The great wait

I just took my last dose of Septra, the antibiotic that I have been on for the last month.

For most people, this wouldn’t be a big deal. If you have been prescribed a simple seven day course of antibiotics, the only significant thing that will change in your life is that you will be rid of the inconvenience that is having to remember to take a pill once or several times a day for a week.

So why am I blogging about this? Not really a big milestone or anything, is it? A pill is a pill is a pill regardless of what it is for… nothing significant. Loads of people are prescribed antibiotics every day; it is common place.

Except it is not, or at least not for me. Other than a few days in the middle of February and a week in May that I now regret, I have been on some antibiotic or another since the 9^th of February. That is almost eight months and a hell of a lot longer than the standard seven to fourteen day course of antibiotics. After all that time, it will be lovely to no longer have to remember to take medication. But the convenience of not having to take medication is not why I am blogging.

The antibiotics I was on (Cephalexin, Doxycycline, Septra, IV Vancomycin) where prescribed to keep the bone infection under control. Without them, the infection would flare up, causing sinus tracts/sores to form on my shin, fatigue, and an increase in bone pain. When we realized that the infection was getting worse anyways, the antibiotics were there to tide me over until surgery so I could finish the semester at school. And then, most importantly I think, the antibiotics were there to mop up any infection that lingered in the soft tissue/muscle after the surgery to remove the infected section of my tibia.

In a way, the antibiotics have been a life line for the past eight months – a security net of sorts. They carried the promise that the infection could be cured or at least controlled. By taking those little pills, either chalky white, foul smelling orange, or tiny round like an m&m, or hooking myself up to the PICC line I had, I felt like I had some control over the situation. At least I was doing something.

But not anymore. I just swallowed the last pill. And now the great wait begins to see if the infection is actually really gone or if it will rear its ugly head again. I am excited and hopeful that the infection will not return. I have to be, because I need something to cling onto right now – I am missing 2.5 inches of my tibia, I can’t walk without crutches, I have bone pain, and I have placed all control in the hands of my doctors and their confidence in their ability to regrow my bone and get me walking again. I am in no man’s land right now; I can’t go back because I have no tibia, but I can’t go forward until the next surgery in 7-8 weeks. It is frustrating, the cast is uncomfortable, the ends of my tibia hurt. So I need something good to come my way, and not having symptoms reappear once I stop the antibiotics is that good thing.

On the other hand is fear and trepidation. This is the moment I have been waiting for. What will my body do? It has failed me in the past. The last time around I had every reason to believe the surgery in 2012 and the 16 months of antibiotics did their job and the infection was gone. And then it came back anyways. I am terrified of the idea that this could just keep coming back again and again, over and over for ever, or that it will never go away, not even for short periods of remission.

Swallowing this last pill today is a big deal for me. More than big. It is milestone. And now the wait begins. I think we can all agree that waiting is hard, and it is worse when you are waiting for something bad to happen. That is how I feel right now, that the infection will come back. I want so badly to be healthy, normal. I don’t have dreams of exotic vacations, an expensive new wardrobe, making lots of money, being famous. All I want is to be healthy. I do not know if I can convey the intensity of that. Yearn is a good word. My body yearns to be healthy again. I am so incredibly tired of being exhausted and feeling blah. To just wake up in the morning feeling refreshed…

I have been completely knackered the last few weeks. Things were improving after surgery, but then it is like I hit a brick wall. Living with a chronic illness is a battle. Every morning I wake up and the first thing I do is evaluate how I feel. Most days I am on the losing side of the battle. I sit up, look in the mirror, and think “Bummer, I still look horrible and I’m still exhausted”. My face looks drawn out and thin, eyes barely open. I have lost before I get out of bed. How tired I look has become a common point of conversation between my mum and I. I feel like a zombie most of the time. We are starting to get a bit concerned. We have several theories of what is causing the fatigue: my body could be trying to reject the cement spacer; I could be using up all my energy in a futile attempt to heal my leg; long terms antibiotics can cause severe fatigue; or the infection is back. My infectious disease specialist couldn’t stress enough at my last appointment on Sept. 15 to call her if we had any concerns. She said to call for even the slightest thing. Perhaps I should call her. I do see my orthopedic surgeon this Friday. I will have a good talk with him, and I am guessing he will call infectious disease while I am there because honestly, I look like crap and being this exhausted could be a sign that something is amiss.

Other the fatigue and anticipation to see what happens now that I have stopped my antibiotics, the last few days have been good. I got my hair cut last Friday. On Wednesday morning my aunt came over for a few hours. Yesterday mum and I went out to Niagara on the Lake. We actually got out of the car and walked down both sides of Main Street. My leg hurt a lot after but it was worth it. Being able to put some weight on my leg while using crutched definitely makes going out easier. Mum thought it would be a bad idea because I was so tired, but I reasoned “I am exhausted either way. I can either sit on my bed at home watching day time tv feeling tired, or go out, have some fun, and be tired anyways”. Today was a slow day. I coloured a bit in the morning, worked on my embroidery project most of the afternoon and evening, and went to a motorcycle shop in the afternoon with my brother so he could pick up his new leather chaps and jacket and I could get him a gift for Christmas (cause I am not braving the mall when I have my fixator next month). It got really cold today so I am staying toasty under a mountain of blankets, sweaters, and comfy socks. I am trying to take it easy and be kind to myself. I hope tomorrow is a better day energy wise. At least I can always sit in a comfy chair with a magazine or my embroidery. It’s the little things that count =)

My colouring. Seems appropriate given the weather =)

Where I am camped out most of the time... sea of pillow and blankets.

The last pill.

Comfort and coziness

I made my bed today for the first time since surgery almost a month ago. It felt nice to do... normal. Even though I broke into a sweat spreading the sheets over the bed and arranging pillows, it was completely worth the time and effort. I am getting used to the reality that everything takes so much longer and so much more energy when you can't walk without crutches. I forgot about that since the surgery/PICC line in 2012. The hardest part was probably trying to lean over the bed to tuck the sheets between the wall and mattress while also trying not loose my balance.  I don't know how long it actually took my to do today, but way more than the 2-3 minutes it would normally take.

