#life with mcas
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Ongoing MCAS recovery update:
Took a bite out of a gluten free chocolate cupcake and didn’t die 👍
#chronic health tag#mcas#life with spontaneous anaphylaxis#haven’t had real chocolate in 6 years#it won’t be a regular thing because it’s basically a histamine bomb#but eeeey mast cell stability is improving#6 years ago it would have closed my throat
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Slowly realizing that you may not be able to work anymore if you actually want to treat some of your disabilities feels like you’re being crushed like a hydraulic press. I’ve worked so hard, and I’m afraid that it was for nothing. So if you’re struggling with the same thing, I’m proud of you for all that you’ve done.
#disabilties#dissociative identity disorder#did osdd#did system#ehlers danlos life#ehlers danlos zebra#ehlers danlos problems#ehlers danlos awareness#hypermobile ehlers danlos#potsawareness#pots#mcas#the terrible trio#invisible illness#invisable disability#ugh why
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#kirby#daily kirby#my art#digital#hal laboratory#nintendo#I don't think I mentioned at the time because it was in the middle of kirb2k#but I had an appointment with a hematologist last week#they confirmed the culprit behind my chronic illness is definitely my mast cells#but I need to get a bone marrow biopsy next month to find out#if it's actually not-technically-autoimmune (mcas)#or if it's actually not-technically-cancer (mastocytosis)#which is actually good news cuz 1 someone finally confirmed my nearly 6 year old hypothesis instead of just agreeing (or disagreeing)#and 2 if it *is* mastocytosis they're gonna start medicating me A Lot more aggressively :)#which I need! I've been sick for right about 8 years now but it's gotten rapidly worse in the past 1-1.5 years#so clearly I'm badly under-medicated#(since I've been on all the same meds for 2 years except for my own emergency intervention.)#(I mean technically I've been chronically ill my whole life it just wasn't disabling until early 2016)#anyway I'm so tired I feel like a ragdoll half the time! sure hope I get adequate medication in a couple months!
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I remember saying phrases like:
"I'm getting worse"
"I'm declining and that's not typical of my diagnosis"
"I'm in more pain"
"I'm more exhausted"
"I'm not getting any better"
"this medication isn't helping"
"I'm struggling with my balance & coordination"
"I get weakness in my limbs"
"I now need help for daily tasks"
"my lymph nodes are swollen"
"I'm asking for help and noone is doing anything"
"can I please have an MRI or more tests done"
But they didn't listen. They either didn't think it was enough to warrant looking at, they didn't care, saw me as a hypochondriac, whatever it was I don't fucking care. They didn't listen.
And now my brain is fucked. FUCKED.
Lesions aplenty. I've started to notice the decline coming faster, my short term memory is gone (past 3 years), it will take me 5 to 10 tries to remember a word and even then I might have to describe it instead, because I can't remember the word, I'm reading family members names like I don't know who the hell they are, I'm more exhausted than ever before, physically and mentally, the head pain is constant, either low level or at it's max, it's always there, my eyes hurt, to touch to blink, to exist, my hairs falling out, I have all sorts of lumps and bumps in my skin attributed to MCAS, it's simply non stop.
I have cried, begged, screamed, persistently asked for help, been extra extra extra polite thinking I'd get somewhere with that, I've consistently told them the (God's) honest truth, and been turned away, diminished, manipulated into believing it's something else like anxiety, that I'm just a headcase.
It's as if when I ask for help, they think it's just for that day, as if im only experiencing those symptoms, when I dare to complain about them, to them.
We're led to believe they can help. They can, but they'll decide if, when, how, why. We're told they can help us. They can, but they don't listen and think it's an exaggeration.
I remember when I asked for help. The doctors face. The words of denial I received. The disdainful look, like I was making it up. The blame they put on me, for experiencing the symptoms I still am.
I remember when I asked for help, now look at me.
