Another Progression

I thought this all started in February, but upon coming to my blog, I see that much of this had started in January.

These are the new symptoms:

Heat in knees- using a heating blanket over my legs makes my knees throb and turn red with heat--never felt this before

Fluid in knees- some parts spongy, others firm, restricts movement, stiffness, pain when bent or straight, worst in morning or after inactivity, tender to the touch--all new

Bubbles popping in knees- very painful and limits walking. Actually happens constantly when walking, distorting my gait. When a bubble pops during weight bearing, my leg collapses and I fall and cry out in pain--all new

A few plaques: one on each thigh, back of scalp, and a little on the back/side of neck. Mildly itchy and occasionally stings a bit

A lot of new rough/bumpy skin patches that itch mildly. The first few weeks, I could feel at least one new patch every single day.

Severe pain that started in thumb joint in right hand, but spread to other joints in the hand, lost grip strength, sharp pain on moving wrong

Base of both hands became too painful to use a cane or walker.

Weight loss from 99 to 92 lbs. in March, despite adding a new food (hemp seeds) and calories

Severe upper back pain that has lessened in intensity with extra bedding. It was preventing sleep, waking up in pain. But I became newly sensitized to my bedding (memory foam) that I can't live without. Big source of stress trying to figure out how to keep being able to sleep.

Jaw pain so severe that eating was very difficult for at least a month. It’s eased off but not gone. Does anything ever really go away? It’s all so progressive.

Neuromuscular stuff: Aside from all of this, I seem to be losing access to my muscles at times. My legs are extremely weak, making standing up and walking even more difficult. My right grip strength is also gone. And the apparent impossibility of correcting the vision in my right eye is thought to be due to a muscular issue, where the muscles that help the eye focus are not working correctly. My vision goes in and out of focus a lot, and my right eye cannot be corrected. (I believe this after 2+ hours of intensive eye exams.)

All of my other joints are feeling more strain due to the extreme weakness and compensation. I am quickly becoming deformed.


Precipitating factors:

7 week migraine with brainstem aura associated with the use of our building’s heat. I had to stop using the heat, and that originally resolved the issue with losing consciousness completely around the New Year. But now other triggers are causing these episodes frequently. Frequent repeated and prolonged loss of consciousness with all associated aura symptoms (I’ll describe these another time.)

Neighbor started vaping inside after the new year, and vape fumes fill our apartment (We got a new mega air purifier to help.--It does. But not a cure-all.)

Left the apartment with much more frequency for eye exams and housing search visits. In case you were wondering if leaving home would ease my symptoms.

Various exposures/repercussions

Spike in stress due to the housing search. Episodes of panic and increased anxiety related to this hopeless search and the effects on my body of "testing out" new environments. I have truly hated this fruitless process, and the toll it takes on my body, my wellbeing, and my relationships. Most of the time, I am not even able to engage in thinking about it. And it has made me so irritable and difficult to be around and interact with.

Interaction with medical personnel also triggers high stress.

The time change really affected me, as usual, and I still haven’t regulated since then. It’s such an extra bodily stressor for me.


March 28th: Went on a house visit, car ride on the highway. Never entered the home. But discomfort in the car turned to full body pain on the way home. I used a cane to get to the car, but upon getting out, I could no longer use a walker or a cane due to hand pain. Mobility almost completely gone, as only tiny steps with crooked, stiff legs are possible.

March 29th: I first noticed the fever. Chills and body pain. Skin sensitivity. Heart rate elevated

March 30th: temp reached 100.5. Heart rate frequently elevating throughout the day while feeling faint (up to 100). Skin sensitivity I associate with fever/infection as well as increased head pain, muscle ache, bladder pain, and malaise/nausea. Flank pain and pleurisy pain. Dry cough began late at night. Bad headache. Late night when vitals would normally be very low, heart pounding with elevated vitals. 95/64 p95 even many hours after food. (4:30am) All would normally be calm now on my night meds. But the body is in chaos from the fever.

March 31st: huge pressure drop to complicate things. Fever persisted, high late at night. Cough only appears at night. It feels hard to get a full breath. Same aches and pains and malaise.

April 1st: Even worse, unfortunately, due to various circumstances. Fever, cough, and unbelievable full body pain. Grip even worse. So much aching and throbbing literally from head to toe. Absolutely collapsing in pathetic cries of pain.