My days are usually pretty slow, other than an occasional smattering of doctors’ appointments. I am fairly tired most of the time, but I think that is to be expected. I have not been sleeping very well. It is hard to get comfortable with the cast. I have always rolled around a lot in my sleep, which doesn't help either. I will wake up in the middle of the night to find my leg hanging precariously on the edge of the mountain of pillows it is resting on, about to fall out of bed. Being comfortable can take a while. I look forward to the day I can sleep on my stomach again. Now that it gets colder I am actually getting under my duvet instead of sleeping on top of it with a blanket over me (hence the need to start making my bed). Last night I had the duvet and two extra blankets but I couldn't get warm for the life of me. I am not sure what to think of this; being cold was an issue with the bone infection before surgery, but I haven't had to deal with that since, so I am hoping it is weather related and nothing else.

My bed... not that anyone really cares XD I am just disproportionately proud of completing this simple task after so many weeks of being unable to. All the nice pillow cases are in the wash, so I got of the flannel ones.

Making your own bed (and even stripping it down and putting clean sheets on it like I did today) is such a simple task. Most of us probably do it real quick every morning and don't give it a second thought, or we don't make the bed at all, leaving the blankets scrunched up at the foot of the bed or something. When you become ill, simple daily household tasks like making the bed or putting dirty linen in the laundry hamper become these huge looming mountains that seem impossible to summit. Everything is so hard to do that it becomes a big deal when you can finally do something yourself. There is pleasure in doing things like making the bed. I think we run around in this crazy busy world, always working and trying to make money and a name for ourselves, trying to find the next big thing to accomplish or a spectacle to watch (or even be a part of), that we forget how beautiful ordinary life can be.

I am not sure where I am going with that thought... just something I have been thinking about the last few days. Always, back to where we started. I made my bed today and fluffed all my pillows up a bit; place big check mark beside comfort!

Now let’s get to being cozy. As I mentioned, it has been getting colder over the last few days. I think it was only ten degrees outside last night around eleven or twelve. With cold weather, dreary skies, and the inevitable rain it is time to break out the flannel pajama pants and slipper socks! Mum and I went out for a couple of hours yesterday afternoon/evening. First we went to this place called Happy Ralph's (I wore a sweater, and that's saying something because curtching around is hard work that usually results in me overheating or getting sweaty... or both), which somewhat resembles a mini farm, with goats, chickens, donkeys, alpacas, cows, bunnies, ducks, turtles, sheep, a pony and I think  a llama. There was a calf and a baby donkey. Then we went to get fries, drove to Niagara-on-the-Lake, down the Parkway, and ended up at Walmart. I had a lovely time, and it was good to simply get out of the house, to see other people and things. And I got some new pajama pants! 95% of my time is spent in pajama pants. They are by far the most comfortable thing around when you spend the majority of your time sitting down/in bed. And I dug out the slipper socks I bought a month or so ago. So, not only am I comfy with fluffy pillows and fuzzy blankets, I am now nice and cozy. Bring on the cold weather! But only the cold... we don't need any snow or worse... ice, with the whole being on crutches and missing a chunk of tibia thing.

As previously stated, it was lovely to be out with my mum for a few hours. Crutching can be quite tiring, especially if you can't put any weight on the one leg. I did it last week when I had both doctor’s appointment on the same day, and man did my arms hurt the next thing. I tell you, crutches are the perfect ab work out. Anyways. With the cast I have now (a patella tending baring cast), I am allowed to put some weight on my right leg and walk on it a little when using my trusty crutches in case things go horrible wrong and to still support most of my weight with. So that is what I did yesterday. There is a big difference between being on your feet a couple hours like I did yesterday and the little bit of moving around I do at home. The ends of the bone, connected to the bone cement, definitely hurt when I walk for a bit. Not cool. I had quite a bit if pain last night, some bone pain and some pain related to swelling I think. My shin felt like it was super swollen and pressure was building up inside. It feels a lot better today re bone pain (although the muscles are still pretty sore). As with the being cold thing, I am not sure what to attribute the pain to. Some of it felt similar to what I had before surgery, but it could just be a swelling thing or the "holy crap your putting weight on your leg which is pushing the raw end of the bone into the bone cement" thing. You don't have surgery in the same spot four times without some permanent issue coming up. It makes it hard to gauge what it normal or concerning given the circumstances, and having the cast on doesn't help anything because I can't see what is actually going on. I wish things with my leg didn't feel like they were in limbo, in between surgeries. Will there ever be a day when pain, a bit of redness, the odd twinge or spasm, etc. doesn't make me worry that the infection is back? I hope there is. I am tired, and I don't think I could do this again. I know, I have said that before. And the human body and mind have a tremendous ability to coop and adapt to "a new normal". Everything is relative. But I just want to get on with my life. Not to contradict what I said earlier about the beauty of ordinary life. I just want to graduate, pass my nursing certification exam, and lead a quiet simple life. One day...

As for the walking on my crutches - If I don't have anywhere to be/am not in a  rush, I will walk slowly on both the legs and my crutches. But if I need to be anywhere fast I won't walk on the leg. Hoping on my left leg is much faster.

That is it for now. There is not much to post about at the moment. A friend is coming over on Thursday to watch movies, and I heard talk of her brining brownies; I am really looking forward to that (both seeing my friend s and the brownies). And I think my aunt might come over on Wednesday. So there is some stuff to look forward to. And I am making a lot of progress on my huge cross stitch project. I will post on that once I get a bit more done. And I got a new book to read: "Secrete religions: A complete guide to hermetic, pagan, and esoteric beliefs" by Davis Barrett. It is on my list of things to read now, after I finish "A brief history of the druids" by Peter Berresford Ellis. Oh, on top of that I got some of my university textbooks on Vikings from the basement (another first today - first time in the basement since surgery). All good, simple, pleasurable things. =) Now I can sit on my nice clean comfy bed in my new cozy pajamas and slipper socks with a hot cup of tea reading a good book. Definitely comfy and cozy!

If only it were that simple

I couldn't sleep last night, so I coloured a picture. Then I added my own twist to it.
If love were enough to fix my leg, I would have a new tibia by tomorrow morning.
As it where, that is not the case. But I will continue being nice to myself (and my body) none-the-less. My leg has been through a hell of a lot, but the hardest work is still coming. Hoping it is all worth it in the end =)

Appointments tomorrow

Clean! Again!
And that can only mean one thing.
I am leaving the house tomorrow to go see my doctors.
It is actually a bit of an exaggeration to say that I don't leave the house (or shower) unless I am going to the hospital. Today, for instance, I went with my mum to the car dealership to test drive a new car, and then out to get some goodies to eat (because I totally deserve junk food for sitting on my butt all day). But I didn't shower (although I did on Saturday). I just put on a hat. There. Problem solved.

