My day

I coloured today; that is all I did.

I have felt tired and a tad bit loopy... loopy enough for my family to notice and comment that I am not fully myself. I was also rather pale. It doesn't seem like that would be possible because I am generally quite pale, but it is what it is. I just felt off, I don't know how or why but do know enough that I didn't feel like my usual self. Hopefully tomorrow will be better. On the bright side, at least a day of colouring is relaxing.

Physio isn't all hard work and no play

I had my second physio therapy appointment on Thursday. The week before I had gone for an initial assessment and to figure out what type of exercises would benefit me the most (somewhat -more like majorly- limited because I am not allowed to bear weight on my right leg, but it was last Thursday that I actually got said exercises. In the meantime I have been doing the ones that the home physiotherapist I saw in December had suggested. I had been doing about five of the seven since December on a daily basis.  I felt like the other two were not helping and caused more pain than actual benefit, so I hadn't bothered to continue with those. Interestingly enough, those were two of the new exercises that my new physiotherapist recommended. Accept this time there was a big difference - the physiotherapist actually explained how those exercises would help me and why. Then she demonstrated how to do them herself, after which she talked me through doing them myself and gave me pointers on how to do them properly, like pushing my upper leg downwards while bringing my knee upwards and extending my leg as much as possible when it is supported by a pillow or sucking my belly button towards my spine while trying to lift both my hips in the air and keep them even, which is quite tricky when you can't use one leg to complete that exercise.  As a result, I am better able to complete the exercises in a beneficial way and I understand exactly why I have to do them. What a difference a new set of instructions can make!

Physio is a lot of work. My muscles are already stiff sore from all the disuse over the last five plus months but now they also hurt because they are being forced to work and do things they haven't been able to do in almost half a year. It is therefore no surprise that I am exhausted once I have done them all. Heck, even trying to bend my toes ten times in a row is tiring.

That being said, it is both an exhausting  and exciting kind of tiring; I know it will help me achieve my ultimate goal of being able to walk sans crutches. And physio isn't only hard work! As previously mentioned, on Thursday the physiotherapist demonstrated a a series of exercise. One of them had already been shown to me in December but I didn't know why I was doing it and, quite frankly, it turns out the physiotherapist hadn't explained how to do it that well. It involved me lying on a flat surface (back straight, not arched) with my left knee bent. I suck my belly button down as much as possible while lifting my butt of the ground. This is usually done with both knees bent, but I am unable to do so because I can't weight bear. As a result, both my hips do rise up into the air, but unevenly. The left hip rises much higher than the left. By sucking my stomach in, I am better able to keep both hips even. But anyways, here is the conversation that followed:

Physiotherapist: This exercise would help you work on your core.
Me: I don't have a core; I have a place for cake!
Physiotherapist: *bursts out laughing* Well, we are going to get you a core.
Me: That sounds good, as long as there will still be room for cake.
Both of us burst into laughter again.
Physiotherapist: There will always be room for cake!

We laughed a lot. Obviously I have been unable to do much since surgery in August, and even before I was limited because of how awful the bone infection made me feel. I look forward to being able to take long walks and bike once I am better, but for now I am completely out of shape. I am happy with my body weight and am not overweight, but I have no muscle/strength/endurance what so ever. But I am adamant that be it now when I am unable to do much of anything physically or in the future when I am back to biking and walking (perhaps swimming too), there will always be a place for cake.

Speaking of cake, there are a lot of health nuts out there. Don't get me wrong, eating healthy and watching what you eat is important. I mostly eat multi grain bread (with seeds for added fiber), don't drink soda, have cut out most of the salt in my diet, and try to get a balance of all the food groups (although I could always eat more vegetables). My diet might not be the healthiest in the world, but it's pretty good. Anyways, back to the health nut. We have all met the people who refuse to east sugar, sweets, etc. I am not one of them. There are people who view there body as a temple and therefore they refuse to put anything unhealthy or unnatural in it. My response to that? I am not one of those people. My body had clearly demonstrated that it is not a temple. If it was, I wouldn't be sitting here dealing with the aftermath of a decade of bone infection. No, my body is definitely not a temple. I will put whatever I want in it!

That usually elicits a good laugh from people and, regardless of all else, it makes me laugh and poke some fun at my situation. And sometimes, the only thing you can do when you can't control your own health/body is to fall back on a twisted sense of humor. XD

Tears and Jealousy

The highlight of my day - listening to the Hobbit soundtrack while doing my pin site care. Nothing like listening to the music from that scene where Gandalf and the dwarfs fight those cunning orcs in their underground lair... sly little buggers. Seriously though, movie soundtracks make pin site care seem like an even more daunting (or is that exciting?) task than cleaning an open wound with an over-sized q-tip dipped in hydrogen peroxide already is. You should try it sometime; I highly recommend it! Not...

The last two days have been rather blah. Except blah is not the right word. They have been lonely and dull and repetitive and empty, looming. I wake up every morning and think "Great, another day. How will I fill the hours before bed this time?" The days loom ahead of me, endless. I don't want to be doing this anymore. I want to walk. I want to carry a cup of tea. I want to be able to sit down comfortably and relax. To get up to go to the bathroom and just walk... not grab for my crutches, to be able to make my bed in two minutes instead of ten, get dressed without the ado that is getting a pant leg over my pins/fixtor and neatly folded under my knee. Wanting to be around others instead of lonely and isolated sitting at home all the time. Want! Want! Want! I want all of these simple things I would never have thought about if I was healthy. But more than anything else, I want to wake up and not have to think about my leg and it's (and therefore my) future. I don't want to worry about bone growth and pin sites and infections or best/worst case scenarios. I don't want to be doing this anymore.

So there were a lot of tears, both yesterday and today, but more so today. And I am not talking holding back tears welling up in my eyes or letting one or two run down my cheek before I mop them up with a tissue, let out a few sniffles, and get on with my day. I am talking full on hard deep overwhelming crying, reserved for those moments you just don't think you can handle any more. Crying instigated by the most insignificant things. Crying that has nothing to do what it going on in that exact moment and everything to do with feeling overwhelmed and drained and exhausted, tired of having to care and bare in mind the daunting things that are still to come. It was a much needed cry; my mum lovingly gave me a shoulder to cry on, followed by many hugs throughout the day, and occasionally a few more tears. And then, when I thought there were no more tears left, I cried a bit more while doing my second dressing change of the day while listening to that soundtrack of a troupe of dwarfs fight off a hoard of orcs, rubbing my open skin with hydrogen peroxide and pondering the absurdity of it all. 

