Special Delivery

This is what it looks like when I get new supplies for my dressing changes/pin site care.

My home nurse visits me every other Thursday. Although she keeps an eye on my pin sites, she primarily comes so that we can keep ordering supplies. With a little bit of common sense and the nursing education I have so far, I know enough to determine whether I can wait to see my surgeon  until a scheduled appointment or need to see a doctor asap. I can call my home nurse at any time in between visits if I have any concerns. Bu back to my main point - supplies.

My nurse comes every two weeks and asks me which supplies I am running out of. Typically I am only low on two or three things, but by the end of last week I was pretty much out of everything so we were able to do one big order of stuff. Generally, if I am only low on one item we try to make do with what we have for a while longer; we are only allowed to order supplies every two weeks so it doesn't make much sense to waste that order on one item if we know I will need several more items a week later. It also doesn't make much sense to send in an order for individual items because that requires time and a bunch of paperwork. We don't want to cause more work then necessary. So if I am am running low on something like small sterile sponges, we try to make due with the large ones. This is what we had been doing for the last two weeks.

But by the end of last week it was pretty evident that I really needed more supplies - I was completely out of sterile woven sponges, small sterile non-woven sponges, and non-sterile gauze. On top of that, I was down to one suture kit (for the scissors) and a few more days' worth of large sterile non-woven sponges. The only things I had were lots of were cotton tipped applicators, sterile water, and medical tape. That does not get me far when I need to do a dressing change. After all, you can't do a dressing change without the dressing!

When you are refereed for home care and meet your nurse (or one of your nurses) for the first time, you get to choose how you would like your supplies to be delivered. You can either get them delivered to your door, which I had done in 2012 and again when living in Hamilton last year, or to a pick-up location located within a pharmacy. Given that there is a pick-up location right down the street from where I live, mum and I opted to have the supplies dropped of there.

Now that I think about it, I wonder if you only get supplies dropped off at home if you are receiving IV medication. This was the case for me in 2012 and over the course of the summer. In 2012 I was in IV tazobactam and last summer I was n IV vancomycin. I don't think I actually got a choice when I started getting home care after the ex fix surgery.

It always feels a little bit like Christmas when I get a big box like this! This might seem strange, but when you rely on this stuff to keep you healthy and infection free it does become somewhat of a big deal. And who doesn't like delving into a box of free, albeit medical, stuff?

On a final note, I was surprised to find cotton tipped applicators in the box. I haven't asked to have these ordered since the start of December. The nurse I had then, who we actually really liked, only ordered fourteen packs every two weeks. I need at least two packs a day, so fourteen per fortnight wasn't going to cut it. Instead of arguing about it, mum went online and bought a good thousand of them (which amounts to two-thousand applicators, two per pack). We didn't mind paying for this out of pocket since so much has been paid through OHIP. Around fifty-five bucks is worth what feels like an endless supply of applicators and the peace of mind that comes from knowing you can use as many as you want or need to. I have almost used three-hundred packs so far (six hundred applicators) so my stash of them is still pretty huge, and I hadn't mentioned them at all to the home nurse, but there they are, in the box!

Now that my hoard of medical supplies has been replenished, I am happy as can be XD

#ThingsOnlySickPeopleUnderstand

And we do it again...

That time of the week.

I take everything in the bottles, including hydromorph contin, septra, and gabapentin to name a few, on a daily basis.
The pills in the boxes, like dimenhydrinate for nausea, are taken as needed. These things are not used on a daily basis but generally at least once a week.
And then there is other stuff that I take less often and not pictured here. This includes the hydromorphone I use for breakthrough pain. I try to avoid that at all costs. Sometimes ten or fifteen minutes of pain and a grin and bear it attitude are better than the side effects of the pain meds.
And there we have it. Another week down; plenty more to come.

Normal

I have just finished making plans with a friend to get together next week Wednesday. For her privacy I will refer to her as S., instead of her actual name. S. and I became friends while we were in university - we met through a history course we were both taking. I am incredibly excited to see her; we haven't been able to get together since before I got really sick last summer. Being with someone my own age will add a bit of normalcy to my life.

So many of my friends, or at least people who I thought were my friends, dropped out of my life when I became ill. Losing a friend always hurts, but loosing multiple friends at once is an extra harsh blow, especially when added to an already tough situation like the one caused by my health problems. S. and B., who I have also been friends with for years (We met at the start of high school back in 2006), were the only two people who continued to text me, visit, message me on Facebook, etc., throughout the years despite my medical issues. I count both of them as my best friends. As long as I can remember, my mum has always told me that we are fortunate if we have one or two good friends. This is a sentiment I have heard repeated by many other people throughout my life, and I think that it is true. It is not the number of friends that you have that matters, but the quality of your friendships. This is not to say that it didn't hurt when the people who I thought were my friends fell away when I became sick, because it did. I had invested in those relationships and thought that my friends had done the same, but obviously I was more a friend of convenience to them then anything else; when we no longer saw each other every day at school, I somehow ceased to exist, even if I would reach out and try to contact people. Anyways. I am very fortunate that S. and B. are my friends. And I do believe that they are my best friends - we can lose contact for long periods, sometimes even months at a time, but when we do finally meet up again it is like no time has passed at all and the friendship is as strong as ever.

