You Can't Wash Away the Cafe Au Lait

Several years ago, after our families diagnosis of Neurofibromatosis, we had a choice to make.  Run from it....Like my own mother did....Or LEARN from it.

One night, I was sharing in the bath-time fun with my daughter Rachel.  She had just come in from outside, and was dirty from head-to-toe!  With the bubbles over-flowing the tub, we began to scrub the dirt.

We laughed because the once clean water, became dirty.

After filling the bathtub back up with fresh water and LOTS more bubbles, Rachel noticed the brown spots all over her body.

This was the first time Rachel had asked about the spots....AND the first time I really ever had to explain them to ANYONE.

She tried to wash the spots off with a washcloth and asked why she couldn't wash them away.

In that moment, I knew I wanted to write something about NF....This blog...The book Thriving with NF....And MORE!!

I explained to Rachel, in a simple way....."Those 'spots' are called Cafe' au lait, and you can't wash them away...."

After drying Rachel off, and getting her tucked in for bed....She asked more questions about NF....So sweet -- so innocent.

The IDEA for a children's book was born that night.  I wanted something short, sweet and positive.   But mostly, easy to understand.

If you are interested in "You can't wash away the Cafe' Au Lait" please go: HERE

The link will take u to AMAZON, where u can download a copy.

Follow little Sammy, as she learns to live with Neurofibromatosis.  

Thrive On!!

Connecting NF Style

You know how when you are driving around....And you spot someone on the road driving the same kind of car you are in...?  You take that extra time to check the other car out....Maybe even smile and wave to driver...Like you know...you have some sort of connection with them....Even though you are complete strangers.  :)

Well...This kid started working at the theater I work at, and I did that..."Hey, something about him is familiar..."  I just started noticing that he and I had something in common.

It's weird.  When you meet a total stranger, who has the same condition as you.  It's a crazy feeling that is hard to explain.  It's like you are friends, before you even speak.

This kid, is 18 years old....Has Scoliosis (an obvious curvature), slightly bigger head, deep set eyes...And cafe au laits spots on his arms....Which were what prompted a conversation about Neurofibromatosis.

I feel sad for this boy...He tells me that he has no one to talk to about what he is going through.  He is the only one in his family who has NF....And his parents are in denial and refuse to take him to the doctor.

We were on break together...And he had his head on the table.  I asked him if he was okay, and he tells me that he gets really bad headaches.

"Is this normal...?" he asks.

My motherly instincts kick in and I slide my chair over to him.  I told him about my headaches...and that he needs to communicate to his parents about this.

He has never had an MRI....And he asks me what they are like....And we spend the rest of our break talking about tumors and headaches.

Part of me whats to hunt down his parents, and shake them...and MAKE them care!  I understand being scared and not wanting to deal with this.  I get the thought of wanting to shove this in the corner and and ignore it.

That's what my parents did.

I get the fear and guilt.  But fear and guilt do NOTHING but make things worse.  Especially when you are using them as excuses.

The other day this boy and I are passing each other at the time clock...He told me that he told his mom that he met a lady at work who also has NF....He went on to say that him and his mom are going to the doctor next week to talk about his headaches.

I was so happy!

He said THANK YOU to me......"For what...?" I asked.

He said...."For talking about NF and not being afraid....For helping me not be afraid...And maybe...for helping my mom not be afraid...."

This folks, is what it's all about--

THRIVING WITH NEUROFIBROMATOSIS!

You DO Matter!

"I know you!"

This voice, and these words caught me off guard. I was at work, behind the register, expecting to ring up yet another large drink, ginormous popcorn, and package of Junior Mints.

"I've read your book." I looked up. "We're friends on facebook. You've been such an encouragement to me. You are so beautiful - you remind me of my mom."

I blushed, and kind of looked around, a bit embarrassed, but also thrilled to meet someone else in our wide world of NF. She said she wanted a hug, but she was late to her movie, and quickly flashed a selfie pic with me. She headed off, and my fellow cashiers just gave me a strange look and went about their business.

After all. I'm just a nobody. At least that's how I feel most of the time, and, to a point, how I prefer things to be.

It's easy to slip by- go unnoticed and stay isolated in my own little world...I'm not a lime-light sucker....And do not THRIVE at being the center of attention.

'A Quiet Encourager', was how one woman described me, when I was a guest speaker for an NF group in Canada.

It's amazing to me, the impact just ONE person an have on another.  Good or Bad.

When this blog started 7 years ago...It began, simply, as a way for me to journal our way through a very frustrating situation.  The only intention, was for me to find a way to get through the complications with a positive attitude....If someone read a post, then great....If not, no biggie.

Blogging gave me time to sort my thoughts....Giving me an opportunity to process them....Then allowing me to put those thoughts and feelings into action.

