Frustrated with Your Doctor?

"Why are you here?"  

I went on to explain the list of reasons why we thought we were in the rehab department of the Children's Hospital.  *Pain...Degenerative Disk Disease...Kyphosis...Pain....Spinal Fractures....Rotated Disks....Pain*

This doctor just sat and looked at me....

You know that look.  That...I-don't-really-get-you-so-I'm-just-going-to-stare-at-you-with-my-mouth-dropped-open-so-I-look-like-a complete-idiot look.

His response was that HE didn't see anything wrong with Bailey's scans.

UH-WHAT!?  Did you even REALLY look at her scans!?  

IF you did, you would see that there is PLENTY "WRONG" with Bailey's back.  

She has been referred to as "The 17 yr old, 70 yr old".

"Well -- I guess we can take a look...."  The Dr. swiveled his chair and rolled close to the computer, and booted up Bailey's most recent MRI scans of her spine.

His eyes got real big and he scratched his wrinkly chin....He lets out a heavy sigh and looks over at Bailey...who is sitting on the exam table with that face that tells me she is really REALLY tired of seeing so many doctors.

The doctor wheels closer to me and asks me what kind of plan did I expect him to come up with.....

(Gee...Isn't that why YOU became a doctor?  So YOU could tell ME what kind of plan could make my daughter better!)  

I seriously should know better than to put my hopes in doctors.  But I did.  I always do...And I am always let down.  

For TWO years, we have ridden this roller coaster of placing hope in doctors....In toxic medicine...with the hopes that Bailey will get better.  She's not better.

For now Bailey won't do rehab...She will try stronger pain meds and figure out some school issues and try to live above the pain she is in.

I left the hospital frustrated.  But Bailey....She left asking if we could get an ice cream cone for the drive home.

THRIVE ON!

I Love my kids!

Neurofibromatosis on BONES!

I was watching this episode of Bones with a lot of anticipation.  I kept waiting and waiting for mention of 'Neurofibromatosis' and it came in a way I didn't expect.  I wasn't disappointed....But I wasn't overly thrilled either.

'NF' was portrayed as a sick persons disease, that "Anyone can get" (which if I didn't know anything about NF...I would think that I could not just "get"...but "catch").  

It rubbed me wrong.  It was like clever  not-so-clever product placement.  It felt forced.  It felt like the actors were just reading the back of some pamphlet.

While I am VERY HAPPY that Neurofibromatosis is getting some attention, I think we still have work to do.

And what was up with the whole keeping the secret of helping these "sick kids"...??

I get the idea of doing great things, without getting the attention for it....But, it just seemed like since we are getting NF OUT THERE and TALKED ABOUT....that we didn't need the Secret keeping story.

Anyways....That's MY 2-cents worth.  Let me know what YOU thought!!

http://www.fox.com/bones/full-episodes/17193539698/the-doll-in-the-derby  <--Link will take you to the on-line episode

Customer Service? Phooey!

I know I know...This is NOT a customer service blog....But with TWO separate things that have happened in the last TWO days...I have to vent!

I have been sitting home for the last 4 hours, waiting for my "service window", to get our washing machine repaired.  I re-arranged my entire day...Including getting someone else to pick up my daughter from Kindergarten.

Sit-Wait-Sit-Wait-Sit-Wait

8am....9am....10am....11am....THEN 12pm passes.  No call.  No repair guy.

I consider myself a fairly patient person....FAIRLY PATIENT.

But nothing and I mean NOTHING irritates me more that people who disrespect my time.  

I call the 1-800 number to see what's up.  And here's what I got:

SEARS- "Ohh I am soo sorry for the inconvenience.  Our computers are down, so the repairman does not have access to his schedule." 

ME- "Seriously?  So he's just sitting around doing nothing?"

SEARS- "He usually has a print out of his next appointment, but since the computers are down, he has no idea who is next."

ME- "That's a pretty lousy system....Do you realize that people re-arrange their entire day, just to be home for the FOUR hour window you give them?"

SEARS- "That's really not our problem ma'am and there is nothing we can do."

ME- "Nothing you can do, for the people whose days got screwed up because of YOUR computers?"

****disconnected****

Called back and was told the same thing.... "WE CAN RE-Schedule!"

Ya...So I can spend ANOTHER day, waiting!  I politely asked if the NEXT repair guy could stay and do the 14 loads of laundry I have sitting in my laundry room.

I was told I would get a call back to see if that was possible.  SIGH!

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And so yesterday...My hubby and I decided to try the new LARK BURGER, that opened up just down the street from us.  I was pumped...and ready for a delicious hamburger!

The place is cool, and trendy, with a basic menu that doesn't require a #2 pencil or good test taking skills.

We order and find our way to a small table, in the back-

A few re-fills of raspberry diet coke, using their new state-of -the-art soda machine later....and we realize that people who ordered AFTER us were now tossing their garbage and leaving.

"How long ago did we order, hon?"  I ask my hubby.....

A HALF HOUR had gone by......

We flag down someone who was wiping down a table and mention our concern....

"Ohhh We don't even have record of order # 26...."

SERIOUSLY? 

10 minutes later....We get our order, along with a shallow apology, and 2 girl certificates to come back.

Uhhh...No Thanks.   I know things happen, and people screw up....But GOOD GRIEF, at least act like you care that we waited over 45 minutes for a SO-SO hamburger.

Where oh where has decent customer service gone?

That's my Tuesday vent...It felt good!

Now back to your regularly schedule blog.......................

We're OFF Chemo!

You'd think we'd be celebrating.  Going OFF chemo is typically one of those things where we leave the hospital excited.  Hopeful even.  But I have a hard time feeling anything but fear.  Now don't get me wrong...I believe we are doing the right thing...But our "safety net" has been pulled from us.

Bailey has now been officially OFF chemo for 2 weeks.  The color is back in her face, she has more energy and the bottle of Zofran hasn't been touched.  Good news for Bailey came Friday, when the doctor came into the exam room and read the MRI results.

STABLE!

I never thought I could love a word so much.

Stable means that we can breathe for the the next 3 months.

Sort of.

This is the first time, since both tumors were discovered that we won't be on chemotherapy.

My "friend" FEAR, is back.

She comes around every now and then, and I have to remind myself, that I am the in control.  I have the ability to release the choke-hold it has on me.  I can tell FEAR to "take a hike!"  But sometimes this isn't easy....I get scared all the time.  Sometimes FEAR wins.  Especially when it comes to the health of my children.

Even while fearful...Of "What if's"....We aren't sitting around letting it swallow us.  

We are USEFUL in our FEAR!

We THRIVE in Spite of FEAR!

THRIVE ON!