So S. is coming over to my place next week. She is putting in a lot of effort to come see me, coming over from another city which requires several buses to do. I want to think of something I can give her to thank her for making that effort. Yes, yes of course this is something friends just do and if I could walk, I would be more than ready to make the trip up to where see lives. But the reality is that I can't, and even if I would do the same for her, I still really appreciate that she is making the effort to see me now. I know that loves tea, so perhaps I can get her some Pickwick tea from the Dutch store down the street. This is a brand of tea you can't buy in the shops in Canada, so hopefully it will be a nice surprise =)

Being around friends and other young people during this difficult time is really important for me. There is so much in my life that is not normal at the moment. I am doing things that older people do, things my friends won't have to do for a very long time if ever at all. These are things like using a walker or wheelchair, having surgery, blood work, doctor's appointments, limited mobility, pain and difficulty with household chores. The list could go on. On top of that, I am not doing what people my age do typically do - post-secondary education, graduating, job search, working, dating, marriage, buying houses, road trips, hanging out, etcetera. My world is very limited right now; not very much happens in my life besides physiotherapy, home visits from my nurse and doctor's appointments; I can't go very far because using crutches is tiring and dangerous outside in the winter, plus issues with pain and being able to get comfortable. So while seeing a friend may be the same old thing for most other young people and just part of everyday normal life for them, it is so much more for me. It is an opportunity to be normal, a normal I don't normally have. I cherish that!

The funny thing is that is not just having a friend come over that makes me feel happy and feel normal - sitting here tonight texting back and forth as we makes plans has the same effect - I feel light, airy, alive... happy . I am doing what a young person does. No, I am not going out on a Friday night like some young people do, but just like my brother, who is young (twenty-four) and healthy, is relaxing at home tonight texting his friends, I have someone to text with too. My other friend, B., and I have also been texting a bit over the last few days. She has knitted me a hat and would like to hang out sometime. Yes please! Hanging out with friends is always fun, but it is extra fun when your physical limitations prevent you from getting out very often and your life is filled with medical stuff. I am not sure exactly when I will see B. yet, but I am as excited to see her as I am to see S.

That last little blurb about feeling happy around friends is significant (not that the rest of this post is not). Aside from wanting to feel normal and hang out with my friends, I need to be happy. Don't get me wrong or make any assumptions here - I am not unhappy. On the contrary, I am often quite cheerful and upbeat. The people around me think that I have been handling this entire situation quite well and often tell me how positive I am, how great my attitude is, and amazing it is that I am always smiling.  But I cannot deny that my leg situation is not starting to affect me. This past week has been very difficult for me - a lot of tears, sadness, and grumpiness. There have been more of these things this week than there likely have been since surgery in August. While it is important to stay positive, it is equally important to express your feelings instead of bottling them up inside. The weight of the situation is finally sinking in and the prospect of the months to come (at least two more with the external fixator), more surgery, and then having to literally learn to walk again in combination with the knowledge of how long I have been doing this and how much I have been through already has gotten to me a bit. So not only will seeing my friends help me feel normal and have fun, doing also will also help me be happy and keep cheerful as I continue the process towards walking again. It gives me something to look forward to during a process with no specific end.

There wasn't really anything particularly fixator related in this post that I wanted to say. Instead, I wanted to share with you the other, non-medical side of things. There is more to my situation than simple re-growing my tibia, external fixators, appointments and surgeries. There is a human being who is vulnerable and lonely; a person who is as alive as she was a year ago but currently can't do anything with that life. I am still the same person that I was before the relapse; the relapse and all the things that followed did not change my needs and desires. I still want (and need) a sense of normal, control in my life, happiness and fun in the same way that you do. That doesn't change simply because I am facing medical hurdles. Because of my good friends S. and B., I am able to have these things again for a little bit, and that makes me both incredibly blessed and happy.

Long Overdue Update #2

I had my second appointment of the year with my orthopedic surgeon on Friday, February 5th. As you may recall from my previous post, my surgeon had increased the amount of time in-between my appointments. This was both a blessing and the source of some anxiety. While making the drive up to Hamilton less often, especially in the winter (Canada and all that snow.!) and being on crutches is a good thing, more time in between visits is not exactly favorable when you are waiting to hear if your body parts are re-growing nicely. By the time the three week mark came around, I was starting to get pretty antsy. I didn't just want to know how my leg was doing. I needed to know. While logic and reasoning, plus my previous x-rays and the words of my surgeon tell me that my bone, or at least the precursor to that is growing, it is slightly implausible when you are sitting at home with a metal contraption screwed to your body, adjusting a tiny knob on the frame with a wrench twice a day thinking "will doing this really result in bone growth?" So you can imagine that I was quite ready to get some new x-rays by the time my appointment came along.

So, without further ado, here are my latest x-rays!

As you can see, things are moving along nicely!
The fixator itself is still working properly, moving the loose chunk of bone downwards and, more importantly, there is a nice white cloud forming at the top end of by tibia (or at least what is left of it!), just below my knee. If you look closely, we can make out a tiny white line around the edges of the empty space. These lines trace how the loose chunk of bone move downwards. They are the edges of my new bone! This does mean that the overall outline of the bone will not be nice and straight and smooth, but this is okay; the bone will remodel itself over time. What is important is that the entire bone in general will be straight which, thanks to the IM nail, will be the case!

Before I get to the next bit, it is important to understand that growing bone and the whole distraction osteogenesis/lengthening progressive process is, well, a process. It is not something that happens overnight and it is not something that is an exact science. While the concept is the same for everyone, each person's body grows and heals at a certain rate. This means that it is very difficult for doctor's to give precise dates or determine when certain medical procedures need to and therefore will occur.

