Invisible Illness Awarness Week

Today is the first day of something awesome: Invisible Illness Awareness Week

The website http://invisibleillnessweek.com/ is an online community that offers advice and support for individuals living with a chronic illness, or more specifically, a chronic invisible illness. It also provides information for people who have friends/family with an invisible illness. An invisible illness is just that, a medical diagnosis that someone is living with but is not apparent just by looking at a person.

The list of invisible illnesses is extensive (and growing) so I won't get into listing them all (which is impossible anyways). Because the list is extensive, a group of individuals who all have an invisible illness will have to deal with different symptoms, prognoses, treatments, etc based on their individual diagnoses. But the one thing that they all share is that other people can't tell that they are ill simple by looking at them. As a result, many people with invisible illnesses have the same experiences - lack of understanding, validation, and support from family/friends/sometimes even medical professionals, isolation and loneliness, uncertainty about the future. I could keep going, but you get the drift.

Invisible Illness Awareness Week is an annual event held to promote awareness of the prevalence and impact of invisible illness. Instead of being located at an actual venue, like a conference hall or school gym, the event is held online - this speaks to the nature of the site itself, which aims to include people with invisible illnesses. People with invisible illnesses often fight with fatigue and/or pain, making it difficult to plan outings or travel long distance. So an online event with chat forums, blogging, Facebook, etc. allows for the inclusion of everyone. The use of blogs, twitter, and facebook is encouraged.

This year, Invisible Illness Awareness Weeks runs from Sept. 28 to Oct. 9.
The theme is "My Invisible Fight". People have been asked to write and share a blog post about an aspect of their invisible illness. I choose to talk about my struggle finding happiness despite feelings of loneliness, vulnerability, and defeat (link to that post is found here).

Some of the suggested topics included:

• a fight that you have that no one sees.
• one decision you fought to make that has been a good thing (or not so good)
• what treatment or medication did you fight for?
• how you keep fighting to live when life wants to get you down
• why you fight for awareness as an illness advocate (or just some man or woman who likes to make some noise)
• what advice you would give someone recently diagnosed about how to choose what to fight about and what to let go of.

An invisible illness has played a tremendous role in my life for almost ten years. Aside from the medical aspect of my diagnosis (chronic osteomyelitis), the loneliness and lack of understanding that I experience are probably the most difficult things that I have to go through. I think that sometimes all it takes to feel a bit better is to have someone who truly gets "it" and "it" being what you are going through. Having a support network of people who genuinely care helps us to get through the tough times - a shoulder to cry on, somebody to vent to when it all gets too much, or a person to go out with for a regular girls night out just to feel normal and forget being ill for a while. And I think that is what Invisible Illness Awareness Week is all about - creating that inclusive environment in addition to raising awareness in the general public about what it actually means to have an invisible illness.

That all being said, I think invisible illness awareness is really important. Until you ask somebody, you never know what they might be going through. So I encourage everyone to explore the website and this year's theme (My invisible fight) and, more importantly, to treat people with kindness and empathy.

Best wishes,
Jedida

Ordering out

I am 23 and I just ordered pizza at home for the first time in my life. I found the experience highly amusing, from being able to order online instead of by phone like I expected to do, to "constructing" the pizza online, which involved selecting from various options and watching as the pizza on the screen changed as options where added/taken away, to the little tracker provided online after you submit your order that shows you where your pizza is at.

Honestly, I have never seen something quite as absurd as this: 

 

The tracker goes through various steps: order placed, prep, bake, quality check,  and out for delivery. I laughed a bit at the quality check part XD

And then the question - Do people actually sit in front of their computers watching the tracker until there pizza arrives? 

It is, indeed, a little bit absurd.

The pizza arrived in good time and it was still hot and most of all, I enjoyed it (as any person eating pizza should! It is a hard food not to like...). 

Today has been a good day. Very tired. But mum and I went out for a few hours. We drove around town gathering clues to make a treasure hunt for an aunt and uncle who just celebrated their birthdays and wedding anniversary. At each location, they will be given a clue that, when answered correctly, will reveal a secret letter. After collecting all the letters, they will have to match them to another number to solve a phrase. For example, place the letter from location one on the blank space with the number 15 underneath it. Some of the clues got quite creative. At one location there were several flags, one American, two Canadian, and a pirate flag barely hanging onto a pole. The clue I came up with: One of these flags is barely hanging on. What flag is it and who does it belong to? (Answer: A pirate flag, it belongs to pirates). What does the owner of this flag say? The answer sounds like a letter.

I will give you a minute to figure it out.

Get it yet? Here is the answer. Pirate say "argh". So the secrete letter is R. 

Mum and I drove all over town to get locations for the clues - 22 in total. Tomorrow we will drive the route again to get down any extra directions we may need to include, and then a third time as if we were completing the treasure hunt to make sure it all makes sense. It seems like a lot of work, and it is, but it is also a lot of fun and a great way to get out of the house and do something =)

Hoping the relative enjoy it as much as we did making it!

My illness might be invisible but it's certainly not invincible

The past year has been a roller coaster ride. Between moving out, gaining more independence, and working hard in the nursing program I am enrolled in to the anxiety of multiple scans and their results, a brief reprieve when I thought everything might be ok, and then the crushing words from my specialist that the chronic bone infection had indeed returned, I have felt more than my fair share of ups and downs. There were moments when I felt great, filled with life and hope, energy, excitement, just being young and looking forward to all the good things in life to come. On the other hand, there were many moments when I was exhausted and gutted, no energy, pale and sweaty, in pain and feeling a tad bit desperate and that life was unfair. "Why should I be sick... again?" is something I found myself wondering quite often. So comparing the last year physically and emotionally to a roller coaster isn't that farfetched. It's just a roller coaster that never seems to stops and slows down or speeds up without warning. Fortunately, the ride is pretty calm right now, giving me several calm restful months before we plummet down the next hill (the dreaded external fixator...). I am sure the ride will pick up for a while after that.

But at other points this year, time itself crawled by incredibly slowly, like an arduous mountain trek. The days waiting for scan results felt like months as the tension (nervous anticipation?) inside me built. The second hand on the clock seemed to stop as I lay on my bed for hours at a time, doing nothing but staring at the ceiling, exhausted and deflated, wondering why none of the antibiotics I was put on seemed to make things better. Ironically, sometimes those same hours would seem to fly by, back on the roller coaster. I would lose entire afternoons or days doing absolutely nothing. There was the anxiety and fear of surgery and the pain to follow; lying in bed pondering "what if things go wrong?"; and that one question that's always there, lurking at the back of my mind, trying to ignore it but never fully shaking it off "What if the infection comes back anyways?" Pain and worry and fatigue and fear. They make time slow, thick like molasses.

Roller coasters and mountain treks are not so different after all. I can't control either of them; both require me to give up control and go along for the journey or ride; both have their steady climbs and rapid descents; the finish line always hidden behind the next crest. That is how chronic osteomyelitis makes me feel. It makes me feel like I don't have control over my life; that I am at the mercy of this horrible thing that I can't even see, something inside me. Most of all, it makes me feel invisible and vulnerable, like I have been defeated.

