Hiding with Neurofibromatosis

So, I've been working at the movie theater for 3 months now.  I've made my presence known as someone who is hardworking and reliable.  My favorite job there, is working in the cafe' as a barista...I get to make cool drinks and desserts...And I take a lot of pride in the products I send out to people.

I've become known as the best barista at the theater...And even have guests order something, just because...I AM the one working.  Even having one guest tell me that his Iced Coffee with Caramel...was like having an "orgasm in his mouth"...

-Jaw Dropped-

I am having a lot of fun, but I still struggle with being 'out there' - in front of people.

It's a constant struggle.

Sometimes I feel like a hypocrite - Claiming to THRIVE with NF...While inside, I am still trying to figure out how to deal with the constant battles I have in regards to WHAT I THINK is happening when someone sees me.

I'm under these bright lights, so I know that I can't hide my bumps.  I KNOW they can be seen...So, then I have to find ways to make up, for how I come across.

Being EXTRA nice....Helps.  The fast-paced flow of people makes it so people don't really have much time to stare and ask questions...I literally can help 400-600 people a night...

But I am realizing that I am one VERY insecure person.

It doesn't matter to me when someone says "who cares what people think."

I always have cared.  And I always will.  And I guess what REALLY matters, when it comes down to it...Is if I CHOOSE to allow what people THINK of me, affect how I feel/think of myself....And if I let those people stop me from going out into the world and THRIVING.

I know that even 'perfect' people deal with how they feel about themselves...Look at all the people who get cosmetic surgery...Even tho, they REALLY don't need it...

Losing 120 pounds has surprisingly done little to help me feel better - emotionally.  I thought I would be magically transformed...Shedding the old me...But that's not what has happened.

My bumps are here.  I am who I am.  I have to learn how to embrace this....Even when it seems impossible.

I am always working on myself.  Always STRIVING to THRIVE!

THRIVE ON!!

MY Review On A Book Review

Today - I wanted to address a book review that someone left about "Thriving with NF".  This review caught me off guard for a few different reasons....First, and most obviously, because it basically trashes me.
I have gotten my share of hate mail, but this went on a personal attack level, that made me feel that either this person is just so angry at life, that anything positive just pisses her off.  Or that maybe she just feels the need to personally attack people trying to make a difference.

Secondly, it seems like this person failed to realize that this was just a glance into my life....And how NF affected ME...My book wasn't written for educational purposes at all.

You can read the review directly by clicking HERE



(Quoted from www.goodreads.com)
"As someone with neurofibromatosis I can say with some degree of certainty that this book is pathetic. The author claims to be "thriving" with NF. In my opinion it is a pathetic plea for sympathy. I have the condition too. The author was either too lazy, too selfish or just too pathetically stupid to take the time to research her condition. Even after passing this gene on to her children she took very little time to become informed about the condition. She neglected to learn or mention that the gene for NF is a dominate gene and that she sentenced half of her children to a life of uncertainty. No mention was made of the way it can affect a persons life. No attempt was made to educate the general public on NF.
If you want to actually learn about NF I suggest you go to the website CTF.org. You will actually learn something there.

She seemed to revel in the fact that NF was a condition that qualified her child for a free trip to Disneyland. 

The book is only as good as the author. In this case pathetically stupid."

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Let me address the fact that I don't ask for ANY sympathy.  I simply told my story, in hopes that it would make people feel less alone in the world of NF.  Growing up, for me, NF was a curse word.  It was what my brother had...and it was what tore my family apart.

This reader - didn't seem to understand that as I grew up....My symptoms were ignored.  I saw MANY doctors throughout my life that NEVER ONCE recognized that I had NF.  In fact I gave birth to 5 babies before ANY doctor mentioned NF!

"Lazy, selfish and Stupid"....?  Call it what you want.

AFTER MY diagnosis and finding out that 3 of my 6 children had NF.....I TOOK EVERY SINGLE MOMENT I COULD TO BECOME INFORMED ABOUT THE CONDITION!

My book....WAS NOT an education tool about NF....Instead, it was a look into a life where NF snuck its way around....Affecting me in ways that went undetected, until I became an adult.

"No mention was made of the way it can affect a person's life".....?  Excuse me?  The ENTIRE book was about how if affected someone's life!   For MANY....NF isn't diagnosed at birth...or at 2, 3 4 yrs old.  This was a BIOGRAPHY!

To the person who left the review,

I am sorry you felt the need to personally slam ME for living a THRIVING life.  I am doing everything I can do, to live a positive and fulfilling life....and also give my children the opportunity to do the same.  

Yes....I LOVE the fact that our family got to go on a trip to Disney....Not BECAUSE of NF, but because it gave our family the opportunity to make memories together, that didn't include Drs, or MRI's.

I take full responsibility for bringing children into this world that have a medical condition.  I am teaching them to be strong- positive people who understand what NF is....Since I was never given that by my own parents.

I agree...If people reading my book want to know more about NF, that they research it through other means.  AGAIN-My book was never intended to be an educational tool.

I hope you find a way to be happy in your life...BUT- don't BASH people who are already doing it!

THRIVE ON!

Happy Halloween?

I always look forward to this time of year.  The changing of seasons brings me to a place where I feel good.  Hopeful even.

Halloween has always been a favorite of mine...Knocking on door after door....And being given FREE candy?  Who wouldn't like this?!

As a kid, my older brothers were responsible for making sure I I didn't get lost on Halloween night... And we'd stay out for HOURS.  Our pillow cases stuffed full of candy, by the time we returned home...Where we would then dump our stash all over the living room floor and play the trading game.

M&M's for Snickers bars....Tootsie rolls for Milk Ways....

We didn't worry about strangers....And in our childhood world, life was pretty safe.  It's not that there weren't bad people, who did bad things...Because everyone knew those people were out there...But in our minds, we were untouchable.

I have become fairly invested in the story of Jessica Ridgeway.  The 10 year old girl who was snatched while she walked to school.  She was murdered....Then dismembered and tossed away like garbage.  Jessica's story hit our community hard....and continues to.

She could have been ANYONE'S child.

This senseless act has made such an impact on the community that this Halloween was different than any other I have ever experienced.

I KNEW that we were going to the do "traditional" door-to-door thing...To me....Life will always have bad in it.  It's not like I walk around completely ignorant.  But I refuse to allow all that bad, stop me from living life.

Last night, my kids and I walked our neighborhood and I felt so sad as I looked around at the empty streets, and darkened doorsteps.

The handful of houses that DID have their lights on, acted surprised when my children excitedly ran up and knocked on their doors!  So surprised, that MOST gave out handfuls of candy. (which of course, my kids accepted with no problem)

Is it that people don't want to move on?  No disrespect meant at all....But LIFE has to CONTINUE!  If it doesn't....What a waste!  I refuse to live my life in fear that something tragic will happen....I refuse to teach my kids to be scared of going outside.

We can teach our children (and ourselves) to be cautious and aware...WithOUT instilling fear!

So...We will (as long as it remains legal) to Trick-or-treat.  We will continue to LIVE.

And of course...We will continue to THRIVE!

Happy Fall!

 Brooklyn as "Eeyore"

 Bailey as "The scary candy hand-er-outter"

 Rachel as a "Vampire Princess"

Watch Out Bella!

 Riker as "Ninja Warrior"

 No surprise here...Riley as "Death"

The Gang...Braden as "Cowboy Kruger"