I'll give you a hint

Today I got good news at my appointment with my orthopedic surgeon. Not just good news... great news. Fantastic news. Bet you can't guess what it is! I will give you a hint: it has to do with something that is big, shiny and blue, a beacon for attention and the bane of my pajama pants. It is also what I have dubbed "an extrme form of piercing". These are all discriptors that I have used while talking about this thing. If  you have followed this blog, you should now exactly what I am talking about. XD

In other news, today marks the end of my attempt to blog every day for a month. I am pleased to say that this challenge was a success. Yes, I know that I didn't blog yesterday, but that was the only day that I missed this month and I think that can be forgiven seeing how run down I have been recently. And I did post multiple times per day several times. Considering this all together I am confident in saying that I did achieve my goal. This makes me rather proud - I mean, it's not like I have any real priorities or obiligations in my life right now, other than growing bone of course, that I can work toward and feel proud of - so it is nice to set a goal for one's self and feel a tiny bit accomplished, which I do.

Perhaps my next goal will be not to blog for a month! Just kidding. I find blogging very relaxing and it's nice to have a record of events to look back on. Memory is amazing that way - it has the ability to make past events hazy, kind of like your mind is protecting you from unpleasant things. Plus, I really want to blog about my fantastic news. It will definitely be worth remembering!

A good cry

I hada much needed cry today. With that out of the way, tomorrow looks much more promising than today did. Plus, I have to go up to hamilton tomorrow tomorrow morning to see my orthopedic surgeon and get new x-rays - always an excuse to go do something fun afterwards. I am hoping for a refreshing sleep tonight so that I can make the most of tomorrow. It would really help the day go well if I my x-rays showed lots of lovely bone growth. Keeping my fingers crossed!

Down to my bones

I was exhuasted today. Being chronically something or other is exhuasting. Yes, the bone infection should be gone, but regrowing bone takes up all your energy. Living with an external fixator also takes energy, both physically and mentally. And do't even get me started on how much energy getting around on crutches or hoping on one leg takes. Over the weekend I had quite a bit of energy, Monday a little bit less and by the time I was finished my appointment with infectious disease yesterday morning I was absolutely spent. Everything these days seems to be a giant balancing act: If I do this, will I have energy for other stuff later on? If I skip one thing, perhaps I will have some extra reserves of energy for something else. In addition, there is the thought that never quite escapes you: Even if I rest or take it easy now, there is no guarentee that I will have the energy I need later on. Such is the nature of chronic medical conditions.

I think the point were energy and chronic medical issues collid can be summed down into a few simples rules:
1) When you are chronocially ill, you have less energy to begin with.
2) Everything that you do will tak more energy than if you were healthy.
3) The amount of energy you do have is unpredicatable and can quickly change/without notice.
4) There is no guarentee that the things that would provide a healthy person with energy and/or a feeling of being refreshed, like sleeping, eating well and meditiation/yoga, will provide the same results for the chronically ill individual.

Bascially, you just never know how you will feel. You could get everything right - perfectly balanced diet, optimum amount of sleep, adequate periods of rest, an appropriate amount of exercise, and you could still end up exhuasted. Even thinking about how you are going to use your energy or how the lack there of limits or hinders your ability to do things is exhuasting. Plus, there is the mental aspect of living with a chronic conditions - worry, fear, uncertainy, sadnesss and grief. Those are things that wear a person out.

Today I am tired down to my bones, so there is no post about my leg. Neither is there one about my appointment with infectious disease. But I do have a picture of my gnome army that I will be posting soon. Anyways, not it is time for yogurt, and then bed.

An army of...

Today was a good day. I am exhausted, but happy. To sum up my appointment with my infectious disease specialist as quickly as possible: Concerns were addressed, medication prescribed and blood taken. Of course I won't just leave it at that. After all, I like to cross my t's and dot my i's. But for tonight it will do. A proper update will magically appear tomorrow, along with the full version of what's happened over the last few weeks instead of the bits and pieces I have left strewn behind me. For now I will say that the appointment went much better than I expected. Oh, and that I am now the proud owner of an army of gnomes. Now it is time for bed. Sweet dreams!

Sunshine and rain

Today was another good day. The sun was out, a nice bcreeze in the air, slightly more leaves on the trees than yesterday. Definitely a good day. I met the man from Saturday a second time today. We went over to his place to watch movies (and I brought over the brownies I made - they are more like cake, so next time I will only add one egg). We were having a lovely time watching a horrible movie. Unfortunately, the afternoon was cut short when one of his friends texted him, saying that he was hurt and asking for a ride to the hospital. Like any good friend, the guy I was with obliged. This is a good thing! But also a bit dissapointing. He was very apologetic and we both hope to meet up again soon. I am super impressed how infequently he looks at my fixator. This definitely helps me feel more comfortable and normal =) Other than that, I spent the evening working some more on my cross stitch blanket. I would say that I am now about half way done the final square. Once that is done I might go back to add some minor details to two other squares, but the end is clearly in sight! I already have my next project picked out - Seashore Sampler by Madeleine Floyd; only fifty hours of work compared to the c. five-hundred and thirty of my current project. If you wish to see it, you can find it on Google through the link here. When I complete it I intend to frame it in a white shadow box frame with actual seashells and pebbles from the beach in it.

Tomorrow morning I see my infectious disease specialist. This means getting up at quarter to seven... a time that does not exist in my world. Not only will I be grumpy, however, because this appointment is somewhat of a waste of time. I would rather be sleeping, and I couldn't care less where I have my blood work taken - here or Hamilton. The results are all the same in the end anyways. Hopefully mum and I can figure out something fun to do on the way home - hopefully drive alongside the escarpment.

I am now going to curl up in my bed with a good book while I listen to the rain hammar on the roof overhead.

Sunshine

Today was a good day. The sun was shining, it was warm outside (well, at least relatively speaking in when one considers that it is April, in Canada, where winter's icy fingers have yet to completely let go just yet), and the trees in the orchards are starting to bloom. My mum took me for a lovely drive in the country side today - it was like a sea of tiny little flowers. I learned that some trees blossom earlier than others based on their proximity to the lake - the cold water prevents the air from heating up quickly, so the trees near the water blossom later. It felt good to be outside - alive. It's like I was coming out from some sort of hibernation. I'm not trying to be over-dramatic when I say this. For most people, winter is just another season to live through - work and personal lives continues. But that hasn't been the case for me. The external fixator and all the surgeries, plus the dependence on crutches and often being either exhausted or in pain (or both at once!), have made it pretty difficult to venture out more than absolutely necessary (read doctor's appointments). It really does feel like I am coming back to life this spring. The fixator, of course, is still securely attached to my leg. That hasn't changed and likely won't for several more weeks. I can, however, feel the sun warming my face and watch nature continue round its annual cycle. That beats snowy, bleak dreary skies any day.

Despite all this, there is a feeling of futility, just the slightest bit. When all the surgeries began last summer, it was warm and sunny out. Likewise, it is warm and sunny out now and surgeries continue. I've gone through the last months of summer, followed by fall and then winter on crutches, only to start a fourth season (spring). Any longer and we will be a full year ahead. I desperately want to get my life back, to have a "normal" life. The sooner the fixator can feasibly come off (because we all know I've been dreaming of getting it off for months, even though I knew it wasn't a good idea), the better. I am ready to stick my toes in the sand and walk on the grass with my bare feet, to skip over the hot ground. I'm not at that point just yet.

But today was a good start. In addition to the blossoming trees and flowers everywhere, we saw quite a few animals - deer, cows, horses, chickens, sheep and two ducks that were getting it like, well, the birds and the bees. At one point we stopped to get gelato. Then it was off to the grocery store, only to finish off the trip with a visit to the bookstore where my favorite magazine was finally in stock! I look forward to reading in it a bit before bed. Or some Dickens. I have finally started reading something by Charles Dickens. It takes a good while to get through because it's hard to decipher everything but I am loving it (even if it's in increments of ten pages). Oh, and I have finished off the night by completing another little fairy on the final square of my cross stitch blanket. I am both relieved and sad to be at the end of the project, but definitely proud. I have put in about five-hundred hours so far, with a mere twenty estimated to go. It should hopefully be finished within the week XD After that I will still have about four months before school starts, so I am sure I will get to stitching something else. I already have a few other projects I am eyeing. Projects that will, understandably, take less time. One is about one-hundred twenty and the other is fifty. After that, I mainly have small stuff that can be completed in ten to thirty hours.

