Raela’s T.S.W. Journey

We all may be walking beside each other, but our stories are never the same.

Name: Raela Marie Villanueva

Age: 50

Work: Self-employed Holistic Wellness Guide; I was a full-time caregiver to my mother during TSW 7/8/2019 until moving 7/8/2022

Date of Withdrawal:

7/8/2022

What type(s) of steroids did you use? 

Topical steroid creams – Desonide Cream 0.05%; Triamcinolone Acetonide Cream USP 0.1%; OTC Cortizone-10 1% (hydrocortisone cream)

Are you on any other medication?

I do not take any medications, only supplements.

Do you have a supportive doctor?

Yes

What is/was your favorite comfort product?

Aquaphor and all natural salves I learned to make

What is the hardest thing you’ve had to endure during your withdrawal?

Hives! The constant itching from it was the worst, I would wake up scratching myself.

What is one thing you are grateful for during the withdrawal process?

I was introduced to the Whole30 elimination program by my naturopath. It taught me how to read labels, eliminate certain foods from my diet that were causing inflammation (gave up alcohol), and improve my relationship with food / stress eating.

How did you discover you had TSW?

I’ve had eczema since early 2000’s, used prescription creams sparingly. Eczema got worse in 2016 after my father passed unexpectedly, I became a caregiver for my mom. I was under stress and ended up in a unit for three nights January 2019 where they gave me a tube of OTC hydrocortisone, told me it was safe to use on my neck and face.

I took the tube home and used my prescription creams. Two months later, I had red skin, ooze, flaking skin, swollen lymph nodes, it didn’t feel like eczema. An online support group stated it was likely TSW.

What were the first tell tale symptoms you experienced?

Inflamed itchy red skin, swollen lymph nodes, ooze, flaking skin

What is one memory during the withdrawal that you will never forget?

I realized how quickly stress could affect a flare – while preparing to travel on a plane, packing, getting to airport on time, getting through the gate, finally on plane and go to the bathroom to see my upper body and face are completely flared and having to sit through that plane ride itching myself constantly, feeling embarrassed and helpless.

How is your TSW journey going?

I am 3.5 years TSW. My skin has healed so much. I do still flare but it is much more manageable. I know what steps to take to get it to calm down.

In the beginning, I was in denial, continued using creams out of vanity. Once I quit using, it was the most challenging journey. The depression was draining, I just wanted the pain to end. I voiced it in a post on social media and was glad I spoke it out. I received support when I didn’t think anyone would care or understand. I was not alone.

If you had a call to action for the medical community, what would it be?

That physicians / dermatologists / pharmacists need to be educated on TSW, the side effects of using steroid creams including OTC hydrocortisone, and that they should be able to give more holistic resources and recommend products without steroids.

What was a pastime you used to help during TSW?

Connecting with support group pages online daily; reading other’s stories and progress, sharing my progress. It felt good to know I was not alone and complete strangers were able to comfort with words or advice.

What is something you wish to share with the community?

The Wim Hof Method is the greatest resource that’s helped with reducing inflammation, boosting the immune system, plus much more. It’s become part of my daily routine – it’s better than medicine. It’s helped with mental wellness most of all, pulling me out of a downward spiral where I thought I needed to get back on meds. It forces you out of the mind and into the body, to be fully present – that is a gift. I am grateful to be able to share this holistic form of healing with others through workshops.

What is a quote you live by?

“If we always choose comfort, we never learn the deepest capabilities of our mind or body.” -Wim Hof

What resources help during TSW?

  • Preventable
  • Whole30
  • Medical Medium
  • online support groups
  • ITSAN
  • the Wim Hof Method (breathwork, cold water therapy, commitment)
  • naturopath
  • friends

What is your instagram handle?

@raela.marie

Thank you, Raela.

We love you. We see you. We are you.

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