Friday, September 21, 2012

What Makes You Think You Have NF?

I just got back from the Drs.  I swear, I have seen the Dr. more times in the last 6 months, than ever before in my life!  This wasn't for NF related stuff, surprisingly.

I have ulcers....Thanks to a little bacteria in my blood called H-pilori.

I've been having a lot of ulcer-related symptoms, so I thought I'd go in and get it checked out.

The tiny office I go to was swarming with other doctors...Most of whom I have never seen before....Some sort of conference was going on, I'm not sure.

Anyways....I get to my room (but first stopping to weigh myself...And I have to say that I was actually excited to step on the scale!  I have been TRYING to lose weight actively since February of this year and been pretty successful at it!)  
The nurse tells me to strip down from the waist up and wear the lovely paper napkin shirt...So I do as I am told and sit on the exam table for what feels like an hour....

Wait Wait Wait

A nurse pops her head in to ask me if it would be alright if one of the visiting Drs comes in to "have a look at me".....She goes on to say that "Neurofibromatosis is SOOOO rare, that some of the doctors were wanting to see me....." 


I smile and say- "SURE!"

A few minutes later, a handful of nicely dressed doctors come into the room, squeezing around the exam table.  I shake hands with a few and smile my sweet....(great I'm a guinea pig) smile.

"So...What makes you think you have Neurofibromatosis?"

HUH?  Was I seriously being asked this?

I bite my lip and gulp down a lump in my throat.


I open my paper napkin shirt and showed them WHY I think I have Neurofibromatosis.

Yeah...So I flashed these doctors.  What was I supposed to do? :)  (Krazy Kristi winks)

The drs asked if they could exam my back as well.......I tell them, 
"Well it's not nearly as attractive as my front, but go ahead!"  :)

I gave a brief family history ---"Mom, brother....."

One doctor told me that NF was REALLY rare, and it was nice to meet me....

I explained to HIM, that Neurofibromatosis was THE MOST COMMON GENETIC disorder know to humans....and that it was NOT so rare.  Impressed -The Dr again shook my hand.  I thanked him for his willingness to learn....then everyone scooted out.

Ok...?  I was alone again for a few minutes, when my regular DR came in.....

I left the doctors office feeling....I don't know....Weird.   Did I teach those drs anything?  Would any of them think of NF differently?  Could I have done MORE?

Anyways...I put myself out there--I guess THAT'S what matters.


Tuesday, September 18, 2012

Happy Birthday to my Girls!

A month after I married Rich, I discovered I was pregnant.  It was a shock, but he and I prepared ourselves for our little bundle of joy!   Half way through my pregnancy, I found myself in the hospital facing Riley's premature birth....But thankfully, the swift action of my obstetrician stalled my labor and surgically put in a cerclage, to keep my cervix from dilating.

I was placed on strict bed rest for the next 4 months.

At 38 wks ...The Dr. removed the cerclage and expected me to go RIGHT into labor.  HA!

Riley Elizabeth waited another 2 1/2 weeks, before my OB decided I was WAY too swollen and uncomfortable to continue with the pregnancy.  She induced labor and it would be another 12 hours before my baby decided to give in, and be born!

This is Riley.  She is stubborn.  She is smart.  She is funny. She is AMAZING!

I love you SOOO MUCH!

Happy 12th Birthday!

I had JUST driven a 20 foot moving truck from Washington to Utah.  I was 8 months pregnant and had gained about 50 pounds.  I was extremely uncomfortable.  After the move, I immediately set myself up with the OB that had delivered Riley and Rachel.

It was THIS pregnancy when Neurofibromatosis slapped me in the face.  
NF was recognized for the first time in my 33yrs....

Brooklyn's "due date" was September 11th 2007.

On September 18th....I had my OB check up and the DR took one look at me and told me that it was time to get this baby OUT!  I immediately went home to talk to Riley...Her response was so cute...."Well Mom, I know you can't exactly HOLD the baby in....So I'm fine with having my baby sister share my birthday...Go, give birth."

