We all may be walking beside each other, but our stories are never the same.
Name: Linette Roungchun
Work: Left job due to withdrawal
Date of Withdrawal:
December 2, 2018
What type(s) of steroids did you use?
Hydrocortisone, triamcinalone, elides, elocon, amongst others
Are you on any other medication?
Do you have a supportive doctor?
What is/was your favorite comfort product?
Cureve’s hot and cold pack and Briza Air Cooler
What is the hardest thing you’ve had to endure during your withdrawal?
Itch, Ooze, Insomnia, and Gaslighting
What is one thing you are grateful for during the withdrawal process?
The TSW Community (my boyfriend, Sean, who also has TSW). The NEA and ITSAN are included in this.
How did you discover you had TSW?
A friend had come across the brand new ITSAN website and told me to look at it because I sounded like what I was experiencing back in 2011/12. I looked at it and though it def sounded exactly like what I had, I was tired of the withdrawal process(I was a year in and the whole time thought it was a terrible eczema flare) and just wanted to get back to living my life. So when I went to a new derm they told me I would have died from impetigo if I had come a week later. They prescribed steroids and since I didn’t want to die I used it and basically was in survival mode until December of 2018 when I realized that all I could do to help myself was stop EVERYTHING. All the medications.
What were the first tell tale symptoms you experienced?
Rash returning with a vengeance- insanely intense itching, ooze, temperature regulation issues, zingers, insomnia, water felt like acid.
What is one memory during the withdrawal that you will never forget?
When I had to stop work after being independent living on my own for a few years, and had to fly back to the west coast with less than $30 to my name and had to return to my childhood home (where so much emotional and physical trauma took place) and at one very low point of TSW(I couldn’t even sit comfortably because I was oozing and sticking to everything) my own mother just didn’t believe how miserable I was and wouldn’t help me and instead yelled at me and I bawled and sobbed uncontrollably and even my own crying scared me because it was so rock-bottom-hopeless and miserable that it sounded as if I had lost my best friend/closest aunt/favorite pet.
How is your TSW journey going?
It’s still going! But after a lifetime of TSW on and off since I was a child, I am beyond grateful that I can see and more importantly feel that my skin and body are healing and are now stronger than they have ever been WITHOUT relying on any medications.
If you had a call to action for the medical community, what would it be?
Be open-minded. You are not the end-all-be-all authority of our health because humans, circumstance, environment, and technology are constantly changing. There is SO MUCH to learn beyond the classroom and what you are spoon-fed. We want to trust you, our doctors. But first you have to show that you trust us as the experts of our condition.
What was a pastime you used to help during TSW?
Getting lost in stories be it through the medium of tv shows, movies, musicals, or books. And being very active in the community and creating safe spaces for my a fellow warriors with Global Eczema/TSW Meetups and The Itch Factor.
What is something you wish to share with the community?
Do whatever you need to do to get through this difficult time. And think twice before eliminating so many foods because you will limit your nutrient sources and you need as much nutrients as possible to heal. Focus on your sleep and do/use whatever you need to beat that insomnia so you can heal.
What is a quote you live by?
Be the change you want to see in this world/do it for the 10-year old you.
What resources help during TSW?
- Instagram, Facebook Groups(be careful with these)
- Preventable documentary
- Skin on Fire documentary
- My Life During TSW doc/short film
What is your instagram handle?
Thank you, Linette.
We love you. We see you. We are you.
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