. I have massive, systemic reactions to bites. And the only way I have survived in the past is 2-3 Zyrtec a day plus a Benadryl every 3-4 hours and ice to numb the site of the bite for at least a week. I have no idea how I will survive my next bite if I don't have Benadryl by then.<br />
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My histamine symptoms are troublesome during the day, but they really flare overnight, when histamine levels peak. This is a rough photo of me on an average night. I sleep in two parts, so I always wake up during the night. At that point, I use the bathroom and apply more dry eye lubricating drops, because by then, my eyelids are swelling badly. They swell so much that the tear ducts get swollen shut, causing the corneal abrasions. But itching and sinus drainage and crawling skin sensations and heart pounding are also common overnight. In this photo, my lips are also swelling, as they often do at night. I rarely share photos of myself anymore, because my appearance is so embarrassing to me.<br />
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But of course, I have no allergist and no way to compound meds. I'm also not particularly willing to trial anything else. I go through way too much from each trial. And every time I tell myself, "Stop Trying New Things!!!" So, I have no idea what I'm doing. I guess I'm waiting for my current round of misery to end to hope I can get brave enough to approach whatever's next. I lack motivation to act now though, because I don't intend to try anything new. Just trying to maintain this marvelous status quo. But I need to find out if any local compounding pharmacies will compound the active ingredient in a capsule I give them with no filler. If not, I need to keep trying the fillers I haven't tried yet: sucrose, oat flour, quinoa flour, potato starch. But that will obviously be months of trials. And I don't want to wait that long or go through the extra suffering.<br />
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Then, I would have to see if my previous, less-experienced immunologist will see me again and try to help me. Ideally, she would be able to offer a phone appointment. I need to find some way back on antihistamines. They affect so much more than allergy symptoms. I also need to consider compounded Celebrex to reduce prostaglandins. I could attempt compounding Cromolyn Sodium, but I don't have much hope in that med for myself. The only other ideas on my list of "treatment options left for me" are Xolair injections (higher risk) and maybe Gamma Core vagus nerve stimulation. Dr. Barboi still wants me to try the chemo drug, Gleevec, which seems highly doubtful. That's about the end of the line for me.<br />
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I actually have more to write about in my blog notes, but I doubt anyone would keep reading beyond this point, if anyone even reached this point. So I will save it for next time. Thank you for reading and checking in on me. I love that people still care about my endless saga. This disease is progressive and relentless. Not for every patient. But for me, Mast Cell Activation Syndrome eats away at me, causing ever-increasing suffering and limitations. I don't even know how to hope for anything different anymore. Hope is a dangerous thing and brings so much pain. More on this in the next (super uplifting!) post.<br />
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Thanks again for reading what feels like a very incoherent post! I swear, I proofread many times, but I still don't know if it makes sense.Carolyn Medranohttp://www.blogger.com/profile/02811093427920453122noreply@blogger.comtag:blogger.com,1999:blog-833972720679789479.post-61547643926675197852020-02-13T18:24:00.003-06:002021-09-04T18:06:13.290-05:00Fragrance-Induced SuicidalityYes, that title is a bit shocking. But so is the experience of it, and I haven't read many people write about it (although I know others experience it).<br />
<br />
So, I bit the bullet and saw the gynecologist. And I have survived to regret it. I will never again care about a yeast infection or anything else that might possibly go away on its own (which I have been learning is just about anything). NOTHING, and I mean nothing, is worth going through what I went through this last week.<br />
<br />
His office was so scented that when my mom brought the clipboard to the car for me to fill out the forms, the clipboard and the pen both reeked, and they could not be in the car with me. We also had to leave our coats and purses in the car to prevent that scent from invading everything.<br />
<br />
I was inside for about 45 minutes. That was apparently the absolute fastest they could get me in and out for a simple swab.<br />
<br />
(By the way, I wore my respirator the whole time.) Here is how the reaction progressed:<br />
Day 1: During the appointment, I could feel excess mucus accumulating inside my sinuses and dripping down my throat. The trigeminal pain started as well. My eyes were burning like crazy. Upon leaving the office, I was in a hypomanic state. My skin was crawling. After a few hours of aggressive showering and a nasal rinse, I crashed into extreme exhuastion with abdominal bloating/pain and a migraine began at my left temple. If this had been the extent of it, I would see it as a tolerable reaction. (How sad is that?) But it really hadn't even begun yet.<br />
<br />
Day 2: Burning eyes, altered taste, sinus pressure, burning chest after ingesting anything, exhaustion and stupor, too bloated to eat much, itchy ears and abdomen and raw mouth after eating, waves of goosebumps, vertigo, nausea, joint/muscle pain, complete lack of energy/motivation, worsening chest burning, bladder pain, in and out of consciousness, intense head pressure worsening as the day went on. And significantly, I was experiencing obsessive suicidality. I couldn't do anything about it, not even cry or talk about it. I was barely able to move outside of bathroom trips. But the degree of obsession with needing to die was intense.<br />
<br />
Day 3: Blue lips, global head pain level 8-10 (feels like my brain will explode), nausea, vertigo, burning lips, teeth pain, bladder pain, chills, goosebumps, in and out of consciousness, most painful day so far, severe depression, no energy.<br />
<br />
Day 4: Burning eyes/mouth/face, pressure in head and face/teeth increasing as the day progresses, more energy with deep depression, all symptoms worsening throughout the day, burning core, burning vulva, pounding heart, shortness of breath, lips burning, vertigo, blacking out all day but stayed conscious, orthostatic tachycardia/hypotension severe, intense suicidality with increased alertness.<br />
<br />
Day 5: Depression/suicidality wore off as the day progressed along with the severe pressure in my brain. Orthostatic tachycardia/hypotension continued. A new weather-related migraine began, but I was back to myself mentally.<br />
<br />
So, today would be day 8. I am not back to my supposed "baseline," but I am able to reflect back on what happened and its severity and its implications. I still feel pressure in my head, and I have a weather migraine wearing off, but nothing like the off-the-charts level pain I had.<br />
<br />
<br />
<br />
<br />
I'm sharing based on the idea that you must give voice to the darkness if you ever hope to find the light. Also, I know that sharing my struggles can help others feel less alone. And I have never been one to hide the darker sides of chronic illness/pain.<br />
<br />
I wrote this diary entry on day 2, before the stupor got so bad that I couldn't communicate. Of course, I wrote this at bedtime, when my mind is the most alert:<br />
<br />
<br />
"Pain is horrible. Exploding head. Burning is horrible. Eating is intolerable. Obsessed with wanting to die, just like the night before the appointment and the day before the appointment and the night after the appointment.<br />
<br />
I was suicidal because I knew how much the appointment would make me suffer, and now I am even more suicidal because I was so painfully right. Excruciating pain. Can barely tolerate food. Can't sleep. Passing out. I am at high risk of losing safe food/meds when I flare this badly. I cannot face another appointment. I cannot go through this suffering another time and keep wanting to live. I cannot face a life where leaving home or having exposures at home makes me suffer so badly. I am obsessed with needing to die before it is necessary to leave home again or I get exposed again. I do not belong on this Earth. It is not tolerable for me. The endlessly repeating agony has destroyed any desire to go on. I refuse. I refuse to go through this ever again.<br />
<br />
I don't want any visits. I don't want any company. I need to die. I need it to stop.<br />
<br />
And I am sure a lot of what I am feeling is from neuroinflammation from the reaction. The brain swells. It can cause severe depression along with the fog and the vertigo and the passing out and the feeling that my head will explode. It will go down, but I will inevitably run into more triggers and have to leave home many more times and get exposed at home many more times and go through this over and over again, on top of the immense pain, and I cannot face that life. I refuse. As soon as I think I can manage to keep going forward, I get crushed again. And I always will. There is no way out.<br />
<br />
I don't want to problem solve. There is no solution. There is no way out of hell.<br />
<br />
I never should have gone out. I should have waited and then tried to get another extension. I should never leave home again. I can think about nothing but the necessity of death. I am obsessed. Nothing is worth this level of suffering.<br />
<br />
I know it won't stay this bad forever. But I'm not dumb enough to think it won't get this bad and worse over and over again for the rest of my life.<br />
<br />
Life has become about avoiding, enduring, and distracting from pain and suffering. There is no pleasure. There is nothing to look forward to. There is no joy. There is no hope.<br />
<br />
I don't care about anything. Nothing matters anymore besides death. I have no interest in the future or trying to fix or prevent anything. Only suicide, because I truly understand now that it is the only way out.<br />
<br />
All of my hard earned gains have been lost. My quality sleep. My decreased head pain from magnesium. My digestive regularity. My food tolerance. My energy level and how to best use it. Feeling like I had a purpose and working toward it because I cared. Sticking to an exercise routine where I was seeing improvement, and caring about it. It is all wiped away. I care about nothing besides avoiding ever feeling like this again. Death is the only way to make it stop. I refuse to be strong and brave and resilient. I have endured too much. I have been pushed over the edge. I am too beaten down. I am empty. I am nothing. I deserve an end to this miserable life full of agony. I cannot keep pushing myself. I am weak. I am done. No more problem solving. No more fighting. No more pushing. No more enduring and surviving. Just let me die. Somehow, let me die."<br />
<br />
<br />
<br />
So, that is the place I lived for the endless minutes and hours and days after exposure. Unfortunately, the one person I opened up to at this point was my mom, so she had to endure knowing about my obsessive thoughts. We both agree that I was not myself at all. That wasn't me talking. I was cold and resolute and determined and certain. Not my normal state when dealing with suicidal ideation.<br />
<br />
<br />
Now, I have a pretty good understanding of how this came about, and I will share it with you. Because if I have learned anything from medical mistreatment and gaslighting for over two decades, it's that you must have a good understanding before sharing. And be careful who you share with. I do not intend to tell a mental health professional or any other medical professional about this episode. That is how you get labeled a psych case. That is how you stop being treated as a "medical" patient, and doctors stop believing your self-reported symptoms. If they knew about this episode, they would lose all ability to see me as a rational human being with any level of intelligence or awareness of my situation. I have been through it countless times. These types of episodes have contributed to my medical trauma and distrust of physicians.<br />
<br />
So, here's the explanation, with scientific articles to back it up. Unfortunately, I cannot share a single article that sums up exactly how and why this experience came about, but if you put the pieces together, you can see how easily it happened.<br />
<br />
First, you have to understand that mast cell activation and all of the chemical mediators they release when triggered to degranulate cause inflammation. This includes neuroinflammation. <a href="https://www.sciencedirect.com/science/article/abs/pii/S0149763417300295">https://www.sciencedirect.com/science/article/abs/pii/S0149763417300295</a><br />
<br />
"Mast cells reside in the brain and are an important source of inflammatory molecules. Mast cell interactions with glial cells and neurons result in the release of mediators such as cytokines, proteases and reactive oxygen species. During neuroinflammation, excessive levels of these mediators can influence neurogenesis, neurodegeneration and blood-brain barrier (BBB) permeability. Mast cells are considered first responders and are able to initiate and magnify immune responses in the brain."<br />
<br />
<br />
Next, this article focuses on more common diseases that can cause neuroinflammation, but it explains the association between neuroinflammation and depression: <a href="https://www.researchgate.net/publication/299342763_Disease-Induced_Neuroinflammation_and_Depression">https://www.researchgate.net/publication/299342763_Disease-Induced_Neuroinflammation_and_Depression</a><br />
<br />
"High rates of comorbidity between depression and specific medical disorders, such as, stroke, chronic pain conditions, diabetes mellitus, and human immunodeficiency virus (HIV) infection, have been extensively reported. In this review, we discuss how these medical disorders may predispose an individual to develop depression by examining the impact of these disorders on some hallmarks of neuroinflammation known to be impaired in depressed patients: altered permeability of the blood brain barrier, immune cells infiltration, activated microglia, increased cytokines production, and the role of inflammasomes. In all four pathologies, blood brain barrier integrity was altered, allowing the infiltration of peripheral factors, known to activate resident microglia."<br />
<br />
<br />
Finally, this article specifically focuses on how brain inflammation as the underlying cause of suicidality in major depression:<br />
<br />
<a href="https://www.sciencedaily.com/releases/2017/09/170921104245.htm">https://www.sciencedaily.com/releases/2017/09/170921104245.htm</a><br />
<br />
"In the study, Dr. Peter Talbot and colleagues found that the increase in the inflammatory marker was present specifically in patients with MDD who were experiencing suicidal thoughts, pinning the role of inflammation to suicidality rather than a diagnosis of MDD itself."<br />
<br />
<br />
So, I think given this information, it is not a huge leap to make that a massive mast cell degranulation event leading to inflammatory mediators flooding the brain and seeping through the blood brain barrier could lead to overwhelming, all-consuming suicidality.<br />
<br />
<br />
So, there's my case. (Sorry for the mini lit review. It felt important to include.)<br />
<br />
The people I feel I owe an explanation to the most are the people I am closest to in life. But they are also the ones that don't require an explanation. They simply believe me and accept me. And for that, I am truly grateful.<br />
<br />
I am still clearly coping with the after effects, mainly persistent head pain/pressure, photophobia, widespread burning, bladder pain, orthostatic symptoms (POTS), and lethargy/stuporous states. Emotionally, it is more coping with the aftermath. I am back to myself. I'm not saying that's great, but it's a heck of a lot better than the hell I was living in. You could tell the suicidality had subsided when I cleaned both the toilet and the bathtub. Those are certainly not tasks you would undertake if you had no intention of living.<br />
<br />
But the reality is, now I know that this type of reaction is possible, and that makes exposures even more dangerous. I have no intention of purposefully exposing myself to anything in the foreseeable future.<br />
<br />
So, my next psychiatry appointment will be over the phone (thank to my mom pleading my case).<br />
<br />
Beyond that, my mast cell specialist has actually taken medical leave followed by early retirement. I no longer have a doctor on my side. Which probably doesn't matter much since I cannot tolerate more medicine trials, and I certainly can't risk any of the "serious" treatments like biologics or chemo. I can't even take a freaking compounded Benadryl or step foot in a hospital, for god's sake.<br />
<br />
So, I am so very much on my own. But the reality is, no doctor has been able to figure me out or help me in so many years. I am the only one who can help me. In the last month, I solved both my daily laxative and my discontinued cereal dilemmas on my own. There is not a doctor that could have solved these problems for me.<br />
<br />
For a daily laxative, I finally figured out that I could essentially compound my own magnesium oxide powder into the clear hypromellose capsules. I figured out the dose I need, and problem solved. It took time and painful experimentation, but honestly, no doctor would have recommended that to me.<br />
<br />
When my cereal was discontinued, I also had to experiment and figure it out for myself. I developed a recipe for oat flour biscuits that I can actually tolerate! The bad news is that my weight has dropped off and is consistently around 92 lbs. I am officially 20 lbs. under the minimum weight for my height. It's not great. I am starving. But I am also constantly eating what I can and doing my best.<br />
<br />
In case anyone else is struggling and may be helped, here is my recipe, that I am certain could be adapted for other flours/oils/milks:<br />
<br />
Oat Flour Biscuits<br />
<br />
Makes 45 biscuits<br />
<br />
Preheat oven to 350°.<br />
<br />
Whisk these together:<br />
2 cups almond milk (Edited: I use Elmhurst oat milk now)<br />
2/3 cup olive oil (Edited: I use grapeseed oil now)<br />
<br />
Add, using hand mixer:<br />
4 cups oat flour (or try another flour)<br />
1 t. salt (optional, for taste)<br />
1 t. baking soda<br />
<br />
Mix well. Drop by spoonfuls onto baking sheet. Bake for 12 minutes. Remove to rack to cool completely.<br />
<br />
It is a bit hard to get down, as I find them to be quite dense. It takes small bites and a slow pace for me and my gastroparesis. Also plenty of almond milk to rinse it down. But they have become my absolute favorite food! Never in my life did this former sugarholic think I could ever enjoy a baked good without sweetener. But they are delicious! They look a bit like a cookie but taste kind of like an English muffin.<br />
<br />
Anyway, this has only further solidified for me the fact that doctors cannot help me. Only I can solve the puzzle that is me. And I am sure my recent experience has added to my medical-related trauma. That is only natural given the severity of my prolonged reaction.<br />
<br />
But I will say that, like last time, I don't know how many more body-on-fire, heart pounding, insomniac, face exploding, and now suicidal reactions I can handle. This situation is not tenable. And yet, there is no alternative. There really is no way out. I don't even have a freaking doctor anymore. Hope is hard to find. For now, it is just embracing safety at home. That is all there is.<br />
<br />
I know a lot of people don't really believe on sharing the negative parts of their experiences, chronic illness or not. (Especially those DNRS patients who aren't allowed to even think about their illness or their symptoms, much less express them.) So, they shouldn't read my blog, because I keep it real here. I always will. I don't live in denial. I accept all sides of my reality. In addition, I have a deep appreciation for genuine relationships that are not based on some fake, positivity-only version of your life. I appreciate every person that goes through the ups and downs with me, even when they are mostly downs. And I am so grateful for my husband for helping me through the crisis over the weekend and weathering every storm with me. I can only hope that this does not become a regular reaction for me, and it was just associated with a specific chemical that I will NEVER encounter again. I certainly will not be in environments that scented very often in my life. I do not have hopes for magical/impossible cures and healing in my life. All I can do is get through each challenge and obstacle and torture as it comes.<br />
<br />
I do not post these blogs looking for sympathy. I just hope to promote better understanding.<br />
<br />
As always, thank you for reading. Thank you for caring.<br />
<br />
<img alt="Image result for i've built more relationships with people by being open about my struggles than I ever could have pretending like i had it all together" height="320" src="https://pbs.twimg.com/media/EFKkY5fWsAUTCVJ.jpg" width="320" />Carolyn Medranohttp://www.blogger.com/profile/02811093427920453122noreply@blogger.comtag:blogger.com,1999:blog-833972720679789479.post-56267876265899846982020-01-08T01:52:00.002-06:002020-02-13T16:54:45.127-06:00The never-ending flareMCAS is a difficult disease to explain. I always feel on the spot when I am asked to explain. So I put together this blurb, attempting to summarize a complicated condition:<br />
<br />
I have an immune system dysfunction. My main immune system cells (mast cells) get set off abnormally by seemingly benign triggers, including most food, most environments, most medicines (and inactive ingredients), and even things like vibration, exertion, and weather. It is impossible to avoid all my triggers. The activated mast cells cause great amounts of inflammation all throughout my body and even damage connective tissue, which causes a huge variety of symptoms--primarily pain, fatigue, neurological, GI, allergic, and cardiovascular. There is a risk of anaphylaxis to just about anything. Reactions can be severe and prolonged. Due to this, I am essentially always suffering from overlapping reactions. It's a very complicated and uncommon condition that is not easily treatable and very difficult to control. My case seems to be particularly difficult due to widespread food, medicine, and environmental intolerance. Some people's hyperactive mast cells are more discriminating, but mine seem to degranulate from just about anything, including the medicine that is meant to treat it (and that helps many other sufferers).<br />
<br />
That's about the best explanation I could come up with. It doesn't come close to describing the struggle, but it's a start.<br />
<br />
I've been thinking about the sacrifices my illness demands of me over time. How I have been chronically ill for so long, but it really is a different level now.<br />
<br />
Previous sacrifices I had to make (let's say late teens through early 30s):<br />
using a wheelchair as needed<br />
giving up going to the gym<br />
giving up going for walks for exercise<br />
days in bed to recover after a night out<br />
only very basic, restful travel<br />
less food choices<br />
giving up shoes and hair/cosmetic products<br />
I could make careful plans and only have a 50% chance of canceling.<br />
I could only run a short errand independently when feeling up to it.<br />
I could never work as much as I wanted to or support myself.<br />
I could not have a child.<br />
<br />
Most of those seem trivial now. The types of sacrifices I have to make now:<br />
the ability to cook/be around most food<br />
holidays<br />
public places<br />
visiting at people's houses<br />
attendance at funerals and weddings<br />
seeing most of my loved ones<br />
hugs<br />
leaving my condo<br />
access to medical care and pain/symptom management<br />
most medicine<br />
access to emergency care<br />
being able to meet my nutritional needs<br />
<br />
I have learned to dream smaller and accept less and less of this life.<br />
<br />
I don't know how many more body-on-fire, heart pounding, insomniac, face exploding reactions I can handle. I don't know how many more progressions I can endure. When I trial something, and I react to it, it's not just the symptoms that day or that week but the escalation of my baseline level of mast cell activation that is really scary. I have to be able to tolerate that baseline to find the will to keep going on. Only I have to live in this body. I experience 98% of my symptoms completely alone. I pay for every trial and every exposure. Every time a neighbor smokes too close to my window. Every time a neighbor burns food or does laundry. Every time anything comes into my environment that I can't avoid. Every infection I catch, despite my isolation. Every medicine trial. Every attempt to add a food. Every trip to a doctor or a new environment. I suffer for it, and the condition progresses.<br />
<br />
Well, the last time I wrote, I was in a flare that began in July. That flare has persisted and progressed constantly since the summer. In July, I made a list of triggers that had spurred on the flare at that time:<br />
<br />
trialing hard-boiled eggs<br />
a new reaction to yellow dye in medication<br />
exposure to cooking smells and smoke smells<br />
the severe pain of my herniated/ruptured disc injury in June (level 8-10 pain)<br />
storms/barometric pressure highs and lows<br />
insomnia<br />
the chimney smell and the smell of the chimney treatment<br />
high stress/grief/sobbing<br />
<br />
The symptoms I was experiencing regularly from these triggers were the following (also a good summary of my symptoms in general)<br />
<br />
severe pain (localized and generalized)<br />
burning chest/face/eyes/crotch<br />
insomnia (yes, a trigger and a symptom)<br />
lethargy<br />
brain fog<br />
agitation/manic energy<br />
severe itching of the nose/eyes/throat/chin/surgical area at the back of my head/neck<br />
raw tongue<br />
pounding heart<br />
diarrhea<br />
crawling/tingling skin<br />
trigeminal pain<br />
stupor<br />
migraines with auras (At one point, I had a migraine 86 of the last 90 days)<br />