In other news, this is a busy week for me. Tomorrow afternoon I am going on my second date! I don't have a lot of experience dating, so I wasn't sure what to expect after the first date. I thought that the guy would wait a day or two before calling or texting me, but he texted the same night asking if I wanted to go out again. I assume that this is a really good sign. I obviously don't know what the future holds, but I am excited to see where things go =) It's a bit hard to find stuff to do at the moment because of my leg, so we decided to go watch movies at his place. This evening I baked brownies to take along. And when I say bake, you should read "got a box of powdery stuff at the store, added eggs, vegetable oil and water, put in the oven in order to pretend that I am baking". On Tuesday morning I have an appointment with my infectious disease specialist. I haven't seen here in almost four months, so I pretty sure see will order blood work. This is the doctor with the student I really don't like (the one who has now experience with either external fixators or bone infections and never reads my file), so we will see how it goes. I get a pass this Thursday for physiotherapy - there isn't much else we can do at the moment anyways. I also don't see my home nurse until next week Thursday, so Thursday is all mine. But on Friday I go to the fracture clinic at the hospital in Hamilton to see my orthopedic surgeon. I'm a bit nervous for that. I suspect that I will be told to come back in two more weeks, but I hope I am wrong and that my surgeon decides that the fixator is ready to come off.

And that's it for now. I know that this post wasn't like the usual ones - talking about my leg itself or how I am feeling about my leg - but I needed something normal to write about. The days, admittedly, are getting harder. My mum feels it too. It feels like we have been doing this forever. We have used up our energy, patience, reserves, and now we are spent. Alas, such is the nature of chronic medical issues. But the awareness of that nature does not make it any less difficult. So for now I am clinging to anything that can give me a sense of healthy and normal. As always, I am still smiling. =)

The Date

I went out on a date this evening. It was originally supposed to happen yesterday, but the guy I was going to meet wasn't feeling well and asked if we could reschedule. I wasn't expecting anything until next week, but he messaged me this morning asking if tonight would work. Of course it did, my schedule is like a vast, empty desert. I had a great time, and only one person asked what happened to my leg. There were some stares, but nothing outragious. And, my date and I hardly talked about my leg at all. We are going to go out again next week.

Sooo, it is possible to date when you have an external fixator on! Who would have thought? XD

Dating with an external fixator

Living with an external fixtor is challening at the best of times - it's hard to get comfortable; your clothing doesn't fit anymore; you're in pain, you have to haul yourself to frequent doctor's appointments, and you have to worry about potential complications; you are basically limited to things you can do sitting down, unless you have a friend willing to push you around in a wheelchair; and everybody stares at you. Emphasis on that last bit. Everybody stares at you. Everywhere. All the time. Even when they see you staring back at them. Or when they walk into a pole, kind of like when they are distracted by their cell phones.

Over the months I have become progressively more self-consious about my fixator. I have never like attention - I am pretty much as introverted as you can get. I do not want to be the center of attention. The term wallflower sums me up perfectly. So having something like an external fixator poses a pretty big problem for me because it acts as a massive beacon for attention. As first I was only bothered a little bit by it. I was aware of it, but getting out of the house trumped any unwarranted attention. But as time went by, I got more and more uncomfortable. I don't want people to look at me. I don't want people to give me sympathetic nods or offer half-hearted well wishes. I really don't want strangers coming up to me, trying to get some cool story of how I got hurt out of me. My medical histroy is none of their business. Unfortunately, I have experienced all of these things.

I also understand that people are trying to comprehend what they are looking at. External fixators are rare. My surgeon might be the only one in the province to work with them on adults. And he only uses them a handful of times per year. It's not like a cast or crutches. It confuses people and it scares them. After all, the concept of metal pins sticking out of your felsh is something quite frankensteinian. I felt the same way when I found out I would be getting one. So I completely understand the stares.

But then I don't. Because it is me being stared at and I don't want to be stared at. I am not some exotic animal at the zoo. I am a person in a nasty medical situation. I'm stared at enough at the hospital, both by other patients and health care professionals; in the waiting room, fracture clinic, pre-op clinic, emergency department and operating room. My life is filled with pain, discomfort and worry for the future (plus the desire to put on the pants I like). I know what it is liked to be singled out all the time and it feels horrible. Because I have gone through this experience, I also know that I would never stare at someone in the way that others stare at me. So in that regard I don't understnad why people stare at me at all. But then, they haven't been through what I have been through.

My point is, I find it dfficult to go out at the moment because the unwanted attention make me very self-conscious. Given this, it is quite something that I have decided to jump into the dating game. I was suposed to go on a date tonight. Unfortunately, the man I was supposed to meet texted me this evening to say that he was ill. He was very sorry and hoped that we could go out another time, possibly later this weekend if he felt better. I was quite dissapointed, but I also completely understand. Nobody likes to go out when they are sick; I know this well enough from my own experiences. I hope he feels better soon and that we can meet up at some point in the coming days. =)

Why am I telling you all this, you might wonder? Well, for starters, this post is primary aimed at other individuals living with an external fixator. The issues that I have had with my leg have robbed me of a lot of things, including being as active as I wanted to be, energy to do normal things, getting together with friends, continuing my education with my classmates, living on my own, and basiclly having the normal, healthy teenage years and young adulthood that most people have. They have also caused a tremednous amount of loneliness and isolation. The loneliness, by far, have been the hardest part of this entire experience. The thing is, sometimes it becomes all to easy to give into the loneliness and the idea that you are always alone that you actually start turning down opprptunities to go out with other people and fun. It is important to at least try to have some rememblance of a normal life and to interact with the individuals around us. This is not to say that it is okay for people to stare, because it is not. Nor am I saying that it is fault if you feel lonely, because it definitely is not. There are aspects to living with an external fixator that make it a lonely experience - you can't get out easily, you might not feel well enough to go out, it is hard to manage pain when you are out of the house, it can be difficult to get very far with crutches or a wheelchair, and so forth. It is also a lonely experience because so few people have gone through it - nobody really can relate to your situation. As a result, most people move on with their lives while you are stuck at home. People also might avoid you because they don't know how to react or becaus your medical misfortunes remind them of their own mortality. After all, it is often said that people don't know who their real friends are until they have a medical crisis. But what I am saying is that you shouldn't get so accutomed to the loneliness that you start turning down opprotunities to get out of the house and have fun. Sometimes it is worth is despite all the stares.

So I am hopefully going to go out on this date in the next few days. People are going to stare. The amn I am meeting might even stare a bit or ask questions (not that I haven't told him ina dvance what to expect - that would be a pretty big shock for him). But I am going to get out, have some fun, and meet someone new. It is worth getting over my self-consiousness. Doing that will make me feel good.

So, I am going on a date while I have an external fixator and people can stare all they want.  =)

The misbehaving pin

*Some of the pictures are kind of gross*

Way back when, or several months ago to be less dramatic, I was having trouble with one of my pin sites. I won't get in to the details of how my fixator works (you can read about that here), but the gist of it is that one of the pins wasn't tracking properly through the skin because the scar I got years ago when I first broke my leg was in the way. The scar caused a lot of resistance when the pin pushed against it, so instead of the pin tearing through the skin as it should of, the pin just pulled it along with it, causing the skin on one side to get all bunched up and super sore.

Here is what I will call misbehaving pin #1. Both pins were having trouble tracking, but the main culprit behind all the problems was the one on the right.

My surgeon cleaned up my pin sites a bit when I went in to have the heterotopic ossification removed on March 11th. This is what it looked like after surgery:

They healed up very nicely and could, respectively, no longer be called misbehaving pins. Unfortunately, that title was taken over by another pin, a pin I like to call misbehaving pin #2. It oozed fluid for weeks, then it got all red and manky and macerated, until finally my surgeon said it had to come out. This was done on April 13th. It turns out that it was infected - after taking it out, my surgeon pushed on the skin around it and pus came out.

Here is misbehaving pin #2:

And here is all that was left of it once it came out:

No more problems with that one!

Except now that the above mentioned pin is gone, I am having problems with the one next to it. That pin is closest to my foot. Since the pin that was above it is gone, all the fluid that came out of it had no where to go, so it's pooling around the very bottom pin. This is misbehaving pin #3. This pin drains a lot because it is at the bottom of my leg - every time I move my foot/ankle, the skin shifts around that pin. As a result, all the not so lovely fluid comes out. And because of where the pin is, it is a bit challenging to put on a dressing that actually stays in place - the tape used to secure it tends to come off when I move my foot around. But I do have to have extra non-woven sponge around the pin because otherwise the leaking stuff runs straight onto my foot and from there onto the floor or whatever I happen to be sitting one, like my bed. Gross. So now I am experimenting with different combinations of sponge and tape, all of which extend onto my foot. Fun times. Oh, and because the bottom pin is leaking more, the dressing is getting soaked faster. This ends up resting on my skin, making it moist and icky.

I don't have any pictures of misbehaving pin #3... yet. I'm sure I will in a matter of days. Then they will inevitably end up on here for your viewing pleasure.

I can't wait for the fixator to come off.

So much medical stuff!

I spent my afternoon compiling a list of all the different hospital appointments, emergency room visits, surgeries and/or hospital stays and other medically related activities that I have been to since we first suspected that the bone infection had returned. I will spare you the whole list and all the details that come with it, but here is a brief break down of things. The list spans from November 3rd, 2015 to the end of this month (just to be all inclusive and make it the lovely round number of exactly eighteen months).

