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Let's put her on saline & discharge right away
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discharge = discharge from hospital
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this post was submitted on 30 Jul 2024
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Chronic Illness
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A community/support group for chronically ill people. While anyone is welcome, our number one priority is keeping this a safe space for chronically ill people.
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- Absolutely no ableism.
- No quackery. Does an up-to date major review in a big journal or a major government guideline come to the conclusion you’re claiming is fact? No? Then don’t claim it’s fact. This applies to potential treatments and disease mechanisms.
- No denying or minimising challenges faced by chronically ill people. This is a support group, not a place for people to spout their opinions on disability.
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This sometimes doesn’t work. My wife is severely ill. Has been for years. A couple years ago she developed a wound on her heel that just wouldn’t heal. She spent a week in hospital while doctors tried to figure it out. In the end, they just thought she was fucking nuts given her constellation of symptoms and the fact that she is a woman. This dumbfounded me because she had a fucking wound on her heel. I told her that the wound was finally proof that she was sick and it was a good thing. Man I was fucking so wrong.
We finally found an expert in mcas who was like, yep you have mcas, you are the worst I’ve ever seen and here is a med for it. She is still severely ill, but her heel wound, which inspired no curiosity in the hospital doctors, is finally closing.
TIL about MCAS. How horrible, I hope they can cure it someday.
I thought MCAS was the thing that was crashing the 737 Max 8 planes by pushing the nose down.
No that's called short term gains
It's looking to be possibly more common than was thought, around one in twenty people, so you probably know someone with it. The symptoms vary significantly in type and severity. Some people are completely disabled, others have no idea they have it. I have it and mine is medium spicy - I can manage it with a shit ton of drugs and lifestyle changes. Still hoping for a cure as it fucking sucks.
I have so serious side effects from my anti-seizure medication it literally disables me more than my seizures (note that I rarely had seizures, it was just too scary for my parents), but every complaint of mine was just dismissed.
I’m so sorry everyone is so invalidated.
What medication?
Valproic acid. It's so infamous as a mood stabilizer that Scientologists were using it as their example of "bad medications", but once toxic positivity around mental health care became fashionable, people were forced to wipe the internet on documenting their misfortunes with the medication.
Hey! I have MCAS too! Shit sucks
I’m sorry. It does blow pretty bad.
Its like my nail in the coffin.
I’m already bedridden because of two other chronic illnesses and then a covid infection somehow made me develop mcas
Luckily we haven’t been blessed with Covid (probably because she is home bound and we do not socialize). Her illness started with a virus like ten years ago. I’m her full time caregiver because the illness is so bad. Sucks.
Hey fellow MCAS person (well, their spouse)! I was reading your comment and was thinking "that's sure as shit MCAS". Surprise!
Glad her heel is doing better. If you ever need any MCAS advice, I've been managing mine for years and know a number of other folks with experience. I'd bet dollars to donuts we're all in the same geographical region too, so I may be able to recommend some doctors if needed.
Thanks for this. She is currently seeing a guy who collaborates with Molderings and Afrin. He has tons of publications and is spending a lot of time with her. She sent him a letter describing her illness because he was closed to new patients. He called her and talked with her for 2 hours on the weekend the day after he got her letter. So we’ve got the Dr thing covered.
She’s real bad. I am her full time care giver because the pain and sensitivities are so debilitating for her.