One Hundred Posts and Scheduling Surgery

Hurray! 100th Post!!!

Before I mention anything else, I would like to point out that this it my 100th blog post! This is exciting news for me. Actually, it kind of sucks, because it means that my bone infection is still hanging around, nasty little bacteria cells sticking to my bone like a child who super glues his fingers together during art class (we all remember that one kid who did!). But it is exciting none-the-less - it means I am recording this experience as I hoped to do when i set up this page, and committed enough to actual get on with it!

After my last post, about a week and a half ago, I took a short break from blogging. I needed a few quite days to myself, and to focus on a big pathology/pharmacology/physiology test, which was on Monday at noon. Since then I have been studying for a psychology test and waiting for an appointment with my orthopedic surgeon, which was today at ten.

I had another spot on my shin a few weeks ago, which I mentioned on here. It has since healed. I had a few wonderful days without any bone pain last week, but that changed Monday evening while I was taking a walk. Since then I have regularly been having a deep aching feeling in my calf, like something is taking a bite out of my leg, and a strong ache on the right side, right in the bone. Yesterday I woke up with the horrible ten times worse than growing pains feeling, and my twelve hour clinical shift didn't help any. I am happy to have the day off to kick my feet up and relax a bit while studying cardiovascular drugs. The night sweats continue, making it hard to get a good nights sleep. Sometimes, when it happens more than once a night, I am too tired to get up for the second or third time to find clean sheets and pajamas - I just strip and roll over. I did finish the antibiotics (Doxycycline) I have been on for the past fifteen weeks. This medication causes photo sensitivity, so I have been burning super easily. I hope that goes away quickly now that I am finished the medication (and that my leg doesn't flare up again so that I won't have to restart it).

The surgeon agreed to perform surgery as soon as I said that another spot had formed on my shin. he has apparently talked to both my infectious disease specialist and the orthopedic surgeon I saw a while back for a second opinion. They had agreed that I would need surgery if more spots appeared on my shin, which has now happened. It is a bit concerning since this happened while I was on antibiotics. The surgeon spent at least twenty minutes talking to my mum and I. It was greatly appreciated - we know he is busy and has a lot of patients to see, but this was a big one, hearing all the details of what would happen, etc. He has a great bedside manner, explains everything thoroughly, and never seems rushed or bothered with questions. Before I left the fracture clinic I signed consent forms so that surgery can be scheduled. This is the plan:

At the end of August or start of September, I will have surgery to removed the dead/infected section of my right tibia. The infected section is about 1.5 inched long, so the surgeon will take out about 2 inched of bone in order to get clean margins. The surgeon explained it this way: chronic bone infections are treated like cancer (even though it is not). He needs to get good margins in order to get out as much of the dead/infected bone as possible. Tones of antibiotics will then be used to kill any cells still lingering in the bone and surrounding tissue. The reason that the bone infection came back after the last surgery was because there were still bad, infected cells floating around inside my leg. Hence this surgery, which is more extreme but should hopefully get rid of everything, or almost everything, leaving any remaining cells to be killed by antibiotics. The two ends of my tibia will be healed together with bone cement that releases antibiotics. the chunk of bone removed will be sent to the lab and cultures take. 

After the first surgery, my leg will be in a cast. I won't be able to walk on it at all until the the second surgery. I will be pumped full of antibiotics, either oral, IV (through a PICC line), or both, depending on what, or if any, cultures are grown in the lab. My cultures/blood work have never grown anything, except for way back in 2008 when we got stap. aureus and coagulase negative staph. If the cultures grown something, I will be given specific antibiotics targeted to the bacteria or whatever it is. If nothing grows,  the doctors will throw lots of different antibiotics at me, hoping that something works. If this happens, my surgeon said I will feel very very sick, so I am hoping something grows! It is up to my infectious disease specialist to determine what antibiotics I will be placed on. After about two months or so, we will end the antibiotics and see what happens. If my leg, blood work, and scans/x rays, etc. look good seevral weeks later, I will have surgery number two.

Surgery number two is about filling in the next section of my tibia. The surgeon will use cadaver bone and bone from one of my hips to fill in the missing section of my tibia. This bone will be held in place with a metal rod that runs through my tibia. I will be able to place about half my weight on the leg after this surgery. It will take about three months to heal from this. 

The entire process should take 6-9 month, if everything goes as expected - I am young and other wise healthy, so fingers crossed! And really, I can only fall in the 1% of patients who have something of wrong so many times before I will end in the other 99% that heal properly and are infection free. The surgeon gave me about 70-75% odds that everything goes as planned. I like those odds! 

The surgeon did say that this was much more extreme than the previous surgery, which only involved scrapping away the dead and infected bone from my tibia. With this surgery, they are just going to cut a large hunk of bone out. He said to expect it to hurt a lot more, especially the bone graft. Apparently harvesting the bone from one of my hips hurts a whole lot more than the actual site of the bone graft. I will be in the hospital anywhere from 1-2 days to a week for both surgeries, depending on how quickly my pain gets under control. To be honest, with this surgery, and possible a PICC line, and the fact that I will be missing a chunk of my tibia, I won't mind staying a few more days in hospital than in the past. 

My surgeon used the x-rays I had in the E.R. in February to show me where the infection is and how much bone he would take out. I got pictures, as usual, with my phone. I took out my phone while the suegeon went to get a consent form. He came back before I was done. I said "just taking some pictures of my x-rays." He replied "Of course," and gave me two different shots. I have done this before; he knows me well. 

The surgeon measured the suzpected size of the infection first:

and then the size of the piece of tibia that would likely have to come out:

Since I had an MRI in December, bone scan and WBC scan in January, x rays in February, and CT scan in April, I don't need anything else for a while. My mum asked him if there was anyway there could be more infection in my leg than shown by the MRI and x rays, but the surgeon said given all the scans I had done it is not likely there will be anything surprising in the first surgery. I half heartfelt said "maybe you won't find anything at all," but that is wishful and foolish thinking. Before leaving, I signed a consent form to get the ball rolling. Hopefully in a week or two I will get my pre-op package in the mail with all the information I need. And that is the plan. It is scary and time consuming, but it should be successful in getting rid of the resident leech, slowly nibbling at my bone.

I am both excited to get rid of this darned thing and sad. Nobody wants to have surgery, let alone two surgeries, one of which is inevitable after the first one it done. But I think this is my best shoot, as does my surgeon. And I still have three months left to enjoy the summer. I think it will go by quickly. 1/4 of the semester is already done. As of today, only 11 more weeks to go!

I blogged a month!

It is a month! Today, May 20th, I have blogged every day for a month! When I started on April 20th, after coming home from a CT scan, I wasn't entirely convinced I could do it, but here we are! Now I am not sure if I am disappointed or relieved that it is over, or if I will continue posting everyday or not. I will likely not post every day, what with school and the redundancy of posting "my leg hurts, guess who has night sweats, I hope surgery will be scheduled soon" all the time but I would very much like to continue to blog at least every few days. I have found it very calming and therapeutic. It really helps to type out my thoughts and get them (more or less) organized instead of having them fly like bees in a honey jar around my head. And it is important for me to have a record of this time for when I am, hopefully, better one day. Memory changes experiences, and while this experience really sucks at times, I think there are things in it that are important and help me be a better person.

