My last batch of pictures was taken after a neck flare up – actually what seemed to be worse than it has been in some time. No ooze or nerve pain, but it got pretty itchy and thick red skin. I though it was related to sweating, but I think that it was already flaring up because last night
I did another strenuous yoga class last night and had the same amount of sweat and my skin didn’t flare up.
Here is my neck today, which is a better reflection of what my neck/chest looks like on a normal day. It continues to be the worst spot on me in these later stages, but that is to be expected because I used a lot of clobetasol on it in my last 8 months of steroid usage.
It has been a while since I updated. 2 months actually. The reason I haven’t updated is that there isn’t too much to update. It seems that in the later stages of TSW, things slow way down. At about 15 months, I had a big turnaround. Things went from really bad to better. Since then, I’ve had improvements, but things seem to move at a snails pace. That being said, I am SO MUCH BETTER! I still look like I have bad eczema. My waist down is pretty much normal now. But my neck, upper chest and arms are eczematous. My neck is very sensitive to sweat and tends to get red after sweating. I have started exercising again, understanding that it will irritate my skin a bit. For 12 hours after a strenuous workout, my neck and arms will be splotchy. I feel like the benefits of exercise outweighs some skin irritation. I was really hesitant to start exercising once I had my turnaround because I really cherished my improved skin and I believed that the sweating would make it worse. But I decided to just go for it and I don’t regret that decision.
I can’t remember the last time I took a bath. <strong>It has been at least 2 months.</strong> My morning routine is as follows: I wake up, take a shower, rub off any dry skin, immediately moisturizer with cetaphil, dry for 10 minutes, and the. Get dressed and go. The past two Saturdays, I have gotten out of bed and gone straight to yoga without a shower. I’ve been waiting for that to happen and that was very exciting! On Saturday, I went to a particularly strenuous class and he instructor made he room a little too warm. My skin was already a little irritated, so my skin was very upset. My neck and upper chest flared up, but the next day, the redness had mostly subsided and the skin was thick from the flaring and scratching. This morning I woke up and It was cracked and mildly scaling.
On that note, I don’t have massive scaling. No more leaving behind big piles of skin wherever I go. Occasionally I get dry patches that scale and flake. But they are minimal.
I have thrown away most of my TSW wardrobe. All of that ugly 100% cotton stuff that was heavy from vaseline is now in the trash! I’m wearing my old clothes again. I’m wearing dresses, skirts, clothing that exposes my arms and legs. All of my old clothes have come out from under the bed and are now hanging in my closet. C has to deal with my numerous outfit changes and piling up of clothes.
I’m still itchy. It isn’t a bone deep, life altering itch. It seems like just a dry skin itch. My arms and neck are the itchiness areas. I’ve been itchy most of my life and this itch reminds me of the itch I experienced in the first 25 years of my life.
Also, my seasonal allergies have returned. I had really bad allergies in huge spring before TSW. Last spring, I didn’t experience any.
Overall, I’d say my skin is now <strong>better </strong> than my last few months on steroids. Last time I updated, my skin seemed to be where it was right when I quit steroids, when my skin was horrible addicted to topical steroids. I think I improve slightly each day. I’m not healed and I wonder what “healed” will look like for me. But I am mostly back to living my life and my skin doesn’t rule my life any more. I don’t cry, I don’t take painkillers, I don’t even take ibuprofen. I don’t slather myself in vaseline. My skin doesn’t really vary too much anymore – I still have good days and bad days, but there isn’t much of a difference between the two.
Also, the bad times seem so far away. I can remember that those things happened, but I can’t really remember how I felt. I remember crying and screaming from the pain. I remember the endless hours in these bathtub. I remember the stares from strangers. But I don’t feel trauma thinking about it. I’m not afraid of that happening anymore. It has been almost 5 months since my last bad flare. It really feels like the bad days are behind me.
<strong>Here are some pics from the last two months:</strong>
<strong>This is an example of what I look like right after I exercise and sweat.</strong>