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Having a rare disease often means dealing with uncommon symptoms. Sometimes I get lucky and one of my specialists can explain and treat them. However, the mysteries of my scleroderma-stricken body usually leave my medical team scratching their heads. Every time I meet a new doctor, I leave the appointment…

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…

With medications, doctors’ appointments, and the hustle and bustle of everyday life, there’s no way I could remember it all if I didn’t have reminders. Most days I’m lucky if I remember to grab my car keys the first time I walk out of the house. I’ve come to rely…

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…

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 classroom door flung open, and the principal of the school where I work swiftly entered. Closely behind her was our school officer. Realizing there was some kind of emergency, I headed toward them to find out what my next steps were. As I approached the hall, I realized the…

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…

After three years, two denials, and over 12,000 pages of paperwork, I was approved for Social Security Disability Insurance (SSDI) on Jan. 27, 2021. I never thought I’d see the process to completion. Given my previous denials, I was unsure how the trial phase would go.

At the start of the year, I received a call from my local pharmacy. The lovely employee told me she was giving me a courtesy call because my prescriptions were very expensive. I figured she was referring to the fact that I hadn’t met my deductible yet. But then she…

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…