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FD Warrior in the making

 

Originally, this site was created to tell the story of my life with the chronic illness that I was diagnosed with at 12 years old.

So, two days ago, I opened up Microsoft Word and started to explain that in the middle of my 6th grade school year  – –  in January 2007 to be exact — I was diagnosed with a disease called Fibrous Dysplasia (FD).  It was found in the right side of my face and upper skull. I went on to explain that less than two months later (March 2007), I had my first facial reconstructive surgery.

   A CT image of my skull and the surgery in 2007

I was 12. I typed out the details of my surgery – they cut me from ear to ear, pulled my face down, shaved back the FD, and then took a piece of my left rib and built me a new eye socket.

I added a definition of the disease: “Fibrous dysplasia is an uncommon bone disorder in which scar-like (fibrous) tissue develops in place of normal bone. This can weaken the affected bone and cause it to deform or fracture.” –Mayo Clinic

That is as far as I could get in my life story.  It’s as far as I usually get before I draw a blank on the specifics of the diagnosis, the surgery, and the recovery. 

It’s been ten years, and when I talk about that time what I remember is the relentless bullying that took over my school year. I remember how small people made me feel, I became embarrassed in my own skin.

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6 months after my surgery

BUT WHY?

 

If you know me today, you know that I am one of the biggest advocates for not letting this awful disease control your life or how you feel about yourself. So why would I let people control me in such a way? Why would I let myself begin to feel so ashamed?

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In a few awareness gear items

 

Let me make this very clear, if I could go back in time and change how I felt, I would not. The people that bullied me like they did taught me some very important lessons, most of which we won’t discuss now.

The most important lesson I learned then was that it doesn’t matter what anyone thinks of you. You just have to care about yourself. And once people see you taking care of yourself first, they will follow, beginning to treat you as you deserve to be treated.

One of the “problems” with Fibrous Dysplasia is that it’s not a visible disease.  It’s rare and it’s often subtle in the exterior signs of the condition.  In short – people around me don’t know I’m sick.  They don’t know I’m in pain.  They don’t know what FD is and they can’t empathize with my hidden condition.

There are people who have FD and other “invisible diseases”  who don’t want others to know that they are sick, and I can relate to that.   Because I know FD, I’ll address only it.

What I want people to know who have FD is that, yes you are sick and that is never going to change. And there are days that you won’t be able to keep up with those around you, but that is okay. Learn to embrace this, all it is is an obstacle designed to make you stronger than you ever imagined was possible. It’s like the saying goes, “those who mind, don’t matter, and those who matter don’t mind.”

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A few of my people… They matter and they don’t mind.

 

If someone is being harsh toward you about FD, take their negativity and make something great with it. Become an advocate not only for yourself, but for others battling the same insecurities that you are.

To date I have had three facial reconstructive surgeries and two bone graphs. I receive negative comments about FD and my life everyday. I get asked why my husband stays with me, when he could find someone that he doesn’t have to help take care of. I won’t lie to you, I have my days that the negativity gets to me, but the further I get in my accomplishments the more I can let the rude comments roll off my back.

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My husband and our son

 

Today, I spend my time running a nonprofit organization that I founded called FD Warriors. FD Warriors helps those affected by FD pay medical bills. I send out monthly newsletters and I run my own website (www.fibrousdysplasiawarriors.com). I am a part of a support group that consist of almost 2,000 members that either have FD or who love someone living with FD.  They are from all over the world.

What I am doing with FD is my dream, I am helping others and to me that is making a difference.

This disease is how I am going to change the world.

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The awareness ribbon designed by Lauren Foster

To the People Who Bullied Me Because of my Chronic Illness, Thank You.

This article has also been published on TheMighty.com

 

Growing up, I had severe migraines. We didn’t know why; we just assumed it was nothing, and I went on with life. We all started to notice my right eye was lower then my left. Knowing this was an incredibly sensitive subject for me. My family thought it was simply a lazy eye.

In January 2007, that all changed. A doctor did a biopsy of the bone just above my right eye. The results came back to be fibrous dysplasia, a rare bone disorder that eats away healthy bone and replaces it with fibrous tissue. In March 2007, I had my first facial reconstructive surgery. For this surgery, they cut me from ear to ear, pulled my face down and shaved back the fibrous dysplasia. They also took a piece of my rib and built me a brand new eye socket.

We hoped this would be a great fix, and I could go back to life as if nothing had happened. That’s when I lost my first set of “friends.”

