Living with scleroderma has resulted in many new experiences, opportunities, and challenges for me. Since my diagnosis in 2001, I’ve spent much of my time educating others about how to manage symptoms, decrease stress, process mental health issues, navigate treatment options, and improve quality of life.
My mom has always instilled in me that beauty is in the eye of the beholder. When I was a child, she’d say to me, “What may be beautiful to one isn’t always beautiful to another, but that’s OK because that’s what makes people unique.” Amy makes goofy faces…
The feeling of overheating while being cold at the same time isn’t an unfamiliar symptom to me. For almost a decade, I have dealt with hot flashes due to medication-induced menopause. However, severe sweating strictly at night with symptoms of extreme internal heat, clammy skin, sleeplessness, and cold…
For years now, I’ve lived with a broken heart. At times, it’s physically painful. My discomfort includes aches, sharp and stabbing pains, fluid retention, swelling in my extremities, and difficulty breathing. But living with a dysfunctional heart is nothing compared with the emotional toll my heart disease has left…
Scleroderma is a disease that takes no prisoners. Not only does it attack the body and its vital organs, but it also causes the body to fight itself, wreaking havoc on skin cells, tissue, and the defense mechanisms that fight illnesses. I think of it as scleroderma…
A year is a long time to feel hopeless. Throughout my life, I have endured. I’ve taken my licks and kept moving in a positive direction. Even after I was diagnosed with scleroderma at the young age of 19, I remained blindly optimistic, no matter the potential outcome…
This column describes the author’s own experiences with eyedrops made from a patient’s own blood. Not everyone will have the same response to all treatments. Consult your doctor before starting or stopping a therapy. Every spring, instead of enjoying the sunny weather and the smell of freshly cut grass,…
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…
In 2018, I was asked to be a keynote speaker at an interprofessional education event (IPE) that aimed to educate graduate students in various healthcare disciplines about scleroderma. I’m a patient advocate who’s lived with the disease for more than two decades, and I pride myself on…
“Mama! Come quick!” my daughter called through sobbing tears. She’d been unwell for a few days and had developed a high fever that morning. I was already on high alert, and her cries for me were like sirens. As I was crouched down beside her as she lay on the…
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