#tw medical#text post#tw doctors#chronic life#chronic pain#chronic illness#chronically ill#chronic fatigue#spoonie problems#chronic migraine#brain pain#migraine#mcas#do you get it now doc
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Welp. Doctor doesn’t want to use any of the mast cell stabilizing meds because of mood side effects (?) and there’s no where to go for a skin prick tests or anything further because I live in a rural shithole so that’s that.
Allergic reactions to everything and overdosing on antihistamines forever it seems. Gonna get married to the Hat Man and his million spider babies.
#rip my body#MCAS#allergies#histamines#doctors#tw: doctors#tw: medication#tw: cursing#personal#batwynn talks#black list last tag to never see me crying over my stupid life again lol
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How does one go about getting tested for MCAS...
#still trying to see a geneticist about EDS#and now because of long covid conversations talking about MCAS im realizing that may be a relevant problem to me as well#from BEFORE I got COVID#ive had idiopathic anaphylaxis episodes in the past but its been a few years since i had one#so idk if that rules that out#but i do have seemingly ever-changing food allergies/reactions too#like i went a whole year without eating red meat because everytime i ate it i had food poisoning symptoms after for a day or so#and have had constant gastro problems with seemingly random triggers since i was a teenager#also year round allergies#to what? idk#but i live my life sniffling with my ears and throat and skin itching all the time#and heat intolerance#and being seemingly allergic to my own sweat#idk it feels like im looking for reasons for it to be that because imposter syndrome but also with the pots dx#and then my rheum sending me for genetic testing for EDS cuz my labs show i have an autoimmune disease but no positive for anything specific#has me side eyeing in the direction of MCAS because i know how those issues all love to show up in a three for one bundle#ig ill wait and see how the genetic testing goes#cuz idk where to even begin for possible MCAS#and now having long covid too i feel like anything possibly related to that will get shrugged off#because doctors HATE long covid and things that are possibly related to long covid
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still can’t believe I watched 8 seasons of house md and 4 episodes before the end I figured out the cause of my own rare health disorder that 10+ doctors over 4 years weren’t able to figure out.
#house md#i ordered a bunch of new meds heres to hoping everything gets better!#would love to be able to idk remember things and be smart again.#biggest read of my life: people with this disorder are often tall in stature with long arms and legs#wtf how'd they know#not to mention the laundry list of other symptoms i absolutely have that they hit me with#mthfr#mcas#dysautonomia#i gotta order genetic testing too...#chronic illness
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shout-out to anyone with a preventable disability. shout-out to the frustration and the pain and the grief and the rage. if your disability was caused by ignorance or negligence or malice or chance i see you. if someone else had made a difference choice or if you could have made different choices i see you. i see your pain. you are no less entitled to feel that grief even if you could have done something. you shouldn’t be in pain even if you caused it. i forgive you, i see you. if someone else caused your disability i see you. you’re entitled to rage and grief and confusion. to everyone who sees people ignoring the same advice that could have prevented your own suffering, i see you. i see your sorrow, your indignation, your desperation. It’s frustrating when people don’t take your advice because they can’t see the looming outcome. Even when you’re right there.
#thinking ab this. so much lately but today especially#ppl dont understand that dying from covid is not their biggest concern#living the rest of your life carrying the weight of not just a disability and illness but preventable suffering#its heavy#i consider myself lucky not to know what caused my illnesses#and i feel for my friends who will live forever knowing that their disabilities were caused by someone's ignorance or malice or their own#like discovering that anti-vaxxers destroyed the vaccine that could have saved you your suffering#i cant imagine it#its awful having people ignore your advice when you KNOW the pain coming for them#or when you want to say dont be like me but you know you'll be ignored#covid-19#covid#for the record if you have long covid the disability community is here for u#mcas#hpv#ebv#mono#copd#tfios#bc tbh thats when i started thinking about this#like taking care of yourself out of respect for people who either wish they had or had no choice#sorta like the least you can do is prevent for yourself the suffering they cant esca[e for themselves#long covid#preventable disability#disability#ableism#accidental injury#preventable suffering should be prevented#lift with your knees#im fucking telling you.
