A friend?

"We'll be friends forever, won't we, Pooh?" asked Piglet.

"Even longer," Pooh answered.
Piglet sidled up to Pooh from behind.
"Pooh?" he wisphered.
"Yes, Piglet?"
"Nothing," said Piglet, taking Pooh's hand.
"I just wanted to be sure of you."

A.A. Milne

There was something that happened after surgery that is important for me to talk about. Although it happened to me and by all means is therefore a personal experience, it is something that I feel falls in line with a specific issue that I have heard many other people who live with chronic medical problems go through. I am not sure if issue is the right word to use to describe this matter but for lack of a better word it is what I will use. Please forgive me if you think it is wrong. I don't mean to offend anyone; merely to express my feelings about something that I find quite personal and hurtful; something that other people also go through; something that you likely won't understand until you yourself are faced with a major medical crisis or some other life altering situation.

The issue that I am going to talk about is friendship. Yes, friendship. Friendship should not be an issue. It should be something natural and fulfilling, the source of fond memories and many laughs, something that brings joy and, if need be, support, a shoulder to cry on, an ear to listen, a much needed hug. Depending on what the individuals in the friendship are going through, it might at times require effort and even commitment and dedication, but, in general, a friendship is easy. When things are difficult, it is natural to support a friend. When things are going well, it is easy to include a friend. But an issue? How can friendship be an issue? The word issue implies that there is a problem, a point of contention, a disagreement, something that is wrong. How can a friendship be wrong?

Let me back up a bit. While in school, I thought that I had made a number of good friends. Sitting in class with a group of people for days on end is a sure way to do that. Just ask any college or university student out there. But there is something special about nursing school - the heavy course load, surviving your first clinical placement together when you all feel equally inadequate and scared that you might do something horribly wrong, early morning trips on empty buses to the hospital while the rest of the city still sleeps, worrying about the next physiology test and that fear sparked by the approach of end of semester clinical examinations. Nursing school builds friendship, as I imagine any post-secondary program leading to a medical profession would. On the first day of the program, the course coordinator told us that the friends we make in nursing school will be friends for life. I believed her.

Given how close some of my classmates had become during the first half of the program, I was not prepared for what would happen once I took leave to deal with my medical problems. This is something that those of you who regularly follow my blog will know. When I took leave from school, my so called friends forgot that I existed. I haven't heard from some people since the final day of exams. Other people texted me for several weeks, the texts gradually slowing down and tapering off, eventually stopping entirely. One individual texted me on and off for some time. When she texted me several days after surgery in November, I hadn't heard from her in about at least a month. She never texted me back after I told her that I had already had surgery and was recovering in the hospital. There were others who I tried to stay in contact with; those individuals never got back to me. There were no phone calls or emails, no get well cards or hospital visits. It was as if I somehow ceased to exist. And it hurt. It hurt a lot. And you know what, it still hurts. I was completely unprepared to lose almost my entire circle of friends within the matter of a month or so. Who would be?

Why did this happen? That is a really good question. Perhaps they never liked to me to begin with and saw my leave as the perfect opportunity to lose contact with me. But why did they spend all that time with me if they didn’t like me? Maybe they didn't value the friendship as much as I did so it was easy for them to forget about me. It could be that they didn't know how to respond to the situation, how to address my medical issues, so they kept silent. Or maybe, the most likely explanation in my opinion, they were only my friends when it was convenient for them, when I was already there in class with them and putting forth my part of the friendship.

In contrast, I spent a long time wondering if it was my fault that my friends lost contact with me. What if I had tried harder? Sent more e-mails? Texted more often? I thought that maybe it was my fault that the friendship failed. But that didn't make sense either. I tried really hard to be a good friend. I helped people with school work, gave study and exam advice, hung out with people between classes; many laughs and jokes shared, reassurances given when necessary, texting, talking, coffee... What did I do that could cause my friends to forget about me? I did my best to be a good friend. So, the question is why? It was a question I asked a lot. 

Regardless of why my friends dropped me like a stone, it happened and it is something that happens to many people who are confronted with a health crisis. There is a statement that I have heard time and time again - I learned who my true friends were when I became ill. Just like other bloggers who have experienced this phenomenon, so have I. By the time I had surgery two weeks ago, I was almost over losing my friends. Not quite, but almost. The long months stuck at home, in my bed or on the couch, still bother me. I still find it unfair when I see or hear about other young people doing fun things, going to school, finding work, or any of the other things young adults do. I still feel lonely and isolated. But I am finding more and more joy from the friendship I still have (two very good friends) and thinking less and less about the supposed friends who forgot about me when I got sick.

And then that heterotopic ossification thing happened and I needed surgery so I found myself in the hospital early one Friday afternoon. I really needed something to eat after surgery, so once I had left same-day surgery and before I headed to the parking garage, mum wheeled me to the cafe on the hospital's main floor. I had been so worried all those months about bumping into a classmate while I was in the hospital. I was adamant that I would ask for a new nurse if one of my classmates happened to be doing their clinical placement when I was in the hospital and were assigned to take care of me. I even told my surgeon that I didn't want nursing students in the OR when I had surgery because I knew at least one classmate who's clinical instructor told her she would get her students into the operating room. I worried about it two weeks ago, the night before surgery, because I had seen student nurses working the pre-op area before. But I wasn't expecting to see anyone after surgery.

My mum was a step or two away from where I was, sitting in my wheelchair. I was groggy and trying to think about what to eat, looking around at the various people in the cafe when I saw a familiar friend. I will call her E. I didn't want her to notice me, to talk to me, so I asked my mum if we could go down to the cafeteria instead. Despite my wish to remain unnoticed, E. noticed me when mum and I were half way out the cafe. So there I was, pale, tired, groggy, black half-moons under my eyes, leg stretched out in front on me with the fixator perched on top of it. E. walked toward me, looked me up all down and asked "What are you doing here?" Not how are you or long time no see. There was no pleasantry. No questions about that external fixator so prominent on my leg. Just "What are you doing here?" And there I was, tired and groggy. I didn't know how to respond, what to say. I didn't want to justify being in a place I had every right to be or to explain why I was there. I didn't want to have to tell her about everything I had been through over the months - the PICC line, all the surgeries, the pain and worry and fatigue, the external fixator, all the appointments, all the x-rays we waited to see as the anticipation built inside us. I didn’t want to explain all these things to someone who clearly had no interest all those long months. No. I didn't want to tell her any of that. I wanted here to know how hurt I was that our friendship meant so little to her; how incredibly painful it is to lose all of your friends when you are already confronted with a tremendously difficult and lengthy situation. I wanted her to know how badly I felt. And I couldn't find the words to say, they got stuck. All I could say was "It's surgery day". And she said "Oh". To which I replied "Yeah. I have to go".  E. took a second to respond and then slowly said "Oh, you have to go?" Yes... so mum wheeled me away, and that was that.

But it wasn't. I'm still thinking about it, trying to understand it. Maybe she was just as surprised to see me as I was to see her. But even then, why wouldn't see ask how I was doing or say something nice like everyone missed me? Did she go home afterwards  and think about the brief interaction just like I did? She didn't call or text in the following days, apologizing for not keeping in contact (goodness knows that I tried) or wondering how I was doing. All those months while I sat at home she probably didn't think about me at all. Our friendship didn't mean to her what it meant to me. I would never treat a friend that way. If one of my friends was ill, I would be there to offer support and company, a hug, a distraction, a good laugh. I would never forget about someone because they got ill or because it was inconvenient to send them a text message or short e-mail. 

And that's when it hit me, like so many other before me: You learned who your true friends were when you became ill. The only explanation that comes close enough to explain why my supposed friends forgot about me was that they weren't really friends at all. I value my friendships so much and they are worth putting effort and dedication into, even when things get tough. But not everyone thinks that way. E. will probably forget about me. She won't wonder how I am doing or if I got rid of my bone infection. Neither will she wonder about the fixator on my leg or ever call or text me again. I wasn't important to her and when things got rough and required effort on her part she backed out of the friendship. All of my friends from school did. That hurts, it stings. It is cruel. The loneliness and isolation are already cruel, but the realization that your friends didn't care enough to keep in touch is worse. And that is why friendship is an issue. It is a massive problem for that individual who does get left behind.

