Sara (ME)
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sara1366.bsky.social
Sara (ME)
@sara1366.bsky.social
12 followers 26 following 10 posts
pwME, former Astronomer and physicist. Love audiobooks. Social justice advocate, library worker, still masking, bunny mom, Iranian living in the US
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sara1366.bsky.social
I had no idea Ketotifen is so expensive in the US. $100 a month from a compounding pharmacy.
Suggestions? #MCAS is really a beast.
March 10, 2025 at 6:45 PM
Reposted by Sara (ME)
some-bodies.bsky.social
"Telehealth is a luxury."

For who, though?

#Telehealth #Disability #MECFS #LongCOVID #Healthcare #Bedbound #Accessible #CivilRights #Luxury #SomeBodies
A hand-drawn comic with handwritten text. Top reads: "Some Bodies: Telehell." Just below reads: "'Telehealth is a luxury.'" Drawings show, first, a person with brown hair lying down with their head on a pillow and a blanket covering their body. Their eyes are wide. Next image is a close up on the face and wide eyes. Third, the eyes are even closer. Final image shows one eye close up with the word "how?" written on the eye like a reflection of light. The comic is signed "J.R. '25" in cursive.
February 25, 2025 at 1:31 AM
sara1366.bsky.social
Question for #pwME and #LC folks that have tried Rapamycin.
How long until you saw a change (either way)?
I've spent weeks in a crash/lower baseline and only slowly crawling back up. Is it the meds? The weather? The political and social stress? Who knows?
February 15, 2025 at 5:42 PM