MCAS is a difficult disease to explain. I always feel on the spot when I am asked to explain. So I put together this blurb, attempting to summarize a complicated condition:
I have an immune system dysfunction. My main immune system cells (mast cells) get set off abnormally by seemingly benign triggers, including most food, most environments, most medicines (and inactive ingredients), and even things like vibration, exertion, and weather. It is impossible to avoid all my triggers. The activated mast cells cause great amounts of inflammation all throughout my body and even damage connective tissue, which causes a huge variety of symptoms--primarily pain, fatigue, neurological, GI, allergic, and cardiovascular. There is a risk of anaphylaxis to just about anything. Reactions can be severe and prolonged. Due to this, I am essentially always suffering from overlapping reactions. It's a very complicated and uncommon condition that is not easily treatable and very difficult to control. My case seems to be particularly difficult due to widespread food, medicine, and environmental intolerance. Some people's hyperactive mast cells are more discriminating, but mine seem to degranulate from just about anything, including the medicine that is meant to treat it (and that helps many other sufferers).
That's about the best explanation I could come up with. It doesn't come close to describing the struggle, but it's a start.
I've been thinking about the sacrifices my illness demands of me over time. How I have been chronically ill for so long, but it really is a different level now.
Previous sacrifices I had to make (let's say late teens through early 30s):
using a wheelchair as needed
giving up going to the gym
giving up going for walks for exercise
days in bed to recover after a night out
only very basic, restful travel
less food choices
giving up shoes and hair/cosmetic products
I could make careful plans and only have a 50% chance of canceling.
I could only run a short errand independently when feeling up to it.
I could never work as much as I wanted to or support myself.
I could not have a child.
Most of those seem trivial now. The types of sacrifices I have to make now:
the ability to cook/be around most food
holidays
public places
visiting at people's houses
attendance at funerals and weddings
seeing most of my loved ones
hugs
leaving my condo
access to medical care and pain/symptom management
most medicine
access to emergency care
being able to meet my nutritional needs
I have learned to dream smaller and accept less and less of this life.
I don't know how many more body-on-fire, heart pounding, insomniac, face exploding reactions I can handle. I don't know how many more progressions I can endure. When I trial something, and I react to it, it's not just the symptoms that day or that week but the escalation of my baseline level of mast cell activation that is really scary. I have to be able to tolerate that baseline to find the will to keep going on. Only I have to live in this body. I experience 98% of my symptoms completely alone. I pay for every trial and every exposure. Every time a neighbor smokes too close to my window. Every time a neighbor burns food or does laundry. Every time anything comes into my environment that I can't avoid. Every infection I catch, despite my isolation. Every medicine trial. Every attempt to add a food. Every trip to a doctor or a new environment. I suffer for it, and the condition progresses.
Well, the last time I wrote, I was in a flare that began in July. That flare has persisted and progressed constantly since the summer. In July, I made a list of triggers that had spurred on the flare at that time:
trialing hard-boiled eggs
a new reaction to yellow dye in medication
exposure to cooking smells and smoke smells
the severe pain of my herniated/ruptured disc injury in June (level 8-10 pain)
storms/barometric pressure highs and lows
insomnia
the chimney smell and the smell of the chimney treatment
high stress/grief/sobbing
The symptoms I was experiencing regularly from these triggers were the following (also a good summary of my symptoms in general)
severe pain (localized and generalized)
burning chest/face/eyes/crotch
insomnia (yes, a trigger and a symptom)
lethargy
brain fog
agitation/manic energy
severe itching of the nose/eyes/throat/chin/surgical area at the back of my head/neck
raw tongue
pounding heart
diarrhea
crawling/tingling skin
trigeminal pain
stupor
migraines with auras (At one point, I had a migraine 86 of the last 90 days)
repeated syncope while supine (not related to blood pressure. At another time, I had 3 migraine auras in 24 hours.)
shortness of breath
hot flashes
waves of goosebumps
Then, in August and September, I experienced an elevation of the flare. Exacerbating factors were attempted visits to mom's house (which I had become reactive to), trialing a medicine called Zyflo, outdoor visits with my nephews with many exposures (smoke/laundry smells), weather changes, breakthrough bleeding leading to menstruation (first in many years), a failed food trial of coconut butter, exposure to a strong smell of burnt popcorn that had severe effects, and a high emotional stress weekend with total insomnia. I also had the flu from August 31 to the end of September. It presented with high fever and extreme body aches and a persistent cough. By October, I had reached a completely intolerable state 24/7.
