I am…

I am rare. I am rare, and I wouldn’t change a thing.

I live with one of the most debilitating diseases known to medicine. I am literally growing a second skeleton and turning into a living statue. I have Fibrodysplasia Ossificans Progressiva or FOP for you weaklings who can’t pronounce it (I’m with you because it’s a mouthful). And yet here I am, living my best life.

Are there things I wish I could change? Absolutely, and maybe (hopefully) one day, there will be a treatment that allows some things to change. But don’t mix that up, I wouldn’t trade my life. I was given this mountain to show others that it can indeed [and will] be moved.

Is my life hard? Yes. Am I constantly in a sh*t ton of pain? Hell yes. All. The. Time. But, this is me. I’m not going to mold to your stereotypes. I’m going to fight my way through life and show you that I am more than my disability. I’m not going to sit back and let you walk all over me or tell me what I’m going to do or how I’m going to do it– try me, I dare you. FOP will never define me. I will fight it with every second of every day. I’m living in a world that wasn’t built for me, but here I am thriving.

Without FOP, I wouldn’t have met the amazing people & families that deal with this beast of a disease. I wouldn’t get the chance to film with Barcroft Media to educate the world about FOP (stay turned for the release date!!!). I wouldn’t have met the most amazing team of doctors fighting to free me from my own body. I wouldn’t have my service dogs or met their amazing puppy raisers & getting connected with Canine Companions for Independence. I also got some pretty cool opportunities because of my disease like a Make-A-Wish trip to the Bahama’s or meeting Kelly Clarkson.

I am rare, but I am more- more than the disease, more than the stereotypes, and more than your opinion of me.

I am sassy. I am loving. I am a fighter. I am optimistic. I am silly. I am picky (very picky). I am caring.

And most importantly… I am more like you than you [probably] think.

Different Life, Different Goals

If I had a normal body, I dream that I would be a runner. It would be my release. The burn would help me escape from my thoughts, but the routine would also help me sort them. I dream that I’d play softball on an adult Sunday team, with no stress, just the fun of hanging out with friends, burning a few extra calories, but also consume them in beer & junk food. But, that’s a life I only get to live in my dreams.

My goals are different than yours, as is my reality. Or let me rephrase my goals have to be different than yours. No matter how hard I strive, my body can’t do the things yours can.

It’s definitely something I [still] struggle with daily. I hate that I can’t push my body has far as you can. I hate that I have to work that much harder to accomplish simple everyday tasks. But I have to remind myself that it’s okay and I’m doing the best I possibly can.

Due to my chronic illness, I can’t workout or walk the recommended 10,000 steps a day or get in 30 workout minutes in a day. Heck, most days it’s a struggle to stand 12 hours a day. I have to remind myself that the goals that my smart watch recommends are for the able-bodied population; a population that doesn’t include me. I have to adjust those goals to fit something that I can accomplish daily; even if it is a third of the recommended goal- that’s okay, because that is pushing my body to its limits. My limits are different than yours & so is my body.

It’s okay because it’s the absolute best I can do. It’s better for me to adapt than to push myself too far. I have to remind myself that if I did somehow accomplish those goals every day, it wouldn’t be healthy for me and my body would rebel. And that rebel would send me in a downward spiral; a spiral I try my hardest to avoid.

I can’t run or play a contact sport or reach ‘normal people’ goals. It’s something that I work every day to adapt to. I haveto listen to my body. I haveto set goals that I can reach, and I have to crush them- because dammit it makes me feel good.

But, I have to remind myself that somedays (most days), chronic pain is going to win, and that’s okay too. Some days you win, others you lose, but as long as you’re doing the best you can, that is all that matters.

Not only am I adapting my goals, I’m adapting my mindset. I’m learning that it’s okay to have different goals. It’s okay, because it’s my personal best. I’m doing the best I can, and I have to accept that; and day by day, I’m learning to be okay with that.

5 Things I Want You Know As I Battle Chronic Illness

  1. This isn’t the life I chose & it’s a battle every day.

I didn’t get a choice; this life chose me. Someday it seems impossible to fight the invisible demon, but I’ll fight it till the end of time. I was always taught that I could do anything I set my mind to, so it’s never (and I do mean never) accorded to me to give up– and it never will.

