Friday, March 5, 2021

Doom

I'm hoping to make this a quick entry, since it's 3 in the morning. My days and nights are pretty fully reversed now. I'm typically in bed from 5:00 AM until 2:00 PM. Always trying to do better, but being able to get quality sleep while I'm there is what really matters.

I'm still having the awful acid symptoms forcing me to stay upright during the overnight hours. And this is even after decreasing my food intake (and losing a few hard-won pounds). And I still have the final wean off of the Omeprazole to come. With such severe acid, I just haven't been able to get myself to start the next wean. I don't know if my body needs more time, or I just have to accept the erosion of my esophagus. Overnight, I'm also just awake. It's when my body wants to be awake. At least for now, I'm often sleeping pretty well. Although lately, so many things have been trying to steal my calm.

The winter has had its challenges, but honestly, it's been such a huge relief to have a continued break from the laundry and cooking fumes that tortured me for half of last year. And the cooler temperature is hard on my feet with Raynaud's, and it can be hard on my body pain, but it is so amazing for keeping all fumes from seeping into our apartment. It's truly been amazing. I don't know how much of it is that the neighboring apartment is still empty, from what I can tell.

I have struggled with body pain a lot, primarily my feet and knees. My mobility is so greatly reduced. Pain becomes so severe after such a short time on my feet, and it takes a long time to recover. Sometimes the pain is enough to keep me up at night. There is really no way to alleviate it. Only force me to spend even less time mobile.

The only reason I can be on my feet at all is a magical combination of a particular brand of compressive knee sleeve + my expensive custom insoles + my tolerable brand of sneakers. Of course, with such particular needs, there's bound to be a problem. So, Futuro discontinued my knee sleeve JUST in the size extra small, which is the only one that comes close to providing enough compression to my skeletal chicken legs. I have seriously purchased at least 40 of these knee sleeves over the last decade. I can't use neoprene, so it's been a challenge to find anything that comes even close. I'm still using the ones that I've got, but they are starting to wear out, and I won't be able to replace them.

On top of that, my particular sneakers (Saucony Cohesion 10) have been replaced with newer models that do not support my feet the same way. I have seriously stocked up (and continue to stock up) on these shoes. I have spent hundreds of dollars getting myself a decent supply, so at least this problem can be deferred for another time. I've been wearing only these shoes for every step I take for so many years. They also wear out fairly quickly. I guess they are only really supportive enough when they are new, since I take very few steps in a day. So I replace them pretty often. The newer models (Cohesion 11, 12, and 13) cause a huge increase in foot pain, to the point that I would require an indoor wheelchair (and accessible housing) without them.

So, I have had some troubles, but still relative peace. My body just needs to have a temper tantrum about something. Foot and knee pain are not new for me, but this new progression in severity seems to be the current temper tantrum (outside of the usual, of course).

So all of that feels pretty foreboding. Just knowing my mobility is reduced so much. I've had a wheelchair since I was 19, but I've never used it inside my home. I've always had at least that level of mobility.

I have had the usual challenges accessing my body's very particular food and medicine needs. Trader Joe's has not been reliably stocking my quinoa. And Costco seems to forget every month to order the specific manufacturer that my doctor orders for me for at least one of my prescriptions. Although I am still so grateful to them for being the only pharmacy around willing to special order these brands. They could stop at any time, and I would be completely screwed. I'm so close to being off meds, but I still completely depend on them for sleep. And unfortunately, like every other freaking thing, my body is extremely particular. I have found the one tolerated brand of each med, and I cannot tolerate any changes.

However, I have made some small gains...if you can call it that...with food. I think I am tolerating oat milk (baked) better than almond milk. It's been an ongoing experiment, so I can update more soon. The other food I was able to eat some of without much repercussion was artichoke hearts. I don't enjoy the frozen/microwaved/unseasoned flavor. I've actually never eaten them before. But it is something different I can eat in small amounts some days. I still really want to try the puffed millet cereal as well. Although it doesn't seem I can increase the amount that I eat, only perhaps the variety.

BUT...all of this freedom to do tiny experiments will disappear shortly. Sorry for some repetition here. The rest of this entry is a recent 3 AM diary entry, detailing all of my ongoing worries:

"The melting of the snow spells the beginning of my doom. Each drip brings me closer. The return of invading fumes every day--no safety in or out. Add to that the upcoming "return to normal" for the rest of the world as vaccinations thankfully become available. My world will get much darker and lonelier again. I have been so lucky to have my husband around for this last year. I treasure his presence even when we are off in our own worlds. His companionship day to day now feels like a lifeline. How did I ever manage without it? He is away on a weekend getaway right now, so I am getting the reminder of how desolate that extra level of isolation feels.

But the spring weather brings with it more migraines and also my doom. Nowhere to run. Safety will slip away. No more regaining foods or weight. No more trials--you can't make sense of them when you are under siege constantly. Any sense of security will disappear. The world more treacherous. I cannot bear it again. It tried to kill me before. If I have to go through it again, it better succeed this time.

So, we are starting the seemingly insurmountable challenge of finding a safe apartment. The search brings new possibility but also new risks...new exposures, new tests of tolerance, so many more opportunities for disappointment and feeling even more permanently trapped. I feel these days of relative safety slipping away. I have not put myself in compromising situations for a long time. I haven't been on a car ride in over a year. I simply haven't left the property. I've barely even stepped outside, to be honest.

