Mid April 2023

I'm finally posting this explanation I wrote up a while back of one of the thorns in my side: Migraine with Brainstem Aura accompanied by Disorders of Consciousness

https://www.dovepress.com/migraine-with-brainstem-aura-accompanied-by-disorders-of-consciousness-peer-reviewed-fulltext-article-JPR#t0001

https://migrainetrust.org/understand-migraine/types-of-migraine/migraine-with-brainstem-aura/

For so long, I've been experiencing this disordered consciousness and calling it "passing out," even though that doesn't describe my experience at all. I don't remember which of my many neurologists mentioned basilar migraine or brainstem aura as being responsible for these horrendous episodes.

But I feel the need to describe them better, because while it sounds easier to say, "I was passed out for 2 hours," it frustratingly miscategorizes the horrific experience.

So, here's what I tend to experience. Honestly, it used to have a much more perfect shape of typical migraine aura, but with chronic intractable migraine, this state comes and goes without the same form it might otherwise have (and used to have for me before progressing to a chronic waxing and waning state.)

Frequent symptoms:

I might start with a yawning spell or get the chills. This prelude used to happen more but less so now. It was a nice dead giveaway that I was about to be overcome.

I do tend to have tachycardia in the hours before an episode. Around 100 or higher, depending on the heat or severity.

Vertigo

Tinnitus

Tingling in legs/arms/head

Abdominal inflammation/heartburn

Heart pounds as I feel extremely heavy

All sounds become amplified to a cartoonish degree, and they tend to startle me.

Difficulty speaking followed by difficulty understanding

Eyes get very heavy as heart pounds with tingles up and down my body

Full body aches and head feels like imploding

Face feels like a mask that I can't move

Intense sensation of nausea as paralysis sets in

I tend to go in and out of consciousness, being disturbed/startled by any sound or movement. I also get the sensation of falling into unconsciousness repeatedly. Hard to describe.

At this time, the body feels like it is making a massive effort to remain conscious. It is not a restful feeling with all of this chaos happening in the body.

During severe episodes, I can track the time I lost to full unconsciousness, where nothing could rouse me. This lasts up to 3 hours. (I have had Neuro checks while in this state and found to have no reflexes.) But quite often, I actually come in and out repeatedly for hours.

I tend to come to awareness of my surroundings first without being able to move, then gradually recovering. As I gain alertness, I sometimes have a sudden need to evacuate bladder/bowel.

After I am awake, I lack coordination, have vertigo, and the pain of the lasting headache sets in. Location is usually generally pretty global, focused above both temples with continued tingling scalp and tinnitus. Sometimes icepick headaches follow.

This is absolutely not a restful state. It is like a storm going on in my body. In fact, migraine has been described as an electric storm in the brain, which alters blood flow and causes inflammation of the meninges and nerves.

https://www.everydayhealth.com/outside-in/what-happens-body-during-migraine/

Following an episode, I remain in a state of cognitive overwhelm, my brain tiring quickly from any type of stimulus, leading to frequent mental shutdowns. I can fall back into a stupor mid-sentence.

New migraines come in while the previous one is still in progress, leaving me in this state constantly to varying degrees.

The experience is reminiscent of symptoms of a traumatic brain injury. Brain rest is the only relief. Minimal light, sound, movement, talking, and cognitive effort. I have a lot of trouble understanding what is being said, following a conversation, and retaining information.

This is not a fleeting state. And it is not a nap. It is scientifically classified as stupor/coma in the above studies, the coma version confirmed by my failed reflex testing.

An incredibly frustrating part is the cognitive overwhelm triggering more and worse episodes. This leads me to avoid interacting beyond necessary much of the time. Even talking can set it off. 

I have reached this point for various reasons, primarily inability to tolerate migraine treatments, although they had already become largely unmanageable when that happened. Either way, untreated chronic migraine can lead to a transformation into a state of constant migraine. Mine just happens to come in various shades, including various types of migraines.

OK. That's my explanation, for the record, of my experiences with frequent loss of consciousness.