The word issue might offend some people. They might say that my so called friends had every right to stop being friends with me. Yes, they are free to do as they please. A friendship is not a lifelong obligation, nor is it a given right that one can demand. But isn't it odd that all those people who I considered friends, every last one of them, forgot about me at the same time? That they all dropped the friendship even when I continued to contact them? I tried to be the best friend I could be while I was in school. When I got sick, the friendship ended. Sometime I think that the friendships would have continued if I tried harder. Maybe if only I sent one more text. But I was the one who got sick, whose life screeched to a halt, who required multiple surgeries and crutches and PICC lines and an external fixator. I already had the burden of being tired and sick and worried. Why then should it also have been my responsibility to try to keep in contact with all those people when they clearly had no interest in putting effort into the friendship. And that's what gets me that most. If I would confront them about it, they would likely say that I could have kept texting them. But that's not fair to me. It is not a valid excuse towards anyone who is sick or going through a really difficult situation. I shouldn’t be sick and tired and worried and trying to keep I contact with everyone if not one of them puts any effort in being a friend to me. That realization is liberating; it makes is possible to stop blaming yourself or wondering why and realize that it wasn't your fault that people forgot about you. That helps things a little bit. It was not my fault.

And that's it. It’s actually quite simple when you get down to it. You really do realize who your friends are and you do figure out that it is not your fault if others are unwilling to put in their part of the friendship. I wanted to share that with everyone because even though this was a personal experience, it matches what so many other people go through. I want people who are ill to know that they are not obligated to keep up their end of the friendship if all their friends no longer get in touch with them when they become ill. The person who is ill is also not obligated to question why those friends don't call anymore. If the friendship and the effort I put in meant so little to them, I shouldn't waste more of my time (already so precious when you are tired or sick and face medical hurdles) questioning why they don't call any more.

Lastly, to everyone out there, I want you to consider your friendships and how much they mean to you. What is friendship worth? What value do you attach to it? Are you willing to do for your friends what they do for you? Are your friendships worth that little extra bit of effort that could brighten the other person’s life? We might be individuals, but when we are in any type of relationship our actions have an effect on others. With that line of thought, it makes sense that the other people involved in those relationships are also affected when we walk away them. Losing my friends during the most difficult part of my life has had a profound effect on me - I now know the effects of isolation and loneliness, how difficult life is without friends and the support they offer. The only positive to come out of this situation is the affect it has had on how I view friendship. It is valuable and cannot be taken lightly or for granted. I will never treat somebody the way my friends treated me. Getting through something difficult with a friend makes the friendship stronger, more valuable, and more meaningful. For now though, that knowledge offers little comfort. I am still sitting on my couch alone.

A quick post about surgery

My post-op appointment, as planned, was on Tuesday morning.  I have already written a post about it, which I will put up this evening (or tomorrow, because there are a few things I want to blog about before it goes up), but first I want to recap about surgery itself (that way everything makes sense and me personal record of things is complete). So here we go.

Like many of my previous surgeries, this one was planned for eight in the morning, which means getting up at four... a wholly unnatural hour to stumble out of bed at. By this point I have the whole morning routine down perfectly. Not having to take time to make breakfast helps of course. I just pull on some clean clothes, take fifteen minutes to hop around my room on one foot to I make my bed, thank my lucky stars that I don't stumble as I make my way down the stairs, and out the front door I go! The only real bright side of having surgery so early in the day was that we had first pick of the best parking spots.

Mum and I headed straight to same day surgery this time, instead of admitting, since I wouldn't be admitted overnight. There is little good to be said about the same day surgery nurses. While one of them was as sweet and kind as possible, all the rest where absolutely horrible. I don't know if I said something wrong, if they didn't like that I corrected the nurse when she was looking for my file (I told her my name and spelled it out for her, she then searched for my file for a bit only to say a completely different name later. I restated my name and then she got all huffy), or if they just have something against young female patients who are upbeat and friendly at such an early hour in the day, but it was not pleasant.

Here I am, about an hour and a half before surgery. I've gotten a much needed hair cut since... started having a mullet like thing going on in the back.

About a half-hour before surgery I was wheeled up to the holding area near the operating rooms. I wanted to get there on my own two feet, so to speak of course, since I can't exactly walk at the moment, but the porter said she wouldn't dream of it (see took one look at the fixator and insisted I stay on the stretcher). Let me tell you, the difference between the day surgery nurses and the OR staff is day and night! I had to talk with the OR nurses, anesthesiologist, etc., before going to the operating room. Surgery will likely be the only time in my life that I am the most popular girl in the room XP In true hospital fashion the OR lost my consent form... again. They seem to do this almost every time that I have surgery. My surgeon also stopped by to go through everything once more and answer any questions I might have. Oh, he also left his signature on my leg - hospital policy so they won't operate on the wrong body part. As if anyone could miss the external fixator! He then left to get scrubbed in (first patient of the day) and shortly after I got wheeled in to the OR.

Low and behold, the same operating room as the previous three surgeries. I was kind of hoping for a different one. But maybe I am not missing out; maybe they all look exactly the same. What I do know is that I don't want more surgery for the chance to find out!

I won't get into details about the operating room itself, because it is old hat by now. My surgeon winked at me reassuringly a few times, I breathed in some air, and before you know it I being wheeled into the PACU. This was just after nine. I stayed there for a bit, and around twelve or twelve-thirty I was sent back to same day surgery. The nurse who was assigned to me when I returned started trying to get me to leave the minute I got back. Patients usually stay down there for a few hours after surgery in order to make sure they are alright to go home, but she said I could go home right after I got down. She really seemed to dislike me. Note that this was a different nurse than the one I had seen before surgery, not the one who go my name wrong.

I was still pretty groggy, so I took my time. After a while I got up to go to the bathroom. In the matter of minutes it took to get back, the dressing on my leg had turned bright red. Mum called the nurse over immediately and asked her to call my doctor. She refused, stating that she would reinforce the dressing and that I could still go home. Still being groggy, I wasn't putting up much a fight, but my mum was! I am really fortunate to have her! Meanwhile, the red patch on the dressing continued to spread. So the nurse agreed to get my surgeon but said that he would do exactly what she would and still send us home. It was almost a kind of shallow threat, like are you really making me call the surgeon for this? It felt like she was trying to get us to back off and when we didn't, as if we should feel bad for getting the surgeon involved.

Here is the dressing on my leg. Bleeding.

 Bleeding some more...

Atfer a while, my sugreon still hadn't arrived, so the nurse went back to the fracture clinic to find him and get him to come over. And he did! *sigh of relief* He took one look at my leg and said "Oh, I wasn't expecting that to happen". It took him a couple minutes to figure out what to do. The idea of re-dressing my leg was briefly considered, but quickly shot down - not such a great idea to take the dressing off a fresh incision in an unsterile environment... couldn't go back to the OR just for that either. Then we thought about having the home nurses come over once a day or on an as needed basis to re-dress the whole thing, but that would pose the same problem and mean that someone un-knowledgeable about fixators would be making the decisions. My surgeon explained that the infection risk is the greatest during the immediate post-op period. Solution? Reinforce the dressing and come back to the hospital in case anything happened. He would be working the next five days straight, so we could go to the ER and tell them "direct ortho", which would somewhat by-pass the ER system and get us seen by him, or at least somebody from the ortho department rather than waiting hours to be seen by the ER itself. So that's what we did. It was actually really good that we got to see my surgeon after surgery. Not only were we able to sort out the issues with my dressing, but it gave my mum and I an opportunity to ask a lot of questions we hadn't even thought of until after surgery was done, like when I would start doing the turns again. These were important questions the same-day nurses wouldn't have been able to answer.

Reinforced dressing and my oompa loompa toes (from the stuff used to clean my leg in surgery).

My surgeon and have I a really great doctor-patient relationship. I have been seeing him for a little over four years now and, including this one, he has performed four of my six surgeries. He has seen me through a lot medically, from surgery in 2012, being given the all clear a year later, having to inform me that the bone infection had returned, installing the external fixator on my leg, and so forth. He is also one of the only surgeon's in the province to work with external fixators. As such, a lot of his patients who do have fixators seem to be younger, people more around my age. I think he does see how difficult this all is, especially at such a young age, and understands how much of an impact this has on a person's life. I should be embracing adult life right now, but instead I am sitting at home on the sofa. Not exactly what I wanted from life at this point.  Sometimes it feels like I went straight from childhood to being a little old woman. In this time, my surgeon has been so kind, professional and encouraging. Simply out, we have a good thing going!