I have...
had one bone scan, WBC scan, MRI and CT scan (not at the same time, of course);
had eleven appointments with my infectious disease specialist;
been to the fracture clinic to see me surgeon (or one of his colleagues or students) seventeen times;
attended three pre-op appointments (they recognize me there);
had four surgeries (they don't just recognize me... they know me by name);
spent a total of thirteen days in the hospital, broken down into two separate hospital stays;
visited the emergency department on fourteen occasions (they know me by name now too);
had two PICC lines places;
been seen by a home physiotherapist three times;
seen one cardiologist;
gone in for one echo cardiogram;
attended twelve physical therapy sessions;
gone to the hospital just for blood work on five occasions (this usually happens on the day of an appointment in order to avoid havig to drive to Hamilton two days in a row);
and have had almost thirty visits from a home care nurse.

That is a lot of medical stuff. Then factor in all the days I didn't feel well, spent waiting for scan results or x-rays, had to take care of my own PICC line (so glad it's gone, even eight months later!), , spent recovering from surgery and was stuck with my external fixator - that adds up to a lot of days. A lot of days that revolved around medical stuff. You don't realize how much it adds up until you actually have it down on paper in front of you. It is very sobering. I will never take life for granted again. It is the simple things, like being able to walk outside (or walk at all), cook your own dinner, make your own bed, that make life precious.

A tiny wrench

I had this wrench that I used to make the adjustments on my fixator with. It was a little 7 mm wrench that was made by the same company that made my external fixtor; it wouldn't surprise me if it actually belonged to some sort of super expensive fixator kit tucked away somewhere in the hospital. But I had it for a while. Now, when you think about it, having a wrench is not some crazy thing or novelty item, not like owning ninety-seven cats or hoarding newspapers or collecting pieces of toast that look like Elvis. Most people have at least one wrench somewhere in their home. After all, it is a common tool. This wrench, however, was different. I literally used that wrench to regrow part of my body and that is not something that many people can say they had to (or got to) do.

I made adjustments to my fixator twice a day. Every twelve hours almost every single day for four months. There was some initial confusion when I first got the fixator because I couldn't remember whether or not I made all the necessary adjustments per day. I didn't have a system to keep track; the wrench just sat on my desk and I would rely on my memory... it didn't always work. It's kind of funny because at first I really did remember - it was like clockwork, an exciting thing that gave me some control over my body and situation, but a few weeks in and all the days started to blend together and that's when it became difficult to figure out if I had made the right adjustments or not. This was kind if a disater because my bone was suppoer to grow at a specific, steady rate. Grow to littler and you end up with premature consolidation; make adjustments faster than the bone grows and, well, the bone can't kep up. And you know what they say, slow and steady winds the race. My mum, being as smart and savvy as she is, came up with a solution. Before bed, I placed the wrench on my bookshelf. When I would wake up at eight I would grab it, make my adjustments and place it down on my desk. Then I would get on with my day.  Fast forward twelve hours and I would hobble back over to my desk. If the wrench was on it, it meant that I still had to make adjustments but if it was back on the bookshelf I new that I was completely done for the day. It seems pretty simplistic, but this system worked for me.

The goal was always to grow 6.5 cm of bone and then to crank the knob on the fixator some more to put pressure on my leg, coaxing the ends of my bone to knit together. This plan was put on hold for about a week in March because of the heterotopic ossification thing but after that we hoped it would be smooth sailing to the finish line - a whole new section of tibia! Unfortunately for me, although the seas were clam and the winds fair for about a fortnight, they did not stay that way. My pins started bending, my leg started hurting... well, more than it normally hurt, and I found out that there was, yet again, premature consolidation at the wrong end of the bone. And that's when our plans blew away in the wind and all hopes of continuing with the adjustments sunk... sunk like a metal wrench in water. I don't actually know why I wrote that last bit... almot everything sinks.

Last week I had to have one of my pins removed because it had gotten infected. When I had seen my surgeon the week before, he told us that we wouldn't be making anymore adjustments. Being the organized woman (woman? Or girl. I mean I am wearing elephant pajamas. And not the one's from a post last week - I have multiple elephant pajamas) I am, I realized that I wouldn't need the tiny silver coloured wrench sitting n my bookshelf any more and decided to return it to it's rightful owner (my surgeon) before it got lost in that bottomless drawer or junk we all seem to have. I couldn't actually take it in to the operating room with me (although I nervously fidgeted with it while being prepped), so my mum gave it back to him when he came to talk to her when everything was done.

Now I no longer have my trusty little wrench. Not that it ever truly was my wrench; it was more like it was on loan to me from the hospital. But it became part of my every day routine and a major component of my leg getting better. And now I no longer have it. It seems that I have grown slightly attached to it. I miss looking voer and seeing it on the shelf, the weight of it in my hand, the slight resistence I felt when I used it to adjust my fixator. If this is how I feel about a tiny little metal object, imagine how I will feel about my fixator when it comes off. It will seem like a part of me is gone.

Why am I telling you all this? Because I am a tad bit sentimental. When I got the wrench back on December third, I wondered about it. Who did it belong to, the surgeon or the hospital? Had anyone used it before me? If so, why did the need it? How long had they needed it for? Did a wrench come standard with every external fixator sold like every happy meal comes with a toy? Who had wrapped tape, the colour of skin, around it? Why? A lot of trivial questions, but ones I asked myself none the less.

Now that it is gone, I look at my bookcase and see an empty place on a shelf. The wrench is no longer mine. Perhaps it is back in the kit it came from or somewhere in my surgeon's office. I look at that spot on the shelf and wonder who will get to use it next. Will they ask the same questions I did? Will they wonder who put the tape on it and why? Will they have the same hopes as I did - that they could successfully regrow their bones or straighten out a deformity? Where they wondering about the person (me) who had it before them?

Validation

Today was not a good day. I was tired and grumpy. No, I was miserable. That's one step up from grumpy. I don't have miserable days very often, but I think that I deserved it. Everyone keeps telling me how close I am getting to the end of this, as if the fixator coming of is some sort of light at the end of the tunnel, then like will get back to normal and be all rosey again. Don't get me wrong when I say this, because getting the fixator off will be a big milestone, but everything will not all of a sudden be sunshine and daisies after that. There will still be month of physiotherapy and learning to walk properly again. I will still be using crutches or a cane for a while. It will be another four months before I move back out and pick up where I left off at school last August. The prospect of four months of physio and the isolation that will continue into that time are not small matters. And in the the scheme of things, four monts is a long time... it's half of the eight months I have done so far and while half of the time that's already passed it's not exactly a matter of days either. It's easy for everyone to tell me that the light is at the end of the tunnel, but they haven't been through everything I have. My surgeon han't had to give up a year of is career. My mum and my friends haven't had to sit at home for eight months and coutning with only minimal contact with the outside world - they could go to school or meetings, to the mall or on a walk or out to meet friends. They haven't been the one's with the giant blue tube screwed into their bones for the last five months. Neither is it one of their legs that had been cut open numerous times or one of their bones that needs to regrow and solidify. It's easy for them to tell me to cheer up when I have a bad day or voice my frustration at the entire situation - they can walk away fromthe situation, both literally and physically. Pun intended. I can't. I don't need somebody to tell me that things will be all better soon. What I need is somebody to validate my feelings. I don't think that is so wrong to want...

on a bit of a brighter note, I spent the day cross stitching tiny bird hourses and birds on my cross stitch blanket. I am finally working on the final square. The goal is to have it done by the time I see my surgeon next week Friday. Well, the actual goal is to have it done by the time the fixator comes off - it doesn't seem right finishing it after - but I am hoping for next week Friday because that is the last fixed date I have for sure with the fixator on. in all likelihood it will still be on a few more weeks after that, but I don't want to be caught of gaurd with another forty hours of work to do with the ex fix set for being removed within half a week. So next week Friday is my goal. It is something bright an positive to keep me distracted. And who couldn't be happy cross stitching tiny birds and their homes?

What if we hadn't...

Last summer I was pretty sick; I had nigth sweats, low grade fevers, exhuastion, bone pain, tiny draining sores on my shin, difficult standing for long periods of time... you get the picture. I was ill, fed up and on the verge of being miserable. Since then, I have been through quite a bit - PICC lines, IV antibiotics, more surgeries than anyone should have in a life time, a good chunk of my tibia cut out, and external fixator. Like I said, a lot of stuff. I like to think that I am doing much better now than I was this time last year. Yes, I can't walk right now and have giant metal pins sticking out of my leg, and I am doped up on concotion of pain killers, antibiotics and stuff to help calm the nerves in my leg downa, but for the most part I am doing pretty well. Bored, lonely and running low on patience, but also happy and realtively healthy. We just have to work in the endurance part once the ex fix comes off. I wager that I am doing pretty good and think that I am much better off having everything that has been done.

