I have a ten day trip to the east coast. Mine is to visit my family though, while she learns to advocate about climate change. I’m not sure how she got 10 days TPN in two bags. It took me 4! 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.
So I’ve finally gotten around to posting again, in part because I feel like I finally have something to write about.
I saw an optometrist last week who specializes in neurologic conditions, as I have been having problems with reading, eye pain, and left eye blurriness. After examining me he found evidence of previous optic neuritis (ON) in my left eye. He did OCT (optical coherence tomography) right there and found that not only had I previously had ON in my left I, but I had had it in my right eye, and it was more damaged than the left. He also had me look at different colors while covering each eye, and I found that when looking at most colors, they look cooler with my right eye and warmer with my left. It was really bizarre to see this, as I hadn’t even noticed that colors had changed any. Continue reading A long-needed update
This post is going to be mostly an update on what’s going on in my life. Unfortunately I haven’t meant able to post in a while because of my healthcare issues as well as being busy with a number personal things. I’ve also had a lot more trouble typing because of weakness and pain in both of my hands. I recently got a copy of Dragon Dictate software, which I’m using to write this article. I have experience with Dragon from when I was practicing medicine, and it makes it a lot easier for me to write without getting tired. Continue reading Update