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.
Showing posts with label chronic. Show all posts
Showing posts with label chronic. Show all posts
Monday, February 06, 2012
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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