Another Update

I had more problems with a high heart rate just before midnight last night, around the 130s. My nurse took lots of blood to culture and did an ECG. The ECG showed that I have tachycardia but my heart rhythm is normal. So that is both good and bad. I was able to sleep almost constantly through the night. It was not the deep sleep I wanted (or needed) but much better than the cat naps I had been having since surgery.

I had another episode with high heart rate early this morning, around quarter to seven. I was coming back from the washroom when I started shaking really badly. I am not sure, but I think my heart rate got back up to the 150s. At rest I am now between 110-130. This makes me feel antsy and makes it difficult sleep or relax. This really sucks because I have gotten so little sleep since surgery. I have not heard back from the doctors about this yet other than "All of your lab work is normal; we do not know what is causing this". My nurse has been trying to get in touch with the ortho team for several hours without success.

A new problem I have encountered is that my tongue has turned white and is super painful. This is really unpleasant. The only bright side is that I don't have much of an appetite at the moment anyways, so I am not sitting here super hungry but unable to eat because my tongue is so sore. I will tell my nurse the next time see checks on me.

I definitely won't be going home today. I also have not worked with physio today, so that will push things back a bit. Hopefully tomorrow I can start working with my trusty crutches, but I don't think I will be home until Wednesday. Hoping for Tuesday (tomorrow) but realisitically thinking Wednesday. I have a post op appointment with my surgeon here at the hospital early Thursday morning. Depending on if/when I am discharged on Wednesday, I might ask if I can stay an extra night in order to save me the pain and discomfort of the hour long drive between home and the hospital. That is a trip I am not excited to take what with the external fixator...

I am still in good spirits, just trying to relax and occasionaly do some soduku puzzles. My mum is sitting beside the hospital bed knitting me a lovely scarf, and later we might head downstairs to get some tea. I think that is it for now. Hopefully everyone else is doing well =)

Ps. I have an epic bruise on the outer thigh where the surgeon had the tourniquet during surgery. I don't think i have ever had such a large bruise before.

Edit: 6:17pm. The doctors are not concerned with my heeart rate, even though the nurses are. They are ready to discharge me tomorrow as long as physio gives the okay. We have figured out that my heart rate spikes when I get up and move around. I took a short walk in the hall earlier and my heart rate jumped to 170. It was back to 130 within seconds of sitting down. And about fifteen minutes ago it jumped to 160 when I went to the washroom. I told one of the nurses and she immediately said that this is an activity related problem. But the doctors are ademant that everything is okay becuase a young, healthy person is, in their words, able to withsand a heart rate of 170. So I will go home tomorrow and if anything happens we will just drive back to the ER. I am dissapointed in how this system works. The one doctor who did want to run more tests and ask more questions was quickly put down by one of her collegues. Sometimes, the system doesn't make any sense to me...

Update

Hello everyone!
This is Jedida and a tiny update on how things are going post-surgery. Please excuse any typos; I am typing this in a lovely narctoic induced state.

Pain wise things are going well. As of this morning I am completely off the pain pump and relying solely on oral narcotics. Mostly my pain is a three or four out of ten, but it spikes when I move around. I can ask for more pain meds whenever necessary.

I am adjusting surprsingly well to the external fixator. I was afriad I would be in tears and begging for it to come off, but I am actually quite okay with it and make some cringe worthy jokes about it. This is probably a coping mechanism, but I'm cool with that if it helps me get through the next four months.

I have been working with physiotherapy since Thursday, slowly increasing what I do each day. Tomorrow I am hoping to switch from my little old granny walker to my trasty crutches. I don't think we will be doing the stairs tomorrow though, which I have to master before I am allowed to go home. Cruthes and a external fixator are a different story than crutches and a cast.  I am therefore hoping to be home as early as Tuesday, but can't say that with 100% certaintiy.

I have also been having some problems with high temperature and heart rate. As of half and hour ago my temperature was 38.2 (slight fever) and my heart rate was 130 (normal is 60-100). My heart rate was as high as 155 a few days ago... scary stuff. The nurses are going to keep a close eye on my vitals tonight; I don't think the day staff took them once today... I was also just told that the doctor's want two more days of blood work to make sure I am doing well, so I defeintily won't be home until late Tuesday at the earliest.

I am keeping good spirits, enjoying talking with my "roomate", and simply snoozing through the day. I couldn't do this without my mum, who was fantastic for writing an update for my blog. Love you mum!

That's it for now, as I am pretty knackered. I hope everyone elese is doing well =)

Ps. for anyone who is interested, I have a Stryker Hoffmann fixator and it is a lovely metaliz blue colour.

Post-surgery update

Those of you who have read Jedida's most recent posts know that she was preparing for her long awaited surgery on Wednesday.

