I've had a very interesting chronic pain saga since the last time I posted anything. Apologies for the loooong break in updates!
I want to jump right into this post with a discussion on the flipside of my last post about being heard, which can be found here. Over the last few weeks, I have really been struggling with my rheumatologist's office refusing to hear how much I've been suffering.
As you may remember, I saw my doctor on January 25th and was injected with two syringes worth of depo-medrol for my pain. My nurse emphasized that I needed to call within three days if my body did not respond to that huge dosage of steroid. And it didn't. So I called, as instructed, and was treated to possibly the worst reception I have had since beginning my relationship with my rheumatologist's office.
I had never met the nurse who answered the phone, but I was immediately disappointed. I always greet the nurses warmly and say hello before giving my relevant information. She interrupted my cheery greeting and demanded my ID number. No hello. No "how are you today?" Nothing.
I told her how much I was struggling to get around, and that I was miserable despite the injectons of depo I'd received. I was assertive and upfront about my pain, this time, in the hopes that she would really listen. Her response? "Oh, you guys (arthritis patients) don't understand that you will get sore when the weather is changing. It's probably just a reaction to the snowstorm." Now, I knew we had an impending snowstorm and I also know very well that my body responds to weather changes. It's my body, after all, and my pain. However, if I thought at that point that my joints were angry just because of the weather, I probably would not have called at all. I was suffering a great deal, despite the crazy amounts of depo running through my body. The nurse continued, saying, "I'll talk to the doctor, but I think it's really just weather." With a curt goodbye and a promise to call me back shortly, she hung up.
Arthritis is a difficult road to travel. Any illness resulting in long-term chronic pain is often frustrating and defeating. Thanks to my rheumatologist and his nurses, I have been struggling through with some hope and an air of positivity. This one phone call, with this one nurse, ruined that positive attitude. I hung up the phone and cried. One nurse's attitude told me I was not significant, that my pain was not significant. In just a few words, she devalued my chronic pain experience completely. "It's just weather," when I couldn't put my socks on or tie my own shoes. "You guys don't understand it's just weather," when I can't shower by myself, or get down the stairs without falling.
I'm in tears now, writing and remembering the feeling.
The return call was not "shortly." In fact, I waited the rest of the day, and most of the day after, to hear back from the office. I did not call back, fearing that I would have to speak to the same nurse. Unfortunately, she was the one to call me, late in the afternoon. My doctor had said that he would not prescribe me more pain meds. He did not have any suggestions for my pain short of exercising. He advised that I call my primary care doctor and ask for some tramadol or vicodin.
In general, I really like my rheumatologist. He's young enough to get where I'm coming from, and often jokes and smiles with me. I appreciate that light-heartedness when I'm dealing with something as stupidly debilitating and frustrating as this ridiculously persistent arthritis and the pain that accompanies it. But I feel that my doctor and this specific nurse really dropped the ball. My very favorite nurse, the one who had administered my depo injections, made me promise I was going to call within three days if I didn't feel better. When I did as she'd demanded, my entire experience was totally devalued. I was treated as if I didn't understand the pain in my own body. Perhaps the nurse conveyed my pain to the doctor in such a way as to further underestimate it. Perhaps my doctor himself, as he has done in the past, underestimated it. Either way, my entire experience left me feeling worse than ever, emotionally.
I did not do as my doctor instructed. I've lived with this body, as sick and strange as it is, for 22 years, and I know what works for it. I endure a number of side-effects on a daily basis, and watch my body struggle to accept all these strange medications. No way did I want to casually toss another drug, especially an addictive one like vicodin, into that mix. Plus, when I can't put my own pants on, I'm pretty sure I can't go for a jog. I fall down when I'm walking to the door! Nope, I chose not to follow the doctor's orders. Instead, I coped as I have been doing this whole time. I struggled to overcome that first feeling of being told my perceptions of my own pain were incorrect. I didn't call the office again, because I didn't know how to approach discussing my last experience, or how to deal with needing to speak to that nurse again.
This post could be pretty ridiculously long if I gave it the chance, so let me sum up this week quickly. My favorite nurse finally called to check on me. She reacted with alarm, sadness and an incredible amount of compassion when I shared my discomfort and my daily struggle. She spoke with my doctor right away, called me back immediately, and scheduled an appointment. I went in yesterday, and my doctor conveyed how frustrated he felt with my progress. Test results have been good. Overall, my body is beginning to respond to the HUMIRA. My inflammation is down. My continued pain is perplexing and worrying, but I go in for x-rays next week. I'm facing the possibility of permanent damage in some areas of my body. I brought my mom in to make sure he stayed accountable and honest with me, and to make sure he answered all my questions and hers. I don't think he'll drop the ball again. We're both finally realizing that this arthritis is so much more aggressive and persistent than we ever thought possible.
The last month of my arthritis saga has been completely exhausting. I hear a lot of stories about chronic pain sufferers dealing with unresponsive doctors and nurses. This has been my very first encounter with that particular issue, and I hated it. I still don't quite know how to approach the issue, or with whom. I suspect that my doctor has accepted that he's met his match with my arthritis. But how do I even begin to approach the issue of that one nurse and her completely unacceptable behavior? This is not something I have figured out yet. Usually in my posts, I am able to provide some sort of lesson or summation of the lessons learned. Today, I can't do that. I hope that this somewhat selfish post is able to help those of you who have gone through something similar. You are not alone. This is more common than you think. Stay strong, and be confident in your own knowledge of your body. You know your pain better than anyone.
To be honest, this experience has brought me down quite a bit from my usual positive self. For the first time, I'm struggling to fend off sadness, negativity and depression. One nurse's attitude can do a world of good, or undo a whole lot of work. But hang in there, friends. Where there's a down, there's always an up following behind, somewhere.