YaY, A Blog Award!

I LOVE hearing back from people who read my blog.  It helps me know that I'm not writing to the empty, darkness of space.
Thank you Kelly for giving me and Bailey this thoughtful blog award!  When I told Bailey that she received another blog award, she lit up and smiled! (the first smile I have seen for a while)

So, in order for me to accept this award, I have to do list 7 random things about me, that you may not know...I will do my best....But I have to say that I was VERY impressed with Kelly's 7 random things...Well Done!

 7 RANDOM FACTS  ABOUT KRISTI 

Numero Uno

I still have my collection of Garbage Pail Kids collector cards..  I was OBSESSED with these things, when I was a kid, and have MOST of the series and they are in good condition.  When I look at these cards, I wonder why I liked them so much...But anyone who TRULY knows me, can probably tell you a few reasons why. :)~

TWO

I LOVE the new twizzlers that are sweet and sour.  I am addicted to anything sweet and sour, and THESE ARE YUMMY!!!!!!

THREE

Ive almost died a few times!  Seriously!  I drowned when I was about 5 and was saved by my cousin, who is a few years old than me.

FOUR

I love scary movies!  I am also a HUGE Stephan King fan, and could watch his movies all the time!  This LOVE, kinda drives my husband crazy....since he is a more sci-fi kind of guy.

FIVE

I am deathly afraid of speaking in public...but LOVE to talk to people about Neurofibromatosis!  I recently gave a key note to the Toronto NF group, and I was amazed at how much I loved speaking about NF!

SIX

I can GUT, Scale and cook my own fish.  I also LOVE to camp.  The really roughin' it type of camping...No motor home for me!  I love to get dirty

SEVEN

I have met many movie stars, including Michael Landon, Judith Light, Punky Brewster, the entire cast of the tv show CHiPs, Peter Scolori, Kim Fields and many many others!

Again...THANK YOU to Kelly, for this blog award!  You are awesome...and I am proud to know you!

The "No-Rules" Rules for Neurofibromatosis

When I went to Toronto, I had the privilege to meet Patricia Birch.  She is a research scientist at the University of British Columbia, in Vancouver.

She talked about the controversial topics, that no one really wants to hear.  The "no-rules" rules that Neurofibromatosis can, and oftentimes does take.

I know for me and my family, we have broken all the rules that  NF was supposed to have.  There is NO DOCTOR, no matter how much training they have, that can predict the course that Neurofibromatosis will take.

From things like Drs. not scanning for optic gliomas, after the age of 8...because "supposedly" these tumors don't present themselves after a child is 8.  My son is 13 years old, and had "clear" MRI's until his last one a few months ago, that not only showed a brand new optic glioma, but also plexiform tumors along his spine.

I have had to push for yearly MRI's and fight for insurance to approve them, because of the doctors feeling that it is unnecessary.  I am glad that I have pushed back, because without the MRI's we would not know, about the silent tumors that are very much a part of my children's brains, not only with my 13 yr old son, but also with my 15 yr old daughter, who is now receiving chemotherapy for tumors that had no obvious symptoms.

Who will fight for your children, if you don't?

I know that it's not easy to stand up to your doctor.  I know that every time I go into the doctors office, I will face a wall, that is not easy to climb.  The doctor is the one with all this education and training...who I am to question them?

But what I have learned, is that doctors do not know everything.  We need to go to them, and respectfully inform them about our concerns.  Make them hear us.  Don't take no for an answer, if what you are dealing with gets pushed aside.  YOU ARE WORTH MORE, than to just be dismissed.

I get the craziest looks from doctors, when I bring up concerns that I notice with my NF1 children.  At our 6 month dental cleaning, I had all SIX kids in dental chairs, and I asked the dentist if she knew of the connection between Neurofibromatosis and dental issues.

Her eyes squinted and she had this look of, "YOU ARE NUTS LADY!"  I went on to explain how I had participated in an NF study proved that people with NF, have a higher rate of decay...and a change in the boney structures of their jaws.

Now I am sure, that if one wanted, they could blame EVERYTHING wrong with their lives on Neurofibromatosis....but there ARE studies that prove that EVERY cell in the body is affected by NF, meaning NF can disrupt the growth of any part of the body. 

The point of this blog post is not to scare you into believing that every ache, every growth, every cavity is because of NF....But instead to inform you to just be aware of your body...of your child's body....and if something isn't right, get your doctor to thoroughly check it out,and send you to the proper place to get it treated.

Don't buy into a set of rules, because life itself, doesn't have rules.

And, several of the lesser known manifestations CAN be treated, before they become problematic.  No one can predict who will develop what, but an awareness has the potential to help people understand to stand up and be heard, when something isn't right!  

and of course
THRIVE ON!

E.A.S.Y. Way to Thrive (part 4)

E.A.S.Y.

(Y)

YIELD

Last but not least Y....For YIELD.  Yielding with NF has nothing to do with traffic rules.  Yielding DOES NOT mean, allowing others to pass you by....But I am talking about yielding  to your STRENGTH!

Yield to the reality that YOU ARE BEAUTIFUL

Regardless of cafe au laits, bumps, plexiforms--Whether they are hidden under your clothes, or displayed to the world in all their glory.  

