Atlantis ADAPT was honored by NEWSED with a Civil Rights Award for the work we did to try to save Medicaid this summer. I was grateful to be included as one of the troublemakers.
Category Archives: Disability
RTD Win
I love the extra space now for us wheelchair users. I also love that I got to help make this happen!
Medicaid protest
It’s amazing what can happen at a protest to try to protect health insurance for millions of people. Fascism at it’s finest.
Fight for medicaid
We’re in Washington DC, ready to fight for Medicaid.
Florida Nursing Home Deaths
https://abcnews.go.com/US/dead-florida-nursing-home-irma-tore-state/story?id=49817477
At least 8 people died in a Florida nursing home after it was left without power. This is one of the many reasons why nursing homes don’t work for us.
Liquid cooling
I was out today in the heat. I don’t sweat from dysautonomia, and my “CPU” got way too overheated. I’m running IV fluids from the fridge to try to cool me off. Anyone else feel like a cyborg? (The mask was because the smoke from fires in the mountains was setting off my mast cell activation syndrome)
Off to nj with tpn
I have a ten day trip to the east coast to visit my family. These are just my medical supplies for the trip, including TPN, my c-pap, catheters, and TPN/hydration supplies. One year ago, I had to cancel this trip to get feeding tubes urgently, because starvation and dehydration were becoming a problem. Now, I’m alive and nourished thanks to TPN (IV nutrition). I am grateful for this treatment, grateful that Medicaid hasn’t been cut and pays for this, and grateful to be alive! NJ here we come! August is also gastroparesis awareness month, and we’re starving for a cure!
New AFOs
These boots were made for walkin. When you have Ehlers Danlos Syndrome and a partial spinal cord injury from Craniocervical Instability you need all sorts of braces to function better. These are my new AFOs (ankle-foot orthoses). My old ones didn’t support my feet enough, so I had to upgrade. The old ones looked like shin guards, so hopefully with these people won’t ask me if I’m a soccer player…
Ada violations
ADA violations abound at my new apartment. I’ve been here a week, and already the elevator has broken twice. They insist it only happens every few months. Meanwhile I can’t get to my apartment. It’s not the only ADA violation…
Official Ehlers Danlos diagnoSis
It’s official! It took five years to get here, but we finally made it. I just heard back from genetics. Genetic testing for Classical Ehlers Danlos was normal, which means I have hypermobile Ehlers Danlos Syndrome by clinical criteria. The zebra is because thats what us EDSers refer to ourselves as. It comes from the med school saying that when you hear hoof beats, you shouldn’t think zebras – meaning common stuff is common. I guess, sometimes you should think zebras…