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"I have decided to enjoy what life I can as long as I can and to not spend time worrying about what is going to happen next." Quiltfairy.


Falling of the Edge of the World

Posted by Amanda Thorpe , 22 June 2012 · 6,877 views

On day I had a life and then... Na, too clichéd, need something different. Once upon a time there was a (insert description of me) and she was (insert description of my day and make sure you include that tall latte or two) then along came scleroderma (insert your own expletives here and make sure they’re a satisfying mouthful)...

In August 2012 I will have been diagnosed with systemic scleroderma and morphea for five years. In my early days medical professionals and others bandied about what I now call the medical myth, that after 3 to 5 years scleroderma plateaus, not only is this not my experience but I don’t actually know anyone else who has experienced it either. Sure some get better but it takes way longer than this and the getting better does not mean getting your old life back.

What you eventually do is take the remaining pieces and create a semblance of a life that hopefully can be described using words like quality, enjoyable, different, one tall latte instead of two...
If pithy little phrases aren’t doing it for you right now join the club. The truth is that I am tired of being tired, being in pain, being unable to plan anything, being unable to (insert your own descriptions and/or expletive here making sure they’re a satisfying mouthful).

I feel like I have fallen off the edge of the world (last pithy phrase I promise) and am waiting to rejoin it again at some future point. When I return, and I say when because I will, I have no idea what it will look like but boy oh boy, it’s gotta to be better than this!

November 2015

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