Today was not as promising as I hoped it would be. I woke up some time in the night, drenched in, you guessed it, sweat! That makes five time in the last seven nights. Five freaking times in one week.  I couldn't be bothered to change after I woke up... no more groping in the dark for clean, dry pajamas while try to be as quiet as I can be on an incredibly squeaky wooden floor in order to not wake up my roommates and the people who live upstairs. The quieter I try to be, the more noise I seem to make. The last few nights I have felt like an elephant stomping on a pallet of eggs! Last night I simply stripped and rolled over. Unlike my room in St.Catharines that has a twin sized bed, the one in the room I am subletting has a queen. So, like any person who has woken up because of night sweats one too many times, I simply rolled over to a dry sectioned of bed sheets and went back to bed. Normally I wouldn't do this - I would make the effort to find dry sheets and clothing - but after five time a week I none to thrilled when I wake up like that yet again, and to be frank, it is beyond exhausting and frustrating.

I woke up completely exhausted. Didn't feel like I slept a wink (I wonder where this expression comes from). I was really pale - looked like a sheet of paper; I could only get my eyes half open; and there was a killer headache for about an hour in the afternoon. The cold and chills are still sticking around as well. It is to bad that the fading winter didn't take those away with it. I don't know if everything I am feeling is the bone infection (leg didn't hurt at all today!), or the cumulative effect of almost fourteen weeks of antibiotics, or a combination of both, but I am so so so done with it. I need to feel ok, healthy, normal again, but that isn't going to happen... and even by some chance that I do feel really good in the next few months, it will all change when I go on antibiotics again before surgery later this year... By the time I stop the antibiotics next week, and take some time to rebound from how crappy I feel, I will only have maybe two months before I am put on them again, and that is only if the damn infection doesn't do anything. And of course, as I type this, I a get a horrible constricting feeling deep in my leg...

Despite all this, I forced myself to get a tone of school work done today! My focus for the day was the Developmental Psychology course I am in. Tomorrow I will finished the last bit for next weeks psych class, and then continue studying for next weeks patho/pharma/physiology test. I am actually feeling pretty confident about it already. If I had to write it right now, I think that I would pass.

I went on my usual walk around campus tonight. I try to stay out for at  least an hour. Yesterday was an hour and a half. I saw the deer again and enjoyed my stolen moments. There were two grazing among a bunch of bushes and trees by a parking lot almost at the sports stadium. I wanted to get a picture, but it was to dark/my phone camera to shoddy, and then I thought "enough with technology and pictures", so I stood there for a quarter hour just being, and taking in the moment. As I was leaving I saw a third dear far away near one of the emergency button/phone stations on campus, exploring the var unnatural blue lights that turns on when someone (or something!) approaches it. It was quite dark down there, not really safe enough to go alone at night, so I left it as is. I am actually not sure if I am allowed to be on campus that late at night, since I don't live in a dorm (I am subletting across the street from campus/the hospital). I haven't been approached my security or anything, but that might namely be because I haven't seen them yet. I hope it is alright, and I will continue to do it unless I am told I can't. It is so peaceful, almost as if you are the only person on the entire campus. Everything feels... I don't know how to describe it. I think a lot when I walk, especially about surgery/bone infection. It's not a feeling that everything will turn out alright  in the end, but it is a feeling that things will be ok no matter what happens. I don't think I described that very well... not sure if I can.

Angry

I am very pleased to say that I did not have any night sweats last night! Woohoo! I finally got the good solid night sleep I needed! On top of that, my leg hardly hurt at all - just the odd stinging here and there and pain every time I took a step for about ten minute this evening while I was taking a walk. And on top of that, the spot on my shin looks pretty good today - not fluid coming out of it, no excessive redness/puffiness. This is quite pleasing for me =)

My day went pretty well, although I broke my favorite water bottle by accident. I was putting it down so I could get my shoes on and I dropped it by accident. Fortunately I was able to get another one (although not the same pattern) at the gift shop of the hospital where I see my infectious disease specialist. The hospital is right across the street from my place, and right on campus where I have class. The benefit of being both a patient and a nursing student is that I know where the gift shop is an don't feel out of place there! I can totally just walk into the hospital to go to the gift shop because I do it when I have doctors appointments too.

Mum drove me back to Hamilton yesterday evening. Traffic was quite slow, so we had lots of time to talk. We got to talking about the bone infection and I said I am angry. I am not just angry, or a little bit upset. I am angry angry angry. I am angry that this is happening to me, that the infection came back, that I need more surgery. I am angry that we all got our hopes up that the last surgery would work, and despite, at the time, my gut feeling and my fears, I let myself believe that I was better and I became comfortable with that feeling. I was convinced I was ok, and I moved on, and now I am back where I started. Back to being ill and uncertainty and fear and waiting, and that is devastating and crushing. I have said that I am angry before - that is not something new, but I never let myself reflect on how angry I actually I am. It is not anger at a person - not at my doctors who I truly believe have my best interest at heart and thought that they had successfully treated me. I am angry at the situation. I am angry that against all the chances there were for this to never come back, that it did anyways. I am angry that I am, given my high hopes about the 2012 surgery and the recent relapse, that I already question whether more surgery is even worthwhile because what if it comes back anyways. This is a deep sadness. I am not sure if it (surgery, a chance to get rid of the infection) is worth it. I am not sure if I want to fight it anymore. In a way I feel like I have given up, and that is something I never thought I would say. And that makes me angry.

I discussed this with one on my classmates on the bus today. I told her I am angry that this takes up such a portion of my life that I talk about it everyday, and that my friends/family have to listen to it too. I said I feel like throwing things, breaking things. I want to get a cheap ugly, utterly hideous set of dishware from a thrift store and throw it all, piece for piece, against a brick wall. I want the angry to go away. She understood. I am so glad she understood, because most people don't... they can't. Not really; not unless they have gone through a chronic health issue/relapse themselves.

Don't get me wrong, I am not walking around all day everyday like an ominous dreary rain cloud casting gloom and darkness everywhere I go. There are many wonderful aspects of myself, and I am often very happy. But, at the moment, everything is underlined with bone infection and surgery, and that make me very sad (and have I mentioned angry!).

Now that I have used the word angry countless times without bothering to look up other versions of that word in a thesaurus, I am sure we are all sick of it. I think that it is time for bed - I am freezing cold again. Venting on here helped relieve some stress and emotions a bit, and now I can curl up in bed with a good book and hopefully get warm.

Birthday Wishes - Have a wonderful day mum!

 Happy Birthday Mum! I know I haven't sent you the link to my blog yet, even though I have shown you bits of it now and then (and you hear about it quite a bit!), but one day you will see it, and I want you to know that you are awesome so I am sending greetings and birthday wishes to you online as well!!!!

My mum loved the decorations I put up last night. It was well worth staying up late to do. The only things was that our birds were a bit afraid of them. I didn't see it, but apparently they would fly under the streamers and crash into the opposite wall in their attempt to avoid them. I think the vase with the butterfly decorations was the best part. I will have to buy some more of those. Mum thought they were very pretty. =)

I woke up this morning, about four am, drenched in sweat. Not only were my pajamas soaked through (night gown, pants, underwear, but my pillow and bed sheet where drenched as well. I was to tired to deal with it - I gripped around in the dark for dry pajamas, and put a towel over the bed sheet to sleep on. Of the four night I have been home, I have woken up with night sweats nights (about six different time, one tonight, 3 times the night before, and twice I think on Thursday)... It is very frustrating, and exhausting (and caused a lot more laundry). I ma now back in Hamilton for two weeks. I brought I giant pile of extra (recently washed... ya, at the rate the night sweats are going...) pajamas. On a bright not, my cold or whatever it was is almost going. My throat is hardly scratchy anymore. Hopefully it will be all better tomorrow when I have my one and only day of class for the week. I wish my leg would do the same. Pain is as usual. Slight throbbing along the scar tonight while I did my Health and Healing prep work for tomorrow, and finished a package on heart disease.
That is it for now. Time to catch some sleep. I want to be well rested for tomorrows lab class!

Four weeks of blogging

 Today marks twenty eight days (exactly four weeks!) of blogging. Only three more to go to make it a solid month.

