April 30, 2009

The Smurf and the Fingolimod Diet

Yeah yeah, I'm in a double-blind study and only a closely guarded database somewhere can say if I'm on real drug or placebo.

I've read every blog I could find written by a fellow lab rat. And I'm a member of the super-exclusive "Fingohead" club. But to date, I have not seen this...

Sometimes - haven't figured out the exact circumstances - 15 minutes after taking my pill, one hand turns blue. More often than not, the right one. It starts at the tips of my fingers. Sometimes it travels all the way down into my palm, but most of the time not. And my thumb is never involved. My fingers don't get cold or numb or tingly. They just turn blue. And let me make it clear: when I say "blue", I mean "Smurf".

This lasts for never more than 5-10 minutes. I've been trying to get a picture of it but haven't been successful yet. By the time I see it happening, track down my camera and get my hands to stop trembling (another MS feature), the blue has faded to the point of, "No, seriously! Look again! It's a little blue!"

Anyway, I've told everybody who needs to be told, but their responses are along the lines of, "Huh. Wow, never heard of that before." [And medical school tuitions cost how much?]

I've decided this medicine I don't know I'm actually on needs to be marketed with the tag line, "Slow down your MS and slim down your body at the same time!" Now, I'm not a large girl, just kind of average. 5'5", 138, Misses size 4-6, ok? But I am not the healthiest of eaters. If it's fried it's mine; if it's got cheese inside it or melted on top, it's mine; and fried cheese...well...

After March 16th, I started to notice some of my favorite foods where tasting different. Not like spoiled or old food, nothing like that. It just tasted...off. Fruits and vegetables were tasting over-ripe. And unappealing. And usually the result is me with what feels like a brick in my stomach that doesn't seem to want to digest for at least 24 hours.

First, it was sushi. Bo and I used to eat sushi once or twice a month. But you know, the economy being what it was - and is - we cut back on expensive restaurant meals and the last time we'd been out for sushi was middle of December. I'd been jonesing for sushi for 2-3 weeks so late March we decided to splurge. I was so excited because I knew EXACTLY what I was gonna eat and exactly how effing phenomenal it was going to be. Well, I ordered my fantasy sushi dinner and it was...ummm...a disappointment. Didn't make me hurl or anything, it just Didn't. Taste. Right. In other words, "kinda icky."

Since then, the Ick list has been expanded to include chicken slices from the deli, Velveeta, bleu cheese, caesar, poppy seed, and ranch salad dressings, bananas, Canadian bacon, bologna, espresso,Thai food, original Krispy Kreme donuts, icing, orange sherbet, Arby's Beef 'n Cheddar sandwich, and sometimes catsup. Not everything on my list seem to have anything in common, do they? They're not all high in fat or full of salt or stuff like that. And yes, it's not a bad thing to not eat creamy salad dressings and Krispy Kremes. But come on - catsup? Orange sherbet? Bananas?!

Items are added almost weekly, which means I'm sitting down to a lot of meals that disappoint...so I don't eat much. And I pretty much dread meals now. So far I am safe with Juicy Juice, Cheerios, toast, peanut butter, scrambled eggs, bacon, saltines and Campbell's chicken noodle soup (the classic condensed one with the red label). Oh, and the Zensation Zalad from Zaxby's.

Now, I can't tell you I'm actually losing any weight because I don't use a scale at home. I determine if I'm gaining or losing by how my clothes fit. And I'll just say, nothing is snug anymore. As I find new things to add to either list, I'll note them here. But, this medicine that I don't actually know I'm on is - I believe - really going to change the world of MS therapies. Dietary changes notwithstanding, I feel better than I have in a very long time. The best part? No Needle Required.


Dana said...

i like the sound of "no needle required."

Mike Cain said...

Aside from the Smurf hands and steadily narrowing diet, it sounds like you're on top of the world. Keep up the good work.

JesswithMS said...

I also have the ever changing taste buds, but had it long before I started Fingo. I found about a month after starting Fingo, it did get worse, but now it comes and goes. Hang in there, hopefully this too shall pass.