And then I showered this evening again. I even used my loofah on the toes of my leg in a cast.
In all seriousness, everything takes ten times longer and loads more energy when you are on crutches/have a cast/can only put weight on one leg. Being able to do things quickly and for ourselves is something I think many of us take for granted. In many ways, this is a very sobering experience and helps us get our priorities straight. Life should not always be one big rush.

Anyways, I am getting side tracked here.
Tomorrow morning I have an appointment with my infectious disease specialist. Here is to hoping that the sample taken in surgery grew something. The surgeon took fifteen samples. I only need one to grow something. That's not asking very much, so I hope we get something out of it! That was supposed to be it for tomorrow.

But it's not.

About a week and a half ago, I saw my surgeon for my post op appointment and had the nasty heavy plaster back slab cast thing swapped for a fiberglass patella tendon bearing cast. A day later I ended up in emerge because my toes were going tingling and going numb, and all around discomfort in my leg. The doctor I saw cut one side of the cast open to allow for swelling and then wrapped the cast in ace bandages to hold it together. He told me to follow up with my surgeon before walking in the cast and to see if the cast needed to be replaced. Then commence the long weekend. I called the fracture clinic Tuesday morning, leaving a detailed message about what happened, and asking if I should come in or not. Nobody ever called me back. I tried a different number this morning, which got me through the my surgeons office instead of the fracture clinic. The receptionist was very friendly and helpful. I explained the situation but she said no message had been passed on to her. She put me on hold for a while to make some calls. When she got back, she said I can see my surgeon tomorrow at the other hospital he works at since I've already been waiting over a week since I was in emerge and Friday is still quite a way off from now. Awesome! Two bird with one stone. Erm... or two appointments with only one drive instead of having to drive up on both Tuesday and Friday. The first appointment is at 9:30 and the other is not until 1:00, but I am sure mum and I will find some way to amuse ourselves. If nothing else, I will treat her to coffee or some of that delicious hospital cake I love so much!

So tomorrow will be a good day: See infectious disease, see my surgeon, get a new cast, probably new x rays, get out of the house, and something good to eat.

Fingers crossed that all goes well!

By the way...

... If I am going to do something, I am going to do it right! Apparently, according to my surgeon, I broke my tibia in the perfect spot. The bone infection (and now the lack of bone) is in the optimal spot for an external fixator. This is awesome news, or as awesome as needing a fixator can be.

Go me... I think!?!?

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.

Tomorrow

The day is done; it is time for bed. No more waiting. I cleaned and vacuumed my room, did all my laundry, showered and packed, and had a last snack before midnight. Nothing left between now an surgery. At 4 I will get up to go to the hospital and before I know it, it will be over and I will be waking up in the recovery unit.

I went to the dentist this morning; nothing like that dentist clean feel when you run your tongue over your teeth. No cavities this time, which is great, and still no issues with my wisdom teeth. Then to the bookstore. I found another cross stitch magazine with another cross stitch kit. Looks like a get well card to me. Perfect timing! Also another magazine. Addicted much XD This one is like a ray of sunshine, pretty and innocent and only good things to look at.

Owl sticky notes I found at the Dollarama.

And fancy duct tape! Will need it to shower with a garbage bag over my leg after surgery so the incision and cast do not get wet. Looks a lot nicer than the grey stuff... makes an unfortunate situation a tiny bit better.

And this is Staph. Staphylococcus aureus. The bookstore on campus sells a large variety of them: black death, tape worms, ulcers, cancer, etc. Seeing as we think I have Staph. aureus and negative coagulase staph., this one seemed appropriate. I should really have made him a little white flag to surrender with...

That's it really. Just like the last surgery way back when in 2012, I can feel myself blabbering away nervously. On top of that, the more nervous I get the more easily I react to everything... not exactly friendly all the time anymore. My family is awesome for putting up with me. Time for bed now. Wish me luck! Heck, even tell me to "break a leg!" That is literally what will be happening tomorrow.

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.

Twenty three on the twenty third

I celebrated my 23rd birthday today with my mum and brother. They treated me to a wonderful day out: Breakfast at a local cafe early this morning (I didn't think I could eat so much toast, sausage, and egg!), followed by a day long trip to the Toronto Zoo, and concluded with some very lovely gifts. I am one very fortunate and well loved girl!

Not many pictures taken today. We spend way too much time with our noses pressed up against a screen. Today was all about enjoying the moment and getting the most out of the zoo. I will post the few pictures I have tomorrow; most are of my family and I.

Today was a day I have needed for a while. It was a long time coming. Surgery did cross my mind throughout the day. There would probably be something wrong if it didn't especially seeing as it is this week. But I didn't talk about it. I made a point not to mention it, and that felt wonderful! Surgery wasn't the thing going on today. I had other plans which included my family, celebrating, and seeing a ton of animals, and having fun, feeling completely happy and relaxed. I think I have been grinning since the moment I woke up this morning. So I put the thoughts of surgery aside, didn't mention them, and just enjoyed the moment. I feel content and peaceful, refreshed. I feel like I remember what it feels like to be healthy and young and normal, doing the regular things my friends are able to do. I can get through the next two days until surgery: Dropping off the keys to my old place tomorrow and going to a bonfire in the evening, going to the dentist Tuesday morning (nothing like that clean teeth feeling), and then just relaxing the rest of the day, enjoying some puzzles or a book. Wednesday will be here before I know it. Despite all my fear and apprehension, today gave me a glimpse of what I want to get back to, and has encouraged me to continue fighting the infection and, more importantly, believing that I can beat it. This is something I have been missing over the last weeks.

Last year, I turned 22 (obviously, captain obvious). About 6 weeks later I told my mum that I thought my bone infection was back. Chronic osteomyelitis has played a continuously bigger role in my life since then and is one of, if not the single most significant thing that happened to me in the past year that sticks out to me as a reflect on everything that has happened, from moving out, to starting nursing school, and gaining more independence. It has governed over everything I have done, from attending clinical placements, completing school works, energy levels, and sense of well being. Medically speaking, the following year won't be fun. Two big surgeries, lots of pain and many new scars, more oral and IV antibiotics, uncertainty, scans and doctors appointments. The list could go on. It can't be classified as fun by any standard. But I will get through it, and in the present I can make today o.k., if not the future. If I wish anything for my birthday today, I hope for my health back; that the infection can go away for good. I hope to be infection free this time next year, celebrating both my 24th birthday and a year of good health to come!

