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How A Trip To The Eye Doctor Led Me To A Rare Autoimmune Disease Diagnosis

Let me start by saying I have, by no means, figured out a foolproof system for managing my AS. I still have flares, and my back does still bother me. But almost two years since receiving my diagnosis, I definitely have a better handle on it now than I once did.

Diet and exercise, specifically, have proven to be important factors in fending off flares. When I do eat certain things–like sugar, refined oils, alcohol, and gluten–sure enough, my symptoms flare. I’m also noticeably more stiff when I don’t get enough exercise, or sit for long periods of time. So, I do my best to stay on top of my movement routine.

But the biggest inflammatory trigger of them all, at least for me, has been stress. When my fight or flight kicks in, I get those telltale, hot, red, puffy hands, and the effects ripple out through my body. I developed a newfound curiosity for the mind-body connection, which led me to a therapist who specializes in chronic pain. Working with her has been extremely helpful in not only learning how to manage stress, but working on some of the underlying issues that spike my stress levels.

Ultimately, my main focus now is maintaining homeostasis in my mind, body, and spirit. Lifestyle is key–but to that end, trying not to worry about getting it perfect 100% of the time is important, too. Sometimes I think the stress of trying to heal does more harm than good.

So, I do my best to hold myself accountable with grace, and also stay realistic. Will I ever experience remission? I don’t know. And if it gets to the point where biologics are the only option to keep my spine healthy, I’ll cross that bridge when I come to it. I do hope more treatment options become available, though, as we start to understand autoimmunity more.

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