1.When did you start using topical steroids? And why?
As far as I remember, I started using topical steroids in mid-2014. Unlike most people who started getting eczema as a kid, I only started to experience it when I was already 27 years old. It all started when I got insect bites from a trek that I did in December of 2013. The bites morphed into rashes that became eczema later on.
2. What was the name of the topical steroid?
I can’t remember the exact kind, but it was a mixture of clobetasol and some other substance. The thing is, my dermatologist would just hand out the creams to me and tell me to apply them twice a day without discussing what they were and without warning that they should not be abused. I may have overused the steroids, as sometimes I would use them more than twice a day.
It was not until a few months later that I realized that these were actually steroids that I was putting on my skin. The same doctor also prescribed Iterax (I think it’s Aterax in the US) to help with the itching and sleeping problems.
3. Were you ever prescribed more potent steroids?
Yes. I decided to stop steroids in November 2014 when I consulted a holistic doctor. But in March 2015, I experienced my first TSW flareup and I ended up going back to a dermatologist. My face was so red and swollen, so I was desperate to feel better. She prescribed a clobetasol cream plus Prednisone. It worked like magic, but my skin would just become worse later on.
4. How did you find out about RSS?
I was searching for natural remedies online and came across Briana’s story. Before I found out about RSS, my holistic doctor had already told me about the possibility of a healing crisis, where my skin would get worse before it starts to get better.
5. What made you feel you had RSS?
The eczema started from insect bites on my arms and legs, and that was where I’d get the rashes. But after stopping steroids, I started getting bumps on my face as well and after a while, my whole face had become one big rash. It was red, swollen, and weeping the whole time. Then my skin would crust over and I’ll have these flakes coming off.
6. Were you diagnosed by a doctor? Did you have a supportive doctor?
My dermatologists would diagnose it as eczema or dermatitis and just give me medication for my symptoms. My holistic doctor, however, made me go through blood tests and assessed that what I was experiencing was chronic inflammation that stemmed from imbalances in my hormones. This doctor was very supportive in helping me overcome my condition with lifestyle changes, proper nutrition, and supplements.
7. What were your first symptoms?
Patches of red rashes on my face, arms and legs.
8. Is your family supportive? Friends?
I am so lucky to have supportive friends and family. My mom took care of me when I was at my worst and couldn’t take care of myself. She prepared my food, washed my clothes and helped me research natural remedies for my condition.
My friends would always consider my food restrictions when we go out for dinner. I appreciate the simple gestures such as letting me pick the restaurant so I’m sure there was something I could eat.
9. Have you ever been to a hospital for this? Why?
Thankfully no. There was just that one time when I went to the ER because the insect bites morphed overnight.
10. What has been the hardest part of this condition?
I’d say the hardest part was putting my life on hold to focus on healing. It affected so many factors in my life such as my overall disposition, my finances, and my self-esteem. I was used to being independent, so not being able to take care of myself was a painful blow.
11. How long have you been in withdrawal?
I first stopped steroids in November 2014, but I went back around March 2015 before stopping them for good. That’s a little over 2 years.
12. What do you use as comfort measures during this?
Epsom salt baths helped a lot to dry up open sores. I also used VCO (virgin coconut oil) to moisturize dry patches. I also cut my hair short so it wouldn’t irritate my face. Early last year, I discovered hiking and it played a big part in my healing. Being tired from the hike helped me sleep better and the following day my skin would always exhibit a marked improvement. I’ve been hiking at least twice a month since and I am almost completely healed now.
13. Are you employed? Has this affected your job status?
I was working in TV when this happened. I had to take a leave for 1 month, which extended to 5 months. I quit my job eventually.
14. Have you gone to therapy/wish to go to therapy because of this condition?
I didn’t go to therapy, but I did make major changes to my lifestyle.
15. If there is one thing you could say to another sufferer, what would it be?
Listen to your body. Whatever is happening to your skin is a manifestation of what is happening inside. My doctor also told me this, healing is marathon and not a sprint.
Thank you for such a wonderful interview, Keina!!!!!