I am going to call it a night now. I am exhausted, but in a good way. The zoo and the time spent with my family were completely worth it. This was the last big thing before surgery, and it was so positive and encouraging. I will go to bed feeling content and very very very much loved.

Apparently...

I turn into a hedgehog after I shower and towel dry my hair.

I think it suits me XD

My final exams were on Monday (Developmental Psych and Health & Healing) and Tuesday (that dreaded Health Sciences), and my clinical examination (OSCE) was Wednesday morning. I didn't think it was possible, but I actually made it through the week. Last week while I was madly studying (as all students really should do before exams, but who am I kidding, at this point of the semester everyone - including myself - looses all desire to study at all), I could have sworn time would just stand still and exams would never happen. But here we are, Friday night, and they are all done! Despite being quite ill and very very very stressed throughout the semester, I have done remarkably well. I exceeded any and all expectation I could possibly have had for my self, even if I was healthy. My marks are beautiful. More than beautiful. Despite all the unpleasant medical things going on and surgery looming close by, I worked so incredibly hard (in a way to tell the infection who really is boss... it can't get the best of me), and it paid off. I am waiting for the results of one more exam and also a small five percent project from several weeks ago, but given all the other grades my average will be in the mid nineties!

My arm continues to burn, sting, and itch. I don't know how much I had really updated over the past weeks. I apologize if I have already mentioned this - I am likely allergic to the PICC line itself. Sort story is, as I kid I could never wear rubber boots without my feet/legs breaking out in a itchy red bumpy rash. Rubber boots are made of polyurethane, the same material PICC lines are made of...

The insertion site continues to leak. I went to the ER in St. Catharines two Sundays ago. The doctor took off the statlock and stitches the PICC to my arm. We also started using dry dressings instead of of tegaderm (pro: no statlock, tegaderm, adhesive to react to, con: dressing change every 2 days rather than once a week, dressing slides down arm over the course of the day, less protection from bacteria, etc). The leaking from the insertion site gets trapped between my arm and the PICC line, causing blisters, irritation, etc. On top of that, the PICC itself causes skin irritation and breakdown, leading to blisters which burst and now won't really heal, so also leak fluid. It burns and itches and makes me cranky. 

The is my left arm the day the first PICC was pulled out.

My arm a few days later...

Ice helps relieve the itch a bit.

 New PICC line in right arm, placed on July 30th. This was July 3st, I think. You can see dried gunky stuff just below where the PICC enters me arm, on the statlock.

Army of little blisters caused by the paper tape used to hold the dressing the ER but on after putting in the stitches.

All the blisters around the line. They have mostly healed now, but not after bursting and hurting like crazy.

Most of the blisters have completely healed now, but the site under the PICC is slowly getting worse. I was in the ER in Hamilton on Monday to deal with it. The stadd were amazing. They had now clue how to fix it, but agreed I am likely allergic to the PICC itself. The nurse and doctor I was assigned to asked pretty much every other nurse and doctor who walked by what they thought they should do. They called the IV nurse and  PICC nurse down to have a look, and a PICC nurse at another hospital. They tried getting hold of my ID specilist, which didn't work, so called another one instead. Only options were to leave it in and live with the itch/blisters, or pull it and risk it with just oral antibiotics. They advised me to keep it, which I agreed to. My nurse had a really good idea to use this grid like sticky material - thread it under the PICC to keep it in place and provide some airflow so the skin could dry and heal a bit. We would have to clean under the PICC first, with sterile saline and a long cotton swab, but it was way to painful. I swore. Multiple times. Loudly. Before asking the nurse to stop. She said it looked like the PICC was embedded in my skin. So we couldn't go through with her super cool dressing idea that I think could actually have worked really well.

I was back in the ER on Wednesday after my OSCE because my line would not give blood return and had some resistance flushing. The ER waiting room was completely full. Here comes the plus side of being in the ER 8 times in a month: all the nurses know me. They jumped me to the front of the line and had me sorted out within ten minutes. Turns out the blue connection thing (see picture above) is incompatible with the PICC. We already remove the blue piece that comes with the extension tubing for this reason, but apparently this piece has the same issue. My nurse told me to throw a fit at anyone who tries to add another blue piece to my set up. The line also had a bit of resistence, so they flushed it really well with five or six syringes of saline until things went in smoothly.

Lo and behold, this morning there was not blood return (even though there was yesterday). But it flushed fine, so I will leave it a bit and see what happens tomorrow morning.

Infectious disease is on holiday somewhere or something, so I haven't heard back from her. Hopefully Monday or Tuesday. Open raw wet skin can only increase the risk of infection around the PICC line. Hopefully she can sort something out. I need the itch to go away.

And that is it for tonight. Still a bunch I want to catch up on (eight ER trips between getting the first PICC to now...). But I am knackered. Time to brush my hair (aka de-hedgehog myself) and get some sleep.

"It" Happened

"It" being the PICC line, a dreaded but necessary evil.

Well, not quite.

For now I have a periphery IV, but the goal is to have a PICC line placed sometime early next week. At least the iv is in my left forearm, so I can still do things (you don't realize how many things require moving your elbows or wrists until you can't move use them at all). And my writing hand remains free - no pass on school work. Bummer. Kidding. I am a nerd. I love school.

We aren't really sure why I keep having issues (read: new small sores opened on shin at the start of the week). Theoretically speaking, I am on so much antibiotics that the infection shouldn't be doing anything at all. But here we are, anyways. It is quite frustrating. After becoming progressively more and more tired, yet sleeping as much as 15 hours yesterday and not feeling any better, I said enough is enough. No more toughing things out.

Long story, which I won't tell tonight because I am fried: I ended up in the emergency room. My infectious disease specialist and the E.R. doctor spoke over the phone. And I am not the proud owner of a periphery iv that got to come home with me, and nasty bruise forming around it, and bruise int he other arm from when the nurse had to re-do my blood work because what she got wasn't enough (she was really kind and did her best! not her fault my veins are shoddy after so many pokes over the years).

I will likely be on IV vancomycin until surgery on August 26. It might be switched up after that, depending on if the samples sent to the lab grow anything or not (lets all keep our fingers crossed that those little bacteria calls grow... but not in me; in a petri dish!).

I am not waiting for the pharmacy to deliver my iv pump, iv pole, medication, and other paraphernalia. Tomorrow I have my first appointment with CCAC. It is not until 11am, so at least I can get a lot of sleep tonight.

I have lots to write, but I am crashing hard, and that is saying something, because I was already like a zombie when I woke up this morning.

