Spring/Summer Update

The past year has been filled with amazing opportunities, new experiences, challenging realizations, and unexpected setbacks. I’ve had wonderful days surrounded by friends as well as very difficult days due to FOP flare-ups. I haven’t shared much about my personal life in awhile, so I wanted to finally write about some of the things that have been going on. First off,

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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

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Hope for a Cure

My family and I used to manage a greeting cards and gifts company to raise awareness for my rare disease, Fibrodysplasia Ossificans Progressiva (FOP). My life revolved around planning my new card designs, watching my dad scan, print, and prepare the cards, and helping my mom package and label our products for the various craft fairs we attended each year.

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To My Camp Counselors

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 changed my life without me

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2015 Highlights

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 myself following so many weeks

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  • Havent been able to leave the house in three weekshellip
    3 weeks ago by p0sitivity Haven't been able to leave the house in three weeks (since the late night ER trip). The prednisone helped the pleurisy and jaw pain, but I'm now experiencing a new FOP flare-up in my upper back. This isn't exactly how I pictured this summer to go-- doing my best to…
  • In the week since my last post Ive been onhellip
    1 month ago by p0sitivity In the week since my last post I've been on three different anti-inflammatories (experienced side effects from each of them). I'm now on a high dose of prednisone, a steroid that also helps decrease inflammation, after noticing another FOP flare-up in my jaw. The flare-up is making it more tiring…
  • Needed to go to the ER last night from 9hellip
    1 month ago by p0sitivity Needed to go to the ER last night from 9 pm until 3 am // For the past few days I've been experiencing pain in the left side of my ribs and chest - it hurts to breathe fully and I've been feeling weak. I have a restricted lung capacity…
  • One month ago thankful for my best friend shayweasel hellip
    2 months ago by p0sitivity One month ago- thankful for my best friend  @shayweasel  & her Noodle ❤️ even driving to the airport and making rest stops became an adventure!
  • One of my favorite traditions is helping to sort bookshellip
    2 months ago by p0sitivity One of my favorite traditions is helping to sort books for our church's 4th of July jamboree! There's nothing like kids books to make you feel nostalgic ❤️
  • Happy Fathers Day
    2 months ago by p0sitivity Happy Father's Day
  • One year ago today Thankful for such wonderful friends andhellip
    2 months ago by p0sitivity One year ago today. Thankful for such wonderful friends and the memories that have filled our spirits every single day, in the midst of everything going on in the world. ❤️️‍ (not pictured:  @kclarkeeeee )
  • My neighbors cat is the friendliest lil beauty
    2 months ago by p0sitivity My neighbor's cat is the friendliest lil beauty
  • 3 months ago by p0sitivity
  • Week 1 in NC birthday celebrations evening walks puppy snuggleshellip
    3 months ago by p0sitivity Week 1 in NC: birthday celebrations, evening walks, puppy snuggles, lots of selfies, eating baby food with  @shayweasel  (since we both have trouble chewing), alternating between TWD and Gilmore Girls, texting each other gifs when we're in the same room, reuniting with my favorite small human, midnight snacks, heart to…

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