The question is if the fever is a cause or a symptom of this flare. Is there some infection I am fighting? Or is there no infection, and this is just an immune freak out? I have been more fatigued and actually falling asleep easier (often before I go to bed), which is highly unusual for me.

This reminds me very much of the time in 2017 when I thought I got a bug bite on my leg. Weird looking one. The doctor didn't want to speculate if it was a bite. Now, I know it looked like a plaque. With it came fever and extreme sacrum pain. Another crying car ride. Probably an early flare in this disease process. Very similar pattern. But again, was an infection driving symptoms, or is the fever part of the symptoms of an immunological flare? Unfortunately, I also have a history of fevers of unknown origin in the last several years, though I think this is my first time since 2020. I've never had a Covid scare. I really am starting to doubt an actual infection.

I have had a plaque here and there over the years that I've documented with photos. I also have had a milder version of knee swelling for almost a decade, necessitating constant compression. But I was still associating it with EDS and the wear and tear of very blatant tibiofibular instability that I've always had. This new knee swelling happened over the course of two days, and the compression is still essential, but can only contain it so much. It is all around and within the knee joints now.

I have always gotten very quiet with high pain levels until now. These various pains cause me to cry out suddenly when I move or grip or step wrong. Very sharp and sudden pains. I’m also less stoic and more prone to random crying spells. For example, sensory overload used to make me zone out, but now I may burst into tears. Frustration at dropping something I won’t be able to retrieve can also cause me to fall apart. I truly don’t feel like myself. I hate this version of me. I don't know how to talk to people, because no one wants to hear that things are yet again even worse. And I'm not really capable of talking about it. Thus the writing.


This deterioration is not sustainable, as I now need help with activities of daily living. Getting dressed and moving items from room to room is difficult. We have brought in toilet rails, sofa rails, a cane, and a walker. But I cannot use the mobility aids with my hands like this. New salt grinder, new pill bottles, shoe horns. Cannot turn a doorknob with right hand. Can barely do it with left hand, which is worsening, probably from over-compensating for my right hand. Switched to using an electric toothbrush with left hand. But I'm even having trouble opening food storage containers (which I need do many times a day) and chapstick, opening windows to ventilate, and opening my water bottle to refill it. Obviously, trying to write is almost futile. My mom has very kindly volunteered to help me start my days, but she shouldn't have to. Instead of hanging out and de-stressing together, I just need help. And I can see that my misery is contagious. Since I cannot contribute to society in any meaningful way, all I have aimed for in years is to try to be a positive force for those in my daily life. That the good outweighs the bad. It's all I can hope for in life. But I am not able to achieve that right now.


These are just the new symptoms. They haven’t replaced anything. It’s all cumulative. Life feels impossible. Very overwhelmed. No intentions of going in the car again, certainly not until this fever/flare is over, if that's even possible. But then I would be too scared of flaring again if it does calm down. I feel a deep depression and a heavy dread and hopelessness. I am in emotional survival mode, unable to think beyond the needs of today. At times, I have focused on the need for an escape hatch by any means necessary. So better to avoid thinking about anything beyond the survival of today.


As usual, there are multiple contributors to this progression, including environmental stressors, emotional stressors, and perhaps an infectious stressor. It seems clear this has been an encroaching autoimmune condition that has never before presented with such clearcut symptoms. Many doctors have assumed there was some autoimmune process they just hadn’t yet identified, in addition to the already identified mast cell disease. The plaques of psoriasis are hard to deny, along with the practically overnight filling of my knees with fluid and extreme pain/stiffness. It all points toward psoriatic arthritis. (Although that doesn’t explain the muscular component) But knowing that isn't particularly useful information when I still can't tolerate leaving home or trying new treatments. I will be facing this at home, on my own, without any medical help, just like I always have to. Medicine has a solid track record of making my life even more impossible. And it goes without saying by now, but in-home care is also not made accessible for people like me. My body overreacts to the slightest assault. I cannot imagine how to go forward. So I won't imagine.

Sinking Ship

As usual, I'm writing because I feel desperate. I can't well summarize all that's happened since I last wrote. I'm just sharing the latest preoccupations that have been bothering me.

