December 16, 2010
"Well, it looks like you've just gotta live with it...."
The thing with having MS is that you never know if a new crazy thing going on with your body is a transient (with luck) sign of your MS, or if there is something else wrong ticking away in your body. After all, a ms body is, as we say in the fiction game, an "unreliable narrator". It makes one feel a bit of a neurotic.
I remember being in agonizing pain for several months, thinking it was just fibromyalgia, only to find I was suffering from bursitis in my hips and a torn rotator cuff. I mean, really. One night a few months ago, I had agonizing pain down one side and thought it was a muscle spasm, hopping in and out of the bath several times to relax the muscle and wondering why it wasn't working. Well, it was a kidney stone, so no wonder.
Now I have lucked into an excellent nurse practitioner who actually believes in preventive health care. She has sent me for various tests and picked up all sorts of interesting things, none of which are acute enough yet for the people she refers me to to find interesting. So I am in the bizarre situation of waiting to get worse.
Which is pretty funny when you pair it with the MS thing of "going to get worse". So I am under observation for my kidney stones to see if they grow any bigger, am waiting for the gallbladder attack to demand removal of my gallstones, and now just returned from a rehab doc who looked at my knees (and my insurance) and said, "hmm. Well, they don't look too bad - even if you can't walk on them reliably. So let's just leave them, shall we?"
And she explained that the reason my knees were malfunctioning was that my hips were weak. This after months and months of squats and exercises of the hip variety.
So I suppose this is where the rubber of my body hits the road of the MS. I remember early on going to a physiotherapist because one leg remained weak despite exercise. I guess the exercises are helping me stay relatively okay but not really improving much.
I just wish, sometimes, that someone out there would say to me, just once, "Well, I've got JUST the thing for that. Let me go get it and in a few minutes you'll feel as good as new!"
No wonder people are flocking to CCSVI despite the dearth of positive results and the gradually accumulating negative outcomes. We're just so tired of hearing, "Well, it looks like you're going to have to just live with it."
Unfortunately (and here I would like to add "Merde alors! piss piss piss!" as I do in situations that are fraught with disaster), I think they may be right, and we will just have to adjust to our bodies gradually getting worse every day, until they become bad enough that they become interesting.
And hope that we stay boring for just a wee while longer.....