We all may be walking beside each other, but our stories are never the same.
Work: Lost my job but just started in a warehouse
Date of Withdrawal:
What type(s) of steroids did you use?
*not specified. Creams, orals, and injectables
Are you on any other medication?
Was on dupiexnt and working with rinvoq now
Do you have a supportive doctor?
Yes, but they are on the fence about TSW
What is/was your favorite comfort product?
Dead seasalt and i need to find a lotion
What is the hardest thing you’ve had to endure during your withdrawal?
Getting back to life again and not letting tsw consume me
What is one thing you are grateful for during the withdrawal process?
That i was able to listen to my body and not always look to doctors.
How did you discover you had TSW?
With lots of hours in the bath id be on eczema forums and came across people who looked like me and posted a picture someone told me I may have tsw. Doing my reasearvh i found itsan amd people like me and now have loved the #tswstrong we are strong together. Feels amazing even when alone im not alone.
What were the first tell tale symptoms you experienced?
Red skin sydrome head to toe. Weird metalic smell and zingers.
What is one memory during the withdrawal that you will never forget?
I remember my first panic attack laying in bed, my phone in arms reach. But i could not strech my arms without my cream my skin was so raw and tight i need cream on my skin to move that day I ran out of cream with my family sleeping and in there rooms. I remember rocking my breathing getting hard and it gelt like it would not end my chest getting tighter and every breath felt like it was it. How could I make it. From there i would always have stock of cream near by. Spending 400 a month just to be able to move. Or 5 hours in a bath to be able to get things done so i could move. I fear i will be there again. Ill bath still but always think of how I used the bath to just be able to move.
How is your TSW journey going?
Its still very mind boggling, am i in tsw or is it my eczema. I was good the last year on medication (dupixent and rinvoq) but being off now for a month my skin is making me question am i still in tsw??? But being in the worst for two years. I know i can do this without medication. But i question everything im doing. Everyone wants me back on rinvoq…..
If you had a call to action for the medical community, what would it be?
That we need to stop treating people with eczema with the same line of treatments and look into it inside rather then on the outside whats making me flair not to give me something to mask my flare but see why and what is making me flair.
What is a pastime you use to help during TSW?
Breathing alot and meditation always truing to look for the good to come and know this is not my fault. I became an active advocate to help my mind in tsw. To find a community that knows what your going through. And to know i can help just one person from going through what i did
What is something you wish to share with the community?
This has been one of the hardest and most challenging things Ive done in my life. I question a lot, am I doing the right thing for myself. But when you understand and see for yourself the rebounds of the steroids. And you have lived with eczema. You know deep down that something is not right, You know this dose not feel like eczema anymore. But Having doctors tell you its just bad eczema. Trust yourself! its your body and if you listen to it it will tell you whats making it flare. What makes it worse, you will find what will work for you.
What is a quote you live by?
Live laugh and grow.
What resources help during TSW?
- You have been amazing.
- Your documentry I would watch with everyone.
- TSW Atlas is so sweet. But the tsw warriors on facebook and istagram who advocate. Love everyone who just tries to bring awareness
What is your instagram handle?
Thank you, Alycia.
We love you. We see you. We are you.
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