Showing posts with label Bone infections. Show all posts
Showing posts with label Bone infections. Show all posts
Wednesday, April 18, 2012
Go time! (unnatural at 5 am BTW)
Leaving for the hospital in a few minutes. I hardly slept a wink! Although I think everything that will happen today has finally sunken in. I am surprisingly calm, and even felt up to cleaning my guinea pig's cage one last time so it is clean for my mom! No more waiting for me. Wish me luck =)
Tuesday, April 10, 2012
Waiting with Plutarch and Suetonius
Waiting. Waiting is fun when you have to read Plutarch and Suetonius. Throw a bit of Appian in the mix and your golden! Except when you have to write an essay when your are done reading, and I really don't want to write this essay. It is about the Triumphs of Julius Caesar, and the reading is really quite interesting, but I still can't motivate myself to write. The thing is, this essay was due on February 17th. Ya, I know... this is majorly over do. The wonder of having a bone infection is that you always feel like you have been smooshed by a piano falling from the umptenth floor, which means that you get all the extensions for university assignments that your little heart could ever desire. The goal is that you will feel better several weeks after the assignments is due, and then write it so it is over and done with. But if things don't go the way you want them to, as is what happened to me, you don't feel better. It's not that you don't intend to write the essay, because for all intensive purposes that desire is there, but on the odd occasion were you do feel semi-good, you get so excited that you go and do something that actually is fun. But now I am stuck. Classes have ended and the end of the term is speeding towards me like a run away freight train , and I have to write this paper while surgery is looming ahead of me. I don't really want surgery, I don't think anyone does, but I know that I need it which makes me kind of want it, if that makes any sense. However, to get to surgery I have to write this essay, and I really think essays are to much of a bother to give any attention to. I am also stuck in anther as aspect. I am a good student, And excellent student. My marks are to die for. Literally, they are that good. But I have this horrible fear of failure. If I don't write the essay, I will fail but I will fail because I couldn't be bothered to complete the assignment. Vs. If I do complete the assignment there is the possibility of failure. The kicker is that if you follow the instructions there is no way to get below 70%. The whole thing is in my head! But I digress.
The main point of this post was to describe what will happen during surgery. Its really straightforward in my opinion. From what I was told, the surgeon will open part of previous incision site. He will use x rays during surgery and my latest MRI and CT scans to determine were the dead bone is, and take it, along with any suspicious looking tissue out. He will keep his fingers crossed that the bone doesn't break. If it does, things turn in a whole new direction e.g. external fixation, so I am really hoping that doesn't happen. The dilemma is as followed: the surgeon has to take out all of the dead bone, and by that I mean all, otherwise the infection won't go away. In order to do so, he also needs to take out a bit extra to create what he calls a "bleeding bone'. This means that the living bone is 'exposed'. The bone will think it needs to heal itself, so will fill in the space left by the bone taken out. It also means that the IV antibiotics will reach the necessary places. As the surgeon said "The goal is to kill the infection from both ends - with the patch in the leg, and through the IV antibiotics. The tricky part is knowing how much bone to take out. Take out to little and the dead stuff will be left behind which means I won't get better, but take out to much and the bone breaks. I won't know the results until after I wake up in the post-op recovery room. After all the dead bone and tissue is gone, the surgeon will put in an antibiotic patch, which will dissolve on its own over the course of several weeks, and then close me back up. If all goes as planned I will do six weeks of IV antibiotics and then maybe a few months of oral antibiotics, and the bone will regrow and all will be done with.
I was a bit bummed out this morning, when I woke up at five am to get a glass of water. I kept thinking, if surgery hadn't been rescheduled, I would have been in the car on the way to the hospital by now. I was joking about all the medical stuff with my mom earlier this afternoon. I said that if I was awaiting something fun, like going to an amusement park or on holiday, waiting a week would not be so bad. I would have another week to anticipate all the fun things I would do. But with surgery, it is about getting it over as soon as possible for me. Although it is an interesting experience, I could really do without it. Hopefully the time in between now and the 18th flies by quickly, not that time ever changes, cause, you know, its time! I can't wait to get on with my life once all of this is over in a few months =)
The main point of this post was to describe what will happen during surgery. Its really straightforward in my opinion. From what I was told, the surgeon will open part of previous incision site. He will use x rays during surgery and my latest MRI and CT scans to determine were the dead bone is, and take it, along with any suspicious looking tissue out. He will keep his fingers crossed that the bone doesn't break. If it does, things turn in a whole new direction e.g. external fixation, so I am really hoping that doesn't happen. The dilemma is as followed: the surgeon has to take out all of the dead bone, and by that I mean all, otherwise the infection won't go away. In order to do so, he also needs to take out a bit extra to create what he calls a "bleeding bone'. This means that the living bone is 'exposed'. The bone will think it needs to heal itself, so will fill in the space left by the bone taken out. It also means that the IV antibiotics will reach the necessary places. As the surgeon said "The goal is to kill the infection from both ends - with the patch in the leg, and through the IV antibiotics. The tricky part is knowing how much bone to take out. Take out to little and the dead stuff will be left behind which means I won't get better, but take out to much and the bone breaks. I won't know the results until after I wake up in the post-op recovery room. After all the dead bone and tissue is gone, the surgeon will put in an antibiotic patch, which will dissolve on its own over the course of several weeks, and then close me back up. If all goes as planned I will do six weeks of IV antibiotics and then maybe a few months of oral antibiotics, and the bone will regrow and all will be done with.
