Monday, May 9, 2011

Weird Like That!

I've always been different.  Growing up, I was the girl with holes in her jeans and messy hair. The "chubby tomboy", or even just the "weird girl".

Now that I'm in my mid-30's, not much has changed, other than the fact I'm much more likely to use a brush.  :)

I'm still very much a tomboy and I still wear jeans with holes in them. I know that I will never fit into a size 2 dress...I prefer football to ballroom dancing...and I know my way around the kitchen as well as under the hood of a car.

I am still the "weird girl"....The one who gets laughed at, and pointed at, whenever I go out.  The one who hears people whispering as she walks by.

Heck, even within my own unique group, (those with Neurofibromatosis), I'm weird. I have kids that don't follow the 'known' path for the disorder, developing tumors and fibromas long after the risk should be gone. It has even happened to me.

I briefly touched on this last week, but I have a new friend in my right leg. A tumor about the size of an apple has grown, seemingly in the last month or so. Its big enough to be seen when I wear my jeans. Its thick enough to block feeling, such as cold from an icy 32 oz McDonalds Diet Coke. Its painful enough to make walking more and more of a chore each day.

Wednesday, I'll be getting an update on dealing with my headaches and hydrocephalus. You can bet I'll be bringing this up as well. I've been told it may be possible to remove it - though it may not be deemed 'medically necessary'. I've also been told it could be so entwined with my leg, and in danger of growing so large, that I may become a matching bookend with my husband - eventually amputating my leg from just above the knee - SHUDDER.

Tough to Thrive in the face of that kind of reality, but I plan to anyway. Guess I'm just weird that way:)

Thrive On!

1 comment:

  1. weird but i love you.. I hunny i would do surgery to remove the tumor before any thought of amputation.. i know its scary but i have been in that boat.. you can get it done.. it will hurt but its better than just diving all in.. right.

    no matter that tho. you are loved, i will love you, and will support you through every step of the way.. even if its a painful step. ill be right there with you .

    It will be okay, and the answers will come.. keep pushing. and ill be behind you pushing you if you feel like u cant push on .