Summer/Fall Update

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!


img_9497I 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.

Read more about Regeneron’s work & mission: click here & here
Photos from the Third Rock Ventures luncheon: click here


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!

San Diego Botanic Garden, Encinitas, CA

Facebook | Twitter

Print Friendly, PDF & Email

Leave a Reply

40 Comments on "Summer/Fall Update"

Notify of
Sort by:   newest | oldest
Hello Jasmin. I just became aware of your situation while reading about the passing of Debbie Reynolds on the CNN website. I read your story, watched a video, and then read your above blog entries here. Jasmin, I am sure that you have probably already heard this many times before, but it really breaks my heart to learn about your situation. So young and full of life, and yet struck with this awful disease. Myself, I am in my 60s now, and while I have my share of health issues, none of them are nearly as serious as yours, and… Read more »

I apologize for that one little type. There appears to be no way to edit messages after they are posted here. Anyway, as you probably already understood, “whatever lives ahead” was supposed to say “whatever lies ahead”.


You are the definition of inspiration and qualities like that are exactly what is important to people like myself. If you ever get into a bad mood just understand you help people in many more ways than other people could only dream of. Live life to the fullest girl!!!!

Robert A. Lewis

I saw you on CNN. You are so beautiful and I pray that God heals you.

Site Footer

Sliding Sidebar


  • My first blog post of the year is dedicated tohellip
    3 days ago by p0sitivity My first blog post of the year is dedicated to everyone who has supported me throughout my life with FOP. ❤️❤️ (link in bio)
  • After seven years of friendship we finally had the opportunityhellip
    7 days ago by p0sitivity After seven years of friendship, we finally had the opportunity to experience California together last month! It was such an honor to be able to share my FOP family with my bff ❤️
  • It is the places where your pain hides that needhellip
    2 weeks ago by p0sitivity “It is the places where your pain hides that need your love the most.” ✨ - @cleowade 
  • Already planning road trips together months in advance  missedhellip
    2 weeks ago by p0sitivity Already planning road trips together months in advance ‍♂️ missed my best friend ❤️
  • Spending this blizzardy day looking through pics from my triphellip
    3 weeks ago by p0sitivity Spending this blizzardy day looking through pics from my trip to CA last month - already excited for the next adventures ❤️  #twomonths  : @carolraleigh 
  • Too cute to move
    3 weeks ago by p0sitivity Too cute to move ‍♀️
  • Im extremely grateful to be surrounded by so many incrediblehellip
    3 weeks ago by p0sitivity I’m extremely grateful to be surrounded by so many incredible friends, family, and supporters. You’ve all given me hope, encouragement, strength, and courage to make it through each day. After a really difficult year with FOP, I’m so ready for new adventures and even more amazing memories. ❤❤❤  #2017 
  • Spending time back home in Wisconsin always reminds me ofhellip
    4 weeks ago by p0sitivity Spending time back home in Wisconsin always reminds me of my childhood self ❤️  #tbt 
  • When its 0F but feels like 22F anything is consideredhellip
    4 weeks ago by p0sitivity When it’s 0°F but “feels like” -22°F, anything is considered warmer ‍♀️☃️
  • Merry Christmas from my Midwest fam
    4 weeks ago by p0sitivity Merry Christmas from my Midwest fam ❤️