When did you cease using topical steroids: Feb 2016
What type did you use: Hydrocortisone 1%, Betamethasone, Avantan fatty ointment
What is your favorite product for comfort? Epiderm, Tubifast Wet Wraps, safe soda bicarb of the bath and the body, Queen Bee Balm (Bee Skin Recovery)
What is the hardest thing to deal with during this condition? Enduring the worst pain of my life, oozing skin, shivering and feeling freezing cold even in hot temperatures, the skin snowing and rejuvenating every three days to raw skin, the intense burning, constant dilated capillaries that leave the familiar red mask of TSW, the lack of support from specialists and then being threatened we would be reported to child services for refusing steroids! Losing most of my friends.
What was the first thing you did when healed? I went to a BBQ for 2 hours, I was free, I was out of the house without wet wraps, I went shopping and tried on new clothes instead of staring on in pain watching my friends do what I couldn’t do. I lost nearly a year out of school, but now I’m healed and it’s all over.
Career: ECE/ Nanny
When did you cease using topical steroids: Feb 19th, 2017
What type did you use: Hydrocortisone, Ellidel, Protopic
What is your favorite product for comfort? Ice Packs, Aquaphor, burning my arms when itchy
What is the hardest thing to deal with during this condition? Having to re-home some of my pets, the draining of my self-esteem, having to go to bed with multiple ice packs and a fan since I can’t fall asleep otherwise, and the financial hardship having to spend tons on remedies.
What is the first thing you will do when healed? I plan on working out, eating whatever I want and not having to worry about a flare, go out with my friends, play with all my animals again that are making me flare up, and just enjoy life in general again.