I was a bit bummed out this morning, when I woke up at five am to get a glass of water. I kept thinking, if surgery hadn't been rescheduled, I would have been in the car on the way to the hospital by now. I was joking about all the medical stuff with my mom earlier this afternoon. I said that if I was awaiting something fun, like going to an amusement park or on holiday, waiting a week would not be so bad. I would have another week to anticipate all the fun things I would do. But with surgery, it is about getting it over as soon as possible for me. Although it is an interesting experience, I could really do without it. Hopefully the time in between now and the 18th flies by quickly, not that time ever changes, cause, you know, its time! I can't wait to get on with my life once all of this is over in a few months =)
Saturday, March 31, 2012
All around hectic-ness at an end for now!
School has gotten in the way of updating this blog, along with what feels like a gazillion different hospital appointments.
On March 21 I went for the CT scan. The hospital staff were super friendly for all of the 10 minutes the scan took.The staff are always so kind... it definitely pays to drive the hour to get to the hospital!
The day after, Thursday, I saw my infectious disease specialist. She explained the PICC line to me.She would like to have me on one IV antibiotics and one oral antibiotic, but what I will be on really depends on what the samples taken in surgery grow. If I am lucky I won't need an IV pump thing; the home nurse I am getting, or I myself, will inject a syringe of antibiotics into the line at a specific time every day. She joked with my mom and I about how one of her younger patients lost his PICC line one. A little boy as climbing a tree and the PICC line got caught on a branch. When the little boy fell out of the tree, the line was left hanging from the branch! Moral of the story... stay away from trees until the line comes out.
And last week Friday -March 23- I met with my orthopedic surgeon and (insert drum roll here) was told that my surgery is on April 10 at 8am! Hurray! The day I have spent the last 8 1/2 months waiting for is almost here! The surgeon was really helpful explaining the CT results, but all in all the three minute appointment was not worth the 100 minute wait. My appointment was at 12:45pm, but I was not seen until almost 2:30pm. the doctor was so overworked... but atleast I got the surgery date and some basic information!
Last Thursday -March 29- I had my pre-op appointment. The form I got when I saw the ortho the week before said that I should be prepared to be at the hospital for up to three hours. I thought that was a joke but brought a book (The Hobbit) just in case. At the hospital in the city I live in, pre-op was done in the office of the surgeon, by the surgeon, 3 days before surgery. But in the city I now got to all of the hospitals are working together. They are also all teaching hospital, which is why they are so great! N matter which hospital you will have surgery at, all the pre-op is done at one site in an area specially designed for pre-op. When you get to the pre-op area you check in with a nurse who then send you down a hallway to a large station were the nurses get all there information from. This is an area in the middle of a giant room with smaller rooms all around it, and with different area partly walled off to create different areas. when you arrive there, the nurses give you a "passport" for the day. It is a red card with 9 columns and two rows. Each box on the right has a different set of procedures on it, and the nurses check the bow to the left of each procedure which you need. You cannot leave until all the x's have check mark beside them. So I wait in the waiting area for a while, having a blast people watching, until I am called back. The first two things on my list are done quickly -height, weight, blood work, and EKG. Then I am sent to a second waiting area withing the big room with little rooms around it. This is really smartly done. It makes people feel that they have gotten something done, and breaks up the waiting so that people do not get to antsy. Great psychological trick! While there, I overheard a man speak to his wife about the Dulcolax (like a laxative). That conversation probably made the whole appointment worth it. He also kept losing his "passport".After waiting for what seemed like forever but was really only just over an hour, it was my time to see the RN. I feel that I was really lucky. out of the nine possible (groups of) procedure, I only needed three, the three that every body needs to have done 1)height and weight, 2)blood work and EKG, 3) and see the RN. I finished my appointment (scheduled for 2:00pm) at 4:20pm. Yay! for only 2 1/2 hours. When your name is finally called you feel like you win the lottery! The lottery of doom. Haha. Nobody really wants to be at pre-op because it means that they are having surgery... they NEED surgery, but at least the nurses are 100% nice. At 4:00 I heard one tell her colleague that they still have 30 more patients to get through. Bless them, they work so hard.
And there you go. Updates on all of my previous appointments. People my complain about the health care service provided in Canada, but depending on which hospital you go to you get treated really well. Even in my home city the nurses are amazing... it is just that the many of the doctors have god-complexes, the the budget seems to cut out things like even basic cleaning. I am on my fourth orthopedic surgeon, and I am very pleased with him. The way he addresses me, as if I can understand what he says, makes me confident in his surgical abilities and the outcome of the surgery. Now I just have to wait until surgery, April 10. Only ten more days!
