#because of an autoimmune thing
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my mom was saying that I'm pretty unlucky when it comes to cat health, but I was saying that a lot of folk have issues like mine, it's just that they don't deal with them and then the cat dies.
she said "that's not true at all," and I had to list how many cats my aunt and uncle have burnt through in the same time I've had Pangur and Grim. and then I talked about an old friend who would never even name her kittens, because they always died within the first year. and of friends who've watched their cats deteriorate without going to the vet, while saying "there's nothing I can do." in mainstream culture, cat death is normal and invisible. it's just that a lot of time the cat dies outside of the house (whether through illness, accident, or predation) so people get to maintain deniability.
#pangur easily could have died 10 years ago when she first got pancreatitis#and Grim..... I dunno. she needed her teeth out pretty young#because of an autoimmune thing#so they could've rotted in her mouth and led to some sort of massive infection without treatment#I just keep saying “NO” >:( whenever they try to die
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last time i got an irl writing critique there was one moment of pretty mild body horror and the universal reaction was "oh i'm nauseous. well done" so now i'm writing my next chapters like. gotta turn that up to one thousand :) sorry devin.
#the intimacy of someone perching on your legs and carefully unraveling strands of parasitic bullshit from your actual open spine w tweezers#best thing i've done is give devin healing magic that lets them sustain regular massive organ damage except make things heal wrong.#your skin is scarred and warped all over because the holes clot immediately no matter the size and the new flesh is never quite right#the torn muscles knit new fibers together to bridge the gaps with no regard for their usual shape#god help you if you need that muscle to stretch or flex or bend properly. you either do months of PT to regain function#or you rip the limb apart again and keep it stretched while it heals itself#nearly every day your magic fragments another nerve and the pathways never quite connect right#numbness in the fingers difficulty closing the fists a constant unbalanced borderline-lurch in the gait#paralysis from spinal damage is only a temporary possibility but the pain of a miswired CNS makes paralysis preferable#your blood is always sort of septic but also always sort of cleaning itself. if it bleaches bits that are supposed to be there oh well!#original fiction#devin#horror#body horror#autoimmune tag
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Hello! If this is intrusive please feel free to ignore completely.
I was just wondering if you feel comfortable sharing what type of sleep disorder you have, since the way you described your dreams in those tags is like, the exact way I’ve always dreamed (oh my god FUCK those false awakenings where you’re aware you’re trying to wake up and failing again and again)
Regardless of whether or not you answer, wishing you a very nice day!
I actually don't know specifically bc I haven't had a full sleep study but it's either narcolepsy or idiopathic hypersomnia. and to be honest I'm not entirely clear on why those are two different diagnoses to begin with lol
#sick#this is incredibly incredibly commonly comorbid with things like dysautonomia and EDS#because often it is the result of an autoimmune problem! narcolepsy is an autoimmune condition.
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interesting to me how when i turned 19 i was kinda terrified bc i was like “oh shit this is my last year as a teenager….. i won’t be a teenager after that… i wanted to be a teenager for all of my childhood and now that part’s almost Over. aaaaugh” and now approx. 9 months later i cannot fucking WAIT to stop being a teenager oh my god i am ready to move on. 20s please i would like to be in them. i am done being 19 thank you !!!
#marzi speaks#it’s . probably bc of the vasculitis thing#which like. while it is a traumatic thing that i need to work through and plan on going to therapy about#it also put a LOT of things into perspective for me#and like actually i do not think i am afraid of growing up anymore !#i mean i still have like. the imposter syndrome and the fear of getting overwhelmed and falling behind#that’s not gonna go away overnight that’s been there for as long as i can remember#BUT!! i know deep down that i can figure it out now.#bc i figured out a lot. i figured out how to gauge my physical well being#i figured out how to be someone who can regularly make phone calls without crying#i figured out pharmacies. and i’m figuring out how insurance works#and appointments and withdrawing from school and reapplying to school#and all of the lifestyle changes that come with having an autoimmune disease#i’m learning self advocacy. i’m learning how to respond when people treat me poorly (always accidentally so far)#yeah getting my license has been hard and slow just bc i have all the anxiety shit about it. but i AM putting that effort in#i dunno it’s just. adult responsibilities are horrifying and the prospect of existing independently in our current society#is horrifying. and i think i’ll always be scared.#but i used to think i might not be able to handle it. that i would fall apart#i know now that i won’t. i will find a way to move forward and be happy. because that’s what i’ve always done#if i can take the scariest couple of months in stride the way that i have. then i think i can handle it#anyways. 19 was eventful enough can i be 20 now. i think being 20 would be good for me#still a Weird thing to think about. two whole decades. but like i can do it methinks
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I think my body hates me
#health problems suck but why is my body taking it one step further by having an autoimmune disease? why?#why. despite treating it well in the first place. am I going to lose one of my teeth because the root randomly started to get inflamed?#why do I have to have been born with a specific gender? why can't I be genderless?#these are all questions science can't answer#I hate it here#my body hates me fr#me complaining#not art#text#I also feel like I might have depression and I'm probably some flavor of neurodivergent but I haven't confirmed either with a professional#so I'm suffering in silence#kinda#depression is more of a mind thing I know but my mind is literally physically in my body. I am my mind
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Once again no crafts to update, but here’s those fish I drew yesterday!
