At the beach in NJ almost two weeks ago now. I’ve been so exhausted I haven’t found the time to post it. In view: my atrophied legs, my (shower) neck brace, two tubes, and deaccessed port. Out of view: the beach wheelchair that got me down there and my dad, who pushed. I was glad to be in the sun, but going to the beach with ehlers danlos and intestinal failure is a lot of work. We were in Wildwood, NJ for 5 days and I only made it down to the beach twice, once with IVs hooked up. Still nice to do something normal for once.
Went to the Crayola experience today. It was a sensory nightmare and I got quite overloaded. At least I got to make my own crayon. They need to make adult, sensory friendly places like this… 😜
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!
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…