adapting to life with a rare disease, FOP.
I feel very fortunate to have grown up less than 10 minutes away from an organization that has remained close to my heart: Paul Newman’s The Hole in the Wall Gang Camp (THITWGC) in Ashford, Connecticut. It gave me all that I needed to thrive as a young girl with a life-threatening condition. Camp subsequently…
Living in a body with FOP is like being forced to ride a completely different roller coaster every day with no time in between to catch your breath. I never know when the next drop (unexpected flare-up) might be, if I’ll stop going in loops (seemingly never-ending pain), or if it’ll be a smoother ride…
Happy New Year!! These were some of my favorite days of 2015. 1. June 13th – mini photo op with my Boston-area friends before we watched our favorite music duo, Karmin, open for Lindsey Stirling! So many laughs, photos, and inside jokes. 2. September 8th – had a good day where I felt more like…
“Some people think I am my body and treat me with prejudice or pity. Some are just curious. It took years, but I have learned to ignore the stares and just smile back. My body has taught me to respect my fellow humans — even the thin, able-bodied, beautiful ones.” -Lisa Sandin, “I Am Not…
It’s almost been two months since I traveled by myself to Southern California! I had an amazing time, but I can wholeheartedly say that it was a miracle I was able to fly. Up until the night before traveling I was still experiencing a lot of pain (refer to my last blog post here) and felt very…