Chronic osteomyelitis is invisible. If you saw me right now your first conclusion would probably be that I broke my leg, thanks to my cast and crutches. If you see me in two months, it would be safe for you to assume, thanks to the external fixator, that I have been in some horrible accident. But if you saw me a month ago, just before surgery, you couldn't tell at all. You might say I looked tired and you would be correct, but you wouldn't be able to tell that I was really sick. You wouldn't know what was wrong with me about a month before that, when I was getting a PICC line put in. Or five month prior when I burst into tears walking out of the fracture clinic after hearing my surgeon say "What the... what is that?" when he looked at my MRI scan results, or the month before that as I anxiously sat by the phone waiting for Bone scan and CBC scan results. The nurses at my clinical placement couldn't tell what was wrong with me either. They could tell I was pretty exhausted, that I left early several times due to fatigue, that I missed part of a shift to take myself to the ER, that my clinical instructor sent me home one morning because I looked so ill, that I stopped going to clinical halfway through the semester, but they didn't know what was wrong. During one shift, I was talking with the nurse I was working with about a patient with osteomyelitis. I quietly said "I have that, chronic osteomyelitis". The nurse looked at me incredulous and said "really?" Her disbelief was clear. Acute osteomyelitis is uncommon as is, let alone the chronic form... People expect to see me limping, or unable to walk at all without excruciating pain, not a vibrant young woman in school and completing twelve hour shifts on my feet. And most of my classmates didn't take me seriously; they thought I was being dramatic, over exaggerating; or maybe they just couldn't understand, they are all so young and healthy... invincible. Only the older one's understood; the ones who had witnessed friends/family go through illness, or been ill themselves. Chronic osteomyelitis is invisible. People do not understand it because it is invisible and not well known, it is not common like cancer or kidney disease; they don't understand how much it impacts my life because the way I look does not match their ideas about what 'sick' looks like.

Chronic osteomyelitis is invisible in other ways. I don't expect people to know what bone infections are and how they can impact a person's life. It would be unfair to expect that of my friends and even family members I don't regularly see; it is completely unfamiliar to them, often unheard of, so why should they know about it? But I had hoped that my friends would actually care about me. It is amazing, once the semester ended, I moved back home, and I had surgery, how quickly my friends stopped talking with me. Only one friend came to visit me in the hospital; several friends texted me for about a week post surgery, but that slowly trickled to a stop; now most people don't even respond when I send them a text, asking them how they are doing or enjoying their new clinical placements. No one ever spontaneously messages me. It is amazing how quickly a person falls out of their social group when they can no longer participate. I thought that I had made several good friends throughout the last two semesters, people I spent almost every weekday with for eight months. We studied together; went out for tea/lunch; went to the mall; hung out between classes; talked about our lives, families, past experiences, hopes and dreams. At the start of the program, the course coordinator said that our clinical groups would become like family, and that we would remain friends with those people for the rest of our lives. I believed her, all those early mornings we spent chatting on the bus, bleary eyed and eating our breakfasts, the lunches spent laughing in the cafeteria, helping each other de-stress during exams, celebrating passing our clinical exams. It doesn't feel like that anymore. In a matter of 2-3 weeks I was no longer part of the group. The same thing happened in 2012 when I took time off from university to have surgery, and even in 2008 when I missed the first month of grade eleven.

I feel invisible. I can no longer partake in society the way that I used to. As mentioned above, most of the people I thought were good friends weren't really friends at all. People ask what happened to my leg, but they don't really want to hear the answer when I tell them it is more than just a broken bone. When they ask how I am doing, they expect to hear the typical response "I am good". People stared at me when I had the PICC line, they stare at me now with the cast and crutches, and they will stare even more once I get the external fixator. They look at me like I am different; I can see them eyeing me up and down, their questions pass behind their eyes but never reach their lips, they glance away when they notice me staring back. Being different sets you apart because people fear the unknown. Talking about my health reminds them of their own mortality and vulnerability, and most people can't handle that. Therefore, they ignore. So I feel invisible. Aside from that, I don't have the energy to do much outside the house, so that makes it difficult to be social.

Invisible and defeated. The bone infection went undiagnosed for many years. My surgeon at the time refused to believe that anything was wrong and ultimately told me not to come back to see him; my family doctor shrugged off my concerns and told me to stop worrying. The road to a diagnosis was long and tiring. At that point I had already had two surgeries, years of pain, swelling, sinus tracts on my shin, inconclusive scan results, and fatigue. When I was diagnosed we hoped that oral medication would be enough, hoping with every set of new scans for healing and improvement. Six months later there was surgery number three and two months of IV antibiotics, then more scans and oral medication. Sixteen months of treatment in total and I was exhausted. Then slowly the return to normal life, like coming up for air after a deep dive, convincing myself that the infection was gone, that every ache and pain was not a bad sign, regaining strength and confidence; getting a job, graduating university. Life was good! And then the signs that something was amiss slowly returned. I remember convincing myself that it was nothing and that my leg was ok, only to be followed by the realization that something was quite wrong and that I needed to go back to my specialist. Then followed the appointments and scans that ultimately confirmed the relapse. But only after I had been given the all clear first. Then being told that I should wait to have surgery until after I graduate. There was hope that I could just finish school and get a job like my classmates/friends. Followed by the worsening of symptoms and feeling worse than I have ever felt in my life. IV antibiotics. Exhaustion, Pain. Surgery number four. And now the hope that the doctors, my doctors, can fix me, paired with the fear and worry that the infection will come back anyways. But I am not convinced. I have been at this point before, hoping and hoping and hoping, wishing I was better. It was a long road to better, but I eventually did get there, only for it to be snatched away a year and a half later. I feel defeated. How much more can I handle before I can't take anymore? Where is that line drawn and can it be moved if need be? How much do I have to fight before I can't fight anymore?

Invisible and vulnerable and defeated. Young people often feel invulnerable, untouchable. They think bad things only happy to other people. But I know that they do... I have experienced it firsthand. I felt to incredibly vulnerable when I was diagnosed in 2011, and even more so once I had been told that the infection was gone, worrying about any and all pain I experienced in my leg. And then I got better and life was back on track. I was on a marathon with a clear finish line. Then the infection returned and relapse, that ugly word, was used. Now I am on a mountainous trek with no end in sight. Life is fragile and health can easily be lost. It is much harder to get it back than it is too lose it. And it is harder still to regain confidence in that newly found health. If I can have a chronic bone infection for ten years, what else can still happen in my lifetime?

