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.
I am a family practice physician, and I’ve known I’ve wanted to be a doctor since I was 4. I’m fairly intelligent, but I struggled in school and was never in the gifted program. Growing up, people would say to me, “You’re smart, why can’t you just ____.” I felt the same way, and had a low self-esteem and was hard on myself. I never felt like I fit in. I always wanted to, but I could never figure out what I was supposed to do.
This piece is intended to be informational and in no way is meant to diagnose gastroparesis or suggest treatments. If you think you might have gastroparesis or any other medical condition, talk with your doctor.
Gastroparesis (GP) is a fancy way of saying slowing or paralysis of the stomach and digestive tract. It is thought to affect between 200,000 and 300,000 people in the US a year, and is a relatively rare condition. Diabetes is the most common reason for GP, and other causes include viral infection, connective tissue diseases such as Ehlers Danlos, neurological illness like MS, or damage to the vagus nerve during surgery. In more than half of cases a reason is never found. Major symptoms include constant nausea, vomiting, stomach pain, and feeling full after only a few bites of food. Symptoms can get so severe as to prevent adequate nutrition and hydration.
When you have a chronic illness that affects multiple functions, your body quickly becomes a major focus in your life. I spend over 8 hours a day doing physical therapy routines, managing my feeding tubes and pump, setting up medical care, working with aides, and doing what I need to do to deal with pain and other symptoms. During periods when I am having new or worsening symptoms, I can have healthcare appointments 5 days a week. Since I use mass transit it usually takes an hour to an hour and a half to get anywhere, making an appointment an all day affair.
One of the major illnesses I deal with is called Gastroparesis (GP). GP is a fancy way of saying the stomach and intestines stop moving like they’re supposed to and have trouble emptying food. As a result, I deal with nausea and stomach pain on a daily basis, and fill up after only a few bites of food. I don’t often talk about my symptoms because they seem dwarfed behind all of the other problems from my neurological illness, but they have been a constant presence in my life since 2013.
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
I just finished watching a TED speech by Aimee Mullins about being labeled “disabled.” For those of you who are not familiar with Aimee, she was born without some of the bones in her lower legs and feet, and as a result her legs had to be amputated just below the knees at a young age. During the TED talk, she read the entry for ‘disabled’ from a 1980’s thesaurus, which included words like ‘useless’ and ‘mutilated.’ She went on to redefine the true definition of disabled as having a crushed spirit and losing hope. Aimee has never allowed her condition to do that to her. Continue reading Being ‘Disabled’
I was on the East Coast for the holidays. I spent Christmas with my family in New Jersey, and then I traveled down to West Virginia where there was a Healthcare Justice Gathering at Gesundheit, Patch Adam’s land where he’s going to build a free hospital. The experience gave me the chance to think about what I can do to improve access to healthcare in this country, and also about how I want to build community. Since I’ve gotten back though, I’ve spent most of my time in bed with fatigue and muscle spasms. Because I’m an overachiever (and an INFP), all I can think about is how much I want to do to save the world. I fear though that instead, I am going to be this tired for the rest of my life and not be able to do anything. Continue reading Plans for the future…