Career: Mum and recently back to my old life (especially since skin is so much better) but part time, art dept for film/tv in NZ
When did you cease using topical steroids: December 15th 2015, as soon as I had read the ITSAN site.
What type did you use: I wish I’d paid more attention but mixed in there was hydrocortisone, elidel, elocon sporadically on and more so off for over 30 odd years.
What is your favorite product for comfort? Ice packs particularly at night for the itch. I didn’t use any products during the early months (1-6) as did moisturizer withdrawal, but since my skin took a turn for the better I have been using Avene products, namely the spring water spray and Xera calm moisturizer.
What is the hardest thing to deal with during this condition? Physically – the insane itch can drive you pretty crazy, the trance of the itch-scratch cycle is all consuming. The skin flaking. Just the general pain, discomfort and constant awareness of how your skin feels so foreign and sore and alien. Mentally – not knowing what’s really going on, the doubt about whether you’ll ever get better (you do though!) As the healing is not linear, eventually one day you may have calm skin, but the next it feels like you have regressed again with no rhyme or reason, so you have to dig deep to accept and just surrender to all this on some level. I am still trying to practice this 15 months in. Trust is a big one, that your body knows what it needs to do to heal. I am humbled by those whose journeys with this are really tough.
What is the first thing you will do when healed? I couldn’t wait to hold my baby against my bare skin and not have it make me uncomfortable or anxious or itchy. The healing was so slow to unfold, but I felt elated when I saw glimmers of my ‘old skin’ again, and so grateful for my body and what its been through. It was awesome to not feel super self conscious of going out in public and showing my face. To feel the anxiety ease off a bit. And every time I settle from a flare, even though it’s only for a day or so, I am still grateful my body can get there and hopefully will one day stay there.
Career: Creative Designer – had to leave work due to TSW
When did you cease using topical steroids: 01.20.2017
What type did you use: Hydrocortisone, escalating to daily use of Betamethasone and Elecon. Also had 3 month course of oral steroids and Tacrolimus
What is your favorite product for comfort? Avene Cicalfate Restorative Skin Cream has significantly improved my face and neck which were super tight, dry and flakey with slight oozing
What is the hardest thing to deal with during this condition? Due to debilitation I have had to move across the country to live with my mum to care for me. This means I don’t see my fiancé often and we have had to postpone our wedding. I miss him terribly.
What is the first thing you will do when healed? Marry the love of my life and return to my passion as a live performer (singer songwriter).