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.
Sunday, March 29, 2015
Saturday, March 14, 2015
Tweaking
I have been tweaking how my site looks a bit. I figure that since I will be off school for eight months (hopefully starting in August or September, depending on when surgery will be), I will have plenty of time to post on all of the ideas I have stacking up in my draft folder and the sticky notes beside my bed! The blog should look a bit more personal if I intend to get more personal and post more! Also, I am starting to get a bit jealous of all the blogs I follow that look super cool... I might not know much about HTML, or have access to photoshop anymore (I miss it a lot), but I can still try = )
I will also be adding a few new sections to my blog, including About Me, My Story, and FAQs to answer any questions anyone might have about chronic osteomyelits or life with a chronic infection.
I will also be adding a few new sections to my blog, including About Me, My Story, and FAQs to answer any questions anyone might have about chronic osteomyelits or life with a chronic infection.
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!
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