Now, I would like to continue sharing my day-by-day journal of symptoms and challenges.

April 8

I had to switch my rings to my right hand, because for the first time, they won't stay on my left. That must be a further show of deterioration. I need to take video of my movement to document what is happening. My legs won't straighten, so I'm hunched. I can usually only take the smallest steps with legs staying at the same angle of somewhat bent. My leg muscles are visibly wasted, and they ache terribly. I think this is where the weight loss came from.

Just 11 days after my last house visit/car ride, when the switch flipped giving me a whole new body, I painstakingly decided to go on another house visit. G was incredibly careful with the route and the driving. Incredibly helpful moving me around. It was very sad to learn that I cannot navigate even a single step anymore. He had to take basically my whole body weight going up a step, and I rode on his back going down the steps. We couldn't have done any better to be as gentle on my body as possible. We did well. But not well enough to avoid consequences. I did not feel nearly as shaken up as last time. But I did go in the house, and it was not unscented to me. Fragrance was evident. As always, it's immediate upon opening the door, I'm aware of the fragrance. I don't know why I even go in. It's instantly evident. I guess a part of me wishes it will be a scent that is highly localized somehow or that it is a scent that somehow won't hurt me. But that is delusional. Right after the house, I developed a new left ear/swallowing type of pain. And upon arriving at home, right after rinsing my sinuses and drinking some baking soda for the horrendous heartburn, I was struck with the brainstem aura with prolonged, repeated loss of consciousness yet again for over two hours. All the horrendous accompanying sensations. All sound amplified and painfully startling. Heart pounding. Burning face. Body feels like it weighs a ton when I am paralyzed. Repeated sensation of falling while passing out over and over again for hours. I don't know how long I was actually unconscious and how long I was in and out. It felt endless. It was hours before I could rouse myself enough to eat a meal.

***And I'm interrupting my diary notes to say that this has happened during the same time of day every day since that day. 7:00-9:30 seems to be my new aura window.***

Upon rousing, I had marked weakness, needed help walking at first, and also needed help to open food containers. I had lost so much strength and could barely lift a container with a few cooked vegetables inside. My knees are also burning more than ever before. My heartburn is insane. Fever at 99.9.

Admittedly, this isn't close to my worst episode. I don't know how tomorrow will be. My fever and cough are not as bad as they have been. Fever peaked on April 6, I believe, at 100.9. I've been sweating through my clothes and into my sheets with this fever every night since March 28th, that fateful day.

Life is about to get much harder with the temperature. I won't have the luxury of passing out in my recliner, and trying to manage to do everything in the bedroom will be even harder. Being confined to only one position with nowhere to be but bed increases pain and weakness so much. It's very hard on my sacrum, tailbone, and spine. Getting in and out of bed is getting close to impossible. And eating whole meals in the bedroom cannot be how it was before, since it was a careful balancing act using the bed tray. I now can't really get my legs under the bed tray since they don't bend far enough. These warmer months will be so hard. Never any peace and quiet, because I'll never be able to be in a room without the purifier on full blast. Relentless scents and wind. Plus, that air purifier heats the room up another 3 degrees. Unfathomable in these upcoming warm months . That's just no rest. And functioning will be even harder. I won't be able to hurry around to avoid the scents, because my body only moves in slow motion now. To a shocking degree.

This is why we keep searching. But another lesson we learned today is that I cannot even manage a tiny stair. So a flat surface will be necessary. This place was almost impossible to get around, even the tiny space. I am going to be getting an upright walker and hoping to be able to use that for some time before full wheelchair. I would get one now, but it's difficult to imagine being able to use it in this space. But it would be downright impossible to get around ground that isn't flat. G had to lift me, again, as an invalid over a few of the steps. Basically a limp body. It is hard to describe how bad this feels, despite being a self-accepting disabled person since my 19th birthday. My first wheelchair was all relief. There was grief, of course, but I don't mind using a wheelchair part time. However, I am fully unequipped to manage life without any mobility. I think many spatial changes would be necessary. But the problem is that it's not just the walking. It's needing assistance with nearly every activity of daily living. Sure, I'm toileting myself now. But that's because my left hand can still manage that most of the time. But it hurts. And the left hand won't hold on forever. The right hand is almost useless. I also have the most trouble walking when I first wake up, for that first bathroom trip. I can barely hobble my way there, despite trying to stretch and straighten my legs before standing. My legs are bent in a deformed way with muscles shriveled away. I am not able to accept this right now. That this is just how it will be until it gets even worse.