On March 21 I went for the CT scan. The hospital staff were super friendly for all of the 10 minutes the scan took.The staff are always so kind... it definitely pays to drive the hour to get to the hospital!
The day after, Thursday, I saw my infectious disease specialist. She explained the PICC line to me.She would like to have me on one IV antibiotics and one oral antibiotic, but what I will be on really depends on what the samples taken in surgery grow. If I am lucky I won't need an IV pump thing; the home nurse I am getting, or I myself, will inject a syringe of antibiotics into the line at a specific time every day. She joked with my mom and I about how one of her younger patients lost his PICC line one. A little boy as climbing a tree and the PICC line got caught on a branch. When the little boy fell out of the tree, the line was left hanging from the branch! Moral of the story... stay away from trees until the line comes out.
And last week Friday -March 23- I met with my orthopedic surgeon and (insert drum roll here) was told that my surgery is on April 10 at 8am! Hurray! The day I have spent the last 8 1/2 months waiting for is almost here! The surgeon was really helpful explaining the CT results, but all in all the three minute appointment was not worth the 100 minute wait. My appointment was at 12:45pm, but I was not seen until almost 2:30pm. the doctor was so overworked... but atleast I got the surgery date and some basic information!
Last Thursday -March 29- I had my pre-op appointment. The form I got when I saw the ortho the week before said that I should be prepared to be at the hospital for up to three hours. I thought that was a joke but brought a book (The Hobbit) just in case. At the hospital in the city I live in, pre-op was done in the office of the surgeon, by the surgeon, 3 days before surgery. But in the city I now got to all of the hospitals are working together. They are also all teaching hospital, which is why they are so great! N matter which hospital you will have surgery at, all the pre-op is done at one site in an area specially designed for pre-op. When you get to the pre-op area you check in with a nurse who then send you down a hallway to a large station were the nurses get all there information from. This is an area in the middle of a giant room with smaller rooms all around it, and with different area partly walled off to create different areas. when you arrive there, the nurses give you a "passport" for the day. It is a red card with 9 columns and two rows. Each box on the right has a different set of procedures on it, and the nurses check the bow to the left of each procedure which you need. You cannot leave until all the x's have check mark beside them. So I wait in the waiting area for a while, having a blast people watching, until I am called back. The first two things on my list are done quickly -height, weight, blood work, and EKG. Then I am sent to a second waiting area withing the big room with little rooms around it. This is really smartly done. It makes people feel that they have gotten something done, and breaks up the waiting so that people do not get to antsy. Great psychological trick! While there, I overheard a man speak to his wife about the Dulcolax (like a laxative). That conversation probably made the whole appointment worth it. He also kept losing his "passport".After waiting for what seemed like forever but was really only just over an hour, it was my time to see the RN. I feel that I was really lucky. out of the nine possible (groups of) procedure, I only needed three, the three that every body needs to have done 1)height and weight, 2)blood work and EKG, 3) and see the RN. I finished my appointment (scheduled for 2:00pm) at 4:20pm. Yay! for only 2 1/2 hours. When your name is finally called you feel like you win the lottery! The lottery of doom. Haha. Nobody really wants to be at pre-op because it means that they are having surgery... they NEED surgery, but at least the nurses are 100% nice. At 4:00 I heard one tell her colleague that they still have 30 more patients to get through. Bless them, they work so hard.
And there you go. Updates on all of my previous appointments. People my complain about the health care service provided in Canada, but depending on which hospital you go to you get treated really well. Even in my home city the nurses are amazing... it is just that the many of the doctors have god-complexes, the the budget seems to cut out things like even basic cleaning. I am on my fourth orthopedic surgeon, and I am very pleased with him. The way he addresses me, as if I can understand what he says, makes me confident in his surgical abilities and the outcome of the surgery. Now I just have to wait until surgery, April 10. Only ten more days!
Tuesday, March 06, 2012
Brave? Not so much.
Brave - "To face or endure with courage." Merriam-Webster's Collegiate Dictionary.
My mother tells me that I am brave. I do not believe her. I am not brave; I do not face the world with courage. I wake up every morning and get on with my life. I take the bus, I go to school, I borrow library books, and I listen to CBC radio one. I do what I do because I have to, and nothing more. No. I do not do courage because I am just like you. I am a person and I have a life, a need to eat, sleep, breath; hopes, dreams, longings, and fears. I am normal. But, I am ill, and you are not. That does not make me courageous. Being ill does not make a person brave, it does not magically give them compassion and understanding. Those traits were already there, within me, but I was never brave. What is it that has changed in me that would make me courageous? Surely it is not the dead bone in my leg...? the abscess? the puss pockets? the pain?
