Showing posts with label pain management. Show all posts

Pain, as a Thing

Let's see if I can do this without tangling myself into words and give readers a migraine. But there is a point in my fracture healing process where I no longer recognize pain as a sensation, but as a thing.

Still with me? Maybe some of you are nodding in agreement and know what I am talking about? No? Let me continue.

I don't know when I first differentiated between pain as a thing vs. pain as a sensation but one day it just happened. Since then I have come to recognize that when the pain makes this switch, things are getting better. It has become something of a benchmark to me where I now realize: Soon that throbbing will fade away completely. Soon the nights of muscle cramps will stop. Soon all I'll have to worry about are people accidentally bumping into me, and for how long I can keep my mind off the itching.

When a fracture first happens I feel everything about it. I feel where the bone has broken, when it is jostled, when my breathing has moved it even a millimeter, when there is even a slight dip in the pavement or mattress. I feel it outside and beyond the sharp burning sensation that comes with a fresh fracture. It is in the hesitating way that I breathe, the way I am sweating a waterfall of bullets, the way I have lost all focus on everything else in the world except for that crack in my bone that should not be there. Those are the sensations that let me know I am in pain. Because suddenly when it is time to be positioned on the x-ray table I have stopped breathing, because I think if I do not fill my lungs with oxygen maybe those air bubbles will not carry the sensation of pain to my brain. I am always wrong. I know I'm in pain because during those five seconds the radiologist has ducked behind his little window, I relish in the moment of temporary stillness. In my mind I am pushing those waves of ebbing pain out of my head so that I might make room to experience the sensation of calm. My body suddenly turns cold as the sweat evaporates, but then it rains down on me again when he pops out from behind his window and says, "okay so for the next picture I need to move..." Pain is when I clench my jaws so tight I think I may have broken it as my doctor wraps the cotton layers around my leg, I wince as his fingers bring the roll of padding around the injured area. I tell myself it is all for the greater good so suck it up. Those are the moments I experience pain as a sensation.

Pain as an object is something I recognize in my head. It is easy to put away into a box, package it and put it on the back burner of my mind - and hope that I may turn the stove on so hot it will just burn it all and have it disintegrate to ashes. It is more than just a pesky dull ache because someone has accidentally bumped into my leg in a cast. But it is also less than the nagging tug and shimmy of muscle spasms at 2, 3, and then 4 in the morning. Pain as an object is something that just exists like a blemish on a banana, I recognize it but shrug my shoulders because there are bigger annoyances to my day that I can at least do something about. As a thing, pain is neither obnoxious or pretentious; it doesn't really demand all the attention in the room and nor does it expect to be the darling recipient at the pity party. This is the kind of pain visitor that has so abused its stay that it has left a numbing imprint on its surroundings. No one bats an eye or so much as waves as it comes and goes. I expect its presence, but I don't say that in any kind of heroic way or in an attempt to be brave, and definitely not inspirational. I say that in the kind of way that I am telling you that I expect the grass to still be green underneath all this snow. Pain as an object is something that I don't need to go chasing around my body, I don't need to lasso it all into a single number on a scale of 1 - 10 after surgeries. Pain as an object fits in my hands like it was made for these palms, and I can manipulate it like origami from frog to koi fish.

So there they are, the two different kinds of pains in my fracture healing process. These are the things I tell myself to pass the days or weeks, they are things I scrutinize just as closely (albeit privately) as my doctor honing in on the x-rays.

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The Choices within Bone Pain

In a couple of weeks I will be another year older. I will have gone around the sun once more, and I appreciate you all for joining me in this galactic adventure! But there are some things that come with age that I am not so thrilled about, some happenings that I am taking more note of and a little freaked out by. Today I will talk about one of those getting-old-er-things:

Bone pain.

Since O.I. has much to do with the skeletal structure and there are many types of 'bone pains' associated with having O.I. - let me attempt to describe the bone aches that I am talking about.

I imagine it as the start of a dull migraine, but inside a bone as opposed to your noggin. This is the kind of bone ache that is not associated with post-operation roddings, and it is not as urgent as the bone ache associated with a fracture. This is the kind of bone ache that is like a row of perfectly hung family photos, and then there is that one that seems a little tilted to one side or the other. It is annoying, because no matter which way I might shift or move myself - I am rarely able to right things again. It is that knot in your headphones that no one ever knows how it got there; this bone pain is when you finally untangle that knot and that part of the wires lay disgruntled from a rude awakening. Other times it is like an itch that can only be scratched when you crack your knuckles, or when you wiggle your knee in that weird way that feels like it's jumping in and out of the socket. It appears cold, or suddenly hot to the touch, it can pinch, or just hang around dragging its feet along the length of our femurs till it finally shuffles off somewhere in our hips.