Unfortunately, I didn't feel any better today. I woke up soaking wet due to night sweats three times last night! Not once, which is usually the case; not twice, as occasionally happens; but three times! After the third time I was too tired to care and rolled right back over instead of finding clean dry pajamas. My right leg hurt on and off again throughout the day. A lot of sharp, stinging pain that felt very deep in my leg. While I have been having pain in my leg since last year, the pain I am having now is definitely very similar to that I was having way back in 2012 before surgery. My mum asked me how the pain was - I had to think about that for a moment. It hurts almost everyday (not major 5 or more on a scale from 0 to 10, but hurting all the same). The pain has become so common place that I don't even tell her most of the time that it hurts anymore... I think by not telling her it hurts that it actually might think that it doesn't hurt. Its just that If I told her every time it hurt that I would be telling her all day everyday. She gets bored of it. I get bored of it. It is now common place and an established part of my life. It makes me sad to think that this it the case. She hopes the world for me, and the last thing she would want is for me to have pain. So often has she told me that she would take it from me if she could =( I am so fortunate to have her as my mum, always standing by me, there for support and going not only through the fun things in life but also the hard, unpleasant things.

There was also a tiny bit of pus on that spot on my lower shin again - never enough to be really concerning, but there all the same. I should really call my infectious disease specialist, but I won't. I am over this. I want to stick my head in a big bucket of sand and not come out for a while. It has done this countless times before. I know how this works.

Mum and I talked a bit about the surgery I hope to have end August/Early September and the panicky moments I get about it sometimes. I am really scared of the process leading up to the bone graft in the second surgery. .I mentioned my fear that the infection could come back after the bone graft. Mum asked me what I would do then. I said. "If it happens, that is it, not more surgeries, I will live with it." The bone graft process is going to be long, painful, and exhausting, not to mention an emotional roller coaster and ultimate test in patience. I don't think I would have anymore fight left in me after that. But we are not there now. We are counting on the bone graft working! Positive thoughts!

 On the bright side of today, mum and I got my grocery shopping done today, this time for two weeks since I won't be coming home next weekend (big pathology/physiology/pharmacology test on the 25th. I study better in Hamilton, so I will stay there through the weekend. I also bought a fan for when it gets really hot (new place doesn't have air conditioning - fan is a students right of passage!). Mum then dropped me off so I could get some sort errands done (e.g., but birthday card, decorations, school supplies, etc.) I was wiped by the time I got home but it was worth it! Even remembered to wear sunscreen today, although I still burnt a little bit.

Tomorrow is my mum's birthday. I decorated the kitchen (like our common space) after she went to bed. Despite some very deep pain on the left upper side of my shin, it was very enjoyable! I hope it will be a fun birthday surprise, as I have never decorated for her before! Despite efforts to make a big deal of her birthday, my mum usually like to keep the day pretty low key. She makes it impossible to get her gifts too! She said she is just very happy to have both my brother and I home tomorrow. If it wasn't for the Victoria Day long weekend I would have been back in Hamilton already. We don't have many relatives, so I am extra glad to spend the day with her and only go back to Hamilton in the evening.

I found the butterflies at the Dollarama (pack of 6 for 1.25) and the pretty gift box ad Dollar tree for 1.25. I embroidered the bumble bee and bird tags my self. There are some small gifts and an embroidered card in the box. My mum is really getting into gardening. For weeks I have been asking her is she would like gardening tools for her birthday. She thought that was a great idea, but then went ahead and bought them herself! So I am giving her some money to cover some of the tools.

About the kitchen table. The banner was much larger than expected, so couldn't fit over the table.

Entrance to the kitchen - first thing she sees when she goes to make her coffee!

Other door to the kitchen... not escape from the streamers!

Above her favorite chair in the living room!

Working hard or hardly working

A lot of school work has been getting done in the lasts two weeks. Not only am I completely on track of all m readings and assignments so far, but I am well in advance for some of my courses. One, course, for example, has weekly online quizzes. Every Sunday during the last semester a new quiz would open up, and students would have a week to complete it. This semester, however, the instructors have opened up all of the quizzes for the first half of the semester at once. The they are all due on different dates, the last one being May 31, but you can complete them all at once as long as you get them done before their individual due dates. I just wrote the fourth and final one... I am shocking myself. Now, I have always been a good student; and excellent student really. I graduated my final year of high school with a 96% average, and graduated from university with the highest average in the faculty of humanities. But I am working harder then I ever did before, and I am not sure that is a good thing. I have felt pretty icky lately, with bone pain, night sweats, always being cold, side effects of the antibiotics, etc. And the whole bone infection thing in itself doesn't help either - the emotional roller coaster, the whole kerfuffle in January with scans and February with the E.R., doctors with different opinions and ideas about what to do, the overall uncertainty of everything... It is very much likely that I am using my school work as an escape of everything going on. This firghtents me a bit. I have been through a lot with my leg, but I have never gotten to the point where I poruposefully distract myself inorder to forget about the infection for a while. Let's take it as a sign that I have been sick with this thing for too long. It is kind of ironic, because since I feel this need to get school stuff done in order to distract me, I don't actually feel that I am working at all... So I am both working hard and hardly working... distracting instead! What will happen when I finish all the school work? I have know clue. On the bright side, at least I am setting myself for awesome marks and an academically stress free semester.

I slept for a really long time again tonight (10 1/2 hours). I woke up feeling groggy and tired. The back of my throat is completely dried out. I am freezing my ass off. It must end! And I have been having intermittent bone pain on the outside portion of my right lower leg this afternoon and evening.While poking at the spot on my shin this evening, the top layer of skin just kind of slid off. It has done this before - tones of fluid underneath. In the past this has meant the start of the spot actually healing, so I hope that happens now. Given the bone pain and how deep it was today, I am considering callin my infectious disease specialist on Tueday (Monday is a day off). I know I have siad this before, and i usually don't act on it, but I need to catch a break. Hopefully sehe can figure something out. Between now and the fall (hopefully surgery) I still have to get through another thirteen weeks of school/clinical/final exams. It would be pretty miserable to be hurting the whole summer long.

Time for a last cup of tea and a crossword puzzle now. After seven hours of school work (on a Saturday) and how I have been feeling, I think that I have earned it =)

Balancing Act

I found it, quite naturally I think, quite difficult to decide between having surgery and letting things be for a while. Several weeks ago my mum suggested that I make a list of all the pros and cons of haveing surgery. This is the list that I came up with:

Pros
- no bone pain
- no  night sweats
- no flare ups, with swelling, itching, sores, drainage, etc.
- no antibiotics, which is healthier for my body and means no bothersome side effects like photosensitivity, headaches, or somtch upset.
- I will be able to stand for long periods of time - go nursing career!
- There won't be any appointmnets and scans to worry about, which means living like without scanxiety or worrying about what my doctors wills say.
- I can plan for my future without having to think about how the bone infection could interfer. The unpredicatablility of the infection is incvoneinet and hard to deal with E.g., Tuesday I had horrible pain where as on Wednesday I took two walks, one of an hour and another of two hours, and had no pain at all, and then Thursday when I walked a bit and had a little bit of pain.
- If the infection is gone, I won't have to worry about it pissibly becoming worse in the future
- Care free
- 90% + success rate
Can start looking for a job after graduation/passing certification exam without have to consider needing surgery later on
-school will likely allow me to take the time off and then stream back into the program (high grades help with this!)

