Let’s Get Ready to Rumble in the Fight Against Scleroderma

The bell echoes loudly, signaling the fight’s start. The energy and stakes are high. Gloves on, two boxers face off with intense determination. Only one will be crowned champion.

Living with scleroderma is uncomfortably similar to being a heavyweight boxer. Every day is spent tirelessly preparing for the next doctor’s appointment. I’m constantly digging deep within my soul to convince myself that I will prevail against this relentless attack on my body.

Like a trained athlete, keeping positive helps me to stay strong mentally. My physical training may not be as advanced, but it is equally rigorous. Sometimes simply getting out of bed requires herculean strength and tenacity.

On good days, I push my body with muscular and cardiovascular training. Whether I’m jogging, weightlifting, or just mopping my floors, I’m preparing my body for the fight of its life. Only warriors and champions can live with scleroderma.

Lisa Weber hikes part of the Appalachian Trail despite having Raynaud’s and lung fibrosis. (Courtesy of Lisa Weber)

The fight begins at the doctor’s office.

The steel car door rattles open and alarms wail. I take deep breaths to calm my nerves as I approach the frigid waiting room. I take a seat and begin envisioning the victory in my head, arousing my inner strength.

“Mrs. Weber,” the nurse firmly calls out. Not quite as dramatic as the introduction of a titled boxer, even though companies are probably making millions off my medical care. I’d prefer the iconic voice of Michael Buffer as he cries out the famous words, “Let’s get ready to rumble!” That always inspires strength within me. But this match rages silently in my body.

If my life were a movie, this would be the part where inspiring music would start blasting, signaling the rise of a champion, just like in Rocky‘s monumental climb up a steep mountain of stairs while “Eye of the Tiger” by Survivor blasted in the background. The music grips you tight, makes you feel indestructible!

But no music plays for me as I make my way down the hall and into the cold, sterile room. Only my heartbeat plays a rhythm in this real-life feature.

I imagine it must be hard for a fighter to walk toward their opponent, knowing it all comes down to this moment. Their nerves must be wound as tightly as mine when led into the holding room to awaiting test results. There’s that feeling of uncertainty, not knowing if I’ll come out on top or be beaten down mercilessly.

Test results decide today’s champion.

Regardless of the fear, adrenaline takes over and my autopilot switch flips on. There’s no turning back. One of two things will happen now: I’ll either walk out of this office wearing my champion belt, or I won’t.

When I get good news, I feel like I can take on the world. Those victories fill me with the fuel necessary to continue growing stronger. It’s the bad news that breaks me down. It’s soul-crushing to know that I’m training as hard as I can, only to find out I’m still losing.

Almost every appointment is like this when you have a chronic, systemic autoimmune disorder like scleroderma. Even a routine visit to the dentist could end with the news that your body is absorbing the bones in your mouth, that your teeth will soon fall out.

Unlike a professional boxer, I don’t get much time to train between my fights. Some weeks I have one appointment and others I have up to four. I must always be ready.

Just keep fighting.

I can’t imagine a world where no one continued to strive after failing. Multiple investors turned down Walt Disney, believing his cartoon of a rodent wouldn’t ever interest people. If he’d surrendered to their opinions, we wouldn’t have Mickey Mouse. Many professional athletes, entertainers, and billionaires share similar stories. Despite being told they couldn’t achieve their goals, they persevered and rewrote the narratives others forced on them. That’s how I choose to live.

Scleroderma, you can beat us down and tell us there’s no cure. But we will still be the champions. We will continue to punch back and overcome your cruelties. And each time the fighting bells ring, we will push everything we have into you. We are stronger than scleroderma.

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Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to scleroderma.