We all may be walking beside each other, but our stories are never the same.
Name: Katy Doran
Work: 8th grade Language Arts teacher. I did not lose my job, but I did have to take an extended leave after the birth of one of my children due to flaring TSW.
Date of Withdrawal:
What type(s) of steroids did you use?
Hydrocortisone, triamcinalone, (various creams and ointments), prednisone, kenalog (injections)
Are you on any other medication?
Do you have a supportive doctor?
What is/was your favorite comfort product?
Avocado oil, Hu Zhang Shui (from Dermatology M)
What is the hardest thing you’ve had to endure during your withdrawal?
Physically – the intense and relentless dryness, flaking, and cracking.
Emotionally – feeling like I lost myself to my skin condition, missing out on life, and just the utter lack of any control.
What is one thing you are grateful for during the withdrawal process?
My support system, namely my husband. I am married to a wonderful partner who has loved and cared for me unconditionally through every hill and deep valley of TSW.
How did you discover you had TSW?
I grew up with mild and very occasionally moderate eczema, so when my entire body suddenly erupted into a bright red, weeping, flaking, relentless rash in my mid-twenties, I knew it wasn’t just “eczema”. Still, it took 3.5 years before I learned about TSW, decided I had it, and stopped all forms of steroids. I flew to LA from Iowa in May 2012 to get an official diagnosis from Dr. Rapaport.
What were the first tell tale symptoms you experienced?
Unrelenting red rash covering my entire body (that not even oral steroids could quell), total loss of moisture to my skin causing all over flaking.
What is one memory during the withdrawal that you will never forget?
I spent so much time in my bathtub, staring up at my ceiling. One evening, I fixated on a spot of mildew creeping from a corner. The pattern looked like lace. I figured that if we didn’t get that mildew cleaned up, it would cover the ceiling in no time. And that’s what I felt TSW was doing to me. I didn’t even know I was addicted to steroids at the time, but I knew that some unwanted, ugly, foreign poison was creeping through me, and that I just had to figure it out.
How is your TSW journey going?
I am doing very well now (it will be 11 years since stopping in March 2023), but I have many, many ups and downs. I don’t use the word “healed” anymore, because I’m just not sure it applies in my case. My body has suffered, and the repercussions have gone well beyond my skin. But I live a full life, and I’m happy, and right now I feel amazing and free.
If you had a call to action for the medical community, what would it be?
No one’s skin has to be perfect! If someone has mild eczema, let it be. Teach them how to manage, prevent, and accept it.
What was a pastime you used to help during TSW?
Lots of Netflix! Other times writing, reading, or just taking a ride in the car.
What is something you wish to share with the community?
Somehow you will get through this. I don’t have advice really. Everyone’s journey and preferences are different, but what I do know is that despite all the dark moments where you feel like you are trapped in the bottom of a pitch black cave without any way out, one day you will find yourself at the surface again, blinking into the light.
What is a quote you live by?
I don’t have one!
What resources help during TSW?
At first, it was the ITSAN forum and website, because that was all there was! I “met” other warriors and some of us started emailing each other and/or blogging about our experiences. Now I am in Facebook groups and follow lots of TSW warriors and related practitioners on Instagram.
What is your instagram handle?
Thank you, Katherine.
We love you. We see you. We are you.