#do they get autoimmune diseases
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The real question is which of my problems do I give romana
#stuck between migraine and food hates her#well more her internal organs hate her and certain foods make that worse#she was malnourished for twenty years that shit wrecks your digestive system you know#do you think there’s a time lord equivalent of celiac#do they get autoimmune diseases#can I poison romana with time lord gluten#asking the real important questions here obviously#romana#j rambles
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ok my OTHER reflection:
on the one hand its really frustrating to see the posts about docs and healthcare in general on here be so narrow-minded. bad experiences with certain providers have lead to a huge spread of misinformation and mistrust with the whole system. which can and HAS lead to people avoiding 'evil' doctors for perfectly treatable illnesses and dying from them (the vaccine bullshit, anyone?)
but on the other hand. it is TERRIFYING how some of these docs practice medicine. at times i think 'are you just burned out and don't give a shit or are you straight up just stupid?' and i work in critical care. where quite literally every case is life or death. even in the academic sector where there is supposedly a standard of excellence, some doctors i would not let touch my loved ones with a ten foot pole.
and that sucks. i know this is the no nuance piss on the poor webbed site but 'the medical system and people that work for it are fallible and aspects of it are morally questionable at best/unethical at worst' AND 'the field of medicine exists to help people first and foremost and mistrusting/avoiding it can be detrimental in the long run' can and DO co-exist
#also. folks i hate to tell you but 'doctors get big pharma kickbacks and they can cure you but just choose not to to get more money'#is a very tempting conspiracy theory. but it is SO UNTRUE.#hey listen. if someone is telling you they can 'cure' your disease magically if you just take x vitamin THEY ARE LYING#even miraculous cures like bone marrow transplants for autoimmune disease and CAR-T therapy#have such severe side-effects that they quite literally kill you#i can't tell you how many times i've taken care of people who#had their cancer 'cured' but the treatment ruined their kidneys/heart/lungs#or fucked their immune system so bad that a common bacteria could completely take them out#anyone selling you miracles is L Y I N G#i understand that a lot of this anger is around disability and chronic illness and psych and i get that. intimately.#its 100% accurate to say that a patient who researched independently about ehlers-danlos or POTS knows more about it than i do.#and its hard to see the profession as 'people who sincerely ARE trying to help' when you actively work with people who fucking suck#and you think like 'you went to school. you went through all this training. you (presumably) passed boards'#we should have at least around the same level of knowledge#but that is often not the case#still#making large scale statements about an entire profession (especially when its supposed to be a civic service) is just... not good#my two cents rec for this is:#if you think you have something rare or unusual try to find a doc that specialized in this i.e. go to an academic center.#trainees are less set in their ways and can think outside the box PLUS if there are new/innovative treatments they would have them#if you need pretty much ANY surgery. private is the way to go#you want surgeons with high volume and experience#surgical techniques do not change on the dime. most havent changed in 50+ years. a lot of other medicine DOES#(this of course does not apply to specialized surgeries like whipple or PTE or schwannoma resection - go to academics for that)#if its REALLY rare whether medical or surgical your GP will not know what to do with you#academic centers are referral centers. they are more likely to have the right tools to diagnose/treat#where was i going with this?#oh yeah i had an odd interaction with an ED doc admitting to me last night that was NOT practicing within current standard of care#and was just so casual and assured i started to doubt MYself. like. am I the crazy one?!?!#like i'm young i dont know everything SURE
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Emergency GI appointment in 7ish hours. Stomach pain woke me up at midnight thirty and I can't get back to sleep. Trying to sip more Pedialyte. Fuckass situation got me feeling like
#DO NOT I REPEAT DO NOT GET NOROVIRUS IF YOU HAVE INFLAMMATORY AUTOIMMUNE GASTROINTESTINAL DISEASE#I HAVE NOT LEFT THE TORMENT NEXUS FOR 84 YEARS DESPITE BEING NOMINALLY OVER THE VIRUS
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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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chronic illness is so funny because everyone around you is shitting screaming throwing up wanting to kill themselves from the despair of it all but you're literally just chilling
#:)#my parents have trapped themselves in a psychological torment dimension where i have a soap opera esque terminal illness#meanwhile outside of just being sleepy 24/7 there is nothing symptomatically wrong with me#kinda stresses me out despite the fact that i'm basically the healthiest you could possibly be with this condition#like the only reason i'm doing nothing rn is because my 1 million hospital appointments make it impossible to live my life#it's very funny because to hear them talk i'm withering away and all my meds are poisoning me#even though genuinely i wouldn't even know my kidneys were fucked if i hadn't had that hypertensive migraine#anyway bluhhh just cranky at how everyone around me acts like a constant funeral procession#gonna be absolutely hilarious (unbearable) when i get biopsy 2 done and i get my probable autoimmune disease diagnosis#everything is so fun all the time yippee ^_^
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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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The exact anniversary of it went past without me noticing, but this month marks five years since I last had to go to an ER or urgent care!!! :D
Still don't know what exactly is wrong with me health-wise, but I am doing so much better than I used to be it's a little ridiculous. I was in an urgent care or ER every summer for severe allergic reactions for years, and now I hit that late June/early July mark and don't even notice
#the person behind the yarn#hospital mention#okay this isn't quiiiite true#I did have to go to an urgent care last year or the year before#but that was not for allergies or severe dehydration#that was because I had to get my potassium levels checked and my primary care doctor didn't have the ability to do bloodwork on the weekend#but five years!! oh my gosh five years!!#I had a doctor visit today that basically boiled down to 'something is wrong with you. don't know what though. definitely not RA'#which on the one hand is good news! I do not have an autoimmune disease that will get worse over time!#but on the other hand means I'm back at square one. again.#but oh my gosh FIVE YEARS of no hospital#sometimes it feels like I am making no progress towards a diagnosis#but realizations like this really help. five years! five years. I am getting better#I might have moments where I don't feel well and downward slumps but I have to remember#I am doing so much better healthwise than I was in 2019 even on my worst days now
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No amount of traumatic events had made me as suicidal as my chronic pain.