repeated syncope while supine (not related to blood pressure. At another time, I had 3 migraine auras in 24 hours.)<br />
shortness of breath<br />
hot flashes<br />
waves of goosebumps<br />
<br />
Then, in August and September, I experienced an elevation of the flare. Exacerbating factors were attempted visits to mom's house (which I had become reactive to), trialing a medicine called Zyflo, outdoor visits with my nephews with many exposures (smoke/laundry smells), weather changes, breakthrough bleeding leading to menstruation (first in many years), a failed food trial of coconut butter, exposure to a strong smell of burnt popcorn that had severe effects, and a high emotional stress weekend with total insomnia. I also had the flu from August 31 to the end of September. It presented with high fever and extreme body aches and a persistent cough. By October, I had reached a completely intolerable state 24/7.<br />
<br />
I had constant migraines/pressure in head/face, burning inside, itching all over, allergic symptoms, agitation/restlessness, pounding heart, constant shortness of breath preventing movement, reactions to all food, inability to concentrate on anything, GI distress. My body was on high alert. I felt constantly like I had been running for miles and couldn't catch my breath.<br />
<br />
So, in early November, I could not stand my existence anymore. I had to make changes. I had to give up my only remaining mast cell medications. I believe I began reacting to gelatin in 4 of my medications, including Zyrtec, Benadryl, Omeprazole, and Melatonin. At that time, I wrote this diary entry:<br />
<br />
"My tiny world keeps shrinking. The torture of daily existence keeps getting worse. I'm tired of pretending I'm not deeply depressed to protect others when I have been for so long. Tired of pretending to be strong or happy when I am irrevocably broken and hurting all the time. I can't see my life decline for so many years and just pretend that I don't see it. I can't pretend that sitting alone in a condo watching TV and trying not to think about anything is a life. I can't pretend that I am okay with never being a mom. I can't watch a friend dying an agonizing death from this disease when hers is so similar to mine and pretend that it couldn't be me, that it won't be me. I can't pretend that I'm strong enough to go on without my Wilma when she was my baby/soulmate/reason for getting up. I can't pretend that I am independent and strong when I am not able to be an adequate life partner to my husband. None of it is okay. I can't pretend that I am not this depressed so that others will worry about me less or take me more seriously in terms of my illness. I don't know how to keep tracking my triggers and symptoms and managing my health and scheduling appointments and trying new things and believing that anyone can help me, that there's any point besides looking like I tried. But I hate myself for not being strong enough. I hate that my weakness keeps making my mom spend her days crying and makes my husband dread home. I need to be strong, but I don't know how, and I don't know how to fake it anymore.<br />
<br />
I don't even know how to respond to messages of encouragement. I can't fake it. Yeah, this is one phase. Life will change. It won't stay this bad. Meditate. I know. I do. Get therapy? Yeah, I know. I don't feel like it. I don't have any more of myself to give. It is taking everything I've got to keep eating, brushing my teeth...that's about it.<br />
<br />
I don't mean to have a pity party. I know it could be worse. I do have gratitude. I'm just tired of looking for things to be grateful for right now."<br />
<br />
So, the good news is that that intensity of depression did calm down. Getting off of anti-histamines after so long can really affect your brain. All this time, I was carefully tracking triggers and symptoms as best as I could. So I determined that the gelatin was causing me a flare up of all symptoms, including itching, allergy symptoms (ironic), diarrhea, and most prominently, the severe constant shortness of breath. My POTS had become so much worse, and I could pass out just from talking. My lips were white all the time. That actually vanished when I stopped taking those medicines, despite my mast cell disease being unmedicated. But I also determined I was reacting to my nightly potato chips. They had begun causing overnight diarrhea and severe itching. I did not realize at the time just how much I was relying on those calories! This brought me down to five safe foods plus almond milk in my diet. But there's also the looming threat of losing food #5 since my cereal was discontinued, and I am nearly out of my stock of expired cereal.<br />
<br />
I then began reacting to my Miralax, which I have been taking for half my life. That was a rough one, because I have not found an adequate replacement for having normal bowel movements. But unfortunately, it was causing worsened insomnia to the point of staying awake until 7:00 AM some nights. I was also getting a big adrenaline rush from it, hot flashes, and a pounding heart. I have experimented with different forms of magnesium as a replacement. I am still working on this problem.<br />
<br />
So, I did a trial of compounded Benadryl. I took the capsules as the doctor ordered, hypromellose capsules (which I know I tolerate) with microcrystalline cellulose as a filler. It did not go well for me. It caused severe burning in my esophagus and throughout my torso. It also caused me to feel very agitated and paradoxically worsened my allergy symptoms. So that was trash. It is possible to react to some cellulose and not others since there are various sources. So this is basically a wash for me.<br />
<br />
In early December, I got a cold with a fever around 100. (I run low normally, so this is a low grade fever for me.) Also in December, I was having to experiment with different laxatives and do trials of different cereals to replace my discontinued cereal. I also trialed rice flour as a potential safe filler for compounded meds. Nothing went well.<br />
<br />
I tried the reformulated Morning O's cereal first. The only ingredient change was the rice flour had been changed out for wheat starch. It tasted a bit grosser to me, but I barely noticed the change and didn't expect to feel much change. It ended up being a cumulative reaction. It started with skin crawling/waves of goosebumps, diarrhea after each meal, leading to a late night hypomanic state and not being able to sleep until most people wake up for the day. I was increasingly agitated and anxious. My heart began pounding after all food I ate. So, it was a fail. That hypomanic state is how I know a trial has definitely failed.<br />
<br />
The next one I tried was organic oat flakes. These had one problematic ingredient (fruit juice). Otherwise, I really thought they could be safe for me. It was actually a really delicious cereal (compared to everything I normally eat), and it would have been such a good addition to my diet. I believe the problem was the fiber content. It triggered my gastroparesis so badly. Fullness and bloating and severe heartburn lasting for many hours after a single serving. I kept decreasing the portion, but I couldn't decrease it enough to avoid those symptoms. And I wasn't able to eat much other food in a day.<br />
<br />
That was around my birthday. Around this time, I noticed that my clothes were all falling off of me. I finally got on a scale and learned that I have lost significant weight. MCAS causing varying levels of swelling from day to day as well as GI irregularity and bladder retention makes my weight fluctuate, but it has ranged from 94-101 lbs in the last couple weeks. This is very concerning, and I am doing everything I can to improve the situation. That puts my BMI under 16 some days. I swear to you, I have thought of everything, and I am trying everything.<br />
<br />
Then, just for fun, I got sick again for New Year's Eve. Another cold. Another low grade fever. The fever causes heart pounding and insomnia and generally angry mast cells. So it's been rough since then.<br />
<br />
I have kept trialing foods. Plain oatmeal was a failure, also due to digestibility. Nothing goes down easily compared to my safe cereal, my organic Toasted Oats with a very specific recipe. I am still eating it between trials, and it calms my whole system down on those days. I am down to my last few boxes.<br />
<br />
I came up with a biscuit recipe to try with oat flour and olive oil and almond milk. Unfortunately, I included cream of tartar in the recipe. I believe that has been the flaw for me, leading to me experiencing the pounding heart and random burning and now a very manic night. So, I can ask my mom to remake the recipe without the cream of tartar. I don't know why I even included it to begin with. I customized the recipe from a few others that I put together. I think omitting it could be the key for me.<br />
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So, that brings us up to today. My immune system is a wreck, so I still have a fever, and the cold symptoms have been really severe. I've reached a ridiculous point where my body temperature is consistently higher than my weight. Yikes. In addition, I got a yeast infection down below that is not going away with OTC treatment. Really frustrating and scary. I haven't had to see a doctor in quite a few months, so I am really dreading making my situation any worse than it already is by going in my most scented doctor's office. Ugh. I haven't actually gone inside anywhere in many months. Just my condo. I really hope I can avoid that appointment right now. I may even try a yogurt suppository before resorting to going in. (Although I am very overdue for my exam, so I can't put it off forever if I want to continue my birth control. Also, I've had breakthrough bleeding each time I have a fever, plus ovary pain at times, in addition to my ongoing yeast infection--or what I assume is a yeast infection.)<br />
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The good news, I guess, is that I am not in such a deep depression at this point. Between trials, my system is not stuck on high alert anymore. I am also keeping busy doing piano arrangements. I learned about a website that obtains the copyrights to many, many popular songs. So I have been busy writing arrangements. I am not selling much yet, but I'm hoping that will come with time. It has been keeping my mind busy so I can't dwell too much on anything. I suppose it's emotional avoidance, but I could use a break from all that emotion anyway!<br />
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Sorry for another long essay. I have just been unable to write/think or been busy distracting myself.<br />
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I will end with the note I wrote on Thanksgiving:<br />
"I am grateful for those in my life that try their best for me, even when their best isn't good enough. I am grateful for those who still care even though I'm not the same and even if I can't see them anymore. I may be sad and alone and crying now, but I am still grateful for these things."<br />
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^^^This was written on Tuesday night. It's now Friday night, and I haven't shared my post yet. So I've already got some additions:<br />
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My emotions are complicated these days. I do get severe emotional breakdowns that can be extreme and immediate after particularly intense exposures. Usually, my affect is blunted during the day, but my feelings come out at night, when I am less foggy. But generally, I actually suppress emotional expression (and suffer extreme brain fog/fatigue/apathy) throughout long reactions, so just as things start calming down, I have the total breakdown. (kind of like...How is this my life? How can I keep living like this? How can I keep suffering this much?) There tends to be a degree of suicidal ideation.<br />
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Sleep disturbance is a huge problem for me. My reactions to interrupted sleep are so severe. That is when I go into sympathetic overdive. Heart pounding, startling easily, definitely jittery, but also head pressure, brain fog, malaise, nausea, gastroparesis, and flu-like symptoms. I will usually be very cold. I also tend to feel very anxious the next day or longer. I am also prone to develop trauma responses at this time, as I learned this past fall.<br />
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It is why I had difficulty caring for my elderly dog with dementia near the end and why I cannot get another dog, despite my heartbreak. Even if I could find that magical dog with very low energy and that I'm not allergic to, I cannot tolerate sleep disturbances at all. I become overly reactive and more prone to new sensitivities as well. No dog would let me sleep the ridiculous hours I sleep these days.<br />
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It is absolutely terrifying rereading this post and realizing just how rapidly I have been developing new intolerances. The weight loss is scary. The progression is scary. My immune system is obviously a wreck and has been since August 31, when I came down with a horrible flu. My temperature was 103. My body pain overnight was a 10 for three wretched, insomniac nights. (Thanks, mast cells for amplifying an already rough situation.) I had that infection (fever, aches, and a cough) for an entire month. Then, I got another one at the beginning of December and another at the beginning of January. Those have been basically head colds, but I get fevers and amplified symptoms to even a basic cold virus. I have been in near total isolation during this time. My loved ones get flu shots and avoid me when they are sick. I should not keep getting sick. But this is why they call it an immune dysfunction. Here's an article explaining why my body reacts so badly to infections: <a href="https://www.mastattack.org/2015/03/allergic-to-infections-how-bacteria-viruses-and-fungi-activate-mast-cells/">https://www.mastattack.org/2015/03/allergic-to-infections-how-bacteria-viruses-and-fungi-activate-mast-cells/</a>.)<br />
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During my September infection, I developed severe breakthrough bleeding and cramping that was not suppressed by my continuous birth control. So I allowed my body to have a period. Came to learn that I am allergic to feminine hygiene products now. And I think I have had irritation since then that progressed with each infection. Initially, about 10 days ago, it was pretty clearly a yeast infection. And it responded to Clotrimazole, but only partially. I am on my third course of Clotrimazole, and while I don't have much daytime irritation, I do get a lot at night time. (Here's a fun article on the circadian rhythm of mast cells, explaining why all of my symptoms get so much worse overnight and why I can't sleep during normal human hours: <a href="https://www.mastattack.org/2015/04/circadian-rhythm-of-mast-cells/">https://www.mastattack.org/2015/04/circadian-rhythm-of-mast-cells/</a>.) I have the worst of my itching and histamine symptoms overnight, which often prevents sleep until nearly sunrise.<br />
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So what do I do about this yeast infection? Could it have evolved into bacterial vaginitis? Just treating the yeast with the OTC cream is flaring up my mast cells. I don't know what other treatment I could even tolerate. Should I try to schedule an e-visit with a random practitioner since this is a pretty generic problem, or do my complicating factors make that pointless? Do I need to try to get in with my gynecologist this week (in his very scented office)? Can I possibly risk that when my health and well-being are so precarious? When I am desperately trying to find a new food? Should I try less conventional methods like yogurt suppositories or boric acid suppositories? I have no idea how my body would react. Is there any chance that this is just another way of my body displaying mast cell activation that is amplified overnight, and there is no actual problem remaining?<br />
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I am scared that my attempts at replacing my dwindling cereal supply have all failed. And honestly, these food trials are just straining my system more and making me more reactive. But if I weigh this little while eating cereal (at least 3 servings a day, probably 4), what on earth would happen to me if I could no longer eat cereal? I still have a list of foods to try and grocery bags full of options. It is just so much to put my body through. And I would really like to maintain oat as a staple food. But unless it's in that specific cereal recipe, I haven't found a way to tolerate it yet.<br />
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I feel like I am reacting to the pure Milk of Magnesia I'm trying as well. It causes burning inside, at the least. So did the pure magnesium powder I tried. It makes my mouth and chest feel raw. And it absolutely does not make me regular. Did I really have to lose Miralax? It worked so well for me for so long with no worries of extreme urgency or total failure to do anything.<br />
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With all this flaring, as of today, I reacted to all digestion. As soon as I start eating, I react. That makes it very difficult to try a new food if you don't have any days with a baseline level of symptoms. The weather is really not helping me either, contributing to migraines and a stuporous state.<br />
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It's also very scary to know that I have some trips out of the home coming up:<br />
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I have to see my psychiatrist in February.<br />
I have to see my mast cell immunologist in March. (Although she has been on an extended medical leave, so I have to keep my fingers crossed that this appointment actually happens. Even though she hasn't been able to help me yet, I would be truly on my own without her.)<br />
I have to reschedule my autonomic neurologist, since I am also scheduled to see his PA in February. I am hoping to put it off a few months to keep appointments spread out and avoid the disaster of March 2019 (when I lost so many safe foods and meds, including peanut butter and butter!)<br />
I clearly need to see my gynecologist, but I don't know when to fit it in.<br />
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These are all annual visits. That is all I have. I just cannot risk any more appointments than this. But even this much is a risk. I got a new respirator that will hypothetically be a bit more helpful than my current one, but I'm waiting for it to air out its initial smell. I don't know when I will be able to use it.<br />
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Well, I had a lot of worries to get out, so hopefully my mind can now calm down for the night. I am actually extremely fatigued. My face feels heavy--not that I could sleep yet if I tried. But I have obviously had a lot on my mind. I've just been suppressing it by keeping busy, I guess.<br />
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Thanks for reading. Thanks for caring.Carolyn Medranohttp://www.blogger.com/profile/02811093427920453122noreply@blogger.comtag:blogger.com,1999:blog-833972720679789479.post-70964247436183612212019-08-26T23:48:00.000-05:002019-08-27T01:00:12.708-05:00Dark TimesSo, this post is mostly a compilation of my late-night writings to myself or in support groups. It was the only way I would be able to get anything together with this degree of cognitive impairment. Unfortunately, it's been a very depressive time, so a lot of these are very dark thoughts. I don't even know if I should share, but I guess I will for those wanting to know what's up.<br />
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Last time, I posted that I knew things could get worse, and I was right. Most of the developments in my life have been personal family developments that I wouldn't publish to the web. But family strife has certainly put extra strain on everything, especially my mental health, which of course impacts my physical health.<br />
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We developed a new problem at my mom's house. In late July, window repairs needed to be done for dry rot outside around the windows. Since it was outside work, I wasn't too worried, although all repairs are risky. Well, it's been a disaster for me. I've been to the house three times since the repairs. The first time was two days after, and I walked in and walked right back out. It felt like I was inside a bottle of nail polish. Since I left so quickly, I didn't suffer ill effects that time.<br />
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A week later, I tried again to visit. I stayed about 20 minutes that time, even though I still detected the fumes. The problem is, I smell them at first, but then I seem to habituate to the scent, so I can't tell just how sick it will make me. I have to go by symptoms. So, while in the house, I developed pressure and pain in my face and burning eyes. By the time we got to the car, it was screaming, head-exploding pain. That went on for hours that night. Just screaming and crying in bed while holding my head. I also had vertigo, nausea, and dystonia (body contorting in muscle contractures). It was absolutely horrendous. And with a reaction like that, you know the whole cascade is coming, and the symptoms will last weeks. So in addition to persistent head/facial pain and lack of balance, the following week brought itching burning red swollen eyes, itching sinuses, raw throat, excess mucus, diarrhea, insomnia, heart palpitations/racing, burning torso/crotch, and burning chest. Absolute misery. And yes, there were other triggers along the way that could have been making it worse, but it's impossible to know.<br />
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Two weeks later, I had had enough of the near total isolation, so I tried another visit. I spent time with each puppy inside the house and didn't think much about the scent. But after about 12 minutes, I knew I needed to leave. I had instant facial pressure and pain, vertigo, urgent diarrhea, and excessive urination with bladder/urethra pain. All of that happened right after exposure. The flared-up bladder still seems to be going on a week later, but not as bad as the first day, when I peed seemingly gallons and became very dehydrated and listless. I've also dealt with general itching and burning all around, along with persistent facial pain.<br />
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Again, there have been other triggers along the way. The weather has been great some days but terrible others. I was requiring extra Zyrtec for a seeming seasonal flare up of typical allergy symptoms. I was also on 3-5 Benadryl a day due to the severity of the symptoms. But the extra Zyrtec and Benadryl messed with my digestion by slowing it down too much. Fortunately, I seem to be okay back on my regular dose (which is still double a normal dose, but normal for mast cell disease patients). I also tried some allergy eye drops since my eyes have been so irritated, but I ended up with a mass of symptoms just from the eye drops. Stupid benzalkonium chloride is the likely culprit. It's a disinfectant used as a preservative that my body cannot stand! (Also used in hospitals a lot, contributing to them being unsafe places for me.) So there were overlapping reactions, but the clear-cut symptoms from the Zaditor eye drops were worsened eye redness and irritation but also a racing/pounding heart overnight with insomnia and diarrhea. That cleared up as soon as I stopped the eye drops. So frustrating and never ending to react to the whole world. (I just found this article on this preservative potentially causing and worsening corneal diseases. Wow! I've been on allergy eye drops since middle school. <a href="https://www.pharmacytimes.com/resource-centers/eye-care/eye-catching-study-the-truth-about-benzalkonium-chloride">https://www.pharmacytimes.com/resource-centers/eye-care/eye-catching-study-the-truth-about-benzalkonium-chloride</a>)<br />
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So, I have been coping with all of these symptoms almost entirely alone at the condo, because my safe second home, where I spend more than half my time usually, is causing most of this trouble for me. But the endless days alone are very difficult on me emotionally. I miss my Wilma dreadfully. I am coping with other personal struggles. I am drowning right now. The depression is so heavy. I am scared. Many days, I feel completely numb and braindead all day. It can take reaching 12:00 AM for the tears to fall and reality to really seem real and to be able to turn my thoughts into words.<br />
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Chronic illness comes with a cycle of grief and acceptance. It is perpetual. However, I believe I went through the worst of the grieving around age 19-22, when I was an absolute emotional wreck at all times. I didn't know what the future would hold for me, but I knew life would never be the same. I knew I had lost so much. And it took years of grieving to deal with that. And it came back again after each surgery failed to produce the desired results. The grief still comes back time and time again as my illness requires more and more acceptance. But I want to believe that the worst of it is over. I certainly hold no expectations of a normal life, so there is some peace with that acceptance. Nonetheless, I am in a time of grieving yet again. Grieving how my illness has affected my brain. Grieving how it hurts those I love. Grieving the repeated trauma of severe reactions and the lack of accessible medical care.<br />
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There's a topic that comes up in support groups, and that is the idea of not being defined by your illness. The reality is that we are shaped by our experiences, and my illnesses have such major lifestyle limitations plus cognitive impairments, controlling my experiences over many years, that they have absolutely shaped my personality.<br />
