Rare Disease Day

Chances are, you have been to this blog before.  You either know me personally...Or have gotten to know me on-line.  If you know me personally...Then you know that I don't quite fit in...And if you think that I do...We should seriously spend more time together. :)

I'm weird.  I know it.

If you have come within 2 feet of me...You also know that I don't look quite normal.  If you have been afraid to ask...I get it.

My eyes are dark and sunk in....I am short...And awkward.  I have small bumps that line my face and neck. The tumors also partially cover my belly and back.  I don't typically offer any explanation, unless someone asks me about it....Even then...I sometimes feel like I could do a better job.

I have Neurofibromatosis.  If you 'Google' it....You will see images that will probably frighten you.  And the odds that you have come across someone with NF are rare...But, NF, in fact is THE MOST common genetic disorder known to exist in humans.  

NF is far from RARE.  

But I thought I'd share a little about what NF looks like for our family

Tumors don't just grow on the outside of the body...

These are MRI images of the brain of my now 18 year old daughter with NF.

Very typical...Splotchy - Spotty skin

Yep Tumors...I have them all over.  I'm not contagious. I promise.

I may look a little weird to you....And you may wonder what the heck is wrong with me.  To YOU, I may be the rarest thing you have ever seen....And that's okay....Just don't let THAT keep you from becoming my friend.

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!

You Should Consider Yourself Lucky

Today's post is inspired by a lovely comment I received, from none other than "Anonymous".  Thank you 'Anonymous' for helping to cure my writers block-

"Are you for real?  You should consider yourself lucky.  My son has a REAL disability and the bullshit you complain about is ridiculous.  I also live with daily pain and I am basically confined to my bed or couch.  What do you have to complain about?   Anonymous"

I swear, if I could be given a dollar for the times I have heard something stupid being said to me about Neurofibromatosis, I'd be a millionaire.  I am so tired of having people - (who are trying to get to know me) telling me how "GOOD" I have it.

I have it GOOD, because my children don't have a REAL DISABILITY?

Seriously?

It is true that none of my children are in wheelchairs.  All of my children can speak complete sentences and eat with a fork.  But to tell me that I am lucky?

Do you even know what having Neurofibromatosis means?

It means at ANY moment, our world can come crashing down.

My oldest daughter, her name is Bailey, if you care at all.  Is LUCKY enough to ONLY have THREE brain tumors.  TWO of those could take her hearing, her balance and possibly her LIFE.  The other one...?  This is the tumor that put her through TWO years of chemotherapy.  Only to be told the chemo didn't work, and her tumors are now LARGER than when we began.

THAT CHEMO....DESTROYED her body.  Her spine?  Is that of a 70 year old woman.  Degenerative disk disease, fractures....Not to mention how weak my daughter became.  She has constant...daily headaches.  Is dizzy ALL-OF-THE-TIME.

Am I lucky she is still alive.  Absolutely!

My son.  He's 16 years old and had plexiform tumors throughout his spinal cord.  In his left eye....An optic glioma.  This tumor may or may not grow...Affecting his vision in an unfixable way.  His other eye...We were "lucky" enough to be diagnosed with a very rare retna condition....That, overnight, could take his vision...But YES....You are right....we are LUCKY, that is hasn't.

My 11 year old?  She also has NF.  Right now, bless her heart....She is LUCKY enough to JUST have minor vision issues and some "spots" on her skin.  BUT...she also has Sensory Integration -- which means ANYTHING can set her off into a tantrum.  Smells, tastes, sounds, touch....EVERYTHING in her world, is like having a speaker right next to you ear, turned up ALL THE WAY.

But Yeah....I'm LUCKY because Rachel....Has the sweetest spirit I have ever seen.  She smiles all the time...And works hard in school...And never gives up.

Oh I almost forgot about ME.  I have Hydrocephalus, and a brain tumor....I have tumors growing out of control, all over my body.  Dizziness...headaches.....

But.  You're right.....I AM ONE OF THE LUCKIEST PEOPLE IN THE WORLD!  Know why?

Because I see the world different than you see it.

THRIVE ON

The Biggest Loser

I haven't watched the episode yet....But the BUZZ was too much for me to resist.  Rachel Fredrickson was my favorite from the very first episode.  We had a LOT in common-- I wasn't an athlete or anything...But we started our "journey's" at almost the same starting points.

I almost can't believe the images I am seeing.

At 5'3" and 105 pounds....Something isn't right.

Sure I see the competitiveness of the show....and In Rachel's defense-I understand the desire for the TITLE....But MAN...THIS is hard to see.  Even harder to explain to my young children, who watch this show with me....

(The SAME kids who have seen their own mother struggle with weight issues.)

I've lost 115ish pounds....But I have done it over the last 2 yrs...And I haven't done it with cameras and a million people watching me...But I get the struggle.