Feeling the overwhelm and impossibility of life and future. I have fragments of a life I would like to keep, but I don't know how to hold onto it. It keeps slipping away from me, getting harder and harder to hold onto. My home and quality of life are a sinking ship.

Practical issues:

-The upstairs scent that started January 13 and seeps in strongest into the bedroom. As soon as I had figured out the damage the heat was doing to me, there was barely a break before this issue arose. The air purifier doesn't seem to be sufficient, even in the bedroom (smaller airspace to control). The scent is so strong in there that it builds up over time, even with my best purifier. All of this leading to needing to open the windows often. But the outdoor air is often not safe and is way too cold. But I have no other option when I'm trapped with that scent. I no longer have a safe bedroom, my one safe place in the world, contributing to the ever-growing sense of unsafety in my world. I was down to one safe room, and now I don't have that.

-My bedroom is the only reason I survived the summer. My escape from all the seeping scents. That escape no longer exists due to whatever new scent is being used, presumably coming from above, since it shares no walls with any neighbors, making it more insulated. I cannot survive a summer without the safety in that room. That means that this spring should be my last here in this home.

-The living room air quality is now more tolerable much of the time in the winter, but very difficult to heat with space heaters. The space heaters are overwhelming our electric system, contributing even more to the sinking ship feeling. When the living room fuse blows, I can't fix it myself, leaving me without power and helpless. I can't warm my space. I can't turn on lights. I can't run the microwave/tv/dehumidifier along with the heaters and purifier. And this is all before bringing in the bigger purifier that I am still waiting on. That will use more power. I can only hope that it will allow me to open the windows less, and then I will just give up on heat. But that scent is so much to overcome without ventilation.

-Access to fresh air brings me back to life, brings me calm, brings me peace, brings me energy, brings me coherence, lessens my pain. It proves to me that buried underneath everything, I'm still me in here. But it is not available most of the time and so rarely fresh enough.

-CVS Refill BS-- Causing me so much unnecessary stress. Not even worth sharing in detail. Just absolutely inept people doing their job poorly and making my life so much harder.

-Glasses prescription BS-- I will be going back into the building that harmed me so badly last year. I cannot imagine how I will make myself do it or if I even should. But I feel like I see worse all the time. But how long will it even be before my vision changes again? How long will these glasses last? I've already waited almost a year since the first vision change. When will the left eye change? And how will I go about dealing with that?

-The shower leak is an ongoing and progressive issue. The moldy smell after showers keeps getting stronger. I am not sure how much longer I'll be able to use this shower. I already don't go in there more than I have to. I brush my teeth in the kitchen to avoid time in the bathroom. The mold issue is surely contributing to my progression, although fixing the plumbing leak will not undo the spreading mold damage in there. More sinking ship feeling.

-I will sometime get my computer repair done. I don't want to send my PC away and risk having it coming back scented. But it will get done.

-There is the ACT (Acceptance and Commitment Therapy) clinical trial, although at this point, therapy is feeling more like a luxury than a necessity. I'm already accepting a whole lot of shit about my situation. I'm not sure I have time and energy to devote toward accepting it "better."

My body is part of the sinking ship as well. Degeneration on all sides. My back pain that was made so much worse by a simple exercise is one of the latest examples of this. And that back pain is a result of my fusion causing me to overuse lower parts of my spine, making it unstable. And since then, I've had a drastic change in my knees. Something has gone wrong. They are very difficult to bend past a certain point, and kneeling is no longer possible, but neither is crouching. Getting up off the floor is getting harder.

My body/brain reaction to using the heat for those 7 weeks was a shocking realization. Maybe there is some degree of a gas leak, or maybe I'll never tolerate gas heating. I can never go back to that state though. I cannot go back to the horror of that type of neurologic episode if it can be avoided in any way. But the reality is, any number of things can put me back there. Any number of triggers could cause that type of state. I can't avoid most things in this world, because I have so little control.

The problem with my rectum also feels like a devastating progression. Being unable to pass stool without applying substantial external pressure, I can feel how stretched out it is. Just like my stretched-out bladder, this is a progressive problem.

The migraine being in my teeth/jaw causing problems eating is just another impossible-feeling problem, although my sense is that it will keep moving around. But this pain came with the upstairs scent, which is out of my control and will continue affecting me to some degree for the foreseeable future.

