Thursday, August 28, 2014

Get Whipped 4 NF

The challenge was born on August 23, 2014

After seeing the success of the Ice Bucket Challenge for ALS...I KNEW that it was possible for SOMETHING to be done for Neurofibromatosis.  The NF community was begging to be heard and desperately in need of the kind of attention that was being given for ALS...Something I knew very little about...That is....Until people across the country began dumping buckets of ice water on their heads.

It's a phenomenon....Something simple, fun, fairly harmless....That took off!!  I watched in amazement when my sons karate school 'took on' the challenge, standing on ladders and filling buckets-- So simple!

I understand that the ice water dumped on you, is supposed to simulate what it is like for those living with ALS...and what their muscles and nerves go through, as the disease progresses....

But I couldn't come up with anything that would help someone understand what it is like for someone living with NF....Aside from the GREAT ideas floating around like using sharpie marker and coloring on your get people to know what it's like to be stared at....To be different....

Now whip cream really has nothing to do with NF....Except, it is bringing people together!  The laughter and smiles I have seen, as this 'challenge' grows, is AWESOME....And if all this challenge does, is bring a few happy moments into peoples lives...Then I would say that is a successful challenge!

It's simple....If you haven't been 'nominated' ....Then START!  Simply video yourself - saying who/how NF affects your life....OR who talked to you about NF...Then SPREAD THE FUN!!!  SMASH--SMEAR--RUB--SQUIRT whipped topping all over your face!

Don't tell me that it doesn't look like fun......

Reggie Bibbs and Lou Congelio

 Meg Leaf

Tracy Grgeorash-Brennan
Manitoba Neurofibromatosis Support Group

Lyndon Demers
Manitoba Neurofibromatosis Support Group


My Mommy

Bailey Boo

My daughter Rachel

My daughter Riley


Monday, August 18, 2014

Robin Williams

I wanted the dust to settle a bit before I talked about how I felt when I heard of Robin Williams death....Suicide.  By Hanging.

I was at a loss for words.

How could a man, with so much success do something like that...?  What about his wife...?  His children...? His Fans..?

I know depression.  I grew up with a mother that was so far in the pit of darkness...Who not only almost took her life...But she almost took mine as well.

I live with fear - guilt - pain

I can't even start to imagine how far these feelings would have to take me, for me to even consider ending my life....I'd like to think that there are enough people around me, that would save me from those demons....

So I have to ask....Where was the help for Robin?  He was a great actor....So is THAT how he hid it...?

I also just learned today...That Robin Williams played a part in a show called L.A. Doctors, of a man with Neurfibromatosis.  What are the odds in THAT?

Farewell Robin Williams....I pray that the Heavens are filled with the kind of laughter you left here on Earth!

The Home Stretch

The contest for the Atkins All-Star ends today....It's silly, I found myself refreshing the vote page over and over....Just HOPING that this would be a slam dunk.  That I would have thousands of people voting and I would sail across the finish line--Trophy in hand....

My husband is competing in a contest too.

He....RIGHT NOW is a half a world away, taking part in THE WORLD CHAMPIONSHIP of PUBLIC SPEAKING....

And...From him I have learned a very valuable lesson. (I listen honey...Even when you think I don't)

Is it THE "TROPHY" that matters?  Or is it the message that is being delivered?

My story has many UPS and DOWNS.  It has kinks and bumps(literally) And I am far FAR from perfect.  But this "voting process"...and the messages and comments I have received from the people voting for me has been so eye opening.

So what if I don't win the ULTIMATE GRAND PRIZE.....!?  Sure donating to CTF would be AWESOME....But I know that I put myself out there...Did the very best I could...And I have shown people that taking back control is possible...EVEN when the odds are stacked against you.

This journey has shown me that my story has touched people....And IF I don't win this contest....I am NOT DONE making my mark on this world!


And Vote! 

Thursday, August 14, 2014

More About This "Contest"

Have you ever wanted something so badly that you would do almost anything to get it?

2 1/2 years ago, I was desperate.

My life then was about just surviving day to day.  Weekly chemotherapy treatments for my oldest daughter had me spinning.  Wondering what the next MRI scan would tell us.  While - at the same time, trying to keep some sense of normalcy for the craziness at home.


Comfort food made Bailey and I feel better.  Plus it was EASY to just go through the drive-thru on the way home from the hospital....And not-to-mention, it was "our thing"....A kind of celebration, for making it through another blast of chemo.  As long as Bailey was feeling good...I figured, why not feel good together...?

But - It was one comment made by Bailey that would go on to change everything....

The chemo bag hung over us, like a looming, dark cloud.....

We were both scarfing down the room service Chili-Cheese Fries that were delivered and watching cartoons...When Bailey looked over at me and said....