When I started adjusting my fixator, my surgeon said it should take about ninety-five days to regrow the missing 6.5 cm/66 mm of my tibia. I did not know if this included time to turn the slack out of the frame before things would actually start moving. It was, however, easy to do the math. With 6.5 cm/65mm to regrow and a growth rate of 0.75mm a day, it would technically take 87 days to regrow my bone. The 95 days my surgeon quoted minus 87 days of growth means there are 8 days of turning out the slack. I started turning on December. Dec. 3 plus eight days of turning (including the third) puts us at Dec. 10th. Then add the number of days between then and my appointment on Feb. 5th. We get 55 days. 55 days times 0.75 mm would equal just less than 42mm or 4.2 cm of bone growth. According to this, and given the fact that I need to regrow 6.5 cm or 65mm, I should be two thirds of the way done. Looking at my x-rays, however, it is clear that at the time I had not gown 4.2cm of bone. If I had, the gap at the top of my leg would have been twice as big as the gap at the bottom, which it is not. My surgeon believes I have about another 3cm/30mm left to grow, which means we have only grown 3.5cm/35mm instead of 4.2 cm. Don't get me wrong here - I say only 3.5 and that makes it sound like I am displeased or that 3.5cm of bone growth isn't something to be proud of. But I am and it is. What it does mean, however, is that the rate at which I am adjusting my fixator is not the rate at which my tibia is actually re-growing itself. Why is this? I am not sure. My surgeon did not offer an explanation. What I do know though it that he is extremely pleased with what he sees so far. And if he is happy, I am happy.

Given the rough estimation my surgeon gave me (3cm/30mm more to go) after roughly calibrating the x-rays (drawing lines between the gap at the bottom og my leg and the ruler placed beside my leg in the x-ray), he thinks I have about 40 more days of lengthening/adjustments to go. 30mm times 0.75mm per day = 40 days. This however, assumes that the fixator is allowing for 0.75mm of bone growth per day, which given the latest x-rays, it probably isn't quite doing. So, when will I actually be done adjusting my fixator? I don't actually know. Given  1) the originally information I was given, and under the assumption that is would take 8 days to turn out the slack and 87 to regrow the bone, I would have been done turning on March 6th 2) what my surgeon told me at this appointment, I will be done turning on March 16th or 3) the possibility that the lengthening is not going at a rate of 0.75mm a day, it could take longer than March 16th (on the other hand, I think I might have a bit less then 3cm to grow, despite my surgeon's rough estimate, so depending on how fast the bone grows longer, it could be done a bit before March 16th).

That is a lot of numbers, math and possibilities. Confused yet? I know that I am. What I can say for sure is that I am pleased with how things are going and that the process is done whenever it is done, whenever that might be. If the last decade has taught me anything, is that orthopedic problems take a lot of time to fix and therefore a whole lot of patience. That is what is required of me now. I came into this appointment hoping for two things. First, I wanted to see that the fixator had continued to move the chunk of bone downwards and that the cloud in between that space on the previous x-rays continued to grow and become more dense. Second, I wanted my surgeon to be happy with what he saw. Both of these things happened at this appointment, and for that I am extremely grateful. If the fixator lengthening process is not going as fast as I thought it would have, that is okay and I am not going to complain about it or mope when the news I got is actually very good. No use that complaining that lemonade is sour! It is what it is. I didn't go to see amazing things; I went to get confirmation that my body was still doing what it needs to do to get well, and that is exactly what I found out. No disappointments. This is a process and there is no point getting upset about how fast or quickly it goes, because my attitude about it won't change it anyways. On top of all that, the final adjustments do not mark the end of my time with the fixator. I do not merely have a matter of weeks before the ex fix comes off. Rather, once the adjustments are made and the two ends of bone meet at the bottom of my leg, the whole frame is compressed to help the bone heal. This will likely be the most difficult part of the entire process - both pain and worry wise. Compressing the bone will hurt way more than lengthening it; this will be the time we hope and pray that the ends of the bone successfully knit together, otherwise a bone graft may be needed. Once the compression stage, which will last two weeks, is done surgery itself has to be scheduled. That will likely place surgery about a month after the compression ends. So at the time that I got this news, I was still looking at almost three months with the ex fix - not a mere matter of weeks. My attitude has been "this is what my life is like now and what it will be like for the foreseeable future, no use worrying about things that won't happen for months or getting upset about one smaller part of this entire process". This is not to say that I don't worry, because I have lots of worries, but the reality is that I can't do anything about it anyways. And as Corrie ten Boom says "Worry does not empty tomorrow of its sorrow, it empties today of its strength".

On another note regarding my leg situation, as I adjust my fixator the pins are supposed to track neatly through the skin. For about a week and a half or so, the bottom top pin had not been tracking properly. I let my surgeon have a look at it and he was able to explain what is going on. With normal skin, the pins do track neatly through the skin. On my leg, however, there is a horizontal scar, maybe two centimeters long, where the bone pierced through the skin when I first broke my leg all those years ago. Pins do not track neatly through scar tissues - the scar tissue resists this because it cannot move as freely as healthy skin/tissue. As a result, as the pin moved closer to the scar, the skin started to bunch up between the scar and the pin, instead of tearing as it should. As the skin bunched up more and more (which makes sense because the pin kept tracking despite the skin not tearing), it started forcing the scar downwards so that it became crooked. The surgeon said that if it doesn't resolve itself in two weeks to come back and he would numb the area and make an incision to help the pin track properly. Obviously we all hoped that didn't need to happen. But even if it does, here is why my surgeon is amazing. Because I have an external fixator and how hard core and serious those things are, I can come to the fracture clinic at any time, even without an appointment, to see either him or one of his residents. If the skin indeed does not track properly, I was told to come back two weeks later, on a Thursday. This is a day my surgeon does a lot of surgeries. Not only can I show up on that day and expect to be seen, my surgeon will actually come down between surgeries and take the time to numb the area around my troublesome pin and make the incision. He said this would only take about ten minutes, but the fact that he is willing to do that is absolutely amazing. Not many surgeons would be willing to do that in between surgeries.

