Here are some recent pictures of my hands/wrists. Like many of us, I mostly used on these areas.
The first three are from early in the day, about 3 hours after waking up. The second batch are from after work the same day.
My skin looks like it is starting to get better. Still having random red/oozy back and neck days, but overall it seems that I am slowly coming out of this one.
I celebrated one year off topical steroids on September 14. In typical TSW fashion, I had a not too great day. My mom came into town to help – C and I both really felt like we needed the support. TSW is wearing us both so thin. We are exhausted from all of this.
The flare has kept on raging. It seemed like it was getting better everyday, and then this past weekend it worsened again. Ooze poured out of my back, neck and shoulders and the itch intensified. Today, it seems as if the flare is shedding off. We will see how long it is before it reddens and thickens again. If I were a betting woman, I’d say by the end of the day. I think it has been about three weeks since it began and it hasn’t really let up. Going to work all day has been torturous and at the end of the day I am so worn out and exhausted I can barely think straight. All I can do is lay in the tub and play candy crush. (Don’t even get me started on how candy crush is ruining my life).
I will write a longer, better post with better pictures. I jsut don’t have it in me to sit down and write and sit still for pictures. C often grabs the camera to take pictures of me when I am doing badly and it really upsets me. I know why she is doing it- she is doing it because she knows they will be valuable in the future. But standing still in the middle of a scratchathon is virtually impossible. It is hard to see the long term value when it is physically impossible for me to take my hands off my skin.
The itch continues to plague me. I can’t believe that I have been so itchy for so long. It is crazy. One full year of the most insane itch I’ve ever felt in my life. I’m surprised I haven’t had a total mental breakdown just by the insanity of the itch.
I would say overall, I am worse than I have been in quite a few months. This flare has been pretty nasty. I’m not as bad off as I was in November-February, but I am close to getting that bad again. I am oozing, I am red red red, and I am itchy as hell. I am also shedding insane amounts of skin. I keep telling myself that this has to be last the one. I think that mentality is holding me back. I think I need to focus on accepting that things are bad and that I don’t know how much longer they will be bad. It could be weeks, months, years? There is no guarantee that I will get any better any time soon.
Thank you to those of you who have reached out to me during this difficult time. I feel very alone and I often feel like I have no one to talk to. When I get a comment or an email, it makes me really happy and like people understand what I am going through. I hope you are all having a better day, free from flares.
I leave you with some recent pictures…
I’m just one week away from my one year anniversary. And I’ve been flaring pretty badly on and off for the last few weeks. I’ve even started oozing again from my neck, shoulders and upper back. This morning I was in so much pain after my bath that I was screaming and sobbing.
Is this a cruel joke?? I accepted a long time ago that I would take longer than a year to heal, but seriously?? Still full body flaring at 1 year? Still oozing, still crying, still itching.
I have to try to look at the positives here. My whole back is not oozing. I’m not as bad as I was in DEcember. I’m able to sleep. Im able to wear clothes.