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.

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.

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!

Taking advantage of the hypomanic reaction

Time is a strange thing when you live with constant sickness and pain. Everyone talks about time flying, and they can't believe it's already been a year or ten years since some milestone. Well, I can't really relate to that feeling at all. Since middle school, I have always dreamed of having a remote control that could fast forward through the bad parts. The problem is, there wouldn't be much left. (Yes. I know they made a movie about this.) It is just so difficult to see people building lives and moving forward, having kids, and watching their kids grow. I'm sure that would make time seem to fly. I'm sure it would make life seem more worthwhile too, more fulfilling, more meaningful. I mean, the only way in which I would want time to slow down is in the aging of loved ones. But I want to slow down aging, not time. Time is slow and torturous. I guess the saying, "Time flies when you're having fun," works in reverse as well. Time drags like hell when you never have fun.

And my life is really not fun. I try to find little snippets of fun or happiness or even joy and hold onto them, but they are so few and far between. It just feels like an endless uphill climb, or a downward spiral. It seems strange that going downhill and going uphill are both pretty bad things. Like, if an uphill battle ("a task that is very daunting from the outset and continues to be challenging" - https://idioms.thefreedictionary.com/) and a downward spiral ("a situation in which something continuously decreases or gets worse" - https://www.merriam-webster.com/) are both really bad. You really don't want your life going either way. This suggests to me that many of us really desire stability. We desire homeostasis. And an unpredictable illness takes away any sense of ease or comfort in your situation.

Why so loquacious tonight? Well, I'm currently having a reaction that is causing over-stimulation. My brain is racing, and my speech is pressured. I feel so agitated. And that's all on top of the mind-blowing pain and burning. So I decided to write it out tonight while I actually have something to say. (Most of life is in a fog, so at least this brings things into focus for a bit.)

This last month has been hard. And whenever someone asks me how I'm doing, that's how I usually answer. It's the least pessimistic answer I can come up with that is still honest and genuine. But this last month really has been a challenge. Three hospital-based doctor's appointments in under a month. That's way too much outside exposure for my body to absorb and tolerate. But they needed to be done, each one of them.

First, I saw Dr. Barboi's PA. He is my autonomic neurologist that specializes in dysautonomia/POTS. But he is too busy to see follow-up cases anymore, so I saw his PA. She was nice and interested and pretty thorough. It was just an annual appointment so that I remain his patient. And I need to remain his patient because he understands my illness, and there may come a time that I really need his help. So, we were inside the hospital for two hours. I wore my respirator the whole time. This thing is ridiculous-looking, but it really does help me with one thing. It prevents the severe facial pain and headaches that I get whenever I'm in public. It's not perfect, but for that alone, it is worth it. The more I can prevent that pain, the less prone I am to the next trigger for the pain. So I can go longer without having any facial pain, sometimes a week or more at a time. Usually the weather or some unavoidable trigger ruins it, but at least I can avoid it when I go to the doctor. Unfortunately, I still suffer the rest of my symptoms for weeks following the appointment. I can only protect my trigeminal nerve, really.

Anyway, nothing in particular came out of this appointment. Honestly, it was the same as last year. Dr. Barboi wanted me to see Dr. Tobin and wanted me to try the chemo drug called Imatinib.  I also got my handicapped placard renewed. That was it. But I have portal access to him for the next year, so that's worth a lot.

A week later, I had my long-awaited appointment with Dr. Tobin. This was quite an ordeal. It was a morning appointment in Oak Park. I don't do mornings. So I only got four hours of sleep the night before. I was a wreck. There was a wait inside a smelly waiting room. Even though I can't smell most things through the respirator, I can still literally taste the disinfectant smell in the air. The taste lasts all day. It's crazy, I know. Believe it or not. But it happens every time. And every hospital has that same disinfectant everywhere, filling the air. Anyway, this time was three hours inside the hospital wearing my respirator. I spent a long time talking through my history and my symptoms with the fellow that I saw. She was also very nice and interested and thorough. I felt that I explained everything pretty well.

Dr. Tobin came in at the end, and she definitely believes I have the right diagnosis. But she was not particularly optimistic about my treatment. Not hopeless, but not hopeful. I appreciate that actually. Don't get my hopes up so high just to be dashed again. Basically, she has a few ideas that haven't been tried yet (although certainly nothing novel to me--I know this stuff like the back of my hand). The conclusion of the appointment was that we were going to repeat some labs (I have gotten most of the results back. Same elevations in blood and urine indicative of a systemic mast cell activation disorder), and that we were going to trial a compounded medication that I haven't tried before. It is in the same class as Singulair (asthma medication), but a different drug. We will get it compounded to avoid fillers and start with a lower dose than usual. It won't necessarily make any big change in my condition. It almost certainly will not. But if for some reason I can tolerate it, we could start "chipping away" at my hyperactive mast cells. Basically, that's her approach, to keep trying things little by little and see if we can chip away at this illness that is wreaking havoc throughout my body.

