I Have Neufribromatosis

hI i WASENT GONNA WRITE THIS BECAUSE I AM TIRED OF BEING MADE FUN OF, BEING JUDGED YOU NAME IT IT WAS SAID. i HAVE NOONE IN MY LIFE.ALL I DO IS CRY I HAVE  7 SISTERS AND 3 BROTHERS AND NOT ONE OF THEM HAVE IT1 IT IS A VERY PAINFUL DESIESE I HAD AT LEAST 50 OPERATIONS JUST TO REMOVE THE ONES THAT GROW SO BIG THAT THEY HURT.MY ILLNESS IS SOMETHING I WOULD'NT WISH ON ANYONE.i am married and have a 17 year OLD DAUGHER WHO HAS IT A LITTLE..THERE IS NO WAY I CAN BE THE WIFE AND MOTHER I CAN BE.I NEED OR SHOULD BE...I FIND THE TASK IS TOO GREAT.I FEEL THAT IN MY LIFE I AM GETTING HELL. I FIND MYSELF CLINGING TOO LIFE IN THE HOPES THAT SOMEDAY,SOMEWHERE MY LIFE WILL CHANGE. ITS SO HARD BECAUSE I RESIGNED MYSELF TO A LIVING HELL FOR A VERY LONG TIME AND I THINK AND KNOW THAT IT WILL NEVER CHANGE.THATS THE HND I WAS DEALT. I DONT GO OUT MUCH BECAUSE OF THE PAIN THAT GRASPS MY HEART AND BRINGS ON A SICK FEELINGS AS MY MIND RECALLS THE THOUGHTLESSELY OF  CRUEL WORDS SAID BY OTHERS ABOUT MY LOOKS. THE NF. ABOUT ME. ITS SO EASY TO IMAGINE THE TEARS THAT WET MY FACE MY FITS THAT POUNDED MY BED IN FRUSTRATION.IM SO TIRED OF THE RELIZATION THAT I AM NOT PRETTY AND NEVER WILL BE. I FEEL LIKE A STORYBOOK THAT I AM A QUEEN WITHOUT A THRONE. THEN CAME THE MOST HUMILLATING INSULT OF ALL... GOD WOULD NEVER ALLOW ME TOO BE BEAUTIFUL. WHAT GOD HAD IN STORE FOR ME IN CHILDHOOD WAS SO SIGNIFICANTLY PAINFUL I KNOW DEEP DOWN MY SCARES BECOME IMPRINTS FOR THE expressionS OF THE GRACE IF I WOULD TAKE GOD AT HIS WORD THAT CANNOT BE BROKEN AND THAT WILL NEVER BE CHANGEDMY LIFE FEELS SO MUCH CONFUSION. THEN COMES MY EXCRUCIATING PAIN. MY SCREAMS GRADUALLY SUBSIDE TO SOBS....IM JUST A PERSON LONGING FOR THE SECRUITY OF MY FAMILY. BELIEVE ME THEY SEE HOW MUCH PAIN I GO THROUGH. THEY KNOW THE KNOWLEDGE HEATED UP INSIDE ME UNTIL MY FEARS AND FRUSTRATIONS ARE READY TO ERRUPT LIKE A VOLCANO. MAYBE RELIEF WOULD COME AS I LAY COLLASPED ON MY BED. IVE BEEN TRYING TO TRUST MY FAMILY MORE AND MORE. FIGHTING FOR MY LIFE AT TIMES. IM TELLING YOU RIGHT KNOW THAT I WOULD PAY A HORRIBLE PRICE TO GET WELL AND NOT HAVE TO HAVE PAIN AND LIVE A HAPPY LIFE ONCE AND FOR ALL. WELL THAT IS HY I HATE THE WAY I LOOK SO IF I WERE YOU PEOPLE THAT WROTE IN PLEASE LOOK IN THE MIRROR YOU ALL MUST BE BEAUTIFUL...PLEASE COMMENT IM SO SAD AND LONELY...ANTO815

Anto815 Anto815
46-50, F
17 Responses Jul 17, 2010

Hey don't be sad! Listen, this life on Earth is only a second when compared to the eternal life Jesus can give you! There is no crying or hardship in heaven. Just accept Jesus as a sacrifice for your sins and build a relationship with God.

Hi I also have Nf1, I am 47 and I am tired of people looking at me with a disgusted look on their face and the comments they make. I don't want to go out in public anymore but that's impossible. My own brother, his wife and my nephews are embarrassed of me. I understand how you feel.

I am so sorry it has taken so long to reply back but I was in the hospital. I am from a large family of 10 and I am the only one who has it and It sucks..I would love to be friends with u please friend me and message me anytime hope to hear from u I will always be here if u need someone to talk with..Take care

Hi, Again. I'm a guy. Like i would have to say that, once you read my words.I have searched for true friends, my whole life. I don't know if they truley exist, Just like i don't know if god exist; or belive in Humanity. I do know, when you least expect it, someone surprises you, with an action of great charecter that inspier's you to keep going. For the most part, you have to find your hope each day yourself. We each are giving a plate in life. I belive my life sucks, i'm lonley, ect. But it could be worse., Some where somebody got worse. Or maybe, by helping another, i find help for myself.. I hope this encourages you. If not, look at what you do have. You have child, you have a husband, so you can't be that ugly. You have family. Some , don't have that. Some would say, you are rich

Thank you for reading and for your kind words. I think you are a really nice guy and if we are not friends i would love to be your friend if u could friend me. You could message me anytime and if u see me on chat i sure would like to chat with you. Hope to hear from you..

