@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
Today, after 3 years, out of the blue, my PCP decided to cut me off of my pain meds because he’s no longer “comfortable” prescribing them. He’s sending me to pain mgmt for them to take over. Pain mgmt at our hospital is anti-opioid, so I think you see where this is going. I’m not sure I’ll survive.
January 24, 2025 at 10:25 PM
Today, after 3 years, out of the blue, my PCP decided to cut me off of my pain meds because he’s no longer “comfortable” prescribing them. He’s sending me to pain mgmt for them to take over. Pain mgmt at our hospital is anti-opioid, so I think you see where this is going. I’m not sure I’ll survive.
Follow up: today my PCP cut me off my pain meds that I’ve been on for 4 years. Wonder how that’s going to go?
I have a chronic #csfleak for which I am prescribed opioids, but I still spend 23 hours a day in bed. Last year a palliative care doc informed me that my pain “isn’t valid to be treated because it’s not caused by cancer.”
Even my PCP is “truly sorry”. But he won’t do anything.
Even my PCP is “truly sorry”. But he won’t do anything.
Let’s normalize openly appreciating opioids, prescribed and taken responsibly. Some [of us] require these medications to curb immense chronic pain.
Some of us have a legitimate, even urgent medical need for opioids. Your glares, suggestive questioning and “concern” are insulting and inconsiderate.💊
Some of us have a legitimate, even urgent medical need for opioids. Your glares, suggestive questioning and “concern” are insulting and inconsiderate.💊
January 24, 2025 at 6:51 PM
Follow up: today my PCP cut me off my pain meds that I’ve been on for 4 years. Wonder how that’s going to go?
I have a chronic #csfleak for which I am prescribed opioids, but I still spend 23 hours a day in bed. Last year a palliative care doc informed me that my pain “isn’t valid to be treated because it’s not caused by cancer.”
Even my PCP is “truly sorry”. But he won’t do anything.
Even my PCP is “truly sorry”. But he won’t do anything.
Let’s normalize openly appreciating opioids, prescribed and taken responsibly. Some [of us] require these medications to curb immense chronic pain.
Some of us have a legitimate, even urgent medical need for opioids. Your glares, suggestive questioning and “concern” are insulting and inconsiderate.💊
Some of us have a legitimate, even urgent medical need for opioids. Your glares, suggestive questioning and “concern” are insulting and inconsiderate.💊
January 24, 2025 at 1:42 AM
I have a chronic #csfleak for which I am prescribed opioids, but I still spend 23 hours a day in bed. Last year a palliative care doc informed me that my pain “isn’t valid to be treated because it’s not caused by cancer.”
Even my PCP is “truly sorry”. But he won’t do anything.
Even my PCP is “truly sorry”. But he won’t do anything.
Reposted
So what exactly makes a headache orthostatic anyway?
📄 New paper alert 📄
journals.sagepub.com/doi/full/10....
📄 New paper alert 📄
journals.sagepub.com/doi/full/10....
Sage Journals: Discover world-class research
Subscription and open access journals from Sage, the world's leading independent academic publisher.
journals.sagepub.com
January 17, 2025 at 12:53 AM
So what exactly makes a headache orthostatic anyway?
📄 New paper alert 📄
journals.sagepub.com/doi/full/10....
📄 New paper alert 📄
journals.sagepub.com/doi/full/10....
Merry Christmas to all and Happy Holidays to whoever celebrates all the other holidays this time of year! Five Christmases in bed from my #csfleak and counting. I’m not sure I even hope for a cure anymore.
December 25, 2024 at 8:24 PM
Merry Christmas to all and Happy Holidays to whoever celebrates all the other holidays this time of year! Five Christmases in bed from my #csfleak and counting. I’m not sure I even hope for a cure anymore.
