I just finished having a good long cry.
After seeing my orthopedic surgeon on May 29th I had several lovely days without night sweats, to the point I thought, hey, maybe they are over. But they weren't. Happens Three nights in a row - Wednesday,Thursday, Friday night. I was completely spent on Wednesday, followed by a very long day on Thursday (up at 4:30am to get to clinical on time, and not home back in St. Catharines until 11:00pm). Friday I was completely spent again. Saturday was still tired by a bit better. And today is completely utterly drained. So drained I don't see myself getting an assignment done and handed on time. That is not like me. I always get things done well in advance, always get top marks. I make it a point to put extra effort into my school work just so the bone infection doesn't get the best of me. But not this time. I am more than fried. My brain feels like mush, my thoughts are slow like molasses.
I mean it when I say I don't think I have felt this horrible since before I was diagnosed in 2011.
Tomorrow morning I will call infectious disease - see if she wants me back on antibiotics. I am assuming she will... so much for enjoying summer and feeling well before surgery once the semester ends. I have been having more bone pain as well, and a new small red bump had shown up on my shin. If this the result of stopping the doxycycline on the 27th? Is this what I get for pumping myself full of them for 15 weeks? Something that is supposed to make me feel better? The effect goes away almost instantly once I stop them? If this is how I feel from now until surgery, I don't know how, or if, I can manage.
So I had a good cry. I am still knackered, but I feel a tad better emotionally.
I don't like to use the word hate. It is a strong word, an ugly word. But I hate chronic osteomyelitis. An ugly word to match an ugly infection. The two fit perfectly together.
Showing posts with label doxycycline. Show all posts
Showing posts with label doxycycline. Show all posts
Sunday, June 07, 2015
Friday, May 08, 2015
Not a Post
Home for the weekend. Sunburn on my face and upper chest, not from being outside but sitting in the car, with my wide brimmed sunhat on... Thanks a lot doxycycline! Apparently sitting in a car can turn my into a beet. Mum and I stopped at Ikea to get a Billy book case so that I can get all my textbooks and binders of the ground. Also bought some quirky coasters with birds on them. Oh, on top of that I bought the CPNRE prep guide - instructors said we will need it by the end of the semester to start studying for our certification exam (should be May 2016!).
My post today is about not posting. I am less tired than earlier this week. Leg still feels uncomfortable but it is not as bad as yesterday so I am therefore choosing to ignore it. It has been a very good day, so I will end it on a good note without talking about the thing inside my leg that shall not be named.
My post today is about not posting. I am less tired than earlier this week. Leg still feels uncomfortable but it is not as bad as yesterday so I am therefore choosing to ignore it. It has been a very good day, so I will end it on a good note without talking about the thing inside my leg that shall not be named.
Sunday, May 03, 2015
Day thirteen
I am still not ready to talk about yesterday. Over the last twenty-four hours I have been turning the pros and cons of all of my options round and round my head, but I still have no idea what to do... =(
Above anything else, I feel deflated and defeated, like an empty balloon - all of air rushed out of me. I think for the first time, I truly believe that I might not be able to get rid of this infection. That makes me incredibly sad.
Aside from the bone infection fiasco, mum and I had a lovely day today. In the morning we went to a rummage sale as West Minster Church, where I got several lovely towels. They are white with soft pink flowers on them - a dated look. Best of all, they are brand new! Then we drove around the city to several yard sale. Mum got an adorable terracotta hen for the yard. Then we went home for tea and breakfast, followed by a leisurely drive to Niagara-on-the-Lake. I bought a hat at one of the stores, and it came in a hat box! I have always wanted to have a hat box!!! I felt quite fancy walking down main street with it. it is wicker and warm yellow fabric, like the sun. It will do well keeping me from burning this summer due to doxycycline. In the afternoon I began working on course content for the new semester, and then slept from about four to nine thirty. I was freezing cold and too tired to stay up. I am not just finishing a cup of tea and a last load of laundry. Tomorrow I go grocery shopping, finish packing my clothes and toiletries, and then move back to Hamilton.
Above anything else, I feel deflated and defeated, like an empty balloon - all of air rushed out of me. I think for the first time, I truly believe that I might not be able to get rid of this infection. That makes me incredibly sad.
Aside from the bone infection fiasco, mum and I had a lovely day today. In the morning we went to a rummage sale as West Minster Church, where I got several lovely towels. They are white with soft pink flowers on them - a dated look. Best of all, they are brand new! Then we drove around the city to several yard sale. Mum got an adorable terracotta hen for the yard. Then we went home for tea and breakfast, followed by a leisurely drive to Niagara-on-the-Lake. I bought a hat at one of the stores, and it came in a hat box! I have always wanted to have a hat box!!! I felt quite fancy walking down main street with it. it is wicker and warm yellow fabric, like the sun. It will do well keeping me from burning this summer due to doxycycline. In the afternoon I began working on course content for the new semester, and then slept from about four to nine thirty. I was freezing cold and too tired to stay up. I am not just finishing a cup of tea and a last load of laundry. Tomorrow I go grocery shopping, finish packing my clothes and toiletries, and then move back to Hamilton.