I have to remember that it not only could always get worse, it always has gotten worse. So whether I stay in this apartment through this summer or I attempt to move to a new place, either situation could lead to further progression. There is no good answer. There is no perfect solution. It feels inevitable that a new tipping point is coming. A new time of crisis that pushes me further down this road of suffering. So I just have to be prepared to accept worse and hope that I can learn to tolerate it, whatever the situation. But I also somehow have to protect myself from getting trapped in a situation without the hope of ever finding a new calm. (Like if I had been forced to live in the apartment with the varnish fumes back in 2014. That day of anaphylaxis was the beginning of my constant trigeminal pain and the escalation of my sensitivities.) I cannot get to a place where I truly have nowhere to go that is even safe some of the time. At least I have that here, and part of me believes that I should just accept that as good enough. I don't want this to be a situation where I took for granted what I used to have and then lost it, as I have done so many times before. I cannot take this home of part-time safety for granted.

How on earth will I accept signing a lease on a new apartment if it has fragrance in it? How am I supposed to know if a place could be made safe with cleaning and the hydroxyl generator and air purifying and maybe some type of low-chem sealers? It will be such a massive investment of money and energy and time, especially for Gustavo. I just can't put him through that and end up with nothing. I am scared. Scared of making the wrong choice. My well-being, my sanity, my shelter, and quite possibly my life could depend on this.

Every mention of moving or the leasing office or even of the spring weather or vaccines brings the feeling of dread with it.

There is also so much dread around the worsening pain in my feet and knees. Standing and walking are becoming exquisitely painful. Never this bad in my life. I don't know how to stay mobile, even just to get around a small apartment. I can't lose my mobility fully. Small apartments are not wheelchair accessible (nor are most houses). And I would lose what little muscle I have left.

It is unnerving how the tiniest change can domino into disaster so easily. My body is so dependent on nothing upsetting the ridiculously delicate balance. A balancing act that I can't maintain. I can never appease this garbage body. And yet I have to devote all my energy into trying to do just that.

All of this is so foreboding. I have lost my lovely calm that I had so much of the last few months. It's all just building, stealing my peace."


So, we do have an apartment we are planning to look at. The leasing office has not been nearly as accommodating or helpful as I had hoped. We have actually been left in a lurch at the moment about if we will even be visiting, but if we do, the first apartment to visit will be this week. I don't want to talk about it. I don't want to think about it. I certainly don't want to make another phone call about it! My request to visit the apartment before it is painted and cleaned did not go over well. And even if we do manage that, we still haven't convinced them not to paint and clean the very next day. There will be exactly a one-day window in which we would be allowed to visit after an apartment is vacated (if they decide to allow this at all). But I still have no idea how I will know if an apartment is able to be remediated or not. They are not able to tell us what products the former tenants used (plug-ins, spray fresheners, fabric softener, essential oil diffusers). Those are immediate disqualifiers for me. They cannot be washed away. This could be a verrrrrrry long search.

There are benefits to the apartment complex we are considering. They are LEED certified. Specifically, they have no shared ventilation between units, and they have positive pressure filtration. Those are both very good for indoor air quality. But they can't overcome the stickiness of pro-fragrances (https://pubs.rsc.org/en/content/articlelanding/2014/ra/c4ra07728h#!divAbstract). Think Downy Unstoppables. And everything Glade. Febreze. Gain. These chemicals have been made to be extended release and remain for many months, usually years. They cannot simply be washed away or aired out. I know I've had to get rid of every piece of cloth I owned before going fragrance free. The fragrance simply doesn't wash out. And that is just fragrances! I have trouble with all new appliances and new furniture. Any repair done to the apartment introduces a new chemical onslaught. There are almost always safer product alternatives, but they are never used. There is so much you have zero control over in an apartment, including the previous tenants and the neighbors. They have the right to live their life and use all of these legal air quality hazards. They certainly have a right to cook in their own home. There is no way of knowing in a brief visit how much of a problem any of it will be.

Anywhere that is not this apartment on a good day is foreign air to my body. It will probably react to anything. I will certainly react to the car ride. I don't want to stir up my world when I like it how it is right now. Not being attacked from all sides constantly.

I just can't prepare. Only deal with it as it comes. And try to save the doom for another day. And actually go to sleep before sunrise tonight.

Thank you for reading this anxiety-driven blather. It's a lot. I just want things to stay the same, miserable as they often are. I am aware that this is as good as it gets for me at this stage in my life. I just want my husband's company and temperature control and no chemical onslaughts bringing misery. I want the chance to accomplish something beyond mere survival in a day. I just don't want anything to change. The way things are right now is what is keeping me safe. The doom is often at the back of my mind. It has come out a few times. I am hoping that by writing it down, I can think about it less and just enjoy the safer time while I have it. And I have been and will continue to enjoy every moment of less suffering.

Saturday, January 9, 2021

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:


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:

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.

Tuesday, April 21, 2020

Chronic Quarantine

It took over a week for me to get this blog post all written. The brain fog has been terrible, and I've had a pain crisis. Migraines have dominated my existence. Pain so severe, it activates my mast cells, causing fever, nausea, vertigo, widespread burning pain, GI trouble, sleep problems, and bladder pain/dysfunction. Plus, the cognitive impairment is often severe. I still managed to fake my way through a couple of video calls in the early part of the week, but there were times I absolutely would not have been able to. All I could do was cover my eyes and moan and wish for a quick death. But I can fake my way through a hell of a lot. It is beyond frustrating that as soon as there might be a lull in symptoms for even a day, the barometric pressure/weather sets me off. I get triggered by both rising and falling pressure, very high and very low pressure, precipitation, foggy conditions, windy conditions, sudden changes in temperature, etc.

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


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

So, it's been two months since I last posted. I spent all of March dealing with another infection: my right tonsil and right ear were affected. I also ran a fever most of the month.