Today is the 4th anniversary of my #spinalcsfleak. I was assembling a play kitchen for my daughter for Christmas and blew open my first CSF-venous fistula. Four years & 10 fistulas later, I am still mostly bedridden and housebound but I have made peace with possibly never being well again. #csfleak
December 17, 2024 at 7:56 PM
Today is the 4th anniversary of my #spinalcsfleak. I was assembling a play kitchen for my daughter for Christmas and blew open my first CSF-venous fistula. Four years & 10 fistulas later, I am still mostly bedridden and housebound but I have made peace with possibly never being well again. #csfleak
Reposted
📄 New Paper Alert! 📄
“Flow Void Sign”: Flow Artifact on T2-Weighted MRI Can Be an Indicator of Dural Defect Location in Ventral Type 1 Spinal CSF Leaks
Congrats to @neuroradlal.bsky.social, @dgleao.bsky.social , David Butteriss, @brainscandan.bsky.social - super useful - I'm a believer!!
“Flow Void Sign”: Flow Artifact on T2-Weighted MRI Can Be an Indicator of Dural Defect Location in Ventral Type 1 Spinal CSF Leaks
Congrats to @neuroradlal.bsky.social, @dgleao.bsky.social , David Butteriss, @brainscandan.bsky.social - super useful - I'm a believer!!
“Flow Void Sign”: Flow Artifact on T2-Weighted MRI Can Be an Indicator of Dural Defect Location in Ventral Type 1 Spinal CSF Leaks
Patients with spontaneous intracranial hypotension caused by type 1 dural defects typically have an epidural fluid collection on MRI. Still, the location of the defect is not usually readily identifia...
www.ajnr.org
December 11, 2024 at 8:42 PM
📄 New Paper Alert! 📄
“Flow Void Sign”: Flow Artifact on T2-Weighted MRI Can Be an Indicator of Dural Defect Location in Ventral Type 1 Spinal CSF Leaks
Congrats to @neuroradlal.bsky.social, @dgleao.bsky.social , David Butteriss, @brainscandan.bsky.social - super useful - I'm a believer!!
“Flow Void Sign”: Flow Artifact on T2-Weighted MRI Can Be an Indicator of Dural Defect Location in Ventral Type 1 Spinal CSF Leaks
Congrats to @neuroradlal.bsky.social, @dgleao.bsky.social , David Butteriss, @brainscandan.bsky.social - super useful - I'm a believer!!
Reposted
They say the cover up is always worse.
November 21, 2024 at 6:45 AM
They say the cover up is always worse.
Reposted
Reposted
for context NYC offered a $10k reward for any critical information about the homocide which is about the cost of a single 15 minute ambulance ride after UnitedHealthcare denies coverage bc the EMTs responding to the call were out of network
As police hunted for the missing gunman in a fatal “targeted attack” on the CEO of UnitedHealthcare in Manhattan on Wednesday morning, social media erupted with contempt for the health insurance industry he represented—and his company in particular:
Americans Have Little Sympathy for Murdered Health Insurance Exec
Americans expressed virtually no sympathy for the apparently targeted killing of UnitedHealthcare's CEO by mystery gunman in New York.
www.rollingstone.com
December 5, 2024 at 12:19 AM
for context NYC offered a $10k reward for any critical information about the homocide which is about the cost of a single 15 minute ambulance ride after UnitedHealthcare denies coverage bc the EMTs responding to the call were out of network
Reposted
@swordsjew.bsky.social mentions this in _Wild Faith: How the Christian Right is Taking Over America_. It's basically "no furriner's gonna tell me I can't beat my kids".
As the Supreme Court debates trans kids' right to essential healthcare, today is a good day to ruminate on the fact that the United States is the ONLY UN member state not to have ratified the Convention on the Rights of the Child.
December 5, 2024 at 6:37 PM
@swordsjew.bsky.social mentions this in _Wild Faith: How the Christian Right is Taking Over America_. It's basically "no furriner's gonna tell me I can't beat my kids".
