Sinking Ship

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

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

Practical issues:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

-Grieving Grandma. I will never stop missing her.

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

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

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

-Loss of mobility and cognition

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

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

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

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

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

Summer 2022: The heat, The doctor's office, The Asphalt, The Pain

For the last 14 months, I've been diligently avoiding thinking about my illness by devoting all my energy to: 1) maintaining my strict daily routine, and 2) studying Spanish, reading about Spanish, listening to Spanish, taking classes in Spanish, literally just thinking about Spanish most of the time. I've had some moments where I got pretty obsessive, but for the most part, it's been a healthy outlet and distraction. This has not impacted my physical health, but it's been good for my mental health, overall. A caveat is that I have mentally and emotionally retreated into a shell in a lot of ways. I don't follow the news. I've had periods where I'm not using social media. And I'm even worse than usual about maintaining my real-life relationships. I also haven't been blogging or even keeping track of anything about my health. The exception is some trial and error of a few different foods. But I didn't take any notes, so my memory doesn't really allow me to report how it all went. What I know is that late winter and early spring has become a positive time of year for my health, so that is when I was able to add a few foods. I put on a few pounds. Got out of the crisis weight zone, barely. I also reached a point of truly being able to appreciate little moments of peace and ease. This really peaked with an outdoor visit with some family members I haven't seen in years. I was masked. I didn't get close. But I knew to truly live in the moment and let myself be happy about it. And I was. I know how few and far between the victories are. And I knew that improvement is fleeting.

And it was. The warmth of summer and necessity of AC brought back all the usual problems. I won't recount them all. The general effect is one of permeating fragrance invading my home and a huge uptick in migraine and all other symptoms. This has led to a return to spending nearly all my time sealed in the bedroom, only being able to air out during the overnight hours, when it's coolest. Some nights don't cool down, so I don't get to air out or cool down the bedroom at all. It gets extremely stuffy, hot, humid, and musty in my little sauna prison. But as sick as the heat and humidity make me, the fragrance that fills the rest of our apartment causes monumentally more suffering. Mind-blowing levels of pain in my face and head. So I am better off sealed up tightly in my bedroom most of the time. Nonetheless, the ability to blast the AC and the fan at night to freshen and cool the air is critical to my survival. (Insert foreboding omen here...)

After recognizing this seasonal pattern, I have dreaded summers. Back in May, right before our first heat wave, I remember apologizing in advance to my mom and my husband for what was about to happen, hoping that somehow I'd used my time with them well enough, added enough positivity to their worlds, to make up for the misery I would be bringing, knowing that the generally pleasant and calm and loving version of me would be leaving. Just hoping that I had done enough to justify my existence in the coming months. And also knowing that I may never get back to that state. Seeing how it's gone so far, I don't believe my existence has been justified, I believe I gave all I had to be a positive force in their lives, but these negatives are just too high.

I had gone quite a while without passing out. But the migraine with brainstem aura returned. John Hopkins describes my general migraine state well, ever since I stopped tolerating treatment in 2016: "However, in some patients, the migraine is particularly severe and long-lasting — and may even become chronic, occurring continuously for weeks, months or even years. If improperly managed or left untreated, intermittent migraines may essentially transform into a chronic daily headache, with continuous and smoldering symptoms that periodically erupt into a "full-blown" migraine. This condition is extremely difficult to treat." I get all flavors of migraines, with an ongoing baseline level of migraine. I get hemiplegic migraines. I get vestibular migraines. I get visual auras. I get brainstem auras. I have various migraines coming and going at all times. The brainstem auras (previously called basilar migraines) cause me to lose consciousness (up to 1-2 hours) or have prolonged presyncope (reduced consciousness--often on the verge of passing out). Followed by days of massive pain, of course. The baseline migraine state has kept me in a permanent, waxing and waning fog. Some level of cognitive impairment is constant, as is a level of pain. There is also a dulling of emotions nearly all the time. I am not who I once was. With the exception of one day, I have been stoic even while writing these words. Blank-faced. Maybe a few tears crossing an empty face. So if these sound like the words of an anxious and desperate person, that's not quite right. I actually feel very blunted emotions. And my inattentive mind doesn't dwell on anything for long.

Along with the worsening due to the heat, of course, I lost some foods and some much-needed pounds. But I'm also not doing great processing any of the food that I take in. I had foods I wanted to trial, but all thoughts of trials or improvement are eliminated for this year.