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tw: content under a cut for talking about calorie counting (in a positive way), restrictive medical diets, and MCAS 'remission.'
So it's been 5 months since I last saw the GI doctor who took me seriously regarding my mast cell dysfunction, and not only have I gained a LOT of foods back into my diet under his care without experiencing idiopathic anaphylaxis, but I've also managed to eat 2000 calories almost every day for the last 5 months.
Prior to his care, since 2020, I had been mostly surviving on a liquid diet with the odd bit of solid carbs and protein when I could handle it.
Which was better than the 2 things I could digest safely prior to 2019, which were oatmeal and filtered tap water toward the end when I was dying. But even after I recovered from that, any time I went over 700 calories a day in solid food, I'd be writhing in pain.
I still have days when the pain hits, and all I can manage is liquids, but those days are so much less, and thanks to being able to eat more foods, I can at least liquidate more nutrients to make sure I'm getting what I need.
Things will never be 100% healed. That's not the nature of this kind of immune disease. But they're better. I'm better. I'm still so scared to say any of this is in remission because MCAS is wildly unpredictable. But I'm so much better than I was.
And I'm going to go happy-cry and eat a gluten-free cupcake about it.
#chronic health tag#MCAS#life with allergies#restrictive medical diet#mast cell activation syndrome#illness remission
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Thanks, immune system, but I really didn't need the reminder of how much I dislike anaphylaxis.
Can I stop being allergic to my narcolepsy meds now?
Brought to you by MCAS, the bane of my existence
#about me#medical stuff#anaphylaxis#MCAS#mast cell activation syndrome#Can I fire my immune system please?#narcolepsy#I am so tired of being allergic to medications#and inactive ingredients in medications in particular#I am tired of medication trial and error#aka playing russian roulette with my body#I am tired of being allergic to meds that would otherwise dramatically improve my life#I am tired of my life as a game of medical whack-a-mole#a med solves one problem but causes several others#I should not have to choose between sleep breathing cataplexy or a semi-functional cardiovascular system!#Why is existence always set to “hard” mode?#What's it like to just have a body that works?#that's not just constantly fighting you and all your plans and dreams?#it sounds so nice#anyway back to trying to remind my lungs how breathing works#good times (*sarcasm*)
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I just bought myself a manga about the artist going through severe illness and I found it comforting to read someone else's experience, so I thought maybe I would share a little about my experience with MCAS again. so here's all the pills I take!
cromolyn. 2 ampules mixed with water 4x/day (although I'm often out of bed for 12 hours or less and have trouble keeping track of time, so often it's 3x instead). mast cell stabilizer.
multivitamin. I only took this for a week so far and stopped to gather data. (my paranoia was getting bad, which often means I'm reacting to a med. this is a cheap one with many fillers.) meant to make up for difficulty accessing food and possible malabsorption.
fludrocortisone. 2 pills a day. for POTS.
atenolol. 1 per day. also for POTS.
montelukast. 1 per day. technically for asthma, but works by blocking one of the signals the mast cells send.
loratadine (aka claritin). 1 pill 2x/day, which we had to fight the insurance about after a while. antihistamine, meant to prevent anaphylaxis by blocking a different mast cell signal.
aspirin. 2 pills 2x/day. to reduce inflammation and control chronic pain.
whichever oral hormonal birth control my insurance will give me (it varies). 1 per day. menstruation makes my MCAS flare and I still have incomplete cessation even after an ablation, so I keep taking it even when not putting myself at risk of pregnancy.
dye-free diphenhydramine (aka benadryl). another antihistamine, taken when my MCAS flares to reduce or completely end the symptoms. (the pink dye in the regular formulation is actually a very common trigger.)
low-dose prednisone. steroid kept on hand for unavoidably high-demand occasions (like moving across the country) or unshakable prolonged flares (like, a week).
