Doctor Doctor - Give Me The News

I know most people can't say that they are excited to see the doctor...But I was.  I was SO excited in fact, that I had a completely different blog post already written, in anticipation for this visit.   Let's just say...this visit...didn't go as planned.

First...Why-in-the-world-would-I-be-excited-about-seeing-the-doctor??

Well aside from being sick with a cough for 3 weeks and needing refills on my prescriptions, I wanted to be able to "OFFICIALLY WEIGH-IN" on a medical scale...And possibly have the chance to brag a little about how much weight I have lost. 

I didn't want high-fives...or a parade ... BUT I DID want something other than what I got.

"Hmmm You're overweight" The DR says as she walks in the room....(no --'hi... how are you?')  "Are you watching your saturated fats...?"

Wait....WHAT?!

My heart sank.

"Have YOU looked at your charts Doc.?  What is the last weight you have?"

She tells me 203.

Then tells me that according to the "Ideal Weight/Height Chart" I was still considered "overweight"...and that "I had a ways to go".....

COMPLETELY missing the fact that I was 80 pounds lighter than the last time I was seen.

I'm sorry....But my balloon was deflated!

I know it's not the doctors job to make me feel better about myself....

Wait.  YES IT IS!  That's what we PAY them for!

I couldn't believe it.  I was crushed....Hurt....and feeling like ALL THAT HARD WORK I WAS DOING DIDN'T MATTER.

(I know it DOES matter...But the doctor got me to a place I never wanted to be)

Who IS SHE anyway?  Why did I allow HER negativity to affect me so much?

It's 'cause I am obviously still working on myself.

I have lost a total of 118 pounds (according to the highest recorded weight) and even though it has taken 2 years of REALLY hard work....My insides have a LOT of catching up to do.

If I went by "ideal weight"...I'd be 105 pounds...Yeah...In an IDEAL WORLD, where I'm not almost 40 years old....Had SIX babies...and had perfect genetic background.

Charts--Graphs--And Ignorant Doctors can bite me.

 Negativity has NO PLACE in this new body.

THRIVE ON!

"To The Fatty Running On The Track This Afternoon"

This was taken from a Facebook user....And while it COULD be a made up story...I wanted to address it anyway.

First of all...Who do you think you are?  You may be lapping this person, but WOW....I think you totally have WAY too much time on your hands....

To first off address the person as "Fatty"...You show NO COMPASSION--In fact you are nothing but a school-yard bully....who twists and turns your way out of trouble, by manipulation!

Judgmental--Sterotypical--And just plain mean.

I bet that "FATTY" isn't looking up at YOU, because they see YOU looking and judging them and making up some stupid scenario  - while your perfect body whizzes around the track effortlessly.

I am one of those people who was ashamed to go to the gym, because I was "too big".....I thought people would stare and whisper about the "Lard-Ass" who couldn't last more than 10 minutes on the elliptical machine....AND YOU...just proved me right.  Shame on YOU.

But you know what....?   People like you, haven't stopped me.  Go ahead and make your assumptions about late night snacks and beer guzzling (none of which I take part in...)   Because YOU don't really matter.  I have dealt with ignorance my entire life....And you....Are just another bug, to be flicked off my shoulder.

YOU'RE RIGHT ABOUT ONE THING....

I'VE GOT THIS.  

But...NOT because of YOU

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!

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!