Cons
- surgery will cause pain
- PICC line for several months
- Scar on shin may become bigger or look worse
- might not get all the feeling back on my shin (one spot never regained feeling after surgery number three)
- scar on hip from harvesting the bone graft
two semesters off of school/ graduating eight months later than expected
- Cannot graduate with friends/clinical group
- 10% chance surgery doesn't go right - issues with bone graft, new infections
- bone infection could, potentially, still come back after the surgeries/treatment
- strain on family (would be the same if I would have surgery in several year - move back home or use up lots of saving on rent when unable to work).
- mind numbing boredom between surgeries and while I recover from the bone graft.

What I concluded after making the list, was that most of the pros involved positive, long term things, while the cons included a lot of things that are negative  (e.g., pain, PICC line, time off from school) or undesirable, but ultimately short term.

Yes, pain and surgery are not fun and, quite frankly, scary, but so is living with the bone infection and the pain that it causes for the next, what, 5, 10, 20 or more plus year!

Don't get me wrong, I am really really really nervous. The surgeries are still scary and a bit risky, but I think that the potential (and likely) outcomes are far greater than the risks.

Now I just hope it is still on the option when I see my orthopedic surgeon in two weeks! I haven't heard back from infectious disease yet. Not sure if I should call her. Leg stills stings a bit, and drainy spots are still there. Actually a very tiny bit of puss this morning, but since it looks better in general I might just leave it as is. Nothing bad can happen anyways, since I am still on the Doxycyclin (only twelve more days!).

I am so fortunate that my mother will support me no matter what I choose regarding surgery. I hope she knows how incredibly much I appreciate it. There is nothing I can do to truly show how much it means to me that she has gone with my through all this! 

On a side note, mum and I made a late night dash to the grocery store at eleven o clock. This is something we do maybe once a year. We got tiny tubs of rolo ice cream and black forest cake... delicious!

 

Mmm! Cake! 

Still very happy with the hair cut, although I didn't use anything in it today. I usually don't, but I really liked what the hair dresser did with it yesterday evening. I look tired again. I slept for 13 hours and felt pretty yucky/tried the first few after I woke up. Then I got about seven hours of pathphysiology done and felt pretty good. Still tired, but good.

Panicky moments

As I mentioned yesterday, I have been having some panic filled moments recently. As my decision to have surgery sets in, I am moving beyond the idea of "I am having surgery that will fix me," to "holy crap! For three months there will be no bone between two ends of my tibia," and "How the hell will I get through several months of IV antibiotics with the dreaded PICC line when I hardly got through eight last time?" I had hoped that making up my mind would make the panic even just a tiny bit less, but it is still there, strong as ever. Truth be told, I am scared. This is probably the scariest thing I have faced in my life, and that is saying something, because I have been through some pretty gnarly stuff. The panic and fear has not swayed me. I completely plan to go ahead with surgery. But the panic is still there, and I need to figure out a way to make it a bit less.

Speaking of surgery itself, I called my orthopedic surgeon's office this morning. After playing phone tag for a while, I finally got hold of reception. I was hoping for an appointment tomorrow, but his clinic was booked full. Next week Friday doesn't work either because the surgeon doesn't have clinic that day. So my appointment is for May 29. I was hoping for earlier, especially since my leg is acting up a bit right now, but it was the best I could get.

My clinical placement started today with a meeting about placement itself, expected behaviors and learning objectives, assignments, a tour of the two wards the group will be on - Oncology Rehab and Orthopedic Rehab - and a computer course in Meditech. It is a weighty moment when you realize that you now have access to all the patient records of the hospital system - I feel proud and a sense of responsibility. They trust us to behave professionally and not mess around with the system.

The tour of the hospital wards confirmed for me my decision to have the surgeries. I only stood for about an hour today. While in the medication room, listening to the instructor talk about appropriate waste receptacles, I thought "Hmm, my leg feels funny," quickly followed by "Oh, great (sarcastically)... that would be my infected leg". I am not sure how I will make it through twelve hour shifts; five hours in long term care was hard enough. Fortunately my clinical instructor is very kind and understanding. She told me that I can sit down/take a break whenever I need to, and that it is okay if I don't work up to taking care of two patients by myself by the end of the semester as long as I am able to make patient care plan, administer medications, manage my time appropriately, etc. I expect to be able to handle two patients - fatigue is not the biggest issue, I think. But standing all day will be quite hard. I am so fortunate that she understands this. Other than standing all day/bone pain, I am quite keen on beginning working with the patients. Next week we don't have clinical, but we do have a bunch of assessments, medications, and nursing interventions we need to research. The week after that will be our "buddy week", where we shadow a nurse for the entire shift. After that we are set free, to an extent, with out own assignments to work on and objectives to meet each week. I am so incredibly excited!

I am now home, in St. Catharines, for the weekend. On the way home mum and I stopped at the hair dresser so I could get that hair cut I was talking about yesterday. Now, as cold as every, I am going to bed.

Resolution

"I am going to call the surgeon today and ask him to schedule the first surgery."

Are you sure?

"Yes."

Would you like to talk about it tomorrow when you are home?

"No. I am going to call his office today." 

Alright.

We can talk about it tomorrow if you like, but we have done that before. We know exactly where we are. Talking more won't change that. I need to make a decision and get on with my life."

This was the conversation my mum and I had via text message this afternoon. I have decided that I am going to go ahead with the surgeries my orthopedic surgeon proposed in February. I am not entirely sure of my decision, but I can't stay in this weird place of waiting anymore. The need to know what is going to happen and to feel in control of my life has been tugging at me for too long. This limbo, or standing on the edge but never either taking the plunge or backing away, us holding me back, frozen. So, even though I am not 100% sure of my decision, I am following my gut and going with it anyways. I am afraid of the pain and discomfort that surgery will bring, of the potential side effects, that surgery might cause more harm than anything else, but I am more terrified of staying where I am right now forever, not being able to make up my mind; ready to act when my leg flares up but eating my words when the pain goes away, allowing myself to almost entirely forget how bad the bone pain can be or how emotionally draining this experience is.

I think that this decision has been coming for a while now. I remember sitting in the fracture clinic on a Friday afternoon in February, desperately asking my surgeon "Can you fix it?", him responding "I can, but it won't be fun". I remember him explaining the surgeries, commenting on my facial reaction: "Yes, it (fixing my leg) is that bad." How I left his office feeling numb and alone. Calling my mum, almost in tears as I sat in the hospital cafe, cutting the call short because my phone was out of money. Then sitting on the bus, feeling very tiny and fragile, surrounded by all these happy people, going home from work, maybe excited for plans for the night and the weekend, while I had to digest all that horrible news. And this horrible feeling of resignation, slowly creeping over me - I would eventually have to get rid of the infection, and that would mean a hell of a lot more pain and being sick before getting better.

The last few months have been full of school and making new friends, living on my own and exploring a new city. It has been wonderful, but at the back of my mind there is always that dilemma - should I have surgery or not? And then I finally made my choice:  I was going to go for it. Then the latest appointment with my surgeon happened. Words like "medically not necessary at the moment", "wait and see", "reevaluate in several weeks when the antibiotics are stopped". There was shock, and sadness, definitely anger too. Then back to the waitng game and weighing out my options - infectious disease vs. irthopedic surgeon vs. my thoughts about it all. 

The last few days are, as some would say, the straw that broke the camels back.

I miss the warmth of the sun on my face, feeling the cool breeze in my hair, being around other people enjoying the spring afternoons. I have been burning like crazy. As a result, I only go outside in the day time to get to and from school (ten minute walk each way max.). I don't want to be on Doxycycline, which seems to keep the infection under control, every time my leg flares up. 

The chills and always being cold are pressing my nerves. Sometimes they are so bad that they feel like they are burning. I never physically shake, but I have to brace myself as they seem to run through my body. I remember how good it felt wnter 2013/14 to be warm for once! That was the first whole winter that I was bone infection free. It made a big difference. I was no more cold than anyone else! As my leg started to hurt more late last fall, the cold feeling and chills came back too. The timing is too much of a coincidence.

