A little introduction (just registered)

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#1
Hello everyone, I am 21 years old aand I don’t really know where to start or what to say. I guess i will start with that i have a incurable genetic disease called osteogenesis imperfecta (also known as brittle bone disease) . I guess in my first post i ll explain about my disease since its a huge part of me idk if thats ok. So i ll start as you probably already figured it out it’s main symptoms are really fragile bones, short height and of course weakened musculature due to bone breaks. There are a 4 types of this disease i am type 1 ( the mildest) and i have around 30 bone breaks in my lifetime and i can walk. The other types are either fatal ot wheelchair bound with up to 100+ bone breaks even a sneeze can cause it in the more severe types. I am 140cm tall or 4 feet 10-11 inches. Ive had many many leg surgeries and i have metal rods in my legs from top to bottom to support my bones and prevent them from bending. Surprisingly bodybuilding used to be my hobby my passion i used to do it since the age of 15 and eventho there hasn’t been even a year without surgery or bone breaks I always went back in the gym until last year where i broke my femur (thigh) bone two times in one year and that made me give up on it cuz i got tired of breaking bones and starting from zero. Also the older i get the more fragile im gonna become and the more complications im gonna get like scoliosis osteoporosis arthritis etc.. i cant run never could.. i walk with a limp cuz my left leg is 1-1,5 inch shorter than my right. I think that’s enough about my disease for now if u have any questions please do ask. About me.. I never kissed a girl, never had a girlfriend thats not virtual long distance rship its just i guess all this+ the fact that i look like im 14 due to short height and young face and limping doesn’t help ( thats how I developed my passion for bodybuilding. I started bcuz I hated people calling me small even without hurtful intentions or confusing me with a kid all the time). I have friends, loving family etc etc yet i feel so so sad all the time and it wasn’t like that when i was 14-15.. when i was14-15 i never thought about my disease or anything i kinda ignored it all and played video games all day but the older i got the more depressed i got. Im at a point where i hate myself i hate my body and I don’t feel worthy to be with someone . For example when i talk to a girl i can’t imagine her liking me the way i am. I think that’s enough about me for now. Sorry for the long post and my English isn’t my native language so sorry if there are mistakes.
 
#2
Sorry to hear that you are going through this Oxy.

There may be some suggestions I could make, but that might not be what you want or need most right now.

It's got to be really frustrating to have this disease.
 

Alwayswrong

Well-Known Member
#3
@Oxy, man!!! I had a fracture once. Terrible pain!!!!!! And you got over so many!!!!!!!!
Im at a point where i hate myself i hate my body and I don’t feel worthy to be with someone . For example when i talk to a girl i can’t imagine her liking me the way i am.
Oxy, I'm glad to say you're WRONG. And I can show you how wrong you are. Just watch this video. Pastor vujcic has NO LIMBS at all, got married to a splendid lady and has 2 kids.


Hope you can see it.
Welcome!
 
#4
Hey , thank you for the kind replies and the support. And ye i know Pastor Vujcic, but I guess I don’t have his mindset and I’m not as strong as him.
 

Alwayswrong

Well-Known Member
#5
ARE YOU SURE???!!! We barely tolerate one fracture as a tragedy... and you...!!! Think twice! I can SEE you are!!!
Besides, what I wanted to show you is that finding love is not a matter of bodies, but of souls.
You're a WARRIOR, and that's something very attractive to women.
 
#6
ARE YOU SURE???!!! We barely tolerate one fracture as a tragedy... and you...!!! Think twice! I can SEE you are!!!
Besides, what I wanted to show you is that finding love is not a matter of bodies, but of souls.
You're a WARRIOR, and that's something very attractive to women.
Thank you mate, I appreciate it but i actually dont share with people in real life about my illness and stuff. Only rly good friends and family knows. And finding some1 who loves u for who you truly are is really rare these days btw.
 

Alwayswrong

Well-Known Member
#7
finding some1 who loves u for who you truly are is really rare these days btw.
Yes, it is. For EVERYBODY. Many people have become addicted to shallow relationships, either because they feel they have to protect themselves or because they just are that way.
 

Alwayswrong

Well-Known Member
#9
I'm really sorry. Life has been harsh on you so far. But that doesn't mean it will go on like this forever.
I admire you very much. We all get so tired every now and then that we want to kick the bucket.
 