Now that the end is somewhat in sight (and by that I mean the fixator should be coming off within a month; the rest will still be a long road to travel), a little voice at the back at my head has started to ask those questions I have been surpressing all these months: "What would have happened if we had done nothing? Where would I be now if we hadn't intervened? What would the infection ultimately have done to me?" On the one hand, I am scared to know the answers because, well, it's scary - I would probably have ended up in a very bad place medically speaking. On the other hand, it would be nice to know so that I could compare the what if to reality.

Sometimes the current situation can get quite discouraging. As I mentioned, the lonliness, boredom, and feeling that things will never get better can be difficult to deal with. Plus, things haven't exactly been smooth sailing over the last two months - the heterotopic ossification, foot going numb, nerve pain, surgery, more premature consolidation followed by another trip to the operating room. It would be really nice to measure this against what would have happened if we had done nothing or, as my infectious disease specialist first suggested, waited until last November for a follow up visit. Being able to make sense of what could have happened might help me grasp how far I have actually come, even if sometimes it doesn't feel like that is very far.

So I have been toying with those questions in my head for a few days now. I think that I will bring them up with my surgeon once the fixator comes off.

*A rant directed at homeopaths and health nuts who shun modern medicine - stop offering me medical advice!*

During a car ride this evening to get me out of the house for a bit and enjoy the spring sunshine, my mum told me about an event she went to at some point in the last few days. She knew several of the individuals who attended. One of the women there approached my mum and asked how I was doing. As my mum explained the latest things that have happened (like the premature consolidation and the pin removal), she mentioned that one of my pin sites was infected. This woman than proceeded to tell my mum that I could greatly reduce my risk of infection by taking some homeopathic remedy at a local store. Not wanting to get into an argument, my mum bit her tongue even though she really wanted to tell this lady off. Fast forward to this evening, and she was telling me what happened.

Now, this is neither the first time that somebody has offered me some magical cure that my super smart doctors haven't thought of because, you know, big pharma and all that other crap that many followers of homeopathic medicine seem to believe in, nor will it probably be the last. And that kind of pisses me off. Why? Because by providing me with that unsolicited advice, those individuals are making an assumption about me and the medical decisions I make. They are assuming that I don't know any better and am being duped by the big scary medical corporations; they are assuming that I am to stupid to make my own medical decisions and understand what is happening in my own body. They are assuming that I am naive and need somebody to come save me with their amazing, glorious, complete cure promising wonder supplement, concoction, or some other BS. They are assuming that they know more about my health from just the few little details I tell them than I do about my own body and everything I have experienced it go through. They are playing the holier than thou card - if you would just follow my advice, you would get better; you are sick because you don't take this remedy so you must want to be sick.

The thing is, I actually know how the medical system works - I have been dealing with it for the past decade. Thanks to nursing school, I know how the human body works. As a result of both my university and college education, I know the difference between an unbiased, scientific study and some statistics a non-accredited quack pulls of the internet and alters in order to prove his or her own point. I am also smart enough to not be fooled by the logic that homeopaths use: we will try this supplement or combination of natural remedies and see what happens. Don't worry if it doesn't work for you, because everybody is different - different people might need different remedies for the same problem. This way of thinking is flawed, illogical and goes against everything that is known about the human body. It's like treating a person who has an infection with an antibiotics without knowing the cause of the infection first and then, when the infection doesn't go away, blindly searching for anther antibiotics and discarding the old one because "well, everyone's body is different" instead of actually trying to figure out what is causing the damn infection. It doesn't make any sense! Unless the strain that a person has becomes resistant to antibiotics, all staph aureus infections should be able to be successfully treated with the same medications, regardless of the characteristics/emotions/desire to get better of the person who is ill.

Furthermore, by the logic of these homeopaths and all natural nutcases who shun everything within the medical community, you will never actually be able to prove how a medical issue was solved: by flip flopping haphazardly from one natural remedy to another, you never can say for sure which one actually cured the problem or, perhaps, see if the problem actually cured itself. And without scientific studies, which homeopaths conveniently black list because they are used by pharmaceutical companies (note that this implies that every university around the world is also either being duped or out to get everyone under that logic because *gasp* they all use the scientific method as well), you can never have an unbiased study that proves their point. This means that you can never prove or disprove anything that they say. If you are ill and stick with actual medical treatment but don't get better, it's because you didn't us the homeopath's natural remedy but if you do use the natural remedy and don't get better it's because "every body is different and some people might need different cures for the same thing". With that logic, you can never prove that something does/doesn't work. You can also never figure out which treatments actually are successful.

And don't even get me started on the idea that you can dilute a substance 100X and the resulting solution will have the same affect because the surrounding molecules will have a "memory" of the original substance that was diluted. That is not how chemicals and molecular bonds freaking work! A water molecule doesn't have a brain, it has no memory. And by diluting something that many times, there won't be any of the original substance left. That's like taking my pain medication (which I really need because oh my god I have metal pins stuck into my flesh), diluting it 100x, and then expecting it to have the same affect. It won't and I would probably throw a book at you for both causing me pain and your stupidity.

When it comes to my health, I need a little bit more to go on than the word of one individual - an individual who hasn't been to an accredited institution with rules and regulations, who has the freedom to prescribe whatever he or she fancies that day. Sure, modern medicine does have it's drawbacks and I am not a supporter of everything that pharmaceutical companies do, but there are best practice guidelines, unbiased studies, meta analysis that compare the results of many studies on the same topic, and a strict code of ethics and professionalism to adhere to. That appeals to me much more than whatever is offered to me by some woman with a degree she bought of the internet. So no, unless your magical concoction can regrow my tibia and prevent my leg from ever getting infected again, I don't want it. But I sure as hell want to see some scientific studies on it first if you insist that it can. You know, just to make sure you aren't fooling me into buying some super expensive herbal remedy from which all the profit goes directly into your pocket.

Oh, and by the way, you can believe all the nonsense about big pharma coming after us that you want, but I don't believe that my doctors have put so much time and effort into making me better because they are part of some sort of scam. That just doesn't make sense. If you want to believe that line of thinking, by default you have to believe that every single health care worker out there is in on the scam - that instead of loving, hard working, self-less, compassionate people, that they are all leaching, thieving ***holes. And that's just not true. My surgeon, for one, has worked endlessly to fix my leg. He has a crazy schedule, sees upwards of 100 patients per clinic day (which, by the way, winds down to less than 5 minutes per patients), performs surgeries, and works at several different hospitals. Oh, and he is involved in teaching medical students to. And, he does research and presentations. He is a pretty busy man. But despite all this, when he sees me he treats me like I am the only patient there and gives me his full attention. I don't have to worry about him being busy or about all the other patients in the waiting room. I can just take my time to ask my questions and express my concerns; he will answer as truthfully as possible. And, while he remains ever hopeful, he doesn't sugar coat things or offer me some ultimate cure. He deals in reality, not the unrealistic notion of an ultimate cure; I respect that. He wouldn't do that if he didn't ave my best interest at heart, if he was just in on some big scam.

The next time that you are ill and actually require medical attention, remember that the health care professionals are working hard to help you - their shifts are often long, exhausting, and filled with patients expecting to be treated as if they are at the Hilton Hotel. Their jobs are underpaid and often thankless, but they still come in to do them every day and that has nothing to do with some sort of conspiracy. Or, you know, you could take your own remedies when you are ill and see how far they get you. Unfortunately for you though, neither modern remedies nor your snake oil will cure stupidity.

I feel a whole lot better now. Rant done.

Second video

I couldn't figure out how to get two videos in one post - every time I hit publish the second video became a duplicate of the first. So here is the video of me trying to wiggly my toes.

Another post about toes

Yesterday's post was quite long so I thought that I would follow it up with a much shorter one today.
It's not even a post, really, just a few words and two short videos. But I'm going to count it anyways because it still took some effort to get everything uploaded to YouTube.

The first video shows you how I make the adjustments to my fixator. Each adjustment is a quarter turn, which it is the equivalent of 0.25 of movement. I would do a half turn in the morning (0.50 mm) and a quarter turn at night (0.25 mm), for a total of 0.75 mm of bone growth per day. I thought this might be interesting anyone who has been following my blog regularly because I have mention doing the turns so often. I made my final adjustment on April 3rd.

In the second video you can see my inability to move my toes. They can move downwards a bit, but they don't actually bend. I was really struggling with this in January until I started going to physical therapy. The exercises I got helped for a while, but then things slowly deteriorated again as the pins on my fixator moved downwards, exerting more pressure on my muscles. This movement should come back with some intense physio once the ex fix comes off.

I will be so thankful when I can move my toes properly again. Life is really about the little things!

Why would you do that? Cosmetic Limb lengthening...

