So this week it was finally diagnosed. My doctor read my spine juice and diagnosed me with Multiple Sclerosis.
There is some reason, and nobody quite knows why, that my body decides to attack my nervous system and eat away at the myelin
It was scary when they first said I might have it. It was mostly scary because I didn’t really know what it was. But I’ve learned a lot more about it since then, and it seems like it’s something I can live with.
They have super-duper awesome drugs for it now. I’m taking copaxone. I had my first chance to inject myself with this stuff yesterday. It hurt, I’m not going to lie to you. It didn’t hurt to put the needle it, but it stung for the first 15 minutes or so and then it felt like a bruise the rest of the day.
But they say that it doesn’t hurt so much over time, that your body gets used to it.
Chris thinks i should inject it at night, and then maybe by the time I wake up it won’ t hurt anymore. I’ll try that. In fact, I’ll try that tonight. My first unsupervised injection happens tonight. Oh, yeah, you have to inject yourself with this stuff every day.
Between me and my diabetic cat, we will be the house of needles.
Check this out, though. The copaxone is a lovely drug. And I have lovely medical coverage. Kaiser is quite the comprehensive HMO. 5 bucks is what I pay for a months supply.
But Copaxone costs $1693 for a month’s supply. Yes, that’s right. One thousand six hundred ninety three dollars. That’s $56.43 per shot… and $20,316 a year. Holy God!
I’m calling it my medical bling. I will not be taking medical coverage for granted anymore. Not for the rest of my life.
I am feeling very blessed that I have the most stable job I’ve ever had, probably the most stable job it’s possible to have in America in the 21st century. My boss is the best boss I’ve ever had. So, I don’t feel insecure.
By all accounts I have a super light case of the MS right now. And I’m going on the drugs that are supposed to keep it that way.
I thought about not telling people. I mean, maybe people would be all weird. I wouldn’t have to tell. Looking at me, there is no way to tell that anything is wrong with me.
Actually, all the million tests they did on me to diagnose show that I’m a picture of health. Low blood pressure, low cholesterol. The only thing wrong with me is that my body is trying to eat my brain.
Isnt’ it ironic?
Well, MS doesn’t shorten people’s life. Doesn’t kill you. Heart problems and cancer can kill you. I got a different kind of disease.
Anyway, I thought about not telling people. But then I thought, well, why not? I’ve always been an open book. The benefit I might reap from people not knowing seemed slight in comparison with the effort it would take for me to restrain from talking about it.
Plus, I read that it’s protected under the disabilities act…and I can’t get fired for having it.
In last month’s issue of Neurology Now (the only magazine in the nuerology dept. lobby..I’m quite up on it now) one guy did get fired for having MS….he was blind in one eye…But he was old, and that was before hmankind advanced enough to have laws against being mean to people.
Yes, and one of the first things I did when I heard I might have this is tell a few close friends. and then it turned out that almost every one of them knew somebody that had it. And that that person had been diagnosed, scared, and then went on with their life.
If I tell people about this, when another person gets diagnosed and goes to tell their nearest and dearest, those people might know me (or read this blog). That person might get some comfort from knowing somebody who is doing okay.
It’s only fair. That’s what living an open life is for…To be an example to other people of what happens.
It’s been an exciting month.