All Flared Up

Like most, my autoimmune journey started with a misdiagnosis. Though it begged me to advocate for myself, this was a skill that I simply did not possess and one that would take me years to hone.

I accepted the original diagnosis in 2011 of active Rheumatoid Arthritis (RA) with secondary Sjögren’s Syndrome and overlapping psoriatic disease. I even agreed to start immunosuppressive medication (Methotrexate) for it. When I asked my rheumatologist if there was anything I should do to clean up my diet, he gave me an answer that sounded like he’d said it thousands of times over the course of his career, “If these diseases had anything to do with diet, we’d have eradicated them ages ago.”

After six months with minimal improvement, I started to have doubts. I doubted how much the medication was really helping and it disturbed me deeply that they needed to do blood work every few months to see how my organs were holding up. I also had strong, unrelenting doubts about whether or not the diagnosis was correct. Something in me was telling me, ‘something is not quite right’.

At one of my routine follow-up visits when I complained about my symptoms not improving, my doctor told me, “No worries. If you are still not getting full relief once we have maxed out on the Methotrexate dosage, we can switch to biologics.”

This scared me the shit out of me. I had seen the patients in the infusion room, sitting in chairs with their liquid medication in clear plastic bags hanging above their heads. It looked like a cancer treatment center. After my appointments, I would glance back into the room to see the same people sitting there who’d been there when I’d arrived an hour earlier.

At my next appointment, bolstered by my budding knowledge about alternative medicine approaches, I screwed up my courage and told my doctor I wanted to stop Methotrexate. He said, “Well, if you ever need to start it again in the future, I need to let you know that the medication will likely not have the same benefits it has now. I can’t explain why this is so, but it is often the case with our patients.”

I swallowed his bitter pill and said, “I am willing to take that risk.”

“Then I wish you all the best,” he said. He smiled through his Santa Claus beard, clapped his thighs to announce that was that and stretched out his hand for mine.

“But, don’t we need to set up a future appointment?” I asked. I naively thought he would want to check in with me again in a few months to see how I was faring.

“No. If you’re not taking medication, there is no reason for us to continue to meet,” he said. I left his office with the realization that the only tools in the Western medicine toolbox were pharmaceuticals. Without those, there would be no treatment. No laying on of hands. No deep listening. No helpful suggestions with regard to lifestyle or diet.

As I gained my own clinical experience working with patients, I encountered others with a long-time diagnosis of RA. Some had fingers that looked gnarled, red and swollen. But others had fingers just like mine, cold but undeformed. The doubts I had all along about the RA diagnosis were vindicated. Slowly, a light bulb came on. And with it the beginning of the ability to advocate for myself.

I sought out a second opinion the following year and was given the diagnosis of primary Sjögren’s and “possible” RA. And then, just two years ago, I got a third opinion in the country where I now live and received a diagnosis of primary Sjögren’s only.

Until this month…when everything changed, forcing me on a new journey into completely uncharted territory.

5-4-3-2-1. Ready or not. Here I come.