iiinova — where your digital self keeps evolving

Peter Sagal @petersagal.bsky.social · 18/03/2025

Reposted by Nuwuzoho

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

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Nuwuzoho @nuwuzoho.bsky.social · 04/03/2025

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

Nuwuzoho @nuwuzoho.bsky.social · 04/03/2025

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

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Nuwuzoho @nuwuzoho.bsky.social · 27/02/2025

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

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Reposted by Nuwuzoho

Unknown Etiology @viralpersistence.bsky.social · 22/02/2025

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

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Nuwuzoho @nuwuzoho.bsky.social · 11/02/2025

Only in the context of Washington DC! Statehood now

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

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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

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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

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Nuwuzoho @nuwuzoho.bsky.social · 26/01/2025

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

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Gotta throw the apples harder

tern @1goodtern.bsky.social · 30/12/2024

Reposted by Nuwuzoho

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.

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Nuwuzoho @nuwuzoho.bsky.social · 23/12/2024

Idk probably the unending physical agony, but idk lol

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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

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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…

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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!

Nuwuzoho @nuwuzoho.bsky.social · 18/12/2024

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

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Nuwuzoho @nuwuzoho.bsky.social · 18/12/2024

Rolling away in my rollater at top speed

Nuwuzoho @nuwuzoho.bsky.social · 17/12/2024

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

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Nuwuzoho @nuwuzoho.bsky.social · 17/12/2024

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.

Nuwuzoho @nuwuzoho.bsky.social · 12/12/2024

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

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Nuwuzoho @nuwuzoho.bsky.social · 12/12/2024

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

Nuwuzoho @nuwuzoho.bsky.social · 11/12/2024

It’s how I’d want to go

Nuwuzoho @nuwuzoho.bsky.social · 09/12/2024

Gonna name my kid Urticaria

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Nuwuzoho @nuwuzoho.bsky.social · 08/12/2024

I feel like he’s dropping by T Swift style Easter eggs. Real Estate next?

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Nuwuzoho @nuwuzoho.bsky.social · 06/12/2024

It’s so hard to know what is worth the risks. My doctor thinks I may have an immune deficiency so I’m way of things that may further suppress my immune system. I wish we had clear subgroups so we could tell what therapies could help which group

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Nuwuzoho @nuwuzoho.bsky.social · 06/12/2024

Isn’t that what sent Whitney into severe? We are such a heterogeneous group, I’d be afraid to try this, not knowing what might happen. www.healthrising.org/blog/2021/06...

Nuwuzoho @nuwuzoho.bsky.social · 06/12/2024

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

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Nuwuzoho @nuwuzoho.bsky.social · 05/12/2024

Neurologists hate this one weird trick!

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Nuwuzoho @nuwuzoho.bsky.social · 04/12/2024

Do you have POTS as well? I feel like sitting up more exacerbates my POTS. Midodrine helps a bit, other common meds like ivabradine do not.

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Nuwuzoho @nuwuzoho.bsky.social · 02/12/2024

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

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Nuwuzoho @nuwuzoho.bsky.social · 30/11/2024

I can relate to that. I think if we could get some physical relief, the brain would follow. But it’s so hard for the brain to think of anything else when you are in pain and suffering

Guiness Pig @guinesspig.bsky.social · 27/11/2024

Reposted by Nuwuzoho

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

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Nuwuzoho @nuwuzoho.bsky.social · 27/11/2024

I love the whole book series

Nuwuzoho @nuwuzoho.bsky.social · 27/11/2024

Thanks to long covid, my body has one skill, and one skill only left

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Nuwuzoho @nuwuzoho.bsky.social · 26/11/2024

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

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Nuwuzoho @nuwuzoho.bsky.social · 26/11/2024

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