I want to share my experience as a disabled person, because I think it’s very easy to simply not notice our non-existance:
I don’t exist anymore. I’m a hermit. It’s been years since I’ve done anything in public. I go to the rheumatologist, I go to a lab to get blood tests, and once a year I get an x-ray to make sure I don’t have TB. I don’t do anything else. There’s about a two week period where being outside isn’t some unbearably high or low temperature that exacerbates my condition.
Please care about covid. Just, please. Do it for people like me if that helps you, but mostly do it for yourself. This virus can make you like me and it’s miserable (I was sick before Covid, but Covid is known to trigger autoimmune conditions which are the primary cause of my suffering).
Scariest part is the discovery and uncertainty of it all. "oh well if it’s scleroderma, you’re dead in 10 years. If it’s just scleroderma Ana, maybe it’s lupus. It could also be this weird ass thing that less than 1000 people in the world have. Well, I mean you have the marker, but it could also be lupus. Maybe MS. Are you still having dysphagia and have you choked on food lately? "
Excuse me while I gently sway back and forth in the corner over here.
And don’t get me wrong, I’m not a antivax person, like at all, I have 5 rona shots now. But if someone tries to suggest with 100% absolute certainty that either covid itself or the toll the vaccine took on me didn’t unlock an underlying autoimmune disorder, I’ll kick em. I’m not saying that the vaccine gave me an autoimmune issue. I’m saying it likely existed prior but was the catalyst.
I’m not in quite as bad shape but I also reacted badly to the vaccine. I get awful migraines after every shot/covid exposure lasting months and it’s become permanent since the last one. I quite literally have not had a single day free from migraines in 6 months and I’m completely intractable to every medication we’ve tried. like they’re talking about burning out various nerves in my face and neck to try and prevent them but it feels hopeless. I no longer get to have a social life and I’m struggling to keep a wfh job - I’m effectively bedridden all the time because of the side effects of migraines (dizziness, vertigo, muscle weakness, primarily), and I’ve been getting seizures for the past year.
I wish people would just do the bare minimum to protect people like us but I’ve mostly given up. just trying to get used to my new, extremely small world.
you mentioned burning nerves in your face but have you looked into botox for migraines? they inject in the back of your neck. Or maybe doctors already suggested this for you? I understand they only use it for very severe migraines.
The uncertainty is awful. It took me ten years to get diagnosed with anything. I had so many doctors that thought I was just seeking pain pills. I had to beg a primary care physician to refer me to a rheumatologist. The rheumatologist guessed what I had within 5 minutes. A few blood tests, X-rays, and an MRI later and I had a diagnosis. Ten years and then someone guesses it in 5 minutes. Autoimmune diseases are weird like that.
I’m also incredibly pro-vax, but those things knock me on my ass for days. Seems pretty common for people with autoimmune diseases.
My shit started about two months after having Covid. Longgg before I got vaccinated. I think some people think it’s the vaccine because problems don’t tend to start right away when you have covid. It takes a while.
I never tested positive for covid. I was sick once, but repeatedly tested negative across multiple brands of at home kits. My wife was sick a couple of weeks afterwards, and tested positive at the first sniffle.
Since the beginning of the pandemic, my biggest fear hasn’t been to catch the virus, but to spread it, especially to my immunocompromised relatives. You’d have to see when I tell that to people; they look at me weirder than if I answered “yes” to their mocking “afraid of COVID?” 🙃
Thanks for looking out for us. I wish more people looked at it the way you do. It’s been really weird seeing headlines since 2022 that excitedly proclaim “hey its only old people and disabled people dying now!”
I’m so sorry for you, man. I had to take care of my parents when covid started (they’re all fine now) and couldn’t stand the mouth breathers thinking only they and themselves mattered.
I want to share my experience as a disabled person, because I think it’s very easy to simply not notice our non-existance:
I don’t exist anymore. I’m a hermit. It’s been years since I’ve done anything in public. I go to the rheumatologist, I go to a lab to get blood tests, and once a year I get an x-ray to make sure I don’t have TB. I don’t do anything else. There’s about a two week period where being outside isn’t some unbearably high or low temperature that exacerbates my condition.
