Thursday, August 20, 2009

Freaky Friday

One of my favorite Disney movies!. A young teenager is granted her wish, to switch places with her mother. Their experiences turn out to be quite difficult. Turns out, the grass isn't always greener on the other side.

If I was to be granted this wish....I would probably want to switch places with a well known doctor. So that they could truly experience, what it's like in a NF body. Perhaps learn something.

And me? I could experience life without NF. The pain would be gone. The stares would go away. And I would be "normal".

But I wouldn't want to stay there long. I'd want to come back to everything I have right now....because, it's ALL good...and it's mine :)

The tumors and headaches, yea sure, I'd love for them to go away....But they are what makes And I'm happy with that.

Who would YOU switch places with? Tell me why.

Have a HAPPY FRIDAY and be Safe!



  1. If I could switch my body for a day it would be with mom. she never wanted to acknowledge my disease. she never wanted to admit that it could have come from her side of the family. she never knew her biological father.nor did my dad his biological mother. I can remember them "blaming" the other instead of focusing on me.My mom can't even take an aspirin. I am on 24 different meds a day.I've had many sugeries.I suffer everyday,it is very hard for her to accept.I would want her to see a day in my life. The stares,jokes,pain,emotional issues when a man see's me naked for the first time.I know that I will die without her ever accepting me as the one that wasn't normal.The cursed child.But in my heart I am strong.I persevere.I am proud of how well I have handled this disease.I was diagnosed in 1970.My mom took me to a neurologist once. I had surgery once while with her. I was 5.She never ever took me to a neurologist again.The next time I went to a Dr. was @ 17. It was a guardian who took me in.She worked in a well known hospital. I have been going there ever since that day.I am now 45 still alive and thriving with NF.But for all those years that I was not followed, taken care of,for all the pain and suffering,all the pills I have to take.I really would like for her to see what I see in other peoples eyes.The pain and humiliation. Just for that one day. She could never ever handle my pain for more than one day.

  2. there are a few people that are or have been in my life that i would like them to know how it is. maybe then they wouldn't be so quick to judge.
    i wasn't diagnosed until age 46 when i had a weeks stay in the hospital for a severly blocked bowel, even tho the year before i had a neurofibroma removed from my leg. the surgeon said i couldn't have NF because i looked just fine. just goes to show the lack of knowledge about NF.
    looking back at my medical history it would have been clear from the age of 2 that i had it. i had a huge astrocytoma at the back of my head at 2 and 1/2. they didn't even want to operate i was that bad but- they did, i'm here, 57.
    the biggest thing i wish was that people and educators would have known of the learn disablities back when i was in school. THAT would have changed the course of my life so very very much.
    it's o.k. kids are very resilient.