Nuwuzoho

The supplement graveyard 🪦

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My feed is increasingly looking like the pre-credit montage of headlines in a post apocalyptic action movie.

Did he try yoga though??

IMPORTANT CAUSE ⤵️

#LongCovidAwarenessDay
#CovidIsNotOver

Do you agree with the percentages? What’s your experience? #pwME #longcovid #POTS #MCAS #mecfs #pwLC #chronicillness

As someone with long covid ~ 40% of medical providers I feel have been actively wanting to harm me due to stigma. Another 40% indifferent to my condition, 19% want to help if they could, but lack knowledge and won’t prescribe off-label to try to help. 1% at best knowledgeable and willing to help

I once had a sports med doctor push my sacroiliac joints back into place and it was amazing. Def a hEDS thing for me

beautiful national parks to visit.

trains that get you to them.

biomedical research to treat my disease so I can go hiking.

Only in the context of Washington DC! Statehood now

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

And then come the suggestions to try Tylenol, or a tens unit, or CBD. You think I haven’t tried those things? What’s going on is so far and beyond those interventions

And it’s in your whole body, for over a year continuously. Also, your joints are painfully popping out of place from hyper mobility.

Super fun, super normal

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

Gotta throw the apples harder

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.

Idk probably the unending physical agony, but idk lol

I bought one of those lactic acid meters and my levels were normal even when it feels like
I’m completely filled with lactic acid. It makes no sense. But nothing with this disease does

I’ve been having 1 per day, but maybe I need some more. Good advice! I feel like if I could address the dysautonomia I would be significantly closer to healed…

How much sodium are you taking per day? I keep upping mine but it’s not enough to make a difference to blood volume I think. Gonna try fludrocortisone soon

I fall into the venous pooling category. Even my electrocardiologisr seemed to have no knowledge of different types of POTS. He prescribed ivabradine which was very unhelpful for me. Maybe better for the other type.

I swear I used to be hot and hemodynamically stable!

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

Rolling away in my rollater at top speed

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

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.

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

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Man, I wish my brain worked enough to figure this out

It’s how I’d want to go