My relapse has given me a lot of quiet time; time I inevitably use to think about everything I have been through. It is easy to feel sorry for yourself and question "Why me?" or to wonder what the future will bring. But going through hard things and having plenty of time alone provide tremendous opportunities to learn about yourself. I know that I feel invisible and vulnerable and defeated. These are all valid feelings. There would probably be something wrong if I didn't feel these things. But it is too easy to give in to them. They are my feelings, but they are not the only things that matter in my life. I feel defeated, but being ill teaches you to be courageous, how to face something you are absolutely dreading and do it with a smile anyways. It teaches you kindness and compassion and empathy; that there is always hope and a reason to keep fighting. I feel invisible, and perhaps in some regard I am, but I have joined online support groups and made connections with people who I consider to be real friends, who care about how I am doing, message me when I have been offline for a while, offer words of comfort when I struggle, and vice versa. Some of these people have been through what I am now going through; they completely understand it and see the bone infection for what it is and its influence on my life. I have joined other online groups not related to medical issue just for the fun of 'meeting' (e.g., chat online) new people. And I feel vulnerable, but facing the infection and the aftermath of the relapse doesn't have to mean fearing the infection/potential relapse for the rest of my life or cocooning myself in my safe little room from everything that is dangerous to my health or could use up my energy. I still have to live, and that means getting over my feelings of vulnerability. I feel better and accomplish some of the things I want to do when I believe that I can get better. The infection hasn't affect my ability to think and read and do crafts and write so it should not stop me from doing all of these things that I love so much. Most of all, the infection has taught me that there is more to life than the rat race so many people seem to be running or always planning for the future. Life is about being happy, taking pleasure in the little things, surrounding yourself with good things and friends. It is about being content. The last few months really sucked; they were exhausting, stressful, and full of pain and worry. But I have realized something. Whether I am sitting in a comfy chair, leg propped up in front of me, cuppa tea at my side, working peacefully at a cross stitch project or reading a magazine or hunched over a medical textbook studying for a test or learning new skills in clinical, I still have to find happiness. I can sit at home stressed out about my leg as easily as I can drive myself nuts worrying about some test or another. Or I can choose to do something different - despite moments of vulnerability and defeat and loneliness, which are all valid feelings, finding happiness is what makes the now good and give me hope for the future, a reason to keep going, and doing that is a choice within me.

So at times I feel invisible and vulnerable and defeated. But my battle, and it truly feels like a battle some days, with chronic osteomyelitis has uncovered a strength inside myself that I didn't know I had - the ability to keep going and to be brave even when things are hard or painful or full of uncertainty. I keep fighting because happiness is a choice. People might not be able to see what I am going through when they look at me and they might not understand it if I explain it to them, and I might feel vulnerable and defeated right now because of the relapse and the surgeries and uncertainty still to come over the next months, but the infection is not invincible. I can't control whether the infection comes back again or not, but regardless of how things play out with me health wise, I can choose to be happy. And in that way, I can defeat my chronic osteomyelitis. Just like chronic osteomyelitis, my fight to remain happy and hopeful is invisible, but it there non-the-less. Regardless of what happens, I liked to think that I will be smiling in the end. And that smile is anything but invisible =) 

Talking about comfort and coziness...

My mum made a treat for me this evening. Strawberries on beschuit (kind of like rusks) with butter and a sprinkling of sugar, a bowl of strawberries, and a big cuppa tea to enjoy after a nice hot shower. I curled up in bed to watch a movie and enjoy the food =) So not only am I squeaky clean tonight, but also going to bed extremely well fed.

Yummy!

Despite the limited mobility that missing a chunk of your tibia brings (aka sit on my butt on the couch all day), I have been losing weight over the last few weeks. It is difficult to figure out how much because of the cast and holding onto my crutches to keep my balance while standing on the scale, but I'm I think have lost 6-7 pound in the month since surgery (four weeks today). I'm never really that hungry anymore.

I have also been pretty tired the last few weeks. I was hoping it would get better the farther out from surgery I got, but that hasn't really happened yet. The following has become a routine conversation between my mum and I at the kitchen table:

Mum: Are you tired?

Me: Yeah, exhuasted. Can you tell?

Mum: Yes, you look really tired.

Not too much has been going on since I lasted posted. I started reading some books (purging my bookcase!); the embroidery project I keep mentioning but never end up blogging about is moving along steadily; going out with my best friend for dinner tomorrow night.

Other than that I am just waiting for the next surgery. Just dreaming of the day I will have my new tibia =)

Comfort and coziness

I made my bed today for the first time since surgery almost a month ago. It felt nice to do... normal. Even though I broke into a sweat spreading the sheets over the bed and arranging pillows, it was completely worth the time and effort. I am getting used to the reality that everything takes so much longer and so much more energy when you can't walk without crutches. I forgot about that since the surgery/PICC line in 2012. The hardest part was probably trying to lean over the bed to tuck the sheets between the wall and mattress while also trying not loose my balance.  I don't know how long it actually took my to do today, but way more than the 2-3 minutes it would normally take.

My days are usually pretty slow, other than an occasional smattering of doctors’ appointments. I am fairly tired most of the time, but I think that is to be expected. I have not been sleeping very well. It is hard to get comfortable with the cast. I have always rolled around a lot in my sleep, which doesn't help either. I will wake up in the middle of the night to find my leg hanging precariously on the edge of the mountain of pillows it is resting on, about to fall out of bed. Being comfortable can take a while. I look forward to the day I can sleep on my stomach again. Now that it gets colder I am actually getting under my duvet instead of sleeping on top of it with a blanket over me (hence the need to start making my bed). Last night I had the duvet and two extra blankets but I couldn't get warm for the life of me. I am not sure what to think of this; being cold was an issue with the bone infection before surgery, but I haven't had to deal with that since, so I am hoping it is weather related and nothing else.

My bed... not that anyone really cares XD I am just disproportionately proud of completing this simple task after so many weeks of being unable to. All the nice pillow cases are in the wash, so I got of the flannel ones.

Making your own bed (and even stripping it down and putting clean sheets on it like I did today) is such a simple task. Most of us probably do it real quick every morning and don't give it a second thought, or we don't make the bed at all, leaving the blankets scrunched up at the foot of the bed or something. When you become ill, simple daily household tasks like making the bed or putting dirty linen in the laundry hamper become these huge looming mountains that seem impossible to summit. Everything is so hard to do that it becomes a big deal when you can finally do something yourself. There is pleasure in doing things like making the bed. I think we run around in this crazy busy world, always working and trying to make money and a name for ourselves, trying to find the next big thing to accomplish or a spectacle to watch (or even be a part of), that we forget how beautiful ordinary life can be.

I am not sure where I am going with that thought... just something I have been thinking about the last few days. Always, back to where we started. I made my bed today and fluffed all my pillows up a bit; place big check mark beside comfort!

Now let’s get to being cozy. As I mentioned, it has been getting colder over the last few days. I think it was only ten degrees outside last night around eleven or twelve. With cold weather, dreary skies, and the inevitable rain it is time to break out the flannel pajama pants and slipper socks! Mum and I went out for a couple of hours yesterday afternoon/evening. First we went to this place called Happy Ralph's (I wore a sweater, and that's saying something because curtching around is hard work that usually results in me overheating or getting sweaty... or both), which somewhat resembles a mini farm, with goats, chickens, donkeys, alpacas, cows, bunnies, ducks, turtles, sheep, a pony and I think  a llama. There was a calf and a baby donkey. Then we went to get fries, drove to Niagara-on-the-Lake, down the Parkway, and ended up at Walmart. I had a lovely time, and it was good to simply get out of the house, to see other people and things. And I got some new pajama pants! 95% of my time is spent in pajama pants. They are by far the most comfortable thing around when you spend the majority of your time sitting down/in bed. And I dug out the slipper socks I bought a month or so ago. So, not only am I comfy with fluffy pillows and fuzzy blankets, I am now nice and cozy. Bring on the cold weather! But only the cold... we don't need any snow or worse... ice, with the whole being on crutches and missing a chunk of tibia thing.

