A Champion’s Battle: How Competitive Discipline Helped Me Outrun an Autoimmune Nightmare
Karen
State: Illinois
Congressional District:
Diseases
Chronic Pain, Gastrointestinal Disease, Immune Disease, Rare Disease
Issues and Challenges
Karen has encountered: Invisible Illness
My Story
A Champion's Battle: My Journey from Competitive Weight Loss to Autoimmune Warrior
I’m an addict.
Competition runs in my blood. Winning isn't just a preference—it's my nature. But what truly sets me apart is my drive to be different, radically different.
In 2003, when two friends and I challenged each other to a weight-loss competition, victory was my only option. Every morning and evening, I'd run or cycle with unwavering discipline. While I never followed a specific diet, I monitored each morsel with hawk-like precision. Eventually, a friend joked that I survived on "twigs and berries" like a bird. She wasn't wrong—four bites and I'd feel satisfied. Sometimes just looking at pictures of food would quell my hunger. I wore this strange ability like a badge of honor, maintaining these habits long after claiming victory. But it was a sign.
By 2010, my body began sending alarming signals. Mysterious bloating persisted for months. Debilitating pain shadowed and twisted through me from dawn till dusk. Bone-deep exhaustion became my constant companion. By 2012, the pain and chronic exhaustion had confined me to bed for months, thus preventing me from working. I sought answers from one of Chicago's premier medical institutions, only to be dismissed. When some doctors wouldn't listen and others gave me information that was rubbish, I fired them and found new ones.
Without answers, 2016 brought even more bewildering symptoms: unprovoked jackhammer headaches, sudden loss of balance, workplace blackouts, unquenchable dry mouth, burning sensations while brushing my teeth, and more.
In 2018, my quest for answers turned into a relentless crusade. Between February and April, hospitals became my second home and office. A weekly visit would sometimes stretch up to four hours as specialists ran countless tests and doctors provided consultations. Even routine procedures became ordeals—lab technicians struggled to find usable veins for blood draws. I watched in agony as teams of up to six medical professionals hunted for a cooperative vein, sometimes resorting to my foot, the back of my hand, and in some instances using ultrasound guidance. "Excruciating" took on an entirely new meaning during these sessions. Finally, answers emerged—peculiar ones:
• Limited Scleroderma with associated conditions like Raynaud's (which I'd unknowingly had since 2002)
• A breast lump requiring surgery
• Chronic sleep deprivation
• A brain aneurysm
• Profound fatigue
• Occipital neuralgia
• Fibromyalgia
The diagnosis came with an insightful revelation: fibromyalgia and scleroderma are rare and incurable autoimmune diseases. Given my bias for problem-solving and action, I was pleased because I could create a treatment plan. This included surgery, sleep studies, invasive procedures, and medications. Then came a terrifying wake-up call—a glass of familiar red wine suddenly tasted metallic, triggering strange sensations and dissociation. Hours later, I found myself in the emergency room, fighting for my life. Suspecting my new medications, immediately upon my return from the emergency room, I stopped them all. Within days, my rheumatologist confirmed a severe allergic reaction to one of the drugs. She also revealed two other medications were competing and canceling each other, which led to the issues finding cooperative veins.
As I contemplated my path forward, one casual suggestion from my rheumatologist resonated deeply—exercise. With no specialized medications available for my conditions, exercise offered a glimmer of hope. That became my new competition—one against my own rebellious body.
I immediately hired a certified fitness coach specializing in autoimmune conditions. My non-negotiable commitment? Exercise every single day. Through surgeries, invasive procedures, international travel, work demands, chronic pain, crippling fatigue, and mental fog—I haven't missed a day since June 2018. This unwavering discipline has reduced my pain and fatigue by approximately 80%. Yet, I've learned a crucial lesson: while exercise diminishes my symptoms, my body resets to zero each morning. When I awake, it's as if I'm handed a memo from my body, informing me which part has been designated to punish me that day. Dutifully, I accept the challenge because I've come to realize that nightly, various parts of my body hold clandestine meetings to which I am never invited. While medications provide some relief, exercise remains the only consistently effective pain management medicine in my arsenal.
My diseases continue to evolve, sometimes bringing unbearable suffering. But I've crafted a perfect cocktail for living meaningfully despite these autoimmune adversaries:
First, I prioritize my health above all else—scheduling workouts before any other commitments, ensuring 7.5+ hours of sleep, maintaining an ultra-healthy diet, meticulously tracking my body's signals, and eliminating stress triggers, including toxic people.
Second, I advocate relentlessly for myself at every turn.
Third, I say "yes" only to experiences, relationships, and work that align with my life's purpose: helping others excel.
This journey has revealed what I now recognize as my ultimate calling—being a patient advocate who lives a transformative life.
My Motivation and Inspiration
I'm wickedly self-driven.
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