I keep living. Life goes on despite one's trepidations. I have to keep up; you cannot fall behind. The slow an steady turtle never really wins. The pain will continue, the puss will break through the skin, the dead bone will not dissolve. Fact - without treatment, osteomyelitis can be fatal. I do not get to choose what I want for my body. Even though I will endure treatment, I do not do so willingly. The fact of the matter is that it needs to be done. How is that courage when I have no choice? How can I be courageous when I am afraid? I do not know... but I like my definition of brave better.
Brave - accepting that you are afraid and still completing the task at hand, even without courage. Doing something because it is required of you, even if you cry through the entire ordeal. Not facing something, but merely going through life, continuing to be, just like healthy people. Otherwise, anyone who is ill is automatically brave and courageous... I do not believe that.
Life must go on. Nothing more.
My mother tells me that I am brave. I do not believe her. I am not brave; I do not face the world with courage. I wake up every morning and get on with my life. I take the bus, I go to school, I borrow library books, and I listen to CBC radio one. I do what I do because I have to, and nothing more. No. I do not do courage because I am just like you. I am a person and I have a life, a need to eat, sleep, breath; hopes, dreams, longings, and fears. I am normal. But, I am ill, and you are not. That does not make me courageous. Being ill does not make a person brave, it does not magically give them compassion and understanding. Those traits were already there, within me, but I was never brave. What is it that has changed in me that would make me courageous? Surely it is not the dead bone in my leg...? the abscess? the puss pockets? the pain?
I keep living. Life goes on despite one's trepidations. I have to keep up; you cannot fall behind. The slow an steady turtle never really wins. The pain will continue, the puss will break through the skin, the dead bone will not dissolve. Fact - without treatment, osteomyelitis can be fatal. I do not get to choose what I want for my body. Even though I will endure treatment, I do not do so willingly. The fact of the matter is that it needs to be done. How is that courage when I have no choice? How can I be courageous when I am afraid? I do not know... but I like my definition of brave better.
Brave - accepting that you are afraid and still completing the task at hand, even without courage. Doing something because it is required of you, even if you cry through the entire ordeal. Not facing something, but merely going through life, continuing to be, just like healthy people. Otherwise, anyone who is ill is automatically brave and courageous... I do not believe that.
Life must go on. Nothing more.
Thursday, February 23, 2012
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!
Wednesday, February 15, 2012
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.
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.
Saturday, February 11, 2012
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.
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.
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| 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. |
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| 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!" |
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| 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. |
Wednesday, November 30, 2011
The Patience of a Patient
Having a chronic illness means that I do a lot of waiting. Waiting to feel better after long periods of feeling ill, waiting for pain to go away, waiting in line to fill prescriptions (and then having to go back when I count the pills at home and realize I didn't get enough), waiting for blood tests and MRIs, and most importantly waiting for the results of my latest scans.
Many of my friends and family members tell me that I must have a lot of patience, especially to get through the last few years without depression. Often people tell my how calm I appear in the face of my illness. Indeed I do not often vocalize my frustration for having to wait. It would thus be completely correct for people to comment on how I deal with my chronic disease in relation to others who are often either very curious or very ignorant and arrogant. But on the inside I am anything but patient. For example, between my latest MRI and getting the results on December 8 I have a ten day wait. On the inside the butterflies have formed a tornado in my stomach. I am silently freaking out because the results I am waiting for will determine how I will proceed with treatment, yet my friends can not see the worry I try so hard to keep from them. This illness affects enough of my life. Why should I let it control the social life which I hardly enjoy anymore because I am often to tired to get out? In the end I survive the wait not because I want to or because I am patient enough to do so but because there is nothing else I can do. It's not as if I have a time turner like Hermione Granger and can magically jump forwards ten days. Just because I wait doesn't mean I want to.
The patience of other people is something that sometimes really bothers me. Having to explain to people what a bone infection is can be infuriating because they might not grasp how debilitating a chronic illness can be. In the summer I went to a party and a friend asked me how I was faring. I answered truthfully, that I was doing badly. His response "Still?" People assume that because I am being treated that I am going to get better quickly while the reality of it is that the longer you have a chronic bone infection the harder (and more time consuming) it is to get rid of. There have been people who simply refuse to believe that I am ill. At times I feel that many people in my community seem to think that if a person does not have cancer or some other very well know illness that whatever they do have is not serious. I have had fellow students and doctors tell me that I am faking everything to get attention (not that you can fake pus draining from your leg) and TAs role their eyes when I ask for extensions. People often assume that being ill means being in the hospital attached to IVs, monitors, and a million other things while being examined by doctors round the clock, but their are legions of people who walk in crowds everyday who are chronically ill. Nobody realizes it because very few people talk about it. The subject is almost taboo. Yet when you look closely you can tell who has the tell tale moons under their eyes, ghostly pallor, and gaunt cheeks. With other people it is impossible to tell from their physical appearance. It is hard to watch your friends and fellow students progress with there lives and make plans for the future while you are stuck at home, waiting for doctors appointments and unable to plan anything major because you never know how you will feel. It is especially disheartening when your friends include you in an activity yet speed up to the point were you lag behind and then berate you for being slow. Because the bone infection is in my leg I can not walk very fast but I assure you that if you slow down for me we can still have fun together. My point is that chronic illnesses can manifest in different ways. When people are unwilling to be patient with me it hurts because I feel that I am not longer seen as a worthwhile member of society while I have so much love and care and kindness to give. If only people would talk about it...