All of this contributing to my current obsession with the analogy of a sinking ship. It seems that a change in housing is the only path forward, but with my reactivity to nearly all humans, fragrance, food smells, heating systems, and building materials (paint/varnish/anything newly renovated) makes this feel completely out of my grasp. But if I cannot achieve it, it seems that that would be my doom. I do not see the path forward. I cannot even fathom how to have smaller repairs done around here, much less face the outside world of all uncontrolled variables. I don't see a way out, and I'm going to drown.

Then, I have my go-to devastating fears and pains that pile up in me and constantly weigh on me.

-Grieving my Wilma. Being without her and her kind of company for the rest of my life. It still stabs me when I think about it.

-Grieving Grandma. I will never stop missing her.

-Fear of intolerable pain with no pain management. I already get close to this quite often.

-Fear of being trapped in the migraine with brainstem aura and disordered consciousness state without being able to eliminate the cause, like I did when I discovered the heating problem. That is not a livable state. That is a degenerative state.

-Fear of untreatable conditions with no preventive care or treatment possible. What happens when I get an ulcer or a kidney stone or a UTI or whatever it may be? Any infection. My tiny circle protects me, but they can't control everything either. My body becomes intolerable when I even catch a cold.

-Loss of mobility and cognition

-The world feeling very hostile to me, since my environment attacks me constantly as well as the people in it causing me harm.

-Having no safe space but with the impossibility of finding a safer space.

-Mom aging is the ultimate doom. Aging is fine, but losing her one day is not survivable.

-I strongly believe that the time will come that euthanasia is my only option, but I don't believe I will have access to it when I need it. And that time feels closer and closer every day.

How am I to go on? I'm cold. I'm scared. I'm beyond tired. I'm trapped. Mostly, I survive one problem at a time, but there's never only one problem. There's always all of these problems, all inescapable. Trapped in this apartment and this body and this life. This sinking ship.

Progressive

I haven't posted in almost 9 months, so there is no way to cover everything and also no way to keep this succinct. It's been a hell of a time.

I'm apologizing ahead of time for the huge mass of words that follows. (I actually cut out about half of the length to save for another post.)

I'm starting with the highlights of my symptom/reaction journal, which I am not super consistent about keeping. But it is helpful for tracking new triggers and to see the progression of everything.

I kind of lost track of last spring. I was dealing with the weather change and my new reaction to my birth control pill. I ended up having to stop taking the pill. This could have been a disaster, having uncontrolled hormones, but with my low body weight, I actually don't menstruate or have much in terms of hormones anymore. (This was news to me! I had no idea I had lost my period until I stopped taking the continuous birth control.) To be clear, I do not have anorexia. If you have video chatted with me, you know that I eat, usually multiple times, during every call. This is because I eat almost constantly every day. The range of what I eat is quite small, but there is no food intake restriction going on here and no calorie cutting. Nothing like that. None. The opposite actually. However, the ramifications of my low weight on my body are the same. So I found this interesting article on the impact of low body weight on your hormones. As expected, it's not a pretty picture. The osteoporosis is one of the biggest long term concerns since I already had that. Raised cortisol and problems with neurocognition are also concerning. The heart complications are worrisome too. Anyway, here's the articles I found about the medical complications of extreme low body weight:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4133106/

https://www.ccjm.org/content/87/6/361

And my BMI is below 15, so I do fit into the category of someone with extreme anorexia.

In addition, last spring began the time of massive disinfection and hand sanitizing. Most packages reek of disinfectant. Most pill bottles from the pharmacy stink of hand sanitizer. Even my potatoes have been touched by sanitized hands and brought the sickening smell of Lysol with them. So I have had a lot of run-ins with disinfectants, escalating my baseline level of reactivity.

My predictions about the warmer weather were quite correct, although I never could have imagined just how bad it got last summer.

