Tuesday, April 21, 2020

Chronic Quarantine

It 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.

This is a photo of me while suffering from migraine/trigeminal pain, showing the asymmetry.

I don't know how coherent this post is since it's been written in so many parts, but I'm sharing anyway.

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.

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.

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.

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: http://annmccampbell.com/covid-19-and-chemical-sensitivities/

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.

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:

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Here's another one that shows the flushing.

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!

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.

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.

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.

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.

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.

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.

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.

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.

Thursday, February 13, 2020

Fragrance-Induced Suicidality

Yes, 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).

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.

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.

I was inside for about 45 minutes. That was apparently the absolute fastest they could get me in and out for a simple swab.

(By the way, I wore my respirator the whole time.) Here is how the reaction progressed:
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.

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.

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.

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.

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.

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.

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.

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:

"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.

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.

I don't want any visits. I don't want any company. I need to die. I need it to stop.

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.

I don't want to problem solve. There is no solution. There is no way out of hell.

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.

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.

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.

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.

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."

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.

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.

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.

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. https://www.sciencedirect.com/science/article/abs/pii/S0149763417300295

"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."

Next, this article focuses on more common diseases that can cause neuroinflammation, but it explains the association between neuroinflammation and depression: https://www.researchgate.net/publication/299342763_Disease-Induced_Neuroinflammation_and_Depression

"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."

Finally, this article specifically focuses on how brain inflammation as the underlying cause of suicidality in major depression:


"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."

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.

So, there's my case. (Sorry for the mini lit review. It felt important to include.)

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.

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.

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.

So, my next psychiatry appointment will be over the phone (thank to my mom pleading my case).

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.

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.

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.

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.

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:

Oat Flour Biscuits

Makes 45 biscuits

Preheat oven to 350°.

Whisk these together:
2 cups almond milk (or try another milk)
2/3 cup olive oil (or try another oil)

Add, using hand mixer:
4 cups oat flour (or try another flour)
1 t. salt (optional, for taste)
1 t. baking soda

Mix well. Drop by spoonfuls onto baking sheet. Bake for 9 minutes. Remove to rack to cool completely.

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.

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.

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.

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.

I do not post these blogs looking for sympathy. I just hope to promote better understanding.

As always, thank you for reading. Thank you for caring.

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

Wednesday, January 8, 2020

The never-ending flare

MCAS 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:

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).

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.

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.

Previous sacrifices I had to make (let's say late teens through early 30s):
using a wheelchair as needed
giving up going to the gym
giving up going for walks for exercise
days in bed to recover after a night out
only very basic, restful travel
less food choices
giving up shoes and hair/cosmetic products
I could make careful plans and only have a 50% chance of canceling.
I could only run a short errand independently when feeling up to it.
I could never work as much as I wanted to or support myself.
I could not have a child.

Most of those seem trivial now. The types of sacrifices I have to make now:
the ability to cook/be around most food
public places
visiting at people's houses
attendance at funerals and weddings
seeing most of my loved ones
leaving my condo
access to medical care and pain/symptom management
most medicine
access to emergency care
being able to meet my nutritional needs

I have learned to dream smaller and accept less and less of this life.

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.

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:

trialing hard-boiled eggs
a new reaction to yellow dye in medication
exposure to cooking smells and smoke smells
the severe pain of my herniated/ruptured disc injury in June (level 8-10 pain)
storms/barometric pressure highs and lows
the chimney smell and the smell of the chimney treatment
high stress/grief/sobbing

The symptoms I was experiencing regularly from these triggers were the following (also a good summary of my symptoms in general)

severe pain (localized and generalized)
burning chest/face/eyes/crotch
insomnia (yes, a trigger and a symptom)
brain fog
agitation/manic energy
severe itching of the nose/eyes/throat/chin/surgical area at the back of my head/neck
raw tongue
pounding heart
crawling/tingling skin
trigeminal pain
migraines with auras (At one point, I had a migraine 86 of the last 90 days)
repeated syncope while supine (not related to blood pressure. At another time, I had 3 migraine auras in 24 hours.)
shortness of breath
hot flashes
waves of goosebumps

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.

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.

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:

"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.

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.

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."

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.)

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!

Sorry for another long essay. I have just been unable to write/think or been busy distracting myself.

I will end with the note I wrote on Thanksgiving:
"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."

^^^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:

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.

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.

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.

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: https://www.mastattack.org/2015/03/allergic-to-infections-how-bacteria-viruses-and-fungi-activate-mast-cells/.)

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: https://www.mastattack.org/2015/04/circadian-rhythm-of-mast-cells/.) I have the worst of my itching and histamine symptoms overnight, which often prevents sleep until nearly sunrise.

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?

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.

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.

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.

It's also very scary to know that I have some trips out of the home coming up:

I have to see my psychiatrist in February.
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.)
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!)
I clearly need to see my gynecologist, but I don't know when to fit it in.

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.

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.

Thanks for reading. Thanks for caring.

Monday, August 26, 2019

Dark Times

So, 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.

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.

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.

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.

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.

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. https://www.pharmacytimes.com/resource-centers/eye-care/eye-catching-study-the-truth-about-benzalkonium-chloride)

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.

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.

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.

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.

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.

So what is the worst thing about living with mast cell disease for me?

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.

But I certainly fear the loss of food after exposures too. As well as the lack of medicines that I tolerate, making improvement impossible.

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.

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.

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.

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.

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.

I fear that my marriage cannot survive me being this sick much longer.

The massive untreated pain is up there with the worst parts of this disease too. It's hard to choose what is the worst.

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.

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.

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.

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.

Wednesday, July 10, 2019

When it rains...

I have a ton to write about, but honestly, I will forget most of it due to more pressing issues.

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.

And that's just been one ongoing issue.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

I cannot really write more or even proofread tonight because I cannot risk my neck in this position any longer.

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.

Monday, May 6, 2019

6 weeks later, and so much lost

Well, 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.

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.

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.

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!)

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!

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

So, a few assorted thoughts, and then I'll go.

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."

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."

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.

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 medical gaslighting 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.

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.

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: https://blogs.psychcentral.com/hidden-disabilities/2019/05/toxic-positivity-its-a-thing/)

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: https://www.medicalnewstoday.com/articles/321884.php

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.)

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!