Obviously, the whole world has turned upside down since my last post due to the COVID pandemic. And the whole world has entered a quarantine similar to what I have been living for years. The whole world is learning to adjust to a similar type of isolation that is my whole existence.

So, my quarantine is similar but quite a bit different than what others have been recently immersed in. The similarities...I am staying home, avoiding unseen airborne particles that could make me very ill, don't change clothes or shower much, lose track of days, lack motivation and meaning, feel uncertainty about the future, and often feel very lonely due to the isolation. What do I call this? How about, "Tuesday"? Or every day. Yes. This is every day of my life.

But the differences have become so obvious to me at times while hearing people talk about their experiences. Similar to others, I have to be on alert for threats completely out of my control that can strike at any time every day of my life. So yes. I relate very well to those concerns that everyone is now dealing with, in addition to the actual threat of the virus. But with the endless onslaught of new triggers, it's like there are new viruses popping up constantly in my world. New threats around every corner. Also, obviously, my quarantine has been going on for years with no reason to think it will do anything but keep getting worse.  I have to be afraid that my only remaining safe environment could become unsafe at any time (and is already contributing to my poor health). I do not get short excursions to the store or a walk outside like others. The outdoor air is rarely if ever safe for me, and my feet and knees become unbearably painful after about 300 steps. But for the time being, the biggest difference is that I am chronically ill with varying levels of chronic pain every single day of my life with no relief in sight. I don't just stay home. I stay home and suffer through my days. Boredom is really not a major concern in my life because so much is about survival and enduring suffering. So I know this is quite different than others. Routine is how I stay safe, so the monotony feels protective, not oppressive. Another way it is quite different for me is that there is no hope of treatment. If were to get infected, I would not be able to receive medical care or any kind of treatment. It is just not accessible to me. This article explains the extra concerns for chemically sensitive patients during this pandemic: http://annmccampbell.com/covid-19-and-chemical-sensitivities/

The strangest part for me for sure has been that while others are struggling with this new isolation, I have been overwhelmed by the amount of interaction and home activity. I am used to my days being largely mellow and quiet and dim and calm and alone. So this has certainly been an adjustment. Like all couples who are both at home full time now, we are having to find ways to accommodate each other into our daytime lifestyles. But I also have not experienced this level of connection with the outside world in years. I wonder if people will still have any interest in video calls once they are able to see each other in person again. I suspect not. I also wonder if doctors will still allow telemedicine when they aren't required to. I again suspect not.

The hardest part to cope with is the hope that others are allowed that is not meant for me. This type of message is unbearably sad to read:


I understand that it provides so much encouragement for those who are feeling desperate and trapped. But it just lays out all of the things I am unable to look forward to in life. The ability to look forward to my future at all.

All of this talk of treatment requiring a ventilator has prompted me to make sure that my paperwork is in order on this issue. Considering how poor my health already is and how poorly my body reacts to literally any medical intervention, I have outlined my wishes very clearly in a POLST document  (Practitioner Orders for Life-Sustaining Treatment) as well as appointed a medical Power of Attorney to try to ensure my wishes are respected. This includes my desire not to receive CPR or ever be put on a ventilator, which includes a DNR order. This is incredibly important to me. I do not have any medical doctors really anymore, so I have no one to sign my POLST form. I can only hope it is adhered to or that my husband will be able to have my wishes respected if the time comes. I had a medical POA and a DNR after my last surgery, but I was given every indication that it would not be respected when a crisis actually came. I still remember feeling the need to cry out, "No tubes," because I was being threatened with intubation. This is why we really need strong advocates. I still need to have my power of attorney documents signed by a non-related witness though. So that is not really in place either.

So, my daily routine has gone mostly unchanged with the exception of my husband being at home. My diet is unchanged besides attempting increased portions, and my meal times remain the same. I have stuck with my same home exercise routine to try to maintain some strength. I have been really good at following it for the last 6 months, whenever the pain level is below an 8 and I don't have a fever. Unfortunately, my weight loss has been very limiting. At this body weight, my energy is lower than ever, and I am incredibly weak. I weigh a full 35 lbs. less than I did at my heaviest, and I was always slender. This kind of drastic weight loss is very difficult to cope with. Not just the hunger but the psychological toll. It is hard to feel yourself get weaker due to muscle wasting. It is strange to see new bones begin to protrude. My sacrum is so exposed now. My ribs and pelvic bones are very visible. And sadly, my round, smiley cheeks are gone. Instead, my face looks long and gaunt. It's weird to shower and wrap your arms so far around yourself because there isn't much of you anymore. It's strange for your wedding ring (which was fitted when you weighed 100 lbs.) to become loose. It is painful to no longer have the padding of flesh. And it feels like no matter what I do, I can never gain back what's been lost. Watching the scale decrease despite my best efforts is so hopeless. And my usual exercise routine becoming harder and harder despite my dedication is such a letdown. Like no matter what I do, I'm up against something too big to overcome.

As the pounds have slowly but steadily slipped away, so did my life force. The intensified chronic fatigue makes life even harder than it already was to get through. My ability to accomplish anything or interact much at all beyond my tasks of daily living is so low. And just getting through my daily routine often feels like an insurmountable challenge. My blood pressure being 70-80/40-50 definitely doesn't help with this problem. My blood pressure very rarely reaches 90/60, and my heart rate no longer helps out! My heart rate is usually in the 50s, so it's doing nothing to compensate for my hypotension. With such low vitals, I black out and have near-fainting spells very frequently, and there is just no energy to spare. Not enough oxygenated blood reaches my brain. Even wearing compression hose barely helps at all, because compression is difficult to achieve when your legs are skeletal. Also, I often no longer get my evening or late night burst of energy that I used to be able to rely on. This has worsened my quality of life quite a bit.