The only problem that has come up is that so far, no compounding pharmacy has access to this drug. They are not able to compound it. So it may be a dead end. If it is, she had a few other ideas, but none that I'm especially excited about. Maybe a medicine for nerve pain, like Gabapentin. But I haven't had luck with it in the past. Lots of side effects for little to no relief. And it would do nothing to actually stabilize my crazy mast cells. Maybe aspirin (which doesn't seem smart long-term). Maybe regular IV fluids (which is hard on the veins). Maybe even IVIG treatment (but I don't really want to strengthen my immune system. I don't even get infections easily.)

A great thing that came out of this appointment is that Dr. Tobin and Dr. Barboi are now consulting together on my case. They may share ideas with one another. And those are two brains that I definitely want on my side. They both agreed that my burning pain I get, often in my torso, but also in my face, in my mouth, in my eyes, and in my crotch are a form of neuropathy. Not typical small fiber neuropathy or peripheral neuropathy, based on location, but still neuropathy. Atypical, as usual.

Those were the big appointments. And oh man, did I suffer for them. My list of symptoms in the two weeks following the appointment at Rush is a page long. To summarize, I had widespread burning, itching, deep cough, headache over my eyes, palpitations, body pain, nausea, bladder pain, tachycardia, diarrhea followed by constipation, a rash, hair loss, crawling skin, lethargy, brain fog, and gastroparesis. Those were the big ones. All because I spent time in a doctor's office. I was grateful that insomnia did not accompany this reaction, and neither did trigeminal pain. But it was still absolute misery.

And as usual, as soon as I start feeling like I could be getting back to homeostasis a couple weeks later, I had another appointment. The last one was just a check-in with my psychiatrist. It went fine. No changes in meds, like usual. Thankfully, he agreed that we can scale back to 6-month appointments instead of 3-month. Our insurance is not covering any of the visits, so it's a relief for more than one reason that I only have to go twice a year instead of four times a year as I have been. Too bad he's a resident, so they only stick around for a year or two before I have to switch again. I like him. I wish I could see more of him, but like most things in life, that's just not an option.

So, I had a horrible weekend following this appointment. The usual terribleness, with especially bad lethargy and brain fog. I was practically catatonic for a lot of the weekend. Then, Monday came, and I felt a bit like a human again. I actually felt pretty great for me. So, it was really a good time to seize on the chance for a trial visit with my brother. He and I are very close, but we have barely been able to see each other in the years since my mast cells lost their freaking minds. But he has put in enormous effort to be able to visit with me again. He has changed his entire routine. He uses all fragrance free products that I know are safe for me (because they are also used by either me or my mom or my husband or my stepdad--my safe people). He also freaking quit smoking cigarettes for me (and for his health, too, I assume)! I mean, that is dedication.

I wanted so badly for it to go perfectly and for me not to have a reaction to being near him. But of course, my mast cells had other ideas. The fact of the matter is that I have become so incredibly sensitive to so many things, but especially laundry products, that I just can't be around almost anyone. Clothes (and skin and hair) hold onto so much scent. And laundry products these days are, like, military grade. They are incredibly sticky scent molecules, and they basically never wash out. Not enough for someone as sensitive as me. And every exposure seems to lead to a worse reaction. So, I started feeling the pressure in my face and a sore, scratchy throat. I could also taste the very faint laundry smell. To be clear, he uses a fragrance free detergent and no fabric softener on all his clothes. It just isn't enough to wash away the old scent molecules. I ended up with quite a reaction. I went up to my bedroom to escape and deal with the fall-out. The trigeminal pain has been around an 8. I've had excess mucus and a sore throat. I've had burning (neuropathy) in my face, my lips, my eyes, in my mouth, and in my crotch. (Pain level 7-8). It then progressed to agitation, skin crawling, pressured speech, racing thoughts, nausea, global head pressure, and vertigo. I am in an absolutely miserable state. And it's only been 8 hours. Who knows what will come in the following days? Surely, a crash into lethargy and prolonged symptoms. All from some barely there laundry product residue. This stuff is literally poison to my body. I am poisoned.

Worst of all, this stuff is everywhere. It's the main reason that I can't see most people. It makes walking outside hazardous because every house and apartment has this stuff pumping out laundry vents into the air every day. We have a plan to try again. We will buy him a set of clothes to wear and be washed at mom's house only for our visit. This will eliminate the laundry product residue problem, and maybe we'll finally be able to see each other again. Maybe. I don't trust my body at all. But we will keep trying because it matters. Relationships matter. And I'm trying to salvage the ones that aren't totally gone and maintain the ones that matter so much. This illness is so incredibly hard on my loved ones. My husband deals with so, so much. He shares so much of the burden with me. He has to cope with so many of the same losses and limitations. Our life barely even feels like a life sometimes. And he keeps pushing through, keeps making accommodations, and stays by my side. It is hard to know that this illness brings so much pain to anyone that I am close to.

