Thank You!

I am sitting here, getting ready to sign and send off the third batch of my new book Thriving with Neurofibromatosis and I just wanted to thank everyone for the wonderful support and feedback.

I am excited to share my story with the world of those living with this diagnoses and I hope it brings a little hope your way.

I am humbled by those who have responded and appreciate the continued support!

It IS possible to THRIVE and I hope my book inspires people to be more than they think they can be!

This is what people are saying

"Where do I start.... It's just fantastic. I have not been able to put in down. Kristi is an inspirational young lady, whom I would love to meet one day. I have smiled and cried and laughed whilst reading this great book. I would suggest to anyone with NF, buy this book or put it on your wish list. It's a must!!"

KIWI-AMAZON REVIEW

"First off I am not much of a reader, but I could not put this book down. As an adult with NF(neurofibromatosis) myself it is often helpful to just see how other people can overcome the challanges of having NF to prove to yourself that you can overcome the challanges of your own. Kristi shares her life growing up in the book, it will make you cry at some points, and other times it will make you smile. An excellent book for anyone that has NF or knows someone with NF."

DAN H.-AMAZON REVIEW

"This book made me laugh and cry. I loved how open and honest the writer is with her feelings. This story helps me realize that I am not the only one who struggles with the issues of NF.
The writer is inspiring and uplifting! She has a way at looking at such a horrible disorder with true spirit and faith.
I couldn't put the book down! This is a personal account with uplifting stories...The writer educates and inspires her readers to go beyond surviving!
A MUST for friends and families dealing with the diagnoses of Neurofibromatosis!" 

KIM-AMAZON REVIEW

"Amazing book. You are so inspirational and have so much fight in u!"

Jade-FB

"very good book i couldn't put it down :)"

Hayleigh-FB

"It was a great read Kristi. And I liked the upbeat approach. I felt upbeat reading it"

Joyce-FB

"It was absolutely AMAZING! My 2 year old has NF and I really hope one day Bailey writes a book just like you. You both are so amazing and her words (MRI -consult) made me cry, I hope I can teach my son the way you have thought your children."

Teah-FB

"Just finished your book! In some parts I felt as if I was reading about my self. You did and awesome job on it. Thrive on!!"

Kambi-FB

Thanks Again!

THRIVE ON!

Do YOU like Change?

A good friend of mine wrote this wonderful article about change and I wanted to share it with you.  So often, we (me included) sit paralyzed with fear by what what change could bring.  Liz shared a new perspective, that I am adopting immediately.
Thank you Liz, for allowing me to share this...I found it refreshing and beautiful.

Change –

A few Sundays ago, Doug Smith asked our congregation about change. “Who likes change?” I was one of the crazy people who raised my hand. And since then, I’ve been wondering why. Here are my reasons for embracing change.

            Change is a great catalyst for growth and I would choose to grow rather to remain stagnant or die. I believe that, like many things in life, how we perceive change is a choice.If I choose to resist change I run the risk of regretting the past life that God has granted to me and resenting the future life God has planned for me. Change is inevitable. I do not want to create conflict in an arena where inevitability will always win. What is the point in creating needless strife; when life is already full of enough strive as it is?

            I am not accepting of change for change’s sake alone. So often, after one removes the shiny plastic coating from something “new and different” one finds nothing but the “same ol’, same ol’” underneath. Change - in and of itself - can either be positive, negative, or neutrally ineffective. A twenty dollar bill in the gutter can be spent wisely, poorly or left to deteriorate. Unlike change, twenty dollars can also be tucked away for the right time and place to be spent. But, mostly, change is not something I can control. I cannot slow it down or save it up for the moment I am ready for it. It occurs in God’s time frame and sometimes in the world’s time frame; but rarely in my own. Even when I think I have a five year plan or simply a plan for next Sunday, life has a way of changing it.

