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!
Showing posts with label waiting. Show all posts
Showing posts with label waiting. Show all posts
Friday, April 24, 2015
Friday, February 06, 2015
Waiting...
Waiting for my ID specialist to call with scan results. Hopefully I will get them today, but chances are I will get them early next week.
The emotional roller coaster is going way to fast. On moment I feel fine. Whatever happens, life still goes on. I am still the same person; still in nursing school; still feeling healthy and energetic. The next I am definitely not o.k. I am desperate for good news. I am reckless, edgy, tense. Or I am invincible, daring,... sometimes even a little bit brave! If there is an infection, bring it on! I can fight it again, just like last time. Then I despair again. Did I rally fight the infection if it has come back? Can I really fight it again?
I know that the MRI from December shows something in the bone and I know that my ID specialist thinks that there is likely still an infection lingering in my leg. I therefore went into the bone and WBC scans with the expectation that something would show up that would confirm the presence of an infection.
There is, however, a little voice inside me desperately hoping that the scans show nothing at all.
The bone scan definitely showed increased activity around my right tibia, but I could not make out the images from the WBC scan this morning. I am left here, waiting, hope still lingering. I pray to what ever gods there may be that the MRI is wrong. That whatever showed up on the MRI is nothing to worry about. But my MRI from December 2014 should not have looked like the one from October 2012. Things should have healed over the last two years. I need to stop thinking about this. My mind runs in circles, endlessly, infinity going, clinging to thoughts, both comforting and irrational. I don't want to know the results. I am limbo and everything is alright here in this middle place, between scans and results. I can stay here forever, just waiting. But I can't. There is a part of me that wants to know, needs to know so that I can do something. Anything. Action is better than not knowing. At least I would feel empowered and in control.
On Wednesday, when I cam home after the first part of the WBC scan, I called my mum. I told her about all these feeling I am having. She came up with a really good explanation of what people go through when they wait for scans. She said that this in-between period is like Schrodinger's cat. While the box is closed, the cat can be considered both dead and a live. While waiting for results, a patients can be considered both sick and healthy. I can see myself as being both disease free and having chronic osteomyelitis. I can fill the roles of both patient and healthy individual. I am in limbo, a delicate balance, waiting for one phone call, and that call will throw everything into either normalcy or chaos.
I don't want to be ill - nobody does. But the role of patient is so so so familiar, so easy to slip back into. Life becomes simpler - you take your medication, comply with a treatment plan, show up for appointments and scans that other people arrange for you. When you are ill, you accomplishments feel even greater. I find myself hoping both for health and an infection. I want to be healthy, like anyone else would. Life is going so well at the moment, but if the infection is back, I don't have to worry about every twinge or spasm in my leg anymore. I think I am just afraid that if the results are favorable that I will feel like I have wasted everyone's time, even though I know that I have a valid reason to get all these scans. Heck, the ID specialist herself said she thinks it is very likely that the bone infection is back.
In 2011, when I was finally given a diagnosis after 6 years, I was relieved. It wasn't all in my head. I could get treatment and get better. It is so much worse now, waiting, nine years after this all started. I got treatment, I went through several surgeries and IV antibiotics and a PICC line, I took countless pills, had innumerable scans and appointments. I had a goal to cure the infection, and I reached it, and then I had a goal to get my energy and strength back, to continue with life, and I did those things! Now I look back in time, at how hard it all was, and see how far I have come. Having to goo back now would be so much worse.
I just hope that everything will be o.k. Please let the infection not be back. I can physically handle anything that happens, but I can't do the emotional, mental part again. I need to be healthy. That is all I want. More surgery? No problem. Another PICC line? Bring it on! Pills and appointment? Why not!
But not the part where your perception of yourself changes, from healthy to ill. And not the worry that comes with scans and negative results.
I have sat here, waiting for results, so many times before. It never gets easier, and you never get used to it. The fear of the unknown and the desperateness don't go away. Many things in life become usual, but this is not one of those things. I hope my ID specialist calls tomorrow. At least if I know, I can do something about it.
The emotional roller coaster is going way to fast. On moment I feel fine. Whatever happens, life still goes on. I am still the same person; still in nursing school; still feeling healthy and energetic. The next I am definitely not o.k. I am desperate for good news. I am reckless, edgy, tense. Or I am invincible, daring,... sometimes even a little bit brave! If there is an infection, bring it on! I can fight it again, just like last time. Then I despair again. Did I rally fight the infection if it has come back? Can I really fight it again?
