Thursday, June 28, 2012

Levels of Stupidity

I had one of those glorious good days today, up until about eleven this evening. As I lay here typing this post on my iPad, waiting for the pain medications to kick in and reflecting upon my stupidity. I have few regrets about my activities and actions but I allowed myself in the midst of feeling good to ignore the big bad wolf. This is one of those things about lupus that will eternally bother me. I can't even do everything I have the energy for on a good day and not pay the price for over doing it later on.

This morning when I rose I actually felt quite human. Granted a bit stiff and in need of my morning bowl of oatmeal but I was good. I could have stopped what I am experiencing now before it even had a chance to start by planning my day differently. When I feel good like I did, I tend to forget key lupus things. Like say, not go out in the sun at noon. Even worse: without hat or sunscreen. Prime example of key number one, remember the details. Total honesty, I was setting myself up for failure. After going on three years of having lupus, I should really know better than to go enjoy the first sunny day in WA history. Considering the rarity of having the sun show around here, I don't even remember where my sunscreen is. Stupidity level: approaching bad.

Oh but it gets better!

With feeling like a human today I also didn't pace myself. The second key to survival with lupus is to pace and space out the day. Guilty as charged, I darted from one thing to the next and did not take a breather in between. Having little 15 minute breaks (or longer) of just sitting and doing next to nothing/resting really helps to prolong my productivity and helps me to space things out so I do not over do it. Having the energy to not need these breaks does not mean I should not take them because I will otherwise do too much. Routines help me to take breaks by habit, but I ignored my normal routine today. Stupidity level: almost idiotic.

But wait, I'm not done yet!

As the evening approached I began to feel what I had done to myself. So instead of just taking my heavy drugs then and going to bed... I ignored it. Survival key number three: keep ahead of the pain. Damage control one might say, I even failed at that. When I am up moving and doing I have gotten pretty good at just keeping my mind super busy to help block the pain. Alas, that is exactly what I did. It is like hitting the "snooze" button over and over again on an alarm clock... Delaying the impending doom of having to get out of bed. Now as a result I am in so much pain I cannot sleep. Having energy is such a blessing and a curse at the same time. I just don't know what to do with it. Playing "catch up" is resulting in higher doses of drugs just to get things down to tolerable, where as if I were a good little proactive girl I would have simply swallowed the pills earlier. Stupidity level: rock bottom.

My life today with lupus was an epic failure on all fronts. Proactivity, self discipline and common sense all went out the window. I can't always be good or perfect and this just goes to show how bad I can be to myself when I feel good. Now where is my frying pan? I really need it... Many spoons!

Thursday, June 7, 2012

For Science!

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