Bone pain sucks. There is no real way to describe it. Those of you who have had it know exactly what I am talking about. Dull, achy, and deep is the best I can do. Or as I like to say "like something is taking a it out of the bone". Yesterday was a horrible day for bone pain. There were moments I was almost in tears; others that it caught me so off guard and was so deep and intense that I couldn't move. And then today it was all good - went for a two hour walk on one of the trails at the back of campus and had know pain at all. There was a little bit in the evening, but nothing compared to yesterday.

Night sweats. Good old night sweats. Woke up again at about four this morning with my shirt soaking wet. Happened on Monday morning as well. And once last week. Not to mentioned all mornings I wasn't frenched in sweat but defintly has a wet neck/some moisture on my night shirt

Add eveyrthing together, and I am done. I don't want to wait an see. I don't want to learn to live with it. There is no learning to live with it. It can't be done. Not with the chills and night sweats and bone pain and...

... and don't for get flare ups. Have some wonderful spits on my shin right now - small as always but definitely still there.

Always the same spots. And always such a horrible itch - it is untoucable. You can't see it in this picutre, but when you look closely at the skin you can see it starting to dry out, crack, and flake off. This is what happens when the swelling goes down. 

I don't want it anymore. Any of it. Hence the decision to go ahead with surgery. The potential risks are worth it. I am to young live with this forever.

I called the fracture clinic today, but they had already closed. Who would have thought reception only picks up from 8am - 12pm? I will call again tomorrow morning.Fortunately clinical doesn't start until 10, so I have time to call before I leave my place in the morning. I will mentioned my leg as well. Maybe I should call infectious disease as well. Since my leg didn't hurt nearly as much today as it did yesterday I didn't call. Maybe I should now that I have made my decision to opt for surgery. 

Unrelated to bone infections and all that, my walk behind campus was lovely! It smelled woodsy, as is expected! Lovely damp soil and fresh springs leaves - still that soft light green. And the sweet aroma of budding flowers on threes all around campus, greeting me as I stepped outside my front door this afternoon. Because I live right across from campus, I feel that it is kind of my home (even though I am not in a dorm). Old brick buildings, arch ways, greenhouses, stone benches - it feels academic. Tall fir trees, lots of grass and greenery, pine cones! I honestly felt like I was walking in a vacation park back in Drenthe. And it is a beautiful campus! I have also been exploring the neighborhoods around the campus. There is a  very European feel. It feels like home.

 View either way from the bench I was sitting on.

Me in my lovely sun hat, keeping the sun away!

For the sake of it, here are several other pictures.

 

 In my scrubs after the first lab class of the semester! Can you tell how tired I am?

 

Me this evening. Still tired. Need to get  hair cut. Wish I had thought of that earlier... not I have to go to clinical with this weird fringy bits at the back... so much for looking all put together on the first day!

I went on another walk around 9:30 tonight. Completely unintentional - only meant to go to Shoppers Drugmart (not even 5 minute walk away) to buy lip chap with sunscreen in it. Ended up walking around campus again - saw Mr. Raccoon in his usual spot by the sport field, totally unperturbed by the horded of athletes practicing. I should get a picture of him one day. Also saw a host of tiny black baby squirrels running along the ivy creeping up one of the older buildings on campus, and skunk strutting around with its tail in the air (I walked away quickly!) by one of the houses near campus.
When I got home I took a second shower for the day (completely unlike me). It helped for a bit but I am once more freezing cold and have the chills. 

To end ona  good note, I am trying a new lip chap tonight (not the one that protects my lips from the sun - apprently they can burn too...). It is raspberry rose - smells so light and airy!

Sorry they picture is so blurry.

That is all for tonight, I think. Over the last few weeks I have had some moments of pure panic at the though of what surgery means - not walking on my right leg for three plus months, living without a piece of tibia - two ends completely disconnected form one another, the dreaded PICC line, surgery itself and waking up groggy and in pain afterwards... but I am happy I have come to a decision. I am happy to feel I have some control back. Over the past days people have asked me why I can't just live with it. That is a difficult and personal question to answer. I hardly ever talk about how my leg broke - it is not a story worth repeating. It also bring back very difficult memories - which is another reason to go with the surgery. I need to move on from the past. Also, it has been over nine years. I have been through so much - surgeries, uncertainly, being sent away from doctors without answers, pain/physical symptoms, missing out on the normal things other people my age do, the emotional roller coaster. It is time for this to get better and go away. It is not as simple as "just living with it" or not thinking about it. I wish it were. Instead I have chosen to fight it, again, Hopefully this time it works.

Am I still posting these things?

This is my twenty-third consecutive day of posting. I am not sure why I continue - it hasn't turned out to be anything like I had hope it would be. Way back in April I was eager to dig deep into my pile of sticky notes baring ideas I wanted to blog about. The first few days went great, but then it kind of all went down hill, in my book, after the first week. I feel like all I do now is complain about the damn bone infection. It gets boring to write about after a while, and I bet boring for you to read as well but that doesn;t stop it from still being the number one thing I blog about. Why? Because it feels like it is an ever invreasing black hole sucking the life out of my world.

Ok, that is an exageration. life is good, for the most part. The nursing program is going great - kearned how to administer oxygen to patients today in lab class, clinical in an actualy hospital begins on Thursday, over the giant learning curve that hung over semester one like a big ominous cloud of unknown terminology and fear (yes, the first weeks at the long term care facility were full of fear of someohow, inexplicably, causing mass harm by helping elderly people get their socks and slippers on!).

But the bone infection is still there, always at the back of my mind despite how hard I try to ignore it... The red spot on my shin is still there, still oozing a bit of clear fluid, might have been some puss at one point today. It has been hurting more than usual - deep dull achy pain on the sides ad back, stinging sharp pain over the scar, so fast you wonder if you imagines it. I have been freezing cold all day, full of chills. My temperature is usually about 36.5. That is what it was this afternoon but it reached a whooping 37.3 about 10:30 pm. I have been taking my temperature for months. It pretty much never gets that high. And the chills are worse than usual this evening. I don't know what to make of it. I don't know if I care anymore. I think I do, but I don't know if I want to care anymore... If I still feel off tomorrow and my leg continues to hurt I will call my infectious disease specialist.
I try to ignore it. I will myself to ignore it - sitting in class, loving every minute of learning about asthma and bronchodilaters... and then the leg hurts; studying the immune system and allergic reactions late at night... and then I am freezing cold, and my leg hurts!; wanting to go for a walk in the afternoon sun, but remembering that I can't because the antibiotics cause photosensitivity; enjoying a walk in the cool evening under stormy dark clouds blocking the setting sun... finally out in the fresh aired wide open world, and then, guess what! Leg hurts. These needs to end. I am done. it isn't even about the physical symptoms anymore... it is completely about the psychological and emotional toll this has on me. Nine years now. Sometimes I worry that I make too much out of it, that other people think I am over exaggerating. But then I think of all the things I have been through and I don't feel bad anymore. With hindsight everything together looks tiny and miniscule. Time fades how badly things felt. But in reality a lot of things just really really sucked, and the relapse is just one more thing to add to a giant list of sucky things. I need this to be gone before I continue with my life - it can't be there, always lurking, almost as if it is waiting, to come out and spoil things - graduating, getting a job, traveling, buying a house in a few years, hopefully dating, getting married, having kids. The infection and initial broken leg have interfered with so many things in my life - stolen from the normal things. I just want things to be normal and fun now. So the infection needs to get out.