I know that the MRI from December shows something in the bone and I know that my ID specialist thinks that there is likely still an infection lingering in my leg. I therefore went into the bone and WBC scans with the expectation that something would show up that would confirm the presence of an infection.
There is, however, a little voice inside me desperately hoping that the scans show nothing at all.
The bone scan definitely showed increased activity around my right tibia, but I could not make out the images from the WBC scan this morning. I am left here, waiting, hope still lingering. I pray to what ever gods there may be that the MRI is wrong. That whatever showed up on the MRI is nothing to worry about. But my MRI from December 2014 should not have looked like the one from October 2012. Things should have healed over the last two years. I need to stop thinking about this. My mind runs in circles, endlessly, infinity going, clinging to thoughts, both comforting and irrational. I don't want to know the results. I am limbo and everything is alright here in this middle place, between scans and results. I can stay here forever, just waiting. But I can't. There is a part of me that wants to know, needs to know so that I can do something. Anything. Action is better than not knowing. At least I would feel empowered and in control.
On Wednesday, when I cam home after the first part of the WBC scan, I called my mum. I told her about all these feeling I am having. She came up with a really good explanation of what people go through when they wait for scans. She said that this in-between period is like Schrodinger's cat. While the box is closed, the cat can be considered both dead and a live. While waiting for results, a patients can be considered both sick and healthy. I can see myself as being both disease free and having chronic osteomyelitis. I can fill the roles of both patient and healthy individual. I am in limbo, a delicate balance, waiting for one phone call, and that call will throw everything into either normalcy or chaos.
I don't want to be ill - nobody does. But the role of patient is so so so familiar, so easy to slip back into. Life becomes simpler - you take your medication, comply with a treatment plan, show up for appointments and scans that other people arrange for you. When you are ill, you accomplishments feel even greater. I find myself hoping both for health and an infection. I want to be healthy, like anyone else would. Life is going so well at the moment, but if the infection is back, I don't have to worry about every twinge or spasm in my leg anymore. I think I am just afraid that if the results are favorable that I will feel like I have wasted everyone's time, even though I know that I have a valid reason to get all these scans. Heck, the ID specialist herself said she thinks it is very likely that the bone infection is back.
In 2011, when I was finally given a diagnosis after 6 years, I was relieved. It wasn't all in my head. I could get treatment and get better. It is so much worse now, waiting, nine years after this all started. I got treatment, I went through several surgeries and IV antibiotics and a PICC line, I took countless pills, had innumerable scans and appointments. I had a goal to cure the infection, and I reached it, and then I had a goal to get my energy and strength back, to continue with life, and I did those things! Now I look back in time, at how hard it all was, and see how far I have come. Having to goo back now would be so much worse.
I just hope that everything will be o.k. Please let the infection not be back. I can physically handle anything that happens, but I can't do the emotional, mental part again. I need to be healthy. That is all I want. More surgery? No problem. Another PICC line? Bring it on! Pills and appointment? Why not!
But not the part where your perception of yourself changes, from healthy to ill. And not the worry that comes with scans and negative results.
I have sat here, waiting for results, so many times before. It never gets easier, and you never get used to it. The fear of the unknown and the desperateness don't go away. Many things in life become usual, but this is not one of those things. I hope my ID specialist calls tomorrow. At least if I know, I can do something about it.
Wednesday, July 11, 2012
Tomorrow, tomorrow, I'll love...
... my leg tomorrow... depending on the results that is.
I get my scan results tomorrow morning when I see my infectious disease speacilsit. I would really like some good news... what I will do next e.g. in regards to school, really depends on those results. I have already decided that if the infection is gone I will only take two courses first semester so that I can also focus on finishing off the last academic year and getting better. Thankfully I will still be on schedule to graduate when I had planned too! (That's the wonderful thing about taking five years to complete a four year degree... time wise I can afford to be ill for some of it). If someone had told me a year ago that I would feel as sick as I do now, after 12 months of antibiotics, I would not have believed it. But wow. One year really makes a big difference in how you feel. I know that I felt terrible last year due to the infection, but I think I feel almost as terrible now due to the antibiotics.