#most days I’m okay with it but sometimes I just lay in bed in a fetal postiion sobbing bc in reality the pain is unbearable but I have to#mask it for other ppl bc ppl are always gonna be uncomfortable with you for being jn pain#I hate that I have to sacrifice ky own comfort for others#I hate this body#it’s weak#I have been sick all my childhood had multiple autoimmune reactions and an extremley rare autoimmune disease that has very few cases in my#country#also have chronic pain since getting r*ped#and it’s not soemthing I wanna explain to everyone#like yeha sorry fifteen year old me was sveerly traumatised and also left with an even more sick body#and I love doing art but anytime I make smth I have to lay in bed for hours in a fetal postion from being in sm pain
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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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warning this is an "i've lost my temper" post
people leaving comments on my vaccine post about how they """""can't""""" get vaccines because of needle phobias like what kind of ridiculous backwards-ass mental-gymnastics dumb fucking able-bodied nonsense are you on. you shortsighted twat. you circlejerking fucking asshole. you know what'll make you have to contend with needles???? getting an IV in the hospital because you came down with COVID. and now every single time you move you feel the straw wiggle uncomfortably inside your veins and you can't get it out ever you're trapped helpless on your back forever getting stuck by needles CONSTANTLY.
so. unless you're ready to lay at home and die while refusing all medical care, which would be good because at least you'd be putting your money where your fucking mouth is, i think you Do In Fact want to take the shot. you Fucking Moron??
#i too have a needle phobia and my autoimmune disease doesn't actually fucking care that i do#i still need to get stuck for blood draws and IVs and vaccines like errybody else#so i can promise you. YOU'LL LIKE THE VACCINE A WHOLE LOT FUCKING MORE THAN HAVING A CHRONIC ILLNESS THAT PUTS U IN THE HOSPITAL ALL THE#TIME!!! JAZZ HANDS LOVE AND LIGHT YAAAAY#had an even more vitriolic version of this post but this one's fine.#i'm through with sympathy for able-bodied people using autism as an excuse for why they can't do anything.#like yeah i'm being a judgmental cunt. but also you're the one who chose to say some dumb fucking shit on my damn post#YOU CAN GET THE VACCINE. you just dont want to. dont EVER fucking say you 'cant' get a vaccine unless you're actually too sick to do so#NUMBER ONE WAY TO PISS OFF SOMEONE WITH AN IMMUNOCOMPROMISING DANGEROUS DISEASE. JESUS CHRIIIIST#autoimmune tag#negative#coronavirus
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vent moment but my health is a bit worse than i let on, which is weird ik since it seems like complain about it all the time here, and apparently i also look sick, because two separate people in their 40s or 50s asked me, 24, if i needed their seat on the bus. kind of them. but humiliating nonetheless.