#the person behind the yarn#fish#sometimes I draw a new thing and it feels like I’ve unlocked a new skill#like I’ll get a pop up that says unlocked: you can now draw billowing and spots. congratulations!#or something? idk I don’t play many video games so idk how the achievements are worded lol#I am on new meds for my Symptoms Disease and they are helping a lot but there’s always an adjustment period#because when my body starts functioning better than usual my executive function kinda spins out for a while?#it’s getting better! but crafting has been slow#I also got some blood test results back! I test positive for autoimmune antibodies#which is one of the first quantitative blood test results I’ve had EVER in over a decade#I’m trying not to get too excited before I talk to a doc#but it’s actually four different blood test results that are abnormal this time and all four point toward autoimmune#…plus several more that point to me being a little bit anemic
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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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there’s so much i wanna do this week/month/etc but i’m just too sick, i have no energy, i can’t sleep, i’m constantly nauseous and headachey and on the verge of a migraine, i’m stressed and irritable and impatient and panicky…….how tf did i survive nearly 5 years of high school untreated if i can’t even manage this when i don’t have any major obligations rn
#at least i finally got my meds so hopefully i feel a little better soon#although i’m now on 20 pills per day which is Just Great#whenever i’m in remission it’s nice to just. forget sometimes that this can happen at any time#kinda wish i had the typical kinda chronic illness that people talk about with ‘flares’#or at least triggers that i can plan around#the other times have all had an easily identifiable stressor tho tbf. idk what caused this one#the first time was whooping cough and the next few were all very major life stressors like my cat dying right after i started uni#and i think also towards the end of my honours thesis?#but this…….there’s no major stress right now. nothing wildly beyond normal#i’m a little concerned about my joints tho. they’ve been so much worse than normal the last few months#so i’m kinda worried i’m developing rheumatoid arthritis (also an autoimmune disease and it runs in the family specifically)#so if that’s happening then it could set my thyroid off? probably should get to the doctor at some point#obv i’m seeing my endo for thyroid stuff. but i should see my gp and get her to run all the autoimmune blood tests again#i’ve done that before but it’s been a few years and my ankles and knees are so painful i can’t even walk properly a lot of the time#BUT I JUST WANNA DO THINGS I ENJOY AND I CANT AND I WILL CONTINUE TO COMPLAIN ABOUT IT#‘oh you’re so lucky you don’t have as many obligations because you’re chronically ill’ ha ha ha please swap lives with me immediately#personal#but seriously. i wasn’t diagnosed until i was nearly 17 and we can trace it back to whooping cough when i was 12#so it was the last half of year 6 and then all of years 7-10 and the start of year 11 of just being. uh. ‘very lazy and complaining a lot’#and TEACHERS joking about me and my sister (who was dealing with an arguably more severe undiagnosed disease) missing so many classes#wow so funny pdhpe teacher who’s supposed to be teaching is about health#and the thing with being a mentally ill teenager is that hyperthyroidism can just look like a very severe anxiety disorder#so i didn’t go to the dr until i was too sick to go to school at all. and luckily had a good dr who did a blood test#i’m just rambling now because i can’t sleep and i don’t wanna lie here doing nothing#might go play pvz or something. that’s been keeping me entertained
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“your cholesterol looks wonderful” hell yeah I’m getting a good grade in bloodwork, something that is normal to want and possible to achieve
#the thing is that good bloodwork indicates that I've been managing things well#because a lot of times I've had bloodwork that's like 'girl are you okay'#my cholesterol is usually pretty good though I haven't had any issues there#my thyroid levels are good! my vitamin levels are no longer deficient!#I just need to decrease the amount of vitamin D I'm taking bc that's slightly elevated#my autoimmune shit isn't fucking me up as hard as it has and that's so nice
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We were raised on cocktails of Disney movies that brainwashed us into believing our lives were not complete without our white knight coming to save us from a miserable, cat‐filled future as a solitary childless hag. That we could never hope to be happy unless we were worthy enough to be chosen by one of them. So it makes sense that these women cling to disgusting, vile practically dickless excuses for human beings who don't even make them happy. It's the thickest smokescreen in the world, but once a woman chooses to or is forced to disperse it, she will spend the rest of her life trying to understand why she was willing to settle for so fucking little, and barely recognizing that past version of herself.