On Jedida's behalf I can let you know that surgery went well. It took 2 hours and 10 minutes, which pleased the surgeon because, in his own words, 'that meant that there were no obstacles'.

Since then she has come across a few hurdles with pain medication (a big mistake in the prescription left her severely undermedicated immediately after surgery), 3 periods of way too high heart rate/low oxygen levels/increased temperature which has brought the mobile ICU team to her room, and the need for potassium and other electrolytes to replenish her depleted levels.

On her right shin sits a trippy electric-blue fixator with all kinds of interesting screws and turning devices. Jedida will put a picture up once she can focus enough to read/type again. The meds make her that loopy. Initially she was on 2 x 3mg of contin but had to use the pain pump to the max. So the contin was trippled and now the pain pump is needed less.

On Thursday she was able to sit in and move around with a wheel chair, and on Friday she used a walker to go to the bathroom. Today she used that walker to hop all the way out of her room and back, 3 times now, and she wants to try to do it once again tonight.

We hope that she will be allowed to come home on Monday but know that it may be a few days later.

Thank you all for your interest and encouragements.

Mom

The morning of

Here I am, 5:30 in the morning. My mum has just told me she wished we didn't have to go and that she doesn't want to do this. I couldn't agree more, but it will be worth it when I can walk and carry that cup of tea!

I slept horribly. Blame it on nerves and getting hungry. I can never well sleep when I am either. I guess the anesthetic will remedy that and I will sleep the rest of the day away. I am rambling now, as I usually do when super worried. Hopefully everyone has a fantastic day! Mine will be, in that it will be the start of the process growing back my tibia, and that is a beautiful thing even if it means some pain. Cheers!

The night before

In less than nine hours I will lying in the operating room with a mask over my face, being told to take deep breathes as I am put to sleep. I have been there enough times that it has become commonplace. I know exactly what will happen and what is expected of me. The difference between this surgery and all the previous ones is that instead of leaving with one long incision running the length of my lower leg, I will have multiple incisions. I always took it for granted that I would only have one neat, tidy scar. Unless I was dealing with infection related symptoms, I hardly gave my scar a second glance. Quite frankly, it never bothered me the way that I knew scars bothered some of my friends. I just took it at face value and accepted it. Even if the scar did bother me, there is nothing I could have done about it anyways. But this surgery is different: I will not only be walking away (not literally of course) with the scar running down my shin, but also one across my knee, two smaller ones where the screws that hold the intramedullary rode are put in place, and eventually the scars left by the pin sites of the external fixator. My leg will look a whole lot different than it does now. Until this evening, I had never thought about it. I knew that I would be getting multiple incisions but didn't comprehend that they would result in scars. And while my trusty old scar on my shin has never bothered me before, I don't think I will feel the same way once all my incisions heal up and leave their mark. I'm not so much angry about this as I am sad. A scar like my current one is not that rare. Lots of people break a leg and require surgery. But after this surgery my leg will be a road map, a horrible reminder of something big and horrible, and that makes me sad. Maybe it is weird, but I took some pictures of my leg the way it is right now to remember it...

Today was a good day. No more waiting, passing the time. Tomorrow is the big day. I am packed and ready to go. I went to the magazine store in the afternoon to get some cross stitching goodies that will keep my occupied after surgery, and set up my Playmobil Christmas market in the evening.

The kitchen table

Bookshelf in my room

And that is it really. Time for bed. 5 am comes to early, but I am ready to go.

Hopping around the Christmas tree

Mum and I drove to the Ikea store in Burlington yesterday afternoon to get our Christmas tree. We usually wait until the start of December to do this, but what with the ex fix surgery coming up on Wednesday we decided to do it early this year. That way I can take part in the holiday festivities a bit before I enter my narcotic induced haze and we don' t have to worry about it once I am discharged from the hospital.

The plan was to go to Dundurn Castle, which has been decorated for the holidays, first. When we drove past we saw it was crazy busy, with a long line out the door! We decided it wasn't worth standing in line for. I have adapted to my crutches quite well, but standing in one spot for a prolonged period of time is still a challenge. For some perspective, try standing on one foot in the same spot for twenty minutes. Pretty hard to do, right? Plus, I have started having some issues with numbness in my right hand fingers as a result of using the crutches (at least four more months to go...). While the numbness does go away once I sit down, we don't want this to become a permanent issue. So standing in line for an hour plus is not a good use of my time on crutches.

Mum suggested we go to Ikea right away to get our tree, but I had other plans in mind. I drove almost an hour to see a museum and gosh darn it I was going to see a one! During the winter semester I lived in downtown Hamilton near a historic house, Whitehern. I walked past the building every morning to get to my bus stop and always intended to visit but never got to it (nursing school being crazy busy and all). I suggested we go there instead to my mum. Brilliant idea! The please was completely empty. For most of the tour, we were the only visitors there. As a result, the tour guide was able to go into detail about everything and mum and I could ask whatever questions we had. Like Dundurn Castle, it was decorated for Christmas as well. Such a treat!

