Monday, October 19, 2009

Turn it around Tuesday---THRIVE!

I have bad days. Do you? Sometimes I have REALLY bad days. I look in the mirror and see what's going on with my body, and I get so angry. IT'S NOT FAIR! I cry as I see the tumors multiply....what will I look like in a year? In 5 years? In 20?

Neurofibromatosis is a progressive disorder. It's cruel and steady and has no sympathy on who it touches. I hate it so much some days, that I find myself reaching for the razor blade, as I did years ago, when the first tumors began to show themselves.

I was in my 20's when a tumor grew fast and large on my neck. Desperate, I sliced through the tumor to remove it from my flesh. I didn't care about the physical pain it caused me, for its mental pain was far worse. Little did I know back then, that this was only one of thousands that would try to ravage my body.

It's hard for me to look in the mirror, without noticing the tumors. I deal with the ones on the surface, and others that are deeply intertwined, attached to nerves, under my skin. NF, for me has been a hard pill to swallow. It affects everything I do now. I can't cover it up and hide anymore.

How can I possibly live a normal life? How can I be with a man, an expect him to not be repulsed by the sight of me? Can I walk around, without stares and finger pointing? How can I teach my children a positve self image, when I feel so terrible about my own?

I don't have the answers to all of these questions. I wish I did. But I do know this, you pick yourself up, dust yourself off, and CHOOSE, to live. You CHOOSE to thrive. There are times when I don't give a damn about what people say, or think about who I am....and I need to start living that everyday.

This is what God handed me....what will I choose to do with it?


  1. I have the neuroma's too. I have come to except them myseld.. I notice the older I get the more of the neuroma's.. To me, it is what is on the inside that counts, not the outside..

  2. Like you Kristi, I have thought the same things about my appearence as well. With my mom her tumors rapidly appeared all over when she was pregnant with me. And it has scared me that if I can have kids, I don't want to look like her b/c I have already have dealt iwth enough criticism and being teased over the years. I can remember this like it was yesterday: when I was in 2nd grade (1992-1993) I remember kids making fun of how my mom looked b/c of all the tumors she had her. And since that moment it has made me think what my appearence will like. Luckily right now there has not been a progression in the number of tumors I have but I know that will change.

    I am also sending you some quotes that I hope cheer you up xoxoxo:

    "Sometimes the heart sees what is invisible to the eye"- H.Jackson Brown,Jr.

    Don't judge a book by it's cover"

    "Your heart will always make itself shown through your words"

    Know and believe in yourself, and what others think won't disturb you"

  3. this resonates with me too ...I could write the same agonising words (hugs)

    I got an email recently from Reggie Bibbs and he is so inspiring ...he said we have to hope for a cure and keep pressing on.

    Some days are hard , some are harder still but we will thrive.
    Much strength, love & prayers to you.

  4. You are an inspiration to those around you.

  5. Kristi

    Well said. Keep on Thriving!


  6. I have neurofibromatois as well. I have never been diagnoised because like many people I do not have any type of insurance.

    I am 33 years old and have lived my whole life afraid of commitment, because then one day I would have a man like my father who yelled and insulted my mom for her appearance.

    Everytime I look in the mirror i look at the few tumors I have and want to cry. What am I going to do when i have a lot of them? When I go out and people stare? Why can't I be like my cousins and not have any sign of it? Why did our side of the family get it and not them?

    My sisters are 49 and 48 and have many tumors, with more appearing every year. They have had a few larger ones removed, so far without them coming back.

    I have a somewhat mass on the palm of my hand that I have hid forever. I never reach out my right hand without covering it. I hate hiding.

    Thoughts keep running in my head of never having a real life...