I am 18 and had over 400 broken bones in my life, AmA. (First Post)

This may be a stupid question but does a person with Osteogenesis Imperfecta experience the same level of pain as a person without it when breaking a bone?

Which bone breakage has been the most painful and what caused it?

Do breaks take longer than normal to heal for a person with your condition?

What are some of the biggest causes of breaks for you?

What are some of your most unexpected breaks, i.e. some activities you thought would be completely safe but turned out not to be.

There is no such thing as stupid question! :)

1. Yes and no, breaking a bone still hurts like it normally would but you get used to it and most people with OI build up a really big pain tolerance.

2. I actually think the most recent major break was one of the most painful in awhile anyway. I was laying on my stomach playing a game on my iPad and I went to sit up and barely leaned back on my legs and my femur (bone between hip and knee) snapped all the way in half, in fact it broke jaggedly up and all they way through the bone. Wish I had taken a picture of the Xray, but I didn't think about it. When it snapped it was really loud and my mom heard it too, which usually only I hear and of course feel it.

3. They can, OI is caused by a collagen deficiency which helps keep the bones together. I am on an IV every 3 months that helps with that and so being on that helps with how well my bones heal and strengthen.

4. Traumatic things, like once I was standing in a hot tub which the only place I can stand is in water and it was slippery well my feet went out from under me and I went to grab the side to catch myself with my right hand and it just pulled my arm and broke it. When I was younger there could be no cause at all but now the spontaneous ones don't happen near as often, like once every for years now, Thank God.

5. Haha good question, well as I said before one time I broke my arm spraying Lysol. Also I broke my leg from just sitting up from laying on my stomach as stated in answer 2. :)

Eesh, I cringed a bit reading the femur break. :(

Thanks for the AMA!

Sorry. :/ Sure! Thanks for reading! :D

obvious question

Have you found your bruce willis opponent yet?

No, Google has let me down lately.....-__-

" breaking a bone still hurts like it normally would but you get used to it " That sounds absolutely horrible! Something some kind of superhero would say.

Haha thank you! :D

As someone who recently broke his wrist in 6 places and lost about 70% of my movement in it this made my stomach sink. Worst experience of my life was breaking my wrist and you've had hundreds of breaks I feel like a idiot feeling sorry for myself.

Hey don't talk like that! It sucks cause you aren't used to it. It isn't your normal thing. We all feel sorry for ourselves every now and then. I am really sorry to hear bout your wrist. I will be praying it gets better soon. :D

Thanks for the informative reply! It's good to hear that your breaks don't happen as often that they used to.

Of course! :D Thank you for the questions! Thank you it definitely helps with everyday without a lot of pain! Haha

In your last answer (#5 above), I first read "Also I broke my leg from just sitting up from laying on my stomach while answering #2."

As in, I read it as you broke your leg while answering question number 2 and reported this in number 5. :)

You, sir, have my respect and admiration for being a badass.

Hahah there is a chance I wrote wrong too, if so, my bad. Haha and thank you very much! I will try not to let the badassness get to my head, but no promises. ;D

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Hahah I wish it was called that, be helluva a lot easier. O_O

That is because of the OI, I could not weight-bare on my legs to walk, also I have bowing in my arms in legs from fractures before birth. So no it's not that I am fat.....that is just a coincidence. ;D

Haha thanks! I try but sometimes being 18 and handicapped gets hard but I have amazing family and friends that help get through some of the hard stuff. :-)

Hey dude, I have OI too. I'm 27 and am currently living a fulfilling life. I'd say that I had about that many breaks when I was a kid. I don't break nearly as much and haven't had a major break in years. I found that keeping a good diet and exercise helps this. Use water aerobics as weight lifting can cause stress fractures.

Do all OI patients have brains that absorb info like sponges?

Hey! Sweet! Yeah its definitely slowed a lot now that I am older. Haha I love food to much right now!

Yes sir, I believe we do. :D

Well keep that head up. You my friend are a badass just as I am. Haters will try to bring you down from this but just look at them and say "Do you have OI, no, no you do not. I'm a badass."

Haha thank you! I will try! :D

Samuel L.Jackson, is that you?

.......How did you know? O_O

I was going to say did the kids call you Mr Glass

No most kids just stare and annoy the hell out of me. Haha I don't mind, obviously, if you ask questions or smile when you look at me, but if you just stare at me no matter what age, I will most likely make a rude comment and be an asshole right back. I understand the little kids but I don't understand the parents. haha :)

• What are your coping mechanisms?

• What do you do for fun?

Hmm, you mean physically or mentally?

I love technology and it is my passion so I am always on my iPhone, iPad, MacBook what have you. Haha also my older brother and his wife are amazing and they let come hang out with all of them and their friends. My brother always let me be friends with his friends as I have been on their level intellectually even when I was 5 to 6 years younger. And I am not bragging bout my intellect, I swear! :-)

iPhone, iPad, MacBook

An Apple a day keeps the doctor away

Win, just fuckin win! :-D

Windows?