I don't really know what to expect as I have started having bone pain again, all of twelve week after surgery.
I would cross my fingers for luck, but this really isn't down to luck at all. The results have been in for at least week now, so the only difference between the present and this time tomorrow is my knowing those results. It's not like they will magically change between tonight and 9:30 tomorrow morning! There is nothing I can do to make them any different. As I recall posting when I started this blog - "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. Rather I shall prepare my self for the worst, and jump for joy if it is anything better.
Oh, to be bone infection free would be a beautiful thing...
I get my scan results tomorrow morning when I see my infectious disease speacilsit. I would really like some good news... what I will do next e.g. in regards to school, really depends on those results. I have already decided that if the infection is gone I will only take two courses first semester so that I can also focus on finishing off the last academic year and getting better. Thankfully I will still be on schedule to graduate when I had planned too! (That's the wonderful thing about taking five years to complete a four year degree... time wise I can afford to be ill for some of it). If someone had told me a year ago that I would feel as sick as I do now, after 12 months of antibiotics, I would not have believed it. But wow. One year really makes a big difference in how you feel. I know that I felt terrible last year due to the infection, but I think I feel almost as terrible now due to the antibiotics.
I don't really know what to expect as I have started having bone pain again, all of twelve week after surgery.
I would cross my fingers for luck, but this really isn't down to luck at all. The results have been in for at least week now, so the only difference between the present and this time tomorrow is my knowing those results. It's not like they will magically change between tonight and 9:30 tomorrow morning! There is nothing I can do to make them any different. As I recall posting when I started this blog - "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. Rather I shall prepare my self for the worst, and jump for joy if it is anything better.
Oh, to be bone infection free would be a beautiful thing...
Wednesday, April 18, 2012
Go time! (unnatural at 5 am BTW)
Leaving for the hospital in a few minutes. I hardly slept a wink! Although I think everything that will happen today has finally sunken in. I am surprisingly calm, and even felt up to cleaning my guinea pig's cage one last time so it is clean for my mom! No more waiting for me. Wish me luck =)
Tuesday, April 17, 2012
SOOOOOOOOOOOOO close!
This is it folks! Tomorrow is show time (both literally and figuratively, as their will probably be med students watching the whole thing. God bless there super absorbent brains, but after you tell your whole medical history to the 3rd one, it gets old, and it gets old fast. I guess that proves that getting attention isn't all that great either!)
I'm just enjoying a final meal now, as I can't drink/eat after midnight. Nothing tops a giant mug of tea and a bowl of pretzel sticks!
Today I (in the order given): cleaned, vacuumed, went to the store for last minute things, activated my new cellphone (haven't had one since the end of grade nine (5 years ago, I know. I am way behind technology, especially seeing that my 74 year old grandfather got a cell phone years ago!), and showered. Just have to pack now... I'm going to start babbling soon, cause that's what I do when I am super nervous (blabbity blabbity blab), so I will logout and pack.
I would ask that you tell me to "break a leg" in tomorrow's performance, but,... um... well, that's the exact thing I don't want to happen. So, instead, wish me luck!
I'm just enjoying a final meal now, as I can't drink/eat after midnight. Nothing tops a giant mug of tea and a bowl of pretzel sticks!
Today I (in the order given): cleaned, vacuumed, went to the store for last minute things, activated my new cellphone (haven't had one since the end of grade nine (5 years ago, I know. I am way behind technology, especially seeing that my 74 year old grandfather got a cell phone years ago!), and showered. Just have to pack now... I'm going to start babbling soon, cause that's what I do when I am super nervous (blabbity blabbity blab), so I will logout and pack.
I would ask that you tell me to "break a leg" in tomorrow's performance, but,... um... well, that's the exact thing I don't want to happen. So, instead, wish me luck!
Monday, April 16, 2012
An essay! An essay! My kingdom for a completes essay!
Who is pulling an all nighter the day before surgery to finish an essay that is two months late?!? I am. Probably not the smartest thing to be doing, but I figure I can sleep after surgery. I have to get this assignment done asap. My professor has run out of patients. I should never have started new courses in January. If only I had just stuck with Lingua Latina, and one history course! At least with four credits this school year and a high average I can still keep my scholarship!