And on top of everything else - crying because I am jealous of my best friend and then some more for feeling guilty about feeling jealous of my best friend. My best friend is, well, my best friend. She has worked incredibly hard over the last few years and now is renting a place with several of her friends. She is incredibly excited about this and wants me to come over and have a look (which I am doing tomorrow afternoon). And I am jealous, so incredible jealous. She can walk and I can't; she can work and I am unable to; she has her own place while I had to move back home because of  illness; she has the ability to go and do what she pleases, an ability I don't have as a result of the inherent limitations of crutches and external fixators. I am not jealous of her in a bad way, like wanting a job promotion someone else got and then loathing them for it even though they earned it. No, I am jealous as in I am really happy and excited for her because she worked so very hard and earns every last bit of it but I wish I had something like that for myself too, instead of sitting at home these long seemingly endless months regrowing a tibia. The thought alone of visiting a friends reminds me of everything I don't have right now and everything I a loosing out on, and that makes me incredibly sad (along with jealous). And then I feel guilty for feeling jealous because my friend can't help that she is healthy and I am not. It makes me feel like I am not a good friend =( Add all of this to everything else I have been feeling and going through (because let's be honest, I would be lying if I said that having giant metal pins sticking out of my shin is not even the least bit traumatizing), and it makes sense why I sometimes feel down and burst into tears.

I know that I will probably feel better tomorrow and that I will likely be back to my normal cheerful self. But everybody needs a good cry and a small pity party at some point. And in my book, having an external fixator and the fact that I haven't walked without crutches in five months are two very valid reasons for having that pity party. Let the misery commence!

On a brighter note, I managed to put clean sheets on my bed (all by myself, thank you!), have a nice relaxing steaming hot shower (albeit with a garbage bag taped over my right leg) and snuggle up in some warm clean pajamas (which one day will once more not have to be manipulated over a giant piece of metal stuck to my friggin leg). Comfy and clean make for a happy me. Typing all this out alone has helped me better. Now on to read some Harry Potter before bed, hopefully followed by good dreams and a pain free night, and all will be bright and shiny in the morning.

I want to bend my toes! The start of PT

Below is a video of me trying to bend my toes. Some attempts are better than others and all attempts take a considerable amount of concentration. There is a thing I can do swinging my pinky toe at around the 25 second mark that helps me bend my toes a bit more. This is, however, not how one usually (or ever for that matter), bends their toes when they walk. It is obvious that there is work that needs to be done, and part of this might just come down to my fixator's pins interfering with normal muscles movement. Fingers crossed physio will help and everything will return to normal once the fixator comes off.

When I say my orthopedic surgeon just over two weeks ago (Jan. 8th), I brought up the subject of physical therapy with the hope that he would write my a script and send me on my way. He did not fail to deliver! Since coming home from the hospital with my external fixator on December 1st, I have had three visits, all in December, from a home physical therapist. The first time she came she gave me some simple exercises to do, the second I mentioned that I somehow pulled a muscle in my right knee so she told me to take it easy for a bit and the third and last time she told me to continue to do the exercises she originally gave me and that there was nothing more she could do for me at the time. The exercises she gave me included bending my foot up and down, moving my leg outwards/inwards and up/down to keep my hip muscles moving, and bending my knee. The purpose of physical therapy is to keep my muscles working as much as possible and to prevent muscles atrophy. These are real concerns when a limb is immobile and goes unused for months on end. They are even bigger problems when it comes to external fixators. First, fixators hurt, so getting enough motivation to move is already difficult, especially if you feel like you aren't getting anywhere; movement usually causes pain. Second, the pins attaching my fixator to my bone push aside muscles and nerves. For obvious reasons, moving my knee, ankle, or leg in general causes the nerves and muscles to rub against the pins (which in turn prevents the muscles from returning to their normal position). Uncomfortable to say the least! And third, along with an external fixator, I have an IM nail, or intramedullary rod, that was inserted during my latest surgery on Nov. 25th. In order to place an IM nail, which is inserted into the tibia, an incision is made over the knee and the knee cap, along with a tone of muscles and ligaments with it, is pushed completely to the side. As a result of this, there is a lot of scar tissue building up in my knee, preventing my leg from being able to straighten the entire way. Read a lot of stiffness and discomfort. The exercises that the home physical therapist gave me haven't been helping much; I have been noticing a gradual but steady increase in stiffness and loss of range of motion. When I brought this up at my latest appointment with my orthopedic surgeon, he mentioned that some physical therapists do things differently and that someone else might be able to help me more. So my wish was fulfilled and I walk... erm, hopped away with a prescription for physical therapy.

The following week I started doing some research on physiotherapy clinics in the vicinity of where I live. A quick search on Google brought up a sizable list and, after going to numerous websites for individual clinics, several clinics made the short list of places I wanted to consider. Meanwhile, my mum was also doing her own research. She read something online that suggested that my physical therapy appointments might be covered by OHIP. I was skeptical, because everyone I know who has ever hat physical therapy has had to pay out of pocket or through private insurance. Regardless of my doubts, we brought it up with my home nurse on the Thur. 14th. She didn't have any answers to my questions, explaining that home nurses are not instructed about the ins and outs of physical therapy, but she did give me the number for my case manager. I tried calling my case manager that day, with no response, and again at the start of last week. I still have not gotten a call back. On Tuesday I did, however (on my mother's urging), call a different number of the company that provides home nursing and got through to a lovely woman who knew all about what I needed to know. She thought that I would be eligible for OHIP covered PT and gave me the number of the only OHIP funded clinic in the city I live in. That whittled down my list of options pretty fast! Fortunately, the clinic she mentioned was the front runner on my personal list anyways =)

I called the PT clinic right away and explained my situation to the receptionist. She confirmed that because I need physical therapy due to surgery and because I had stayed overnight in the hospital I am eligible for OHIP covered physical therapy. This is wonderful news because my surgeon had already mentioned months earlier that I would require some pretty serious physical therapy, which can add up fast money wise.

