Finding Strength – a Column by Lisa Weber

Lisa is the married mother of two beautiful girls. She holds a master’s degree and currently teaches third grade. She is extremely passionate about overcoming challenges while living with a rare autoimmune disease called scleroderma. This systemic disease attacks her entire body inside and out. Still, she manages to continue doing the things she loves: cooking (poorly), building furniture, jogging (slowly), and making clothes. She will tell you everything she does is perfectly imperfect! One of her life goals is to help raise awareness for rare diseases and to continue her personal fight to survive and thrive until a cure is found.

Celebrating Signs That Scleroderma Awareness Is Increasing

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…

I’m Scheduling Free Time, Not Just Appointments

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…

CellCept Ended My Love Affair With Pedicures

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…

Battling Scleroderma Doesn’t Make Me a Hero

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…

Scleroderma Has Dented My Ego and My Forehead

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…

Smart Technology Helps Me Outsmart Scleroderma

With medications, doctors’ appointments, and the hustle and bustle of everyday life, there’s no way I could remember it all if I didn’t have reminders. Most days I’m lucky if I remember to grab my car keys the first time I walk out of the house. I’ve come to rely…

I Wish ‘Feeling Better’ Was Permanent

Cradled in my husband’s arms is one of my favorite places to be. His 6-foot-2 frame engulfs me in a blanket of warmth and safety. When I’m in pain, his cuddles calm me like a weighted blanket. On rare occasions, I have the opposite of a flare-up: I’m…

Learning to Catch My Breath With Interstitial Lung Disease

I stare at the two flights of stairs in front of me, wishing there was a magic elevator. With no other choice, I start climbing, slowly. Suddenly, my breathing is shallow. I inhale and exhale rapidly, my lungs desperate for air. Grasping the handrail, I steady myself and finally reach…