Holding Out Hope?
At my last check-up with my rheumatologist, I was feeling pretty frustrated. I’d been in more pain than usual the week prior to my appointment, and as a result the week had been far less productive than I’d hoped. Tired and achy, I’d made it through each day feeling discouraged at how little I’d accomplished, and went to sleep in braces and on a muscle relaxer wishing to wake up feeling better in the morning. Yet, each morning I awoke to find the same level of pain and fatigue. By the time of my check-up, I was starting to worry that this could become my “new normal.”
Over the 15 years that I’ve been diagnosed with rheumatoid arthritis, my “normal” has shifted several times. At 37 years old, I am still able to lead a fairly active lifestyle. I don’t exercise as much as I should, but I can usually pick up my three-year old son when he needs soothing, run errands and bring in sacks of groceries, and go for walks with the family. Yet I am hyperaware of all of these activities, and have to perform them with care to ensure I don’t put too much strain on my joints in the process. The carefree days of my youth when I could lift weights, kickbox, and play soccer for hours are gone, and the fear of what my life may look like as I continue to age having a degenerative disease creeps in occasionally.
During the week leading up to my doctor’s appointment, I had been experiencing fearful thoughts more often than I typically do. It’s rare that I worry about whether I’ll need surgeries, but my hip pain had me thinking about whether a hip replacement is in my future. The pain in my bunions had me thinking not about whether I’ll need surgery on my feet, but rather how far away that surgery will be. As a mother of two children who are three and five years old, these are not the thoughts I want to be having.
The day of my appointment, I was feeling a little better than I had in the days prior, but I still thought a dose pack of methylprednisolone might be recommended during the visit. Instead, I was surprised by what my rheumatologist had to say. He noted the significant swelling in my hands, and he did order x-rays to observe how much damage there is in those joints. Yet, rather than the short-term fix of steroids, he suggested adding Plaquenil to my pharmaceutical regimen of Orencia and Arava. My rheumatologist said he felt that my RA was 75% controlled, and that perhaps by adding the Plaquenil we could get to the point of remission.
I was in shock. I’d been feeling so frustrated and fearful about my RA, the possibility of remission hadn’t even occurred to me. To be honest, it has been a very long time since I have thought about remission potentially occurring in my future. Shortly after my diagnosis, when I was first put on Enbrel, I hoped that perhaps it would “fix” all my symptoms. It certainly helped, but not enough to push RA out of my daily experience. Nine years later when I got pregnant, I again hoped that I’d be one of the lucky women who go into remission during their pregnancies. However, I was again disappointed. In the past five years, I haven’t considered remission as a possible outcome, in spite of reading the comments of countless people in this online community who say they are in medicinally induced remissions.
Now that my doctor has reminded me of this possibility, I feel at odds. On one hand, I believe in the power of positive thinking, and I have experienced first hand how much stress can exacerbate my symptoms. Believing that I might go into remission seems like a helpful state of mind. Yet, doubt creeps in immediately as soon as I consider the possibility. After 15 years of trying four different biologics, various DMARDS, and all kinds of alternative therapies, I’m still coping with RA on a daily basis. In addition, dealing with the grief of having this disease and the impact it has on my life remains an ongoing process. It feels extremely challenging to work on accepting my reality while simultaneously hoping for a better one. Yet, my rheumatologist’s statement has served as a powerful reminder that it is important to hope. Now I am working on that thin line between allowing myself to hope for remission, while not becoming overly disappointed and frustrated from unrealistic expectations. It’s a difficult balance, and I’m sure it will teeter from time to time as long as I have symptoms of RA.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?