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Walker

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#10
Hey there, bud. Have you joined support groups online or in person for OI? I know there are some, I've been part of groups for my own genetic condition that's closely related to there are people who have OI that come and go from my groups as well. Maybe those folks would be able to lend you some additional support about living your life more fully with your condition rather than on the sidelines -- or they may make you more depressed. Those groups can sometimes make you feel more crappy, that's what happened with me, actually. They were **always** bitching and I couldn't take it. I guess that's what it was there for but I couldn't handle it.

Anyway, let's cast aside your OI and just cite the other things you have here that you're upset about not faring well with girls and that you're quiet and short and these other things. Have you read the things the other intro posts say around here? Yours comprise a solid tenth of them. Guys showing up around your age saying how they've never had a girlfriend (mostly ages 15-30) and are worried they're going to keep striking out forever. But a common thing with many of those posts (which I don't necessarily get from yours in the combo one-two punch) is lack of confidence, which you may have but also not leaving the house. You don't sound like you're totally shut in from the world so hopefully you're still getting out and doing things and seeing people. You said you were going to the gym but stopped because you were breaking bones too often and that wasn't working out for you. I can see how that's a little off putting lol Kind of a lot of recovery time for a day at the gym, man. But what about not weight lifting, what about just conditioning there at the gym? Keeping fit and keeping your muscles in shape, I do know that's still important for you in the long run with your condition so maybe not going at all isn't the way to go AND you have the perk of possibly meeting someone who is also into fitness there.

And if that's no longer a thing for you then do something else you just into in order to meet people -go back to school, take some classes, learn Spanish or sign language. Start taking a yoga class or stretching. Chess or bridge. Start going to church if that's your thing. Check out the local coffee place and see if there are events in your area that look cool to go to. Are there bands coming to your area? Ask someone to go with you. Do you have a dog? Take it to the dog park. Take up frisbee, people will play with you. Start playing a (gentle!) sport. If you find interests and just do your thing then people will wander along and you'll strike up things to do with them. Don't worry about girls, specifically. They'll be there too - and eventually the two of you will collide. Your condition (or height, or lack or experience, etc) don't exclude you from having all the good things in life. Trust me, your time will come.
 
#11
I'm really sorry. Life has been harsh on you so far. But that doesn't mean it will go on like this forever.
I admire you very much. We all get so tired every now and then that we want to kick the bucket.
Yep mate thank you for the kind words but it probably will.. things won’t get better I won’t stop being fragile and on top of that parents treat me like im 15.. im 22 almost and i cant go outside whenever i want and come back whenever i want and stuff cuz parents dont let me go out a lot especially after 8-9 pm cuz they r scared i ll break smth and im sick of that too. Kids that are twice my age have more freedom of going out.. they don’t let me go out of town with friends and stuff. I once went out after a fight about that where they said I don’t care if I break something thats why I wanna go out that much etc and I went out anyways then broke my leg when i came home and they thought im lying and I broke it while i was outside..
 
#12
Hey there, bud. Have you joined support groups online or in person for OI? I know there are some, I've been part of groups for my own genetic condition that's closely related to there are people who have OI that come and go from my groups as well. Maybe those folks would be able to lend you some additional support about living your life more fully with your condition rather than on the sidelines -- or they may make you more depressed. Those groups can sometimes make you feel more crappy, that's what happened with me, actually. They were **always** bitching and I couldn't take it. I guess that's what it was there for but I couldn't handle it.

Anyway, let's cast aside your OI and just cite the other things you have here that you're upset about not faring well with girls and that you're quiet and short and these other things. Have you read the things the other intro posts say around here? Yours comprise a solid tenth of them. Guys showing up around your age saying how they've never had a girlfriend (mostly ages 15-30) and are worried they're going to keep striking out forever. But a common thing with many of those posts (which I don't necessarily get from yours in the combo one-two punch) is lack of confidence, which you may have but also not leaving the house. You don't sound like you're totally shut in from the world so hopefully you're still getting out and doing things and seeing people. You said you were going to the gym but stopped because you were breaking bones too often and that wasn't working out for you. I can see how that's a little off putting lol Kind of a lot of recovery time for a day at the gym, man. But what about not weight lifting, what about just conditioning there at the gym? Keeping fit and keeping your muscles in shape, I do know that's still important for you in the long run with your condition so maybe not going at all isn't the way to go AND you have the perk of possibly meeting someone who is also into fitness there.