In May and June, I was suffering from severe sinus drainage clogging my eustachian tube. Without an antihistamine to dry up all the excess mucus, there was no real solution. The only thing I found was that rinsing my sinuses and lying completely flat  (no pillow) for at least 30 minutes could shift the fluid around enough to prevent the terrible ear aches and popped ear feeling. Unfortunately, there is not a lot of time in my day where I can lie flat without invoking horrendous reflux. So, that was a terrible issue I was dealing with. I tried raising my dose of Omeprazole, but the reflux actually became worse. There is a serious issue of over-correction possible when it comes to stomach acid. So, my only treatment was baking soda water to temporarily neutralize my gut at this time. That ended up becoming a handy trick I've had to lean on a lot. I do wonder if this could be more related to CSF (cranio-spinal fluid), since the clogged ear is a known problem associated with leaking, but there's no way to really know without specialized scans.

Then, I have a list of symptoms and new triggers from over the summer. I don't really know the order of all this nonsense though.

-The fragrance and cooking smells seeping in through our bathroom became intolerable with the heat of summer. We tried everything we could think of to prevent it, but whenever the laundry was run upstairs or cooking was happening next door, the smell filled our apartment. It would literally smell like a fast food restaurant throughout my apartment at times and a laundromat at other times. Symptoms I had were stupor, palpitations, agitation, crawling skin, migraines, trigeminal neuralgia, as well as new sensitivities developing. At least in June and July, I was able to open the window and use the AC aggressively to try to get the indoor air safer. It let in more allergens, too, but that's how I managed it at the time.

Then, August came, and everything became a nightmare. They sealcoated our parking lot and sprayed pesticides outside, so I could no longer tolerate our AC or the outdoor air. I was totally sealed in. So I put new filters in my air purifier, but unfortunately, the new filters had a chemical smell, and that was an immediate trigger. When I used the air purifier or the AC or opened the windows, I suffered from total insomnia and agitation along with massive pain in my head and face. So August and early September were honestly pure torture. No air conditioning. Extremely hot and humid inside. Scents filling the apartment. No way to air out the fumes. I had incessant high level migraines, facial pain, palpitations, sinus allergies, stupors, insomnia, and utter misery. In addition, I ended up stuck in a vestibular migraine for months. This included extreme sensitivity to sound and motion, causing vertigo, tinnitus, pain, body buzzing, and cognitive exhaustion. That vestibular migraine went throughout October as well, and honestly, has still not gone away to this day. I have multiple layers of migraines still, and they all wax and wane, usually from known triggers, including things like weather.

During that horrible time, I developed new sensitivities and failed some trials. I tried coconut milk in my biscuits since I began reacting to almond milk, but it was worse, despite being a pure ingredient coconut milk. It caused me tachycardia, shortness of breath, sudden fecal incontinence, and insomnia. I get the tachycardia and shortness of breath whenever I eat biscuits, but this was clearly worse, so I reverted back to the almond milk biscuits.

I also ended up with biscuits made with baking powder on accident once, and the reaction was very apparent to me. Baking powder (a miniscule amount) caused burning in my chest, agitation, hives, tachycardia, palpitations, and shortness of breath. I just felt really off. Yes, these reactions are getting boring and predictable to describe, but they are no less miserable to go through just because I've been through them a million times before.

I tried using canola oil instead of olive oil on the off-chance that I was reacting to salicylates in the olive oil. The canola oil caused severe lower intestinal cramping (not a usual symptom) with no GI symptoms, followed by heart pounding overnight with nightmares, sweats, and sudden wake ups. My burning mouth went away, but the trade off was too much.

I tried adding cauliflower as a new food. I added such a small amount but ended up with major bloating and loose stool.

I tried butternut squash, and while I can't remember the whole reaction, I think burning and insomnia were involved.

Then, my reactions to my safest version of my biscuits got so intensified in the heat. And I eat my biscuits twice a day, so it's a lot to go through. I tested my vitals one day to document my body's reaction to the biscuits. Before eating the biscuits, my blood pressure was 85/55 with a heart rate of 55. After, my BP was 90/72 with a heart rate of 134. I was in a deep stupor and out of breath for a few hours. And I am still eating those same biscuits and tolerating them some days more than others but always reacting to some degree. I am in no position to reduce any food, so I just have to live with it.