In order for me to go back to school, I had to compromise by going to the nurses’ office and taking short naps throughout the day to make sure that I wasn’t overworking myself. Even though I hated this, I did it. Anything to be back at school with my friends, right?

Soon, I began hearing hurtful things like how I faked it all, that I was just being a baby, that there obviously wasn’t anything wrong with me and that I didn’t deserve to take short naps and just wanted attention. And these were my “friends” saying this.

Thank you to my sixth-grade “friends” who taught me my first important lesson in life: That some people just aren’t good enough for my love.

Flash-forward to high school, where the bullying only got worse. It didn’t take long for other students to notice my slightly lowered eye and the small bald spot from my surgery when I was in sixth grade. Being tall, tan and blonde, I was the perfect target for being called Barbie. But I want to thank the girls who called me a f”***ed up Barbie,” because you gave me confidence and made me proud to look like the way I am.

By the end of freshman year, it wasn’t just girls bullying me — it was guys, too. They called me “Scarface” and said I was scary. Thank you to those boys who made me proud to show off my scars. Thank you for making it easier to explain why I was “Scarface.”

When I had my second reconstructive surgery, I was an adult who had to go grocery shopping and had bills to pay. My grandmother forced me to get into a wheelchair so I didn’t have to walk around Walmart. To the greeter at Walmart who laughed at me for having to be pushed around in a wheelchair: Thank you. You — and my grandmother — helped me accept that it’s OK not to be able to do it all. It’s OK that I just had major surgery and couldn’t function the same as I used to. Thank you for helping me understand myself and my limitations.

When I had my third reconstructive surgery, I was a new mother and a new(ish) wife, and I had to get groceries. Thank you to those who glared at me for having to use the motorized wheelchair (while holding my 1-month-old) to grocery shop. You helped me realize that even though I have limitations, they’re nothing to be ashamed of. I was embarrassed to use the motorized wheelchair at the beginning of my grocery trip, but by the end of it, I had my head held high. Thank you for helping me get to that point.

The burden of having a chronic illness is hard, not just on the patient, but also on the family and friends of the patients. The one good thing that comes out of having such a rare disease is connecting with other people who have it, and finding out who will always be there for you and who never was.

So to all the bullies I had growing up, although you didn’t make it easy for me to accept that I have fibrous dysplasia, I truly thank you for helping me find myself. Thank you for teaching me to be proud of my scars. Thank you for giving me the confidence to say I earned my scars, and I am proud to show them off and tell you how I got them.

Thank you for making fun of me. Thank you for calling me names. Thank you for molding me into the confident person I am today.

And yes, I do forgive you.

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You are in charge of your own happiness

As most of you know, my story was recently published on an awesome website called TheMighty.com. The article was about no longer letting the bullies have control over me. It was also about being strong enough to forgive them for the emotional distress and blows to my confidence that they put me through. Ironically, the very FIRST comment that I received below the posted article was someone BULLYING me!

The reader’s comment read: “Load of *crap*. Most people are NOT bettered by being bullied/tease. Most people in these situation lose their self esteem and are weakened. Being empowered by bad situations is the exception not the rule. I wish people would just say what they’re really feeling than just throwing out cliches.”

I read the comment, shocked.  I was compelled to respond:“Had this been interpreted how I intended, you would have seen that I was embarrassed in the beginning (the Walmart trip, for example), but in the end I was proud. It took me years to get to the point that I am today. I was diagnosed at the age of 12 and did not start speaking out until the age of 20. Yes, being forced to endure situations like that have made me feel empowered. I am no longer ashamed to look and feel the way that I do. Dealing with the bulling and teasing is what made me who I am today. That is exactly how I feel, not a cliché at all.”

The comment got me to thinking that yes, most people do not feel empowered when they are put through bad situations, BUT this does not mean that over time they cannot grow to feel empowered! Why should the outcome of bullying automatically be the loss of self esteem and feeling weakened? Why does being empowered by the bullying have to be a cliché?

The way that the world views situations like this is backwards. Kids – and adults –  need to stop letting the world get them down. Believe me, I understand that ignoring the cruel comments and nay sayers is easier said than done, and there are days that everyone wants to go crawl in bed and sleep for the next 2 days, but one thing that I have to keep reminding myself is, “The same boiling water that softens the potato hardens the egg. It’s about what you’re made of, not the circumstances you are placed in.”

Life isn’t always going to be amazing, you’re going to have to work. Hard. But stop letting that discourage you. Prove the world that you can do it.

