Friday, August 28, 2009

Freaky Friday

It's been on the calendar for months and basically forgotten. When the day finally came, I wasn't nervous. I didn't expect to hear anything I didn't already know. The Neurologist would say, "Neurofibromatosis"...I know, I know...”bright spots in the brain” Blah blah blah. But that's not what the she said. The 4mm mass is in a spot where the neuropathways connect the vision. If it grows, “we're in trouble” she told me.

TROUBLE? It seems if the tumor grows, it could greatly impact my vision. Not having anyone there with me at this doctors appointment, is now something I regret. I wanted to hold someones hand. I wanted someone to put the arm around me. The walls of the small room, closed in on me.

“You also have extra fluid and very swollen ventricles”. **Note this MRI was taken in MAY....It's now AUGUST!

I explained my painful headaches, and other strange quite weird one.....very recently, while working on the computer, or writing, my index finger will suddenly feel “wet”. I pull my hand close, and wipe it with my thumb....but the finger isn't wet. The Dr. explained this is symptoms of seizure.

After doing a full neurological exam, she told me about the tests that I would need to have. She wants to test the fluid flow in my see if there is a blockage. I will also, have a spinal tap. A full visual field will be done on a every 6 month basis.

Before the appointment, I printed out some NF fact sheets. I showed the sheets to the DR. and she loved them. I told her about my websites, t-shirts and blog. She was very impressed.

I kept thinking, that there was no better time, to show how I am Thriving with NF!

On the drive home, I felt a peace over me. Although I do worry about what is to come...I am not worried about getting through it.

Neurofibromatosis, won't scare me. I won't let it win. I will fight this with everything I have.

Thank you Lord...for my family
for my children--
who give me the will
to keep pushing foward.
Watch over me--and them


  1. (hugs) how scary Kristi - you inspire me so much with your strength and tenacity. You are a strong and brave lady of the Lord.

    I have had a few odd twitches and weird things happening so I am going to get a referal to a neurologist.I had a CT scan a few months ago and it was all okay never had an MRI though.

    I will be praying for you Kristi