If anyone is interested, here is the link to this historic site's website.

This evening I decorated the tree. Mum set it up and put tinsel and lights in it last night. Obviously I couldn't really help with this because of the crutches. But I could still hang ornaments as long as I didn't try to reach the branches at the top of the tree because that would result in me knocking both myself and the tree with all those lovely glass ornaments over. So my brother and I hung out a bit in the living room while I decorated the tree. The crutches got in the way too much so I just hopped around on one foot. Man! Tree decorating on one foot should be an olympic sport. There are some serious balance issues involved there!

Every year at least on of us ends up hitting our head off the lamp. This years count so far: Mum - 2, me - 1, brother - 0. 

In addition to the little tree I set up in my room earlier this month, I got a second one to go on the desk beside my bed. I decorated it in tiny paper matryoshka dolls.

In addition to all the decorations, we have been endulging in a box of clementines and today it got considerably colder and snowed! And not tiny insignificant specks of snow either, but big fluffy flacks of it. Now it looks, feels, and smells like Christmas. I am loving it and soaking up every minute before surgery and the external fixator. On that note, I am ready for surgery. I picked up my prescription for antibiotics from the pharmacy today, bought some toiletries for while I am in the hospital, and pulled out some old bedding to use so the fixator doesn't ruin my nice devout cover. All that is left to do now is wait.

"Oh, you got away without a cast!" Rant

With surgery coming up in a few days, I have been trying to tie up some loose ends. I know that I will be in a lot of pain the first week or so after I get my external fixator, so getting out of the house won't really be an option. Correction. It won't even be on my mind. Even after the initial shock and pain subside, however, I will still be dealing with a good amount of pain and discomfort. Then add the logistics of moving around, getting down the stairs and maneuvering myself into a car with what can only be described as scaffolding holding my leg together. Even if I wanted to, which I am pretty sure I won't, it will be pretty darn hard to go anywhere. So everything I have planned for Christmas/the holiday season has to be done before Wednesday morning. Other than getting some new padding for my crutches, buying one more Christmas gift, and posting some Christmas cards, I've pretty much gotten everything done.

I did, however, have one last errand to run at the dollar store. It's meant to be a surprise, so I left my mum in the car to brave the store on my own. This is quite a challenge since I was looking for a basket full's worth of stuff and there is no way I can hold a shopping basket, or a shopping basket's worth of stuff, while my hands are otherwise occupied with my crutches. Anyways, I manged just fine and all's well that ends well. It is amazing how quickly one can adapt to life on crutches. Not to toot my own horn, but I am pretty darned impressed with how I can mange most tasks as well as able-bodied people.

So shopping on my own is not such huge problem. I am impressed with how nimble I have become with the crutches and now view them more as an extension of myself than a mobility aid. Where I once was stiff and clumsy while using them, I am not quite nimble, twisting and turning and using them to my advantage. I am prepared for surgery next week. I have come to terms with my situation, and am general am coping well. There are sometimes moments of near bursting into tears and the last week has been exceptionally hard with the rising stress and tension of the external fixator looming ahead, but the majority of the time I am doing remarkably well given the circumstances.

There are moments though that are noticeably more difficult than others. While braving the dollar store with my trusty sticks, a woman walked by, eyed me up and down, and asked me what happened to my leg. I switch up my answers depending on the situation and how I am feeling. Earlier in the day, for example, I told a gentleman at a craft show that I was attacked by beavers. We had a good laugh and I was able to avoid trying to explain what actually happened. For some unknown reason, I told the woman in the store what actually happened. I don't know if she just couldn't grasp what I said (a lot of people can't) or purposefully choose to ignore my answer, but she went on to say that she spent three months on crutches a while back. And I am standing there trying to smile and be polite while the cogs in my brain start whirring, "Really? Only three months? I've already been on them for three with at least four more to come, plus all the time over the past decade I spent dealing with the bone infection...." These are the things I thought, but I simply smiled and nodded my head. As the woman turned to walk down the aisle she cheerfully commented "At least you avoided getting a cast!" What!?!?! I had dead bone in my leg, I had infected bone in my leg, now I am dealing with a lack of bone in my leg! How can you not comprehend how serious that is! I am missing bone! I don't often glare at people, but boy did I glare at her. I wanted to convey the hurt and frustration, the fear and uncertainty, ten years worth of broken leg and infection related nonsense. I desperately wanted her to understand what I am going through. Yes, I do not have a cast on my leg right now, but is that worth anything compared to everything else I have been through? She obviously noticed my glare and quickly scuttled off. I don't normally glare at people. I make it a habit not too. But the last year of tiredness and fatigue and pain have worn me down. Add to that the mounting stress of next week's surgery and... well, and I start to glare at people. I don't care that you broke your leg once or that you sprained an ankle or spent a few weeks on crutches. I don't care that you recovered without any complications. I don't care that you are curious about why I am on crutches. And I definitely don't care that you think it is nice that my leg is not in a cast. All I want it so go about my business, get my shopping done, and go home so that I can sit down and drink a nice cup off tea because my fingers have gone numb from being out on my crutches for several hours.