My first appointment, for an initial assessment, was last week Thursday at 3:30pm. I arrived early in order to filler out some paper work. While doing do, I heard the receptionist tell someone over the phone that there were no more OHIP covered spots until April. When leaving my appointment and waiting in line to make a new one, I overheard the receptionist tell the gentleman in front of me the same thing. And then there is the realization that hits you - that you probably got one of, if not the last OHIP covered spot for the remainder of the year funding wise (rolls over in April). To think that a matter of a day and a half could make the difference! Not to say that other people don't need physical therapy as well, but given the external fixator and, up to this point alone, not having been able to walk for five months, I definitely need a lot of physical therapy and, therefore, OHIP coverage. If I only needed a few appointments, like many people do post-surgery, I wouldn't mind paying completely out of pocket, but the amount of physio I need equates to some serious cash.

The appointment with the physical therapist went really well; she is super nice and seems very knowledgeable. She, like my home nurses and the home physiotherapist I saw, has never worked with a patient with an external fixator before and is excited to do so. She had me go through my whole health history, twice (because of how complicated and ongoing the issues with my leg have been). I also had to answer a lot of questions about my health in general. After that she did an assessment of my legs (e.g., skin sensation, range of motion, strength). She explained why I couldn't straighten my leg the entire way, which I described above, and mentioned some areas we really need to work on (e.g., straightening my leg, regaining some range of motion in my ankle, moving my toes!). Last week I felt like I could move my toes just fine; this week, not so much. She explained that this is a significant area to work on because toes play a tremendous role in walking and balance. She also said that by the time the fixator comes off and I am given the go ahead to start walking that I will pretty much be learning how to walk again. This scares me more than any words can convey. Walking is so incredibly important; so freeing. To sum it all up, I will require intense physiotherapy, just like my surgeon had said. On top of this, my physical therapist wants to add exercises that focus on building muscles strength to the ones I was given by the home physiotherapist. These exercises will help me hit the ground running (not literally of course) once my fixator is removed and I am allowed to start weight bearing. Range of motion is not the only thing that matters when it comes to walking and there is quite a noticeable amount of muscle atrophy throughout my leg at this point. In addition, the physical therapist wants to give me some exercises for my back. She explained that humans are not meant to either sit on a chair or lay in bed all day, so being unable to walk is problematic. Furthermore, walking with crutches can cause some overcompensation issues for the unaffected side of the body (left hip/leg). It will be great to get some exercises for all this in addition to the ones for my knee and ankle. My mum and I left the appointment on a good note and I am excited to go back next week which is when I will be given exercises to do!

If it wasn't already evident by everything I have said up to this point in this post, I am rather ecstatic about getting physical therapy. During the entire decade that I have been dealing with the aftermaths of my broken leg and the chronic bone infection, this is the first time that physio has been offered to me. I could really have used it in 2006 after my leg had been in a cast and/or walking boot for ten months and I had surgery to re-break my leg, and again in 2008 after hardware removal. It wouldn't really have been necessary in 2012 because the surgery I had that year was relatively minor, although after being as sick as I was in 2011 and 2012 with the chronic bone infection it might have been good to get some physio to help regain some overall strength. But then, I am saying that with hindsight and half a nursing diploma behind me. Obviously I couldn't get physio after surgery in August because I was in a cast. But I am getting it now  and that is what matters =) I am much more impressed with my physiotherapist at the PT clinic than I was with the home physiotherapist (not that she wasn't good, but her scope of practice was definitely working with elderly people, who are the most likely to require home physio and are often able to do a lot less, which is the opposite of what I need - hard core physio to get me back to a normal active life). I am really hopeful that physio will play a tremendous role at getting me up and walking and as close to normal as possible after so much surgery.

The story of two thousand

I use a variety of medical supplies in order to apply the dressing around my pin sites. My stash or, rather my hoard of medical supplies includes sterile woven sponges, sterile non-woven sponges (two different sizes), non-sterile gauze, sterile water, alcohol wipes, hydrogen peroxide, suture kits (for the scissors), hand sanitizers, and lots of medical tape (my nurses get me the nice pre-perforated stuff).

My hoard of supplies also includes cotton tipped applicators. I use quite a few of these on any given day, depending on how gunky my pin sites are or if I need to do more than one dressing change per day.

I do dressing changes on a daily basis, so you can only imagine how many supplies I got through or, I suppose, what the garbage man would think if he knew what was inside my trash bin. The vast majority of my supplies are provided by my home care nurses, without any cost to me. This is wonderful because I do not have to order thing (or pay for them!), or have the hassle of remembering when I will run out of individual items.

There is one item, however, that my mum and I order ourselves. I am talking about cotton tipped applicators. In other terms, an over-sized Q-tip on a giant stick. And this is where we get to the story of the two thousand. Before I was discharged from the hospital after surgery number five, the hospital staff showed me how to do my own dressing changes. The lovely nurses on the orthopedic ward used these handy cotton tipped applicators to clean the gunk from my pin sites (much easier than trying to shove some gauze, let alone a finger) around the fixator to get at the pins. I was not expecting the home care nurses to provide these for me so I was pleasantly surprised when I found about a dozen of them in a wound care kit that ended up being sent with the rest of my supplies. My nurses, mum and I were thrilled to have these because it made my pin sites much easier to access. The first few days we eagerly used them, one applicator per pin. Using one item per pin site is standard practice because doing so helps avoid cross contamination between pin sites. Imagine that one pin gets infected. I use an applicator or another item to clean the pin, therefore picking up bacteria. I then use that bacteria laden item to clean another pin, thus spreading a potential source of infection. Now imagine that I already have an established infection in one pin site! So one over-sized Q-tip per pin site it was. Except we only had a limited number of packages, two applicators per package. This left us with enough applicator for twelve day. No worries. Just order more supplies, right? Wrong! You are only allowed to order more supplies every two weeks. In the meantime, one of my nurses said she would order us more supplies and that we could poor some hydrogen peroxide into a cup, dip the applicator in it, use it to clean one pin site, and then repeat with the same applicator to clean another site. It is here that I should mention how great that nurse was, because she truly was, and we sadly no longer have her. But my mum and I were a bit baffled about her suggestion to reuse the applicator, given the whole cross contamination thing and all. The following day we addressed this idea with another nurse. She said that we could do it, but that she herself preferred one applicator per site, right along with my thinking. A day or so later, after making due with other supplies to clean the pin sites, my mum picked up my new box of supplies at the pharmacy. When she got home, I excitedly opened the box like a kid in a candy store to find only fourteen packs of applicators. That's right, fourteen packs times two applicators per pack is only enough to clean two pin sites a day for a fortnight, thus excluding the other two pins... What to do? It was clear that the nurse thought we would double dip the applicators as she had suggested.

