Newfoundland (Canada)
TONYA MOORES
Scleroderma Stories Issue 1
When were you diagnosed with scleroderma?
I think I have had scleroderma for a while, but the disease never manifested itself until I got older. When I was younger, I was diagnosed with “IBS.” I have hypothyroidism, and I had bad kidneys as a child and was hospitalized… it’s like I have been in and out of doctors’ offices for my whole life, but who knows? That’s the worst thing about this disease – it doesn’t give any answers on what caused it. Hopefully, there will be a cure in the future.
I first got diagnosed with scleroderma back in October of 2018. Before being diagnosed, I had developed these two dark tight spots on my sides. They matched each other. They spread very quickly down the trunk of my body to my thighs, calves, and feet, then up around my chest area and to some underneath my left eye. As of late, I have it traveling down both my arms as well, which has made my arms very weak. I find it hard to lift them above my head now.
What led to your diffuse scleroderma diagnosis?
When I was diagnosed, they first thought it was just limited to my skin. It was ok. While bothersome, it had the possibility of going away in a few years, so I had a good outlook.
Meanwhile at work, my right hand seized up, and I had trouble opening it. Eventually, my hand started turning many colors. I couldn’t perform my duties, so I had to be laid off.
That led me to start UV light treatments and PUVA treatments. They cleared up my thigh area but left behind the muscle damage. I find it hard to walk long distances.
Long story short, after many tests, the doctors concluded that I had diffuse scleroderma. That took me by surprise.
How has this disease affected you physically or mentally?
I was upset and mad; eventually, I accepted the fact that I had this. Life goes on, and I live each day as it’s thrown to me.
But, I’m amazed at how fast this condition progressed. In about a month or so, it spread all over my body. My GI tract is affected. I can’t eat large amounts of food, and I have horrid reflux. I have an echocardiogram coming up next month, and I recently had my pulmonary test done as well. I’m just so tired of seeing doctors.
This condition can really play on your mind. Some days, I find it hard to move. I’m always tired. I can’t do strenuous activities or my muscles will get very tight and sore. This affects what jobs I can do, and it limits my potential. In my last job, I was around a lot of cleaners and chemicals, which might have brought this out more.
What advice do you have for those with scleroderma or other chronic illnesses?
My advice is to stay positive and not dwell on the disease. You can either try to live with it or let it control you. Some days may be hard, but it’s important to stay strong and have a positive mind.
Hopefully my story helps other people recognize the signs of this disease.
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