Friday, April 24, 2015
Four months for intermission
I had the appointment with my infectious disease specialist this morning.
I am so fortunate to have my mum with me for most of my appointments - I freeze when I see my doctors. Half their words fly over my head while the remainder swirl round my brain, leaving me muddled and confused. Being a nursing student and learning how hospitals and therapeutic nurse-client relationships function has not helped this. My mum is there to ask the questions I forget, or the ones I purposefully don't bring up because I don't want to know the answers.
We talked about several things:
Bone pain and discomfort (not to bad at the moment although it was pretty bad last week) - might cause some issues when my 12 hour clinical shifts start next month. Will have to see how it goes.
Night sweats - ID specialist said that they can occur with chronic infection, but doctors do not have an explanation for why. This doesn't help me. I am waking up drenched in sweat several times a week - really affecting the quality of my sleep, causing a lot of extra laundry, and an outright nuisance.
CT scan (couldn't see is because computer keeps glitching; will get to see it next week when I see my orthopedic surgeon). ID specialist said that the scan shows a deformity in the bone, about the same location on my tibia as the spot on the MRI from December. It has shrunk a bit since the end of last year. "Yay!" I think - great if it is a tad smaller, but boo for it still being there.
Antibiotics - will stay on Doxycycline until the end of May and then stop taking it. I need to call my ID specialist if my leg flares up or there is an increase in pain. Stopping the antibiotic is exciting news because Doxycycline increases photo sensitivity. I have already experienced this several times. I will be out in the sun for about thirty minutes and feel perfectly fine. A couple hours later my skin will become red and hot and burn. Several hours later it is as if nothing ever happened. While on it I need to stay out of the sun, which is not so fun after surviving a Canadian winter indoors... I need to be outside! I will be put back on antibiotics if anything happens, and before, during, and after the proposed surgeries.
Surgery - I have the go ahead from my ID specialist to schedule surgery when I see my surgeon next week Friday. She stated that the surgery is elective because it is not an emergency, but it does need to be done at some point. This gives me the opportunity to schedule it into my life. My mum an I are going to ask for late August (after the 14th when final exams end) or early September. This would hopefully put the second surgery (the bone graft) in November. My mum had a lot of questions about surgery regarding how invasive it is, other options, etc. We found out the surgeries my orthopedic surgeon proposed would make it possible to make my legs the same length (one is almost two centimeters longer than the other. This is not a very large difference and does not causes many problems, but I do notice it when I walk, it causes some discomfort when I stand for long periods of time and it has made my hips and shoulders a bit uneven). The chance of the bone graft taking is very high because I am young and otherwise healthy. There may be some alternatives to using a metal rod to hold the bone graft and the edges of my tibia together. We are a bit apprehensive about putting more metal in the leg given our previous experience with hardware. We could also potentially go with a less invasive surgery (same as last time - simply scraping away the affected bone). While this sounds great - only one surgery, smaller incision, much shorter recovery time - I am leaning toward the bone graft. We tried the simpler surgery before and it obviously did not work. In February the surgeon said that doing it again would likely not fix things for good. The bone graft option just seems to offer the best chance for me to beat this thing for ever, which is what I really really really want.
Always being cold - ID specialist had me get blood work today to make sure my thyroid is working properly. Mum and I are a bit baffled that this has never been done before. I have been mentioning how I am constantly cold since I was referred to Hamilton in 2011. This is not "put on an extra sweater" to get warm cold. This is "I have 4 sweaters and 2 blankets on and I am still shivering" kind of cold. Freezing to the point that I feel my eyelids are cold when I blink; feel that the tip of my nose is cold from the inside out, without touching it, shivering under a mountain of blankets in bed, toes hurting from the cold, etc. etc. Hopefully we can figure out why. The cold, along with bone pain and night sweats, makes for one grumpy miserable person.
There were several things that really stuck out about today's appointment:
1) My ID specialist said that she does not understand why I was misdiagnosed/sent away by my previous doctors for so long. Given my symptoms it should have been obvious to the doctors that I had osteomyelitis. It is important for me to hear this from her. The physical pain and emotional distress my family and I went through when I had surgeries, saw me become ill, and were continuously sent away from appointments being told we were worrying to much was avoidable which resulted in the infection getting as bad as it did in 2011 was completely unacceptable. What could have been a routing case turned into something that has affected my life for over nine years, and will continue to do so as I have more surgeries this fall.
2) The ID specialist said "We are all affected by this, your doctors and your family, but it is the worst for you." I have been struggling to cope recently. I feel guilty toward my family for needing their support and causing them stress and anxiety. I feel bad for requiring them to take time out of their lives to care for me everything I have surgery. It helps me to know that my doctors and family recognize how hard this is for me - physically and emotionally. I am so fortunate to have the family and doctors that I do have. On the drive home, mum and I talked about my feelings of guilt; how I was afraid to say that I really want the surgery this fall because I don't want to inconvenience anyone. I explained how I feel we are all in this together so I try to consider how everyone feels, is affected, and experiences things. My dear mum looked at me and said "It is not nice to hear sometimes, but this is actually all about you, and that is o.k." I could have cried when she said that - she understands how hard this relapse is for me. I want to do something to shoe her how much I appreciate her and how she is forever standing by me.
