Kate
@findingk8.bsky.social
One day at a time, golden retriever at my side.
hEDS & all its friends (POTS, MCAS, CCI)
Retired flight RN, aspiring NP?
Hope isn’t found, it’s built - through action, perspective, and connection.
📍South Central PA
hEDS & all its friends (POTS, MCAS, CCI)
Retired flight RN, aspiring NP?
Hope isn’t found, it’s built - through action, perspective, and connection.
📍South Central PA
Heading into surgery today. Wearing my new shirt to the hospital. It says “Most likely to meet the deductible”. Trying to find some humor going into a surgery that will determine if I will gain leg strength back or be on wheels. I don’t care either way, I just want to live again.
February 24, 2025 at 1:39 PM
Heading into surgery today. Wearing my new shirt to the hospital. It says “Most likely to meet the deductible”. Trying to find some humor going into a surgery that will determine if I will gain leg strength back or be on wheels. I don’t care either way, I just want to live again.
Reposted by Kate
Y'all, my very disabled homeless friend Jessi is stuck unable to pack up their stuff before checkout time at 11 am Pacific today while her partner is having seizures. He can take an ambo but she's stuck!
Please help spot them another night! 💔🙏💔
linktr.ee/Stardrifter42
Please help spot them another night! 💔🙏💔
linktr.ee/Stardrifter42
Jessi, Disabled Artist | Linktree
Disabled artist and gamer, nerd. Out here trying to exist with my family.
linktr.ee
February 19, 2025 at 2:23 PM
Reposted by Kate
NEW: A letter from an anonymous federal worker. Please read and share: www.muellershewrote.com/p/letter-fro...
Letter From a Federal Worker
This is a heartbreaking letter that a federal worker has asked me to share with the public.
www.muellershewrote.com
February 19, 2025 at 2:00 AM
NEW: A letter from an anonymous federal worker. Please read and share: www.muellershewrote.com/p/letter-fro...
Reposted by Kate
When a non disabled person gets hurt or seriously ill, they don’t hesitate to go to hospital
They have faith they’ll be treated quickly, feel “better” & get to go home
When you’re disabled, you learn to avoid hospital at all costs.
Your faith in healthcare vanishes & that loss is painful:
They have faith they’ll be treated quickly, feel “better” & get to go home
When you’re disabled, you learn to avoid hospital at all costs.
Your faith in healthcare vanishes & that loss is painful:
"I Won't Go to the ER Unless I'm Literally Dying"
When you're disabled or chronically ill - learning when to seek medical care (and what that care will look like) is a painful and traumatic journey. It often ends in "I will never go to the ER again."
www.disabledginger.com
February 17, 2025 at 5:23 AM
When a non disabled person gets hurt or seriously ill, they don’t hesitate to go to hospital
They have faith they’ll be treated quickly, feel “better” & get to go home
When you’re disabled, you learn to avoid hospital at all costs.
Your faith in healthcare vanishes & that loss is painful:
They have faith they’ll be treated quickly, feel “better” & get to go home
When you’re disabled, you learn to avoid hospital at all costs.
Your faith in healthcare vanishes & that loss is painful:
Studentaid.gov FAQ page about SAVE says payments will resume no earlier than Sept 2025. Someone want to tell me why Nelnet has them resuming May 19? I’m a disabled nurse with no income. My balance is $268k. @aoc.bsky.social @petebuttigieg.bsky.social @thesbpc.bsky.social
February 17, 2025 at 4:05 PM
Studentaid.gov FAQ page about SAVE says payments will resume no earlier than Sept 2025. Someone want to tell me why Nelnet has them resuming May 19? I’m a disabled nurse with no income. My balance is $268k. @aoc.bsky.social @petebuttigieg.bsky.social @thesbpc.bsky.social
Reposted by Kate
PLRC & 4YouAndMe are recruiting Long COVID patients to work on an app to help patients manage symptoms. Participants are compensated and will receive wearable devices. Please see the attached flyer for more info, and contact [email protected] with questions or if you are interested!
January 21, 2025 at 7:21 PM
PLRC & 4YouAndMe are recruiting Long COVID patients to work on an app to help patients manage symptoms. Participants are compensated and will receive wearable devices. Please see the attached flyer for more info, and contact [email protected] with questions or if you are interested!
Reposted by Kate
When you’re chronically ill, your baseline is everything. Managing it can be a full time job.
Non disabled people can’t understand how hard we work to ration energy, avoid infections & minimize setbacks.
Even when you do everything “right”, progress can be wiped out in an instant 🧵
Non disabled people can’t understand how hard we work to ration energy, avoid infections & minimize setbacks.
Even when you do everything “right”, progress can be wiped out in an instant 🧵
February 12, 2025 at 3:31 AM
When you’re chronically ill, your baseline is everything. Managing it can be a full time job.
