Sunday, January 22, 2012

Almost forgot I have a chronic incurable disease.

January 2012

Some may have noticed that I've not posted in a very long time and I feel a bit guilty about that since I promised (myself anyway) that I'd document my experience in the Fingolimod trial. All I can say to defend my gross negligence of that task is that I've been too busy living normally to post much about MS. So normal has my physical being become that I often forget I've got a debilitating disease! In other words, the mystery drug has been a resounding success for me, and many others apparently, since it is no longer a mystery and is available to the masses. Here is a brief list of all that has gone right since I started taking Fingolimod (aka Gilenya):

Major reduction in muscle spasms
Regained ability to walk/jog/work out without going numb; subsequent 30lb. weight loss
NO MS-related fatigue, ever!
Only headaches I've had were booze related
Have regained sensation in both feet/lower legs
Vast improvements in balance and coordination
Can go up AND DOWN stairs with speed and ease
No "cold water droplet" sensations
No problems with heat or elevated body temp, doesn't make me numb or fatigued anymore
Have not had a relapse/flare up/exacerbation for almost THREE YEARS (last one March 2009)

I am out of the trial now and have been prescribed Gilenya by my regular neuro. He seems pleased with my progress and talked with me about keeping an eye on side effects (haven't noticed any) and potential complications from taking the drug. He thinks there may be an increased risk for developing lymphoma because of the way Gilenya works. I am NOT stoked to hear that but figure that the benefits outweigh the risks. I have not been this happy and healthy, well ever. My husband and I are taking advantage of this time that my body is working to travel and adventure and DO and GO. Nothing like a few years of "sickness" and relative "disability" to make you remember that you gotta run out and do your living NOW when suddenly you are able to again.

All in all, things are good. I love that my body works and have little celebrations in my head when I'm riding my bike, dancing with friends, climbing the stairs to the top of the Arch du Triomph in Paris... My kids are healthy and happy and smart. My friends are fun, reliable, and stimulating. I love what I do for a living (even if I hate the short-sighted fucks that I work for). Being able to make plans with near complete confidence that I will be able to do whatever I make plans to do is a really good feeling.

In the spirit of full disclosure I feel I should give the list of MS symptoms that I do still occasionally experience:

Fleeting restlessnes in both legs
Rare small spasms in left hand/wrist
Occasionally still "trip over nothing" but I have always been clumsy. ;)

I don't have any of these often enough to think about my disease everyday. I take my Gilenya pill every night without even thinking about why because it doesn't require the kind of will power that a daily injection does. It's just something I do after washing my face before bed and I feel so good that it doesn't even occur to me that I take the pill because I have MS. My biggest fear is how I will react when I do finally relapse again. Before Gilenya I was relapsing every 3 to 6 months and EVERY time it hit me hard. I would "forget" in remission how much everything was a struggle and how frustrated and depressed I had been during the relapses even though they were only a few months apart. Now it has been three whole years! How deep will I plummet by the time the monster catches me again? I can never decide if I should try to remind myself that DOOM is coming or if I should just focus on living for today.

1 comment:

Bald Ben said...

Live for today....
Glad to hear you are doing so well. I often wonder how some of my blogger friends are fairing. Truth is though I, like you, have been very negligent in updating my blog. I have been thinking a lot about it in recent months, but just haven't had the drive. Work, kids, brain draining lethargy seems to have other ideas of how I spend my time.
While I haven't had a relapse in a few years, I have had so many short exacerbations that it can be a real drag. The nature of this damned beast seems to delight in keeping you off balance. (Pardon the pun. I really didn’t mean it.) The worst for me is a simple change in weather can send me into hiding. That’s the real freedom I want back. I will gladly take a limp, if I can go and spend time in the sun again.
Everything that I am taking seems to be working fairly well, but that whole miracle cure thing would be real nice too. I wonder what happens if I try to switch meds around?
Anyway, nice to see you dropping a post. Be well.