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It used to be so important to me to have an identity outside of illness. But I'm afraid it's long past that point. Yes, I care about other things. I care deeply about people and animals. But my illness rules all. It dominates everything. I cannot be separated from my illness when it is this pervasive, when it has taken over every corner of my life, how I live every moment. It controls me. I don't get to make decisions or have preferences. I don't get to choose my hobbies or have passions. I don't get to choose who I spend time with or how I spend my days. I don't have much say over how it affects my relationships. I try, and I have tried, but I always lose. I have fought battle after battle, but there is no point fighting. It's not an illness I can beat. I'm too smart to still believe that after half a lifetime of the same thoughts. It's not defeat, just some kind of forced acceptance. Literally all I can do is keep stepping forward. Keep avoiding most risks while taking unavoidable ones. Keep listening to my body and responding as I have to. I am a slave. I am my illness.<br />
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So to truly be on my side, you have to be against the things that make me sicker, even when it's hard, even when it's inconvenient, even when it's not your preference. Because I don't get to have a preference. No wants, no desires, no dreams. Only what my body needs.<br />
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So what is the worst thing about living with mast cell disease for me?<br />
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The near total isolation and loss of family and friends, even those that make an effort. I am too difficult to accommodate because nowhere and practically no one is safe for me.<br />
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But I certainly fear the loss of food after exposures too. As well as the lack of medicines that I tolerate, making improvement impossible.<br />
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I am terrified of aging and not having any meds that comfort or treat the conditions associated with that. I watch others age, and they absolutely could not get by without antibiotics and pain meds and sedatives. That is how our country and most of the world deals with aging and dying. We provide comfort care. But nothing can provide me with comfort. Not for many years now. Not since I stopped tolerating so many meds (that also allowed improved function). I believe in Death with Dignity and hope this will be an option for me when the time comes.<br />
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I am very scared that my body cannot tolerate procedures or surgeries or even most tests, so medical care is basically inaccessible to me. And I have quite a few conditions that generally require treatment! So it is quite scary to know that I am basically untreatable, whatever comes up. I will have to live with these craptastic knees for the rest of my life. And my spine is not allowed to become any more unstable because that treatment is unavailable too. Unfortunately, spinal instability in EDS is known to be progressive.<br />
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I fear that I am already on the maximum dose of the sedatives that I tolerate. And with my completely lost ability to sleep, that is a dreadful feeling.<br />
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I fear having only one safe brand of each medication I depend on because they won't be available forever, and I can't get by without them. But other brands cause me severe symptoms. This has already been problematic time and time again for years and will never stop being problematic.<br />
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I am paralyzed at the thought of life when my mom is no longer around because she is my main emotional and practical support person and the only way I survive day to day.<br />
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I fear that my marriage cannot survive me being this sick much longer.<br />
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The massive untreated pain is up there with the worst parts of this disease too. It's hard to choose what is the worst.<br />
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So, due to the isolation of my single safe home situation as well as the pleasant weather recently, I have attempted a couple very cautious outdoor visits. By cautious, I mean that I can't get close to people, and I have to carefully find a place with open space and no smoke or laundry fumes in the air. It is a huge challenge and almost never possible. These visits have been moderately successful. I suffer from the sun, and I suffer severe pain from standing. And of course, I suffer from irritants in the air. I need to remember my wheelchair if I try this again. After a visit, I suffer complete and total exhaustion, sometimes worse than others. But it has broken my total isolation a little bit. I'm not ready to try again any time soon. I am worn out to the bone.<br />
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And yet again, I know that things could be worse. I am not technically bedbound, although the vast majority of my time is spent in bed or the recliner. I am almost entirely self-sufficient. And I have been surprisingly safe in my condo most of this time. I am very grateful for that. I also have love and support. So many don't have these things, and unfortunately, I have seen several in my support communities lose their battles recently. Without love and support, these challenges truly are insurmountable. Even with it, not every battle can be won.<br />
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So, this was a super dark post. I am so grateful to not be alone, even though I do spend so much of my time alone. I am considering virtual or online therapy to have some extra support getting through these dark times. But my cognitive impairment and frequent severe reactions make even that seem like an extra obligation that I am not equipped to handle.<br />
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So, it's been another rough spell. Aren't they all? I will always remember that it could get worse, so I am still grateful for the things I have right now. Right this moment. I am so grateful that the symptoms I get during a horrific reaction, while traumatizing, are not the totality of my existence. I am grateful that even though I am never pain and symptom free, I have times that are easier than others. I am grateful for moments of peace. I am grateful when the level of suffering reduces. I am incredibly grateful for each and every one of my eight safe foods, which seem to be sustaining me. I think my metabolism must have slowed a bit on the lower calorie diet because I don't seem as scary skinny as I did a month ago (although I haven't weighed myself). I am so grateful that my husband helps to keep my only safe space as safe as it can be for me. I am grateful for my mom's absolutely unwavering, unconditional love and support. And I am so grateful for all those that love and care and reach out.Carolyn Medranohttp://www.blogger.com/profile/02811093427920453122noreply@blogger.comtag:blogger.com,1999:blog-833972720679789479.post-40375247892086272822019-07-10T00:14:00.001-05:002019-07-10T01:35:57.807-05:00When it rains...I have a ton to write about, but honestly, I will forget most of it due to more pressing issues.<br />
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So, there has been a problem for me at my mom's house for a while, my safest house where I spend most weekdays. But it got worse and worse during our very wet weather in May and June. There was a smell coming out of the fireplace, and I was having more and more severe reactions to it. Severe itching, pounding heart, passing out, severe insomnia, burning pain. So, I finally realized I could no longer spend the majority of my time in the family room where the fireplace is. During this same time, it seems I became sensitized to the smell of certain mold on windowsills. So, we've been trying to deal with the situation. Thankfully, my folks were able to make my bedroom safe for me again just by cleaning up the window sills with a product called Concrobium. Highly recommended for the chemically sensitive and really anyone dealing with simple, very small mold problems. We will keep it safe by making sure the blinds are open all day, every day so nothing has room to grow. The bedroom is safe for me again! But the house has not been. Just leaving the bedroom brings on tons of symptoms, and the longer I stay, the worse they get.<br />
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And that's just been one ongoing issue.<br />
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Another is that in the beginning of June, I am fairly certain I herniated or ruptured the disc below my fusion. Level C4-C5. I say fairly certain because I do not have a primary care doctor, and I am unable to receive medical care at this time. After my huge losses in March, I have not gained back any food or weight, and I am even more sensitized to my environment. Permanent losses just by going to doctor's offices. Getting a real diagnosis and treatment isn't really an option for me. It was already bulging, and we know that being below the fusion puts a lot of stress on the area. Also, the location of the pain going into my shoulder and deltoid muscle line up perfectly with a C4-5 disc injury. This injury caused level 10 pain. I do NOT say this lightly. When I was hospitalized in 2017 for status migrainosus, I labeled that level 7 pain. When I had all pain meds removed two days after my last fusion, I called that level 8 pain. So I do not say level 10 pain lightly at all. I can't remember pain this bad. The only thing that comes close is certain episodes of trigeminal neuralgia from fragrance exposures and severe burning neuropathy throughout my body as an adverse reaction to an IV medication.<br />
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So I dealt with the injury the best I could. First, I absolutely could not sleep through this pain. I was up all night moaning and crying with heart pounding for multiple nights. (And remember-my body still forgot how to sleep during the day. So there was no sleep to be had.) And just when I thought it was healing, it got re-triggered by the tiniest things, like my posture while watching a TV show being slightly off. It was terrifying. I had to take measures to avoid doing anything to strain my neck at all, trying to maintain perfect neutral posture every moment. I used ice and heat until my skin could no longer handle ice and heat due to mast cell activation of the skin around the injury. I also decided I had to quit doing my job as a transcriptionist. Anything that puts strain on the neck is a risk. Typing this right now feels risky. I also had to give up jigsaw puzzles, which required me to look down. None of that is allowed anymore. I absolutely cannot risk injuring again. I rested a lot. I could not lift anything without worsening the pain. My mom took over a lot of the load. She helped me cook and did my laundry for me for a month. After about a month, when the pain with every movement had reduced a bit, I began some of the lightest PT exercises I could come up with for core strength. I have had a lot of PT, and I know how to Google, so I was able to remember a few of the common first exercises. Gradually, the pain has improved a lot. I am wearing my rigid and soft neck collars more often and still being extremely cautious about my posture. I am truly terrified of this happening again.<br />
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Unfortunately, pain triggers mast cells to degranulate. Lack of sleep causes mast cells to degranulate. And degranulation causes a million more symptoms that make your life even more miserable, including more pain and insomnia. Ugh. So my body was in a rough state.<br />
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Then, the shaky floor I was standing on just gave out on me. My precious girl, Wilma, has been suffering from blindness, deafness, and dementia for the last two years, especially since last August, when she seemingly reacted very badly to a Heartguard pill and ended up with severe diarrhea and neurological symptoms. She has given me plenty of scares in our four years together. Really serious scares where she wouldn't eat for a week at a time and where she seemed to be unconscious and could not be roused. Apparent mini stroke episodes. A severe pain condition that wouldn't allow her to be touched. But starting last August, the decline became more pronounced. Feeding became nearly impossible. I changed her food quite a few times. I fed her by hand. She lost bladder control most of the time. But we were still plugging along.<br />
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In the last couple of months, it all got so much worse. She paced at night incessantly, often leading to repeated crying episodes and getting stuck in strange places. She became inconsolable and extremely distressed for quite a few of the overnight hours. We often stayed up until 4:00 or 5:00 AM together, me just trying to comfort her. She needed help drinking water, either by syringe or by forcing her chin into the water and holding it there because she couldn't figure out how to drink and would just lap at the air.<br />
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But finally, last week, I decided that the poor girl had had enough. We had been through a long list of supplements and medications, each of which helped for a week or two. Her meds were way more expensive and numerous than mine. And if they had helped her to feel calm at night and not cry so much of the night, I would have been happy to keep caring for her that way. But she wasn't happy anymore. She was in visible pain when she walked. She was either asleep or in extreme distress. I knew it was time. I had 5 days to say goodbye before her appointment. I savored every lucid moment she had. I love that girl more than I can express.<br />
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She was not a family pet. She was my emotional support companion. The only dog that has ever been just mine. The only dog that thought I was her mama. In my tiny world, stuck inside, there are three possible people around, two family dogs, and one Wilma--the only one that was with me all the time. Only Wilma was my constant. We both preferred it when we were in contact. There was no outside world for us. We went back and forth between the two houses together. But always together.<br />
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Grief is something I understand and I know how to do. I know how to let myself feel it in waves as it comes, and I know when it becomes too much and I need to try to think about something else. The problem is, with my crazy mast cells, that amount of hysterical crying and screaming and physical and emotional stress triggered a severe flare (as if I have ever not been in a flare--a worse flare, I guess). Blood pressure 70/40. Repeated loss of consciousness. Pain in my head and face level 9. Diarrhea and dehydration. More hair and weight loss. Grief is horrible but necessary, but the strain on my body is enormous.<br />
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I do not believe in supernatural things or an afterlife. I believe my little girl is gone. I also do not see how I could care for another dog at my current level of functioning. I can sure love our family dogs. But Wilma let me sleep until noon without making a mess or a peep. That is not a common quality in an animal! I believe she was a very unique little girl who couldn't have been a better fit with me. She was so low maintenance most of the time. She required so little daytime energy from me, which is perfect because I have so little to give most of the time. We truly belonged together.<br />
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I only know that this grief is unlike the grief I have experienced over our beloved family pets that have meant so much to me in the past. This is a whole other level for me.<br />
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Finally, we get to today. There are more issues I am brushing past because my neck is beginning to hurt, and I can't get it all down, but I need to get this out. So today, we got the much needed chimney repair done. We are all really hoping that this resolves the problem of trapped moisture and "bad air" coming into the house. It was a major repair job that was expensive and necessary. Unfortunately, in order to protect from future moisture buildup, a water-proofer was required. The smell of that stuff filled every corner of that house so fast. It was terrifying. It smelled a lot like the varnish that triggered me so badly in the apartment we had to leave. There was no question. I had to get out and fast. I put on my respirator and packed up as quickly as I could. I returned back to my condo completely alone with no one around. Another unfortunate thing is that my husband has been out of the country and will be for several more days.<br />
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I do not do well with loneliness. The reason I call her my emotional support companion is that, while she was not certified as an emotional support dog, I certainly qualify for one, and she certainly served that purpose. There was just no need to get her certified because I was allowed to house her. However, my major depressive disorder with suicidal ideation and history of self harm do qualify me. They have also made this loss even more profound. I have already spoken with a crisis line twice. I feel so lost and without purpose. (Although a part of me feels incredibly guilty to be relieved of the responsibility for someone else's well being at times.) My depressive symptoms are quite bad right now, as expected. Extreme sadness or total numbness/anhedonia. Suicidal ideation and thoughts of self harm do come back to me in times like this. They always have. It's like a default for my brain. But I am not currently at risk, so no need to sound any alarms. I am doing my best to stay afloat and let myself grieve as it comes. But my system cannot handle any more extremes. So I am alone at the condo, truly alone, and feeling a bunch of emotion that I don't know what to do with if I can't scream and cry. So I wrote it all out.<br />
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I cannot really write more or even proofread tonight because I cannot risk my neck in this position any longer.<br />
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I know things could get worse. They always can and usually do. So I am grateful for my safe space tonight. It is empty and too warm. But I am safe. I feel out of control, but I am safe. I don't know how much worse my symptoms will get tonight or when I will be able to calm down and sleep. I don't know how much more pain the night will bring. But I am doing my best. A lot of people are being there for me in the way that they can. I have had some great text and phone conversations that have helped me through the lonely nights and validated my feelings. Some nights, I just cocoon. I could barely move last night. Didn't have the energy for more than silent tears. But others, I need to let it out somehow. So there it is. Thank you for everyone who loves and cares for me, if only from afar. And thank you so much to those that are part of my tiny world. I can never thank you enough for being my whole world.Carolyn Medranohttp://www.blogger.com/profile/02811093427920453122noreply@blogger.comtag:blogger.com,1999:blog-833972720679789479.post-26450428456682389922019-05-06T23:18:00.001-05:002019-05-06T23:23:08.975-05:006 weeks later, and so much lostWell, I last posted six weeks ago after enduring many doctors' appointments and various chemical exposures. I believe there was one more exposure after that, which was a severe reaction to a dusting spray called Endust Free. It took some time to figure out what was wrong since it had no obvious scent, but I knew that something was wrong immediately. My reaction included feeling very cold and then burning all over, exploding head feeling, burning eyes, agitation, insomnia, pounding heart, and full body vibration. These symptoms lasted for two full days and nights. So that was March for me, and I have not been the same since.<br />
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Starting middle of March, when I visited with my brother, I developed new food reactions. It quickly escalated into a crisis that I have not gotten out of. I had nine safe foods prior to this: organic toasted oats cereal, almond milk, rice cakes, peanut butter, quinoa, carrots, broccoli, potato chips, and butter. I first developed a reaction to peanut butter. Soon after ingestion, I developed a runny nose, abdominal bloating and pain, a pounding heart with heart rate elevation followed by presyncope and reduced consciousness for up to three hours. Following the reduced consciousness, I developed facial burning, agitation, flushing, and a feverish feeling. The symptoms would pass, but they seemed too severe to continue eating peanut butter. In addition to the new food reaction, my baseline state also worsened. The burning inside got so bad it was reaching a level 8 late at night every night. My scent reactions began happening daily. My facial pain was reaching a level 8 most days as well.<br />
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So, my mast cells were constantly degranulating, and my condition was deteriorating. I was miserable. But I was also starving without peanut butter. I immediately started doing food trials, trying to find a replacement for peanut butter. I needed to replace the fat, protein, and calories in my diet since so much of it came from peanut butter! It was an absolutely key part of my diet and key to my well-being. I was able to digest it without much trouble, and I was able to get a good amount of calories in without causing too much fullness or GI distress. So, I tried similar foods first.<br />
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I tried Sunbutter the first day. It's like peanut butter, but it's made from sunflower seeds. This gave me bloating, nausea, and worst of all, the burning inside for 8 hours. Plus, I felt agitated and couldn't sleep. I also had vertigo and trigeminal pain, but that is most likely attributed to the weather. (It can be really hard to sort out!)<br />
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The next day, I tried just butter on my rice cakes. At least I would get fat and calories, right? And I could figure out a protein replacement later. Well, that actually went terribly, despite previously tolerating (much smaller amounts of) butter. I got burning inside for a few hours, but I also got really bloated and developed a very raw mouth. My whole mouth felt like it had been sandpapered. In the following days, I tried returning to my previous amount of butter, just melted into my veggies, but I got the raw mouth every time. So that's how I lost my next food!<br />
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I then tried a scrambled egg for two days. That was one of the last foods that I lost before my current diet, so I knew there was a chance of tolerating it. Unfortunately, it caused major bloating and itching, and the itching persisted overnight, messing with my sleep again.<br />
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Finally, I tried almond butter. This was the worst reaction yet, probably because my body was already on high alert from all the reactions. (I know it's super weird that I can drink almond milk, but please don't tell my body they're made from the same thing. Maybe it won't notice!) Anyway, I developed burning lips and crotch, runny/itchy nose, and I was awake until 5:00 AM with insomnia, agitation, and heart pounding.<br />
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At that point, my body was in full-on crisis mode. I couldn't handle anything. Just eating and drinking and moving made me worse. Every symptom I have went into high gear. I was suffering from agitation, burning pain, migraine pain, insomnia, pounding heart all night, and all the rest. So on April 1, I gave in and just started eating my dinner foods for lunch and dinner. I no longer had post-lunch symptoms besides some trouble digesting "real" food so early in the day. Basically, this diet increased my dietary fiber, and that was too much for my system to handle. So, I had to learn to puree my vegetables to try to ease the burden.<br />
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I also tried a peanut butter desensitization, eating just a teaspoon a day, every other day of homemade peanut butter. But when I escalated to two teaspoons in a day, symptoms were worse than ever before, so the desensitization not only failed, but actually made my sensitivity worse.<br />
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So I've been sticking with the food plan that got me out of full-on crisis for now. My safe foods are now: toasted oats cereal, almond milk, quinoa, pureed carrots and broccoli, and potato chips. I am hungry all the time. I dream of food. In just the first week, I lost two inches around my chest and my hips. A month later, I have lost three inches all around. My clothes hang off of me. I am decidedly underweight with an unhealthy BMI. (Although my stomach is often bloated, so it can be hard to see how bad it is.) And I don't know how to fix it. I have a few foods to try (brown rice protein powder, coconut oil, coconut butter, and hard-boiled eggs). But I am not stable enough to try anything new.<br />
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One week, my brand of almond milk wasn't available, so my husband bought my second choice, which has always been fine for me. Well guess what? Now, my body will not tolerate it. The only difference in ingredients seems to be sunflower lecithin, so it seems clear that I can no longer tolerate anything sunflower. It seems like I start reacting if I have too much of any one thing sometimes. But this just shows that I am still declining.<br />
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Plus, with the temperature rising and the neighbors starting grilling season, I am reacting constantly. I am often not safe anywhere. All it takes is one neighbor on the block grilling, and that tiny amount of smoke seeping into the house to ruin my week. Yes, week. Not day. Week. We're working on sealing up doors better, but nothing is perfect. And all scents are amplified in the heat. The smell of the asphalt in the parking lot, the smell of laundry that seeps in from my condo's hallway. Everything is stronger and suddenly a huge problem again. And this is not even dealing with air conditioning yet, which makes my condo mostly unlivable because whenever there is smoke, it blows it inside. Not to mention the bug bites that are coming to ruin more weeks of my life.<br />
