Showing posts with label OI fractures. Show all posts

Right after the fiber glass cast dries on top of the pillow, and right before scheduling a follow-up appointment - those are the seconds my own fracture management a.k.a 'healing time' begins in my mind. I'm sure biologically the bone cells are regenerating and all of that magical science-y stuff, but in my mind when all is stabilized and I am no longer sweating bullets, my mind and body can actually focus on getting better.

When I say that my mind is focused on getting better it probably sounds like a lot more work than it is in reality. In reality I try not to use the part of my body that has been immobilized, and even that effort doesn't take much conscious thought for me. The weight of the cast, the bulkiness of it, and its general unwieldy presence doesn't really lend itself to being too tremendously useful for me. It ends up getting in the way more often than not: that piece of cast that wraps around my thumb and four fingers prevents me from gripping that twist-open Snapple bottle cap, the straight long leg cast makes bending forward to pick something up like some acrobatic move, and a sling for that fractured collarbone makes zippering a jacket something that requires a sleight of hand like a magic trick. After the first few days I eventually learn to not have full-use or access to that part of my body for the next several weeks. In my mind that is my fracture management: leave it alone, keep it stabilized, don't get it wet, and let it do its thing.

But during the minutes between a dried cast and scheduling a follow-up appointment my parents begin their own fracture management. From what I've observed it starts with a very long and worried face, hand wringing, hovering over the cast like they're protecting a golden egg, and this constant attention around the immobilized limb as if it might speak up for its own needs at any moment. As evening set there was apparently some whisper of sweet nothings for more pillows that the cast demanded. When morning arrived there would have already been clothes laid out that could be easily put on. Then in the bathroom all toiletries and soaps were placed somewhere that required no effort to reach them. In the car I would sit in the seat where no one would have to come anywhere near me when they entered or exited. In a spica cast showers to wash my hair would be arranged with the shampoo that wouldn't sting my eyes. All of this -- and so much more -- were all things that went into Their fracture management. During the first few days all of this would be done with a look of distress, because maybe somehow the gap that existed between the cracked bone had sucked my parents' attention and care into that vacuum of space, and under extreme duress mom and dad were at the every beck and call of those invisibly and imperfectly formed collagen. But I have the liberty of just "letting it do its thing.."

Meanwhile I am usually just learning to adapt, carrying on about my regular day, and occasionally getting frustrated with not being able to tie my shoe laces or write as legibly because I have a cast on. Once I was upset that my left sneaker would look cleaner than my right because I couldn't be patient enough and wait five months to wear both, at the same time. If it seems like I've simplified things it's because I have. I've left out the nightly muscle spasms, the sticky churning sensations in my stomach from the pain medication, and the itchy spots way down at the bottom of my heel or in the crook of my elbow - the places where no amount of bending coat hangers or pipe cleaners could ever reach. But those are all things that happen without my control, things that I have no obligation to cease and desist. I could either learn to adapt or ignore it. Either way, I knew that my body and my bones would heal on their own time.
But for my parents they did have an obligation to me - and that was reflected in their fracture management. Their fracture management was carried out in a way where they couldn't just ignore me, or it, and everything that they saw happening before their eyes. They had to manage it because otherwise, what else would they have done? Sat there and watched? Sat there and twiddled their thumbs and said: oh well, I guess we'll just have to wait around until six weeks is up. Of course not! For them Their fracture management, while it may have at times been a little too suffocating and overly-intense for my patience, was how they dealt with OI (at least in part).

As I got older I learned to recognize what they were doing for what it was. And they learned that as I got older there were things that I would just need to learn to do on my own.

I think I've said it before in some post but I'll say it again: there are moments when the most effective medicine is time, and that's all we can give and all we can receive. It'll happen, all in time.

Something tells me that there are many more than these 8 ways. Because think about it.... how many times have you *actually* had to say the words "I fractured..." before it was already known to the other person? This is particularly true around our family and friends who know us well, the way we communicate when something is iffy happens in a variety of manners. Anyway, you can let me know which other ones are missing in the comments!

In those split seconds after a fracture has happened I am in pain for two reasons:

Already? Again? I mean I know it's supposed to happen because you were born with this - but no one said anything about breaking in rapid successions.

Doctors and pamphlets only ever have phrases like "fragile.." "may have more than a hundred fractures before adulthood..." "bones are prone to breaks..." They don't ever say things like "after you break your femur because your elbow slipped off the desk and landed on it wrong... you will then break your other femur in some other random freak accident, five weeks later. Oh and you will be 13 years old. So while your friends are all experiencing growth spurts and changing shoe sizes every month, you'll be changing casts instead." No one ever says that to you. You're just supposed to realize that on your own. 

And I know that your parents told you about how you broke every month when you were a baby, but that was when you were much younger. That was back before you had any real memory, those fractures are filed away in the hospital's memory - they can be found in slides 1-58 in Volume I of Patient X-rays. Those are not burdens that you carry, so when your parents say things like "it's happening again..." you sit there silently wondering "but what's happening again? Does that make it any easier for you? For me?" And you'll realize, on your own, that the answer is no it doesn't make it any easier. Not really. This is when you realize how lucky you were, in a weird way, when you were much younger and have no recollection of what was going on. You'll realize the meaning of the saying ignorance is bliss. 
Perhaps this is when you start to think about how unfair things can be. You might even begin to think about how little choice it seems you might have, in the grand scheme of things. You didn't get to choose whether or not you'd get this particular gene mutation (because no one did). You didn't get to choose whether or not you'd break a bone in the middle of your favorite class (because why couldn't it have been math instead?). You didn't get to choose whether or not you'd break the same bone that had just healed two weeks later. And you certainly don't get to choose how long it takes before you are healed again. The list could go on about all the things that you didn't get to choose to do or have happen. Here's a secret though: It's the same thing for everyone, just a different set of choices they don't get to choose. 

But that's not what any of this is about - in the grand scheme of things. People don't brag about all the life choices they don't get to choose. People are not making lives and futures from the choices they had no choice in - progress is made from the decisions we do make. And then you'll realize that there are always options. For every choice you don't get to choose, there is at least one other choice that you do get to have the option to make. It's a one-to-one ratio. So for every bone that breaks we have the option of taking care of ourselves in order to heal faster. We have the option of continuing our day-to-day routine the best that we can. We have the option of learning from our mistakes. We have the option of now remembering what our body can and cannot do. We have the option of gritting our teeth and toughing it out. We have the option to decide that this is not going to be a reason to stop.

