#(cuz at time of publication she'd gone into remission! very exciting for her :> )
Explore tagged Tumblr posts
Text
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
80 notes
·
View notes