What good would this blog be....If I wasn't living what I was writing here?

For a while, I felt as if these words...would go out into cyber space and disappear.  No one commenting on my posts...Meant, no one was reading.

I got trapped in a mindset that I didn't matter.

I was still THRIVING.  But...Well you know.

Then something would happen that would totally knock me off my guard.

A note on my windshield from a mother dealing with a new NF diagnosis, who noticed the "THRIVING WITH NEUROFIBROMATOSIS" bumper sticker....

A warm, friendly hug with parents at the Children's Hospital, who just had their child diagnosed with NF...

An e-mail from a stranger...who google's 'Neurofibromatosis' and comes across MY site, and feels encouraged...

Or...Like the other night....

Just as she was telling ME how I encouraged HER....She was totally doing the same for me.
At THAT moment....JUST when I was feeling like I didn't matter.

It's so easy to think and believe that we don't matter.  To go through life and just exist.  But ...who wants to JUST EXIST?

YOU DO MATTER.  What you say.  HOW you say it.  How you act.  It ALL matters!  And you never know who YOU can encourage....It could come from just being a nice person!

It doesn't mean you have to go write a book, or start a blog....But it does start with believing in yourself.  Believing that you are worthy and good enough...And then, spreading that around, so that everyone around you believes it too.

THRIVE ON!

When it Rains...It POURS!

I love my video blogs...And I thought about making THIS a video...But I don't feel like I would come across very well...And I am so completely frustrated that I think the written word would be much better for this type of post.

2015 was set up to be amazing.  Rich and I had plans.  Goals.  And we were, strike that, we ARE determined to make things happen.  Heck....we even bought a nice journal to track our unwavering progress.

Then.

Life hit.

Over and OVER and OVER!

In February, We got a notification that said "Thank you for renting with us.  We value you as tenants!  Starting April 1, 2015 your rent will be increased by $150."

BAM.

$150...to MOST people, is a drop in the bucket.  No big deal. But to those who live life on a relatively fixed income, scraping by month to month...It's HUGE.

Then, another blow.
A letter from the Social Security Administration stating Rachel no longer "qualifies" for disability.  That her status has "improved".  This not only threw me into a panic....It kinda ticked me off!

Neurofibromatosis does NOT IMPROVE.  Rachel HAS remained stable...As far as brain tumors and vision are concerned...But she is far from "no longer disabled".

Our situation as a family has been "stuck".  On the system and (sadly) relying on it to help us with a place to live and put food in our mouths...And now suddenly...The "system" decides that things are better...When they really aren't.

I was conflicted...embarrassed. At the same time, I'm feeling like maybe this is our chance to get OFF the system, and really push our lives out of the tangled - complicated web of medical - financial - craziness and finally stand up on our own two feet.

My mind going crazy with thoughts...The forces of nature playing a cruel joke on us.  Fate...not wanting us to succeed, or maybe INSISTING that we succeed. I'm speaking in Vancouver in October, But I should be speaking throughout the year. My next book will be out by end of Spring. Our future, while it feels like we're getting constantly punched in the face, is still under our control.

We just need to keep moving our feet. Fight back.  THRIVE.  We put our words to ACTION.  We don't give up.  We see the bigger picture....and hand our stress and our fears a KNOCKOUT blow!

THRIVE ON!

Bailey's Service Dog

Two years ago, Bailey applied for a service dog.  Fergus has been such a big part in Bailey feeling better.  Not only does Fergus detect seizures -  He helps Bailey cope with the emotional side of dealing with a progressive - and complicated disorder. 

For more information about where Fergus came from, please go to www.freedomservicedogs.org


Do you qualify for a Service Dog?  Google 'Service Dogs' and search your city for organizations that can help you apply!

To Qualify:

Be at least 12 years of age unless service dog is needed for a child with autism (see below)

Have a diagnosed physical disability, anxiety disorder such as PTSD, debilitating chronic illness, or neurological disorder affecting at least one limb

Reside in a stable home environment

Be physically and cognitively capable of participating in the process of training, up to one hour per day

Be able to independently command and handle a service dog

Be able to meet the physical, emotional, and financial needs of a service dog

Have no other dog in the home (other animals as pets are permitted)

THRIVE ON!

I met with a good friend recently.  We talked, like we always do.  She is a very spiritual woman, who is strong in her faith...And I always go away from our meetings feeling very uplifted.  She has this way about her...That always seems to encourage me.

And...Although sometimes I don't feel like it...She tells me that I also encourage her.  It's amazing the impact that SOMETHING...or SOMEONE can make...without really intending to.

When I began this blog 7 yrs ago....It's intention was to put myself out there...Tell MY story, so that somewhere...Somebody would feel less alone.  I wanted to Inspire...Uplift...And Encourage those living with Neurofibromatosis...And help them see that a THRIVING LIFE was possible!

