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?
A few weeks ago I dreamed that I saw my former rheumatologist, the one who passed away suddenly during the fall. In my dream, he told me to take a vitamin E supplement. I woke up surprised by the clarity of the dream, as well as the normalcy of our interaction. It was as though I had simply returned for a follow-up appointment. I immediately googled “vitamin e lupus” and discovered this study from 2007, which suggests that vitamin E supplementation helps to suppress autoantibody production in lupus patients. (And animal models suggest that vitamin E reduces joint destruction in RA-like diseases.) To say I was surprised by both the dream and the research it inspired is an extraordinary understatement. The whole thing still takes my breath away. Needless to say, I’ve added vitamin E to my daily regimen!
In my waking life, I have been haunted by the parting exchange between my doctor and me during my last appointment. As I was checking out at the front desk and preparing the leave the office, he called out my name and when I turned around, he was studying me with a look of both sadness and compassion. He said “We’ll figure this out.” I must have replied with something in the affirmative and continued toward the door. I turned back one more time as I walked through the door to the waiting area, and he was still watching me, the same look on his face. I remember feeling simultaneously troubled and reassured at the time—like he knew something and wasn’t telling me, but that he truly cared about me. The fact that it was the last time I saw him only adds to the mystery of the exchange. I requested a copy of my notes from his office, to give to my new rheumy, but apart from the blood order and diagnosis codes, there are no notes from my final visit with him.
In the last few weeks, I have been in the process of interviewing for a temporary administrative position at my university— one with more flexibility and more benefits, but also more hours than my current position. On the one hand, it would be an excellent move, career-wise, and it would also be an improved work environment. On the other hand, while I was excited about the position, I was also concerned about my ability to work a full 40 hour week, even if some of that time was spent working from home.
Well, it seems that the universe was keyed into my ambivalence, because I found out on Tuesday that the position won’t be full time after all, and that the length of the commitment would be significantly shorter than expected, at least for now. Though this is disappointing for financial reasons, it has allayed my fears about potentially over-extending myself. I will also have time to work with gifted kids again this summer, teaching creative writing, which I realized in retrospect I had been sad about giving up. So all is right with the world again. Now let’s hope I can keep my disease activity stable enough to enjoy it!
“Between stimulus and response there is a space. In that space is our power to choose our response. In our response lies our growth and our freedom” —Victor Frankl
I’m not sure what has changed in the past few days, but I feel like I’ve gone from a mental space of worry to one of relative peacefulness and acceptance. It doesn’t feel like anything has changed inside of me; in fact, I feel just as lousy as I did last week—the usual MTX gripes and joint pain along with a bonus infection. But something has definitely shifted.
Apparently my new years resolution should have been “clean out and reorganize the catch-all closet.”
Why? Because that’s what I’ve been doing for the last three days. And as soon as I muster the strength (or convince a friend to help) to cart the remainders off to the thrift store, the project will be complete.
I love a well-organized space. It makes me feel like a weight has lifted off of me. No more downing in “stuff,” literally or figuratively.
I was going to blather on about hoarding and anxiety, but I’m sure someone else has already said whatever I was going to say. Probably Martha Beck, in one of her insightful columns for the Oprah magazine. So instead, check out this amazing (hoarding-related) art project: Barbie Trashes Her Dreamhouse (flickr set from the artist here).