One of those days

Today has been one of those day...
Spot is still there on my shin, now oozing a bit of clear fluid. Still not sure if I will call infectious disease or surgeon - already on antibiotics anyways.
Bone pain - some sharp, mainy dull aching taking a bit out the back of my leg type of pain. Occurred mainly in the afternoon/evening. Stopped just after eight pm.
Woke up at almost 4 am to go to the washroom - saw giant centipede between me and toilet and said screw it - turned of light and ran back to bedroom (cause I am a scardy cat like that!).
Woke up shortly after, soaked in sweat (I wish I could say it was weather related, but it went down to 10 degrees last night). Night sweats had almost gone away, just occasionally waking up with mack of shirt around neck a bit wet. Will see what happens to night.
Still feeling forever cold - can feel the tip of my nose right now... like a dog. Bah!
Headache all morning, nauseous from doxycyclin (eating and drinking before/after taking it doesn't seem to be helping much anymore, at least not in the morning).
Some major tooth discolouration going on thanks to the Doxy as well... will go to the dentist to get my teeth cleaned in a few weeks when I stop the antibiotics. I think it looks pretty gross, especially since I pride myself on taking really good care of my only set of chompers (teeth are for life you know!). Just seems like a bad way to make good impression when clinical starts on Thursday...
Tried to go for a walk. It was drizzling a bit, so I wore my raincoat and took a hat and my umbrella. Thought it would pass over. Within ten minutes the sky was dark and angry. Rain coats are only water proof until a certain point - I was drenched so I came home and took a lovely piping hot shower. Great until I saw my leg after... it was red. Red and angry. Angry red. Fortunately it has subsided quite a bit now.
Discovered we have mice coming through a hole in the wall into a cupboard in the kitchen - ate almost an entire role of Maria biscuits in just a week. The landlord should come tomorrow to fix it/set traps.
I think the guys who sublet upstairs smoke - subltle smell in my room all day.
Like I said, just one of those days.
At my breaking point with the infection. Chronic bone infections suck!

The day was not all bad - I enjoyed psychology the morning, along the Health Sciences this afternoon (learning about Asthma treatment). I bought my kit of medical supplies for lab this morning. Excited for Lab to start tomorrow (doing oxygen therapy and medication administration! Got free pizza on campus. Completely on top of all my school work. Just the end of Monday but already only have one more class to finish up content wise for the week, and already well into next weeks content! And have a long weekend coming up XD

That is all. Leg starting to hurt again. I want to post about normal things. Sometimes I wish I didn't have this blog at all - not more bone infection, no more reason to post, no more therapeutic taping away like an angry dancing chicken on my keyboard! I am going to go finish reading
"Zeus grants stupid wished: A no-bullshit guide to world mythology". A good laugh will help today end on a good note.

Red spot and an itch

I had some bone pain this morning/early afternoon. Not severe, but there none the less. It went away went away by the time I got to my father's house (about 4:15) for dinner. I got back to my place in Hamilton just after 8. While I was putting my new book case together my shin started to itch a bit. I ignored it, finished building the bookcase, put away all my clean laundry, groceries, and textbooks, and went for a walk around the hospital/campus. As usual, it was lovely - a stolen moment - walking in the cool, misty air, all alone. My leg felt a bit odd but I chose to ignore it. I got home just before eleven and decided to shower - throughout my leg became more and more itchy. It is a horrible itch. Nothing makes it bearable. At times it feels unbearable. There is also now a small red spot, almost on top of the scar left by a previous abscess on my shin. I will wait to see what happens until the morning. I am not sure if I will call my surgeon or infectious disease specialist about it - not much they can do anyways, since I am already on antibiotics. I took pictures to document it show I can show my doctors the next time I see them.

I want to be beyond the point of caring. I feel I am on the verge, but at the end of the day I can't cross that line - there is no other choice than to keep hoping that this can be fixed.

I have been talking about my options with my mum. She suggested I write out the pros and cons of having surgery/not having surgery to help make up mind or, at least, to see all the factors together instead of independently. I will try to do that after classes end for the day tomorrow afternoon.

All I want for tonight is for the itch to go away. I don't know how to describe it - it is intense, from deep inside. I swear it will drive me mad one of these days.

Update

I saw my orthopedic surgeon last week, expecting to schedule the first of two surgeries for the end of August or start of September. Despite my expectation, and having come to terms with my decision, backed by my infectious disease specialist, surgery was not scheduled. I was, understandably I think, quit upset about this - not so much because I want surgery (because I don't), but because I need this infection to go away. The relapse is mentally and emotionally draining, not to mention physical symptoms. I haven't posted about this in the last week because I needed the time to come to terms with what the surgeon said, think things through, discuss them with family, and simply just to calm down a bit. Now that it has been a week, and school has started, allowing things to get back to normal (ish), I am ready to post about it. I am not sure how many people actually read this, but I think it is therapeutic for me to write non-the-less.

Mum and I left St. Catharines just past 9:30 am on May 1. My appointment wasn't until quarter to twelve, but I wanted to drop some stuff at the room I am renting for the spring/summer semester. The new place is lovely. I will post pictures this up coming week. I meant to do so last weekend, but I lost my camera (found it under a pair of pants in a drawer this afternoon... no clue why I put it there. Probably for the best since I didn't get to buying a new bookcase until Thursday - my last one was ruined in the last room I rented, the one with crazy cat lady, when a pipe started slowly leaking, drip drip dripping away and went unnoticed because of how slow the drip actually was - so all my binders and medical books have been scattered across the floor). Anyways, I have side tracked. In between dropping off some stuff and my appointment mum and I had some time. We drove to Westdale and found a lovely little bakery. I am not ashamed to say we splurged on egg bread, flowers shaped like giant daisies, and chocolate croissants. After that we drove to the General Hospital.

We got there with time to spare (a good thing too! since we had to park high up in the parking garage (parking is never easy to find unless you are there at 8 am). On top of that, the elevator was still broken  (it was on April 20th when I went for my CT scan as well).

I like to think, at this point, that the ladies at reception at the fracture clinic know who I am. I have been seeing the same orthopedic surgeon now since the start of 2012, same hospital, same clinic, same staff, even the same day of the week (always Fridays) but then I know the staff see countless people a day. I am just a face in a sea of patients. I know this from being a cashier and making small talk with the regulars (and not so regulars), and now from my clinical experiences - as patients we only see the nurses/doctors so they play an important role in our lives, but for health care providers, the patient is still important but more from the sense of providing the best possible care, and not from forming personal relationships with them.

As usual, mum and I played the waiting game. The time you book for your appointment is not actually your appointment time, but a check in time - this gives room for the doctor to be called away for emergencies or check in on inpatients without outpatients being able to get super pissed off about "not being seen on time". Over the year I have gotten smart enough to bring water and some reading material. I pointed out to my mum, surrounded my a room full of people on crutches, with casts, etc, how ironic it was to be sitting there. Physically, it would appear that nothing is wrong with me. I could just have been a patient returning for a final checkup after a broken wrist or ankle. But my doctors and I know about the infection in my tibia and how not ok that is, how I have been dealing with this for almost a decade, how I have likely been through more than a lost of the patients in the waiting room... I said to my mum "It is wonderful to sit here and know that nobody else in the waiting area know about the infection. It is a form of anonymity".  The infection being invisible to others is both a blessing and and misfortune. On the one hand it acts as blanket, swaddling me up and helping me avoid awkward questions and people staring at me but on the other it makes it hard for people to grasp that something is actually wrong and how serious it is when I mentioned it to them.

