I haven't written in so long that I actually forgot my username - never a good sign.
The truth is, though, that I've struggled to see the positive aspects of things lately. I write to feel better about stuff - to write myself out of a funk. Lately, though, whenever I pick up a pen (or sit down at the keyboard) I write myself into the exact same place that I started: a little too deep below the surface to see the flowers or the fertilizer around me. This place is dirty and dark, and whenever I climb a little closer to the top, an unforseen swine takes a dump on my head.
I saw my neurologist last week. He confirmed what I already know: things aren't going the way we planned. So I got an MRI to see if there were new lesions on my brain or c-spine (whatever the hell that is), and there aren't. That sounds good, right? - no lesions = no new symptoms. Or so I thought. But the truth is that there are new symptoms. And while I manage to pinpoint an immediate catalyst to blame for every new physical malfunction, the catalyst ends and the deterioration doesn't. I've lost a little coordination in my left hand now (previously my only symptom-free limb), and my right foot and calf have started to go completely numb whenever I swim. Last week I tried to cook while in my wheelchair (I managed to burn pasta), and tried to vacuum on my knees (equally ineffective). Curious as to why I have these new problems and no new lesions, I emailed my doctor a hastily written diatribe of my confusion.
This morning he wrote me back:
Kate - MRIs are only sensitive to inflammation as occurs typically in relapsing MS, I believe that your worsening without change on MRI points towards axon damage from chronic demyelination as is seen in secondary progressive MS.
I guess I knew that already. Lord knows it's been a good seven years since my last "remission", but somehow seeing the words secondary progressive written stung a little more than I thought they would. I rested my chin on my hand and stared at the words on my laptop until my 2nd period students began to trickle in. Then I swallowed the lump and all the other things that threatened to come out of me, and taught for the rest of the day (with a little less patience than usual).
I finally weaned myself off the overly-numbing antidepressant last week.
My timing sucks.
3 comments:
Well, for what it is worth, I'm glad you decide to write another blog entry (yay).
I can't think of anything to say about secondary progression of your MS -- (I don't really know what that means). Hopefully, you'll get out to another happy hour and I'll buy you a beer.
I don't have MS, but I have lost a parent and a best friend and this entry is -to me- about grief. Loss is difficult to explain because it's not just one loss, it's a thousand losses...and the only word that for me comes close to expressing the feeling of loss is disappointment. This is deep, deep disappointment. I feel for you, as much as I possibly can, though I don't even know you. The grief will dissipate eventually but (in my humble opinion) you've just got to let the grieving happen. This isn't self-pity. I've read enough of your posts to see how this is different. I promise you, this grief will lessen. I promise you, it will not always feel this way...it will get better, even if your health does not. And you're right, more often than not, grief and meds don't work. BTW, Thank you for writing your posts and giving me a lot more insight into what it's like to be my friend's mother, who has MS. You're a gift.
Good luck getting people behind this one. Though you make some VERY fascinating points, youre going to have to do more than bring up a few things that may be different than what weve already heard. What are trying to say here? What do you want us to think? It seems like you cant really get behind a unique thought. Anyway, thats just my opinion.
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