These bone aches are usually not detectable by x-ray or MRI, but just because they can't see it doesn't mean we can't feel it - can't know its shape and size, and exactly how to get rid of it if only we could get our fingers *in* there!

The toughest part, for me, when I have bone aches is not letting it get to my mood. The last thing I would want is to be that 20-something who gripes about the ache in my joints, or how the "rains make my wrists hurt.." It is difficult to have the patience for others, or to carry myself in an upbeat manner when I would rather float on a waterbed towards my own private island. Still, in a weird way, learning to manage the bone pain by not letting it get to me is very much a part of how I manage the pain! Distracting myself with work, or forcing myself to be even more present in the moment, and reminding myself that even with the inexplicable aches - I must choose to participate and be engaged in the everyday, because otherwise I would be more annoyed with myself, even more grumpy.

It has yet to get to the point where I resort to popping an ibuprofen and going about my day. It might also be because I do not associate *these* kinds of bone aches with the need to take medication, (I associate pain medications with post-op pains)..the point being, these are all moments that will pass. But when it does pass, will I be able to say "I took part in its passing" or will I be able to say "I watched it pass me by"?
These are not easy decisions to make, despite how frequently it may look like we make these choices. I can only hope that as I get older, there will be more instances where I can make these choices because I am the first to say that I could really use more practice.


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5 Half-Truths Children with O.I. Like to Tell

These are a few of the things I used to tell my parents or teachers so they'd get off my back. And for all the kids out there -- I really hope I'm not blowing your cover!!

5. "I'm fiiiiiine!" Every now and then we are afforded a 'free pass' to fractures. Maybe we got lucky and braced ourselves from a fall the right way, or maybe we accidentally bumped into something -- but miraculously no bones got broken! And as long as there was no sharp pain of a fracture I gave myself a clean bill of health. Arms crossed over my chest, face pouted, and I adamantly refused to allow anyone to "check to make sure.."

4. "It doesn't hurt that much." I never knew how to accurately gauge the amount of pain I was in. (I still don't!) When I was asked "on a scale of 1-10..." I never knew how the pain at 7 differed from the pain at 6 or 8. After awhile I did away with trying to figure 'just how badly it hurts' and realized that by saying "it doesn't hurt that much" I could knock off several birds with one stone! By saying this I knew that my parents wouldn't be so worried, and I also figured out that the crazy pain medication they'd give me would be a smaller dose. In other words I associated the pain with the medication, and the amount of medication was related to how long I could remain at school to goof around with my friends.

3. "I'm not tired." This is uttered out of the mouths of every child. After operations or major fractures it was expected that I would need to rest. And no matter how physically exhausted I felt I refused to sit around in bed for more than a few hours. For someone who does a lot of sitting in her wheelchair, I am quite frankly terrible at remaining in one position. I fidget a lot, I have a tendency to move around a lot, and being told to remain stationary sounds like you're punishing me. But of course after I came home from operations my parents would get me set-up in bed, and while I complained.. the second my head hit the pillow I would doze.

2. "I didn't scratch or pull the cotton out." In every cast I have ever had the cotton padding that lines the edge is always pulled out. Why? Because I itch. Because I scratch. Because I'm an impatient person who can't wait the 3 months until the thing gets taken off! Every time I go to the cast technicians they look at me knowingly, "I see you've been scratching again Sandy...there are red marks on your skin..." What can I say? If I had a dog I'd probably tell them that the dog did it.

1. "I won't get hurt, I just know it!" Somehow having O.I. also gave me the authority to be a licensed fortune teller. Whether it was jumping into the ball pit at someone's birthday party, or maybe it was trying to climb ropes in P.E., or the time I tried jumping on the trampoline, let's not forget when I sat on a roller coaster I was at least 6 inches too short for... I insisted on being allowed to do all these things because somehow I just knew nothing bad would happen. Spoiler alert: I never actually knew the outcome beforehand. I just wanted to try all of these things, but in my mind the more I confidently proclaimed getting hurt won't be a possibility - then maybe my chances of getting the green light would increase in my favor. Sometimes my persistence worked, often times it didn't... c'est la vie!