I did have a phone consult with my dysautonomia specialist, but even one of the very top doctors was not able to come up with a recommendation that he thought I would tolerate. That was a difficult email to read.

Digestion has been a major issue for me. My 5 safe foods are not the 5 foods that are easiest for me to digest. They are the only ones that my whole system can tolerate. I can no longer follow a low fiber diet appropriate for low motility. I have to eat what my system will accept. Digestion is actually an incredibly draining process that is often quite painful as well. I have also been maximizing my portion sizes as much as possible, leaving me incredibly bloated a lot of the time. Unfortunately, despite painfully adding about 150 calories to my diet, I have not regained any weight. Also, the food cravings can be incredibly intense when your body is crying out for more. There was a mention of French toast on a TV show tonight. They didn't even show it, or if they did, I looked away. But I haven't been able to stop thinking about French toast. This can happen with almost any food ever. Food commercials and advertisements for recipes and meal posts just seem cruel.


One thing I have a lot of difficulty explaining is the nature and degree of my cognitive impairment. It is variable and a little hard to describe. (It's pretty hilarious that I needed my husband to help me write this section. I have trouble putting it into words...which never used to be my problem!) I know my own lived experience, but it's hard to make sense of your own cognitive impairment for some reason! He explained it as low mental acuity with an undercurrent of energy due to ongoing low level reactions. In other words, my brain is usually a little agitated while also having a difficult time focusing. This helps to explain my default state during the daytime: I play simple games on my iPad, just to keep my brain from totally zoning out, while also watching shows on my laptop. I actually don't have the attention to be able to focus on just one thing most of the time. This is my comfort state. This is how I spend so much of my time. My brain has developed severe inattention, so it takes a lot of effort to just pay attention to a TV show. It actually takes much less effort if I am also playing a game. Although, I certainly miss out on plenty of the shows. ADHD medicine has been very helpful to me in the past but is no longer tolerated, like just about everything else.

Another good example of my level of cognitive ability is what my husband affectionately refers to as "trout face." While I am watching my shows and playing my games, my face is often completely blank, staring, with my jaw hanging loose. This is the trout face. I look minimally conscious (like a vegetative state), to be honest. And it is really my default expression. It requires energy to have a more normal expression on my face. I don't have that energy to spare most of the time. It can feel like my face is a mask, and I am unable to move it. I also think my mouth is open to help intake more air per breath with less effort, since my narrow sinuses are often inflamed. This happens on a daily basis. When pain is overwhelming my consciousness, I also revert to the trout state.

One facet of this is the effect of barometric pressure, temperature changes, and precipitation on my mental state. There is a huge correlation. I'm sure that sounds crazy to some people, but the strong association with migraines makes me believe it. Especially with my CSF pressure issues. Low pressure and oncoming storms lower my level of consciousness. Rising pressure or high pressure may also be painful, but I'm more likely to feel agitated and have trouble sleeping.

This whole cognitive problem really came about back in the dreadful year of 2013, almost immediately post surgery, when my mast cells got kicked into high gear. Suddenly, I was unable to follow an episode of Friends. I felt so confused. It is also when I had prolonged episodes of reduced consciousness and even loss of consciousness. Basically, it feels like they broke my brain. And then, it has gotten significantly worse over the last 6 months without my antihistamines. Antihistamines might make you feel drowsy, but if you are existing in an intense histamine fog, a Benadryl can help you come out of that fog and perk up quite a bit. I'm not me anymore, and that becomes more apparent with time. I am starting to understand all that I have lost of me. The cognitive issues seem to be actively progressive, affecting every part of my life and who I am.

My inability to follow TV shows also demonstrates my reduced cognitive capacity. So, I can no longer follow fast dialogue or very complex plots. Two shows that we started but were unable to continue were The West Wing and Damages. Interesting, high quality television. But I needed to pause and have my husband explain the previous scene between each scene! It was an exercise in futility. I have not often felt so stupid in my life. And I'm not saying I missed the intricate details. I mean that I literally absorbed and retained nothing from each scene. Another pretty huge example is Game of Thrones. Now, I did have some difficulty following the plot throughout, but usually reading episode recaps was enough to help me follow along, although my husband had to remind me of story lines plenty of times, much to his frustration, I'm sure. Memory is a major issue as well. I often retain very little between episodes and even between scenes. With Game of Thrones, I was only getting the broad strokes of characters and plot. Details were completely lost on me. Foreshadowing: gone. Anything beyond the main dialogue and major plot lines was completely lost on me. This seems to be why I did not share the common disappointment (devastation?) over the last season. I wasn't able to be let down, because I was never able to keep track of everything anyway. The main problem is my inability to focus and my slow processing speed. There are also processing issues (visual and auditory). I have no visual memory. So, slow but interesting dialogue without a lot of background distraction works best. I miss out on a lot due to my inability to focus, both on TV and in life. I can't even follow what someone is saying to me if there is background noise or activity.

Another area in which my cognitive impairment shows up in odd ways is in my social interactions. I often get asked how I am able to have seemingly normal social interactions if I am so impaired. If I'm not called upon, I remain in "trout face". However, when I am called upon, for example, for a text conversation or even a phone or video chat, my brain is sometimes able to muster the energy and the focus to attend to that interaction. However, this is variable and unpredictable, so I often don't answer. Plenty of times, I start an interaction and gradually fade away. Often, depending on who I'm talking to, conversations end up one-sided since I am too slow to contribute or ask questions. But other times, I seem to be able to have a normal conversation, although how much I have actually absorbed and retained varies. After I have engaged in an interaction (or any activity, really), I often retreat back to trout face and sometimes will even crash into a stuporous state. Sadly, this makes it even more difficult to socialize and explain my inconsistent ability to engage.

