It’s been nearly four months since I last blogged. I suppose that means I’ve been on a bit of a hiatus, partly intentional, partly unintentional. My personal life imploded in April, and while I won’t go into it here, I will say that some of the issues have been resolved, and some haven’t. I am trying to be at peace with uncertainty.
The sense of uncertainty extends to my health as well. I had a good five month stretch of prednisone-enabled denial, where I was nearly symptom free. It was lovely, but obviously too good to be true, and about a month ago my symptoms started to emerge again. My rheumy had hoped that a few months of continuous steroids would allow the additional Plaquenil/HCQ to take effect, and then we could taper down again. Unfortunately, it hasn’t quite worked like that, and I find myself with considerable pain and fatigue, despite being on the highest dose of HCQ for my weight, and a maintenance dose of steroids plus massive amounts of ibuprofen (and everything else…). So we’re onto the next DMARD, Arava. Or trying to be. My insurance has denied coverage for it, even in generic form, so I’ve spent the last three weeks battling that and also applying for medication assistance through Rx Outreach.
Back in June I gave a talk on children’s literature and illness narratives at the Society for Disability Studies conference in Denver. It was my first year attending, and I have to say that the conference itself was an extraordinary and often joyful experience, though not without some feelings of anger and frustration. I think in some ways it is even harder to have an invisible illness or disability among people with visible and/or mobility-related disabilities. The scrutiny is much higher, and some people can be much quicker to judge or assume that one is able-bodied. I felt significant pressure to “explain myself” and my presence at the conference. I’ll have to write more about the experience in another post.