As previously stated, it was lovely to be out with my mum for a few hours. Crutching can be quite tiring, especially if you can't put any weight on the one leg. I did it last week when I had both doctor’s appointment on the same day, and man did my arms hurt the next thing. I tell you, crutches are the perfect ab work out. Anyways. With the cast I have now (a patella tending baring cast), I am allowed to put some weight on my right leg and walk on it a little when using my trusty crutches in case things go horrible wrong and to still support most of my weight with. So that is what I did yesterday. There is a big difference between being on your feet a couple hours like I did yesterday and the little bit of moving around I do at home. The ends of the bone, connected to the bone cement, definitely hurt when I walk for a bit. Not cool. I had quite a bit if pain last night, some bone pain and some pain related to swelling I think. My shin felt like it was super swollen and pressure was building up inside. It feels a lot better today re bone pain (although the muscles are still pretty sore). As with the being cold thing, I am not sure what to attribute the pain to. Some of it felt similar to what I had before surgery, but it could just be a swelling thing or the "holy crap your putting weight on your leg which is pushing the raw end of the bone into the bone cement" thing. You don't have surgery in the same spot four times without some permanent issue coming up. It makes it hard to gauge what it normal or concerning given the circumstances, and having the cast on doesn't help anything because I can't see what is actually going on. I wish things with my leg didn't feel like they were in limbo, in between surgeries. Will there ever be a day when pain, a bit of redness, the odd twinge or spasm, etc. doesn't make me worry that the infection is back? I hope there is. I am tired, and I don't think I could do this again. I know, I have said that before. And the human body and mind have a tremendous ability to coop and adapt to "a new normal". Everything is relative. But I just want to get on with my life. Not to contradict what I said earlier about the beauty of ordinary life. I just want to graduate, pass my nursing certification exam, and lead a quiet simple life. One day...

As for the walking on my crutches - If I don't have anywhere to be/am not in a  rush, I will walk slowly on both the legs and my crutches. But if I need to be anywhere fast I won't walk on the leg. Hoping on my left leg is much faster.

That is it for now. There is not much to post about at the moment. A friend is coming over on Thursday to watch movies, and I heard talk of her brining brownies; I am really looking forward to that (both seeing my friend s and the brownies). And I think my aunt might come over on Wednesday. So there is some stuff to look forward to. And I am making a lot of progress on my huge cross stitch project. I will post on that once I get a bit more done. And I got a new book to read: "Secrete religions: A complete guide to hermetic, pagan, and esoteric beliefs" by Davis Barrett. It is on my list of things to read now, after I finish "A brief history of the druids" by Peter Berresford Ellis. Oh, on top of that I got some of my university textbooks on Vikings from the basement (another first today - first time in the basement since surgery). All good, simple, pleasurable things. =) Now I can sit on my nice clean comfy bed in my new cozy pajamas and slipper socks with a hot cup of tea reading a good book. Definitely comfy and cozy!

If only it were that simple

I couldn't sleep last night, so I coloured a picture. Then I added my own twist to it.
If love were enough to fix my leg, I would have a new tibia by tomorrow morning.
As it where, that is not the case. But I will continue being nice to myself (and my body) none-the-less. My leg has been through a hell of a lot, but the hardest work is still coming. Hoping it is all worth it in the end =)

Horrible Jokes

We have come to the point in the recovery of surgery number four and countdown to surgery number five that we start making horrible jokes. And when I say we I actaully mean me; my mum just rolls her eyes and groans.

Todays joke...

The best part of not having a tibia is that you can't kick me in the shin.

And cue the collective groan.

That aside, I saw both my infectious disease specialist and orthopedic surgeon today. I will update on what happened/was said in the next few days. I would say tomorrow, but I have made the mistake of saying that before and then not posted for over a year...

Appointments tomorrow

Clean! Again!
And that can only mean one thing.
I am leaving the house tomorrow to go see my doctors.
It is actually a bit of an exaggeration to say that I don't leave the house (or shower) unless I am going to the hospital. Today, for instance, I went with my mum to the car dealership to test drive a new car, and then out to get some goodies to eat (because I totally deserve junk food for sitting on my butt all day). But I didn't shower (although I did on Saturday). I just put on a hat. There. Problem solved.

And then I showered this evening again. I even used my loofah on the toes of my leg in a cast.
In all seriousness, everything takes ten times longer and loads more energy when you are on crutches/have a cast/can only put weight on one leg. Being able to do things quickly and for ourselves is something I think many of us take for granted. In many ways, this is a very sobering experience and helps us get our priorities straight. Life should not always be one big rush.

Anyways, I am getting side tracked here.
Tomorrow morning I have an appointment with my infectious disease specialist. Here is to hoping that the sample taken in surgery grew something. The surgeon took fifteen samples. I only need one to grow something. That's not asking very much, so I hope we get something out of it! That was supposed to be it for tomorrow.

But it's not.

About a week and a half ago, I saw my surgeon for my post op appointment and had the nasty heavy plaster back slab cast thing swapped for a fiberglass patella tendon bearing cast. A day later I ended up in emerge because my toes were going tingling and going numb, and all around discomfort in my leg. The doctor I saw cut one side of the cast open to allow for swelling and then wrapped the cast in ace bandages to hold it together. He told me to follow up with my surgeon before walking in the cast and to see if the cast needed to be replaced. Then commence the long weekend. I called the fracture clinic Tuesday morning, leaving a detailed message about what happened, and asking if I should come in or not. Nobody ever called me back. I tried a different number this morning, which got me through the my surgeons office instead of the fracture clinic. The receptionist was very friendly and helpful. I explained the situation but she said no message had been passed on to her. She put me on hold for a while to make some calls. When she got back, she said I can see my surgeon tomorrow at the other hospital he works at since I've already been waiting over a week since I was in emerge and Friday is still quite a way off from now. Awesome! Two bird with one stone. Erm... or two appointments with only one drive instead of having to drive up on both Tuesday and Friday. The first appointment is at 9:30 and the other is not until 1:00, but I am sure mum and I will find some way to amuse ourselves. If nothing else, I will treat her to coffee or some of that delicious hospital cake I love so much!

So tomorrow will be a good day: See infectious disease, see my surgeon, get a new cast, probably new x rays, get out of the house, and something good to eat.

Fingers crossed that all goes well!

What begins with B? Bored!

I have way too much free time on my hands.
Scratch that.
All of my time is free time.
Other than my imaginary obligation to binge watch all four seasons of Walking Dead on Netflix before season five is released in two weeks, and the occasional appointment with my surgeon or infectious disease specialist, plus the personal hygiene thing I discussed in the previous post, I got all the time in the world.
Mind you, about half that time is spent sleeping...
But still, that is a hell of a lot of free time.
And 99.9% of that is sitting on my butt. Thank god for pillows and baggy pajama pants.

To convey just exactly how much free time I have, I am going to post some pictures below. Pictures I took with my webcam. The webcam that is built into my laptop and that I have used maybe once since I got my computer almost a year ago.

Not only have I discovered the webcam (and the amazing feats it performs, like acting as a mirror when you are doing your hair and to lazy to actually get up and get to a mirror), but also all the weird effects you can add to the pictures or videos you take with it.