Hello there! If you are looking for surgery pictures and last week's x-rays, they are on their way, but not just yet. I apologize for the delay as I know some of you have been patiently waiting to see them. I promise that they are coming. I just haven't gotten to transferring them from my phone to my desktop and from there onto my laptop. My desktop has a sim-card reader, but my laptop does not. Why not just blog from my desktop, you ask? Because I can't actually sit at my desk to do so. This requires sitting in a chair and that causes swelling. And we all know that swelling equals pain and discomfort. Couldn't you just elevate your leg on something? Unfortunately, I can't. I had already been doing this for a good four or five months. Doing so requires turning my neck sideways to look at the screen which, in combination with the crutches, causes pinched nerves and numbness/tingling in my hands. As such, I can only choose one of these activities - using my desktop (when I have a perfectly good alternative) or using my crutches. As you might have guessed, I have chosen the latter. The reasons for this are obvious and self-explanatory. So, I sit in bed with my laptop and that means no pictures yet. But that is not why I am blogging today. No! I actually have something quite baffling that I want to bring up.

As any long term reader of this blog knows by now, I have something called an external fixator. It's big, it's blue, it acts as a beacon for attention, it is the bane of my pajama pants and, most importantly, it holds my leg together. I have my external fixator for a very legitimate reason - I had a chronic bone infection that kept coming back, leaving my surgeon with no choice but to cut out 6.5 cm of my tibia. That's not exactly a surgery you can walk away from...and cue the collective groan.

So I have this thing on my leg, and it's being used for something called distraction osteogenesis via bone transport. A loose piece of bone in my leg is moved downwards a tiny bit each day (this is the transport part), and new bone, or it's precursor - cartilage, fills in the ever widening gap between the two ends of bone (the distraction osteogenesis or new bone part). Right now I am in the final stage - compressive loading. In this stage, the entire bone is put under pressure to help the ends at the docking site knit together. This is similar to how the two ends of regular broken bone would knit together and heal. If it wasn't happening to me, it would be fascinating. Oh, who am I kidding. Even with the ex fix securely drilled into my bones, it still is fascinating, albeit painful. But my point is that it is possible to regrow bone. I do not know where I would be without this process. Nor would many other people. It is used to correct limb length discrepancies and regain length lost due to injuries, infections or cancer. Fixtor's themselves can also be used to stabilize fractures, correct external malalignments and, among other things, allow swelling to go down before surgery can be performed to fix a broken bone.

There is, however, another use for external fixators and the whole distraction osteogenesis thing. It is called cosmetic limb lengthening. In many ways, cosmetic limb lengthening works in the same way as re-growing a missing section of bone. There are, of course, some differences, but the main principles remain the same. The biggest difference can be found in the name itself: cosmetic. That's right. There are people going through what I am right now just so that can be taller. Say what?

I first came across the concept of cosmetic limb lengthening while I was watching a documentary about it on TVO. I thought it was absurd and, seeing how I myself am pretty short (5'1". 5'2" if the person measuring me is generous), rather silly. Yeah, there are things that can be a bit more challenging when you are short, like being able to reach items at the grocery store or finding pants that fit without needing to be hemmed, but there are also perks, like the over all cuteness factor and being able to fit into small places. So being short is not an issue for me. Anyways, I watched the documentary, was a bit baffled by it and then kind of forgot all about it.

Fast forward to last September, a week after finding out I would be getting an external fixator and a day or so after being discharged from the hospital, and I found myself sitting at home in front of the all mighty Google. I both wanted and didn't want to know about external fixators. I knew I couldn't avoid them, but by god did I not want to have to accept that I would actually be getting one. Never the less, I typed in those magical words external fixator and presto(!), they popped up before my eyes. Between the tears that followed, I managed to read little bit about them a bit. That was followed by more tears and turning off the computer for the day. I couldn't handle it. Hadn't I already been through enough? After everything, would I really still have to get a metal contraption drilled into my bones like some sort of Frankensteinian monster? I didn't want anything to do with external fixators. All I wanted was to be healthy again and get my ability to walk back.

After getting over the initial shock and inevitable fear and feelings of unfairness, I decided that I wanted to know everything I could about external fixators. I wanted to be prepared. I couldn't control what was happening to me, but at least I could make sure that I was a well-informed patient. So I read and read and read and then I read some more. And between all of that reading, I started seeing links to sites about cosmetic limb lengthening. There I was, sitting in bed, emotionally drained, missing 6.5 cm of my tibia and dreading what I was going to go through while looking at a forum of people who wanted to willing do it, despite all the risks, just to be a bit taller. In a way, it is beyond comprehension. I had absolutely no choice; meanwhile a perfectly healthy person was contemplating something horrific, and for what? To get more dates at the bar? Be taller than his/her peers? Become a model? Because they thought that being taller would increase their self-confidence?

Those are actually the reasons people gave on those forums - job success, self-confidence, finding a date or spouse, modelling, feeling more self-confident. All of these people thought that increasing their height would somehow improve their lives or solve their problems. All I could think was that they seemed pretty fixated on one thing - their height. Height is not the most important thing in life. Given the huge problem's faced my countless people around the world on a daily basis, I think that height is actually quite insignificant. And anyways, if you are that unhappy with your life that you are willing to go through a process as barbaric as limb lengthening, and it really is barbaric, being a few inches taller will not solve those self-esteem or self-worth problems. Instead of learning to love and accept themselves, these people want to undergo major surgery, months (often longer) of pain, discomfort, and infection risks, and gamble against all the complications that could arise for something as trivial as height. In that time, they will be completely dependent on other people; they can't accomplish any of their daily needs - cooking, cleaning, laundry, groceries; their careers will be on hold (possibly those of their family members who are acting as caregivers) as well. The list goes on and on. It just absolutely baffles me.

To try to comprehend why anybody would do this to themselves is pretty difficult, if not impossible. This is especially difficult to do for individuals who are forced to go through this process for legitimate medical reasons - people do not have a choice I, for one, can't understand how somebody would willingly opt to this and therefore willingly go through months of pain, uncertainty, and mind numbing boredom as they sit at home for months on end. In addition to all that, it costs a hell of a lot of money. From what I have read on sites, like the ever controversial Make Me Taller, getting cosmetic limb lengthening comes at a hefty price, often upwards of 100,000$ dollars (both legs included!).

I can't grasp why people would do it but I can think of quite a few reasons why they shouldn't:

1) In relation to everything else, height is pretty irrelevant. Yes, there are issues with height-ism in the world, especially in places like China and India. Height discrimination even happens in the Western world - women seem to prefer taller men, models have to be really tall, tall people have an easier time finding work in the upper levels of big corporations and taller people are often taken more seriously than shorter individuals. But is it worth the time and money to lengthen your legs? As a shorter person, people often assume that I am very young and therefor treat me like a child just because of my height. This is not fair, but I get over it. While it can be a nuisance, would I really spend one-hundred grand, risk everything that could go wrong, and go through all that pain/discomfort, plus the inherent risks of any surgery, just to be a bit taller? Hell no. I would learn to be happy with who I am.

2) As previously stated - cosmetic limb lengthening costs one-hundred freaking grand. That's half a house. That would pay for both my entire college and university tuition twice and there would still be money left over. A retirement fund, a nice car or vacation, a way to help a non-profit organization. People can do what they want with their money, but it seems so wasteful to spend it on being, at max, 2.6 inched taller. That's not even that much height! The muscles and tendons in your legs, like the achilles tendon, can only stretch so far before they are irreparably damaged, leading to something called foot drop or ballerina foot. If you don't want to risk foot drop, the safe limit for cosmetic lengthening is 2 inches or 5 centimeters. Is that really worth 100,000$? If you have to pause for even a moment to think about this, I would refer you back to number one - work on your self-esteem and self-worth.

3) The risks. This is a giant can of worms, ranging from the foot drop mentioned above (which, by the way, often requires surgery to fix or wearing special lifts in your shoes for the rest of your life), non-unions (ends of the bone fail to knit together once lengthening is done or the new bone fails to harden properly), chronic bone infections (that's what I had), hardware failure (the fixator actually breaks and needs to be replaced), pin site infections, permanent nerve damage and the inherent risks of any surgery. Is it worth it? No, no, no. A thousand times no!

4) Fixators cause pain and discomfort. Pain medication helps and can be tailored to each individual, but there is no way it can be avoided altogether. On a daily basis I experience bone pain, nerve pain, muscle pain and tissue pain. That's a lot of different types of pain. I am on long acting pain medication 24/7 and have fast acting medication for break through pain. Usually it covers everything, but it's not always enough, leaving me lying awake in bed at night for hours at a time. The external fixator has caused some of the worst pain that I have ever experienced. Te worst pain is often bone pain. And then there are the aches and pains that come from muscle wastage and weakness, muscle stiffness (I can't bend my toes anymore), and pain if you bump the fixator into something (as careful as you are, it will happen at some point).

