So, pop quiz. Describe your RA in one word. (And please feel free to share your word with the rest of us in the “comments” section below.)
At various times since my diagnosis eight years ago, I’ve been asked to describe or explain or discuss RA a number of times. This latest one-word question was asked as part of RheumatoidArthritis.net’s 2016 RA in America Survey. (If you haven’t taken it, I encourage you to take a few minutes to do so. Links to this year’s survey and the results of last year’s are on their site.)
My word: Relentless.
I’ve used a lot of words to describe my RA, some of them with four letters. And maybe this is just how I’m feeling at the moment. But honestly, I am really, really tired of having RA and its relentless attack.
I go on vacation; RA comes with me. I try to sleep at night; RA wakes me up. I try to get stuff done in the day; RA interrupts. I’m feeling really good; RA decides to flare.
Prior to RA, everything was temporary. Got a cold? Wait a week. Have an infection? Take some antibiotics. Sprain an ankle? Take it easy for a few days. That’s because prior to RA everything would eventually go away.
I think when you’re told that you have a chronic, incurable disease, your mind goes back to prior experience, or at least mine did. And that experience included colds, infections, and sprains that eventually cleared up. I had this image of joint pain popping up a couple of times a year (maybe) then leaving me alone the rest of the time.
I do okay most of the time, but I’ve learned to live with — or perhaps “live around” — RA. I know to move slowly in the morning because everything is going to be stiff and painful for a while (generally until I have a hot shower). I wear comfortable shoes and try to eat right and take my meds and show up to have labs done every four weeks. RA and I have become uncomfortable roommates.
Even on those days where I’m feeling pretty good, I can tell I’m losing ground. I can’t grip as well or as for as long as I used to, even a few months ago. Standing (or for that matter, sitting) for long periods is out of the question. Kind of like a new grey hair or a new “smile line” around my eyes, it seems like I find more evidence of RA’s relentless pursuit every day.
But I also have other words for RA. Words like “hopeful” because there are so many more new treatments on the horizon, and there is so much more education and information and, especially, patient empowerment than ever before.
So share your word (PG13-rated, please). And thanks for checking in.