Are we talking glass or the Operating System, cause I could go either way with this. ;-)

As far as sex goes, are there certain positions that are impossible for you such as say, cowgirl?

....ask your mom.....O_o

Edit: no but seriously, I wouldn't know. Most girls don't see past the wheelchair. :_(

First off, congrats on graduating. Since you're in the position, have you ever had any ideas on what would help you be more mobile, like, I know it sounds stupid, but a reinforced frame or something that will help you. Damn I feel stupid cause all I keep seeing is an Iron Man suit that takes the weight off of you and puts it on the suit. I don't know. But have you came up with any ideas that will help?

Haha don't feel stupid! That would be badass! I wouldn't need any help, and I could save the world! Okay maybe not the last one.... But I have been blessed with a really good power chair by Permobil and a Toyota Sienna Rampvan so I am able to go out and about. :D

Edit: Thanks I am glad I am done with High school! Haha

Not quite Ironman, but these are actually on the way: http://www.youtube.com/watch?v=twVZIwlhpKY

Badass! Although I wonder how well that works for everyday life..... :)

Did you recently meet John Cena?

Yep, kicked his ass.

Haha jk John Cena, if you're reading this, don't come kill me! I AM TO PRETTY TO DIE!!! O__O

Not a question about you breaking bones, but, you said your brother has always let you come and hang out with him and his friends. Has he ever had to break someone else's bones for teasing or picking on you?

Haha that is a very good question! My bro has always been very protective over me. If he brought a friend or girlfriend over and they didn't pay any attention to me like even say hi, you wouldn't see them again. My bro has a huge heart and he is super caring and an awesome older brother. One time he did come close to doing so, we were in a toy store when I was like 8 or so and he saw these kids laughing, talking, and kinda looking over at me. Something came over my brother and he just said "be right back" to me and my mom. He followed them until he could hear what they were saying and thankfully they weren't talking bout me at all. But if they had, my brother would have beat the living shit out of them. haha XD

Mr. Glass

No, no please, just call me Glass! XD

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No I don't thankfully! I have actually knocks on wood have never broken my hand or foot and only once broke a finger. The bones that usually break are ribs, legs, and arms. Never had a skull, spine, or pelvic fracture. And not often. The thing that breaks the most now are ribs but those aren't really a big deal. :)

knocks on wood

Whoa, careful dude. You know what might happen!

Hahaha knocks on wood colored pillow Better? O_o

So I thought to myself, hmm a pillow with a wood pattern, that'd look nice and be a good idea. Internet already made it:

http://www.zazzle.com/rustic_barn_wall_made_of_old_wooden_brown_planks_pillow-189257273705424194

Haha they stole my idea.....e_e ...bastards.

"The thing that breaks the most now are ribs but those aren't really a big deal." One of the greatest sentences I've ever read.

Haha thanks! :D

I cracked a rib once and I whimpered about it for a week. That you're so courageous in the face of stuff like this makes me tear up dude.

Sorry to hear that, I don't blame you man breathing sucks with a cracked rib! Thank you for that comment, very nice of you! :) There has been a few times writing responses I have teared up to but that was when I talked about my family and friends, not bout me personally. haha

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No because casts are heavy on them and can cause more harm then good. The one time I had a soft cast was when I fell out of a handicapped bus cause the ramp malfunctioned (lucky me) and my power chair landed right on my leg, had the bus driver not caught my chair and the nurse pulled me out then my head would have been next and I would've been a goner. That incident broke the tim-fib the bone going from your foot to your knee. Which by the way is the slowest bone in your body to heal OI or not. Haha. Pretty much, my Mom still is bothered cause it's her baby in pain but not near as bad as she used to be. Rib fractures used to be a big scare but now they are no big deal.

How long do your breaks take to heal?

Do you get breaks in the same place, or does the bone "scarring" (not really a "scar") strengthen that spot?

It is hard to be sure from your picture, but do you have blue irises sclerae? A friend of a friend had OI (don't remember which type) and I was told that this was a pretty strong indicator of the condition?

Depends on location and severity. If its minor a few weeks, if it is major then a few months. Yes I can break in the same spot but not always. When I break a bone the bone heals back with a callus around it (think like a bubble formed around the crack before healing). I don't as much but sometimes I do. Its not real noticeable though and sometimes is used as an indicator a fracture is about to happen as the sclera will get even bluer. :)

What is the weirdest thing you did that caused a broken bone?

Bungee jumping! Damn cord broke! Haha no but seriously, define weird first, we may have 2 total different definitions of weird. :)

Weird as broke your elbow while petting a kitteh, or broke your jaw when eating a burger.

Haha okay. Thankfully I have never really broken my jaw. I once fell forward sitting on the floor when I was little and didn't have good balance and hurt my jaw but I don't think it broke. Haha and I am still gonna have to stick with where I was spraying the Lysol can and it broke my arm all the way through as it is the main one sticking out in my head right now. XD

What normal mundane activities can't you do at risk of more broken bones? Also, what was the most amount of broken bones you've had at once?

