Hello form the North!

 I haven't posted an update in a really long time. That really goes without saying but typing out that sentence provides an easy way to start writing this without having to figure out something witty or insightful to say. I don't think there is one single reason I stopped posting. Instead, I have been busy with many different things - thoracic surgery early on in 2019 plus the ensuing recovery; moving four times within the span of approximately twenty months; post-graduate studies; returning to working as a nurse during a pandemic after a prolonged medical leave; exploring different parts of the province; taking advantage of the online course offerings during the pandemic by taking extra university courses; enjoying several of my hobbies, including reading, gardening, and crocheting. I think I just really wanted to focus on living and being present in the moment and, as a result, blogging got placed on the back-burner. I have tried blogging sporadically over the past three and a half year. Sometimes I just stared at a blank screen. Occasionally I erased a couple lines of text. Once in a while I even had nearly completed posts saved as drafts, ready for a final edit. But updating just didn't feel right.

I'm at a point now where things in my life are more settled and certain. I feel like I've really gotten this adulthood thing down and have balance in my life. The pandemic has also given me a much-needed break from dealing with the fiasco that remains my right leg. I hadn't realized how much of my life revolved around trying to fix my leg until the pandemic put a halt to doctor's appointments and planned procedures. Looking back, the break from it all has been more than welcome and, now that I've started seeing doctors/surgeons again, I feel recharged and in a better frame of mind to work on fixing me leg once more. Although I'm not sure that 'fixing' is the right word. We (my doctors and I) know that my leg will never be what it used to be. I'll always have some form of pain and have to remember to pace myself, but we are aiming for less pain and discomfort than I have at present. It seems fitting to resume blogging as this process picks back up again. If anything, these posts will continue to exemplify the impact of what happens when everything goes wrong in the wake of broken leg and chronic bone infection.

This post will remain brief - I'm writing this before I head out for work. I do plan on working on a proper update this weekend. For now, I'll just say that my leg/foot is still crooked and that I now definitively know that I have issues with at least three of the nerves in my right leg (the superficial and deep peroneal nerves and the sural nerve). There has also been some talk about damage or irritation to a nerve that runs behind my knee. My surgeons (there are two of them now) and I have discussed several options for trying to alleviate symptoms - first minimally invasive and, if that does now work, invasive. It feels good to have back up plan if things don't work out with the minimally invasive approach (given my history, everything that could go wrong has, so it is comforting to know we have a plan for all scenarios). I cannot emphasize how reassuring and comforting it feels to have a plan again. As the issues with my nerves increase, I'm experiencing more pain/discomfort and seeing an increase in the limitations caused by my leg. Perhaps I would be willing to leave things as is if I were twenty or thirty years older. As it stands, I am only twenty-nine. My orthopaedic surgeon and I agree that I still have too many years ahead of me to simply accept the pain and limitations my legs causes. For instance, I have moved to a breathtakingly beautiful part of northern Ontario. I want to enjoy living here to the fullest and that means being able to go on hikes - something I am unable to do at present. There was a point around 2018/2019 when I was adamant I would never have anymore procedures or surgeries on my leg. After several years to mull things over (and experience the issues with my leg increase), I feel like I am missing out on too many aspects of life and am willing to go through more medical treatments to obtain those things. I have to believe that those things are in my grasp.

I will leave it at that for today. Here I am, wishing everyone a beautiful Thursday from northern Ontario!

 

It breathes fire

I am fighting a dragon and I am going to win.

I have an appointment with my orthopedic surgeon this Friday.

Over the past eight months, I have gone to a lot of my doctor's appointments alone, from the bone scan and WBC scan in January, almost every trip to the ER, the CCAC clinic, getting my PICC line replaced, to seeing infectious disease and my surgeon. But now I want to hide. I don't want to deal with medical things any longer. I am in this in between phase right now - I can't go back to how things were before... I have no tibia, but I am terrified of going forward. Sometimes I just want to stand still.

Earlier today I told my mum that I would skip the appointment altogether if I lived alone. Nothing (and no one) stopping me from just not going, leaving my doctors wondering where I was. I could stay in this in between place forever.

I am so scared of the fixator, of the pain it will bring. I am worried what will happen if my doctors can't regrow my shin bone; terrified that my body will fail me when I need it to work the most. I feel very very small, insignificant, standing in front of this giant thing... this dragon that I can't avoid. I want to run from it, but running won't help; this dragon sees everything. It is standing between me and the rest of my life. 

I can't stay in this place forever. I want to walk, run, jump, ride my bicycle. So I will go to my appointment on Friday. Mothers are amazing people; they are always there when we need them the most. Mine would drag me to this appointment if she had to. So I will go and I will sign the consent forms for the ex fix surgery. And then I will fight my dragon and I will win.

I have to win.

#feelingbravetoday

Here we go.

Time to leave for surgery. Regardless of what happens with the infection, we will make it ok. I can still be happy and joyful and that an only be a good thing.

Getting close now

Not much longer until surgery now. Less than a day and a half. I can feel the butterflies multiply in my stomach, fluttering around sporadically. I don't know if it is normal to be this nervous or not, given everything I have been through with the infection. More is riding on this than on any of the previous surgeries. I talked about this a bit with my mum this evening. She added that whole "won't have a chunk of your tibia for three months" thing. I try not to think about that... I find it unsettling and quite scary. Before this, I was living on my own, more independent than ever, thoroughly enjoying the nursing program at school, just waiting for bigger better things in life. Eight months and I would have graduated, been preparing to write my certification exam, possibly getting a job offer from my clinical consolidation placement. Now I am home waiting for surgery with a some what vague idea of what the next half year will bring. As if I only have half the pieces for a puzzle.

A friend of my mum invited us over for a bonfire tonight to help distract me. It was incredibly kind of her! The sunset was gorgeous.

Here are some of the pictures I took at the zoo yesterday. As mentioned in the previous post, I didn't take very many.