And finally, my pain medication was increased. Over the previous week I was beginning to experience quite a bit more pain, particularly at night. At the time I was on 3mg of hydromorph contin every twelve hours (8 am and 8 pm). My surgeon decided to up the dose at night to 6mg. This allows for more pain relief at night while simultaneously preventing me from being to groggy in to the day time. So far the increase at night has been working well.

After the appointment mum and I went to IKEA. You must be thinking we go there quite  bit by now. We actually don't buy stuff very often (although after Christmas I did get some nice ornaments for next to nothing and some pots and pans for 5$ each in the As Is section). We mainly go to de-stress after appointments and to grab a bite to eat before we make the drive back home. After the appointment I was ridiculously tired. My mum thought I was going to fall asleep at the cafeteria at IKEA. I ddin't even eat the piece of cake I got!

In the meantime, my next appointment was scheduled for March 4th, exactly four weeks later. Fingers crossed I am better able to cope with a four week gape between appointments after last time. For now everything in fixator land is going well. I just need to have faith in my body. Grow bone, grow!

Up to my last appointment, that is pretty much it. Congratulations if you made it through the whole post. I know that it was a long one! Besides a few little things I want to talk about, I am no caught up on medical stuff.

PS. Here are a few close ups my mum took of the x-rays when the where pulled up on the computer screen in the fracture clinic. Mum and I found the zoom button on the screen, so we tried to get a really could image of the new cartilage/soon to be bone.

Long Overdue Update #1

As is typical of me, I haven't posted anything about doctor's appointments in a while. A quick search of my previous blog posts puts the last real update just before Christmas, with that tiny little blurb about an echocardiogram looking good stuck in at the very end of December. Two months seems like a long time ago. So much has changed, but then so much hasn't - odd how time works like that. Anyways, that's just me getting side tracked. Back to the point - medical stuff.

The first appointment I had in the new year was with my infectious disease specialist on January fifth. The appointment did not go as hoped. Like the previous appointment, I was first seen by a student - the same one my ID specialist has had since I saw her in September. I did not like the student either time, especially not in November (post can be found here) and that certainly didn't change this time around. In fact, I can say with confidence that every time I see that student I like her less. It is clear that she does not read up on my file or have any knowledge about bone infections and external fixators and that she lacks the compassion and empathy necessary that a doctor, especially one working at a children's hospital, should have. I do not say this lightly but as someone who has been dealing with doctors and other medical professionals for the last decade. I generally prefer to see the good in people and as a nursing student myself recognize how nervousness and inexperience can influence a student in any medical profession. As a result of my personal experiences, however, I can generally tell when a doctor doesn't actually care or puts on a the fake "I do care about you" act. The whole appointment with her went horribly and certainly did not improve when my actual doctor appeared. Apparently I have now become a teaching opportunity thanks to the relapsed bone infection last year and the spiffy little fixator I have been sporting these last three months rather than an actual patient. Gone are the days that I admired my doctor and thought she was the greatest, most compassionate, smartest and best suited to treat me doctor that I have ever had. I am not saying that she is not a good doctor, because she is, but the wonderful doctor-patient relationship that we had is gone (this changed when she gained an important promotion in the hospital) and, quite frankly, despite how brilliant she may be, looking back there are several things I think she should have done quite differently, things that could have saved me months of being ill - I am pretty angry about this. If the infection ever does come back I will definitely, without a doubt be asking for a referral to a new infectious disease specialist. Even talking about it, as I am now, still upsets me... While the student bothers me, it is what I feel my doctor failed to do and what my doctor admitted that she didn't do that gets me the most upset. And then for my appointment to be used as a teaching tool rather than an opportunity to see how I am doing just adds insult to injury.  I am a person, not just an interesting case! Anyways, the whole appointment was a giant waste of time. Given the care I received in the past, the whole thing was disappointing. We, mum and I, were basically told that I should stay on my antibiotics while the external fixator is on and come back, something we already knew prior to surgery in November, and come back in four months. The only beneficial part of the appointment was getting blood work done (although thinking about it, that could have been done where I live - saving mum and I the hour drive up). The only pleasant things were the chat I had with the phlebotomist (person who takes blood) and the trip to IKEA that followed. And no more shall be said about it other than I really don't want to go back in April because the whole thing just makes me incredibly sad, disappointed and upset.

The following Friday, January eighth, I had an appointment at the fracture clinic with my orthopedic surgeon. The appointment, a follow up to the one on December eighteenth, went well. I really like my orthopedic surgeon. Off all of the ones I have seen in the past decade, which has been quite a few, he is the best I ever had. He is professional and a truly skilled orthopedic surgeon, but he also has a great bedside manner and knows how to be positive and encouraging even in a difficult situation. IF my infection ever comes back, I will definitely go back to him. My surgeon was happy with how my x-rays looked and said there is nothing more to do at the moment than to continue doing "the turns" and letting my bone regrow. I did ask him when I would be able to start putting some weight on my leg. I asked this more out of curiosity than anything else (I have no intention of putting weight on my leg at the moment.. at least not while it has giant pins sticking out of it!). He said given the IM nail holding everything together and how sturdy the fixator is on top of that, I could probably put weight on my leg but he doesn't want me to risk it. The last thing we want is for something to go wrong because I stood on my leg a bit too soon, thus messing the whole four plus month external fixation bone growing process up. So he said to put any thoughts of walking completely out of my head XD No worries - that is easily done!