You are a warrior, never forget that.

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Striving to Love Your Imperfect Self

Have you ever been embarrassed of how you look? Of the width of your hips? Of how an outfit looks on you, rather how you think an outfit looks on you?

I know that I have.

But…why?

According to psychcentral.com, 80 percent of women in the USA are dissatisfied with their appearance. What?! To make matters worse, the site also says that more than 10 million are suffering from an eating disorder. Double WHAT?!

Media has uncovered a way to twist society into wanting women unhealthily thin, starting from a young age; little girls learn that Barbie is the way to look. Beautiful blonde straight hair, blue eyes, tan complexion and perfect skin, with that “bikini ready” body.

As a child who grew up with eczema, brown eyes and curly hair, I seemed to be the opposite of what is considered attractive according to the Barbie standards.

Going through high school looking at different magazines, I would notice the absence of muffin tops, stretch marks on hips and thighs, and nearly every woman in the magazine wearing make up.

Now, as a young adult I am faced with new ideals, such as Calvin Klein’s new “plus size” model who definitely has less fat than me. Again, I see the absence of stretch marks, muffin tops, and cellulite. There are constantly commercials on the radio or on TV wanting to sell you something -anything from work out equipment, dietary supplements, to surgery- to help you rid of all of ‘unwanted’ flaws.

I am 5 foot 7 inches tall, a good 145 pounds with stretch marks all over my body. I have said multiple times that I am not ashamed of how I look and that I am damn proud of my stretch marks covering my stomach.

But, when it came time for bathing suit shopping this year, my self image became warped. I was looking through catalogs or online stores, and that all I saw were flawless images of women my height, but way skinnier, rocking their bikinis. Suddenly my pride went away.

I became so self conscious. I started wondering about going to the lake with my husband and all anyone seeing of me, are those stretch marks and wide hips from the pregnancy with our son. Questions swarming to my mind like, what if there are women there with bodies in better condition than mine? What if someone says something to me? What if my husband and son are embarrassed to be seen with me?

Good lord, what the hell is wrong with society – with me- that we would be embarrassed of the marks on our body that we earned, fought for, lived for?

Let’s make a change, together. Here and now let’s strive for pride. Let’s learn to be proud of how we look and teach our daughters, granddaughters, and future generations that they are perfect, just the way they are.

Work hard on reminding yourself everyday that beauty is in all the imperfections.

All my scars, unmanaged curly hair, dark brown eyes and stretch marks are is proof that I have lived and am living a full life.

I wasn’t lying when I said that I have pride in my stretch marks. Regardless of the current society standards, what I get to think of when I see those marks is my little boy running and jumping into my lap to give me a big kiss before he leaves for the day with my mom, what I see when I look at my flawed skin is all the battles that I’ve had to overcome.

I may not be considered model material, but I love my imperfect self and I am excited to say that I have earned by body and I can’t wait to see what flaws come to my body next.

And I hope you are too.

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Fibrous Dysplasia and My Relationship

When do you really find that person that can turn your world upside down? How do you know if it’s real? According to http://brandongaille.com, 25% of women say that they marry their first love… So, how do you know when you are apart of that lucky percentage?

 

Thankfully, I didn’t have to ask any of these questions. I just knew.

 

January 14, 2009 we officially began our journey of boyfriend and girlfriend. I was 14 years old, we were in 8th grade and I still remember it like it was yesterday. Before we had even begun talking, I knew that he was who I would spend my life with.

 

What I didn’t know at the time was how hard it was going to be to keep our love alive. We had many ups and downs, and we hurt each other many times. There were even moments when I thought that we were both going to give up. But you know what? We didn’t. We both knew we had something special, even at such a young age.

 

In 8th grade, Josh became my protector. He was my distraction, he made me laugh and love life more then I ever thought that I could. He learned who I was inside and out, he knew what it took to make me smile when I felt like falling apart. When I told him about my chronic illness, he didn’t run away like I was afraid that he would. He asked me about it and we moved forward. At 14 he became the most important person in my life, he became my reason for carrying on.

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Growing older and going through high school only meant more heart break for us, we broke up often and each time said that was the end. Even after every break up we would have, we would text every day. Even if he wasn’t my boyfriend, he remained by best friend, that is what kept bringing us together. We ended up with three magic words that would draw us back to each other… Very, very much? To us the words meant there was still love, hope, and partnership between us. The words meant forever.

