Getting out and about

After some three to four months of not leaving the house alone (and really hardly leaving the house at all) I finally feel functional enough to go out alone on some minor errands and adventures. I can finally get in and out of my own low-to-the-ground car, so yesterday I took River (my car) to […]

Seeing the doctor, picking up the cats

Haven’t written anything for a bit because I took a trip to Iowa to see the doctor and ended up quite pleasantly distracted. Also tried caffeine again for the first time in two months and it made me feel surreally exhausted for the duration of the trip and not like writing. As it turns out […]

Feeling betterish

So two months into the prednisone and I’ve built up enough muscle that a lot of things are finally starting to feel almost normal, like showering and washing dishes and walking to the beach. Which is great! It’s really and truly a wonderful feeling to be able to lift things without strain (not the cat […]

Being zen and feeling better

I’m amazed at what a patient person I’ve actually turned out to be. I’ve always felt quite impatient when I couldn’t do something easily, or had to learn something new that took a while; I like doing things that can be done quickly and I like learning things that can be learned quickly. This whole […]

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 […]

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 […]

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 […]