Anyway, I'm actually writing after all this time because for the last 4 weeks, I've been going through an exceptional spike in symptoms, enough that it encouraged me to take note of my symptoms again. These are the notes written in my phone. I have simply copied and pasted. This is not refined or censored. It felt like I needed to get it all out. To have some record of what I was going through. Maybe to warn my future self away from ever forgetting this level of hell. Maybe just a place to put all the pain I have been in. Again, these are unfiltered thoughts. I'm sure a lot of it sounds self-pitying and repetitive. But honestly, I play nice and smile and put up a brave front and all that shit almost every day of my life. I say, "Bien, bien. ¿Y tú?" I suppress and distract nearly all of the time. But this was not a time to suppress, since I simply was not capable. It had to be expressed. This will be very repetitive because reactions are PROLONGED. I decided the pain decreases about 2% each day after peaking around day 3 or 4 after a level 10. I wrote a little bit every day for three weeks, although I lost track of time.. My brain goes through the same thoughts each and every day to varying degrees. It's nothing new. But just cause I'm used to carrying it doesn't mean that it's not heavy or that I can always carry it alone and with a smile on my face. Basically, I fake it until I can't.

June 28, 2022

I went to a doctor's office to look into my vision, which changed drastically overnight in one eye. I have read that sudden reversal of lifelong myopia should be investigated. And at the very least, having the appropriate vision correction might lesson my continuous migraine flare ups just a little, by reducing eye strain. I also have the chronic dry eye, frequent corneal abrasions, a permanent stye, and swelling eyelids. 

Who the hell did I think I was? Why the hell did I think I was entitled to a new pair of glasses? What made me think the world would allow this to happen? Lest I had forgotten that I am worthless, the world was happy to remind me. You are nothing. You deserve nothing. And you will be treated like the piece of shit that the world believes you to be. Learn your lesson. Don't think for one second that this world is for you. You don't belong. You are not welcome. You are trash. Thanks, world, for this reminder.

June 28

3:35

3-5 minute fragrance exposure wearing paint respirator for chemical odors. Had to leave the building before I could even check in for my appointment. Immediate brain and face pain to a perceived 10. Hysterical crying and screaming and death wishes and rage.

4:45 Extreme fatigue with persistent brain and face pain (redefining level 10 pain). Screaming loud tinnitus. Vertigo.

5:00 Urethra starting to burn. Muscles burning and aching throughout legs. All painful areas amplified (especially knees/feet/thighs/shoulders). Extreme muscle tension. Waves of goosebumps. Loss of balance. Loss of appetite. Burning eyes. Burning mouth. Extreme lethargy. Out of breath with a few words. Nausea. Unable to urinate more than a few drops with a full bladder. Painfully swollen urethra. Pleurisy. Costochondritis. Ear canals swelling. Abdominal swelling. Itching, crawling skin. Temperature dysregulation: hot face/cold legs, allodynia: skin hurts.

June 29 Head/face pain 8. Heart pounding after eating. Yawning spell. Extreme fatigue. Pre-syncope and brief syncopal episode. Vulva burning. Mouth burning. Air outside the bedroom triggering pain spike worse than usual. Much more sensitive. Swollen eyelids.

July 1 Head/face pain 6-8 with spikes to 8-9. Ice pick pains in occipital area. Tooth/jaw pain. Tooth sensitivity in specific areas.

.July 3 continued ice pick pain in occipital and jaw/teeth. Mostly unchanged. Burning nerve pain in feet. Bladder pain ongoing but lessened. Eyelids swelling a little less. Overall stuporous state, but able to come out of it at times.

July 4 Histamine symptoms. Burning mouth and feet. Swollen eyes. Stupor. Continued head and face pain and pressure. Lowered tolerance for being near people.

July 7 Severe neck spasms in sleep leading to full body vibration. Neck muscles clenched so tightly while sleeping that the muscles began convulsing. I got up to find the source of the vibration before realizing I could barely hold my head up from the muscle fatigue. Muscles continued to clench as I tried to get back to sleep. Had difficulty holding my head up the whole day from muscle exhaustion. Day 10 of severe pain. Confined to dark bed still.

Hopeless Ruminations

On the way home from the doctor's office, amidst the hysterical cries, I couldn't help but notice the truly shocking difference. Seeing people walking around inside that building with no ill effects. Then watching people just out for a walk on a nice summer day on our way home. Then seeing my family gathering to welcome a new family member to the world over Zoom that evening, a world that I should be a part of, but never will be. Nephews that will never know me. All while I am forced to continue suffering through this tortured and doomed existence with no purpose and no future, unable to experience joy or pleasure, while suffering through the worst agony I can imagine repeatedly for the rest of my days and miss out on anything that could give my life value. There could not be enough to justify this existence. There exists nothing in the world that could be worth this specific type of suffering, in both nature and scope. There will only be more suffering and loss. People are able to get through the grief of life and loss because something new can come into their life. Anything. New people. New activities. Children. Pets. You fill that grief hole with something new. But I will not get new things. I have no way to cope and move on from grief. My world just gets smaller and sadder and lonelier.