In the mean time just remember that doctors and pamphlets will always tell you things that you must know. That's really all the job of an "official authority" boils down to. They might not always tell you what you should know. That stuff you probably will have to realize on your own.

Be well,
Sandy

These incidents happened more than a handful of times, but not too frequently to make them a regular occurrence. But every now and then a fracture would happen and my parents couldn't get me to my orthopedic right away.
When these injuries happened it meant my parents would put a temporary brace or splint on the fractured area. They would help get me into a reclined position on my bed, keep my brothers from playing near me, put a stack of books and a bronze bell in case I needed anything near by. Going to sleep this way was the toughest part of the whole situation for me. Despite the temporary splints and braces, the fractures was still fresh and sensitive to any movement or the slightest touch. Fresh fractures also seem to be the breeding ground for muscle spasms, and though I wasn't physically moving it felt like my muscles were tripping the light fantastic till the break of dawn. I would go to sleep repeating in my head, "don't move in your sleep, don't move in your sleep, don't move in your sleep..." hoping that maybe I could teach my body that having brittle bones can be less painful if it would just understand: don't move. 


Eventually after drifting off and then jolting awake, and then slightly shifting my body weight, or itching a spot, or cracking my back, or ringing the bell for another glass of milk, or flipping the pillow over again -- I would fall asleep. Finally I would reach some sort of compromise between the fresh fracture and my body's clear exhaustion. Both would collapse across some invisible dotted line that stretched between Point A: Moment of Fracture to Point B: Moment of Healing. The two parties are completely zonked out, snoring, drooling, deep into la-la land - it translates into some rest for me.

And then morning would come. Usually I would try to wake-up before my parents awoke in an attempt to enjoy the calm before things started being moved around again. Even to this day, there is nothing I despise more and find more uncomfortable than a fresh fracture being moved. I hate it. I would rather repeat all of high school math than be moved around with a non-stabilized broken femur. Please, spare me. But that dreaded moment would come. When I got older, around middle school, I would tell myself it needs to get much worse before it gets much better. And that was the only thing that I kept in my head as I gritted my teeth while my parents, inch by inch:
Transferred me from the bed to the chair. And then from the chair to the toilet. And then from toilet back to the chair. From the chair to the car.. (all the while I am whimpering like a baby)... and on until we had arrived in the x-ray room, and are well on to making a little bit of progress towards Point B: Moment of Healing.

The mental and physical sensation of pain is always going to be overwhelming. What's more is that it's only ever going to be an overwhelming sensation that you can understand. You're the one who knows how big it is, how persistent it is, when it will appear, when it fades, why it comes, or when it goes. So with all of these facts in mind, what are ways that we can better manage the pain? There are a million pain management techniques and tips out there. There is only one that I have found that works, for me, every single time. Inch-by-inch and bite-sized pieces:
When I lay in bed with a fresh fracture thinking about how I need to somehow get from there into the car, and then onto the highway with all of its swerves and bumps - I will only want to curl up into bed and refuse to move. However, if I think - now I need to move 4inches over and into my chair. The pain seems far more bearable and less infinite. In fact, the pain becomes finite because soon I know I'll be able to say: now I need to move from my chair to the examination table so he can put the cast on and it's all done. Destination Point B: Arrived. 

Before I begin -- I bet 9 out of 10 readers already knew what this post was going to be about just from the title.

When you're born with O.I. you learn quickly that fractures will happen regardless of how careful you are, or what you're doing (or not doing!) And your family members who take care of you, raise you, and live day in and day out along side you learn the same thing. Sometimes when I am describing O.I. to someone who is unfamiliar with it, I always wait for that moment when they try to understand the fragility my life can have. Their eyes widen, their face tilts back in shock, and for a few seconds they are speechless aside from a softly uttered "...oh my.." And in my attempt to dim the light on the 'horror' of my 'situation' I, as nonchalantly as possible, say "shit just happens.." with a shrug. Because really, at the end of the day, that's all I can say about it.
But when you're on the other side of the fence I imagine that there is nothing nonchalant about it. When you're 5, 9, 11, 17, or even 25 -- when your actions have some part in breaking a bone of your friend, I imagine that the explanation is not as simple to you as "..it just happens.." I know that it's not a simple explanation because I have watched my friends fret over "what I did.." And I have watched their faces turn into one of deep embarrassment and guilt when I roll into school the next day with a cast on my arm. I have read lengthy apology letters written in Crayola washable markers, passed to me in the middle of 7th grade science class: Sandy I am soooooooo sorry. I'll understand if you never want to talk to me ever ever ever again.. And no matter how many times I have said "it's okay, these things just happen.." or "I don't hate you, don't worry it was just an accident.." I am never able to lift the feelings of guilt, shame, or burden off of their shoulders. It doesn't matter how long I've known the friend or that they know about the O.I., or even how well I try to mask the pain from the injury -- it's always that same winded blow to the stomach face that they look at me with when they realize what has just happened, all in a matter of seconds. 


Why don't I ever get angry with them? Why have I not ever called them berating names afterwards? How come I never hang the incident over the head as blackmail? 
I think that in part this is because of how my parent's raised me; or more specifically, it's how they treated fractures before I ever began school or knew that 'friends' existed. Sure, my parents have been frustrated by the frequency of fractures that have occurred or just by the fact that their daughter is hurt -- but never angry. Or if they have been angry, I never knew anything about it. They have always treated fractures as something that happens "because you have O.I..", never blaming me, my brothers, or other family members for an injury. In turn, as I have gotten older -- I have rarely been angry about a fracture. My parents set the model for my behavior; the protocol for what to do includes much more than just "call the doctor, and get out an old splint.." I watch how they listen when I tell them "I think I broke.." and I watch as they listen to the doctor explain the x-ray. And I am still watching as they helped me put my shoe back on a foot that was in a cast for 6 months. Yes I have felt frustrated, sad, in pain, and even felt helpless about a broken bone but never angry. It seems that a broken bone happens so swiftly that in those seconds there is no time for any sense of injustice to have left its mark. And after the bone has been set and I've been put into a cast, there is no time to vent at the gods and give fate an earful about how angry I am that the incident happened. I am already focused on recovering, on healing, on hanging out with my friends at school and having fun.
The simple response: Because we're friends.