Saturday, April 14, 2012
Found my archnemesis today - crutches
Well, that was depressing. I had to get the crutches out of the basement today. Fingers crossed that the bone doesn't break in surgery. Today I had my first real panicky feeling related to this surgery. I don't think I had fully comprehended yet that I will be on crutches. I knew that I would be but I kind of put it to the back of my head for while, until reality slapped me in the face this evening. I really just wish I could get it over with right now but I should just hurry up an wait...
On a brighter note, I ate a 1/4 of a birthday cake today. I wasn't even at a birthday party. I just really wanted cake and the horribly greasy icing that comes one it, so I bought one! The shame will come later, once the cake is gone (plan is for it to be eaten by surgery, but my mom and brother want some too, so I am not a complete glutton).
On a brighter note, I ate a 1/4 of a birthday cake today. I wasn't even at a birthday party. I just really wanted cake and the horribly greasy icing that comes one it, so I bought one! The shame will come later, once the cake is gone (plan is for it to be eaten by surgery, but my mom and brother want some too, so I am not a complete glutton).
Friday, April 13, 2012
Waiting (Insert Jeopardy Theme Song Here)
Thursday, April 12, 2012
Who says being sick means you can't be stylish?
Today was a good day. A happy day, despite my building anticipation for the 18th. To take my mind off things I decided to go to the mall. This is something I hardly do anymore, because I either 1) don't have the energy or 2) have a splitting headache due to the antibiotics I am on. My intention was to find something for mother's day and for my mother's birthday, as I won't be able to get out much for while after surgery. But there were so many nice things I thought my mom would like (she loves birds!). So I decided not to get anything today and asked her to come with me to the stores this weekend. I suggested we first go to NOTL because the Ten Thousand Villages store there always seems to have something she likes. It will be a nice treat before surgery, and I will hopefully find something really nice for her (she deserves it for the attention she has already given me, and which she will give even more of after surgery). I did find some nice scarves and accessories for me.
I got some new scarves for the spring. All of mine are really thick, so are to hot for the summer. I realize now that I should have coordinated them to match the fabric I got for the PICC line covers. There was 3 for 15$ deal, and since I couldn't figure out if I liked the blue or the gray better I just got both and then added the red. I know it is a marketing strategy made to get people to buy more, but I hardly ever treat myself. I though the red would be nice. We all seem to wear way to much black and other dark colours nowadays.
I also got a new necklace and new earrings. At first I only saw the necklace, which would have been 9.50$ itself, but then I realized that you could get 3 for 10$ and I though that for 50cents more I could not go wrong. Plus, I lost one of my favorite earrings on the bus about a month ago, so now I have a replacement. I might be on crutches and sporting a PICC line this time next week, but at least I will be stylish!.
Oh, and most importantly, I got my haircut. I have never had it this short before, but I think it was a good length to go with. I figure that since I will be in pain for a while after surgery and that is will be difficult to shower with my right leg and which ever arm the PICC line goes in not being allowed to get wet. Nice short hair equals no hassle. I won't have to worry about it getting tangled or to dirty, and it is short enough that I might just be able to wash it in the sink! Low maintained is a most when recovering from surgery.
About mid way through my trip to the mall I could start to feel my leg acting up, and I was really glad to arrive back home, but the pain was worth the independence and alone time. I also browsed around for a really tiny backpack. I don't know yet what the deal is with the IV antibiotics, but I wanted to know were I could get my mom to buy an inexpensive and small but still nice backpack to carry around if I have to carry the antibiotics with my. No luck, but I think they have some at the bigger mall (I really dislike that mall).
The waiting is getting shorter. Only six more sleeps!
I got some new scarves for the spring. All of mine are really thick, so are to hot for the summer. I realize now that I should have coordinated them to match the fabric I got for the PICC line covers. There was 3 for 15$ deal, and since I couldn't figure out if I liked the blue or the gray better I just got both and then added the red. I know it is a marketing strategy made to get people to buy more, but I hardly ever treat myself. I though the red would be nice. We all seem to wear way to much black and other dark colours nowadays.
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| Aaaah! Can you see all my freckles returning in a giant blotch? |
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| I really like the back. |
About mid way through my trip to the mall I could start to feel my leg acting up, and I was really glad to arrive back home, but the pain was worth the independence and alone time. I also browsed around for a really tiny backpack. I don't know yet what the deal is with the IV antibiotics, but I wanted to know were I could get my mom to buy an inexpensive and small but still nice backpack to carry around if I have to carry the antibiotics with my. No luck, but I think they have some at the bigger mall (I really dislike that mall).
