I’ve been dancing since I was three years old. That’s over 90% of my life. Around the time I turned 10, I decided that what I really wanted was to be a ballet dancer. I spent hours every day in dance classes, not just ballet, but other kinds too, and I put every once of energy I could find into it. The first time I had a major injury, which in retrospect was probably a disabling flare of inflammatory arthritis, I was 12. My knee swelled up and the soft tissue began to calcify, so I had to take 6 weeks off from dance. I didn’t mind getting excused from middle school PE class, but having to sit out ballet class was the worst. I had just been allowed to start wearing pointe shoes the year before and it had been one of the proudest moments of my life.
|Dancer’s Shoes by Neville Elder|
Whether you’ve seen Black Swan or not, you probably know that ballet is a punishing art form, calling for an incredible amount of work, dedication, and control. The body standards for professional dancers are harsh and unforgiving, and many many dancers admit to controlling their weight through unhealthy means like laxatives, heavy smoking, and disordered eating. The funny thing is that I never fell into those habits. I was naturally thin, I had strong muscles, innate musicality, and I could forget myself in the challenge of a dance class like nowhere else. My freshman year of high school I was in a production of the Nutcracker with a local professional ballet company and I idolized the older girls who danced the principal roles (while also working on college degrees— I remember them reading psychology textbooks backstage between dances). A year later, I got sick again and then went through a growth spurt and wound up at nearly 5’10”. I knew I wasn’t going to be the next Suzanne Farrell, so my ballet career took a backseat to my interests in theater, music, and writing, but not without a great deal of mourning. I’ve continued to take ballet classes on and off as a adult and it’s one of the things that I’ve missed most during the past 9 months that I’ve been acutely sick. Dance requires and engages every ounce of my attention and creativity. It makes me feel alive and grounded in my body in a way that few other experiences do.
The girls in the video below describe their techniques for “breaking in” their pointe shoes. I had my own technique, involving rubbing alcohol and a lot of bending, plus tape for my second and fourth toes and a special way of sewing on my elastic. In particular, I like that the video shows the reality of dancers’ feet. The irony? Arthritis has done far more damage to my feet than ballet ever did. I now look like I have the dancers’ feet I might have had, but from autoimmune arthritis, rather than years of classes and rehearsals.
In looking for references to Suzanne Farrell, I discovered that George Balanchine’s fourth wife, Tanaquil LeClercq, whom he divorced to try to woo Farrell, was struck by polio at the age of 27 and paralyzed from the waist down, ending her dance career. The Wikipedia article about LeClercq describes the horrifying irony (in retrospect) of her first dance with Balanchine:
When she was 15 years old, George Balanchine asked her to dance with him in a choreography he made to be performed at a benefit for a Polio charity. In this ballet, Balanchine was a character named Polio and Tanaquil was his victim who became paralyzed and fell to the floor. Children tossed dimes at Le Clercq, whereupon she got up and danced again.
|Tanaquil LeClercq, 1947 by Irving Penn|
I suppose none of us is immune from broken dreams and lost opportunities, with or without chronic illness. But life goes on (I hope), becoming rich in new ways if we can be open to it. I would, however, prefer no one throw dimes at me during the process.
I’ve been a little blog- and twitter-avoidant for the past week or so. Partly because I’ve been exhausted in between being busy and being sick, but also because, as I mentioned in my last post, I had reason to believe that one of these chronic illnesses I carry around with me had decided to attack my kidneys. And it didn’t see particularly useful to rehash my anxiety over and over again on here, even if that was what was going on in my head. It took almost a week for me to actually get in and re-do tests (but not before I had waited and then left my GP’s medical practice nearly in tears– on two separate occasions) and then I had to wait for the results. The good news is that my kidneys are not leaking protein, so lupus nephritis can be ruled out. But my creatinine is still elevated slightly. While leaves us with… vasculitis? (It’s certainly not all that “muscle-building” exercise I’ve been doing, since I haven’t seen the inside of a gym in months.) The jury is still out, but at least I have been able to quiet the catastrophizing voices in my head. Well, turned them down, anyway.
What this last round of anxiety has taught me is that despite being ill, I’m still pretty vain. Which isn’t necessarily an attractive attribute, but it tells me that I’m still invested in my whole self and how I appear in the world. One of my first thoughts was “Oh god, does this mean I’ll have to go on high-dose prednisone?!?” About a year ago I finally lost the last of the (30+ lbs of) weight I gained the last time I had an adventure like that and I have no desire to fight that battle again.
I started this post as an entry to the current Patients for Moment Blog Carnival, but I realize that I’m not sure I have any wisdom to add. Because I’m not very good at accepting new diagnoses (or calmly addressing the questions brought up by new symptoms). I try to tell myself that I can’t always control my illness, I can only control my reactions to it (a variation on my self-help strategy for dealing with frustrating people) but since my illness is a part of me, not a person or thing outside of me, that just ends up making me feel kind of confused and incoherent. On the other hand, I suppose while my symptoms are a part of me, my diagnosis is outside of me. My diagnosis says more about a consensus within the medical field than it says anything about me and my individual experience. A small distinction, but maybe an important one. Just because I have an unusual lab result doesn’t automatically condemn me to a life of chronic kidney disease. And just because my symptoms are flaring now doesn’t mean I’ll feel this way for the rest of my life. It could get worse, or it could get better. I think about my grandmother dealing with her diagnoses thirty-plus years ago—how no one offered her anything except Mobic and prednisone and cortisone shots because there just wasn’t much else to do. At least I have options, whatever the diagnosis might be.
Someone asked the Dalai Lama what surprises him most:
“Man, because he sacrifices his health in order to make money. Then he sacrifices money to recuperate his health. And then he is so anxious about the future that he does not enjoy the present; the result being that he does not live in the present or the future; he lives as if he is never going to die, and then he dies having never really lived.”
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.
I hosted a friend from out of town last week and I feel like I’ve been away from the internet for ages. I suppose that’s a good thing, particularly the fact that I felt up to the task of socializing in person, not just online. But now I’m scrambling to get everything done that I need to get done this week, including a video editing job and helping out with a blog for an art installation project on campus. But these things all fall squarely into the camp of “good.”
I think my success at balancing all this activity and not collapsing into a puddle of pain and fatigue is a sign that the MTX is doing what it’s supposed to do, though I’m not in love with the side-effects. If I continue to feel better, I suppose I’m just going to have to deal with the mouth sores, hair loss, and brainfog, all of which are relatively mild, but enough to make me cranky for all (or at least part) of the week. Current mantra: It could be much worse. Because I remember when it was.
Besides my weekly slog through MTX side effects, the bad/ugly column also has a hash mark for Friday morning when I absentmindedly backed my car out of my garage too far to the left and knocked off the driver side view mirror. It’s a rather expensive mistake (it will be about $250 for parts and labor), and not one I am particularly proud of seeing as I was stewing about a work-related email at the time. Poor little car. Ironically, my guest post over on Chronic Babe on the topic of mindfulness meditation just went up today. If I’m meant to learn something from my life right now, clearly that something is humility!