Sunday, July 4, 2010

An Education

If I'm going to try and teach people about MS, I should probably tell people what MS is, right? Here we go:
Multiple Sclerosis means, literally, "many scars." This refers to the lesions that are created in a person's brain and spinal cord as the disease progresses. It's an auto-immune disease, which basically means that the body is attacking itself. In the simplest terms, MS is when my immune system thinks that the outer lining of the nerves (called myelin) is an outside entity, something it needs to kill to protect me. So it attacks it like crazy. And it eats away at the myelin, causing the nerves to react in all kinds of different ways, like loss of feeling, heightened feeling, loss of muscle power, vision, etc.
MS is diagnosed not by one simple test, but by a collection of evidence that leads to a conclusion. In my case, I had numbness and tingling, which kept recurring in different places. This is the first sign in many cases. After these symptoms recurred enough, my neurologist did a spinal tap to look for specific proteins in my spinal fluid that are present as a result of the auto-immune process. The fact that those proteins were present, added to the other symptoms, led to my diagnosis.
The medicine I take is called an interferon. As the National MS Society describes it: "Rebif is a medication manufactured by a biotechnological process from one of the naturally-occurring interferons (a type of protein). It is made up of exactly the same amino acids (major components of proteins) as the interferon beta found in the human body." Do I know what that means? Not really. I know that it's supposed to slow the disease, but it can't cure it. And it's painful going in. But it works (for me) better than the last medicine I was on. Since everyone and every case is different, some medicines work better for some people. If this one stops working, the neurologist wants me to go on one that I have to take at the hospital via infusion once a month. Hopefully I don't have to do that, because it'll really screw with my social calendar. They're developing an oral medication as well, and according to a friend who has a friend who works at the University of Pennsylvania, the tests for that are going very well. The day I can take a pill instead of a needle with be the best day of my life.
The best things I can do to help myself are take my medicine regularly, get exercise (YUCK), stay out of the heat (I don't know why, but it's universally recommended...heat makes MS worse), and look out for changes. That can be hard sometimes, when a muscle hurts, and I don't know if I actually did something to hurt myself, or if it's the MS. Either way, I just have to wait it out. But knowing what's normal helps to know what's not.
Upside? I've been doing well for a full year now (as of yesterday!) and I feel like I'm getting stronger all the time, both physically and mentally. I find things that make me happy, and I do them. I have a friend to also has an auto-immune (one much more serious than mine) who gardens. There is nothing that makes him happier. And we discuss this all the time: it's the little things that count. You have to find your bliss, and follow it, as dumb as that sounds. So I take pictures. When I can't sleep, when I'm bored, when I'm happy, when I'm sad, I take pictures. It's a little thing that helps me along, and if no one else ever sees them, or likes them, it doesn't matter. Because they teach me something about myself.

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