tamaradnomad.bsky.social
Disabled advocate - #Interiordesigner - Nomad - #Anthropology student - Multi local - #SWYer - #Fibro + #MECFS - 1 of the #MillionsMissing + #Disabledguerrera
136 posts
201 followers
128 following
Regular Contributor
Active Commenter
comment in response to
post
Today's action is the single largest mass-illegalization event in US history.
350,000 people woke up this morning with legal status, living and working here with official permission. They'll go to bed as undocumented immigrants facing deportation.
comment in response to
post
The lesson is that yes, kids can get infection-associated chronic diseases like #MECFS. Predisposing factors include hypermobility or orthostatic intolerance.
Learn so kids in your life don't have to go through what I did.
The Pediatric Primer:
pubmed.ncbi.nlm.nih.gov/28674681/
(14/14) #MedSky 🧪
comment in response to
post
Anyway, that's what I was thinking as I was gasping for air for hours today, along with: I have to find another way to address autonomic symptoms.
And hoping that this doesn't precipitate such a bad crash that I can't make #MillionsMissing this year. (13/14) 🧵
comment in response to
post
And what I think is: I could have had a diagnosis of #MECFS at age 11 and known what to watch for when I started getting sick as an adult.
When I think of how differently my life could have gone if any of the adults around me had really listened, I'm angry on behalf of child-me. (12/13) 🧵
comment in response to
post
This is part of why I find the two spikes in diagnosis so relevant and interesting.
But what a lot of people may not know is that many folks experience symptoms as kids and then remit before experiencing much worse symptoms the second time around, as adults. (11/14) 🧵
bsky.app/profile/did:...
comment in response to
post
Since my mom isn't normally out of her mind, I can only imagine what the doctor must've said to her.
I had long since forgotten this to the point that #MECFS didn't even occur to me as a potential diagnosis when I was in my late 20s/early 30s when I was much, much sicker. (10/14) 🧵
comment in response to
post
I went from a plump, happy kid at the top of the 'norm' BMI down to the lower middle of the 'norm' BMI. To the point that when I returned home, people did double-takes and told me my face looked different.
We ate McDonald's salads and Carnation Instant Breakfasts all summer. (9/14) 🧵
comment in response to
post
A kind of terror flashed across the doctor's face. "No, children don't get that, and I think this conversation is over."
Never been hustled out of a doctor's office so fast.
He told my mother that she'd let her kids get too fat & to put us all on a strict diet that summer.
Which she did
(8/14) 🧵
comment in response to
post
Like off-and-on low-grade fever. It was weird for me to go 2-3 days in a row without feeling fluey and having a 99.0 temperature.
And then in the office I got a sudden suspicion. I looked up and said, "do you think I might have what my mother has?"
(that would be #MECFS )
(7/14) 🧵
comment in response to
post
"I'm also tired," I said. "I noticed I get tired a lot more easily than my friends. I like to go biking but then I get wiped out."
"You're out of shape," he said, despite that I had just described doing a physical activity I enjoyed.
I went on to describe a handful of other ME symptoms... (6/14) 🧵
comment in response to
post
"It's not just that," I said. "That part was just weird. It's happened a few times. I should be able to breathe, right?"
"You were being too active. You must be out of shape. You gained a few pounds."
Folks, I was a) 11, and b) within the normal BMI.
Moving on.
(5/14) 🧵
comment in response to
post
"This summer I noticed I had trouble breathing." I described air hunger.
"When you exerted, you got out of breath," my doctor reframed.
"No, it wasn't when I was being active..."
"When, then?"
"Well, once I was on the stairs--"
"You were walking up the stairs. You were being active." (4/14) 🧵
comment in response to
post
After sifting through my health issues, my guess is that I contracted very mild #MECFS at age 11. I remember I went to my pediatrician, and during the time they ask you if anything new has happened, and you're supposed to say, "no, doc! I'm a child & therefore invulnerable!", I said, (3/14) 🧵
comment in response to
post
This is also my longest-running symptom. Long before I would have been diagnosed with #MECFS, I was experiencing air hunger, particularly during the summer on days before it would storm. (2/14) 🧵
comment in response to
post
They just found someone to translate!!!
comment in response to
post
I’ll pass the link on
comment in response to
post
I know. That’s why I’m posting to see if anyone could help. Maybe there some Ukrainian patient that has already translated some documents or that can help talking to his parents
comment in response to
post
Who would pay for it?
comment in response to
post
I know but someone needs to translate the materials and check that are ok. Many MECFS terms need to be translated correctly and he is severe so can’t do it himself. He is about to be sent to a psychiatric…
comment in response to
post
And the whole world prays for that
comment in response to
post
This affects everyone in the world and we can’t do much from abroad. Thank you all who will fight this. I really hope something happens in the States because this is madness!
comment in response to
post
www.congress.gov/members/find...
WaPo's article on the budget cuts, full text (but you'd have to search the budget draft itself to find the info in the first share): archive.is/2025.04.16-2...
comment in response to
post
Call your Congressional reps and tell them that you do NOT approve of these cuts. Pick your grounds based on personal experience (relying on Head Start programs, importance of AIDS/HIV research, ME/CFS funding, wastewater monitoring)-- and tell Congress you're pro-science, not pro-disease. 🧵💪
comment in response to
post
We do have the power to do something about this! Congress has to approve the cuts. And despite the atmosphere of capitulation, Congress already rejected the Trump administration planning to cut 20% of the NIH budget. 🧵
comment in response to
post
And of course the National Institute for Minority Health-- can't have people collecting data on health disparities, after all! 🧵