Breakfast at a local cafe. A meal like this is a big treat; can't believe there are people who have this every morning for breakfast. Think of the cholesterol!

At the orangutans. IV bag in tow... It went better than I expected with the IV. There were only a few instances where a child got to close for comfort.

The two orangutans on display yesterday.

They were holding hands (or feet) for a while, swinging them back an fourth like a couple holding hands while taking a walk. I have a video of it, but can't figure out how to flip video right way up.

One of the two pandas eating bamboo. This was exciting. Last year my family and I stopped at the panda exhibit twice, once when we arrived at the zoo and again as we made our way to the exit at the end of the day. Neither time were either of the pandas doing anything.

Yesterday morning they were napping. But in the evening the one had just been fed =) 

That is it for now. Just trying to keep busy. Made the final PICC line cover today and binge watched some more walking dead. Dentist tomorrow, then perhaps watch the Hobbit or some Lord of the Rings, or go to the book store. Anything to keep distracted.

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.

Five things I`m planning

All of my previous surgeries required relatively short recover period in comparison with the ones I will likely have this fall. the first surgery was at the start of October 2006. I was off of crutches and walking unassisted by Christmas that year, putting the recovery period at just over two and a half months. Surgery two was at the start of September 2008. I was walking on my own in about two months. The last surgery, number three, was mid April 2011 - I was up and walking without crutches within a month.

When I have surgery number four, I will be unable to walk on my leg until the fifth surgery. Given previous experiences, I reckon it will be about another month after the fifth surgery before I am walking unaided again. I am therefore looking at approximately four months of sitting on my butt doing nothing...

... except I don't want to be doing nothing for four months. So I am trying to think of things to do - as of now I have a list of five big things I want to do:

1) Binge watch the fifth season of the Walking Dead on Netflix when it comes out this fall.

2) Learn to knit (I regret not doing this when I had eight months off between completing my Bachelors degree and the start of the nursing program I am in).

3) Complete all of the embroidery squares on the afghan blanket I bought a few years ago - I somehow constantly pick out embroidery patterns and colours but never get to actually working on it. I hope this project will keep me busy and be meaningful once I have recovered - hopefully a symbol of finally getting over this infection (It will be ten years before the bone graft process is complete).

4) Make a giant dent in my ever growing (despite my attempts to purge) collection of books. I would like to read the Pickwick Papers and Nicholas Nickleby by Dickens ad re-read The Lord of the Rings.

5) Review the Latin I learned in University. You know what people say - If you don't use it, you lose it! Latin is also great for nursing - helps with medication names and body parts, so I feel I am doing at least a little something that is useful.

I want to make my time off meaningful. It is devastating to have to pause my nursing education, and to be left behind as my peers move forward, especially those in my clinical group. I hope these activities will be comforting and relaxing, and help me get through something I really don't want to do, even though I know it is necessary and unavoidable. In my mind I see pain and worry ahead, but I also see myself sitting on a porch in the early fall, basking in the warm air and sun, leg propped up with a Penny Press puzzle book while I drink tea and watch the leaves slowly turn to yellow an gold.

Alright... this is likely not going to happen most day. I will spend the first week or so after surgery propped in bed watching tv or sleeping. But I need an ideal to keep me sane and from deciding to not go with the surgeries. The ultimate goal is to get rid of the osteomyelitis. To do that I need these surgeries, and imagining I can sit in the sun with a book after between surgeries four and five will help me go through with it.

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!

Update

I got home for the weekend about an hour ago, and just had dinner. Now that I have had a little bit of time to digest what my surgeon said, I feel like I can actually write it down and reflect some more on it. Before I do that, I will give a quick update on the last few months/days.

Last summer, around June/July, I had a few small painful sores come up on my shin. I was concerned, but they healed after some time. Trying not to jump to conclusions, I assured myself they were either ingrown hairs or a side effect of all the damage from the original break and multiple surgeries and edema in my lower leg.

In September I started having bone and muscle pain. I am a cashier, so I shrugged the pain off to standing all day for long shifts. My previous issues with my leg crossed my mind, but I wanted to believe everything was o.k.

On October fourth, while volunteering at a community harvest festival, I remember turning to my mum and telling her that I thought my bone infection might be back. She was, understandably, a bit upset with the timing of my announcement.

Later in October, I had a sleep over with my best friend, Beth. I remember looking at my leg that night and thinking something was wrong. My leg was itchy, red, and hot. A few days later I had a rash over my right shin, across the scar from the multiple surgeries I have had.

By the end of October, the rash had not only failed to heal, but it had continued to worsen and spread. The itch was indescribable. I also began to experience more bone pain. At the end of the month, I called my Infectious Disease specialist. I had an appointment with her on November 3. I remember telling her that I hoped the rash was not related to the bone infection that we thought I had gotten rid of by the end of 2012 when I stopped all antibiotics in October 2012. She agreed that it could be unrelated but said that it was quite odd that I always had issues in the exact same spot on my right shin. She ordered an MRI asap.

It took a long time to finally get the MRI booked. After several weeks of waiting for an appointment, I called the MRI department, who said that they had recieved the MRI request but had not done anyting with it yet. I scheduled the MRI myself at that point. Meanwhile, the rash continued to itch, the skin would half heal and then flake off, and my leg continued to hurt.

The MRI was on December 23, 2014. Two days before Christmas. I was terrified that the hospital would reschedule, like they did with surgery in 2012 due to short staffing caused by the Easter weekend. All of my previous MRIs have been done with a contrast dye, injected half way through the scan. For some reason, the MRI tech did not want to use the dye this time. I thought nothing of it, thankful that the scan would likely take less time. Half way through the scan, the MRI tech comes in and says that they need to use the dye anyways, because the images looked almost identical to those from the last MRI in fall 2012. This would indicate only minimal or no healing at all. I remember lying in the MRI machine, thinking that I could not go though treating a chronic bone infection again.

