Today is 17 months. Things are mostly the same. I basically look like I have bad eczema. My skin looks and feels eerily familiar to what my skin was like shortly before I quit my steroids. I guess people looking at me would say- wow you have bad eczema! Rather than saying – holy shit what happened to you?
I’m still showering once a day and then moisturizing. I’m using less moisturizer overall and I’ve stopped putting moisturizer on areas that I suspect no longer needed. My stomach and middle of my back have had some strange little bumps coming up, which I suspect is related to sweating. I’m still struggling with sweating. We have had a weird issue with out heater turning on at night and making our room a sauna. I also suspected that moisturizer was clogging the pores so I have stopped using moisturizer there. I’m still too afraid to go without moisturizer elsewhere.
My worst spots are still my neck/upper chest, sides and arms. All of these areas are smooth and pale with spots of redness. The cracks in my side are still healing up, but they seem to be doing pretty well. I used a lot of heavy steroids on my neck and arms – more
than anywhere else on my body, so it makes sense that these areas are the slowest to heal. I’m still baffled by why my sides have been so bad- I never put steroids there. TSW has a mind of its own.
My left upper arm has a persistent eczematous spot that cycles through being red and inflamed, becoming rough and scaly, and then shedding. I’m still ooze free, which is just so exciting to me!
The lack of shedding/decrease in the amount if scaling is shocking to me. My arms have small sections that get scaly in the areas that I scratch the most. I don’t leave behind skin wherever I go. I got a car wash two weeks ago and there are just a few flakes on my steering wheel. C had declared that we can now do our laundry together again. I tried to take a picture of the scaly areas of my arm, but as I’ve learned, as fascinating as the scaling process is, it is very difficult to capture in a picture. My skin is no longer painful because of intense dryness. Not too long ago, hours after bathing and moisturizing, my skin would shrink, crack and peel off in massive quantities. It hurt. A lot.
Here are some quick pics I snapped to show what I look like today. I wanted to capture pics today because I’ve gotten pretty bad about my monthly update and C wasn’t feeling well this morning and I didn’t want to bother her with taking pics of me.
C spent some time putting together some “before and afters” to show progress. She is much more talented and patient at these kinds of things! All of the pictures on the left are from the first 6 months or so. All of the pics on the right are from the last 2-3 months.
Hope everyone is having a flare free/better day!
Progress seems to be continuing, albeit very slowly. I have made some big steps towards returning to a normal life.
1. No baths! Most importantly, I want to share that in the past week, I have only taken one bath. I have been taking a shower first thing in the morning. I immediately moisturize and I am good to go. My skin is so much less dry. I don’t have that feeling like I NEED to get in the bath before I can function. I took one bath last week as my skin was starting to crack and peel in a few places and I figured I needed a good scrub.
2. No boxing gloves for a few weeks now. For over a year, I have been sleeping with boxing gloves to keep myself from scratching in my sleep. I have been sleeping without boxing gloves for maybe 2 weeks now? Maybe 3? I can’t remember. It was always depressing when I would realize that I needed to buy a new pair of boxing gloves, because they were starting to get smelly from sweating. Everytime I bought a new pair, I would say “This is my last pair.” I have gone through 3 pairs in the last year and I think that the last pair will be my last!
3. Clothes. When I got sick, C and my mom put away all of my nice clothes into space bags and hid them. My wardrobe was replaced with a number of cotton long sleeved tshirts and turtlenecks, camisoles, cotton pants, and sweat pants for lounging. Every few months, I would trash shirts and pants that were heavy and greasy from all of the moisturizer. Last week, I cleared out a big bag of clothes and opened up the space bags and put a lot of my old clothes in the closet. I still can’t wear all of them, but it is exciting to see and remember all of the clothes that I have. I also have started wearing black again – I am still dry and a little flaky, but I can wear black and not have to worry about my clothes being covered in flakes. Yesterday I wore earrings! I haven’t been able to wearing earrings for a really long time because of my ears constantly oozing.
My skin is still mostly the same, a little splotchy and sensitive. It gets dry here and there, but it isn’t like the massive scaling and shedding that I was experiencing. Still no ooze. The things that seem to irritate my skin and make it temporarily flare are too much sun and sweat. If I get sweaty, my skin gets red and splotchy and burns. Still trying to figure this one out as I used to be very active and now that I am feeling better, I want to get back into it. But is it worth the irritation of my skin?
Anyways, hope everyone is hanging in there and doing well!