Why do I have this awful thing?

I've certainly been asking myself this question but the strange thing is I have a weirdly plausible answer. I'm doing what limited research I can, but the specialist I've been seeing is also looking into it and he should have much better luck. I got these candida injections, six of them (three in my toe …

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Things dermatomyositis has made hard

This has been absolutely excruciating. I know there are more painful autoimmune disorders out there (this has not been painful at all really) but it's really impossible to convey just how awful it is to experience your body getting weaker and weaker, your muscles smaller and smaller, and your capabilities less and less, and be …

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I took my stitches out myself

What a strange but oddly satisfying experience to cut and then to pull little plastic strings out from under your skin... I'm glad they are gone: they were bunching up the skin strangely and it's nice to more comfortably lie on my left side again. Cocoa butter to smooth out any scarring! Soon will forget …

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Just got my results back!

Drumroll... Yes I have dermatomyositis! Only someone else who also spent several months thinking they had muscular dystrophy can appreciate just how exciting that is. When I first went to the specialist he almost immediately thought it was dermatomyositis because he could see the redness on my hands that I had hardly noticed, and he …

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What does dermatomyositis feel like?

Horrible. It started pretty simply, I felt physically tired and my arms and legs just felt heavy. But then I started noticing that they were weak too--it was hard to lift my legs into my jeans, it was becoming harder and harder to lift dishes into the cupboard. Then my muscles began to degenerate in …

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So what is dermatomyositis?

Well if you look it up, which I have done only very very briefly, you will encounter all sorts of horrific pictures and prognostications. But as with anything the actual personal experience is quite different to what one finds on the internet. Basically it's an extremely rare autoimmune disorder affecting only a few hundred thousand …

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