I am in the middle of a relapse that began mid-October, a little over a month after getting my MS diagnosis. It started in my right hand and quickly colonized my right side – arm, torso and even boob (sorry, breast, for those who prefer the clinical term).
The first exacerbation (technical term!) in September was in my right leg. I wasn’t expecting the new spot, but it has to do with where on my brain and spinal cord I get the lesions that cause the signals to get hung up. I know I’m dumbing all of this down terribly, so I hope I’m not being inaccurate.
The best way I can describe it is like when a part of your body falls asleep, but it goes beyond just being merely annoying and into excruciating territory. The affected parts are numb and unwieldy. They feel ice cold when the rest of me is on a hot-flash level. And it never ceases.
My fingers feel like chubby little sausages that can’t do basic functions like grab, type, wipe, button or pretty much anything. Good thing I’m a southpaw or I’d be screwed right about now, because I’m still working.
And I recoil from touching pretty much anything, because it sends shooting pains across the neuropathways (not a technical term, natch). Oh, and it feels like my fingernails are falling out. Fascinating, really, if it wasn’t me going through it.
So I asked my neurologist for steroids, the oral variety so I wouldn’t have to go back to the hospital. Which amounts to 72 pills in 72 hours. They’re small little buggers, so I’m downing them like the gritty, nasty Tic Tacs they are.
They’ve mitigated my symptoms somewhat, but not to the extent I’m happy with.
But in a way, I feel lucky. I’m now on Betaseron, one of the most bad-assest MS drugs out there (more on this in a later post). I haven’t been on it long enough for it to really kick in yet, but I’m confident once it does I will be in remission for a long time (power of positive thinking and all).
I am grateful to be diagnosed at a time when we know so much about this disease and have a variety of treatment options.
Just 25 years ago, MS patients didn’t have these drug treatment options. They had to endure monthly body-ravaging steroids via IV as their only form of relief.
And I just have three days. Seventy-two pills.
11 thoughts on “72 pills in 72 hours”
Thanks for describing what you’re going through in such detail. I know that sounds strange but it helps me understand your illness a little better. And steroids kick butt generally so here’s hoping that 72 of them will get you back on track very quickly.
I would never try to ‘relate’ to what you are going through. I have had way too many well-intentioned people say something that left me wanting to claw their faces off. Leaving me spinning because I have no idea what is going on in my ‘nether regions,’ incredibly pissed off because this person will not just SHUT THE HELL UP, guilty because they are trying to be nice & just wanting it all to go away.
Point of my story? Thank you for your honest depiction of what you are going through.
I don’t know if you remember but a year after my hysterectomy at my follow-up visit they found more displasia (Cervical displasia without a cervix? WTF?). I ended up doing chemo for 6 months.
My world was off-balance in ways I didn’t know were possible. One million well-intentioned people & not a single remark that made me feel less alone. Which in turn made me feel more alone.
I can’t know what you are going through. But I do know what it is like to have a body that is an enigma. An evil, horrible, beautiful enigma. Source of amazing pleasures & incomprehensible horrors.
Thank you for providing quite a few remarks that make me feel less alone.
Thank you! I’m so happy that we have opened a dialogue and are growing closer that I don’t even care that it took this MS thing to do it. I love your fierceness and take so much inspiration from how you put your thoughts out there.
I heard about your diagnosis the usual way (Doug told my husband who told me). I’m so sorry is the kind a way only someone going though something similar can be. I know that there are some basic differences between MS and Parkinson’s, but the symptoms at times are really very similar. It’s frustrating being thrown into a world where every little thing you do is suddenly difficult and some days impossible.
If you want to talk just email me. I’ll send you my phone number.
Have you read about the Spoon Theory? I think it was written by someone with lupus but it can so easily apply to any of these energy-zapping diseases.
I would love to keep in touch. I know (through Doug, of course) what a strong person you are, and I admire your tenacity. I have a feeling I can learn so much about so much from you. And it helps that we like the same music, right? We can rock our canes together at White Water!
Hi, I just found your blog from Brass and Ivory. I’ve enjoyed reading. If you want to follow me back I’m at jodibeansblog.blogspot.com
Thanks, Jodi. I will add you to my blogroll, once I get that set up, finally! Glad to have a fellow fighter to share things with.
I’m in similar shape– good description of the sausage fingers– but without medical help! Stay strong!
Oh, the fingers! They are so clunky. It takes me three times as long to do normal activities with my right hand now. Hang in there!
Just wanted to say hi and let you know we’ve been reading your posts… and I’m personally wondering why you’re on the tech side of the paper when you’re such a damn good writer!
Seriously, I love reading your blog. It’s honest and it’s all you. With your strength and optimism, and all the medical advances out there, I know you can beat this sucker into remission soon. In the meantime, you’ve got the Krupa contingent rooting for you up here in Chi-town!
I miss you and hate that we’re so far away!!!
I’ve just come across your blog – I’ve only read two posts and you’ve managed to make me laugh out loud twice 🙂
I was diagnosed with MS about 3 months ago. The symptom trajectory you describe here could also be mine. I, too, am finding the neuropathic pain (and, in my case, feeling like my skin’s on fire) very curious. I feel almost outside myself examining these weird things that are going on in my body, except, I’m inside it. Thanks for articulating the feeling so well. I hope you’re doing okay.