Reposted
One thing I didn’t expect in the wake of the CEO shooting is the sudden attention on health insurance policy. I have seen this video and the BCBS policy itself go viral on almost every platform. People are waking up. Real lasting change in healthcare is coming. youtube.com/shorts/vWA2a...
No More General Anesthesia
YouTube video by Dr. Glaucomflecken
youtube.com
December 5, 2024 at 5:03 PM
One thing I didn’t expect in the wake of the CEO shooting is the sudden attention on health insurance policy. I have seen this video and the BCBS policy itself go viral on almost every platform. People are waking up. Real lasting change in healthcare is coming. youtube.com/shorts/vWA2a...
Reposted
Health insurance is wild. You pay every month for months, years, decades, in case something catastrophic happens.
Then it does and the insurers are like yeah no not THAT kind of catastrophe.
Then it does and the insurers are like yeah no not THAT kind of catastrophe.
December 5, 2024 at 6:09 PM
Health insurance is wild. You pay every month for months, years, decades, in case something catastrophic happens.
Then it does and the insurers are like yeah no not THAT kind of catastrophe.
Then it does and the insurers are like yeah no not THAT kind of catastrophe.
Reposted
Fascinating series of articles on CTD in Neurology in #FrontiersinNeurology including #CSFleak and orthostatic HA.
Great discussion and hypotheses- but surprising how little primary data underpins our current understanding. #knownunknowns
www.frontiersin.org/research-top...
Great discussion and hypotheses- but surprising how little primary data underpins our current understanding. #knownunknowns
www.frontiersin.org/research-top...
Neurology and Connective Tissue
Connective tissue compromise, as is seen in the heritable connective tissue disorders collectively called Ehlers-Danlos Syndrome, but also acquired connective tissue disorders as can be seen in autoim...
www.frontiersin.org
November 30, 2024 at 6:11 PM
Fascinating series of articles on CTD in Neurology in #FrontiersinNeurology including #CSFleak and orthostatic HA.
Great discussion and hypotheses- but surprising how little primary data underpins our current understanding. #knownunknowns
www.frontiersin.org/research-top...
Great discussion and hypotheses- but surprising how little primary data underpins our current understanding. #knownunknowns
www.frontiersin.org/research-top...
Reposted
Remember when "Ferris Bueller's Day Off" tried to teach us about tariffs and no one was paying attention
November 26, 2024 at 4:15 PM
Remember when "Ferris Bueller's Day Off" tried to teach us about tariffs and no one was paying attention
Reposted
#CSFleak "CSF has several critical functions. It protects the brain and spinal cord from injury by absorbing shocks. Suspending the brain in this fluid reduces its effective weight and prevents it from being crushed under its own mass."
theconversation.com/fluid-keeps-...
theconversation.com/fluid-keeps-...
Fluid keeps your brain from crushing itself and shields your spine from shock – a neurologist explains what happens when it stops working
Cerebrospinal fluid can sometimes leak or collect in the brain without an identifiable cause, leading to symptoms that can be difficult to diagnose.
theconversation.com
November 16, 2024 at 7:15 PM
#CSFleak "CSF has several critical functions. It protects the brain and spinal cord from injury by absorbing shocks. Suspending the brain in this fluid reduces its effective weight and prevents it from being crushed under its own mass."
theconversation.com/fluid-keeps-...
theconversation.com/fluid-keeps-...
This is a very odd question, but for #exvangelical friends, does anyone know which Christian music artists are Christian nationalists? I think Skillet is (or at least they have insulting words for the #deconstructed) and I suspect newsboys as well. I’d like to clean up my playlist!
November 26, 2024 at 2:01 AM
This is a very odd question, but for #exvangelical friends, does anyone know which Christian music artists are Christian nationalists? I think Skillet is (or at least they have insulting words for the #deconstructed) and I suspect newsboys as well. I’d like to clean up my playlist!
Reposted
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.