Anyway, all we can do is use this info going forward. All that we learned today, we will use. I feel less confident each time the door opens to a scented home that is meant to be unscented. I don't know how to keep hoping. I don't know how to keep using my body as a test dummy. How to keep abusing myself that way. I don't know how I will ever find my place. And what will be left of me when I finally do?

April 9 more prolonged and transient loss of consciousness. Preceded by yawning spell (very painful yawning) Pain in left ear/jaw became a 8-9 with yawning and swallowing.

Digestion got dysregulated by being unconscious so long yesterday and again today and meals running late. Heartburn and bloating are the worst, along with loss of bowel regularity. More scent issues today, but I didn't retreat to the bedroom yet. Days are numbered. Knees are very bubbly, stiff, and hot. I would ice them all the time, but the cool only lasts a few minutes since my knees put out so much heat. G stayed home from Easter to be with me, and then I was mostly unconscious. Cough persists daily, worsening at night. Fever not too high. 99.7 Not sleeping as well/long as I was. Mid back pain, presumably from hunching so much.

April 10 Had trouble sleeping last night in the warmer bedroom. (77 degrees) Air purifier adds 3 degrees. Very hard evening. Losing consciousness for a while. That horrific feeling I can never get used to. Intense left ear/face pain. Had to cook a lot of food unaided (with tomorrow being a warmer day, I don't know if I will have access outside the bedroom). Then, I had to shower. Coughed so hard during the shower and after. It feels difficult to breathe. Could barely use hands to wash my hair in the shower. Body ache and pain afterward intense. Widespread 8 with some hot spots. Feeling nauseated and short of breath and hot/cold. Temp 99.8.

April 11 Slept in warm bedroom (77.5). Couldn't sleep enough. Woke up with fever of 100. Some daytime exposures due to warmer temperatures and vape fumes. 6:30-8:30 passing out time again. Fresh air access at night. Asthmatic breathing/coughing constant since last night. Nighttime fever 100.6. Hot and cold. Jaw/Facial pain less today. Joint pain a half a degree less today (maybe?). Plaques are softening/fading. But fever and cough are persisting. Cough is the worst it has been. Very feverish late 100.6, 90/60p90. I cannot sleep well due to the elevated temperature and fever and pounding heart.

April 12 Bedroom confinement all day. 79.5 degrees for sleep and daytime. Neighbor used horrible fragrance today. Stinks up the lobby and our bathroom worst, but detectable throughout the apartment. Also repeated vape exposure inside and outside my open windows, filling the place. Fever same 100.5. Asthmatic cough again. Lung pain.

Unbelievably bad walking after rest time. Not sure how to keep walking to the bathroom when I wake up. Legs no longer straighten under any circumstance. Shrinking leg muscles feel like they're dying painfully. Barely any leg muscle left. Progress has been so fast. Everything deteriorating. My legs don't straighten, but I can also hardly bend them. The bubble popping inside the joint is worst when I try to bend my leg to sit down. More severe in right knee. I haven't figured out how to reliably avoid the excruciating pop. But I have no choice but to try.

Bedtime vitals (6am) 88/60p98. Bedroom temp 80.

April 13 only slept 6:30-12:00. Worried about the effects. More summer weather and bedroom confinement due to smelliness.