Non disabled people can’t understand how hard we work to ration energy, avoid infections & minimize setbacks.
Even when you do everything “right”, progress can be wiped out in an instant 🧵
Non disabled people can’t understand how hard we work to ration energy, avoid infections & minimize setbacks.
Even when you do everything “right”, progress can be wiped out in an instant 🧵
Reposted by Kate
Please read the doc provided by @altssa.bsky.social
If you want to help, visit here:
If you want to help, visit here:
February 12, 2025 at 5:54 AM
Please read the doc provided by @altssa.bsky.social
If you want to help, visit here:
If you want to help, visit here:
My physical therapist is a part time matchmaker. I met another patient yesterday who had my same surgery a year ago. Hope, but also reality, was seen. Connection is what keeps me out of despair with a disease that is never cured. #hEDS #EDS #CCI #POTS #NEISvoid #disability #raredisease
February 11, 2025 at 9:13 PM
My physical therapist is a part time matchmaker. I met another patient yesterday who had my same surgery a year ago. Hope, but also reality, was seen. Connection is what keeps me out of despair with a disease that is never cured. #hEDS #EDS #CCI #POTS #NEISvoid #disability #raredisease
I try to find ways to explain Ehlers Danlos to people who don’t understand. Imagine your house was framed up with defective wood. When you move in, you start noticing problems. You hear cracks and shifts. You call someone to fix the drywall and the ceiling (that’s the orthopedic territory). (1/4)
February 9, 2025 at 7:53 PM
I try to find ways to explain Ehlers Danlos to people who don’t understand. Imagine your house was framed up with defective wood. When you move in, you start noticing problems. You hear cracks and shifts. You call someone to fix the drywall and the ceiling (that’s the orthopedic territory). (1/4)
We’re raised to trust a doctor’s word, but in EDS, it’s often other EDSers that often have the best information: who to see, what works for them, education on the condition. When we find the good docs, so many are OON because they’re tired of insurance nonsense. Sigh. #EDS #hEDS #healthinsurance
February 8, 2025 at 3:25 PM
We’re raised to trust a doctor’s word, but in EDS, it’s often other EDSers that often have the best information: who to see, what works for them, education on the condition. When we find the good docs, so many are OON because they’re tired of insurance nonsense. Sigh. #EDS #hEDS #healthinsurance
It’s been a rough few days. After my #hEDS diagnosis, I knew there were associated syndromes, but I wasn’t expecting to fill the entire #EDS bingo card. Even harder being a medical provider with #heds. I know too much. #disability #NEISvoid #CCI #AAI #tetheredcord #POTS #MCAS
February 7, 2025 at 12:26 PM
It’s been a rough few days. After my #hEDS diagnosis, I knew there were associated syndromes, but I wasn’t expecting to fill the entire #EDS bingo card. Even harder being a medical provider with #heds. I know too much. #disability #NEISvoid #CCI #AAI #tetheredcord #POTS #MCAS
Reposted by Kate
Living with disabilities is a masterclass in how to handle gaslighting
You get it from everyone. Doctors, family, friends, bosses, colleagues
A neverending litany of people telling you “it can’t be THAT bad” or “you should just do this”
We are the experts in our bodies. Respect us. Listen to us.
You get it from everyone. Doctors, family, friends, bosses, colleagues
A neverending litany of people telling you “it can’t be THAT bad” or “you should just do this”
We are the experts in our bodies. Respect us. Listen to us.
February 6, 2025 at 4:45 AM
Living with disabilities is a masterclass in how to handle gaslighting
You get it from everyone. Doctors, family, friends, bosses, colleagues
A neverending litany of people telling you “it can’t be THAT bad” or “you should just do this”
We are the experts in our bodies. Respect us. Listen to us.
You get it from everyone. Doctors, family, friends, bosses, colleagues
A neverending litany of people telling you “it can’t be THAT bad” or “you should just do this”
We are the experts in our bodies. Respect us. Listen to us.
Reposted by Kate
There’s a new display about Ehlers-Danlos Syndrome at the clinic I go to for shoulder instability.
I’ve never seen anything like this before. It made me feel seen. And it was further confirmation that it’s not “all in my head” as male doctors have said to me in the past.
Representation matters.
I’ve never seen anything like this before. It made me feel seen. And it was further confirmation that it’s not “all in my head” as male doctors have said to me in the past.
Representation matters.
February 4, 2025 at 7:31 PM
There’s a new display about Ehlers-Danlos Syndrome at the clinic I go to for shoulder instability.
I’ve never seen anything like this before. It made me feel seen. And it was further confirmation that it’s not “all in my head” as male doctors have said to me in the past.
Representation matters.
I’ve never seen anything like this before. It made me feel seen. And it was further confirmation that it’s not “all in my head” as male doctors have said to me in the past.