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I also have a whole saga going on with prescriptions right now. Two of my three pharmacies, the ones that special order specific manufacturers for me, have told me that they will no longer be allowed to do that. It doesn't matter if my doctor specifies the medically-required manufacturer, somehow, because they are generics, not brand name drugs. So in any given month, probably sooner rather than later, I will be unable to refill my prescriptions. I have sought out other pharmacies and have leads on a few that might be more willing to order them. But I am totally at their mercy, and I have no idea when this will happen until I try to refill. So each medication could become a crisis of its own. I am totally powerless here.<br />
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In addition, the medicine that Dr. Tobin prescribed, Zyflo, was not available for compounding. Plus, I haven't been stable. So I have a bottle of the brand name stuff sitting here, but I haven't been able to try it. This is a $4,000 bottle of medicine. I got it for cheaper, but not cheap enough to actually refill monthly. But it really doesn't matter. I don't know when it will matter because I have no idea when I will try it. It seems like food trials are more important, but I would need to be less reactive first.<br />
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I also just seriously cannot tolerate more symptoms above those I'm experiencing from the crazy weather changes and barometer messing with me. The pain in my head and face and joints has been unbearable. So I certainly can't risk making anything worse. My pain reaches an 8 most days, and my digestion has not normalized. I am usually bloated and feeling like my lower abdomen is stuffed while my stomach is suffering from intense hunger.<br />
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So for now, I seem to keep shrinking away and feeling like I'm starving and unable to try to fix it at all. All I can do is survive day by day.<br />
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Wilma is definitely still struggling, but we have her on a few new supplements that seem to be helping with her nighttime psychosis from dementia. The biggest help has been CBD, which is also helping her appetite. She still looks skeletal, but that should change if her appetite stays up. This symptom of hers is definitely interfering with my sleep, which doesn't help anything. But hopefully, we'll keep finding ways to ease her troubles.<br />
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I'm sure so much more has happened, but I am not hypomanic how I was last time I wrote, so I don't have racing thoughts propelling me forward.<br />
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So, a few assorted thoughts, and then I'll go.<br />
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Someone in my support group asked what you wish people new about your chemical sensitivities. My answer was this: "My biggest one is that the level of chemical sensitivity can be so much more than you could imagine. The amount of a trigger can be undetectable but still debilitating. The other thing is that I don't just suffer while being exposed to a trigger. I can suffer for weeks. And if it's bad enough, I may never get back to my previous baseline. I may be permanently damaged by some brief exposure."<br />
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Then, I wrote this about being so reluctant to try anything new: "As long as I avoid ALL triggers: food, environments, medicines, exertion, people; as long as I stick to my 3 safe people and my 7 safe foods and my 2 safe-ish home environments, I can just barely tolerate being alive. But every time I leave the house (including going to doctors), or try a new food or a new medicine or visit with a new person, I end up triggering a progression of my disease that I often don't recover from. I lose safe foods and medicines and react more to my environment. So I am officially terrified to change anything for fear that my daily existence could get even worse. I have just seen myself get worse so many times from so many things, and I cannot bear the thought of existing any worse than this. I am so afraid to rock the boat."<br />
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Finally, there has been a lot of talk lately about "brain retraining" and stuff like that in mast cell and chemical sensitivity groups. It is thankfully a banned topic in some of them. It's basically teaching your body not to react to triggers through reprogramming techniques. I truly do not believe in this approach to my condition for so many reasons. First, exposing myself to triggers would just allow me to progress even further by exposing myself to danger. Even in small doses, my reactions tend to progress with each exposure. Symptoms of anxiety related to exposures could improve. The propaganda around these often very expensive programs is really huge, so there are miracle cure stories out there, plenty of them.<br />
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For me personally, I don't believe in this treatment. I am thankful that I don't suffer much anxiety on a day-to-day basis. I'm in too much of a fog to feel anxious. I even forget that I have tried a new food or a new medicine until I am already reacting. So I don't see how my mind could be creating that response. I also react to unknown triggers so much of the time and have to figure out what the trigger could be. Then later, I identify it, and it all makes sense. And these are reliable reactions, replicable. I didn't even know there was a trigger, so I know my mind didn't create that reaction. It also makes perfect sense to feel anxious when returning to a situation that has caused immense suffering in the past. That's normal. And I am pretty good at taming my nerves and just taking things as they come. Many years ago, early on in illness, I questioned myself a lot, basically blaming myself for my symptoms...because doctors didn't know what was wrong, and they blamed me. I was young and trusting and didn't know better, but they still damaged my ability to trust. It was <a href="https://www.health.com/mind-body/is-your-doctor-gaslighting-you" target="_blank">medical gaslighting</a> for sure. It has taken many years to get to the point of trusting myself again. I now know to take my body's cues seriously. I do get bouts of anxiety out of nowhere, but I know that is a sign of a reaction starting, not a sign that I'm imagining a reaction.<br />
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I am very pro-mental health care by licensed professionals. I have been treated for depression for most of my life. I previously suffered generalized anxiety, and I am so grateful to not currently have that burden. But I believe in medicine, and I believe in therapy. What I don't believe in is programs made up by non-professionals and sold as snake oil to the masses of suffering people. If someone truly believes that their anxiety is the driving force, and their thoughts are causing their symptoms, then they should seek out treatment for anxiety. And maybe these programs that involve walking in circles while repeating mantras and reciting comforting statements to yourself would be helpful for them. Who's to say? Anyone who is helped, I am so glad for them. But I don't approve of the way it is marketed and sold as a cure to all that ails you.<br />
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My mental health is stable. Just ask my actual doctors. They know my symptoms are real and driven by mast cells. I finally have ample laboratory evidence proving it. And I have expert doctors who attest to my conditions. So thankful to have reached the point that I have real, tangible evidence explaining every crazy thing my body puts me through. Obviously, I wish there were more solutions, but explanations are a good start. I even had my doctor recently write me a note to get out of jury duty, declaring that I am housebound due to illness. This is very real, and no one who knows me questions my sanity, thankfully. I feel so bad for those that are still going through the process of diagnosis and still seeking explanations and validation and being accused of faking it or being crazy. It happens way more than people realize. And I find that this kind of treatment is just another angle at toxic positivity and magical thinking. (Here's a great article on that issue: <a href="https://blogs.psychcentral.com/hidden-disabilities/2019/05/toxic-positivity-its-a-thing/">https://blogs.psychcentral.com/hidden-disabilities/2019/05/toxic-positivity-its-a-thing/</a>)<br />
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So, given all that I've been through, I don't have any doctor's appointments scheduled currently. I will need to keep seeing a few doctors annually, but I will avoid any more than that whenever possible. Only this degree of extreme isolation seems safe for me at this point. Very unfortunately, I need my annual exam with my gynecologist this month if I want to continue birth control pills that treat my PMDD and hormonal reactions. It's unavoidable, and very exposed, and it will make me very sick. I just hope I don't gain any new symptoms or lose any more foods. Have I mentioned? I am so hungry!!! But it is a difficult appointment because it is a scented office, and my skin will all be exposed. Skin exposure is so huge. A respirator can't help you with this. A recent study came out showing that most of carcinogen absorption from barbecue smoke actually comes through the skin, not through inhalation as previously assumed. Here's an article explaining that: <a href="https://www.medicalnewstoday.com/articles/321884.php">https://www.medicalnewstoday.com/articles/321884.php</a><br />
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I believe that this skin absorption thing can explain many chemical reactions, not just smoke. Your skin absorbs everything in the air, and then it is processed by your body and ends up in your bloodstream and your urine. That's how you can react even when wearing a respirator. (Although I still swear that plenty of smells get through my industrial respirator. Strong perfume is the main one.)<br />
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I am so sorry for the disjointed nature of this post. You can see how confusing it can be to live inside my brain. I hope you are all having a good spring. Stay safe. Don't start too many fires 😊. And if anyone knows how I can fill the Game of Thrones-sized hole that will show up in my life in two weeks, please let me know!Carolyn Medranohttp://www.blogger.com/profile/02811093427920453122noreply@blogger.comtag:blogger.com,1999:blog-833972720679789479.post-8062292011679841982019-03-19T23:41:00.000-05:002019-03-20T01:17:10.184-05:00Taking advantage of the hypomanic reactionTime is a strange thing when you live with constant sickness and pain. Everyone talks about time flying, and they can't believe it's already been a year or ten years since some milestone. Well, I can't really relate to that feeling at all. Since middle school, I have always dreamed of having a remote control that could fast forward through the bad parts. The problem is, there wouldn't be much left. (Yes. I know they made a movie about this.) It is just so difficult to see people building lives and moving forward, having kids, and watching their kids grow. I'm sure that would make time seem to fly. I'm sure it would make life seem more worthwhile too, more fulfilling, more meaningful. I mean, the only way in which I would want time to slow down is in the aging of loved ones. But I want to slow down aging, not time. Time is slow and torturous. I guess the saying, "Time flies when you're having fun," works in reverse as well. Time drags like hell when you never have fun.<br />
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And my life is really not fun. I try to find little snippets of fun or happiness or even joy and hold onto them, but they are so few and far between. It just feels like an endless uphill climb, or a downward spiral. It seems strange that going downhill and going uphill are both pretty bad things. Like, if an uphill battle ("a task that is very daunting from the outset and continues to be challenging" - <a href="https://idioms.thefreedictionary.com/an+uphill+battle">https://idioms.thefreedictionary.com/</a>) and a downward spiral ("a situation in which something continuously decreases or gets worse" - <a href="https://www.merriam-webster.com/dictionary/downward%20spiral">https://www.merriam-webster.com/</a>) are both really bad. You really don't want your life going either way. This suggests to me that many of us really desire stability. We desire homeostasis. And an unpredictable illness takes away any sense of ease or comfort in your situation.<br />
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Why so loquacious tonight? Well, I'm currently having a reaction that is causing over-stimulation. My brain is racing, and my speech is pressured. I feel so agitated. And that's all on top of the mind-blowing pain and burning. So I decided to write it out tonight while I actually have something to say. (Most of life is in a fog, so at least this brings things into focus for a bit.)<br />
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This last month has been hard. And whenever someone asks me how I'm doing, that's how I usually answer. It's the least pessimistic answer I can come up with that is still honest and genuine. But this last month really has been a challenge. Three hospital-based doctor's appointments in under a month. That's way too much outside exposure for my body to absorb and tolerate. But they needed to be done, each one of them.<br />
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First, I saw Dr. Barboi's PA. He is my autonomic neurologist that specializes in dysautonomia/POTS. But he is too busy to see follow-up cases anymore, so I saw his PA. She was nice and interested and pretty thorough. It was just an annual appointment so that I remain his patient. And I need to remain his patient because he understands my illness, and there may come a time that I really need his help. So, we were inside the hospital for two hours. I wore my respirator the whole time. This thing is ridiculous-looking, but it really does help me with one thing. It prevents the severe facial pain and headaches that I get whenever I'm in public. It's not perfect, but for that alone, it is worth it. The more I can prevent that pain, the less prone I am to the next trigger for the pain. So I can go longer without having any facial pain, sometimes a week or more at a time. Usually the weather or some unavoidable trigger ruins it, but at least I can avoid it when I go to the doctor. Unfortunately, I still suffer the rest of my symptoms for weeks following the appointment. I can only protect my trigeminal nerve, really.<br />
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Anyway, nothing in particular came out of this appointment. Honestly, it was the same as last year. Dr. Barboi wanted me to see Dr. Tobin and wanted me to try the chemo drug called Imatinib. I also got my handicapped placard renewed. That was it. But I have portal access to him for the next year, so that's worth a lot.<br />
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A week later, I had my long-awaited appointment with Dr. Tobin. This was quite an ordeal. It was a morning appointment in Oak Park. I don't do mornings. So I only got four hours of sleep the night before. I was a wreck. There was a wait inside a smelly waiting room. Even though I can't smell most things through the respirator, I can still literally taste the disinfectant smell in the air. The taste lasts all day. It's crazy, I know. Believe it or not. But it happens every time. And every hospital has that same disinfectant everywhere, filling the air. Anyway, this time was three hours inside the hospital wearing my respirator. I spent a long time talking through my history and my symptoms with the fellow that I saw. She was also very nice and interested and thorough. I felt that I explained everything pretty well.<br />
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Dr. Tobin came in at the end, and she definitely believes I have the right diagnosis. But she was not particularly optimistic about my treatment. Not hopeless, but not hopeful. I appreciate that actually. Don't get my hopes up so high just to be dashed again. Basically, she has a few ideas that haven't been tried yet (although certainly nothing novel to me--I know this stuff like the back of my hand). The conclusion of the appointment was that we were going to repeat some labs (I have gotten most of the results back. Same elevations in blood and urine indicative of a systemic mast cell activation disorder), and that we were going to trial a compounded medication that I haven't tried before. It is in the same class as Singulair (asthma medication), but a different drug. We will get it compounded to avoid fillers and start with a lower dose than usual. It won't necessarily make any big change in my condition. It almost certainly will not. But if for some reason I can tolerate it, we could start "chipping away" at my hyperactive mast cells. Basically, that's her approach, to keep trying things little by little and see if we can chip away at this illness that is wreaking havoc throughout my body.<br />
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The only problem that has come up is that so far, no compounding pharmacy has access to this drug. They are not able to compound it. So it may be a dead end. If it is, she had a few other ideas, but none that I'm especially excited about. Maybe a medicine for nerve pain, like Gabapentin. But I haven't had luck with it in the past. Lots of side effects for little to no relief. And it would do nothing to actually stabilize my crazy mast cells. Maybe aspirin (which doesn't seem smart long-term). Maybe regular IV fluids (which is hard on the veins). Maybe even IVIG treatment (but I don't really want to strengthen my immune system. I don't even get infections easily.)<br />
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A great thing that came out of this appointment is that Dr. Tobin and Dr. Barboi are now consulting together on my case. They may share ideas with one another. And those are two brains that I definitely want on my side. They both agreed that my burning pain I get, often in my torso, but also in my face, in my mouth, in my eyes, and in my crotch are a form of neuropathy. Not typical small fiber neuropathy or peripheral neuropathy, based on location, but still neuropathy. Atypical, as usual.<br />
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Those were the big appointments. And oh man, did I suffer for them. My list of symptoms in the two weeks following the appointment at Rush is a page long. To summarize, I had widespread burning, itching, deep cough, headache over my eyes, palpitations, body pain, nausea, bladder pain, tachycardia, diarrhea followed by constipation, a rash, hair loss, crawling skin, lethargy, brain fog, and gastroparesis. Those were the big ones. All because I spent time in a doctor's office. I was grateful that insomnia did not accompany this reaction, and neither did trigeminal pain. But it was still absolute misery.<br />
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And as usual, as soon as I start feeling like I could be getting back to homeostasis a couple weeks later, I had another appointment. The last one was just a check-in with my psychiatrist. It went fine. No changes in meds, like usual. Thankfully, he agreed that we can scale back to 6-month appointments instead of 3-month. Our insurance is not covering any of the visits, so it's a relief for more than one reason that I only have to go twice a year instead of four times a year as I have been. Too bad he's a resident, so they only stick around for a year or two before I have to switch again. I like him. I wish I could see more of him, but like most things in life, that's just not an option.<br />
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So, I had a horrible weekend following this appointment. The usual terribleness, with especially bad lethargy and brain fog. I was practically catatonic for a lot of the weekend. Then, Monday came, and I felt a bit like a human again. I actually felt pretty great for me. So, it was really a good time to seize on the chance for a trial visit with my brother. He and I are very close, but we have barely been able to see each other in the years since my mast cells lost their freaking minds. But he has put in enormous effort to be able to visit with me again. He has changed his entire routine. He uses all fragrance free products that I know are safe for me (because they are also used by either me or my mom or my husband or my stepdad--my safe people). He also freaking quit smoking cigarettes for me (and for his health, too, I assume)! I mean, that is dedication.<br />
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I wanted so badly for it to go perfectly and for me not to have a reaction to being near him. But of course, my mast cells had other ideas. The fact of the matter is that I have become so incredibly sensitive to so many things, but especially laundry products, that I just can't be around almost anyone. Clothes (and skin and hair) hold onto so much scent. And laundry products these days are, like, military grade. They are incredibly sticky scent molecules, and they basically never wash out. Not enough for someone as sensitive as me. And every exposure seems to lead to a worse reaction. So, I started feeling the pressure in my face and a sore, scratchy throat. I could also taste the very faint laundry smell. To be clear, he uses a fragrance free detergent and no fabric softener on all his clothes. It just isn't enough to wash away the old scent molecules. I ended up with quite a reaction. I went up to my bedroom to escape and deal with the fall-out. The trigeminal pain has been around an 8. I've had excess mucus and a sore throat. I've had burning (neuropathy) in my face, my lips, my eyes, in my mouth, and in my crotch. (Pain level 7-8). It then progressed to agitation, skin crawling, pressured speech, racing thoughts, nausea, global head pressure, and vertigo. I am in an absolutely miserable state. And it's only been 8 hours. Who knows what will come in the following days? Surely, a crash into lethargy and prolonged symptoms. All from some barely there laundry product residue. This stuff is literally poison to my body. I am poisoned.<br />
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Worst of all, this stuff is everywhere. It's the main reason that I can't see most people. It makes walking outside hazardous because every house and apartment has this stuff pumping out laundry vents into the air every day. We have a plan to try again. We will buy him a set of clothes to wear and be washed at mom's house only for our visit. This will eliminate the laundry product residue problem, and maybe we'll finally be able to see each other again. Maybe. I don't trust my body at all. But we will keep trying because it matters. Relationships matter. And I'm trying to salvage the ones that aren't totally gone and maintain the ones that matter so much. This illness is so incredibly hard on my loved ones. My husband deals with so, so much. He shares so much of the burden with me. He has to cope with so many of the same losses and limitations. Our life barely even feels like a life sometimes. And he keeps pushing through, keeps making accommodations, and stays by my side. It is hard to know that this illness brings so much pain to anyone that I am close to.<br />
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Life feels like a series of landmines to either be avoided or survived. It's one thing after another. Seriously. My pillow picked up a scent from my car, so I washed it, like usual, in fragrance free detergent (Biokleen). Well, after that, it smelled like chlorine. I have washed it and soaked it in vinegar, in baking soda, in vodka so many times. And it is still not totally gone. (You would be surprised how useful cheap vodka can be.) I don't know how it happened. I guess I'm looking for a new detergent again. And a new pillow. New anything is really a landmine.<br />
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Then, there were ants. Our apartment got infested, and I was having to vacuum twice a day to keep them away. But I react to the vacuum because it smells like burning rubber. These particular ants seemed to sting me. I mean, the ant attached itself to me, and it felt like a bee sting and continued stinging for at least an hour after the bite. Then a welt would show up the next day. I don't know what kind of crazy ants these are. So, we tried all the natural methods but eventually had to spray with bug repellent. No scent, but still unknown if it contributed to my symptoms. It certainly adds to the chemical load. I wasn't there for the spraying. My hubby does things like that while I'm away at mom's during the week.<br />
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Our apartment is generally bad for my health. I am generally sicker there, although I do better when there is fresh air outside, and I can ventilate like crazy. Basically, I do best when the apartment is a wind tunnel. You know you want to live with me. (Don't forget about the extreme food and cooking and product restrictions!)<br />
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Then, there's doctor's appointments and weather systems. I react in crazy ways to weather at this point. Climbing pressure, dropping pressure, too high pressure, too low pressure. My body wants none of it. It used to be just migraines, but now it's multi-systemic. Again, my body craves stability, but rarely gets it in Chicago. So, you see how life is just a series of landmines.<br />
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And dealing with these constant landmines makes my life chaotic but basically really boring. I have almost nothing to talk about outside of illness. I feel like I've written versions of this same blog post a million times for over a decade. It's hard to have much of a personality when nearly all your time is spent avoiding and suffering. I'm not independent, and I don't really have choices in life. I'm really hoping to catch up with some loved ones by video chat soon, but finding a "good" time is really difficult, and I'm afraid I have nothing interesting to talk about.<br />