Day full of consciousness struggles! No naps. No drifting off. It's the migraine with brainstem aura symptoms more or less the entire day. This is NOT the same as when I used to pass out from low blood pressure or blood volume or whatever. This is a horrendous state. A neurological storm. I did not get to rest all day. My body could not rest with the onslaught of symptoms pushing me in and out of consciousness. I struggled most between 2 and 3, 4:30 and 6, 7 and 9, 10-10:30, and again 1-2am. I missed class, which I never do. Not sure if this would have been avoidable if I had tried to "let" my body continue "passing out" all afternoon. I think the amount of sleep deprivation plus the hot apartment (79.5) were way too much. Plus the overnight fever. I desperately want to figure out how to sleep when I have a fever AND the apartment is hot. I think I need to time my meds differently and plan for biphasic sleep again, but that means two wake ups, and waking up and getting out of bed is a horrible time in my day. I don't want to do it twice! But sleep is too essential to avoid more brainstorm auras. My heart rate has been in the 90s again all day. Fever a bit lower. My body feels so hot, but is only 100.2 tonight.

April 15 Another horrible, hot bedroom day. Sleeping at 80 degrees is sickening. Biphasic schedule necessary to make the meds last longer. So my day started after 3pm. Confinement in 80 degrees bedroom. Heart rate often above 100. Brainstem aura from 7:15-9:30. I came out slowly for the need to eat. Stayed conscious after that, but felt awful. Finally fresh cool air from 1:00-4:30. Bedroom down to 72 to start. Hoping I can sleep better despite fever asthma and heartburn (and joints, of course).

April 16 We had a nice cool down, and after a night exposed to clean cool outdoor air, I slept comfortably. (Although I'm still sweating through my sheets with this fever.) (Bedroom about 73) Waking up, movement was excruciating. Today, much cooler but big pressure drop along with storm and temp drop. Body pain was terrible. Mobility and hand ability were low. Hard to hold things. I needed my walker much of the day, although I still can't put any weight on my right wrist. Left hand is more functional but still painful. Back is getting very sore from hunching so much of the time. Terrible bubble pops causing worse stiffness. Fever consistently 100 today. Asthmatic cough got worse at night. Invasive fragrance improved with temp drop. So I got to relax in my recliner finally after a shower. Just barely maintained consciousness today. Each day is an enormous struggle. Cannot imagine continuing at this severity.

April 17 Apartment is nice and cool, although quite chilly when I had to ventilate with no heat. But worth it, as usual, to get fresh, clean air, whatever the temperature. With a cool bedroom, I was able to sleep all in one go again. A hot bedroom is TERRIBLE for insomnia (especially with a fever). And we were at 80 degrees in the bedroom. I still had my overnight fever sweats. But I woke up easier. Fever has been 99.7-100.3 today. Feels terrible. I actually functioned a little more independently today. I ordered a new upright walker to try to help with my mobility limitations, inability to put weight on wrists, and increasing back pain from hunching too much. In my mid-morning time (about 4-5pm), I was tachycardic and weak. Heart rate 103. And my body seems to have found a new circadian schedule for when the brainstem aura tends to come. It seems to be happening more often between 7:30-9:30 at night. I'd normally eat my third meal around 8, so this really interferes with my eating schedule. My knees have been bubbly and warm as ever. There's the extreme stiffness when I first stand up, and then the longer I stand, the more bubbles I seem to accumulate, making the next knee bend so painful. Hands and wrists are the same. Asthmatic cough is worse tonight. And it really aches in my ribcage when I cough, probably pleurisy again, but it could be muscular, I guess. I almost published this update to my blog, but then got distracted reading my blog, which happens so often. I guess I find myself endlessly entertaining! Not really. It's actually really hard to read that my life is on a revolving and ever-worsening loop of suffering. I've yet again noted that there's no point in expressing emotions, because I've already expressed them all, for years. I also noted that I was totally wrong about no fever flares since 2020. I absolutely haven't gone a year without it.

