The great wait

I just took my last dose of Septra, the antibiotic that I have been on for the last month.

For most people, this wouldn’t be a big deal. If you have been prescribed a simple seven day course of antibiotics, the only significant thing that will change in your life is that you will be rid of the inconvenience that is having to remember to take a pill once or several times a day for a week.

So why am I blogging about this? Not really a big milestone or anything, is it? A pill is a pill is a pill regardless of what it is for… nothing significant. Loads of people are prescribed antibiotics every day; it is common place.

Except it is not, or at least not for me. Other than a few days in the middle of February and a week in May that I now regret, I have been on some antibiotic or another since the 9^th of February. That is almost eight months and a hell of a lot longer than the standard seven to fourteen day course of antibiotics. After all that time, it will be lovely to no longer have to remember to take medication. But the convenience of not having to take medication is not why I am blogging.

The antibiotics I was on (Cephalexin, Doxycycline, Septra, IV Vancomycin) where prescribed to keep the bone infection under control. Without them, the infection would flare up, causing sinus tracts/sores to form on my shin, fatigue, and an increase in bone pain. When we realized that the infection was getting worse anyways, the antibiotics were there to tide me over until surgery so I could finish the semester at school. And then, most importantly I think, the antibiotics were there to mop up any infection that lingered in the soft tissue/muscle after the surgery to remove the infected section of my tibia.

In a way, the antibiotics have been a life line for the past eight months – a security net of sorts. They carried the promise that the infection could be cured or at least controlled. By taking those little pills, either chalky white, foul smelling orange, or tiny round like an m&m, or hooking myself up to the PICC line I had, I felt like I had some control over the situation. At least I was doing something.

But not anymore. I just swallowed the last pill. And now the great wait begins to see if the infection is actually really gone or if it will rear its ugly head again. I am excited and hopeful that the infection will not return. I have to be, because I need something to cling onto right now – I am missing 2.5 inches of my tibia, I can’t walk without crutches, I have bone pain, and I have placed all control in the hands of my doctors and their confidence in their ability to regrow my bone and get me walking again. I am in no man’s land right now; I can’t go back because I have no tibia, but I can’t go forward until the next surgery in 7-8 weeks. It is frustrating, the cast is uncomfortable, the ends of my tibia hurt. So I need something good to come my way, and not having symptoms reappear once I stop the antibiotics is that good thing.

On the other hand is fear and trepidation. This is the moment I have been waiting for. What will my body do? It has failed me in the past. The last time around I had every reason to believe the surgery in 2012 and the 16 months of antibiotics did their job and the infection was gone. And then it came back anyways. I am terrified of the idea that this could just keep coming back again and again, over and over for ever, or that it will never go away, not even for short periods of remission.

Swallowing this last pill today is a big deal for me. More than big. It is milestone. And now the wait begins. I think we can all agree that waiting is hard, and it is worse when you are waiting for something bad to happen. That is how I feel right now, that the infection will come back. I want so badly to be healthy, normal. I don’t have dreams of exotic vacations, an expensive new wardrobe, making lots of money, being famous. All I want is to be healthy. I do not know if I can convey the intensity of that. Yearn is a good word. My body yearns to be healthy again. I am so incredibly tired of being exhausted and feeling blah. To just wake up in the morning feeling refreshed…

I have been completely knackered the last few weeks. Things were improving after surgery, but then it is like I hit a brick wall. Living with a chronic illness is a battle. Every morning I wake up and the first thing I do is evaluate how I feel. Most days I am on the losing side of the battle. I sit up, look in the mirror, and think “Bummer, I still look horrible and I’m still exhausted”. My face looks drawn out and thin, eyes barely open. I have lost before I get out of bed. How tired I look has become a common point of conversation between my mum and I. I feel like a zombie most of the time. We are starting to get a bit concerned. We have several theories of what is causing the fatigue: my body could be trying to reject the cement spacer; I could be using up all my energy in a futile attempt to heal my leg; long terms antibiotics can cause severe fatigue; or the infection is back. My infectious disease specialist couldn’t stress enough at my last appointment on Sept. 15 to call her if we had any concerns. She said to call for even the slightest thing. Perhaps I should call her. I do see my orthopedic surgeon this Friday. I will have a good talk with him, and I am guessing he will call infectious disease while I am there because honestly, I look like crap and being this exhausted could be a sign that something is amiss.

Other the fatigue and anticipation to see what happens now that I have stopped my antibiotics, the last few days have been good. I got my hair cut last Friday. On Wednesday morning my aunt came over for a few hours. Yesterday mum and I went out to Niagara on the Lake. We actually got out of the car and walked down both sides of Main Street. My leg hurt a lot after but it was worth it. Being able to put some weight on my leg while using crutched definitely makes going out easier. Mum thought it would be a bad idea because I was so tired, but I reasoned “I am exhausted either way. I can either sit on my bed at home watching day time tv feeling tired, or go out, have some fun, and be tired anyways”. Today was a slow day. I coloured a bit in the morning, worked on my embroidery project most of the afternoon and evening, and went to a motorcycle shop in the afternoon with my brother so he could pick up his new leather chaps and jacket and I could get him a gift for Christmas (cause I am not braving the mall when I have my fixator next month). It got really cold today so I am staying toasty under a mountain of blankets, sweaters, and comfy socks. I am trying to take it easy and be kind to myself. I hope tomorrow is a better day energy wise. At least I can always sit in a comfy chair with a magazine or my embroidery. It’s the little things that count =)

My colouring. Seems appropriate given the weather =)

Where I am camped out most of the time... sea of pillow and blankets.

The last pill.

Reaching my limit

I just finished having a good long cry.
After seeing my orthopedic surgeon on May 29th I had several lovely days without night sweats, to the point I thought, hey, maybe they are over. But they weren't. Happens Three nights in a row - Wednesday,Thursday, Friday night. I was completely spent on Wednesday, followed by a very long day on Thursday (up at 4:30am to get to clinical on time, and not home back in St. Catharines until 11:00pm). Friday I was completely spent again. Saturday was still tired by a bit better. And today is completely utterly drained. So drained I don't see myself getting an assignment done and handed on time. That is not like me. I always get things done well in advance, always get top marks. I make it a point to put extra effort into my school work just so the bone infection doesn't get the best of me. But not this time. I am more than fried. My brain feels like mush, my thoughts are slow like molasses.

I mean it when I say I don't think I have felt this horrible since before I was diagnosed in 2011.

Tomorrow morning I will call infectious disease - see if she wants me back on antibiotics. I am assuming she will... so much for enjoying summer and feeling well before surgery once the semester ends. I have been having more bone pain as well, and a new small red bump had shown up on my shin. If this the result of stopping the doxycycline on the 27th? Is this what I get for pumping myself full of them for 15 weeks? Something that is supposed to make me feel better? The effect goes away almost instantly once I stop them? If this is how I feel from now until surgery, I don't know how, or if, I can manage.

So I had a good cry. I am still knackered, but I feel a tad better emotionally.
I don't like to use the word hate. It is a strong word, an ugly word. But I hate chronic osteomyelitis. An ugly word to match an ugly infection. The two fit perfectly together.

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.

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.