Thanks again I want so much to be friends so if were not please friend me and message me so we can get to know eachother. I need a friend who understands what i am going through and it would be nice if that person was you. Have a good night.

i have that too!! it sucks im so scared of changing in the locker room because of my spots im glad i found somebody that has it two

I was the same way I still am that way at the stores wheen i have to try on something. Please becom friends with me and mssage me anytime loooking to heear from you.

so sorry

Thanks that really hlped..

I agree with what kitten has said and also add you have one friend here if you want? I don't judge b y looks and will always try to help.

I would like vryh much to be your frind so please friend me and message me anytime so we can talk about it. Thanks again

To my Dear friend, Let me start by saying i am sorry that it has taken so long in getting back to you. Thankyou so much for taking the time out in reading my story it really means alot to me. Thanks also for your kind words. I would love to be your friend so if we are not would you do it for me i have a problem on my end. Thanks again Take Care and have a nice day..

To my friend Bellesolell, Just wanted to thankyou for taking the time out in reading my storu that i have kepted inside for so long, I would love to be your friend so if you want could you please do it im having a hard time. Thanks and have a good night

To my dear friend, First if we are not friends could you make it happen i have a problem. I thought i was alone. I would really like to get to know you . Thankyou for your kind words. It is hard ive been living with it since i was 7 and i am 48 and it has gotten worse much worse. I hope yours aren't as bad as mine. I will pray for you. Thankyou for your kind words it was so touching the tears kept falling not of sadness but that someone other than me have them. Do you live far? I live in Longisland. I hope we can be friends and i hope you have a wonderful day,,,

Im sorry to hear that you are so troubled by having NF. I have it myself and i understand that people make of others that appear to be different on the outside. I want to remind you of the fact that you have a beautiful 17 year old daughter that loves you, a husband that loves you, A god that knew you when you were in your mothers womb. "Beauty" is not on the outside, it comes from what is inside of you. God works in "interruptions" in our lives. At times we pray to God to help to bring us comfort but it seems like they are getting no where. But he is with you, always, everywhere you go, he knows what you are thinking even before you say it. Even though you may not feel beautiful you ARE beautiful in God's and your family's eyes. This will pass, <br />
<br />
Jeremiah 29:11-14<br />
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11 For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. 12 Then you will call on me and come and pray to me, and I will listen to you. 13 You will seek me and find me when you seek me with all your heart. 14 I will be found by you,” declares the LORD, <br />
<br />
also watch this <br />
http://www.youtube.com/watch?v=M6wJl37N9C0<br />
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i hope this helped- much love.

Thanks so much for the kind words..I am sorry it has taken so long in writing back I didn't think people would read any of my old stories but i guess they do so i will try to check them daily.

Dear Destiney, Thank you for always reading my stories and for your kind words. They mean more to me that words can say. Im sorry its talikg so long in writting back I'll try to get a handle on it. Take Care

THANKYOU ALL!!! YOU DON'T KNOW HOW EACH OF YOU TOUCHED MY HEART IN DIFFERENT WAYS. I WANT TO THANK YOU FROM THE BOTTOM OF MY HEART. Im SORRY IT HAS TAKING ME SO LONG TO REPLY THAKS AGAIN..

hey i have it two it hurts and i get made fun of sometimes but my friends help me through it i am so glad that i found out someone else has it two

I am sorry it has taken so long in writing back I would love to be friends with you so please friend me so we may talk about it message me too. Hugs to you...

Just by reading this I can tell that you are a strong and beautifull person. To have to deal with the pain and the judgement of others has caused you to experience things in life that not alot of people have. This fact alone seperates you from the vain light weights in life. You are a survivor and should grab ahold of the strength deep inside you and channel it in positive directions for your life.

I wish for your happiness. Hugs...>0<

You know what, we ALL get judged because that's basically what most people do day in and day out. Not that everybody's doing it on purpose but more like they do it before they even realize what they're doing. I'll bet many of these people walk away kicking themselves for being so callus or outright stupid. I know that there have been times that I can't believe what I just said... and times that I'm hating the world and passed that hate on to someone else just because I could. I'm ashamed to say that I HAVE done this before... my point here is that people are treating other people real ugly every day and as crazy as this sounds I doubt seriously that you are being singled out. The folks who are walking around with hate and anger in their hearts are doleing it out everywhere they go -- I assure you. They can come up with something hurtful and mean for everybody. What I love about the concept of writing stories is that we humans get to peep into another's heart and mind and that is truly where what we 'look like' really shows. Am I wrong?<br />
I am so sorry for your pain both physically and knives to the heart. Maybe your story will get through to some of us.

Whenever I feel hopeless, I remember the things and people I love. I take solace in being grateful for what I have. I know it's difficult to feel grateful when life has thrown so much pain your way, but I'd nothing else, you have children and you must be strong for them. don't despair- you possess hidden reserves of strength that have yet to be tapped.

I am so sorry for your pain. I don't understand it because I am not like you. However, I feel sympathy and empathy for you. I pray doctors will help you and find a cure.<br />
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People are not tolerant beings, nor is it natural for people to accept others who are dissimilar to themselves. I can not imagine the hurts caused by others. <br />
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I pray you will find a wonderful friend.