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.

Articles by Lisa Weber

Disease Progression Stings, but It Won’t Defeat Me

“It’s time to start a more aggressive scleroderma treatment,” my local rheumatologist says, although I’m not prepared to hear it. She thinks we are losing the battle and need to fight back harder. But just like in the movies when the main character is given bad news, her words…

I’m Laughing at My Salt-and-Pepper Skin

Back in the late 1980s, I was listening to the iconic female hip-hop group Salt-N-Pepa as I entered my teenage years. Today, their words would be considered mild, but back then, tunes like “Push It” and “Let’s Talk About Sex” were a hot topic in the tabloids. Like most…

Scleroderma Can Be Overwhelming, but It Doesn’t Define Me

It was a particularly beautiful morning. The hot Florida sun was still low in the sky, and a light breeze kept us comfortable while we watched our youngest daughter play soccer. It was almost perfect. As usual, I was rudely reminded that my broken body needs constant attention. My bladder…

Fighting Chronic Illness With a Positive Mindset

The machine monitoring my vitals beeps annoyingly to alert the nurses that my blood pressure has dropped again. My limbs ache from the frigid air conditioning, and my body is sore from being held hostage in the hospital bed. Fear, loneliness, and pain begin to consume my thoughts once again,…

Living With Scleroderma Means Living With Grief, Too

My little girls sway back and forth in their ruffled dresses. My face is fixed with a glowing smile as I watch the home video of these sweet babies. They are both saying the word “marshmallow” at my request. Their mouths fumble the multisyllabic word, producing the cutest versions. I…

An Open Letter to My Late Friend With an Invisible Illness

Decades ago, you passed quietly through the background of everyone’s busy lives. My heart still aches for you, even more now. You see, I didn’t know what you were going through for all those painful years. Your invisible illness was just that — invisible. I didn’t understand it, and…

Pandemic Panic Is Real for the Immunocompromised

As the meeting doors open, I’m met with the coolness of a windowless, air-conditioned room. Normally, I would welcome this gift on a sweltering summer day, but today is different. I immediately question the purity of the air I’m about to breathe in. I reluctantly enter and scan the room…

Don’t Settle When Choosing Your Team of Doctors

Many books have been written about finding your true love. Yet, there’s not much guidance about finding the right doctors. I suppose this didn’t matter when I was healthy. Now that I’m chronically ill, the right doctor means life or death. However, when scleroderma forced me to seek out care…