Voices Across America

My Patient Story

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Carolyn

State: North Carolina
Congressional District: NC03

Diseases

Chronic Pain, Genetic Disease, Immune Disease, Mental Health, Migraine, Skin Disease

Issues and Challenges

Carolyn has encountered: Access to Expert Providers, Copay Issues, Geography, Out of Pocket Costs

My Story

So, all my life my father was my rock. He had anger issues, but I assumed that was everyone's father. When we lived in Massachusetts he had strokes (that is what the doctors called it) and it made his health sensitive, but he never let it slow him down. He worked 5 jobs, raised us children, took care of our mother when she got sick, and kept up with his friends and family, birthdays anniversaries, you name it, he knew it. So when he started to get sick, we thought it was temporary.

I believe it was May 2008 when he was diagnosed with MS, and it was scary. I saw my father decline rapidly, I got upset because I thought he gave up, he quit his jobs, would stop moving, and refused to sleep properly. Unfortunately, I didn't get to learn everything I could back then. On March 28, 2013, at 10:30pm my father passed away from complications due to MS, which I would later find out he was actually fighting harder than I could ever imagine. In July 2020 I was diagnosed with MS. I learned the anger, the depression, the sleeplessness, the fatigue, the days of sleeping, the inability to move, the inability to stop moving, and so much more, were not him, but his disease. I have a new understanding of what my father went through. The fear of falling in the shower, but the loss of dignity with using a shower chair, counting your medications, not being able to remember things you did yesterday, and no longer just being a joke, but actually not being able to remember.

My Motivation and Inspiration

Making sure to balance life, it's such a heavy load, but I do it everyday for my dad, because his wasn't caught in time, he didn't have a chance to walk with me down the aisle or meet his granddaughter. I do it because I don't want my daughter and husband to be sitting in an ICU in a few years trying to decide whether to take me off of life support. I want to live a life for my father with my family, to share his memory with my daughter so she knows who he is.

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