A few years ago, I began to end my blog posts with "THRIVE ON!".....Which has been echoed back to me several times, which really makes me feel GREAT!

So GREAT, in fact that it has been the staple of how I live my life!

I want to share with you a way that YOU TOO...can show what a THRIVING LIFE looks like!  A way to LIVE PROUD...And shout to the world that YOU ARE AN OVER-COMER!  A person who doesn't let life's obstacles hold them back!!

Cancer?  Brain Tumors?  Neurofibromatosis?  THRIVE ON means that you go beyond JUST DEALING WITH IT!  You FACE IT!  YOU EMBRACE IT!  And you THRIVE with IT!

Get your T-shirt now by clicking on the shirt of your choice....Join ME as with THRIVE THROUGH LIFE!

THRIVE ON!

Holiday Craziness!

I usually go missing in action this time of year.  The craziness seems to keep me running from one thing to the next...So today, I wanted to slow things down a little and catch up.

My Holiday CRAZINESS begins in September.  While school has already started, September is filled with Birthdays!  And the Birthdays don't stop, until after we ring in a new year.

September 18th...Both Brooklyn and Riley turned another year older.  I swear, when I look back at all the parties ...It just seems to have swept by and gone WAY too fast!

Then....I turned 40.  Yeah Yeah...I even dedicated a whole blog post to how I feel about that...But, it's not as hard as I thought it would be to be 40.  I kinda like it....Now, I can act mature and feel normal doing it....Or I can be silly and be one of THOSE moms...

Early October, Braden turned 17!   SEVENTEEN!!!  I can hardly believe it!  These kids are becoming grown ups, right before my eyes!  Having THREE teenagers in my house is a daily adventure....I am so proud of all of my kids!

THEN....we had Halloween....Which seems like was celebrated the ENTIRE month of October.  I love EVERYTHING about October...Especially raking and playing in the leaves....Which became tradition the very moment I became a mommy.

And now...We're into November...Thanksgiving and another Birthday....Then December...With ANOTHER Birthday and of course Christmas...

In the meantime...We had another STABLE MRI for Braden, which sets our mind at ease a little...And we can put our focus where it should be...

That's an update from my little corner of the world...I hope that my family and friends who read this blog learn to take the Holiday Craziness one day at a time...and enjoy those moments when you can relax and reflect on the blessings that surround you.

Thrive On!

Teenage Life with Neurofibromatosis

Life is hard.  Being a teenager is awkward and filled with hormones and emotions that run wildly rampant...Often sending teens into feeling depressed, angry...even, in some cases suicidal.

When I was 14 years old, I attempted suicide.  I fumbled through my parents bathroom drawers and found a package of Nyquil Liquid Gels.  There were 6 pills left.  I was SURE this would do the job...So I desperately popped the pills out of the foil, into my hands and swallowed them all as I stared at my reflection in the mirror.  I didn't think.  I didn't care.  I was desperate.  And I just wanted my pain to stop!

"No wonder they call me names!"  "I don't blame them for hating me..."  "I hate you Kristi!"

My symptoms of Neurofibromatosis were so mild back then (relatively)....But enough that the other kids KNEW I was different.  I KNEW I was different....But since doctors told me and my parents that I DIDN'T have NF....No one knew WHY I wasn't fitting in...Or why I just couldn't be "normal"!

There were no answers back then as to why I couldn't keep up in school.  Why I wasn't understanding the material being taught....Or why my body, was "freckly" and "dirty looking".

Today...We are raising 6 children.  THREE of whom happen to be FULL-BLOWN teenagers!

Two of those teenagers also have Neurofibromatosis....And life is definitely different for them.

There are no set of rules for ANY teenager, let alone ones who face the challenges that come with having a complicated/progressive disorder like Neurofibromatosis-- But there are things that I have learned along the way, that have helped.

First, and most importantly....Let your teenager in on what is happening!  KNOWING what they have, whether it's Neurofibromatosis, or any number of life-long heath issues is the key in to helping OTHERS understand, and more likely to accept them, which will in turn, help your teen accept themselves.

It wasn't my parents fault that NF wasn't diagnosed earlier (I was 34 years old and pregnant with my 6th child, when I was 'officially' diagnosed)  Nor was it their fault that I was horribly bullied...But they did miss vital clues, that could have saved me from a lot of the physical and emotional pain I was experiencing...

When it comes to my children's health.  ALL OF THEM....Even my 7 year old, who has been diagnosed with VITILIGO -a skin condition in which there is a loss of brown color (pigment) from areas of skin, resulting in irregular white patches that feel like normal skin...KNOWS what is going on with their health.

