Monday, July 29, 2013

Run Forrest RUN!

"Run Forrest RUN!"

I WAS running.  In fact this was my 2nd attempt to run a 1/2 mile.  I was determined to beat my previous time and was on course!  I was focused.  My feet hitting the ground in a steady, pounding pace.  

My daughter was by my side, encouraging me to "keep going"....and my husband was in the car playing a Bonnie Tyler song that was about fighting for what you want.

I was half-way through my run, when I heard some people behind the fence yell and laugh at me...."Run Forrest RUN!"  And just like THAT, I was deflated.  That FAT - TORTURED 8th grade me, who I thought I had let go of was back.

My pace slowed and my body just gave up. 

I was crushed and angry!  WHY!?  Why would I AGAIN allow people on the OUTSIDE affect all the changes I have working so hard on, on my INSIDE.  The person I have been becoming has taken so much work....I have had to shut so many doors, with those demons inside that have hurt and controlled me.

It made me realize, that I still have a LONG way to go.  100 pounds GONE from my body, but, In a lot of ways, that tortured 8th grade girl still lives inside me.  Aching and longing to be healed.

When I got home, still huffing and puffing from my run...The defeat I felt was overwhelming.  One stupid comment from someone -And there I was crying, like I did everyday during my walks home from junior high.

All these changes I have been making, that were transforming my body, I realized were doing NOTHING to my insides.  I have been working so hard - I have been so focused on being an overweight woman, and I thought the outside changes, would automatically change me inside....I was wrong.  Very Wrong.

Even writing this blog post, shows me that I continue to be a work in progress.  Everyday, every hour, every minute- I am working on myself.

Forrest Gump RAN.  He RAN and RAN and broke free from his braces.  BRACES that held him back!  And once he was free....He was STRONGER and BETTER!

So....Go ahead and YELL at me.  I am learning that those mean - nasty comments, will only continue to make me stronger.


Tuesday, July 23, 2013

Love Your Enemy

I was sitting at church on Sunday listening to a message, that I've heard a hundred times. "Love your Enemy". A message I have known about since forever....But since, I truly don't have "enemies" I usually do the 'ya-I'm-listening-but-not-really-hearing-you' thing.

But...Somehow, this message hit me differently this time.  Usually when people think of who their "enemies" are....They think of people they hate.  People who have hurt them in some unforgivable way.

Sure - I have people in my life who have hurt me...But, I began to think deeper-

What about THINGS?

Things and circumstances have hurt me far more than people.

I have something in my life that has caused hurt, bitterness, resentment, anger, pain, destructiveness and true hatefulness.  So- I think it qualifies as my enemy.

Neurofibromatosis IS MY ENEMY.  And loving it, is impossible.  Or is it?

When I began this blog 4 yrs ago...I truly despised NF.  My blog back then was called "Life in the Big Shitty"....and I blogged ranted about how horrible it was to have NF....and how my life was anything but good.

Hate doesn't feel good.  I never walked away from a blog post back then, thinking.."WOW...that was great...I hope someone reads it..."   The blog back then, was an outlet for how frustrated I felt.  Now... outlets for anger are great...Everybody needs them....But if those outlets are destructive...You will only continue to spiral downwards.

And that's where I was.  ROCK BOTTOM!

The thing about rock bottom....The only way UP!

"Thriving with Neurofibromatosis" has NOT made me LOVE NF.  But it has made me accept it.  Thriving has given me a purpose...And I LOVE THAT!


Thursday, July 18, 2013

A Day in the Life of Neurofibromatosis

Yesterdays appointment almost - literally drained the life out of me.  While I feel extremely blessed to be surrounded by a team of doctors who know about Neurofibromatosis...I am - at the same time, surrounded by those same doctors, who fail to truly TRULY understand it.


Is that too much to ask?  Come up with SOME solution....Make it so I'm not walking out of EACH and EVERY appointment more frustrated, than when I walked in.  I am sure that these doctors get as frustrated as I do, but how do I explain to my kid, that nothing can be done to help her?

We spent EIGHT hours at the hospital yesterday.  Bailey was poked and prodded.  Xrays, blood draws, orders for MORE medication....MORE physical therapy--A change in this ....A change in that.  But no solutions....No "fix".  ANOTHER band aide.

Bailey's Kyphosis is....In the Drs. words "pretty severe". That is, for a 17 year old girl.

In almost EVERY article I found about Kyphosis, it was about the elderly.  Even of our doctors, claimed this to be predominantly an "old person's" condition.   In his words..."Her X-rays look like that of a 70-80 year old."

