Career: unemployed due to TSW
When did you cease using topical steroids: August 23 2016 (third try)
What type did you use: I can’t remember every kind. I’ve been using for 29 years: hydrocortisone, prednisone, clobetasol, betamethasone, Elidel, Mometasone Furoate and tons of injected immunosuppresants like Bethaduo and Ciclosporine.
What is your favorite product for comfort? It changes, but lavender essential oil has helped as sleeping aid (I put it in my feet every night), zinc oxide when oozing and lately a spray called MR. Wheatgrass that I put on my skin when I get out of the shower and reapply every time I feel dry. Any other moisturizer, whether it’s a cream or oil, burns.
What is the hardest thing to deal with during this condition? Having the symptoms of the shivers, the oozing, the no sleep, the crazy diets stopping my life.
What is the first thing you are going to do when you are healed? Jump in the ocean, work out and dance without worrying about my sweat burning. Start working again! I became a therapist in the process 🙂 I want to help others.
Career: Unemployed for two years due to TSW
When did you cease using topical steroids: 17 December 2014
What type did you use: Diprosone and advantan (very potent)
What is your favorite product for comfort? Zinc balm and ice packs!
What is the hardest thing to deal with during this condition? The severity of my facial symptoms, the lack of independence, having to put my life on hold and the bloody heinous OOZE…
What is the first thing you are going to do when you are healed? I’m going to do everything I had to put on hold! I want to start working again, I want to go back to uni and get my masters, and I want to travel to Europe with my boyfriend!