So maybe all of this is something my friends will never understand. For me, experience has taught me that people will continue to feel remorse, guilt, or embarrassment when they accidentally did something that results in a break. I understand that such a reaction is to be expected and is natural. I suppose all I can do is hope for the day that others will also understand that my own reaction to a fracture is just as natural as well.

In previous entries I have talked about what is going through my head as my body registers that a fracture has just occurred. But what is going on around me? Let's shift the camera lens to my mother --

Many readers already know that having a fracture isn't the only source of bone pain. I know that I'm very fortunate to not experience chronic bone pain, so for this entry I thought I'd do my best to describe the various kinds of aches & burns that I have difficulty explaining to my un-affected family, doctors, or friends... so, in other words.. I've never actually told anyone about this.


1. The Dull Ache That Spreads. It might start in my elbow or in my knee, an ache that just pops its head in the neighborhood because it was bored. After it settles in for a bit it'll take a little jaunt down the length of my arm or up my shoulder, or maybe it'll troop up my femur to check out the scene. Sometimes I wish I could just tell it to get lost or say something like, "nope, nothing's changed. Still 3ft tall and stillll not walking. Thanks for swinging by though, tell your mom I say hi!" This next bit is going to sound weird but if it happens in my arm, if I crack my knuckles it'll feel better. Or sometimes if I change sitting positions it'll fade a bit, I imagine when I do that the pain gets all discombobulated as I jostle it around - giving it a whirl before it regains its original pain in the ass mission again.

2. The Burn At The Peak. This happened nightly during the months and weeks when my tibias were at their worse. When I was younger both of my tibia bones was at near right angle degrees, it looked like I had two knees before they were finally rodded (several times). On the x-rays there was no visible fracture but my doctor would tell me that there are probably several tiny microscopic fractures at the peak of the tibia bone, and every night for awhile it would burn. Several times I would wake up and throw the covers off, touching the top of my shin making sure that the skin hadn't just burned off. I wanted to ask what the microscopic fractures were doing on top of that peak, having some kind of bonfire party before the big operation? Once I'd finally found a comfortable position to sleep in of course the burning would happen the next night, and then I'd try to sleep again in that position but it would never work. I had to cycle through various sleeping positions, constantly trying to find the next coldest spot in my bed for my leg.

3. The Ache Inside The Cast. You would think that once inside the cast the sharp pain and aches just stop. But somehow that isn't always true. Sometimes no amount of fiber glass and cotton can subdue the ache, and these can sometimes be the worst. And most of the time the aches aren't even in the same area where the fracture was! At first I'll think that it's just a muscle spasm, but then I realize it hasn't got that same edge; however, since there is only about 500 layers of cotton and fiber glass separating me from the ache I can't exactly go check on it like I usually do. Instead I'm resorting to wiggling inside the cast, and when I say wiggling I mean moving microscopic millimeters so as not to disturb the actual pain of the fracture. I might as well be trying to walk through a cave of sleeping lions!

4. The Sharp Ache That's Not Sharp Enough. It isn't the same sharp breath-stealing, heart-pumping, sweat-pouring pain that a fracture brings on, instead it's just a few steps below it. It's like the long lost cousin of the actual fracture that shows up at a family reunion, and no one knows how to react to him. He's kinda awkward - doesn't exactly have the best manners, has a shady history, and a weird mole on his eyelid. But he's there at the family reunion and absolutely insists on being in every single picture. Most of the time, this is the ache that happens in the same area where I will have my next fracture; it's like the foreshadowing of the hot mess events to come. Usually I just quietly stow it away in my head, smiling into the camera anyway and trying my best to keep this weird long lost cousin at arms length away.

In high school my power wheelchair didn't have a seat elevator. This meant that I had a tendency to climb on top of my wheelchair seat in order to reach a lot of things. Everything from getting books out of my backpack to pushing the higher buttons on the vending machine required creative acrobatic work. My arms are freakishly long and also have a super-power strength that the O.I. doesn't affect as much. (Probably it's because I use them so often and the muscle strength has made them stronger than any other part of my body... I haven't fractured my arms since elementary school!)

Anyway, I was forever climbing and clambering in and out of my wheelchair -- initially terrifying my friends and family but once they realized I had the monkey-acrobatics-routine down pat, they backed off. It was just the way I did things, and usually I jumped into this routine before anyone could ask "Sandy do you need help with the-- oh.. okay.. never mind.. I see that you got it.." 
Aside from being able to assert my independence and ability, I found it fun to be climbing in and out of my wheelchair. Being able to jump up and down every now and then gave my backside and legs some reprieve from the strict ninety-degree-angle sitting position that I was otherwise in for nearly 8+ hours of the day. I also enjoyed the creative problem-solving this act required. For instance being able to lug my 12lb Algebra II textbook out of my backpack required that I use my dominant hand to steady myself, and then my right hand to unzip my backpack, and then balance on my knees.. the point is, these situations presented themselves to me as problems only I would know how to best solve. Sure there were times when I would drop books on the floor, or nearly slip off my wheelchair -- but I always learned from my mistakes, always adapting to the situation and remembering to never leave my wheelchair turned ON when I was up and out of my seat..

But this post is actually not about a time when I fractured because I was doing one of my acrobatics. (Because I never have!)This post is actually about a time I fractured because I DID NOT do one of my monkey-bar-routines.

All of the water fountains at my high school were at least a few feet out of reach. And even when I could stand on my wheelchair seat, I couldn't figure out a way to steady myself while bending over, and pushing down on the lever to get a drink of water at the same time. To avoid that hassle I usually just trooped down to the nurse's office instead. Not only would I be able to miss a few more minutes of class, but she had candy, and she included ice for her water.
"Oh hey H! What are you doing?" A few times during my trips to the nurse's office I would bump into friends along the way.
"Not much just getting meds. What are you here for?"
"I just wanted a drink of water. With ice." 
"What class are you in?"
"Chem. It's boring and I don't understand what's going on and nor do I care." Mrs. B, the nurse, enjoyed having students in her office and she never rushed us out so I always took my time. She poured a cup of ice water into a cup and handed it to me.