There, rant done. I feel a lot better.
The cashier at the store was absolutely lovely. My mum and I had a lovely day at the Book Outlet and a Christmas craft show, I am going to my father's for dinner tonight, and tomorrow I am going with mum to Dundurn castle and to get a Christmas tree. Fun, good things. I just needed to vent a bit about the stupid comments keep getting.

Long time no blog

I haven't posted in over a week. I wish there was something to blog about, but my days are all pretty much the same. From the moment I wake up and realize that I still need my crutches, followed by endless hours of sitting on my butt, to the time I go to bed, nothing really significant happens. I have been using my time to work on my cross stitch blanket (I promise I will post about that soon), purge my book case and binge watch all the Walking Dead episodes for what must be the fifth or sixth time since the last surgery.

Yesterday morning I had a rather disappointing appointment with infectious disease. Medically speaking things are going well, but the appointment was not what mum and I were hoping for. What with the ex fix surgery coming up next week we were hoping for some advice on things and a bit of reassurance. Instead we got a medical student who, in her own words, has never had a patient with an external fixator before. It was also clear that she had not read my medical file as she had no clue I had surgery to remove 2.5 inches of my tibia or that I am having surgery next week or that I have been dealing with this for almost a decade. So not only did she have no clue why I was there or what my medical history was but even if she wanted to she couldn't have helped me because she has absolutely no experience with external fixators. None, zilch, zero, a bit fat 0. I was not impressed. Eventually my actual doctor was pulled into the conversation, but at that point I was pretty unhappy. I have another appointment with infectious disease in about seven weeks and I am hoping the student doctor will no longer be there. On a bright note, mum and I stopped at Ikea to eat on the way home, which was pretty fun, and then we took the scenic route along the Niagara Escarpment home.

Today I slept late (I do most days). I have a stuffy nose and scratchy throat. Serves me right for going out in public! Totally worth it though. Late afternoon mum and I drove to Niagara on the Lake and along the Parkway before going to an antique shop and the book store. Because the one thing you need to do after your purge your bookcase is to buy more books...

This weekend looks promising. Mum and I are trying to make the last few days before surgery special. God only knows the months following won't be fun at all. On Saturday we are going to a Christmas craft show, Sunday should be a trip to Dundurn Castle, and then getting out Christmas tree on Monday and decorating it on Tuesday. I am also hoping to have a friend over in the next few days.

And then Wednesday... it will be here before I know it. I am scared and nervous and have no clue what to expect with the external fixator. I do know that what awaits includes a lots of pain and narcotics. Tensions are running high in this house and it is clear everyone is anxious and feeling on edge. Quite honestly, there are moments when I just feel like bursting into tears. I know that it will be worth it in the end and that I will get through this. Life goes on even if things are unpleasant. This too shall pass. But it is hard none the less. I guess that is what being brave is - doing the things we have to even though they are hard or scare us. One day I will look back and be glad I did it. As my mum says, "It's not like you can stay on crutches forever". I can't wait for the day I can walk again, and I just have to keep reminding myself of that.

Loneliness, isolation, social life, self-worth and chronic conditions

“You’re lonely,” whispers the little voice at the back of my mind.

“Nope,” I calmly respond. We have been here before, my thoughts and I; I know how to respond and make these feelings go away.

“Yes, you are,” says the voice, a little stronger, growing louder.

“Never. Not me. I’m always alone; I’m used to it.” My words are calm and collected, but a hint of panic is growing inside me. Yes, I am almost always alone, but am I really used to it? The voice has planted a seed of doubt within me.

“Just admit it. You miss your friends. You miss school. You miss the ability to go out and meet people whenever you like. Now you sit at home all day, confined to your room, missing out while everyone else gets on with their lives.” The voice is persistent today.

“None of that matters,” I yell, shocked how loud my words are, how I no longer feel calm and collected. “I have a whole room full of beautiful things to keep me busy: books, puzzles, colouring projects, music. I don’t need anything else. I am happy on my own.”

“No, you’re not,” hollers the voice. “You’re lying to yourself. Lying, lying, lying!”

“I am not!” I scream back, louder than ever before, no longer in control. “I’m perfectly fine on my own.” I am desperately trying to convince myself and to drown out that little voice, but I know that I’m not fine. The voice is right, I am lying. All the nice things in the world couldn’t make up for the isolation I feel.