I get angry with people who try to help. Foolish isn't it? People go out of there way to be kind to me and I thank them while on the inside I seeth at their audacity. It is not that the help offered isn't appreciated but when people who have never had a serious health crisis offer help it is hard for them to give the kind of help I need. I can not blame these people. I almost envy them for being so naive and ignorant about chronic illnesses. They go about their lives feeling good (physically and mentally) for helping others while I feel shitty for not appreciating them. I have friends who want something to be wrong with them so that they are interesting and get attention but I hate it. I want people to ask me how I am so that I can tell them about all the cool things I get to do and let them hear the music I learned to play on my piano and even tell them about the books I have read. I want to be normal and not have people ask me how I am as a way to inquire about my health. I don't want help because it reminds me of how ill I so often feel.
I am not a very patient patient. I get upset with arrogant doctors who clearly know nothing about chronic osteomyelitis.Yet I do feel that having learned to distract myself with fun things is part of becoming patient, as well as resolving the anger I feel towards being ill. Who or what am I angry at? I am not sure.. maybe just the universe for the lot I got in life. I might never get rid of this infection but if I can accept that and am ok with continuing some form of treatment for the rest of my life which keeps my were I am at right now I think that I would be able to accept that. Maybe acceptance is what patience is?
Many of my friends and family members tell me that I must have a lot of patience, especially to get through the last few years without depression. Often people tell my how calm I appear in the face of my illness. Indeed I do not often vocalize my frustration for having to wait. It would thus be completely correct for people to comment on how I deal with my chronic disease in relation to others who are often either very curious or very ignorant and arrogant. But on the inside I am anything but patient. For example, between my latest MRI and getting the results on December 8 I have a ten day wait. On the inside the butterflies have formed a tornado in my stomach. I am silently freaking out because the results I am waiting for will determine how I will proceed with treatment, yet my friends can not see the worry I try so hard to keep from them. This illness affects enough of my life. Why should I let it control the social life which I hardly enjoy anymore because I am often to tired to get out? In the end I survive the wait not because I want to or because I am patient enough to do so but because there is nothing else I can do. It's not as if I have a time turner like Hermione Granger and can magically jump forwards ten days. Just because I wait doesn't mean I want to.
The patience of other people is something that sometimes really bothers me. Having to explain to people what a bone infection is can be infuriating because they might not grasp how debilitating a chronic illness can be. In the summer I went to a party and a friend asked me how I was faring. I answered truthfully, that I was doing badly. His response "Still?" People assume that because I am being treated that I am going to get better quickly while the reality of it is that the longer you have a chronic bone infection the harder (and more time consuming) it is to get rid of. There have been people who simply refuse to believe that I am ill. At times I feel that many people in my community seem to think that if a person does not have cancer or some other very well know illness that whatever they do have is not serious. I have had fellow students and doctors tell me that I am faking everything to get attention (not that you can fake pus draining from your leg) and TAs role their eyes when I ask for extensions. People often assume that being ill means being in the hospital attached to IVs, monitors, and a million other things while being examined by doctors round the clock, but their are legions of people who walk in crowds everyday who are chronically ill. Nobody realizes it because very few people talk about it. The subject is almost taboo. Yet when you look closely you can tell who has the tell tale moons under their eyes, ghostly pallor, and gaunt cheeks. With other people it is impossible to tell from their physical appearance. It is hard to watch your friends and fellow students progress with there lives and make plans for the future while you are stuck at home, waiting for doctors appointments and unable to plan anything major because you never know how you will feel. It is especially disheartening when your friends include you in an activity yet speed up to the point were you lag behind and then berate you for being slow. Because the bone infection is in my leg I can not walk very fast but I assure you that if you slow down for me we can still have fun together. My point is that chronic illnesses can manifest in different ways. When people are unwilling to be patient with me it hurts because I feel that I am not longer seen as a worthwhile member of society while I have so much love and care and kindness to give. If only people would talk about it...
I get angry with people who try to help. Foolish isn't it? People go out of there way to be kind to me and I thank them while on the inside I seeth at their audacity. It is not that the help offered isn't appreciated but when people who have never had a serious health crisis offer help it is hard for them to give the kind of help I need. I can not blame these people. I almost envy them for being so naive and ignorant about chronic illnesses. They go about their lives feeling good (physically and mentally) for helping others while I feel shitty for not appreciating them. I have friends who want something to be wrong with them so that they are interesting and get attention but I hate it. I want people to ask me how I am so that I can tell them about all the cool things I get to do and let them hear the music I learned to play on my piano and even tell them about the books I have read. I want to be normal and not have people ask me how I am as a way to inquire about my health. I don't want help because it reminds me of how ill I so often feel.