3) Everytime my ID specialist pulls up scans, she explains that my tibia is much thicker than it should be because of all the trauma and surgeries. Today was not different - she commented on how my tibia was deformed, I immeditely replied "I know, I think you tell us every time we are here." I was not trying to be rude. I think my ID specialis ti s fantastice, but we have dones this so many times now... I am tired. There is nothing new to say. We know what the problem is - been round the block before. Which leads me to my next point
4) As we were walking toward the care in the basement parking lot, mum and I did not say much. We are usually excited about good news or a bit upset or distracted while we digest not so great news when we leave appointments. Today was just about acceptance... we knew that this was what it was coming to (surgery) - I think we are tired of dealing with this infection and sad it had returned. I just want to get the surgery done with so I can get on with my life. I won't say it is indifference per se, but I am ready to get it over with. I am fed up with having this thing take up so much of my time and energy. Something has to come to a head, and that means surgery. So we just accept it.
5) Last but not least, I was not upset that the CT scan showed something. Even the ID specialist said not to be surprise - that we knew something would come up on it. This is probably part of the last point (acceptance). I just hear the news and went with it.
On May 1st I will see my orthopedic surgeon to discuss (and see!) the CT scan and my surgical options (although I know which I will choose). We will also ask the surgeon to schedule a date for the first surgery. This scare the hell out of me since I have never had a multi-step plan like this before. It also fully set in today that between the surgeries I will not be able to walk on my leg at all... bummer. I will then have about four months to wait. Four months intermission to get on with my life before we hit pause for eight months. At least without the antibiotics from the start of June onwards (if nothing goes wrong) I can enjoy some sun and enjoy the summer!
I am so fortunate to have my mum with me for most of my appointments - I freeze when I see my doctors. Half their words fly over my head while the remainder swirl round my brain, leaving me muddled and confused. Being a nursing student and learning how hospitals and therapeutic nurse-client relationships function has not helped this. My mum is there to ask the questions I forget, or the ones I purposefully don't bring up because I don't want to know the answers.
We talked about several things:
Bone pain and discomfort (not to bad at the moment although it was pretty bad last week) - might cause some issues when my 12 hour clinical shifts start next month. Will have to see how it goes.
Night sweats - ID specialist said that they can occur with chronic infection, but doctors do not have an explanation for why. This doesn't help me. I am waking up drenched in sweat several times a week - really affecting the quality of my sleep, causing a lot of extra laundry, and an outright nuisance.
CT scan (couldn't see is because computer keeps glitching; will get to see it next week when I see my orthopedic surgeon). ID specialist said that the scan shows a deformity in the bone, about the same location on my tibia as the spot on the MRI from December. It has shrunk a bit since the end of last year. "Yay!" I think - great if it is a tad smaller, but boo for it still being there.
Antibiotics - will stay on Doxycycline until the end of May and then stop taking it. I need to call my ID specialist if my leg flares up or there is an increase in pain. Stopping the antibiotic is exciting news because Doxycycline increases photo sensitivity. I have already experienced this several times. I will be out in the sun for about thirty minutes and feel perfectly fine. A couple hours later my skin will become red and hot and burn. Several hours later it is as if nothing ever happened. While on it I need to stay out of the sun, which is not so fun after surviving a Canadian winter indoors... I need to be outside! I will be put back on antibiotics if anything happens, and before, during, and after the proposed surgeries.
Surgery - I have the go ahead from my ID specialist to schedule surgery when I see my surgeon next week Friday. She stated that the surgery is elective because it is not an emergency, but it does need to be done at some point. This gives me the opportunity to schedule it into my life. My mum an I are going to ask for late August (after the 14th when final exams end) or early September. This would hopefully put the second surgery (the bone graft) in November. My mum had a lot of questions about surgery regarding how invasive it is, other options, etc. We found out the surgeries my orthopedic surgeon proposed would make it possible to make my legs the same length (one is almost two centimeters longer than the other. This is not a very large difference and does not causes many problems, but I do notice it when I walk, it causes some discomfort when I stand for long periods of time and it has made my hips and shoulders a bit uneven). The chance of the bone graft taking is very high because I am young and otherwise healthy. There may be some alternatives to using a metal rod to hold the bone graft and the edges of my tibia together. We are a bit apprehensive about putting more metal in the leg given our previous experience with hardware. We could also potentially go with a less invasive surgery (same as last time - simply scraping away the affected bone). While this sounds great - only one surgery, smaller incision, much shorter recovery time - I am leaning toward the bone graft. We tried the simpler surgery before and it obviously did not work. In February the surgeon said that doing it again would likely not fix things for good. The bone graft option just seems to offer the best chance for me to beat this thing for ever, which is what I really really really want.
