Small victories!

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Most of my pain is due to hypersensitivity in my feet and lower legs. Touch hurts, shoes hurt, pressure hurts, I’ve had days when even a fan blowing air would cause me to cringe. Desensitizing my feet has always been my biggest battle, and yoga has helped me to not only get used to constant varied sensation but also taught me how to breathe and take my mind elsewhere when the pain gets really intense. That’s what this picture represents for me. It is so painful for my feet to intertwine like that, but I’ve been practicing this pose for a solid month, trying to find that balance between mind and body. Today was the first day that I was able to bear the pain and still take my mind to a happy place. I think there’s even a smile poking out from behind those toes! It’s days like these that I realize just how grateful I am for the small victories. They keep me going 🙂

Frustrating Lessons for Navigating the Healthcare System

You and me both Stitch 🙂

This will always leave me momentarily speechless, but there actually are a lot of people who believe that the healthcare system in the United States lives up to its optimal potential. Let’s just say that those people and I aren’t on the same page.   Crap, we’re not even reading the same book.  We may be in a completely different language, for goodness sake. Continue reading

Dealing with Illness and Disability in a Loved One

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There are so many invisible victims in the shadow of suffering.  It has taken me many years, too many years in fact, to realize just how difficult it must be for those of you that make up mysupport system, those of you who must watch me fall time and time again.  I don’t have much experience being on that side of the fence, but I am capable of recognizing that it would be devastating and scary as hell.  Our story is no different from yours or your neighbor’s or your great uncle’s in Arkansas.  At some point in your life you or someone you love will fall down, and you’ll have to be the one to help them back up.  Unfortunately, bad fortune is universal,and it certainly doesn’t play favorites.

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Its a game-changing kind of day!

When I woke up this morning, I knew I had an appointment to see a new doctor – a neurologist.  I haven’t seen a neurologist since I was probably ten years old.  Since I got the diagnosis of Reflex Sympathetic Dystrophy, I’ve spent a lot of time in the waiting room at pain management clinics.  There’s no cure for RSD, so pain management was the obvious route, and because these doctors gave me at least a bit of pain relief, we stuck with them and never saw another specialist.

Despite my doubts over the years of my diagnosis, there was never a doctor that questioned it.  I would meet a doctor and explain to them that my symptoms didn’t really match those of someone with RSD, and it was like the doctors had on sunglasses and could only see my condition with that color lens.  No matter what symptoms I was showing, I had RSD.  That’s the trouble with diagnoses: yes, they simplify processes and give a name to the face of someone’s demons, but once you get diagnosed, its difficult to move outside of that realm. Continue reading