I am not a very patient patient. I get upset with arrogant doctors who clearly know nothing about chronic osteomyelitis.Yet I do feel that having learned to distract myself with fun things is part of becoming patient, as well as resolving the anger I feel towards being ill. Who or what am I angry at? I am not sure.. maybe just the universe for the lot I got in life. I might never get rid of this infection but if I can accept that and am ok with continuing some form of treatment for the rest of my life which keeps my were I am at right now I think that I would be able to accept that. Maybe acceptance is what patience is?
Tuesday, November 29, 2011
Intitial Break, Misdiagnosis, and Treatment
I am chronically ill... I think. At least, the name of what I have has the word "chronic" in it, and since I have been sick for almost six years I am 99% sure that I qualify for the occupation, one which I neither enjoy, nor one that I chose or one that I can quite or be fired from.
I have Chronic Osteomyelitis. In layman terms it is a persistent bone infection which was not treated during the acute phase. According to Wikipedia it is "an infection of the bone or bone marrow."
Way back when at the start of 2006 I broke my right tibia and fibula in a compound fracture (for those unaware of the lingo, the bone pierced the skin on my shin). For the initial recovery I spent two months in a wheelchair, then three weeks using a walker, and then almost eight months on crutches. By June 2006 my leg had failed to heal, resulting in a non union. I was sent for all sorts of tests e.g. WBC, bone scan, blood work, bone density scan, etc. The majority of these scans came up inconclusive. Red flag you say? Not according to my doctors. They ignored everything because by the time the results were in my leg had healed. Time to celebrate? to party? huzzah? It was not to be. After six month of patience and boredom my leg had healed outwards at a 16 degree angle. I was given two choices 1) have surgery to fix things immeditaly and 2) to wait until the spring to give my body time to recover, but to not be able to walk until then. I choose the first option. In October 2006 I had surgery to re-break the bone (so much for all the healing I had done), realign it, and stabilize it with a plate and screws (aka hardware). For Christmas that year my best gift was being able to ditch the crutches, if not the "Darth Vader boot".
Fast forward to spring/summer 2007. My leg was puffy, swollen, and hot. Bumps that oozed clear/tea colored liquid began to form on my shin. After three times ten days of antibiotics with recurrent symptoms I went to my doctor who promptly told my that "I can't give you antibiotics every time you have a red spot on your leg."
In April 2008 I tried out for the girls soccer team at my high school. After two days of tryouts I had a hard, shinny lump the size of an egg on my shin. Every time I would lower my leg below my heart I would feel a deep throbbing and experience pain that I had never felt before. After waiting several days I went to Prompt Care where I was told to see the orthopedic surgeon (OS) who carried out my surgery and given a prescription for antibiotics. As for the fever I had, I was told it was because I was nervous and worried. So I went to my OS who didn't seem to concerned but arranged a bone scan just in case. However, he went on vacation before the results were in. His office did call to ask if I was in an urgent situation and needed to know the results, but of course I didn't know how bad things were. Thinking the hospital would have called if things were really bad I went to camp with the army cadets for six weeks... bad decision. I went to the ER several time, ended having several courses of antibiotics, and spent the last week of camp on crutches because my leg hurt so bad. Off I went, not so merely I should add, to my orthopedic surgeon who told me that the bone scan results were inconclusive but offered to take the hardware out. Tt the start of September I had surgery. The OS had to chisel away the bone that had grown over the hardware. Six days later my leg became inflamed, pus started oozing from the incision site, and I had a deep throbbing from my toes to by thigh. "Luckily" the doctor called when I was considering going to the ER. He said that the swab sample he took during surgery came back positive. He dismissed the results, saying that the operating room had been dirty but he gave my a months worth of antibiotics "just in case".
Throughout late 2008 and early 2009 I continued to experience pain and swelling in my leg. I went back to the OS who told my since my latest x-rays looked fine I wasn't his problem anymore. That wasn't encouraging or reassuring to say the least, seeing as I had spent the entire Christmas holiday in pain.
Throughout 2009 and 2010 I continuously saw my family doctor due to pain, swelling, and general discomfort. He blamed all my symptoms on growing pain, common cold, etc. and would do nothing for me. Eventually I started believing it was all in my head but no matter how much I tried to convince myself that the pain wasn't real, it continued.
By the end of 2009, my grade eleven year in high school, I had become increasingly tired. Instead of biking thirty kilometers a day as I had the previous summers I stayed indoors most of the time, doing very little other than two short camping trips, one with friends and the other with family. By mid-grade twelve, early 2011 I was exhausted. I attributed the fatigue to working hard to gain high marks for my university application. However, the fatigue continued to worsen. I have no clue how I managed to make it though my first year of university (2010/11) with the marks that I did (think high eighties).