Here are some pictures from today. They are crappy, taken with my phone, but they show how horrible I felt.

At home this morning, after I saw sent home from clinical

In the emergency room, waiting to be seen. My eyes where burning at this point. That is how tired I was...

My lovely new fashion accessory. I don't like it, but it might make me feel better... or at least the stuff pumped through it.

Infusing. Only took an hour, and after that I was done and free to go!

I blogged a month!

It is a month! Today, May 20th, I have blogged every day for a month! When I started on April 20th, after coming home from a CT scan, I wasn't entirely convinced I could do it, but here we are! Now I am not sure if I am disappointed or relieved that it is over, or if I will continue posting everyday or not. I will likely not post every day, what with school and the redundancy of posting "my leg hurts, guess who has night sweats, I hope surgery will be scheduled soon" all the time but I would very much like to continue to blog at least every few days. I have found it very calming and therapeutic. It really helps to type out my thoughts and get them (more or less) organized instead of having them fly like bees in a honey jar around my head. And it is important for me to have a record of this time for when I am, hopefully, better one day. Memory changes experiences, and while this experience really sucks at times, I think there are things in it that are important and help me be a better person.

Today was not as promising as I hoped it would be. I woke up some time in the night, drenched in, you guessed it, sweat! That makes five time in the last seven nights. Five freaking times in one week.  I couldn't be bothered to change after I woke up... no more groping in the dark for clean, dry pajamas while try to be as quiet as I can be on an incredibly squeaky wooden floor in order to not wake up my roommates and the people who live upstairs. The quieter I try to be, the more noise I seem to make. The last few nights I have felt like an elephant stomping on a pallet of eggs! Last night I simply stripped and rolled over. Unlike my room in St.Catharines that has a twin sized bed, the one in the room I am subletting has a queen. So, like any person who has woken up because of night sweats one too many times, I simply rolled over to a dry sectioned of bed sheets and went back to bed. Normally I wouldn't do this - I would make the effort to find dry sheets and clothing - but after five time a week I none to thrilled when I wake up like that yet again, and to be frank, it is beyond exhausting and frustrating.

I woke up completely exhausted. Didn't feel like I slept a wink (I wonder where this expression comes from). I was really pale - looked like a sheet of paper; I could only get my eyes half open; and there was a killer headache for about an hour in the afternoon. The cold and chills are still sticking around as well. It is to bad that the fading winter didn't take those away with it. I don't know if everything I am feeling is the bone infection (leg didn't hurt at all today!), or the cumulative effect of almost fourteen weeks of antibiotics, or a combination of both, but I am so so so done with it. I need to feel ok, healthy, normal again, but that isn't going to happen... and even by some chance that I do feel really good in the next few months, it will all change when I go on antibiotics again before surgery later this year... By the time I stop the antibiotics next week, and take some time to rebound from how crappy I feel, I will only have maybe two months before I am put on them again, and that is only if the damn infection doesn't do anything. And of course, as I type this, I a get a horrible constricting feeling deep in my leg...

Despite all this, I forced myself to get a tone of school work done today! My focus for the day was the Developmental Psychology course I am in. Tomorrow I will finished the last bit for next weeks psych class, and then continue studying for next weeks patho/pharma/physiology test. I am actually feeling pretty confident about it already. If I had to write it right now, I think that I would pass.

I went on my usual walk around campus tonight. I try to stay out for at  least an hour. Yesterday was an hour and a half. I saw the deer again and enjoyed my stolen moments. There were two grazing among a bunch of bushes and trees by a parking lot almost at the sports stadium. I wanted to get a picture, but it was to dark/my phone camera to shoddy, and then I thought "enough with technology and pictures", so I stood there for a quarter hour just being, and taking in the moment. As I was leaving I saw a third dear far away near one of the emergency button/phone stations on campus, exploring the var unnatural blue lights that turns on when someone (or something!) approaches it. It was quite dark down there, not really safe enough to go alone at night, so I left it as is. I am actually not sure if I am allowed to be on campus that late at night, since I don't live in a dorm (I am subletting across the street from campus/the hospital). I haven't been approached my security or anything, but that might namely be because I haven't seen them yet. I hope it is alright, and I will continue to do it unless I am told I can't. It is so peaceful, almost as if you are the only person on the entire campus. Everything feels... I don't know how to describe it. I think a lot when I walk, especially about surgery/bone infection. It's not a feeling that everything will turn out alright  in the end, but it is a feeling that things will be ok no matter what happens. I don't think I described that very well... not sure if I can.

Back to school

Classes started today. I am now officially no longer one of those clueless first semester nursing students, incredibly proud to have a uniform and nursing paraphernalia like blood pressure cuff, stethoscope, pocket thingy to keep my many pens and pencils organized in the numerous over sized pockets of my scrub pants and one of those cool little pen lights you always see doctors shining in peoples eyes on Grey's Anatomy, yet utterly lacking in nursing knowledge. I now have some actual skills and have been deemed proficient enough, along with my classmates, to move onto second semester (and to start placement in a hospital... with actual sick people - a big improvement from working with dummies in the mock hospital ward - next week)! As one of my friends in the program and I have joked, we are no longer baby nurses. We are now toddlers allowed to roam free on the inpatient wards. Just kidding - I am sure the staff we work with will keep a tight rein on us.

It was wonderful to see all of my classmate after our two week hiatus, but it was difficult to tell people about my leg and the appointments I had over the break. I only told two people. While they are supportive, and I am really appreciative of that, they don't understand the situation or grasp what it means for me. I can't blame them for that - they have not gone through chronic illness and relapse. But I still feel alone, and at the end of the day being surrounded by friends does not completely take away from that. I think it is time to talk to the school counselor. The irony of being ill while learning to care for ill people is not lost on me. On the one hand, my experiences will help me become a better nurse, but on the other, I need to make sure to take care of me first.

I did call my infectious disease specialist today, and left a message informing her of what is going on. Hopefully I hear back from her office this week. Regardless of what she says, though, I am going to focus on my school work. I am very excited about this semester, and don't want the bone infection to steal more from me than it already has.

It is time for bed now. I have been sleeping horribly since mid last week, and while my leg hasn't been hurting badly, it has been feeling quite uncomfortable. Hope for sunshine and feeling better rested tomorrow.

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.