Here are some of the results:

Some of them are just fun. Look at that cutie to the left!

Perfect for the fall weather outside right now!

Can't wait to get back to school (hopefully in May) and and write my certification exam once I graduate. I am going to be an awesome nurse after all that I have been through.



Finally! A way I can express my frustration with my leg to the world.

But then some of them get kind of weird. I can't think of any reason why anyone would ever need some of these effects...

Struggling with my inner demons (aka to eat or not to eat more chocolate).

 I don't even...

And then I realized that you could mix certain effects together...

Anyways, now that you have seen way more pictures of me than you ever wanted to, and probably think that I am a little bit self absorbed...
Seriously though, I am bored.
Bored bored bored.

I miss school. I miss my friends. I miss being able to shower normally, make myself a cup of tea, do my own laundry. But more than anything, I miss being able to get up on my own two feet and go for a walk. I know that this is only temporary and that things will get better, but it is still dificult to deal with in the short term. Right now, six months from now doesn't seem temporary. It feels like a life time away. And given my track record with the infection, I still have doubts about whether or not this treatment option will work. I just have to stay positive. I mean, there are only so many times I can fall into the 1% of patient who have something go wrong before I am in the 99% where things go right, right? Right!

And in the meantime, I can keep messing around with the effects on my webcam and binge watching Netflix.

A girls best friends, or how to shower in twelve easy steps

Right now, this girls best friends are a garbage bag and a roll of duct tape.  And not in the weird help your best friend dispose of a body kind of way.

O.k.

That is kind of morbid. But I am serious. Duct tape and garbage bags are amazing things when your leg is stuck in a cast that can’t get wet.

My immediate concern after surgery was pain control. Then I focused on the never discussed but highly important task of getting my plumbing working again (thank you very much narcotics and immobility for introducing me to the wonderful world of suppositories… not!). And after that, once I was home, all I was concerned with was being as comfortable as possible.

But there is a point when you start to emerge from that post surgery period and start being semi-normal again, and that point requires you to focus on personal hygiene. Not that I wasn’t performing hygiene for a good two weeks or so after surgery, but sponge baths just don’t cut it. Neither does simply washing your hair in the tub with the removable shower head, as you lean forward on one good leg, trying not to tumble over the edge of the tub while also keeping your casted leg dry.

The problem with personal hygiene when you require crutches is that everything takes ten times longer than it normally would. It also takes loads of extra energy. Being on crutches + leg in a cast that can’t get wet + lack of energy + doing things that take more time and energy than normal = forget it, I can’t be bothered.  I mean it. We are talking about someone who spends almost twelve hours a day sleeping and even after that is pretty knackered throughout that day. So the act of bathing is like the highlight of my day, or week… however often I actually get to it instead of washing hair in the sink or sponge baths.

Oh! Also add the pain and discomfort of moving your injured/affected leg into the tub and the fear (not completely irrational) of slipping and hurting yourself even worse. That doesn’t help anything either.

When I was healthy, bathing was no problem. I never had to think about it. Simply grab a couple of towels and a wash cloth, get together some clean clothes, and you are good to go. Not so easy on crutches. Here is how showering usually works (at least for me) at the moment:

1)      Find someone to grab you some clean towels and wash cloths, place a shower chair/foot stool/ large cooler/or whatever it is you use to sit in the tub, and bring you a garbage bag.

2)      While awkwardly leaning over a drawer while trying to support yourself on one crutch, fish around for clean clothing. Don’t forget anything. This is important. You forget your clean panties and you might as well just give up. Way too much effort to dry off, get pants on, hobble to your room, remove said pants, then find underwear, put that on, and then get your pants back on, only to hobble back to the bathroom for the rest of clothing you left there… well, unless you don’t mind crutching around your house in your birthday suite. I wouldn’t recommend this if you live with other people

3)      Actually move all that clean clothing to the bathroom, making sure you place it close to the toilet, where you will inevitably end up sitting as you dry off and get dressed.

4)      While sitting on the toilet, lid down of course, undress yourself. You will need to sit down to remove your underwear and pants. Getting these off will require you to lift your good leg off the ground, and you don’t want to tip over or catch yourself with your bad leg, unless you don’t mind pain or re-injury.

5)      Grab your duct tape and scissors (I keep these in the bathroom) and the garbage bag your significant other/family member/roommate/etc. lovingly got you. These will keep your leg nice and dry. Don’t be stingy with the tape either. Trial and error over the years has taught me that the less tape you use, the higher the chance that your leg will get wet. Better use a bit too much and have some piece of mind than use too little and end up with a sopping wet cast. Nobody likes the smell of a wet cast. And anyways, Duct Tape isn’t that expensive. I get my rolls cheap at the Dollarama, 2$ per roll, and they come in fancy colours and patterns. You can stock up quite cheap.

6)      Transfer from the toilet to the side of the tub, and from there to the shower chair/foot stool/large cooler/whatever item you will be sitting on in the tub. Make sure you have an anti-slip matt in the tub. Mine is a rubber crocodile from IKEA. The last thing you want is to slip and hurt the other leg. I like to keep my casted leg up on a ledge at the side of the tub that is a little bit higher than whatever I am sitting on. This way, if any water does get through the duct tape, it will just collect at the base of the garbage bag and I can drain it out once I have finished my shower before I lower my leg from the ledge, thus preventing a nasty icky wet cast.

7)      Shower! Finally. The whole process of showering takes way too long to do every day, so don’t be afraid to take your time. This is where all that extra duct tape comes in – your cast will stay dry longer and the tape will provide the security that yes, you can stay in the tub for five extra minutes. I recommend a removable shower head. Makes life a lot easier. I also recommend doing everything at once – wash hair, body wash, shave, loofah, whatever it is you do to stay clean. There is no “I will use the loofah tomorrow” because chances are you won’t be showering again tomorrow.

8)      Turn off the water. Dry off as much as possible while still sitting in the tub. Dry as much of the garbage bag around your leg while you are at it.

9)      Then carefully, very very carefully, transfer from your seat to the side of the tub, then to the toilet. If necessary, get something you can’t slip on and put it on the tiled/laminate floor outside the tub so that your wet good foot doesn’t skid out from under you.

10)  Remove the garbage bag and tape from your leg, being careful not to let the water on the outside get onto the cast. Removing the tape may or may not be painful depending on how much body hair you have.

11)  Dry off and get dressed. Brush hair. Apply make-up if desired (Yeah, not if I am going right back to bed and binge watching Netflix), and any lotions you desire. I highly recommend using lotion on your hands and feet, and even under your arms where the crutches can rub from using crutches. Your under arms and hands might get calluses from the crutches, and your good foot might too from taking the grunt of your weight as you crutch along. The toes on your casted leg will get dried out as the outer layer of skin dies off and can’t be removed because you can’t shower/loofah/get that leg wet.

12)  Clean up the bathroom as much as safely possible e.g., put dirty laundry in hamper, hang up wet towels, etc. This leaves less work for your significant other/family member/roommate/etc. who probably already has to help you with everything else.

Those are the twelve steps of showering when you have your leg in a cast. Once done, you can collapse back into bed, exhausted but clean. Congratulations! Other than getting out of the house for doctors’ appointments, you have probably accomplished the biggest thing you will all week.