In February 2011 (this year) more bumps started to form on my shin. I went to my family doctor who diagnosed my with folliculitis and gave my antibiotics and cream for my shin. However, an abscess soon formed and a sliver of bone came out of my leg. My doctor did not believe my when I showed it to him but order a bone scan anyways with the promise of sending me to an infectious disease specialist (ID doctor) if the results were inconclusive or positive. Once more they were inconclusive so off I went to meet the most amazing doctor I have ever met. Not only did see take the time to listen to my but she also believed my. On July 12 I was given the results of the MRI she ordered for July 3. I was finally given a diagnosis - Chronic Osteomyelitis. I remember how happy I was that everything I had felt wasn't all in my head. the ID doctor decided to try oral antibiotics before anything more drastic was done. At first I was on Levaquin once a day and Cephalex four times a day. Levquin is a chemotherapeutic drug with dangerous side effects. It is meant to stop the bacteria from multiplying so that it will die out. One of the possible side effects is random tendon rupture. By the seventh week I could hardly walk. The muscles in my ankles were tight so when I would try to move my feet the only result was pain. I would walk around the house shuffling like a penguin because I couldn't manage more. Other symptoms I had were insomnia (ironic because I was always tired and day dreaming of sleep), massive headaches, dry mouth, and shooting pain in my wrists. Fearing that tendon rupture would soon follow I switched the Levaquin to Apo-Sulfatrim DS (double strength) aka Septra. Ironically the name reminds my of sepsis. This is the antibiotic I am on now, twice a day, along with the Cephalex four times a day. During the summer when I had just started treatment I was at my worst. I was so exhausted and my body so tired that I wasn't myself anymore. I could sit for the whole day and do absolutely nothing and still be exhausted. It was like my mind had run away from me, gone on hiatus.
Mid-September I had a second MRI which showed only minimal healing. The concern at the moment is whether or not the minimal progress I made fighting the infection was while I was on the Levaquin. I had my third MRI this past Sunday (November 27) and will get the results next week Thursday (December 8). Half way through the MRI a nurse comes into the inject my with dye for the second half of the scan. She says "That must be painful t walk on." Immediately I was alert (lying there makes you so groggy). I ask, "Is the infection still there/" and the nurse replies that it is but she cannot tell me more. I know it is foolish of me to have wished for the infection to be gone but I a girl can hope, right? Of course it is scientifically and medically for the infection to be gone as two months prior it had hardly started to heal. All the sources I have read state that the longer you have it the harder it is to get rid of, if you even can at that point. Lucky me. NOT! My ID doctor said think a year to cure it. My reasoning is that because after the first two months there was hardly nay healing that I basically started counting the time all over again. So I suppose Yay! for two months in.
Four months of antibiotics is starting to weigh me down. Hopefully there is improvement visible on my latest MRI because I would really love to avoid the dreaded PICC line which everyone I know who had or has a bone infection seems to have had. I am curius about it but not surious enough to want one.
And there it is, the story of my six year old only recently diagnosed bone infection. When I was first diagnosed I was trigger happy on Google but found there was very little available about bone infections. I hope to provide some insight for people at the start of this tedious journey as well as document my own experiences.
I have Chronic Osteomyelitis. In layman terms it is a persistent bone infection which was not treated during the acute phase. According to Wikipedia it is "an infection of the bone or bone marrow."
Way back when at the start of 2006 I broke my right tibia and fibula in a compound fracture (for those unaware of the lingo, the bone pierced the skin on my shin). For the initial recovery I spent two months in a wheelchair, then three weeks using a walker, and then almost eight months on crutches. By June 2006 my leg had failed to heal, resulting in a non union. I was sent for all sorts of tests e.g. WBC, bone scan, blood work, bone density scan, etc. The majority of these scans came up inconclusive. Red flag you say? Not according to my doctors. They ignored everything because by the time the results were in my leg had healed. Time to celebrate? to party? huzzah? It was not to be. After six month of patience and boredom my leg had healed outwards at a 16 degree angle. I was given two choices 1) have surgery to fix things immeditaly and 2) to wait until the spring to give my body time to recover, but to not be able to walk until then. I choose the first option. In October 2006 I had surgery to re-break the bone (so much for all the healing I had done), realign it, and stabilize it with a plate and screws (aka hardware). For Christmas that year my best gift was being able to ditch the crutches, if not the "Darth Vader boot".
Fast forward to spring/summer 2007. My leg was puffy, swollen, and hot. Bumps that oozed clear/tea colored liquid began to form on my shin. After three times ten days of antibiotics with recurrent symptoms I went to my doctor who promptly told my that "I can't give you antibiotics every time you have a red spot on your leg."