#personal#i GUARANTEE you none of these women are happy with their trump suckling men#women (childfree or not) tend to love like mothers do. unconditionally.#doesn't matter how miserable you make her#if you gained a woman's love and trust you will have to behave in truly heinous ways to get rid of her#and even then it might take a while#but men love only insofar as the arrangement benefits them. that's it.#start making trouble or disturbing his peace by advocating for your needs and youre gone#you are so utterly replaceable to a man don't you get it? so why are you treating him like there aren't billions more where he came from?#the smartest thing women can do is learn to love men like men love women.#only up to the point that they are providing consistent benefit to you#the second his actions don't match his words the second he backtracks on his promises#the INSTANT you catch him in even a white fucking lie#to the fucking curb#because you know the moment you represent the slightest inconvenience to him he will no longer “love” you#women need to remove their heads from their asses and realize the fleeting validation of a ring and wedding#isnt worth cohabitating with someone who can never love you with a TENTH of the depth and intensity you do him forever#buy yourself some cute jewellry and throw yourself a party done and done#saved you years of therapy and 3 autoimmune diseases#4b movement#patriarchy#toxic masculinity
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i have a sore throat and i swear to god if my annoying cousin has given me a cold and/or covid i am going to punch something
#unmasked socialising is one thing when you chose it.#unmasked socialising when it was obligatory and you did not choose it is another thing#i am the only person in the extended family still routinely wearing masks#i have spent the entire christmas period unmasked around them which means basically#that i have been exposed to EVERYTHING THEY'VE BEEN EXPOSED TO AS NON-MASKERS#i hate this. why does nobody think my autoimmune conditions are worth being careful of#(and no i could not have worn a mask here because it's been constant food-based socialising)#personal
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another funny thing is how every single thing produced or written by a doctor on something that is not commonly diagnosed is like, come on, we're trying!!!! remember that we're trying!!! if a doctor doesn't have the information you need, it's not necessarily their fault, they're working with whta they have :(((( come oooonnnn, it's probably that doctor's birthday, he's just a little doctor birthday boy. you're going to be mad at him on his birthday? wow. did you know every doctor was born on the same day so when you are mad at one you're mad on ALL of our birthdays? we're trying!!!! remember that we're trying!!!! we don't have the resources!!!! and we're not going to look for them <3
#i wished i lived in this fantasy world where the active resistance of doctors wasn't completely destroying my life#where it was just a matter of not knowing and not active hostility#it's one thing for a doctor to be like oh hm i don't know let me try looking into this or referring you to someone who might know#but 90% of doctors i've dealt with have been like lmao suffer and didn't try anything or refer me anywhere#and even if they DO that they are punished. my current psychiatrist(s) does so much and gets swatted down at every turn#and to be clear the last 10% here tried one (1) thing (basic metabolic workup) and then when it showed nothing were like#okay you are fine 🙏 bye#i do not have very much love for doctors and sorry to bitch about that all the time but as an offshoot of my last post#i cannot complain around my family because then it's like uwu 🥺 did you tell the doctor you have a dog. did you tell him you have a dog.#did you tell the doctor you have a dog this could be a dog allergy did you tell him that you--#shoutout to the doctor who was helpful and then decided that he was done and just going to prescribe claritin#and then didn't even bother to do that when i went by the pharmacy#not that it really matters i already did antihistamines but it was a good try <3#should we throw a party <3 should we invite the nurse that when i burst into tears said nothing and just walked out <3#he at least humored me and ordered some more testing but only after making it clear that i was stupid for asking and that he was humoring m#got some of the results back and surprise surprise it's very autoimmune#health
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wow it's been A While since i experienced Acute Sick Privilege, ie: the rare privilege where you're the kind of chronically ill that doctors Actually Do Take Very Seriously. anyway i just walked into my doctor's office & within 15 minutes i had prescriptions for antibiotics, multiple inhalers, and a heavier course of prednisone than i've ever been on in my Life.