Always being cold - ID specialist had me get blood work today to make sure my thyroid is working properly. Mum and I are a bit baffled that this has never been done before. I have been mentioning how I am constantly cold since I was referred to Hamilton in 2011. This is not "put on an extra sweater" to get warm cold. This is "I have 4 sweaters and 2 blankets on and I am still shivering" kind of cold. Freezing to the point that I feel my eyelids are cold when I blink; feel that the tip of my nose is cold from the inside out, without touching it, shivering under a mountain of blankets in bed, toes hurting from the cold, etc. etc. Hopefully we can figure out why. The cold, along with bone pain and night sweats, makes for one grumpy miserable person.
There were several things that really stuck out about today's appointment:
1) My ID specialist said that she does not understand why I was misdiagnosed/sent away by my previous doctors for so long. Given my symptoms it should have been obvious to the doctors that I had osteomyelitis. It is important for me to hear this from her. The physical pain and emotional distress my family and I went through when I had surgeries, saw me become ill, and were continuously sent away from appointments being told we were worrying to much was avoidable which resulted in the infection getting as bad as it did in 2011 was completely unacceptable. What could have been a routing case turned into something that has affected my life for over nine years, and will continue to do so as I have more surgeries this fall.
2) The ID specialist said "We are all affected by this, your doctors and your family, but it is the worst for you." I have been struggling to cope recently. I feel guilty toward my family for needing their support and causing them stress and anxiety. I feel bad for requiring them to take time out of their lives to care for me everything I have surgery. It helps me to know that my doctors and family recognize how hard this is for me - physically and emotionally. I am so fortunate to have the family and doctors that I do have. On the drive home, mum and I talked about my feelings of guilt; how I was afraid to say that I really want the surgery this fall because I don't want to inconvenience anyone. I explained how I feel we are all in this together so I try to consider how everyone feels, is affected, and experiences things. My dear mum looked at me and said "It is not nice to hear sometimes, but this is actually all about you, and that is o.k." I could have cried when she said that - she understands how hard this relapse is for me. I want to do something to shoe her how much I appreciate her and how she is forever standing by me.
3) Everytime my ID specialist pulls up scans, she explains that my tibia is much thicker than it should be because of all the trauma and surgeries. Today was not different - she commented on how my tibia was deformed, I immeditely replied "I know, I think you tell us every time we are here." I was not trying to be rude. I think my ID specialis ti s fantastice, but we have dones this so many times now... I am tired. There is nothing new to say. We know what the problem is - been round the block before. Which leads me to my next point
4) As we were walking toward the care in the basement parking lot, mum and I did not say much. We are usually excited about good news or a bit upset or distracted while we digest not so great news when we leave appointments. Today was just about acceptance... we knew that this was what it was coming to (surgery) - I think we are tired of dealing with this infection and sad it had returned. I just want to get the surgery done with so I can get on with my life. I won't say it is indifference per se, but I am ready to get it over with. I am fed up with having this thing take up so much of my time and energy. Something has to come to a head, and that means surgery. So we just accept it.
5) Last but not least, I was not upset that the CT scan showed something. Even the ID specialist said not to be surprise - that we knew something would come up on it. This is probably part of the last point (acceptance). I just hear the news and went with it.
On May 1st I will see my orthopedic surgeon to discuss (and see!) the CT scan and my surgical options (although I know which I will choose). We will also ask the surgeon to schedule a date for the first surgery. This scare the hell out of me since I have never had a multi-step plan like this before. It also fully set in today that between the surgeries I will not be able to walk on my leg at all... bummer. I will then have about four months to wait. Four months intermission to get on with my life before we hit pause for eight months. At least without the antibiotics from the start of June onwards (if nothing goes wrong) I can enjoy some sun and enjoy the summer!
Sunday, March 29, 2015
Tiny Update
On Tuesday I have an appointment with another orthopedic surgeon to get a second opinion. I am pretty confident in what I want to do. Both my surgeon and ID specialist agree with each other about what needs to be done - surgery to remove the infected part of my tibia and packing the space left with antibiotics beads, followed by a bone graft from my left hip 2-3 months later. It sounds like a good plan. It is a good plan... I don't really want to go through with it, but I want to get rid of the infection, and that ultimately trumps not wanting more surgery. But second opinions are not bad; my surgeon says I have a right to get one , so I might as well take advantages of it... and it can never hurt to get more input. I am hopeful that a date for surgery will be scheduled soon. I would like to have it done as soon after second semester ends (August 15) as possible.
In three weeks, first semester ends. I was going to treat myself to a Lego set (three birds you can build and put on display) as a reward for making it through first semester, which the instructors say is usually the hardest semester, but I have decided to wait now until I have surgery - will be a nice reward and way to spend an afternoon. I have done so well in school that I don't think I need a reward to motivate me to keep going... surgery on the other hand... I will need all the motivation I can get.