“You are lonely,” repeats the voice, coolly, matter of fact, knowing that it is winning today. It knows that the last months spent alone have worn me down, and the coming months will make it worse.  

“No, I’m not…” I quietly say with a tremor in my voice. I want to believe I am okay on my own, that I don’t need other people in my life to feel fulfilled and happy and that I can keep myself company. But none of that is true. At the end of the day, we all need friends and contact with other people. So I give in and think, “Yes. Yes, I am lonely.”

A chronic medical condition not only affects a person’s health, but also has far reaching consequences regarding that person’s personal and social life. While people may be aware of the physical effects a chronic illness may have on a person, they are often unaware of the isolation and loneliness a person may experience as a result of that condition.

It is amazing how quickly my friends forgot about me once I went on leave from school and moved back home in order to fight the chronic bone infection that had re-established itself so sneakily and was wreaking havoc on my health. People didn’t want to know the details of my diagnosis; they got sick of hearing how I was actually feeling because it was always the same “I am exhausted and feel horrible” so they stopped asking; no one came to visit in the hospital; there were no get well soon cards; no phone calls or emails with encouraging word or offers to help out if needed; no one came to visit me at home after surgery; people stopped responding to my text messages. It was as if I didn’t exist anymore. I had simply vanished. No, more than vanished. It was like I had never been there to begin with.

I am sitting here now, thinking “God, I still have months and months of treatment and uncertainty to go. How will I ever get through it alone? I am so lonely”. I am extremely fortunate that I was able to move back home with my mum for the duration of this medical saga and that my mum and I get along really well. I could not get through this without her kindness and support. At the end of the day, however, everyone needs friends, especially ones their own age, the ability to get out of the house on their own, to socialise and meet new people. As I have discovered over the years, these are all things that become challenging or even impossible given a chronic medical condition.

So I am not only lonely because my friends forgot about me but also because of my own physical inability to get out of the house (or actually go places if I manage to make it down the stairs and out the front door). Sometimes something as simple as leaving home and being out in a crowd or people watching is enough to ease a sense of loneliness and isolation.

As I sit typing here, two months from the previous surgery and a mere fourteen days before the next one, I can’t help but think of the other ways that a chronic medical condition can cause a person to feel lonely. What comes to mind is the lack of understanding and empathy that many people seem to have. Today, for example, my mum went to a meeting. While there, people asked her how I was doing. In particular, one person asked her where I was living at this time. She was shocked when my mum said I was living at home because I am unable to work or attend school given the circumstances. She responded as if I was somehow failing as an adult for being a twenty-three year old who had to move back home. Forget that this twenty-three year old can’t even walk and will be getting a metal frame screwed through her leg like a giant Meccano set to regrow her shin bone, she should be able to support herself and be independent no matter what! Despite what my mum has told other people about my health, people are clueless. They hear the words “missing 2.5 inches of bone” and say ohhh and ahhh in response, but they don’t bother to think what that actually means. Unlike a sprained ankle or broken leg, there is no script or social convention about missing tibias for people to follow. And because people don’t bother to think what it actually means to lose the ability to stand on their own two legs, they don’t have any empathy or compassion, no kindness to spare. As a result, I feel alone. It feels like no one else knows what I am going through. There is no one else to relate too, only a sea of glowering, disapproving faces.

That sea of glowering faces brings me to my final point – chronic medical conditions affect my ability to contribute to society and to do the things society tells me that I should be doing given my age and previous accomplishments. Consequently, misgivings about my self-worth and usefulness have arisen. I find myself looking in at the world thinking “I should be part of that, but I am not… what it wrong with me? How can I be worth something if I can’t be part of it?” Many young adults already struggle with these feelings given the realities of the job market and the problems facing the world. There are so many questions – is getting an undergraduate degree worthwhile or should I go to college instead? Will completing a master’s degree increase my job prospects or is it an unnecessary financial strain? How can I justify accepting any job that comes my way regardless of my education? Is now a good time to have children or buy a house? How can I justify this expense given my minimum wage job? Is it acceptable to indulge a little given all the problems and poverty in the world? Etc. – that young people think about when they consider their prospects and their self-worth. These questions are amplified when one is unable to take part in what is socially expected – volunteer work, jobs, school, socialising, marriage, raising children. It makes sense that people with chronic conditions feel lonely as life passes by without them. It also makes sense that they feel lonely and isolated when they think of all the ways they cannot take part despite the desire to do so and then consider their self-worth in lieu of sitting on the side lines.

The world keeps moving as I sit watching from the window. Occasionally someone might peer in for a moment or two, but at the end of the day, I am shut inside alone while the people on the pavement can mingle as they choose. Almost a decade’s worth of bone infection followed up by losing a chunk of my shin bone have more than familiarized myself with the world of loneliness and isolation.