I received the MRI results from my ID specialist on January 15. She strongly suspected that I had a lingering infection in my tibia, slowly simmering away. To confirm/throw out this suspicion and to create a baseline for future care, she ordered a bone scan and a WBC scan.

The bone scan was in the last week of January. I know from what the nuclear medicine techs said that there is increased bone activity in my tibia. The WBC scan was in the first week of February (last week Wednesday and Thursday).

Last week Friday, my infectious disease specialist called my just after 6 pm. She told me that the bone scan that I had in the last week of January showed increased bone activity, but that the WBC scan showed "nothing concerning". WBC bone scan, which indicates infection, pretty much trumps bone scan, which can still show healing from my last surgery in April 2012 (debridement, removal of dead bone, putting in antibiotic beads). My ID specialist said that she wants me to come back in ten months for a repeat MRI, just to make sure that spot on my right tibia is healing properly. She assured me that I could come back and see her earlier if I have any issues. I went from thinking that there was a lingering bone infection to being toldthat everything was o.k., and that for the next ten months I should presume that there is no active infection.

I spent the weekend letting all the stress from the scans fade away and catching up on sleep. I was accepting that things were o.k. That my bone infection was not back, despite a lingering feeling of unease, thinking "But why is there still increased bone activity three years afetr surgery?" and "What is the spot on my tibia on the MRI if not an infection?"

Sunday night came around and I was tired. My leg hurt a bit and felt a bit puffy. I ignored this... too busy with school work and getting ready to go back to Hamilton for the school week.

On Monday my leg was more swollen and hot. My shin, around my surgical scar, was an angry red colour. Several small abscesses on my chin formed, opened up, and began draining fluid. The one nearest my ankle, at the end of the scar, began to drain a bit of pus. By the evening I was not feeling good - chills, leg throbbing and stinging, some bone pain. Freaked out by the pus, I decided to go to the emergency room. I got there at about 9:30 pm. The doctor was quite concerned about my leg, but the blood work he had done came back negative. Those results, coupled with the WBC scan results, didn't suggest anything super serious, so I was given a perscription for 7 days of Cephalex, and told to return to the E.R. if my leg hurt more, drained more pus, or if I got a fever. The E.R. doctor told me to call my ID specialist in the morning, and himself sent a a fax to the ID specialist about what was going on. By the time I was done, it was 2:30 am and all buses had stopped running for the night. The E.R. staff was very kind, giving me vouchers for a cab ride home, and calling me a cab!
I was home and in bed just after 3 am

I slept until almost 10 am, and called my ID specialist almost immediately after I woke up. I got the answering machine of her assistant so i left a message along with my cell phone number. in the afternoon I went to get my prescription filled. I was really tired and in pain, so I skipped all of my classes.

The next day was Wednesday. My leg was more puffy and hot and started draining more pus. I decided to tough it out an go to lab in the morning. I couldn't afford to miss more lab classes, since I had already missed the previous week due to the WBC scan. I learned how to perform a musculoskeletal assessment and continued practicing how to transfer and position patients.
My keg throbbed and burned and continued to drain pus. It felt much worse than it did on Monday. My ID doctor had still not called me back. After lab, I went directly back to the E.R.

The E.R. doctor was concerned with my leg. The spot over my shin had turned a deep red colour and was very swollen. He called over another E.R. doctor to look at it. She agreed that it did not look good. They worked hard to contact my ID specialist - she was out of town for the week, which is why she had not responded to my message. She doubled the length of the antibiotic I had been prescribed in Monday (Cephalex) from 7 days to 14 days, and added another antibiotic (Doxycycline) for 14 days as well. The E.R. also got x rays of my leg, which were "better than" the previous x rays. Mind you, my previous x rays were from sometime in 2012. The E.R. was very busy so i did not have time to ask whether "better than" meant fully healed or only partially healed but better than right after surgery.

I went home in the evening and immediately got the Doxycycline prescription filled. When I got home I was tired, so wanted to lie down for a bit. Before I know it, it was past midnight. I had fallen asleep in my clothes, with the light on, on top of my bed. I too my antibiotics and immediately felt sick, throwing up about an hour later (thank you Doxycycline!!! not...). I went back to bed around 2 am, and slept until 11 am. My surgeon's office called and set up an appointment with me for today (Friday) at three pm.

I had clinical practice today from 7 am - 1 pm. I went straight from clinical to the hospital for my appointment with my orthopedic surgeon. By the time I got home I would have had to leave immediately, so it was easier to go straight to the hospital, even if I would be early. Fortunately one of the members of my clinical group, Eva, had to take the same bus downtown from clinical, so we stopped at Tim Hortons for cookies an hot chocolate before I had to catch the other bus to the hospital.

I ended up arriving at the hospital at 2 pm, an hour early. I naturally thought I would have to wait at least an hour ti be seen. Usually you are given a time to arrive, and then have to wait anywhere from a  few minutes to hours before actually being seen by the surgeon e.g., your check in time might be 3pm, but you might not be seen until 5pm, depending on the complexity of patient needs, emergency cases, how busy it is, etc.

I was called in just after 2pm. Turns out there was a long line for x rays that need to be done before the doctor sees patients. Since I already had x rays done on Wednesday in the ER, I was allowed to jump the line and be seen earlier than expected!

My surgeon is amazing - great bed side manner, great at his surgical skills, caring, compassionate, very knowledgeable. Today, he gave m the time I needed to express my fears and concerns. It was much needed. he started by asking me how I was doing and asked me to explain what had brought me to the E.R. I explained everything that I have posted above. He then examined my MRI, bone scan, WBC scan, and x rays. There was a lot of "What is that" and "what the..." when he looked at the MRI. He clearly did not like what he was seeing, nor did he fully know how to explain what it was. He turned to me as said "You have just won the right to get a second opinion by Dr. ----, another orthopedic surgeon at this hospital." He was dead serious, but the way he said it was really funny!

