We all may be walking beside each other, but our stories are never the same.
Name: Grace Beeby
Work: Practice Manager
Date of Withdrawal:
July 6th, 2020
What type(s) of steroids did you use?
Hydrocortisone – both cream and ointment, Beta cream, Mometasone, Dermol (some others when I was younger but I can’t remember their names). Prednisone – oral.
Are you on any other medication?
Do you have a supportive doctor?
Yes, but they are on the fence about TSW
What is/was your favorite comfort product?
Ice packs, soft long sleeve pajamas
What is the hardest thing you’ve had to endure during your withdrawal?
Not being able to exercise and therefore weight gain.
What is one thing you are grateful for during the withdrawal process?
My super supportive partner, family and friends. As well as the new understanding I have of others.
How did you discover you had TSW?
I started at a new gym and thought I was allergic to the cleaning products. I had heard of the name TSW but didn’t know anything about it. I googled how to heal my eczema naturally and googled TSW and found Preventable.
What were the first tell tale symptoms you experienced?
Not being able to go an hour without applying hydrocortisone to my lips.
What is one memory during the withdrawal that you will never forget?
Running from my office desk to the staff room freezer for ice packs in my first week. I had no idea what I was getting into.
How is your TSW journey going?
Good! Currently 2.5 years in. Coming into summer and can’t wait for the healing that usually brings! (*this was sent in December, down under)
If you had a call to action for the medical community, what would it be?
Take the time to listen to people when they tell you about TSW. You don’t have to believe it straight away but give the evidence a chance.
What is a pastime you use to help during TSW?
Ice packs and keeping my hands and mind busy!
What is something you wish to share with the community?
To anyone that has been through this or is going through this – you are incredible. Including the caregivers! This is not an easy journey and the lack of research out there can be really disheartening. You are a super star! Keep going and don’t be afraid to go back to medication if you need it. You know your body best.
What is a quote you live by?
Sure, it’s easier to walk down a hill, but the view is much better from the top.
What resources help during TSW?
- Facebook groups
- Preventable Documentary
- ITSAN website
- Instagram community
What is your instagram handle?
Thank you, Grace.
We love you. We see you. We are you.
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