Okay, so the timing of a lot of this is kind of uncertain to me. What I do know is that just as the fall cooling down had started, I had one of my worst reactions in recent times. And it was straight up ridiculous. My body had been through so much distress that I was just primed for something new and horrific to happen. I shared this in a support group with someone else who was dealing with a similar problem:

"I don't even think people would believe how sensitive I am to raw onion. But here goes... My husband was out of town and ate at a meal that included raw onions. He slept out of town and then came home the next afternoon. The moment he walked inside, I began reacting (with the severe burning and vestibular migraine I described earlier). I had to isolate from him for 36+ hours. He couldn't come into the bedroom where I was hiding. The longer he was home, the more the smell of onions filled our living space. It not only stays on your breath but comes out through your pores. He had to sleep on the couch with the windows open. Despite all that, I developed the worst vestibular migraine of my life. It is still severe today. I cannot tolerate any sound. Severe vertigo and tinnitus and trigeminal pain and head pressure. I can't tolerate movement around me. I can't watch TV. The sound of a faucet being turned on and off or the refrigerator running is jarring. I have also had many spells of reduced consciousness (stupor), and my lungs are on fire. Today is day 7. It is absolute torture. Each time I am exposed to onion in any way, I become more sensitized to it."

That reaction began September 13 and went on throughout September and October. This was a very dark time.

I found a little info on the likely chemical trigger for me, based on my experience:

"Allyl methyl sulfide. This compound is released from both garlic and onions when they are cut. Once eaten, the substance is absorbed into the bloodstream, and emitted through the lungs and skin pores." (https://www.medicalnewstoday.com/articles/321334#why-do-garlic-and-onions-cause-bad-breath) I believe I have become hypersensitized to this chemical, like so many others.

I also found this article about food hypersensitivity by inhalation:

https://pubmed.ncbi.nlm.nih.gov/19232116/

Nonetheless, in September, I started experimenting with adding potatoes back into my diet. I started cautiously. I knew I don't do well with sweet potatoes, but I thought gold/yellow potatoes might be okay. And I could tolerate them...sort of. I noted my vitals one time with the yellow potatoes. My blood pressure was 81/52 with a heart rate of 49 beforehand. My body felt calm. Afterwards, my BP was 90/66 with a heart rate of 102. My body felt tingly with an itchy scalp and bladder pain, and my sleep was poor. I tried for a few weeks, but it just wasn't quite working. But I wasn't ready to give up since it was somewhat tolerable. I switched to white Russet potatoes, eating a quarter a potato at a time. I had much less side effects from it, and I have built up to eating a half a potato a day. So I do officially have a new food. In reality, I am reacting after every meal now, so I've also just accepted a greater level of discomfort to follow eating (which is really throughout the day). Some days are worse than others still when it comes to food tolerance, depending on my baseline for the day.

But what I am eating daily is:

oat biscuits

quinoa

broccoli

carrots

potato

Okay.

After a consult with an integrative doctor, I decided it would be worthwhile to work on weaning off of my Omeprazole, despite the deep level of suffering I experience from acid in my stomach and esophagus. I did a 3-day stool test for this doctor, and it determined that I have severe (10/10) gut dysbiosis, and PPI medications are a likely contributor. There's also a documented association between acid suppressing medicines and the development of food allergies as well as drug hypersensitivity reactions. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5464390/) Please read this article if you take acid reducers of any kind: PPIs, H2s, Sucralfate. Unfortunately, these are often used to treat the excessive acid production in the upper GI in mast cell disease, particularly H2s, which are used to treat mast cell disease, even in the absence of acidic symptoms.

I have been on some form of PPI since I was prescribed one as a teenager. Doctors were prescribing them pretty freely at the time without recommending only short term usage. I believe the PPI use could be implicated in a number of my symptoms, including a lot of my GI symptoms. "Ever since this first report, several experimental as well as human studies verified this correlation, demonstrating that acid suppressive drugs not only influence the sensitization capacity of orally ingested proteins, but also represent a risk factor for food allergy patients. Additionally, gastric acid suppression was reported to increase the risk for development of drug hypersensitivity reactions. These consequences of anti-ulcer drug intake might on the one hand be associated with direct influence of these drugs on immune responses. On the other hand reduction of gastric acidity leads to impaired gastrointestinal protein degradation. Nevertheless, also disruption of the gastrointestinal barrier function, changes in microbiome or lack of tolerogenic peptic digests might contribute to the connection between anti-ulcer drug intake and allergic reaction."

https://pubmed.ncbi.nlm.nih.gov/20060064/

https://pubmed.ncbi.nlm.nih.gov/29678362/

So there are many mechanisms by which the PPI usage and gut dysbiosis are promoting both my intolerance to foods and medicines.