I had constant migraines/pressure in head/face, burning inside, itching all over, allergic symptoms, agitation/restlessness, pounding heart, constant shortness of breath preventing movement, reactions to all food, inability to concentrate on anything, GI distress. My body was on high alert. I felt constantly like I had been running for miles and couldn't catch my breath.
So, in early November, I could not stand my existence anymore. I had to make changes. I had to give up my only remaining mast cell medications. I believe I began reacting to gelatin in 4 of my medications, including Zyrtec, Benadryl, Omeprazole, and Melatonin. At that time, I wrote this diary entry:
"My tiny world keeps shrinking. The torture of daily existence keeps getting worse. I'm tired of pretending I'm not deeply depressed to protect others when I have been for so long. Tired of pretending to be strong or happy when I am irrevocably broken and hurting all the time. I can't see my life decline for so many years and just pretend that I don't see it. I can't pretend that sitting alone in a condo watching TV and trying not to think about anything is a life. I can't pretend that I am okay with never being a mom. I can't watch a friend dying an agonizing death from this disease when hers is so similar to mine and pretend that it couldn't be me, that it won't be me. I can't pretend that I'm strong enough to go on without my Wilma when she was my baby/soulmate/reason for getting up. I can't pretend that I am independent and strong when I am not able to be an adequate life partner to my husband. None of it is okay. I can't pretend that I am not this depressed so that others will worry about me less or take me more seriously in terms of my illness. I don't know how to keep tracking my triggers and symptoms and managing my health and scheduling appointments and trying new things and believing that anyone can help me, that there's any point besides looking like I tried. But I hate myself for not being strong enough. I hate that my weakness keeps making my mom spend her days crying and makes my husband dread home. I need to be strong, but I don't know how, and I don't know how to fake it anymore.
I don't even know how to respond to messages of encouragement. I can't fake it. Yeah, this is one phase. Life will change. It won't stay this bad. Meditate. I know. I do. Get therapy? Yeah, I know. I don't feel like it. I don't have any more of myself to give. It is taking everything I've got to keep eating, brushing my teeth...that's about it.
I don't mean to have a pity party. I know it could be worse. I do have gratitude. I'm just tired of looking for things to be grateful for right now."
So, the good news is that that intensity of depression did calm down. Getting off of anti-histamines after so long can really affect your brain. All this time, I was carefully tracking triggers and symptoms as best as I could. So I determined that the gelatin was causing me a flare up of all symptoms, including itching, allergy symptoms (ironic), diarrhea, and most prominently, the severe constant shortness of breath. My POTS had become so much worse, and I could pass out just from talking. My lips were white all the time. That actually vanished when I stopped taking those medicines, despite my mast cell disease being unmedicated. But I also determined I was reacting to my nightly potato chips. They had begun causing overnight diarrhea and severe itching. I did not realize at the time just how much I was relying on those calories! This brought me down to five safe foods plus almond milk in my diet. But there's also the looming threat of losing food #5 since my cereal was discontinued, and I am nearly out of my stock of expired cereal.
I then began reacting to my Miralax, which I have been taking for half my life. That was a rough one, because I have not found an adequate replacement for having normal bowel movements. But unfortunately, it was causing worsened insomnia to the point of staying awake until 7:00 AM some nights. I was also getting a big adrenaline rush from it, hot flashes, and a pounding heart. I have experimented with different forms of magnesium as a replacement. I am still working on this problem.
So, I did a trial of compounded Benadryl. I took the capsules as the doctor ordered, hypromellose capsules (which I know I tolerate) with microcrystalline cellulose as a filler. It did not go well for me. It caused severe burning in my esophagus and throughout my torso. It also caused me to feel very agitated and paradoxically worsened my allergy symptoms. So that was trash. It is possible to react to some cellulose and not others since there are various sources. So this is basically a wash for me.
In early December, I got a cold with a fever around 100. (I run low normally, so this is a low grade fever for me.) Also in December, I was having to experiment with different laxatives and do trials of different cereals to replace my discontinued cereal. I also trialed rice flour as a potential safe filler for compounded meds. Nothing went well.
I tried the reformulated Morning O's cereal first. The only ingredient change was the rice flour had been changed out for wheat starch. It tasted a bit grosser to me, but I barely noticed the change and didn't expect to feel much change. It ended up being a cumulative reaction. It started with skin crawling/waves of goosebumps, diarrhea after each meal, leading to a late night hypomanic state and not being able to sleep until most people wake up for the day. I was increasingly agitated and anxious. My heart began pounding after all food I ate. So, it was a fail. That hypomanic state is how I know a trial has definitely failed.
