My last day at work has been scheduled. In just 3 shifts, my 25 year career in #proAudio comes to a screeching halt while I enter the terrifying world of #disabilityInsurance.
All this because I caught #covid19, once, at work, in June 2022, despite having 4 vaccines.
The first 12 weeks were bad. Then I got a little worse each week. My weight tanked. I am 6' 3 and was a little over 200lbs (my normal weight). A year and a half later, I presently weigh 145 and dropping.
I was diagnosed with #meCFS, #PEM, #POTS, and am still having tests (CT, gastroscopy, biopsy) done on my GI.
#LongCovid is very real, and has robbed me of the luxury of clear though, easy movement, and a "normal" life.
Don't get Covid. Don't get Covid again. #WearAMask, please.
I just found out that the social resting group that I'm part of is moving to a time I can't attend because it's during my busiest work hours (pre-5pm Pacific). Aside from being sad because I've really enjoyed bonding with these folks who also have energy-limiting conditions, I'm starting to think about how else to connect with folks this winter.
Does anyone have any recommendations for online camera-optional meetings or support groups that are accepting new members? Please boost for reach. #MECFS#NEISVoid#novid#POTS
Awhile back I went to a specialist for unexplained & painful lower leg swelling. His diagnosis?
“Maybe your legs are just getting fat.”
Horrified…I asked how many people gain weight ONLY in their calves. He shrugged me off. A 🧵 on knowing your body & advocating for care
This doctor did NO tests before deciding it was weight gain. Wouldn’t discuss it with me further & wouldn’t permit me a second opinion. I went home completely dejected and also worried because I KNEW something was wrong.
For the next few days I elevated my legs as much as possible and tried to gently massage them to see if it helped. They just kept getting bigger. Eventually they started weeping (fluid was seeping out of my skin) and my ankles were dislocating from the pressure.
So I went to the ER. I was actually nervous about going because I could only imagine what that doctor had put in my chart. Thankfully I had a doctor who took the swelling very seriously and ordered a wide range of tests (and immediately put me on bed rest to protect my ankles)
Turns out it was a combination of third spacing from my MCAS (when the fluid doesn’t stay in the vascular system & leaks out into the tissues - can be a big issue if you have POTS as well) and low albumin. Dangerously low albumin.
Needless to say I was suffering from malnutrition due to my extensive GI issues and that was causing the swelling. It most definitely wasn’t weight gain. I was underweight with the exception of my legs.
I never knew that low albumin could cause painful swelling like that - nor did I even think that I was suffering from malnutrition. But with both POTS & MCAS it makes sense.
Our digestive systems are controlled by the autonomic nervous system (the system malfunctioning when you have POTS) so it’s not uncommon to experience vomiting, diarrhea & other gastric complaints.
MCAS only compounds the issue by limiting the foods you can tolerate and also causing vomiting and diarrhea. The two conditions make getting adequate nutrition a challenge - especially if you’re on the severe end of the spectrum
I’m very grateful to the doctor who figured it out and helped me get homecare so I could get proper nutrition & stay off my feet while the swelling was at its worst. But it took a LOT of courage to go to the ER after being so rudely dismissed.
This is a lesson in the importance of knowing your own body & having an advocate with you whenever possible. I KNEW something serious was wrong but I had no one with me to challenge the first dismissive doctor. And he was completely unwilling to listen to me.
Don’t ever feel like you can’t get a second opinion or go to a different hospital if you feel you aren’t being taken seriously. And don’t ever apologize for advocating for your health. If you don’t have someone who can go with you - try & phone or video a friend.
Lastly can we please start listening more to patients? We know our bodies best and when you dismiss us it causes not only physical damage - but emotional damage too. You make it harder for us to seek care in the future.
Patients shouldn’t be dismissed without any tests being run. Had I not gone to the ER I could have ended up with life threatening cardiac issues from the electrolyte & fluid imbalance. A simple lab test would have confirmed the diagnosis had the first doctor cared to do them.
This experience was also an excellent reminder of the far reaching effects of dysautonomia & MCAS. It’s important to be as educated as possible in these conditions & the strange downstream complications they can cause.
And remember dismissal & gaslighting is often far worse for marginalized individuals. There’s a LOT of bias in medicine. If you’re someone in a position of privilege please call it out when you see it - and offer to be an ally to those who need support. Allies save lives
I try really hard to remember accessibility tools (ALT Text).
Still learning how this all works. Not great at social media in general. Previously found with the same handle on the birdsite, and several other instances (weirder.earth and mastodon.social specifically).
