Staying Alive With Scleroderma — Amy Gietzen

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…

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…

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…

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.

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…

When the COVID-19 pandemic hit the U.S. in March 2020, it was like time stood still. Many chronic illness patients were on high alert, constantly afraid of contracting the virus. Given the complexity…

As young adults, my friends and I used to play a drinking game called Never Have I Ever. The rules were simple: Someone calls out something they’ve never done. If you haven’t done it,…

My traveling days have been few and far between since I was diagnosed with systemic scleroderma in 2001. Now, it’s even more difficult due to the COVID-19 pandemic. However, I was invited to participate…

I am a scleroderma patient. Saying or writing that is hard for me. It took 20 years of being a patient to feel confident enough to say it out loud. I’ve had systemic…