Double dipping was not going to happen, not in this house. I have already lived with a bone infection for far too long (heck, amount of time is too long, not to mention nearly a decade). I'll be damned if I get another infection just because we were too stingy with supplies. Fortunately, my mum found the very same applicators on Amazon. And here is where, in my book, the story gets funny. A box of one hundred packs (two hundred applicators) costs roughly twenty five dollars, plus shipping and handling. Given that I was using two packs a day, we knew I would need way more than one box. So it would seem that the next best thing would be two but two boxes (two hundred packs; four hundred applicators). But good deals are not always what they seem to be. It turns out that for about fifty five bucks you can buy one thousand packs (two thousand applicators) with free shipping. Care to guess which offer we choose? So no I have ten boxes of six inch sterile cotton tipped applicators. Actually, nine boxes. I have already worked my way through one and have delved right on into a second box.

Because I now have so many applicators, I am free to use as few (well, no fewer than four) or many as I like. On a typical day, in which I only do one dressing change, I go through four packs, which is eight applicators. I use one applicator per actual pin site (the area where the pin comes into contact with my skin), and another for the rest of the pin, because the skin and gunk likes to ride up a bit each day, harden, and crust onto the pin. It can take some effort to get all the gunk off, so extra applicators come in handy. So it is clear that fourteen packs a day would not have been enough.

On top of that, some days I have to do extra dressing changes depending on how much my pin sites have leaked that day. With that in mind, fourteen packs per fortnight would definitely not have been enough. I am very fortunate to live in Canada, where OHIP foots the bill for all of the supplies I get through home care. Although I do wish that we would have gotten more applicators, I am not upset that we did not. Perhaps with a different nurse ordering the supplies we would have gotten more. But then, seeing how little out of pocket expenses we have had, it is no big deal for us to pay for the applicators ourselves. We are thankfully fortunate enough to be able to afford to do so. And this way I can use as many as is necessary, not as dictated by how many someone else orders for us. I should also add that we have not had any other issues with supplies and that all of the nurses I have seen this time around with home care have been absolutely amazing =)

And that is the story of the two thousand. Now I just have to figure out what to do with all the left over applicators once I no longer need them. Two thousand is definitely a large number. I will definitely get through at least six hundred of them, but two thousand? No way... XD

The remembering stone

I was sorting through a box of pictures and postcards last night and found a note I wrote several years ago. In 2012, right around the time I was coming off a fifteen month long stint on antibiotics, my mum invited some friends, a married couple, to stay over at our place for a week or so. Over the previous months, my mum had told them about my chronic osteomyelitis, surgery, PICC line and how difficult things were for me as a result. The gentleman who stayed with us wanted to give me something in order to help and make things a little bit better. Given everything I had been through with the bone infection, receiving something that would make things better was no small feat. So I was quite surprised when he handed me a small, smooth black stone. "What is so significant about a stone that can make things better?"

The gentleman explained that he had been carrying the stone in his pocket wherever he went the entire week before coming over to visit, filling it full of warmth and kindness. He himself also had a stone (he showed it to me, it was whitish-grey). But it was more than just a stone, if stones can be anything more than what they appear to be. Every time he faced a daunting challenge or felt down or in despair, he would pick up his stone and recite ten positive things in his life to himself. Doing so did not minimize his feelings or dismiss what he was going through, but helped him to remember the positive aspect of things, like a ray of sunlight peeking through the clouds. He then said that I could have the stone he had chosen for me on the condition that I make my own list.

I thought of the things in my life that I thought were most worth remembering and in doing so did indeed keep my end of the bargain. For a time I even carried it, along with the stone, with me wherever I went in a tiny little bag. But after a while, the list was set aside and for all intents and purposes forgotten. That is, until last night.

I had forgotten about the list so utterly and completely that it took me a moment to figure out what exactly I was reading. What I read made me want to cry. Here is what was written on the note paper:

"I should remember (that):
1) My family loves me.
2) My room is my sanctuary.
3) No matter what, I am still o.k.
4) Goodness lies within us, no matter how much we doubt it.
5) I am no longer ill - I beat chronic osteomyelitis!
6) It is normal to not always be happy.
7) Early morning and late night bus rides with a good book.
8) Elephants exist.
9) Memories and the world inside my head.
10) Being alone does not mean being lonely.

Number five jumped out to me. I hardly think I need to explain why. The relapse of the bone infection is one of, if not the most difficult things in my life. Beating it the first time was, in my book, the ultimate accomplishment - not something big, worthy of praise, attention and applause, but something incredibly personal and solitary. Reading the list all these years later made me want to cry and smile at the same time. It made me want to mourn all that I have lost or purposefully let pass me by because of the infection. Yet it also reminded me that there is always something positive and encouraging, no matter how little, to fall back on. My family loves and supports me every step of the way; my room is my sanctuary now more than ever before; it is so incredibly important to know that you don't have to be all happiness and smiles and rainbows all the time. So I am sitting here three years later and I wouldn't change a thing on my list.

The thing is that even though I completely forgot about the list, I have carried that stone around in either my purse or my pocket almost everywhere I have been in the three plus years since I got it. I can not to tell you how many times I have pulled it out and let its cold hardness soak into my palm as I squeezed it in my hand and let my fingers run over its smooth surface. Every time I held it, placed it in my pocket, or so much as simply thought about it sitting in my purse, I remembered the man who gave me the stone and the kindness and good intentions he put into it, the thought behind the action itself. And I am reminded that everything will be o.k.

I do not believe that any inanimate object, like a stone, can have an inner quality that influences people or imbues them with good qualities like compassion or honesty. Nor do I believe that such objects can provide one with protection or good health. I do believe, however, that an object can become as significant and valuable as a person desires or needs it to be. If a stone becomes the tangible thing that connects a person with positive ideas or helps people remember what is important to them, than that can only be a good thing.

