Nurse Jane - Albany Medical Centerc 2006 Curt Miller
Curt Prepping for Apheresis - Albany Medical Centerc 2006 by Jane
The Daily bLog
We've got this down to a science. And it's good science, too. The apheresis treatments have given me some of my life back. I am able to predict that I will feel stronger by the next day, be able to eat foods that I normally couldn't.
I saw the very first person, other than myself, with MG this morning! I've never laid eyes on another human being with this disease (I think I knew a dog with it once, though). I overheard the woman in the bed next to me and got some clues she might be a sufferer, too. I approached her as I jumped off the bed (I always jump out of bed...makes the nurses twitchy, though) and asked her if she had it and she said "yes, you, too?" "Yes," I said. "You have a thymectomy yet?" "No, and I'm not going to. Nor will I even have a CaT scan to see if I have a thymoma. I couldn't care less. There's no science behind the value of thymectomy." Her next words floored me: "I know, but you should have one anyway."
I asked her if she had had a thymectomy and she said she had, a couple of years ago. I asked her why she was having pheresis. She indicated she still had tremendous weakness in her arms and needed it routinely, every two weeks. I asked her why she was pushing me to have a thymectomy when she was living proof it didn't always work. "Well, you've just got to have it...and you're in worse shape than I EVER was." Then she asked me where my driver was and I told her I drove myself. She was incredulous at that comment. "Well, where are you going, home?" "No, I'm going to work now." "How can you work?" "I'm a tough son-of-a-bitch," I said. "You can't do that," she retorted. "Watch me!"
Turns out she is a big part of the local MG support group (which I don't attend because I'm too busy). I know now to stay away from them because they, too, will push thymectomy. She made that clear. She's also going to pray for me that I have a thymectomy and slow down.
My energy and determination are what enable me to survive with this disease. Everyone who sees me says I'm worse off than anyone they've seen, yet I amaze them with what I accomplish and the energy I have.
"It's in the head," I said. "I'm determined not to let this, or anything else get in the way of my life." "I intend to burn the candle at both ends and keep doing everything I have been doing."
Friends, I really don't appreciate the way MG patients PUSH thymectomy. In fact, I'm really offended by the whole thing, everywhere I turn, even unsolicited comments. Now I'm so stridently determined against it that I don't care if I drop dead from not having it. I called my doctor just now to tell him I will never consider one and that I will not spend $1,300 on a CaT scan, either, and to NEVER discuss the issue ever again with me. He won't.
