We all may be walking beside each other, but our stories are never the same.
Work: Entrepreneur/Marketing, co founder of @sociallitevodka
Date of Withdrawal:
October 5, 2020
What type(s) of steroids did you use?
Steroid ointments – beta derm/lyoderm . One 3 week course of prednisone right before starting TSW
Are you on any other medication?
Do you have a supportive doctor?
What is/was your favorite comfort product?
Avene Xercalm, tee tree oil spray with Vaseline
What is the hardest thing you’ve had to endure during your withdrawal?
Oozing is the hardest symptom. Mental hardship is the hardest part – loss of self esteem, loss of ability to move, and do anything creates sense of worthlessness
What is one thing you are grateful for during the withdrawal process?
Forced me to slow down. Take care of myself. It made me truly take a holistic approach to taking care of health, perhaps something I never would have fully embraced as so important.
How did you discover you had TSW?
Eczema since birth. Steroids 38 years. They stopped working. My body was going crazy, eyes and face were massively swollen. I was given “emergency” prednisone. Rebound was horrific – the most terrifying 3 months of my life. My husband discovered Rapaport and TSW through research (a family doctor himself) – and my journey began. I have had it severe. All the symptoms. But I’m 29 months in – hopeful and feeling strong. Feeling like after what I’ve endured I can take on the whole darn world!!
What were the first tell tale symptoms you experienced?
As early as 2017 I had red, red cheeks / almost butterfly across my face, had no idea what it was no doctor could figure it out. Then after prednisone all of it – masssive swelling red face, oozing, chills, sweats – face so hard and swollen could not eat or open mouth, etc.
What is one memory during the withdrawal that you will never forget?
At about one year in, I got a brutal fungal infection on my legs. The tsw and infection combined put me over the edge. I couldn’t move or change my clothes and the itch everywhere was unbearable . I had my first true panic attack. I had thoughts that I was dying . My body was totally failing and shutting down it felt like. Being in the fetal position on the floor screaming and crying. I couldn’t bare another minute of the pain. It was a really rough time.
How is your TSW journey going?
I’m 29 months. I did just come out of 6 week severe flare, but I am definitely better than the first two years. I see progress. Less intense flares, longer breaks between massive flares (although never “normal”). I’ve tried Chinese Medicine, acupuncture, diets, baths, antihistamines, supplements – all at different times giving each modality time. Some things I believe have sped me along. Now, I am working with a naturopath who himself healed from TSW as a teen and became a naturopath to heal others! So I feel very hopeful.
If you had a call to action for the medical community, what would it be?
Research. Doctors will continue to do what they are educated on. Until there is published research proving TSW exists, nothing will change. We as a community need to find a way to fund this.
What is a pastime you use to help during TSW?
Audio books. Close my eyes and just listen. Walking every single day with hands in pockets for one hour.
What is something you wish to share with the community?
I don’t know anything that could possibly make a human stronger than years and years of chronic pain. This gives us strength, empathy, perspective on life, and what’s important. Gratitude for the smallest things. I never want anyone to go through this – but for those of us who have – let’s remember this ends for us and at the end we are so much stronger for it.
What is a quote you live by?
If you’re going through hell keep going – Winston Churchill
What resources help during TSW?
- Preventable Documentary
- Facebook groups
What is your instagram handle?
Thank you, Neetu.
We love you. We see you. We are you.