Sage

I’ve been extremely privileged to have a solid Long Covid doctor since Sept 2021 who’s been up for letting me try relatively low-risk-profile meds based on case reports of improvement in my symptom clusters.

And! Everyone deserves this level of care and support. It shouldn’t be a privilege.

By my count I’ve used 11 of the 29 possible #LongCovid interventions in this list. And they’ve made a big difference!

By my count I’ve used 11 of the 29 possible #LongCovid interventions in this list. And they’ve made a big difference!

Last time I went to my dentist they offhandedly mentioned something about having texted me about the appointment. “Oh, I didn’t get a text.” They were worried. I told them I vaguely recall at some point in the prior doctor’s tenure telling them they had to take my number out of the texting system.

We collated the latest data to enable conversations between people with Long COVID and their providers about what interventions to try.

I hope this helps folks make thoughtful decisions about what is right for them & decreases some suffering ❤️‍🩹

New Seanan book day AND I got an immediate skip the line copy in Libby!!! Even better. 😸😸😸🐘

Aaaaaaahhhh new Seanan book day!!!

Huh, as someone on both LDN and Tirzepatide (I mean, probably… 99% sure I’m in the treatment arm of LOCITT-T) I hadn’t quite made that connection between the two before. Thanks!

You can tell if someone is a chemist or a leftist by how they pronounce the word unionized.

(I’m a physicist and I mostly get by with context, but occasionally trip up.)

1) I’d love to see more people in the world learn to say things like: I can see you’re having a hard time right now…I’m having a hard time holding space right now because I’m also struggling. But I hear you and I’m sorry you’re hurting, too. Instead of “WOW YOURE TOO MUCH OMG.”

My encroaching migraine thinks that sounds incredible! (I hope you are having that time for more positive reasons.)

What's a Panama? Ruminations on the past, the things we are taught as children, and war with Iran

Concerning the war in Iran, and probably one of the saddest things I've ever written.

catvalente.substack.com/p/whats-a-pa...

For Long Covid Awareness Month, sending love to everyone who has friends, family and/or partners who have no awareness that it's Long Covid Awareness Month

ah, well, then frogging was the right call.

I once knit an ENTIRE bag/backpack in the round after twisting the stitches at the join - somehow I convinced myself that it would untwist when I cast off.

… but was the gauge correct with the 4s?

Which is all to say - it’s my theory that it matters a LOT what inflammation state your body is already in, and possibly avoiding mRNA vaccines that get you to make a bunch of spike protein is better. I wouldn’t get a shot in the middle of a big flare, but when things are under control I would.

I have also gotten multiple shots since then - never Pfizer again, Moderna 1-2 times, always Novavax since it’s been an option. I heavily pre- and post-medicate with extra antihistamines (and my baseline dose is already decently high, H1 and H2). I have never had worsening of my symptoms since.

My Long Covid got a lot worse after my initial vaccine series in 2021. I didn’t really qualify for an ME dx beforehand, and over the following 2-3 mo I devolved to moderate-severe ME, nearly bedbound.

powdered* chilies

It also really looks like it’s what most Americans would call “chili powder,” by which I mean a mix of ordered dried chilies, cumin, probably oregano, and maybe other spices and herbs - it’s the wrong color for Tajin!

Ideally, this one; everyone else can fuck off somewhere else.

I have a Rollz mobility (also heinously expensive and a privilege to be able to have), which I got mostly for the transport chair aspects. But I find myself using it as a rollator more often than I’d expected to! “Need to be able to sit” is so simple and yet so poorly supported by the world. :/

Thank you 🐘❤️

Oh hey, this post made me realize it’s the last day of February tomorrow. Which is my six-year acute covid onset anniversary (or as close as I can get, since there was a February 29th in 2020).

@sevier.io , would you be willing to answer and maybe boost to your followers?

But I’m still kind of salty about them refusing me in the Long Covid clinic, and wonder how they’re handling things now - so few cases are tested, and you only know in hindsight that you needed that.

They also wouldn’t take me in the LC clinic because I was a first-waver with no access to testing in Feb/Mar 2020, even though I had a clinical dx from an infectious disease doc. I ended up on the ME/CFS clinic waitlist but never went to the appointment, because Kaiser finally started a LC clinic.

Probably just a typo?

This screenshot version is still up here?