So, the big controversy in MS is whether or not RRMS is an accurate title for my brand of the MonSter. Technically, there is no appropriate title for any form of MS, but I kind of like the hope that relapsing-remitting brings to mind.
Acording to Dr. Payticia Coyle, Founder and Director of Stony Brook MS Comprehensive Care Center, "MS does not remit and the out dated term causes many people to delay taking medication,"
I understand the logic behind her explanation, offered in the the link below' but I fear that changing the name offers a less positive aspect to a horribly negative disease. Sometimes in life, we just have to color the truth a bit. It's a psych game, I know, but we do what we gotta do.
The proposition is to eliminate the word remitting from the title or RRMS. So, now I have relapsing MS.
Nothing hopeful about that.
In a world of negativity and despair, we need all the positive we can find. No, I do not want to be lied to (our Presidential nominees do enough of that), but I would like hang on to the hope that MS is not my forever friend. Why can't we label the MonSter like our favorite wing sauce? If that is the case, I would order up Mild on a good day.
I know it sound silly, but at least it creates images of culinary distraction.
Read the article and make your own decisions. Maybe I am over-reacting. Or maybe I am just sensitive to the possibility of yet another part of me being deleted. MS does that to me every day, Deletes something. RRMS has been a recognized part of my life since 2001 and I have finally come to terms with that part of my character development. To change that label would be like changing my eye color.
One thing about research and discovery is that we continue to research and discover. And it's not all negative.
Check out this blog. When Ian's disabilty deemed him incapable of working, he found a place for his positive spirit. Now, if that is not remitting, I don't know the definition of the word.
Since we're on the topic of positive, remitting forces...Guess what today is?
Ampyra 8:14 is back!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I changed insurance companies (actually reclaimed my PEIA membership status) and I can now afford this wonderful drug again.
So, we just experienced day one (again) together.
Well, I must ready myself for the day. I might even buy myself a new knitting needle to celebrate!
Stay cool out there,