My leg has been bothering me more the last two weeks. I wouldn't necessarily say it hurts more often, but I have been getting more strange tugging or tingling sensations in it ( peers in my clinical group say I look like I am definitely favoring the other leg), and when it does hurt, the pain is deeper and stops me, kind of takes my breath away. I am super tired all the time (I know I am working very hard for final projects and exams, but that is only part of it), and the chills have increased.
I am still on Doxycycline - likely will be on it at least until surgery. The headaches it was giving me thankfully went away, but it is causing some stomach issues. Oh, and staining my front teeth - it did this last time I was on it as well. Despite brushing my teeth really well at least twice a day and flossing, it still came back. Usually going to the dentist for a good clean fixes it, so I will try to book an appointment during the two weeks off between first and second semester.
There is more I would like to mentioned, but I have an early morning tomorrow. I have moved back home for April before my lease for second semester starts in May, so I am carpooling to school with a classmate. If we don't leave super early we get stuck in traffic. I will try to post more this week once I get some more projects done and I get my second opinion.
In three weeks, first semester ends. I was going to treat myself to a Lego set (three birds you can build and put on display) as a reward for making it through first semester, which the instructors say is usually the hardest semester, but I have decided to wait now until I have surgery - will be a nice reward and way to spend an afternoon. I have done so well in school that I don't think I need a reward to motivate me to keep going... surgery on the other hand... I will need all the motivation I can get.
My leg has been bothering me more the last two weeks. I wouldn't necessarily say it hurts more often, but I have been getting more strange tugging or tingling sensations in it ( peers in my clinical group say I look like I am definitely favoring the other leg), and when it does hurt, the pain is deeper and stops me, kind of takes my breath away. I am super tired all the time (I know I am working very hard for final projects and exams, but that is only part of it), and the chills have increased.
I am still on Doxycycline - likely will be on it at least until surgery. The headaches it was giving me thankfully went away, but it is causing some stomach issues. Oh, and staining my front teeth - it did this last time I was on it as well. Despite brushing my teeth really well at least twice a day and flossing, it still came back. Usually going to the dentist for a good clean fixes it, so I will try to book an appointment during the two weeks off between first and second semester.
There is more I would like to mentioned, but I have an early morning tomorrow. I have moved back home for April before my lease for second semester starts in May, so I am carpooling to school with a classmate. If we don't leave super early we get stuck in traffic. I will try to post more this week once I get some more projects done and I get my second opinion.
Friday, March 13, 2015
Tired
I am tired - really tired.
I am not sure why, but am confident it is one of the following, or likely a combination:
- the semester is almost over, with final projects and exams looming ahead, keeping me super busy
- I have been on an antibiotic (Doxycycline - 100 mg 2 x day) for four weeks now. Long term antibiotics can cause fatigue. I will probably be on Doxycycline until I have surgery, which is hopefully only five months away.
- the bone infection itself could be taking a toll on my body. My leg has been hurting more the usual since I ended up in the emergency department twice at the start of February. Not constant pain, but still there on and off throughout the day. It ranges from dull, achy pain to short bursts of stabbing pain (I think bone pain) to tingling in the skin over the scar on my shin where there is the most scar tissue/damage.
I wish I wasn't tired anymore. I came home from my lab class yesterday just pass noon. I was asleep by 1:30, and slept until 7:30. I was up until 2 am, then I slept from 2 am until 12:30pm. So the math - that's 16 1/2 hours of sleep. I woke up, and I was still tired. No. I did not sleep too much. I sleep to little and I wake up tired; I sleep exactly eight hours a night, and I wake up tired; I sleep a ridiculously long period of time, and guess what? I wake up tired!
I saw my infectious disease specialist again on February 26. I ran out of antibiotics on the 24th, so I called her office to see what she wanted me to do. Her assistant called back later in the day and asked if Thursday was o.k., so my mum and I went (with you appointment with IKEA on the way home... seeing the doctor is only a detour!). I have started to dread these appointments. At the back of my mine, as usual, I worried that nothing was wrong and the doctor would dismiss everything as one big mistake and send me home. Typical me - always worried that I am overreacting or in other people's way. I think that is still the results of doctors denying that something was wrong for so long. My ID specialist actually agreed with my orthopedic surgeon that I would need more surgery. She looked back in my records, all the way to 2008 when I was still being seen in St.Catharines by another surgeon. The swab samples taken in 2008 were the only ones to ever grow something - Staphylococcus aureus and staphylococcus negative coagulase. Yay! Know I have a name to put with this monster in my leg! She said, given that stap. negative coagulase is very sticky organism, it kind of makes sense that the infection could still be around (not that it should be after all the surgery and antibiotics, but it makes some sense...). Mum asked the million dollar question "Is it o.k for her to be off antibiotics?" to which ID specialist responded "No! I actually want her on more." which is why I am indefinitely on Doxycycline. My only response to that is to start collecting pill bottles again. I still have all of them from when I dealt with this bastard infection last time. ID wanted me to get a second opinion from another ID specialist, until she realized she was about to go meet a whole group of other specialists and other doctors. Every Thursday they meet for "Tea", which is where they discuss all the really interesting cases. I guess I am part of that now... don't know if I should cry or be proud! It is great that she does this, because it saves me waiting for another appointment and trying to schedule around my classes.
