Saturday, January 28, 2012

When you're not talking loud enough, how can anybody hear you?

I learned a valuable lesson this week; the strangest thing about my arthritis is that it's constantly teaching me all sorts of little lessons. I guess that's what makes blogging about chronic pain a relatively easy task. 

I've been living in constant pain. Every day, I wake up and I'm afraid to move for a minute. Sometimes when I'm holding still my joints stay calm, and I can almost pretend I don't spend every day in bed because I can't walk. A year ago, to calm my crazy thoughts at night, I would imagine riding my horse through green fields, and I would fall asleep. The last time I closed my eyes and hoped for happy thoughts, I imagined going for a simple, slow walk, and the pure joy that imagination brought to my mind destroyed me. Even now, almost a week later, this brings tears to my eyes. How could I think, for so long, that this life is okay? How could I wake up every morning and just accept that I would spend my day in bed by myself? How could I let my pain take me over so completely that WALKING is my happy thought?

This is not to say that I haven't been getting treatment. I've been on methotrexate since November, with the dosage increasing every time my stubborn body didn't respond. I've had three different prednisone tapers now, though unfortunately with poor results each time. My doctor threw in hydroxychloroquine in December, though if that's working I've yet to feel it. Every combination of these drugs has been wrong. I've been swamped in side effects, from nausea to incredible headaches, but not once has my body responded positively. 

I kept up with my doctor as he had asked me to: we e-mailed back and forth whenever I had a question or a concern. Sometimes I called the office, but often I felt that the nurses probably didn't want to hear from me, so I just kept sending e-mails. Every three weeks, without fail, I would say "I'm not feeling much improvement..." and my doctor would throw out another option, or dosage increase. Meanwhile, my mom and The BF stewed away quietly, pissed that I lived my life within the confines of my stupid, stubborn arthritis. The BF pushed me to say more, call and complain, and stand up for myself, but I repeatedly refused. I've never been a confrontational person, and I struggled with the idea that the nurses on the other end of the phone really cared about what was happening within my body. I felt that updating my doctor every three weeks should have been enough.

Maybe that's true. Maybe my updates should have been enough, but I'm not so sure. After all, I never wrote, "I can't move or dress myself." I always wrote, "I'm not feeling an improvement." I never called and said "Hey, I can't walk. I can't function. Please make this better for me." So, when I finally sent an e-mail last week detailing my struggles with school, and the fact that a professor had removed me from class because I wasn't physically able to show up, my doctor responded with surprise. He immediately scheduled an appointment with me. When I got to the office, the nurses all knew me, remembered my story, and greeted me warmly. They were sad, and concerned, to see me walking slower than ever. 

My doctor examined my joints with astonishment. Not one had responded favorably to treatment. Some were so bad, we had to take a moment to discuss future steroid injections. The nodule on my thumb baffled him completely; he had never seen anything like it before. My e-mails, it seems, really weren't very helpful at all. I never expressed just how bad my body felt. We spent a long time talking, my doctor and I. I got my prescription for HUMIRA. He said he would call me in two weeks. HE would call ME. Because I'm important. My illness is significant. I treated it like an everyday burden that I would always bear, but my doctor (and yes, The BF and my mom) are right: this is not acceptable. Nobody deserves to spend every day in pain. 

When my appointment ended and the nurse came in to give me some steroid injections, she also gave me a hug. She told me we would fix it. She told me, most importantly, that I need to CALL and make myself heard. "Don't think, just call," she said, with a squeeze to my arm. "We think it's working unless you tell us it's not." 

Because I was too afraid to come on too strong, or sound too aggressive or pushy, I never conveyed my extreme pain to my doctor or his nurses. Because I didn't express my concerns, I'm now facing permanent deformity - that thumb nodule that I worried about so often is osteoarthritis, and it will always be there now. I didn't have to live confined by chronic pain. I still don't. 

One of the worst things about chronic pain is its ability to get inside your head. I spent every day dreading the next morning, because I thought that's what I was supposed to do. I thought waiting was the name of the chronic pain game. When depression sets in, so does complacency. Don't spend your life waiting for the treatment to happen; when it doesn't work, it doesn't work, and you need to stand up and say so. Your doctor is doing what he/she knows best: treating your illness. When a known combination doesn't work for your body, your healthcare team might very well believe it's working, unless you tell them otherwise. Don't sit and wait for the pain to rule your life. Be active and vocal in your own treatment. 

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