Tag: Autoimmune blog

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 days each month so I could get IVIG and solumedrol infusions. The infusions were long (8+hours) and they really made me feel sick. The headachesmore

No, I’m totally not Greek at all. I was trying to be hip. Oh wait, hip’s not hip. Oh what? That movie was like big, like, a decade ago?? Haha, you know as I was writing that I thought, hey this is the funniest stuff! I do try though, don’t I? Today is our son’s 23rd birthday. He lives a few hours above us, and due to his work schedule and his fiancee’s work/school schedule, plus the fact that theymore

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 whole world will be asking, what is JM? And the awareness train leaves the tracks. Thank you Johnny Depp. Dermatomyositis is an awful disease, butmore

    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 might help someone who’s newly ill/diagnosed/trying to get a diagnosis. I really was frustrated, sick, in pain, and flat out tired. I think it’s normalmore

  I’m still sitting out back drinking my coffee and thinking. In a few hours we’ll be heading up north for my last visit with my rheumy before we move. He was my second rheumy and the first doc to really show that he cared. I was SO excited when he said he’d take me on as a patient. When I started infusions it was in his hall. The infusion nurses went on and on about just how awesome hemore

You have GOT to see this doctor’s response to all the nay sayers. Hilarious + Facts = I love it. Hope you do too!   Until next time,

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