We all may be walking beside each other, but our stories are never the same.
Name: Jennifer Powers
Work: Self employed/Coaching business, but business has suffered majorly due to TSW
Date of Withdrawal:
Dec 1, 2021
What type(s) of steroids did you use?
Protopic, Elidel, Elicon, Prednisone, and many others (*did not specify if topicals were ointment or cream based)
Are you on any other medication?
No, way too much fear of medications now.
Do you have a supportive doctor?
What is/was your favorite comfort product?
What is the hardest thing you’ve had to endure during your withdrawal?
Hard to pick just one thing — probably the sleepless nights and feeling of going insane, depressed, panicked about how long the journey will take.
What is one thing you are grateful for during the withdrawal process?
The amazing people I’ve met in the TSW community
How did you discover you had TSW?
I was diagnosed with eczema at age 2. I was on and off of topical and oral steroids for 30+ years. I experienced symptoms of TSW 2-3 years before knowing anything about it. It was not until August/September 2021 when I went on a 10 day dose of prednisone to clear up my “eczema” before going to a wedding that I started realizing something was really wrong. By Day 3/4 of taking the drug, my skin was going back to its bad state. This was the first time that had ever happened. Through research and social media I came to read about TSW and officially started my TSW journey end of Nov/ beginning of December 2021.
What were the first tell tale symptoms you experienced?
What is one memory during the withdrawal that you will never forget?
I am still going through the withdrawal currently, and there are so many memories/PTSD from this experience that I will never forget. One memory is of starting my podcast and deciding to document the journey. I have been able to meet and interview so many beautiful people that are suffering like me and it made me feel so much less alone. I also have seen my own progress through documenting via photos and videos and it’s made such a difference in my mental state. On the negative side, I will never forget the time I took a plane ride and had zingers for 5 hours (very traumatic), or the one night early on that I was feeling like I was going mad from the itch to the point where I was having suicidal thoughts for the first time in my life. This has made me vulnerable like nothing else has, and there have been times my boyfriend and loved ones have had to care for me as if I was back to being a little child. I will never take anything for granted so long as I live, ever again.
How is your TSW journey going?
It’s going better now! I will be at my one year mark 12-1-22. The first 4 months were terrible. I took a turn around month 5, but then back down again by month 6 or 7. It’s so many highs and lows, but I’ve learned to just take it day by day, hour by hour, and practice lots of gratitude for what is going well rather than focus on what’s going not so great.
If you had a call to action for the medical community, what would it be?
To treat the WHOLE patient, not the symptoms, and under no circumstances run to offer steroids. ANYTHING and EVERYTHING else first before even mentioning steroid drugs, and if it’s a last resort, stress the importance of SHORT term use AND educate on the possibility of TSW which is worse than whatever condition they are trying to fix.
What is a pastime you use to help during TSW?
Taking walks, taking warm dead sea salt baths, and infrared sauna!
What is something you wish to share with the community?
I love every single one of you. You have my utmost respect. I hope you continue to heal and that you use whatever resources that bring you peace and comfort – I hope my own blog, TSWjourneytohealing.com and podcast, are in that group of resources you find helpful! But please know that whether or not you can see change happening, you ARE healing and your body and skin are working together WITH and FOR you, not against you. You are worthy, loved, and more than enough.
What is a quote you live by?
“Love yourself first, and everything else falls in line. You really have to love yourself to get anything done in this world.” – Lucille Ball
What resources help during TSW?
- ITSAN facebook
- Preventable Documentary
- Skin on Fire Documentary
- You Can Heal Your Life by Louis Hay (book)
- Things that I list on my blog (tswjourneytohealing.com)
What is your instagram handle?
Thank you, Jen.
We love you. We see you. We are you.