The waiting is getting shorter. Only six more sleeps!
Almost There!
Six days until surgery! and only 148 hours until I leave for the hospital; 152 until the surgery itself! Hurray! O.k. I know this is overdoing it, but I have been waiting for this for nine month now, and as afraid as I am of surgery and its risks, and the dreaded PICC line, I am also ready to get this over with.
I have one big concern which I do not know if my doctors have been completely truthful about. I have been on 4000mg of antibiotics every day for the last nine month, and am about to start IV antibiotics, most likely combined with, and then followed by more oral antibiotics. The doctors have said that this will not effect my immune system. However, I have had a cold for several months, one that just won't go away (alas, it was not allergies to the hay I feed my guinea pigs, although that does seem to have contributed to the severity of things). I think it is finally going away, which would be great just before surgery! How can they tell me that, what is likely to be at least a whole year of antibiotics, won't effect my immune system? Perhaps I will press them a bit harder when I have surgery.
On a lighter note (cause the last few posts have had heavier content), my mom and I were joking today about me finding a boyfriend. I told her that I should just ask my Infectious Disease specialist if she is working with any hot, 20-some-odd year guy who has a bone infection. That way we could at least have adjoining hospital rooms, if not beds! Hell, we would have enough in common as my wonderful friend Beth said when I told her. She said we (this hypothetical man and I) would have more understanding for one another than anyone else!
When (I refuse to use the word if at the moment) I am better I should write a post about all the best and funniest experiences I had through this ordeal. For now, I am almost there, just a little bit more waiting.
I should note that this was posted on Thursday just after 1:00am, but blogger is making it seem like I posted this late Wednesday night. That is why I am saying six days (especially since I will probably sleep until 3:00pm) and note seven.
I have one big concern which I do not know if my doctors have been completely truthful about. I have been on 4000mg of antibiotics every day for the last nine month, and am about to start IV antibiotics, most likely combined with, and then followed by more oral antibiotics. The doctors have said that this will not effect my immune system. However, I have had a cold for several months, one that just won't go away (alas, it was not allergies to the hay I feed my guinea pigs, although that does seem to have contributed to the severity of things). I think it is finally going away, which would be great just before surgery! How can they tell me that, what is likely to be at least a whole year of antibiotics, won't effect my immune system? Perhaps I will press them a bit harder when I have surgery.
On a lighter note (cause the last few posts have had heavier content), my mom and I were joking today about me finding a boyfriend. I told her that I should just ask my Infectious Disease specialist if she is working with any hot, 20-some-odd year guy who has a bone infection. That way we could at least have adjoining hospital rooms, if not beds! Hell, we would have enough in common as my wonderful friend Beth said when I told her. She said we (this hypothetical man and I) would have more understanding for one another than anyone else!
When (I refuse to use the word if at the moment) I am better I should write a post about all the best and funniest experiences I had through this ordeal. For now, I am almost there, just a little bit more waiting.
I should note that this was posted on Thursday just after 1:00am, but blogger is making it seem like I posted this late Wednesday night. That is why I am saying six days (especially since I will probably sleep until 3:00pm) and note seven.
Tuesday, April 10, 2012
Waiting with Plutarch and Suetonius
Waiting. Waiting is fun when you have to read Plutarch and Suetonius. Throw a bit of Appian in the mix and your golden! Except when you have to write an essay when your are done reading, and I really don't want to write this essay. It is about the Triumphs of Julius Caesar, and the reading is really quite interesting, but I still can't motivate myself to write. The thing is, this essay was due on February 17th. Ya, I know... this is majorly over do. The wonder of having a bone infection is that you always feel like you have been smooshed by a piano falling from the umptenth floor, which means that you get all the extensions for university assignments that your little heart could ever desire. The goal is that you will feel better several weeks after the assignments is due, and then write it so it is over and done with. But if things don't go the way you want them to, as is what happened to me, you don't feel better. It's not that you don't intend to write the essay, because for all intensive purposes that desire is there, but on the odd occasion were you do feel semi-good, you get so excited that you go and do something that actually is fun. But now I am stuck. Classes have ended and the end of the term is speeding towards me like a run away freight train , and I have to write this paper while surgery is looming ahead of me. I don't really want surgery, I don't think anyone does, but I know that I need it which makes me kind of want it, if that makes any sense. However, to get to surgery I have to write this essay, and I really think essays are to much of a bother to give any attention to. I am also stuck in anther as aspect. I am a good student, And excellent student. My marks are to die for. Literally, they are that good. But I have this horrible fear of failure. If I don't write the essay, I will fail but I will fail because I couldn't be bothered to complete the assignment. Vs. If I do complete the assignment there is the possibility of failure. The kicker is that if you follow the instructions there is no way to get below 70%. The whole thing is in my head! But I digress.
