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.

The best scleroderma caregiver knows when to just love me

We toasted to 18 years as a married couple while looking out over Tampa Bay, Florida. My amazing husband, Ross, had planned out every detail, from the surprise dinner reservations in the city to the romantic sunset-watching at the park. If you know me, you know pulling off a surprise…

Why Is It Hard to Have Compassion for Ourselves?

I sat on the shower floor in complete exhaustion, a scrubbing brush in one hand and a natural disinfectant in the other. Physically, I was at my breaking point. But the shower was only half-done. It’s tough throwing in the towel, but my body sometimes just doesn’t cooperate long enough…

My Take on How Empathy Wins Over Sympathy

Scleroderma knows how to be a Debbie Downer. I can be enjoying a moment and BAM! Some debilitating pain or body malfunction pops up to ruin it. I can’t control when I’ll need to hit the pause button on our fun, but I can control how I approach the…

Changing My Perspective Gave Me My Life Back

There’s always a dark cloud following me around. It’s the reminder that scleroderma has my life clock ticking a little faster. Most of the healthy people I know don’t quite understand this internal struggle. I can’t even count how many times I’ve heard, “Nobody knows how long they have…

Learning to Say No Can Save the Holiday Season

All the bedroom doors were closed and everyone was tucked in under their warm comforters. Except for me. I had taken on the 2013 holiday season like it was another full-time job. Without enough daylight hours to squeeze it all in, I was working the graveyard shift and bleeding myself…

Lung Disease and Fragrances Don’t Mix in My Life

The sweet little boy approached his desk. As I looked up to greet him, a wall of cologne slammed into me like a wave from a tsunami. Immediately, I began coughing and gasping for air. That may sound like an overreaction, but it’s exactly what was happening. My lungs seem…