Finding Strength – a Column by Lisa Weber

Back when we had to patiently sit through TV commercials, I would shake my head in confusion after hearing all the possible side effects of the medications being advertised. I was baffled that someone would be crazy enough to risk their lives for a prescription. Until I became that person.

I may not be able to blow out all 44 candles in one breath, but I did get to live another wish. I’m here, and I’m celebrating another trip around the sun with nothing but gratefulness and love in my heart. Birthdays no longer just tack a year onto my…

How many times have you asked yourself, “Is this scleroderma?” Odd sensations, abnormal changes, pain, and even visible deformities — there’s no shortage of strange symptoms with this disease. I used to embark on a fruitless journey to discover answers, spending hours researching and probing fellow patients in support…

The day after my high school prom, a group of us went to an amusement park to continue celebrating. After navigating the ticket line, I noticed a new attraction that looked like one of those free-fall water slides. As I looked up at the endless zigzag of stairs while shielding…

“Your life is controlled by what you focus on.” I read this Tony Robbins quote when I was diagnosed with scleroderma in 2014, and my takeaway was to focus on my strength and will to survive. I came across this quote again, eight years later. Only this time, I realized…

Note: The headline of this story was updated April 19, 2022, to clarify that scleroderma isn’t becoming less rare, but rather awareness of the disease is increasing. One evening in January 2014, I answered a call from my doctor’s office. After going over my lab results, a nurse nonchalantly…

Do you remember playing “house” when you were little? I have fond memories of each of my little friends choosing a family member to imitate, and together we would act out the different family roles. Some chose the parental roles so they could control the narrative. I probably shouldn’t announce…

It had been years since I’d stepped foot in a nail salon. Yet the moment the doors opened, I was immediately reminded how much I missed those days of being pampered. The beautiful crystals on chandeliers danced above me. The water features and serene spa music soothed my soul. With…

I couldn’t find our family’s teacup-size dog. She had only been out of our sight for a few minutes. I scanned the dark, fenced-in yard looking for this adorable, fluffy furball. My eyes finally fell upon her white body floating in the pool. She wasn’t moving. Time to save a…

Having a rare disease often means dealing with uncommon symptoms. Sometimes I get lucky and one of my specialists can explain and treat them. However, the mysteries of my scleroderma-stricken body usually leave my medical team scratching their heads. Every time I meet a new doctor, I leave the appointment…