Day Twelve

I had an appointment with my orthopedic surgeon today. The appointment. The one I have been waiting for, expecting to schedule surgery. Infectious disease gave me the all clear. I had talked it over with my mum, gave it though and consideration over many weeks, made my decision, came to terms with it, and was ready. But surgery has not been scheduled. I was angry. I was grumpy. I cried in the car. I am deflated. I am sad. I am too young for this. I have been through too much. And I don't want to type it all out tonight, so I won't. Perhaps tomorrow.

On a different note, I found out when and where my clinical placement will be this upcoming semester. I am very pleased with the hospital I will be working at, and the week day is amazing (Thursdays!) so I will come home to St. Catharines for 3 whole days (Thursday evening to Sunday evening).

On the way home mum and I went to Gage Park. There is a greenhouse there that we wanted to see (I have heard good things from a classmate who takes her children there). It was beautiful! Plants in the shape of dolphins, a turtle, and an elephant. There were very large gold fish and two types of parrots. The park itself had many fir trees - smelled like a lovely fresh damp forest.

Back in St. Catharines we stopped at Book Outlet - got some books I was on the fence about yesterday. I got:

The Landmark Thucydides: A Comprhensive Guide to the Peloponesian War
and
Zeus: Grants Stupid Wished: A No-bullshit Guide to World Mythology

The second one is my bed time reading for tonight - a good hard laugh to ease the tension and disappointment of today's appointment.

My best friend, Beth, who I have known since the start of high school way back in 2006 came over tonight. We watch Fringe on Netflix and ate pizza and cheesecake. I am so incredibly fortunate to have a friend like her!

Mum is amazing helping me work through everything, being there at appointments and to support me. I couldn't do this without her. This morning she also helped me move some stuff to my new place in Hamilton (see likes room I am subletting). Only have clothing, textbooks, and food (and myself of course) left to move on Sunday evening. We also found a lovely bakery in Westdale that sells delicious fresh chocolate croissants. Tomorrow we go together to a rummage sale and Niagara-on-the-Lake. We will drive in the country, amongst the orchards and see the trees bloom, white and red flowers.

Appointment tomorrow

Tomorrow morning I see my orthopedic surgeon. Mum and I will be asking him to schedule surgery since we got the go ahead from my infectious disease specialist last week. We have some questions about less invasive surgical options, but I think our minds are set. We know which option we want. Any questions are simply there to solidify our decision.

I didn't sleep well last night. I have generally been going to bed earlier and waking up at 10 am every day, working on getting it back to 8 am for when school starts next week, but today, despite setting my alarm for 9 and my desire to get up, I slept until noon. I was just to tired to get out of bed. Even opening my eyes felt like a chore. When I did get up I had a headache - it waxed and wane on and off all day. I haven't had any night sweats in about a week, which is lovely, but today my nightshirt was a bit wet round the base of my neck and I felt way to hot. I also had horrible dreams, some of which were about surgery.

I did go to Book Outlet today. I have been meaning to do this since late last week. Going there seems to have become somewhat of  a "yay, I survived finals and passed all my courses" kind of tradition.
Mum drove me and I took the bus home (lucky I looked at the signs in the terminal - the platforms have changed again! Otherwise I would have ended up on the number 8 bus instead of the 2). Mum noted that I sounded tired today. I couldn't agree more. We talked a bit about the bone infection on the way to the store. I mentioned how calm and relaxed I feel; how wonderful these two weeks off have been and how I am feeling refreshed and looking forward to starting second semester on Monday. I then mentioned how unfazed I feel about tomorrow's appointment; how the entire bone infection isn't bothering me right now - taking each day at a time, it's just life, how it is. She asked me to explain what I meant. I hadn't thought much of my feeling until she asked me to explain them. Forced to verbalize the reasoning behind my feelings, it hit me - I said "We have been through this so many times before, being ill, waiting for appointments, scans, surgery, etc, it has become normal. There isn't any point to worrying about something that has become part of our lives and is now normal". This would seem like a really depressing statement (that being ill and all that entails is just part of every day life) but I don't look at it that way. I just see myself navigating through life, like everybody else has to, with slightly different obstacles than my peers. Our goals are still the same in the end. The paths we take are just different.

On a different note, I got some lovely books today that I look forward to reading. I am going to try two read twenty pages before I go to sleep each night. I miss reading for pleasure. Whatever I don't get through will be waiting on my nightstand for me when I have surgery in the fall.

The books I got today are:

"Viking Age Iceland" by Jesse Byock
"Bulfinch's Mythology" by Thomas Bulfinch (I might be a nursing student now, but the history/classics nerd within me is still alive and reading!)
"The Street Philosopher" by Matthew Plampin
and a book on yoga for beginners to help with relaxation and stress management. To be completely honest, through, I have kind of always wanted to try yoga, even before I became ill.

I also got some lovely new sticky notes with birds and flowers on them for the new semester - brighten up all my notes and binders. Oh, and on the way home I stopped at Fine & Grind Cafe. I got a chocolate chip oatmeal cookie. It was scrumptious.

Worldview - slowing down

Another lovely day has come to an end - the sun has set, the bird song outside has quieted, and I have donned my woolen socks to stave off the evening chill, reminding me that although the days are warmer it is still barely spring here (two weeks ago we still had snow!).

When I had the bone infection the last time, I was forced to slow down my life. I have always been one to enjoy the little things in life (I like to think it is all the little things together that make life so beautiful. We must therefore enjoy both everything all together and individually to fully appreciate our own little worlds, floating and bumping, merging for short periods, with those of others), but being ill shrunk my world to the point that the each little thing felt precious and important. I enjoyed that feeling immensely. I learned to take pleasure out of everything, no mature how minute. When I got better, I vowed to stay like that. In many ways I did - walking at dusk to hear the birds, see nature come to life while many others g inside for the night, listening to the rain, feeling my toes in wet dewy grass while walking in the park in the morning, savoring a cup of tea, But I have also been drawn back into the hubbub of daily life - rushing to catch a bus to school, working hard as a nursing student, dreaming of my future, feeling impatient and that I am should racing towards it full steam ahead. I try to balance indulging in all the little aspects of life around me and my life as an increasingly independent adult.