Now back to the same day surgery nurses. Except for the one mentioned earlier, they were pretty unpleasant. The nurse assigned to me once I returned after surgery was not nice and she was very reluctant to call my surgeon, saying he would tell me exactly what she would. This turned out not to be true - it took some time to figure out what to do, followed by a bunch of questions from me and  instructions on what to do in case things went wrong from him. So it was good that my surgeon was called. As soon as the nurse saw how the surgeon and my mum interacted, her entire attitude changed. Instead of pushing me out the door as fast as possible, I was all of a sudden allowed to stay as long as I needed to. Meanwhile, the young man recovering next to me was given the time he needed from the moment he was wheeled back downstairs. He wasn't pushed out at all. It was quite odd to see how quickly her attitude changed and, now that I have had time to reflect on it, it makes me quite sad and a bit confused (at first I was just upset). Why should I be treated any differently? Is it because I am a woman? Perhaps because I am young and some older nurses who are unhappy with their own lives resent that? I have heard from others that some nurses do dislike young female patients... Could it be because I am willing to advocate for myself and they don't like that because it challenges their authority? Could it be possible that the nurse was just having a really bad day and took it out on me? Or she hates her job? Or she was trying to make a point to management or use patient satisfaction to put pressure on the system or responding to budget/staff cuts or other hospital decisions that she had no control over or would feel a negative effect from? Maybe it was as simple as hearing me restate my name when one of the other nurses called me by another name while looking for my file. Who knows. It could be any one, or even multiple, of these things. What I do know is that it shouldn't take seeing my surgeon and I interact to get a nurse to treat me kindly and respectfully. Having dealt with the health care system for over a decade as I sort out this broken leg/bone infection problem and now entering the nursing profession myself, I know that patients are often some combination of sick, in pain, tired, stressed out and scared, not to mention that many don't feel like they can advocate with themselves without backlash that negatively affects their treatment, or they don't know that they can advocate for themselves at all. Patients deserve better. They deserve empathy, reassurance, and professionalism... not to be sent packing or discharged of care as soon as they get back from the recovery unit after surgery for some trivial reason like repeating their name, looking like they can advocate for themselves, or something on the part of the nurse.

That being said, one of the other nurses I had was incredibly kind and caring. She remembered me from the surgery I had in August, which led to a nice discussion and lots of laughs. This whole experience is definitely teaching me which type of nurse I do (and don't!) want to be. So to look on the bright side, as I always do, this experience will shape the nurse I want to be and help me provide the care that I know (from personal experience) that all patients deserve. Anything else is a disservice.

Anyways, enough about that. It was just something that stuck with me. After all this, I sat a little bit longer, still really groggy and sleepy, sipping on some ginger ale. Then mum and I got a bit to eat in the cafeteria downstairs (sweet potato fries and a classic grilled cheese sandwich) because I hadn't eaten since the night prior before we drove home and I promptly feel asleep for almost twenty-four hours. I am still on all the long term pain medication I was on prior to surgery, but I stopped taking break-through meds within two days. This id good! I am stoned enough as is on the long-acting pain meds.

In the end, it was really nice to be back in my bed at the end of the whole thing. It was a bit scary because I have never had same-day surgery before and because my incision bleed through the dressing when I stood up for the first time; given how groggy and tired I was when I got home, I was a bit concerned about that too. But everything turned out okay and it was a big relief not to have to interact with anymore unfriendly nurses. The only concern on my mine was sleep!

Back to my usual view from mybed. My leg still the royal monarch of body parts, stacked magjestically on a ile of pillows.

 Sleep! And oompa loompa toes - they got a good scrub the next day when I was a bit more awake.

Post-op tomorrow

My post-op appointment is tomorrow morning. Hopefully everything is healing well and my pin sites have survived the last twelve days without pin site care. I am actually a bit apprehensive about this. One of the pins has been leaking and leaking and leaking, draining for what feels like forever. The fluid coming from the pin site seeped through a swath of dressing around the pin, which in turn has stained the bandage around it an icky yellowy brown which had hardened. I know that I am a nursing student and will deal with stuff like this my entire career long, but the thought of those stained, damp, icky bandages on my skin for days on end makes me uneasy. It makes my stomach churns; there goes my gag reflex! I can only imagine how wet and mushy the skin underneath has become. But I was reassured multiple times (I kept asking, better safe than sorry) that it was safe to leave the dressing on until post-op and forgo pin site care. *sigh* Like always, I just have to have faith in my doctors. Not that that's done as easily as said.

On a much brighter note, my staples should be coming out! I asked my surgeon how many there were after surgery. He wasn't sure but he thought about fifteen. Even plus or minus a few, that's much better than the fifty-seven from the previous surgery! And this was surgery number six. I could probably remove them myself at this point. I could too! I have removed staples during clinical before... just not my own!

Things went well!

A little under a week ago, I had surgery to remove a heterotopic ossification from my lower right leg. What exactly is a heterotopic ossification? Good question! Those who follow this blog regularly have likely seen my post on this topic and know that it is not good. In fact, it is a complication. A rather unanticipated one to boot. For those who haven't read the last few posts, it is basically bone that is growing within soft tissue. More simple put, it is bone growing where it ought not to grow. Of course, this truly is the most simple explanation possible. A heterotopic ossification isn't really bone at all, at least not true bone, and there are a whole bunch of different causes and factors influencing whether or not it will happen (or come back for that matter). But this explanation will suffice for this blog. For those who wish to read more about it, here is the link to the Wikipedia page about it. To seem a bit more credible - I am a nursing student after all - here is the link to the information provided about it on Medscape.

But back to my heterotopic ossification and the surgery required to deal with it. I was pretty nervous about the whole thing. Given everything that I have been through, I would be lying if I said I went unfazed by the whole thing or shrugged it off as just one more surgery to add to the list. In fact, I was more than a little bit fazed - I was scared and had a swarm of butterflies flying in my stomach up until the moment they put me to sleep in the operating room. In the week between getting the news that I would need surgery and having the surgery itself, I asked a million different questions: What if we have to start the bone transport over? What if surgery or the heteroptic thing istelf causes permanent nerve damage? What if it comes back? What if surgery causes a new infection? You get the idea. Ever since the relapse, every little twinge or ache has me worried the bone infection could come back or that the bone transport could go wrong. This makes sense when you think about how much I have actually been through. There is only so much you can take while still hoping for the best before you start scrutinizing every little thing. It will take quite some time before aches and pains in my leg do not scare me and getting x-rays won't set the hairs on my arms upright in nervous anticipation.

Therefore, it gives me great pleasure to tell you that the surgery went well and that my surgeon was able to successfully remove the heterotopic ossification without damaging the nerves in my leg! Furthermore, the bone transport is able to continue as we hoped it would. Hurray!

At the end of the day, that is reason to celebrate. I might still have my external fixator, which is both painful and cumbersome, and I might not be able to walk just yet (a minimum of another six weeks to go), but I am back on track and that can only be a good thing.

Ready for number six!

Here we are, still smiling! Nervous but always smiling =)
I even made the bed after I took this picture.
Here's to hoping that everything goes well.
I have every faith in my doctor and trust that he will, as always, get the job done and in my best interest too.
Hope everyone has a lovely weekend!

Pre-surgery thoughts and fears

Surgery this morning. I am tired, nervous and hungry - a bad mix of things to feel before any big day, not to mention one where someone cuts you open and tinkers with your insides.

If I wasn't always so damn cheerful, I would be pretty cranky right now. Instead I am filled with jittery energy. Everything can be turned into a bad joke, anything is reason to be morbid and twisted. I think that it is a coping mechanism. I can't sleep. I can never sleep before surgery. As always, there are thoughts of just not going. With the last surgery, the big joke was that mum and I would just keep driving. Just stay on the highway until we hit Barrie. Then what, who knows... We joked about it for weeks. We didn't do it, of course, but the running joke did make us laugh and that definitely eased some anxieties. But there is no joke about skipping surgery this time, just the knowledge that when I wake up the fixator will still be attached to my leg.

I was so sure that the next surgery I had would be to remove that shiny blue frame. So long monotube triax! The thought of anything different is almost incomprehensible, unbearable. I am ready for my leg to be mine again, not heal together with pins, clamps and rods. in a striking contrast, I don't think I can imagine my leg with out the fixator anymore. Those half pins have become part of who I am. I Aside from this, it just seems wrong that it will still be there, through my tissue and into my bone, when I wake up from surgery. But the ex fix will stay on for at least six more weeks. Some people recover from a broken ankle in that amount of time. I wish I had healed that quickly, all those years ago.