            Change does not always make me happy. Happy implies cheerfulness, high-spiritedness, or even naiveté, or giddiness. No, I am not always happy with change, but I choose to be accepting, and I am slowly learning to like it. I try to accept it with as little complaint as possible. I strive to live with it without causing undue conflict. I want to accept change and enjoy the contentment that resolution allows.  It is my choice not to find my life’s meaning in the winds of change. I do not find my self-worth in the changes life does or does not grant to me. I want to be content with whatever life changes I experience because I believe that life is greater than the sum of all its experiences.

“Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will.” Romans 12:2 

It seems to me that if I am to be transformed, I must be willing to change.

"The key to change...Is to let go of fear"

Rosann Cash

Thanks again Liz...God Bless You!

Where Were You?

If you haven't already heard...25 years ago the tragic news of the Challenger Space Shuttle echoed around the globe.   Read More

I wanted to share my own story, then share a wonderful blog post my hubby put out today.

I was in 5th grade.  Mrs. Adam's wheeled a TV into our classroom, and we sat on the floor surrounding the broadcast of the launching of the Challenger Shuttle.  My thoughts were that I was just happy to be getting out of classwork...but it was a big deal, especially to the few teachers, that had a connection, with the teacher on board that shuttle.

It was exciting to see the launch, and countdown with the TV....  5-4-3-2-1 Lift off!  I remember watching, and getting excited as the cloud of smoke cleared....seeing the rocket blast off!  

Seconds later...Something went wrong.  The cheering in the classroom turned to gasps and crying.  The TV was quickly turned off and the Principal made an announcement over the loud speaker about what had happened.

Our school later that year, raised funds to help re-build the shuttle, but the sadness lasted a very long time...and for some...it will never go away.

My hubby says it well...Tragedy can strike at any time....at any place.  The fear of tragedy can stop many dreams from coming true.  The aftermath of tragedy can be even worse.

The best we can do, is to pick ourselves up and carry on....and keep dreaming.

God Bless those that were lost 25 years ago.  You will never be forgotten.

 Please read my husbands blog

*thank you a great post*

"You Look Good for 70!"

I have always been told that I have an "old soul"... but never would I imagine that my new doctor would look at my MRI and tell me he thought he was coming into the exam room to meet a 70 year old woman.

Having Neurofibromatosis, doesn't automatically qualify you with also having Hydrocephalus, but lucky me, I got diagnosed with both in 2007!

About a year ago, I wrote about my experience being diagnosed with NPH (Normal Pressure Hydrocephalus) and a brain tumor.  My fear  heightened, when I was told by my Neurologist at the time, that there was nothing that could be done for me. 

I was sent on my way, with no solutions for the pain and more fear than ever before.  I was frustrated and angry that these supposed "specialists" were offering no help...and pretty much dismissing me entirely.  What was I supposed to do?  Where was I supposed to go?

I was ready to give up and just accept that THIS was my reality.

Yesterday, I met with a new Neurologist...The move to Denver caused us ALL to find new Drs...And...Giving up just isn't in my nature, I guess.

My headaches have gone from bad to worse these last few months, and I was desperate to find someone who would listen to me and take me seriously.

Dr. Oh in Aurora did just that.  Not only did he listen to me...He HEARD me.  He told me that never in his practice has he seen a 30-something year old woman, with hydrocephalus, walking around and living a semi-normal life.

He compared my MRI to that of a 70 yr old woman.

The brain tumor I have, which has been called a Lipoma, is now being further investigated.  The likelihood  of a VP Shunt is now becoming more of a reality.

I was given a full Neurological exam and told that a team would be put together to discuss my case.  I am elated, but at the same time, scared to death.

Sometimes you have to scream, in order to be heard.  Doctors are not miracle workers, and cannot read your mind.  If you don't fight for what you believe in, you probably won't ever get what you need...or want.

I am tired of being ignored.  Tired of being told - "There's nothing that can be done."

So....I continue to fight.  Scared or not.

We Have Neurofibromatosis....