(If you know what this is.. Or know someone who does. Please Comment/Add Me So I Have Someone To "Bond" with over these hurdles we both understand)
****Never judge a book by it's cover****
Honestly, you could miss meeting an ahmayzing person.
So i'm sure you're all wondering what the hell this is. What the hell it's about. And what the hells been going on with me recently.
Since 18months of age. I was diagnosed with NF(Neurofibromatosis)1. There are two type. Type two is far less common, and far more severe. Although they're both severe.
I didn't talk in complete sentances till I was about 4 because of this. I started walking at the normal age.
I had a speech problem till I was about 16yrs old. And now I speak 1 language other then English (try growing up in a bilingual home with a speech impediment) VERY difficult
I then started "ocupational therapy" and it helped. Somewhat I guess you could say. I was fortunate enough not to have to do what some of us had been diagnosed with NF. Have had to deal with. Some have to go through Physical Therapy just to fight for thier chance at what you call a "normal life"I still in a sense if you ever talk to me. See me stumbling through words. I still have a learning disability. I had to fight through my school years JUST to graduate. I'm fighting for my Pre-Med. They at least are making sure i understand 100%
Over time, I went through the ups and downs of a normal kid, teenager,young adult, and now..
Having NF, you develop what others call "Birth marks" what we're diagnosed is called "Cafe au-lait" spots. If you had 5 or more at birth and beyond. You went to get checked up on by a specialist.
As for the specialist. I went 4 times a year. Pulled out of school on no complete notice. Till about my Sophmore year. And I wasnt seeing a Speech Therapist. And Occupational Therapist. And A Counsler anymore.. (needless to say...12year gap... NOT so good between visits i'll explain later) At these not so lovely 3hr+ visits. They did EVERYTHING you could think up. Yea needless to say Tracing shapes and drawing it 20 times. The alphabet 20 times. Saying the alphabet out loud and colors and shapes. Those weird "what do you see here Ingrid" things (forgot the technical name)Rorshock? Anyways on with the blog
At the age of 7 I was diagnosed with Asthma, and as a precaution. I went to get an xray thus leading to one of my 100 MRIs as a kid. They found my first tumor. Ewwww NOT so lucky.
When you have NF.. Neuro (meaning the spine brain and nerves) yay for pre med!Your tumors (yes tumorS with an S) can grow where ever in the damn hell they please. If you're one of the "un-lucky" few they grow on your skin. Thus creating skittle size + tumors under your skin (skittles are just a size referance)Of if you're like me.. And your "outside is prettier then your inside" as I say. Your entire body is covered with them. Growin in places like ur lungs your tumors growing tumors. You spine, your ribs ur where ever they feel like it.
In my case, all in my pelvis on the nerves to my legs. Which is why I have lower back pain. My neurosurgeon. Dosn't want to take the chance let alone the hours. And slicing me from head to toe. Removing them. With the 50% chance of them growing back. And the 5% (although small)chance of them growing back malignent.
So needless to say. If you're female with this its a 50% chance of passing it on to child. Meet a male and he has it 100% chance..
You get this either through your parents. Or in my case genetic mutation.
On to my whole out look. I've come to realize that THIS could be what kills me. Avg women live till their 80 (men 60 from what i remember) I'm at the whole point in my life. That I am at decsion. NOT to have children because of this. I can adopt and NOT worry about passing this on to them. Not putting them through what i had to fight for. What my parents had to fight for just so their daughter. Could have a normal life. A "normal" whatever. When the two after her where "perfect dna offsping" Nothing wrong with them.
I could lose my vision later in life. I could lose my hearing and go deaf later in life. Because of all the tumors in my hips. I could become paralyzed later in life.
Time will tell.. But till then I have to take 1 day at a time. And hope each day everything I wanted it to be.
So i've learned up till now. That i'm the one who needs to grab life by the horns. And Live my life to the fullest.