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"Go Away" & Other Things Pain Makes Us Say

No position you turn or lay on seems to make a difference. And the awkward angle at which your legs are parted in that spica cast is just.. awkward and uncomfortable. There is an itch deep down in your cast that you can't get to no matter how you bend the coat hanger; and for the millionth time NO, ANOTHER PILLOW WON'T HELP! JUST. GO. AWAY!

I am sure all of us have experienced a discomfort that was indescribable. We then begin to tunnel ourselves further into a hole because we think: no one else understands, no one else has felt this, no one else knows how to make it stop, no one wants to be around this kind of pain, no one no one no one..Until all of a sudden we are sitting by ourselves in bed, grumpy and at a loss for what to do.

This is the part where I am afraid to make another confession. But here goes: Sometimes being by myself with the pain helps me feel better. A lot better. No it's not because I am anti-social and a miserable person, I promise!

I could easily attribute this to my stubborn personality. When things get tough I have a tendency to just curl inwards and deal with problems on my own. The more other people nit-pick, nag, remind, or suggest things for me in times of high stress and pain -- the quicker I am to lash out and intentionally isolate myself. This isn't a good thing necessarily, but it is the way that I cope. It's how I manage and it's how I get back to making myself feel better.
Over the years I have tried to become more mindful of that behavior. When things are beginning to make me "hermit-ize" I take a moment to ask myself: Is this a step to making me feel better? Or am I isolating myself because I just don't want to deal with anyone else?

If it's the first reason then fine. I let people know that "It'll make me feel better to be by myself for a little while.." or I say "I'd like to get some rest alone please.." If it's the second reason I try to accept that feeling negative in times of stress and pain are natural. I tell myself there is nothing wrong with me because I want to burrow inside a hole of blankets and sheets (and possibly never come out). I then try to remind myself that this other person is most likely trying to help, and while s/he might not understand what I'm going through - I should acknowledge and appreciate their efforts in getting me through a tough time. I then assure them that thanks to their help I will be okay by myself for a bit. It's not easy to calmly think through your pain when you're in the moment, but even taking that first step of realizing your feelings when you're in that state of being will do wonders.

I suppose the point of this blog entry is to realize that everyone has their own way of coping. No way is right or wrong, but it is important that we realize everyone responds differently. For one person putting five pillows underneath a full leg cast feels like they are on top of cloud 999; for someone else it might feel like the most traumatizing sensation ever!
At the end of the day we can only be us. We can only do whatever will make us feel better, we can only hope that what we do now will make the next minutes easier for all of us.

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Nothing Else I'd Rather Be Doing

For a few seconds I believe the bed has swallowed my entire body, leaving only my eyeballs. At first I can feel nothing else, and my brain seems to still be wiping the dredges of the anesthesia off - for the time being it can only send a few bursts of signals to my eyes. All I see are the glaringly obnoxious fluorescent lights above, then the curtain divider, and then from the corner of my eyes the machines with all of its wires that are all heading in my direction.
Meanwhile the room has begun a slow counterclockwise tumble: the ceiling melts into the wall, the fluorescent lights look like they're about to fall on to me and then there it is -- the tips of my fingers brush past the top of the cast. The familiar dimpled ridge texture of the fiberglass cast sends my brain shooting down memory lane, and then it all comes back to me: a rod surgery on my left tibia.

I yak up stomach bile as I always do after operations. It's the final signal that says: okay your body is awake now. The nurse holds out a small cup of water for me as I hungrily gulp it down, like it's some kind of mirage that might disappear on me any second.
It's sometime between when I first remember what has happened and the time I am given my first sips of water that the pain hits.
"It was a long surgery, Sandy. Far longer than anyone expected. It lasted 6 hours and Dr. Shapiro had to make 4 breaks into the bones." The nurse tells me.
Still not really able to form complete thoughts yet, I make a sound that is something between a groan and a cry. My hands grasp at the fiberglass cast, fingers scratching at a leg that only that morning I had been able to touch the skin of. Now it lay in several pieces, with all kinds of hardware screwed into the bone - that thought alone made me squirm.
"Don't be afraid to push the pain button, okay?" She put a small buzzer into my right hand, the one that wasn't already swamped with I.V.'s swarming about. I nodded my head, half rolling my eyes to tell her that I already know all too well what the pain button does.