Well I will never be able to walk as my bones would never hold my weight, no matter how much weighed, unless it was only like 2 pounds but that wouldn't be possible! Haha:) A few times I have broken an arm and a leg at the same time from some kind of accident or something. Not had more then 2 broken at once, at least that I can remember.

The link you provided on OI says that there are different types (levels of severity). Do you mind if I ask what type you're considered?

Well when I was born they said I had Type 2 Group B, but that was when they only had 3 types. Now I have no clue what I am as they have changed so much and I have actually gone and read all the types and not one fits me perfectly. Yes I was supposed to die before a year old but I am not as severe in some other symptoms. And besides OI, like most diseases, is not "cookie cutter" meaning if you had it doesn't mean we would have the exact same symptoms or problems arise. OI is still a mystery in a lot of aspects and they change what they say about it every year so I don't listen to a lot of that cause it changes so much and doesn't mean I will have what problem they say OI will cause next. :)

Unbreakable?

Haha uh I wish! :D

Was Bruce Willis super mad when he found out you were the villain all along?

Also, who is your favorite comedian?

Only a little, but he got over it with therapy.

Oh thats a toughy. Stand Up Comedian: Jeff Dunham

Actor: Adam Sandler.

Hey man, this is really interesting. There's a woman from my country who's a comedian/TV host/activist/writer/editor with OI. Her name's Stella Young, she edits a website about disability called called Ramp Up. Her writing got me to realise some of the stuff that people with disabilities experience daily that I would never experience, from the hilarious to the bizarre.

So my question is, what's the most annoying thing people say or do because of your being in a wheelchair or having OI? What's the funniest? What do you wish more able-bods would understand?

Hey I will have to check that out! I normally don't get to involved with a lot of Disability related things cause they try to group everyone together just cause the have the same disease. Not that thats a bad thing but to me it would be the same if you had brown hair and so they made you be in a group with all the people with brown hair and thought y'all would all have the same interests and problems, which is of course not the case.

Okay sorry for the rant, now to the question, the WORST thing people say and do because I am in a wheelchair is automatically assume that I have a mental disability cause I am in a wheelchair. I just wanna be like "bitch, just cause I can't walk doesn't mean I am mentally retarded." There is nothing wrong with having a mental disability but don't assume someone has it cause they are in a wheelchair. Cause more then likely the reason they are in the said wheelchair has NOTHING to do with their brain. So that actually leads me to the able-bods question, I want people to realize just that, just cause someone is PHYSICALLY disabled doesn't mean they're MENTALLY disabled. The funniest is when they assume I 5 cause of my short stature, which one reason I went and got a big ass tattoo on my arm as soon as I turned 18. haahah XD

Don't really have a question just wanted to say youre awesome!

THANK YOU! Your awesome to! :)

Have you ever broken a finger while typing?

No but completely unrelated to OI I think I have carpol tunnel sometimes. Haha damn technology, its my drug...O_o twitches left eye

You look like a badass. I have no questions, but wanted to let you know that it's amazing to me to see people not allow such complications alter their lives for a negative. You're an inspiration. I hope you stick on the front page for a while.

Why thank you!!! :) Not gonna lie sometimes it gets hard but everyone has a bad day I guess.....but thanks for the awesome comment! And I didn't know I was on the front page until I read your comment! Holy shit!!!!!!!!!! O_O I am fucking pumped right now. haha

Please don't break a finger typing all of this stuff for us

Haha I won't! Don't worry! Only broken a finger once in my life....ironically. e_e

What was the Most painful break that you've had?

Legs are the worst. So probably the recent one I had in my right leg would be in the top 10 at least. There is all the details of it in a response to another question but basically jaggedly broke all the way through the femur which is the bone going between your hip down to your knee.

When I was young I had some problem with my growth plates where I would break a lot of bones. I think it was around 7 broken bones before I was the age of 5. Medical Technology wasn't the best back then and my parents didn't have a lot of money for the best doctors so they went through hell trying to prove that I wasn't being abused by them and there was actually something medically wrong with me. Did your parents go through the same ordeal?

I am really sorry to hear that. :( Hope you don't have any problems now that you are older. Yes one incident in particular was when I was baby my mom took me to the doctor and the nurse started freaking out and yelling in front of God and everyone to call CPS and then my mom had to argue with her and explain to her what I had. Haha now its kinda funny cause that nurse was a dumb bitch. XD

What happens after you break something?

Does it happen so often that you just leave it alone and let it heal in whatever way works, do you walk around with broken limbs and bare the pain or are you wearing plasters all the time?

Also, I feel for you. I've broken 2 limbs so far and can not imagine 400.

Hahahah your name is kinda ironic, in a weird way.....anyway if it's a major fracture like the leg on I spoke of previously then basically bed rest until its healed enough to hold together then take it really slow until healed fully or most of the pain is gone. Haha I don't walk so the is that.....haha jk sorry could not help it. Bare the pain and let it heal on its own. Casts make it worse due to the weight. Sorry to hear that. :( Broken anything sucks!

Does the healing of the broken bones take the same amount of time as the average person?

Yes around the same time, sometimes longer. Depends mainly on location and severity of the break. :)