Category Archive

I’ve been a bit depressed this week about my JRA (Juvenile Rheumatoid Arthritis). I saw my rheumatologist on Wednesday, and he confirmed what I’ve been suspecting: that my jaw joints are swollen. This means that I have to wear anti-inflammatory patches over my jaw joints on my face. Very fashionable, as you can imagine. After the appointment, I went to have my hands x-rayed. As my hands were getting x-rayed, I was struck by their deformities and it hit me: these are not the hands I had even 5 years ago. And that sounds stupid in a way, seeing as how I’ve had two hand surgeries in the last 2 years, so obviously these hands are different than the ones I had even 2 years ago. But what was really striking me was my finger deformities: how much worse they’ve gotten. The fingers I’ve been ignoring and trying not to think about because there are no good surgical options for fingers. The fingers I’ve been pretending have been stable all this time and haven’t been getting worse–it’s just been my wrist or thumb problems that have been causing my pain.

This led me to be pretty depressed and to resurrect a long-hidden feeling I’ve had that my body is a time-bomb and that one day all that will be left of me is disability and pain.

I still have that fear. I will always have that fear. But last night, I received a gift from a phone call.

My stepsister called me to ask how I deal with being in constant pain. Considering my emotional state those last few days, I found the question deeply ironic and more than a bit darkly humorous. “She’s asking me how I deal with it now? This is such a cosmic joke!” But I made the decision about a year ago to try to be honest and open with everyone I talk to, and I kept it. I answered her honestly, that right now I wasn’t dealing well with it and that I’m still in the process of figuring out the answer. But as I was talking, I remembered something I figured out months ago and had forgotten. So I shared it with her.

“When I start hurting, I have this tendency to panic, to feel like the pain is never going to end. And, rationally, I know that’s not likely, but that’s my fear. But a while ago, I realized that even if the pain I’m currently in never goes away, I don’t have to deal with all of that pain right now. The only pain I have to deal with right now is the actual pain that I’m in right now.”

She wasn’t the only one that needed to hear that. I did, too. So today, though physically I’m worse than I was yesterday, I’m emotionally better, because I’ve remembered that there is another way to deal with my health issues than the cycle of avoidance and depression I’ve been stuck in.

All I have to deal with today is how I’m feeling today. And that’s so much less of a burden than trying to deal with how I fear I might be feeling forever.

So, thank you, Alex, for calling me last night.