🧵👇
🧵👇
November 17, 2024 at 8:40 AM
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.
🧵👇
🧵👇
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.
🧵👇
🧵👇
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...
Reposted
I’ve spent the last decade chronicling the #Autism rights movement and #Neurodiversity as a political movement. It had slow but gradual gains. But RFK Jr.‘s nomination to HHS takes a sledgehammer to those hard-won gains.
www.msnbc.com/opinion/msnb...
www.msnbc.com/opinion/msnb...
Opinion | Trump's embrace of RFK Jr. is demoralizing for autistic people like me
Kennedy sees autistic people as problems to be solved, not as people with disabilities who deserve to be accepted.
www.msnbc.com
November 17, 2024 at 12:34 AM
I’ve spent the last decade chronicling the #Autism rights movement and #Neurodiversity as a political movement. It had slow but gradual gains. But RFK Jr.‘s nomination to HHS takes a sledgehammer to those hard-won gains.
www.msnbc.com/opinion/msnb...
www.msnbc.com/opinion/msnb...
Reposted
Hello Bluesky! We are a 501(c)(3) nonprofit health foundation focused on raising awareness, educating, & funding research for spinal CSF leaks. Our mission is to reduce the suffering of anyone affected by intracranial hypotension or spinal CSF leak.
You can learn more about us on our website:
You can learn more about us on our website:
Spinal CSF Leak Foundation - Home - Spinal CSF Leak Foundation
Intracranial hypotension due to spinal CSF leak is an important and under-diagnosed cause of new onset headache.
spinalcsfleak.org
November 16, 2024 at 4:35 PM
Hello Bluesky! We are a 501(c)(3) nonprofit health foundation focused on raising awareness, educating, & funding research for spinal CSF leaks. Our mission is to reduce the suffering of anyone affected by intracranial hypotension or spinal CSF leak.
You can learn more about us on our website:
You can learn more about us on our website:
Reposted
Fascinated by the sheer matter-of-factness of this story buried on page 8 of The Liverpool Daily Post, 29 March 1937 – “Ellen the barmaid is now Alan the barman.” Please update your address books. Now, what’ll you have?
February 11, 2024 at 8:10 AM
Fascinated by the sheer matter-of-factness of this story buried on page 8 of The Liverpool Daily Post, 29 March 1937 – “Ellen the barmaid is now Alan the barman.” Please update your address books. Now, what’ll you have?
Peds pharmacist mom problems: kid spikes a fever of 103.5 and I start a mental 5-day countdown and search for signs of Kawasaki Disease. 🥴
November 19, 2024 at 5:24 PM
Peds pharmacist mom problems: kid spikes a fever of 103.5 and I start a mental 5-day countdown and search for signs of Kawasaki Disease. 🥴
Reposted
listening to pods about christian/religious nationalism, please suggest ones you love.
I’m currently listening to a back episode of @mpgphd.bsky.social and @profirmf.bsky.social on Keeping It 101 Pod, later it’ll be Straight White American Jesus with @bradleyonishi.bsky.social and Daniel Miller
I’m currently listening to a back episode of @mpgphd.bsky.social and @profirmf.bsky.social on Keeping It 101 Pod, later it’ll be Straight White American Jesus with @bradleyonishi.bsky.social and Daniel Miller
Keeping It 101: A Killjoy's introduction to Religion Podcast
keepingit101.com
November 17, 2024 at 2:37 PM
listening to pods about christian/religious nationalism, please suggest ones you love.
I’m currently listening to a back episode of @mpgphd.bsky.social and @profirmf.bsky.social on Keeping It 101 Pod, later it’ll be Straight White American Jesus with @bradleyonishi.bsky.social and Daniel Miller
I’m currently listening to a back episode of @mpgphd.bsky.social and @profirmf.bsky.social on Keeping It 101 Pod, later it’ll be Straight White American Jesus with @bradleyonishi.bsky.social and Daniel Miller