After my vitals are checked again, and a room upstairs has opened up I am rolled to the 9th floor in a room that is across from the nurse's station. It's the room I am always in after rod surgeries, a single room to myself with the border of animal decorations going around the walls. The first night after surgery is always the worst for me. The throb of pain ebbs and flows all throughout the night, the morphine makes me frantically itchy, and my dreams are a mix of lucid reality with the backdrop of pain medication. In short: I have no idea what is going on.
Several times an hour various nurses will come and check on my vitals. But the blood pressure stands that give my arm a gentle hug at midnight, then 1AM, 2AM, 3AM.. has appeared to me as various morphed alien-octopus creatures with tentacles that squeeze for a bit then get ripped off.

In the dim of the night light, and mixed with the neon glow of the machines I could tell he was wearing a large blue cookie monster t-shirt. Must be one of the perks of working at Children's Hospital I thought. Rarely do I remember anything about my stays as an inpatient, especially during the first night after an operation - but for whatever reason the guy checking my vitals that night made an impression. He was going about his business, jotting down my numbers and adjusting my oxygen mask when all of a sudden I blurted out:
"Wouldn't you rather be somewhere else?" 
He stopped what he was doing and looked down at me, smiling,
"No of course not! If I were anywhere else I wouldn't be able to help you and there's nothing else I would rather be doing." 


To this day I have no idea what spurred on my question. I don't remember what my thoughts were before I asked it, but it's pretty obvious that I wanted to be somewhere far away from the 9th floor of the Children's Hospital in-patient floor. But his response comforted me the rest of that night, I remember I slept as comfortably as I could knowing that despite my drugged and broken state of being - there was someone in the world who wanted to be there to help hold me together.

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Dear O.I.,

I know all the trash they talk about you, and believe you me, I know FAR too well what you do -- but despite all of that I'm glad we're together. Our relationship has had its fair share of bumps and fractures (hah, see what I did there?) but I've come to appreciate your quirks and learned to manage your more annoying habits.

Let's think about the first time when I, through my own self-realization, truly appreciated you. I was very young at the time, and we were still getting to know each other so it was pretty rough going between you and me. But I was sitting on the medical table in the cast room at Children's Hospital, twiddling my thumbs while I waited for my doctor to saw off yet another cast... that you were responsible for. I had spent the past couple of months relying on my parents to carry me everywhere, had spent weeks getting sponge-bathed, and was starting to get sores from having to be on my back in one place for so long. Needless to say I was more than ready to be rid of your baggage.
As with many other times I have been in the cast room, this time I was not the only patient. There was a little boy seated, or should I say squirming and wailing, on the table next to me. His parents were trying to shush him, his face was a violently furious red, and he screamed for all he was worth - twisting his face away from his broken arm. I wanted to tell him that closing his eyes wasn't going to take the pain away. I wanted to tell him that no matter how much he screamed and thrashed, it wouldn't work either, in fact moving more would just make the pain bolder. I wanted to tell him that soon it'll be all over. I wanted to tell him about patience, about healing, about getting stronger, about how in the bigger scheme of things -- his broken arm was nothing. I was probably no older than 10 but I knew these things because you had taught me all about them. In fact, these were your gifts to me and at 10 I knew that these were the things that made me different from my friends.

About that, you taught me how being different is something you adapt to instead of fighting against. You know, there are often days and nights when I think to myself that if political leaders and iron-fist world rulers could understand the things you have taught me, perhaps there wouldn't be as much struggle, hardship, strife, or anger in the world. Maybe people would want to work harder to mend, to converge, to be patient, to be stronger together, to adapt. You've taught me how to survive by adapting. Whether that's by adapting to other people's expectations of me, to the tall shelf that I can't reach, to the bank teller who never seems me, or to my friend's house that I can't get into -- you've showed me how everything is possible.
I wanted to thank you for that possibility that you continually reveal. In times like these I see so many people who have lost sight of possibility, hope, and clarity for themselves. It is a frightening and incredibly sad sight, and although I have so many amazingly supportive people in my life who help make my own possibility happen -- I believe that it all begins with you. Sure, I have to fumble and wrangle your neck a few times before you'll show me the way but it is ALWAYS so worth it!

