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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? They … Continue 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 out … Continue 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 the … Continue 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 are … Continue reading A (Partial) History of Me

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