Thursday, February 02, 2006


What a stange feeling it is to know that you have a disease.

It was confirmed yesterday that I do have Multiple Sclerosis. Huh. And the only emotional response I had was, "Whew." No crying. No "why me?" No, pity party. I was actually relieved. Finally, there's a reason for why I have this pain and feel the way I do! I'm not crazy! I'm not a hypochondriac! I'm not a whiner!


OK, I'm still a whiner, but not about being sick.

Everyone else was surprised. When one has a test, such as a spinal tap, everyone seems obligated to be optimistic. And I felt obligated to be optimistic right along with them, but I knew what the results were going to be. That's not being pessimistic, it's being realistic. It's just too much of a coincidence. I have a pain in my cheek that runs along the trigeminal nerve, the radiologist who reviewed my MRI said the white spot was consistent with patients with MS, the attitude of the neurologist changed while he looked at my MRI and he ordered a spinal tap, and the optometrist did a peripheral vision test and my blind spots are "larger than she likes to see." The cards were pretty stacked. The spinal fluid just proved what I already knew--I was positive for Oligoclonal Bands and IGG (immunoglobulin) in my spinal fluid. Patient is positive for MS.

So, my friends and family are wonderfully sympathetic and supportive. They are trying deal with the news. I'm ahead of them on that because I've been dealing with it for weeks now. I'm ready with my response that this is not a fatal diagnosis and it could be years and years before it gets really bad. If all I have to deal with is a little pain in my cheek, hell, I'm getting off lucky.

There is something scary. Of all the symptoms of MS (and no one has all of them), the one that upsets me most is loss of cognitive ability. Unfortunately, I think that's one of my symptoms. Not horribly noticable, but thinking back, there maybe some loss there. The most obvious for me is losing words. Now, I know everyone has moments when they can't remember a word. I understand how common that is, but at the risk of sounding like a whiner, it's not the same. I'll be talking to Al, and I come to a word I just can't say. I know what it is and I know what I want to say, but I just can't get it from my head to my mouth. It's more than "on the tip of my tongue." It's in a fog that it appears then disappears into, and I can't get it. I didn't forget the word, it's lost. And it won't come to me later. I can say words similar to it, and eventually, Al figures out what I'm saying and supplies the word for me. Damn. It is so frustrating. And it's very scary. What's the one thing I want to make a living at? Writing. And what's the one disease I get? One that takes away my ability to come up with words.

OK, so maybe I'm having a little pity party. It's really not that melodramatic, but in those wee hours when everyone else is asleep and my mind is racing, this is where it goes.

So, the goal now, besides getting to the MS clinic and getting on medication, is to enjoy and do as much as I can while I'm strong enough to do it. And I better get busy! There are stories to write, countries to explore, Scotch to drink, yarns to knit, and books to read (I'm way behind in my Ian Rankin books).

1 comment:

Jay said...

And don't forget, COOKIES to bake. Like, maybe pumpkin chocolate chip cookies. Yeah, that's the ticket.

And, that Alpaca farm to start. Don't forget about the Alpacas!!!!

Also, remember that those stories, the scotch and the knitting is done best in Scotland.