#medical stuff cw#i sat on the steps instead of taking their seat#vent cw#i have to take five different pills a day excluding birth control which i also take for health reasons but okay#i have to thank italy for its healthcare system because at least i dont have to pay a fuckton for all that stuff. except birthcontrol.#as i may have mentioned they found quite a bit of blood in my piss so im getting tested for ✨️cancer✨️#also because i've been having health issues which might be rated#my blood work is all off but i didnt get tested for tumoral cells specifically because i may have 'just' an autoimmune condition#so im on heavy duty antibiotics too now bc i also developed antibiotic resistance last year. anyway.#i need to take those and then they'll test my peepee again but this time they will also test explicitly for tumoral cells#because something is off and my previous blood work didnt point out what exactly#terrible anemia and other slightly-off numbers that however shouldnt be off considering my lifestyle#i eat almost everything. drink plenty of water. exercise. barely smoke. not even drinking anymore. i'm not too fat nor too skinny.#so. some of the numbers that are off dont really have a reason to be off which is why they are testing my blood and piss for cancer#but like. in 3 weeks because i have to take antibiotics and iron meds (not supplements. meds.) first#so my mind's trying to convince itself that i dont have a tumor. but what if i do? i know i dont. but not knowing makes me go insane#also i have to get tested for heart disease because that motherfucker is not working properly. doesnt pump enough blood to my brain.#i took an ekg and it came back pretty normal except for tachycardia#now i have to go get an holter ekg - but was told to wait until uni starts again bc i need that exam to be done when i have a daily routine#so basically they slap electrodes and shit on me for 24 hrs while i go do my shit around the city and then see how my heart behaved#because i cant stand without struggling to breathe and sometimes it happens when in laying down to.#sometimes i cant fall asleep because i cant breathe#at first the doc thought it might be a reflux issue but not. all good on that front.#so. we'll see. and i mean. i KNOW it's not cancer. like. i'd be dead by now bc i've been having these symptoms for five months#however. i dont know if it's not an autoimmune disease. and if it is? what am i gonna do?
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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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#minor health rant ok i'm sorry it's just. i've been debilitatingly ill on and off for this entire last year and it hasn't once let up#and i've had to deal with uni and grades and assignments and adjusting to living on my own for the first time#all while having an autoimmune disease that went undiagnosed for the first six months i was at uni.#and i've only just started to process how difficult this last year really was bc when i was in the thick of it#i just told myself i had to keep going. i had to get through it. and i DID i got through this entire year#and i did my exams and my labs and my assignments and i joined a sports club and a choir#and i balanced all of these things whilst i was actively iron deficient and malnourished and recovering from pneumonia#not to mention the literal Chronic Fatigue and Malnutrition Disease i didn't even know i HAD#AND YET. AND. YET. my family has turned this into a joke#i'm not even allowed to be that upset about it. they still expect great things from me bc that is who i am that is who i have ALWAYS been#and i don't know who i am anymore!! i don't know what i can do!! i spent ten months so sick i could barely function and i still DID IT.#it's no good telling me they're proud of how resilient i am!!! i don't want to have to be resilient i want to be WELL#i don't want to be told how strong i am i want the simple comfort of being allowed to REST#i don't know how many more times i have to remind them that i have an actual CHRONIC INCURABLE DISEASE before they listen to me#ANYWAY. complaining over lolol i'm sure i'll be fine!! haha#it's not like i'm ever NOT fine lmaoo#ok everyone back to scheduled posting. realness over !!#🙏🙏
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me when i lowkey could have an autoimmune disorder
#it's soooo over#showed my dr a picture of the last time my face broke out in the rash i get#and she said 'have you ever been checked for autoimmune diseases?'#ive been doing my own research too... this is so crazy
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you know, it's an interesting feeling to experience sudden and new joint pain that is impacting my ability to, among other things, hold a pen for an extended period of time and the only thing that my (now former) doctor has done is repeatedly test me for lupus (it's not lupus. it's still not lupus.) and tell me he was going to prescribe me claritin for it and then not actually put in the prescription.
#brother there are 2394857349853458 different autoimmune diseases you can't just keep re-testing for the same one i clearly don't have#it was very promising at my first appointment! he was like 'after this bloodwork i'll send you to an allergist and/or a rheumatologist'#he ultimately just decided that it was something an over the counter antihistamine could deal with as if that wasn't the first thing i trie#hey in his defense he did begrudgingly sign off on testing for celiac after i asked#and after letting me know repeatedly and in no uncertain terms that i'm an idiot for asking#he's like ummm sweaty that is a gut issue#1) those aren't the only symptoms and 2) you didn't even ask me if i HAD gut issues (i do)#please let it be celiac it would be soooo funny timmy turner praying to god and to jesus dot jpeg#'i'm still having issues with my ears' 'did you go back to the ENT' 'yes' 'did she have any recommendations' 'no'#'did you go back to the ENT again?' brother why would i go back to the ENT to get a recommendation that she already didn't have#health
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I hope the rest of the week will be better for you.
thank you! that’s very kind :)
#i am doing a little better!#my best friend said he can take care of my cat!#I don’t have the money to bring my cat here (I don’t live in this city and it costs a lot to come here and bring my cat w me)#but I’ll bring him when I’m able to pay for it#which means i don’t have to give my baby away!#im still struggling w the vet bill thing but I’ll try to find a way#also I’m changing my medication for my autoimmune disease!#im getting off the daily pills and switching to a monthly shot!!!#thank u for caring babes. that really is very kind :)#mars talks
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