Sometimes though, I'm not sure if you realize your scarier influences on people. Sometimes you bring a lot of fear and unknown into people's lives and I resent you for that. Aren't there better ways to prove your point? Less dark? Less of a hassle? Ways that aren't as much of a struggle for folks? Do you have any idea the fear you put into a mother who has her O.I. baby taken away because she's being investigated for child abuse? Or what about the fear of a child who isn't sure he'll be safe at school that day? Or what about the unknown for the twenty-something who isn't sure she'll ever have a 'normal' independent life outside of her parents' home? Or what about the family who isn't sure their O.I. child will live past the next day? I have seen so many of these instances play out and what makes one situation find success is strength and determination. You drag us screaming and kicking to prove what we are made of. You are unrelenting in your instructions. You give us no option but to prove the best of ourselves, but in order to do that, I understand that you must first put us in the worst case scenario. I just wish you wouldn't do that... all the time. Like, sometimes, can't you just let ME handle the remote control to life? Why does it always have to be YOU who gets to choose which channel we watch?

We can't get rid of each other. This relationship is made up of a promise more sacred than that of a vow, it'll last longer than the rust of a wedding band, and no amount of money could pay divorce lawyers to end it. So I have resolved to make the most of this -- whatever this is, whatever you are, and whatever it is you do. But after all, making the most of things is the first lesson you taught me 20 years ago when we first met, right? And just look at where it has taken us now!

With love and admiration,
Sandy




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Rodding Surgery: My first venture in "shish kabobing" bones

"We have bubble gum, cherry, watermelon, root beer, grape.." 
"Cherry." 
The anesthesiologist reminded me of Roald Dahl's The BFG. It wasn't just because I was nine and terrified that  morning of my own shadow, but he spoke to me with such kindness and calm as he wielded my "sleep mask" and the little tubes of "sleep flavors," that I half thought this was all some kind of magical realm. All I knew was that by the end of the day I would have a piece of metal in my leg, kids at school would no longer make fun of me for having two knees, my tibia would be straightened, and I might even come out of the procedure a few inches taller!

Earlier in the week my parents had gone with me to school and asked to speak with my third grade teacher and classroom aide in private. In hushed tones outside in the hall my parents explained to them that I would be missing a week of school.
"The doctor will break her leg in three pieces and put a rod through. This will help strengthen her leg, make it straighter, and help her walk better." I remember my parents were trying to find some balance between describing the surgery matter-of-factly and relaying how this would be quite the undertaking. At the time I was also out there in the hall too, but I wasn't paying attention to the grown-up talk. I was still young enough to let my parents shoulder the entire burden of my first major operation, my wheelchair was turned away from the hushed tones and I was, as usual, spacing out while looking out the window outside. It was then that my third grade teacher, Mrs. Bond (who passed away two years later) looked down at me,
"How are you doing?" 
"I'm fine." I recall saying as I looked up into her face. The operation hadn't happened yet! What did she expect me to say?
"No, you're not fine sweetie. This sounds painful!" I remember shrugging and pushing myself back inside the classroom.

I sat behind the pulled curtain in my circus animal covered hospital-distributed size S gown. The outfit also came with fuzzy blue socks with white grips on the soles, I put them on my hands and pretended that they were puppets.
"Hi, I'm here to put an 'x' on the leg that we will not be operating on. This is just to help Dr. Shapiro and it will be gone by the time you wake up okay?" She took out a felt tip marker and made a small purple 'x' on my right tibia.
"So this is the leg that the operation will be done on right? Do you know what they're going to do today?" It was the morning of The Big Day. I had woken up before the sun and driven in silence to the hospital with my dad, listening to Magic 106.7's Boston's #1 soft rock station the whole way. Suddenly I didn't feel fine and although I knew exactly what they were going to do, I couldn't get the words out. The entire procedure slipped away from me and cowered stuck somewhere in the middle of my throat.
"Have you ever had a shish kabob before? It's basically a very thin stick that you put all kinds of food like vegetables and sausages onto. You put them on the same way you toast marshmallows over a fire. That's what will happen to your tibia, this bone right here -" She then pointed at my left tibia. My second knee, as kids in school called it, was bowed to almost a right angle. It didn't hurt me unless I tried putting my braces on and the plastic piece that was supposed to go over that area never sat right.
At the time I couldn't imagine what my tibia would look like straight. My right tibia was also bowed, but not to that degree (though that would change as I gt older). Would my doctor have to stretch my skin too to make room for my longer leg? Would the rod set off metal detectors? Would my leg feel heavier with it? How much taller would I be after it was done?