In one hand I held the plastic cup, in the other hand I was steering the wheelchair's joystick, and with my head turned back I called out to my friend,
"Bye! I'll see you later in Choru-" 
"BANG" 
"Umm .. Sandy, that was the door frame.." The cup of water had sloshed all over the place, conveniently hitting all the awkward spots on my pants, my leg rest was all bent awry and my leg was throbbing out of place.
The nurse came rushing out of her office and came to look at the damage. Chips of paint had fallen off the door frame but she could immediately tell that my lower foot had been broken.

My friend H and I will laugh about my door frame incident now, but at the time it was totally the most uncool incident to have happened during my high school career. I mean, aside from the awkward water spillage parts...

What was YOUR lamest fracture incident?? Tell me. 

I remember there were times when to get a point across, my parents told people that they had a severely handicapped child:
"My wife doesn't work because she needs to take care of our severely disabled daughter.." 
"Our family appreciates any financial assistance you may be able to provide. We have a wheelchair-bound, severely disabled child and much of our family's attention & finances go to her care.." 

But then there were times when I was suddenly capable of everything in the world:
"It's important that Sandy participates in everything her classmates do in school. There is nothing wrong with her mind, when she doesn't have a broken bone nothing is wrong."
"There isn't anything wrong with her - she just can't walk." 

Needless to say hearing how my parents described or explained O.I. to others was very confusing for me. Sometimes they made me out to be extremely severe out of nervous protection for me, and other times I might as well have been any other kid who was encouraged to do everything I wanted. Personally, I never considered myself to be severely disabled. I could probably count on one hand the things that I wish I could do but I can't (future blog post!) - for everything else though I have figured out an alternative. This has led me to believe that the interpretation of 'mild' 'moderate' or 'severe' varies between the individual affected, and those who are their caretakers. For instance, when I was in a spica cast I didn't consider myself to be severely disabled. Though I needed help with virtually everything - I was still able to live my life. There was always a way to do what I needed to do and what I wanted to do, and therefore in my mind I didn't consider myself to be severely disabled. However I'm sure that for my parents my time in a spica cast was one of my more 'severe' O.I. phases. Simply put, they had to do more for me than when I was in a long leg cast, or even in no cast at all.

I get slightly uncomfortable when people compare severity of O.I. or any other disability. How do people determine severity? Is it by the amount of pain? Limitations? Capabilities? Bone deformities? Number of fractures? Surgeries? Prognosis? The categories are limitless and there are no clinical benchmarks that I know of or empirical standards to measure severe-ness by (excuse the social science in me...) Granted some cases are pretty obvious - I know of O.I.'ers who are able to walk without any assistance, while others have difficulty sitting in an upright position (and they even all identify as the same O.I. type!)

All of that aside -- and back to the original point of this entry -- observing how my family defined my disability shaped my own idea of it. I grew up understanding that my O.I. can give me more trouble than other times. There are times when I need to be paying more attention to 'it' than others, and other times when it's just a thing that allows me to cruise around town and be at ass-level with everyone else. Since I ultimately didn't agree with my parents' idea of severe or mild, when I got old enough, I didn't take their definition of my disability as my own. At some point I realized that they are not the ones who live with it, they're not the ones who wake-up every morning and decide whether or not today will be a high or low activity day, and are not the ones to decide when to take the pain medication after a fracture. Sure they may have taught me how to make these decisions on my own, but I've decided that it makes my life easier and less barrier driven when I don't have to consider whether or not I'm 'mild' 'moderate' or 'severe'; also, the barriers are less of an affront when I am not carrying others' definitions of my disability on my shoulders.

"Sandy, I was reading on-line that there are different types of O.I. So what type are you?" My friend from college asked. 
"Oh I don't know. I'm clinically type III but sometimes I think that I'm just my own type after all."

For this Top 5 Pet Peeves post I wanted to cover a few things that annoy me when fractures happen. All fractures are annoying and painful to deal with, there is certainly no doubt about that. But the way some breaks are managed can make the entire situation more of a pain than is already occurring. (In case you missed it this was my previous Top 5 Pet Peeves post)

1. Don't ask me "Does it hurt?" every 5 minutes
Yes it hurts. But chances are (especially in the case of a fresh fracture) I am trying to calm myself down (mentally & physically), and trying to internally stable my body a.k.a adjust to the pain. Reminding me of the pain actively defeats the efforts I am making  under already stressful conditions and this makes me incredibly frustrated. Checking-in with the pain every 30 or 60 minutes is fine and I understand that many doctor's or pain management teams will do this to adjust pain medications as necessary. But a frequent and constant reminder? It'll only get you an irritable "no d'uhh" or even a flat-out lie "I'm fiiiine" reaction.

2. Please remain calm or pretend your hardest to remain calm
Bones have just been broken. This means that the more jostling/moving whether accidental or intentional is done the more pain I will be in. Getting frantically hysterical, forming crowds around me, or being in a setting with a lot of commotion doesn't help things and will be more difficult for me to remain calm. Whenever I broke bones in school, on a playground, or in public - I would always try to find some calmer corner to collect and assess myself with the help of a close friend or family member. Although I know it may be difficult, remind yourself that though a fracture has occurred bones are able to heal; remaining calm will only help that process along.

3. Listen/pay attention to the injured person!
This is a pretty obvious tip for older children/adults who are better able to communicate. However if you have a baby or a toddler who is just learning to express pain or fractures, pay attention to their bodily movements. When I was a baby my parents told me they would gently tickle me and whichever limb did not move, or moved with that cry/scream would most likely be the injured area. I cannot stress how important it is to listen and allow the patient to tell you what is the matter; especially for younger children this let's them know that they are in charge of the O.I. and not the other way around.

4. X-Rays

L Tibia pre-rodding

Fracturing is terrifying because most of the time I do not expect it. Then when it happens it results in a sharp 3 to 6 week reminder (in a cast) of what my body isn't capable of doing: hey stupid - you shoulda known that would hurt! Some O.I.'ers may agree or disagree with me, but the next most terrifying thing for me is The Sneeze. Some of us will fracture ribs because we sneeze too hard. It's totally pathetic, I know.