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In addition to dealing with my own decline, I have been busy trying to care for my declining elderly dog, Wilma. She is my little sweetheart. But she is suffering from dementia. It is so difficult to watch her suffer. I try to help her to be happy and feel safe, but life is hard for her. She is often scared and confused. She gets lost and stuck in strange places. And late at night, she gets so agitated and cries. I have to rock her to sleep in my lap. But I know I won't have my little girl forever. I love her so freaking much though.<br />
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There's another thing that makes talking with people difficult. I don't know many other childless people. Basically, everyone has kids. Now, I'm not jealous of sleepless nights, but I am jealous that people can survive those restless nights and still care for and raise their children. I know. Envy is not a good look. But really, it is heartbreak. My heart is broken that I will never be a mother. Not that I want to pass this disease along or have a child that I am too ill to care for. But a childless future is incredibly bleak. I always knew I was going to be a mom. I used to write diary entries to my future daughter. I knew I would be a good mother because I would remember what it felt like to struggle at different ages. I knew I would try to be just like my mom was to me, a constant supporter and best friend.<br />
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So it is really hard to see pictures and videos of friends with their children. I am incredibly happy for them and absolutely amazed at how they rise to the challenges of parenthood. I am so happy that they have made these little humans and they get to raise them. It is so beautiful. It makes me cry more than anything else though. More than watching people climb mountains and run marathons and go on vacations and have adventures and celebrations. Even more than seeing the food that people are able to indulge in while I sit here with my 8 "safe" foods day in and day out. I even struggle to watch TV shows where someone gives birth. It makes my life feel empty like almost nothing else. What is this life? Why is this life? That's a question I know better than to ask. There is no why. It just is. I know that.<br />
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Well, I can't believe anyone has enough time in their busy lives for a blog entry this long. But for any of you who do make time, thank you for reading the product of my racing thoughts. I am so grateful for all the support I receive. I know how incredibly fortunate I am. Many people in my situation end up alone in the world, living in total isolation. I do not take a single person or message or word of encouragement for granted.Carolyn Medranohttp://www.blogger.com/profile/02811093427920453122noreply@blogger.comtag:blogger.com,1999:blog-833972720679789479.post-65178435063588130912019-02-17T16:17:00.000-06:002019-02-17T16:17:58.021-06:00What Not to Say to Someone Who is Suffering<div>
I wanted to share with all my blog readers a video that I made for my mom's church. The pastor was kind enough to ask for my input on how to handle the suffering of a loved one. It was emotional for me to write this piece, and a bit of a challenge to record. I was having a migraine and in a bit of a fog, but that mental dullness probably helped keep me from breaking down and sobbing near the end.<br />
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Please keep in mind, I can't set any universal standards for what you should or shouldn't say to someone you love. It's all so subjective. But having been sick this long, I certainly know what I have heard repeatedly for so many years, and what tends to rub me the wrong way.<br />
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Since I know mostly my family and friends will watch this, please know that even if you have said one or more of these things to me, it doesn't mean I took it the wrong way or that I'm mad at you. I know that all of these things are well-intentioned when they are said, and I would never hold it against someone that they didn't say exactly the right thing. Any and all support is truly appreciated.<br />
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On the medical front, I have several doctors' appointments coming up which I am truly dreading. (I dread every appointment, because they make me sick for so long.) But please don't get your hopes up! I am going in with an open mind, but not expecting much to change. But I am open to any and all potential improvements, obviously.<br />
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As always, thank you for reading (and watching), and thank you for still caring after all these years.Carolyn Medranohttp://www.blogger.com/profile/02811093427920453122noreply@blogger.comtag:blogger.com,1999:blog-833972720679789479.post-4593073839322317072018-11-11T20:01:00.000-06:002018-11-11T23:24:11.109-06:00I'm Still Here...Well, I haven't written since June. I also basically stopped taking notes on my health, because there are no more triggers to figure out at this time, and I've got a pretty good record of my triggers and reactions if needed for future appointments. I haven't had any major doctor's appointments (just maintenance appointments with my psychiatrist). I also haven't really trialed any new medicines because I'm just trying to live my life. You know what I mean? Just trying to lay low, get by, and avoid making my mast cells angry. I just want to enjoy the calm and survive the storms.<br />
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Of course, life has worked against me left and right, as expected at this point. And a million things that seem like they couldn't go wrong or seem like they couldn't cause a problem are constantly happening. I have not been stable, but I've been stably unstable, if that makes sense.<br />
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I've still been working my job in transcription since February. I still make a mere pittance, but my typing skills are pretty awesome at this point (when my hands and wrists don't hurt too much). I mostly like the job, although I often feel that I am using up all of my energy for the day to earn about $4 an hour. I work 3-4 days a week for 3-6 hours each day. So anywhere from 10-20 hours a week, basically. It's something I can do and do well (I have perfect metrics, meaning the scores on my graded projects, which really satisfies the tiny part of me left with perfectionistic tendencies.). It's also fantastic to be able to work literally whenever I feel like it. I do all my work in bed, propped up by a bunch of pillows to try to make it ergonomic and not injure anything. But in general, I have increased hand and spine pain from working.<br />
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So, one thing that has gotten trickier with working is my sleep schedule. My body really, really hates normal sleeping hours. It's pointless to even try to go to bed before midnight or wake up before 11:00. But with many good jobs being available late at night, I'm often working until midnight, and it takes me another couple of hours to wind down after that. So, I'm often up until 2:00 or 3:00 AM. I get out of bed around noon most of the time. I never sleep through the night. Not in years. I always wish I could improve these hours so I wouldn't be so late-shifted, but whenever I try, I either simply can't sleep or I have terrible sleep quality, and I don't end up getting up any earlier. It's really annoying. I've also been experimenting with reducing the medicines that help me sleep to try to improve daytime wakefulness, but it's been pretty hit or miss. I should probably just stick with what's been working to get me to sleep because if I don't sleep well enough, my daytime wakefulness is not any better.<br />
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So, this leads to the brain fog problem. I have many different levels of brain fog. Sometimes, I just have a little trouble following a conversation or a TV show. Sometimes, I have trouble producing words and sentences. Sometimes, I have trouble producing thoughts. And sometimes, I am in a stupor, close to unconsciousness quite frequently. I have trouble responding to my surroundings with speech or movement. I experience all of these levels on a near-daily basis. There is not a day without cognitive impairment. It used to be pretty predictably terrible in the morning and improving in the evening, but that doesn't seem to be strictly true anymore. I can get lost in a fog throughout the day. They are some pretty serious cognitive deficits. My face is often completely expressionless, and it often takes a ton of effort to change that. It feels like I'm wearing a mask.My eyelids feel heavy, and my cheeks feel stiff. My memory is often a huge blur, so it's hard for me to even come up with words to say about what's been going on in my life. I honestly don't remember a lot of it. When people ask me how I'm doing, it is really hard to figure out an answer a lot of the time.<br />
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However, I do have a newer symptom which may be a result of my extended social isolation. When I do have a conversation with someone that I haven't talked to in a while, I may be so out of it that I stay in a fog, but I may also get over-stimulated. It's a really frustrating thing, because I crave interaction, but apparently, it is sometimes too much for me to handle, and I become basically hypomanic with pressured speech, and I feel overly-excited. This is followed by a crash later on. I really wish my body could just maintain some kind of homeostasis instead of the highs and lows (mostly lows at this time).<br />
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The big life event that has happened since I last wrote was the death of my Granddad. It was very stressful and distressing. I am very grateful that an outdoor meeting was possible and arranged for me to say goodbye to him. I attended his funeral in an unorthodox way, for sure. I sat in the car watching the service over Skype on my phone. It was a little ridiculous, but better than missing out. I also didn't have to feel bad about disturbing the service with my audible sobs. I came into the church, wearing my respirator, at the very end of the service. I just needed to hug my family. It was just so deeply sad, and I needed to be there. So, I was inside the church for a short, but meaningful time. I definitely suffered for it. I developed a full-body tremor when I got back to my car. I waited for another hour or more before leaving. I was incapacitated for the rest of the day, and suffered a reaction for several days afterward. Thankfully, I was able to sleep through this reaction. (I never take sleep for granted!) But it involved a lot of pain, including trigeminal and body pain, lethargy, itching, digestive issues, burning, vertigo, and some fevers.<br />
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The season change has been good and bad. As soon as the oppressive heat ended, I noticed that the smells in our apartment (especially seeping cigarette smell) seem to have mostly vanished. I doubt the neighbors have changed, more that the air is cooler, so the smell is less intense. This is for a few reasons: smells are diffused more quickly in hot air, hot air can absorb more scent molecules than cold air, and humidity makes your sense of smell more effective. So all of that works against me in the summer months. I struggled so much when they resurfaced our parking lot. I couldn't be home at all. I became completely manic. But as soon as the air cooled down, I could no longer smell it from our condo window.<br />
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So, cool air is easier to deal with that way. Also, mold growth really slows down in the winter, so that's a big plus inside and out. It also helps that we don't have to rely on our wall unit A/C which blows in mostly unfiltered outside air. However, then we have winter problems to deal with. The dry air is killer on my eyes. My dry eye disease was pretty well-managed over the summer, just requiring a few applications of preservative-free eye gel a night. Now that the air is cooler and drier, and we're running the heat, I've already started getting eye abrasions again while I sleep, no matter how much eye gel I use. So, I have to carefully manage our indoor humidity, which can be tricky to avoid mold growth and spread. But I'm managing it. Season change is also very hard for my migraines and facial pain. I feel every barometric pressure change in my face and sometimes in my whole head. Too low, too high, too steep a change=increased pain. But now that I am not often exposed to fragrance for very long, the pain usually doesn't reach the unbearable level.<br />
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My girl, Wilma, has been having plenty of problems to keep my mind worrying, and not about myself. She's had more intestinal infections. She lost her appetite completely for a while. I had to hand-feed her meals. She's very, very skinny at this point. But she is eating again. She's on her second round of antibiotic treatment in three months. It helps so much with her appetite and her digestion. I wish she could just stay on it. Probiotics made specifically for dogs and recommended by her previous vet seem to make the problem worse, so we'll stick with what works. She is on a tiny, tiny dose of a very safe antibiotic, and everyone is much happier when she can digest properly.<br />
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Unfortunately, she is still dealing with the effects of dementia. We notice it worsening week by week. It also seems to progress every time her GI flares up. She has some really strange behaviors, including getting herself stuck in very strange places (like wedged behind the TV or between a dresser and the wall or under my bed). She also has developed extreme thirst and restlessness late at night and in the overnight hours. This can make it very difficult for me to sleep because my sleep is so delicate. Any little sound or movement, even while wearing my earplugs, will wake me up, and I don't fall back to sleep easily. So, we're managing as best we can and trying to keep her happy, comfortable, and safe. It's just getting harder to do when she puts herself in precarious situations!<br />
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I'm sure there's a million other things that I've forgotten, but the only other thing I can think of right now is upcoming appointments. I am seeing my current immunologist this week. I haven't seen her since February, I think, so it is good to maintain that relationship. She also prescribes one of my specially formulated medications. I don't really have a PCP right now, so it makes sense to keep seeing her, even though she has nothing new to offer me for mast cells. I also will be having a dreaded dentist appointment sometime this winter. I haven't been in 3 or 4 years due to scents and not being able to wear my respirator when I am in the office. I don't go inside any doctor's office without my respirator. And I will be in close contact with the hygienist and the dentist, so we are going to try our best to make it an unscented and very efficient appointment. But I will still be absolutely terrified of how severely I'll react. My last appointment led to a month-long migraine, so I am truly fearful for how much pain I will invoke.<br />
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In February, I will have two important appointments. I will have my yearly appointment with Dr. Barboi, my autonomic neurologist. I'm pretty sure he won't have anything new for me to try, but I need to remain his patient too. He's a man you want in your corner, for sure, and he understands my situation better than most, even if he can't do a lot to help my current state. Finally, the big news is that I got an appointment scheduled with a mast cell specialist in Chicago. I should really say that my mom got me the appointment, because my past trauma prevented me from being able to make that call myself, and I don't believe it would have happened without her help. I think it is so important that I see this doctor, but I have only a modicum of hope that there is anything else that can be done for me. Nonetheless, it is something I absolutely have to try, no matter what the chances are of improvement.<br />
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I think that's everything. I hope everyone reading this is having a nice November. Thank you for those that read and that care, after all this time. I am endlessly thankful for the support I have in my life. I know where I'd be without it, and it's not here.<br />
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Here's what I mean when I say I wear a respirator to go out. I mean an actual respirator. Those dinky little cloth carbon masks do nothing for me anymore. This gives me a few minutes before symptoms start, due to skin absorption. But wearing it avoids the worst of the trigeminal pain I get from every scent imaginable. I still end up with miserable symptoms for days after an exposure, but the suicide pain in my face is so much less, as long as I don't stay anywhere too long. It's better than nothing! But it doesn't give me my freedom.<br />
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<br />Carolyn Medranohttp://www.blogger.com/profile/02811093427920453122noreply@blogger.comtag:blogger.com,1999:blog-833972720679789479.post-55813477141030384912018-06-01T00:13:00.001-05:002018-06-01T00:13:14.215-05:00Two years of isolation...so farWell, a lot hasn't changed, which is mainly why I haven't written. But, I also started working a new job in February. I got hired as a freelance transcriptionist. The pay is very, very little. But I also work only as much as I am able when I am able, and I can do it in bed. I only take jobs when I feel able to do so, and if it seems too hard, I can bail within the first hour. It's a good setup. Amazingly, even when I am in too much of a fog to put together a coherent sentence, I'm able to do this job. It's something I can do on auto-pilot. I feel like I accomplish something, although working around my hand and wrist pain, trying to prevent repetitive strain injury is quite a challenge.<br />
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I've given up on my daily diary. But I have been tracking any major triggers.<br />
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The barometer changes and highs and lows still cause me a lot of trouble. Migraines are just the beginning. When the barometer is dropping the day before rain or storms, I am basically braindead all day. Severe brain fog and lethargy. Extremely slow thinking. And sometimes a horrific migraine.<br />
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I saw my autonomic neurologist on February 13. I wore my respirator, of course. But I still had a severe, three-day reaction that included headache and facial pain, nausea, burning, lack of appetite, diarrhea, vertigo, extreme emotionality, agitation, poor sleep, bladder pain, heartburn, stupor, palpitations, severe brain fog (unable to follow a TV show), and a massive migraine. And nothing too much came from the appointment. He believes I have Mastocytosis and not MCAS. But he doesn't think it's safe for me to have a bone marrow biopsy (and neither do I). I also really doubt it, due to my low tryptase levels. He thinks I should try Imatinib, which is a type of chemo. But no one would prescribe it for me without high tryptase levels or life-threatening symptoms. He thinks it might be a miracle for me, but I'm not sure I even want to try it unless I am having life-threatening symptoms.<br />
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March 5, I finally felt brave enough to trial something. I tried the mast cell stabilizing eye drops (Opticrom), and ended up with a corneal abrasion. I apparently react to the preservative called Benzalkonium Chloride. Stinks, because it's in all allergy eye drops and most nasal sprays. My eyes are a complete disaster without allergy eye drops. Blepharitis, blepharospasms, itching, burning. They cause me a lot of distress, in general. I do have a better preservative-free lubricating gel now, so that helps to prevent corneal abrasions. (Although the end of winter has helped, too, I'm sure.)<br />
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March 19-24, I put myself into accidental benzodiazepine withdrawal. I literally just forgot to put the pills in my pillcase. It was really dumb, needless suffering, and also a stark reminder of just how sick I will get if I can ever not access the one safe manufacturer I have for this medicine. It is the main reason I sleep most nights now. And sudden withdrawal is something I probably wouldn't come back from.<br />
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March 29, I guess I got brave again. I ate a third of a chicken breast with my dinner. I have nine safe foods. I was hoping that chicken would be safe. Unfortunately, it really sucked! I felt incredibly full (like just ate at an all-you-can-eat buffet kind of full) and had shortness of breath. I was up with a pounding heart all night. The next day, I had severe diarrhea. I guess I won't be trying that again. I'm stuck with my nine safe foods: Joe's O's, almond milk, rice cakes, peanut butter, quinoa, carrots, broccoli, potato chips, and butter. I am very grateful that I have enough safe foods to get by, but man, do I miss a lot of foods and variety!<br />
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Some time in early April, I was having an incredibly good few days. Unfortunately, those were the days I was scheduled to do the 24-hour urine collection to firm up my diagnosis of MCAS, which would allow me to see a more specialized doctor for treatment. And that test already has a very low rate of actually catching the elevated mediators in urine. It has really difficult handling instructions. And I know I did not manage to get each sample of urine chilled quickly enough. Plus, it is best done during a major reaction or flare. So it was no surprise that we did not find anything helpful from that test. It is majorly frustrating, though. Especially because I became highly reactive again the next day. I don't know how those days even happened. But they are long gone. I've been a mess since then.<br />
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April 23, I went to a doctor's office (annual with my gynecologist-wore my respirator, but the office was very scented). I experienced a big adrenaline rush followed by a crash. Severe exhaustion, lethargy, burning torso, major bloating, gastroparesis, presyncope, bladder pain, burning vulva, severe burning throughout torso (pain level 8), roof of mouth burning, chills, facial pain (level 6), and insomnia. The next day, I felt worse as the day progressed. I had diarrhea, burning with all food, flu-like body pain and chills, nausea, feeling hot and cold, burning in arms, ribcage, chest, and vulva.<br />
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May 15, I trialed Zyrtec tablets. Taking the tablet form could save me hundreds of dollars a year over the Liquid Gel form, but I wasn't sure if I tolerated it. The only way to know is to be a lab rat. So yet again, I waited until I had a relatively good day followed by a relatively good night. Then I sabotaged it with the trial. I didn't feel too terrible the day of, but that night, I only got four hours of sleep followed by many hours of heart pounding, hot and cold, and diarrhea. Another fail. And another drug that I can only tolerate one form of. Such a difficult place to be in. But at least this one is available OTC. For the three prescription medications that I require a particular brand, I am completely dependent upon the pharmacies for my access to the medicine and my resultant well-being. And they can change that access on a whim. I have no control, and I could lose any relative stability that I currently have if they choose to switch manufacturers.<br />
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May 20, my laptop practically died doing a Windows update. I took it to a local repair guy. Unsurprisingly, but still disappointingly, it came to me back scented on the 22nd. Some scent had absorbed into the wrist rests. I wiped it with alcohol swabs every hour and kept a fan on it for two days straight. Unfortunately, I still reacted majorly to it, even though I didn't get very close to it. I had massive facial pain and a feeling of sheer panic for 2.5 days straight. It was terrible. I was an absolute wreck. In addition, my laptop was not fixed. We had to bring it back to him. We told him in no uncertain terms that he would need to have no fragrance on his hands or wrists when he worked on my laptop. He assured us that he would wipe it down afterwards. Geez. People seriously have no clue. Like I didn't try that myself? I got the computer back a couple days later. I haven't been near it since. Mom and Andy worked hard to air it out outside in the sun and wipe it down well. I have no idea how it's working or how it smells. I am basically terrified of it right now. My hubby has been nice enough to let me use his laptop for my work. My computer has been completely wiped. I lost everything on it in the update. I lost several years worth of photos, because I'm apparently terrible at backing up data. But it is only three years old, so I really hope it still works. And even more so, I hope that I don't get sick the next time I use it.<br />
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In the meantime, on May 29, I decided to finally trial the Gastrocrom. I've been putting it off for a few reasons, but mostly because it is really the end of the line for my treatment. I have tried and failed everything else. I have even tried this medicine before, but that was back when I was on many medications that I reacted to, and I couldn't sort out my reactions yet. I've also progressed a lot since then. So, on the 29th, I mostly had that familiar burning in my torso. It wasn't too severe. I was a bit agitated at bedtime, but I managed to sleep okay.<br />
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On the 30th, I tried Gastrocrom again. (It's really a tiny dose I'm trialing. It's 1/4 of a vial. It is standard to take 8 vials a day, although some take up to 16. So if my foggy brain can do math, it's 1/32 of a standard daily dose. I have a long way to go on this titration, if I make it.) I again had evening burning and agitation. I slept, but not well.<br />
