How stupid do you have to be to pass up the opportunity to take a nap when you've been ordered to do it every single day? It has been four days since the doctor told me to get a solid nap every day, and I have only succeeded fifty percent of the time. I moved very slowly all day, but when it came to closing my eyes, I could never quite manage it. I was lying in bed texting, playing with Athena and Rabbit, and cringing every time I moved even slightly. Three and a half weeks now, still no real relief for the pain in my hip. I haven't been prescribed any of the hardcore immunosuppressants yet. It's possible that I will have to wait until then to knock out the rest of this pain and lethargy.
Today brought in a new symptom, that is really an old one. I had a lot of tightness in my chest that just doesn't want to go away. It isn't alarming pain, just heaviness that makes it uncomfortable to lie on my side (yet another reason my nap was a fail today). I remember being a teenager and hearing one of my classmates complain of her "pleurisy," and for a few years, all of us girls would copy her terminology every time we had a stitch in our sides from exercise, less than optimal breathing from a respiratory infection, or any other random feeling in our lungs. After a while I started thinking of it as one of those things that young kids think they have to sound dramatic or to get attention, kind of like that phase when every kid thinks they have scoliosis because they checked for it once in grade school. Now here I am with a new diagnosis of a disease that actually uses that word to describe one of the symptoms. I'm having a hard time reassessing the idea, and wondering whether I should go back and apply it to all those times when I did have trouble breathing, from tightness or heaviness in my lungs. Maybe I should stop thinking we were just being junior drama queens back then. There is so much I have to rethink now.
I'll be going to give more blood tomorrow, for those follow up tests. There are a couple things that have to be ruled out as well as markers that must be quantified. I learned today that if an active flare up is not happening, then these markers may not show up at all. So I guess it's a good thing I still feel so crappy. That stuff must still be in my blood, right?
I am ready to go ahead and start the medications, but I understand my doctor's caution. She doesn't want to put me on any of these rough drugs if it turns out I'm only in "pre-lupus," or if last week's results showed a false positive. I can agree with that. But after I've had all these days to review and put fresh eyes on my life, I seriously doubt that I'll get a report of false positive. I allow that it's possible, but highly unlikely.
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