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.

Please please help Jessi with any amount you can TYSM! This is URGENT! #NEISvoid #EDS #hEDS

Letter From a Federal Worker This is a heartbreaking letter that a federal worker has asked me to share with the public.

NEW: A letter from an anonymous federal worker. Please read and share: www.muellershewrote.com/p/letter-fro...

Complaints for serious breaches go NOWHERE. The latest: a “specialist” put false, unrelated diagnoses in my chart during a visit for neck pain. He then told me about a doctor we mutually knew’s health condition during the visit. Then he told me I didn’t need surgery because he didn’t. I AM TIRED!

I am a nurse. And disabled, with a condition hardly anyone understands, much less is willing to recognize out loud that it exists. I’ll go to the ER when I’m pulseless. And even then, only ones I will approve of. Oh the medical PTSD.

"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."

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:

Wrangell is beautiful. I worked for one of the medevac services based in Juneau in the mid 2010’s. I miss the beauty of AK. I sincerely hope this is remedied for you. You are SO needed there in SO many ways ❤️

If they saved 100B, they can forgive my $268k in student loans since I’m disabled.

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

Would love to chat w/ you. I’m also 6 years clean, a survivor of too many traumas, holder of a rehab’s RN license, and still standing tall. My hair is red for the fiery spirit that helps me push through one day at a time!

Since 4/2024: right thoracic outlet decompression (first rib removed), Chiari decompression & craniocervical fusion (head bolted on to C2). Scheduled for tethered cord release in 10 days.

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 emma@4youandme.org with questions or if you are interested!

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 🧵

Please read the doc provided by @altssa.bsky.social
If you want to help, visit here:

As if life with a disability isn’t hard enough already. Ugh.

Legit question, by the FBI and DHS definitions ( 18 USC 2331(5) and 6 USC 101 (18), how is this not domestic terrorism?

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

For hyperPOTS, I can’t do compression & I’m an unreliable eater of salt. I’m taking bisoprolol now but super exhausted. Cardiologist is getting approval for ivabradine (less fatigue). Pacing w/ Visible has helped too - I can’t always tell when HR is high. MCAS is unpredictable for me.

Legit question: by DHS (6 USC 101(18) and FBI (18 USC 2331 (5) definitions, how is this not domestic terrorism on his part?

same problem and someone figured it out for them, so you call them and they figure it out for you - but there is a two year waitlist for them to come to your house to check out the wood. This is the journey of having EDS. But when you get that diagnosis, boy does everything change. (4/4) #hEDS #EDS

to figure out what’s really going on. You know something’s wrong, but each of these people say it’s something small, within their scope. It’s not hard to figure out that the wood is bad, but either none of these people pin it down or put the whole picture together. Maybe a neighbor has the (3/4)

You notice electrical issues (that’s cardiology or neurology) or plumbing (that’s GI or urology). Maybe it’s the foundation, or a roof needs fixed from all the shifting (there’s your surgeons). But no single one of these pins down that the entire house’s wood is defective, so it takes years (2/4)

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)

Thanks Gigi - but I wish I could be practicing with patients. I’ve been out of commission for awhile. Hoping to find my new normal once all the surgeries are done and see what I can offer to the world. Even educating providers would be fulfilling! ❤️

If you’re on Facebook, I highly recommend checking out if there’s an EDS “your state” group. My local group had way more insight & personal experiences into who was good than the EDS website. Sub-specialists included!

My MIND would love to get back to work. If someone could perform a transplant from mind to a new body, I’m all for it. I don’t enjoy being in a body that doesn’t do what I could do years ago.

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

An excellent topic! Expanding awareness and education across the specialties will not only increase a provider’s ability to diagnose hEDS in a timely fashion, but have a trickle down effect to create better patient and family education on diagnosis. A win for everyone.

Wow - Dr. Miller is at LVC - which is right up the road from me. What a small world. I love this community.

I’ll share this with my cardiology NP, who is in an inheritable CV disease program and specializes in POTS and EDS. She’ll love hearing this - and I’m her “product recommendation guru.