And if that's no longer a thing for you then do something else you just into in order to meet people -go back to school, take some classes, learn Spanish or sign language. Start taking a yoga class or stretching. Chess or bridge. Start going to church if that's your thing. Check out the local coffee place and see if there are events in your area that look cool to go to. Are there bands coming to your area? Ask someone to go with you. Do you have a dog? Take it to the dog park. Take up frisbee, people will play with you. Start playing a (gentle!) sport. If you find interests and just do your thing then people will wander along and you'll strike up things to do with them. Don't worry about girls, specifically. They'll be there too - and eventually the two of you will collide. Your condition (or height, or lack or experience, etc) don't exclude you from having all the good things in life. Trust me, your time will come.
Hey i have never been in an OI support group but its a rly rare disease so I doubt there are many active ones its 1 in 20,000 people. As gym goes I never broke in the gym , I break usually randomly by falling tripping and so on the difference is that for me 99% of the time a fall to the ground means a break. So i got tired of starting gym from 0 everytime. I was rly good at it i was benching 90kg at body weight of 45kg. But in the end lets say i did start again sooner or later i will break again and it ll all go away ..and as far as going out i used to love going out with friends but parents limit my going outs eventho im 21.
 

Walker

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#13
There are groups, like I say, I've also got a rare condition and I see people with OI coming in there often. Check Facebook or other places online if you think it would do you any good.

As for going out - why are your parents limiting going out? Because they're over protective? They don't like your friends? You don't drive? You're 21 years old, you could be moved out on your own at this point so at some point you have to take the stance that they can have a say in things but that you're still able to do what you want in the world at the same time, you know?
I've got a 21 year old and we're having this same thing going on right now actually. His mother babies the hell out of him and wants to keep him home all the time, limit where he can drive, how long he can stay out, etc and I'm like "let the freaking kid go out, he can move out of the house if he wants to let him go for god sake". The struggle is real, man. I feel you.
 
#14
There are groups, like I say, I've also got a rare condition and I see people with OI coming in there often. Check Facebook or other places online if you think it would do you any good.

As for going out - why are your parents limiting going out? Because they're over protective? They don't like your friends? You don't drive? You're 21 years old, you could be moved out on your own at this point so at some point you have to take the stance that they can have a say in things but that you're still able to do what you want in the world at the same time, you know?
I've got a 21 year old and we're having this same thing going on right now actually. His mother babies the hell out of him and wants to keep him home all the time, limit where he can drive, how long he can stay out, etc and I'm like "let the freaking kid go out, he can move out of the house if he wants to let him go for god sake". The struggle is real, man. I feel you.
I ll snoop around for some groups man thanks! As for going outs I think they limit me cuz they scared i dont know.. I fought with them many times and when i go out against their will and they say I don’t care if smth happens i feel unease wheen i go out cuz what if something happens and i break a bone and I went out against parents will. But its rly bugging me because all my friends go out whenever they want and come home whenever they want. I have an older brother and he had way way more freedom than me as well. And I don’t have drivers license my parents aren’t really fond of me driving so theu try to stall it as much as possible. Cuz if i can drive i ll be able to go anywhere i want and they wont like that.
 

Walker

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#15
Yeah, I hear you. It's a weird age sometimes right around where you are. You might have to push a little to get more freedom -- but without acting like a jerk about it. Just say you are going to go out with your friends. I doubt they're going to tell you "no". Then tell them who you're going with and when you'll be home because you live with them and respect them. Be a responsible guy and they'll trust you. Having OI doesn't preclude you from having a *life*, it just means you have to be ultra careful. Might you get hurt out there? Yeah, it's a real possibility. So your friends should know if something happens to call mom or dad right away but you do need some freedom to actually live. You might feel happier in the long run too, eh. Good luck you to, friend.
 

DrownedFishOnFire

Back into the wild where I belong. Out of your way
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#16
Sorry for the belated response @Oxy

When you stated you had OI I immediately thought of Brick. The actor who plays Brick in the middle. He actually has OI as well. So pretty much anyone who follows the middle tv show that bothered to listen to Atticus' interviews would know about his condition. He is really bringing awareness of OI to mainstream audience in the states.

http://www.transfermaster.com/blog/view-post/Meet-Atticus-Shaffer-Actor-with-Osteogenesis-Imperfecta

Take Care and I hope you are doing better now with your parents
 
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