It'll start with a tickle in my nose but it's the least funny thing in the world to me. Immediately I will get nervous, tighten my stomach muscles, tense up my shoulders and then wait. Sometimes if I feel like it might be a particularly big sneeze I'll draw in a big breath and if I'm lucky it will come out like a stifled cough.

A few days ago, on the facebook wall, I asked what the worst bone to break was for people. For me it is any rib - which is odd because I don't even count them as "real" broken bones. They aren't a 'big' deal and are never traumatic fractures for me but they are, nevertheless the worst. Ribs are difficult if not impossible to put a cast or a brace on. And no matter how I move I never seem to be able to get comfortable, unlike if I broke an arm or a leg - the cast aides the broken limb by stabilizing things or making it immobile. With ribs I am suddenly walking on eggs within my own already fragile body. I am afraid to breathe in too deeply, to laugh, to twist, to bend, to shift, or reach up too high (and for someone who is dependent on the use of her arms.. this can be incredibly limiting).
Sure there are medications that I am prescribed but these never seem to take the edge off for long. There is tylenol with codeine or valium and other muscle relaxants - but even when muscles are relaxed moving the wrong way even one centimeter still brings a sharp jab to my side. But I haven't been totally honest, I haven't said why, exactly, breaking a rib is the most annoying fracture for me:

It's because with a broken rib, I am constantly reminded of the O.I.

With a broken arm or a leg, even despite a 5lb+ cast being lugged around - after a few weeks I can get used to it. The fiber glass fades to the background and I adjust quickly to my 'normal' routine again. After a few days with a cast on my arm or leg I don't have to think about how to transition to the toilet or bed, or in which position to sleep in that will be most comfortable for me at night. Even after a few days the pain will fade and the muscle spasms will stop. Not so much with a rib fracture. With a fractured rib I sometimes forget that anything is broken, I'll go to push myself up in my wheelchair and then double over in shock from the pain. Or I'll have to push myself around the house in increments of a few inches of distance at a time, stopping every now and then to take a few rapid short breaths. Broken ribs are annoying because they make me feel as though I am constantly tripping over a symptom of O.I., as opposed to living and seamlessly meshing it into my life.

Fractured Ribs:

• I have found that hugging a pillow against myself helps to relax my body and make the broken rib feel more comfortable
• If you find yourself needing to lift a child or someone with a broken rib - I would strongly suggest doing the cradle style pick-up instead of lifting under the arms
• Be sure that those around you know that you have broken a rib. I dread telling people that I broke a bone, but I have found that especially if it's an 'invisible fracture' giving people a heads up can be extremely helpful
• Once you find yourself in a comfortable upright seated position, try your best to remember it and be cautious with it. Jostling around too much with an unstable fracture can get dangerous!
• Don't try to be a hero, if it hurts take the pain medication
• Many OI'ers have learned to 'play around' with their breathing until they find the right depth of breath to take in order to not cause pain to the rib while still getting enough air - it will sound weird but it's totally necessary to do!

My mother was rushing to her doctor's appointment at Brigham & Women's Hospital. Hurriedly she plopped me into my stroller and made sure my legs were through each of the holes, and my hands on the lap bar that went across. She pushed me over the old cracked sidewalks of Boston and headed over to the curb cut. The stroller's front wheel hit a stubborn cobble stone that jutted out, as if a button was pushed that's when I soared out of my seat and face down onto the pavement. My leg broke on impact.
Several years later I was wheeling around in my room in my manual wheelchair. Once again I had neglected to listen to my mother and didn't clean clutter in my room. My front wheel hit a scattered sneaker lazing about and my wheelchair tipped forward. I fell face down onto the ground in a puddle of blood that had begun to collect around my head. Both of my femurs had snapped.
A year or so later I was sitting in the dining room at the table. I refused to finish my string beans and firmly insisted that I was done with dinner. My walker was parked to the side of my chair and as I prepared to slide off the seat and stand on the floor, ready to walk away in my usual manner - I miscalculated. Suddenly my walker seemed miles away in front of me as I fell face first onto the dining room floor, and again both of my legs broke.

Though these accidents happened more than 10 years ago, not only do they replay in vivid slow motion in my head but the pain that they caused still makes me wince to this day. When I think about my femurs or legs breaking the muscles in those areas tense, and I give them a slight wiggle just to make sure that they aren't actually broken and that everything is okay. It is no surprise then that not only do I break my legs most frequently but that I am terrified of tipping over, landing face first, and of uneven outdoor surfaces. And when I mean terrified I mean that if you didn't know me you would think I have a really irrational fear of slanted curb cuts, or of insisting that my medical equipment  is firmly in front of or next to me. I am now overly cautious when going down curb cuts, and when I sense that it's too steep not only do those accidents replay in my head but there is even a slight horror that comes over my face. My eyelids may slam open in alarm, brows arched with uncertainty, and my lower lip twisted into a writhing fear. When all of these things happen I quickly swivel around and go down the curb cut or hill backwards. I figure if the chair tips it can tip backwards, I will be seat belted in, my head rest will prevent my skull from shattering, and those anti-tip wheels in the back better be working! I also turn around and go backwards because quite honestly I just don't want to see another disaster happening again.

I call this Post Traumatic Fracture Disorder. I'm sure every OI person has it, we have all experienced a particularly terrible break, a horrendous accident, or some kind of equipment or playground that brings back a particularly painful snap. While these are painful and makes our stomachs churn, and our hands grip our joystick or wheels a little tighter - I have come to find that there are ways to help ease the extreme discomfort that these situations may bring on.

