Sandra Nunez
Florida (United States)
SANDRA NUÑEZ
Scleroderma Stories Issue 1
When were you diagnosed?
I got diagnosed in 2002, but I feel that I have had scleroderma my whole life. At the time, my kids were five and nine years old (now, they are 23 and 27). I was living in Las Vegas as a single mom.
My hands were swelling up, and my joints were hurting. Once diagnosed, I got sick hard and fast. I had gangrene on both hands and almost lost four fingers. The doctors had me on a lot of medicine.
I thought, that’s how my life was going to be, and then I’ll die. I had depression and anxiety – a breakdown.
How has your outlook changed since then?
Eight years ago, I had a life-changing moment that caused me to get off my medications. I returned to working out and won a modeling contest five years ago. I became a body painted model at 49 years old and have done many shows since then. I model often for print.
In the midst of my illness, I went to college and received my Bachelor’s Degree.
For the past four years, I have volunteered for Guardian Ad Litem. I advocate for foster teens. My kids and all of the foster kids in the system are what drive me.
I am no longer depressed or anxious. For the past seven years, I have had a blog on Facebook called “Living La Vida Scleroderma”.
Could you please describe that life-changing moment and how it motivated you?
It was a religious experience, so personal. Once I got off my meds, my mind was clearer, and I started feeling better. As for modeling, I’ve been modeling since I was 18 years old in New York City. Once my mind became clearer, I returned to it.
Having my blog has helped me motivate my scleroderma community to not give up. They are what motivated me. I got tired of reading about people feeling like their lives were over.
Because I was physically fit before scleroderma and I had been a certified aerobic instructor in the past, I knew all of the psychological benefits of a healthy lifestyle. That also motivated me to start working out again.
How has scleroderma’s effects on your appearance affected you and your confidence with modeling?
Being a body paint model is what helped me tremendously love and see my body in a different light.
When I first got sick, I had a hard time seeing my face and hands change. I was on a medicine called thalidomide that loosened my skin. My face became looser as well, moving from Las Vegas to Florida.
When I got body painted, all people saw was the art. This helped me to see myself in a different light.
Once I found something I love again, it caused me to exercise to be fit for model gigs. I got to the point where I don’t care what my hands look like. I accepted the change. Most people who know me didn’t notice my hands until I told them.
What kinds of doctors have you seen, and what medical workups and treatments have you had?
I have seen a cardiologist, rheumatologist, G.I. doctor… I haven’t had any other treatments. Other than thalidomide, they tried methotrexate; but, it was not good for me, and that was it.
What advice do you have for those with scleroderma or other chronic illnesses?
To not rely solely on what doctors say. Do your own research. A positive attitude can go very far. Don’t dwell on what you once were able to do. Find love and passion in something new.
I also want to share one more thing. I know I am very sick; I don’t pretend that I healed myself. I also don’t think that if you do what I did, you’ll get better. I just think that psychology and mental health play a big part in helping us cope and find other things to focus on.
Be sure to follow us on Instagram and Facebook (@sclerounited) to see more scleroderma warriors’ journeys in our weekly Sclero Sunday series.
Are you a scleroderma warrior? We’d love to interview you for Scleroderma Stories! Please visit tinyurl.com/share-my-sclero-story or email us at contact@sclerounited.us