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On May 31st (today), I took the same dose for a third time. Today has been horrible. I've had diarrhea, hypotension, and many hours of stupor. It was a day for staring with mouth agape. Not able to formulate a thought. It was bad for about six hours. I also had horrible chest pain that was not a normal symptom for me.<br />
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So tonight, I got my ability to think back, although I had to cancel plans to move back to my apartment tonight, due to my inability to think or move. And it is hard not to worry. I just really need to tolerate this medicine. My current doctor has nothing else for me to try. And I don't have any other mast cell doctor to see at this time. There are doctors on my list, but they all have obstacles. The one at Rush won't see me without more laboratory evidence. The integrative one doesn't take insurance and seriously overcharges. One at Northwestern has mixed reviews. And others are out-of-state. But I don't know what the point would be when I don't qualify for any of the stronger treatments. (No chronic hives, no high IgE levels, no life-threatening symptoms that would make me eligible for chemo treatment, no high tryptase levels.) So I feel completely on my own. I haven't even been back to my immunologist since my urine testing, and I'm not scheduled to go back. I may as well keep trialing the Gastrocrom, because I know that she doesn't have anything else to offer me.<br />
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It is hard not to feel hopeless. And it is hard that everything depends on me tolerating this drug. 'Cause I'm not doing real great so far. The only thing is, it is not uncommon for people to originally get worse on this medication, and then feel better. And then feel worse again with every dose increase. That sounds horrible, because I have 32 dose increases to survive. And I will not increase the dose until I feel sure that I'm not reacting to the current dose. So this could go on for an extremely long time. But for some people, this medicine works so well that it allows them to tolerate other medicines...and foods, and environments. Unfortunately, if this is like my other medicine reactions, it will be a cumulative reaction that will worsen with each dose. I don't know how long I can stand it. So far, it does seem cumulative. But obviously, three days is early. But it is really hard to put my body through so much.<br />
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The thing is, when I'm successfully avoiding triggers (which is incredibly difficult), and when the barometer stays level and normal, I can stand to live in my skin. I sleep well through the night (with one expected wake-up). I don't have constant headaches and migraines. Both of these things feel miraculous. But they are totally dependent on my avoidance of all triggers. I can even work a job (although please don't ask how meager my income is). I can feel happy at times. I can spend pleasant time with my husband or my folks. So it is so hard to give up that tenuous well-being for a medication trial that isn't going well so far, and could even further escalate my condition.<br />
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It is just so frustrating!!! I want to give up so badly at times. Part of me feels very strongly that everyone in my life would be better off if I didn't exist. And at other times, I think I could be content with my little bubble life, and I wonder why I would risk it. I know I have to keep trying this medicine, because it truly is my last hope for the foreseeable future. And it is not fair to those that love me if I don't give it a good try. So I have to suffer. I honestly just want to be done. But I know I can't. I have to keep going through hell and find a way to retest my urine and try to get to a new doctor, if that is required. I just have to fight past the hopelessness and despair and keep trying.<br />
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It has been almost exactly two years since my hospital stay that escalated me to my current state. During that hospital stay, I developed the severe burning symptom. And my chemical sensitivities reached a level where I could no longer be in any scented environment or near even mildly scented people. I gave up teaching piano. I have been restricted to nine foods, two potential safe spaces, and three safe people. I have suffered every time I have tried to be near other people or left my safe spaces. Two years of such isolation. I have depressive tendencies to start. Then, my illness isolates me from so many people that I love. It is just so hard. Two years is a long freaking time. And I know it's just the beginning.<br />
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June is also looking to be a tricky month. All three of my safe people will be going on trips. Of course, I will be staying home, mostly alone. That is already messing with my head, that I am so incredibly trapped, and I may well never travel again. There will also be so many exposures to avoid. Resealing the street and driveway outside my mom's house will have me trapped in my apartment. I just have to hope that the potential cigarette smoke inside and grilling/bonfire smoke outside don't make it too unsafe for me. It does put me at higher risk for anaphylaxis. And if I go back to my high school level of anaphylaxis to smoke, there may be no turning back. Avoidance is the best way to prevent that. But it could get nearly impossible to avoid at times this month. I'll have to hole up in the bedroom at my apartment at least a few times, since it is the most sealed-off room. Unfortunately, there's no a/c in there, so passing out from heat is a real risk if I stay closed in there too long. Hopefully, it won't be too hot of a month.<br />
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Thanks for reading and listening. It is hard not to feel lonely in my bubble, especially when everyone goes to sleep long before I do. I still have my Wilma with me, although she sleeps a LOT. My poor little girl has had some problems. We haven't seen the vet about it (vet's offices are a scent nightmare), but she has something like doggie dementia. She loses her balance a lot. She doesn't know where sound is coming from. She has fallen down the whole stairway at Mom's twice! She's fallen off the bed more times than that. She doesn't know how doors work most of the time. She has run right into our sliding door. She's also run into a brick building after going potty. Sometimes, she sleeps so deeply that I can't wake her up. She shivers when she is confused, because it scares her. I think she shivers when she's in pain, too, but it's hard to tell, because she never cries. If she did, I'm pretty sure my heart would break. When she's been asleep for a while, it is hard for her to wake up, and her back legs don't work. She has had several days where she has stroke symptoms for a day. But the next day, she is all better. Except for the noted deficits. She still has a lot of really happy times where she acts like a puppy. Her motto seems to be, "Shake it off." She and I are very closely bonded. And I'm not allergic to her, which is huge! She still lets me sleep until noon, and she is really low-maintenance. I cook food for her to supplement her prescription food diet. But it keeps her GI totally under control. Otherwise, she is such an easy dog to care for, although she has never been well-trained to go potty outside. We do our best! I can't actually care for her alone. I need Gustavo to take her outside in the early morning. Otherwise, I can manage all the rest.<br />
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Okay. As always, I still have more to say, but I need to get ready for bed. My body wants to stay up until 3:00, but I try to force it to bed a couple hours earlier. Thanks for still caring, even though I can't see or even really meet most people. I am incredibly grateful to my three safe people, for helping to make my life livable... and possible. I really wouldn't be here without them. They put up with so much and accommodate my illness in countless ways. It is a huge burden that they help me carry. I'm also grateful to others that reach out, even though I am not always in a state to respond. It helps my life feel a little less empty. Love to you all.<br />
<br />Carolyn Medranohttp://www.blogger.com/profile/02811093427920453122noreply@blogger.comtag:blogger.com,1999:blog-833972720679789479.post-13720059516292265382018-02-06T00:17:00.000-06:002018-02-06T00:17:11.616-06:00February 2018Well, I meant to post after the new year. I even wrote a paragraph for a new year's blog post, but the downward spiral continues, and time is mostly spent in a major reaction or a flare from too many reactions. Hopefully, I'll get through this post tonight, when I'm having a tiny lull in the severity of my symptoms.<br />
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I spend a whole lot of my time in Facebook Support Groups. It is such a great place to receive support and validation for rare, complex, and misunderstood conditions. I mostly participate in groups related to MCAS and Multiple Chemical Sensitivity, because those are the issues I am actively dealing with lately. And the ones I do not have much/any help to manage.<br />
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Anyway, someone in the group asked, have you accepted your illness? This was my response:<br />
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I keep progressing, so I keep having to learn to accept new levels of limitations. I don't know if I'll ever be able to accept being confined to one of two homes, and only able to be around 3 people. This life is too limited to accept. I've been sick forever. I've accepted that. I just can't accept losing almost everyone that matters to me and that still cared about me after being sick for so long. I value those people, and it hurts so much to see them slip away. I can accept eating 10 foods. But I can't accept that no one can even eat their food in the same home as me. It is just too much. I have accepted that I can not care for a child or have a family. But I can not accept that I can't even meet my own niece because her home is not unscented. This is all unacceptable to me.<br />
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Another conversation was about which class of chemicals you react to. This was my response:<br />
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I know I was originally sensitized to one class of chemicals, but it has always generalized and progressed. It was once only cigarette smoke, then generalized to all smoke. Then, it was only Dawn dish detergent, but generalized to all scented cleaning and laundry products. But I was safe with essential oils...until I wasn't. Now I react to any hint of any essential oil. And on and on. Rubber door mats. Then the smell of all cooking, followed by the smell of all seasoning Then artificial fruit flavoring (just the smell). Then natural fruit flavoring. Then mint flavoring. Then it got to the point I react severely to the smell of certain foods on someone's breath after they've eaten. And on and on. It has generalized to the point that I seem to react to all scents now.<br />
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So, I guess I'll pick up my diary of reactions where I left off, on Christmas Eve. Gustavo came home that night, having been in a scented home around scented people, and he came bearing scented gifts in scented wrapping paper. (Nothing he brought in was actually a scented product. In fact, there were many unscented products. But they had absorbed fragrance. So it was all a "second-hand" fragrance exposure- maybe 3rd hand?) Anyway, I developed facial pain at a level 8 and my eyes were burning. I was also in a panic at all the fragrance brought into the house. I had to take everything scented and get it outside to air out, quickly. And Gustavo had to change clothes and shower, quickly. It really is an urgent situation, because the longer the exposure, the more severe and prolonged the reaction. Also, I couldn't let the scent absorb into any of our stuff. It was also hard to deal with emotionally, because I had completely isolate myself all day, missed out on the festivities, and I still had to suffer the consequences. I was also distressed because video-chatting just hasn't been working well. We tend to have a poor connection, so even though we try to have me virtually participate, it really isn't successful.<br />
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Anyway, that was my delightful Christmas Eve. Christmas Day was rough, too. I woke up with burning eyes, and developed a migraine (with visual aura) during breakfast. Then, I reacted to the smell of coffee that my husband was drinking, even though he drank out of a thermos. The coffee on his breath was enough to trigger an intense burning in my torso. So, then we went to mom's house, where I hid out in the bedroom, apparently safe from any scents downstairs. Unfortunately, I hadn't accounted for the heating system sending air from downstairs up into the bedroom through the vents. I ended up with facial pain level 7 and bladder pain/symptoms.<br />
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So, December 26, I was really suffering from the holidays, even though I had not actually been around any people. My eye burning was severe. I had diarrhea (this is a really unusual symptom for me, since I have suffered chronic daily constipation since age 18. So diarrhea is my body's strongest sign to me that I am having a reaction, since it is so abnormal for me). Unfortunately, the barometric pressure was also really high that day, so I suffered global head and face pain.<br />
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December 27th was much the same. Diarrhea, burning eyes, severe sinus/facial/temple pain, photophobia, and nausea. I was also briefly exposed to woodsmoke outside.<br />
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My birthday was the 28th. There wasn't much to do in the way of celebrating. I spent it with my 3 people (mom, stepdad, husband) at mom's house. The barometric pressure came down, and my symptoms wore off a bit in the evening. I think we played cards or a word game. That was about it. At least there were no new triggers that day!<br />
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December 29th was a disaster! I was finally feeling better. This has happened so many times, I should assume that feeling better is an omen that something horrible is about to happen. And it did! I was home alone all day and evening, as my husband was out with friends after work. The sewers to our apartment building froze and backed up into our bathtub and toilet. I had to spend hours that day scooping water out of the toilet and pouring it outside to prevent it from overflowing. Unfortunately, someone in the building had taken a shower before knowing about the plumbing problem. So all of their scented shower water came up into our toilet. I scooped and dumped bucket after bucket of water, while wearing my respirator. It went on for hours, and our entire apartment was flooded with fragrance. This was the beginning of the nightmare. At 11:30 that night, Gustavo came home. The neighbors had all stopped using the water, so there was no more water to scoop. But I had to get out of the apartment. It was totally contaminated. We moved me over to my mom's house at midnight. Gustavo had to spend the next 2 weeks scrubbing and airing out the apartment, in winter weather! I don't know how he tolerated the low temperature and humidity.<br />
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The following days, I had plenty more exposures. After an exposure like that, I get sensitized, and begin reacting to new things. On new year's eve, I reacted to the smell of coffee brewing in the kitchen while I was sleeping upstairs. The smell came in through the vent and triggered severe burning in my chest/stomach. The burning persisted for at least a week. And I was still suffering severe head/facial pain from the sewer problem. I slept terribly for several days. The barometer went really high again, compounding all of my pain. It was really cold outside, and I began reacting to the smell of fireplace smoke seeping into the family room at mom's house every night. I was dealing with a lot of eye symptoms, too. Photophobia, swollen red eyelids, burning pain. The eye problems have persisted all winter, and I haven't worn contacts since Christmas. Too bad my glasses make my headaches worse, because I am blind without them. I also absolutely hate how I look in glasses, but all vanity is lost at this point. I dealt with a lot of bladder pain and symptoms as well.<br />
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I think I finally felt a bit better on January 7-8. The temperature was milder, so the heat was running less. And I had no exposures at all those days!<br />
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The next week was more of the same. Mild exposures, constant symptoms. The barometric pressure has not been my friend this winter, contributing to a lot of pain.<br />
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On January 13, I was exposed to the smell of hot peppers on my husband's breath. He didn't eat at home. The smell was just still on his breath. I developed what felt like fire in my chest and private area. This was a new symptom for me, that has recurred at times. I also developed bladder pain and frequency, mild throat swelling, and red eyelids.<br />
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The next day, I was still suffering. I awoke to diarrhea, the clear sign that I've been exposed to a trigger.<br />
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I suffered increased indigestion and burning inside for the next few days, along with nausea.<br />
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I trialed a new food, sweet potatoes. It did not go well. My abdomen swelled about 4 inches beyond it's normal size. I was bloated for a few days after that, and I slept terribly.<br />
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Then, on January 22nd, it was time for another medication trial. This one was purely for my own knowledge. I had to be my own lab rat again. I had to try a different brand of Klonopin to help me find out what I react to in another brand. I learned that Yellow dye #10 causes me severe diarrhea, insomnia, heart palpitations, and bloating. Good to know a clear trigger, but unfortunate to go through, as it took 2 days to confirm, and a few more to recover.<br />
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The end of January, I was mostly dealing with scary low vitals. My blood pressure was as low as 74/49 with a pulse of 55. It didn't ever reach 90/60 for several days. The barometer was up and my digestion was really slowed, causing nausea and reflux trouble. I'm on a lower dose of Omeprazole now (because it is the only one without red dye). So, I deal with a lot more heartburn and reflux than I used to. This is painful and makes me nervous, since my grandma died from esophageal cancer. I can't let this reflux go on indefinitely.<br />
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January 30th was bad news. The barometer dropped hugely. And I had to go to the psychiatrist's office. The office is inside a hospital building, and there are always plenty of scent exposures there. I wore my respirator the entire time and kept my coat on to keep my skin covered. I was inside for about 45 minutes. And, I've been suffering ever since. That day, I thought I had escaped a severe reaction. I had facial pain, exhaustion, mild burning and reflux. But the pain could have been from the barometric drop and wearing the respirator.<br />
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Unfortunately, the reaction was strong the following days. Sleep was poor. Migraine was persistent. Digestion was a mess. Bloating and diarrhea and reflux. Widespread burning throughout my torso. Vertigo and nausea. All of that was pretty constant.<br />
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Then, my next big disaster happened. We actually had some plumbing repairs done on Wednesday last week. I could smell a scent around both sinks, but I thought I was tolerating it. I was already in a terrible reaction, so I didn't realize that I had also been reacting to a chemical used in the repair. Until Saturday night. We were watching SNL. During the musical guest, I had Gustavo look at the pipe under the sink, because it seemed to be leaking again. So, he took apart the pipes under the sink, and this noxious putty came out. I got immediate vertigo, weakness, collapse, nausea, mucus, choking, then heart pounding and internal vibrations, headache, facial pain, reduced consciousness, followed by sobbing. Luckily, a Benadryl helped with a lot of that. But sleep was nearly impossible. Heart pounding and vibrations all night. Vertigo so bad it felt like the bed wouldn't stop moving. Sunday, I developed severe diarrhea and was very anxious and restless. I finally got out of the apartment and to my mom's house in the afternoon.<br />
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I am still trying to think clearly enough to figure out how to solve the problem. It is in both sinks. And it is a small apartment. So now that I am sensitized to it, I smell it everywhere. I have ordered a couple of non-toxic products that may be alternatives to the putty, but I can't be sure they will do the job. And I don't know when it will be done, or if we can get both sinks dealt with.<br />
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I am beyond frustrated. We had finally gotten the scent from the frozen sewers mostly out of the apartment. Now, who knows how long until I can move back home. I was essentially poisoned, so I need to be absolutely sure it is safe there and cleared of any residual chemical before I can go back.<br />
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After the exposure Saturday night, all I could do was sob and pray for death (and I don't believe in God). It's a weird obsessive thought that gets in my head after certain exposures. I am not suicidal, but some chemical exposures trick me into feeling that way, and I can't think about anything else. And then weirdly enough, the Benadryl kicked in, and my head went back to the "just deal with it" attitude I usually have.<br />
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I spent Sunday mostly alone (Sports Go Sports!). I have been sensitized again, so now I am reacting to some residual smell of fabric softener in the dryer vents that leaves a hint of fabric softener smell on clothes. I don't know how much more sensitive I can get to that poisonous smell. I had a lot of burning, body pain, nausea, and diarrhea all day.<br />
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Today is Monday. Day 6 of reacting (to the psychiatrist and the putty). Diarrhea is the worst it has been. I've lost 6 lbs. in as many days. Abdominal cramping was bad today. I've had facial pain and a headache, but no new exposures! Tonight is the most at ease I've felt since a week ago, before the trip to the hospital. A day with only diarrhea to deal with is a huge relief.<br />
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I'll be staying at mom's house until all residual putty smell is gone (hopefully). The bad news is, I have another doctor's appointment in 1 week, and another one 2 weeks after that. Next week will be my annual visit with my autonomic neurologist. I need to remain his patient, so I need to see him yearly, even if he isn't able to help with my current problems. I don't know exactly what I need to discuss with him or ask him for. Probably, I need to try compounding a PPI for the burning. But I actually have another medication trial to do before then. I need to try Nexium without the capsule. Apparently, you can just take the contents, and avoid all the dyes and gelatin that I react to. But that means I need to get back to baseline again, and then I need to risk ruining it with another medication trial. So, that will probably be my goal for later this week. Lab rat time again. It would be a simple solution, since Nexium is OTC, and I could just take more on bad days and less on good days.<br />
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Then, at the end of the month, I'm seeing the ophthalmologist. These eyes have been troubling me for months now, and I really miss my contacts. I think I have chronic dry eyes, causing the burning and abrasions. But I also have edema in the eyelids, probably from the MCAS. I haven't been in that medical building in many years, so I am scared to find out what the smell will be like, and I deeply dread getting sicker just to try to feel a tiny bit better at these doctor's appointments.<br />
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Well, sorry for writing another dissertation. I should really write more often, but the good days are few and far between. I am so lucky, as always, to have my support people, helping me through the meaningless suffering that is my life. I desperately wish I could be more to more people. Hopefully, one day, something will change. But I would settle for the downward spiral stopping.<br />
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I need to retrial the medicine called Gastrocrom. It is a mast cell stabilizer. I still have it here. I will be trying to titrate up extremely gradually this time. Because it is known for triggering a flare when you start it, and with every dosage change. But it is very stabilizing for many people after that. I just don't know when I can try it. It looks like March, because February is already a loss.<br />
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Thank you, thank you, thank you to those who read my saga and support me through this.<br />
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I have a few fun links today for anyone interested:<br />
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A great article about visiting someone with chemical sensitivities: <a href="http://www.ei-resource.org/expert-columns/dr-gloria-gilberes-column/visiting-a-victim-of-chemical-sensitivity-without-compromising-their-health/">http://www.ei-resource.org/expert-columns/dr-gloria-gilberes-column/visiting-a-victim-of-chemical-sensitivity-without-compromising-their-health/</a><br />
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An abstract explaining how chemically sensitive people can be sensitized to essential oils and the smell of food: <a href="https://www.ncbi.nlm.nih.gov/pubmed/26030111">https://www.ncbi.nlm.nih.gov/pubmed/26030111</a><br />