Overcoming Traumatic Fractures:

• Inform the person who is with you or pushing your wheelchair if their 'pushing style' is making you uncomfortable or feel unsafe. It's not you being picky! Chances are, the person pushing may be uncertain of whether or not you can tell the difference anyway. To them a push might just be another push - but of course if you're a chair user we can all tell the difference.
• Learn from past incidents! Those details might bring terrible memories to you and you might start breaking out in a cold sweat if you see that see-saw again, or remember the slide. Were you positioned in a funny way? Were you not being as careful the first time? Go over the situation in your head with your eyes closed, try to recall what went wrong and focus on what tweaks you might make for a more successful experience.
• Be confident in yourself. O.I. shouldn't be a diagnosis that prevents us from living a fulfilling and rich life. If you are about to do something again that wound up in an injury in the past, remind yourself how you got through the first time. Be calm. 
• For parents, watching their kids get injured over something they did can be traumatic by itself. Maybe you picked your child up in a funny way, or put a seatbelt on too snugly? Remind yourself that it wasn't YOU who caused the fracture. Accidents happen, your child will grow stronger, love you all the same, and heal. 
• Don't be afraid to say "no." There have been plenty of instances where I have wisely turned down opportunities to jump into a ball pit, crawl through a jungle gym maze, or whoosh down a twisting water slide. Kids with O.I. know their bodies and limitations the best, telling your child that it's okay if they don't feel comfortable doing something is key to allowing them to take control over the O.I. Saying "no" isn't always limiting, sometimes it's actually liberating and the wiser option. 

Continued from previous post

After fractures happen and when the broken limb is all snug in the cast I tend to sleep a lot. This is particularly true right after the new cast is put on - my body is exhausted, relieved, worn out, and it's a self-reliable consolation technique for me. The ability to just close my eyes and drift, even if on the bed next to me a 4 year-old is crying, and on the other side a cast saw is buzzing as a 13 year-old is getting his cast off. For me this is my lull period, and in high school I remember one teacher asking me "when you fracture and get a cast, does it slow you down a bit?" And yes it most certainly does. It slows us down but it doesn't stop us.
Whether I am drifting off or slowing down these are all parts of my healing process. It's a time when I remember, in a very literal sense, who I am and what I have. In doing so and when I wake up in the mornings to pull rubber bands over the plastic bag before my shower, I am realizing that I am different but it is working out, the challenge I am dealing with is going to be okay. But I wasn't always like that.

After this femur fracture I lay in bed unwilling to even move to go to the bathroom. I told my mom that I could hold it for the entire day, but she would insist on helping me get out of bed - shift into my wheelchair and then onto the toilet. I hated the lag, the dependence, and the weight of the physical burden of the fiber glass cast. During my morning routine whether I was brushing my teeth or pulling pants on, I would always be frowning at the broken limb; silently holding a stare down contest with it, and the only thing I knew was that I was determined to win. But as the days went by my cast would be covered with scrawls, signatures, and silly doodles from friends and family. It would get harder for me to be grumpy with it and as I grew older it occurred to me that it made little sense for me to be irritated about the fracture. First off, I knew that I was born with a genetic condition and breaking bones "just happens." Secondly, it also dawned on me that being mad about the cast only made me angrier with myself. It was my leg that broke, my pain that I had to deal with, my healing process that I needed to get through. If I own all of that then why shouldn't I make it better for myself? And so over the years, and after numerous casts, hospital visits, and surgeries I began to slowly learn how to take charge. The learning process is never completed, to this day I still go through patterns of this behavior every now and then. And it will take me 2-3 days to remind myself of what my rehab process is.

"Winning" that staring contest with the cast happened the day I realized that OI is a characteristic of me, not my entire being. It doesn't define who I am, the condition doesn't hold the reins of my life, and it will only run my life as much as I allow it to. The subtleties are tiny, but once they are recognized you can begin to see how such pivotal points can tilt a perspective almost 180 degrees.

"Mom I don't want to go to my piano lesson today."
"Why not? I will help you get in and out of the car, it will be fine."
"I'm tired and I just want to sleep. I just don't want to go."
"You made a commitment to your teacher and to your music lessons. You need to follow through on your plans."
"But I broke my leg! They will understand if I skip just this ONE lesson!"
"No, you are going." 
I remember this conversation over 10 years later because my mother was always big on "keeping your commitments." But more than just another one of her lectures, I am able to appreciate what she was trying to show me:. My commitment to the O.I. ends after fractures are on their mend, and the appropriate accommodations have been made. I am now always committed to living my life first, and the O.I. second. And because most of the rest of the world doesn't have O.I., I will grow to be the stronger person if I am able to "keep up" with them - regardless of whether or not "they will understand if I skip just this ONE..." That is how I am able to continue, and it is how I know the brittle bones will not ever affect my spirit or will.

Fracture Management Suggestions:

• When a fracture has sustained, listen to the child. If s/he is unable to communicate yet, pay attention to body movements and the difference in cries
• Keep calm. Being frantic and making a huge fuss makes it incredibly hard for the injured person to keep themselves calm; being calm allows less muscles to be startled and accidental jostling
• Let the person know when you are going to move anything, what you will be moving, and where. Only move the person when s/he has given you permission
• Allow the injured person to be as involved in stabilizing the fractured limb as possible
• Every person is different, some kids are able to bounce back into a regular routine within hours (and this also depends on the fracture) - others may take a few more days. Rushing the process doesn't help anyone. 
• After fractures have occurred and the person is in a cast, do not over condescend or over-assist. Just help where and when you're needed! Figuring out strategies to be independent when injured is incredibly important. Frequently when I was younger I would attempt to get out of bed on my own, or take showers on my own - completely freaking out my parents but my "childish risks"  are actually incredibly useful to me now as an adult!
• Gently encourage children to return to their "normal" routine and if accommodations or a different approach is needed to complete a task, allow their in-put into the situation. Don't just automatically "fix" or "alter" the situation on your own, you'll be surprised to find how innovative we can be!

Continued from previous post

Sometimes it can be a few minutes, at worse it will be days. But the moments between a fresh snap of bone and stabilizing it are excruciating. If I could map out a linear graph of the pain in those moments it would be absolutely spastic. I would draw a row of shark teeth and then a random plateau amongst the daggers.
My mother never looks directly at me when I first have a fracture, she first looks at where and what I'm holding. She always seems to use her X-Ray Mother Vision to pierce through my grip of the injured area. With every last cubic inch of muscle I have I pore it all into two places at this point: 1. my eyes 2. the hold on my femur. There is nothing that could escape the wild pained look of my eyes during this moment. I am aware of how many centimeters the bed has sunk as my mother shifts her weight next to me, I am aware of how she has opened the splint in her hand, I am aware of my dad standing by silently looking on - all of these thoughts are calculated into my head in preparation. To get myself ready for: The First Positional Move.

