Stalemate
I had my third rheumatology visit this week, and this visit was all about pain. In addition to getting a baseline on my joints and mobility, my doctor ordered another full set of bloodwork in order to gauge the effectiveness of the Plaquenil. But all that was sideline stuff to me. I was interested in talking about pain. How do I manage it? How do you treat it?
I am not happy with the answer I received. I presented my doctor with a month's worth of journal pages detailing daily pain levels. I told him how many times I'd had to go into work late or leave early due to pain. I described the really difficult days I've been having and asked about options for pain treatment. His answer was to take me off the anti-inflammatory I'd been taking and give me a steroid shot. I asked him what my other options were. He didn't offer any. So I took the steroid shot. The nurse asked me to call her in two days and tell them if my condition had improved. I said I would.
I was - and am - opposed to taking steroids because of their many side-effects. I have struggled with my weight for most of my life, and a few years ago worked really hard to lose 130 pounds. I have gained back forty of those pounds, and the last twenty of those pounds happened because pain and fatigue have taken a huge toll on my activity level. Steroids cause weight gain. But that's just one problem with them. They deplete the immune system, which is already being compromised by the Plaquenil. They make it difficult to sleep - today I am functioning on 16 hours of sleep out of the last 72. They make me irritable, and believe me, I don't need any help with that. I'm already irritable because I'm exhausted and in pain.
I called the nurse on Friday at around eleven am, as she had requested. I left her a message stating that not only was my pain unaffected by the steroid shot, I was also more tired than usual because I'd only had about four hours of sleep for the last few nights. She called me back at four and asked me several questions about how I was feeling, and I answered them, then she informed me that my doctor would be out of town all week next week, but that she would tell him about the failure of the treatment when he got back. And after that, it might be four or five more days before he made a decision on what to do about it. If anything.
So I feel like we've reached a stalemate, the doctor and I. He is opposed to treating pain. He wants to treat the source of the pain. Well, I agree with that. By all means, treat the source. But don't pretend that the pain I have doesn't matter and that I can just push through it. I've been pushing through pain all my life. I worked on the farm all summer when I was thirteen with broken ribs that no one knew about. I delivered a nine pound baby without any pain medication. I've had kidney stones, gallstones, and plenty of other painful conditions. I am tough and I have a high tolerance for pain. But I also have to function in my life; I have to be able to work full time, parent my daughters, and maintain my home in a livable fashion. My life doesn't get to stop while my doctor fiddles with steroids and ignores my pain.
The next step will be to call other rheumatologists and see if I can schedule an appointment with someone else. I know it'll take about six months to get in with another physician, and during that time, I'll keep seeing my current doctor, even though we aren't seeing eye to eye. I don't know how to make him understand where I am. Or maybe he already understands. Maybe he just doesn't care.
I am not happy with the answer I received. I presented my doctor with a month's worth of journal pages detailing daily pain levels. I told him how many times I'd had to go into work late or leave early due to pain. I described the really difficult days I've been having and asked about options for pain treatment. His answer was to take me off the anti-inflammatory I'd been taking and give me a steroid shot. I asked him what my other options were. He didn't offer any. So I took the steroid shot. The nurse asked me to call her in two days and tell them if my condition had improved. I said I would.
I was - and am - opposed to taking steroids because of their many side-effects. I have struggled with my weight for most of my life, and a few years ago worked really hard to lose 130 pounds. I have gained back forty of those pounds, and the last twenty of those pounds happened because pain and fatigue have taken a huge toll on my activity level. Steroids cause weight gain. But that's just one problem with them. They deplete the immune system, which is already being compromised by the Plaquenil. They make it difficult to sleep - today I am functioning on 16 hours of sleep out of the last 72. They make me irritable, and believe me, I don't need any help with that. I'm already irritable because I'm exhausted and in pain.
I called the nurse on Friday at around eleven am, as she had requested. I left her a message stating that not only was my pain unaffected by the steroid shot, I was also more tired than usual because I'd only had about four hours of sleep for the last few nights. She called me back at four and asked me several questions about how I was feeling, and I answered them, then she informed me that my doctor would be out of town all week next week, but that she would tell him about the failure of the treatment when he got back. And after that, it might be four or five more days before he made a decision on what to do about it. If anything.
So I feel like we've reached a stalemate, the doctor and I. He is opposed to treating pain. He wants to treat the source of the pain. Well, I agree with that. By all means, treat the source. But don't pretend that the pain I have doesn't matter and that I can just push through it. I've been pushing through pain all my life. I worked on the farm all summer when I was thirteen with broken ribs that no one knew about. I delivered a nine pound baby without any pain medication. I've had kidney stones, gallstones, and plenty of other painful conditions. I am tough and I have a high tolerance for pain. But I also have to function in my life; I have to be able to work full time, parent my daughters, and maintain my home in a livable fashion. My life doesn't get to stop while my doctor fiddles with steroids and ignores my pain.
The next step will be to call other rheumatologists and see if I can schedule an appointment with someone else. I know it'll take about six months to get in with another physician, and during that time, I'll keep seeing my current doctor, even though we aren't seeing eye to eye. I don't know how to make him understand where I am. Or maybe he already understands. Maybe he just doesn't care.
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