And in this case, it is not so much remembering ten things that are important to me or holding something that embodies a desirable quality that makes this stone significant to me, but remembering the loving intent of the individual who gave it to me. That somethings as simple as the gift of a stone can have such an influence is incredible. It is not about the object itself, but about the thought and kindness, all the good intentions behind it. And on top of that, solely regarding my current situation, the note I found is a source of encouragement and reassurance. It will be going up on the cork board above my desk. Hopefully number five will be true again one day, once my new bone has finished growing and we know for sure that it is infection free.

A good routine

A sweetheart cookie and Faerie Magazine - I am set for the afternoon!

And I look well put together today! Well, at least from the top up... I still have my pajama pants on. Nice sweater, tiny earrings, clean hair. Sometimes looking good makes you fell good =)

On top of feeling good today, my home care visits have been reduced to once every two weeks. This morning my nurse said I am really independent, which is evident by doing my own dressing changes everyday. Being independent and taking some control of your medical situation is important. From what I have heard, there are many patients who do not want to learn to do things, like dressing changes or PICC line stuff, for themselves. Being able to do something for myself helps me gain a sense of control, which is so important because I can do very much on my own right now. As a result, I feel empowered and am more likely to advocate for my self. I can call at any time, day or night, if things go wrong or if I am concerns with my pin sites. So although I see my nurse less, I still have that safety net in case things go wrong. To sum it all up, I have an established routine and am feeling comfortable with the current situation. =)

Colouring and a not so pretty picture

Unfortunately, the pain that I experienced yesterday did not go away as I hoped it would. Although the nerve pain and discomfort I was having have mostly gone away, my pin sites continue to hurt and sting. On top of that, it looks like some of the pin sites are red and puffy, and the redness seems to have spread along the scar left by my latest surgery (last November). Like many times in the past decade, I am nervous about every sting and throb and am therefore keeping a close eye on my leg. I don't want to be too easy going only to deal with a much larger problem later one. On the other hand, perhaps there is nothing to worry about at all. And that is what bone infections and external fixators due to you - you worry all the time about the slightest things; as hopeful as you get that everything will be okay, there is always that little thought nudging you: "What if the infection is back?"

Despite the pain in my leg, my day started off on a good note. I got a lovely card from my opa's sister in law. It has taken pride of place on my bookshelf.

To counteract my worries about my leg, I have spent a quiet day colouring, which is something I find quite soothing. Last fall I bought a book of postcards by Johanna Basford, the artist behind the ever popular Secret Garden and Enchanted Forest colouring books. There is so much detail in her artwork that the amount of concentration necessary to colour within the lines trumps most of my thoughts about my leg. This is good! Plus, I have some news things to decorate my room with!

Perhaps I will spend the next however many months colouring while I wait for my bone to regrow and my fixator to come off. I have a good selection of colouring books: Johanna Bradford's Secret Garden, Enchanted Forest, Lost Ocan, Enchanted Forest postcards and Secrete Garden Calender; Millie Marotta's Tropical World; an anatomy colouring book by Kaplan; Magic Garden: Fantastic Flowers to Colour; a bird colouring book; and several magazines with flowers and mandalas. Obviously, when it comes to colouring books I am well stocked; between colouring, cross stitching and reading (and perhaps some Latin review), I will have plenty to do over the coming months!

Rereading what I wrote, I make it sound as everything is a-ok, as if there is nothing to worry about and that I can casually sit at home doing nothing but colour for the foreseeable future. If I am honest with my self, and everyone reading this, it is not okay. But more than no okay. It sucks and it's scary and horrible. There is so much worry and even a touch of desperation. I need the fixator/distraction osteogenesis thing to work properly because I don't know how I could keep on coping if things didn't work. There is an unspoken air hanging around the house - the thought that this could not work and then I would be in an even worse scenerio. You start thinking about medical thing that you shouldn't. Obviously we all hope for the best but a decade of things going wrong greatly influences how we approach things now. My mum and I have discussed this, but choose for the most part to let it be. We say that things are okay, that I am okay, but we know that is not one-hundred percent true. But we go with it anyways, because there is little we can do to make it better. We just watch the x-rays and wait, silently hoping that everything works out in the end.

I thought I should mention this as I sit her talking about how much fun it is to sit at home colouring all day. I don't want to give people a wrong impression of the situation. This is not a relaxing holiday. I have doctor's appointments and x-rays, upon which so much is riding. There are metal pins sticking out of my shin, posing a constant risk for infection. I can't wear pants and it is winter (in Canada!). Both sitting comofrtably in the daytime and sleeping are difficult. There is pain and discomfort, worry and fear, stress... and if possible I would be anywhere and doing anything other than I am doing now. As a twenty three year old, an adult, with a university degree and half way into a nursing diploma, I dreamed of so much more at this stage of my life.

So I am sitting at home colouring and cross stitching, binge watching Netflix or reading. I try to relax, quiet thoughts about the future and forget the metal scaffolding attached to my leg. It plain old sucks. Things like colouring and displaying the cards I get make things a bit more fun and do-able. That is how I get through this, and it will be worth is when I can walk again!

Sunny and painful

Today was the first day I felt like I really couldn't cope with my external fixator.

Up until now I have been relatively pain free. This is not to say that I haven't experienced any pain or discomfort since my latest surgery (because I have), but whatever unpleasantness the fixator caused was well taken care of by the long acting pain medication (hydromorph contin) I am on 24/7 and the occasional dose of Tylenol extra strength when necessary. I have had moments when there was a spike in the type and severity of pain/discomfort, but I have usually been able to ride it out. I am not a fan of taking my break through (fast acting) pain medication. I have morphine tablets for when I need immediate pain relief, but they make me drowsy and rather stoned. And unlike other people who think it is great fun to use drugs recreationally and that I have access to these narcotics, I do not like the sensation of being stoned. My experiences with narcotics are limited to medications I have been prescribed by a physician after surgery, so I can't speak for the type of high obtained by street drugs, but I am 100% sure that I dislike the high caused by prescription narcotics. I prefer to be in control of my mental capacities and be fully aware of my surroundings so I avoid taking narcotics if at all possible. Back to my point - if at all possible, I will try to ride out any spikes in pain/discomfort if possible. Usually an increase in pain does not last more than half an hour (usually only a few minutes), so the relief provided my my fast acting med is not worth the six hours of feeling stoned. Oddly enough, I don't have this problem with my long acting medication, but I do have it with fast acting medications like morphine and percocet.

