Boris the Boring

Yesterday was my six year anniversary. Me and my bone infection have been engaged in a spontaneous, undesirable, love/hate relationship for the last 2190 days. Traditionally, if I were married, I would have received sugar, candy, or iron from my spouse but, seeing as I am still lacking a man, that didn't happen. Instead, I am coupled with chronic ostoemyelitis which, for the sake of this post, will be called Boris. Boris gives me many things - bone pain, swelling, edema, pus pockets, you get the idea - but Boris does not give me what I need. Boris is holding me back. And to be frank, Boris is starting to bore me. He is unresponsive to some seriously, heavy duty antibiotics. He doesn't care how much I baby him, he just cares about hurting me. Boris hasn't understood the signals my body, and my doctors, are sending him to GTFO so now my doctors need to surgically attempt to remove him (the restraining order didn't work). So lets all keep our fingers crossed that this is the year that Boris finally receives his final eviction notice!

Like butter scraped over too much bread.

"I'm old, Gandalf. I know I don't look it, but I'm beginning to feel it is my heart. I feel... thin. Sort of stretched, like butter scraped over too much bread. I need a holiday. A very long holiday. And I don't expect I shall return. In fact I mean not to." - Bilbo Baggins, J.R.R Tolkien

I never gave this quote much thought before. It always sounded nice - just the sort of thing I would like, that I new meant more and did want to understand but I never could. But now I do. To me, my mind is young and my body feels old. Yet to everybody else my body appears young while my mind feels old, like I can not cover the distance between living in my body and my body living an entire life. I feel stretched, that I won't make it to tomorrow. I will still be here but I won't focus on the next day, or the day after, or the weeks, months, years to follow. Hell, I will be glad to look to the next hour, because my body feels old, and my mind stretched as it tries to connect my cog-spinning, gears whirring thoughts to my cold, painful, none obeying body. My cheeks are hollow, the skin on my cheeks taught from crying, my eyes rimmed by purple moons of exhaustion, mingling with my freckles, staining my paler than it usually is skin.

In a week I went from so alive to completely drained. Where did all my hard earned energy and spirit go? That which I had spent everyday of the last seven months desperately fighting to retrieve.  A mere matter of days is all it took to steal my blooming self and turn it into lethargy. I worked so hard. I fought for so long. I wanted to be better. I still went to be better... am I back to square one? Did I waste seven months popping pills, believing they would make me better? Faithfully taking the chalky white and the foul orange four times a day! Are fevers, chills, pain, red blotches that ooze fluid on my shin the reward my body gives me? I have been good to it, and it has betrayed me. Again.

The fact is, that I feel old. Frail, feeble. Weak. Whatever you do call it. That I should be able to look back at a long, long time and think "I have lived a life and now it concludes in my old age." But I do not. I can not because I am still young. But than, I still feel old. Pain is something that plays tricks on your mind. Time seems to fly when you are having fun, but it flows slow like molasses when enjoyment is not yours to have. I feel strained over time. My time takes a very long time to tick. I do not know if that is something I can describe. Only those who have felt it can understand. I feel I am stuck, my life frozen by nastiness, vile, while the world keeps moving. I can not plan, I can not do, and it makes my dreams void. I do not remember last month, nor last week. I can not remember how I felt yesterday other than that I felt drained. I am not simply tired, struck with fatigue. Every ounce of energy has left me, and I can not remember what it felt like to me, and that scares me. I want to scream for help, beg the world to restore me to my former self, but it will not. I don't want to feel like this. My mind is so keen, ready to work. I have so many wonderful thoughts left to think, and yet I can not. At times the tired makes awareness almost impossible. I could sit for hours, blankly, not thinking, just breathing. Somewhere in me I am happy, the part of me that is shielded in my heart. I love myself. I am happy to be alive. I want to be here. But my body is so done. Exhausted. how can I be so happy with the person I am, but hate what it in me? How do I fix it if get better? Will time restore me?

I do not want to die. My bone infection is not be fatal. There are treatments. But the tired always makes me fear tomorrow. Will I feel better, worse, the same? I want a holiday from my body. I will return, unlike Bilbo, but I do need a very long rest. Irony - that I sleep sixteen hours straight but it is not rest. The sleep merely perseveres me, so that I do not become more exhausted, but it never makes me feel better. It does not restore me. I want to walk away from my body like a spouse walks away from an abusive significant other, an employee leaves an unsatisfying job. I want to be me. I am still me, just different. I do not like it. I do not want time to play tricks on me. For time to tick slowly. For fear of tomorrow. I want to get better, to a better, to something that is better, but I can not remember what that feels like. Not even thickly spread butter on toast will make it happen.

