adapting to life with a rare disease, FOP.
This list highlights 23 things (lessons, realizations, self reminders, etc.) I’ve learned in 23 years in honor of my birthday on May 25th! I’ve seen other bloggers make posts similar to this and thought it’d be a unique way to acknowledge a birthday. 1. Be honest with yourself and with others. Share your story. 2….
“Have courage for the great sorrows of life and patience for the small ones; and when you have laboriously accomplished your daily task, go to sleep in peace. God is awake.” -Victor Hugo Anyone who knows me knows that I’m not one to give up. I’m determined, resilient, and optimistic. I’m able to stay positive…
My family and I used to manage a greeting cards and gifts company to raise awareness for my rare disease, Fibrodysplasia Ossificans Progressiva (FOP). My life revolved around planning my new card designs, watching my dad scan, print, and prepare the cards, and helping my mom package and label our products for the various craft…
Growing up with a physical disability made me feel as though I wasn’t capable of doing anything without some type of assistance or accommodations. I couldn’t participate in various activities (events, games, sports, etc.) or reach the same milestones (driving, working, college away from home, traveling abroad, etc.). I wanted to experience that same type…
Today (February 21st) marks the one year anniversary of when I published my first blog post! Prior to this day, the most I had ever shared with family and friends was the occasional health update briefly explaining new FOP flare-ups. I’d ask for thoughts and prayers without going into much detail on how my disease…