The next one I tried was organic oat flakes. These had one problematic ingredient (fruit juice). Otherwise, I really thought they could be safe for me. It was actually a really delicious cereal (compared to everything I normally eat), and it would have been such a good addition to my diet. I believe the problem was the fiber content. It triggered my gastroparesis so badly. Fullness and bloating and severe heartburn lasting for many hours after a single serving. I kept decreasing the portion, but I couldn't decrease it enough to avoid those symptoms. And I wasn't able to eat much other food in a day.
That was around my birthday. Around this time, I noticed that my clothes were all falling off of me. I finally got on a scale and learned that I have lost significant weight. MCAS causing varying levels of swelling from day to day as well as GI irregularity and bladder retention makes my weight fluctuate, but it has ranged from 94-101 lbs in the last couple weeks. This is very concerning, and I am doing everything I can to improve the situation. That puts my BMI under 16 some days. I swear to you, I have thought of everything, and I am trying everything.
Then, just for fun, I got sick again for New Year's Eve. Another cold. Another low grade fever. The fever causes heart pounding and insomnia and generally angry mast cells. So it's been rough since then.
I have kept trialing foods. Plain oatmeal was a failure, also due to digestibility. Nothing goes down easily compared to my safe cereal, my organic Toasted Oats with a very specific recipe. I am still eating it between trials, and it calms my whole system down on those days. I am down to my last few boxes.
I came up with a biscuit recipe to try with oat flour and olive oil and almond milk. Unfortunately, I included cream of tartar in the recipe. I believe that has been the flaw for me, leading to me experiencing the pounding heart and random burning and now a very manic night. So, I can ask my mom to remake the recipe without the cream of tartar. I don't know why I even included it to begin with. I customized the recipe from a few others that I put together. I think omitting it could be the key for me.
So, that brings us up to today. My immune system is a wreck, so I still have a fever, and the cold symptoms have been really severe. I've reached a ridiculous point where my body temperature is consistently higher than my weight. Yikes. In addition, I got a yeast infection down below that is not going away with OTC treatment. Really frustrating and scary. I haven't had to see a doctor in quite a few months, so I am really dreading making my situation any worse than it already is by going in my most scented doctor's office. Ugh. I haven't actually gone inside anywhere in many months. Just my condo. I really hope I can avoid that appointment right now. I may even try a yogurt suppository before resorting to going in. (Although I am very overdue for my exam, so I can't put it off forever if I want to continue my birth control. Also, I've had breakthrough bleeding each time I have a fever, plus ovary pain at times, in addition to my ongoing yeast infection--or what I assume is a yeast infection.)
The good news, I guess, is that I am not in such a deep depression at this point. Between trials, my system is not stuck on high alert anymore. I am also keeping busy doing piano arrangements. I learned about a website that obtains the copyrights to many, many popular songs. So I have been busy writing arrangements. I am not selling much yet, but I'm hoping that will come with time. It has been keeping my mind busy so I can't dwell too much on anything. I suppose it's emotional avoidance, but I could use a break from all that emotion anyway!
Sorry for another long essay. I have just been unable to write/think or been busy distracting myself.
I will end with the note I wrote on Thanksgiving:
"I am grateful for those in my life that try their best for me, even when their best isn't good enough. I am grateful for those who still care even though I'm not the same and even if I can't see them anymore. I may be sad and alone and crying now, but I am still grateful for these things."
^^^This was written on Tuesday night. It's now Friday night, and I haven't shared my post yet. So I've already got some additions:
My emotions are complicated these days. I do get severe emotional breakdowns that can be extreme and immediate after particularly intense exposures. Usually, my affect is blunted during the day, but my feelings come out at night, when I am less foggy. But generally, I actually suppress emotional expression (and suffer extreme brain fog/fatigue/apathy) throughout long reactions, so just as things start calming down, I have the total breakdown. (kind of like...How is this my life? How can I keep living like this? How can I keep suffering this much?) There tends to be a degree of suicidal ideation.
Sleep disturbance is a huge problem for me. My reactions to interrupted sleep are so severe. That is when I go into sympathetic overdive. Heart pounding, startling easily, definitely jittery, but also head pressure, brain fog, malaise, nausea, gastroparesis, and flu-like symptoms. I will usually be very cold. I also tend to feel very anxious the next day or longer. I am also prone to develop trauma responses at this time, as I learned this past fall.
It is why I had difficulty caring for my elderly dog with dementia near the end and why I cannot get another dog, despite my heartbreak. Even if I could find that magical dog with very low energy and that I'm not allergic to, I cannot tolerate sleep disturbances at all. I become overly reactive and more prone to new sensitivities as well. No dog would let me sleep the ridiculous hours I sleep these days.
