My last blog post was in late May, about a month after a very sudden FOP flare-up began in my jaw. In just three months I went from having over one inch of jaw mobility to less than one centimeter.
This progression affected many aspects of my life — primarily my diet, but also talking at length and being able to easily brush my teeth. I’m still working on adapting to the changes and figuring things out, which is partly why this update has taken so long to write. Instead of posting a health update like I normally would after a blogging hiatus, I’ve decided to focus more on the positive experiences that have helped me cope with everything.
spring, summer, & fall 2016
The first of several flights was to San Diego, California to celebrate my 23rd birthday with some of my family! My dad and I met up with my aunt and cousin and visited all of our favorite places: the San Diego Zoo and Safari Park, La Jolla Cove, and Seaport Village. This trip was my first time away from home since my jaw flare-up, but it was so comforting to have the support of my family to help me with whatever I needed. There were a few days I wasn’t feeling well enough to go anywhere and we still were able to make the most of each day.
I took a train to Boston and then road tripped to Portland, Maine with two of my friends the following morning! We spent about seven hours at the Old Port Festival, enjoying the live music (including our favorite musical duo, Karmin) and the overall atmosphere. I’m thankful that my body still allows me to be able to walk around a city, though I had to take lots of breaks. Days like these are so important to me because they give me a little reprieve from my daily life with FOP, even if it’s just briefly.
My mom and I traveled to our home state of Wisconsin to visit my grandma, aunt, uncle, and cousin, as well as some family friends. It’s hard living so far away from our loved ones, but we definitely make the most of the time we get to spend together. We also continued our 17th annual tradition of spending the night at a bed & breakfast!
I flew to Norfolk, Virginia to meet one of my best friends, Shay, for the first time in person! I happened upon her post on The Mighty last year; she’s also a blogger and is living with multiple chronic diseases. After contacting her through Twitter we formed an immediate bond and couldn’t wait to finally spend time together! As expected, we mostly just watched our favorite television shows: The Walking Dead and Gilmore Girls. It’s so comforting to find a friend you can completely be yourself with, one who seems to understand everything.
At the end of this month I had the incredible opportunity to be filmed by CNN Health for a profile feature! It was out of my comfort zone to talk on camera, but such an amazing and life changing experience in many ways. There will be a short video and article posted online soon!!
My next solo trip was to Orlando, Florida to spend a week with another one of my best friends! We had a few things planned, including a day at Universal Studios so I could experience it for the first time. I also met up with several other friends while I was there – we hung out at Universal CityWalk for an evening and Disney World another day. I hadn’t seen any of them for a while so it was really nice to have some time to reconnect.
Later this month into early October I had three public speaking engagements in three weeks! The first was at an FOP fundraiser in Middletown, Connecticut where I read a speech and my letter to FOP. Next was a patient & caregiver advisory board in Tarrytown, New York for Regeneron, a pharmaceutical company working on administering a potential treatment for FOP! Lastly, I shared my story interview-style alongside Philip Reilly, M.D., J.D. in Boston, Massachusetts at a luncheon hosted by Third Rock Ventures. Each experience was such an honor.
My most recent trip was to San Diego again to spend a couple more weeks with my west coast family. We visited several different museums, the Zoo and Safari Park, the haunted Whaley House, and some historic parks. I also was able to meet up with my cousins for lunch – one of them lives in the Midwest and just happened to be visiting California the same time as me! The rest of my days were filled with Lost marathons, drawing & painting, and movie nights.
It took me several weeks to recover from all of these activities, but it was definitely worth it to me. My sudden jaw flare-up was a reminder that my abilities and independence, including traveling by myself, could be taken away from me at any time because of FOP. I’m determined to continue making crazy plans, taking risks, and having the types of experiences I had this year for as long as I’m able. I’ve made so many wonderful, positive memories in the past six months and look forward to even more unique adventures in the years to come!