While my now 18 year old daughter was diagnosed with a brain tumor, that required IMMEDIATE surgical action, to put in a port, for chemotherapy...There were no secrets, and no sugar coating things.  SHE KNEW every-single-action, we as parents were taking....and SHE had input, and opportunity to express how she felt about what was happening to her.

If only...I had felt safe enough to TALK to someone, when I was kicked...and spit on....When girls in my gym class poked and made fun of my birth marks, and "bumpy skin"....How different would my teachers have treated me, if they understood that I had a learning disorder...and wasn't just "LAZY and INATTENTIVE"....?

Pay attention to your teenager!  Stay involved with the school and your child's teachers!  ASK THEM QUESTIONS about how they are feeling.....

Growing and changing into young adults is difficult all by itself....But when you add all the things that come with having Neurofibromatosis (tumors, birth marks, freckling, deformities, amputations, learning challenges, emotional issues, social problems....Not to mention - a higher-than-normal amount of doctor visits....)  Things can get a little rough for your teen....And being able to be open and honest with them about what they are feeling is SO IMPORTANT....Remember- that it's not just YOU going through this...It's THEM too!

Let your teen FEEL what they FEEL.  Try not to make them feel like they should just deal with it ...without being able to get emotional.  Allow them get be Angry...Sad...Whatever....And give them ways to cope....I know there have been countless days, where my daughter Bailey has become very upset with having NF.  Life is "UNFAIR"...She HATES what her body is doing....And feels hopeless and confused....

VALIDATE YOUR CHILD!!!!  Let them know you are there for them!!  Those feelings are part of the coping process!

Joining a support group, FOR TEENS going through the same thing HELPS BIG TIME!  At first, my daughter was resistant to the idea of talking to "strangers" about what is happening...But - over time - this has been HUGE in helping her through some pretty tough stuff!

WWW.CTF.ORG has been AMAZING!  Bailey has gone to camp a few years in a row, and connected with kids her own age, that also have NF....Building those relationships has been a very important part in helping her know that she isn't the only one going through this.

Also...As a parent...YOU should have a way to process what is going on as well.  It's tough being a parent, watching your child go through a diagnosis -- It's confusing, heartbreaking and emotionally exhausting!  

You may feel GUILTY---ANGRY---CONFUSED

(I know I have felt ALL of these feelings)

YOUR FEELINGS ARE VALID TOO!!!

You, as a parent have a responsibility to guide and lead your child - and help them become the best they can be...But they can't do that, if YOU aren't the best YOU can be.

YOU...have to go through the process of accepting this, just like your child does....So learning ALL you can about whatever the diagnosis is...is extremely important!

While doing this, I know personally, that it can be overwhelming and scary...But - TRY - to keep things in perspective.  Not everything you learn about the diagnosis will necessarily happen to your child....GOOGLE is not the best way to learn...And always shows you the worst-case-scenarios of images and stories...So, getting your information from OTHER parents and families is the best way to learn...Not only ABOUT the condition...but also how to handle what is happening.

***Don't be afraid on 'what ifs'!  Ask questions!....And get involved! -  Find out if there are support groups...Or fundraising organizations for your particular diagnosis....Taking an ACTIVE ROLE will help not only YOU....It will also show your child that THEY TOO can not only accept what is happening....BUT they will also THRIVE!

THRIVE ON!!

Guest Post- Rosie Watts- Helping Paul

I love when I am contacted by people out in the community who are making a difference!  Today I am proud to share the story of a young man named Paul.

*From Rosie Watts- "Thank you so much for this opportunity Kristi. Here is the blog: I have also attached a video of Paul and some of the boys doing music at the new inclusive school :)"


Hello everyone,

I would like to thank Kristi for the fantastic opportunity to share Paul's story on her blog. I think the motivation Kristi has for helping people is fantastic, you really are very inspiring.

My name is Rosie Watts, and I have been working in Ghana with children with special needs during my summers from University. I worked for 6 weeks this year in Kumasi Children's Home, where I built a sensory room filled with specialized activities for the children with special needs. I have also been helping to renovate the school to make it inclusive for every child with special needs in the home.

One of my main current charitable projects in this home is helping a young boy, called Paul. He has a diagnosis of neurofibromatosis. Paul has been in the Children's Home for around 5 years, he was abandoned there when his face and head began to grow abnormally, mostly on his right side. Since then, his head and face have continued to grow abnormally however physically and cognitively, the rest of his development has occurred seemingly as normal. It is not known exactly how old Paul is now but the home suggest between 9 and 12 years of age. The excessive deformities of his face and head have seemed to develop gradually over time and over the past two to three years have begun to crowd and obstruct his vision to the extent that he is now operating as fully blind.

 An Image of Paul at school when I took him this summer. 

