adapting to life with a rare disease, FOP.
I originally shared a letter I wrote to my rare disease, FOP*, in March 2015 as a way to process what I was going through. (If you’d like to read it, click here.) My life has recently changed greatly due to FOP’s progression, so I decided to write a new version of this letter. Dear…
Yesterday, February 28, 2021, was Rare Disease Day! We celebrate on this day because the ‘rare’ Leap Day of February 29th only occurs once every four years. Everyone comes together on the last day of February to share their diagnosis stories, spread awareness, and show support for their incredible communities. Alone we are rare, Together…
I was devastated to learn that a major fire broke out at my favorite childhood place, The Hole in the Wall Gang Camp, the night of February 12, 2021. A row of iconic buildings were lost to the flames, places where thousands of campers like myself spent hours discovering new passions and hobbies. Though nothing…
After an amazing year (and only one other blog post), I’m slowly beginning to get back into blogging. I definitely needed to take some time off, just so I could focus on enjoying my travels! I’ll be posting some updates soon, but for now I wanted to begin this Question & Answer blog series. I’ve always enjoyed…
Dear friends and family, I know it may be difficult for you to see what I’m going through, whether it’s through my personal posts or updates when I’m not doing well. I understand if you feel overwhelmed and intimidated at times. You may have never known someone as medically complex as me before. Maybe you’re not sure what…