YIELD to the possibility that you can be whoever you want to be!  Your children can be whoever they want to be, regardless of Neurofibromatosis!

I know I come off real motivational, and I know that it annoys A LOT of people, but know this...I would much rather be annoyingly motivational and positive, than to live my life angry, depressed and afraid.

My hubby is a motivational speaker....and I have spent YEARS blocking out his positive attitude platitudes.  I focused on everything that was wrong in my life.  I felt that since there was nothing I could do to stop NF from happening...why bother trying to be happy it?

It wasn't until I YIELDED to the fact that not only was I hurting myself by building a wall around my NF with my own fear and ignorance, I was hurting my children along the way.  I DESERVE BETTER!  THEY DESERVE BETTER!  YOU DESERVE BETTER!

Thriving with NF isn't always E.A.S.Y. but once you take new actions...positive actions, you will be amazed at how your attitude will transform!

Educate yourself

Take Action and watch your Attitude change

Share positively and lovingly with others

Yield to your new found THRIVING life...believing you are good enough to have it!

And most importantly...

THRIVE ON!

The E.A.S.Y. way to THRIVE (part 3)

E.A.S.Y.

(S)

SHARING

Education and Attitude are great...but what are they, unless you share your knowledge and attitude with the world?  At least share with your friends and family!

When faced with ignorance, or judgement, do not turn away.  Share.  Share who you are and what you live with everyday.  Share lovingly, with a child that points in your direction.  Share respectfully with doctors, who need to understand more about you and your life.  Share openly with each other, so we know we are not alone.

We all know 1 in 3000 births are affected by Neurofibromatosis, and yet NF is barely recognized by the general public or the mainstream media. How many of you watched Oprah Winfrey call NF the Elephant Man’s disease? You might not like this - but its not just Oprah’s fault she doesn’t understand NF - its OURS. If we want the world to recognize us, raise money to fund research to help us, to understand and accept us - we have to SHARE ourselves with them.

Once we educate ourselves on NF we can take the Action necessary to educate others. To help our families understand us more. To open the eyes of doctors who don’t specialize in NF to treat our symptoms seriously, and get us the treatment we need - even if they didn’t know treatment existed before we walked into their office. 

How many of you would consider sharing with the media? Writing to your local paper or TV station to offer them information about NF? Not everyone wants to take it that far - but would you be willing to start with your friends, your co-workers? Maybe your church? At the very least, start with each other. 

After all, MY NF is different than YOUR NF. Building a network of NF friends who understand what we are going through can be our most valuable defense against the temptation to isolate ourselves, and the rampant depression seen in the NF community. 

When we open up to sharing ourselves at any level, we gain strength, we spread awareness, and we let the world know we aren’t going to be pushed in the corner any longer....and most of all we THRIVE!

Who are YOU going to share yourself with today?

Thrive On!

E.A.S.Y. Way to Thrive (part 2)

E.A.S.Y.

(A)

ATTITUDE/ACTION

Yesterday, I talked about Education being the first part in changing how you look at your struggles.  Understanding and learning about what you are dealing with, helps so much in giving YOU the control and not allowing your condition to control you.

While education is important, it is nothing, without a positive attitude.  What good would knowing all about your condition do, if you have a really bad attitude about it?  How would negativity help in making you feel better?  

I grew up in a very toxic environment, where Neurofibromatosis was an awful swear word, that was never to be brought up.  My mother still carries with her, a tremendous guilt for 'giving' her children this horrible, unpredictable "curse".

I watched my mom, and how she treated her own NF and how her fear and negativity was spread around, affecting everyone in her path.  It was no secret that my mother was scared to death of NF.  She allowed that fear to control her, blinding her from the fact, that she actually had TWO children affected with NF.

For years, I wondered, what was wrong with me.  Why were my symptoms being ignored?  Why was I showing the same signs my brothers was, and no one was doing anything about it?

Attitude.  A fearful attitude will keep you from Thriving, plain and simple.  A depressed outlook, will limit the possibilities that are within reach for you.

YOUR attitude and YOUR actions are the only part of your life with Neurofibromatosis that you can control.  I know that we are brought up in a world who encourages us to blame how WE feel on anything we can find.....Blame God.  Blame the Doctors.  Blame our parents....

But when it comes down to how we REALLY feel....It's not the people around that we can truly blame.  It's the person that reside in our hearts...and the actions WE CHOOSE, or CHOOSE NOT to take.

I didn't start out 'Thriving with Neurofibromatosis'.  I made a choice, to not live in the negativity anymore.  I made the choice to break the cycle and DO SOMETHING, instead of sitting hopelessly by waiting for NF to do something to ME.

I don't sit behind a curtain of shame and fear.  I put myself in front of the world.  I share my struggles, my triumphs.  My good days, my bad days....In hopes of making a difference.  These ACTIONS changed my ATTITUDE.

When I find my attitude suffering the most, is when I choose to sit and do nothing.  Thriving or not....I still find myself there.  I just choose to not stay there.  It's when you choose to get up from that spot, and move on to the next moment in your lives, when you choose to take ACTION... you truly THRIVE.

THRIVE ON!