The problem with having two (or more) autoimmune conditions is that the treatments for one can exacerbate the other. I have failed Arava (or, more truthfully, Arava has failed me). Now the only option left before going to biologics (which my insurance will only partly cover, plus they have a fail-first policy, hence the endless wait) is sulfasalazine, which may resolve my GI issues and RA symptoms, but could potentially make my lupus symptoms much worse. At this rate, I almost feel like prednisone is easier and safer. What a mess. And why do I still feel like it’s my fault that the treatments don’t work instead of the other way around?
As you may have noticed, I haven’t posted in a while. Mostly I’ve just been busy—working, teaching, writing my dissertation, and trying to having something of a social life. Basically I’ve been playing at being a normal person. And I did a pretty good job at it, too. This weekend though, all the small complaints that I had been collecting over the past few weeks (feet too sore to wear heels, intense morning stiffness, knee pain, fatigue, photosensitivity, GI issues) seemed to snowball together, and now I’m lying on the couch feeling sorry for myself. I like to think I’m getting better at not blaming myself and riding the wave of flare and remission, but it’s still really hard. Sometimes I feel like as soon as I get everything under control and establish a routine, something new pops up to wipe me out again.
Between the Arava and inflammation I’ve lost more than 10 pounds since August, despite still being on a low-moderate dose of prednisone. While for many people that would be a victory, for me it isn’t—I’m already at the low end of normal BMI. The GI symptoms I’ve had recently, which may or may not be from the Arava, have not helped either. I’ve been tracking my stress levels and watching the foods I eat, cutting out wheat and dairy, but it just seems to be totally random and unpredictable. I’d like to exercise too, but I don’t have the energy (yes, that old chestnut). And it’s hard for me to take the compliment when people tell me how good I look, since I feel so unwell and unfit inside. I suppose I should be pleased that my make-up skills are good enough that I don’t look like death warmed over.
All this makes it sound terrible to be me, but that isn’t really the case. I’m just frustrated with my body. I really am grateful and content most of the time. I have lots of love in my life and people who are looking out for me; I have a job that I find satisfying and fulfilling; I have my academic work—which I love, even if academia makes me a little crazy sometimes; I’m financially stable and I have decent health insurance, though I often have to fight to get what I need; and I have various volunteer and social commitments that keep me engaged in my community when I’m able. It’s a good life, even if it’s not the one I thought I was going to have.