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(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?…

Being a caregiver can be a huge balancing act. Some caregivers do this for a living, while others help family or friends who might need extra help each day. My family believes it takes a village to raise a child. This, however, applies to more than children. A village takes…

As my mother’s caregiver, I had to learn how to be there for her without allowing my ego to take over. Sure, logically it seems easy enough to avoid being egotistical while taking care of another human being. But for my mother’s most recent surgery, I had to learn…

I used to save my empty pill bottles, thinking a Pinterest craft would catch my eye and I would have a good use for my vast collection of rusty-colored medicine containers. Instead, my stockpile grew so rapidly I had no choice but to give in and trash them. Unless I…