Where is everyone with this disease called Myositis? I feel so alone sometimes. I participate, no mainly lurk at a wonderful message board at the TMA site, but even then it's only a few people and they may not have what I have. Even if they do, it seems like we all react different to our disease and medicines. We seem to drift between flares, IVG's and medicine weaning up and down. We all seem to have pain and we are all so tired. My arms tire so easy from typing.

I say I have "Energy Tokens" . I hope to wake up with a certain amount everyday, but that isn't always the case. It takes so many tokens just to get out of bed, shower and dressed. If tokens are lacking, I may not stray far from the bed, forget the shower! Sometimes that is as far as my day goes. There has been days of laying in bed, not even turning the TV on. Too many lost days.


Other days I may have extras and I use them to get dressed up enough to be seen in public. Seems like you will always run into some jerk that says, "You don't look sick". I can tell they are looking at my fat body and thinking I am just overeating or not exercising is why a look like a Pred freak. It would take up too many energy tokens to explain so I move on.

On line people are searching for answers, doctors, and sometimes just shoulders. Shoulders we all have. How can we truly give comfort over the Internet? We can tell our fellow sufferers what happened to us and what medicine worked for a while. How long the latest flare lasted. Some come back and tell us they have been in remission. Some never come back. I often wonder if they are in remission; was the diagnoses incorrect, did they die? I would hate to die and people not know it. We all want to be remembered.

I ramble, but I want people to know I am here.