He summarized all of the scans/results:
- The MRI shows some type of fluid within my tibia - not sure what it is.
- The bone scan shows increased bone activity, which is not expected
- The WBC scan is negative, but this can be decieiving (I have add this scan 4 or 5 times before, usually inconclusive)
- My blood work is normal (but it has never been abnormal, even when I was really sick with the chronic bone infection in 2011).
- The x rays show the hole he drilled in my bone in April 2012. This does not concern him, but he is concerned with a "shadow" he sees around the drill hole.

He then examined my leg - prodded the areas around the abscess on my leg pretty hard. I said "That hurts, please don't do that. Really, stop, that hurts." He joked "People come to see me to be in pain." I responded "No people come to see you to get rid of their pain!"

He said that given the MRI, bone scan, x rays, and the swelling and drainage from my leg, it was likely that I still have a bone infection. He needs me to get a second opinion from another OS and to consult with my ID specialist.

I then asked my most important question, and bluntly asked "Can you fix it?", to which he responded,  "I can, but it won't be fun/easy." During my last surgery, he scraped away the dead bone from my tibia. This is very minor to what he would do this time if the infection has returned. He says he think he can get rid of the infection, but it will be major surgery with several steps.

He said that we could do the same type of surgery as last time, simply scraping away any dead bone. The surgery, he said, did work, or at least for two or three years it worked! He, however, stated that once you have already done one surgery once and gotten a certain response, it is unlikely that a second surgery of the same kind would yield different results. I agreed, stating that was the definition of insanity.

So, if it is indeed infection, he proposes major surgery instead:

First, he would remove the infected section of my bone and the surrounding area for good measure - about 1.5-2 inches of bone all the way around, and fill in the area with antibiotics beads/sponges. I am unsure about this part, but I assume my leg would be held together with an external fixator.

He would then close me back up and let the antibiotics do their work for 2-3 months.

Then he would open me back up, take out the remaining antibiotic beads/sponges, take a bone graft from my hip, and use it to fill in the missing bone. The ends of my tibia and the piece of hip bone would likely be held together with a metal rod.

I would then have another 3-6 months of recovery time.

This entire process would take 6-9 months.

This is, indeed, major surgery compared to my previous surgeries.

I expressed my concern, stating that I am a nursing student. I can't take time off from school for surgery, not like I did while in university. He completely understood. He said that I would have to finish the RPN program first (Spring 2016) before I could have surgery. This is about  14 1/2 months from now. Not a brilliant thing to look forward to after graduation... =(

That gives us 14 months to figure out what is going on. My surgeon stated it is unlikely that we could grow anything from any swab samples. He mentioned a needle biopsy, but said those are not fun, and it likely won't grow anything anyways. Not even samples taken from surgery in 2012 ever grew anything. Unless we can accidentally stumble on a magic antibiotic pill that can cure  whatever is in my leg, surgery is my best option.

What I was told today is so different from what my infectious disease specialist said on the phone a week ago today. I will likely be speaking with her in the next week or so to discuss all this. And, of course, my surgeon and ID specialist will be communicating as well, plus the second opinion from another orthopedic surgeon.

I don't quite know how to feel or what to think. I agree with my orthopedic surgeon that something is wrong, most likely infection. Knowing is better than not knowing. Now at least I can set things aside, put surgery in a little box at the back of my mind for sometime spring/summer 2016, hopefully, and get on with school work. I am too busy to spend too much time worrying now. Mid terms are next week, and the end of first semester will be her in no time. Some of my clinical groups and I agree that by the time we get to June or July, the rest of the year will pass really quickly, and then, before we know it, we will be at the end of fourth semester in April 2016. That leaves surgery right around the corner...

I have been scared of  chronic osteomyelitis and surgery before, but I have never been this afraid of what could happen. This is a major surgery, and it terrifies me. I need it to work. I need to be able to get over this and continue to move on with my life.

I will just have to wait and see now what my ID specialist and the OS for second opinion says.

This is my leg right after surgery in April 2012 to remove the dead bone from my right tibia. You can see where the surgeon scraped away bone - dark gray areas.

This is my leg two days ago, on Wednesday, February 11, 2015. In the center is a dark gray spot. This is where the surgeon drilled into the bone. This spot does not concern him, but the shadow around it does.

This is  a lateral view of my right tibia from the MRI done on December 23, 2014. The dark white spot is where there is fluid within my tibia. There is also, as my ID specialist says, "A heck of a lot of scar tissue."

This is the anterior view of my right tibia, from the MRI taken on December 23, 2014. That white spot in the middle is the same as the white spot in the previous photo - fluid in my tibia.

PICC Line Dressing Changed

The dressing change for the PICC line was this morning. It went, well, it went, and not uneventfully. Thankfully the dried blood came off easily, although there is still one tiny spot of scab that is sticking on for dear life. The insertion site also decided to bleed again. Today's home nurse said it is because there is still bruising around the insertion site. The damn thing won't stop bleeding 'till the bruising goes away... who would have thought almost three weeks later?

Half way through the dressing change I was struck with some pretty intense nausea and dizziness. I was so light headed I thought I would faint. I asked my mom for a bowl in case I threw up (thankfully I didn't). Only afterward did I realize how silly I must have looked, hunched over a bowl, trying not to hurl while wearing a mask, and with my harm stuck out waiting for the cleaning stuff to dry! When the line was put in, the PICC nurse at the hospital put the guide wire in before she numbed my arm. None of my home nurses understand why it was done in this order, as, which is a reasonable, the arm should have been numbed first to avoid any pain (it hurt, a lot). I think that because of the way it was put in, I have somehow, unconsciously, become afraid of the dressing changes. I can deal with it being in my arm, I am fine with the dressing changes on my leg and looking at the incision, and have a really high pain tolerance (I can be at 5 out of 10 without needing pain meds, and then my 5 is a 8 to some of my friends). I went unphased by the puss coming out of the incision from my surgery in 2008, and was fine with the abscess on my shin and the bone fragment that came out of it in early 2011, but for some unknown reason I can't deal with the PICC dressing change. But anyways, the dressing is changed and I have a glorious week before it has to happen again.