I hadn't realized how much busier my life had become until the relapse. In between all the scans and doctors appointments my life, I feel, has drastically slowed down again. Yes, I am still a nursing student and the next semester will being on Monday, but I am more calm and relaxed than at the start of the year. I think illness does that to you - makes you focus on the here and now rather than the future. Having surgery for a fall, which requires taking two semester (eight months) off adds to this. my big focus is making it to surgery - in regards to the rest of my life it is a short term goal, but it fills my life completely. Nothing is being planned beyond the end of the next semester/end August. The combination of being ill (which makes me reflect on life and what we are all doing in this crazy chaotic world), and waiting for something I dread (surgery and the inevitable accompanying pain) are what cause me to slow down. Being ill sucks, but slowing down feels fantastic... luxurious. I walked in the park for an over an hour today (with my wide brimmed hat of course. Darn it Doxycycline!). I made tea when I came home, toasted bread with fresh black forest ham. I sat on a bench and felt the cool breeze on my lower legs and bare feet. I forgot this feeling. Life is both so much simpler and more complex when you are ill.

Inevitably I will tell myself to hold onto these feelings and attitude towards life when I get better. As experience has taught me, however, I will eventually merge back into "normal life". It makes me wonder if the there are certain things, even feelings and attitudes, you can only have when you are ill. If so, I am not saying that I enjoy being ill, because I don't - it is horrible, and suck, and filled with pain and worry and uncertainty - but there are also good parts. We find ways to make things ok for ourselves, and that means getting some good experiences out of being ill as well. Part of that means slowing down and learning to create joy out of everything.

Eight feelings

I went through a variety of feelings when I was first diagnosed with chronic osteomyelitis - feelings the continued as I went through treatment and even after I was given the all clear by my doctors in 2013.  This feelings have returned with the relapse. Sometimes I think of them as water bursting through a dam, mixing all together, overflowing me with thoughts and concerns, confusing. Being ill has taught me how possible it is to feel numerous, and even conflicting things, simultaneously.

Here are eight of the most common feeling I have:

Anger - angry that I am ill, again. That I not only had to go undiagnosed for five years, but then had to go through treatment, had hope to get better, was granted that wish and moved on with my life, only for the whole damn thing to come back once more. I am angry at others who try to help but do not know how (this is not their fault - friends and family care for me and want to help, but I am sick of needing supports. I want to be better. The anger is not so much directed at them, but my situation itself. I am frustrated!). Angry with myself - I know I am not coping as well as I could be, but I am tired. I am angry at myself for being tired - physically and emotionally. Angry at my body - it has betrayed me.

Sadness - more often than anger, I am filled with sadness. It is deep, it makes me ache. I think about everything that I have lost because of this: a social life, physical activities, keeping up with my friends and classmates, dating, time itself. I miss everything I could have had instead, normal things. And sad that I have to go through it all again.

Hope - that beautiful unfailing things, that sole inhabitant of Pandora's jar, always fleeting in and out of sight. Despite the relapse and my fears that my doctors will not be able to make me better, I still have hope that it will all be okay. I talked about this earlier this month - my hope that each new set of scans will show that the infection is gone, even though I know it won't be, stubborn old thing.

Fear - fear that the infection won't go away, ever. Fear of uncertainty. Fear that the surgeries won't work or may cause a new infection themselves. Fear of pain and discomfort. Fear because there is something inside of me that should not be there.

Guilt - towards my family, for having to ask them for help and support - physically, emotionally, financially.

Trust - I have trust in my doctors that they can make this right. When I speak to other people, they reassure me that I have some of the best doctors that I could possible have. ER doctors, my family doctor, second opinion orthopedic surgeon, etc. all tell me this, and I believe them. Trust and fear go hand in hand.

Envy - or jealousy, if you will, of all of my friends and classmates who are healthy and have never gone through a medical diagnosis or crisis before. I don't want them to be ill instead of me, but I wish it was not me at the same time. I have been through more medically in the last years than some people go through in their entire lives. Why does it have to be me once more? Why can't someone else have a turn so that I can lead a normal life? Everything was going so perfectly, and now look! It feels like it all falls apart again.

Indifference - I hate this feeling, but it is fact becoming me friend. It costs to much time and energy to deal with all these emotions, doctors appointments, concerns for the future, etc. What ever happens will happen, regardless of my input or feelings.

I saw my family doctor today to get a prescription for Tamiflu. I am not sure if I need it or not next month when I start my clinical placement in a hospital because flu season is over. I figured I would get it anyways, just in case, while still in St. Catharines. It is easier to get it now through my family doctor when I have a week off than to realise I need it next week once classes have resumed and I am in a new city in which I will have to hunt down a walk in clinical and likely sit there for several hours.

Of topic now.

I saw my family doctor for the prescription. He asked me how things are going. I said "Mostly good, but the bone infection came back." Doctor replies "I know (he gets automatic updates from my other doctors). You medical chart is sad." We laughed at that, but it hurt a little. It is true. My medical chart, a big fat binder full, tells a long and winding story. The ending will hopefully change, but the current chapter feels kind of grim.

Remember

Memory is a funny thing. When people experience intense emotions, they think that they will remember that exact feeling or the moments associated with them for the rest of their lives. We may, for example, experience a sense of euphoria when we fall in love or meet that special someone; feel a deep sadness, anger, or despair when we are confronted with unfavorable medical news; have a sense of tremendous and inconsolable grief when a close relative or dear friend passes away. Over time, however, our memories of those emotions changes - the feelings fade, or we shape our memories of events to what we wish they had been/the most ideal form. A failed relationship may have us reconsidering if we actually really felt love for a person at all; time and acceptance masks the shock that accompanies a medical diagnosis - a new normal makes it hard to remember life prior to illness; the grieving process makes the loss of a friend or family member bearable and we slowly move on with our lives, giving the deceased a small role in our lives rather than making them the focal point.

With my recent relapse, I have been thrown back into a world of uncertainty and worry, which I talked about in my previous post (My nest). A friend recently asked me if going through the process of seeing doctors when my symptoms reappeared, going for scans and sitting on edge waiting for results, and now waiting for surgery, along with my physical symptoms, felt similar to how all these things felt the previous time. She wanted to know if it was easier to cope this time around since I have already done it all before. I desperately wanted to answer that yes, it is much easier the second time around because I had learned from my experience but the honest answer, however, is that it is not. I had forgotten, to an extent, how I felt the last time I went through this. Time had dulled my experience, made the details hazy, and altered my memory of my feelings and emotions. After all this time, I forgot how much my leg could hurt. Looking back, I remember feeling, more often than not, in control of my situation. Rereading several of my blog posts, however, I know that I felt helpless and unhappy (Blah Blah Blah... I am fed up). I recall being over the moon with joy when my infectious disease specialist declared that the bone infection was gone. Rereading journal notes, however, I notice how afraid I was for months on end that the infection would return - how it was only a year later that I became optimistic that the infection was truly gone. But even then, my thoughts would race back to infection at the first hint of pain in my leg. In many ways, this relapse feels new and different to me - it is like rediscovering something you vaguely remembers, like skimming through a textbook and reading the heading of a chapter, and then being expected to know everything that was written underneath it.