As time goes on, this process will take less and less time. It will become just as routine as showering when you were healthy/uninjured always was. And you will probably find ways to tweak the routine a bit, adding or taking steps out as needed. Not everything listed above is applicable to everyone. For example, some people have casts they can walk in. Depending on your situation, you might be able to stand in the shower, thus eliminating the need for said shower chair/foot stool/large cooler/etc., or you can grab your own towels and garbage bag. Whatever works best for you!

I thoroughly enjoy a good shower with piping hot water and a nice body wash. Your body has likely been through a lot since your injury and it is using a lot of energy trying to heal itself. You deserve to treat yourself and feel good, and I think that being clean helps achieve that. I almost always feel better, albeit still tired most of the time, after I have showered. Then I spend some quality time with a book or word puzzle and a nice cup of tea. It is worth the extra energy it takes to shower. You’re probably going to be tired anyways, so you might as well feel good about it.

One clean happy girl!

By the way...

... If I am going to do something, I am going to do it right! Apparently, according to my surgeon, I broke my tibia in the perfect spot. The bone infection (and now the lack of bone) is in the optimal spot for an external fixator. This is awesome news, or as awesome as needing a fixator can be.

Go me... I think!?!?

Wordiness and x-rays

If you want the good part of this post (my x-rays), feel free to skip all this wordy nonsense and scroll straight to the bottom). If you don’t mind reading the next  2 ½ pages (because I typed this out on word first so I could use spell check so I know exactly how long it really is), that’s cool too. But you don’t have to… I would probably skip to the pictures too.

Two weeks ago I was lying in a hospital bed, trying to get my pain levels under control. Last week, I was in my own bed, groggy on the pain medication I was prescribed, but happy to be home. And today I am binge watching Netflix and ankle deep in a massive cross stitch project.

Time is a funny thing. When I was in the hospital right after surgery, dealing with some of the worst pain I have ever had and eagerly awaiting the next dose of pain medication, time crawled by slowly, thick like molasses. Now that I am feeling better and up to doing more, however, I am shocked that it had already been two weeks since surgery. On the other hand, when I think of how much longer I have to wait for until I get my external fixator, time once more slows down… “Only two weeks? Feels like a life time…”

I will be happy when this is all over, when I am healthy again. When you are sick with something for so long, you kind of lose sight of the future. Everything in life becomes focused on your health, or the lack there of, with having the energy for daily activities and getting through them. The past eight months of been primarily focused on the bone infection, and the next six months, (hopefully not more if all goes well) will be as well. I want to dream after that, to have beautiful extravagant dreams and plans for a million different things I have always wanted to do.

Enough about that though.

When I was discharged from the hospital last week Monday, I was given an appointment at the fracture clinic for September 3 (last week Thursday). It wasn’t supposed to be a post op appointment since my orthopedic surgeon wouldn’t be there (on holiday on Friday, his clinic day). I was just supposed to see another surgeon who would ok me to get a new cast or back slab. I had to get blood work at another hospital first, and because there can be a long wait, mum and I were there quite early. The blood work was done super fast, so we arrived at the other hospital about 1 ½ early. That worked out really well. The later in the day you arrive (check in time, not appointment time), the longer you will probably have to wait to see the doctor. We only had to wait maybe 20 minutes before my name was called. 

When the surgeon walked in, he looked at my x-rays (which are pretty damn impressive if you ask me!) and said “This looks like something Dr. … (my surgeon) would be interested in. Let me go call him.” Although my surgeon didn’t have clinic, he was in the building, so he came down to see me! Awesome!

My surgeon spent quite a bit of time with me to go over everything. He went over what happened in surgery, and how more bone came out than anticipated and, as a result, a bone graft would not be the best option for me. Apparently it takes a lot more time to graft 6 centimeters of bone than then 4 we originally hoped for. Plus, I am too tiny to get 6 centimeters worth of bone from my pelvis, even with cadaver bone. My surgeon said he thinks my best option is to get an external fixator. He doesn’t want to use the Ilizarov fixator (or as my surgeon said “the one with all the rings”) because that would take nine months to heal. He wants to use a lengthening-progressive external fixator instead. I should only have this on my leg for 2 months. After doing some research on the wonder that is google, I figured out that this is the monolateral fixator (link to a picture found here and here).  Much better than the one with all the rings encircling your leg! I don’t know if I should be more relieved that I don’t need the bone graft or nervous about needing a fixator.

I mentioned the IV antibiotic I am (Vancomycin) to my surgeon. One of the side effects of this medication is hearing loss. Before surgery I was having some ringing in my ears. I have had this before, and it sometimes gets worse when I am really tired or stressed. I saw an ENT doctor for it years ago and he said that some people just get it and that it is completely normal. Except it got a lot worse when I got home from the hospital last week. So I mentioned it to the surgeon, who agreed it is good to stop the IV infusions because Vancomycin is known to cause ringing in ears, which could be a sign of permanent hearing loss/damage. He then called my infectious disease specialist, who decided to put me on an oral antibiotic (Septra) instead. So… my PICC line was pulled! Because of where it was, I had to lay flat for half an hour, but that was totally worth it! After 57 days, no more PICC line XD I am not thrilled about the Septra, because it causes photosensitivity, and it is finally getting cool enough to be outside, but it is much better than the PICC line. Mum and I were a bit nervous about stopping the IV antibiotics, but infectious disease told the surgeon that they were no longer needed because the infected bone was gone, and oral antibiotics are just as effective for soft tissue. It is really weird to think that the infected bone is longer in me, that my bone defect is gone. Ha! Now I just don’t have a bone…

My staples were taken out while I was lying down after the PICC line was pulled, all 27 of them. Then I had a patella tendon bearing cast out on, so when my leg hurts less I can walk on it a bit, while using my crutches of course. The incision on my leg is doing really well and hardly hurts anymore. It is about 17 centimeters long. The muscles in my leg are still really sore, but that is to be expected. I have started getting bone pain where my tibia was cut. It is a really deep throbbing unpleasant feeling. I will never get used to it.

I see my surgeon again on October 9^th, when we will start planning the next surgery and I will sign the consent forms for it. I have already started jotting down some questions I have about the external fixator. My surgeon said that he could do the second surgery now, if I really wanted, because technically the infected bone is gone and the fixator would be attached to the healthy sections of bone, far from the infected area. He recommended against this however, because we want to be really sure that the infection is gone before we make our next move. We need to let the antibiotics do their work so the surrounding tissue is infection free. He took 15 different samples during the surgery. He said he normally only takes one, but we need to get to the bottom of what caused the infection. As of Thursday’s appointment, nothing has grown. He said he had already been in contact with infectious disease, who is going work with microbiology to run some special tests. Fingers crossed they grow something! We then talked a bit about pain and ho the leg won’t feel normal until my bone is regrown. He said we could go ahead with the surgery sooner if I really get fed up with the bone pain, but I want to make it through as originally planned. I have gone through so much, and extra month or so of bone pain won’t do me in.

