36 Hours

Well, I am home. I left the house on Thursday at ten-thirty in the morning and pulled back in around four-thirty in the afternoon on Friday, so that was thirty six hours altogether, with over twelve hours of that on the road. Plus picking up and dropping off the rental car. I am beyond exhausted,... Continue Reading →


When we moved into the new house, some friends gave us a really cool hammock for the deck. It wasn't just one of those loose mesh things, but rather a canvas one hanging on a metal frame with metal bars at each end to stretch it flat. We'd always talked about getting a hammock when... Continue Reading →


I had my first EDS-related dream last night. In the dream, I was frustrated and annoyed because my left shoulder kept subluxating constantly. It didn't hurt, but there was a sort of shift-bump-click that kept happening every time I moved my arm and it was irking me to no end in the dream. Incidentally, this... Continue Reading →

Ending PT on a low note

This past Thursday marked the sixty day mark with my physical therapy; I was given the choice of continuing to come in every two weeks, or working on the exercises at home from this point on. I chose the latter option. I managed for as long as I could, but the crowded, noisy environment was... Continue Reading →

Cheese knees

I remember when I was a kid, there was this annoying game some of the boys in class would play where they would sneak up on other people and kick or hit the backs of their knees - not hard, but just hard enough to make their legs buckle. It was a strange and disturbing... Continue Reading →

Obstacle course

I know I have sort of dropped off the face of the earth for the past week or so; I have been busy procuring and organizing my medical records and gathering more detailed medical history from my family for the forms I have to fill out for the genetics center.  It's been a frustrating and... Continue Reading →

My bendy family tree… 

So I had the recheck with the rheumatologist a week or so ago; as I had already seen on the online portal, the tests for Sjögren's syndrome and Lupus came back negative. He's sending me to a geneticist to screen for Ehlers-Danlos syndrome.  I don't know whether that's his suspicion, or whether he just doesn't... Continue Reading →

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