This past Friday I made my way back to see my rheumatologist at KU Medical Center. The guy is fantastic and really knows his stuff. As far as finding a way to reverse my condition and push dermatomyositis into remission, he may be my single best shot because he has seen the condition a couple of times before. As a reminder, I hit the genetic lottery with a disorder that affects fewer than 20,000 worldwide…so finding help familiar with it has been a challenge. Additionally, even though there are doctors who have dealt with it before, there is no specific treatment for myositis, and so everyone responds to different medications and dosages in their own way.

I got a chance to update him on the last few weeks...the bout with bronchitis, the stress on my body, the duel infections and the new flare resulting from that sequence. We spent the next hour looking to match previous medications and treatments with changes in my symptoms to figure out what combination would help most quickly.

The best option is to return to regular infusions, starting with something called Rituxan which is a type of chemotherapy IV medication. This is the heavier hitter of the two infusion options, with two sessions needed over two weeks, but only twice a year. If I do not respond in a timely enough manner to the Rituxan, I will also restart IVIG, a type of plasma infusion that is designed to work much faster, but the effect only lasts for about three weeks before needing to get it again. Since IVIG takes five days in a row of treatment, 6-8 hours each day, I have to keep an IV in my arm and wrapped during that time. The process is impractical and expensive, but if necessary that is where I will be. I’m only waiting on the infusion centers to get back in touch with me.

Meanwhile, I am still a student foremost. I am working on completing my last semester and then discovering what the rest of year in my life will look like. Sometimes it’s difficult not to get upset about how my book has started to change, but most of the time I remind myself that my story is still being written. I just happened to come across a really suspenseful chapter. What comes next? I can’t wait to find out.