I am tired and I don't want to do this anymore. I am so worn out. I am too young for this. This experience ages some one so so much. I am doing things my peers don't even know exist all in the name of my health. Ironically,  surgery makes me feel like a child - a scared little child, powerless. I have to do something I don't want to because it is good for me, because someone else says so. That makes this sound like a child having to eat their vegetables. I wish things were that easy. But surgery doesn't just leave a bad taste in your mouth; it causes pain. Loads of pain; pain I cannot adequately describe. The reward is so much better than getting dessert; it is a lifetime of being able to walk. I need to be able to do that one simple thing. This whole thing has been so incredibly traumatic. Even if it has become normal, that doesn't change. Nothing will undue how this has affected my life, changed me, denied me a normal young adulthood, but being able to walk again will be a pretty good consolation prize.

And there are the thoughts - What if this doesn't work? What if the infection returns? What if the new bone doesn't heal properly? What if this heterotopic ossification wrong odd kind of bone comes back? On a side note, it's getting less fun to say that. The seriousness of it and the surgery looming ahead have sunken in. What if I don't get the feeling in my foot back? What if I get a new infection? So many questions, so many fears.

But I am a big girl. No, I am a gown woman. I might not fully realize it yet because so much of the last decade has been filled with medical things rather than focusing on the things young people do as they move from childhood to adulthood, but it is true. I am smart; I can take care of myself: have lived alone: I have a university degree; I am mature and perfectly capable just like my peers. I am a grown woman and I will do what I have to, even though it is unpleasant, because I know it is good for me. I don't need someone to tell me that anymore, not like a child would. As surely as the sun will rise, I will walk (erm... hop with my trusty crutches) into that OR this morning. I might not like it, but it will be okay. I has to be. Even if it isn't, we will make it okay somehow.

But then, I am still afraid.

Rain, paino, prunes and stuff. An odd combination.

It is gray and drizzly outside - my kind of day. Yesterday it was nineteen degrees out. I didn't need a winter coat and it was lovely to feel a warm breeze on my toes. This is one of the perks of external fixators - everyone else is still in their winter boots, but my toes were free! I love these early spring days, the smell of damp earth, especially when it is overcast and rainy. I long to walk on the wet pavement, raincoat on and umbrella in hand. One day, one day it will happen.

I sat down at my piano for twenty minutes or so this afternoon, something which I haven't done in months. I miss playing - it feels like music coming from my fingertips. And there is something about those cool ivory keys under my fingers. I can touch them so gently, yet they still make a sound. Sitting at my piano felt natural. I had forgotten that feeling; it was like returning to an old but trusted friend. I should make an effort to play more when my leg doesn't hurt anymore. The only weird or awkward part of the experience was using the pedal. Pressing my foot down on the pedal brought on a pretty odd sensation because I still can't really feel my big toe. The numbness is still lingering in my heel as well. Hopefully my surgeon thinks it is safe enough to remove the splinter of bone sticking into the back on my leg. We suspect that it is pressing on a big nerve and that is what is causing the numbness.

My home nurse came this afternoon. I always have a good chat and laugh with her. She is a bit younger than some of the other nurses I have had, which I think helps. I can imagine that they don't see many young people as patients though. She is surprised that my surgery is booked as a same day procedure. We will see what happens tomorrow. I have always woken up pretty badly from surgery, so I will pack an overnight bag just in case. We did have a really hard laugh about something. I have been having some problems because of all the pain medication I am on. Because I have to keep taking them (can't obviously stop when you have metal drilled down into your bone!), nothing I try to resolve this is a permanents fix - only temporary. My home nurse suggested prunes. Mum and I bought some at the super market the other day, but they were the kind you have to soak in water to eat first. They were disgusting and stringy and looked like my foot after it came out of my last cast in October with different layers of stuff flaking off. Anyways, my home nurse asked about this particular problem so I told her everything that I was taking for it but that it was still an ongoing problem. And then I proudly exclaimed "I did try the prunes! But they were horrible, and they did nothing. Nothing at all!" And then we both burst out laughing. XD Apparently she meant the soft sweet ones you can eat without soaking first. I will have to track some down after surgery.

As you know if you follow this blog, I am having surgery tomorrow morning. I never thought that I would have surgery and wake up with a fixator still attached to my leg. I think of everything that has happened over the last week (x-rays, bad news, pain/pressure in leg), and this is the worst part. I can't seem to wrap my head around it. I know that the fixator will still be on when I wake up after surgery, but this little part of me, the part that is wishful and hopeful, says it won't. Perhaps that is just my body's way of saying enough is enough; I want to get on with my life. But it is what it is. Nothing I do or hope for will change that. For now, the most important thing is getting the feeling back in my toe and heel and saving the bone transport. The last thing we would want is to have to start all over.

Time to try on my new earrings, I think. I need a good distraction. Maybe sit at the window and watch the rain some more (fantasize about jumping in a puddle!) or play piano. 

ER visit after pre-op appointment

ER Visit
After my pre-op appointment, mum and I drove from the children's hospital to the General, which is where I see my surgeon at the fracture clinic and I will be having surgery this Friday. I had been having some problems with my leg for a week or so. About a week and a half ago I started having a lot more pain in my leg. This turned out to be because to the heterotopic ossification thing (still fun to say, by the way). For those who don't know yet, something went a bit wrong with the external fixator/bone re-growing thing. Bone started growing from the opposite end, hit the portion of bone being transported downwards, and is now sticking out, and probably growing, into the back of my leg. Fun times! Not. My physiotherapist was pretty concerned about swelling in my leg (oddly, it didn't extend to my ankle) last week Thursday. On Friday, my surgeon said it would work itself out over time. A quick search online, however, suggested that local swelling is common with heterotopic ossifications aka. when your body decided to heal itself wrong. No amount of elevating my leg would shift the swelling but I hoped it would go away after surgery. After all, without that nasty bit of odd wrong unwanted bone, the inflammation would go down, right? Unfortunately, over the last day or so my leg has felt pretty terrible. My leg is still quite swollen and it had been extremely achy. I have never felt anything quite like it and it didn't seem to be going away, so mum and I decided to head to the ER after pre-op was done. After all, I probably toughed things out a bit too much with pain and my pin sites tracking (will post about that another time) so it would probably be better to get things checked out sooner than later, especially with surgery fast approaching. Plus, the doctors back home won't touch fixators, so it was best get my leg looked at before we headed back home rather to get home only to realize that we really did need to go to the hospital and have to make the drive up again. On top of the horribly uncomfortable feeling of swelling, my leg ached as if all the blood was rushing back into it every time I lowered it to the ground and the skin by the bottom two pins was slightly red.

When I got my fixator, my surgeon told me that I could come in at any time - even without an appointment - if I had concerns about/problems with my fixator. He said that he or one of his residents is always at the hospital. Today did seem to be an exception though. Mum and I didn't know if we should go to emerge or the fracture clinic. We choose the former, who told us to stick with them. I explained my situation and waited for several hours to get called into the "green zone" (I am not making that up, that is actually what it is called), where patients are seen, examined, treated and hopefully sent on their way (treat and street - again, not making this up!). We sat next to a friendly woman who had British accent and was with her young son. She arrived before me but I was called back first. So the triage system does actually work! People are really prioritized given why they are there. I though it was an urban legend, like Sasquatch!

While I waited in a private treatment room I ate my yogurt fruit cup, with granola (another hospital food I actually enjoy).

The doctor who I saw didn't seem to really listen to what I was saying. He wasn't too concerned about the redness on my leg and said it probably wasn't infected. We had already figured as much - a bit red and swollen but no intense pain, heat over the red patch or fever. Our main concern was that perhaps something has happened with the unwanted bone set to be removed and that it might have been pressing on something, thus causing circulation issues. But given the nature of fixators, I wouldn't have ruled out infection either just because holy crap, these pins pierce my skin all the way down to and into the bone! Fortunately, and this is very fortunate indeed, I was sent for an x-ray.

The x-ray technician who I had seen the previous Friday, a really sweet young woman, was the one who showed up to take me for my x-ray. I think she was a bit surprised to see me because I had been into the fracture clinic less than a week prior. She asked what happened, I explained; she walked along the maze like corridor to the x-ray room, I hoped along. I briefly summed up the heterotopic ossification, the upcoming surgery and what was going on with my leg. I also said that I didn't think the ER doctor really listened to what I said and I was worried my surgeon wouldn't actually be contacted. She completely understood and said she would do what she could. The long and short of it - after my x-rays where taken, she talked with someone else from the fracture clinic who then talked with another guy from the clinic. Mum and I had talked with him for a bit during Friday's appointment (he was the one who said that fixators are the stuff you read about in textbooks, not see in person). He came over to look at my leg, agreed it was swollen and a bit red, and agreed to contact my surgeon's assistant straight away (my surgeon was performing surgery at a different hospital today). This was a relief. The ER doctor said he would contact the ortho people at the hospital, but not that he would contact my ortho person. The only ortho person to do this kind of ex fix thing at the hospital. The one who is in expert in this stuff and knows my entire medical history. My ortho person, who would be performing surgery on me in less than two days!