The last part of this is sensory overload. My brain gets overwhelmed very easily. Brightness often triggers ocular migraines. (And not what most people would consider bright...minimal or very brief brightness). But recently, I have learned that during the day, having too much light can also trigger an intense sense of uneasiness, an inability to relax, which can set off my other symptoms of mast cell activation.



Okay. That was a lot. I know that was a lot. It took forever to put thoughts into words and type them somewhat coherently! But I'm not done yet, because I have had so much on my mind that I need to get out! And I barely ever manage to do it. I wanted to write a bit about what's going on recently. The last few weeks, I have had two prolonged reactions overlapping (or more, depending on what you count). As soon as my infection and fever were gone, I decided it was time to trial my next potential medication filler for compounding in the future, which is my only real hope for future treatment. So, since I have already failed Avicel (microcrystalline cellulose-wood pulp) and rice flour, I decided to try tapioca starch. It is such a freaking inert substance tolerated by just about anyone. And how much did I try? About 1/16 of a teaspoon inside a safe capsule that I know I tolerate. That was three weeks ago. It caused my burning insides to return. I had had a nice respite from that symptom, but it is back full force now. It also made my eyes burn, my mouth burn, and my crotch burn. Additionally, I got a very full feeling in my throat. Throat symptoms are always something to be wary of. Now, I had overlapping reactions, so I can't say for sure, but these symptoms are persisting. I'm also becoming much more reactive to showers and flushing at random times, which is difficult. This is my face after a shower. Flushed with a rash. Being so pale, my flushing isn't as obvious as some. But if you know my porcelain-skinned complexion, you can recognize the delineation between my white skin next to my ear and the pink flushing on my cheek. I used to always have the same skin tone all over with no variation.


Here's another one that shows the flushing.


The next reaction was just three days later. It was a result of intimate activity. These two issues combined caused total misery. By the next morning, I had gained 5 lbs. of swelling, mostly around my pelvis. (Weight gain seems great, but this kind is fleeting.) Burning pain all around. Uterine cramping. Bladder retention and burning. And very sadly, my severe intestinal bloating after every meal has returned and persisted. I also ended up with another yeast infection and a fever of 99.7. (My normal is 97.6.) The fever lasted for several days, during which time my total body pain was about an 8. I mean head to toe pain. My mantra to myself has been "Give It Time." It feels like it's been forever, but it's only been 3 weeks. I just finished treating the yeast infection, so the worst remaining symptom is the severe bloating (often about 5 inches added to my tiny frame). I seriously just inflate like a beach ball in my gut. I just have to hope that this does not become permanent. But of course, symptoms easing up requires trigger avoidance, which is freaking impossible so much of the time!

I have a lot of concerns with summer approaching. Already, we have had some warmer days. And on warmer days, every smell is stronger. Scents permeate so much easier in the heat. Scents mostly get inside through our bathroom from the neighbor's apartment. I know every time she cooks and every time she uses scented products in her bathroom. And I don't just smell it in the bathroom. I smell it in the living room too. Scents also come in through the hallway door, although that has been sealed up with tape for quite a while. It's not much of a problem in the colder months though. Another big issue with summer is mold growth. Our bathroom lacks ventilation and is a bit leaky, so it grows plenty of mold. Mold seems to be a bigger and bigger issue for me each year. I have had to replace our bedding and get rid of old clothes and towels. This will be the year I finally get a dehumidifier. We have no room for it in the bathroom, but that's where it needs to go, so we'll make it work. We need it in the summer, because our wall air conditioner removes almost no humidity from the air, so we often reach very high humidity levels. I also have concerns about summer heat. When the heat and humidity are high, our air conditioner is not sufficient to cool the apartment, especially the bedroom. And heat is a vasodilator, so it lowers blood pressure and causes prolonged loss of consciousness. It also activates mast cells, so it gets you both ways.

Another summer concern is the outdoor air. I have the air conditioning unit really well sealed up right now so that I am mostly protected from the outdoor air contaminants. (Skunk smell still gets in somehow...or it could be marijuana smoke. I can't tell the difference!) But in the summer, that obviously needs to be unsealed, which allows tons of outdoor air inside, along with the air conditioner itself, which blows largely unfiltered air into the home. So every time a neighbor grills, the smoke gets inside. Every time a neighbor does laundry, the fumes come inside. Those are daily concerns all summer/early fall. Asphalt is another huge trigger that gets into the air and into my home in summer. There is no where safe. I am also truly terrified to find out if my mom's house will be safe again for me this year. Of course, I need to be in a state where I am not currently having a reaction. And then I have to be brave enough to test it out. I need to be smart about the timing. There is an idea called the activation threshold. Basically, similar to migraines, reaction begets reaction. If you are already reacting to something, you are at high risk of developing new reactions. This is why I have to spread everything out so ridiculously much. I know not to try something new unless my system is in a calm (for me) state. Many people with chemical sensitivities end up without a safe home, which is a scary prospect. So it's important I don't push myself. Anything can trigger an escalation. One big trigger or multiple compounded triggers.

Summer is also a scary time to have no antihistamines. As soon as we had our first thaw, I began suffering my first seasonal allergies without high doses of antihistamines around the clock. The sinus drainage has been terrible, the itchy eyes, and my ear is blocked a ton of the time. Nasal rinses seem to make it worse. And I still cannot tolerate any allergy eye drops or nose sprays. The fear of a mosquito bite with no round-the-clock Benadryl is also huge. I have massive, systemic reactions to bites. And the only way I have survived in the past is 2-3 Zyrtec a day plus a Benadryl every 3-4 hours and ice to numb the site of the bite for at least a week. I have no idea how I will survive my next bite if I don't have Benadryl by then.