#POTS#MECFS people: I've been told of a service near me that will give you IV fluids (with electrolytes if needed) for £100. I think this could help me, but what I'm looking for is first person accounts of the effectiveness of this.
If you had it, did it help? If it helped, how long did it help for?
I can afford a one off payment for something like that, but if it doesn't last very long, I'm not sure it's worth it.
People with experience only please, not speculation.
After 14 years of struggling with part-time work and/or part-time college, I'm applying for SSDI. I'm anxious, but I have a supportive family, specialist, and therapist.
Anyone have any tips for applying? I'm slowly working my way through "The Sleepy Girl Guide To Social Security Disability," so I have a lot to reference, but I'm wondering if anything has changed in the past couple of years for people with #POTS and #MECFS.
I'm not going to lie: it's been challenging dealing with major fatigue, brain fog, pain, breathlessness, random flare-ups, and an ever growing assortment of medical and mobility aids.
I'm not saying this as a pity party, but rather to remind you that every time you get #Covid, it's another chance to join my Long COVID Cool Kidz Club, and you really don't want to be a member. The dues are too high, theres no easy way to cancel your subscription, and the service is terrible!
Thank you Mastodon and the Fediverse for the laughs, conversations, connectedness and the cat photos..... Sooo many cat photos. You really put the social in social media, you adorable weirdos. ❤️
I like working on projects that enable marginalised persons to take back their autonomy on and offline. I subscribe to #diy and am a voracious #autodidact. I make #bots for #mastodon and the #fedi. I'm building a replacement for #bandcamp and #spotify.
Quick comment on that last boost (#GoOutsideForMe, where you can share simple videos (even no talking necessary) with people here who can't often go out due to disability or other factors) - if you are an outdoor person at all & this strikes you as interesting and something you can do - please read the comments for more ideas & information on how to do it & and how to boost.
Disabled and chronically ill person withbsupport needs is raising money for basic necessities, food and an immigration Visa to remain in partner's country.
$50 of $600 raised!
(We're getting there!, please boost if you cannot donate!)
For whatever reason the brainfog that I typically deal with on a daily basis has noticably improved. It makes my job flipping through multiple spreadsheets 100 times easier and faster. For example- imagine having to do something as simple as copy & pasting information from one sheet to another but you have 4 sheets open & your brain suddenly drops what you were attempting to do from memory. This is what brainfog does to me constantly. And I've dealt with it for years.
Want to flag a Long Covid study in need of healthy controls—I’m told they’re having trouble because healthy participants keep getting #Covid and often are no longer so healthy afterward 🫠
Which is a great reason all of us should want to push LC research forward—and you can help here entirely from home! Just sign up and the surveys will be emailed to you!
"This month, the organizers of Long Covid Moonshot put together an 'Unhappy Holidays' card, letter, and calling campaign directed at legislators. Some from the international community joined in too, writing cards to their respective governments."
Researchers around the U.S. are studying an immunotherapy drug, efgartigimod, to see if it may help Long COVID POTS patients. Learn whether you can participate in this study"
Ich habe als Folge von #PostCovid die chronische Erkrankung #POTS (posturales Tachykardiesyndrom) entwickelt und suche jetzt, weil ich zurück nach Kiel ziehe, gute hausärztliche Betreuung, weil ich regemäßig Rezepte und so brauche. Idealerwise hat das Personal schon mal von POTS gehört, zumindest sollte aber PostCovid als somatische Erkrankung ernst genommen und nicht psychologisiert werden.
Kann mir jemand eine Praxis empfehlen? Dankeschön!
So, here’s some personal and professional news… I’m going to be leaving my job pretty soon. 😬
It’s a bit of a wrench, because this job has been a big and exciting thing, for lots of reasons. But, you know, I have been having a shit of a time with the old #CFS and #POTS lately, and…
A new way of thinking about persistent infections, such as long COVID and chronic Lyme disease
“Infection-associated chronic illness” sounds like a mouthful.
But using that name has sparked a paradigm shift in how researchers and others view ailments that can keep people sick for years—with few or no options for getting better.
The only doctor that treats #POTS in western Canada has declined my referral, which was at the request of a cardiologist I waited to see for 5 months.
I can’t even with this country. I hate this medical system. I hate it. All of it. I’m so tired of having to be my own doctor/case manager. For f*cks sake.
I have a diagnosis, and I’m on a medication for treatment but was told to be followed by a specialist after I moved here 9 months ago.
"In our unmatched comparison, we observed that, following #COVID19, POTS and ME/CFS yielded higher rates than after negative testing. In absolute terms, we observed #POTS & #MECFS diagnoses to have a similar disease burden as DM [diabetes]"