AT THE WATER’S EDGE:

Here we are. February 2, 2024. Rheumatoid Awareness Day. As I type this, I am sitting in the waiting room at my rheumatologist’s office. Only, it’s not “my” rheumatologist’s office anymore. You see, I had been going to the same doctor for over 16 years. He’s the one who got me to a healthy place for my wedding, who introduced me to biologics, who walked me through changing to Humira and who promised to never give up on helping me to feel my best. We had learned to trust one another. I even saw him at the American College of Rheumatology Annual Meeting a time or two. It can be hard to find a good doctor. But now I must start over. He decided to leave the practice, move out of state and focus on research rather than clinical work. I can’t blame him. He’s closer to family. And it’s important work. But now I sit here wondering how this new doctor will be and if he will trust me with shared decision making and how to convey to him my long journey with rheumatoid disease.

The good news is, my health is stable. It’s a lot easier to change doctors when you’re not in the middle of a health crisis. He shouldn’t need to change my treatment and I shouldn’t have to trust him to make any big decisions about my healthcare anytime soon.

My health is stable, but the disease is still there. As I think about Rheumatoid Awareness Day, I think about the work I put in with the Rheumatoid Patient Foundation to bring awareness to the fact that rheumatoid “arthritis” is a misnomer and that the disease encompasses so much more than joint inflammation. While I had to back down from my work with RPF as we took on new responsibilities in our foster and adoption journey, patient advocacy is still close to my heart. I sit here with joints feeling pretty good! They almost always feel good. But I still have dry eye. And psoriasis. And Raynaud’s, which has been flaring this winter. And likely other systemic disease impacts — none of which have to do with my joints. Until the true nature of this disease is understood, patients will remain undiagnosed or misdiagnosed or not receiving the appropriate care and treatment they need for the best outcomes.

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I write this part of the blog after my first visit with my new doctor. Verdict is: I like him! He had done a thorough job reading through my health history, was kind and empathetic, was partially trained up under my old doctor, was happy to hear of my patient advocacy work, avoided the term “arthritis” and we had a good discussion about biosimilars and what may be the inevitable future for adalimumab (the generic name for the med I’m on). As a bonus, a friend of mine also sees this rheumatologist and I found out after the fact that we had back to back appointments and I just narrowly missed seeing her! We’ll be planning appointments together in the future 🙂 Anything new or hard is always better with a friend!

I think I’m in good hands, but I’ll have to keep up with my old doctor and see what research he does as we work toward a greater understanding of rheumatoid disease — and I’m still here to connect with anyone else on this health journey, to help you find information or answer questions, to encourage you or walk beside you.