In April 2008 I tried out for the girls soccer team at my high school. After two days of tryouts I had a hard, shinny lump the size of an egg on my shin. Every time I would lower my leg below my heart I would feel a deep throbbing and experience pain that I had never felt before. After waiting several days I went to Prompt Care where I was told to see the orthopedic surgeon (OS) who carried out my surgery and given a prescription for antibiotics. As for the fever I had, I was told it was because I was nervous and worried. So I went to my OS who didn't seem to concerned but arranged a bone scan just in case. However, he went on vacation before the results were in. His office did call to ask if I was in an urgent situation and needed to know the results, but of course I didn't know how bad things were. Thinking the hospital would have called if things were really bad I went to camp with the army cadets for six weeks... bad decision. I went to the ER several time, ended having several courses of antibiotics, and spent the last week of camp on crutches because my leg hurt so bad. Off I went, not so merely I should add, to my orthopedic surgeon who told me that the bone scan results were inconclusive but offered to take the hardware out. Tt the start of September I had surgery. The OS had to chisel away the bone that had grown over the hardware. Six days later my leg became inflamed, pus started oozing from the incision site, and I had a deep throbbing from my toes to by thigh. "Luckily" the doctor called when I was considering going to the ER. He said that the swab sample he took during surgery came back positive. He dismissed the results, saying that the operating room had been dirty but he gave my a months worth of antibiotics "just in case".
Throughout late 2008 and early 2009 I continued to experience pain and swelling in my leg. I went back to the OS who told my since my latest x-rays looked fine I wasn't his problem anymore. That wasn't encouraging or reassuring to say the least, seeing as I had spent the entire Christmas holiday in pain.
Throughout 2009 and 2010 I continuously saw my family doctor due to pain, swelling, and general discomfort. He blamed all my symptoms on growing pain, common cold, etc. and would do nothing for me. Eventually I started believing it was all in my head but no matter how much I tried to convince myself that the pain wasn't real, it continued.
By the end of 2009, my grade eleven year in high school, I had become increasingly tired. Instead of biking thirty kilometers a day as I had the previous summers I stayed indoors most of the time, doing very little other than two short camping trips, one with friends and the other with family. By mid-grade twelve, early 2011 I was exhausted. I attributed the fatigue to working hard to gain high marks for my university application. However, the fatigue continued to worsen. I have no clue how I managed to make it though my first year of university (2010/11) with the marks that I did (think high eighties).
In February 2011 (this year) more bumps started to form on my shin. I went to my family doctor who diagnosed my with folliculitis and gave my antibiotics and cream for my shin. However, an abscess soon formed and a sliver of bone came out of my leg. My doctor did not believe my when I showed it to him but order a bone scan anyways with the promise of sending me to an infectious disease specialist (ID doctor) if the results were inconclusive or positive. Once more they were inconclusive so off I went to meet the most amazing doctor I have ever met. Not only did see take the time to listen to my but she also believed my. On July 12 I was given the results of the MRI she ordered for July 3. I was finally given a diagnosis - Chronic Osteomyelitis. I remember how happy I was that everything I had felt wasn't all in my head. the ID doctor decided to try oral antibiotics before anything more drastic was done. At first I was on Levaquin once a day and Cephalex four times a day. Levquin is a chemotherapeutic drug with dangerous side effects. It is meant to stop the bacteria from multiplying so that it will die out. One of the possible side effects is random tendon rupture. By the seventh week I could hardly walk. The muscles in my ankles were tight so when I would try to move my feet the only result was pain. I would walk around the house shuffling like a penguin because I couldn't manage more. Other symptoms I had were insomnia (ironic because I was always tired and day dreaming of sleep), massive headaches, dry mouth, and shooting pain in my wrists. Fearing that tendon rupture would soon follow I switched the Levaquin to Apo-Sulfatrim DS (double strength) aka Septra. Ironically the name reminds my of sepsis. This is the antibiotic I am on now, twice a day, along with the Cephalex four times a day. During the summer when I had just started treatment I was at my worst. I was so exhausted and my body so tired that I wasn't myself anymore. I could sit for the whole day and do absolutely nothing and still be exhausted. It was like my mind had run away from me, gone on hiatus.
Mid-September I had a second MRI which showed only minimal healing. The concern at the moment is whether or not the minimal progress I made fighting the infection was while I was on the Levaquin. I had my third MRI this past Sunday (November 27) and will get the results next week Thursday (December 8). Half way through the MRI a nurse comes into the inject my with dye for the second half of the scan. She says "That must be painful t walk on." Immediately I was alert (lying there makes you so groggy). I ask, "Is the infection still there/" and the nurse replies that it is but she cannot tell me more. I know it is foolish of me to have wished for the infection to be gone but I a girl can hope, right? Of course it is scientifically and medically for the infection to be gone as two months prior it had hardly started to heal. All the sources I have read state that the longer you have it the harder it is to get rid of, if you even can at that point. Lucky me. NOT! My ID doctor said think a year to cure it. My reasoning is that because after the first two months there was hardly nay healing that I basically started counting the time all over again. So I suppose Yay! for two months in.
Four months of antibiotics is starting to weigh me down. Hopefully there is improvement visible on my latest MRI because I would really love to avoid the dreaded PICC line which everyone I know who had or has a bone infection seems to have had. I am curius about it but not surious enough to want one.
And there it is, the story of my six year old only recently diagnosed bone infection. When I was first diagnosed I was trigger happy on Google but found there was very little available about bone infections. I hope to provide some insight for people at the start of this tedious journey as well as document my own experiences.
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