Monday, May 25, 2009


Waiting for results on any medical procedure drives me insane. I even find it difficult waiting for the
little post card in the mail, telling me my pap smear was 'normal'. Ugh
I guess waiting in general, drives me nuts. I'm the type of person who wants results NOW! Don't tell me it will take 2-4 wks to find out.
Rachel's MRI results took 3 days to come back.
I kept my mind busy, with other things during this wait, but in the back of my mind, I knew we were going to get bad news.
Now I tried to push that belief away, and think positively, but you know how it goes, reality of this disease is that its most likely going to be 'something' rather than 'nothing'.
Our pediatrician, doesnt know much about NF...hell, when we first went to him and I told him about it, he got his lap top -- opened it up and googled the disease.
I told him that I knew more about this disease than any internet site, and if he had questions, he should just ask me. LOL
So anyway, this young Dr calls me up while I was on a play date at the local mall. He stumbles through the chart notes and cleared his throat. "Umm Ms Hopkins, there seems to be a mass that was found. Umm, yea a mass, and we need you to follow up with a neurologist."
Yeah right, he wasnt getting off THAT easy! "how big? on the optic nerve? what will this mean? Side affects? things I should look for?---TELL ME TELL ME TELL ME!"
He had no answers. Jerk.
He wanted to review them more in depth and call me back. He never did. Double jerk!
After hearing this news, I wanted to go pick my baby (6 yr old) up from school and just hug her.
Squeeze her, and let her know how amazingly important she is to me.
Damn this NF.
As I hung up the phone, emotions flooded me. But I was on a play date....with women who don't
understand. THEY have perfectly healthy children. They saw my eyes filled with tears and asked me
about the phone call.
All I said was that they found a mass in Rachels brain....of course to THEM....the mass meant cancer. I told them about NF, and how this isnt cancer......and one of the mothers reply was "Ohhh well thats good then".
I wanted to take her to the floor with a sucker punch! "THATS GOOD?" WTF.
Yeah - Im glad its not cancer....but its FAR from GOOD. just goes to show you, how ignorant people are. They need to be educated. People need to know about NF and how greatly it affects lives.
I plan on calling back the DR today and get some answers.
Just more waiting.....have I said how much I HATE HATE HATE waiting?


  1. Hey, Kristi, if you need to talk about any of this, you can call me. I don't understand NF, that's true. But I DO understand having a chronically ill child. I DO understand havign a kid with a disease or defect no one knows anything about and so it must not be THAT bad.. ya know, if it's not Cancer. I DO know that.. So if you need an ear, I'm here for ya!

  2. Thanks sweetie---you are a GREAT friend!