As soon as I met Paul in summer 2013, I fell in love with him and he was the individual who inspired to return to Ghana. He is the most amazing, positive young boy despite his condition. He loves cuddles and kisses and lots of attention, which the children in the home often do not get. Every morning when I arrived at the home he would come running up to calling my Ghanaian name ‘Ama, Ama’, we would greet with love and it would put a smile on both of our faces. Paul now attends school which he absolutely adores and he is really thriving in many ways.

Mine and Paul's morning greetings. The smiles say more than words could ever say. 

When I was in Ghana this year I took Paul for various medical check-ups such as CT scan and am currently using my trusty team over in Ghana to continue this, I am in the process of arranging for Paul to get a biopsy to determine whether his condition is benign or malignant. I have now received the scan results back and have sent them to multiple neurosurgeons and professionals specializing in neurofibromatosis, as well as a range of support groups. I am in the search of information to increase my knowledge of the treatment that Paul needs and also for a neurosurgeon and a team of Doctors relevant for Paul who would be willing to operate on this amazing young boy.

Furthermore, I am looking for support in fundraising for this project, if you would like to be involved in this, email me at helpingpaul@hotmail.co.uk

For more information on Paul and the other work of Helping Paul please take a look at our website –
http://rosiewatts4.wix.com/helpingpaul
Or our blog –
http://helpingpaul.blogspot.co.uk/

Thank you everyone for reading about mine and Paul's story and helping us on the journey we are to embark upon together.
I love Paul so much and miss him everyday being here in England, but this only drives even more to get Paul the medical care he needs. With the determination and love that I have, I really feel that this is achievable.

   

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.

Worry--Guilt--Anger--Sadness--Fear

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!

Why Am I Doing This?

I'm not going to name names....But a person close to my heart asked me a question the other day that got me to thinking....Actually....It got me MORE than thinking....It sort of ruffled my feathers a little bit.  Now if this person is reading this post...I mean no disrespect and I LOVE you tons...And maybe possibly, this was EXACTLY what I needed.

This person asked me "So...Why all of a sudden are you exercising and losing weight...Why the new obsession...?  I thought you looked fine the way you were."

This took me by surprise because:

1.  Nothing is "all of a sudden" about me trying to lose weight.  I have been struggling with my weight since Junior High...and have Yo-Yo'd around the scale since forever.

2.  If I were to continue on the path I WAS on....I'd either be dead....or seriously and dangerously obese.

3.  I may have "looked fine"...But I wasn't.  I was miserable.  I was tired.  I was just getting through the days and was extremely depressed.

So after the conversation with my friend....I got into my car and the song 'Girl on Fire' by Alicia Keys came on the radio....I found myself singing to it and feeling unbeatable.

All the WHY's of my journey surrounded me.

1.  My "new" Hobby--Obsession has helped me feel worthy.  I NEVER felt like I COULD feel good about myself.  The tumors/freckles/birthmarks all held me back...whispering lies like how it wouldn't matter if I lost weight...The tumors would always be there, reflecting back at me from the mirror chanting that I would ALWAYS -- NO MATER WHAT...Be ugly.

SCREW THAT!

2.  I may have "looked okay"....But seriously....Excusable Fatness?  I'm sorry....NO WAY.  I'm no fitness expert....But there is no planet in our universe that would say it was okay for my 5'1" frame to carry over 240 pounds.
DOING SOMETHING ABOUT IT-- was my ONLY OPTION.

The wall I was facing - Being that 240 pound woman was CRAZY.  And it scared the crap out of me.  But I'm doing it.  I've DONE IT!  Day-By-Day.

3.  I am in no way the most confident person in the world.  Heck I can barely carry on a conversation with someone....BUT...What I feel INSIDE...WOW.  It's a type of rush that can only be understood by people who have done it.

4.  FAT is no longer my best friend.  Seriously.  I counted on my fat for everything.  Now....It's up to my MIND..MY SPIRIT...and MY HEART...and I have to say, it's a MUCH better relationship!

5.  Once I got rid of the excuses was when my journey REALLY took off.  When results began - I knew I had to go all the way.  The only thing keeping me from being better...Was ME.

Knowing I can keep up in a kickboxing class...or Run 3 miles in a half hour pushes me forward and helps me never want to look back.

WHY am I doing this?

Because DOING THIS is BETTER than NOT DOING IT!

THRIVE ON!

Our Visit With ENT

This has been a long time coming.  Do I dare say I was excited about this visit?  (I use the term 'excited' loosely.)

Our family has a love/hate relationship with the ENT.

4 years ago...It was an ENT who would initiate the diagnosis of Neurofibromatosis in my oldest child.  First doing allergy testing...Then, treating several bouts of Strep Throat....Further investigation would discover hearing deficits...leading to an MRI, discovering 2 masses on Bailey's auditory nerves.

It was a whirlwind of memories....

