Having Faith In Life Always

I live in Cleveland Ohio U.S.A. and I am 62 years old and own a small Boutique. I never knew about NF until about 18 years ago. I got NF from what they call a mutation of a gene. There is no one in my family of ten that has NF. I suffered with pain in my face for a very long time but no one was able to ever find out what was wrong until I went to a dentist that was a specialist to ask about the tumors in my face...and the rest was history.
There are many more thousands of people who suffer more than I do, but living with pain is not easy for us all... I truly believe that God is with us all on this adventure of life. And yes, with the Love of Family and friends we can accomplish all. I met Jai a few years ago on the NF website and she has truly been a Blessing as a friend. She is so sweet and understanding and so strong for all that she has been through in her life. Sometimes someone crosses are path in life that really touches our heart and our lives.... Jai is one of those people.
I have met many people in my life and have been fortunate... but only a few can touch your heart and Jai and Anthony are one of those few. Remember life is Great and Worth Living We are here to Love and be Good to one another. Always, Ilona

Don't Call Me Disabled

Don’t call me disabled, that is not really true.
How would you like it, if that is what I call you?
Don’t tell me I am not normal it hurts me thru and thru.
What is normal for me is not normal for you.
Just because I am ill and I am not like you.
Don’t tell me what I can’t do.

I may not be a Cadillac or a Rolls Royce
However my illness was not my choice.
For everything you tell me, that I can’t do
There is something else I CAN show you.

First you say, that I can’t walk or run.
However, I CAN still have lots of fun.
I might be in awful lot of pain.
Give me a moment I will smile again.

I talk and visit more friends then you each day.
I visit with my computer it is just another way.
For all the things you say I can’t do.
I might just agree “if” I were you.

I am just thankful that I am me!
God will help me “Be all I can be.”
You see everyone is special, in their own way.
It’s just different the way we live each day.

I might need time to adjust.
I know God is where I place my trust.
Next time you tell me, I can’t work anymore.
Oh yes I CAN, Pain is quite a chore.

Now you say, I can’t socialize.
I am here to tell you, that’s all just a lie.
Yes, I might struggle more then you.
But God gave me knowledge on how to DO.
He gives me strength to learn each day.
How to do things in a different way.

Even tho I am sick and sometimes weak,
Everyday it’s “me” to whom he will speak.

Copyright Joynheart.

Something About ME

By Anthony

I live in the Netherlands. The doctor found out I had NF1 when i was 8 years old... I didn't have too much problems with NF through my childhood years... The lumps started when I was 17 years old. I've had many surgeries these last few years. Going to school was not easy for me, I had a hard time learning things w/having LD (learning disability) at times I felt frustrated w/not being able to do certain things... but I didn't give up just cause I have NF doesn’t mean it has me and with that I try my hardest to not let it get to me... I consider myself lucky. I have had a lot of support from family & friends and if it weren't for them I don't know where I be... I couldn't do it without them.

I work in a factory been there for 25 years I continue to keep working as long as I can... I live alone in apartment never been married don't have a girlfriend at times its not easy to be lonely. I always have my family & friends who is there for me...

My best friend Jai and I have been friends for 9+years. We call and write each other and IM. We met on the NF site years back. She is a good friend to have she understands and knows how I am feeling, she is easy to talk to and I feel so comfortable w/her. I have a hard time talking about myself but w/her I can say any thing and she knows exactly where I am coming from. I try to do the
same for her. I have a dream of meeting her one day it would make me feel better.... you never know Jai.