Feeling so good I think it’s time for a new About Me page! So… I had a hideously tough year in 2018. I spent about two months thinking I had muscular dystrophy and was dying, but it turned out I only had the super-rare autoimmune disorder dermatomyositis, which still sucked a lot. Basically my immune system […]Read More New About Me
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 […]Read More Feeling betterish
Feels a lot less interesting than I thought it might. The pharmacist said this is the “highest dose of prednisone that leaves you in the wakey talky world”, but I honestly haven’t felt much from it at all except a continuing decrease in my autoimmune symptoms, which is absolutely fantastic. The first few days I […]Read More 60mgs of steroids a day
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 […]Read More Just got my results back!
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 […]Read More What does dermatomyositis feel like?
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 […]Read More So what is dermatomyositis?