I have a confession to make: despite flaring again for the first time in years, I had not been to a rheumatologist in eight months.
When my health remained pretty stable for the last three years, I guess I got caught up in the idea that maybe I didn’t need a rheumatologist, after all. I’m sure that sounds pretty stupid, and looking back on it now, it was a stupid thought, but that’s what I was starting to believe.
To put this in context, I moved back to Michigan from New York at the very end of December 2015. I saw my rheumatologist in New York in November, not knowing at that time that I would be moving. When I got back to Michigan, I spent some time nursing my emotional wounds, got a job, and started looking for a primary care doctor.
I vaguely thought about possibly needing a rheumatologist, but it wasn’t really a priority for me. I thought that maybe I did not need to add this component back into my life. I was too busy worrying about who was going to prescribe my medication to worry about looking for a specialist.
I am also a creature of habit. So after experiencing some events that caused me to flare for the first time in a long time, I decided that if I was going to see a rheumatologist, I wanted to see the same person at the University of Michigan that I had seen when I was a graduate student there -- my first and only rheumatologist, until I moved to New York.
My previous rheumatologist was very accommodating and agreed to see me. I had kept in limited contact with him during my time in New York, knowing that at some point there was a chance that I would move back to Michigan, and that I might want to start seeing him again.
I often joke that my relationship with my rheumatologist is the longest relationship I have had with a man other than my father. But the reality is that it is difficult to build relationships with doctors, so when you find a good one, you don’t really want to let them go.
From where I live now, the University of Michigan isn’t super convenient, but if I have to see someone, I would rather it be someone that I know, someone who already knows my health history. And because my health is currently more stable than it once was, I will likely only have to see my rheumatologist every six months or yearly.
I went to my rheumatologist at the beginning of August 2016. Despite feeling like my health has been pretty stable, the appointment was quite enlightening. I had noticed at times that my skin had a somewhat yellowish undertone to it, but I ignored it and didn’t think much of it. My rheumatologist picked up on this even though I didn’t mention it, and told me that I am likely on too high of a dose of Quinacrine. He also seemed to think that some of the other issues I have been having may also be related to Quinacrine. So I am going to stop taking it for several weeks and then see how I feel. While the thought of stopping a medication that, in combination with a few others, has kept me relatively stable is a concern, I certainly don’t want to be on something that is causing adverse effects. I am keeping my dose of Imuran the same, and am adding a medication that I hope will help me sleep, as sleep problems may also be contributing to issues with my overall health.
The only challenge, which I worried about when I started seeing my rheumatologist in New York is that she would fundamentally disagree with what my other rheumatologist had said and done, or worse, she might think that my diagnosis was inaccurate. That didn’t happen, although my rheumatologist in New York felt like lupus was a bigger problem than the RA, and my rheumatologist in Michigan felt like the RA was a bigger problem than lupus. But my current rheumatologist didn’t want to make any other major changes at this time until we get a new baseline of where my labs are.
Even though it has been three years since I last saw this rheumatologist, it kind of felt like old times, which I appreciate. I feel confident in the care that he provides, and even though things have spiraled a bit, he gave me hope that we can get things under control again.
This experience made me realize that not only do I need to regularly see a rheumatologist, but I was once again reminded that they are the core of my medical team.
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Leslie Rott authors the blog Getting Closer To Myself. She is a professional patient advocate, and has been raising awareness about lupus and rheumatoid arthritis, and issues involving chronically ill students in higher education since 2008. Along with writing for HealthCentral, she writes for a variety of other health sites, as both a featured blogger and a guest contributor.