My histamine symptoms are troublesome during the day, but they really flare overnight, when histamine levels peak. This is a rough photo of me on an average night. I sleep in two parts, so I always wake up during the night. At that point, I use the bathroom and apply more dry eye lubricating drops, because by then, my eyelids are swelling badly. They swell so much that the tear ducts get swollen shut, causing the corneal abrasions. But itching and sinus drainage and crawling skin sensations and heart pounding are also common overnight. In this photo, my lips are also swelling, as they often do at night. I rarely share photos of myself anymore, because my appearance is so embarrassing to me.



But of course, I have no allergist and no way to compound meds. I'm also not particularly willing to trial anything else. I go through way too much from each trial. And every time I tell myself, "Stop Trying New Things!!!" So, I have no idea what I'm doing. I guess I'm waiting for my current round of misery to end to hope I can get brave enough to approach whatever's next. I lack motivation to act now though, because I don't intend to try anything new. Just trying to maintain this marvelous status quo. But I need to find out if any local compounding pharmacies will compound the active ingredient in a capsule I give them with no filler. If not, I need to keep trying the fillers I haven't tried yet: sucrose, oat flour, quinoa flour, potato starch. But that will obviously be months of trials. And I don't want to wait that long or go through the extra suffering.

Then, I would have to see if my previous, less-experienced immunologist will see me again and try to help me. Ideally, she would be able to offer a phone appointment. I need to find some way back on antihistamines. They affect so much more than allergy symptoms. I also need to consider compounded Celebrex to reduce prostaglandins. I could attempt compounding Cromolyn Sodium, but I don't have much hope in that med for myself. The only other ideas on my list of "treatment options left for me" are Xolair injections (higher risk) and maybe Gamma Core vagus nerve stimulation. Dr. Barboi still wants me to try the chemo drug, Gleevec, which seems highly doubtful. That's about the end of the line for me.

I actually have more to write about in my blog notes, but I doubt anyone would keep reading beyond this point, if anyone even reached this point. So I will save it for next time. Thank you for reading and checking in on me. I love that people still care about my endless saga. This disease is progressive and relentless. Not for every patient. But for me, Mast Cell Activation Syndrome eats away at me, causing ever-increasing suffering and limitations. I don't even know how to hope for anything different anymore. Hope is a dangerous thing and brings so much pain. More on this in the next (super uplifting!) post.

Thanks again for reading what feels like a very incoherent post! I swear, I proofread many times, but I still don't know if it makes sense.

Thursday, February 13, 2020

Fragrance-Induced Suicidality

Yes, that title is a bit shocking. But so is the experience of it, and I haven't read many people write about it (although I know others experience it).

So, I bit the bullet and saw the gynecologist. And I have survived to regret it. I will never again care about a yeast infection or anything else that might possibly go away on its own (which I have been learning is just about anything). NOTHING, and I mean nothing, is worth going through what I went through this last week.

His office was so scented that when my mom brought the clipboard to the car for me to fill out the forms, the clipboard and the pen both reeked, and they could not be in the car with me. We also had to leave our coats and purses in the car to prevent that scent from invading everything.

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

(By the way, I wore my respirator the whole time.) Here is how the reaction progressed:
Day 1: During the appointment, I could feel excess mucus accumulating inside my sinuses and dripping down my throat. The trigeminal pain started as well. My eyes were burning like crazy. Upon leaving the office, I was in a hypomanic state. My skin was crawling. After a few hours of aggressive showering and a nasal rinse, I crashed into extreme exhuastion with abdominal bloating/pain and a migraine began at my left temple. If this had been the extent of it, I would see it as a tolerable reaction. (How sad is that?) But it really hadn't even begun yet.

Day 2: Burning eyes, altered taste, sinus pressure, burning chest after ingesting anything, exhaustion and stupor, too bloated to eat much, itchy ears and abdomen and raw mouth after eating, waves of goosebumps, vertigo, nausea, joint/muscle pain, complete lack of energy/motivation, worsening chest burning, bladder pain, in and out of consciousness, intense head pressure worsening as the day went on. And significantly, I was experiencing obsessive suicidality. I couldn't do anything about it, not even cry or talk about it. I was barely able to move outside of bathroom trips. But the degree of obsession with needing to die was intense.

Day 3: Blue lips, global head pain level 8-10 (feels like my brain will explode), nausea, vertigo, burning lips, teeth pain, bladder pain, chills, goosebumps, in and out of consciousness, most painful day so far, severe depression, no energy.

Day 4: Burning eyes/mouth/face, pressure in head and face/teeth increasing as the day progresses, more energy with deep depression, all symptoms worsening throughout the day, burning core, burning vulva, pounding heart, shortness of breath, lips burning, vertigo, blacking out all day but stayed conscious, orthostatic tachycardia/hypotension severe, intense suicidality with increased alertness.

Day 5: Depression/suicidality wore off as the day progressed along with the severe pressure in my brain. Orthostatic tachycardia/hypotension continued. A new weather-related migraine began, but I was back to myself mentally.

So, today would be day 8. I am not back to my supposed "baseline," but I am able to reflect back on what happened and its severity and its implications. I still feel pressure in my head, and I have a weather migraine wearing off, but nothing like the off-the-charts level pain I had.