As I wait for someone to get the proper medical equipment to stabilize a fracture it might look as though I am just lying there whimpering. But I'm not. I have first tried to internally shift the muscles and my body into a position where the pain is bearable, careful to not relax or tighten muscles too quickly or slowly; then it's my breathing - it has slowed but is still nervous and unsteady, like an infant's unsteady first wobble. Most of the time I have managed to stop sweating, my body and skin cooling off but I know this only lasts for a few minutes until the broken limb is moved.
Now my mother looks at me. Her face is blank each time, blank with the determination and readiness of a runner at the start line. That is the face she puts on just before The First Positional Move. Her face is the canvas that this particular fracture's pain will be visualized, it will be reflected as she winces with me and says "ow" along side me. She and my doctor always let me help to hold the broken limb, especially during The First Positional Move. This time it's my femur and as she cradles the palm of her hand beneath my lower leg and knee the upper half of my entire body tenses. I try to ready myself and even, if possible, recall the pain from a previous fracture - as if to use my memory as a kind of buffer for the real thing. I squeeze my face and shut my eyes, and after she says "2,3, go.." I hold my breath as she slips the old splint underneath my leg and puts the velcro straps across it. My body once again returns to a state of frantic cooling off, of an unsteady gait-like breathing.

When the limb is first stabilized the transition into the car or ambulance is not as painful. It's uncomfortable in comparison to the rest of The Positional Moves - and there are countless others. The varying x-ray positions, the first time that old splint gets taken off for a new cast, when pants are slow-wiggled n' slid off, then the screaming and the crying begins again. But even in this time as the cast sock is slid on, and the endless rolls of cotton is slowly wrapped around and around, my fingers have barely budged from the position. My doctor and mother follow my lead, but their directions are given in the form of every cringe of my nose bridge or breath held and eyes closed.
The next part is my favorite. Yes, I have a favorite part of the whole fracture stability process - I'm an odd duck I know. But when the cast technician dips the wrap into the warm water I am finally able to breathe regularly again, almost, in a sense to return to my groove. And all of the chaos inside of me that resulted from the havoc that was wreaked is magically restored as the warmth and heaviness of an assured bandage takes over for me.

This'll be a 3-part entry where I 'walk through' the process of fracture management. Just a reminder: these are techniques I have used in the past and from trial & error have learned that they work for me. My suggestions that usually come at the conclusion of each entry will be at the end of the final part in this series.
--
At this point I have long forgotten what it was I was trying to reach for, but I remember I was alone in my room and everyone else was busy being together. Sitting in my rigid pink manual wheelchair I squirmed my way into a kneeling position in the seat, then grabbed the arm rests on either side and pushed myself slowly up to a stand. First I reached out with my right hand, the weaker one, and shifted more weight onto the left side of my body. When my fingers gripped the shelf I moved my left hand over and grinned to myself. I could finally see The Top Shelf, the one where all my older brother's "cool things" were kept. These "cool things" were never actually defined to me, I just knew there were things up there that I wanted to know about. After I had satisfied my curiosity and searched enough amongst the mysterious depth of The Top Shelf I could feel my legs and arms getting tired, it was time to sit back down. That's when it happened.
The moment happened while I was mid crouch, one leg was bent and the other was just about to fold neatly beneath me but instead a mess spilled forth. Many of you have experienced this disaster, it's oddly contained but wreaks havoc in that area, like the epicenter of an earthquake. The reverberations could be felt as it spread around my femur, throwing my psyche into a sprawling and flailing helpless thing - completely unlike the usual calm and mischievously quiet it usually is. Soon the ripples crept up my throat in a frenzy and the numbness that rooted itself in the crack had found a voice in my scream.
I stayed in that mid action position even though it hurt, but it hurt even more if I budged even the slightest. In those moments I am certain that the only muscle that won't hurt a fracture are the muscles that make a smile. But try to tell anyone to smile in that moment, and you tell me how they respond. My dad was the first one into my room, the first look he gave me and he knew the whole story. He grabbed me under the arms and as my body collapsed into his huge hands my hands gripped the slowly waking monster in my thigh. I tried to keep it calm, to keep the monster from bursting out of my skin. I always fail in this struggle and even at that age I knew it would be hopeless, but I try to grip anyway, I tried to hold everything together.
Dad put me on my bed and didn't have to ask questions. My entire body was contorted towards my left side, it didn't take long for me to start sweating - this only made me try to grip harder as I didn't want my fingers to slip. Since I don't have children of my own I don't know what it's like to watch your child in agony, but I do know that what sounds like static screams to others speaks the hard truth to a parent's ears. It was rare for my parents to ever have to ask me "what happened?" They somehow always just knew.
By this point my mother had rushed upstairs and opened my "cast closet" the closet that held every spica cast, splint, sling, and ace bandage that had ever touched my body. After she found the necessary one she ran downstairs and nudged my dad aside. I whimpered as she edged closer to me and in that pathetic sound I was telling her that it would hurt to move, she understood and slowly knelt down.

I was 7 years-old and sat with my legs sprawled out in the crib with my younger brother, he wasn't even a year old yet. As I held his stuffed animal I watched as he pulled himself up to a stand,
"Andrew, Andrew, look at what I have here!" Earlier in the day my mom had told me to repeat his name to him so he can learn it. His pudgy fingers gripped the bars of the crib and he pulled his diaper cushioned bottom up, his chubby legs fumbling underneath him until I saw the light bulb flash over his head, he had figured out what the soles of his feet were for. He turned his head to look at me and before I knew it I screamed in agony, Andrew had let go of the crib bars - his plush baby's bottom had snapped my tibia.