I live in a different world. I'm like an alien, my mutations making me incompatible with life on this planet among this foreign species. My experience has so little to do with the human experience of other people. The type of suffering so vastly different than anything most people could possibly ever know or even imagine. (I said different, not worse--not trying to claim a prize here). I would truly settle and be satisfied if I could just go back to being a regular chronically ill person. The kind whose symptoms frequently interfere with plans. The kind who is forced to rest after any exertion. The kind who has access to various types of treatment for pain or symptoms. The kind that can have a dog as a companion or even a helper--to love and be loved. The kind that can take a relaxing trip to literally anywhere to unwind. The kind that can experience some pleasure from a special treat in the form of the ice cream shop or massage therapy. The kind that can occasionally dress up a bit nicer and enjoy a tame and brief night out, even if they suffer for it later. The kind that occasionally can be in the presence of those that still care about them after all these years--to have the comfort of the company of loved ones. The type that is frequently still disbelieved when recounting their own lived experience. The kind that has too many doctors' appointments. The kind that has to just keep trying until they find the right combination of treatments. The kind that has the security of safe housing as well as the ability to leave home. The kind that can just get a new pair of glasses when they've had a sudden change in vision. I don't even relate to the chronic illness community anymore, except in an almost nostalgic way. This experience is vastly different than anything I could have imagined, anything my decades of illness could have prepared me for. I knew how to do that other kind of chronic illness. I envy that experience that used to plague me. Now this is merely an endurance challenge to the death. There is no way to avoid thinking about how you might get out of this torment, since it can't happen soon enough. I can only hope that my suffering will be cut short somehow.

There is the injury of no one giving a shit. That other disabilities must be accommodated, but not even medical care is made accessible for my type of brokenness. Nothing is accessible. Family and friends who seem to care are not accessible. It is basically impossible to believe that your existence has any value when the world actually attacks you, targets you, and the vast, vast majority of people will never lift a finger to change this injustice, to try to undo your erasure from the world. How you wish it were as simple as being erased rather than having to continue living this wretched, invisible existence of agony.

You would think that I would have learned this lesson by now, the lesson that the outside world can only ever hurt me and break me. Each time, I swear that I have finally learned. I really hope that I've actually learned it this time. That there is no safe place for me. That risks are to be avoided at ALL costs. That nothing could matter more than avoiding this agony. That the pain of daily life inside that seems so horrendous cannot approach the magnitude of the punishing pain brought on by the world out there, where people are oblivious to the abuses they are carrying out and the lasting damage they wreak. That I am invisible. That I do not matter one iota. That the amount of pain I am in each day means nothing. That it will always eventually come back to this. This scene of me crying silent tears inside a raging body all alone. Crying out to the empty skies for relief, or release. Please release me, oh great void.

Why can't natural selection do its thing on me already? I suppose it has by preventing reproduction, but I shouldn't really have lived this long if nature had taken its course. Medical intervention is not always desirable. The harm it can bring is so much larger than any relief when you are not the picture of a patient that they recognize. Again, this makes me an alien. I am painfully aware that most interventions I have tried have done more good than harm for most people. But thanks for the reminder that I am an unfortunate one. One that is left alone to suffer through my days.

To have your massive suffering be so unfathomably long and so meaningless just destroys you. I'm not who I once was. That person has been broken down and reshaped into a more and more deformed version of anything resembling me. I'm being attacked all the time. I live in this torture chamber.

This also cannot be ignored as a sign of all of the resources I will not have access to in the future. The future is not actually possible without access to some type of assistance. There are times in life when you have to go inside a building. You have to have some kind of medical care. Your body might need help recovering from an infection or an injury. But this experience proves yet again that I must live not only with uncertainty, but more with the certainty that care and assistance will not be available to me when it is needed most. After all this, I feel like I can get through damn near anything without any kind of intervention, as I have been doing for years, but we know that's not true. Yes, it's surprising that I've made it this long. But I am not fooled. I've witnessed and felt every moment of this descent. I've felt the worsening and the progression every step of the way.

There are also implications for the impossible home search, which I had somehow started thinking was an actual possibility, albeit a far-fetched, needle-in-a-haystack type of situation. All of that is long gone now. All hope having been ripped away again, the tiny sliver of it that there was.

Also, knowing that a pain spike so big leads to extended periods of time of severe pain. It is horrific in the moment, both because of the horrors of that moment's pain but also the ongoing pain that it brings. The inflammatory cascade that I dread so much. The exact one that other patients can simply raise their dose for, or do a short course of steroids to get back on track. Without anything to assist and deescalate the situation, the suffering is so greatly prolonged. And with nothing to dampen the pain and symptoms and inflammation. I simply cannot imagine and refuse to face living life like this.

