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Season Finale Worthy

So, it happened again. Moebius syndrome ended up on television! Actually it did not end up on television, a really bad imitation of it did. It puzzles me that writers and medical advisors will go out of their way to “discover” these wonky diseases, then do a terrible job at them. See her eyes? TheyContinue reading “Season Finale Worthy”

Dressage-ing

Spent this weekend spectating at the Golden State Dressage show and CPEDI, watching all kinds of wonderful horses and riders, and making my paradressage classification permanent! I also tried my hand at some equestrian photography, I love photography although with fine motor and vision issues… my results may vary! I clearly need to figure outContinue reading “Dressage-ing”

Portland, I mean… Portland?

(Next to Normal reference. If you haven’t listened through the show and are at all interested in mental health issues and musical theater, do yourself a favor and listen.) So yeah, did Portland in April. It was cold, it was wet… but family, Moebius stuff… AND A LLAMA!

Year of the Pig

Goals are funny. I’m really not a competitive person, but I certainly am goal oriented. I think it helps me… focus? Or something like that. So goals: Piggles and I are aiming to ride the Grade II Novice A test at the ginormous Rancho Murieta CPEDI 1* in June. It’s big, it’s fancy… and theContinue reading “Year of the Pig”

What is my vision, and do I have a plan?

Sometimes I do. Hopefully more than not. Little snippets from LA in October, kind of summing me up in one swoop – #LibraryLife, a museum trip to the Broad, and an Idina Menzel/Josh Groban concert!

A (Partial) History of Me

This piece has been entered in the Patients Have Power Writing Contest run by Clara Health designed to raise awareness about clinical trials. I am passionate about this cause and hope it will help raise much needed awareness about the power of breakthrough research. The cause of my (primary) rare disease is unknown. There areContinue reading “A (Partial) History of Me”

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