I’m feeling a little sorry for myself today. I woke up with clearer skin on my front and itchy, rashy, miserable skin on my scalp and back. It sucks. I try really hard not to complain, not to be negative and to find the positive side of everything. To be honest, I’m just not feeling it today.
Dermatomyositis sucks. There I said it. It’s ugly. It’s itchy. It causes otherwise perfectly polite people to stare, in horror at my skin and ask all kinds of (honest) questions. I spent the entire summer last year agreeing that “yes, I do have a very bad sunburn” (I did not) or explaining that I suffer from a rare auto-immune disorder. Neither one is any fun. On the one hand, you have people thinking you must be some kind of a moron to go out in the sun without sunscreen. On the other, you are sharing your personal medical history.
It also sucks because of my poor, sensitive hands. I can hardly take plastic cards out of their slots in my wallet. I can’t keep my nails anything longer than freshly trimmed because I scratch in my sleep. I can’t get the cards out without their sharp edges digging into my very sensitive cuticles. I’m currently on a mission to find a wallet where I will be able to manage better.
It sucks because I don’t sleep well. I don’t feel well so I can’t sleep. I don’t sleep, so I don’t feel well. What a vicious cycle.
It sucks because I have to wear SPF 50 sunscreen ALL. THE. TIME. In winter, on cloudy days, in the car, in the office. The methotrexate makes me even more sun sensitive apparently. Great, a disorder that dislikes the sun coupled with meds that really, really dislike the sun. I feel like a vampire.
It sucks because even when I wore a UPF rash guard, long pants, a hat and sunscreen but didn’t wear gardening gloves, my hands broke out in one of the worst rashes yet. The rest of me was ok, but my poor hands. Sigh.
It sucks because after a year of treatment, nothing has worked. Once again, I am having to experiment because the doctors have no answers. I hate being a guinea pig but I’m willing to try anything.
Ok. Enough misery. I’m alive. I have friends. I have family. I have meaningful work. I have enough of what I need and am fortunate in so many ways. I have an auto immune disease but I live my life the best way I know.
Happy Methotrexate day. Hope it brings us both some relief.