Wednesday, October 9, 2013

How Dare You!

So, I get this "anonymous" comment -- Strange how all the negative comments come from "anonymous".

Makes ya wonder.

Anyways, the comment said "How dare you..." Blah blah blah  "show pictures of Neurofibromatosis" blah blah blah "It's shameful that you claim to THRIVE with NF, but depict NF in such a negative way..."

Some other stuff was thrown in there too....But I didn't bother reading it.

How dare I?  Really?  What?  Show the reality of a disorder that is EXTREMELY VARIABLE and so wide-spread, and someone out there would actually benefit from being educated on not just the MILD form of NF, but also the SEVERE forms that exist?

What good would I being doing ANYONE, if I just blew sunshine and roses out there to the world?  I live with NF.  I know the good, bad and the ugly of this disorder.

I WILL continue to uplift, educate and sometimes share in somebodies sorrow when it comes to Neurofibromatosis...THAT'S REALITY....THAT'S part of THRIVING with Neurofibromatosis!

(Bumps and All)


  1. Keep doing what you're doing Kristi. People are scared of what they don't understand. NF is so scary. But YOU do a marvelous job at showing the FULL picture.
    Hey 'anonymous' why don't you lighten up and see the good that Kristi is doing? Why don't you step back from your fear and ignorance, and allow yourself to be educated?
    Do you not think Kristi is scared of what NF could be? But still she writes and shares--and helps people through very difficult times.
    HOW DARE YOU try to bring her down to your level...A level I never ever would let myself be at.
    HOW DARE YOU 'anonymously' comment such crap?

  2. Agreed. And quite frankly those are the pictures that will get people talking. And, if people are talking they will be more aware of NF and what it is. And, if they are more aware, then perhaps they will donate to CTF or any other organization that helps fund research for NF. And, if they donate and there is more get the picture...that's why we tell and show everything and everybody about NF. It's a terrible disease and more people need to know! And help. :)

  3. Kristi,

    Thank you for sharing as you do the "good" the "bad" and the "ugly" of NF. What you share and the way you share are a great encouragement to me. Keep it up!


  4. Hey "Anonymous". Bite Me! HahHAHAHAH

  5. Truth is that the only way to thrive is to know everything!! The less you sugar coat the reality the better off you will be!! I have NF and I want to know about others that have my disorder because it affects every single one of us differently!!
    Chances are either 'Anonymous" does not have NF or if he/she does then that person is not ready to accept the disorder and how it is/has affect his/her life. Wake up and smell the roses!!!

  6. Obviously this individual is one of those with a big opinion, but probably little knowledge about the subject. What are those with NF suppose to do? Crawl under a rock and hide from the world? Does this person feel the same with about everyone with a illness or disability?

    I've taught my daughter she can do it all and more, just like any abled body person can. Just because she's in a wheelchair is not a reason to hide from the world, but rather the complete opposite! Show your difference to the world, and both she and the people around her will be better for it.

    And I don't care what anyone says, you can to thrive, live, love, play, be happy, and live an amazing life while steal dealing with all that NF is!!

    Good for you for standing your ground! And shame on them for expressing their opinion while hiding and being ashamed. If anyone should be hiding from the world, it should be them!