Career: Unemployed due to TSW, I worked as a Front Desk Manager for an alternative medicine wellness center until 5 months TSW.
When did you cease using topical steroids: End of July 2015
What type did you use: fluocinonide, triamcinolone acetonide, hydrocortisone
What is your favorite product for comfort? As much as I hate using it, Aquaphor – I wish something natural worked better, but not yet.
What is the hardest thing to deal with during this condition? Not being able to look at myself in the mirror because of shame and disgust and pure fear that I would never look like me again. Being in pain and discomfort every single day, leading me down the long dark path of depression and being suicidal; hating your life to an entirely new level where you know you are no longer yourself. When you don’t complain about how you’re doing so others automatically assume you’re doing better, and when you complain too much others get annoyed or don’t really know what else to say to comfort you.
What is the first thing you are going to do when you are healed? TRAVEL, ENJOY LIFE & HELP OTHERS WHO ARE GOING THROUGH TSW! I am currently getting my Health Coaching certification (this is partially due to my TSW experience) and I hope to help prevent this debilitating disease while encouraging others who are going through the journey. I will never take life for granted again and will appreciate every single day in an entirely new light.
Career: Teacher and a server
When did you cease using topical steroids: May 20, 2014
What type did you use: I don’t know for sure. I know I used a lot of the mild strength creams for my face, then I used Clobetasol and Mometasone for a bit after the rash had started spreading around my body.
What is your favorite product for comfort? Vaseline and gauze and Cerave lotion
What is the hardest thing to deal with during this condition? The hardest part was the unknown and the loneliness. I also feel inadequate and like I’m not doing my job to the best of my ability. I feel like I’m robbing my students of an education. Waking up, if I was able to fall asleep, and feeling the pain and the itch immediately. From the second I opened my eyes, it began. From the second I woke up I started thinking, “I can’t do this today”. The mental struggle is harder than the physical. Every day I wonder how much longer can I go on, but in reality I don’t have many other options.
What is the first thing you are going to do when you are healed? The first thing I’m going to do when I’m healed is appreciate not being in pain. Appreciate everything around me. Waking up and getting ready to leave the house in 30 minutes. Showering. Getting in and out of the car easily. Not having dead skin surround me 24/7. Get a massage. I’m just going to live and appreciate life.