The main point of this post was to describe what will happen during surgery. Its really straightforward in my opinion. From what I was told, the surgeon will open part of previous incision site. He will use x rays during surgery and my latest MRI and CT scans to determine were the dead bone is, and take it, along with any suspicious looking tissue out. He will keep his fingers crossed that the bone doesn't break. If it does, things turn in a whole new direction e.g. external fixation, so I am really hoping that doesn't happen. The dilemma is as followed: the surgeon has to take out all of the dead bone, and by that I mean all, otherwise the infection won't go away. In order to do so, he also needs to take out a bit extra to create what he calls a "bleeding bone'. This means that the living bone is 'exposed'. The bone will think it needs to heal itself, so will fill in the space left by the bone taken out. It also means that the IV antibiotics will reach the necessary places. As the surgeon said "The goal is to kill the infection from both ends - with the patch in the leg, and through the IV antibiotics. The tricky part is knowing how much bone to take out. Take out to little and the dead stuff will be left behind which means I won't get better, but take out to much and the bone breaks. I won't know the results until after I wake up in the post-op recovery room. After all the dead bone and tissue is gone, the surgeon will put in an antibiotic patch, which will dissolve on its own over the course of several weeks, and then close me back up. If all goes as planned I will do six weeks of IV antibiotics and then maybe a few months of oral antibiotics, and the bone will regrow and all will be done with.
I was a bit bummed out this morning, when I woke up at five am to get a glass of water. I kept thinking, if surgery hadn't been rescheduled, I would have been in the car on the way to the hospital by now. I was joking about all the medical stuff with my mom earlier this afternoon. I said that if I was awaiting something fun, like going to an amusement park or on holiday, waiting a week would not be so bad. I would have another week to anticipate all the fun things I would do. But with surgery, it is about getting it over as soon as possible for me. Although it is an interesting experience, I could really do without it. Hopefully the time in between now and the 18th flies by quickly, not that time ever changes, cause, you know, its time! I can't wait to get on with my life once all of this is over in a few months =)
The main point of this post was to describe what will happen during surgery. Its really straightforward in my opinion. From what I was told, the surgeon will open part of previous incision site. He will use x rays during surgery and my latest MRI and CT scans to determine were the dead bone is, and take it, along with any suspicious looking tissue out. He will keep his fingers crossed that the bone doesn't break. If it does, things turn in a whole new direction e.g. external fixation, so I am really hoping that doesn't happen. The dilemma is as followed: the surgeon has to take out all of the dead bone, and by that I mean all, otherwise the infection won't go away. In order to do so, he also needs to take out a bit extra to create what he calls a "bleeding bone'. This means that the living bone is 'exposed'. The bone will think it needs to heal itself, so will fill in the space left by the bone taken out. It also means that the IV antibiotics will reach the necessary places. As the surgeon said "The goal is to kill the infection from both ends - with the patch in the leg, and through the IV antibiotics. The tricky part is knowing how much bone to take out. Take out to little and the dead stuff will be left behind which means I won't get better, but take out to much and the bone breaks. I won't know the results until after I wake up in the post-op recovery room. After all the dead bone and tissue is gone, the surgeon will put in an antibiotic patch, which will dissolve on its own over the course of several weeks, and then close me back up. If all goes as planned I will do six weeks of IV antibiotics and then maybe a few months of oral antibiotics, and the bone will regrow and all will be done with.
