I am on “house arrest.”
Let me explain.
Earlier this year, I wrote Large and In Charge: Building a Better MS Care Team, a column about my frustration with my “MS medical team,” my understanding (or lack thereof) of who was doing what for me, and my discovery that the only person in charge of that medical team was me.
I wrote the column in September, motivated by my then-sore right shoulder, the crazy weird nerve pain from my right elbow to hand, and the inability of multiple specialists to unravel what was behind these issues.
More broadly, it was about my decision to no longer mindlessly accept referrals to medical professionals who do not specifically have a focus on, or experience with, MS patients. Because, after years of not doing so, I discovered that there are economic incentives within the U.S. healthcare system that may work against the integrated care that MS demands. If I want better care, then it is up to me to knit these resources together into a team that works on my behalf — not the system’s.
I also wrote that I would share my progress as I built my new team.
The short-ish story is that I have met and discussed this process at length with Amy, the physiatrist I began seeing just after my diagnosis in 2013.
I’ve taken the time to learn more about what a physiatrist actually does, what role she may be best-suited to play. And I am about to do the same with my new neurologist, because in the haze and flurry of my diagnosis I’d neglected to do so.
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