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The emotional aspects of multiple chemical sensitivity: <a href="https://themighty.com/2017/04/emotional-aspects-multiple-chemical-sensitivity-mcs/">https://themighty.com/2017/04/emotional-aspects-multiple-chemical-sensitivity-mcs/</a><br />
This article has an excellent quote about the emotional pain of chemical sensitivitis: "And let’s not forget feeling discounted when family and friends choose their toxic fragrances and products over being in a relationship with us, or the frustration and often anger of knowing that the world in general is toxic to us and the helplessness of having to choose to be home-bound so we aren’t sick all the time."Carolyn Medranohttp://www.blogger.com/profile/02811093427920453122noreply@blogger.comtag:blogger.com,1999:blog-833972720679789479.post-10686599065993763602017-12-24T22:30:00.002-06:002017-12-24T22:44:26.937-06:00Progressive Isolation...Christmas Eve aloneWell, writing a blog post on Christmas eve is a bit unconventional. I've certainly never spent a Christmas Eve home alone. The rest of my family is all at church services or family gatherings. It's a hard pill to swallow that the only way to stay safe is to stay home alone. The degree of suffering for attempting to attend any of those events is way too much.<br />
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Thanksgiving was a bit of a disaster, even though my mom's side of the family tried so hard to make me comfortable. Every little thing was planned. Everyone went to great lengths to de-scent themselves. There was no cooking done. No strongly scented foods. Not at all a traditional Thanksgiving meal. But I was having a full-fledged reaction before we even arrived. I reacted to my husband's body wash, which was unscented, but still problematic for me (probably the botanical oils in there--not really fragrance free!). I was in and out of consciousness on the car ride over. I collapsed in mom's driveway. I was basically carried into the house, where I took a Benadryl, and waited for the reaction to ease up while being almost completely passed out for nearly an hour. It was a rough start, and it just got worse. I started developing a severe migraine with the associated neurological symptoms as soon as more people arrived. I had to go upstairs to my safe bedroom, and stay there the remainder of the night. My facial pain reached a 9 that evening, along with vertigo, nausea, lack of balance, and weakness. I remained sick for at least a weak, while also being even more sensitized to other triggers.<br />
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So, that is how I've ended up alone for Christmas Eve. For Christmas day, we have new plans. Everyone will still de-scent as best as they can. The food will still not be cooked in the house, or strongly scented. But I will spend the whole time up in the bedroom. We will Skype as much as we can. We'll try to play a game. My hubby will bring my food and gifts upstairs to me. It should be safe. Fingers crossed!<br />
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The past couple of months have been very emotional for me. A lot of total breakdowns. And major emotional breakdowns are really hard on my body, too. They usually trigger migraines and insomnia.<br />
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I've developed reactions to new things, or just identified more triggers. It's hard to say.<br />
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-I react to the smell of even more foods. Pretty much anything seasoned is problematic. My husband ate a cold tuna sandwich, and I had to hide in the bedroom with my chest burning for 2 hours. I also developed bladder cramping and facial pain that night. Other symptoms continued for a few days.<br />
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-I reacted to the smell of old coffee grounds. They were 3 days old. I developed an instant migraine upon entering the apartment, facial pain level 8, vertigo, nausea, tingling body, severe light sensitivity, burning chest, my tongue felt swollen, slurred speech, and aphasia. It was nuts how severe the reaction was to an undetectable scent that I wasn't even aware was there. I stayed sick for days, but also had more exposures in the following days.<br />
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-Pharmacies have continued to make my life difficult by changing the manufacturer of my generic medications. I now have 3 Rx meds that I have identified a brand that I can tolerate and a brand that makes me incredibly sick. There is no real indication yet of what inactive ingredient I may be reacting to, besides red dyes. There are still some unknown culprits. The symptoms to the wrong brand of the same medication usually include: insomnia, diarrhea, itching, bladder pain, facial pain, headaches, low blood pressure, and GI bloating. They tend to pass in a few days, but it can take time to identify the cause and access the right brand again. I go to 3 different pharmacies currently to get my safe brands of meds. It requires a lot of phone calls each month to make sure the brand I need is ordered in time. It is a huge hassle, and a real challenge with brain fog.<br />
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-I'm still reacting to weather changes, especially barometric pressure changes. I don't just react with a migraine anymore. I frequently get a whole mast cell cascade of symptoms, with chest burning, nausea, swelling, vertigo, itching, insomnia, and more. This has been nearly constant the last couple of months.<br />
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-I've started reacting to the smell of rubber-backed doormats. I've only recently identified this as a problem, so we're still trying to find a good replacement. I suspect this smell has been bothering me for a long time, but I've only recently identified it. (I used to think it was gas of some sort.)<br />
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-If my sleep is interrupted, I'll be sick all day.<br />
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-We had our apartment's smoke alarm go off. The fire department came and identified a burning plastic pipe in the laundry room. Luckily, we were able to duct tape up our door, so nothing got inside. But that could have been disastrous.<br />
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-I barely, barely, burned some carrots in the microwave. The tiny hint of smoke created sent my head pain to a level 9, again, along with burning in my chest and abdominal pain.<br />
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-At this point, I react to being around anyone that doesn't lead an unscented life. So many scents hang around. I react to second hand exposures to fragrances. So if Gustavo comes home from his mom's house or the pharmacy, he has to change clothes, because the scent is now on him. If my mom comes home from a concert, she was around scented people and got hugged by scented people, so she is now scented. The other huge issue is laundry products. My sensitivity is so severe, probably because I am exposed to it most times that I step outside every day (laundry vent exhaust in our apartment complex). <span style="background-color: yellow;">For the last 6 months, we have not been able to wash our laundry in our apartment's laundry machines. Even though we use unscented products, the machines usually have scented products in them. So the residue comes off onto our clothing, making it unsafe. So, I assume this is a problem for anyone that has a shared machine and anyone that even occasionally uses scented products in the laundry. This particular issue has made the isolation so severe. Because even if a person follows a perfect unscented protocol, they will still smell like Tide or Gain or Bounty to me, and I will still react severely. </span>Highlighting this so those that are skimming can better understand why I can't have visitors anymore.<br />
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With all of these reactions, I haven't trialed new medicines, and I haven't seen any new doctors. I just needed a break from that. But not much of a break, because I'm still constantly reacting to things. My "good days" have been decreased to a couple of good hours a week. Daily symptoms include headaches, facial pain, heart rate and blood pressure changes, severe brain fog, random eye abrasions upon waking, unpredictable insomnia, and GI problems. I am so grateful I no longer have pain level 7 or above on an average day. And I am so grateful that I get enough sleep more nights than not. I truly believe the reason this has improved is my attempted avoidance of all triggers, especially environmental ones. But daily symptoms are still severe enough that I dread every day.<br />
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I tend to suffer from brain fog most of the time, to the point that I feel mostly numb or I'm vaguely aware of depression. But whenever I am feeling more clear-headed, I start to feel very emotional, and end up crying uncontrollably.<br />
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It's been a year and a half so far that I have been progressively housebound. Now, I can be around 3 safe people and I have 2 safe environments. (Technically, there are a few more safe people, but they live in Boston!) I still have about 12 tolerable foods. But I am very lucky I still have those things. But I continue to decline and become more sensitive. It is crushing my spirit. I am so grateful for what I have, but frequently mourn for all I have lost and continue to lose. And I fear for my future.<br />
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I have a few other random thoughts. It is amazing how much lack of understanding and disbelief from doctors can damage your psyche. I have never been the same since that started. Certain incidents still flashback in my mind, 15-20 years later. And I still have a wariness/hostility toward a lot of doctors. I try not to. But this whole nightmare of MCAS progressing and not being diagnosed for years, and still not finding viable treatment has made it all so much worse.<br />
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I also have some ideas to share with anyone that has EDS and POTS, but not yet MCAS. Or has mild MCAS or suspected MCAS. Or anyone newly diagnosed with MCAS. Things I wish I had known:</div>
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Get ready to be your own lab rat. No one will have the answers for you. Your body's reactions will guide you to your safer lifestyle, if you pay attention for long enough. Of course, doctors can help with trialing medications and some general lifestyle recommendations. But most of us have to figure out the how to live part on our own. What to eat, which medicines (including the manufacturer) have more positives than negatives, what environmental changes would be helpful. Support groups are soooo helpful for getting ideas of what to try or what might be hurting you. But only you can figure out what will work for you.</div>
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A good place to start is limiting the number of chemicals and ingredients you are exposed to in daily life. In food, medication, personal products, and cleaning products. Keep your routine as simple as possible. Fragrance free is a great place to start. Natural and organic are not always safer with mast cells. A low histamine diet is another good place to start, but again, you'll have to learn for yourself what actually helps and hurts you. It could be salicylates or oxylates or FODMAPS or dairy or gluten, or anything really. (E.g. You may need to eat mostly meat or you may never be able to eat meat.)</div>
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Also, don't waste years with doctors that aren't well-informed about MCAS. They will just be lost years where you continue to progress.</div>
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I would also try to avoid trauma and surgery as much as anyone can. Nothing has progressed my disease like surgeries and inpatient stays. It's hard to say if I regret surgery, because the fact is, my life is no longer in danger from a destabilized skull/spine. But I certainly wish I could have been well fused 15 years ago when I had my first brain surgery, instead of it taking multiple traumatic surgeries over the course of a decade. Who knows what shape I would be in now?</div>
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Finally, it can be hard to read about so many miraculous recoveries, and then what worked for someone else didn't work for you. Most people will improve. Some very quickly, others in time. Some will be able to live close to a normal life. Others will become housebound. We don't all find the miracle combination that gives us some version of our life back. But we have to keep trying.</div>
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Well, I don't know what the point of writing was today. Other than loneliness, and needing to get out some thoughts that have been wandering around my oxygen-deprived brain. It's hard to wish for a Merry Christmas. The fact is, many will have a very merry Christmas. Others will still be sick and in pain and severely limited in what they can do. It is hard to see people celebrating with their families, with their children, making cookies, doing all the things I used to look forward to every year. Tonight, I am watching Netflix alone, like I do most of the time. Hopefully, letting out the negativity tonight will make me less likely to be cranky tomorrow.</div>
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I am very grateful that some people still care about me, even though I can't see them. I am grateful that I have a few people that have changed their lifestyles completely so that I don't have to be alone all the time. I am so grateful for my little Wilma. I think she is an irreplaceable companion (that lets me sleep until noon without making a peep and likes to be a couch potato all day with me...and is also hypoallergenic!). I am grateful for sleep, although not so much when it gives me corneal abrasions, like today. I often wish I just didn't exist anymore. But since I have to exist, I am glad I am not all alone yet.</div>
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Thank you for reading and caring.</div>
Carolyn Medranohttp://www.blogger.com/profile/02811093427920453122noreply@blogger.comtag:blogger.com,1999:blog-833972720679789479.post-56263068047767781952017-10-31T23:26:00.000-05:002017-11-01T00:03:34.629-05:00The hits just keep coming!Well, it's been almost 2 months. I don't have much revolutionary to update. But I will anyway to help me keep track of my progression. I have had a few less symptomatic days, which were inevitably followed by major exposures. This disease does not give me a break. I've also developed a few new sensitivities along the way. In my brain-fogged state, it's really hard to organize my thoughts. So, I'm just going to share the notes from my symptom journal. The journal helps me to pick out the major triggers and pinpoint any changes. I highlight possible triggers. I'll try to summarize at the end, if you feel like skipping.<br />
<br />
September 5-7<br />
<br />
Mostly average days with a lot of GI troubles. Chest burning, random bouts of anxiety, major abdominal bloating, acid reflux, food reflux, fullness, headache, nausea.<br />
<br />
September 7<br />
<br />
I got the correct brand of Omeprazole, but it was an older formulation with more <span style="background-color: yellow;">Red food dye #40</span> in it. I developed manic energy in the evening, irritability, pressured speech, and insomnia.<br />
<br />
September 8<br />
<br />
I woke up after four hours of sleep with a pounding heart, unable to sleep anymore. I had diarrhea and more manic energy in the evening.<br />
<br />
September 9<br />
<br />
I slept about 5 hours. I had burning chest, itching, headache, facial pain, sinusitis, and flu-like symptoms. I was then exposed to the<span style="background-color: yellow;"> smell of barbecue smoke</span> outside. I instantly developed level 7 facial pain, chest burning, and random crying spells.<br />
<br />
September 10<br />
<br />
I finally slept well. But suffered fatigue, facial pain, sinus pressure, and itching. After dinner, I felt burning pain in my chest/back/arms. I had an episode of reduced consciousness with heart fluttering and paralysis. I also developed facial pain and vertigo.<br />
<br />
September 11-13<br />
<br />
I had widespread burning sensation, facial pain, hot face and eyes, and agitation at times.<br />
<br />
September 14<br />
<br />
Thanks to the generosity of a friend, I was able to get the <span style="background-color: yellow;">correct brand of Omeprazole</span> (Glenmark). The dose was only half my dose, but the formula was very similar to my safe version. This pill had no red dye. I had some burning, agitation, and lethargy.<br />
<br />
September 15<br />
<br />
I was feeling more normal, with minimal symptoms! It was such a relief. But of course, short lived.<br />
<br />
September 16<br />
<br />
I was very daring, and tried to attend an outdoor birthday party for my nephew. I suffered severely for it. I was exposed to scents while I was there, even though it was outside. But I also got 3 mosquito bites while I was outside. That day, I developed severe facial pain and vertigo, but I was able to sleep.<br />
<br />
September 17<br />
<br />
The real reaction to the mosquito bites started. My bites became very swollen and severely itchy, and I developed some reactive hives. The hives became indistinguishable to the bites, and were found mostly symmetrically on my body to the mosquito bites. That evening, I developed severe agitation. I then got two different migraines with visual auras. I had insomnia, diarrhea, and severe itching all night long. I slept for 2-3 hours at a time with Benadryl and ice packs strapped to my legs over the worst of the itching.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img alt="https://www.axonoptics.com/wp-content/uploads/2012/11/Screen-Shot-2015-11-03-at-11.25.35-AM.png" height="227" src="https://static1.squarespace.com/static/52994853e4b0a6ba0e3606bc/581bfc3f893fc0a7a30624ea/581bfc40ff7c501f35786f1a/1478229082684/Screen+Shot+2016-11-03+at+8.09.53+PM.png?format=500w" style="margin-left: auto; margin-right: auto;" width="320" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Photo Credit: http://www.raynersmale.com/blog/2016/11/4/pathophysiology-symptomology-of-migraine-headaches</td></tr>
</tbody></table>
<br />
September 18<br />
<br />
As if the mosquito reaction wasn't enough, I started developing a<span style="background-color: yellow;"> sore throat with a fever</span> in the evening (I had been around a few people with colds, so of course, I got it.) With the fever, I was only able to sleep from 8:00 AM to 11:00 AM, once the fever came down. Of course, I can't medicate for a fever in any way, so there was no way to get relief until the fever came down on its own. And any infection at all flares up mast cells majorly.<br />
<br />
September 19<br />
<br />
I had a very sore throat, sinus pressure and pain, excess mucus, body pain, lethargy, time spent passed out. My fever was up to 100.5. Again, I only slept from 8:00 AM to 11:00 AM. All night, I had severe itching, heart pounding/racing, fever, and I needed ice packs strapped to my legs at all times. I went downstairs every hour or two to get new ice packs. I also had frequent urination all night. I took extra Zyrtec and Benadryl, but still couldn't sleep. So frustrating!<br />
<br />
September 20<br />
<br />
After the lack of sleep, and with an active infection and mast cell reaction, I was in absolute misery. Body pain, lethargy, burning eyes, sinus pain, chills/hot flushes, sore throat, weakness. I still had very itchy bites and hives that had become swollen, hard, red, and very hot. The whole backs of my calves were a disaster. I had severe facial pain and headache, nausea, and lack of appetite. My fever went up again in the evening. I also developed a migraine.<br />
<br />
September 21<br />
<br />
My fever finally eased off. I was able to sleep at night and function during the day. I still had sinus pressure and itching, but I was much more content now that I'd slept.<br />
<br />
September 22<br />
<br />
I slept well again, but developed a migraine in the morning. I then had to head to a <span style="background-color: yellow;">doctor's appointment</span> (allergist). The car ride and the foreign environment made my migraine shoot up to a level 8 pain. I had burning chest and anxiety after dinner. I had major bloating in the evening. But I was able to sleep.<br />
<br />
September 23<br />
<br />
Migraine and burning persisted. Cold symptoms persisted. Itching from mosquito bites and hives had finally eased to a tolerable level.<br />
<br />
September 24<br />
<br />
Migraine was lessening. Some episodes of burning. Cold symptoms persisted.<br />
<br />
September 25<br />
<br />
Shorter episodes of burning. Mild facial pain. Cold symptoms persisted. That night, I started a <span style="background-color: yellow;">new brand of generic Ambien</span>.<br />
<br />
September 26<br />
<br />
I did not sleep. I developed severe fatigue, body pain, facial pain, headache, itching, nausea, lack of balance, irritability. There was also an impending <span style="background-color: yellow;">major change in the weather</span>. My cold and burning persisted.<br />
<br />
September 27<br />
<br />
I had to continue with the new Ambien. I barely slept. I had a pounding heart most of the night. I felt on edge, anxious, shaky/jittery, diarrhea, burning face, burning chest, facial pain, diarrhea, tachycardia, and got a rash on my face. This was a classic mast cell reaction to the Ambien. I had to put in an urgent call to local pharmacies and my psychiatrist to get the medication issue resolved. Thankfully, I was able to get my safe brand of Ambien picked up that night, although insurance wouldn't cover it at the pharmacy that was able to obtain it.<br />
<br />
September 28<br />
<br />
I slept incredibly well back on my normal Ambien. I had short episodes of burning that were pretty mild. But I got another corneal abrasion upon waking.<br />
<br />
September 29<br />
<br />
I got a corneal abrasion upon waking in the other eye. There was more mild burning, lethargy, and body pain.<br />
<br />
September 30<br />
<br />
I was exposed to the <span style="background-color: yellow;">smell of hot sauce</span>. I was in another room, but the smell permeated. I had an immediate reaction as if there were smoke. I had wheezing, burning, and vertigo. I had an itchy and restless night last night.<br />
<br />
October 1<br />
<br />
I had very low blood pressure in the morning, so it was very hard to get up. I had more severe burning, anxiety, and brain fog all day.<br />
<br />
October 2<br />
<br />
I had another itchy, restless night with low blood pressure in the morning. (80/45) I had random bouts of anxiety and burning. I seemed to be reacting to all food and medication that day.<br />
<br />
October 3<br />
<br />
Still reacting to the hot sauce. I awoke with pounding heart and low blood pressure again. I had headache/facial pain all day.<br />
<br />
October 5<br />
<br />
I had times with reduced consciousness. I took my Omeprazole 3 hours late that day. I have no idea if it could have caused all of my symptoms. I had heartburn all day, a bad choking spell, itching, burning eyes, red, swollen eyelids, lethargy, and aching. I also somehow injured my left wrist that day, and ended up needing to brace it for a few weeks. (I already brace my right wrist daily.)<br />
<br />
October 6<br />
<br />
There were<span style="background-color: yellow;"> storms and a large drop in barometric pressure</span>. I had severe facial pain all day.<br />
<br />
October 7<br />
<br />
I had fatigue, bloating, itchy eyes and nose and skin on abdomen. My vision was going in and out of focus. I had a prolonged episode of reduced consciousness. I had evening chest burning. I was awake until 3 AM. I required Benadryl for full-body itching at 2:30 and 6:30 AM.<br />
<br />
October 8<br />
<br />
I had a pretty normal day, except for some itching. Overnight, I had itching again, and needed Benadryl at 1:00 and 6:00 AM.<br />
<br />
October 9<br />
<br />
I was generally really out of it. Mild chest burning and bladder pain. I had an episode of overheating followed by reduced consciousness. (Is it really October, and we need the air conditioner?) I then developed a stroke-like migraine. My right eye was drooping. I had headache and nausea, as well as bladder pain. When I developed extreme light sensitivity, I knew I had developed a hemiplegic migraine. I had another itchy night, but I slept well.<br />
<br />
October 10<br />
<br />
I had bloating and swelling of the eyes and upper lip. I had some pretty bad heartburn. I developed severe fatigue and brain fog. I was just staring for hours. Two hours after dinner, I developed heart palpitations and burning chest. The heartburn and reflux kept me up late that night.<br />
<br />
October 11<br />
<br />
I slept late, but well without Benadryl. However, I spent most of the day crying. It was a <span style="background-color: yellow;">stormy day</span>. I developed severe facial pain.<br />
<br />
October 12<br />
<br />
I slept late, but well without Benadryl again. I spent more time crying, and it was really overcast outside, so the facial pain was still pretty bad. I had heartburn, too.<br />
<br />
October 13<br />
<br />
I had a new reaction that day. I had a brief <span style="background-color: yellow;">reaction to the smell of "natural blueberry flavoring</span>" in my husband's protein bar. I developed severe headache and vertigo. Luckily, it eased off once we got rid of the scent. But, that evening, I went into Trader Joe's, and they had put their <span style="background-color: yellow;">cinnamon brooms</span> out for the season. (They will be there for the next 3 months.) I immediately left, but developed wheezing, bronchospasms, itchy chest, mucus, instant headache and vertigo, nausea, and intense facial pain.<br />
<br />
October 14<br />
<br />
I slept well, but there were <span style="background-color: yellow;">bad storms</span> again this day. I had severe facial pain and headache, nausea, malaise, and bladder pain, followed by a brief manic time before bed.<br />
<br />
October 15<br />
<br />