I was a bit bummed out this morning, when I woke up at five am to get a glass of water. I kept thinking, if surgery hadn't been rescheduled, I would have been in the car on the way to the hospital by now. I was joking about all the medical stuff with my mom earlier this afternoon. I said that if I was awaiting something fun, like going to an amusement park or on holiday, waiting a week would not be so bad. I would have another week to anticipate all the fun things I would do. But with surgery, it is about getting it over as soon as possible for me. Although it is an interesting experience, I could really do without it. Hopefully the time in between now and the 18th flies by quickly, not that time ever changes, cause, you know, its time! I can't wait to get on with my life once all of this is over in a few months =)
Wednesday, November 30, 2011
The Patience of a Patient
Having a chronic illness means that I do a lot of waiting. Waiting to feel better after long periods of feeling ill, waiting for pain to go away, waiting in line to fill prescriptions (and then having to go back when I count the pills at home and realize I didn't get enough), waiting for blood tests and MRIs, and most importantly waiting for the results of my latest scans.
Many of my friends and family members tell me that I must have a lot of patience, especially to get through the last few years without depression. Often people tell my how calm I appear in the face of my illness. Indeed I do not often vocalize my frustration for having to wait. It would thus be completely correct for people to comment on how I deal with my chronic disease in relation to others who are often either very curious or very ignorant and arrogant. But on the inside I am anything but patient. For example, between my latest MRI and getting the results on December 8 I have a ten day wait. On the inside the butterflies have formed a tornado in my stomach. I am silently freaking out because the results I am waiting for will determine how I will proceed with treatment, yet my friends can not see the worry I try so hard to keep from them. This illness affects enough of my life. Why should I let it control the social life which I hardly enjoy anymore because I am often to tired to get out? In the end I survive the wait not because I want to or because I am patient enough to do so but because there is nothing else I can do. It's not as if I have a time turner like Hermione Granger and can magically jump forwards ten days. Just because I wait doesn't mean I want to.
The patience of other people is something that sometimes really bothers me. Having to explain to people what a bone infection is can be infuriating because they might not grasp how debilitating a chronic illness can be. In the summer I went to a party and a friend asked me how I was faring. I answered truthfully, that I was doing badly. His response "Still?" People assume that because I am being treated that I am going to get better quickly while the reality of it is that the longer you have a chronic bone infection the harder (and more time consuming) it is to get rid of. There have been people who simply refuse to believe that I am ill. At times I feel that many people in my community seem to think that if a person does not have cancer or some other very well know illness that whatever they do have is not serious. I have had fellow students and doctors tell me that I am faking everything to get attention (not that you can fake pus draining from your leg) and TAs role their eyes when I ask for extensions. People often assume that being ill means being in the hospital attached to IVs, monitors, and a million other things while being examined by doctors round the clock, but their are legions of people who walk in crowds everyday who are chronically ill. Nobody realizes it because very few people talk about it. The subject is almost taboo. Yet when you look closely you can tell who has the tell tale moons under their eyes, ghostly pallor, and gaunt cheeks. With other people it is impossible to tell from their physical appearance. It is hard to watch your friends and fellow students progress with there lives and make plans for the future while you are stuck at home, waiting for doctors appointments and unable to plan anything major because you never know how you will feel. It is especially disheartening when your friends include you in an activity yet speed up to the point were you lag behind and then berate you for being slow. Because the bone infection is in my leg I can not walk very fast but I assure you that if you slow down for me we can still have fun together. My point is that chronic illnesses can manifest in different ways. When people are unwilling to be patient with me it hurts because I feel that I am not longer seen as a worthwhile member of society while I have so much love and care and kindness to give. If only people would talk about it...
I get angry with people who try to help. Foolish isn't it? People go out of there way to be kind to me and I thank them while on the inside I seeth at their audacity. It is not that the help offered isn't appreciated but when people who have never had a serious health crisis offer help it is hard for them to give the kind of help I need. I can not blame these people. I almost envy them for being so naive and ignorant about chronic illnesses. They go about their lives feeling good (physically and mentally) for helping others while I feel shitty for not appreciating them. I have friends who want something to be wrong with them so that they are interesting and get attention but I hate it. I want people to ask me how I am so that I can tell them about all the cool things I get to do and let them hear the music I learned to play on my piano and even tell them about the books I have read. I want to be normal and not have people ask me how I am as a way to inquire about my health. I don't want help because it reminds me of how ill I so often feel.