It is absolutely terrifying rereading this post and realizing just how rapidly I have been developing new intolerances. The weight loss is scary. The progression is scary. My immune system is obviously a wreck and has been since August 31, when I came down with a horrible flu. My temperature was 103. My body pain overnight was a 10 for three wretched, insomniac nights. (Thanks, mast cells for amplifying an already rough situation.) I had that infection (fever, aches, and a cough) for an entire month. Then, I got another one at the beginning of December and another at the beginning of January. Those have been basically head colds, but I get fevers and amplified symptoms to even a basic cold virus. I have been in near total isolation during this time. My loved ones get flu shots and avoid me when they are sick. I should not keep getting sick. But this is why they call it an immune dysfunction. Here's an article explaining why my body reacts so badly to infections: https://www.mastattack.org/2015/03/allergic-to-infections-how-bacteria-viruses-and-fungi-activate-mast-cells/.)
During my September infection, I developed severe breakthrough bleeding and cramping that was not suppressed by my continuous birth control. So I allowed my body to have a period. Came to learn that I am allergic to feminine hygiene products now. And I think I have had irritation since then that progressed with each infection. Initially, about 10 days ago, it was pretty clearly a yeast infection. And it responded to Clotrimazole, but only partially. I am on my third course of Clotrimazole, and while I don't have much daytime irritation, I do get a lot at night time. (Here's a fun article on the circadian rhythm of mast cells, explaining why all of my symptoms get so much worse overnight and why I can't sleep during normal human hours: https://www.mastattack.org/2015/04/circadian-rhythm-of-mast-cells/.) I have the worst of my itching and histamine symptoms overnight, which often prevents sleep until nearly sunrise.
So what do I do about this yeast infection? Could it have evolved into bacterial vaginitis? Just treating the yeast with the OTC cream is flaring up my mast cells. I don't know what other treatment I could even tolerate. Should I try to schedule an e-visit with a random practitioner since this is a pretty generic problem, or do my complicating factors make that pointless? Do I need to try to get in with my gynecologist this week (in his very scented office)? Can I possibly risk that when my health and well-being are so precarious? When I am desperately trying to find a new food? Should I try less conventional methods like yogurt suppositories or boric acid suppositories? I have no idea how my body would react. Is there any chance that this is just another way of my body displaying mast cell activation that is amplified overnight, and there is no actual problem remaining?
I am scared that my attempts at replacing my dwindling cereal supply have all failed. And honestly, these food trials are just straining my system more and making me more reactive. But if I weigh this little while eating cereal (at least 3 servings a day, probably 4), what on earth would happen to me if I could no longer eat cereal? I still have a list of foods to try and grocery bags full of options. It is just so much to put my body through. And I would really like to maintain oat as a staple food. But unless it's in that specific cereal recipe, I haven't found a way to tolerate it yet.
I feel like I am reacting to the pure Milk of Magnesia I'm trying as well. It causes burning inside, at the least. So did the pure magnesium powder I tried. It makes my mouth and chest feel raw. And it absolutely does not make me regular. Did I really have to lose Miralax? It worked so well for me for so long with no worries of extreme urgency or total failure to do anything.
With all this flaring, as of today, I reacted to all digestion. As soon as I start eating, I react. That makes it very difficult to try a new food if you don't have any days with a baseline level of symptoms. The weather is really not helping me either, contributing to migraines and a stuporous state.
It's also very scary to know that I have some trips out of the home coming up:
I have to see my psychiatrist in February.
I have to see my mast cell immunologist in March. (Although she has been on an extended medical leave, so I have to keep my fingers crossed that this appointment actually happens. Even though she hasn't been able to help me yet, I would be truly on my own without her.)
I have to reschedule my autonomic neurologist, since I am also scheduled to see his PA in February. I am hoping to put it off a few months to keep appointments spread out and avoid the disaster of March 2019 (when I lost so many safe foods and meds, including peanut butter and butter!)
I clearly need to see my gynecologist, but I don't know when to fit it in.
These are all annual visits. That is all I have. I just cannot risk any more appointments than this. But even this much is a risk. I got a new respirator that will hypothetically be a bit more helpful than my current one, but I'm waiting for it to air out its initial smell. I don't know when I will be able to use it.
Well, I had a lot of worries to get out, so hopefully my mind can now calm down for the night. I am actually extremely fatigued. My face feels heavy--not that I could sleep yet if I tried. But I have obviously had a lot on my mind. I've just been suppressing it by keeping busy, I guess.
Thanks for reading. Thanks for caring.
