Columns

How advocacy work helps me embrace living with scleroderma

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.

How applying makeup makes me feel empowered

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…

Sweating through symptoms of scleroderma is a practiced skill

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…

How scleroderma broke my heart in more ways than one

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…

Finding a solution to my chronic dry eye disease

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,…

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…