My cast was pretty uncomfortable on the drive home on Thursday (longer than usual because mum and I went to Lasting Toys, a speciality Lego shop, in Mississauga which added an extra 80 kilometers or so to the trip, totally worth it though!). It got a bit better after we got home, but I struggled with it all night long, constantly repositioning and unable to get comfortable. Friday my toes were really tingling and going numb at times. Mum and I spent four hours at the emergency department at the St.Catharines hospital (couldn’t get through to anyone at the hospital in Hamilton, and didn’t want to get stuck in traffic because of the Labour Day weekend). The doctor cut the one side of the cast open to give my leg some room for swelling. That made a big difference. He said to call my surgeon on Tuesday to make sure it is ok and does not have to be replaced. I called the fracture clinic yesterday morning, but no response yet. Hopefully tomorrow.

That is about it, really. I have been binge watching the Walking Dead, working on a massive cross stich project (which I will blog about another day), reading books, lots of word puzzles, colouring, and sleeping a lot. Mum and I went for a nice drive along the parkway and through Niagara-on-the-Lake this afternoon. It really cooled down today, which is wonderful after all the heat. I don’t have any plans, other than to continue working on my cross stich project. I am a bit bummed out today because it would have been the first day of third semester. But I stay positive. School will be waiting for me once I get better. I can’t wait to get back to it! The last eight months have definitely shown me that nursing is the profession for me. Everything I have gone through and still have to go through will help me to become an amazing nurse and empathize with my patients and advocate for them.  

Last thing before the good part – I see infectious disease next week Tuesday. I really really really hope she can tell me that the lab grew something. If we can target the infection with specific antibiotics we will have a better shot at getting rid of it for good. I will likely update next after that appointment.

Now for the good part. The pictures! The x-rays where taken around 8pm the day of surgery. Should get more at my next appointment to make usre everything is still ok (well, as ok as not having a tibia can be).

 

My right lower leg, one week post up. Still got some lovely brusing going on there. As anticipated, I can't really feel my my shin. A lot of the skin is numb. You can't use the same spot four times for surgery without some permanent issues. Last time around I eventually got a lot, if not quite all, of the feeling back, but I don't expect that after this surgery and and especially not after the next one. Also note the hair on ym leg. I will look like a freaking hobbit in three months time.... and perhaps the tan lines on my feet from my favorite sandels will finally go away.

View of my tibia from the front. Behold the mighty cement spacer that I can apparently walk on! (with crutches of course, and not full weight bearing. The orthopedic technician who put the cast on said I definitly need the crutches. She siad I will need them to catch myself if the cement spacer fails, and that I will deifnitly feel it if the spacer does break).

Side view. The surgeon measured the spacer. 6 centimeters! At first, it was fun to say "I have no tibia!" After all, how many people can ever say that? Not many... It is starting to get old now, though. Can't wait to start regrowing that bone!

 

 

Surgery Itself

The surgery itself went really smoothly. It only took seventy minutes, from the time they put my under to when I was wheeled into the recovery room. The surgeon was hoping to only have to remove four centimeters of my tibia. When he cut through the bone, however, he thought the ends looked a bit dodgy, so he took out a bit more on either end; six centimeters were taken out in total. My mum told all of this to me. My surgeon spoke to my mum right after surgery; he was too busy on Wednesday to see me in recovery. He said that the bone was clearly infected but the surrounding tissue and muscle looked good and infection free. The bone had not healed from the previous surgery in 2012 - the bone had failed to fill in where he had scrapped it away/drilled.

The treatment plan changes because of the amount of bone that had to be removed. Apparently there is a big difference in healing between a bone graft of four and six centimetres. The surgeon is not confident he would get enough bone from my hip to fill in the gap in my tibia, even with cadaver bone. So we are not doing a bone graft. Instead, I will be getting an external fixator. That is the one thing I dreaded the most, and now it will be happening. As my post from several days ago mentioned, I was scared of the fixator, terrified of the idea that something could be stuck to my bones, sticking through my skin, me unable to remove it if it hurt or if I psychologically couldn't handle it. After having some more time to think about it, and do a bit of research on line, I feel much better about it. I can handle it... I hope

Over all, I am happy with how surgery went. The infected section of my tibia was removed, the surrounding muscles and tissue look good, and the surgeon is pleased with the results. I couldn't ask for more. We can't say that I am infection free yet, because there might still be some little nasty cells floating around my leg. They should be killed by the antibiotics I am on. On the other hand, I technically don't have a bone infection anymore because, well, the bone is gone! How strange and surreal it is to say that. It kind of (ok, really) creeps me out, so when I look at my casted leg I like to think it is just norml and healing in there. I know that is not true, but whatever gets me through the next 3 months.  Only time will tell for sure if the infection is really gone. Here is to hoping I can finally beat this thing!

Surgery - Hospital Stay update

It is hard to believe that is has already been over a week (ten days to be exact) since surgery. I am glad to be sitting here, on the other side, looking back, because it was not a good time. The surgery itself went well, although the outcome was a bit different than what was expected. The recovery period in hospital, however, was absolutely horrible. But I will start from the beginning.

I woke up at 4:30; allowed myself to sleep in a bit longer than expected. Mum and I left for the hospital just after 5, and we made it in good time. There was already a bit of a line up at the admission desk (only one person working so early in the morning), so that took some time. Then we were sent to same-day surgery. This is where everyone is sent, regardless of whether or not they are staying the night in hospital. I got to change into a 'lovely' blue gown (that actually somewhat fit. I usually drown in those things!). Vitals were taken. Questions were asked and answers. And an IV was started.

Around 7:30 I was taken upstairs to another waiting area just outside the operating rooms. There were quite a few other people waiting for surgery. It felt like everyone came to talk to me all at once... there was actually a small lineup. Not used to being the popular girl XD There was the surgeon, two anesthesiologists, and two nurses who would be working in the OR. The surgeon came and went over what he would do one last time and asked if I had any questions. He said he would put lots of numbing stuff in my leg itself, so I wouldn't feel much after surgery. He warned me that I might wake up with an external fixator if things went badly. Instead of the regular antibiotics you get during surgery, the nurses hung vancomycin as not to mess with what I have been taking for last seven weeks. I didn't have to put on the silly blue hairnet you have to wear during surgery until I was walking to the operating room. Here I am waiting, maybe 20 minutes before surgery.

I tried to get a good look around the operating room; there is always so much to see in there, and the nursing student in me was really curious. I swear it was the same OR as last time. There were seven people, plus me, in the room. I forgot all of their names instantly, literally the second after they said them. All formalities really. Not very important to me, especially seeing how nervous I was. I had to lie down on a really small bed/table, arms stretched out and strapped down, attached to all sorts of monitors. I had to breathe into a mask, the anesthesiologist told me that he was injecting something into the IV, and before I knew it I was a sleep.