The x-ray technician led my back through the maze to the examination room and wished me luck with the surgery on Friday. Shortly later, the nice guy from the fracture clinic showed up. He explained that he had contacted my surgeon's assistant and she said she "would run with it straight away", meaning she would tell my surgeon what was happening asap. He said this was much better than getting the ortho people currently at the hospital involved - and when he said people, he meant the only otho doctor there, a guy who wouldn't know my case from a hole in the ground. I am extremely thankful that he contacted my surgeon. He seemed almost apologetic that he couldn't do more, but my case wasn't easy, open and close so it might be hard to figure out what's going on. Shortly after, the ER doctor returned. He had gotten in touch with my surgeon or rather, we think my surgeon called the ER doctor based on what the ortho tech had said. This is what it came down to: the ER doc didn't think the leg was infected, which is good. But my surgeon wanted to get me on a second antibiotic just in case anything was brewing; given my history of infection and the upcoming surgery, this made perfect sense. He also wanted to get me on an NSAID to see if that would help reduce the swelling and the throbbing full of pressure feeling in my leg. As a result, I am on Cephalexin and Naproxen for the next week. The ER doc also relayed what my surgeon said about the upcoming surgery. My surgeon will look at my leg on Friday morning. If the blood work taken at the ER is good, the redness goes away and swelling subsides a bit, we will go ahead with the surgery as planned. If the redness and/or swelling don' go away, he might look around another section of my leg to make sure that there is no infection quietly brewing away. I don't know if these two are mutually exclusive or if both could be done at the same time. It is a wait and see until the morning off. That is all I know. But at least now my ortho guy knows what is happening. And he knows that I tough things out, so if I am feeling unwell enough to go to the ER, then I am feeling pretty unwell. Interestingly enough, the ER doctor was much more attentive and friendly once my surgeon was involved. Who knows how many patients try to get their way by saying "my doctor this or that, blah blah blah". Except in my situation, it was actually true. The initial blood work from the ER was good and I was sent home with a script for the medications mentioned. So far, my leg is feeling a bit better.

By then it was rush hour and we were pretty hungry, so mum and I stopped at IKEA to have dinner. We also bought pretty things. All the pretty things! They were setting up the summer selection today, so we got almost first dibs on the items XD And then the As Is section, which was a hit too! And that's it, time for bed.Surgery is literally tomorrow. *gulp*

Pre-op apointment

Pre-op Appointment
I had my pre-op appointment this morning as planned. The day started well - lots of jokes and laughter as my mum and I drove up to Hamilton. Mum hasn't been to a pre-op appointment with me since 2012. As a result, she didn't quite remember the process and how much of a hassle it could be. The pre-op clinic was approached with several groans and the inevitable realizations that we could be there for a while. I was somewhat amused, having done it several times on my own. It was all good, though - we both brought a book to read.

We arrived about quarter to ten and where done and out the door by twelve thirty. Not bad, as I have had pre-op take up to four hours in the past. Mum bought herself and I some cake from the cafe on the main floor (I have a thing for hospital cake... weird, I know), so we enjoyed that after I filled out my the necessary forms. Mum and I giggled a lot at the forms, like the section that asks if you can walk up two flights of stairs without having to pause. This question has to do with your heart/lungs, but the irony was not lost on me. There is no way that I can get up even one flight of stairs without stopping, let alone one!

The nurse who took my vitals and blood sample was really sweet. We had a good chat and discussed nursing opportunities once I graduate (fingers crossed for April 2017!) and write my certification exam. She says that 98% of nurses get hired right away. I'm hoping that's true. Even if it is just part-time work, it's better than being a cashier or an unemployed history major all my life. I really feel that nursing is the right profession for me. I'm not sure I would necessarily call it a calling, but it feels right, like something I am meant to do. And all the medical stuff I am personally going through will really help with empathy and understanding what patients going through, something that does seem rather lacking in the system at the moment.

But back to pre-op. The nurse I chatted with was lovely. She asked me the same old questions as always and briefly went over my med list. She had to take blood. I am a hard stick after so much blood work over the years, so I am never fond of this part. Not only do my veins seem to collapse, often before they are poked but sometimes mid-way through giving a sample, there is also loads of scar tissue around my inner elbows where they generally like to get blood from. Last year I even had it taken from my inner forearm - that was not fun! Fortunately the nurse got a vein on the first try, although it hurt like crazy which it usually doesn't.

After that, I went back to a waiting room for a bit before being seen by one of the anesthesiologists. He listened to my lungs and made me turn my head every which way to make sure I was okay to get a breathing tube. I was a bit anxious about getting general anesthesia again because of what happened in the recovery last time - uncontrollable shivering which continued to happen throughout the week long hospital stay that followed. I was never told what caused this although the anesthesiologist I had then did make a mistake with ordering too little pain medication. He even apologized for it the next day. The anesthesiologist I spoke with today says it was likely shock caused by pain. This makes sense given the type of procedure I had done and the mistakes in pain medication that were made. It is reassuring to know that it should not happen again.

After that, I was done. The anesthesiologist wished me well and I said a cheerful goodbye to the staff at the main desk in the pre-op clinic. All in all it went well and took less than three hours, so I was pleased. There are, however, some things I want to mention about today's appointment. All positive about the staff of course, but still some heavy-ish topics:

1) The nurses at the main pre-op desk remember me. This makes me rather sad. Today was the fourth time I have had a pre-op appointment there, the third time in just over six months. I don't think they see a lot of people my age, so it does make sense. And on top of that, I am always cheerful and smiling, and I think people remember smiling faces better - they stand out, so many people frown all of the time. To add to that even more, my medical history is quite long (especially considering that it about a single problem - one broken leg and bone infection, not multiple illnesses or injuries over the years). Because it is so long, it generally shocks people a bit, and I think that might be why they remember me, at least in part anyways.

2) I was, once, more the youngest person in the waiting room. This is something I find happening all too often. While pre-op is at the children's hospital, along with my infectious disease specialist, I spend most of my time at the General Hospital. The youngest patients there are eighteen, except sometimes in the emergency department, so twenty-three is still quite young. Being the youngest person in the room most of the time just reinforces the notion that I am doing things that I shouldn't be doing, that my peers won't be doing for thirty, forty, or if they are lucky sixty years. Just to give you some perspective, I started seeing my current surgeon when I was nineteen; it wouldn't surprise me if I was one of if not the youngest patients he has been seeing for such a long time (over four years now). I could be wrong, of course, but I doubt it. Not many young people go through such drawn out fracture related problems.

3) Everyone is always really impressed with my positive attitude about everything. I have been thinking about this quite a lot recently. First, I think that you have to stay positive, along with having a twisted sense of humor, to get through everything I have been through. I mean, we are literally talking over a decade of infections, appointments, scans, surgeries, blood work, and so on. I think that you need these things to get through a medical crisis or chronic illness at any age, but they are especially important at such a young age. If you don't have some positives and the ability to make some horrible joke about your bad health, what do you have left? Not your good health, that's for sure! Second, I think that I can remain so positive because I don't know anything different. I have been dealing with this since I was thirteen and it has just become so damn normal. I don't know anything different then scans, crutches, doctor's, surgeries, all the things I listed above and more. On top of that, I have missed out on a lot because of my health. Even now, I should be in my pre-grad placement for school, six weeks away from graduating with my friends. But instead I am at the hospital for a pre-op appointment, preparing to have surgery to deal with the rotten luck that is my leg and the splinter of bone sticking out into the back of my leg. But I stay positive - it's just what you have to do to get by. And third - I have my bad days too. But as much as I do have them, I don't choose to share them with everyone. These are highly personal feelings. My mum sees what I go through, my doctors know that I am worn out and tired, the few friends that stuck around when I got ill support me what I have bad medical news. But the average person on the street, at the mall, or in the pre-op waiting room doesn't, and they shouldn't have to. Everyone looks at me with either pity, sympathy, or a friendly encouraging smile. You return kindness with kindness, so the people who smile get a smile back. The best way to overcome pity is to show that your circumstance does not reign supreme and have complete control over you, so I smile back at those people too. And to the people who have sympathy I smile all the more, because I neither need nor want their sympathy. Yes, the cards I am dealt kind of (okay, really) suck, and it hurts deep down that all I remember is being sick and surgeries, but there is more to my life and it is not all bad. I wish that people would know that. So I smile to those people too.