And that is how I got to the point I did this last year. Spending every lucid moment with a focused distraction. Giving up any hope of productivity or contribution to the world. Merely seeking for ways the world can distract me from my pain moment by moment. Distract me from these thoughts of the future, of the present, even of the past. Save me from myself. But when the pain is this high, distraction is nearly impossible. Because you have to be able to focus and care about something in order to be distracted by it. So now I am stuck here to ruminate.

Pain levels are so meaningless. The number of times I have reached a perceived 10 only to then experience worse is uncountable. I used to just call 10 a 7 based on this knowledge, but I refuse. If it feels like it can't get any worse in the moment, it's a 10. It's just that the body is capable of ever-increasing levels of pain. There is no limit.

Waking up vibrating seems to be my body's new trick introduced by this occurrence. It wakes me up out of deep sleep. It seems to start in my neck but then eventually, I sense that the whole bed is shaking. But it's just me. If I sit up, it stops.

Also, I'm currently typing at 5:15 AM. Finally being able to leave the bedroom and cool down and ventilate the apartment between 2:00 and 5:00 AM has cemented even further my status as a nocturnal, vampiric creature. I see every sunrise before going to sleep.

Then, after all of this, my body is approaching some kind of new, horrible normal. I'm accustomed to the requirements of the day based on temperature. I hate it, but I'm learning what is required of me to avoid the worst suffering, and sometimes I can.

This ends the notes on my phone. The rest are reflections of tonight.

I'm in much worse shape than I was before the failed attempt to get appropriate glasses. But I've been adjusting to the higher pain levels and accepting the routine of finally airing out and cooling down overnight. But lest I get too comfortable, I've received devastating news. The news I've been dreading since this time 4 years ago. The news that they will be repaving or resealing our parking lot, right outside my window. This ground treatment 4 years ago started the cascade into starvation-inducing loss of tolerance and suicidal levels of pain. And it is just two days away.

Last time, I had an escape hatch. I was still able to stay at my mom's house. I had to check my blog to find out when this happened. What I wrote at the time:

"I struggled so much when they resurfaced our parking lot. I couldn't be home at all. I became completely manic after brief exposure." WTH. Brief exposure made me manic? So what is 24/7 exposure going to do? I know I won't be able to air out at night or open the bedroom door or use the AC. I am trying to figure out how to protect myself within the bedroom. But I am not sure how I will survive with no escape. The heat alone would devastate me. Cause escalations and progressions. It has been devastating for me. But there will also be the bombardment of fumes from whatever horrible shit they put on the asphalt.

I've been following the rules of anxiety and keeping the knowledge that this day would come tucked far away in the back of my head. And now, it's here. There is always further to fall, and suffering has no limit. So I am attempting to brace myself for the onslaught of being trapped in my sauna prison 24/7, presumably with a level of inescapable intrusion of fumes, and with no overnight freedom. This is not a short process. The treatment still smells very strong a year later on any hot day. All blacktop does, really. These fumes do not pass in days or weeks or even months. My only relief will be when the weather cools off. But by then, I will already be down the next downward spiral.

So it was the heat, and then it was the doctor's office, and now it's the asphalt.

I say it every damn time, but if it's gonna knock me down again, it'd better finish the job. If only we allowed people a merciful way out of a life of hell. I know I'm trash. I know. I'm a speck on a pebble in the shoe of life. Why would I think I mattered? But here it is. It is upon me. I don't know how to face it. I can't imagine being able to distract. My capacity has already shrunken so much from the 3 minute exposure at the doctor's office. My ability to engage with my needed distraction (Spanish class and study) worn away by pain and stupor.

I am afraid. I'm writing because I'm afraid. I have had another two friends pass away from conditions related to their mast cell diseases, made worse by their chemical exposures and the inaccessibility of medical care. There are others like me. I am not alone, but in reality, though I know of them, all of us with this severe level of chemical reactivity are alone. We are mostly unknown. In many ways, we slip away without the world noticing. There should be somewhere safe in this world. There should be help available to those who suffer in this way. But there isn't. There just isn't.

Some part of me wonders, when I read through the last posts and last messages I had with my friends, which will be my last messages? What will be the thing that finally pushed me over the edge? Do I actually want it to come soon, the way I truly believe in the weeks after an exposure? Or do I wish for this existence to endure? All I know for sure is that those who care the most for me do not deserve to lose me, to grieve me. But for the record, I do not consent to medical intervention without my knowledge. I don't agree to be brought to a hospital if I am unconscious. I only accept medical care on my own terms, which is currently none.

I hate to post all of this after more than a year of silence and disconnect. But at the same time, I feel compelled. A silent scream into the nothingness. I don't even know the point. I don't know what good it does to write this. If I can't put anything positive into the world, maybe I shouldn't be allowed to put in anything negative either. I don't know who I want to read this. I don't know how I would benefit from expressing this. But maybe it's just for the record. So when someone looks back to see what was going on with me, there will be something there.

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.

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.