Us being a family that is familiar with Neurofibromatosis...I ALMOST expected the diagnosis.  ALMOST.

With tumors being discovered on Bailey's auditory nerves, the doctors went back and forth about a diagnosis of NF1 AND NF2....Which has been termed as "IMPOSSIBLE"....And we have STILL battled with the possibility of this being what Bailey is dealing with.

I'd be lying if I said I wasn't thinking about NF being the reason Rachel and I were at this appointment.  In the back of my head I'm saying a silent prayer, that Rachel's issues weren't related to NF...But in the long run...When you HAVE NF....EVERYTHING is related.

When we meet the nurse and doctor...I find myself SO HAPPY that I didn't have to spell out NEUROFIBROMATOSIS.  In fact, everyone we came into contact with today, knew exactly what it was...And how to spell it! (Thank God for the small things - right?)

A detailed history was taken....Including the 6 positive strep tests...And endless amounts of antibiotics that were taken, that never seem to quite cure the infections.

But - it only took our doctor a few minutes of looking into Rachel's mouth to see...that WOW...her tonsils are HUGE.  And "Abnormal Looking"....The size of "Golf Balls".....

Yeah...We've been told this many times before....Only to have the doctors tell us that tonsils are not removed routinely anymore....and they give us the "let's-wait-and-see" approach.

Just a LITTLE Frustrating!

Our doctor said...."Ummm Yeah....that's not happening here....Let's get Rachel fixed up!"

Music to my ears!

Speaking of EARS....we were sent down to have a hearing test...Since Rachel has been complaining of constant "noise" and "ringing"....And that test was also "abnormal"....And our doctor tells me that it could all be connected to the tonsils/adenoids.....

Makes Sense...

I was asked about Rachel's sleep habits....and was FINALLY able to speak to someone who put this CRAZY puzzle together for me.

Rachel's sleep habits....Um....Well...

To start, Rachel has night terrors....and very VERY restless nights.  There are times that she gets out of bed...and just stands in the middle of her room, SCREAMING.  She literally tosses and turns the entire time.....

And the SNORING.....

So the Doc places this thing around Rachel's nose  (CPAP type thing)  and hooks it up to a monitor....And the we were told that she has AWAKE apnea....Which means almost 100% that Rachel has SLEEP APNEA.....(further testing will be done AFTER the tonsil/adenoid surgery)

We also had the doctor take a look at Rachel's nose....

Rachel gets VERY frequent bloody noses....USUALLY brought on by her temper tantrums.....I mean MAJOR GUSHING nosebleeds.....

I guess Rachel's veins are "ABNORMAL" too.  3 or 4 times the size of a normal 11 year old girl.

Figures.

So -- Cauterizing the vessels in Rachel's nose, will be added to the list of things to do while she is getting the tonsil surgery...YAY...One-stop-shop!

On top of ALL of this...Our lovely ENT wants Rachel to have an MRI.  She felt some "abnormal tissue" around the neck area..."Thickening" she called it....Which made me think of a family -- whose blog I follow, who also JUST visited an ENT...and is dealing with tumor-y complications....

SIGH....

ONE-STEP-AT-A-TIME

Rachel and I left feeling HAPPY...or....at least.....relieved that SOMETHING was being done!

We stopped at the vending machines and got a soda for the ride home and talked about how much Ice Cream Rachel thought she could eat.....

"A MILLION TONS", she says.....

I guess we'll see about that!   :)

STILL THRIVING!

There it is again.

Silence.

That all too familiar sound.

It's almost deafening....And fills the car and the air around us, with a thick and unbreathable cloud.  Our drives to the hospital are always tense.

We listen to the radio...Make small talk....But we know--

It's coming.

Good News?

Bad News?

Whatever it is...The wait for it is ALWAYS heart wrenching.

Every 3 months we hold our breath...And for the last 9 months, we have been able to breathe in and out, having faith that the next scans will be like the last.....STABLE.

Uncertainty brings fear...No doubt about that.  'Giving it to God' is easy....when it isn't YOUR child.  Having faith that 'everything will be okay'....Is GREAT....But in the end....I know that EVERYTHING is NOT okay.  Far from it.

Bailey is 18 now...She can speak for herself and make her own decisions about her health.  And she knows, NF will ALWAYS be there....An unwelcome stranger...that is eerily creeping in and out of our lives...

When we checked in--SHE was asked all of the questions, that I am so used to answering.  I guess it's a little hard to let go and realize that Bailey IS an adult now....

Yet...

She is STILL my baby.  Turning 18 doesn't mean I let go...It just means...That maybe I stop squeezing so hard.

Maybe.

She's a pro at these MRI's and has come today well equipped.  (Her favorite fuzzy blanket and a movie that she has seen a zillion times)  Familiarity brings her comfort on days like today.

