Neurofibromatosis Support Group
Neurofibromatosis is usually noncancerous. There are three types of this condition. Type 1 usually appears in childhood, while Types 2 and 3 appear in early adulthood. Type 1 can cause bone deformities, learning disabilities, and high blood pressure. Type 2 can cause hearing loss, vision loss, and difficulty with balance. Type 3 can cause chronic pain throughout the body....
Just like the title i jus need to get some things off my chest. I know this is a little long but please bare with me. I dont really know to who talk to about this thats why i'm here. I'm a 25yr old guy and i have NF1 and i have two main (visible) growth spots one on my eyelid and one on my neck both are about 2 inches wide. Sometimes i feel like there's no one to talk to about my NF. No one in my family has it nor does anyone know about any history about it. So if i were to tell them about my feelings how would they really know how i feel. What kind of advice can they even give me if they don't now how its like to live and walk everyday with NF.
So right now i'm at a point in my life where i don't know weather or not i'm going to live/die alone. i cant even be in a stable relationship with anyone. I'm not sure if its me they don't like or if its the tumors. It's not like I'm a bad person or anything. I'm not trying to boast or anything but I treat everyone with respect,give to charities pray for other people and help others that are in need. Basically the type to help others before he helps them self. I do have a very supportive family but in know were all going to grow up one day and eventually live apart and I'm going to end up alone. If theres even a chance that there is someone out there for me, what if they want kids? I mean, i'd love to have kids one day but i don't want another person to go through what i went through growing up. Sometimes i tell myself "if i cant even accept my NF how can i expect my significant other ( thats if there will ever be one) to accept it?" I still find it hard to just accept the NF even though i've lived with it for almost 20 years now. All the random questions from strangers regarding my appearance are really getting old. i've tried everything from joking about it to telling the truth to even cursing out a person. Sometimes i think about going to a shrink but what the hell would they know how its like to have NF? there are times where i feel like offing myself but the thoughts burn as quick as they come. i thought it would get easier as i grow up but i am just finding it harder every day. Sometimes i question my family's support when they ask me if i am willing to have surgery. are they tired of seeing my tumors? are they embarrassed to be around me? or are they just concerned? I want to be closer to them but i don't know my i keep building a wall when it comes to the subject of NF. Sometimes i try to convince my self that i was a horrible person in my past life and i deserve to have NF or does god hate me so he gives me NF. But then i realize that he has blessed me with so much in life like my overall heath i know some with NF aren't as fortunate me, a supportive family and friends, and a good job. I just wish i can talk to someone who understands. Everyday i feel alone and i don't know why i keep putting myself down. I am really terrified about the future. I just wish i had someone to physically talk to about this.
If you read this all the way to the end i just want to say "Thank You Soooo Much!" I just needed to rant about my feelings rather than drown myself in alcohol. I always accept anyones words of wisdom. Thank You once again and God Bless
Larry
So right now i'm at a point in my life where i don't know weather or not i'm going to live/die alone. i cant even be in a stable relationship with anyone. I'm not sure if its me they don't like or if its the tumors. It's not like I'm a bad person or anything. I'm not trying to boast or anything but I treat everyone with respect,give to charities pray for other people and help others that are in need. Basically the type to help others before he helps them self. I do have a very supportive family but in know were all going to grow up one day and eventually live apart and I'm going to end up alone. If theres even a chance that there is someone out there for me, what if they want kids? I mean, i'd love to have kids one day but i don't want another person to go through what i went through growing up. Sometimes i tell myself "if i cant even accept my NF how can i expect my significant other ( thats if there will ever be one) to accept it?" I still find it hard to just accept the NF even though i've lived with it for almost 20 years now. All the random questions from strangers regarding my appearance are really getting old. i've tried everything from joking about it to telling the truth to even cursing out a person. Sometimes i think about going to a shrink but what the hell would they know how its like to have NF? there are times where i feel like offing myself but the thoughts burn as quick as they come. i thought it would get easier as i grow up but i am just finding it harder every day. Sometimes i question my family's support when they ask me if i am willing to have surgery. are they tired of seeing my tumors? are they embarrassed to be around me? or are they just concerned? I want to be closer to them but i don't know my i keep building a wall when it comes to the subject of NF. Sometimes i try to convince my self that i was a horrible person in my past life and i deserve to have NF or does god hate me so he gives me NF. But then i realize that he has blessed me with so much in life like my overall heath i know some with NF aren't as fortunate me, a supportive family and friends, and a good job. I just wish i can talk to someone who understands. Everyday i feel alone and i don't know why i keep putting myself down. I am really terrified about the future. I just wish i had someone to physically talk to about this.
If you read this all the way to the end i just want to say "Thank You Soooo Much!" I just needed to rant about my feelings rather than drown myself in alcohol. I always accept anyones words of wisdom. Thank You once again and God Bless
Larry
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
I'm Ramona, and when I read your post I just had to respond. I didn't even have an account on this website until I saw your post. I desperately want you to know that you are not alone in how you feel. So much of what you wrote resonated with how I often feel.
I am 20 years old, and I also have never had anyone to talk to about NF. Most of the medical things I know about it I researched on my own. My father had NF and died shortly after I was born from a tumor that formed in his brain. I have a lump on the back of my head (on my scalp) which I manage to cover with my hair, and I also have a small one in ear and a few smaller ones on my back and arm. Thankfully all of them have stopped growing. I have a big birthmark in the center of my forehead, and yes, the questions get annoying (especially when strangers ask me if I just came from mass because my birthmark is the shape of a thumbprint), but I've learned to smile politely and come up with some clever explanation.
There are many times when I have cried out to God and asked Him why He allowed me to be born this way. I've even wondered why I was born at all. Dying at one point seemed like an act of mercy if death were to be so fortunate to find me. I feel sad sometimes, and wonder if there is anyone out there who will ever love me.
I can't tell you how many times I've cried, begged, and screamed prayers for God to answer me or heal me. But God has a way of answering us that we don't quite understand sometimes. Sometimes we have to go through things in order to be able to help someone else. How can we know to comfort others if we have never needed comfort? We all have cross to bear, and, as the Bible says, "God is faithful, and will not suffer us to be tempted above that which we are able; but will with the temptation also make a way for us to escape that we may be able to bear it". You may feel tempted to be sad or think negatively about yourself, as I am at times. But keep fighting and find something in life worth striving for every day.
You sound like a beautiful person, and I am so sorry that you have had to go through what you have gone through. I completely understand your pain and frustration. Its tough not to feel some form of anxiety, especially when we live in a society that is so caught up in appearances. But God always sends someone your way that understands, and you can talk to me whenever you need someone to talk to. I have never known or had a friend who has NF. It'd be nice to have, like you said, a physical person to lean on. Trusting God is wonderful, but sometimes we need people too.
Sorry for being so long winded...I don't even know if the things I said were "helpful". But stay strong Larry. Believe me, there is someone out there who will love you just they way you are. My mother loved my dad, and he had a large growth that covered his eye and made his eyelid sag. He had small lumps all over his body, and yet my mom loved and kissed every one of his growths. He even cheated on her briefly at one point, but she forgave him, never left or divorced him, loved him, and took care of him until the day he died in our home. She said after a while didn't even notice his eye, and loved him despite of anything he found wrong with himself. The same will happen for you, I know it.
God Bless,
Ramona
Don't give up on life and love.