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!
Apparently, Trump now wants to ban transgender people in the military. USA RIP 2017.
In the ER to get my second dose of antibiotic. This is after waiting almost three hours to be seen. I was here last night with a kidney infection, and had to come back today for my second dose of IV antibiotics. It has to be IV because I don’t tolerate meds orally or through my tube. All this is because my infusion company in Colorado won’t accept a prescription from an Oregon doctor. Hopefully my primary physician will order the remaining doses. If not I’ll have to go to the ER when I get back to Denver tomorrow. Having a chronic illness is a full-time job. I’m still not sure if Medicaid will pay for all this either. At least I have Medicaid. If the AHCA passes I probably won’t even have that.
Even going on vacation is risky business. In Oregon visiting my partner’s family, and in the ER with a likely kidney infection. Having only Colorado Medicaid, I’m really worried about huge bills from all this. Wouldn’t it be nice if we had universal, national coverage? My friends in the U.K. And Canada likely don’t have these same concerns.
The Pharmacy and Therapeutics committee of Colorado Medicaid met today. I’m the vice chair, and when the chair couldn’t make it, I ended up running the meeting with my iPad. It went pretty well, all things considered. One of my goals for the committee is to make sure there are medication options for tubies like me.
Out in my manual wheelchair going to the Phamaly town hall meeting. This is my first time out on mass transit in my manual. The repair company was supposed to come today to look at my power wheelchair, but the tech called out apparently. Third or fourth time that’s happened. Now they can’t come out until Friday. At least the busses run door to door for this trip, and Rose can give me a ride home. It’s almost like someone taking your legs away for a week. Thank goodness I have the manual and don’t have to push myself far tonight.
Out at urology. The suspension on the left side of my power wheelchair is broken, as a piece fell off last week without me realizing. I wish I didn’t have to use it until I get it fixed, but the only backup I have is my manual chair, and my right shoulder is hurting again so that’s not an option. I hope I’m no doing more damage, but what can I do? At least I have my wheelchairs thank to Medicaid. Without them I would be stuck at home with no life.
This was an exploration delivered at the First Universalist Church of Denver on 7/31/16,
I have always led an active life, and love all sorts of outdoor activities. People ask who I am and “A physician,” is part of the answer. That started to change in 2012, when I developed a progressive neurologic condition. Fatigue was one of my first symptoms and I had almost no energy to go out, let alone work. I haven’t lost interest in motorcycles, hiking, skiing, or skydiving, but many of the activities I love take too much energy to enjoy presently. I developed memory problems and was forced to stop practicing medicine because when a doctor forgets something, it’s usually pretty important. The wheelchair I now use due to mobility problems further limits what I can do and where I can go, as our society still has a long way to go with physical accessibility.