I'm sharing based on the idea that you must give voice to the darkness if you ever hope to find the light. Also, I know that sharing my struggles can help others feel less alone. And I have never been one to hide the darker sides of chronic illness/pain.

I wrote this diary entry on day 2, before the stupor got so bad that I couldn't communicate. Of course, I wrote this at bedtime, when my mind is the most alert:


"Pain is horrible. Exploding head. Burning is horrible. Eating is intolerable. Obsessed with wanting to die, just like the night before the appointment and the day before the appointment and the night after the appointment.

I was suicidal because I knew how much the appointment would make me suffer, and now I am even more suicidal because I was so painfully right. Excruciating pain. Can barely tolerate food. Can't sleep. Passing out. I am at high risk of losing safe food/meds when I flare this badly. I cannot face another appointment. I cannot go through this suffering another time and keep wanting to live. I cannot face a life where leaving home or having exposures at home makes me suffer so badly. I am obsessed with needing to die before it is necessary to leave home again or I get exposed again. I do not belong on this Earth. It is not tolerable for me. The endlessly repeating agony has destroyed any desire to go on. I refuse. I refuse to go through this ever again.

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

And I am sure a lot of what I am feeling is from neuroinflammation from the reaction. The brain swells. It can cause severe depression along with the fog and the vertigo and the passing out and the feeling that my head will explode. It will go down, but I will inevitably run into more triggers and have to leave home many more times and get exposed at home many more times and go through this over and over again, on top of the immense pain, and I cannot face that life. I refuse. As soon as I think I can manage to keep going forward, I get crushed again. And I always will. There is no way out.

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

I never should have gone out. I should have waited and then tried to get another extension. I should never leave home again. I can think about nothing but the necessity of death. I am obsessed. Nothing is worth this level of suffering.

I know it won't stay this bad forever. But I'm not dumb enough to think it won't get this bad and worse over and over again for the rest of my life.

Life has become about avoiding, enduring, and distracting from pain and suffering. There is no pleasure. There is nothing to look forward to. There is no joy. There is no hope.

I don't care about anything. Nothing matters anymore besides death. I have no interest in the future or trying to fix or prevent anything. Only suicide, because I truly understand now that it is the only way out.

All of my hard earned gains have been lost. My quality sleep. My decreased head pain from magnesium. My digestive regularity. My food tolerance. My energy level and how to best use it. Feeling like I had a purpose and working toward it because I cared. Sticking to an exercise routine where I was seeing improvement, and caring about it. It is all wiped away. I care about nothing besides avoiding ever feeling like this again. Death is the only way to make it stop. I refuse to be strong and brave and resilient. I have endured too much. I have been pushed over the edge. I am too beaten down. I am empty. I am nothing. I deserve an end to this miserable life full of agony. I cannot keep pushing myself. I am weak. I am done. No more problem solving. No more fighting. No more pushing. No more enduring and surviving. Just let me die. Somehow, let me die."



So, that is the place I lived for the endless minutes and hours and days after exposure. Unfortunately, the one person I opened up to at this point was my mom, so she had to endure knowing about my obsessive thoughts. We both agree that I was not myself at all. That wasn't me talking. I was cold and resolute and determined and certain. Not my normal state when dealing with suicidal ideation.


Now, I have a pretty good understanding of how this came about, and I will share it with you.  Because if I have learned anything from medical mistreatment and gaslighting for over two decades, it's that you must have a good understanding before sharing. And be careful who you share with. I do not intend to tell a mental health professional or any other medical professional about this episode. That is how you get labeled a psych case. That is how you stop being treated as a "medical" patient, and doctors stop believing your self-reported symptoms. If they knew about this episode, they would lose all ability to see me as a rational human being with any level of intelligence or awareness of my situation. I have been through it countless times. These types of episodes have contributed to my medical trauma and distrust of physicians.

So, here's the explanation, with scientific articles to back it up. Unfortunately, I cannot share a single article that sums up exactly how and why this experience came about, but if you put the pieces together, you can see how easily it happened.

First, you have to understand that mast cell activation and all of the chemical mediators they release when triggered to degranulate cause inflammation. This includes neuroinflammation. https://www.sciencedirect.com/science/article/abs/pii/S0149763417300295

"Mast cells reside in the brain and are an important source of inflammatory molecules. Mast cell interactions with glial cells and neurons result in the release of mediators such as cytokines, proteases and reactive oxygen species. During neuroinflammation, excessive levels of these mediators can influence neurogenesis, neurodegeneration and blood-brain barrier (BBB) permeability. Mast cells are considered first responders and are able to initiate and magnify immune responses in the brain."


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

"High rates of comorbidity between depression and specific medical disorders, such as, stroke, chronic pain conditions, diabetes mellitus, and human immunodeficiency virus (HIV) infection, have been extensively reported. In this review, we discuss how these medical disorders may predispose an individual to develop depression by examining the impact of these disorders on some hallmarks of neuroinflammation known to be impaired in depressed patients: altered permeability of the blood brain barrier, immune cells infiltration, activated microglia, increased cytokines production, and the role of inflammasomes. In all four pathologies, blood brain barrier integrity was altered, allowing the infiltration of peripheral factors, known to activate resident microglia."


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

https://www.sciencedaily.com/releases/2017/09/170921104245.htm

"In the study, Dr. Peter Talbot and colleagues found that the increase in the inflammatory marker was present specifically in patients with MDD who were experiencing suicidal thoughts, pinning the role of inflammation to suicidality rather than a diagnosis of MDD itself."


So, I think given this information, it is not a huge leap to make that a massive mast cell degranulation event leading to inflammatory mediators flooding the brain and seeping through the blood brain barrier could lead to overwhelming, all-consuming suicidality.