To sum up this blog post, even if people are unaware of it, chronic medical conditions often result in more than physical symptoms or a few weeks or months off from work. The reality is that they cause isolation and loneliness in a number of ways:

• When people are diagnosed with chronic conditions, they are often forgotten or overlooked (even if unintentionally) by the people around them, which results in loneliness.

• People who struggle with chronic conditions, pain, or physical immobility often become isolated because they are physically incapable of leaving the house alone to mingle with the rest of the community. Something as simple as showering or making it down the stairs may be such a hassle or strain on energy that it is hard for people to justify getting out of the house for a few hours. As a result, people miss out on parties, social engagements, trips, a cup of coffee down the street at a café, and any other socializing that occurs outside the home.

• A lack of compassion, understating, and empathy make it difficult for people with chronic conditions to have meaningful interacting with others. Without understanding there can be no empathy and without empathy there is not drive to understand. Without either, the world is full of a lot of judgement and know-it-alls ready to meddle and tell you why you are dealing with your health in the wrong way or how you could have prevented your condition if you had only done something differently. The world is a lonely place without kindness and support.

• Being unable to partake in activities or too achieve milestones like those around you are doing makes it easy for people to feel like they are not part of the society. Nothing says isolation like watching your former friends who have forgotten you since your diagnosis because they lacked empathy and understanding buy a house, get married, and have children while you question your self-worth as your struggle with the apparently not so simple task of getting out of bed. When you feel worthless, it is easy to justify staying inside or ignoring what few phone calls or visitors you get, therefore perpetuating the cycle of loneliness even further.

So loneliness and isolation play a tremendous part in the life of someone with a chronic medical condition. I am struggling with that isolation and loneliness right now. I miss having my classmates, being independent, the ability to pop down to the store to buy a loaf of bread, bumping into a friend in the process. I miss feeling like I am getting somewhere in life, completing my college education, writing my certification exam, becoming a nurse. I feel like I am outside of things. Life is moving on without me. Loneliness and isolation are more than just feelings; they are things I am experiencing right now.

The take away, like that of several of my other posts has been, is kindness. Be kind and compassionate, have empathy and try to understand what other people are going through. A moment of kindness on your part by picking up the phone, writing an email, popping by for a cup of tea and scones, can be the small thing it takes to ease someone’s loneliness. Chronic medical conditions are, unquestioningly, the cause of loneliness (it is inevitable that such an experience won’t have an influence) b that is not all they have to cause. They can also cause moments of great warmth and true friendship.

P.S. I am fortunate to have two friends who do keep in contact with me, one from way back when in high school and another from university. Their company and contact is invaluable and make difficult days a little bit brighter.

You saw what?

Mum, a friend of hers and I ventured out to the Toronto Zoo last week Tuesday. If anyone has ever been to the Toronto Zoo before, they know that this is a huge accomplishment when you can't walk. And when I say huge, I mean humongous. This zoo, which is nestled into the ravine system surrounding the city, is more of a natural park than anything else. The map of the zoo is divided into different area. Each area has a trail leading through it and is given an estimate for how much time it will take visitors to walk through it. If you add all the trails together, you are looking at a solid 6 hours of walking. And that, my friends, is a lot of time to walk when you can't walk at all.

Between the wheelchair, my mum's amazing upper arm strength and pushing abilities (along with her perseverance to get me through as much of the zoo as possible), and my trusty crutches, we managed to see almost everything. We only avoided the "Canadian Domain" because that was an extra hour of walking (well, rolling for me) with a steep hill thrown in for fun. We usually avoid this anyways because we normally go to the zoo in the summer when the prospect of a hill under the sweltering sun is completely out of the question. Plus, we already live in Canada; over the years we have seen a lot of the animals that are on display in nature.

So we went to the zoo, and by altering between the wheelchair and using my trusty crutches, we made it through almost the entire park. It was good to go in the fall, because crutching around is hard sweaty work. My abs got the work out of a lifetime. We were all pretty tired (and sore) the next day, but it was completely worth it.

If you are considering going to the zoo, I definitely recommend going in the fall. There are several benefits to going late in the season: The admission fee costs less (because there are less animals on display, although we didn't notice that much of a difference compared to when we were there in the summer); it is cooler, so walking around all day is not as exhausting; there are less people around so it is easier to get a good view of the animals, especially when they are being fed or a zoo employee is giving a talk on a specific animal (less people also made the trip more relaxing); many animals seem to be more active in the cooler weather; and you can enjoy the lovely fall weather and foliage!

Below are some pictures of the day (mum's friend took them, not me).

We saw....

Some walking barcodes

 The real culprit behind deforestation...

 A large animated rock.