The waiting room is ALWAYS filled with people.  Families.  Worried parents strung out- here and there.  I constantly scan the room....wondering why THEY are here.  We all have our own stories, most of which are sadder--maybe more complicated than ours...But at the same time...THEY could be looking around - thinking EXACTLY the same thing.

They've changed the waiting room, since we were here last...And I silently thank God for this.  At the same time...I miss our weekly visits to the hospital.

I don't miss watching the weekly injections of chemotherapy...or the violently ill child that would come from these visits...But...I guess I miss the fact that people payed attention to us....Our medical needs and concerns were  important and carefully analyzed.

Now?  It seems we are just another family, that has a child with a brain tumor.  A year ago...these tumors were a big deal...And now...they have remained stable--Which is GREAT...But....The tumors are still there.

I sit waiting for Bailey to come out of the MRI...

"Have they grown?"   "What's next?"  "What if....?"

Then I find myself feeling a horrible sense of guilt.  I DON'T WANT to be the family that is payed  attention to.  I WANT to walk in...and then walk OUT of the hospital without feeling worse.

I WANT to get GOOD NEWS.

Update-

Going upstairs after the MRI, is probably the toughest part of the whole visit.  The results are THERE...and now we have to wait until our doctor comes in, to give us the results.

I can almost predict what the results will be, within seconds of seeing the faces of those entering our room...But the last time we were here (3 months ago) I was thrown off, by a completely different doctor, who I had never met before...

Molly comes in and slides into the wheeled chair and I look at her face.

Nothing.

She begins to ask Bailey questions about how she has been feeling....

"Oh God." I think *quietly*

I find myself talking over Bailey...trying to remind her to tell the Dr. all of the times she has come to me with headaches....dizziness....nausea etc....How the last 3 months have been WORSE than all of the other months....

JUST TELL US THE RESULTS--PLEASE!!!!


Molly tells us that Bailey's MRI showed changes, but no BIG CHANGES.  And gives us the "stable" result.

I feel my lungs FINALLY fill up -- Then release.

One Year of "STABLE".  Thank God!

We now can move our MRI's to 'every six months'...Which is HUGE!

But even while getting "GOOD NEWS"...It feels as though we are just waiting for the inevitable to happen. JUST WAITING until we get comfortable where we are, only to be knocked over--- I do try not to live this way...But I am just a mother....Who knows first hand how cruel NF can be...I'm just a mother, who wants to be able to tell her 'baby', that everything will be okay (and BELIEVE it)

For Now...We'll take our fresh air and our good news and run with it.

THRIVE ON!

Marijuana

I have never tried marijuana, except if you include the time when I was 10 yrs old and 2nd hand smoke was continuously blown in my face, while I was pinned down….I don’t remember much of an effect though.

I have to admit.   When I think of pot...I remember images I have seen from the movies of what being "high" looked like.   Glazed eyes, slurred speech and the unmistakable urge to eat Doritos.   "Pot Heads" was always what they were referred to and these people were reckless and irresponsible. (And they usually had to 'do their business' illegally)

Don't stop reading and get angry -- Like I have said before, I am a work in progress.

Recently, in Colorado, the buying and selling of Marijuana has become legal.   I wasn't shocked that our news has reported "record sales" and "lines around the block" from people who can finally use this stuff, without worrying about going to jail.  

All the reports and studies taken from people who smoke weed, indicated the stuff is safe.   FAR better (and safer) than alcohol, and much more preferred than prescription medication.

I have a lot of friends that use marijuana...I thought I understood why they used it....But it wasn't until I REALLY began reading about it, that I understood the real reason.   It isn't about just some relaxing - stress-relieving side-effect...Although, that is a bonus.

Every-Single-Person I have talked to, told me about how marijuana relieves their pain...Reduces their headaches...and helps them get better sleep.

Below you'll find a sampling of responses from several of my online friends – most, but not all, claiming or hoping marijuana, medical or otherwise, can help with NF symptoms, including headaches, tumors, and better sleep. Some say it reduces tumors, but I hesitate to sign off on that without more medical studies to back it up.

I can't say I'm ready to run down to the local MJ Shop and plop down $250 for a few ounces of weed, and I'm not sure I'd even go after a medical prescription. At least not at this point in my life.

But my husband asked me if I'd accept a medical marijuana prescription for our oldest daughter, who, now 18, suffers more than any of us, between back pain, headaches, and frequent nausea. It made me think, and think that I just might.

In the end, of course, I can only judge for me and my family. And with only two states on board with marijuana outside legitimate medical usage, I certainly won't advise you to do anything that will land you behind bars.

But perhaps the time for the old Cheech & Chong stereotype is over – and we need to recognize that correct usage by responsible adults may be no more harmful than having a beer as you watch the game, and may be dramatically more helpful than the medicine cabinet worth of prescriptions doctors seem to have little problems prescribing.