5) Speaking about pain and discomfort, you will get it from using your crutches. It doesn't matter how strong your upper arms are or how properly you use the crutches; it is unavoidable. After eight months, I have major callus on my palms, I get tingling (and sometimes numbness) in my hands, and the muscles in my back and around my neck or insanely tense. Combined with the pain and discomfort caused by the fixator and the inability to walk on my right leg and the muscles wastage in my leg and loss of endurance overall, I feel like a frail elderly woman. I get excited when I see a grab bar in the bathroom to hold onto; it can be difficult to stand up from a sitting position - sometimes it takes me several attempts. By body is exhausted. So limb lengthening doesn't just affect a person's height; it affects the whole body over the course of however long the limb lengthening process will take, which is often a year or more). It is also important to keep in mind that the long term use of crutches can cause permanent nerve damage in your arms/hands. Is this all worth a few inches of height? You tell me...

6) As numbers four and five illustrate, the whole thing plain old sucks, and it's not over when the fixator comes off. Once my leg is better, there is the challenge of learning to walk again and getting my over all strength back. It's not just about your time in the external fixator. So something taking a year or year and a half instantly turns into something much longer, and some side effects or problems that pop up are permanent, and that means life long.

7) Depending on how much length you grow, you might have to give up physical activities, like high impact sports. It being two inches taller worth giving up something that you love?

8) Although I am the one with the external fixator and it is in many ways an immensely personal battle, this process has had a profound affect on my entire family. Beside my self, of course, this ordeal has affected my mum more than anyone else. She is with me every step of the way. She is there in the waiting room as we wait anxiously to see the surgeon. She is there with me in the car when we drive to the hospital. She is there with me when we get bad medical news. She is always there at the hospital, anxiously waiting for me every time that I have surgery. She is at home with my when I break down and cry or say that I can't do this any longer. Although in a different way, it affects her too. Is it fair of you to impose this on your relatives? Do they agree with your choice? If they do not, are you going to do it anyways, ultimately meaning that they have to care for you anyways? Do you realize that it affects their lives and can put their own plans on hold? Is it fair of you to place your desire to be a little bit taller ahead of their needs or goals? Have you considered that your choices affect others; that your parents go through all the stress of the whole getting longer legs process too? Will they have to listen to you moan and complain about the pain or discomfort you are going through, or get upset about any complications that arise, all which were completely preventable if you didn't do it to begin with? These are important questions to ask. When you read the following sentence, keep in mind that you are talking to someone who has medically required a fixator, somebody who has gone through the pain/emotional difficulty/stress, someone who has seen the impact of it on her own relatives. Given everything I just listed off, I think that it is quite self-ish and egocentric to get cosmetic limb lengthening done. Unless your willing to pay for a private caregiver, of course, but seeing as you'll already be shelling out a hundred grand for the ,limb lengthening itself, I doubt it.

9) If something goes wrong, you will be in actual need of medical attention. You are therefor utilizing resources in order to fix something that was entirely preventable; resources that could have gone to a patient with an actual medical problem; patients like me who did not cause the situation they are in. I do not know if this is ethical. Breaking a leg playing soccer is on thing - it's an accident. But purposefully having both of your legs broken (yes, both legs are lengthened at the same time), having both legs placed in external fixators and having the ends of your bones slowly pulled apart? That is not an accident. It is done with very clear intent. If it goes well, you are a bit taller. Yay? I guess if that's what you want but I would seriously question your self-esteem and values. But if it doesn't? You will have major medical problems on your hand. Trust me, you don't want a non-union, or a mal-union, or nerve damage or a bone infection. I have had all of these things happen to me - it is no walk in the park. In fact, there is no walking. If any of these happen, you will require treatment, lots of it, and that is taking resources and doctors away from other patients.

10) Here is the thing that bothers me the most about cosmetic limb lengthening - some people who have had it done lie about the scars the process leaves on their legs. Yup. They want the benefit (or at least what they think is a benefit, but I'm not convinced) of being taller but not the stigma that goes with it. I don't know how many times I have heard people on cosmetic lengthening forums or posts say that they will lie about their scars. Some say car accident, others say torn muscles, others say it was to correct a deformity (one that never actually existed). When people lie like this, they get sympathy. Sympathy they don't deserve. They choose to go through this horrendous process,  which has been likened to medieval torture by doctors themselves just so you know. I find this incredibly rude and offensive to individuals like myself who have actually been required to get an external fixator and go through the distraction osteogenesis process for legitimate medical reasons. It makes me very angry to read about individuals doing this. They are insecure about their height so they go through an invasive and completely unnecessary medical procedure. After that, they are insecure about people finding out that they went through that very same procedure. How does that end up increasing self-esteem? On top of that, then they have the gall to lie about it. That is wrong. If you can't be proud of the scars, don't bother going through this process.

And that's it really. I am against cosmetic limb lengthening and think that is should be illegal. In fact, it is banned in some countries. I have tremendous respect for my surgeon and what he does. He says that he works with external fixators because there is a need, even though it is difficult. He might be the only one in the province to do this type of orthopedic stuff on adults. I'm not sure that I would think about him the same way if he offered it to patients for cosmetic reasons. I would be very angry if I were sitting beside somebody in the fracture clinic waiting room who was doing this for cosmetic reasons. In all likelihood, they would want to talk to me about fixators, as if it was some form of shared experience But it is not - I didn't have a choice. Anyways, the point of this post was to introduce you to the world of cosmetic limb lengthening and why I think it is a horrible idea. It's just incomprehensible.

* Just a note here: I think it is fantastic that individuals with abnormally short stature (e.g, around 4'10" or shorter) can have limb lengthening done. For those individuals it can be life alternating. When I say that I am against limb lengthening, I am referring to indiviausl who want to have it done but are already a normal height (E.g., 5'1" like myself, 5'4", 5"7, etc.).

Home already

Hello everyone! I am pleased to say that things went well. Things didn't go exactly as I expected/was previously told that they would, but everything worked out for the best. I dohave one big concern but I am not sure how much of a concern it really it - like many things it depends on attidue and perspective. I need to think about how I am going to approach it. After all, everything is all relative. I am happy to be back in my own bed in m own clothes (not some skimpy hospitasl gown). It is amazing to think that I left the house at 6 am and within six hours I was back home (got back exactly at 12pm). We drove 45 minutes to the hospital, went to same day surgery (prep took two hours), surgery itself which was insanely short, less than an hour in recovery, a brief time spent back down in same day surgery, grilled cheese sandwiches down in the cafeteria followed by a 45 minute drive home and what I think will be lot s of sleep. So here we are; by far the easiest thing I have been through so far. I will update more when I have more energy and am feeling less stoned (thank you morphine!).

Here we are!

Traditional morning of surgery picture. It's like a habit I can't seem to break. There is no doubt that there will be another one coming in a few weeks when the fixator actually comes off. Odd to have yet another surgery from which I wake up with that thing still stuck to my leg. Time to get dressed now; leaving in half an hour. I hope you all have a happy Wednesday... you know what day it really is. It starts with H and rhymes with lump!)

Okay, that joke was mildly inappropriate. I am not sorry. Blame it on some pre-surgery nerves. Even the most serene of us can't escape them.

Still in my Christmas candy cane and elephant pajamas. Yeah, that's right. My pajamas both have candy canes and elephants on them. I bet your pajamas aren't that cool.
Time to go conquer surgery number seven!

Still Awake

A really quick thought in the wee hours of the morning. When I found out that I would be having surgery in March, I new that it would happen soon. And soon meant within the next one to two weeks. I got lucky and had it done a mere seven days later. Before that surgery I posted something about wondering if there is an ideal time to have to wait before surgery. A week was not that ideal time frame - it gave me way to much time to think, to consider what could go wrong and how much I actually didn't want surgery. This time around, I have even less time - five days. Between finding out that I would need surgery and having the surgery itself, there are about 120 hours. That's not very much time (and I haven't been counting them this entire time! Don't worry, I haven't lost my mind like that quite yet). That's hardly any time at all. It took a good day and a half to two days just to process everything, which brought us to Sunday. Then there was a day of two of realizing what was going to happen, lets say half of Sunday and all of Monday. Which brought us to Tuesday when surgery was pretty much upon us - no more time to think, just get on with it. To be honest, I slept through mos the day anyways. And now it's almost time to head to the hospital (a little under three hours). I hated waiting a week; there was way too much time to think. But anything less then three to four days wouldn't have given me much time to comprehend things. I therefore say that I think the ideal time for needing surgery fairly rapidly is to have it five days after you find out. There is obviously the chance that this is all BS or fueled by my narcotic addled brain, but I don't think so. I like five days. I can handle five days quite well. Seven is quite another matter.

And you are probably thinking, what a strange post. What a weird idea. I am rambling. I don't think I am scared or anxious, but I am a bit nervous. And I ramble when I am a bit nervous. Just think, in seven hours it will be over and in within fourteen I will be back in my own bed.