  1. I’m not always going to be positive, but I can promise I’m always searching for the positive. 

Sometimes it’s hard to be positive when life is throwing you a million curve balls. I’ve ran out hands to catch all the balls, but I’ve learned to improvise. Many situations I find myself in are inevitably negative, but I learned from an early age that there is always a positive, somewhere, somehow. So while, at times, it seems I’m looking at something half-empty, I can promise you that I am trying my hardest to find the half-full

  1. My future is uncertain, and that scares me.

 Being a planner, the uncertainty scares me. I don’t even know what tomorrow brings, let alone what my five-year plan looks like. I can tell you what my future kids name are, but I don’t know if I’ll ever get the chance to be a mom (I’ll find a way, that I can promise you). Since my condition is progressive, I can’t tell you what tomorrow brings or how I’ll feel, and the uncertainty alone is enough to bury me. I’m trying to live the life I’ve always dreamed out, but it’s an uphill battle everyday.  

  1. I have to choose my battles- it’s the only way to survive.

I’ve tried being the people pleaser– it doesn’t work. Fighting any disease is scary, fighting a rare disease all on your own? That’s worse than anything you can imagine. I’ve learned that in order to get the best quality of life, I have to listen to what my body is telling me, even if that means upsetting someone, and sometimes that’s yourself. I’ve always had to remind myself, if someone is  meant to be in your life, they’ll understand that it took every ounce of strength you had to cancel plans. Some battles take every ounce of energy that you had for the next 7 days, and half of those aren’t worth the pain.

  1. I’m trying my absolute best.

Somedays it doesn’t seem like it, I know, but trust me, I am. I will never show you just how much this life takes out of me– it would scare even my parents away. But, I am trying, to not only be the best person possible, but also happy & healthy- most days I only get to pick one of those choices.

Living Life with a Rare Disease

As many of you know (and many of you don’t), I live with a rare genetic disorder that causes my body to actively grow a second skeleton – fun right? I’m literally a human statute & it’s basically the coolest hobby ever.

At age five I was diagnosed with FOP or Fibrodysplasia Ossificans Progressiva, if you want to get fancy. It’s a genetic condition that affects 1 in 2 million people where muscle, ligaments & tissue turn to bone.

I’ll be the first to tell you, I got lucky. I might have got a genetic condition created by the devil, but I got to live a normal childhood; one filled with love, laugher, adventure, and a lot  of bumps & bruises. But my body dropped a bomb on me one September day. I went to the doctor for the second day in a row (every kids dream right?), but that doctor saved me and my family from a lot of pain. I saw the only  doctor in the area that has seen, heard, or even knew about the disease that was about to take over my body. He quickly took my socks off & left the room-even at five, I knew he knew something that would forever change my life. He saved me from.gabing a survey which would have caused more pain, hardship, and many hours in countless doctors offices. He diagnosed me & saved me all the testing that would further harm my body.

I got lucky, because I am surrounded by people that love and support me with everything they have. I’m lucky because even though I have this awful disease, I have the coolest little big toes — a marker for FOP.

The worst part of the disease has nothing to do with the awful pain or the bone incasing my body. The worst part is the stares I get going about my daily life. The general public is so discouraging about anything or anyone that looks different. I don’t mind answering questions and educating the people that are genuinely curious, but the people that automatically assume that I don’t belong or that I’m not enough? That’s what makes this life hard. The looks alone are enough to make you feel like a third class citizen, so let’s not start with the comments they throw my way.

Outside of the disease, I’m still a twenty-something that’s all about fitting in. I love all things girly. But my disease took one very important thing from me; the ability to do my own hair. This might not seem like a big deal to some, but to me, I’ll tell you it’s the biggest thing the disease took from me (just ask my mom). If I had the choice, it would be the first thing I took back from this awful disease, which says a lot considering my jaw & hip are both locked as well. I would much rather gain the movement of my shoulders back, over the ability to walk or eat normally.

This disease took a lot from me, but one thing it can, and will never, take from me, is my attitude. Each day is faced with many (many) challenges, but with my support system, anything is possible. I love my family & friends that make every single day possible. Although, without my doctors & the copious amounts of medicine, I can honestly say I would have a much different outlook on life.

I’m beyond thankful for the outpouring love & support from all my family, friends, & doctors, because without them, my life just wouldn’t be as good.

I recently found a quote that I’m making my new motto to live by:

“You aren’t a burden, you have a burden, which by definition is too heavy to carry on your own”