Bailey's "hunch-back", hasn't really bothered her.  She's a pretty laid back kind of kid.  She has dealt with the massive - overwhelming amount of doctors and appointments wonderfully.  She says she no longer feels the "pokes" during blood draws, and pretty much tunes most of the medical drama out.  

For the most part, this has been good for her....But, soon she will be 18....I am trying to teach her to take some control over her own health care...And she doesn't want any part of it. "It's too much mommy." she tells me.

I hear ya sweetheart.  It IS too much.  Too much for ANY person to have to deal with.   

We were seen yesterday by a team of doctors, very interested in Bailey.  This excited, and overwhelmed me.  

With Bailey's Neurofibromatosis type one....she also has Acoustic Neuromas (A Neurofibromatosis type 2 type tumor)  Having both NF1 and NF2 has been called "Incompatible with Life", by some doctors.  "A one in a billion chance".  Lucky Us, eh?

While this "issue" fascinates our team of doctors, all they seem interested in, is studying Bailey.  I know that's not TRUE....They Do care....But it sometimes feels that way. 

No fix.  No cure.  No answers of WHY!

Bailey's scoliosis, is common for someone with NF, and isn't that bad.  But the scoliosis, along with Kyphosis, has made Bailey....What was it the Physical Therapist said...?  Oh yeah..."A FUN PATIENT."

Fun?  Not for Bailey.  She lives with constant, and I mean CONSTANT back pain.  She's been on several different pain medications, all of which knock her out, or make her sick.  Our most recent prescription for pain medication was TOPOMAX, which I personally took for almost a year, and re-named the stuff "DOPOMAX", because it caused me to literally act like a zombie.  (Now...I like zombies, but not enough to become one...Or have my kid become one)

When we met with Bailey's primary doctor, he quickly took Topomax OFF Bailey's list of new prescriptions.  This medication may work for some....But according to THIS Dr., it was not a good fit, as Bailey is already taking a number of other things, and didn't want to take the risk of complicated interactions.

In general, we have doctors who listen AND hear us....And this is a good thing.  We didn't necessarily leave the appointment with bad news, or a drain of hope.  We left knowing that the doctors are TRYING to help.  Without some magic wand ... NF is going to have its ups and downs.

If we have to do more tests, more therapy, more MRI's....Than so be it.   Advances are being made all the time...And who knows....Maybe one day....All the tests, scans and blood Bailey has been a part of, will one day be a part of some kind of treatment for NF? 


Friday, July 12, 2013

Update on Weightloss

I'm not a stupid woman.  I knew I was FAT.  I knew I was unhealthy and headed in the direction of diabetes and heart disease....But frankly, I didn't care.  People knew I had a lot going on, and understood.  I had my "BUILT-IN" excuse for drive-thru lunches and dinners from a can.

I still had my "THRIVING" attitude...So what difference did it make that I was 100 pounds overweight?

Well...I'll tell you...

Living a "THRIVING LIFE" doesn't just stop at me having a good attitude about living with an incredible frustrating disorder.  It means living beyond NF, and setting an example in ALL aspects of my life.

What good was I doing anyone...Being so overweight, talking a BIG talk about being happy and content, when I really wasn't....?

My "built-in excuses".....You know what I did with those?  I transformed them into challenges!

Yeah....I'm "too busy" with medical appnts -MRI's, blood draws, chemotherapy and dealing with side affects- to fit in ANY exercise...I have Soooo much going on, that I couldn't possibly follow a meal plan and STICK to it!


If you want something BAD enough...People find a way to get it.

So...I changed everything about the brain-washed - pathetic way I was living my life.  Got OFF my butt and DID SOMETHING!

I didn't start HUGE, with some magic pill.  I didn't starve myself to death.  I didn't even go out and join a gym (I did eventually tho)

It ALL started by changing my MIND.  Changing ALL those built-in excuses I had been relying on my ENTIRE LIFE.  It started by shutting out the part of me, that was saying I wasn't worth it.

After all, that's how Thriving with NF was born...And it worked out pretty good!

So...How am I REALLY doing it?  How have I lost 89 pounds?  What's the "magic solution?"

Seriously...I am low-carbing and getting my butt moving!  Yeah, NF may slow me down, but it will never stop me.  NF has affected my entire life....Controlled me and lied to me for TOO LONG!

Friends Of Jaclyn

In 2011, just after Bailey was diagnosed with her 2nd brain tumor, that required immediate chemotherapy, I was told about this really great website.  I clicked on the site and was drawn into a story about a selfless little girl named Jaclyn.

