It was one of those “oops!” moments — the express elevator down to your gut when you realize you hit “Reply All” by mistake. My inbox dinged — a lame substitute for the “You Got Mail” jingle — and I read the message in which the sender referred to me…
“Don’t worry. This will feel like a pinch.” Sitting in the sterile room with a tourniquet wrapped tightly around my arm, I stared intently at the legion of vials awaiting filling. The pinch did not feel like a pinch; it was more like a bee sting. As the lab…
Along the street lined with neatly planned townhouses, an effervescent spirit zigzagged through the households at midday. Every person under the age of 8, including me, felt hackles rise up on the backs of our necks. A tinkling of chimes, a muffled cry. My eyes widened. “Ice Cream Boy!” I…
(Sung to “Defying Gravity,” with apologies to Stephen Schwartz.) Something has changed within me Some parts are getting tight I’m through with tiny buttons Give me sweatpants day or night. Too late for second-guessing Too late to go back to sleep It’s time…
Messy is the best word I can use to describe a flare-up caused by scleroderma. My home, my thoughts, my life — they all unravel, and it’s messy. When my body is weak and consumed by aches, I spend a lot of time under blankets. During a flare-up, my…
The room is dark. My feet are tingling with pins and needles as they dangle off the foot of the bed. For a moment, I convince myself that I can stay like this for a few more hours. I pull my knees toward my chest to bring my feet back…
“You’re imperfect, and you’re wired for struggle, but you are worthy of love and belonging.” Brené Brown said these words, but they belong to my heart. The last day of February is dedicated to raising awareness for rare diseases. Rare Disease Day helps people who live with incredible…
When something gets stuck in your throat, you’ll do everything imaginable to dislodge it. That’s why when someone intentionally threads a tube through your nose and down your esophagus, you really have to fight all of your basic instincts that want to remove it. Scleroderma can wreak havoc on the…
There’s an ugly truth about chronic illness. It hides from the rest of the world behind closed doors. Only caregivers and those suffering truly understand. It’s the suffering that happens when people are forced to mourn the life that was stolen from them. And it’s the…
Sometimes life deals a hand that tests us. We then look for ways to overcome those challenges. But what do we do when the bad news keeps coming? How do we keep moving forward when we feel like more weights than we can carry have been placed upon our shoulders?…
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