 And Canadians in their natural habitat!

On of my favorite animals was the red panda (by far more active and much cuter than the giant pandas on display).

Oh! And I got to ride an elephant XD

One last note about the admission cost: because I was in a wheelchair, I got into the zoo for free and my mum (seen as the caregiver) got in for half price. The zoo does this to encourage people with disabilities to come to the zoo. I think that this is a fantastic idea. The extra cost of having a caregiver accompany you can deter some people from visiting the zoo. Also, despite all the accessible washrooms and ramps, a trip to the zoo while in a wheelchair is a pretty daunting challenge. As I mentioned, it takes about six hours to get through the entire zoo; this is quite difficult in a wheelchair. Wheeling yourself around in a wheelchair is tiring, half the ramps are too steep to get yourself up (or leave you feeling like a run away go cart on the way down; don't even get me started on the hills!), and not all of the doors can open with an automated button. And there were definitely some areas I avoided because of the wheel chair or only managed to get to because of the crutches. Realistically, I wouldn't have been able to manage the day on my own. So kudos to the zoo for this awesome initiative!

Tis the season

There is a rule in my family that we don't put up any Christmas decorations until the start of December. This rule exists for an obvious reason - every year it seems like the stores get their Christmas stuff out earlier and earlier. I think things finally reached a new level of insanity last year when I saw stockings on sale at the Dollarama in the middle of the summer. Fortunately, things haven't been that bad this year (although I did see wooden ornaments at Micheal's at the start of August. I let this slide because these were ornaments that you had to decorate yourself, and being pretty crafty myself, I know that things can take months to plan and even longer to actually create. But still... it is pretty damn early).

Things are different this year. What with the ex fix surgery coming up at the end of November and buckets of pain and a narcotic induced haze awaiting me for all of the holiday season and beyond, I know that I probably won't get to enjoy Christmas very much this year. So today I broke the family rule and put up my little tree and hung up a few ornaments around my room. Nothing crazy or excessive; just a little bit to get me in the holiday mood and allow me to enjoy the season.

My tree!

We will also be getting out Christmas tree before surgery. We are hoping Ikea has them on sale by the 23rd, which will allow us to decorate it on the 24th, the day before surgery. You can never go wrong with an Ikea Christmas tree. They only cost 20$ and last well into the new year until the christmas tree colelction date set by the landfill.

Last year I bought some lovely chalkboard tags. I had no clue what to do with them, but they were super cute (and the price was right). They have been sitting in a box with the Christmas decorations under my bed for months on end. Every so often I got them out and tried to figure out what to do with them. Inspiration never struck, until today! Nothing says keeping your spirits up like some word puns and twisted humor.

Other than decorating a bit and coming up with horrible tibia related puns, there has not been much going on lately. I have been playing around with my blog a bit and experimenting with some html codes. Today, for instance, I learned how to make a blog button! I am probably way more excited about this than I should be, but given how much time I have on my hands and how little I have to fill it because being dependent on crutches severely limits one's activities, this is a pretty big thing. Maybe even the highlight of me week.

Seriously though, I am not a computer person, and my experience with html in high school wasn't exactly stellar to begin with. So figuring out how out how to add a button to my blog is pretty exciting for me. My next goal is to make my own banner/title for my blog. This might take a while, so don't expect to see anything soon.

Tomorrow afternoon  I have my pre-op appointment in Hamilton. That will easily eat up three hours in the afternoon, plus the almost hour long car ride to the hospital (and hour long drive back home). I am looking forward to the cake severed in the hospital cafeteria; I have a thing for hospital cake... don't judge. That appointment is followed by a relaxing cross stitch filled weekend, hopefully a trip to Dundrun Castle with mum next week (because they should have their Christmas decorations up and I am enjoying the holiday build up while I can), and an appointment with infectious disease on the 17th, before surgery itself on the 25th (gulp).

I just have to keep reminding myself that everything is okay. Regardless of what happens and how things go, things will be alright and I can still be happy. And in the meantime, I can keep stitching and making horrible jokes.

How did I get here?

Ten weeks out from the last surgery, three more to go until the next one, followed by four months with the external fixator just to get to yet another surgery. More hospital stays; more incisions, pain, and scars. Then what?

Where will I be in six months? Will I be able to walk again? Will I have a tibia to stand on? Will I be paying tuition, renting an apartment, moving out, returning to normal? Or will I still be battling head on with the aftermath of almost a decade’s worth of bone infection?

I talk about getting back to normal, but what does normal even mean at this point? I think about getting better and being just like everybody else. It is something I want so badly, desperately. It seems so close, I could reach out and grab it, hold on for dear life, yet it also seems worlds away. All this nonsense that started with a simple broken leg… it is a cruel joke the universe devised. And the universe is laughing at me. I am bobbing in the ocean reaching out for a life buoy, but every time my fingertips touch it a wave pushes it farther away.  