Today was a day full of pain and discomfort. My leg started causing problems in the early hours this morning so I only got a few restless hours of sleep. I woke up at eleven with what felt like extreme growing pain running from my big toe through to my knee; my pin sites stung; something somewhere on my shin felt like it was stinging; and there was bone pain every now and again. I choose to ride things out today, only adding Tylenol extra strength when necessary, but if the pain/discomfort gets worse than it was today I will likely find myself turning to my fast acting medication.

When I saw my surgeon in December, he said that most of his patients are pretty stoned throughout the fixator/bone growing process. I consider myself extremely fortunate that I have experiences as little pain as I have so far (whatever pain.discomfort there was had been nicely taken care of by the long acting drug), but I have always tried to be realistic and remind myself that things could change. Perhaps today is part of that change. Or, if I am lucky, tomorrow will be much better pain wise. I really hope so. And if the pain doesn't go back to my 'normal' level pain, I desperately hope it does not get worse than it was today. The prospect of three more months of days like today is is daunting. Just the thought of it is tiring. =(

I do have several bright notes to counteract the pain issue rearing it's nasty head.

1) I got my hair cut last week Monday. Actually, I got it cut on Sunday but the stylist who did it did a horrible job. And when I mean horrible, I horrendous. I asked for a pixie cut. What I received was not a pixie cut. When I got home, my mum called it the most unimaginative hair cut she had ever seen. There were no playful strands of hair or differences in length and... most confusing to me, the back was long. The whole point of a pixie cut is to be short! I went back to the hair dresser the next day to ask if someone could trim the back up a bit. I was willing and fully prepared pay full price for a new cut. Fortunately, a different stylist was there - one that has cut my hair numerous times before. She asked what happened because I usually have such funky playful haircuts. I explained about the day before and the stylist understood immediately. She said that the woman from the day before had no imagination when it came to haircuts and to never let her cut my hair again. She then proceeded not only to trim the hair on the back on my hair but 're-did' the entire hair cut. She said she couldn't fix things completely, but my hair looks a hell of a lot better than it did the day before. She also said my leg is already kippered out as is so she couldn't leave me with a bad hair cut too! I offered to pay for the hair cut, which she said was not necessary, but I left a good tip. I will definitely make sure to have her cut my hair in the future. Unfortunately I don't have photos from the first hair cut (I didn't want to capture it on film, it was that bad), but I do have photos from the second cut.

I feel pretty tired most days (and look it too), but having a nice hair cut (and therefore feeling like I look better) really helps me feel a bit better about everything.

2) I had to appointments in Hamilton last week: one on Tuesday with my infectious disease specialist, which was a waste of time for the most part, and another on Friday to see my orthopedic surgeon. I have lots of lovely new x-rays to share. I won't update about these appointments tonight, but I will that my x-rays show that things are going as expected! This is wonderful and reassuring news. I am eager to put up a post about with these x-rays in the next few days and another explaining just how my external fixator works.

3) Two trips to Hamilton meant to trips to Ikea, a kind of tradition my mum and I have had ever since I was referred to my infectious disease specialist in 2011. We mainly browsed on Tuesday but I got several great finds on Friday:

Lovely sunny yellow duvet cover and pillow case to brighten up my room as we head straight into the cold Canadian winter. I spend most of my time indoors and even when I got out it is mostly dreary, so this bedding is a nice way to keep things bright.

The Christmas ornaments that were on sale on Tuesday were even cheaper on Friday. Items that may have cost 5$ at the start of the week were reduced to 0.50 $! I was really happy - I got two boxes of white bells (originally 9$ for a pack of six) and four boxes of toadstool ornaments (8$ for a pack of 8). I have a great idea to decorate my room with the toadstool, so this was definitely a great deal!

 Funny story about the toadstool ornaments - I only picked up four boxes. My mum had gone to pay for several itmes while I browsed the "as is" section where the priced down items are. I wasn't expecting to find anythings but, of course, was pleasantly surprised when I found the decorations. I dropped one of the boxes several times and a friendly 20-ish woman helped carry the boxes to the check-out for me. She asked what happened to my leg, so I explained that I had an infection that killed part of my tibia. She replied "Oh, osteomyelitis?" Yes, I said, then a bit perplexed, "How do you know about it, most people don't know what that is?" Turns out she is a medical student. What a coincidence!

After that, mum and I went to the restuarant upstair to eat (nothing like meatballs at Ikea). Before we left I decided to grabe a few more boxes of the taodstool ornamants, but they were all gone! There were 30 plus boxes of them when I was in the store before we ate, but they were all gone by the time we were back downstairs, maybe an hour later. We figure somebody bought the lot of them!

While looking for more boxes of toadstools, an Ikea employee came out with a fresh cart of things for the as is section. I have been looking at pots and pans for when I move out again in September. I found that while a lot of student houses come with a fully supplied kitchen, the selection and quality of cookware can suck. Mum and I had been looking at posts/pans earlier on before we ate. I decided I really liked one set but would wait to buy it later in the year. Low and behold, there were pots and pans being in that cart wheeled into the as is section. Mum saw them and made a b-line for them. There were three pots, all different sizes and with lids, and a frying pan). 5$ each! What a steal. mum grabbed all three pans right away and I decided to get them. The frying pan had a Teflon layer on it, which I don't like, so I didn't want it. Another customer grabbed it straight away. The pots are good quality, stainless steel. We think they were display models, which often are sold after a while at a fraction of the originally price. I will give a good wash and they will be like new. So all I need now is a frying pan! I don't have picture of the pots.

3) Two jokes from last week:

While at Ikea in the cookware secetion I looked at my mum and said "You know you have grown up when you start taking an interest in pots and pans. When on earth did I grow up!?!?"

