Comment on Living with AutoImmune Diseases by carmen.
At age 60 I never imagined I would look forward to days when there were no appointments on my calendar so that I did not even have to get dressed. I think I was born with a bit of OCD but these days I simply don’t have enough energy to care much about those things. After the birth of my youngest son in 1989 my hair began to fall out by the handfuls. I was diagnosed in 1990 with hypothyroidism and given synthroid. I began to feel better and the hair loss stopped. Many years later I developed lupus anticoagulant which caused a DVT and two PE’s that nearly took my life. Also at this time I began to have these lesions that appear singularly as a round to oval spot with a thin white scale on top. There will be a stinging pain prior to these lesions. The white scale peels off the next day or so and underneath is red. It itches but if I scratch there is pain. No one knows what this is. These lesions are now more frequent and while they used to be just on my left arm they are now on my left leg as well and I have had some on my face. Today there is one at the corner of my eye on the left side. Scary stuff. I have random pains that feel like someone somewhere has a voodoo doll of me and is inserting pins and pulling them out. And to say I am tired is the understatement of the year. Last week I had one day where I was in bed for 15 hours straight. I am up this week but I can’t do very much. I’ve gained a large amount of weight over the years. My last visit to the eye doctor documents dry eye and severe light sensitivity. My skin is dry and my hair is thin and baby fine. Then there is bone pain and muscle spasms. I take a lot of supplements and medications but not one doctor really knows what is wrong with me. The Rheumatologist recently ran a vast number of tests looking for sjogrens and lupus. Everything is negative. So I have the mystery sickness. She prescribed plaquenil and after reading so much about it I am afraid to take it. I wish I could wake up and this was a horrible nightmare and I could hop out of bed and take my 6 grandchildren to the park and enjoy them. I would settle for being able to clean my house by myself. It’s horrible for anyone to have a disease, whether we know the name of it or not. After reading this, I don’t feel quite as alone. Prayers to all.