After high school Josh enlisted in the Army, and was stationed at Fort Carson in Colorado. I had to stay at home in Tennessee because I was a full time college student, a lot of people thought that our separation would be the end, that we would grow apart because we were so far away from each other.

We knew that we could make it though, because we had had a trial separation between 10th and 11th grade when I moved to Virginia to live with my dad. We still would text everyday and our love stayed strong. We survived until I moved back home and we were reunited.

While Josh was in Colorado, we Facetimed every chance we got, text everyday and reminded each other how much we meant to one another as often as possible. We knew that we could make it and we did.

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Facetime date
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Snapchat

We even got very, very much tattooed on us so that when times got hard, we would never forget.

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This was of course before Josh’s body became covered in meaningful tattoos
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One of the many texts Josh sent me

Flashing forward to Josh coming home, our love was tested many times. Less then 6 months after he was home, I was told that I needed to have my 2nd facial reconstructive surgery. I was terrified because although Josh knew that I was a very sick person, he never had to experience just how serious my illness was first hand. I was worried every single day that it would be too much for him.

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Right before I went into surgery

 

 

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After I was moved into a regular room

 

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Trying to make me smile

Soon I got to go home and we thought that was the end of our challenges for a little while. Not even one month later challenge #2 arose and we found out that I needed to have iron infusions twice a week for five weeks… we thought that afterwards we would go back to normal.

Then we found out that we were pregnant.

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Being that Fibrous Dysplasia is a disease based off hormones we weren’t quiet sure how the pregnancy would affect my body. Thankfully we made it through and on June 29, 2015 I got to fall in love with how amazing of a father Josh was.

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Shortly after giving birth I had my 3rd facial reconstructive surgery. Just like before I let my insecurities take over, two life threatening surgeries and a baby all in less than 2 years… That was almost too much for me to handle, how was I supposed to ask Josh to handle it too? Just like before, Josh rose to the occasion and took care of me like only a husband would.

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Josh held my hand through everything. He was my hero.

After we came home from my 3rd surgery, something inside me changed. I wasn’t the same wife or friend that I was before. I didn’t let go of my fears after I healed, I held on. I was asked all the time why my husband was staying with me after everything and I honestly didn’t know. Worst of all, the one who questioned his motives and his faithfulness most was me – – even though I knew best of all that he’d long ago committed to our partnership regardless of what befell us.. What could be so great about me that he would stick around, knowing that he would have to be taking care of me the rest of his life?

I began to put up my guard, expecting him to leave everyday. I focused hard on raising awareness for FD and taking care of our son.

I was so sure that he didn’t love me anymore, even thought he showed me every single day in everything that he did.

I began to give up on the man that had been there for me for everything.

And I wasn’t even aware of what I was doing.

Thank goodness that Josh said something. If he hadn’t of said anything, I have no doubt that we would have filed for divorce before 2017.

After Josh brought it up, I got to thinking about everything we had been through, about all the love that we have between us. I started looking back through our pictures, back through our memories, through the letters he had sent while he was in basic, and I realized that Josh needed his wife back.

Josh and I are both compromising and growing together, and we will continue to get stronger everyday as we fight my disease and everything that comes with it, together.

I refuse to give up on something so pure, something so magical.

Josh was my first love. He helped me get through some of the hardest moments of my life. I hope that we never end, that we continue to fight for our marriage and friendship.

So thank you FD, for showing me someone that truly loves me. Thank you for giving us tests to prove our love.

Lastly, I want to thank Josh for not letting my FD consume me, thank you for reminding me who I am, thank you for remaining mine.

 

 

Bless me?

12316542_531337410360137_5800897118504437096_n.jpgToday I was at work and I looked down and a gentleman immediately gasped “EW What happened to your head?!”

They were just taken aback at the fact that I have a scar going across my head.

After I explained what Fibrous Dysplasia was they immediately said “oh, bless your heart!” With a look of pity on their face.

My reaction when I was little and I got the bless your heart was just to smile and nod, now though I’m thinking.. Bless MY heart?! I have what is essentially a bone eating disorder that is trying to break me down every single day. I have survived THREE facial reconstructive surgeries in less then TEN years.

Me? I’m awesome.

Yea, I may have an awkward bald spot where the hair won’t grow back and maybe my right eye is lower than my left. But I can say I’ve defeated more in my young life then most people in older years couldn’t even imagine having to go through.

Bless me?

Pshh, I know I’m a fighter and a survivor.

Bless you.