The End of the Road
I’m finding myself at the end of the road, medication-wise, and I’ve been here before. My current biologic is wrecking havoc on my body and I’ve decided to stop it. The problem is that I don’t have many more options unless I want to go back to medications that I tried previously. I’m someone who seems to stop reacting well to biologic medications after a few years, so I’m not surprised, just disappointed.
When a treatment stops working
I remember the first time this happened, about fifteen years ago, and I remember being very scared. I was 35, supposedly in the prime of my life, and instead of getting married and having children like my peers, I was struggling to do even the most simple tasks. Things like taking a bath were impossible because, although I could get in, I couldn’t get out. My body was rejecting every drug that came my way until there weren’t any more options. I can’t say this time things are easier for me, because my body has lived through fifteen more years of disease and it shows. I can get through the day pretty well if I rest in the afternoon, but I won’t be winning any prizes in any area of my life right now. I’m also dealing with the physical issues that the medication has caused, which makes me uncomfortable for much of the day.
I know that my experience isn’t unique because my fellow RA/JRA buddies have shared similar stories. But my life is, and my choices around my situation will be too. We all have similar struggles and unique responses, and as someone who tries to do things better as I go through life, I know that I can learn from the choices I made in the past. Choices that led me into more angst, wasted my precious energy and gave me little more than a good story in the end.
Living up to impossible standards
In my thirties, I spent a lot of time fighting against myself and trying to achieve impossible self-standards. I chose not to listen to my body when it was crying out for rest, and one afternoon found myself falling asleep at the wheel driving home from yet another appointment with the latest holistic doctor that someone had recommended. I was lucky that a fellow driver on the highway beeped at me and saved my life. I thought that as long as I was doing something, kept moving, I could say that I was still productive, and still valuable. I told myself that the disease wasn’t beating me as I hobbled along the beach with my dog Willow every day. I thought that since the medical community was failing me I would find the answers elsewhere, so I relentlessly sought out answers from acupuncturists, Naturopathic doctors, Herbologists, energy healers; you name it I tried it. Each one gave me sage advice about supplements, diet, exercise, and each one did their best to help me.
Listening to your body
However, along the way I conveniently forgot lesson number one in well-being: Listen to your body. Instead, I was dictating to it, trying to will it into submission. I was not accepting my reality because it was one that I felt was unacceptable. And then I came across this quote about acceptance from Deepak Chopra:
“When you struggle against this moment, you're actually struggling against the entire universe. Instead, you can make the decision that today you will not struggle against the whole universe by struggling against this moment. This means that your acceptance of this moment is total and complete. You accept things as they are, not as you wish they were in this moment.2 This is important to understand. You can wish for things in the future to be different, but in this moment you have to accept things as they are.1”
This quote stopped me in my tracks because it offered a version of acceptance that I could deal with. As much as the present is one that I desperately don’t want, it is here, and it is looking the way it is. But who knows what the future holds, none of us do; the one thing I do know is that the only constant is change. This uncomfortable and scary moment I find myself in will change, and if I want it to change for the better I’ll need to learn from the past.
So, as my body is trying hard to re-balance itself as it rejects my latest medicine I’ve decided to give myself a break. So, I’m not doing anything very well right now; I’m becoming a bit de-conditioned, and getting through the day is the best I can do. I’m okay with that, because I’m finally listening, and even though what I hear isn’t making me happy, it will have to do. I want to be ready when things change because they will. One thing I’ve learned from the past is that my body is extremely resilient, and I hold onto that fact as I hope for a future with more comfort and less pain.
When was your last flare?