I really didn’t know what to expect as everyone’s journey is different. I thought better to prepare myself for the worst. I think the 1st week was the worst. The shock of what my body was going through was pretty scary. I thought I was going to die. At least I felt like I was. Haha I was pretty hysterical and inconsolable.
I displayed all the telltale symptoms:
- Red burning rash that stopped at my wrists. It covered the other 97% of me though.
- Frequent chills that made me shiver uncontrollably.
- Skin peeling and shedding.
- Super dry skin to the point where stretching caused splits.
- Ooze and more ooze, just call me oozma kappa.
- No longer able to sleep at night.
- Did I mention the insane itch that could not be appeased?
A week ago I saw another dermatologist who told me that I was just experiencing an extreme eczema flare (Nahh you think, doc??). He wrote me up a special prescription for steroids that allowed me to get a large quantity of it in one go. Then his actual words were to “guard this prescription with your life”. In my head I was laughing (because it was funny) and crying (because I was paying top $$ for this appointment) at the same time.
I think I accidentally lost the prescription on the way home. Ah well.
So my summary for Month 1 is that so far I am doing better than I expected. My skin just went through a crazy peeling stage.
A few days ago my face was so dry and scaly, my neck was the worst by far! It was all dark and it looked like I was lizard. However I was really good, I let the ooze dry and didn’t scratch it. Now I’m reaping the good will I had because after the skin peeled this is what my face and neck look like!
I know you can’t see very well (stupid bathroom light creating ambience) but the skin here is still a pit pink and a bit rough to touch but much improvement! I spent my shower gently rubbing away skin so that’s why it looks smooth. At the moment my skin here looks better than it feels so that’s a plus.
This is my wrist! It started spreading towards my palm so I’ve been trying really hard not to let to spread. I think anyone who can resist the itch of TSW deserves a medal.
My arms. It’s strange but the redness of my arms change quite frequently. I am in between flares I think as my arms are pretty calm compared to last week.
My poor scratchy leg. Very raw and painful thigh 😦 The other leg is the same. However I find the legs not as hard to deal with as the joints. They are the worst!
My belly and what it looks like when I can’t resist the itch 😦 You can see skin peeling away too.
I’ll try to post some better pictures soon in better lighting to see the progress. From a medical point of view, we TSW sufferers must be so interesting.
The skin is such a weird organ.