Sorry I haven’t blogged in a while. There is this class called statistics and well… it basically just sucks the soul of the person who takes it for about ten weeks straight (along with all my spare time and spoons.) Quarter ends on Monday for me and I will be burning many spoons doing finals, I am writing this on a break from studying for psych. Balancing lupus and college has not been easy. I thank every one of my friends for giving me encouragement, strength and a helping hand when I have needed it. While I could go on and on about college; the real reason why I am posting is because I am now a research subject at the UW (or should I say, still, but just a different study.) I know, I’m hitting it big now… in the science world.
My appointment on Tuesday at the UW didn’t go half bad. I only had some med students in looking at me, two rhuematologists, a nurse practitioner and a researcher. Now that may sound like a lot of people and it can be a challenge to fit so many into an examining room, but I promise I am not dying anytime soon. So just relax. The researcher was out of all of them the most interested in me. To make a long story short, I am now part of a University of Washington research study for people with active SLE on B Cell activity and how those cells act with lupus. What this translated into was urinalysis tests, 21 vials of blood and Katyann almost passing out on the phlebotomist. Some of the vials were for my normal lupus panels anyways but the vials required for research were numerous.
I never have turned away the opportunity to be either in a research study or an experiment since I have been ill. Why? I am totally okay with sacrificing my body to science so that young women in the future never have to go through what I have gone through since the beginning of my health problems. There comes a point where I just don’t care about how lupus affects me anymore and I am at that point. It takes people now to subject themselves to tests and trials to pave the way for the future. I realize this and I also realize that the number of willing eighteen year olds with active SLE is fairly limited. Passing out is a small price to pay for better management of a life long challenging chronic illness. I think so anyways.
To date I have participated in a total of two other research/experimental studies. One was for chronic pain, the other, I don’t really have much to say about. The chronic pain one was easy, “Where do you hurt? How does this impact your life? What would you do if you didn’t have chronic pain?” Simple, simple. Science doesn’t always have to be painful. As for the other… well… sometimes science involves a bit of “Oops that did nothing! Carry on…” Really there isn’t much more to be covered there.
As for how the appointment went other than now being a research subject, fairly fine. I came in with a full malar rash, swollen hands/feet and had a Raynauds attack from the stress of being there (hospitals are not a happy place for me…) All of that was documented and I am to keep my medications at their current doses. Depending on how my white blood count and ANA titer come back may change things. Though I am pretty sure I am just meeting normal managed (not in remission) but nothing horrible is happening status qou. This is good.
May you all have many spoons this week! Psych is calling me back with its tempting chapters on biosocial development. Peace