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 in an ad that will promote clinical trials, so last month, I traveled from my home…
When we became parents, my husband and I started our own holiday traditions. One of our favorites was taking our two daughters to snag the plumpest pine tree, and then going home to enjoy everyone’s favorite meal of homemade breaded chicken cutlets, mashed potatoes, and gravy. Bellies full,…
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 scleroderma my entire adult life, and it’s changed the way I live, how I do my…
Dating in general is hard. You swipe right, swipe left, move up and down, or something like that. Maybe you even do the hokeypokey. And online dating? No way, no how. Dating with a chronic illness like scleroderma is exponentially more challenging and terrifying. It’s like going to a carnival…
“Hey, Mom, can you play with me?” my son, with his boundless energy, asks me enthusiastically, his eyes brimming with excitement. My heart is whole, and for today, I am still his favorite play buddy. Anyone with a chronic, debilitating illness will understand the following few words. “Sure, honey,…
The alarm on my phone starts its disruptive routine early, and the repetitive noise annoys me out of my slumber. While the rest of the world remains cuddled up for a few more hours of sleep, my husband and I drag ourselves out of bed at 3 a.m. to catch a two-hour…
I take immunosuppressants to stop my body from fighting itself and reduce the symptoms of scleroderma. But that also prevents my body from defending against bacteria and viruses. This makes me think of everything in a new way. After the first few months of taking immunosuppressants, I learned that…
I will never forget the day I applied for Social Security Disability Insurance. I remember sitting at my computer, willing myself to fill out the lengthy application. Growing up, it was instilled in me to work hard for what I wanted and never accept a handout.
“It’s time to start a more aggressive scleroderma treatment,” my local rheumatologist says, although I’m not prepared to hear it. She thinks we are losing the battle and need to fight back harder. But just like in the movies when the main character is given bad news, her words…
I lean closer to the mirror and steady my hand as I trace the waterline of my eyes. Then I step back to analyze my work, hoping the makeup has livened my tired face. I feel lost as I try to recognize the woman in the mirror’s reflection. I know…
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