I was determined to labor with OUT pain meds, just like my other births...But Brooklyn's heart rate started to slow down, with my contractions.  We waited an hour, to see if I would progress fast enough, but that never happened.

Brooklyn Grace was born via emergency c-section (my first csection) and was perfectly healthy. 

This is Brooklyn.  Always doing things HER way.  Smart.  Funny.  And AMAZING!

I love you Brooklyn Grace--Happy 5th Birthday!

Tuesday, September 11, 2012

September 11, 2001

I know that there will be endless blog posts from people about this day.  There isn't much I can say, that others haven't already beautifully expressed.  But this is a day of remembrance....A day to pay tribute to the lives that were lost, and the lives that continue on, in the shadows of a devastating tragedy.

I will make this short.  We all can remember where we were on this day, and what it felt like to watch this unfold...So today, just take the time to give THANKS and send a prayer up.  Do a positive and kind gesture to a complete stranger....Something that makes a difference! :)

We can't change the past...But we CAN give hope to our future!


Monday, September 10, 2012

4th Annual Denver NF Walk

Do you ever feel alone having Neurofibromatosis?  I know that there are times when I feel so consumed by everything we are going through....So alone and isolated with all that NF throws at us, that I forget that there is a whole community of NF families out there...Who are going through some of the same stuff we are!

September 9, 2012 was the 4th Annual walk for Neurofibromatosis Awareness. 

You may feel alone, isolated, afraid and angry...But it's only when you step out of those emotions, that you can see a world who suffers with you....And it's when you step out that those emotions and feelings are replaced with HOPE & HAPPINESS!

Social media, like Facebook and message boards are AWESOME....And I have nothing bad to say about them...I use them every single day!  But, if that's as far as you take "reaching out"...You are missing out on a world that is ready to embrace you, and all of the challenges you are facing.

REAL LIFE support groups are ALL around you!  

WWW.CTF.ORG is a great first step in finding a local NF group.  If you don't find one in your area....Contact CTF and ask about what it would take to start a new group.


If you have the will and the motivation -- ANYTHING can happen!



Wednesday, September 5, 2012



We were asked several times if Bailey had been in some kind of accident....Has she experienced any trauma to her back....If there could be ANY explanation for the condition the imaging showed.  There MUST be SOME explanation....Right?!  One would hope....

The doctor explained to me, that the imaging showed a severe form of 'degenerative disk disease'...and that if he had never met my 16 yr old daughter....He would have thought he was looking at an image of a 70+ yr old woman.  *nice--eh?  I think I've heard this from another Dr-->  Blog about the findings in MY MRI

So what is DDD?

The first thing I read, when I began researching this was that as a person ages, their body obviously begins to break down.   Spinal discs are soft discs that separate the interlocking bones (vertebrae) that make up the spine. The discs act as shock absorbers for the spine, allowing it to flex, bend, and twist. Degenerative disc disease can take place throughout the spine, but it most often occurs in the discs in the lower back (lumbar region) and the neck (cervical region).  Bailey's pain is in her lower back.

Web MD lists the following as to WHY DDD occurs-

  • Loss of fluid in your discs. This reduces the ability of the discs to act as shock absorbers and makes them less flexible. Loss of fluid also makes the disc thinner and narrows the distance between the vertebrae.
  • Tiny tears or cracks in the outer layer (annulus or capsule) of the disc. The jellylike material inside the disc (nucleus) may be forced out through the tears or cracks in the capsule, which causes the disc to bulge, break open (rupture), or break into fragments.

  • OK...REALLY.....I want an ENGLISH reason for WHY my 16 yr old daughter has a "Severe" case of DDD....

    As I searched more....

    Those with DDD, are typically very active, sport playing individuals who are older and have lived a full life of 'doing stuff'.  This does NOT describe Bailey at all.

    This promted Bailey's doctor told us that Bailey's case is very rare.  *wow - if only I had a dollar every time we have heard the word "rare", when telling us about a new diagnosis.*

    Sometimes-- there isn't a "WHY".  Sometimes, things just are what they are.

    So what do we do?  

    We Thrive Anyway.  And continue to spread a message of hope.  We don't let another diagnosis stop us from living.