How many of us have had friends or family members unintentionally injure us? For me it has happened for every school I have ever been in: playing 4-square in elementary school, goofing off in Spanish class in middle school, at lunch by the vending machine in high school, and in college -- well, I don't exactly remember what happened that time. As I got older I had the capacity to feel guilt and understand the finite details and genetic line that separated accident from "it's just the way my life is." Most of the time though, particularly when I was much younger, that line was blurry and smudged with tears of frustration, x-rays, and isolated time in casts. At once the x-rays would show very clearly that my bones had broken because I have OI, yet for a young child the jagged mountain of understanding to climb can be overwhelming -- I broke a bone because Johnny bounced the ball too hard at me. But I know Johnny didn't mean it, but now Johnny still gets to run around and play and I'm sitting in class while everyone else plays. After I turned about, 9 or so -- I began to "get used to it" and understood that these things happen. So the next time a friend accidentally injured me my face would freeze, I would try to give only the slightest hint of a wince, stifle my "ouch!", but we would look each other in the eyes and just know, like kids who broke their parents' best china, that something terrible had happened.

We all have different ways of dealing with fractures, depending on how much or little it hurts. For me I tend to lean towards laughing it off as quickly as possible. I'm eager to get over it, race into the appointment, get the cast put on, enjoy the immediate warmth of the cast over my broken limb and then move on with life. Regardless if it's my brothers, my friends, my best friend, a doctor, a nurse who unintentionally injures me -- the ability to heal, recover, understand, and forgive are skills in life that I think everyone could learn more of. If you are my friend or family I could never get angry about accidentally fracturing because of something we were doing. The time spent with those individuals mean more to me than the hours "wasted" at the hospital getting a cast and x-rays because of the pain. Because in those moments I am able to learn. I am living.

Other suggestions on 'friendly fire' situations:

• Allow your friend/family/other individual to feel bad. They should! But also let them know that such incidents are bound to happen and little could have been done to stop it.
• Inform the other party about what the injury was, be gently honest with the facts i.e. "yeah I'll be out of commission for a few weeks but I'll heal.." 
• If you have a young child be sure to focus on how s/he could be more careful next time; don't criticize the mistake - it was a mistake/accident after all!
• Embrace the awkward moment when you and the other person realize that a fracture has occurred. Don't try to cover up the situation or pretend it didn't exist/happen
• Every minute spent healing should be a milestone spent understanding. 

As sad as it may sound, after about 100+ fractures (and for some of you maybe even less) I have been able to compare fractures. "Yeah, I think I broke my toe or something - whatever it's not a big deal. I don't really even walk anyway." How many of you have said something along those similar lines to non-OI'ers and gotten a  look of stunned disbelief? I will admit to have broken ribs or a shoulder and not gone to see my orthopedic doctor. Instead  I have grown to know how to slip in and out of my clothes when I can't raise my arm above my ear. Or I have been able to stifle coughs and sneezes, shifting to the un-injured side a bit, to dull the wincing stab of a broken rib. Recently I broke my ankle and called my doctor the same day it happened, his response was: "well can you use an old cast or splint to stable it until tomorrow?" For most other kids a broken arm can be a painfully uncomfortable 5 hour wait at the emergency room, for us familiar with the situation it's 'pull out the sling and be damn cautious.' Or we just lay in bed and pop a tylenol w/codeine pill left over from our last surgery.
Is this reckless behavior? When will OI kids begin to know 'if it's a 'big' enough fracture?' to warrant fretting parents and an hour or longer drive to the hospital? Why do OI'ers do this? Should it be discouraged?
Disclaimer: I am not advocating for kids to skip the doctor's visit if there IS a fracture regardless of how painful or not it is. This is just what I've done, and have known other OI'ers to do as well.

I remember in elementary school when fractures would occur (which was frequent), I would just stop by the nurses office and my mom or dad would bring an old splint or sling and then send me back to class. (The fact that I loved school and being there had much to do with this). The doctor's appointment would be made after school and then life would continue as normally as ever. I can't imagine what my teachers thought as this continued well into high school and schools would be paranoid with worry about liability issues. As I grew and as fractures happened I learned to be able to tell the radiologist that turning or shifting an injured area would be too painful, the memory of the pain - no matter how long ago my last fracture, could be quickly recalled and I would wince just thinking about it. Luckily I also happen to have an orthopedic doctor that takes my word before the x-ray; his attention to where I pointed to the pain even as a 4 year-old not only empowered me to know that I was in control of my own body and the O.I., but that despite his stupendous ingenious and medical degrees - he trusted me to know my own body. This is key. If it weren't for that I probably wouldn't trust myself as much, be as willing to explore and push my body to discover what I can and cannot handle. So now whenever the snap, pop, crack, and the burning swords pierce my insides I am able to breathe calmly and ask myself: is this big enough to matter? When I say "enough to matter" I mean is it necessary to call the doctor right then? His page number is ingrained in my head and listed as my emergency contact in my cell phone. Or can I trust myself to know what to do next, because I know that when I get to him he'll ask me "well, can you point to me where it hurts? And how much does it hurt?"

Other tips to gauge fracture 'seriousness':

• If you have a young child who is unable to communicate a doctor's visit is required. But even at this stage you can begin to get into a 'pain threshold' routine. Ask him or her how much it hurts, where it hurts, use the scale of 1-10, or use a pain chart with smiley and frowning faces to exemplify how much it hurts. Getting into a routine will help establish some semblance of "normalcy" or "what can I expect?" consistency despite the uncertainty of not knowing where and how much is the pain. 
• For school-aged children I would suggest letting your child's school nurse/principal/teachers/P.E. teachers know of the plan when fractures happen. (Day care personnel, baby sitters and other care takers). I know my mother was not always so keen on listening to me first when I broke something in school, it took about... 25 fractures to happen before she felt like she could listen to me. Get a signed doctor's note to "okay the plan" if necessary!
• If you have a infant who you suspect has a fracture but you are uncertain? My parents used to gently tickle me in various places, whichever limb flailed with that unique cry/scream would be the injured area. 
• Know that your child is not taking this lightly, s/he is probably not just "blowing something off." The bottom line is that fractures are painful, regardless of how large or small. At least 50% of how painful something is is dependent upon how the pain is being managed. If it has happened before our bodies have their own memories. I always seem to inherently know/remember just how to get dressed or turn in bed in the least painful way possible. (Again, this is true for me - may not be the case for everyone!)
• Even if it's NOT "big enough to matter" pain should never be taken lightly. If it is bothersome go see your doctor. Hairline fractures can be just as painful as a clean break.