We saw my surgeon about 1:30pm. He showed us the CT scan (couldn't see it the week before with infectious disease since the computer kept glitching). Unfortunately, I didn't get any pictures this time. From what I saw I think there are 3 small spots, or "bone defects" on my tibia. According to the surgeon, these defects are there because there has been a tiny infection smoldering away since surgery in 2012. The surgeon said they were much smaller than he was expecting, which is really good. Given that, he doesn't thing we should go ahead with the surgery. This is really confusing for me, since I have always been told that bone infections are really serious. As my infectious disease specialist says, it is not an emergency and surgery doesn't have to be done right away, but the infection does have to come out eventually. But the surgeon said that the infection isn't life or limb threatening, so we don't really have to worry about it right now. He then guided us through what surgery would entail if I would need it - 3 months between the two surgeries, and IV antibiotics through a PICC line in between the surgeries. He was unclear about this, but I am assuming they would continue after the bone graft as well. He said that he could do the surgeries if I wanted him to, but that they are medically not necessary right now. And I just sat there thinking "Huh? In February you were all for doing the surgery and I was just cleared by infectious disease to go ahead and schedule it!" The surgeon said that I seem to be doing pretty good right now, so we should hold off on the surgery. At this point my mum piped in "Of course she looks good! She has been on antibiotics for ten weeks. She is supposed to be doing good. My concern is what will happen when she stops the antibiotics." The surgeon agreed that this a valid point. He said to stay on the antibiotics for another month, as infectious disease advised, and then wait and see what happens. According to him, we should know about 2-3 weeks after stopping the Doxycycline what the infection will do. So that is the goal right now - finish the antibiotics and see what happens. He said "We will wait an see. Perhaps your body will know what to do with itself." And I though (and wisely did not say) "Bullshit. If 16 months of multiple oral antibiotics, two months of IV antibiotics, and surgery to remove the dead bone didn't fix this, and my leg still isn't better and fully healed after surgery three years ago, then three months of Doxycycline, won't do anything, especially seeing how the CT was taken and showed bone defects two months into the antibiotics." So now we wait an see, and the surgeon said he would contact infectious disease an talk with here, which infectious disease said she would do when I saw here the previous week anyways. I called infectious disease the the Monday after (May 4) and left a message, but I have not heard back, although they usually don't call back anyways. The surgeon said if, after stopping the antibiotics at the end of May, things do get worse, we cant go ahead and schedule surgery (he only has a 2-3 week wait time to get me in, so the fall would be no problem.

Meanwhile, my leg still hurts, I am still freezing cold and have chills all the time, am tired, burn easily (thanks a lot Doxy - was outside for an hour and am no beet red - this time the sunburn actually hurts!), and although the night sweats are not that sever at the moment, I am still waking up with the back of my night shirt a bit wet. Oh, and side effects from the Doxycycline. When y twelve hour clinical shifts start next week I can evaluate some more how well my leg holds up, although hope are not high since during the 6 hour shifts last semester I had quite some discomfort and classmates said I was definitely favoring my good leg.

I left the appointment feeling confused and upset. At first infections disease didn't want me to have surgery but now she does Meanwhile, the surgeon at first wanted to the surgery, but now doesn't. They have both flip flopped and propose different things... I don't know what to choose. The surgeon said he could do the surgery if I wanted, but that makes is solely my decision, and I have know clue what to do (relief for not needing to be cut open but afraid of leaving the infection inside of me), and am terrified of making the wrong choice. I cried in the car. Mum and I stopped at Gage park to see the greenhouse - I cried there too... I was a mess. I still don't know what I want to do - will see what happens in 2 1/2 weeks when antibiotics stop. I'm a little bit afraid. Leg still hurts - today was definitely bone pain in the afternoon/early evening. But more than anything I am so over this. I just want to go to sleep and wake up without this being here.

Almost made a decision

I went out with my mum this afternoon - we drove to Niagara-on-the-Lake to see the orchards blossoming. It never gets old. Every summer it is is refreshing and magically as ever. To think that a month ago we had the last trails of snow, and now there is a sea of white snowy petals!

As expected, my face and upper chest/neck did burn. I am not sure if it is a real sunburn. I seem to get very red for a while but then it fade. Still noticeable but definitely not as bad as real sunburn. My leg continues to hurt off and on. For several hours this afternoon it felt like something was squeezing the inside of my leg very hard. There was also some stinging in one particular spot, which is known for causing problems/sinus tracts/whatever we call them at this point, over my shin, so I hope nothing comes of it. No pain this evening though, which was a nice change, I hope it stay that way tonight, as it hurt quite badly while I was trying to sleep last night. The pain always seems to be worse at night.

I am learning to be more assertive (something I have always found difficult to do). While at clinical/in school I feel like I have some authority, since I am learning skills most people don't have, I find it easy to make decisions and be assertive. I am trying to be like that when outside of school as well. I have always been afraid of hurting other people's feelings, being perceived as bossy, or making other people feel uncomfortable. I am learning, however, that it is time to stand up form and have the guts to say when I want something.

Saying what I want is important when it comes to the bone infection. I don't want to be a burden to anyone or cause any inconvenience, but at the end of the day I need to get things sorted out so that I can continue with my life without the bone infection always being at the back of my mind, popping up right when life starts gaining speed again. At the moment I am kind of at a crossroad and the decision of which way to go is up to me. I will update on the situation tomorrow (what happened May 1 when I saw my orthopedic surgeon). Deep down I know what I really want and what I think is best for me, not just physically but emotionally. Having this infection is wearing me down mentally and I really want a break from it... something that just isn't there to take at the moment. What happens when I stop the antibiotics three weeks will guide me in making a definite decision. Just a little more patience! Something I used to have so much of but now seems rare and short lived.

Not a Post

Home for the weekend. Sunburn on my face and upper chest, not from being outside but sitting in the car, with my wide brimmed sunhat on... Thanks a lot doxycycline! Apparently sitting in a car can turn my into a beet. Mum and I stopped at Ikea to get a Billy book case so that I can get all my textbooks and binders of the ground. Also bought some quirky coasters with birds on them. Oh, on top of that I bought the CPNRE prep guide - instructors said we will need it by the end of the semester to start studying for our certification exam (should be May 2016!).

My post today is about not posting. I am less tired than earlier this week. Leg still feels uncomfortable but it is not as bad as yesterday so I am therefore choosing to ignore it. It has been a very good day, so I will end it on a good note without talking about the thing inside my leg that shall not be named.

Forbidden moment

Still tired today, but less so than yesterday. The pain in my leg has subsided a bit. It is not longer a strong stabbing/stinging pain but the typical dull aching "feels like something is taking a bite out of the back of my leg pain" that I have come to associate the most with the bone infection.

I didn't eat enough (I thought I had!) when I took my dose of Doxycycline tonight. I felt find at first so decided to go on a walk around the hospital/campus. It is magical there ate night - trees half in bloom, illuminated by the yellow lights places strategically along the pathways, making the bright green blossoms look like tiny stars clinging around the tree trunk. I saw three deer at the edge of campus, near one of the sports fields. I was able to inch quite close before they truly noticed me and slowly walked away. It felt like all the world was sleeping, tucked away inside for the night, and I was standing there in the peaceful, dark, calm, quiet, seeing something I normally don't - a forbidden moment. Surrounded by life and living and something science and all my education cannot explain. Walking at night not only lets me avoid sunburn from the Doxy, but stills my mind a bit, as if the bone infection doesn't matter in that moment I am walking. I also saw a racoon climb up a tree. I saw one last night as well. About the time I saw the raccoon, half way round campus, I started to feel ill - chills and nausea. I walked a little further, back to the hospital, but then had to sit down for a bit to wait for the nausea to subside. I sat and thought for a while - the irony of being a student and a patient on the same campus. How do I define myself? I feel like the relapse has made my who world about the bone infection. It is hard to put it on the back burner and continue on with life. The pain might not usually be severe, but it is there every day. How do you live with the constant reminder that something is there, is wrong, even though it is not life or limb threatening? What if the infection decides to do something else? What if it becomes worse? I will have to wait and see what happens when I stop antibiotics in three weeks, I guess... 