Thrive On – and inhale if you must :)

---

So many responses:

Anonymous - My son is about to turn 12 and has NF1. He has had multiple surgeries and has twitches and stings up and down the body plus most all other NF symptoms. He uses the whole Marijuana plant dried and ground and put into capsules. I have a medical card for myself this is how I get it for him. It helps him not have nerve stings and helps him stop his pain. instead of taking oxy, hydro, or Neurontin that he is prescribed. I also use an oil high in CBD and low in THC which is medicinal without the "high" involved. He likes his plant medicine above the pharmacy meds.

Anonymous - My son tried it and said that it made the pain worse. He is in chronic pain all the time and is also requesting that the nerves in his spin be severed to stop the pain in his legs.

Anonymous - I have NF1, and I was just diagnosed with RA/PsA and Raynauds Disease/Erthromelalegia all things that are very painful and progressive. I really can't do Narcs for the type of pain it causes me these new diagnosis on top of all the NF, BS hasn't left me with a very good prognosis and a family member recently started me on smoking a little here and there. Not a lot to lose my brain but just enough to try and take the edge off and maybe be able to relax. I do think they should make it a legal medicine as they do for cancer and some other diseases. I do feel ashamed and sometimes guilty about it at times and I would hate for my 13yr old son to ever know and my boyfriend even asked my DR in front of me if it would be ok if he got some for me and the DR said just don't tell him about it when we do...I don't do it all the time and I never drive when I do so at least I try to be responsible about but still struggle feeling guilty.

Anonymous - Its really amazing for pain. Better than other pain killers. I find that I can function more than with painkillers

Anonymous - I am trying like mad to get a medical marijuana permit here in Vermont. I have never touched the stuff until my husband convinced me about 3 months ago. He had a guy at work make me a "choc" candy (like a Reese's cup I could only eat part of it.. it took about 1/2 hour to work. will have to tell you something, this is the best sleep I have gotten in years. It was able to take the pain off -so that I was able to relax. I have had 3 choc. since and a candy like a life saver. We know how to make our own choc. so if we want to we can. I want to get legal as I am afraid to go to jail I have so much pain for a straight week at a time only 1 time a month.

Anonymous - I personally use it and it does help with my pain more than medication-- it does not relieve all the pain but it definitely helps more the medication.

Anonymous - Hey Kristi.......I treat myself with marijuana for NF pain. I've been going to a Pain Clinic in NH (I live in VT, and am closer border wise to NH than VT). NH won't give me a prescription, b/c I live in VT and they are in NH. If I were to go to a VT pain clinic, I would have to travel 1 1/2 hours.........IT DOES HELP!!!! I wish I could get people to understand this.

Hetty - My hubby uses cannabis and amino acids to manage chronic pain as a result of 20 plus surgeries due to NF1.

Michelle - here in VT we can apply for a medical permit, I am trying got get a permit as I speak.. you don't have to smoke it you can make it into candy, choc. or anything. For me, well lets just say I hope I can get legal. I have never gotten better rest and relief of pain

Amber - If I could use it for medical use I would. I've never heard bad things about it unless you abuse it – duh - lol

George - Weed is a magical herb it helps with pain, anxiety, depression, glaucoma, eating disorders, anger issues, insomnia, Yeah this shouldn't be legal but you got cigarettes that kill people, alcohol that makes people violent and over dosing on it all the time, pills that people take a hand full of and go to sleep and not wake up. It's impossible to over dose on pot you'd have to smoke like 10,000 blunts good sized ones at that and even then you'd over dose on carbon monoxide not THC. Who knows maybe if processed properly weed can help cure cancer and aids... it helps everything else why not give it a shot.

Lisa - It helps me a lot I had spinal cord surgery to remove tumors off my spine- I have ten more tumors in and out of my spine. Surgeries to remove them are dangerous and only be done when critical doctor took me off of pain meds. Afraid when I decline nothing will work, then pain meds have messed up my stomach so weed helps a lot with stomach and chronic pain

Curran - In California you just pay a doctor hundred bucks and they give you a green card - it's real simple here

Derek - Definitely helps with pain and muscle spasm. I am not sure but maybe have shrink in tumors.

Kivalina - I know someone who swears it keeps the tumors from growing.

Cindi - My daughter has NF and uses--she said it helps with the pain of NF

Ayanna - If I knew it would help my NF I would get a card and take it in medical form like candies.

Suzie - I used to smoke quite a bit and then stopped when I moved to a new country and didn't have a source. This coincided with the time that all my tumors grew on my back and chest, when I turned 30. I was symptom-less until then (apart from cafe au laits) and was only diagnosed at that point - suggests to me it may help defeat tumor growth.

Thank You all for your responses...