In other news, I feel pretty shitty. I think that the ten months of antibiotics have really fucked up my insides. I would ask you to pardon the swearing, but I want to blog exactly how I feel, and how I feel is fucked up. In other words, lets just say that the bathroom has been my best friend this past week. Thankfully I see my infectious disease specialist this Thursday, so I can ask her for some advice. My biggest concern with the antibiotics is that there have been several c-difficile outbreaks in the region over the last year. Chances are I don't have it, but because I have been on the antibiotics so long, and have been to several hospitals quite a lot for appointments, I want to make sure that everything down there is as fine as it can be at the moment.

I have also been insanely tired, increasingly so since surgery, which I attribute to all the antibiotics and the shock of surgery itself. I feel like I am back to where I was last summer e.g. sleeping ten hours, waking up, eating and then going right back to bed. Again, hopefully infectious disease has some way of helping me with this.

And lastly, health wise, I slipped a bit down the stairs today. I caught myself, but the muscles in my leg do hurt more than they did before. The outside of the dressing on my leg still looks good, so I am going to assume that everything is o.k. and will as the home nurse to look at it in the morning.

Today was a nice day when I ignore how I feel. My mom and I went to a plant center and we bought some purple/black petunias, and some yellow ones as well. Then we took a nice long drive in the country (the Niagara region is beautiful, even though everything has already blossomed), and found a very, very hidden but still used cemetery. We will go there for a picnic one day as it is right beside a small park/hiking trail. We cam home and had lasagna, hot dogs, and chips for dinner (yum!). And now I am here, typing this all out and about to go read in bed. Hopefully I feel better in the morning.

PICC Dressing Chnage Tomorrow

PICC line dressing change in the morning. That will not be fun... the non-alcoholic cleaning swabs did finally arrive last week, so the insertion site shouldn't sting when it is cleaned, but the site has decided to bleed on and off last over the last 6 days. The blood, now dried, is stuck to a scab that wouldn't come off last week. The nurse wouldn't pull it off then because it hurt too much, but it has to come off tomorrow. My biggest dilemma until then is whether or not to eat before the dressing change. Somehow I think it doesn't matter... I will be nauseous either way.

The dressing for the surgical incision was changed to day. There was still some blood (at least, I hope it was blood) coming from one spot, and everything is still really swollen and numb. Fingers crossed everything continues to heal well. I am still experiencing some bone pain so I am hopping everything is going the way it should, what ever that way may be =P.

Puttering around

I haven't posted in a while. I haven't really felt like interacting with the world. Like an animal, injured by people on the hunt, I have retreated to lick my wounds (not literally of course!). But I can't stay in my house forever. I have to come face the world again. Both the awakening sunshine and the people who stare at me, at my crutches, at my PICC line, at my tubing and IV pump.

My post-op appointment is in the morning, at 11:45am. I would say this is a good thing because I usually get stuck with the dreaded 8:00am appointments, which really sucks when it takes an hour to get to the hospital (Yay! but not so much for waking up at 6:00am when you are ill), but I am up at 8:00 everyday for the home nurse anyways. I know, I know... 8:00am is a very reasonable time to get up, and many people have to crawl out of their cozy beds much earlier than that, but when you have had a bone infection for six years, did nine months of antibiotics, then had yet another surgery, and switched to IV antibiotics, 8:00am shouldn't even be an option on the alarm clock.

I won't lie about it. I have been a bit sad the last few days. I suppose sad isn't actually the right word to describe it. No, I have been realistic. Yesterday was the first day I voiced my concerns to one particular nurse. I am usually quite upbeat when the nurse arrives, but yesterday I really needed a day to vent. To just moop around and let my feelings out. Of course, that wasn't allowed by the nurse. She kept going on how I needed happy thoughts to get better because a lack of optimism decreases the likely hood of getting better. But that's the things. I am not not optimistic. I just see things as they are. I have had an infection for six years. So far my doctors still don't know the type of bacteria causing the infection, which makes it very hard to figure out the best medication with which to treat things. I just don't want to set my expectations to high.

The two weeks since surgery have been mostly agreeable. I went on a nice drive with my mom about a week ago, and than out to Niagara on the Lake for a quick, improvised picnic, e.g. go to the little super market there to buy some drinks, muffins, and a bag of chips, and then go to the park for a small stroll (is it strolling when you are on crutches?) and a scrumptiously simple feast! After tomorrows appointment my mom and I will take the scenic route home, and on Saturday my best friend Beth is coming over for a bit. Next week Thursday I have an appointment with my infectious disease specialist, and Beth is coming with my mom and I so we can go to IKEA together afterward, since it is on the route home. And then on Saturday my opa is arriving from the Netherlands for just over a week.

Physically I have been surviving. The incision site hardly hurt at all compared to the one of the previous surgery. Since I got home from the hospital I have only taken three percocets (really tried to stay away from those as they are so addictive, and they were given out like candy in the hospital) and a few Tylenol extra strengths. But the staples have been pinching like crazy. I will be very happy if they come out tomorrow (fingers crossed). The muscles in my leg are still fairly sore. I can walk on the leg unaided because the bone is strong enough, but the doctor said to stay on them, which is good because if I move a lot (still not a lot) or to quickly the muscles spasm and hurt. Sometimes they just hurt on their own! I have been really really exhausted (thanks a lot antibiotics! - sarcasm), more so than before surgery so that isn't fun. I will bring it up with my surgeon at post-op. The antibiotics make my my mouth taste really sweet, and make my dizzy and drowsy. And as one nurse said, "It is pretty much to get constipated while on Tazocin." I know, tmi, tmi, but my stomach is driving my crazy.