I had a tough decision to make today. Whether or not to venture out again already, in the midst of this bodily thunderstorm, to visit a house. There's been a shift in the housing market this week that is not in my favor. A house I was interested in over the weekend had 40 house visits in the first two days on the market. There is no possible way to clear out the scent of that many visitors. And there's no time to ask screening questions. And there's no time for someone else to visit first and pre-sniff the house for me. So there was a cute little house in a cute little neighborhood, vacated, that I could have gone to visit tomorrow. But without screening questions, I had to rely on photos. And a can of air freshener (f-er) was visible in a main floor bathroom. Based on everything I've seen so far, there is no way that house won't stink at first entryway whiff. Not to mention a more practical matter that I cannot walk stairs! And there are stairs to get into the houses. Gustavo can't come with on a weekday, so there's no one to lift me up and down the stairs. It's not that stairs hurt. It's that I'm now literally incapable. So I believe house shopping will have to go on a hold, preferably at least until my fever and asthma stop. Even more ideally, I would come a bit more out of this flare and get a slight pain reduction and increased functioning. I know I've had fever flares before. And they end. So I just need to wait it out, I think. But with the tumultuous barometer and plenty more hot nights ahead, my body will be under plenty of stress. So I'm not sure when it will calm. I can't imagine going on if it doesn't calm. I am trapped in this torture chamber body. I need a break. A respite. At least I'm in the recliner again today, and I can expect a possibly decent sleep again in this chilly apartment.

April 18 I am very at peace with having made the right decision to not visit the house today. My fever started at 100, never lower. Up to 100.7 tonight. My heart rate hasn't been below 100 all day. All signs that my body is in high distress, and this flare is not slowing down. Also, I finally attended part of a Spanish group chat, but I wasn't able to talk due to the breathing issue and coughing. My triggers for asthmatic breathing and coughing seem to be: eating, allergens in the outdoor air, and evenings. Although today, it was nearly throughout the day. I am so tired of coughing and not getting a good breath. This is nothing like the throat closing spells of my teens. This, I feel in my lungs. I bet an inhaler would feel good if they weren't full of triggers. Although I don't need that crazy, manic energy.

I had yet another brainstem aura episode from 7:30-9:15, although I felt it coming a lot longer. I was also getting skunked by the neighbor vaper, yet again. I am so relieved the temperature has been lower, so I can sleep better. I know it won't last, but I'm so grateful.

My knees are as horrible as they've ever been. My muscle wasting looks crazy. I'm not sure if I should share photos, because they just look so ugly and deformed.

Oh well. I might as well, for the record. I honestly just want there to be a record of what happened to me. I lost another mast cell friend recently. Another truly tragic loss. It's hard to bear. When they tell you people don't really die from mast cell disease or autoimmune disease, they're lying. Yes, the cause of death tends to be more complicated. But these complications can and do happen, and they are incredibly difficult to manage (especially for those of us that don't tolerate medicine, like my friend).

I'm sorry for the repetitiveness of this post. It was written at many different times. Thanks for reading and caring.

Yes, I've taken a lot of photos of my legs. I'm truly shocked by the progression and degeneration. And it's also a shock to, for once, have something quite visible happening. I guess the crash weight loss the last several years was already visible. But I'm so used to the idea that I have an invisible illness. My plaques are quite palpable, but pale in color. My explanation is that I have very little melanin! But little by little, the invisible becomes visible. I know my face has changed so much. Swollen eyes. Unevenly swollen cheeks. But these new developments are much more blatant. I'm not much for physical appearance these days, but no one wants to feel like a deformed version of themself.

Thanks for checking in. I expect to write again soon, as it seems that journaling has become a helpful tool again. I'm not proofreading, however, if you couldn't tell.

Another Progression

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

These are the new symptoms:

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

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

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

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

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

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

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

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

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

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

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

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


Precipitating factors:

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

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

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

Various exposures/repercussions

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

Interaction with medical personnel also triggers high stress.

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


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

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

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

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

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

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

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

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

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


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


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


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

Sinking Ship

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

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

Practical issues:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

-Grieving Grandma. I will never stop missing her.

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

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

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

-Loss of mobility and cognition

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

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

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

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

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

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.

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.