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.

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.

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.

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?

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)

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!