When Things Go Well
Since the beginning of RA for me almost five years ago now, I’ve had episodic flares that just come and go. One day I might feel pretty good; a week may go by like this, then maybe a month if I was lucky. Then, randomly I’d wake up swollen and in pain.
Once the flare arrived, it was consistent pain for weeks at a time. Some days were worse than others. Nonetheless, there would be a constant background of pain and stiffness. I’d rely on methylprednisolone to get me through as I’d wish for a more long-term solution.
Did the biologic lose effectiveness?
I’ve tried several drugs and in various combinations, eventually settling on monotherapy with a single biologic. I called this “good enough” and felt decent maybe 70 to 80 percent of the time. To me, that was a major improvement. I could work out most of the time, rough house with my kids, and take care of chores around the house (mostly, though often with pain in my feet). This lasted about two years, then the effectiveness seemed to fade.
Reluctance to try new medications
I was reluctant to try new medications. At the busiest point of my life, with two young kids, a teenage stepson, graduate school, and two part-time jobs, I just didn’t want the uncertainty that came with a new medication.
Dealing with pain had become part of my routine. I approached it from a mindset of “f*ck it, I’ll just deal with it.” Pain was just another part of life to manage, and honestly, I think I did a decent job at it, all things considered. I didn't want to try the other options that my doctor constantly brought to my attention. Life was comfortably uncomfortable.
The new medication worked for the better
Fast forward to now, and I’m living a different life. In the span of a little more than six months, I’ve gone from thinking “I’ll always live with pain” to “Is the pain going to come back, or I am I finally free?” At the insistence of my doctor, I added a new medication to my routine. Things did not go well at first. The side-effects, though moderate, were annoying, and the medication didn’t seem to make much of a difference. Eventually, however, the side-effects went away, and to my surprise, so did the pain.
RA is the fight of my life
I mention in my other videos and posts that I’ve been working out by riding bicycles and lifting weights since the beginning of RA. I’m a lifelong athlete, and I’ve simply refused to give it up though a few times I tried. Experts with whom I work or my doctor would tell me I would be better off taking it easier.
I've tried to give in, but it didn't work for me
A few times I would say to myself, “Okay, I give in; it is time to accept reality and my physical limitations.” I’d rest more, exercise a lot less, and be looking for comfort rather than a challenge.
It would feel good at first to be relieved of the constant physical work I was used to doing. But then after a few weeks, I’d become depressed, unmotivated, and nihilistic. I’d hit dark places in my mind, and just check out. The pain would get worse, not better.
I need a challenge and need to push myself. I do not feel healthy, physically or mentally, when I don’t exercise.
Viewing RA as the enemy
To me, RA is the fight of my life. Some people don’t see it that way. I do. It’s an all-out battle for my health, my family, and my future. I feel better when I am fighting. I feel better when I view RA as an external enemy that must be challenged.
When I view RA as something that is taking from me what I hold dear, I become determined to fight at all costs. People have different ways of coping. This motivates me and keeps me disciplined.
Less pain due to effective treatment
Even though my feet are damaged from years of active disease flares, oddly they no longer hurt like they used to. Tight shoes are still unbearable, but otherwise, the pain is gone. I ran six miles yesterday with no pain. Six miles with no pain. It is shocking to even say such a thing. I would never have thought it possible.
A year before being diagnosed with RA, I married my wife on a backpacking trip in Patagonia, Argentina. I’ve always dreamed of going back there together for our tenth wedding anniversary. Whenever I envisioned myself trying to hike the steep mountainside to the place we were married. However, I’d invariably see myself unable to shoulder a backpack, put on hiking boots, and make the trek. Now I am thinking it is a real possibility that we may do that together.
Medication has changed my life
Medication transformed my life and has given me back so much of what I thought was gone forever. I don’t know how long this will last, but I couldn’t be more thankful, even if it is only a short while.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?