My MS anniversary
Twenty-five years ago today, on April 24, 1992, my daughters' elementary school held its annual school carnival. While the girls — Brianna in fourth grade, Megan second, and Andrea first — visited booths with their friends, Jim and I manned the cake walk.
It was a good night.
As we walked to the car to head home, my feet felt like they were asleep. Numb yet prickly feeling at the same time. I figured I'd just been standing too long. The numbness hadn't subsided by bedtime, so I slept with both feet propped on a pillow, thinking that might wake them up.
By morning, they were still numb. The numbness had moved up to my calves, in fact, and a weird and slightly painful sensation of walking on marbles accompanied each step I took.
The day after that, the numbness had reached my knees, the marbles were still underfoot. I called my doctor, who told me it's likely just stress and to relax and everything will be better.
It didn't get better. Each day it got worse. Each day I left messages for the doctor... whose nurse sympathetically relayed that the doctor didn't think there was cause to come in.
By the end of the week, the numbness reached my thighs. Jim called the poison control center, convinced I'd been poisoned by taking too much Sudafed during my recent cold. They convinced him otherwise. Still, my doctor didn't believe he needed to see me, had his nurse tell me to relax and use a heating pad to soothe back and/or stress issues that would surely go away.
By Sunday, May 10 — Mother's Day — I couldn't walk. I had to crawl up or down the steps of our then tri-level home. Instead of celebrating Mother's Day, Jim took me to the emergency room, literally carrying me through the door.
Thank God a better doctor than my regular physician was on call. He immediately ordered an MRI. By Wednesday, May 13, the MRI was read and the several lesions on it confirmed multiple sclerosis ("sclerosis" = lesion).
At that time, one doctor told me I'd never walk again. Soon after, as my vision was failing, another doctor told me I may never see again.
Thank God they were wrong.
Thank God I have the relapsing-remitting form of MS (there are four kinds, pretty much) which means I do okay, then have an exacerbation and some of the effects don't go completely away, then I do okay, eventually have another exacerbation, and so on and so forth. Other forms are far more debilitating.
Thank God I had only a few exacerbations and did okay without medications up until 2008. Thank God that despite the absolute hell my MS became in 2008 then the even more horrendous hell it evolved into in 2014 — mostly on cognitive levels which is scary as <cuss> for a writer — there are medications that kinda sorta halt the exacerbations.
Thank God for insurance for those medications — and copay assistance and patient assistance programs that cover the costs insurance doesn't. (My current medication costs more than my husband's annual income.)
Thank God again and again and again for my husband and our amazing daughters, all who support me no. matter. what.
Mostly, thank God for, well, God. Without Him I would not have remained sane the past twenty-five years. (I know, I know. "Sane" is debatable.)
I don't like to focus much on my MS. I do better if I don't talk a whole lot about it because it seems the more you talk about something, the larger it looms. For me, at least. I'm not ashamed of having MS. It's not a secret. I don't hide it. It just is what it is — and what it is is simply part of who I am, not what defines me.
That said, after twenty-five years of numb feet (and becoming a wee bit more of a numskull as time ticks on), I can't help but share loud and proud about my anniversary. Because — Woot! — I have made it through a quarter century with MS.
And I can still walk!
And I can still see!
And I'm better than most anyone — myself included — thought I might be.
Yippee!
Happy MS anniversary to me! And thank you for reading my much-longer-than-usual ramblings.
(FYI: The original doctor who blew me off was reamed by his superior — an elderly doc who compassionately gave me my diagnosis — in front of my husband and me for the way he handled the situation. Needless to say, I never saw the jerk again.)