My PICC line thankfully turned out not to be infected. It just really likes to ooze, and since my latest dressing change on Tuesday it has decided to bleed quite a bit. The nurses blame it on using the crutches on the stairs, but it started to bleed right after the dressing change. I think it is just bound to bleed, no matter what. And it is so itchy under the dressing. It would be just my luck to be allergic to the tegaderm!

I am really tired now, so I should get to bed. 8:00am comes to soon... and if I stay up any longer I will be awake when the IV pump goes off for the next dose. It makes more noise at night because there is less fluid in the IV bag because it is the last dose before the bag is changed so the pump has to work harder...its a weird clicking noise that makes it hard to fall asleep. I will try to updates after post-op tomorrow. It will likely be sometime in the late afternoon/early evening as the wait times can be pretty long and I have some errands to run (haha the irony) once back from the hospital. I also have some other stuff I want to post about, so hopefully I will get to that in the next few days.

Surgery - Third times the charm!

I had surgery last week Wednesday, April 18, to remove the dead bone in my right tibia and the surrounding, infected tissue. Here, I present you with my surgery in pictures ('cause I'm to tired to write about the whole thing).

 I woke up at quarter to five to get to the hospital by seven am. I use the term woke up loosely because I don't think i got more than twenty minutes of sleep. My mom and I got to the hospital around 6:30 and went to admitting. from there we were sent to the same-day/short stay ward for pre-op which is on the fifth floor.  Below is a picture os me in my over sized hospital gown. Since I was being admitted overnight, I didn't get to stay in this room. Everyone was really nice. My mom and i couldn't stop laughing and making jokes, and for some reason we found the nurses really funny. Every time they came in they had to check my hospital bracelet to make sure I was the right person. My only complaint was the the IV bleed quit a lot when it was put in.

I look so tired, but couldn't sleep at all, although I was able to lie down for a bit. 

I was taken to the pre-op waiting room (on the third floor) about 8:15. I had to go to the bathroom so many times (thanks to the IV antibiotics I was already receiving -I got Ancef), and as a pre-op nurse said, got to waltz with my IV pole. Everyone having surgery had to wear funny blue hairnets. That waiting room is an interesting experience. I was the second patient there, so I got to people watch as the room filled up... at least 15 people having surgery at one time! WOW! Since I was able to walk to the surgery waiting room I got to sit in a comfy chair, and had a nice conversation with a man having surgery to fix a hernia. He too got to join the dark side with it's funky blue hats.

Here is my lovely (oh so not fashionable) hair net!

I was so cold. The nurse and porter who brought me down kept giving me warm blankets. The porter was joking that I would be as warm as a pop tart!

My surgeon's lovely signature on my leg (don't want to operate on the wrong leg!)

The anesthesiologist talked with my mom and I about a nerve block and something else since I had so much pain after the previous surgery (an unmitigated disaster), but in the end we decided against it. We figured that, although the risk would be small, we wouldn't rick sticking a needle in my spine... I already have one stubborn infection to deal with. Before I new it, it was time to go the the OR. There were at least 7 people in there -nurses, assistants, med students, the anesthesiologist, the surgeon himself. I told them to enjoy themselves, and the next thing I know, I was in the PACU.

After surgery I was brought to recovery (PACU - Post Anesthetic Care Unit) just after 11:30am. I was told most people don't remember much of this, but I remember everything. My pain was mostly a 5 on a 1 to 10 scale, maxing at a 6, so it wasn't to bad  (I know, it was, but I have really high pain tolerance). I was given morphine, which I have had lots of before, and dilaudid for the first time (amazing stuff!). I was allowed to have ice chips at this point, but that was a big mistake as I threw up almost immediately when I arrived in my room on the orthopedic ward. I was in recovery for about two hours. It would have been less, but I had to wait for the portable x ray people, and they were really, really slow.

Here I am just after arriving on the sixth floor in the orthopedic ward. There are a lot of people on that ward, way more than I expected. In the hospital in my region, there isn't an orthopedic ward at all! I was briefly texting my best friend that everything went well. She kindly posted an update on my face book wall because I don't use the internet on my phone.

My blood pressure was really low most of Wednesday. I don't know exaclty what it was at its lowest, but I know at one point it was about 90 over 60, and I felt like I was going to faint. I was really dizzy and drowsy, and dozed most of the day. I know my grandfather has low blood pressure issues, and I think that I might, so I will speak to one of my doctors about that soon.

This was my IV Wednesday evening, just when the saline and Ancef had finished and before I got hooked up to new stuff. Blood had gotten into it, which continued to happen every time I needed the IV bag to be changed.

This is Winks. I got him on my 18th birthday to prove how "not a child" I am. I sat him on the end of my bed until i was discharged.

Still on a liquid diet in the evening. Dinner was severed at 5:30 I think, but I didn't really eat until 7ish. You can't really tell here, but I was really pale. The nurse and my mom kept commenting  about it.

Go jello go! I didn't even touch the applesauce, soup, and tea, and I drank the ginger ale the next day.

By 8pm pain was at about a four, so I was given some stuff for it. I was allowed to choose between morphine and Tylenol extra strength. I took the latter. I was in a room with three other patients - Two women and one man.  The woman across from me had been in a car accident and suffered a badly broken right leg. Her other leg was also pretty bruised, to the point she could not stand on it to get up. She gave some encouraging smiles when my PICC line was being placed. The woman beside me was really old, and I think a bit demented. She had fallen and broken her shoulder and collar bone and couldn't even stand up. Her arms were covered in bruises from attempted IVs. I think the nurses gave up after a while. She was constantly yelling. At one point in the afternoon she kept calling out "Help! Help! I am trapped under a computer!" I don't know anything about the man in the corner, as he was discharged while I was dozing and dealing with the low blood pressure. Another man was brought in around 10:30pm, and he wasn't in good shape at all. I threw up once more just before my mom left at 8:00pm, which is when visiting hours end. It was all bile and tasted really bad. It is really good I only had the jello for dinner!