The thing that strikes me the most is how little patience I have anymore. The relapse has left me feeling antsy and unsure of myself, always in a rush, always wanting answers and a firm plan set in stone. I think that I have forgotten how I coped the last time around. Coupled with the uncertainty that relapse brings, I feel like I am treading in unknown waters. In the future, I want to remember how this feels, even if it feels horrible. I want to have a record so that I don't forget and time does not alter my memories. I am, therefore, going to attempt to write down (and post!) one thing that is new to me or sticks out to me about this illness for the next thirty days.

My nest

Chronic osteomyelitis has been a big part of my life over the last nine years, from to compound tib/fib fracture in early 2006, being dismissed by doctors over the years as worrying too much about pain and swelling, finally getting a diagnosis in summer 2011, surgery and the dreaded PICC line in 2012, receiving the all clear at the start of 2013, and the eventual relapse at the start of this year. Over the years, I have had numerous surgeries, tones of x rays and various scans, countless courses of antibiotics, flareups, and symptoms like bone pain,  night sweats, and endless chills/always feeling cold. These are the hard facts of osteomyelitis; these things can be looked up in any pathology book or easily found in a search engine like Google.

There is, however, a different side to living with a chronic illness - one that does not appear in the massive textbooks used in the nursing program I am. It is the side that people do not like to talk about - it is the worry, uncertainty, and fear that I, and many other people who are chronically ill, live with. These feeling do not go away even though I have been dealing with this infection for almost a decade. No matter how many scans I go for and days I have to wait in until follow-up appointments, I still worry about results. Despite taking antibiotics, I am afraid of the pain in my bones, afraid of hurting, afraid of pain, afraid of not being able to stop it, and when the pain does come, I am afraid what it means - is it healing pain or pain from the infection and bone dying? And no matter how much people reassure me that I will be o.k and get better, I am uncertain about the future - after all, the infection relapsed. I relapsed. I hate writing those words. Hate hate hate. Hate is a strong word. I do not like to use it. it is not dislike or indifference. It is to despise, loath, abhor. But I think that it is appropriate here. I hate the worry, fear, and uncertainty more than the infection itself. I could cope better if I new that this infection could go away forever with treatment. Instead, the best I can hope for is remission (there is now way of knowing if the infection is really gone or not. I can only hope, after treatment, that it is gone). That is what I did last time. Now the infection is back. I am tired. My brain is tired from dealing with this. Some days, I am so tired that I don't feel like I care about the infection anymore... just let it do what it wants too... this makes me very sad.

People do not like to talk about these things - medical problems, hospitals, taking pills, surgery, remission and relapse. Illness and doctors scare people; it reminds them of their own mortality. It is easier for them to ignore these topics. As a result, I have lost many friends. They did not understand my health problems; some thought I would get better if my attitude was positive enough; others would ask me how I was doing but clearly did not want to hear my answer; people were my friends when I was first diagnosed and had surgery, but I guess the novelty of my health problem wore off for them after a while.

I deal with the physical aspect of my illness - the doctors, scans, surgeries, etc.
I must live with the fear, uncertainty, and worry.
I have to cope with the emotions surrounding my illness and questions of "why has this happened again?"
and I am lonely.
As a result, I am tired and discouraged. Sometimes, I even feel like none of it matters anymore - that the infection will be here forever and that I should just give up and let the nasty in me win.

And thus we get to the main purpose of this post - being kind to your self and creating a loving and comfortable environment that will help support you through the hard times. This space is made up of many things, including the people you surround yourself with, the activities you do, like meditation and breathing exercises to help relieve stress, the food the gives you energy, the food and activities that comfort you when you receive bad news, that help you celebrate positive results, that get you through appointments, and the physical space you live in or call home. I am going to focus on the last of these right now.

My home is my haven - it is there through both the good and the bad moments. When it is stormy outside and I have a bad day, I can curl up in a blanket, cocooning myself from everything outside, lying in my cozy bed in the dim light listening to the rain thinking that it won't only wash away the grim outside but also my troubled feelings - it is cathartic. Early morning,  a weak sun shining through the leaves, slowly gaining strength, warms my skin as I sit by a window or outside on the porch, reading a book, sipping tea, just sitting quietly listening to the birds. It is invigorating, and healing - it make me feel strong and alive.

My home is my domain - in 2012, when I had a home care nurse visit me daily, my house was my space - I was in control, unlike when I am at the hospital. When I have my next surgery, I will likely have a home nurse for wound care again. When she visits, she will come into me world, where I create order and a welcoming cozy environment.

My home is a retreat from the medical world - no doctors, surgeons, operating rooms, MRI machines - inside my home everything is o.k. - stash of tea by the kettle, fruit on the table, flowers throughout the rooms - nothing to remind me that I am ill. Most of the time, when I return from a doctors appointment, the first thing I do when I get home it to make a cup of tea. It is one of the only things I know with certainty - not matter what happens, I can come home and have that cup of tea!

My bedroom - my bedroom is purely my space, and it is magically, with fairy lights, fluffy pillows, and tones of books. It is my nest! When I have surgery, it is the one space I will spend the majority of my time in, and I have therefore made it special to me. There is nothing like your own bed to sleep in =).

First thing I see when I enter my room. I got the fairy lights from value village for 2.99$
The blankets and pillows are greatly appreciated because of the coldness/chills I always have thanks to the bone infection. They where one of the first symptoms I had that confirmed to me that the infection was probably back. 
Lots of books on the shelves to keep me busy when I have surgery.

 The letter box came from Value Village as well (2.99$). It was originally brown (really ugly), so I painted it white. I made the heart garland myself using  instructions from a magazine (Romantic Homes). The picture frame contains embroidery I completed last fall. Embroidery is one thing that keeps my busy when I do not feel well/have surgery.

The cork board contains more embroidered items I made. A lot of stuffed animals - it's a comfort thing.

Origami butterfly mobile I made last year - it is across form my bedroom window. When the window is open, it dances and turns in the breeze!

Lots of little touches in my room, like the earrings hanging from the lamp shade. I like to keep flowers in the room - living things are inspiring.

I love the look of work wooden furniture - something comforting about it - if things can survive time, I can survive my bone infection too.