STENGTH

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I’ve been taking Aubagio going on 4 years and I am one happy camper. As happy as I can be anyway. I have no noticeable side effects, and it’s a pill I take once a day. No $^*(& injections! My MRIs have been mostly stable. There are no new black holes in my cerebellum or elsewhere. Speaking of my cerebellum, I found this post while looking for something else. I found it enlightening, maybe you will as well. All in all, it seems like Aubagio is doing the trick.

That’s about all we can hope for, isn’t it? Our MS drugs won’t cure MS. The best they can do is slow the disease progression. Any nerve damage that’s occurred, well, that’s there forever. Like the tattoo that was supposed to say “STRENGTH” that really says “STENGTH”, or the mistake you made in 7^th grade that you replay in your mind over and over. Not. Going. Anywhere.

At least it’s not fatal, you have that going for you, right?

Now, I’ve never actually had someone say that to me. Thank goodness because I’m unsure how I’d react. While correct, MS isn’t fatal, it is incurable. The best we can hope for at this moment in science is that we won’t get worse. Even the much-lauded stem cell therapy isn’t at the point of repairing nerve damage. 

So here we are faced with this incurable nerve-damaging disease. What’s worse is that we are literally doing this to ourselves, yet we are powerless to stop it*. Our bodies are attacking the myelin sheaths in our brains. So here comes the immune system saying the equivalent of “your money or your life” to the poor vulnerable myelin sheaths. Of course, the myelin has no money, it’s inside our bodies, so what do you think happens? Our immune system starts munching on the myelin**, leaving us short-circuiting wherever the myelin has been damaged.

Lucky me, I have lesions (damaged or scarred myelin) in my brain, my C-spine, and my T-Spine. My MRIs look like snow flurries on a dark winter’s night. Quite appropriate for a snowflake disease, huh? Next time I’m at my neurologist’s office, I’ll ask for a copy of my MRI so I can show you. If we were playing lesion bingo, I would have a good chance of winning. Though, now that I think about it, that’s probably not a game I want to win.

Oops, I deviated off of my planned path. Again. I had a point I was making, what was it? Ah, yes, the incurable part.

Anyone who has had any chronic condition (chronic diseases are defined broadly as conditions that last 1 year or more and require ongoing medical attention or limit activities of daily living or both***) knows the challenge of living a life while your body wants you to quit trying. It’s not the easiest thing in the world to get out of bed in the morning wondering if you can walk. Wondering if you can do any of the things you want to accomplish.

And yet, we persist. We have to persist against all obstacles. We have to keep trying. 

*No amount of exercise will cure MS, following a special diet will NOT cure MS, taking the latest supplements will NOT cure MS. Maybe it lessens the symptoms for some people, but not for everyone. We are all different.

**This is not at all science-y. It’s what the Discovery Channel would call a dramatic re-enactment. It’s mostly accurate, but don’t take my word for it; I have no letters after my name.

***Source https://www.cdc.gov/chronicdisease/about/index.htm