"Alrighty, so today's the day right? The Big Day is here!" Dr. Shapiro, my orthopedic since birth, a bit late as usual, had shown up. He brought with him a team of other doctors and right away my mother got nervous,
"You'll be the one doing the surgery right?" I didn't think she could look any more nervous but she her skin tone went to an even brighter shade of white.
"Yes. I will be doing the actual cutting, maneuvering, and placement of the rod. These guys will be helping out and observing." Dr. Shapiro nodded and smiled at me, he was forever smiling.
"So I have the x-rays here of the actual area that we will be operating on and..." he then dove into a hodgepodge of medical terminology that zipped right by me. His voice dropped down a bit and he gestured to the team of doctors that hovered around him, their ears and eyes clinging to his every word like they were some magic spells.
"...Alright so I'm going to get changed and then the nurse will take wheel the bed into the operating room. So I will see you soon and we will keep mom and dad updated as the procedure goes on. Okay?" 
"Okay" I whispered, giving a microscopic nod. He said it with such flourish that I began to wonder exactly how many rodding surgeries he had already performed on other kids like me. I also wondered why things like confidence couldn’t be contagious; after all, there certainly seemed enough of it to go around amongst the team of doctors who stood in scrubs and hair nets.

The anesthesiologist gave me my sleeping mask just before the nurses came to roll my bed to the operating room. As we rolled down the hall and into the elevator to go to the operating floor my body went cold. I tucked my legs in towards me and my eyes darted everywhere, suddenly it didn’t matter how many times I had already been at Children’s Hospital – I didn’t know where I was, and even more so I didn’t want to be there.
“So how do you like the third grade, Sandy?” The nurse asked.
“It’s fun.”
“I read in your files that you like to read a lot and that you want to be an author when you grow up? Who’s your favorite writer?”
“Roald Dahl, I like his book Matilda.” Somewhere during the conversation about my favorite books and the adventures of Ramona the Brave we had arrived in the operating room. I don’t remember much about that first operating room other than everything in it seemed metallic.

The nurse carried me over to the operating table and introduced me to some of her other “friends who would be helping out;” smiling eyes peeked over operating masks and gloved hands waved at me; I gave a nervous smile back as I lay down. Sticky pads that would track my heart beat and other vitals were stuck onto my chest and The BFG anesthesiologist came in again, he sat near the top of my head like my dentist.
“Alright so I have your cherry flavored sleepy gas all ready. I’m going to put the mask over your mouth and nose and all you need to do is breathe normally for me okay?” It all seemed simple enough so I nodded.
Even as I write this the memories of the “sleepy gas” makes the back corners of my jaws pinch, my throat gets thick with queasiness and I have already tried swallowing the memories away about twenty times. As he placed the mask over my face a light cherry scent filled my nostrils,
“You’re doing great, just breathe in and out for me” I did for a few breaths and then my world seemed to get sucked into a vacuum that spun at the same time as I felt like I was sinking away.
“I’m going to turn the machine on now and the cherry will get stronger - it will make you feel very tired and sleepy, but don’t try to fight it okay?” His large eyes searched my face letting me know that this sci-fi vortex that I thought I was flying through was perfectly safe. The buzzing noise suddenly felt fuzzy to me, was it even possible for sounds to feel fuzzy? I felt light headed, and soon couldn’t feel the rest of my body, the nurse on the other side who was gently rubbing my arm, or the mask on my face – it was like the only parts of me that existed were the breaths I was taking.
“…you’re doing great Sandy..”

I woke up incredibly thirsty. My parents were sitting in chairs covered in blankets next to where I lay and all I mustered a very dry and groggy, “water..”
“The nurse says you need to drink this slowly and in small amounts, okay? I will help you.” My mother approached me with a cup of water that had an extremely long bendy straw dangling from it; I nudged my head and chin towards it and, of course, didn’t listen to anything my mom had just said. Never had water tasted so good! It was like my life was being restored with each gulp I sucked down, I drank like I had just run a marathon!
“Slowly!” Then my mom figured out that she could pinch the straw between her fingers and drastically decreased not only the amount of water I was inhaling but the pace as well. From out of nowhere though my stomach didn’t like the waterfall that I had just ambushed it with, I vomited. Water came hurling back up my throat like raucous ocean waves in a storm and splattered on the floor; as the nurses came hurrying in to clean up the mess I turned my head to the other side and went back to sleep feeling much more satisfied.
Then I woke up for the second time. This time when I woke up Dr. Shapiro was in the room and seemed to be discussing two x-rays while talking to my parents. This time around I also noticed the weight of the light blue cast on my left leg. I also felt the slow groggy awakening of the pain in my leg as well; confused and out of sorts I began to cry.
“Oh you’re awake! The surgery went well, and if you’re feeling some discomfort there is a button that you can press. It sends the pain medication into your IV” Dr. Shapiro told me. I reached over to the small button and pressed it several times in frantic repetition, for the remainder of that first day the button never left my hand.
--