"Mommy....When I die....I want you with me."

Good grief.  I choked on my mouthful of fries....Almost unable to breathe or move.

How does someone respond to that...?  At THAT moment....I realized that I was facing TWO death sentences in that hospital room.

What was I doing to myself...?  To Bailey?

The plate of fries, that was resting on my ballooned stomach was mocking me.

I doubt that Bailey had any intention of believing I would die before her....Or the cause of that death being from obesity...She was just making a simple statement of wanting her mommy by her side, every step of the way....

But it was THAT MOMENT. THAT DAY.  That I woke up!

That next Sunday happen to be a WEIGHT LOSS CHALLENGE that our church began... I stepped on the scale....

Fast Forward to today....

Low-Carb/Atkins has changed my life....And brought me 117 pounds lighter!  Waking up - meant I TOOK CONTROL. I TOOK ACTION.  The 'something' I wanted so badly began to happen....It transformed me!

My excuses...Became completely worthless.  

I took on what it truly means to THRIVE....I feel it now....More than I ever have before.

Readers....I am asking a favor....

Atkins has this wonderful contest that I entered....Which means, if I win....My story will be spotlighted - for millions to see!!  I get excited just thinking about it!

What if....Someone - who faced all odds.....Who had EVERY excuse in the book.....Someone who is living with a life-long, progressive disorder SWEPT this contest!?  For ME...It's much more about winning prizes....But a CHANCE to show the world that NO MATTER what a person faces, ANYTHING is possible!

That's where YOU come in....

Please click this link (HERE) PAGE 10 (it changes)
You will NOT be spammed - or asked to sign up for anything.

If I win...I promise to do Neurofibromatosis....And all those who are dealing with this disorder proud!

Please share...and vote daily (Until August 18th)

Thank you SO much!

Monday, August 11, 2014

Readers....I NEED Your Help!

Maybe some of you are tired of hearing about my weight loss journey....But it has seriously been a HUGE part of my life over the last 2 1/2 years.  

Losing weight has re-focused me.  It gave me CONTROL over something.  It has put me back on the path of having the THRIVING attitude I needed!

Saying that.....I entered a contest.  I NEVER --EVER enter THESE kinds of contests.....Mostly because it puts me in the spotlight ....And I really don't feel comfortable there.  My tumors aside...I'm a pretty quiet--keep-to-myself type of person....Crowds and attention aren't MY thing...BUT....I WANT THIS!

I have been doing low-carb (Atkins specifically), joined an AWESOME Kickboxing class....And kicked things up at the local gym.....This has literally made me HALF the woman I used to be!  Shedding over 120 pounds...And making me healthier than I have ever been!

I've changed my life.....And this is where YOUR HELP can do something AMAZING......

If you CLICK HERE You will be taken to a website where I submitted a short version of my journey....There are hundreds of others who have also participated in this contest.....So I need all the help I can get!!!  I am on PAGE EIGHT Right now :)

All you have to do is click the above link...And VOTE for my story....THAT'S it!!!  I promise you will not be spammed...Or asked to join any list....Just click and VOTE!!

Thank You SOOOO MUCH to those who have continued to support me!!  This wouldn't be possible without you!!

Friday, August 8, 2014

Summer Is Winding Down

I feel like I have been running all Summer...And now, Summer is almost over.  Where did it go!?  The days slipped by so fast....I wish I could reel them back in, and take advantage of the steady-slowness....

We are starting the school year off to a VERY good start!  Bailey had her 6 month MRI and the results were GREAT....So great that our Neurologist told us that he didn't want to see us back for a YEAR!

That's a BIG DEAL..From where we were 2 years ago, with our weekly chemo visits and every-3-month-scans.

We start back physical therapy in September...To help gain strength in Bailey's back....But her scoliosis, kyphosis and degenerative disk disease continue to cause a lot of pain...

At our last pain clinic appnt...I asked about possibly using medical marijuana instead of the crazy amount of narcotics and nerve medications, and we were shot down quickly...I definitely didn't feel like we were talking to a doctor who "got it"....She used the excuse that Bailey was too overweight to begin that kind of treatment....

I was confused....thinking that Bailey takes 5--sometimes 6 different kinds of pain medications, and how THAT could be better then something NATURAL....That has been proven to be beneficial to people living with Neurofibromatosis..... in Colorado....having access to "legal pot"....I'm not sure how far I would go to get it....I can't help but still believe that I'd be doing something "wrong" in trying to use it....I wouldn't want to go against our doctors wishes....But THEY aren't Bailey.  They don't live with what she is living with.

Part of THRIVING is having OUR OWN voice....And fighting for what WE FEEL is best.....And we have learned that not ALL doctors know what is best for us...Even when they believe they do.