The last week or so has been quite a rollercoaster, both internally and externally. I gave a lecture to my class a few weeks back and we talked about the word “ambivalence.” Most of my students thought it meant “indifference” but I explained to them that the meaning is closer to “pulled in two directions simultaneously,” that the Latin root means “both strong.” (This was explained to me by a psychology professor years ago, which echoed a passage I read in high school from Girl Interrupted where Susanna Kaysen receives a similar correction from her psychiatrist). And boy do I feel ambivalent right now. After several weeks of feeling optimistic, everything has ground to a screeching halt.
Medical kvetching below the cut.
My rheumatologist died suddenly and unexpectedly of a heart attack last week— the same week I was scheduled to see him for a follow-up on my methotrexate (MTX) treatment. Obviously my appointment was cancelled. One the one hand, I feel like a jerk to be mourning, since I wasn’t particularly close to him on a personal level, certainly not in the way that his family and friends were. But he was the first doctor in a long time to really listen to me, and he gave me hope that we were getting closer to figuring out what exactly was causing my symptoms (Lupus? RA? MCTD?), and how we were going to treat them. He was a kind, empathetic, and caring doctor and just a genuinely nice human being.
As recently as last weekend I was feeling really optimistic about the improvements I’d seen with the MTX– my pain levels were down, my energy was up a little, and I felt like the pendulum was on an upward swing. I no longer feel that way. Whether it was the stress and anxiety of the week or just the natural variation of my disease, the last five days have been excruciating. I found out about my rheumatologist and then struggled to get an appointment with my primary doctor in order to a) get a new rheumatology referral, b) begin the search for a new rheumatologist, c) struggle to actually get an appointment (it took four tries to even have the insurance referral processed, which I had to do before I could get an appointment), and d) have the blood work done to check my liver function and CBC.
The good news is that my liver seems to be fine. The bad news is little more pervasive. With my rheumy’s encouragement, about four weeks into the MTX I had managed to wean myself off my 1200+ mg of daily ibuprofen habit. So much for that. All the ugly inflammatory symptoms are back with a vengeance, including the fiery gnawing sensation in my hands and feet, the skin rashes, the low grade fevers, and the extra 3-5 lbs of water weight that always accompanies a flare. Plus, according to my recent blood work, something is up with my kidneys and my creatinine levels are elevated. It could be the MTX, it could be lupus, or it could simply be a fluke caused by not drinking enough water prior to the blood draw. So I’m back on the ibuprofen, hoping it won’t combine too aggressively with the MTX to beat up my liver, and in a sort of medical no-mans-land about my kidneys until I can get in to see a different rheumatologist, which won’t be for almost another four weeks.
Managing my insurance is another headache in all of this. It’s not clear if the new rheumatologist will be considered “Core” or “In-network,” meaning I may be liable for a $200 deductible plus copay and 20%. And then there’s my $2000 prescription limit, which is going to prevent me from trying any of the biologics unless I can get prescription assistance. None of this is helping my anxiety level or my ability to be “in the moment,” mindfulness meditation or not. Because to be truthful, the moment kind of sucks right now. But I soldier on, correcting papers, meeting with students, trying to work on my own research but feeling fuzzy-headed and discouraged.
I’m waiting for the pendulum to swing back to optimism…. any day now, please.