4) After talking for a bit, the nurse who took my blood said that I am more like a 43 year old then a 23 year old. She said this in regard to everything I have been through medically. Not only am I going through things that young people don't go through, going through those things shapes my perspective and outlook on life to that of someone who is generally much older. That is, older people have had more time to go through stuff, so they usually have experienced more than the average 23 year old, but for me it is different. I experience things that I shouldn't - thoughts about health, your own mortality, worst case scenarios, making difficult medical decisions, what ifs etc. - things my peers don't go through. So that makes me different than them. Not only am I missing out on what they get to do, I am being changed as a person by this situation. And I wonder if it will even be possible to experience the things my friends/peers do once I am better because I have gone through so much and it has changed who I am and how I look at the world. Somehow, going clubbing or worrying about a dating app or shopping trip to the mall seems so much less important when you have had to fight for even the little things, like being able to walk. I don't know. I think I will do a lot more thinking on this topic over the coming months. But I do know that I am different from my peers now - it is not all bad, but it is very sad to some extent too.

These are heavy subjects to think (and talk) about. They all crossed my mind at some point during my pre-op appointment. I tried to be a bit younger and carefree afterwards. I went to the gift shop and bought two pairs of earrings. My rationale?  I deserve something pretty after the bad news of last week and going through pre-op yet again. I need to de-stress and act my age. Buying earrings does that for me XD I couldn't get the greatest pictures of them though. M favorite is the pair with the little birds!

On a completely different note, today was the day my mum finally realized that she couldn't beat the parking lot system. Parking costs a certain amount depending on how long you are at the hospital. This amount increases every half hour or so. If we are lucky, we are in and out real quick and parking only costs 4.50. This is rare. The average runs about 9$, but there have been more days recently that it gets up to 20 or 25$. It always sucks when you come a few seconds to late and the price has jumped up on you. So my mum gave in and bought a pass that can be used ten times. The cost of the card averaged out to about 9$ per hospital appointment. Sure, there might be the odd day we are in and out real quick, but generally not. So it kind of pays off in the end or, at least you lose a little bit less in parking fees than you normally would. Parking and gas, plus food at the hospital when needed, adds up quickly.

Surgery date, pre-op, ER, and some randomness in between

Hello everyone! This post is a bit of everything mushed together. I do talk about some stuff that is significant for me at the moment, but then there is what I guess some people would call "filler", so please feel free to skim through all this if you don't want to read the whole thing!

*Edit* On second thought, I will break this down into several posts. It's way to log to read in one go, even if just skimming along. 

Surgery Date
I got a phone call from my surgeon's amazing secretary/assistant bright and early Monday morning.. Well, not quite that bright an early. Eleven am is rather closer to noon than the start of the morning, but it was early for me because I am usually still sleeping through the pain of my morning ex fix adjustment at that time. Oddly enough, despite having a break from making adjustments, sleeping habits did not return to normal. Why? No clue. Like all else, blame it on the morphine. But I digress. My surgeon's assistant, who is just as kind and helpful as he is (which is very), said that surgery is scheduled for this Friday as hoped. The surgery is at 8 am, so we have to be at the hospital by 6. This, of course, means waking up at 4 am. Makes me wonder if I should bother going to bed at all!

On top of the surgery date, she said that I had a pre-op appointment on Wednesday (today) at 10:15 am, but to arrive a bit early to fill out the pre-op paper work. The hospital didn't send this out to me because the surgery and pre-op appointment were on such short notice. No big deal. I have filled out their forms too many times as is. By now they have become old hat.

It was a relief to know that my surgeon had been able to secure staff and OR time for this Friday. It was the earliest date that he was available for it. Between getting the news last week and surgery itself is already a week, so we obviously didn't want to add even more time between stopping the fixator adjustments, thus risking that the bone in my leg heals prematurely.

At this point (Monday), I was still a bit in shock about the whole thing. I mean I usually have weeks, if not months, to prepare for surgery, and now it was happening within a week. In the past I might have complained that six weeks was such a long time to have to wait, knowing the inevitable pain and discomfort that surgery brings, but a week? That doesn't leave much time at all. Fortunately I have done this so often that I can quickly pack an overnight bag with the essentials and a few small comforts, but it really doesn't give you much time to mentally prepare yourself. This has led me to belief that there must be some optimal time between finding out you need surgery and actually getting it. I wager it's about two to three weeks, but is that realistic in most scenarios? No. Anyways, I have adapted to life with my fixator so far so I will just have to do it again. And like everything else, I will get through this surgery and end up smiling on the other side of it. Once the nausea and anesthesia were off, I always do.

Pin Site Care - Supplies

Link to Pin Site Care - My Routine is here.
Link to Pin Site Care - Video is here.

Ever since getting my external fixator, pin site care has become a routine part of my life. It is done at least once day, every day no matter what. That it, unless my pins are draining more than normal and then it is done even more often. I all the time I have had my fixator I only missed doing pin site care once, which was when I got a stomach bug after Christmas. Pin site care is an important part of having an external fixator because it helps to prevent pin site infections, the last thing you want when you have metal pins sticking through your skin straight down to the bone. The last thing I want is to get another bone infection simply because I didn't take proper care of my pin sites!

Seeing that I have been doing pin site care for the last three months and how crucial it is to maintaining happy, healthy pins, I thought that I would do a series of blog posts about pin site care. Hopefully these posts help anybody else out there who has an external fixator and stumbles across my blog or clarifies what I mean when I mention pin site care for those who don't have a fixator. This first post will be about the supplies I use for my pin site care.

When I mention pin site care, I am referring to both how I clean my pins and the dressings I put on them afterwards. You can't really do one without the other. I mean, it wouldn't really make much sense to take off an old dressing and apply a new one without cleaning things up first, or to clean my pin sites but then leave them open to the air. Either way, germs could get at the pin sites. It takes me a variety of supplies to get through the entire process.

1) Hand santizer - used to clean my hands before, during and after pin site care. The only substitute it good old fashioned hand washing with soap and warm water, but that it slightly inconvenient when you are already sitting down, half way between a dressing change. If possible, try several brands until you find one that isn't too rough on your skin because it does tend to dry your hands out over time. Also, don't touch your lips/mouth after using it, because it tastes absolutely horrendous!

2) Sterile saline, used to clean the pin sites. The stuff I have comes in a bottle with a little nozzle - I just gently squeeze and the saline comes out. Each bottle can be used multiple times.

 

3) Non-sterile gauze sponges - used to prevent the rest of your leg from getting wet when you use the sterile saline. Comes in a big paper package, like a giant soft squishy cube.

4) Sterile gauze sponges - used to dry the pin sites after they are cleaned with the sterile saline. Two per pack.

5) Hydrogen peroxide and cotton-tipped applicators - used to clean the pin sites. A bottle of hydrogen peroxide is, obviously, used many times. There are two applicators per package. They look like over-sized q-tips but only one end has cotton on it.

6) Sterile non-woven drain sponges, in two sizes: 2"x2" and 4"x4". These are the dressings I put around my pins once they have been cleaned with sterile saline and hydrogen peroxide. Two per pack.

7) Scissors - used to cut the sterile non-woven drain sponges. My scissors come from a suture removal kit, which is sterile. The kit also contains tweezers, which are much flimsier than the scissors, and a tiny bit of gauze, neither of which I use. But I am keeping the tweezers - you never when they might come in handy for an art project! Notice how the top of one part of the scissors had a little curved-hook shape. This is really helpful when you have to cut off a bit of dressing that gets stuck around a pin.

8) Alcohol swabs, used to clean the scissors before you cut the non-woven drain sponges. This makes sense because the scissors, no longer sterile after their first use, would contaminate the sterile dressing, therefore defeating the purpose of having a sterile dressing to begin with!

9) Medical tape - used to secure the dressing to my leg once it is complete. I prefer pre-perforated fabric tape.

10) A nice container - I prefer to keep a week or so worth of supplies in a plastic container where I do my pin site care. Then I top up whatever I am running low on from the big cardboard box that the home care company sends each order of new supplies in. This saves room in the kitchen and generally looks much nicer. I find that it also makes it easier to evaluate what I am actually running low on and easier to find something quickly rather than having to rummage through a whole big box of stuff.