School is also going well. Almost done this weeks course content, and should be able to being next weeks content tomorrow afternoon  - always trying to work a week ahead.

Learning About chronic illness? More like living it...

I didn't wake up well rested like I hoped for. I woke up to my alarm at 7 am, lay down for what I thought would be five minutes, completely slept through my second alarm (no recollection of it going off at all) and slept straight til almost nine. It was an effort just to force my eyelids open and an ongoing battle to throughout the day to keep awake. I am exhausted. My whole body is tired, all the way down to my toes. I don't know how to describe it. It is worse than fatigue. It is all encompassing. That sounds dramatic, but that is not my intention. That is how it feels. It is horrible. It this the bone infection? Is this the antibiotics? Or is it both? I am eating healthy, getting enough sleep, exercising (walking every day, started doing yoga), but I am still fried.

The first class for Health and Healing 2 was this morning. The entire course is about chronic illness. The irony is not lost on me. For next weeks class the homework asks us to get a basic understanding of chronic illness and how it effects people. Our unit package asks us to consider qeustions like

"Identify the impact of a chronic health condition on a client’s life," and 

 

"What do you think would be the goals for a client with a chronic condition?"

My whole life has been impacted - always being 'the girl who is ill' in the class, taking time off for doctors appointments, scans, surgeries, being sick. Several surgeries in highschool/university. Not playing sports because of the infection. Always being tired - not having energy to hang out with friends, to get boyfriends and go to parties and weekends out. Balancing school and being ill, getting through the ill and not having energy for  anything else. Not planning for the future. And then recovering and getting my life back, being so happy and confident and excited, not only dreaming but planning. Doing! But then relapse happened, and going back to the way it used to be...   Goals are not marriage or vacations or careers. They are waking up feeling rested, not hurting, getting better. And fortunately I still have school. I can still do that and I love it.

We will be out into groups to share our answers. I don't want to share my experiences - they are personal and painful. I don't want to hear what other students say - invincible, impervious to the world of chronic illness. They are healthy. They are outsiders. They do not belong. That is not true. Just like me, they are nursing students. They need to learn about this in order to become good nurses. But they are still young and, at times, insensitive. 

This is another thing we need to discuss in our groups: 

"Imagine that you have just been diagnosed with a chronic illness, at your age and time in your life. Discuss the following in your group: how do you think that you would feel? How do you think that your life would change from what it is now? What goals do you feel would be important to you, when having to live with a chronic, serious illness?"

I don't have to imagine any of it. I am living it right now. I am sad, angry, confused. I am afraid for the future and the unknown, for knowing that my doctors don't know exactly how to treat this damn thing. That there haven't been any advances in treatment in, as my orthopedic surgeon says, a century. I am afraid because, since I replaced after my doctors where so confident that they got the damn infection out last time, what are the chances that I will replace again? I am angry that I will never be "cured" - the best I can hope for is remission (vs. active disease).  I am angry that I have been through so much already yet am still willing to go through more pain and uncertainty to try to get better. It is like gambling with what you already have for the hope that they, doctors, can make it better, but it can end up worse as well... I know what it means to want something you don't actually want, something that everything in your body screams against, in order to try to get better. I am afraid of pain. I am afraid of leaving the infection inside of me. Ambivalence - I want different things that contradict each other. I don't want anything other than for this to be over. I feel old, that I have gone through more than I should in my years but there is still more to come. I am lonely. I can't fit in anymore. Not really. All the trivial fun youthful things I missed out on. How can I go back to those things when I have had to take responsibility and be brave and strong and patient and sacrifice because I am ill. I am walking this alone. My peers don't understand. They smile and they nod, but they don't get it. They can't get it. They have not been through this. I am happy for them - they are healthy, they have what they should! I don't begrudge them that, but at the same time I am jealous. So so so jealous. How can I every explain all this to them?

One of the readings for the class was "But you don't look sick: The spoon theory" by Christine Miserandino. She described how a friend asked here how she felt being ill and thinking how she could possibly ever explain it to somebody else when she she had never been able to explain it to herself. That is exactly how chronic illness it. Unless you have been there, you don't get it. My mum has been saying that lately too. She says she goes through part of the illness with me, and is there for support, and is affected herself by the infection, that in a way that family is ill as well, but at the end of the day it affects me the most and she can't entirely understand it because she is not the one who is ill. And then you get that one person who cheerfully tells me "Well, young people who have witnessed a sick grandparent kind would understand!" as if they are berating me for saying that this is a highly personal experience that is hard to explain and for others to understand. But having a sick grandparent when you are a young child or even a young adult and only seeing the ill person once in a while is not the same as what the ill person goes through, what their immediate family who is directly involved goes through, what the doctors go through, etc. 

So how can I sit there is a class and tell my peers my very very personal experiences that I have not even come to terms with yet and expect them to understand. On the other hand, I can't not sit there and say nothing. I remember how we discussed palliative care at the end of semester one and had to consider how we would interact, as home care nurses, with a depressed, terminally ill mother of a teenager and younger child whose father was constantly away for work. One of my classmate said "I would tell her, in nicer words of course, to suck it up because there are other people who have it worse". I was shocked and saddened by the insensitivity of some of my classmates. And it makes me wonder, how will they respond to the topic of chronic illness? How will they respond to me if I tell them what I am going through?

It is time for bed now, I think. I have almost fallen asleep several times, head in my hands or on my desk, as I type this out. I am tired and upset and a bit antsy. On a side notes I went wrote the first quiz for lab today (about respiratory problems and oxygen administration). I got 100%!!! Then I went on a walk late at night, when I can't burn due to the doxycycline. I got fries almost feel asleep eating them - took everything to stay away in the restaurant. Then I walked around campus/the children's hospital. Campus is beautiful and quite, a different world at night. And the moon was glowing - deep orange. Gold int he sky. It made everything feel a little bit ok.

Back to school

Classes started today. I am now officially no longer one of those clueless first semester nursing students, incredibly proud to have a uniform and nursing paraphernalia like blood pressure cuff, stethoscope, pocket thingy to keep my many pens and pencils organized in the numerous over sized pockets of my scrub pants and one of those cool little pen lights you always see doctors shining in peoples eyes on Grey's Anatomy, yet utterly lacking in nursing knowledge. I now have some actual skills and have been deemed proficient enough, along with my classmates, to move onto second semester (and to start placement in a hospital... with actual sick people - a big improvement from working with dummies in the mock hospital ward - next week)! As one of my friends in the program and I have joked, we are no longer baby nurses. We are now toddlers allowed to roam free on the inpatient wards. Just kidding - I am sure the staff we work with will keep a tight rein on us.

It was wonderful to see all of my classmate after our two week hiatus, but it was difficult to tell people about my leg and the appointments I had over the break. I only told two people. While they are supportive, and I am really appreciative of that, they don't understand the situation or grasp what it means for me. I can't blame them for that - they have not gone through chronic illness and relapse. But I still feel alone, and at the end of the day being surrounded by friends does not completely take away from that. I think it is time to talk to the school counselor. The irony of being ill while learning to care for ill people is not lost on me. On the one hand, my experiences will help me become a better nurse, but on the other, I need to make sure to take care of me first.

I did call my infectious disease specialist today, and left a message informing her of what is going on. Hopefully I hear back from her office this week. Regardless of what she says, though, I am going to focus on my school work. I am very excited about this semester, and don't want the bone infection to steal more from me than it already has.

It is time for bed now. I have been sleeping horribly since mid last week, and while my leg hasn't been hurting badly, it has been feeling quite uncomfortable. Hope for sunshine and feeling better rested tomorrow.