And then I was waking up, being wheeled into the recovery room and surrounded by lots of people. It took me a good ten minutes to come to my senses, and longer to realize that my leg was in a heavy plaster splint (and not a fixator!). My throat was a bit sore for a  few hours, and my mouth felt like a hay bale, but nothing like the last surgery, and I didn't loose my voice. Pain management was a huge issue. I have pretty high pain tolerance, but I was sitting at 8/10. The nurses kept giving me more IV pain meds, but nothing came close to touching the pain. I remember lying on the stretcher groaning in pain for hours. My nurse was horrible. She actually commented "We have given you all we can. You must have really low pain tolerance". And I am thinking "Ya, that's it... not the fact that I just lost a chunk of my tibia and have a piece of cement holding the ends of my leg together". I came out of surgery at 9:15. By 11:15 I was told that I couldn't have any more pain meds until at least 3 pm. My breathing started slowing down around that time. I remember laying on the stretcher thinking about how slowly I was breathing but not really caring about it. I was groggy and in pain and very sleepy. The lack of sleeping seemed insignificant. As a nursing student, I knew something wasn't right, but in that position you don't grasp the seriousness of it. Every few minutes my 02 stats would drop below 90% and the O2 monitor would alarm, which would result in a nurse yelling at me to breathe. After a while that was not working, so I was put on oxygen. I think the lowest my 02 got was 83%. I was in recovery for about 6 hours because there was a shortage of beds on ward I was supposed to be admitted to. In this time, my mum was no allowed to come see me. Neither were other people allowed to visit any of the other patients in revocery who were waiting for a bed. I heard some family members actually snuck in. Finally around 3:30 I was moved to the sixth floor. On the way up, the recovery room nurse pulled out my IV by accident... and I am a hard stick. I was unimpressed. Fortunately everything was done through my PICC line after that.

Here I am just after being moved out of recovery.

Pain control was a massive issue after this surgery. The nurses were reluctant to give me meds more because I had been given so much in the recovery room. My pain remained 8/10 over the night and into the next day. First thing Thursday morning one of mysurgeon's residents came to talk and said I was going home that day. Nope. Not going to happen. I couldn't even lift my leg out of bed. Later in the morning, PT stopped by to try to get me out of bed. I could barely sit with my leg dangling out of bed , even when supported by the physiotherapist, pictured below.

Physio came back later in the day and got me into a wheelchair for about 3 minutes, before I couldn't take the pain anymore and had to get back into bed. Come Friday I was still having lots of issues with pain control. The Percocet and Tylenol were clearly not cutting it. PT came by again at some point. They got me up and sitting in a wheelchair. They wanted me to stay there for about half an hour. Less then 10 minutes in the physiotherapist came to check on me. I must have looked as horrible as I felt, because she immediatly half asked/stated that I needed to go back to bed. It took her and to other people to help me back into bed. Just before the end of her shift, the day nurse came and told me there was a new plan in place with pain meds. I would get one med every four hours and could ask for another every two hours. I was happy to finally get the pain under control (about a 7/10 at that point). But no. The night nurse came just after seven, handed me some meds, and said "This is it, you’re not getting anything else until midnight". Needless to say, it was another rough night. Fortunately the day nurses on Saturday were much better and stuck to the new plan. I was still in considerable pain (6-7/10), but at least the pain was on the way down.

There was talk of discharge, even though I hadn't even been up on crutched yet. One of the nurses asked me if I was excited to come, to which I replied yes, not realizing they would interpret that as "She wants to go home today". Fortunately everything got sorted, and I was not discharged. My mum did a lot of talking with the nurses, I cried a bit, and it was determined that I would stay.

My IV pole.

Despite the new pain medication (dilauded every four hours, and Tylenol), pain was still an issue. Things were switched again (on Saturday I think), this time to long acting dilauded twice a day, morphine for breakthrough pain, and Tylenol for anything else. This finally did the trick.

By the time I was discharged on Monday, pain was 5/10. Not fantastic, but much better than 8/10.

This next bit might be a bit TMI, so you can skip this paragraph if you are a bit squeamish. One of the issues that patients face post-op is constipation caused by a combination of narcotics and immobility. Basically, everything just stops moving (being put to sleep for surgery makes this worse). On Friday, my nurse asked me if I had a number two. I replied no. Patients are not allowed to be sent home until everything is working as usual. On Saturday, however, they were more than willing to send me home without this (quite crucial in my opinion) function working properly. It is good I wasn't discharged because I didn't end up going until Monday afternoon. Between Friday and Monday, I had 3 suppositories, lactulose syrup three times, an entire bottle of citro-mag, and an enema. Plus stool softeners twice a day. I usually wouldn't talk about this stuff so openly, but a week in hospital and talking about bowel movements with various people kind of messes with your sense of dignity and embarrassment. The lactulose syrup is horribly sweet. My nurse on Sunday told me to chug it like a shooter. I obediently did, activating my gag reflex as it hit the back of my throat, and retching half of it onto the floor (fortunately I was smart enough to lean over the side bar on the bed). The next step (Monday morning) was the Citro-mag. My nurse said most people can't even get through a quarter bottle before they really really have to go. I drank the whole thing... and nothing. Not result. So the dreaded enema...which actually wasn't nearly as bad as I thought it would be. Don't get me wrong. I wouldn't want to have one again. But definitely not as bad I expected. Finally results! Yay! I never thought I would talk so openly about poop, but here we are.

Here is the citro-mag, and me drinking it. It has a strong lemonly taste. I didn't mind it.



Because of the confusion of whether or not I was being discharged on Saturday, my bed had already been assigned to another patient. If people are being discharged in the morning, they are moved to the physio therapy room. On Thursday, a man in the ward I was on was moved to that room because he was being discharged in a few hours, and the space was needed for someone else. He was really upset about it. I was moved to the new room on Sunday morning. I didn't mind at all though. At that point, I was sick of the other patients in the room. One woman was in lots of pain, groaning and talking in her sleep every night. One of the other women would mumble to herself "Oh god, please just stop talking. Go to bed already". I didn't mind moving rooms, even if surrounded by physio equipment. At leat is was quiet. Plus the view out the window was amazing.

The lovely new room.

The night before discharge. Exhausted but starting to feel much better. And my big bulky plaster cast. By Sunday the swelling in my leg had gone down a lot and it was obvious that the cast was too big. It felt like things were grinding around inside of it. The plan was to get a new cast on Monday, but it turned out that the fracture clinic was closed because the surgeon who works in the clinic on Mondays was away.

Jsut before discharge. Brought my own blanket from home. A little comfort in hospital goes a long way.

 

 

I struglled a lot with nausea, vomiting, and dizziness throughout this hospital stay. In the end, we narrowed it down to the pain medication I was on. The nausea continues once I was discharged and talking morphine every four hours at home. Once I stopped that, the nausea went away. I am still on the long acting dilaudid, but feel much clearer in my head. I was having some really odd dreams for a while, due to the pain medication. One was about a bunch of giant yellow monkeys all smiling and laughing at me. I am not sure if that is funny or horrifying XD

 





I was sent home with a perscription for stool softeners, lactulose syrup, morphine, and long acting diluadid. I was given an appionemnt for last Thurday to see a orthopedic surgeon (couldn't go this Friday because my surgeron was off for the long weekend), and told to make an appointment with my own surgeon for the 9th for my post op appointment, and to call infectious disease to make an appointment for 2-3 weeks from then.

The ride home was a bit bumpy, but not too bad. Mum and I took the senic route to avoid rush hour.

Home, trying not to throw up into my lovely blue bowl.

Sicne surgery, there has been a lot os sleeping and watching tv or movies. Just comfortably relaxing. Everyday I feel better and my leg hurts less.

 

I will update on the appointment with the orthopedic surgeron later. Lots to write about that.