Comfortable in My Thick Skin

Untouchable

At our most primal level, we all just want to fit in and be accepted. As a kid with pink and purple broken capillaries (called telangiectasia) sprinkled generously all over my deformed arms and legs, blending in with the crowd was no easy task. I’ve encountered lingering glances…

Scleroderma Doesn’t Play Nice with Family Fun

It’s hard to find an enjoyable outdoor activity that my entire family of four can do together. First, there’s the eye-rolling protests about having to spend time with parents compared to the far preferable option of hanging with friends. This universal issue comes with the territory of…

Health Insurance: A Right or a Privilege?

Healthcare coverage is a regularly featured story in the 24-hour news cycle. People’s opinions vary widely on the issue, as do politicians’ thoughts on the matter. Debates rage, tensions grow, and deeper divides are formed as our government wrestles with this colossal controversy. Nestled at the heart…

If the Shoe Fits … It’s a Major Feat!

Buying a new pair of shoes used to be one of my favorite things to do. The unsightly red spots, telangiectasia, which are generously sprinkled all over my body, limit the clothing I choose to wear. Anything backless, strapless, sleeveless, scoop-necked, or low-cut is immediately ruled out. Being…

A Tale of Two Takes on One Trach

When you’ve been a “frequent flyer patient” for as long as I have, you learn how to navigate the perplexing world that is our healthcare system. For 32 years, I’ve been a prolific health care consumer (not by choice) and have seen the good, the bad and the…

Self-Deprecation: Needed Friend or Confounding Foe?

Last week, I began my column with an unusually large dose of self-deprecation. Exhibit A:  ‘If my body were featured in a circus sideshow freak attraction (that’s every woman’s fantasy, right?), the announcer might exclaim, “Ladies and Gentlemen, children of all ages, come see the spotted…

Scleroderma: Pondering Self-esteem and Gratitude

If my body were featured in a circus sideshow attraction (that’s every woman’s fantasy, right?), the announcer might exclaim, “Ladies and gentlemen, children of all ages, come see the spotted lady with the world’s skinniest limbs and largest belly!” I am covered with red and purple splotches…

Why Anti-Bullying Campaigns Matter

His face was scattered with crater-like acne scars and budding new pimples. I remember his beady eyes being a muddy-brown and void of compassion. The sinking feeling that rippled through me as we passed in our high school hallways is branded in my visceral memory. His name…