I am not a very patient patient. I get upset with arrogant doctors who clearly know nothing about chronic osteomyelitis.Yet I do feel that having learned to distract myself with fun things is part of becoming patient, as well as resolving the anger I feel towards being ill. Who or what am I angry at? I am not sure.. maybe just the universe for the lot I got in life. I might never get rid of this infection but if I can accept that and am ok with continuing some form of treatment for the rest of my life which keeps my were I am at right now I think that I would be able to accept that. Maybe acceptance is what patience is?
Many of my friends and family members tell me that I must have a lot of patience, especially to get through the last few years without depression. Often people tell my how calm I appear in the face of my illness. Indeed I do not often vocalize my frustration for having to wait. It would thus be completely correct for people to comment on how I deal with my chronic disease in relation to others who are often either very curious or very ignorant and arrogant. But on the inside I am anything but patient. For example, between my latest MRI and getting the results on December 8 I have a ten day wait. On the inside the butterflies have formed a tornado in my stomach. I am silently freaking out because the results I am waiting for will determine how I will proceed with treatment, yet my friends can not see the worry I try so hard to keep from them. This illness affects enough of my life. Why should I let it control the social life which I hardly enjoy anymore because I am often to tired to get out? In the end I survive the wait not because I want to or because I am patient enough to do so but because there is nothing else I can do. It's not as if I have a time turner like Hermione Granger and can magically jump forwards ten days. Just because I wait doesn't mean I want to.
The patience of other people is something that sometimes really bothers me. Having to explain to people what a bone infection is can be infuriating because they might not grasp how debilitating a chronic illness can be. In the summer I went to a party and a friend asked me how I was faring. I answered truthfully, that I was doing badly. His response "Still?" People assume that because I am being treated that I am going to get better quickly while the reality of it is that the longer you have a chronic bone infection the harder (and more time consuming) it is to get rid of. There have been people who simply refuse to believe that I am ill. At times I feel that many people in my community seem to think that if a person does not have cancer or some other very well know illness that whatever they do have is not serious. I have had fellow students and doctors tell me that I am faking everything to get attention (not that you can fake pus draining from your leg) and TAs role their eyes when I ask for extensions. People often assume that being ill means being in the hospital attached to IVs, monitors, and a million other things while being examined by doctors round the clock, but their are legions of people who walk in crowds everyday who are chronically ill. Nobody realizes it because very few people talk about it. The subject is almost taboo. Yet when you look closely you can tell who has the tell tale moons under their eyes, ghostly pallor, and gaunt cheeks. With other people it is impossible to tell from their physical appearance. It is hard to watch your friends and fellow students progress with there lives and make plans for the future while you are stuck at home, waiting for doctors appointments and unable to plan anything major because you never know how you will feel. It is especially disheartening when your friends include you in an activity yet speed up to the point were you lag behind and then berate you for being slow. Because the bone infection is in my leg I can not walk very fast but I assure you that if you slow down for me we can still have fun together. My point is that chronic illnesses can manifest in different ways. When people are unwilling to be patient with me it hurts because I feel that I am not longer seen as a worthwhile member of society while I have so much love and care and kindness to give. If only people would talk about it...
I get angry with people who try to help. Foolish isn't it? People go out of there way to be kind to me and I thank them while on the inside I seeth at their audacity. It is not that the help offered isn't appreciated but when people who have never had a serious health crisis offer help it is hard for them to give the kind of help I need. I can not blame these people. I almost envy them for being so naive and ignorant about chronic illnesses. They go about their lives feeling good (physically and mentally) for helping others while I feel shitty for not appreciating them. I have friends who want something to be wrong with them so that they are interesting and get attention but I hate it. I want people to ask me how I am so that I can tell them about all the cool things I get to do and let them hear the music I learned to play on my piano and even tell them about the books I have read. I want to be normal and not have people ask me how I am as a way to inquire about my health. I don't want help because it reminds me of how ill I so often feel.
I am not a very patient patient. I get upset with arrogant doctors who clearly know nothing about chronic osteomyelitis.Yet I do feel that having learned to distract myself with fun things is part of becoming patient, as well as resolving the anger I feel towards being ill. Who or what am I angry at? I am not sure.. maybe just the universe for the lot I got in life. I might never get rid of this infection but if I can accept that and am ok with continuing some form of treatment for the rest of my life which keeps my were I am at right now I think that I would be able to accept that. Maybe acceptance is what patience is?
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