Here are the x-rays I had taken before I saw my surgeon.

Side view

Front view

Several close ups of the previous two x-rays. If you look closely, you can see the new cartilage, which will slowly turn into bone over the next six to nine months, in these images. Grow bone, grow!

In case you can't see it (kind of tricky on a  picture of an x-ray), I circled the visible area of cartilage growth from the previous image. That tiny white cloud is going to be bone, my new tibia!

This was a great way to end the week (and definitely a much better use of my time than the appointment with infectious disease three days earlier). Before I got my external fixator my surgeon said he gets patients into the fracture clinic quite a bit at first because it is important for them to actually see what is going on within their bodies. In this instance, seeing actually is believing; reassuring for sure! Since surgery in November, my appointments had never been more than three weeks apart, but my surgeon said he would spare me the extra driving and the radiation from all these x-rays by bumping the time between appointments to four weeks. Now the process was going, it was a matter of wait and see over the long term rather than a "we need to constantly monitor this" kind of thing.

And the cherry on top - the bed sheets I wanted at IKEA that were not in stock three days earlier when I saw infectious disease specialist where available on the Friday when I say my surgeon, so mum and I stopped to buy them XD But I already posted about those... apparently I can post in a timely manner when i really really want to! Ha!

An Ordinary Day

Today is the twenty-second of February, twenty-sixteen. It is an ordinary, uninteresting, drab winter day. Today is in fact a Monday, greeted by moaning, groaning, rolling over for five more minutes sleep, cursing as the blaring of that darned alarm clock pulls you from your slumber once again and hitting the snooze button way more times than you ought to; berating yourself for staying up so late Sunday night, regretting all the things you didn't get done on your days off. There is the scramble to get dressed in the cold, fumbling to put on socks as the chill of the floor seeps through your bear feet and floods into your body, a hurried breakfast, a quick splash of water in the face and a hurried comb through the hair, madly dashing about to gather your school or work supplies and a full on sprint out the door to make it on time to wherever you need but most likely don't want to be today. That and lots and lots of coffee. Today is an ordinary day.

Of course calling to day ordinary is a little bit harsh and somewhat misleading. Every day is both ordinary and special, unique, in its own way. The routine might be the same, the work the same, the commute, prepackaged lunch, bagel and mocha frappe latter something that always tastes like an exact carbon match from some national coffee shop. But there are also the little things, even the minute details - the friendly handsome guy you see on the bus each morning who spared an extra fifty cents for the elderly lady short on her bus fair, an old colleague you bump into for the first time in years, getting an unexpected but much welcomed grade on a school project, hearing the birds chirp in the park when the frosty air melts away after a harsh winter storm. The list could go on - little things, simple things, the things that make life pleasant and good.

And for some people, this Monday is a truly exceptional day - people finding out that they got their ideal job, getting married, having children, receiving the positive medical news they have been waiting to hear for months, buying a first house, leaving on a dream vacation. The list goes on and on. There are happy, smiling, joyful people.

My Monday is an ordinary Monday too, just like yours. The same routine - sleeping late, computer games, reading books, colouring, taking pills, doing my "turns", pin site care. My Monday might be different than yours, filled with medical things and health worries, but it is my ordinary, the same as yesterday and they day before that and... I could go on.

But today is not just ordinary. Today is February twenty-second, twenty sixteen; this day marks ten years since I broke my leg. It is difficult to believe how something as simple, so easily treated as a broken leg could have turned into a decade long ordeal. Yes, ten years for one broken tibia. Sometimes it doesn't seem fair, but then life is not fair... It feels surreal to be sitting here now thinking about the same things I did ten years ago - healing bones, walking, crutches chaffing, pain medication. And it is odder still to actually say "it is now ten years". For the last six months, if not several more, I have been saying "almost a decade now, almost ten years," but now it is actually here and it is so unreal. It hurts to say. It makes me want to scream and cry and curse. It makes me want to be held like a child, comforted, safe with warm, loving arms wrapped around me. Today my mother told me she is proud of me. This is a thing every child wants to hear, but I do not know what to say, to think. How can I be proud of something that has become ordinary? Surgeries, external fixators, pin sites, dressing changes, physiotherapy, doctor's appointments, x-rays, high hopes and anxiety at the thought of what could go wrong.

It is all ordinary and yet I couldn't shake the thought of the significance of the date throughout the day. Yes, today is just another day, regular, normal (for me), the same as usual, but in the grander scheme of things, at least for my life, today's date was important. I won't call it a milestone, because that alludes to something good, beautiful, and achievement, well, achieved, a success. But it was some kind of a marker. Not many people can say that they dealt with a broken leg and all its consequences for ten whole years But here we are, I can. And it hurts.