Lousy Day

Miserable and wretched - exactly how I feel today. I had a massive headache when I woke up which has been persistent all day, and my leg has hurt more than usual. During Latin lecture this afternoon, a friend commented on how tired I look... so much for trying to hide it with red lipstick, funky earrings, and a bow in my hair. My mother keeps saying how glad she is that I am getting better, assuming that because I have more energy than I did several months ago that everything inside my body is going well. Her enthusiasm makes it all the harder to have to teller that the spots on my leg have started leaking fluid again. Even she can not deny that, after seven months of antibiotics, that is not normal. Maybe I just won't tell her, and let her find out when I see the ID specialist Thursday morning. I don't want to make her worry, she has enough going on in her life right now. Hopefully the ID specialist will arrange for my next MRI to be in a few weeks. On the bright side of life, I got the Latin test I wrote last Thursday back today - 84% Not my best but I will take it knowing that the class average was only 65%. I think that a nice quite evening with a big mug of tea and a good book is what is needed tonight.

It's a never ending cycle

Well, it's time to fill my little box again. AND I will get to do it all again next week, and the week after, and then the week after that and so on. How I despise that piece of plastic which has come to symbolize this horrible ongoing nightmare. All the research I have done states that bone infections can be effectively treated in six weeks... but I guess the research  doesn't account for all the poor sobs who have the chronic sort of osteomyelitis.

My apologies for this brief but much needed rant. Today I am doomed to be miserable. No matter what I do -listen to music, read a book, flip through a magazine- nothing distracts me from how wretched I feel. I just can't seem to get comfortable. My leg feels worse then usual, and I have has chills and shiver all day. I find that there is nothing worse than feeling hot and cold at the same time. Some days I am o.k. with everything, but today I am just so done with it all.

Treasure Chests

Below are some picture of my pills and pill boxes aka "treasure chests". The big black one in the image below is the one I wrote the previous post about. Before I got it, I was carrying a days worth of pills with me in the little "one up" mushroom from Mario. I thought it was a fun way to carry around something that is not so nice to take/need to take, but then a friend pointed something out to me. The Mario mushrooms come with candy inside them, so if a child is snooping in my bag and finds it, he or she might mistake my pills for candy and eat them. I take almost 4000mg of antibiotics a day... not something you want a child taking all at once. So my mum got me a pill box. At the drugstore they did have ones with seven columns and four rows, for people like me who have to take medication four times a day, but I really didn't feel the need to carry a huge box around with my everywhere I went...plus it would rattle a lot, and that would be awkward walking across campus.

The big black one is the one I use at home - I find it easier than using the bottles the pills come in, and it makes it easier to see if I have missed a dose or taken everything I needed to. I found the smaller ones yesterday at Shoppers, a pack of two for $2.99. I might go back to get another pack that has a different pattern and colour so that I can mix things up a bit.

This is what I was keeping my pills in whenever I went out at the start of the first semester, with a big note in it that said "DO NOT EAT, these are NOT candy, they are my pills!"

And these are my pills boxes together with this months pills. I have almost twenty bottles now, and want to see how many I will have to go through to get better. I purposefully didn't take a picture of the labels on the bottles because some personal and contact information is on them. The one on the left if Sulfatrim DS, aka Septra. Those ones are chalky and taste extremely bad. The bottle on the right contains Cephalex. Those pills are orange and smell like sewage.

I know that some company somewhere is making a load of money by selling funky pillboxes, but it is nice to have something that makes me smile a little every time I have to take pills. I feel so odd when I have to take pills during class time and people are staring at me as I pull out my pill box. With the little ones it is not so awkward. Sometime I feel like I am poisoning myself every time I take a pill. i know I need them to make me better, but they can make me feel so terrible and exhausted. That is another reason for why it is so nice to add a pit of 'sunshine' to the whole process. I really hope that I can avoid the PICC line.