PS. Thanks for putting up with this nonsensical mess. XD

Surgery tomorrow

I am having surgery tomorrow morning. It is a very last minute thing so there hasn't been very much time to mentally prepare. Fortunately, I am used to the whole night before/prep/surgery routine so that has eased much of the anxiety I have had leading up to surgeries in the past. There will always be risks with going under general anesthesia, but for the most part I am relaxed and ready to do. Perhaps too much so. I'm never sure how I should feel going into surgery anymore because I've been through so many of them... this is number seven. Good old lucky number seven.

During my appointment with my orthopedics surgeon last Friday I had x-rays taken. As is outlined by one of my most recent posts, the x-rays have shown that I have had more unwanted (but not as bad this time, thankfully) bone growth. This changes how we do things a little bit. On top of that, my surgeon has finally decided that enough is enough with my manky pin site. The pin has to go. So that is what surgery tomorrow is all about - removing the misbehaving pin and using a fluoroscope to take some trippy pictures of my leg. I didn't have a choice about surgery - the pin has to go no matter what - but I was able to choose what we get to do: pin comes out or entire fixator comes off. We need that fixator to keep everything compressed together - this is what helps the end of the bone knit together. My surgeon said we could deal with the consequences either way, but I am not a big risk taker so I have opted to keep the fixator. In my mind, that carries the least risks and the biggest chance that I will be able to return to school in the fall. It is important to bare in mind that there is no right or wrong choice her; one choice does not carry a greater chance of success or failure than the other. It really comes down to me feeling okay with my decision.

It has all been on pretty short notice - so much so that my surgeon "put it on the board" so that it would be treated as an emergency. Is it really and emergency? I have know clue. I don't really think so although that one pin has to come out as soon as possible. My surgeon thinks that it is infected but the antibiotics I am on are holding it at bay, in the soft tissue. We don't want it spreading down into the bone - then we would be right back where we started last August. So short notice and on the board (is there really a board with my name on it in the hospital somewhere? Has it been there all weekend? Or is this more some type of list and names get taken off/put on an actual board the day of? So many irrelevant questions!). As a result, I didn't have to do pre-op again. Such a waste of time anyways; really nice that my surgeon wanted to save me those few hours of my life.

I'm pretty calm about the whole thing - no big deal, go in, get knocked out, wake up, and go home sans one pin and with the promise of cool x-rays the following week. I have done my regular "night before" routine - clean sheets on bed, tidied up room (not that it's ever messy), ate something before mid-night. I'm about to hope in the shower, then a cup of tea and a good book before bed. Yes! I actually think I can sleep this time, and I can never sleep before surgery. I am that relaxed. I'm not even going to pack an over-night bag just in case - that is how certain I am that everything will go smoothly. Back in my bed by tomorrow evening.

This has been rather a hurried post. Perhaps I am a bit nervous after all. I might post something more detailed later on if I can't sleep. If not, I will post the x-rays from Friday after surgery.

I would ask you to tell me to "break a leg", but in a way that's already done; no need to be redundant and do it again. So wish me luck instead =)

Un-adult

Today's post is super short. Hardly a post at all.
Sometimes it's good to take a minute to breathe and de-stress.
That's means un-adulting. I don't think that is a work, with the prefix or not.
But I'm going to use it anyways.
What do I mean by un-adulting?
Wearing a minion t-shirt and making zombie/dinosaur impersonations to your webcam.

Yeah, that's right.
I'm a fixator wearing, human-flesh eating, hobbling dinosaur child.
I think I achieved my goal.
And that's it.
Night!

The Perks

Life with an external fixator kind of sucks. You can't walk. None of your pants fit anymore. Well, at least not the ones that make your butt look good. Showering involves duct taping a garbage bag onto your leg; tape which later has to be take off. This can only be described as ten times more painful than ripping of a band aid. You're always the most popular girl in the room but for all the wrong reasons - everyone stares at you but nobody actually strikes up a conversation or makes eye contact. And then there is all the unsolicited advice: "My cousin twisted his ankle one...", "Have you tried icing your leg?", and  "It's important not to get addicted to the painkillers. Why don't you try Tylenol?"just to name a few.

Life, however, is not all doom an gloom. There are certain things that I can do that nobody else can - they are unique to my situation (and obviously to anyone who has an external fixator). For lack of a better word, I'm going to call them perks. So without further ado, here are five perks of having an external fixator:

1) When I get up in the morning and get pants on, I have achieved something. Yeah, that's right. I achieve something by putting on pants. Why is that an achievement, you might be wondering? Because I have to work through my dilaudid induced haze, get my self up and out of bed, rummage around until I find pants that actually fit, and then get them one without snagging them on on of my fixator's pins or hurting my leg in the process. After that I have to sit down and give myself a minute to pause before I do anything else. What do you have to do in a day to achieve something? I bet it's not as simple as putting on pants. When I do that, I'm done for the day. Easy as that.

2) I have an excuse to by way more skirts and stretchy pants then I could ever need. Last year I had a shopping spree just for comfy clothing to wear while recovering between surgeries. There is no guilt or shame involved in this. Everything is justifiable when you have an external fixator. Why? Because you are in a shitty situation and deserve to be a little bit happier or more comfortable. Could I do this without feeling guilty if I were healthy and already had a closet brimming with clothes? Not so much.

3) I can use the handicap button to open doors without feeling guilty about it. Meanwhile, I can glare at the asshat who thought it would fun to run at said button and kick it with his foot. I don't know where your shoe has been, so I really don't want to press that button after you do that! So I will sit here in my wheelchair and glare at you.

4) I never have to worry about finding matching socks. And if by chance I am wearing socks on both feet and they don't match, it's perfectly excusable barbecue who is going to judge the girl with giant metal pins sticking out of her leg?Nobody. They might even complement me for trying to make the best of a rotten situation.

5) Shock value and impressing people. This depends on the person involved. Most regular people out on the street are shocked when they see my leg. They don't know what they are looking at, have never seen it before and have no clue how to comprehend it or react to the situation. Now, this is awkward for them and to some extent I do feel sorry for them. But then I also don't because they only have to look at it for a few seconds whereas I have to live with it 24/7. It kind of feels good - it puts other people's lives in perspective and occasionally gets me some empathy. But the main point is, how hard do you have try to look weird enough or what crazy stunt do you have to pull to shock that many people? I can do it instantly without even trying XD And then there are health care professional - nurses, doctors, surgeons, residents/students, physiotherapists. They see my leg as something cool and rare. They want to get a close look at and here my medical history because it is interesting. They want to take pictures of my leg. I am never the most popular girl in the room, like ever. I'm a wall flower - the girl who stands nervously in the corner trying to muster up the courage to talk to someone. But I can impress the medically trained people without even opening my mouth. I think that's quite impressive and more than most people can do.

So these are some of the perks: getting pants on is the crowning glory of my day; I can guiltlessly have a shopping spree; I get to use the handicap button; my socks never have to match; and I can shock/impress people without uttering a single word. It doesn't quite make up for having metal pins drilled into your bone,but it helps a little.

On another note, is guiltlessly actually a word?

A very brief explanation

It's going to be a short post today. I don't really want to get into details about whats going on with my leg and what we are going to do about it yet, but I don't want to leave everyone in the dark either.

In one of my previous posts, I listed three possible things that I thought might be going on with my leg: 1) external fixator is broken 2) new heterotopic ossification 3) premature consolidation of new bone. My bet was on number three but it actually ended up being numberw to... and three, sort of.

What has happened is that there was bone growth, quite a bit of it, at the docking site again. This time I got lucky because nothing splintered and started growing into the back of my leg. So no heterotopic ossification. Yay! This new bone, however, grew pretty damn quickly. It was less then three weeks between surgery and the x-rays on March 29th. During surgery, my surgeon completely cleaned out the gap at the bottom of my legs and made sure that the edges of bone were smooth. In that time, however, the whole thing filled up again. Not only that, but it hardened so much that I couldn't make adjustments to the fixator anymore - the new bone was in the way so the pins were bending. So that leaves us somewhere between options two and three. Not a heterotopic ossification but unwanted bone growth none-the-less; Not premature consolidation of the new wanted bone, but premature consolidation of the new unwanted bone at the wrong end.

Bummer. That being said, I was really expecting number three, so although it wasn't good news that we got it sounded good in comparison. Now we have some hard decisions to make about what to do next, and that's more a matter of weighing two difficult issues and seeing which comes out the winner and gets to be treated first as a reward than following guidelines or looking at case studies about this kind of thing... there literally are none.

And that's it, really. Not good but better than expected. I do have to make a decision on what to do by Monday, so that is a bit stressful. Who am I kidding, very stressful. I'm coping with it by not thinking about it. I'm sure I will regret that come Monday morning when I have to call my surgeon's office. But it is what it is. In a way it doesn't matter what I decide because there is no way of knowing what is best and I will have to live with the consequences, both good and bad, either way.