Representation matters.
Reposted by Kate
Whenever a friend develops chronic illness, has a bad experience with the healthcare system or faces temporary disability, they say “oh my god I didn’t know it was THIS bad”
They did know. We told them. They chose not to believe us
Believe disabled people. Listen. Help. One day it’ll be your turn
They did know. We told them. They chose not to believe us
Believe disabled people. Listen. Help. One day it’ll be your turn
February 4, 2025 at 8:19 AM
Whenever a friend develops chronic illness, has a bad experience with the healthcare system or faces temporary disability, they say “oh my god I didn’t know it was THIS bad”
They did know. We told them. They chose not to believe us
Believe disabled people. Listen. Help. One day it’ll be your turn
They did know. We told them. They chose not to believe us
Believe disabled people. Listen. Help. One day it’ll be your turn
Reposted by Kate
If you don't realize this type of scapegoating & stigmatizing affects you, let me remind you that being disabled is the one marginalized grp that ANYONE could enter in a split sec, even if you don't admit disability to yourself. But it shouldn't have to affect you to care about ALL of the injustice.
Disabled people are the largest oppressed group on the planet and our numbers only continue to grow under the current global violent and toxic conditions. We are a part of every oppressed group of people and as such have been part of every movement for justice around the world.
January 30, 2025 at 11:06 PM
If you don't realize this type of scapegoating & stigmatizing affects you, let me remind you that being disabled is the one marginalized grp that ANYONE could enter in a split sec, even if you don't admit disability to yourself. But it shouldn't have to affect you to care about ALL of the injustice.
Reposted by Kate
Yes to all of this. I would also like to add a topic that was not covered in this Opinion piece:
The science of the health needs of people with disabilities.
Also, ppl with disabilities are NOT to be conflated with incompetence
www.who.int/news-room/fa...
The science of the health needs of people with disabilities.
Also, ppl with disabilities are NOT to be conflated with incompetence
www.who.int/news-room/fa...
February 3, 2025 at 8:19 PM
Yes to all of this. I would also like to add a topic that was not covered in this Opinion piece:
The science of the health needs of people with disabilities.
Also, ppl with disabilities are NOT to be conflated with incompetence
www.who.int/news-room/fa...
The science of the health needs of people with disabilities.
Also, ppl with disabilities are NOT to be conflated with incompetence
www.who.int/news-room/fa...
Reposted by Kate
The Ehlers-Danlos Society has sincerely improved my life. If you’re going to follow anyone, they are fantastic.
Dr. Clair Francomano provides an overview of the Ehlers-Danlos syndromes (EDS), discussing symptoms, the impact on daily life, and effective approaches for management and care.
youtu.be/9I1kHUvu_0A?...
What do you wish people knew about #EDS?
youtu.be/9I1kHUvu_0A?...
What do you wish people knew about #EDS?
Ehlers-Danlos Syndromes (EDS) Explained: What You Need to Know
YouTube video by Doctor Clair
youtu.be
January 29, 2025 at 12:27 AM
The Ehlers-Danlos Society has sincerely improved my life. If you’re going to follow anyone, they are fantastic.
Reposted by Kate
Pain in Ehlers-Danlos Syndrome is Common, Severe, & Associated with Functional Impairment:
buff.ly/1omHgsN
#EDS #FOAMed #MedEd #doctors #nurses #EhlersDanlos #opioids #MedSky #Fibro #Fibromyalgia #NEISvoid
buff.ly/1omHgsN
#EDS #FOAMed #MedEd #doctors #nurses #EhlersDanlos #opioids #MedSky #Fibro #Fibromyalgia #NEISvoid
Pain in Ehlers-Danlos Syndrome Is Common, Severe, and Associated with Functional Impairment
The Ehlers-Danlos Syndrome (EDS) is a clinically and genetically heterogeneous group of heritable connective tissue disorders characterized by joint hypermobility, skin hyperextensibility, and tissue fragility. Musculoskeletal pain is mentioned in the diagnostic criteria and described as early in onset, chronic, and debilitating. However, systematic research on pain in EDS is scarce.
buff.ly
January 23, 2025 at 8:15 AM
8 weeks post op from craniocervical fusion today, 6 months into an Ehlers Danlos Syndrome dx. I’m learning that I was in so much pain for 30+ years that having my head bolted on was easy in comparison. There has got to be a better way of diagnosing this. #ehlersdanlos #CCI #AAI #heds
February 2, 2025 at 9:50 PM
8 weeks post op from craniocervical fusion today, 6 months into an Ehlers Danlos Syndrome dx. I’m learning that I was in so much pain for 30+ years that having my head bolted on was easy in comparison. There has got to be a better way of diagnosing this. #ehlersdanlos #CCI #AAI #heds