Comment to my mum last night, after watching sixteen and pregnant on YouTube: "There is something wonderful about knowing that I can never be a teenage mum any more!" We laughed hard about that one XD

And that is it. I am trying to focus on the little things, like new sheets and lots of coluring. One day at a time. My leg had thankfully quieted down a lot. I think it is time to crawl under my bright sunny sheets and go to bed. Hoping for nice sunny dreams and less pain and discomfort tomorrow.

A hope and a smile

This post has taken me some time to write. It started out as a few notes jotted on a scrap of paper. Those notes rapidly morphed into an inky blur haphazardly sprawled across a notepad. And that inky blur quickly became a rough draft typed out on my computer screen. And there it sat, mostly ignored for several days. I occasionally added to the numerous bullet points of things I wanted to include and, in a very basic way that defied all the things my high school English teacher ever taught me and would surely horrify anyone with an understanding of grammar and the English language, typed out a rough draft. My original intent was to post this on January first, but that obviously did not happen. It has taken me a while to transform that rough draft to an organized and comprehend-able post that could convey everything I want to say. On top of that, I didn't want to come across as melodramatic or overly sentimental, so I took the time to choose my words carefully. As a result, this post is a week late. By this point, you are probably thinking "What on this overpopulated life supporting planet is she talking about? What is the actual point of this post...?" I promise that it will all make sense once I get started, so here we go.

I want to begin (ignore the tiny black squiggles above) by wishing everyone a Happy New Year, so...

Happy New Year! 

I hope that everyone was able to have a relaxing and joyful holiday season and wish that the New Year finds everyone in good spirits (despite the gloomy winter weather) and health!

It is at this time that people make resolutions and pinpoint the aspects of their lives that they would like to change over the coming twelve months. People see the New Year as a transition - closing the door to the previous year and opening the way for a new one. I have heard this transition referred to in countless ways: a chance to start over; a clean slate; a new chapter in life; 365 blank pages to be filled in and so on. Perhaps it has to do with the inner drive to be successful or happy; maybe there is something about the empty grey winter sky and the cleanliness of the snow blanketing the earth that inspires people to dig up the not so great things in their lives and improve them; or there is something about an annual event that marks the passing of time that causes people to re-evaluate their lives. Regardless of the why, the New Year signifies a fresh start and, as is reasonable with anything new in life, people want it to start off well. They want the New Year to be better than the last; they want the new year to represent a significant and positive change in their lives; they want to feel like they are progressing in life. So people make resolutions - they vow to eat better, promise to go to the gym four days a week or use that elliptical, now sitting forgotten in the corner covered in a fine layer of dust after last year's failed resolution. There are plans to stop procrastinating or de-clutter the house. Some resolutions are fun and lighthearted: traveling more, catching up with old friends, read those books you have been meaning to read but never got to. The point is, people see the New Year as a clean slate, something wholly different, and in some ways completely disconnected, from the previous year. It is not only a chance to review one's hopes and aspirations, but to actually start making them come true.

As I sit at my desk and spend a good chunk of my time on the internet (because that's what eventually happens once you have been stuck at home for four plus months with a missing section of your shin bone and an external fixator), I can't help but feel jealous as I scroll through articles and blog posts about the resolutions people have made. I have never been one for making resolutions. That is not to say that I didn't see things in myself that I thought needed to change, because I did and still do. But I worked on them as needed. At the start of university, for example, I was a horrible procrastinator. By the time I graduated, this was no longer an issue - I rarely had to rush to get course work handed in on time. Fast forward a year post-university graduation and into my college education, and I was getting assignments done weeks in advance. This example is not crucial to my point, but I hope it illustrates that I didn't wait for the New Year to make changes in my life. So New Year's resolutions are not my type of things. Yet I still feel jealous of all the people making them. A burning desire to be able to do something I can't while the city of people around me can. And that jealousy is routed in my chronic health problems.

From my perspective, people appear to move easily from the events of one year to the next. In general, the weight of the events of the previous year doesn't seem to follow people the way you might imagine it would, at least not around the New Year. People are optimistic and driven by that one common denominator - ambition. Everyone wants to have a better future and to do extraordinary things, and that requires ambition. Because people in general are healthy and have ambition, they feel empowered to set goals for the year to make changes in their lives. It is so easy to do when people are healthy and their lives are already going relatively well that resolutions become a frivolity. A person who doesn't face hurdles or setbacks does not have to think about whether or not they can achieve their resolutions (within reason, of course). Actually turning those resolutions into a reality is another thing, but most people have the ability to do so. But resolutions are a luxury that people living with chronic medical conditions often cannot achieve.

The longer an individual is chronically ill, the more the days start to blur together in some combination of medication, fatigue, pain, or never ending doctor's appointments. Daily life becomes a struggle; blood work is taken; scans are done followed by weeks anxiously awaiting results; sometimes there are positive results but just as often the news is undesirable; good days come and go, mixed sparingly among the many bad days; there are hopes and fears, doubts, anxiety, even joy. Treatment expectations can either be met or be disappointing, even heart wrenching. One learns to be reserved when it comes to hopes about the future - life becomes more about day to day existence than the future. And there is always that haze of medication, fatigue, pain, and doctor's appointments. It is hard to see life beyond that and think six months, a year, five years ahead.

The things mentioned in the previous paragraph are not minor or insignificant. On the contrary, they often play a drastic role in a person's life. Above all else, chronic illnesses are emotionally draining. They force a person to focus on the everyday instead of the future. The fear and worries about the future, however, remain. The start of a new year is not always the significant marker of time it is to healthy individuals, nor is it an opportunity to wipe the slate clean and start writing a new book. You simultaneously have both the need to live life day to day and all the concerns for the future tugging at you. The medical problems move forward with a person, often with no end in sight, and they will continue to affect everything a person does. As a result, there is little or no room for resolutions. When a person has already been forced to take life a day at a time (be it due to uncertainty with treatment, pain or fatigue, or the limitations imposed by their health), it is hard to look to the future. It can therefore be very difficult to create meaningful resolution. It might even seem pointless to do so. Without resolutions, goals, or a future to plan for, people need something else to strive for and to fill their lives with. This can be difficult as, over the years, life alters from what is considered normal.

It is at this point where this point seems melodramatic and perhaps a tad sentimental. You might be thinking "What a horrible outlook to have on life/the new year," or "Things can't be that bad!" Let me explain.

