December 01, 2005

So Now What?

I have the diagnosis and now the real adventure begins. Well, it began awhile ago. I was diagnosed in the fall of 2001. (I hear the 2001 music even now!) And it has been an adventure ever sense. Not always a good one.

Those days I wake up feeling like something the cat wouldn't drag in, take my cortisone, and within 20 minutes become a human being, are wonderful. But to be honest they are few and far between. At first, they were more common than not, but cortisone has a way about it. It is a double edge sword. It is necessary for life, yet having to take it, even as a substitute has side effects; nothing works as well as Mother Nature.

Four years later I am fighting cataracts and I find it frustrating to be dealing with a sense of visual loss at such a young age. Now I know that there is surgery for this but that is also something someone with Addison's doesn't enter into lightly. Many doctors feel that you only have surgery when there is no choice. Vision is a fine line. For now it is an inconvenience and I don't have to think too much about it, but someday it will come up in a way I can't ignore. I don't look forward to that.

The other side effects of the cortisone have been bone density loss, susceptibility to illness, vulnerability to accidents and simple things that don't slow most people down and the unseen problems of heart disease, which I don't appear to have, but who knows? I have shrunk two inches in the past few years. My spine gets shorter and shorter as the disk space narrows; cortisone only accelerates that process. But without the cortisone, I would only live a few days and I guess that would be considered an acceptable trade-off. I wonder if I will end up looking like a hobbit.

On the plus side, my nails are like they used to be. Hard, strong, growing... hair is thick and looks great, and I can time my cortisone to match my schedule. Being an artist, I can work the hours I want, so I get up when I please and go to bed when I please and I don't have any problems with my schedule because I control it with the regularly timed doses of cortisone.

But people with Addison's, or Addisonians, have other problems. We are more susceptible to other autoimmune problems. My others seem to be Celiac and Meniere's Disease. They both started recently. I'll talk about Meniere's next time. I am so very tired and I haven't even begun to go through the list of what this disease has cost me.

Anyone who thinks a normal life can be lived with Addison's just doesn't get it. They have never had it, never known anyone with it, and don't care to learn any different. Some day I'll go into some of the facts about President Kennedy. He got it. And I just don't know how he ever did what he did with what he had.

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