Monday, February 20, 2012
I can't really spill the secrets of this trial, other than to tell you that a small # of people across the U.S. were asked to be a part of a new drug trial for a rare neuromuscular / neurovascular disease. Only a handful of those were accepted to the trial (myself included).
I packed the necessities: Protein bars for emergency meals, comfy clothes for daily tests, lipgloss, and my monkey slippers. Oh yes, that last one was the most important part. Gotta add some silly to the serious whenever possible, right?
There are 4 of us in this particular trial. We are the second group. I had never met anyone else with my disease, so it was strangely special. We range in age from 23-77 years old, but share a few characteristics. One of which is that we are all very pale, (since we cannot be in the sun), and are very red on our hands and feet from inflamation and pain. See, I would like to describe us gals with skin likened to vanilla yogurt, but vanilla yogurt has a bit of color to it (and we are pasty white), so I opted for the Greek yogurt description- adding in some cherries on top to reflect the color of our appendages : ).
Also, we all need to be in cool temps at all times, like yogurt! Yes, we are a tasty group...
We are staying in a very nice research facility run by truly kind medical staff. When I was informed that I had been accepted into this trial, I was worried about the food situation. 2+ weeks of meals NOT prepared by myself (or my wonderful man) left me a bit stressed.
How on earth was I going to eat healthy?
Is green jello considered a fruit?
Does bad coffee help ween one off caffeine?
Is there a secret plan in this? Aack!
Thankfully, the facility directors live a very clean lifestyle. Phew!
We're talking organic roasted chicken (happy birds!), sprouted grain bread bursting with life (literally), loads of fresh produce, etc. They even make their own almond butter and freshly juiced yummy things. I am truly truly blessed.
My worries of being assaulted by deep fried unidentifiable protein and a side of tater tots were laid to rest. Yeehaw.
The only serious bummer is that I am the most extreme case that the drug company has seen, so I actually need to be in much cooler temps than the rest of the group. My room temperature is a a solid 60 at its warmest, so the other gals feel it's too cold for them; their room too warm for me. So I am alone most of the time in between tests and blood draws, and secretly jealous of the laughter and conversations I hear from the other room : (.
If I were antisocial, this would be great since I have an entire wing to myself: big tv, sofa, and a room with 4 beds. If I wasn't in pain, I'd probably fulfill my childhood fantasty of hopping from bed to bed with abandon. But hey, maybe this drug will work, will give me back some normalcy (aside from being a complete GOOFBALL, which no one can prescribe me a drug for, HA!!!), and then I can actually jump on those beds like a 5 year old, right?
Coming to Spark last year helped me realize the bridge between my pain and my emotional reaction to that pain. I had allowed my pain, stress, etc. to reign over my daily life, and wanted so much more. I truly have gotten so much from Spark, and my mindset has changed for the better. Hoorah!
Eating better and learning to work with what I've got has brought me to a much better place all around, even if it still is a daily struggle.
I might not be perfect, but parts of me are fantastic right?
God willing this drug trial is a success, and those other not so cute parts of me will 'cute up' a bit more.
But don't expect the goofball mindset to ever fade, it will only brighten.
Monkey slippers for all!