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nuwuzoho.bsky.social
Former athlete taken down by covid Here for research & discussion about #longcovid #POTS #MCAS and related conditions Trying to work my way out of the pain cave
77 posts 126 followers 245 following
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Posts 16 Comments 34

beautiful national parks to visit. trains that get you to them. biomedical research to treat my disease so I can go hiking.

submitted 2 days ago • 0 comments

Do animals get dysautonomia? Imagine being a giraffe with POTS, like jfc

submitted 19 days ago • 0 comments

This is how I describe my long covid/ME pain to people: you know the feeling when you get a flu shot and that part of your arm feels heavy and weak for a while? Also, you know that hypoxic feeling when they put a tourniquet on your arm for a blood draw? Combine those, plus you’re being electrocuted

submitted 19 days ago • 1 comment

Back in mid 2020 I offered to source and fund air filters for every classroom in our kids' schools. The school told me that it would prevent the children from getting the essential infections they needed to catch as children. That was the point at which I knew we were doomed.

submitted 56 days ago • 31 comments

Dysautonomia is where immunology, cardiology and neurology meet, and as such as largely understudied and misunderstood. I would rank my providers so far on this subject: 1. Immunology 2. 3. 4. Cardiology 5. 6. 7. …. …. 99. Neurology #pots #dysautonomia #longcovid #pwme

submitted 68 days ago • 2 comments

What if the drones just dropped off a cure for long covid and then left

submitted 69 days ago • 0 comments

My opinion is they covid is a very dangerous virus. In 2020 more than a dozen colleagues of mine died from acute COVID. What did they have in common? Public facing roles where they were likely exposed to high viral loads despite PPE. That doesn’t happen with the flu, EBV etc.

submitted 69 days ago • 0 comments

Not United Healthcare suddenly cutting off my migraine and POTS medications 😵‍💫😣

submitted 74 days ago • 0 comments

A year ago this weekend, I ran a half marathon with friends, and then we danced and partied all day and night. This weekend I got my long-overdue rollater for when I go to medical appointments. Should have done this months ago. Proud of my adaptability. #pwME #longcovid #POTS

submitted 80 days ago • 0 comments

Feeling demoralized after a neurologist appointment. I still can’t comprehend how they don’t understand that ME is a neurological/immune disease, and they should take an interest in it. But what else is new. #pwME #longcovid #mecfs

submitted 84 days ago • 0 comments

Stranger: It really pisses me off to see people still wearing masks Me:

submitted 88 days ago • 3 comments

Even if I found out that I was magically misdiagnosed and had something with a better prognosis, I would spend every last day of my life advocating for people with long covid and ME. I’ve seen enough. #pwME #longcovid #mecfs

submitted 89 days ago • 0 comments

Oh, right it was the Covid restrictions, not the neuro vascular virus leaving people with compromised immune systems

submitted 90 days ago • 0 comments

If I was going to fake an illness I would choose something people believe exists 🙄 #fibromyalgia #chronicillness #spoonie #SpoonieLife #fibro

submitted 91 days ago • 3 comments

I’m thinking of my fellow severe long covid & ME patients today as the Thanksgiving holiday approaches. Not only can most of us not enjoy the food and gatherings like we used to, but we know holiday travel will worsen covid spread, putting our lives more at risk. #pwME #longcovid #mecfs

submitted 90 days ago • 0 comments

submitted 93 days ago • 1 comment