Almost 1:00 am and the old shoulder lady started screaming. After trying to calm her down for a while, the nurses gave her something to drink, and I think they had put some sort of sedative in there... thankfully. Almost 7am the next day a nurse woke me to take vitals and go the the bathroom (Holy ****, the IV makes you need to pee a lot!). Breakfast was at 8am, and I was really impressed. When I had my last surgery at another hospital, breakfast was served at 7:30 and the food tray taken away by 8. Here, you were allowed to keep the tray/food until the next meal in case you were not up to eating when it was served.

Here I am at 7:00am. I texted this picture to my best friend, Beth, with the message "Good morning sunshine!"

Yay! for a liquid breakfast again. I actually really wasn't hungry, so I didn't mind the lack of solid food at all.

PT came in the morning to get me out of bed (thank god! I could use the real bathroom). They got me up with a walker, but when I told them I was getting a PICC line, they decided to come back later to see me perform (like a circus!) on the stairs with my trusty companions the crutches. The surgeons assistant came to see me, and asked if infectious disease had seen me yet, but they hadn't. Around 10:00am the nurse was helping me up so that I could wash up in the bathroom (that self given sponge bath felt so good =>), when the orthopedic surgeon came in. The nurse kindly held my hospital gown closed a the back. He was surprised that I remembered seeing him in the recovery room. I remember him saying that everything went well, that not as much bone had to be taken out as expected, and that he was going to see my mom. Like I said, washing up felt really good, and brushing my teeth. And when I got back to bed, al, the sheets had been changed! Apparently, the nurses have to give everyone clean sheets once a day... and they felt so nice.

By noon I still wasn't really hungry, but was disappointed when I had to wait for lunch. The PICC like people had arrived. Did you know they can do anywhere between 10 to 35 PICC lines a week? I'm amazed I have never meet anyone with one before, lol The whole sterile procedure and use of the ultrasound machine was really cool, but it hurt when the guide wire went in. that was done before the skin was numbed, and I screamed. the lidocaine burned like hell, and I screamed again, but it was worth it when things were done. The whole procedure went really well and really fast. Hardly any bleeding at all.

After the PICC was placed, I had a chest x ray (in my hospital bed, with the portable machine. how cool is that?).  Right afterwards, PT came again to get me to demonstrate my awesome crutching skills. The car accident woman across from me kept asking to use crutches instead of a walker, even though she could hardly get up. This women, in her late 50's I think, said she had tried them before, but wasn't very good. The nurses had to explain that they usually only recommend crutches to young people who have used them before. Older people are more likely to fall using them as crutches are not as stable as walkers. I felt a small bit of pride in how impressed PT was with me, and they taught my how to go up and down stairs properly.

Lunch was tasty, finally something solid, although I wasn't really hungry, just a bit nibbly-ish. The ham sandwiches were nice, but i prefer them without butter.

Here is my leg early in the afternoon, just before I was allowed to put my pajama pants on.

Afterward the surgeon's assistant came back to ask if infectious disease had seen me yet, but they hadn't, and then the lady in charge of home care came to see me. She explained a lot of things to me and answered man of my questions. Thankfully my mom arrived just before she left, as I would not have been able to remember most of the stuff the the woman said, and relayed it correctly to my mom.

My awesome mom brought me some magazines to look at, and then we sat, waiting, and waiting, and then waiting some more. Around 4:00pm, infectious disease finally got to me. My regularly ID specialist works at another hospital which works with the one I was in, but she couldn't see me, so her college did. She took a lot of time to speak with me an my mom, and answered some of out most important questions. I was a bit disappointed because we originally were told 6 weeks of IV antibiotics, and that being only one injection into the PICC a day. But instead I am doing 12 week, with three infusions of two hours each a day. I am connected to my pump 24/7.

The plan was to hopefully get my home that night (Thursday), but it would depend on if home care could be set up in time and if i could get my first dose of IV medication before it was to late. My mom told the nurse that if I wasn't discharged by 7:45pm I would have to stay the night. The IV supplies would be dropped off at my house at 9:00pm, so we needed time to get home, about an hours drive. By 4:30pm I was finally getting a bit hungry, so my mom went to get me some snacks (I told you my mom is awesome!). She came back to my room and we chilled out for a bit, until dinner came just just after 5:30pm. We were starting to get skeptical about going home that night, so my mom went to the hospital restaurant to get something to eat. Just as she got back, almost 6:30pm, the nurse walked in with my IV meds - Tazocin. This antibiotic has to go through a pump, which thankfully finished infusing just after 7:00. By 7:30 I was discharged, and by 7:45 I was outside waiting outside for my mom to get the car.

This was my hospital bed just as I was leaving to go home.

While sitting outside, waiting for mom, I thought about all the people who had come to see me in one day. I don't really remember the order in which people saw me today, but here is a list:

- Physical therapy (twice)
- PICC line team
- X-ray people
- Surgeon's assistant (twice)
- Surgeon himself
- Home care
- Infectious Disease Specialist

I don't know how they organize it all, but i was very impressed!

And that was surgery. I was home quarter to nine, ready for the home care company to drop of my first set of supplies, and thankful to be in my own bed! One more milestone passed, and one fewer (albeit I don't know how many more) to go.

It had taken my a good part of the day to write this, on and off, so I am going to bed know. Home nurse comes bright and early - as they (who?) say, "The early bird catches the worm."