And it is all kind of odd, because I don't put much stock in these kinds of things. Dates never really hold much significance to me - anniversaries, the day a couple started dating, birthdays, deaths and so forth. Each day is what we make of it, not the number assigned to it. But today has bothered me. I don't know exactly why, but I do know it makes me sad. Ten years of my life for something so easily preventable, so easily fixable if the proper care and attention had been given, a minute or less to write a simple prescription for antibiotics. It could have been preventable. It should have been. It shouldn't be what it is now, but it is. And I wish that today was wasn't ordinary - it shouldn't be, at least not the way it is now, after ten years. I hope for an ordinary Monday morning, the type most people dislike and moan about. I want a healthy life, a healthy Monday, a healthy normal busy hectic Monday. I want to fall into that day like falling backwards into a pool, cushioned by the water. I want to run head long into the days and have to embrace me. And I think that is what has been bugging me - today might seem ordinary because I am used to it, my situation, but everything is far from it, external fixator and all. The ten year mark is just another reminder of that.

Regrowing My Tibia - Part One

I have had my external fixator for two and a half months. In that time, it has been the primary focus of many of my blog posts. This makes sense because, quite naturally I think, it has been the primary focus of my life. It would be pretty strange if the shiny blue piece of metal sticking out of my leg didn't garner at least some of my attention, right? What does seem strange to me, however, is that I haven't taken the time to actually explain how the whole external fixator, re-growing bone thing works. So explaining that will be the focus of today's post.

I have been confronted with a large and often confusing set of terminology since being introduced to the idea of external fixation after surgery number four at the end of August. When I say introduced it makes it sound like I had other options to consider and that I could choose which one I wanted. This is false. I had no choice; this was my only option, so not only was I trying to understand a whole lot of new terminology and grasp the process in general, but I was also trying to wrap my head around that it would actually be happening to me. Some of the concepts I am going to describe are rather hard to grasp - even my surgeon admits they doctors themselves do not fully understand how concepts, like regrowing bone, work - so please baear with me as I try to explain and translate some of the medical mumbo jumbo into words we, myself included, can all understand. Hopefully this doesn't come across as pure gibberish.

Because regrowing bone is a complicated process, I will be breaking this topic down into two separate posts. For starters, I will define the core terms and concepts that govern regrowing bone; the next post will go into my x-rays and what exactly my doctors are doing to me. Gee, that makes it sound like I am some sort of lab rat...

Here we go!

Osteotomy - surgically procedure to divide a bone or cut out a piece of bone. Osteo = bone; otomy = to cut.

Distraction osteogenesis -  a process in which two pieces of bone are slowly moved apart in order to tempt cells to bridge the gap, therefore allowing new bone to grow and/or a limb length discrepancy to be corrected. According to a quick Google search and the Seattle Children's Hospital, "a procedure that moves two segments of a bone slowly apart in such a way that new bone fills in the gap".

Bone transport - same thing as distraction osteogenesis. In fact, some sources describe the entire process as bone transport distraction osteogenesis. But just to make it confusing, other sources refer only to bone transport while others to distraction osteogenesis alone, and a good chunk more use the terms interchangeably. It is the process of moving, or transporting, bone.

Lengthening progressive or progressive lengthening - pretty much the same as both distraction osteogenesis and bone transport. Confusing, right? The progressive part refers to it being a gradual, continuing process. The parts of the bone are pulled apart at a controlled rate, usually 3/4 to 1 mm a day over a period of time (however long it takes to grow the desired length of bone).

Eternal fixation - a process used to stabilize fractures, correct deformities, malalignments and/or limb leg discrepancies, and to regrow missing sections of bone. The use of pins, wires, clamps and rods to stabilize a bone at a distance from the area that was deformed, broken or operated on. This process requires an external fixator.

External fixator - a device made of a series of pins, clamps and rods. It is constructed around a patient's limb and attached to the bone through a series of pins and/or wires. Basically, pins, (which are like giant screws) that stick through the skin are drilled into bone above and below the fracture/malformed/etc. area, and a metal device is attached to those pins/screws on the outside of the body. Any corrections that need to be made to the bone are done by adjusting the external device.

Docking site - when the piece of bone being transported reaches its destination (the end of another piece of bone), this is called the docking site. The ends of the two pieces of bone must knit together, just like a broken bone would need to do in order to heal. Because this is the last step in the bone transport, this is the final area to start healing.

Dynamization, compression or compressive loading - once the desired length has been achieved, the bone is lengthened a little bit more, thus putting pressure on the new bone, which enhances healing. I have no clue how this works. My surgeon tried to explain it, but according to him even the medical people are still out on what actually occurs.

Intramedullary rod - aka. intramedullary nail or IM nail. A metal rod forced into the medullary cavity (central shaft) of a bone. It is secured in place by several screws at either end of the rod/bone. This device is used to stabilize fractures internally, to share the load/weight with the bone, and to speed up the recovery period and reduce the amount of time patients are off their feet. This is a form of internal fixation, meaning it is inside of the body, in contrast to external fixation which is described above. Not everyone who requires an external fixator needs an IM nail and vice versa.

Bone graft - using bone from another area of a person's body or from a donor to replace missing bone. According to Wikipedia (because I am being as incredibly thorough and academic about all this), "bone grafting is a surgical procedure that replaces missing bone in order to repair bone fractures that are extremely complex, pose a significant health risk to the patient, or fail to heal properly. The Free Dictionary defines it as "a surgical procedure by which new bone or a replacement material is placed into spaces between or around broken bone (fracture) or holes in bone (defects) to aid in healing.