Life the way it is right now has become normal. My doctor’s speak to me in their medical jargon and instead of hearing a bunch of mumbo jumbo, their words actually make sense. I hear the phrase “You need to have more surgery” and I am used to it. The words are too familiar; I know what will happen and what is expected of me. My time is measured in doctor’s appointments instead of weekends and parties or days until fill in fun event of your choice. I know that there is no quick fix for me and that the term “wait and see” governs my life. I have lost many friends throughout this journey, but patience is the one true companion. No matter what medical news I get or whatever emotions I am dealing with, the bottom line is always the same: “Wait and see. Be patient”.

This is my normal. I resent it, but it is all I know. I can’t stress that enough. The bone infection has plagued me since I was thirteen. I am twenty-three now. That is almost ten years filled with doctor’s appointments, pain, antibiotics, and scans; taking time off from middle school, high school, university, and now college. It is all I know. But I feel so robbed. How can I feel robbed of something I never had? I see the few friends I have left living their lives. They are in committed relationships, dating, working, doing fun things, planning vacations, getting married, buying houses. What am I doing? Sitting on my couch, colouring pictures, reading books, cross stitching, playing computer games. School is on hold, there are no boyfriends to hang out with or parties to go to, no job, no living on my own, no independence. I see everyone around me getting on with their lives while my life is on hold, again. I am doing what I have done too many times before – fighting to be healthy. And that fight comes at a tremendous cost. I know that it will be worth it one day, but right now it is a hard pill to swallow.

This normal has become so normal that I don’t know what else to expect. As Margaret Atwood said: “Whatever is going on is a usual”. I know it is not as things should be, but it is what it is and I am resigned to it. That is a very passive thing to so. But chronic health issues are very passive things. You can fight them as much as you want, but at the end of the day you don’t make the rules, and you can’t change them. You have to learn to live with your health issues, and that means accepting them as your normal.

When people ask me about my health, they often say “At least you will be better in x number of months, there is light at the end of the tunnel”, once I have explained what my doctors have planned for me. It is difficult for people to grasp the concept of chronic illness and ongoing medical problems, especially if they have never been affected by these things themselves. Even my fellow classmates who are studying to become nurses seemed to struggle with these concepts. It is even more difficult for people to deal with things, like the chronic health issues of a young adult, that could bring their own mortality into question. Regarding health, if it can happen to you, it can happen to me, right? And if it can happen to a young person, it can definitely happen to an adult. So it makes sense that people minimize my problems when I tell them how I am doing. It is easy to look at my bone infection in terms of short bouts of illness between long stretches of good health. It is easy to consider PICC lines and surgeries and hospital admissions as signs of poor health and to forget that I am still sick or struggling with my health when I am at home or going to school. Attending a class becomes a nonverbal signal that I am doing better. But the bone infection has not been an occasional hindrance over the past decade. Far from it; it has been the one big constant in my life, even when I am going to school.

As a result, I do not look at things in terms of “the light at the end of the tunnel” or “x months until I am better”. I am painfully aware of the past decade and all the broken leg, bone infected struggles it contained. I know too well what I have missed out on and cannot get back. The thought “I am better” has been thought too often only to be crushed with the realization that I am far from healthy. I know better now. There were no brief inconvenient weeks when I was laid up in bed, followed by months of good health. Instead, there were months of pain, numerous surgeries, endless weeks of worry, waiting for scan results and follow up appointments, years of the prevailing thought that something was wrong even when all the doctors told me that everything was okay. So when my orthopedic surgeon tells me that I will have surgery at the end of November, an external fixator for four months, and then more surgery, I don’t think “Great! I will be better in six months; life will return to normal”. No. Instead I think about what problems I could still be dealing with, the possibility that the infection could come back (again), the chance that the external fixator won’t have done what it was meant to do. I am so used to my health issues that they have become normal and it is hard to imagine life without them.

Today I am struggling a bit with the uncertainty of it all. I want to know where I will be this time next year, or in half a year, three months… The uncertainty can be daunting. It is best not to think about these kinds of things, like the future, returning to normal or getting better, because there is so much unknown and left to chance. But the thoughts still pop up from time to time. Just like a healthy person might wonder when their next date or party will be, I wonder when I will be able to walk again. But while thinking about your next date might be fun, wondering about the day you can walk again is stressful and hard.

I just can’t help thinking, “How on earth did I get here? Ten weeks out from the last surgery, three more to go until the next one, followed by four months with the external fixator just to get to yet another surgery. More hospital stays; more incisions, pain, and scars. Then what?” 

How did I get here, to the point where this is my normal? It is so far from what I thought my life would be like at twenty-three. I hope there is a better normal in my future.