Life feels like a series of landmines to either be avoided or survived. It's one thing after another. Seriously. My pillow picked up a scent from my car, so I washed it, like usual, in fragrance free detergent (Biokleen). Well, after that, it smelled like chlorine. I have washed it and soaked it in vinegar, in baking soda, in vodka so many times. And it is still not totally gone. (You would be surprised how useful cheap vodka can be.) I don't know how it happened. I guess I'm looking for a new detergent again. And a new pillow. New anything is really a landmine.

Then, there were ants. Our apartment got infested, and I was having to vacuum twice a day to keep them away. But I react to the vacuum because it smells like burning rubber. These particular ants seemed to sting me. I mean, the ant attached itself to me, and it felt like a bee sting and continued stinging for at least an hour after the bite. Then a welt would show up the next day. I don't know what kind of crazy ants these are. So, we tried all the natural methods but eventually had to spray with bug repellent. No scent, but still unknown if it contributed to my symptoms. It certainly adds to the chemical load. I wasn't there for the spraying. My hubby does things like that while I'm away at mom's during the week.

Our apartment is generally bad for my health. I am generally sicker there, although I do better when there is fresh air outside, and I can ventilate like crazy. Basically, I do best when the apartment is a wind tunnel. You know you want to live with me. (Don't forget about the extreme food and cooking and product restrictions!)

Then, there's doctor's appointments and weather systems. I react in crazy ways to weather at this point. Climbing pressure, dropping pressure, too high pressure, too low pressure. My body wants none of it. It used to be just migraines, but now it's multi-systemic. Again, my body craves stability, but rarely gets it in Chicago. So, you see how life is just a series of landmines.

And dealing with these constant landmines makes my life chaotic but basically really boring. I have almost nothing to talk about outside of illness. I feel like I've written versions of this same blog post a million times for over a decade. It's hard to have much of a personality when nearly all your time is spent avoiding and suffering. I'm not independent, and I don't really have choices in life. I'm really hoping to catch up with some loved ones by video chat soon, but finding a "good" time is really difficult, and I'm afraid I have nothing interesting to talk about.

In addition to dealing with my own decline, I have been busy trying to care for my declining elderly dog, Wilma. She is my little sweetheart. But she is suffering from dementia. It is so difficult to watch her suffer. I try to help her to be happy and feel safe, but life is hard for her. She is often scared and confused. She gets lost and stuck in strange places. And late at night, she gets so agitated and cries. I have to rock her to sleep in my lap. But I know I won't have my little girl forever. I love her so freaking much though.

There's another thing that makes talking with people difficult. I don't know many other childless people. Basically, everyone has kids. Now, I'm not jealous of sleepless nights, but I am jealous that people can survive those restless nights and still care for and raise their children. I know. Envy is not a good look. But really, it is heartbreak. My heart is broken that I will never be a mother. Not that I want to pass this disease along or have a child that I am too ill to care for. But a childless future is incredibly bleak. I always knew I was going to be a mom. I used to write diary entries to my future daughter. I knew I would be a good mother because I would remember what it felt like to struggle at different ages. I knew I would try to be just like my mom was to me, a constant supporter and best friend.

So it is really hard to see pictures and videos of friends with their children. I am incredibly happy for them and absolutely amazed at how they rise to the challenges of parenthood. I am so happy that they have made these little humans and they get to raise them. It is so beautiful. It makes me cry more than anything else though. More than watching people climb mountains and run marathons and go on vacations and have adventures and celebrations. Even more than seeing the food that people are able to indulge in while I sit here with my 8 "safe" foods day in and day out. I even struggle to watch TV shows where someone gives birth. It makes my life feel empty like almost nothing else. What is this life? Why is this life? That's a question I know better than to ask. There is no why. It just is. I know that.

Well, I can't believe anyone has enough time in their busy lives for a blog entry this long. But for any of you who do make time, thank you for reading the product of my racing thoughts. I am so grateful for all the support I receive. I know how incredibly fortunate I am. Many people in my situation end up alone in the world, living in total isolation. I do not take a single person or message or word of encouragement for granted.

What Not to Say to Someone Who is Suffering

I wanted to share with all my blog readers a video that I made for my mom's church. The pastor was kind enough to ask for my input on how to handle the suffering of a loved one. It was emotional for me to write this piece, and a bit of a challenge to record. I was having a migraine and in a bit of a fog, but that mental dullness probably helped keep me from breaking down and sobbing near the end.

Please keep in mind, I can't set any universal standards for what you should or shouldn't say to someone you love. It's all so subjective. But having been sick this long, I certainly know what I have heard repeatedly for so many years, and what tends to rub me the wrong way.

Since I know mostly my family and friends will watch this, please know that even if you have said one or more of these things to me, it doesn't mean I took it the wrong way or that I'm mad at you. I know that all of these things are well-intentioned when they are said, and I would never hold it against someone that they didn't say exactly the right thing. Any and all support is truly appreciated.

On the medical front, I have several doctors' appointments coming up which I am truly dreading. (I dread every appointment, because they make me sick for so long.) But please don't get your hopes up! I am going in with an open mind, but not expecting much to change. But I am open to any and all potential improvements, obviously.

As always, thank you for reading (and watching), and thank you for still caring after all these years.