#i SHOULD log out on all devices before i take the prednisone because it can do um. interesting things#to a person's impulse control and mental filter.#i'm unlikely to do that though bc i need tumblr if i'm gonna be in bed for another week#so please. please. Please God. be patient with whatever i end up posting over the next several days.#autoimmune tag#it turns out if you have a history of lung problems bronchitis pneumonia and twice-over COVID#plus multiple autoimmune diseases that impair your immune system#(good) doctors REALLLYYYYYYY do NOT say 'yeah just rest at home and you'll be fine.'#this is fascinating. i love to be. so sick.
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i have some real niche special interests, ones that i don’t even know what to call. like, i’m super into hearing???? how hearing works???? like how the brain and the ear work together to create your perception of sound???? like. what would you even call that
#currently watching a video series on audio illusions (which is what sparked this post)#i’m also super interested in a couple specific genetic and autoimmune disorders#it’s just really funny because i’ll like some things in a field but not others#anyways
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still insane to me how ppl pretend fatphobia is about health only to continue to be fatphobic when someone gains weight or even just looks somewhat fatter as a result of improving health
#marzi speaks#i knew it was a thing that happened but it didn’t click to me just how ingrained it is into ppl’s minds to shame ppl for their weight#until ppl started getting weird abt my steroid water retention#a common side effect of long term steroid use is something called moon face#where your face retains more water than usual and starts to look rounder/fatter#this happened to me! never too much and now that i’m on a lower dose it’s even less obvious#but it did for sure happen#people would see me for the first time since i got out of the hospital and go ‘oh! your face is rounder’#and i’d go ‘yeah it’s a steroid thing. no biggie ^_^’#and then they would respond with something along the lines of ‘don’t worry it’s not that bad’#or ‘oh don’t worry! you’re still cute!’#and i would look at them like ?????????? why is it something you assume i’m insecure about#why do you assume that i am ashamed of the fact that i am no longer literally fucking dying#and when i was getting that comment the most i was still medically underweight. i was recovering from malnourishment#i think if the rest of me got fatter too people would have actually started joking about how i’d ‘have to lose the weight’ or some shit#it actually made me feel crazy. what the fuck is anyone talking abt#i had kinda known ‘it’s a matter of health’ was bullshit but that cemented it in my mind#because my face rounding out was a result of me finding treatment for the autoimmune disease that nearly fucking killed me#and people still expected me to be ashamed of it. what the actual fuck
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You know. I'm really starting to understand why they guess lupus in every fucking episode bc every single time some weird medical thing pops up i look it up and the cause is always Always Fucking Lupus
#personal#teddy talks#seriously tho its ridiculous#i literally have Symptom Disease#the weirdest thing i figured out is actually fucking mental (which. psychosis is also a symptom bc why tf not?)#but ive had hearing problems since i was a kid. ive also worn glasses for a good decade or so. both of those are because of lupus#and its super commonly misdiagnosed just bc its so vast#it has nearly all the same symptoms as diabetes but no blood sugar problems#also the same symptoms as narcolepsy including seizure activity#and pcos#and schizophrenia#and fibromyalgia#and aids#literally name a big scary disease and ill bet $100 that lupus can present with the same symptoms#this time im mad bc sometimes i get this thing where the roof of my mouth hurts too much to eat. wanna guess why?#also as im typing this im getting the fucking shakes bc....you guessed it! lupus.#thats probably the most and least realistic part of the show#most bc its could literally cause any problem on the face of the fucking earth practically#least bc its never diagnosed like ever. i only have a half hand-wavy 'probably' bc my moms entire side of the family has it or similar#autoimmune stuff and i have the rashes on my face and hands#but like. i camt get treated bc i cant get diagnosed bc it can only be diagnosed by one particular test#thats fucking stupid expensive and comes bqck inconclusive over 70% of the time unless youre dying or over 45#dont quote me on that stat thats just what my gp said years ago#which i barely remember bc lupus fucks w your memory#also! also. they say theres all these diseases that 'mimic' lupus right like sjorgens and hashimotos and rheumatoid arthritis but like#you know what also can appear as secondary disorders (might i say symptoms) with lupus?? sjorgens and hashimotos and rheumatoid arthritis#every single disease that 'mimics' lupus can also be ACTUAL SYMPTOMS OF LUPUS#theyre not even comorbid at this point theyre straight up symptoms#even other diseases that arent lupus ARE STILL LUPUS#edit: the stat is actually that it reports a whopping 30% chance of a false positive. but its also much more conclusive after 35 y/o
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