Day 120 Comments From “Friends”

Had a great weekend. I took my daughter to see Disney on Ice and went for a pizza afterwards. Skin was not even an issue.

I'm finding the withdrawal process slow and frustrating. My face has been peeling a lot and I think this may be due to the sunshine that we have been having. At night, my neck and scalp ooze fluid. I still have mild edema in my legs and wet wounds on my leg flexures. My eyes are slightly puffy and gooey.

Some days I don't feel any further forward than I did at the beginning, but I know I am because I have more energy than I did back then. I'm also able to go out and do more things without my skin stopping me. It still doesn't stop me feeling self conscious though. Yesterday we were going out and I started crying because I felt like a freak and thought that people were going to focus on my skin. I still went out though. My friends don't "get it". They think I have eczema and that I can cure it with creams, diet or sunbeds. one friend said I wasn't so happy or giggly anymore since I came off steroids and that I should use double the amount to get my old personality back!

I think I need a T shirt that says "This isn't eczema. it is Topical steroid withdrawal". People, well meaning as they may be, just don't understand. Even after I explain, they still think I have eczema!