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?
Wednesday, November 30, 2011
Shorter Version of Events
As I reread it I realize how long the first post is. For those of you who don't want to read the lengthy tale (I completely understand) here is a summarized version.
February 23 2006 Broken left ankle, broken right tibia and fibula, compound fracture. Same day, surgery to clean the open fracture
April Left ankle healed, start using a walker instead of a wheelchair
May Switch to crutches
June Non-union
Summer Multiple blood tests, WBC, Bone scan, Bone density scan, etc. results are inconclusive
August Leg healed outwards at 16 degree angle
October Surgery to re-break leg, realign, and stabilize it with hardware
December Ditch the crutches
January 2007 Ditch the "Darth Vader" boot
Summer Leg swollen, hot, painful, draining tea colored fluid - several courses of antibiotics, told the red spots on my leg mean nothing.
March/April 2008 Leg swells, hard egg shaped/sized lump forms on shin. Given antibiotics at ER and orthopedic surgeon orders bone scan
Summer at cadet camp. Several courses of antibiotics, go to ER several times, last of six week on crutches
September hardware removal
December 2008/ January 2009 Lots of pain, surgeon dismisses as "not his problem"
2009-end 2010 Family doctor tells my many times that what is happening is normal
2010 increasing fatigue/exhaustion, both mentally and physically
February 2011 bumps appear, oozing fluid, abscess forms and bone chip "sequestrum" comes out of it
June referred to infectious disease specialist, MRI ordered
July 3 MRI
July 12 diagnosis- Chronic Osteomyelitis, start oral antibiotic treatment - Levaquin and Cephalex
August switch Lavequin to Apo-sulfatrim double strength (aka Septra), continue Cephalex
September MRI, shows minimal improvement
November 27 third MRI, waiting for results on December 8
UPDATE: The results from the MRI on December 8 show only minimal healing. The ID and OS argue about surgery to remove dead bone from leg, and the resident at the hospital is absolutely useless. Plan is to wait several months before next MRI, likely end March/early April 2012. OS wants to wait 6-8 months to see if things improve on their own... and so life goes on.
February 23 2006 Broken left ankle, broken right tibia and fibula, compound fracture. Same day, surgery to clean the open fracture
April Left ankle healed, start using a walker instead of a wheelchair
May Switch to crutches
June Non-union
Summer Multiple blood tests, WBC, Bone scan, Bone density scan, etc. results are inconclusive
August Leg healed outwards at 16 degree angle
October Surgery to re-break leg, realign, and stabilize it with hardware
December Ditch the crutches
January 2007 Ditch the "Darth Vader" boot
Summer Leg swollen, hot, painful, draining tea colored fluid - several courses of antibiotics, told the red spots on my leg mean nothing.
March/April 2008 Leg swells, hard egg shaped/sized lump forms on shin. Given antibiotics at ER and orthopedic surgeon orders bone scan
Summer at cadet camp. Several courses of antibiotics, go to ER several times, last of six week on crutches
September hardware removal
December 2008/ January 2009 Lots of pain, surgeon dismisses as "not his problem"
2009-end 2010 Family doctor tells my many times that what is happening is normal
2010 increasing fatigue/exhaustion, both mentally and physically
February 2011 bumps appear, oozing fluid, abscess forms and bone chip "sequestrum" comes out of it
June referred to infectious disease specialist, MRI ordered
July 3 MRI
July 12 diagnosis- Chronic Osteomyelitis, start oral antibiotic treatment - Levaquin and Cephalex
August switch Lavequin to Apo-sulfatrim double strength (aka Septra), continue Cephalex
September MRI, shows minimal improvement
November 27 third MRI, waiting for results on December 8
UPDATE: The results from the MRI on December 8 show only minimal healing. The ID and OS argue about surgery to remove dead bone from leg, and the resident at the hospital is absolutely useless. Plan is to wait several months before next MRI, likely end March/early April 2012. OS wants to wait 6-8 months to see if things improve on their own... and so life goes on.
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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