I was upset when mum and I left the appointment - my mum took me too the gift shop - I got the McMaster plush Pickles the Pig and a beautiful red bag with white rabbits on it. My mum does everything she can to cheer me up; I do not know if she knows how much I appreciate it! I couldn't get through this without her... I was quiet on the way to the parking garage - I only do that when I am really deep in thought or upset. My mum said "I don't know what goes on in your head right now." I replied "I don't know either." Saying that, and now reflecting on it, makes me sad, but worse than sad. I don't know how to describe it. I want this to be over. Haven't I been through enough? Can't it be someone else's turn? Nine years since the initial break and know waiting for surgery to take out a piece of my tibia, cutting it in two, essentially re-breaking it! De Capo! Back to head! From the beginning! as the marking on my piano sheet music would indicate. I can't do this. No, I can. Can I? I don't want to. I want to be normal; whole? Does that makes sense? In my book, this really has become a chronic illness. I want to be healthy and ignorant like my friends. I am too young to think of pain, surgery, health issues; to know pain an uncertainty; to not have energy.
My next appointment is in March 31, to have a second opinion from another Orthopedic surgeon. Then I see my ID specialist on April 23 so that I don't get lost in the system.
I should probably call my surgeon next week to make a follow up with him as well for after I get the second opinion.
I keep telling myself, if I can get through the rest of the semester and exams (only five more weeks!), past the two week break between semester, and into May, then I can make it to surgery (hopefully late August/early September).
I need to get to bed now... clinical in the morning. Being assessed on vital signs!
I am not sure why, but am confident it is one of the following, or likely a combination:
- the semester is almost over, with final projects and exams looming ahead, keeping me super busy
- I have been on an antibiotic (Doxycycline - 100 mg 2 x day) for four weeks now. Long term antibiotics can cause fatigue. I will probably be on Doxycycline until I have surgery, which is hopefully only five months away.
- the bone infection itself could be taking a toll on my body. My leg has been hurting more the usual since I ended up in the emergency department twice at the start of February. Not constant pain, but still there on and off throughout the day. It ranges from dull, achy pain to short bursts of stabbing pain (I think bone pain) to tingling in the skin over the scar on my shin where there is the most scar tissue/damage.
I wish I wasn't tired anymore. I came home from my lab class yesterday just pass noon. I was asleep by 1:30, and slept until 7:30. I was up until 2 am, then I slept from 2 am until 12:30pm. So the math - that's 16 1/2 hours of sleep. I woke up, and I was still tired. No. I did not sleep too much. I sleep to little and I wake up tired; I sleep exactly eight hours a night, and I wake up tired; I sleep a ridiculously long period of time, and guess what? I wake up tired!
I saw my infectious disease specialist again on February 26. I ran out of antibiotics on the 24th, so I called her office to see what she wanted me to do. Her assistant called back later in the day and asked if Thursday was o.k., so my mum and I went (with you appointment with IKEA on the way home... seeing the doctor is only a detour!). I have started to dread these appointments. At the back of my mine, as usual, I worried that nothing was wrong and the doctor would dismiss everything as one big mistake and send me home. Typical me - always worried that I am overreacting or in other people's way. I think that is still the results of doctors denying that something was wrong for so long. My ID specialist actually agreed with my orthopedic surgeon that I would need more surgery. She looked back in my records, all the way to 2008 when I was still being seen in St.Catharines by another surgeon. The swab samples taken in 2008 were the only ones to ever grow something - Staphylococcus aureus and staphylococcus negative coagulase. Yay! Know I have a name to put with this monster in my leg! She said, given that stap. negative coagulase is very sticky organism, it kind of makes sense that the infection could still be around (not that it should be after all the surgery and antibiotics, but it makes some sense...). Mum asked the million dollar question "Is it o.k for her to be off antibiotics?" to which ID specialist responded "No! I actually want her on more." which is why I am indefinitely on Doxycycline. My only response to that is to start collecting pill bottles again. I still have all of them from when I dealt with this bastard infection last time. ID wanted me to get a second opinion from another ID specialist, until she realized she was about to go meet a whole group of other specialists and other doctors. Every Thursday they meet for "Tea", which is where they discuss all the really interesting cases. I guess I am part of that now... don't know if I should cry or be proud! It is great that she does this, because it saves me waiting for another appointment and trying to schedule around my classes.
