@ribbonrx.bsky.social
She/her. Autism mama. Medically retired peds #pharmacist. Prolific maker of CSF-venous fistulas, flattened for 4 years and counting by #spinalcsfleak. Fierce advocate for leak care! Science/medicine loving liberal #exvangelical Christian. www.ribbonrx.com
Hello leaker friend! 💜
January 29, 2025 at 10:13 PM
Hello leaker friend! 💜
This is just more BS that patients with #chronicpain and #csfleak have to deal with. No one believes our condition is as serious as it is. I am essentially bedridden from 8/10 pain daily with pain meds on board. Yet I apparently don’t deserve pain meds anymore.
January 24, 2025 at 10:30 PM
This is just more BS that patients with #chronicpain and #csfleak have to deal with. No one believes our condition is as serious as it is. I am essentially bedridden from 8/10 pain daily with pain meds on board. Yet I apparently don’t deserve pain meds anymore.
Thank you. I wish there was a dislike button!
December 25, 2024 at 8:49 PM
Thank you. I wish there was a dislike button!
It’s difficult to connect on any platform. However, I’m an admin of a CSF leak group on Facebook and there are over 9,400 of us! You are more than welcome to join! Lurk, post, whatever works best
for you where you are. The support and info we share is wonderful. Many 🥄 to you too!
for you where you are. The support and info we share is wonderful. Many 🥄 to you too!
November 22, 2024 at 5:32 PM
It’s difficult to connect on any platform. However, I’m an admin of a CSF leak group on Facebook and there are over 9,400 of us! You are more than welcome to join! Lurk, post, whatever works best
for you where you are. The support and info we share is wonderful. Many 🥄 to you too!
for you where you are. The support and info we share is wonderful. Many 🥄 to you too!
Hello new leaker friend! 👋🏻 waves from bed 👋🏻
November 21, 2024 at 7:04 PM
Hello new leaker friend! 👋🏻 waves from bed 👋🏻
Reposted
Would that the rest of the world listened to autistic people sounding the alarm bells about RFK for 20 years now. We knew he was a dangerous ableist before know he’s a dangerous ableist was cool. His erasure of his Aunt Rosemary has long pissed me off. bsky.app/profile/jenn...
Time to talk about the danger of RFK’s ableism. He repeats nonstop, that he never knew an autistic person growing up. In his era, autistics were institutionalized and schools didn’t have to educate autistic children. His bringing that up is painful for autistic people & it’s also a lie.
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November 17, 2024 at 4:16 PM
Would that the rest of the world listened to autistic people sounding the alarm bells about RFK for 20 years now. We knew he was a dangerous ableist before know he’s a dangerous ableist was cool. His erasure of his Aunt Rosemary has long pissed me off. bsky.app/profile/jenn...