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.

Progressive

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I also found this article about food hypersensitivity by inhalation:

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

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

But what I am eating daily is:

oat biscuits

quinoa

broccoli

carrots

potato

Okay.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So what's next?

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

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

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

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