The last year has by far been the most difficult I have ever been through. This blog is a testament to that. From fearing the chronic osteomyelitis had returned at the start of January and anxiously awaiting scan results, to the relapse being confirmed by my orthopedic surgeon in February, progressively getting worse throughout the summer, followed by a PICC line and surgery, months spent at home followed by major surgery and an external fixator and intramedullary nail. There was so much pain and exhaustion, fear and unanswered questions. I remember sitting in the fracture clinic on a cold Friday afternoon in February, being told the bad news and how much I cried as I walked out of the hospital, alone and afraid. And through it all were the attempts to remember a normal to strive for and get back to... a normal I could no longer remember. Medically speaking, it was a horrible year and to an extent, the bone infection tainted everything else, like moving out and studying to become a nurse, that happened.

The unfortunate part of all this broken legged, bone infected, external fixatored nonsense is that it flows into the New Year. And I am not talking about a trickle or small puddle. I am talking full on flood. As much as my doctors are cautiously optimistic that the bone infection is gone, I am still dealing with the massive after effects that are left and those will take a long time to get better. Things will take a while to heal; there is more surgery to face, there are complication that could arise and pain to be managed. As a result, the after effects will shadow my life over the next twelve months and life, for the most part, will remain a day to day sort of thing.

I look at the empty gray skies and crisp white snow on the ground and I do not see the clean slate that I read about on other blogs. There is no ambition to meet a goal or make a life style change. Given the circumstance this would be difficult and perhaps foolhardy to do. I have to many worries to think about losing five pounds or getting back in shape, find a job or moving out. My slate had not been wiped clean and the snow outside does not look so crisp. Instead, someone had half-heartedly run a rag over the slate, smudging the chalk everywhere, and there are footprints tracking through the snow.

For me, the new year is filled fear and trepidation, a resolve to continue enjoying the little things in my life, and a quiet desperation for treatment to work, my bone to heal, and for the chronic osteomyelitis to not come back. This is all shadowed by the previous decade of the same medical problem constantly interfering with y life. If I were to make any resolutions they would undoubtedly be to be healthy again and to be able to look back at the end of the year and believe that I have gone through treatment and recovery gracefully and with bravery and courage. These are, however, unrealistic resolutions. As my doctors have told me and the literature I have found online and in my nursing textbooks explain, we are not talking about a cure. As one site put it: "The term cure is not used since the bone infection may relapse after many years of successful remission" (link found here). The ultimate goal is remission and no evidence of active disease. I can't help thinking about the relapse and how positive my doctors had been that the infection was gone for good. The relapse is a stark reminder that I cannot control what the infection does. It is not a failing on my part if it does rear it's ugly head again. Likewise, it is one thing to hope to be brave and courageous and graceful, but chronic health issues are anything but those things. There are both good and bad days, many rough and unpleasant moments, fear and worry, moments when I feel like I can conquer it all and get better but also moments when I feel desperate, discouraged and afraid. Saying I will be courageous and all that other stuff and making it into a big resolution to stick to does not do me any favors. Appearing to be brave is meaningless if I cannot cope by expressing myself. Therefore, it is unwise to make resolutions that are un-achievable, beyond my control or detrimental to my well-being.

So I won't be making any resolutions this year. There is nothing to aim for and, like most people forget within a month or two (we have all been there, myself included!). I don't have a blank slate - the events of last year have carried over to 2016. This is all too clear, literally and figuratively - the fixator on my leg is a stark reminder of everything. Yesterday I sat down and browsed through last year's posts, the words I wrote. I remembered the uncertainty and fear (relapse, possible treatment, horrible symptoms); how gutted I felt; despair, like I couldn't do it again. I read and I cried, tears rolling down my pale checks. In all my day dreams, I never would have thought 2015 would be as it was. And 2016 will be just as difficult, but in other ways.

As previously said, now is full of a lot of uncertainty, and the events of last year will continue to shadow me for months, possibly years to come. I will have my external fixator for at least four more months, then surgery with the possibility of either more internal hardware or a bone graft. After that comes intensive physiotherapy - by the time that begins I will not have been able to walk for at least eight months. There will be a lot of waiting for my shin bone to fully harden. If all goes well and as anticipated, this time next years. Yes that's right. January 2017 - fully hardened healthy new bone. And there is always the chance things could go wrong. My surgeon says there is a 70% chance that things go right. That leaves 30% that they go wrong. The next surgery could cause infection, the fixator could cause infection, the original infection could come back if it was not, as we hope, completely eradicated. The bone could fail to harden or not grow at all...

So many fears and so much uncertainty. After rereading everything I wrote here it makes sense that I do not want to make resolutions for the New Year. There is too much that my doctors and I cannot control.

But I cannot live a year in fear and uncertainty. That would make for a pretty miserable year. Nobody can be miserable for that long. Yes, maybe a day or two (well-earned given my circumstances), but not an entire year.

So I choose to look forward with hope. A hope that 2016 will be a year of healing, a return to wholeness. There is too much that is unknown to my doctors and I. It would be foolhardy to make a resolution to get better - something that I ultimately have no control over. And it would serve no purpose - if things go well, great! Fantastic! But if they don't, it is not for a lack of trying on my part. My leg will do what it will do. And it will be just as foolish to resolve to be brave and courageous throughout everything. Part of being ill/having medical problems is accepting that you don't have to be a super hero and push through everything.

So - hope. Hope and a smile and a day dream of being better. Sitting in the weak but strengthening spring sun; wading in a cool stream to stave off the summer heat; crunching over the brown curled leaves of fall; walking softly in the crisp winter's snow next year.

Last year I started the year out waiting for MRI scan results. It was a year that started badly, with uncertainty which turned into the ugly unwanted diagnosis of my relapse. The year ended in much the same way - fear, pain, uncertainty, etc. Those feelings have crossed over onto the blank pages of this year, but now there is also hope. And because of that, this year will not be like last, and I will not lose another whole year until my bone, fingers crossed, is fully healed a full year from now. Therefore - no resolutions this year. Just hope, a quite resolve (to see the beauty and joy in my situation and tiny world, even though it is not what I want for myself right now; it is about the simple things, the small stuff), and a daydream to keep me smiling and hoping whenever things get too tough. For me, that means a whole lot more than a resolution I know is not achievable or one that I will soon forget.