So, I started by weaning down from 20mg to 10mg daily. This was my idea. I thought the more gradual drop off would be more likely to stick. These are already low doses of the weakest proton pump inhibitor. Nonetheless, rebound acid and a return of symptoms are common with withdrawal. I decreased my dosage on 10/25, 10/31, 11/5, 11//9, 11/12, and 11/14. Since then, I've been on only 10mg daily. Unfortunately, the return of symptoms has been severe, making it even more challenging to eat. My gut burns. I get reflux up my esophagus into my mouth. I have severe bloating. I have a metallic taste in my mouth with burning and foul breath. The burning pain in my chest radiates outward with nerve pain. And frustratingly, I have to stay awake even later than usual to allow my body to digest enough to be able to go to bed. I am routinely up until about 4 AM now. The baking soda helps, but I try to take it as little as possible since the whole goal is to have more stomach acid, not less. It is frustrating and painful.

I still have a long, miserable way to go to wean off fully. I was waiting for the symptoms to subside before I start the next wean, but it doesn't look like they will. So the next plan is to skip my dose every 14/13/12/11/10... days until I am off of it. I don't know exactly when I will start, but it doesn't look like I will be able to wait out the symptoms. They are honestly getting worse as time passes. It would be so much easier to just go back to my usual dose and get some relief from literally constant heartburn and reflux. (I go to bed with it, and now I wake up with it too.)

The thing is, I am being persistent about this (despite deep-seated fears of untreatable ulcerations and esophageal cancer), because I believe it could make an actual difference for me in the long term. So far, I have already noticed improved sleep and decreased need for laxatives. It could be the source of my chronic constipation. It will be a 3+ month weaning process with lots of misery, but I don't really see any choice. I am not really willing to try any other recommendation made by anyone. So this is the misery I am choosing, I guess.

Okay...back to my diaries. November had some pretty big hits as well, besides the acid misery. Some massive pressure drops put me into a full-on pain crisis multiple times. Widespread burning, massive abdominal bloating, headache, severe lumbar and sacral pain, decreased mobility, bladder dysfunction, interrupted sleep, trigeminal pain, eventually full body pain. It lasts throughout the night when it happens. Just utter misery.

I had another worse-than-ever reaction to intimate activity. More genital pain than I had imagined possible before this. So the vulvodynia has spread to include clitorodynia. TMI. I know. But someone out there just might read this and deal with the same thing. My severe abdominal swelling has also not stopped since that day in November, although I think it is finally lessening.

Then, right around Thanksgiving, I had to test a different brand of clear cellulose capsule because the one I buy was sold out. I use these to take my magnesium, which is the only way I have GI movement. These are both made from cellulose turned into HPMC (hydroxy propyl methyl cellulose). Unfortunately, the different brands are clearly not all made alike. I even confirmed before purchase that the ones I bought were one of the "cleaner" brands in how they are processed. The new brand I tried, Solaray, is made of HPMC and water, no preservatives, additives, or excipients. What more could I have done?

More info on capsules: https://clearandwell.com/what-are-capsules-made-of/

Anyway, the capsule immediately tasted like Lysol, so I initially spit it out. But I knew I had no alternative since my safe brand has been almost completely sold out for the last 6 months, so probably discontinued. So I wiped off the capsule and then swallowed it anyway. I was on a video call at the time, and continued with the video call, despite some crazy symptoms. I immediately got the head pressure and tinnitus, burning chest, adrenaline rushes, and progressed to burning eyes, itching, tingly bladder, mouth burn, a migraine aura, body buzzing, and a level 8 headache. I couldn't sleep. My acid symptoms were much worse. This went on for about a week.

