Way back when I was first prescribed enbrel, my rheumatologist outlined her basic treatment plan for me. She wanted to start me on enbrel and, assuming it worked, keep me on it for a year at 50mg/week without even thinking about making any changes. After a year, she said, we could talk about taking me down to 25mg/week, and the goal would be for me to be on the least amount of medication needed to keep my symptoms under control.
This idea seemed groovy to me on the surface, but at the time, I was having so much trouble walking and raising my arms out in front of me that the thought of being well enough at some point down the road to think about weaning off this new wonder drug seemed far-fetched. As if.
But then I started to get better, and over the last year, my rheumatologist has continued to mention this prospect at my various appointments with her. In fact, when I saw her after taking my trip to South America, she suggested I try going down to one shot a week to test it out since I had managed to do fairly well off my shots while traveling.
I smiled kindly and said 'Thanks, but no thanks.' I wanted the drugs.
Going home that day, I realized the idea of weaning off my drugs completely freaked me out. Even though they have a big Scariness factor and are a big ol' inconvenience at times, I felt completely attached to them. Both of them; I was a two-shot girl.
The mere idea of sliding down that slippery slope and back into all the pain and fatigue I had experienced without them was enough to make me wistful for the comforting prick of a needle and the lovely aroma of alcohol swabs. My drugs were my new security blanket.
This realization didn't sit altogether well with me, though. After all, equanimity and non-attachment are (supposedly) a big part of my yoga practice, and getting to take fewer drugs should be a good thing. It would mean that I was genuinely better and doing well; it would also bring the advantage of saving time each week and making travel less of a hassle- all things I wanted.
I determined that I needed to get over my drug-attachment and find a way to transform myself from a two-shot girl into a one-shot woman. After psyching myself up about it for awhile, I came up with a game plan to help me let go of that second shot. My idea was, quite simply, brilliant: acupuncture! I would replace one big needle with hundreds of little ones all over me! And, by swapping some of the chemicals for a more natural remedy, I would surely feel even better, even more in control and yogically superior for having overcome my attachment to being a two-shot girl. I was a genius.
Satisfied with my resolve, I trotted off to my rheumatologist appointment last week prepared for her to make the glowing declaration that it was indeed time to cut my dosage in half and make me a one-shot woman. I would be the envy of the RA world, and everyone would cower at my Half-Dosage prowess.
Once in her office, she sat down and we began to talk about how I'd been feeling, etc., and I gave her my report. She asked me about my fatigue ('Still there'), if any of my joints had been giving me trouble ('a few'), and then she looked at my fingers. And of course, on that particular day, it just so happened that my right pointer finger joint was a little puffy, as was my right wrist. Nothing bad or even perceptible to anyone but me and her, but the answer, sadly, and my fate, was staring both of us in the face. 'Now's not the time,' she said.
All my yogic-superiority evaporated. I looked at her and asked, 'Really?' And she said it again: 'Yeah, now is not the time. I think you should stay on the 50mg.' I stared down at my wayward finger and wrist joint, feeling like they were disobedient kids who had just gotten me into trouble. I felt like I had failed a test, and for someone who was a straight A student, it was not a feeling I liked.
As I walked out of Beth Israel, I felt totally bummed out. The truth is, although I'm doing pretty darn good, I still struggle with the fatigue monster off and on, and some days, for whatever reason, some of my joints still give me problems. I'm absolutely better, just not 'better' enough, it seems.
So for now, at least, looks like I'm still a two-shot girl.