And that is that. I think I have briefly summed up the gist of it. The process and the main definitions are covered - basically a bone is cut into pieces, an external fixator applied, adjustments made to the fixator every day, and voila, new bone is grown! Except it's not that easy. It sounds like it, and in theory it is, but it is quite brutal, painful, and time-consuming for the individual going through it, not to mention emotionally and psychologically draining. Even experts in this kind of thing have likened it to medieval torture.

We are not counting the days

But we are. As much as we are acting like this is normal, nothing out of the ordinary, we know that it is not, so we totally are counting the days. Well, at least I am. I don't know if my mum is or not, but I definitely know that I am. Not in a I can't wait for this to be over so I will obsess over the days kind of way, but in a I have a need for a plan kind of way, and that requires having dates. Firm, unmovable dates written in ink, something that can not be erased, on a calendar or in a daily planner kind of way.

I have had my fixator for seventy-four days. I still have about eighty-two more days to go... not even half way there yet. Almost, but not quite. So much for the two months I originally hoped for when I first found out I would be getting an external fixator. I just have to keep thinking, "What doesn't kill you makes you stronger." Literally. Any bone is stronger than no bone at all. Even infected bone might be better than no bone. Not that I want infected bone. No, I want nice sturdy healthy new bone. Structurally sound bone. If eighty-four more days with a fixator is what it takes to help my body achieve that goal, then so be it. It will be worth it in the end.

But does going through all this really make me stronger? Who knows...

Not that it doesn't suck any less in the meantime either way.

Only the cool kids...

... have colouring books, mushroom socks, glitter bobby pins and polka-dot hair clips, a seemingly endless supply of tea and chocolate covered fondant mice and frogs (kikkers and muizen. For those of you who speak Dutch, links here and here).

They also have pill boxes. Unfortunate.

Longtime readers might recall that I had a pill box in 2011/2012 when the chronic bone infection was diagnosed and treated for the first time. It was much like this one, with two compartments per day and text on each lid, but it was much smaller and completely black. I think the text on it was gold but it rubbed off after a while. I had covered the bottom of it in teddy bear stickers, thinking it would cheer things up a bit. Anyways, by the time treatment was finished and I didn't need medication any more I was pretty sick of it so I chucked it in a drawer and promptly forgot about it. Fast forwards a year or so when I was sorting through that drawer and I came upon it once more. I didn't want to think about it. I didn't want to think see it. I didn't want to remember everything that it represent and that I had been through. I didn't want to have it anymore. So I ripped off the little lids to each compartment and chucked in the trash. Kind of cathartic, really.

Fast forward to the start of 2015 when the return of the bone infection was confirmed. For months on end I took antibiotics, usually four times a day. But, for a while it was only one medication, so no big deal grabbing for a pill bottle multiple times a day. Even when I was on two oral antibiotics a day doing so didn't bother me. After surgery I went back to one antibiotic plus another pill to help get things moving along and a month later the antibiotics was dropped altogether. So taking pills was a non-issue. No big deal. But then came the ex fix surgery and lots and lots of bottle of stuff. Not fun stuff like ginger bear and nail polish. No. Nasty stuff like narcotics, pills specifically for nerve pain, and more antibiotics. On the average day I take no fewer than ten pills - five in the morning and five at night. I take more if I need break through pain medication or a little something (okay, often a lot) to get things moving again thanks to the prolonged immobility and narcotic use external fixator require (more like demand) if you get what I mean. So there is a lot of opening pill bottles throughout the day. That has started to get on my nerves. And this week was the final straw because although my medications have stayed the same, I know take one in two different doses. And that means one more freaking bottle to open... Great.

So I gave in and bought a pill box - the very one thing that symbolizes everything that is wrong and that I have been through. You might think that thing might actually be my external fixator because it demands attention sticking prominently out of my leg 24/7 like the piece of dead weight it is, but no. Pills are the one thing that has been going on since the infection was first diagnosed. Thinking back now, they played a pretty significant role before I was diagnosed too, when no one would believe anything was wrong but they obviously had to prescribe things over and over again because pus kept leaking out my shin. And now, even though we hope to whatever gods there might be that the infection has now been completely evicted, I am still dealing with the consequences. Those consequences mean pills and pills mean a pill box. So there you have it - I bought a pill box and am both happy and sad about it.

On the on hand a pill box makes organizing my medication easier and allows me to avoid my hoard of pill bottles for a week at a time, but on the other it symbolizes the fact that I am not well... I am not healthy at the moment. I want nothing more than to be healthy again. I look forward to the day I won't need pills, and therefore my pill box, anymore. But at least for now I won't have to open what feels like a gazillion bottles everyday  or be confronted with a giant stash of medication on a daily basis. Now I just have to do that once a week. On the bright side, at least this pill box is much more cheerful than the last one, which can be seen in my post about this very topic (pill boxes) in 2012 (post can be found here).

Speaking of cheerful things, I bought a nice plastic container to keep my pin site supplies in. Up until now they have resided on the floor next to my chair in the kitchen in a cardboard box from one of the first batches of supplies I received late last year. It didn't look very nice, what with packing tape haning off it is and collecting the standard type of kitchen debris on the bottom of the box. It also wasn't very nice bending over to grab supplies each time I needed to do a dressing change - not easy with a bum leg. So I went to the dollar store (where I bought the pillbox too - 2$! I found the same one on several sites on line being sold from anywhere between 2 and 10$... robbery!) and picked up a nice plastic bin, which sits on the cardboard box I used to keep my supplies in, cleverly taped shut with medical tape, packaging tape neatly trimmed off.

A tiny bit of my stash of supplies.

