For those of you who don’t know, I am now supporting the notion that rheumatoid arthritis (RA) ought to be called rheumatoid disease (RD), to separate it from the notion that it’s anything like osteoarthritis. Read on….
This post has been in my mind for a very long time, yet I’m still not sure how to convey these thoughts. I’ve decided to start spewing from my heart, and see where this goes. Multiple events have happened today that have made me see the need to get this out there. Here goes.
When I was first diagnosed, it was 1996. I was single, 23, and in graduate school. The internet not being what it is today, the ability to research my condition was extremely limited. I was reliant on my doctor for information, and at the time, that worked for me. I was overwhelmed and wanted direct instruction on what to do. Luckily, she was a great doctor, had my long-term health and happiness in mind, and gave me great advice (you shouldn’t get pregnant on methotrexate, but you can stop it and get pregnant when you’re ready). Fast forward 7 years, and I was married and thinking about these things. Unfortunately, when I started trying to get pregnant, my rheumy closed her practice.
I chose a new rheumy, and while waiting for my first appointment (a 3 month wait), I had a miscarriage. My first doctor had been ok with my staying on Enbrel while pregnant. Doctor #2 was not. In no uncertain terms, she told me that having kids was overrated, and that I didn’t need to do it. I should go back on methotrexate in addition to my Enbrel and forget having kids. I was furious.
What I didn’t realize at the time, but see now, is that I had developed into a different type of patient. Doctor #1 guided me through that and adapted with me. I learned more about my condition, asked more direct questions, and was able to see the big picture of my disease better. In fact, I was informing my doctor about the Enbrel (the first biologic for RA) trials before long before Enbrel had its name. She listened to me, researched it, went to conferences about it, and the moment it became available, we were talking about it.
I worked with Doctor #2. Given we were trying to get pregnant, I didn’t want to wait 3+ more months to get in to see another doctor. I educated her. I brought her research on Enbrel and pregnancy. She eventually decided to allow me to stay on the medication, although I think she made me sign some waivers. Still, our appointments were stressful to me. Her bedside “tell me what to do” attitude was irritating to me. I realized how stressful it was when I got pregnant with my son and my blood pressure was always 20 points higher at her office than at the OB office. After my son was born, I was flaring horribly. I got the same methotrexate and Enbrel demand (FYI, methotrexate almost killed me, as I went into major liver failure on it). I was done, and it was time to find a new doctor.
I picked Doctor #2 because she was a female (like doc #1), and I thought would be a good match in understanding my wanting to have a family and such. Obviously that didn’t work out for me. There were no other guaranteed female doctors nearby, so I decided to opt for a clinic. There were some female doctors in this large practice, but when you put in a request to be a patient (yes, you had to make a request), you didn’t get to decide what doctor you got. I wound up with a male doctor who was over 75 years old. I thought it would be a bad match. Again, I was wrong.
Doctor #3 was awesome. When I said, “I know I’m flaring, but I want more kids,” he said, “ok, let’s xray your joints, and if you are looking stable we can stay with Enbrel.” My disease (pain, fatigue, swelling, etc…) was up and down with him for several years, but all the while, my permanent joint damage remained pretty stable. He listened to me, gave me options and risks, and let me be the ultimate decision maker. No stress. No bad decisions. Working together. It was all good, until he retired (for the second time).
I didn’t change clinics, but rather got a new rheumatologist the clinic assigned to me. He’s very young, I suspect a few years younger than I am. He has kids a little younger than my son. He gets the family piece. I research things and ask questions. He answers them, including where the pitfalls in the research are. He gives me options and risks (if you go off your meds, there’s a 15% chance you’ll flare immediately and not get stable again. My risk/my decision). He gives me his opinions when there’s no research to answer my question. He participates in research. I love him!
What Kind of Patient Are You?
When I was with Doctor #1, I didn’t know anything about RA. The internet didn’t provide much, and I really wanted somebody to tell me what to do to get better. Doctor #1 did that, and as I got more knowledgeable and participated more in my own care, she adapted to that. She was a great match!
Although I won’t say Doctor #2 was a bad doctor, she was not a good match for me. She is a great match for my 80 year old neighbor who has Rheumatoid Disease and grew up in an era of “do what the doctor tells ya and don’t ask questions.”
Doctor #3 was also great for me. I knew I wanted more kids (although that unfortunately hasn’t happened for us). He kept me in a good balance of getting me where I wanted to go without screwing myself up long-term. I was more educated by then and quite opinionated about my own care, working all within the medical system.
For where I currently am as a patient, I couldn’t ask for any better than Doctor #4. Where am I as a patient? Well, without adding Methotrexate, I probably wasn’t going to see significant changes in my Rheumatoid Disease. I needed to be better than I was, and I won’t go back on that medication. I’ve done some big research, and have tried the diet and exercise route to try to improve my RA. It’s working. My rheumy sees it, my primary care sees it, and my blood tests agree with it. Here’s the kicker. Despite the fact that it’s working so well (well enough that the thought of getting off meds all together is in my head), this “treatment” of my RA is off the medical radar. There’s not much out there in the medical world to support what I’m doing. But it’s working, so I’m not going to stop, and no doctor has told me I should stop. And no doctor should tell me to stop based on what we currently know. A big focus of my appointment with Doc #4 yesterday was “listening to my body.” How awesome is that? My body is speaking to me, and when I choose to listen, I make strides in my health, and not just for my Rheumatoid Disease, but for my health in general. My conversations with my doctor revolve around what could be true, what information is available, what some organizations outside the pharmaceutical community are talking about. This is great information, and I would have missed it all had I still been the kind of patient I was back in the beginning.
My Rheumatoid road is 17 years long. I’m wondering what type of patient I will be 5-10 years from now. Right now, I am loving the relationships I have with my doctors (not just Doc #4, but my physical therapist and primary care doctor as well). The bottom line is not what I take, not what I know, but how I feel and what I need to do to keep this body working. Doctors don’t have all of the answers about rheumatoid, but I love when they know it and help you anyway!
What kind of patient are you?