Three years ago tomorrow was the first time I’d seen a rheumatologist. I don’t know if that’s officially my “diagnosis date” or two weeks later when I went back to get the results of the tests. I do know that since that time, I’ve been through various stages in dealing with this disease and, from what I can tell from other accounts, many people have gone through similar experiences.
The Zealot. This was me when I was first diagnosed. I read everything, explored every Internet site, scoured every blog I could find. I knew (or thought I knew) everything about everything — medications, treatments, diseases, you name it, I knew it. And I was very righteous about it. I was on Methotrexate, so I gave up drinking, I started working out, eating better, etc. If there had been a religious order for RA patients, I would have been Mother Superior.
Denial. Being a zealot is hard work and it didn’t take long for the new to wear off. Shortly after I got my diagnosis, I had to have my hip replaced. I had to get off my meds for the surgery and afterward when I went to the rheumatologist for my check up, I told him I was going to stay off the medication. After all, all my symptoms had been in my hip, the hip was now replaced, so there was no real reason to keep taking them. Right? Right. Wrong.
Desperation/Frustration. It wasn’t long after I decided to stop taking the drugs that I started again. It turns out that not all the symptoms were in my hip. All my other joints were feeling the pain and, in fact, I had to have my shoulder replaced shortly after the hip replacement surgery. But finding something that worked and a treatment program I could live with wasn’t easy. I won’t say I was desperate, but I was very frustrated in trying to find something that worked. My rheumatologist put me on Humira as I refused to go back on MTX. Then I decided I couldn’t stand the rheumatologist the second time I had an 11:00 am appointment only to wait over five hours to be seen. So I changed rheumatologists to one that I love. And I changed medications from Humira, which wasn’t working, to Simponi, which worked, but didn’t last, to my current dose of Enbrel, which worked, but not quite good enough or long enough to get me through the week until the next injection. I was doing okay, but I wasn’t doing great. Recently we added Arava to the mix, which really helped boost the Enbrel’s effect, and with the addition of the Paleo Diet and some exercise, I’m doing better than I have in a long time.
Stability. I started to label this phase “acceptance”, but there’s a complacency aspect to that label that doesn’t fit. I haven’t accepted my disease — I live with it. I haven’t accepted that there’s not a cure or a better treatment plan, but I am stable on the one that I’m on. And while I continue to search for the holy grail of “better”, I’m doing quite well on the path I’m on. I have a rheumatologist that I respect and who treats me with respect, and I have a treatment plan that, for the most part, seems to be working, with few side effects. It’s not perfect, but it’s good.
I suspect there’s a subsequent, or potentially parallel phase:
Degeneration. There is no cure. And until/unless I go into remission, my body will continue to feel the effects of the disease. My orthopedic surgeon jokes that he has a new set of knees for me whenever I want them. I do pretty well, but it’s not too hard to imagine life one day with a cane or a wheelchair as a constant companion. But that day is not today. Today I’m doing well.
I hope that whatever phase your life is in at the moment is a healthy one. Thanks for checking in.