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

The people I feel I owe an explanation to the most are the people I am closest to in life. But they are also the ones that don't require an explanation. They simply believe me and accept me. And for that, I am truly grateful.

I am still clearly coping with the after effects, mainly persistent head pain/pressure, photophobia, widespread burning, bladder pain, orthostatic symptoms (POTS), and lethargy/stuporous states. Emotionally, it is more coping with the aftermath. I am back to myself. I'm not saying that's great, but it's a heck of a lot better than the hell I was living in. You could tell the suicidality had subsided when I cleaned both the toilet and the bathtub. Those are certainly not tasks you would undertake if you had no intention of living.

But the reality is, now I know that this type of reaction is possible, and that makes exposures even more dangerous. I have no intention of purposefully exposing myself to anything in the foreseeable future.

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

Beyond that, my mast cell specialist has actually taken medical leave followed by early retirement. I no longer have a doctor on my side. Which probably doesn't matter much since I cannot tolerate more medicine trials, and I certainly can't risk any of the "serious" treatments like biologics or chemo. I can't even take a freaking compounded Benadryl or step foot in a hospital, for god's sake.

So, I am so very much on my own. But the reality is, no doctor has been able to figure me out or help me in so many years. I am the only one who can help me. In the last month, I solved both my daily laxative and my discontinued cereal dilemmas on my own. There is not a doctor that could have solved these problems for me.

For a daily laxative, I finally figured out that I could essentially compound my own magnesium oxide powder into the clear hypromellose capsules. I figured out the dose I need, and problem solved. It took time and painful experimentation, but honestly, no doctor would have recommended that to me.

When my cereal was discontinued, I also had to experiment and figure it out for myself. I developed a recipe for oat flour biscuits that I can actually tolerate! The bad news is that my weight has dropped off and is consistently around 92 lbs. I am officially 20 lbs. under the minimum weight for my height. It's not great. I am starving. But I am also constantly eating what I can and doing my best.

In case anyone else is struggling and may be helped, here is my recipe, that I am certain could be adapted for other flours/oils/milks:

Oat Flour Biscuits

Makes 45 biscuits

Preheat oven to 350°.

Whisk these together:
2 cups almond milk (Edited: I use Elmhurst oat milk now)
2/3 cup olive oil (Edited: I use grapeseed oil now)

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

Mix well. Drop by spoonfuls onto baking sheet. Bake for 12 minutes. Remove to rack to cool completely.

It is a bit hard to get down, as I find them to be quite dense. It takes small bites and a slow pace for me and my gastroparesis. Also plenty of almond milk to rinse it down. But they have become my absolute favorite food! Never in my life did this former sugarholic think I could ever enjoy a baked good without sweetener. But they are delicious! They look a bit like a cookie but taste kind of like an English muffin.

Anyway, this has only further solidified for me the fact that doctors cannot help me. Only I can solve the puzzle that is me. And I am sure my recent experience has added to my medical-related trauma. That is only natural given the severity of my prolonged reaction.

But I will say that, like last time, I don't know how many more body-on-fire, heart pounding, insomniac, face exploding, and now suicidal reactions I can handle. This situation is not tenable. And yet, there is no alternative. There really is no way out. I don't even have a freaking doctor anymore. Hope is hard to find. For now, it is just embracing safety at home. That is all there is.

I know a lot of people don't really believe on sharing the negative parts of their experiences, chronic illness or not. (Especially those DNRS patients who aren't allowed to even think about their illness or their symptoms, much less express them.) So, they shouldn't read my blog, because I keep it real here. I always will. I don't live in denial. I accept all sides of my reality. In addition, I have a deep appreciation for genuine relationships that are not based on some fake, positivity-only version of your life. I appreciate every person that goes through the ups and downs with me, even when they are mostly downs. And I am so grateful for my husband for helping me through the crisis over the weekend and weathering every storm with me. I can only hope that this does not become a regular reaction for me, and it was just associated with a specific chemical that I will NEVER encounter again. I certainly will not be in environments that scented very often in my life. I do not have hopes for magical/impossible cures and healing in my life. All I can do is get through each challenge and obstacle and torture as it comes.

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

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

Image result for i've built more relationships with people by being open about my struggles than I ever could have pretending like i had it all together

Wednesday, January 8, 2020

The never-ending flare

MCAS is a difficult disease to explain. I always feel on the spot when I am asked to explain. So I put together this blurb, attempting to summarize a complicated condition:

I have an immune system dysfunction. My main immune system cells (mast cells) get set off abnormally by seemingly benign triggers, including most food, most environments, most medicines (and inactive ingredients), and even things like vibration, exertion, and weather. It is impossible to avoid all my triggers. The activated mast cells cause great amounts of inflammation all throughout my body and even damage connective tissue, which causes a huge variety of symptoms--primarily pain, fatigue, neurological, GI, allergic, and cardiovascular. There is a risk of anaphylaxis to just about anything. Reactions can be severe and prolonged. Due to this, I am essentially always suffering from overlapping reactions. It's a very complicated and uncommon condition that is not easily treatable and very difficult to control. My case seems to be particularly difficult due to widespread food, medicine, and environmental intolerance. Some people's hyperactive mast cells are more discriminating, but mine seem to degranulate from just about anything, including the medicine that is meant to treat it (and that helps many other sufferers).

That's about the best explanation I could come up with. It doesn't come close to describing the struggle, but it's a start.

I've been thinking about the sacrifices my illness demands of me over time. How I have been chronically ill for so long, but it really is a different level now.

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

Most of those seem trivial now. The types of sacrifices I have to make now:
the ability to cook/be around most food
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.