There's my little friend!
It seems like my rheumatoid arthritis is making a reappearance in my life. I'm trying hard not to freak out about it, and mostly succeeding, at least during the daylight hours. Nighttimes are different. See, my flareups often start at night, or late in the evening. It's not unusual for me to go to bed feeling fine, and wake up at three in the morning with pain in a joint that is the precursor to a flareup. Now, that's a very neutral-sounding statement, and it really doesn't convey the full impact of this experience. Imagine going to bed feeling good, free of pain, and believing that you'll remain so, maybe making some plans for the next day -- anything from climbing a mountain to working out to normal daily activities like driving, doing essential house chores, cooking yourself something to eat. Then, sometime in the worst part of the night, you roll over or do something, and are awakened by a twinge. You don't immediately identify it...and then you realize what it is. No warning, no mechanism of injury -- that's how it starts and that's how you know it. That feeling is the warning that in a matter of a few hours, you may well be incapacitated with pain, even from the smallest joint in your body. You may be unable to move in any way, or remain still, without experiencing agony. It will go on for as little as 36 hours and as long as three days -- so far.
I have never been to prison. I have never been tortured. But that feeling makes me think that this is what it's like to be in prison, and to be tortured, and to wake in the middle of the night to a step in the hallway outside. It might be nothing, but you know it probably isn't. You don't know why it happens; you didn't do anything. You don't know why your cell door will open, or if it will -- maybe it's not the torturer at all, but someone going to the bathroom. But you do recognize the step, even as you hope that it's someone else. You've tried everything you know to get it to stop, and nothing works. You don't know what makes it better or worse. You don't know what part of your body the torturer will choose to mutilate this time; you don't know if that part of your body will ever be right again when it's over. You know that there is no help and there is no reprieve until it simply decides to stop, for its own reasons. And, truly, there is no help and no reprieve at three in the morning. What you have is what is in your medicine cabinet and it will work as well as it ever has, which is to say, you've never seen any real evidence that it deters the torturer one bit.
In the daylight, the situation changes, but not by all that much. Maybe you're lucky, and the flareup that terrified you at 3 am with its potential to be the worst pain you have ever experienced in your life, seems like it might not be all that bad, on the moderately severe but manageable scale -- that you'll be able to get around and do what you need to (if not everything that you would like to), at the cost of some pain, but it'll be doable. In the daylight, you can call your doctor and say, "What now?" That's what I'm about to do. I think we're going to have to have a talk next week, and I don't think I'm just going to confine it to the current state of my disease. I think I'm also going to talk to him frankly about the current state of my mind, as described above. I'm sure he's got plenty of tricks in his bag for managing the disease, but he needs to know what I'm going through at 3 am.
On a related topic, I'm thinking of firing my primary care physician, for reasons of being insufficiently proactive about a few health issues (the RA being one but not the only one), and also being a little too casual about details (his whole office is a little too hakuna matata). If anyone here has ever fired a healthcare provider, I'm curious about your experiences and what led you to the decision. I'm not so concerned about picking out another primary care -- I have a couple of good sources that I'm going to ask for recommendations, including my rheumatologist -- but about the decision process for firing the current doctor. He does a lot of good things that I respect; I'm just not sure he's going to do a lot of good things for me.
I have never been to prison. I have never been tortured. But that feeling makes me think that this is what it's like to be in prison, and to be tortured, and to wake in the middle of the night to a step in the hallway outside. It might be nothing, but you know it probably isn't. You don't know why it happens; you didn't do anything. You don't know why your cell door will open, or if it will -- maybe it's not the torturer at all, but someone going to the bathroom. But you do recognize the step, even as you hope that it's someone else. You've tried everything you know to get it to stop, and nothing works. You don't know what makes it better or worse. You don't know what part of your body the torturer will choose to mutilate this time; you don't know if that part of your body will ever be right again when it's over. You know that there is no help and there is no reprieve until it simply decides to stop, for its own reasons. And, truly, there is no help and no reprieve at three in the morning. What you have is what is in your medicine cabinet and it will work as well as it ever has, which is to say, you've never seen any real evidence that it deters the torturer one bit.
In the daylight, the situation changes, but not by all that much. Maybe you're lucky, and the flareup that terrified you at 3 am with its potential to be the worst pain you have ever experienced in your life, seems like it might not be all that bad, on the moderately severe but manageable scale -- that you'll be able to get around and do what you need to (if not everything that you would like to), at the cost of some pain, but it'll be doable. In the daylight, you can call your doctor and say, "What now?" That's what I'm about to do. I think we're going to have to have a talk next week, and I don't think I'm just going to confine it to the current state of my disease. I think I'm also going to talk to him frankly about the current state of my mind, as described above. I'm sure he's got plenty of tricks in his bag for managing the disease, but he needs to know what I'm going through at 3 am.
On a related topic, I'm thinking of firing my primary care physician, for reasons of being insufficiently proactive about a few health issues (the RA being one but not the only one), and also being a little too casual about details (his whole office is a little too hakuna matata). If anyone here has ever fired a healthcare provider, I'm curious about your experiences and what led you to the decision. I'm not so concerned about picking out another primary care -- I have a couple of good sources that I'm going to ask for recommendations, including my rheumatologist -- but about the decision process for firing the current doctor. He does a lot of good things that I respect; I'm just not sure he's going to do a lot of good things for me.