Saturday Night Ritual

I have a little black box that goes everywhere that I do. It gets tossed in my purse and jammed in my rucksack, hassled by the water bottle I hope does not leak, and buried under textbooks, lunch, and extra socks I take with my on rainy days. Gold writing sparkles on the top, while the bottom is covered in shinny teddy bears and ladybugs. It is my little black box, and it means nothing and everything to me. I need it, yet I hate it. Perhaps need and hate are not always separable.

Every Saturday night I refill my pillbox. Faithfully I put 42 pills into it, 14 chalky white, 28 foul smelling orange. The gold writing labeling the week days and times is peeling off. The stickers are out of place. I knew when I placed theme that they did not belong on a pill box, but I stuck them on anyways, glad for anything childish and innocent surrounding the pills I take in an attempt to kill my bone infection. When I chuck it in my rucksack I am glad that it's many lids are sealed shut not because I fear a leaking water bottle ruining some trinket, but because the water would ruin a weeks worth of medication. If I get better I will by a little black treasure chest with gold corners, and keep teddy bears and ladybugs in it, but until the day that I am 'cured' arrives, I will faithfully fill my little black box with 42 pills, 14 chalky white, 28 foul smelling.

I used to love my Saturday night ritual. I thought that every week I refilled my pill box meant one week closer to being better. Once a week, every weekend, for four weeks I would put three pills into each small compartment, all fourteen of them, on the fifth weekend I would go to the pharmacy to get a refill, and every two months I would ask my infectious disease specialist for a new prescription. I thought that every week marked a milestone. My ritual excited me, it gave me control over the thing that would kill the nasty inside me which I alone could not control. But then the second MRI results showed no healing, then the thirds MRI results showed only minimal healing, and then my doctors fought over whether they should remove the dead bone or not. The year the infectious disease specialist talked about started to turn into longer, possibly two years, possibly and unknown amount of time. One week no longer counted to an ultimate goal that fit into a neat time span, it just became one more in an already endless string of week after week. Every week I wait anxiously for those ten minutes in which I filled my little box, my ten minutes in control, and then I spend the rest of the week feeling helpless and held captive by the routine of my pills, agonizing, waiting for the next Saturday night. My ritual became a sadistic one.

Sometimes I am angry with my pills. Imagine that, me being angry at a little orange tablet! Enraged that I have to take it, that my friends and classmates don't. I do not like taking my pills at the start of a class or seminar, because school interferes with my medication schedule, with every staring at me. I do not like people asking why I need pills, or people who assume that because I walk around campus that bone infections are not serious or painful. Sometimes I think of forgetting my little box at home, forgetting to take the orange and the white, and just letting the nasty win. Sometimes I think that it would be easier to just give in to something that my doctors and I might not be able to cure. I hate refills, can't stand being told every time I get more pills how to take them, feel hassled when the pharmacy has given me to few pills and I have to go back. I am disgusted that I have had so many refills that by simply looking at the bottle I can tell if there are enough pills or not. I want the little bastards to cure my in seven days like they would a UTI.

How can I be angry at something that is in me? Something I so want to rip out of my body? Throughout my life I have heard many people say how important it is to embrace who you are... Is chronic osteomyelitis part of who I am? Will I be transform me into a stronger, kinder, more compassionate and patient person once this infection is gone, or are those things I become throughout the process, not just the end product? Would I learn all those things if I didn't have something wrong with me? Or was the basis for those traits already in me, and this nasty just let them grow? I don't understand how I can be so happy with myself yet so hateful of something inside of me.

On a side note, I still act naive sometimes. I have stuck teddy bear stickers to my pill box. I have pretend conversations with my pills to amuse my mother and friends e.g.,  Me: I'm going to eat you, oh yes I am, yes I am. Pill: No, No, please don't! Sulfatrim companions, save me! NOOO! (in a squeaky voice). I am making a castle out of all the pill bottles I have - *shockingly* you collect quite a lot of them after seven months of antibiotic treatment. Like a child would, I even attempt to skip doses...although common sense always sets in - I have yet to miss a dose. My little black box has become what a blanky or favorite toy or stuffed animal is to a child. I panic if I think I have forgotten it, roughly rummaging through my bag until I find it and then cherishing it (while also hating it) even more. And I have grown a wee bit sentimental. When, not if (I know that it could be an 'if' but for the sake of my sanity lets pretend that 'if' is not an options), I am better I will buy a little black treasure chest with gold corners, and keep teddy bears inside of it.