MS took me as a child bride in a land where divorce does not exist; we live in the relationship cycle of violence together. I do not like to be told what I can't do, so I keep cooking (http://ragstodishes.wordpress.com), cleaning and making art. I've lost 100lbs, started doing yoga, worked for one of the world's largest companies and bungee jumped off a 885' tower. My family and friends are incredible and I am a lucky person, incurable disease or no.
The onset, as I thought it, was a hard, fast week of total disability that left me reeling. I was misdiagnosed at one ER, send home with a "viral labyrinthitis" Dx at another - I had no insurance, so that's all I could do. After a year of PTSD, I just went about life with the understanding that my vestibular nerve was permanently damaged, and there was nothing I could do. After falling and losing my vision to a blurred mess while mowing the lawn a couple weeks ago, I ended up at the ER with an MRI and lumbar puncture. Hindsight and research suggests it was vestibular neuritis.
I am using the injectable DMD Betaseron, and so far the effects have been mostly tolerable and, well, interesting. It is incredible to me, still, how MS can just pop in and out of my day with no warning. Worse, now, because my body is having an intensive dialogue with this mystery burning potion it gets hit with, like clockwork, every 48 hours. And now I want to give it more? The whole dramatic shebang makes me feel a little like a spectator at a metaphorical Coliseum within myself.
My mom and I have speculated about those "night terrors" I used to have at 14-15yo, and how, again in hindsight, the possibility of their being a signal of this condition's beginning. I think we both thought in very somber terms, with different memories, about those nights I would wake screaming, paralyzed through my pelvis and experiencing a pain much like thousands of burning needles. Because it was in my pelvis, that's when mom started taking me to OB/GYNs. Back then, we found out that I had PCOS (Polycstic Ovary Syndrome), and the pains were thusly forgotten (once they stopped) as possible cyst "strangulation." In hindsight, too, I imagine the painful waking paralysis that happened occasionally between the spring and fall of 2000 might not have just been "all in my head" and a sign I was inheriting some manner of genetic psychological disorder. Ah, college.
...As you can see, SO much makes sense in hindsight after getting a diagnosis like this. But even thought hindsight is easy, foresight is pretty much impossible. MS is as unpredictable as the pages upon pages of user-driven input in the Symptoms area here. It's hard to swallow the unpredictability of the day-to-day on such a personal, internal, "you-should-be-able-to-trust-your-own-body-not-to-do-these-things-to-itself" kinda way. But once you move past that, you kinda realize it's neither hindsight nor foresight that you need to rely on. With both so easy in which to lose yourself, and your reason, completely, it turns out that insight might be what I need to work for/focus on.
I just want to know what my body's doing right now (hello, intermittent bundle of pelvic numbness!), whether it needs treating (has lasted more than a couple weeks or has worsened), and what's for dinner tonight. I am looking forward to routinizing the hell out of this beast, even if it's by just exhaling and letting it do what it wants aroundthe rest of my life. I am already doing all I can by injecting interferon beta-1b every other day, being informed about the condition and treatment options, and living as healthy a life as possible.
MS and I have signed a contract on this; it's binding (so to speak :).
Aug 06, 2008
Mar 15, 2013