Journal

I am not to the point where I will take steroids. I have had a life long struggle with my weight and as long as I do n ot have current severe internal organ involvement....no steroids. This is a minor change, but as many know...this disease makes us change so many things in our lives (such as our activities) that I try to hold onto normal. This is a tiny battle.....I have clung to using the type of shampoo that will give my thinning hair the most volume. As we know, the hair does not come back where the lesions have been. I always had very fine hair, losing patches of it is not good. Right now my hair is very long in preparation for my upcoming wedding, and taking care of my precious wedding hair is a priority. Now the lesions are threatening to make me bald!

I am totally stressed about having a major flare for the wedding. Planning a wedding is stressful. My employer has downsized 2x already....stressful!!! Stress is so not good for me...

I am open to suggestions for how to manage facial rashes (wounds that wond heal) and headsores. Today I am starting to use Head and Shoulders as I have heard that it can help reduce secondary infection. Yeah thats all I've got right now.

Ahhhhhh......I am so sick of the ongoing battle with headsores and lesions!!!! My scalp is so tender it hurts to have hair, and the sores are taking over. I'm freaking out! I have so many sores in the front of my hair and they are working their way back to the crown. It feels like I have evil little demons pulling my hair out in little fistfuls over and over again. And to make it all that much better....my face is has more than a rash...I have a nickle sized lesion on the side of my nose...just to really make the dime sized ones just below my hairline look like nothing.

I feel like people are looking at me and are disgusted. I feel it affects my professional life and when my fiance returns............I look like a monster...a scabby....scaly, red inflamed....oozing gross freak!

I know others have it worse...but I am venting....and these aren't the worst lesions I've had....I had a huge one on my hand for over a year. I worry that people think I use crack or meth! Occasionally someone will joke that I have AIDS lesions or to stop hurting myself....I laugh it off...but it really hurts, because I feel ugly and in pain and I can't control it.