Jaclyn's wish for other kids to experience a relationship with a new kind of family fascinated me.  While battling malignant brain cancer, Jaclyn was adopted by a college lacrosse team, becoming an honorary member!
A lift in spirits for a little girl, fighting such monstrous war.

Tears fell as I continued to read the story of courage and hope that emanated from Jaclyn...And while I was hesitant to sign our family up, I knew in my heart that my daughter's spirits were low and she desperately needed something that I could not give her.

When I was writing our own story, to introduce our family, it felt as if I was writing about some other child, as Bailey's diagnosis was still fairly new, and I hadn't had the chance to digest all that we were facing.

It wasn't long before we were contacted by Friends of Jaclyn and I was able to learn more about what exactly they do.

Since my daughter wasn't "passionate" about any particular sport...One was chosen for us.  A women's Lacrosse team in Denver.  I had no idea what to expect, but we were soon contacted by the team, and a first meeting was set up!

Our entire family (all EIGHT of us) was invited to the teams first home game!

Bailey was a little overwhelmed by the welcome she got, but it was amazing!  Posters, balloons, and high-fives....Not to mention a buffet-style "Welcome Breakfast".  A new kind of family indeed!  

As an "honorary member" of the team, Bailey was given her own locker, that was decorated and filled with really cool Lacrosse gear.  Bailey knew nothing about Lacrosse, but soon was invited on the field to learn all about the sport.

We weren't always able to go to the home games, due to appointments, or Bailey's low blood counts, but the team always stayed in touch with us.  I was so impressed with the genuine love that was expressed for my daughter. 

Bailey has connected with most of the team on Facebook and has truly made friends for life!

Over Christmas this year, our family was blessed by the team when they adopted us and bought gifts.  I never expected this outcome and the relationships that would form when I first contacted FOJ, and I am eternally grateful for being able to witness a transformation in the spirit of my daughter.

Thank You sweet Jaclyn, for your sweet and generous wish.  Your desire and passion to make other children happy, has changed our family forever!

Thursday, July 11, 2013

Who Takes Care of Mommy?

I just got off the phone with MY Neurologist.  Yes...I do have a Neurologist...And I have been avoiding him for almost 2 yrs.  (At least that's what the scheduler said when I made my appnt)

It doesn't feel that long...In fact, I have totally forgotten the fact that he said he needed me back in a year, for a follow up MRI.


Like an overgrown garden, filled with weeds...Life sometimes gets overwhelming.  Just the thought of going outside to start the "weeding process"....makes me feel like I am on an endless spin of a merry-go-round.


Where I don't have to think about NF, DR Appnts, headaches, tumor pain, tumor growth etc etc etc

(And this is just my kids....And Oh Yeah....I have NF too.)

My husband said to me yesterday...."My mom didn't realize you had a brain tumor."
(She's here from Washington, for a visit)

REALLY?  I've been married to Rich for 14 yrs....I've talked endlessly about NF and ALLLL the issues it has caused....Did I really never mention this?  

I rarely post updates about myself....Mostly because, I feel "fine" and my NF has stayed fairly quiet
***Knocks on Wood***

But I do in fact have a brain tumor.

I also have non-treatable Normal Pressure Hydrocephalus.

I have blogged about this, but the posts are WAY back, and have probably been forgotten about.

When my husband told me that his mom had "no idea" I had a brain tumor...It sent mixed feelings.  

1. I am GLAD that I am not one who mentions her every ailment in every conversation I have.

2.  I guess I hadn't fully explained our "situation" in a way that was understood

3.  I guess I don't "act" like a person with a brain tumor and hydrocephalus

So there it is.   Time to take care of Mommy.  
Time to be more open, more honest and get out there and pull some weeds!
After all...Even the most beautiful of gardens don't get that way on their own.


Tuesday, July 9, 2013


What does it take to be heard?  To be noticed?  

Sometimes...It takes NO VOICE at all to get people to pay attention to you....But there are also those times when you could be screaming with all the energy you have, and  people couldn't care less.

This week my 8 year old son had his belt testing  in Karate.

The week previous, his instructors told Riker exactly what he needed to work on to earn his new belt.  They were clear and direct with him, making sure he knew, that if he didn't work on those things...He would not pass his test.


So...Riker went home...


He was practicing EVERYWHERE!  

In the pool....At the splash pad...The backyard

He was determined to earn his belt, and did what it took to make that happen.

I found myself watching Riker test....Nervous.  Not that he'd fail....I just wanted his hard work to pay off.