See my craftiness here? I was not kidding when i said I used medical tape to close the cardboard box. I have also used it to finish cross stitch card projects when double sides tape just wouldn't do. You know you have been sick too long when...

I have at least 12 more bottles a sterile saline, around 1600 more sterile swabs, way to much medical tape than I could ever use, and a bazillion packs of non-woven sponges.

The bin is larger enough to fit enough supplies for about a week; I keep anything everything else in my room and fill replenish the bin when needed. It looks much nicer than the previous set up and, like the pill box, it looks neat and, more importantly bright and cheerful, something I can use a lot of during this difficult time.

Golly, you know you have been sick for too lone when pills boxes and storage bins for medical supplies become exciting!

Anyways. Back to what the cool kids have...

I went to the bookstore this evening and bought the last colouring book I wanted. Unfortunately the didn't have the cross stitch magazine I wanted with the Margaret Sherry card kits =( I love Maragaret Sherry designs XD

Mushroom socks found at the back of my sock drawer - got them as a birthday or Christmas gift from my best friend a few years ago.

I went to the dollar store on Thursday and hit the jack pot - polka-dot hair clips! Do you know how difficult those are to find?!?! Through in some sparkly glitter bobby pins and pencils covered in hearts and I am one happy girl XD.

Stopped at the Dutch store in Grimbsy on the way home from my hospital appointment yesterday. Teaaaaa!!!!

This is a Dutch thing from Sinterklaas Feest (kind of like the equivalent of Santa/gift giving in Canada and the US). They are made of fondant covered in a thin layer of chocolate.

Really, it is the little things getting me through each day. Unfortunately, I will have my fixator longer than expected ( will explain tomorrow when I update about my hospital appointment on Friday), so the little things really do help make my days a bit less dull and difficult.

A hint of denial and a sense of calm

The mind is an amazing thing - it lets us indulge in the simplest pleasures and allows our senses to take account of the smallest detail. We are not only able to remember things that happened years ago but also able to quickly accustom to a new scenario. But the mind also has the capability to make us forget, to detach from reality when it becomes too difficult, when an unpleasantry is greater than all things pleasant before and around us. It allows us to deny the very things around us, and that is where I am right now - a little bit of denial.

While getting ready for bed last night and putting away a few stray bits and bobs in my room I happened to glance at my leg. This is, of course, not so off. I mean, it is my leg after all. It is attached to me. And my leg has been getting quite a bit more attention (both by me and strangers) then usual lately what with the metal pins jutting from my shin. Curiously enough though, I seemed to have completely forgotten about it. Never mind the fact that I have had it for ten weeks. I had completely forgotten, just for a second, that is was there! In that moment I forgot about the fixator and the crutches, my daily pin site routine and inability to walk. I just calmly looked at my leg and thought "Isn't that a curious device? I wonder what it does. I have never seen a mechanism like it before." Those where the exact words I thought. It didn't feel strange or surreal or off if you will and it wasn't before several minutes had gone by before that I actually thought "Hey, that is my fixator!" And it is odd, because in that time I hadn't panicked or screamed or tried to shake the curious mechanism off my leg. It just was there and that was okay.

And that is why I am in denial about things... just a tad bit. It is strange because I have never felt that way before, not about anything. I have definitely been through several of the five stages of grief (anger, sadness, and acceptance) over the past decade as I have dealt with all the broken legged, bone infected mumbo jumbo; many chronically ill people go through these emotions. And there was (and to an extent still is) quite a lot of flip flopping between those stages, but I never experienced denial before. But here it is, and it doesn't feel bad either because, well, it is denial. You don't realize that there is anything to worry about! It also makes sense that I am dealing with denial now because, as normal as having an external fixator has become for me, it is also traumatic. Traumatic things can become normal too, but that doesn't make them any less traumatic. So a bit of denial helps with that.

I have an appointment at the hospital tomorrow morning to have new x-rays taken and a visit with my orthopedic surgeon. Thrusting me back into reality of course. I am, of course, hoping for good news but it is not like I am not expecting it. For once we are walking a more or less already traveled road. Everyone's fixator experience is different no doubt, but the concepts of bone transport, distraction osteogenesis, and external fixation are tried and true with quite a heap of literature behind them. So I am not expecting anything funny, not like the past anyhow, what with infection and delayed healing and all that. So I am neither nervous nor excited, just a bit curious instead. I have to trust that my body knows how to heal itself, albeit aided by some fancy metal bits and bobs. And for the first time in what feels like a life time I am trusting my body - I am confident in it =) It has all just become part of a normal routine. And I think that is why I am so okay with everything (regardless of the trauma that is the fixator itself). With the infection all those years, many of the previous surgeries, PICC lines and antibiotics and ER visits and scans there was so much uncertainty. So many things could happen and there wasn't really a road map to how things were supposed to happen. But now there is. So the last month had been one of the calmest I have had since the relapse was diagnosed almost a year ago. It feels really nice for things to be calm - not like gearing up for surgery number four in the summer and the PICC line, not waiting between surgery four and five to see if the infection would come back or not, not adjusting to the initial shock of the fixator in those first few weeks. Now there is a routine and a plan to grow back my tibia; it is more normal than before, even though it is still actually quite far from normal.

Anyways, here we are and things feel calm and good most of the time. It makes sense that denial and a sense of calm go hand in hand. And aside from mum and myself, I have some very curious physiotherapists who really want to see my new x rays next week. We are hoping for lots of fuzzy white bits on the x-rays. Go little bone go!