Please care about covid. Just, please. Do it for people like me if that helps you, but mostly do it for yourself. This virus can make you like me and it’s miserable (I was sick before Covid, but Covid is known to trigger autoimmune conditions which are the primary cause of my suffering).
*waves* Hi, I’m new here. Recent owner of (currently) 12 different autoimmune markers. 😭
I’m so sorry, it’s not a good time. I hope you find treatment that offers some level of relief.
Scariest part is the discovery and uncertainty of it all. "oh well if it’s scleroderma, you’re dead in 10 years. If it’s just scleroderma Ana, maybe it’s lupus. It could also be this weird ass thing that less than 1000 people in the world have. Well, I mean you have the marker, but it could also be lupus. Maybe MS. Are you still having dysphagia and have you choked on food lately? "
Excuse me while I gently sway back and forth in the corner over here.
And don’t get me wrong, I’m not a antivax person, like at all, I have 5 rona shots now. But if someone tries to suggest with 100% absolute certainty that either covid itself or the toll the vaccine took on me didn’t unlock an underlying autoimmune disorder, I’ll kick em. I’m not saying that the vaccine gave me an autoimmune issue. I’m saying it likely existed prior but was the catalyst.
I’m not in quite as bad shape but I also reacted badly to the vaccine. I get awful migraines after every shot/covid exposure lasting months and it’s become permanent since the last one. I quite literally have not had a single day free from migraines in 6 months and I’m completely intractable to every medication we’ve tried. like they’re talking about burning out various nerves in my face and neck to try and prevent them but it feels hopeless. I no longer get to have a social life and I’m struggling to keep a wfh job - I’m effectively bedridden all the time because of the side effects of migraines (dizziness, vertigo, muscle weakness, primarily), and I’ve been getting seizures for the past year.
I wish people would just do the bare minimum to protect people like us but I’ve mostly given up. just trying to get used to my new, extremely small world.
you mentioned burning nerves in your face but have you looked into botox for migraines? they inject in the back of your neck. Or maybe doctors already suggested this for you? I understand they only use it for very severe migraines.
The uncertainty is awful. It took me ten years to get diagnosed with anything. I had so many doctors that thought I was just seeking pain pills. I had to beg a primary care physician to refer me to a rheumatologist. The rheumatologist guessed what I had within 5 minutes. A few blood tests, X-rays, and an MRI later and I had a diagnosis. Ten years and then someone guesses it in 5 minutes. Autoimmune diseases are weird like that.
I’m also incredibly pro-vax, but those things knock me on my ass for days. Seems pretty common for people with autoimmune diseases.
My shit started about two months after having Covid. Longgg before I got vaccinated. I think some people think it’s the vaccine because problems don’t tend to start right away when you have covid. It takes a while.
I never tested positive for covid. I was sick once, but repeatedly tested negative across multiple brands of at home kits. My wife was sick a couple of weeks afterwards, and tested positive at the first sniffle.
🤷🏼♂️
Hugs ❤️
You’re in good company
Thanks. Very much. :)
Clever username.
Thank you! :D
Welcome to the club! Herbal tea?
👋 Sure haha
100% with you. Haven’t taken my mask off in public in years, and making regular attempts to goad my friends in to putting theirs back on.
Since the beginning of the pandemic, my biggest fear hasn’t been to catch the virus, but to spread it, especially to my immunocompromised relatives. You’d have to see when I tell that to people; they look at me weirder than if I answered “yes” to their mocking “afraid of COVID?” 🙃
Thanks for looking out for us. I wish more people looked at it the way you do. It’s been really weird seeing headlines since 2022 that excitedly proclaim “hey its only old people and disabled people dying now!”
If more people thought like you I could have a life again. I’m severely immunocompromised and COVID almost killed me when I caught it a year ago
I’m so sorry for you, man. I had to take care of my parents when covid started (they’re all fine now) and couldn’t stand the mouth breathers thinking only they and themselves mattered.
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Hi there - I am also immunocompromised and have 2 exciting autoimmune diseases. I work in an office every day (actually a lab, but regardless).
Your behaviour is not normal, and you should seek therapy so you can enjoy your life!