Today, quite by accident, I learned that the friendly co-owner of my favorite gluten free bakery has a masters degree in counseling. I dropped in there on my way home from the neurologist, because I was angry and needed to find comfort in bread, but I wasn't willing to hurt myself with wheat. While I studied the menu and asked whether they had anything that approximated a croissant (they didn't), the co-owner casually asked how I was, in the standard social pleasantry sort of way. I told her I was grumpy and I said why. I know something is desperately wrong, but test results came back clean, and while that could mean there's nothing scary to deal with, it also means there is no answer, and thus no treatment for what's bothering me. While she made me a breakfast bagel sandwich (a "Love" sandwich, #5 on their menu, with egg, cheese, spinach, sauteed onion and sweet curry sauce... incredible), she recommended I skip the next several steps, and go straight to the Mayo Clinic. She said that her mom fought her regular doctor for more than a year, and finally had it with them, and went to Mayo to find a tumor on her adrenal glands that had to come off. In her medical records, her primary care doc actually wrote the words "patient is insane." After the surgery, she went back and angrily demanded the doctor write in "patient is NOT insane." The line cook chimed in support for the idea of going to Mayo, and said when you walk in the door, it's like being swarmed with an army of little ants who go over every inch of you to find what's really wrong. It sounded divine, I told them, the idea of a whole bunch of people who like human puzzles focused on me.
I'd love to be comforted that the EEG came back clean. I'm not. I'm furious. Once again, I'm difficult. When it comes to artistic pursuits, I love being unique and unpredictable. If I'm talking about medical issues, I dream of being average. It would be so cool to be someone who could take a couple of Tylenol and be just fine afterwards. The spasm/tic/whatever that keeps pulling my head to the side is getting stronger and more frequent. A wave of nausea heralds the more intense swarms of twitches, and occasionally they release a spritz of stress hormone (I'm guessing) that causes hot stinging pain everywhere that blood flows in my skin, most especially in my face and arms. It's not the sort of thing that lends itself to "wait and see." The best the neurologist could offer was to suggest going off the Botox to see whether it clears up when that's out of my system. But this means that the migraine aura will come back right before Christmas. (I cancelled my Christmas Eve appointment for the next round of Botox.)
The neurologist didn't just tell me to go home and never come back. He is escalating my case to the CU Medical Center, Anschutz campus. It's not quite Mayo, but it is a research facility that might house people who would be intrigued enough to figure out what this actually is. He is referring me to the Movement Disorder Clinic. I googled them from the car, before I drove away from the parking garage in Boulder. This is the sort of place that deals with Parkinson's and ataxia, so I have no idea whether this weirdness fits in with them or not. I had to spend the day being angry and frustrated and get used to the idea of moving up to this clinic, so I haven't asked for a referral to them yet. Tomorrow, I'll call up my PCM and ask her to set the wheels in motion. I'll have updates later.
No comments:
Post a Comment