All my best goes out to Rachel....AND anyone struggling with weight issues.  I hope that the people in this young woman's life are there to help guide her down a HEALTHY lifestyle.  After-all...If you aren't LEARNING -- YOU AREN'T CHANGING....and changing is the only way this girl will become HEALTHY!

THRIVE ON!

(after about losing 70 pounds)

Where I am now -115 pounds

I'm Addicted

I have a weakness....

***GLUG GLUG GLUG***

An ICE-COLD Diet Coke screams at me from the refrigerator.  

I WANT IT.  

IT WANTS ME.

We stare at each other with longing affection.  (We've been together for over 20 yrs, after-all)

I caress it.  And gently crack it open...as the carbonation pops with delight.  I press my lips gently against .......

Ok enough.  Yes....My relationship with Diet Coke is a steamy one.  We've been through a LOT together....And there hasn't been a day, my "sweet friend" hasn't been there for me.

Even while knowing all of the "dangers" involved with drinking this stuff....I can easily down 2 liters a day....AND, it was only when I began writing down EVERYTHING I was eating and drinking, that I realized how much soda I actually drink..../drank :)

Why would I keep doing this to my body?  

I kept justifying the "safeness" of my Diet Cokes, by saying "Well....I've lost over 100 pounds drinking it....So what harm am I doing...?"

Well.  LOTS, actually.

Even after losing all that weight....I still felt sluggish.  Lethargic.

I would get headaches....and feel nauseous.

Drink a Diet Coke....AND BAM!  I'd feel better.  For a little while anyway.

Hmm.

I decided that I would first rid the house of ANY trace of my beckoning little friend, and start fresh!

Here's how it went down............

FRIDAY MORNING-  I finished off the LAST CAN in our fridge and VOWED to not purchase ANY more.  The day went surprisingly well....And I got ALL of my water in.  No adverse affects and NO paramedics were called!  :)  

SATURDAY-  I usually wake up, go to the bathroom, weigh myself....get depressed....Head upstairs....Open fridge, grab a can of diet coke/pepsi....CHUG it.....Make whatever for breakfast....grab another can.....and make that one last until Lunch......

But....what I did instead was.....Wake up, went to bathroom, weigh myself, got depressed...Headed upstairs....filled a glass of water to the tippy top and chugged.  Made eggs for breakfast and waited for that UNMISTAKABLE urge to come.   IT DIDN'T.

The day went on....And I had many opportunities to cheat and buy a soda....(The dollar store in particular)

One cool thing about this....Or maybe not....Was that I told my kids to help keep me accountable.  Which means....Basically....I wanted to buy a soda, and I had my kids there telling me..."We'll tell Daddy if you do......"

So I didn't.

I drank about a GALLON of water on Saturday....No headaches.  No shakes.  No nausea...AND WOW.....I HAD A LOT OF ENERGY!

Then came SUNDAY - 

CAFFEINE.....MUST.....HAVE.....CAFFEINE!!!!

ESPECIALLY with church....I mean COME ON!!!  

But with NONE in the house....and NO TIME to go and sneak some...I had to deal with plain water.

By the time church let out....I could feel my body LONGING for just a sip of Diet Coke.  I had an opportunity to buy some, when my hubby sent me into the store to buy some SUPER BOWL fried chicken....

I saw the bottles lined up in cute little rows....Like little soldiers....I swear I could hear the bottles calling to me....."Krrrristiiiii....Krisssstttiiiii....Commmee back to usssss......"

I resisted.

Bought the chicken and headed back to the car-

I watched as my family teared into that fried chicken....Like vultures on the attack, after a long starving.  It was quite the sight really.

I did not indulge in the chicken either.  I stayed good, quietly chomping on my mixed salad and sipping my water.  

I could feel it though....The longing.  The desire.

I could cheat....No one would know.  

I could easily slip out of the house and drink a 20 ounce bottle....

:::::JUST DO IT KRRRRIIIIISSSSTTTTTIIIIII......YOU KNOW YOU WANT TO::::::

Must NOT GIVE IN.  MUUUSSSSTTT STAY STRONG!!!

:::::::RESISTANCE IS FUTILE:::::::

Ok....So I have been watching WAYYY TOO Much Star Trek :)

I didn't break...And I didn't give in.

I made some Super Bowl treats for my family...As well as a crock-pot Lasagna and stuck to my water.

Another GALLON - Yum.

I watched my Broncos lose....

What I wouldn't give to be drowning my sorrows in a Keg of Diet Coke.

Water....MUST DRINK WATER.  *sigh*

MONDAY.  THIS IS DAY FOUR!!

Studies I have read say it can take up to 10 DAYS for one to "get over" the affects of caffeine/Aspartame addiction....So I am ALMOST half way there.

I worked out at the gym with my husband and have had about 32 ounces of water -- 

I feel good.  Well....Kinda....I know that this "break-up" needed to happen.  My body deserved it.

I'll let you know how things are going--

For Now,

THRIVE ON