Brief Update

I am home, but not quite up to posting, so I will just copy and paste what I posted on Facebook at 10:00pm:

I am home. Got home just before 9pm. Surgery went well. Not that much bone had to come out. 2 types of antibiotic beads in the leg, and one type of antibiotic sponge in the leg. Had some trouble with low blood pressure but it is o.k. now. Oral antibiotics have been ordered. Mom is picking them up now. PICC line is in. Calea HomeCare just delivered a weeks worth of IV antibiotics. Will do 12 weeks of them. Home nurse coming at 10am. Really tired. Leg is soar. Throat still hurts from breathing tube from surgery. Glad to be home, but really really tired.

Will post more after the home nurse comes for the first time tomorrow morning.

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 =)

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!

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!

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).

Waiting (Insert Jeopardy Theme Song Here)

What is happening to me? I finally feel like I am really growing up (about time too!), and I am stuck having surgery next week. Sometimes I feel like I am no further than I was six yeas ago, well, minus the high school diploma and two years of university (half way to a degree!). I think, once surgery is over, I need to start rediscovering what normal is. My friends want adventure and excitment in their lives; I will be content with boring and the monotony of everyday life  for a while.

I was happy today. Tired, but happy. My mom says she can tell that the tension is building as we wait. I start to ramble on and on when I get really nervous, so the next few days should be fun! I think my mom will be ready to kill me by the time we get to the hospital Wednesday morning. An hour with a nervous me in the car at 5:30am is enough to get to anyone. I call it payback. She will have coffee and a sandwich with her. I won't be allowed to eat/drink anything.

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.

Bravery, Expectations, and Pity Not Allowed

Did you know that I was scared, when you told me how courageous you thought I was? People keep telling me that I am brave. But I am only trying to survive, just like everybody else. Do you know that I am still afraid, regardless of how much I have been through?

I find it degrading when you tell me that I am brave. Many people have this idea, this misconception, that going through hardships teaches people how to behave admirably. I am not interested in learning how to live, nor gaining people's respect and admiration. No, I am far more concerned with trying to get my life back so that I can live.

When you tell me that I am brave, you are telling me that you have expectations you wish me to live up to. There are all these things you ask of me, which in all honesty, you have no right to ask. I will not wake up and set out to do things I do not have the energy for. I can not walk through the pain. And I refuse to put on a smile so that people do not feel uncomfortable around me. If you expect great things from me while I am ill, you will be greatly disappointed.

I don't know if what I just wrote makes sense to anyone reading it...it does to me and I suppose the point of this blog was to document my experiences. If the documentation seems confusing, that's because the experience is. But, let me try again. There are two things with people, in relation to my bone infection, that I have a problem with.

One. People tell me that I am brave, and I can't stand it. Being brave implies that I am doing something, preferably by choice. I am not choosing to do anything other than listening to my doctors tell me that what they propose could cure me. I am not choosing to have a positive attitude and to fight. You can not fight a bone infection, you can just hope that antibiotics and surgery work. With being brave come expectations e.g. being patient, walking through the pain (both literally and figuratively), not letting myself get down, always looking on the bright side. I could go on and on. When people call me brave, courageous, fill in the blank as you choose, they expect certain behavior. When I do not live up to that behavior, I let those people down. To be a good patient, I cannot show how sick or exhausted I feel, because it means giving in. As if my recovery is 100% based on my attitude, that if I do not smile I will not get better. I am told that I cannot show that I am ill, and I find that very degrading because, well, being ill has become part of who I am. Would you tell a cancer patient on chemo to run a marathon, or a paraplegic to get up and walk a mile? No? Well, it is also inappropriate to expect someone with a bone infection in their tibia to do the same.  But not only do I let people down when I cannot meet their expectations but, I also provide them with something to degrade. The whole point of being ill is being ill. To tell me that I have to behave as if I am not ill when I am denies my my right to express how I feel. Being brave implies maintaining your dignity, but that is the one thing you do not have when you are chronically ill and needing surgery. Would you feel dignified if, at 19,  you had to get a sponge bath from you mother? Me neither. If you cannot accept me how I am, sick, then you should have no expectations of me. The point - do not call me brave; I cannot live up to the expectations and I feel that it degrades me. 

Two. I am not your source of entertainment, and I am not something to be pitied. I had friends. People who still contact me, but only to find out how I am doing in regards to my bone infection. They do not care if I am enjoying my university classes, or how well I have gotten playing a new song on my piano. They are not people who will come to the hospital with me, or send me encouraging messages. These people are not my friends anymore. I do not accept their flimsy comments. These are the people who always try to relate what I am going through to themselves. The ones who feel they know exactly what I am going through because they once twisted their ankle and were on crutches for a week. I actually had a friend once who told me she knew exactly what I was going on because she once feared she would need surgery. She had hurt her knee and was angry that her doctor who, after ordering an MRI, said the best remedy was to stay off the leg for a few weeks, which she promptly decided not to do, and not surgery. Months later she says her knee is fine. I am getting ready for my fourth surgery, after six years of being ill. I really don't think she understood. The thing is, the people I know who are healthy seem to want to be ill, as if it is cool, an easy way to get attention and sympathy. I am ill, and those are some of the last things I want.

One final comment that I feel the need to share. Some of the people I know think that bone infections are not serious. They say nasty things to me, and tell me I am over exaggerating. Its like if you don't have something serious like cancer or kidney failure, people won't accept that you are ill.  Well, I have been ill for six years. I have spent an unknown amount of time on crutches, limping around, and not being able to do the things I want to. I have experienced extreme bone pain and know what it is to be completely exhausted.  I have slept 16 hours straight, woken up, and gone back to bed several hours later. I have had way to much blood work and a wide variety of scans, painful surgeries, and bone chiseled out of my leg. I have had pus pockets, edema, sequestrums, and bone fragments randomly come out of my shin. And at the moment, almost all the people I know who have just finished treatment for a bone infection are finding out that treatment did not work, and that the bone infection is still there.

I do not want to be brave. I do not care about you expectations. I certainly will not accept your pity. I am ill and I am afraid, and I just though that you should know that.