Monthly Archives: May 2016

23 Years

This list highlights 23 things (lessons, realizations, self reminders, etc.) I’ve learned in 23 years in honor of my birthday on May 25th! I’ve seen other bloggers make posts similar to this and thought it’d be a unique way to acknowledge a birthday.

1. Be honest with yourself and with others. Share your story.

2. People will stare, but it’s usually out of curiosity or concern. Smile at them even if they don’t always smile back.

3. Life’s simplest moments are often the most beautiful: waking up early just to see the sunrise, listening to children playing outside, or watching an animal sleeping peacefully.

4. Not everyone is going to have the same opinions, beliefs, viewpoints, perspectives, music preferences, and interests as you, but that can still make for a beautiful friendship.

5. Allow yourself to be sad and have really bad days. Don’t put any expectations on yourself.

6. Traveling as independently as possible will help you grow as an individual. Do as much as you can while you can.

7. Comparing yourself to other people will only bring you unhappiness and other negative feelings. Acknowledging where you’re at in your life while also appreciating different lifestyles will help you enjoy yours more.

8. “Happiness can be found, even in the darkest of times, if one only remembers to turn on the light.”¹ There’s always something to be thankful for — stay mindful of those things when you’re hurting.

9. Being fully present is so important, especially when you’re around people you care about. Enjoy moments, remember little details of conversations, get to know people better. Don’t let technology dictate your life.

10. There will always be at least one person in the world who has been in your exact position. You’re never truly alone in how you’re feeling.

11. Indulge in more hobbies that make you happy.

12. Family, blood related or not, is irreplaceable. Keep them close.Screen Shot 2016-05-23 at 5.55.55 PM

13. You don’t have to pretend to like the same things or trends that people around you seem to like. (I tried so hard to fit in and be like everyone else growing up that I never really figured out who I was and what I liked until my later teenage years.)

14. Regarding friendships (or anything, really) — quality is greater than quantity.

15. Kittens and puppies have healing powers and make the world a better place.

16. Documenting each day with words and photos makes me happy; I love being able to look back on my life and appreciate how much or how little has changed. (If you’re this way, too, check out the Day One app!)

17. The event you’re looking forward to however many days away will eventually happen. Don’t get too caught up in wishing it was any sooner because you’ll miss out on your present.

18. Take time to hand-write letters to the people who matter most to you, especially those who have positively influenced you or changed your life in some way. (My favorite lesson learned in high school Civics.)

19. It’s not always possible to have someone physically there for support when you’re sick or not doing well, but it’s in these moments you’ll find the most inner strength and courage.

20. Your attitude and how you handle certain situations can make a difference in your life. A positive mindset and open mind go a long way.

21. Your dreams won’t come true until you find the courage to begin working towards them. Start somewhere.

22. Your body and/or limitations don’t define you.

23. Every single thing you’ve gone through has made you into the person you are today. Trust that you’re right where you need to be.

¹ quote by Albus Dumbledore / J. K. Rowling

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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 good in every situation. Sometimes, though, unexpected flare-ups happen that force me a few steps back. I’m currently terrified, but I’m trying to surrender. I’ve accepted that I don’t have control over anything that’s happening in my body. I’m not giving up, I’m just letting go.

Here’s a timeline of events over the past three weeks:

April 26-29 – new jaw and elbow flare-ups + started a 3-day dose of prednisone
May 4 – spoke with my FOP specialist, Dr. Kaplan, after I noticed more pain in my jaw; he suggested I begin an additional 14-day dose of prednisone with a taper
May 5 – scheduled an appointment with my PCP and started the tapered prednisone
May 6-13 – elbow kept locking at a 90° angle and then unlocking randomly throughout this week (I contacted Dr. K who said it’s common to have symptoms like this with an elbow flare-up)
May 14 – noticeable loss of jaw mobility
May 17 – more loss of mobility (currently able to open 1 cm)
May 18 – last day of prednisone

There have thankfully been a few better days mixed in with all of the above, but the pain seems to be unrelenting. Most of my time has been spent on the couch with an ice pack comforting my jaw. I’ve lost significant mobility in just two weeks and am in the process of grieving this loss, something that fellow individuals with FOP know all too well.

I’m already learning how to adapt to the sudden progression of my jaw. I’m trying to avoid (or be cautious with) crunchy and chewy foods, and I’ll soon be adjusting my diet to include more smoothies and protein shakes. It takes me a lot longer to finish a meal now, but I’m appreciating being able to eat even more than I did before my jaw locked.

The scariest thing about dealing with an FOP flare-up is the not-knowing-when-it’ll-end part. Adapting to less mobility comes naturally to me, but staying patient for the flare-up to run its course is very exhausting and makes me anxious. I’m working on surrendering because I want to make every effort to continue living to the best of my ability in spite of my disease. I’m fully aware that I can’t do anything to change my current situation, so I’d rather give my pain and fears to God than waste my energy being angry.

If you’re unsure about what this type of surrendering means or want to understand the importance of it, I recommend reading this blog post from aBodyofHope.

“While my body may act as a prison, forcing the white flag of my systems, my spirit goes of its own fruition. The more I relinquish control, the more grace is endowed.”


Jasmin and her Maine Coon cat, Prancer | February 2016

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