I was quoted in the Denver Post! We actually have 9 advocates upstairs, and there were three of us outside last night. Still good coverage.
Wow. I just found out I have bad arthritis of both hips, I rely on IV nutrition to live, and I’m looking at a neck fusion. I am so terrified right now, not because of my health problems – those I can deal with. What scares me is how this government wants to treat me, because I was born with a genetic condition. Even if you don’t have a disability, you still live with this fear in your life.
So I had my appointment with my GI today. It turns out he didn’t mean the letter he sent to be as inflammatory as it was. I think the fact that English is his second language can be a problem at times.
He mainly wanted to make sure I am talking with a therapist, since this is a lot to deal with. When I assured him I was, he said he was going to write a second letter for the chart to undo the first. I wish he’d just talked to me.
Anyway, I’m scheduled to get a PICC tomorrow and start TPN alongside feeds with the goal of hopefully finding a regimen through the tube that will get me what I need. Good thing too, as the tube seems to be going the wrong way of late. i had to go on bowel rest last night because the pain was so bad, but at least it’s a little better today.
A heckofalot of drama that was likely unnecessary, but at least he’s willing to still help me out and do what is needed. Now it’s time to wrap my head around the fact that I’m starting TPN. With all the drama, I’m not sure I’ve really processed that yet.
Just got home from my neurologist. They think that on top of getting small fiber neuropathy, gastroparesis, and urinary retention starting in 2012, that conversion disorder is still a possibility to explain my other neurological symptoms. I should go out an buy a lottery ticket, to be lucky enough to have all this stuff start at once. The 7 therapists and psychologists I’ve seen since this started haven’t found any evidence of mental illness, but that doesn’t seem to matter. I wouldn’t care that much, except my disability insurance policy has a ‘mental and nervous disorder’ exclusion and can stop paying benefits if disability is caused or contributed to by a ‘mental or nervous disorder.’ They used this to cut off benefits at the end of April, and I have had no income since. Being sick is the easy part, it’s dealing with this bullshit that’s the worst. I could use some love right now.
As I’ve mentioned before, I have sensitivity to light due to my autism and probably my traumatic brain injury. I’ve only learned about my light sensitivity recently, though looking back over my life I’m sure it’s been a longstanding problem. As it turns out, light sensitivity can be pretty common in neurodiverse folks and after brain injury. Light brightness can be a big problem, as can high contrast and certain wavelengths (colors). For me, my light sensitivity means I get sent into overload: my brain shuts down, I can’t think, and all I want to do is curl up in a ball in a dark room.
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.