11) It is also helpful to have a small garbage bin or at least a small garbage bag handy so that you can easily depose of the old dressing and empty supply wrappers as you complete your pin site care.

Here is everything together - all the supplies I need to complete my pin site care once:

And that's that for supplies. My next post will outline how I do my pin site care and the one after that will be a video of me actually doing it.

Caring For Your Feet - Advice

This is going to be a fun, short little post. A lot of my recent posts have been rather lengthy. This isn't necessarily a bad thing because I have talked about some heavier topics and vented a lot about the bad news I got from my surgeon on Friday. But it is nice to write something a bit shorter. Plus I have been feeling pretty dopey and drowsy the last few days, as if the pain meds are catching up on me. And today they have definitely caught up. It feels like the inside of my head is spinning. So a short post is much more realistic than a long one.

Today I am going to talk about feet. Yes, feet!
It might seem like a silly topic. I mean, everybody has feet, and how much attention do they really need? But given my circumstances it is actually something that is pretty important.

After surgery in August to remove the infected section of my tibia, my leg was in a cast for two months. Each time that I saw my surgeon and my cast was replaced, my foot appeared a bit more dried out. When the final cast came off in October, there were large patches of dried out, flakey skin on my foot. I had experienced this before in 2006, but much worse, when my leg was in a cast for seven long torturous months. Another problem with the cast was being able to trim my toe nails - quite a challenge when the type of cast I had made it difficult to bend my leg and reach my toes and the cast actually extended over some of my toes! When I got home I spent a lot of time with my foot soaking in the bathtub and scrubbing off all that dead skin. It was pretty disgusting. I was also finally able to trim those toe nails! I felt so much better after being able to these things. In many ways, this can be related to the previous post - how physical changes can affect your self-esteem, confidence, and body image.

Fast forward six weeks and I was coming home with an external fixator. Let me tell you, that thing hurt! You might as well have been asking me to perform aerial acrobatics if I needed to trim my toe nails! And because I couldn't get my fixator and pin sites wet, the skin on my foot dried out pretty fast. Going out in public with dry flakey feet, cracked cuticles and long toe nails does not boost your self-esteem one bit. I take pride in looking clean and put together, so the foot situation felt horrible.

Over the months, I have figured out some ways to take care of my foot despite the fixator. In some ways, this has become a bit easier since the initial pain and trauma has subsided. All of the things I do make me feel a little bit more comfortable and better about myself. So here are my tips for caring for your feet despite a cumbersome external fixator:

1) Do your best to trim your toenails. If you can't, ask a loved one to do it for you. It might feel awkward, but it beats going in public with inch long toe nails. A plus is that this might not be as awkward a request as it seems. After all, your parents trimmed your nails for you as a child, right?

2) Even if you can't get your fixator wet, it might be possible to get just the bottom of your foot wet. You can do this in a number of ways: 1) sitting on a shower chair in your bath tub, fill the tub with nice warm water just high enough to immerse your foot in 2) likewise, you could find a bucket or container from the dollar store that is large enough to fit your foot in. Sit on a chair with a towel on the ground to prevent the floor from getting wet. Ask someone to fill the container with warm water and place it on the towel. Place your foot in it and relax. You could even add some bubble soap or body wash and have a bucket with clean water to rinse it off. Just remember to have a dry towel at hand to dry your foot off with once you are done 3) use a wet wash cloth to rinse your foot with. I find options one and two preferable to this, but sometimes it is all you can do and that is better than nothing at all.

3) When you are soaking your foot, use a loofah to get rid of all that dry flakey skin. Dead skin is less likely to flake off when you can't regularly wash your foot or use it which would allow the natural wear and tear of daily life to help slough of the dead skin. The loofah will help remedy this. Don't do anything that makes your pins sites hurt, e.g., pulling your foot to the side to reach part of your heel.

4) After you soak your foot, try to push your cuticles back a bit. Over time, they tend to creep forward over the nail, making your toenails appear smaller than they are. You should be able to find a small nifty tool at store selling cosmetic items. They are generally used on finger nails but could easily be used on toe nails as well. It is best to do this when the cuticles are wet because this makes them soft and supple.

5) Speaking about cuticles, you could try some cuticle cream. This will help keep your cuticles moisturized and prevent them from cracking. I get cuticle cream from Bert's Bees and it is absolutely lovely.

6) Use moisturizing cream on your foot - this will help keep the skin from drying out and generally just feels good to do!

7) Give your foot a message. If you are fortunate enough so have someone who is willing to do so, you can ask them to message your foot. Not only will this feel nice but it might relax your foot a bit and ease up some of the tension caused by the external fixator, not to mention muscle atrophy.

8) Paint your toes nails a fun colour! I haven't done this myself, but I have friends who have and they say it really cheered them up and helped them feel more normal =)

9) Wear nice cotton socks. These are soft on the skin and will help protect your foot from getting hurt. This is especially important if you have lost sensation in parts of your foot, like I have. A sock might offer some protection if you stub a toe or place a numb portion of the foot on something sharp. Find comfy big socks or slipper socks, perhaps made of wool or flannel, to keep your foot warm. I don't usually sleep with my foot under the covers because I find the pressure of blankets on the fixator unpleasant. Thick socks help to keep my foot warm at night. Furthermore, choose socks with bright colours or funky patterns just to cheer things up a bit. I have yet to meet a person who doesn't like fun socks!

10) Last but not least, try organizing a spa day at your house, focusing on feet. Have friend come over to watch movies and paint each other's toenails. Perhaps you could organize a sock exchange. Or everyone who comes over could bring their favorite moisturizers and cuticle creams and you could try whatever takes your fancy. You don't have to stick with just toes either. You could include nail polish, perfumes, ankle bracelets and rings, whatever will make the night fun! Not only will your feet feel pampered, but you will get to socialize a bit and hang out with friends, something that is quite difficult to do with something as cumbersome as an external fixator.

And that's that, my ten tips to care for your feet when you have an external fixator! Even doing one or two of these things will help your feet feel better and help boost your confidence and body-image despite the difficult situation you find yourself in. At the end of your day, you will have very happy feet! And happy feet makes for a happy you!

Self esteem, body images, and illness or injury

It's late and I can't sleep. Solution? Jump on the internet, put on some music and delve into the pile of blog post ideas that I have been accumulating ever since that surgery that sentenced me to a minimum of eight months on crutches. It's no match for being able to sleep comfortably for a solid eight hours, which is literally impossible when you have an external fixator, but it beats lying wide awake in bed for half the night.

My inability to sleep set aside, this is a topic that I have been meaning to write for a while. It has to do with how we view ourselves in relation to our bodies and how that view changes after an illness or injury that physically alters our bodies.

I want to begin by asking you what you did this morning. I don't mean things like hitting the snooze button six times or banging on the bathroom door because you teenage daughter was taking her sweet time in the shower, therefore making you late for work. I want you to think about the things you did this morning to look good. Perhaps you woke up early to spend an hour fussing with your hair, unhappy with it no matter how you styled it. Maybe you tore apart your entire closet trying to pick out the perfect outfit, lamenting that you have nothing to wear in the process. Or you couldn't figure out which pair of shoes, the wedges or the pumps, went best with you new winter coat.

In all likelihood, there were three primary driving forces behind the choices you made about your appearance this morning: 1) the desire to reflect who you are 2) thoughts about how other people will view you based on how you appear and 3) the practicality of what you are wearing given what you have to do and the weather. Sometimes these three things go hand in hand but as often as not they are in conflict with one another. If it makes it easier, you can think about the choices you make about your appearance in terms of individuality, a desire to conform or be part of a group, social standards of beauty, and/or the social rules that dictate how one looks based on the occasion or setting. All of these influence your choices; based on a situation, one may have more sway than the others.

Regardless of the choices you made this morning and the driving forces behind them, it is clear that physical appearance is an important part of our society and who we are. Fashion magazines, runway models, tv commercials for cosmetics, the newest line of clothing at the trendiest store at the mall. What is socially acceptable to wear outside, to the corner store down the street, the movies, a first date, a funeral, job interview, wedding, casual get together, visit with the in-laws. Can I find stylish clothing to work out in? Do jeans count for casual Friday? The list goes on!

On top of the choices we make regarding clothing, make-up and hair style are the ones we make about our bodies. In our society, there is a tremendous pressure to have a perfect physical physique. What is too fat, what is too thin? What it the difference between being healthy and physically fit? How do I get rid of my love handles and tone my upper arms? Is my waist small enough? Will my butt look okay in this lingerie? Once more, the list goes on!