So, that’s the story of my first rodding operation. The operation went well and my tibia was broken into three pieces, as I was explained later on. Two years later I grew and that first rod actually migrated from the surgical area and out of my skin! It would not be until I was in my senior year of high school that I would have another rod surgery, that time it would be for my right tibia. And then four years later during my senior year of college (shortly after graduation), they would need to fix the rod in my right tibia – replacing it with a new rod, a metal plate, screws, and some bone paste. 

Shish Kabobing Bones: 
There are a bunch of details I left out in my re-telling of my first operation in an attempt to keep it to the essentials. But in this section I will tell you about the silver linings that made helped my first operation along -- 
  • The day before the operation my parents allowed me to eat all my favorite foods. For the 9 year old me that included: white rice & ketchup, pizza, string cheese, Gusher snacks, fruit roll up, and endless glasses of milk. It also helped that my operation was very early in the morning, this way I didn't have to go hungry for too long until my operation
  • My day-to-day routine didn't change during the days leading up to the operation. I still went to school, hung out with my friends, still had my music lessons etc. It helped my psychological calm about managing my first big operation. This isn't to say that my parents didn't still talk to me about what would happen, or I didn't ask them a hundred questions, but the general consensus was that life would continue before and after the operation
  • Weeks before the operation my parents had made appointments with a physical therapist. She specialized in post-op assistance and arranged for me to have rent a reclining wheelchair, and other adaptive equipment that would help me during my time rehabbing with a huge cast on my leg. After the operation she came to my hospital room and showed my parents how to help transfer me to my wheelchair, to the toilet, and talked about different ways to help me in the shower
  • I was fortunate enough to have my grandparents live not far from Children's Hospital; this way during the day when my parents had to take care of my older brother (send him off to school and his own activities), they came and stayed with me. Then at night my parents would come back and one of them one sleep with in the room with me
  • Because many OI'ers have issues with their lung capacity, its important to keep monitoring this part of you before and after the operation. I remember needing to go through a battery of tests before the operation with my pulmonary doctor to ensure that I was clear to go under anesthesia. After the operation there was a doctor who would do breathing exercises with me, and help me to ween off the oxygen mask that my lungs had become dependent on during the long operation
  • Staying in the hospital over night is tough. For whatever reason pain is always worse at this time, nurses keep waking you to take your vitals, and you can never get into a comfortable enough position. What helped me get through the night was actually being as active as I could during the day. I would try not to nap, play video games in the play room, hang out with the hospital volunteers, or read the Get Well cards my classmates sent to me. This way by the time night fall did arrive my healing body would be exhausted and I would just pass out

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Telling Future Fractures

The thing is I haven't even told this to my own family yet. My parents and my friends don't even know about this. Mostly it's because I'm afraid of the reaction I might get; I feel as though if I told them this the stunned reaction and disbelief I might get in response will be too big of a bridge for me to cross. Even the slightest bit of hope that may result from them knowing this might be too much for me, too much for them. Okay, so here goes: sometimes I am able to tell when a fracture will happen. There, I said it. 
Part of the frustration with having OI is that fractures occur so unexpectedly. But imagine the slightest relief we and our families could have if we KNEW ahead of time when a break would occur. Maybe we could be more careful that day? Perhaps we could call the doctor in advance? Prepare the necessary splints or slings? Brace ourselves for the pain that we will experience? But would anything change? No. Would the fracture still happen? Yes. I guess these last two questions are why I have kept this observation to myself. What difference would it make if I knew or didn't know? But figuring out those questions is an individual decision, a personal journey. What I really wanted to write about was HOW I know something bad will happen. 