December brought with it new reactions to airborne food exposures. Because this disease is freaking relentless. It does not let up. So if one thing lets up, something else gets to me instead. So, I've been reactive to the smell of fresh ginger for a while, but my husband has gotten in the habit of immediately throwing it in a ziploc bag and into the trash when he buys his prepared sushi (one of the few foods he can eat at home). Unfortunately, this was no longer enough to prevent the burning pain in my chest and mouth. The smell of pastrami causes the same reaction. Same with whiskey. And these are lasting reactions. Days if not weeks. Not just a few hours. I also started reacting to particularly fragrant apples, even if they are stored in a ziploc bag in the fridge. That causes migraines. Then, the newest one is an airborne reaction to peanut butter. It's probably been going on for a while, but I just finally put it together. I've had really random days of severe sinus allergies with large amounts of mucus produced, intense itching, and the high histamine levels keeping me up all night. (And obviously not being able to treat my allergic symptoms or high histamine) But now I seem to have put them together as a cause and effect. The longer I am exposed to the peanut butter, the worse the histamine reaction. So that's a whole new ordeal in an endless string of ordeals. So, so, so much of the burden lands squarely on my husband's shoulders. Yes, I suffer the symptoms. But he has to watch me suffer and decline in addition to making huge changes to his life to try to protect me from my own freaking mast cells. And he has been doing an amazing job of not making me feel like a burden, even though I know I am. I am so fortunate to have him.

In addition to new sensitivities developing, I still constantly deal with ongoing sensitivities. The biggest ones that come up in daily life and invade my home are smoke and skunk. I have severe and prolonged reactions to both. I get into the worst trouble when I try to ignore the first hints of the irritants in the air. When I'm being smart, I run to the bedroom at the very first sign of either one. If I'm lucky, the bedroom air will not yet be contaminated, since it's around a little corner. The airspace is somewhat protected. But just a couple nights ago (you know--when the world was turned upside down), I didn't make it to the bedroom in time. So I had to stay in the bedroom with the air purifier cranked and wearing my respirator. The migraine was already well underway, and wearing a respirator pressing up against your trigeminal nerve and squeezing your sensitized scalp does not help! I never know the source of the smoke, but I assume it's usually grilling, and if it goes on for hours, I assume a bonfire. And those people will never know the amount of suffering brought on by their air pollution. We have sealed the apartment up in every way feasible, but plenty still gets through.

So what's next?

I am very concerned that I will not survive another warm season in this apartment with the air seepage and lack of access to AC. It is especially ominous now that our neighbor has moved out, and new neighbors will presumably cook much more often than our elderly neighbor did. And who knows? They could use some heinous scented products that get into our place year round instead of just in the heat.

So I suppose my new year goal has to be to seek out that needle in a haystack home. Many people in my situation end up homeless when their one safe place becomes unsafe, and they cannot find another. I read about these struggles daily and truly cannot imagine it given my level of pain and my body's incredibly high demand for comfortable everything. That is one of my worst case scenarios--being forced to live out of a car or a tent or survive in a place that is much more hazardous to me. So I will not leave this place behind unless I actually find another place that is at least as safe and can be made safer. At least right now, I have a safe room. My bedroom is nearly always my safest place. I feel immense dread of the search because even a brief exposure to a different environment can cause a setback for months. (The cascade) So even testing out a new apartment by visiting is dangerous. (See the disaster of 2014 and the varnish...NOOOOO.) But medicine has failed me. All I can do is react and adapt and avoid and try to stay safe. So I will have to look for my new safe. I honestly only have one place in mind to try, so my hopes are kind of all in one place. If that doesn't work out, I know that the situation will become desperate by this summer. Just because I technically survived it doesn't mean I could do it again. I have lost so much. I have become a skeleton. I have become so much more reactive than I ever thought possible.

Well, there's what I've been up to and what's been on my mind. When all this is what's been going on, it can be really hard to just "catch up" with people. I don't have much else to talk about. My illness is so pervasive that it dominates most of my life. I try my best to have more going on, but more often than not, symptoms take over. But no one wants to hear about this, and I don't really know how to explain it briefly (as evidenced by this post). And I usually don't want to talk about it either. So it's on my blog now. I don't want to think about it anymore. I'll take notes when I need to, and I will save the rest of what I've written to share another day. And hopefully I'll get back to you much sooner this time, because this was a ridiculous undertaking to write this blog. Or I'll just stop writing completely, because giving up is sometimes okay too.

I hope you all stay well. I actually do care. Even if I don't usually have the capacity to reach out and connect. I do care.

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.

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
holidays
public places
visiting at people's houses
attendance at funerals and weddings
seeing most of my loved ones
hugs
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
insomnia
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)
lethargy
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
diarrhea
crawling/tingling skin
trigeminal pain
stupor
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.

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!