Given all these things, it is clear that between choosing what to wear, working out or dieting, or worrying about what other people will think of us because of our appearance, we all spend a good chunk of time trying to achieve a certain look. In many ways, how we look is an expression of who we are. But what if an illness or injury prevents you from achieving that look? What if you are limited to clothing that doesn't represent who you are or achieve what you want it to? What if, due to physical limitations or limited energy, you are unable to apply make-up, get out to the nail salon or style your hair. Are you still able to be confident in who you are even if you are no longer able to represent yourself through your appearance. What is your identity or self-esteem based on?

Those of you who regularly follow my blog know that I have an external fixator on my right leg. It is big and bulky and inconvenient. I can't wear jeans, tights or dress pants because they can't fit over the fixator. Likewise I can't wear at least half of the cute make-my-butt-look-good pajama pants that I own. I am resigned to baggy pants, skirts and pajamas bottoms that are many times my actual size because they are what fit over the fixator. As a result of the fixator I am dependent on crutches, a walker or a wheelchair. Getting around with any of these mobility aids it exhausting and time consuming, not to mention sweaty. As a result, I spend the majority of time in my bed wearing loose, baggy clothing. It is impractical to wear frilly shirts or tight skirts that slowly rid up throughout the day as I toss and turn trying to get comfortable in bed or as my crutches rub against them as I hop along. It doesn't make sense to spend an hour getting dressed when I am spending the day at home in bed or, at best, at my computer desk. So I wear baggy sweater and sweat pants. The constant dose of pain medication I am on makes me tired and slightly dopey. As a result, it is sometimes hard to concentrate or try to work out an entire outfit. Even the simple act of showering is exhausting. On top of all that, crutches don't match anything in my closet anyways. As anyone who requires them knows, they are grey and drab and are the first thing anyone notices about you regardless of how you much time you spent carefully selecting what to wear. Am I still the person I am despite not being to wear what I want?

The desire to wear something, for whatever reason, is hampered by my fixator, crutches, how tired or dopey I am and/or my pain level. The question is, am I still comfortable and okay with myself if I am not able to represent who I am through my clothing? Am I still who I am if I cannot do so or does my physical appearance dictate who I am? Will I think of myself differently if people look at me different than usual based on my clothing? In a society where so much depends on appearances, these are difficult and highly personal questions to answer. Furthermore, having an illness or injury dictate, at least in part, you appearance for a short period of time is much different than it affecting your appearance in the long run. Having to wear sweatpants or pajamas for a week or so because of a sprained ankle or broken wrist is one thing; it might even be nice to get a break from the pressure to look good. But what if that week turns into a month, half a year or longer? What if you can't wear the things you want or that society approves of when you have to leave the house? How will that affect how you look at yourself. If it affects how others think of you, are you okay with that?

As previously mentioned, the body itself is also a significant aspect of physical appearance and our identity. There is a lot of pressure for women to be thin and toned, for men to be strong and muscular. There is constant pressure to conform to the standards society sets. But sometimes an illness or injury makes it difficult or even impossible to meet those standards, regardless of if those standards themselves are healthy/realistic/achievable or not. A person with a thyroid disorder might be incredibly skinny or carry some extra weight that is hard to shift. Someone who has undergone extensive surgery may have large scars that are highly visible and permanent. A person who has been ill for many months may have lost a tremendous amount of muscle mass. Suddenly, a person no longer has that flawless perfect body. A person undergoing chemotherapy might have a PICC line or nasogastric tube, both things that are visible and different, therefore acting as a beacon for attention. A person who cannot walk is in a wheelchair. These are all things that change how people look. They are also often the first things that other people notice about someone else. It doesn't matter that you have a perfect hourglass because a can or feeding tube can symbolizes that your body is not indeed a perfect flawless body after all. Your make-up and hair, which took time and effort to apply, may be overlooked when people see a cast on your leg, an arm in a sling, an oxygen tank, or some other visible sign of illness or injury. These things that alter your physical appearance and symbolize illness or disease alter how other people look at you which, in turn, may alter how they interact with you. What affect will this have on you, your self-image, your confidence and self-worth?

I know that I struggle with my external fixator. People stare at me when I go out. But they are not staring at me; they are staring at the fixator. And even when they realize that I see them staring at me, they continue looking at my leg anyways. I am self-conscious, probably more so than before I relapsed. I was the same way when I had the PICC line last summer. I preferred to keep it covered, out of site. I still know who I am, but I regret that I cannot fully express it and that my fixator and crutches change how people see me. I am no longer seen as the girl with the cute pixie cute who is always smiling. Now I am that poor thing who has obviously had some serious injury and gone through major surgery; when I am in my wheelchair, I am the woman with mobility issues. People might still notice my smile, but it is always in the context of my wheelchair, fixator, or crutches. I know that these things affect how others see and think about me. Does that mean that I should think differently about myself?

Furthermore, physical changes can have a major impact on how a person thinks of him- or herself. If you enjoy sports and want to be physical fit, you might be proud of your muscles and abs - they represent achieving you fitness, physical and lifestyle goals/desires. If a woman desires a sun-kissed look, she will be happy with a nice glowing tan. If you are a burlesque dancer you might be really fond or even proud of your hourglass figure. A girl who aspires to be ballerina needs to be graceful; being thin and toned might help her feel that way. And most importantly of all, people want to be comfortable in their own skin. They want to feel like their bodies are normal. So what happens if an injury prevents you from working out and maintaining you muscular body? You become very ill and anemic and are therefore always extremely pale? A slipped disk prevents a ballerina from dancing and excising, so she cannot longer dance, can't maintain her toned body and therefore no longer feels graceful. Think of the average person or yourself. If you severally break your leg and spend an extended period on crutches, the muscles in your injured leg will waste away or atrophy. How would you feel watching one leg shrink and shrink and shrink, almost down to the bone while the other remained healthy and normal? Would you still be okay with your body or would you see it as ill or undesirable? How would having something prominent like a nasogastric tube, PIIC line or external fixator make you feel about your body? Weak, pitiful, unattractive? How would changes to your body, like scars, an amputation, muscle atrophy, change how you think about yourself. Do these changes make you less desirable, less deserving of love, ugly, a failure? How do they affect your self-esteem and who you are as a person?

When it comes down to it, our physical appearance - clothing, body type, jewelry, make up, and so on - plays a tremendous role in our lives and how we think of ourselves. In many ways there is nothing wrong with this. Our bodies are naturally a part of who we are and what we see/do affects how we view the world and interpret things, make sense of the world. It is, however, important that our physical appearance does not solely determine our identities or become the primary focus of our lives. It is also important that one's self-esteem or self-worth is not reliant on physical appearance alone. This pertains to everybody, regardless of if they are healthy, ill, injured, or disabled. I want to stress, however, that it is extremely important for individuals who have undergone a significant illness or injury, that changes to one's body or one's ability to achieve a certain appearance should not determine ones happiness or identity. It can be very difficult to separate these things from one another. I myself have been struggling with this, especially since I got my external fixator. But it is important to be confident in who you are as a person and to be able to face the world, be it in your favorite jeans or sweat pants, looking awake or energetic or pale and tired, and feel that you are still worthy of love and joy and comfort and affection. Being able to detach your self-worth and self-esteem from your physical appearance will not only make you happier in the face of your injury or disease, but it will help you remain positive throughout the course of your injury or illness and help you stay motivated to reach goal and get better; it will also help you battle the other things that accompanyserious injury or disease, like loose of independence, inability to work, and so on.

It can be devastating to have drastic changes in your appearance when illness or injury already steal so much - independence, dignity, mobility, etc. It is normal to mourn about these loses, to feel sad, angry, resentful. I have been there; it is okay to feel like that. But in the end it does not determine who I am and whether or not I am able to be happy.

And finally, somewhat of a cliche I guess, it is important not to judge others too harshly on their appearance. You never know what they might be going through, like serious illness or disease. Treating them based on physical appearance alone or commenting on changes like muscle atrophy, various tubes like PICC lines, NG tubes, colostomy bags and so on, assistive devices, may drastically influence the self-worth and self-esteem of individual already dealing with the effects of a serious illness or injury; an individual who in all likelihood had to spend a lot of time and energy to even get out of the house who now feels horrible because they didn't wear the right shirt or have big enough biceps. It is better to be kind and complement a smile than to judge on looks alone.