Not only did Riker PASS his belt test...But he was recognized for how determined he was.

Sometimes, it doesn't seem worth it...To be recognized for something, but just imagine the difference we could make, if everyone had a positive determination to be heard!  

Even with NF...For how devastating it CAN be...It can be equally HOPEFUL to have voice that not only teaches....But provides a LIGHT for people to look to.

Sunday, July 7, 2013

Our KRAZY Summer

Boy...Summer is FLYING by!  I keep saying how I can't wait for it to end, and for the kids to go back to school...But, I think I am starting to regret ever saying this.

Put aside the constant complaints of being bored...Or how it's too hot inside the house.  Forget that there is never enough food in the house....Or that the pool is too far away (basically just around the corner)  The constant fighting over whose turn it is on the PS3...Or the "Her stuff is touching MY stuff"....

Ok...Wait.....This Blog post isn't going the way I thought it would.....

Truly....I am loving Summer.  The days when I don't have anywhere to go, anything to do, anyone else's kids to watch...Those days where it's all about SUMMER!

Sleeping late--Squirting each other with the hose--Being lazy

Those days when the kids aren't fighting--Or complaining
(These days are rare, but DO happen)

I know that when Summer ends, and the kids are all in school and the house is quiet....That I'll miss them.  I'll miss the chaos -- and craziness.  But really....The KRAZY in our home never ends...It just gets replaced and rearranged.

My goal for the rest of the Summer is to just enjoy it.  My kids are growing up so fast--TOO FAST, and I sometimes allow myself to get so wrapped up in all the STUFF that is going on, that I forget to stop--SLOW DOWN and look around at all the good stuff happening.

Bailey has been "OFF CHEMO" for 6 months.  This is a good thing!  It means she is considered STABLE.  Stable in the tumor world is fabulous!  She is growing into a BEAUTIFUL young woman who has a GIANT HEART!  Bailey has begun babysitting...and I think...Has found a passion for working with children!  Kids love her...and she is patient and kind (even after dealing with her 5 siblings!)  
I am so proud of her! 

Braden is growing and changing so much, that sometimes, when I hear him talking in another room...I get freaked out that some strange man has entered our home!  He'll be a Sophomore this year - which just blows my mind!  Braden is a video game addict who impresses me with how he can figure out how to complete an entire game in just a few days. 

Riley has probably changed the most.  Not just with her hair and wardrobe...But with her grown-up type attitude. (Not a bad thing)  She wants to grow up so badly...And I think she puts this pressure on herself to be something she isn't quite ready to be....Or maybe she IS ready...and it's ME that's not ready?  
She will be starting Middle School....MIDDLE SCHOOL!  I can't believe it.  She too has begun babysitting...She is excellent with kids and so badly wants some independence...For her...This means HEAR OWN MONEY!

Rachel...Still a tiny, ball of thunder and lightening.  My "Perfect Storm".  I LOVE Rachel's spirit...But WOW...It can be a lot to handle sometimes!  I don't "blame" any of Rachel's "issues" on her SPD, or NF...We just accept that Rachel is Rachel.  Beautifully and Wonderfully made. :)
She will be a 5th grader this year.  Gosh, I remember walking her into Kindergarten....Seems like yesterday. Rachel's "spunky spirit" has been amazing to watch.  She has never let her challenges get her down...Always the first to raise her hand...Always with a smile...Even went the answers are wrong.

Riker...He will be starting a NEW and in HIS words "SMART SCHOOL".  As Riker explains it...His old school doesn't keep up with how smart he is....So he is going to a school that knows just how smart he is.  Don't worry...We are keeping his ego in check....But THIS kind of confidence is important.  He IS in fact smart....And his new school will pay close attention to this...I can't wait to see him grow AND be challenged!
Riker is testing for his Red belt in Karate...Which means, he is now able to kick MY butt....As well as anyone who dares to challenge him.  (within reason)  He always remembers the "Black Belt Creed" tho...
"I will only fight, to protect MY life...Or the lives of others!"

Brooklyn--Sweet, Feisty, Artistic Brooklyn. The last of the KRAZY BUNCH!  A FIRST GRADER!  Boy do I feel OLD!  This girl is amazing.  At 5 yrs old, she can carry on a conversation, that most adults would envy.  She knows EXACTLY what she wants...AND how to get it....(Her beautiful eyes--batted a few times, is all it takes)  Brook's Kindergarten teacher labeled her as "gifted and incredibly social"....Gee...I WONDER who she takes after?

My family ... The greatest gift I have ever been given.
Now ... My goal is to live my life with my eyes wide open.