I support rare disease day

    Rare disease day is here! This is the one day where I can celebrate my uniqueness. With a bunch of other uniquers. Haha! It’s nice to talk to people who have DM and get that ‘uh huh’ and ‘oh yah!’. Even though the word rare means rare1 re(?)r/ adjective 1. (of an event,
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Finally Broken

weeeeeee

We’ve been ‘moving’ all summer long and I keep saying “this is the home stretch” and “it’s down to the wire” and all these other ridiculous expressions and now it really is. I’m sick, no surprise there, and just weak as a cat. Woke up this morning at 6 restless as hell, spent forever being
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Finding Out Who You Are

I saw this quote today and it sparked a memory… I took this photo from the passenger seat of our car one morning on the way to the University Hospital upstate. This shot turned out to be our last trip up although we didn’t know it at the time. We drove up for 3 consecutive
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Johnny Depp Shows Some Love For JM (juvenile dermatomyositis)

First I gotta say WOO HOOO!! I have DM (dermatomyositis) and I know that there are only 20,000 adult cases of this in the US. It’s a rare disease and in being so, it goes unnoticed where we want it to be noticed-Mainstream. If a Hollywood-ite holds up a bracelet that says Cure JM the
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Chronicles of a New Sick Chick

    I’ve been going through an old journal/blog of mine that I had set to private. It was basically a place where I vented to myself (lol) and also as a symptom tracker. It’s weird to read through it, I forgot just how truly awful things were. I’m posting these as I think they
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