How I am battling Neurofibromatosis.

I started getting ill on August 25th, 2003. That is when I SNEEZED BLOOD! THAT scared me! I got up to get a kleenex for my nose. I was in a cast on my left foot because I had messed up my achilles tendon in the Home Depot parking lot. I did THAT on July 24th, 2003 in Southlake,Texas.

Well, I tripped on the carpet because it was bunched up together and I went head first into the doorframe! I hurt my shunt, or so I thought! I had to put ice on my shunt, on the left side, for about a day and a half, and then put heat on it! I still put heat on it TO THIS DAY! It will be 5 weeks on this Monday since I injured my shunt!

So, the next day, school started at the junior college. I was taking 2 music courses. Now though, I am only taking 1 music course. The direcor chair of music DROPPED me from the department I was signed up with music, Section 22481, but DID NOT BOTHER TO SIGN ME BACK UP IN SECTION 22482 WITH WHICH SHE HAD ALREADY PUT ME IN AND I HAD BEEN ATTENDING CLASSES! So,I do not have the money to sign up again and plus,I think it just may be a sign from GOD to not bother with a Music course right now, because of my throat, so I decided to just leave it dropped, this semester. It made me so very MAD what she did though!

About 2 days after the first day of class, I noticed the thing on my throat bothering the Heck out of me! It was driving me UP THE WALL! I could literally FEEL it at the back of my throat! ARGHH!!! I made an emergency appointment with Dr. Sinard at the ENT clinic at the University of Texas Southwestern Medical Center at the Aston Center and he took off the "thing" which he just thought was a mucous "cyst". After biopsy, he called me and we found out it was a "Neurofibroma". I have since looked it up on the internet and talked to dr. Sinard about it and my genetic Doctor about it and they have called the genetic specialist and I apparently have "Neurofibromatosis Type II" but that is not known for sure. I know it in my heart though. I have other symptoms as well. And other "neurofibromas" throughout my body!

I have had a lot of PAIN with this throat neurofibroma and it is costing me my grade in Ear Training. I have to sing a little bit. I had to sing this past Thursday and was off key a LOT! It made me so haorse THAT I AM WHISPERING NOW AND DOING SIGN LANGUAGE TO TRY AND TEACH MY FAMILY,AGAIN! THANK GOD THAT KRIS KNOWS A LITTLE OF SIGN LANGUAGE!
I did not think she knew any! My grade is an 80.81 and that is with making two fifty's on a test! (Bad dictation-not my bast subject!) I eat ice cream and mushy burritos and hot pockets these days.

I now have three nose bleeds at most a week with my throat being so sore. No more singing for me! My ears are popping and feel full a lot of the time. I also have a bump at the top of my gums now and it makes my mouth very sore. What is going on with me?

I know this is a part of the Cowden's Syndrome that I have and probably the Neurofibromatosis also, and I should expect it, but I do not. I still get scared. I have a blood bump on top of my skull too. Probably got it from when I hit my head, ya think? It was huge, but I picked at it and now it is smaller! See the doc October 27th about that one in Bedford, about 30 minutes from here.

My faith shall keep me going, as I have written in my poems. I am going back to school for music. However, the more I think about it, I need to be a doctor. Will take Human Anatomy & Physiology next semester to see how I do!

Love ya!