adapting to life with a rare disease, FOP.
“Acceptance doesn’t mean resignation; it means understanding that something is what it is and that there’s got to be a way through it.” -Michael J. Fox I’ve been dealing with multiple flare-ups of new FOP bone growth for the past two months. It’s very painful, frustrating, and exhausting. The most prominent flare-up, my left hip,…
The Mighty has daily posts dedicated to “finding strength, joy, and beauty in disability.” I’ve followed them for a while now and am always touched by the inspiring stories written with such grace, strength, and hope. For the entire month of March, they have asked their readers to write a letter to a diagnosis that…
Today’s post is going to be a little different than what I normally write about, but it’s something I felt like I needed to share in its entirety to continue healing my heart. It’s the story of my lightly-striped marmalade-colored tabby cat who lost his second battle with cancer exactly two years ago (March 2,…
World Rare Disease Day is this Saturday, February 28th, 2015! I decided to dedicate this post to raise some awareness of rare diseases as a whole. I hope you will take a few minutes to read the facts, watch the videos, and share this post with a friend! Thank you. :) In the United States,…
The past few months have been frustrating for me due to the freezing cold weather and the insane amount of snow that Connecticut has gotten over the course of a month (it’s only been a month!?). Because of FOP’s progression the past couple of years, it has become more difficult for me to remain active…