It's the bone pain that clues me in. It's a different bone pain from having spent a day doing too much physical activity, or the slow dull pain that comes with a rainy day. That kind of bone pain kinda hangs around inside of me, hopping from one corner of my body to the next - just reminding me that pain once in awhile is a symptom of OI, that at times it's okay to spend an afternoon laying in bed playing games on my iPod. But the OTHER kind of pain, the kind that I can pin point to the moment a break is just about to happen - that's a totally different creature all by itself. 
For me that pain usually starts and hangs around in the same area for the entire day, or at least until the fracture finally happens. I imagine it to be like the moments before a branch finally loses the battle against a blustery wind, it'll curve and try its best to boomerang back, but it'll lose despite its noble efforts. The most annoying thing about this kind of pain isn't that it hurts necessarily, it's that I'll be conscious that it's there for the entire time. If I could describe the pain in terms of a universal experience, I guess it is similar to the pinch or puncture of a needle into your arm when you're getting a shot. Except transfer that pinch internally, put it inside of you for an entire day, lay it on top of your arm, your femur, or lower leg.

It took me a good number of fractures before I figured out the correlation between experiencing that pain and when a break would occur. At first I didn't want to believe it. And then I told myself that it was just a coincidence. But when it happened more than a few times I just kept it to myself, like holding a friend's surprise birthday party on the tip of my tongue until the big reveal occurs. The fractures would happen like any of my other fractures happen, nothing out of the ordinary or different about them. For the fleeting few seconds when my mind manages to get distracted from that pinch inside of me, that's when the break will sneak up and snap me back to its attention. Remind me: hey, I'm the real priority here. Pay attention to me! And then for a few hours I will, I'll go through the routine that my family, friends, and I know all too well. But when everything is all bandaged up, and as I'm lying there waiting for the fiber glass cast to dry and I think alright body - maybe you've won this time...I let myself accept the fracture, understand that it was bound to happen and then pick up and move along. I race on to the next experience in life before the next pinch gets there before me. 

Forecasting Fractures:
  • I'm not so sure that there are any suggestions I can offer here that would be different from managing any other fracture. Like I mentioned above, these hunches are only about 45% accurate for me, and they might not be true for every person with OI
  • One thing that I AM thankful for though is that instead of spending an entire day in my room when the pinch occurs I go about my routine as normally as possible. I might not be as active that day but I refuse to let anyone else in on the secret my body and I share. It's a communication that I protect to the best of my abilities.
  • When I do get these hunches though, I will admit that when the fracture occurs I am more "mentally prepared." It's like if you were at the doctor's and they stick you with a needle before telling you it would be more shocking and painful for you than if they said "1, 2, 3, and..." If there's any 'bright side' to this situation it's that I am ready for the inevitable. 
  • If you're a parent or a friend of someone with OI, know that somethings will be difficult for the person to explain. And maybe we won't want to explain because we're afraid you might not understand, or that you'll totally become unnecessarily worried. We KNOW and trust that you do love us, and that you want to take the best care of us as possible - but when these secrets are kept from you, know that it's not out of selfishness or stubbornness. It's just that somethings are hard to grapple, and it may take years or decades before it will surface on its own. 
  • I continue on.

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Fracture via Friendly Fire?

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. 
My father hoisted me out of the crib and I began to cry. He lay me down on my parents' bed and I grabbed my leg where I could already feel the skin heating up. The sharp ache mixed with a dash of numbness began to creep down my ankle and towards my toes. I looked up at my dad as he held an old splint in one hand and the phone, ready to call my orthopedic doctor in the other. I turned my head and saw that my baby brother was looking curiously at me through the bars of the crib, suddenly he began to cry and at that moment I stopped my tears. I knew that no matter what happened I didn't want him to feel badly. 

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Is It Big Enough to Matter?

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. 
Her mouth thinned into a quivering line when she saw me come home from the hospital with a cast on my lower leg. "Oh no, so it was broken??!"
She knelt down and looked up at me, she put her hand to the side of her face and it seemed as if she could rest all of her worries in the palm of her hand. I wished that she could. The ends of her oval eyes seemed to sharpen more every time she is about to cry. I looked away from her face, at the ground, and then at my fresh cast. My leg had been bothering me for a few days but I had put off going to see the doctor until finals were done.
"It's fine mom, not a big deal. I'm just in it for 3 weeks and then I go back and see him again. It doesn't hurt anymore, it's over." I went into the house hoping that my reassurances could take a few years of worry from her face.   

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