I was upset when mum and I left the appointment - my mum took me too the gift shop - I got the McMaster plush Pickles the Pig and a beautiful red bag with white rabbits on it. My mum does everything she can to cheer me up; I do not know if she knows how much I appreciate it! I couldn't get through this without her... I was quiet on the way to the parking garage - I only do that when I am really deep in thought or upset. My mum said "I don't know what goes on in your head right now." I replied "I don't know either." Saying that, and now reflecting on it, makes me sad, but worse than sad. I don't know how to describe it. I want this to be over. Haven't I been through enough? Can't it be someone else's turn? Nine years since the initial break and know waiting for surgery to take out a piece of my tibia, cutting it in two, essentially re-breaking it! De Capo! Back to head! From the beginning! as the marking on my piano sheet music would indicate. I can't do this. No, I can. Can I? I don't want to. I want to be normal; whole? Does that makes sense? In my book, this really has become a chronic illness. I want to be healthy and ignorant like my friends. I am too young to think of pain, surgery, health issues; to know pain an uncertainty; to not have energy.
My next appointment is in March 31, to have a second opinion from another Orthopedic surgeon. Then I see my ID specialist on April 23 so that I don't get lost in the system.
I should probably call my surgeon next week to make a follow up with him as well for after I get the second opinion.
I keep telling myself, if I can get through the rest of the semester and exams (only five more weeks!), past the two week break between semester, and into May, then I can make it to surgery (hopefully late August/early September).
I need to get to bed now... clinical in the morning. Being assessed on vital signs!
Wednesday, June 13, 2012
Tazo-Don't
Now that I have vented a bit I should update a little. My leg is doing well. A good amount of the swelling has gone away. There is still some but not as bad as it was (thankfully because being able to feel my skin slowly stretch is a truly disgusting experience). There is still enough that I will discuss it with my infectious disease specialist at my next appointment. There is some concern that after so much damage/many surgeries there is circulation damage. The spots that had opened up a few weeks ago at the peek of swelling are healing. For a while they were leaking tea coloured fluid which is concerning, exp. given that I have also been experiencing some of my pre surgery pain. A good chunk of my right shin has not regained feeling. This was expected as this was the third incision made in the same spot. Also, given that, in order close the incision, the old scar had to be cut away, the skin is fairly tight and my shin is really bumpy. I hope that this gets better as I move farther and farther from surgery. The muscles are still extremely tight. I think that I almost have full range of motion in my ankle, but I can feel the muscles moving/flexing over my shin. Going down stairs is still pretty uncomfortable.This is probably because while in surgery the muscles had to be moved out of the way. Amazing that eight weeks later I am still feeling the side effects of that.
The antibiotics have not been going very well. I have had at least one headache everyday for the last week, often more. The IV Tazocin makes me very dizzy and nauseous. I often just end up laying in bed for a hours at a time. It seems to be the worst at night, esp. because I have been experiencing really bad insomnia. Because I am often so nauseous I haven't been eating a lot. Between last night 11pm and today 7pm today (that's 20hours) I ate about 6 small chocolate flavored cracker things and that was it. There was no inclination to eat. None at all. Just past 7pm I did eat a small bite of lasagna and a small bowl of chips, but I am really not interested in food. Take last night for example, my brother brought me a bowl of Ringos, but just the smell of them made me want to vomit. I have pretty much have zero stamina. Everything is such an effort these days. I don't want to sound dramatic, but I feel even worse than I did last spring right before I was diagnosed, which is really saying something because last spring I was a zombie. The antibiotics have some sort of cumulative effect. The longer you take them, esp. without missing a dose, the better they are supposed to work. However, the antibiotics can "just stop working" after a while. I have been on the oral Septra since last August so who know at this point. I won't have any answers until my next scans are done. My stomach has been on the fritz again, but I know that telling you this is making people scream "TMI! TMI," so I won't go further into that.
FYI -Tazocin is a strong antibiotics used for serious infections. It also has some really serious side effects. The chances of getting one of those serious side effects increases the longer you are on it. From what I have been told, most people take Tazocin for 2-3 weeks. I am at 8 weeks and feel like crap, so I am at the point where I want off this drug. I also just learned that one of the main ingredients Piperacillin decreases the effectiveness of Doxycycline, the oral antibiotic I was on right after surgery, so I am very happy to be back on the Septra. As for the Tazocin, I want off that ****.
Thursday, May 31, 2012
Long over do update
I've made it to the half way mark. Six weeks down and six more to go! Six weeks and I... and I hope I will never have to go through any of this again.
On May 4th I went for my post op appointment. The surgeon was amazing, as usual (it makes such a difference to have doctors that have good people skills!). He went over everything that had been done during surgery and said he thought he had gotten all the dead bone out and crammed everything full off antibiotic beads and sponges. He was very pleased because he though a lot more would have to come out. He said that I could ditch my trusty arch nemesis (my crutches), which was a huge relief because the bag with my IV pump was always getting in the way. I'm not allowed to do anything but walk until the next time I see him, but I don't have the energy to be running around anyways. The staples were taken out (only seventeen this time), steri strips were put on with a dressing over top and I was good to go. I was given orders to see a colleague of the surgeon two weeks after the IV antibiotics have been finished (my surgeon will be on paternity leave).
