Scleroderma News Columns

April 7, 2021April 7, 2021

During Flare-ups, My Scleroderma Body Pauses Life

Scleroderma News Columns

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 ... Read more

March 17, 2021March 17, 2021

Sleeping on an Inclined Bed Leads to an Enormous Wedgie

Scleroderma News Columns

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 ... Read more

February 24, 2021February 24, 2021

This Rare Disease Day, I’m Asking Others to Help Us Be Less Rare

Scleroderma News Columns

“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 ... Read more

February 3, 2021February 3, 2021

How to Endure the Torture of Esophageal Testing

Scleroderma News Columns

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 ... Read more

January 20, 2021January 20, 2021

When My Disease Attacks, I Press the Reset Button and Move Forward

Scleroderma News Columns

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 ... Read more

January 6, 2021January 6, 2021

Acknowledging That This Time, I Need Help

Scleroderma News Columns

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 ... Read more

December 16, 2020December 16, 2020

Self-love Is the Best Love

Scleroderma News Columns

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 ... Read more

December 9, 2020December 9, 2020

Standing By My Mother During Health Challenges

Scleroderma News Columns

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 ... Read more

December 9, 2020December 9, 2020

Meds or No Meds?

Scleroderma News Columns

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 ... Read more

November 18, 2020November 18, 2020

My Diagnosis Was Gut-wrenching, but Life Gets Better

Scleroderma News Columns

The phone rang on a Friday night. I answered it thinking the call probably was from another annoying solicitor. Instead, it was the voice of the person who would introduce ... Read more

November 11, 2020November 11, 2020

Can Someone Pass Me Life’s Handbook?

Scleroderma News Columns

In my mom’s life, I am more than a caregiver. I became one at a time when she needed me the most. It was a role I willingly stepped into ... Read more

November 11, 2020November 11, 2020

Learning How to Recharge After Trauma

Scleroderma News Columns

Coming home from the hospital should be a time of smiles and celebration — especially after surviving multiple strokes and spending nearly a week in the ICU, as I recently ... Read more

October 21, 2020October 21, 2020

I’m Stronger Than Scleroderma

Scleroderma News Columns

Who am I? On some days, I don’t know how to answer that question. But I can tell you with certainty that I am not defined by my autoimmune disease. ... Read more

October 14, 2020October 14, 2020

So You Wanna Talk About Mothers?

Scleroderma News Columns

It’s challenging to inherit the mother’s role. Some moms fade in involvement as parents while others see their children well into their adulthood and continue to act as mothers till ... Read more

October 8, 2019May 6, 2020

With Scleroderma, Exercise Comes at a Cost

Scleroderma News Columns

My cardiologist has given me the OK to go back to the gym. I’ve been waiting for his clearance for a long time. Working out at the gym was how ... Read more