A Day in the Life: Choices

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Here’s a picture of cute kittens. Just because.


Quality over quantity—that is my choice.

Sero-negative myasthenia gravis. He has to give it a “name” so the insurance company will pay for treatment, but he really doesn’t know for sure what it is. There are, it turns out, quite a lot of us with no-name disease, symptoms similar, though each individual responds very differently to various attempts to treat.

The first drug of choice, Mestinon, failed the risk/benefit analysis after 10 weeks. By a fluke, a systemic steroid injection for arthritis caused a complete remission for a short time. The best two weeks I’ve had in five years. I felt, no, I WAS normal. I could climb stairs without pulling myself up by the railings. I could stand up from a chair and walk without my legs giving out. I could WALK. Really walk. I had my best-ever workout at the gym. I had energy. I could hold my head up, and I could stand for more than just a few minutes. All those things we take for granted. It didn’t last. I’m not giving up.

I know that prednisone causes all sorts of other issues, especially for diabetics. I am only too familiar with the toll it takes on one’s immune system. (I also know it causes hair to grow in inappropriate places.) Prednisone gave my father a relatively normal life for nearly 20 years, but his diabetes was not well regulated and ultimately, the prednisone killed him. He was 79 when he died, not exactly a spring chicken.

So I have to make a choice. Take a chance on the prednisone and perhaps get a “normal” 10 or more years, or fail to treat and live a miserable 20-25 years. If I could feel as good as I did for those two weeks for even just another five years, I’d be thrilled, but to spend the next 20 unable to walk, unable to hold my head up, unable to climb stairs, unable to stand up without falling over, unable to work or create art—that’s not for me.

There is no guarantee that this drug will work. There is no guarantee that I will be able to regulate the diabetes to stay healthy. All I can do is try, and that is what I’ve chosen.

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About Peace Penguin

Just a penguin on the path to choosing peace.
Aside | This entry was posted in A Day in the Life, Loss and tagged , , , , , , , . Bookmark the permalink.

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