I hope everyone else is having a good weekend and want you to know that I am fine: I went to Ikea yesterday and bought a polka-dot tin and today I had smarties for breakfast. See? Totally fine. Night!

Lots to ponder

Today's appointment with my surgeon went differently than I thought it would. I'm not sure if what came out of it was good or not, it really depends on the perspective I take and what specific issue I think weighs the most at any given time.

We have several concerns that we are trying to balance - doing this feels like a juggling act with way too many balls. As a result, we are at a point where we have to make a pretty big decision on how to move forward. Any decision regarding treatment will have both positive and negative consequences. Making a decision ultimately means having to give more weight to one issue but in reality that doesn't really seem so possible to do. I mean, how do you ever decide which issue could cause the most damage and therefore should be more urgent to treat than the others when all the issues could in fact cause damage? There is no magic formula that will determine what issue will cause problem or when they will happen. In the end, its just a matter of choosing the issue we think is most necessary to treat straight away and feeling comfortable and okay with that decision

There isn't really any literature we can go to for advice. No case studies either. Fixators, after all, are rare things. My surgeon said that there are doctors in the province who do this stuff for kids/teens, but it is really uncommon for adults. He then said that he doesn't actually know any other surgeon in Ontario who works with adults who need fixators. So he's kind of one of a kind, and we are lucky to have him! But, that does mean that we are making a decision based solely on the information we have scraped together of the interwebs about growing bone over the last half year and the information provided by my surgeon. We don't have the option to get a second opinion or talk with others who have gone through this. We have to trust that he gives us the best advice possible (and we totally do). But in the end it is my decision and I feel woefully inadequate to make it. What might be a simple thing now could turn into a much bigger problem later on. We just have to make a choice and hope that it was the right one. One we can live with.

I'm going to think about everything a bit more before I post about it. For now, here is a picture of me out for tea at the Prince of Wales hotel with my mum during the Easter Weekend.

One day, I won't be this pale anymore!

X-rays from last week

Last week Tuesday (or maybe Wednesday... morphine brain is a forgetful brain) I had another appointment at the fracture clinic. My surgeon was out of the province, so I was going to see one of his colleagues. I was excited to go because I was due to "dock" soon. Docking refers to two ends of bone making contact. At this point, the bone transport process is over and the compressive loading stage begins. We expected that I would dock around March 31st. It is really important to keep an eye on this because the ends of the bone have to have smooth surfaces to connect properly, hence the appointment with another surgeon.

Unfortunately, the x-rays taken (the first since surgery on March 11th) did not show what we were hoping for or, and it really hurts to hear these words echoing in my head, what we expected. The x-rays should have shown a very teensy weensy gap between the end of the bone, about 2 mm wide. Instead, the gap was much large - the ends of the bone were almost 1 cm apart. Whoa? How on earth could that happen? To say it was disappointing was an understatement. On top of that, we didn't actually get to see a doctor. The ortho technicians and nurses were wonderful,as usual. But we really needed a doctor at that moment. The nurse I saw did send my x-rays to my surgeon though, so we hoped to hear back from him.

Here are my x-rays.

Beyond frustrating! The week before my surgeon had been talking about removing the damn thing mid to late April. Obviously that won't be happening now.

After we left the fracture clinic, mum bought my some tea from the hospital cafe. Then we sat in the courtyard in front of the hospital and I promptly broke down in tears. Crying in public. I felt awful. All the different possibilities were running through my head and I didn't like any of them: broke fixator? Probably not, since I could still make the adjustments and nothing seemed misaligned or anything. New heterotopic ossification? That would be awfully soon after surgery. Premature consolidation? Bingo! Most likely option as my bone had been growing quite fast (hence the heterotopic thing to begin with) and I had to stop turning that week before surgery. *sigh*

The next day, I think Wednesday, I noticed that there was some resistance when I did the turns. There had occasionally been a tugging sensation below my knee the week before, but I wasn't sure what to think of it. The added resistance was troubling and made me concerned.

On Thursday morning, around 8:30 am, the nurse I saw on Tuesday called. The surgeon had contacted her to pass on a message: "keep turning".

Then, over the next few days, I began to notice my pins bend. By Sunday it was quite noticeable and causing pain so I decided to stop after my morning turns.

On Monday morning I called my surgeon's office, as I already posted about, and was told to stop making adjustments. And that is where we are. At physio today, my physiotherapist was quite shocked to see the bent pins. They are really irritating the tissue at the bottom of my leg/near my ankle.

I suspect that there is premature consolidation, but only tomorrow's x-rays and the conversation with my surgeon will tell for sure.

On a related note, it is really difficult to get a hold of my surgeon or anyone who knows anything about fixators when something goes wrong/if I have concerns. This is not my surgeon's fault and he is still as amazing as ever. But because external fixators are rare and he only has a few patients who have them per year, there is no special fixator clinic or dedicated staff just for fixators. If things go wrong and my surgeon is away, I can't even call his office because the office is closed when he is gone. The only thing to do is go to the ER where the doctors will tell me that I have to see my surgeon. At best, they will try to contact my surgeon, but that is not always possible. It is really rather frustrating. That frustration is made worse when I hear about other people in other countries who have a dedicated team that specializes in external fixators and who they can call at any time. People who are literally given their surgeon's/consultant's e-mail address so have direct access to him/her when questions or issue arise. Meanwhile, I'm lucky if I can get a hold of my surgeon through the ER department. *sigh* Rant done. This whole experience is a giant lesson in patience.

Let us all keep our fingers crossed for tomorrow. If the bone has prematurely consolidated, I will likely need more surgery. We don't want that!

Some fun stuff

Today's post will be a little one filled with some fun things that have been going on in my life recently. Given the situation with my leg at the moment (read: bent pins and stopping the turns) and the appointment with my surgeon tomorrow morning, I think the next few posts will be a bit heavier. Right now I could use some fun and cheering up.

My mum and I have been carrying out an experiment of sorts over the last few weeks. About a month ago we bought an incubator from a farm supply store and what we hoped were six fertilized eggs from a local quail breeder. We monitored the temperature and humidity of the incubator and turned the eggs over twice a day for sixteen days. We also had store bought eggs but didn't expect much of them as store bought eggs are refrigerated, which kills whatever is in the egg. Nothing came of those eggs in the end but... three of the eggs from the breeder hatched! It wasn't in time for Easter, but that doesn't matter. Baby quail are little balls of fluffy cuteness!

We have been told that they make very good house pets and are more than happy to sit beside you on the couch as you watch t.v. XD

My massive cross stitch project is coming along quite nicely. You know, the one I started after surgery in August and have mentioned countless times but always somehow forgotten to blog about. Yeah, that one. It is almost done. I have been keeping track of the amount of time I have worked on it - 480 hours so far, with another forty to fifty to go. Almost there! It is a blanker with twenty squares to fill in on it; I have filled each with a different design/image. It has been rather difficult material to work on because it is not even weave or Aida fabric. As a result, I have had to get a bit creative when it came to fractional and back stitches. Despite this, I am really happy with how it has turned out. Once it is complete, I wanted to get some nice fabric to back it with so that I can actually use it and won't end up looking at the underside of it or having anything get caught on the thread underneath (because we all know that even the neatest cross stitcher out their can't make the backside of a project as lovely as the front). I don't want to post pictures of the whole thing until it is done (I am currently adding a final touch to one square and then only have one more left to go!), but here is a sneak peak:

As always, I had physiotherapy this afternoon. We weren't really able to do anything because we don't know what exactly is going on in my leg just yet. On top of that, the bottom two pins are causing quite a bit of irritation because of how they have bent - putting more pressure around the muscles in my ankle and in general causing a lot of tenderness. Despite doing my regular exercises over the past week, I still cannot bend my toes and the stiffness in my ankle is increasing. My physiotherapist is as new to external fixators as I am - I'm her first patient who has one! She would rather we hold back on some things until we know exactly what is going on.

On a positive note, we did have a lovely conversation! I often find that physio is as much about getting out of the house and interacting with other people as it is about the exercises themselves. It helps me feel a bit connected to the rest of the world and gets me out of the house for a bit.

Speaking of which - my mum and I went out for about an hour after physio. We parked downtown close to a side street with lots of lovely shops. We went to the magazine store, a consignment shop I really like and a craft store. I got a lovely brown sweater (4$ I love spring sales!), some cute flower hair pins and a little book with instructions and patterns to make various crafts.

I finished off this evening by working some more on my blanket and snacking on some smarties. Now it is time to wash my hair and crawl into bed with a good book. I have to be up bright an early tomorrow morning for the appointment with my surgeon. The drive is actually quite lovely and we have done it some many times that it usually takes 40-45 minutes now instead of an hour. I am bracing my self for bad news as I have my own speculations about what is going on in my leg, but we won't know anything for sure until new x-rays are up. Keeping my fingers crossed!