that's 8 pills in the morning, 3-4 at night, 8 ampules in the day, and 2 different emergency meds. plus I try to drink a gatorlyte every day (also good for POTS and certain mineral shortages) and try to avoid triggers (including heat, stress, and overexertion -n- )
3 and 4 were the first meds that ever made me feel any better, before we'd figured out it was MCAS. (likely with secondary POTS/EDS.) 6 and 7 are the first line treatment for MCAS, they're the first medications I actually took *for* it. they are often used in combination with famotidine (aka pepcid) but that made my paranoia super bad so I stopped taking that one.
this was my regimen established before I got covid last july, which made my MCAS much worse, which also made it impossible to get a new doc post-move since I can't physically get to an appt. so this is likely to change once I have medical care again. being sick is a lot of work!
#kirby#daily kirby#my art#digital#hal laboratory#nintendo#chronic illness#mcas#tmi#long post#ask to tag#(the manga was 'I'm a terminal cancer patient but I'm fine' btw)#(I don't have cancer as far as we know! and my illness wouldn't be qualified as terminal!)#(it's a chronic illness that's gotten pretty severe and has the potential to be fatal tho.)#(thebibliosphere has mcas too and she spent much of 2019 at death's door before she finally got knowledgeable care just in time.)#(at least I think it was 2019. I can't remember for sure.)#(anyway 'terminal' is a squishy and suspect category - even the mangaka says in the afterword she's stopped using it)#(cuz at time of publication she'd gone into remission! very exciting for her :> )#(she did unfortunately pass away a couple months ago but. such is life.)#(it can still be a nice book ending even if it didn't last.)#(also yes. my christmas tree is still up in february. I've Been Very Ill.)#(I've gotten all the ornaments off (over the course of a week) and I just have to take off the colored lights and disassemble it.)#(I've been using it for ambient light in the living room because I was really photosensitive for a few months.)#(it's not as bad now but I still prefer diffuse light for sure.)#favorites
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OH SHIT HAPPY DYSAUTONOMIA MONTH!!! well, not HAPPY per se since it is just in time for the october slide but IT IS DYSAUTONOMIA MONTH AND ONCE I FINISH MY SCHOOLWORK I WANT TO MAKE AN INFORMATIVE POST ABOUT IT!!!
#i don't talk about it TOOOO much here but i am very passionate about disability advocacy and chronic illness education#i have pots/eds/mcas/bunch of other shit#and it affects every waking hour of my life#and it's so so so important to me to be open about#i'm adding another thing to my plate which i do not need to be doing but i WANT TO#this is so important to me
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I think the take-away from my near death experience is that I am simply unkillable
#its either laugh or cry and i choose laugh#i have become extremely cautious since then#in case this post is concerning#i honestly never felt i was in that much danger#i wasnt able to check my skin at the time even though i knew i had hives#only once i had been admitted and set up in the ER did it start to feel severe#esp after i saw my vitals#and looking at it from the ERs point of view#patient walks in after driving three hours in anaphylaxis for two of them#epipen a foot away and unused#HR 144 BP 150/100 and PMH of uncontrolled severe asthma#and also reporting difficulty swallowing and asthma#yeah okay i get it#there was a moment i decided between going into my home after a long drive or restarting the car and driving five min to the ER#thats a crossroads#i had no clue i had a life threatening allergy disorder#i thought i had a nearly gone childhood peanut allergy#good call i suppose#i did get scolded for the epipen tho#heres the mystery to me tho: where did the hypertension come from?#im normally hypotensive#bp technique wasnt ideal but not enough to cause that kind of distortion#anaphylactic shock is supposed to cause hypotension#maybe one of the many medications im on#or a unique feature of mcas#ramble over#although I'll never be done treating my medical records like an interesting puzzle#disability#chronic illness#salt baby talks
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it took me an embarrassing amount of time to put together what increase in stomach problems + HORRIBLE PAINFUL acid reflux + face feeling/looking flushed + TONS of migraines probably signifies
#(MCAS flareup. it's wild b/c it normally just. does not really flare up. it's just consistent.)#life#chronic illness#disability
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