I slept poorly. I had severe malaise, nausea, fatigue, moderate headache and facial pain, and cold painful feet. In the evening, I had severe chest burning. It seemed that I can <span style="background-color: yellow;">no longer tolerate my Thermotabs</span>. They are buffered salt tablets. I take 8-10 of them per day with plenty of water to treat my POTS symptoms, but I have suspected that they have been contributing to my burning chest. It is either just the saltiness with my lower dose of Omeprazole, or it is a reaction to the fillers. Either way, I was pretty sure I couldn't take them anymore. My life will be much more difficult without them.<br />
<br />
I also developed bad muscle spasms in my neck, causing a headache, as well as bladder pain.<br />
<br />
This day was also very difficult on me emotionally, because I missed out on two family gatherings. It was just really sad.<br />
<br />
October 16<br />
<br />
I had headache, nausea, chest burning, and widespread body pain (especially knees, wrists, pelvis, and muscles).<br />
<br />
October 17<br />
<br />
I awoke to another corneal abrasion. My eye was swollen, teary, and red, and I got a runny nose from it. I had to wear my glasses all day, which gave me a really bad headache all day.<br />
<br />
October 18<br />
<br />
Headache, dizziness, fatigue, brain fog. Short episode of a swollen, red upper lip. I had trouble sleeping that night.<br />
<br />
October 19<br />
<br />
Major fatigue and an episode with hot eyes and head (temperature 99.2). I had a decent evening. I got some exercise in that evening. My POTS has been much worse without Thermotabs.<br />
<br />
October 20<br />
<br />
I went on our usual <span style="background-color: yellow;">grocery trip</span>. (I sit in the car while Gustavo goes into Target. I try to go with into the grocery store.) There were no major exposures, but the <span style="background-color: yellow;">car ride</span> felt really rough on me. I developed nausea, body tingling, and a level 8 migraine. I may be done with grocery trips, which have been my only trip out of my safe spaces.<br />
<br />
October 21<br />
<br />
My migraine continued at a level 6, going to 7 or 8 if I move around. I had a puffy upper lip and burning eyes. Migraine was an 8 in the evening. I also had bladder pain and increased pain in my feet and knees.<br />
<br />
October 22<br />
<br />
I had a terrible sleep. There was <span style="background-color: yellow;">rain all night and day</span>. I woke after 4 hours of sleep with low blood pressure and pounding heart. (80/40) My migraine persisted, along with bladder pain. At 2:30, the <span style="background-color: yellow;">smell of a neighbor's cooking</span> seeped into my apartment. Luckily, the weather still allowed me to have the window wide open with the fan blowing fresh air in. And luckily, the outdoor air was fresh. But it was too late. My migraine pain was a level 8 in the dark silence. Pain in my teeth and bladder. I developed a mild fever again, as well as nausea.<br />
<br />
October 23<br />
<br />
I slept great! The weather was better, and my migraine was improved. Unfortunately, there was a <span style="background-color: yellow;">major barometric pressure drop</span> again. A new migraine was triggered at 8:15 PM. It was immediately after a <span style="background-color: yellow;">very brief exposure to some tainted laundry detergent</span>. I literally only got one inhalation of the laundry scent, but ended up with pain level 8. It was technically unscented detergent, but it had been tainted with laundry scent.<br />
<br />
October 24<br />
<br />
I slept well and had an okay day. I still had a low level migraine. But I exercised again at night. I ended up with a lot of body pain (shoulder, wrists, knees, feet, SI joint). I had heartburn at bedtime and midnight body itching.<br />
<br />
October 25<br />
<br />
My migraine switched to the other side after <span style="background-color: yellow;">one inhalation of barbecue smoke</span> outside. Pain was a level 7. I had abdominal bloating and pain, as well as heartburn.<br />
<br />
October 26<br />
<br />
The migraine persisted, causing postural headache and nausea. In the evening, I returned home to where the<span style="background-color: yellow;"> heat had been run for the first time</span>. It wasn't on anymore, but it still irritated my system. I had chest burning, headache, nausea, itching, and bronchospasms.<br />
<br />
October 27<br />
<br />
I had overnight itching, restless sleep, and woke up uneasy. I had nausea and bladder pain. I had to go to a <span style="background-color: yellow;">doctor's appointment</span> (new PCP). There were no major smells in the office, but it was still a foreign environment for my system. When I got home from the appointment, I seemed to be manic for the rest of the day. I was also having tachycardia, and I was really shaky. I also had severe bladder pain/urgency. It felt just like a UTI, needing to urinate frequently. I also had a burning chest in the evening. I remained in a manic state until late at night (early morning, really).<br />
<br />
October 28<br />
<br />
I had a headache in my teeth this day. I had heartburn and milder bladder pain/urgency. In the evening, I felt well enough to exercise.<br />
<br />
October 29<br />
<br />
I had mild heartburn and nausea, as well as facial pressure and excess mucus. I was having bladder retention, too.<br />
<br />
October 30<br />
<br />
I had to go to <span style="background-color: yellow;">another doctor's office</span> (psychiatrist). There were very strong scent exposures. I wore my respirator. But I also kept my winter coat on the whole time. I believe that covering my skin prevented so much absorption of the scent, which lessened the severity of my reaction. I still suffered from pain in face, cough, nausea, vertigo, full body pain and tingling, burning in torso, severe fatigue, pounding heart, bladder pain, excess mucus, and tinnitus. It sounds like a lot, but it honestly wasn't as bad as I expected. But seriously, this office at Lutheran General Hospital is absolutely toxic. All sorts of perfumes and air fresheners and caustic cleansers.<br />
<br />
October 31<br />
<br />
Today, I had a headache and facial pain, level 6. I also had fluttering heart and fatigue as well as bladder pain. Chest burning and worsening facial pain into the evening.<br />
<br />
<br />
<br />
Soooooo.....these months have been full of struggles. The change of seasons brings the migraines to the forefront every time. Multiple medicine formulation changes have really shaken me up and caused me no end of suffering. The reaction to Thermotabs has been especially problematic, because I can no longer manage my POTS at all. The upper respiratory infection and the mosquito bites caused me two weeks of pure misery. Every trip out of my homes has caused me more trouble. Bladder pain has become a much more prominent symptom. I used to always feel the reaction in my face first, but now, sometimes my bladder cries out first. It is not unusual for mast cell patients to suffer from symptoms of cystitis. The lining of the bladder is actually full of mast cells. And mast cell degranulation releases mediators into the urine (this is why it frequently shows up on urine testing). Anyway, inflammation of the bladder lining that feels like a UTI with cramping, pain, and frequent voiding is a common symptom.<br />
<br />
Neurological reactions are always frustrating. I know that plenty of people are misdiagnosed with Bipolar Disorder, and later shown to have complete relief of symptoms with a mast cell protocol. I completely understand how that happens, with my reactive bouts of crying, mania, or panic. I am frustrated that even my good days are pretty symptomatic. I believe if I could go long enough without a trigger, I could get back to baseline. But I haven't really been there in many months. You can't exactly control the weather. And you cannot control which manufacturer the pharmacy uses in any given month. You can try, but you will fail!<br />
<br />
I'm also really distressed that a single whiff of a scent has been triggering severe reactions. It used to be that I was exposed to something, and if I fled, I would be okay. But lately, the first inhalation of an irritant is enough to ruin my day.<br />
<br />
I have tried exercising whenever I am able (maybe twice a week). I'm only doing a few PT moves that should be safe. But I always end up with increased joint pain the next day, making it hard to function that day. I will keep trying though.<br />
<br />
Also, I think it is really notable that my psychiatrist's office was really strongly scented, and I had a less severe reaction than expected. I really attribute it to my multiple layers and long winter coat that I didn't remove, along with my respirator. (I think my husband is right. The only way I could exist in the world is in a scuba suit!) They do make cheap Hazmat suits. I don't know how I would wear it without looking crazier than I already do. But at the very least, keeping my skin well covered may protect me from the most severe reactions.<br />
<br />
I could try to get all of my medications at the compounding pharmacy, but it would be so expensive. Currently, all of my prescriptions are free with our new, expensive insurance. So, paying ~$50 a month for each month would be quite a hit. Also, I still don't know of a safe capsule or a safe filler.<br />
<br />
And I know this should be no big deal, but I have been on a slightly higher dose (1/4 of a pill) of my Remeron since June. It has alleviated the worst of my depression. But it has the unfortunate side effect of weight gain. My diet certainly hasn't changed. My portion sizes may even be a little less, since I've had GI trouble and reflux. And I have gained 9 pounds. I hate it. It's just hard to accept, but it is a choice I have to make for my emotional well-being. There is a whole lot for me to deal with emotionally. It is the only medicine I can take for it, since I can't raise my serotonin levels. And my psychiatrist would like me on a slightly higher dose (another 1/4 of a pill). My PCP says I shouldn't lose any weight, because I am at the bottom of the healthy BMI. But it's still hard to accept 9 pounds of extra fat on your body.<br />
<br />
Also, so far, we haven't run the heat while I'm home at our apartment. We haven't needed to yet. (30 degrees outside, 72 degrees inside) But at some point, I will have to acclimate to it, which I'm pretty sure never happened last year. So that will be another trigger to cope with.<br />
<br />
I don't have any doctor's appointments scheduled, but I'm sure they'll come up. I am supposed to schedule with the next MCAS specialist. She is an integrative endocrinologist. She does not take insurance. But she is local (downtown) and I have heard good reviews from other patients. She has a special interest in mast cell diseases, because she identified her own MCAS. (website: <a href="http://www.integrativeendo.com/specialties/#mcd">http://www.integrativeendo.com/specialties/#mcd</a>) She has been able to manage it well enough to run a medical practice. I believe she will have some excellent input for me. I honestly feel like I already know everything to try. I just don't know what to try next. I'm stalled out after failing so many treatments and progressing to the point that I react to almost everything. I haven't successfully tried a new treatment in a long time. I believe I need to retrial Cromolyn Sodium. I also need to try Dihydroquercetin, which is a supplement. But I am pretty terrified to do it. There are so many unavoidable triggers, it is difficult to add more risks to my life. But, I will be scheduling the appointment sometime.<br />
<br />
Thank you for reading tonight's long and maybe pointless update. I am still so grateful for my safe people and my safe spaces. I would simply give up without them.Carolyn Medranohttp://www.blogger.com/profile/02811093427920453122noreply@blogger.comtag:blogger.com,1999:blog-833972720679789479.post-21955367596977577582017-09-05T19:56:00.002-05:002017-09-05T19:56:56.799-05:00When will this downward spiral stop?Well, I have not taken good notes on my symptoms and medication trials this month. Things haven't gone well, so I've had a harder time caring to record everything.<br />
<br />
It's mostly a blur of symptoms. I did try the compounded Zantac without the capsule and the compounded Ketotifen without the capsule. Unfortunately, I reacted poorly to them. Especially Ketotifen. I took half of the smallest dose, and suffered from the burning in my torso, followed by insomnia with low blood pressure and pounding heart. I could still try the Zantac again sometime, because I only really noticed digestive symptoms, but I am having those every day anyway, so it may have been fine. I definitely react to the gelatin capsule from the compounding pharmacy, but I don't react to all gelatin (Zyrtec Liquid Gels and Benadryl Liquid Gels are considered safe meds for me.) I understand that gelatin for capsules comes from beef or pork, so maybe I tolerate one but not the other. And even scarier, maybe I won't tolerate them for long.<br />
<br />
It also may be possible to have these medications compounded in pure water, and titrate the dose up much more gradually.<br />
<br />
The problem is, I would have to get back to baseline first, and I am currently in a flare, where I am reacting most of the time. I don't tolerate my normal food or medicine or environment.<br />
<br />
This flare started with a trip to the Optometrist to order a new pair of glasses. I have been putting this trip off for a couple of years, because I figured it would be problematic. I already had the prescription, but I needed to order the new glasses. Unfortunately, I couldn't just order online, because I needed a specialty brand, Silhouettes. These particular rimless, titanium glasses are the only ones that don't give me a headache (although I still prefer no glasses for head pain). With my frequent eye injuries, decent glasses with my current prescription became a necessity. So, I bit the bullet and went in a store that could make these particular glasses. The scent was suffocating in the tiny store. I wore my mask the whole time, but it honestly doesn't matter anymore.<br />
<br />
Before the trip to the store, I had actually had 2 good days. I considered myself back at baseline. My digestion still sucked (reflux, bloating, and irregularity), but overall, I was doing okay. Then, on August 26, I went in the store. We took 10-15 minutes to complete the order. I had no immediate symptoms, which was strange, but not too strange. Delayed and prolonged reactions are becoming more common for me. The pain in my face started soon. I did the nasal irrigation to try to rinse out any residual fragrance from my sinuses. Maybe it helped, because the facial pain didn't get worse than a 7.<br />
<br />
However, the rest of the symptoms have been hell. I started developing weird, manic energy, followed by insomnia until 8:00 AM (which is pretty damn impressive with the amount of sedatives I take.) I developed itching and hives on one foot and my face.<br />
<br />
The next day, I developed severe fatigue, malaise, nausea, and body pain. I was unable to do anything all day. I developed burning pain in my chest and upper arms that evening. Facial pain worsened again. I also got bad abdominal pain.<br />
<br />
The following days after the exposure, the burning chest, body pain, headache, nausea, bloating, and facial pain persisted, coming in waves throughout the day.<br />
<br />
I also had a couple more days that week with weird, manic energy and panic at times. Benadryl calmed the mania, so we know it wasn't psychiatric in nature, but mast cell driven.<br />
<br />
Today, 11 days after the exposure, my mast cells are still overreacting to everything. I get chest burning, small bouts of anxiety, major bloating, reflux, fullness, headache, and nausea a lot of the time. My sleep is mostly back to normal, and I haven't felt manic. But I am no where near normal. Until the burning goes away, I won't feel anywhere near normal.<br />
<br />
This burning is such a severe symptom that it has caused me to avoid all pain medications in all circumstances. No matter how bad my pain, I know the burning would be worse than the relief I would get from the medicine. There are a bunch of other medicines I'm also avoiding for the same reason.<br />
<br />
<br />
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So, besides all of this junk, I've been dealing with a new health insurance, which started September 1. I have to arrange to transfer some prescriptions to a new pharmacy, since CVS is no longer covered. Also, they are, of course, going to be 2-3 weeks late in mailing us our new cards. So that has been an annoyance.<br />
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But even more frustrating and scary has been that Walgreens informed me that the only manufacturer of Omeprazole that I tolerate will be discontinuing it. My supply officially will run out on 9/25. And I have reacted to all other PPIs that I have tried. It may be the iron that is added to most of them that I am reacting to. But the crazy thing is, I contacted the manufacturer directly to confirm, and they do not seem to be discontinuing this drug. So Walgreens lied to me. My life is absolute misery without it. But I can't figure out how to obtain it. The pharmaceutical company informed me that they contract with Walmart. So I could try to contact them and see if they are able to order this specific manufacturer. But for that, I would need a prescription, and none of my doctors are helping me right now. I will see my MCAS doctor on the 22nd. But that is cutting it really close, and she is not returning my call, which is weird and frustrating. I don't actually have a PCP right now. It would be excellent to have one, especially if I could contact them electronically. But going in offices is still a major trigger for me, so I keep putting it off and spreading out only the most necessary appointments as much as possible.<br />
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I could also try to get a PPI compounded, although I did not have much success with the last compounded medicine I tried. But obviously, if I react to all but one of this medicine, it is some filler(s) that I am reacting to, not the drug itself. So compounding makes sense, because they can leave out fillers. It's much, much more expensive though. And I would still need a paper prescription first.<br />
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I honestly don't know what to do about this, and I know the closer I get to September 25, the more anxious I will get about running out. I am so scared about it. Why do they have to use so many fillers in everything? And why do I have to react to every building I go in? Why does it have to be so hard all the time?<br />
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I've known that I had MCAS for a long time. I've been dealing with illness for the majority of my life. But now that I have the MCAS diagnosis, it was supposed to get easier. So many people just start Zyrtec/Zantac/Singulair/Cromolyn and feel 1000 times better. So far, I only tolerate Zyrtec and Benadryl (only liquid gel form). But that only manages a small number of symptoms. My itching is so much better! But I am still homebound, reacting every day. Prolonged, overlapping reactions. Never getting a break. And I suffer severe untreated pain most days, which has traumatized me. Every time I leave my home, I end up in severe pain for at least several days, as well as becoming more reactive for a week or more, which has also traumatized me. So I am more terrified to leave the house each time. Most of my time is spent alone, suffering. I don't think I will learn to cope with this until I can find something that helps me feel better. I'm not asking for much. Just one level higher on the quality of life scale would make a huge difference. I know I'll never be able to eat what I want, exercise how I want, go where I want, be around everyone I want to see, etc. Just one degree less suffering would be enough. To be able to spend time with my family that I love and haven't seen in over a year due to scent reactions. To maybe visit with friends on occasion or attend an in-person support group. To just not be terrified of every trip out of the house making me sicker. I just need a little help.<br />
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Unfortunately, a few of my treatment possibilities are pretty much gone. Brand name Gastrocrom is not covered by my new insurance, so I won't get to try it ($4,000 for a month supply). I would need to try the generic version again, this time titrating as gradually as possible. Ketotifen is pretty much off the table (I have a $100 bottle just sitting here that I cannot take.). And Dr. Afrin has become pretty much a pipe dream. He is creating his own mast cell clinic, but it will be considered an integrative clinic and out of network. The first two appointments with him are $2000 each, in New York. Travel on its own is pretty much out of the question. But the cost of visits is just so out of reach for any average human.<br />
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So, I can keep seeing the doctor that knew enough to diagnose me. She is nearby. She is hesitantly willing to help. But she doesn't know what to try next, and really, neither do I.<br />
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The only real things left are Xolair and Gleevec. Xolair is an antibody used to decrease allergic reactions. But it is usually only used in patients with high IgE levels, and mine are fine. (Mast cell reactions are not allergic reactions.) There is some evidence of it working in mast cell patients with normal IgE levels, for unknown reasons, but it is a high-risk medicine. It has a high risk of making me worse rather than better. Gleevec is a chemo drug that has some evidence of helping some MCAS patients. Of course, it is a high risk drug, too.<br />
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And I'm pretty sure my current doctor wouldn't approve either of these for me.<br />
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The only real treatment seems to be trigger avoidance. But honestly, my life is so meaningless like this. I would give anything to get back to baseline. But once I do, I will start to wonder at the purpose of a life like this. A life where I can't see almost anyone or go almost anywhere. A life where I have good reason to be afraid of everyone and everything around me. A life where I mostly suffer alone for leaving the house or trying a new medication. But I think it's better than the alternative.<br />
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Any sane person, if going to Target left them with level 9 pain for 5 days, as well as a host of other symptoms, they would never step foot in Target again. Self-preservation is not a neurosis. It is sanity.<br />
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Sorry to be blathering, but this prescribed life is so tiresome and meaningless. I can only sit in one chair with the right cushion to prevent SI dislocations. I can only sleep on a sleep number bed on a low setting with 4 mattress toppers to prevent shoulder subluxations/nerve damage. I can only drink lukewarm water. I cannot eat fruit, dairy, almost all meat, and honestly most other food. I have a very short list of supposedly safe foods that are only possibly safe between room and body temperature (I literally have to warm up my almond milk to room temperature to eat cereal, or suffer the burning in my chest afterward from the cold). My air has to be free of scents/harmful chemicals and purified constantly. I can wear one pair of shoes with my $500 orthotics that really need to be replaced, and I still suffer from foot and knee pain whenever I'm on my feet. My body has a very limited number of steps and time upright each day. I rarely have the cognitive ability to have a conversation before 8:00 PM. I spend most of my awake time playing mindless games on my iPad, because that's all I'm capable of, and it passes the time. I mostly view life as something I want to get over with. I hate that I am now afraid of crying or laughing to much, because it also triggers a reaction. I am an emotional person, especially lately, so this is hard to avoid, but I have to try.<br />
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I am terrified of the future. I am terrified of the progression of my disease. I am terrified of suffering any future trauma (of which there will be plenty) that will worsen my disease permanently. This will include medical tests, procedures, surgeries, medications, chemical exposures, hormonal changes, loss, grief, and other emotional traumas. If I do have to have a medical procedure or surgery, I will not be allowed pain meds, and pain itself triggers mast cells. If I contract an infection, chances are I will not tolerate the antibiotic I need to treat it. I do not see the point of this life. There is so much suffering and so little outside of it. It is so difficult to find the will to persist and to endure. It is so difficult to find joy with these kinds of life limitations. And the future is so bleak it scares me. I literally try to imagine my dog dying every day, so that when it actually happens, it won't be such a shock to my system. I am terrified of dying when I cannot be in a hospital and I cannot receive almost any medication. As with all chronic pain, my body's capacity to feel pain keeps getting higher. I have no idea how I will ever be able to move to a new home, because I react to all residual scents and nearly all construction/renovation materials, as well as mold and other goodies found in old buildings. I feel trapped in my home and trapped in my body and trapped in this life. I hate that my illnesses make the lives of those around me miserable, especially my husband. He deserves a better life. We both do.<br />
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After all that negativity that I really needed to get out, I still need to acknowledge that it could always be worse. I could be without the people that help me through my life. The only reason I keep living this life is because I could never hurt people that have loved me through all of this. I feel so alone a lot of the time, but I know that I have people that believe in me and care. I know that I am so lucky for that.<br />
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Sorry for the rough update. I wish I had better news one of these times.Carolyn Medranohttp://www.blogger.com/profile/02811093427920453122noreply@blogger.com