Author Archives: Amy Gietzen

Remembering Cat Davis, My Dear Scleroderma Friend

Have you ever met someone and felt like the stars were aligned and everything was right in the universe? That’s what it was like to meet my friend Cat Davis. In 2016, I was in Washington, D.C., for Capitol Hill Day, an advocacy event sponsored by the National Scleroderma Foundation. I…

Talking to My Family About End-of-Life Decisions

Twenty years. That’s how long I’ve been living with scleroderma. That’s half of my adult life! Over the years, I’ve learned how to cope, be it physically (not being able to do things without help) or emotionally (living with a disease that changes your entire life). I’ve tried my…

Marriage and Children: Are They for Me?

I never was the girl who aspired to be a wife and have children. That lifestyle was never on my radar. As women, we often hear other women saying, “I’ve dreamed about being a wife or a mother since I was a little girl!” That was definitely not me. When…

Taking Life One Breath at a Time

I can’t breathe, literally! At times I feel like I’m drowning in my own body. Living with scleroderma can be complicated — not because of the disease itself, which has a mind of its own, but mostly due to symptoms and side effects acquired along the journey. Early on in…

Scleroderma Patients Deserve to Be Heard

When people learn that I have scleroderma, they tend to react in one of two ways. Some offer pity and sorrow and treat me as though my life were over. They’ll look at me like I’m a lost kitten or mistakenly assume I’m now dependent on other people’s mercy…

My Love of Food Has Caused Me Heartache — and Heartburn

Eating is a sacred ritual in my life. I live for the aroma of freshly baked rosemary bread or the first bite of homemade chocolate chip cookies. Between the salty dough and the semisweet chocolate, the flavors are almost indescribable. I am also passionate about trying new foods. But eating…

Low Self-esteem Is Another Challenge I’ve Had to Face

I like to refer to myself as a candy-coated treat: a hard shell on the outside with a soft, gooey middle. Since being diagnosed with scleroderma, I’ve often had to toughen up my hard shell to take on the difficult changes — like hand and facial deformities — this disease…

With Scleroderma, the Pain Is Relentless

Picture in your mind the most painful thing that has ever happened to you. Now zero in on exactly what the pain felt like, looked like, or even smelled like. For me, there is no greater pain than having ulcerated wounds. I never really knew the feeling of true…

Art Is My Outlet for Coping With Scleroderma

When I was diagnosed with scleroderma at 19, it was dumped into my lap. The doctor simply looked at me and said, “Get your affairs in order and work as long as you can. Scleroderma has no cure and will ultimately take your life.” To say I was affected mentally…

Scleroderma Offered Me a Path to Self-acceptance

We all face a lot of pressure to appear perfect — educated, attractive, healthy, capable, and independent. This can be a big pair of shoes for a “normal,” healthy person to fill. Now imagine how difficult it is for someone with a chronic, debilitating illness to check all of those…