The Act of Surrendering

“Have courage for the great sorrows of life and patience for the small ones; and when you have laboriously accomplished your daily task, go to sleep in peace. God is awake.” -Victor Hugo Anyone who knows me knows that I’m not one to give up. I’m determined, resilient, and optimistic. I’m able to stay positive and I look for something

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How Flare-ups Affect Me

Living in a body with FOP is like being forced to ride a completely different roller coaster every day with no time in between to catch your breath. I never know when the next drop (unexpected flare-up) might be, if I’ll stop going in loops (seemingly never-ending pain), or if it’ll be a smoother ride for a while. At the

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Health Update: Flare-ups

“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, is also the most familiar

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Winter Health Update

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 during the winter months (usually

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  • In the week since my last post Ive been onhellip
    2 weeks 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
    3 weeks 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
    4 weeks 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
    1 month 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
    1 month ago by p0sitivity Happy Father's Day
  • One year ago today Thankful for such wonderful friends andhellip
    1 month 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
  • 2 months ago by p0sitivity
  • Week 1 in NC birthday celebrations evening walks puppy snuggleshellip
    2 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…
  • Spent my 24th birthday with my best friend shayweasel alsohellip
    2 months ago by p0sitivity Spent my 24th birthday with my best friend  @shayweasel  (also my photographer)

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