May 10th I saw my infectious disease specialist. My mom and I had a really long talk with her about everything and all of out concerns and "what ifs". She was really good in answering all of our questions and reassuring us that even if things don't go as planned, we do have other options. She had a med student with her. A really nice (and attractive *wink*) doctor who was studying to be a specialist for pediatric cancer. He was getting some experience in other parts of the hospital because cancer patients can have so many different complications due to chemo, etc. On the one hand it's great that doctors can learn from what I am going through, but on the other you can't help wondering why they look at your case specifically. There aren't that many people with bone infections, and as far as I have been told a lot of the people my ID specialist sees are pretty straight forward cases (meaning no surgery/PICC lines). It was so weird to hear the ID saying she had had a very long conversation with the med students about me the day before. Hospitals are unique in that sense. You have a whole team of doctors who know everything there is to know about your health yet you know next to nothing about them. While there we decided to stop the Doxycycline because I had developed really bad heartburn (which can lead to ulcers) and some other not so pleasant side effects, and went back to the oh so familiar Septra (the name still reminds me of sepsis). The incision still hadn't healed so we put on new steri strips and decided to continue dressing changes. I see the ID again on June 14, when we will schedule my next set of scans.
Saturday the 19th the weekend nurse decided I didn't need a dressing anymore, even though parts of the incision still hadn't healed, so on Monday 21st I asked the nurse to put a new dressing on. By noon the steri strips had turned a yellow orangey tinge. The incision had decided to leak fluid. We kept putting new dressings on until two 1/2 days ago, and everything looked healed up.
Life has been going pretty slowly over the last few weeks. Some days I have a noticeably larger amount of energy, and other days, like today, it is hard just to get out of bed. The last few days the incision site has really been bugging me. Late Monday evening it started to sting. I thought it might just go away so ignored it. Tuesday it didn't go away and when I looked at my leg I saw that the scar was pretty red and a pit puffy. Yesterday it really hurt and I could squeeze fluid out of the incision. Today it hurts a bit less and seems less swollen but I am nervous never the less. My mom keeps going on about "it looks a bit better", but that was the story with the infection for months and months before surgery. I am afraid that something is still going on. Surgery, antibiotics in my leg, and six weeks of IV antibiotics should not equal a draining incision. It feels like the skin is stretching, which happens when there is swelling. This isn't the swelling from surgery because that had started to go down, and never hurt. This time it definitely hurts and it is really red. I am going to call the ID tomorrow because I am not happy. On top of everything I feel like crap, am exhausted and have been battling a pretty bad headache over the last few days. I am exhausted.
Fingers crossed that everything is ok, but I am a pretty good judge about knowing if everything is doing as it should in my body.
On May 4th I went for my post op appointment. The surgeon was amazing, as usual (it makes such a difference to have doctors that have good people skills!). He went over everything that had been done during surgery and said he thought he had gotten all the dead bone out and crammed everything full off antibiotic beads and sponges. He was very pleased because he though a lot more would have to come out. He said that I could ditch my trusty arch nemesis (my crutches), which was a huge relief because the bag with my IV pump was always getting in the way. I'm not allowed to do anything but walk until the next time I see him, but I don't have the energy to be running around anyways. The staples were taken out (only seventeen this time), steri strips were put on with a dressing over top and I was good to go. I was given orders to see a colleague of the surgeon two weeks after the IV antibiotics have been finished (my surgeon will be on paternity leave).
 | |
| This is one of the x-rays taken right after surgery when I was still in the PACU/recovery room before being moved to the orthopedic ward. The gray spots in are were bone had been taken away. Here you can see how deformed my right tibia is. It should be a lot smoother and thinner. |
Saturday the 19th the weekend nurse decided I didn't need a dressing anymore, even though parts of the incision still hadn't healed, so on Monday 21st I asked the nurse to put a new dressing on. By noon the steri strips had turned a yellow orangey tinge. The incision had decided to leak fluid. We kept putting new dressings on until two 1/2 days ago, and everything looked healed up.
Life has been going pretty slowly over the last few weeks. Some days I have a noticeably larger amount of energy, and other days, like today, it is hard just to get out of bed. The last few days the incision site has really been bugging me. Late Monday evening it started to sting. I thought it might just go away so ignored it. Tuesday it didn't go away and when I looked at my leg I saw that the scar was pretty red and a pit puffy. Yesterday it really hurt and I could squeeze fluid out of the incision. Today it hurts a bit less and seems less swollen but I am nervous never the less. My mom keeps going on about "it looks a bit better", but that was the story with the infection for months and months before surgery. I am afraid that something is still going on. Surgery, antibiotics in my leg, and six weeks of IV antibiotics should not equal a draining incision. It feels like the skin is stretching, which happens when there is swelling. This isn't the swelling from surgery because that had started to go down, and never hurt. This time it definitely hurts and it is really red. I am going to call the ID tomorrow because I am not happy. On top of everything I feel like crap, am exhausted and have been battling a pretty bad headache over the last few days. I am exhausted.
Fingers crossed that everything is ok, but I am a pretty good judge about knowing if everything is doing as it should in my body.
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