Infection free, but...

As ecstatic as I am that my bone infection is gone, I am slightly frustrated by how I feel today, making what I said in yesterday's post seem especially true - I will continue to feel crumby until the antibiotics are stopped in three months. Last night I had terrible stomach issues, and today I am exhausted. I don't know how to describe it... but it is that horrible exhaustion you feel all through your body and into your eyelids, as if they are trying to force themselves shout. I'm actually a bit nervous about how cruddy I feel. After a year of antibiotics I am afraid what my immune system is like, and am a bit skeptical about how well I will hold up once classes begin in seven weeks. I don't want to catch every bug and cold going around campus.

Speaking of school, I have decided to take only two courses first semester - Latin (because I am a nerd), and Astronomy (because I still need to fill my science context credit). This year will be a kind of catch up. It is almost convenient actually... both Latin and Astronomy have 3 lectures a week, compared to the usual one, so they make it hard to fit in other subjects on certain days, so I don't have to worry about any of that. So my schedule, once I am allowed to register on Tuesday should be 1-2pm Astronomy, 3-4pm Latin on Mondays, Wednesdays, and Fridays and one seminar fit in somewhere which means I have plenty of time to feel better and finish of last year. In the second semester I will add two half history credits, which fit well with the Astronomy/Latin schedule. Phew! What a relief.

I should have taken last semester easy, but I didn't, so I will have to do it now. Now if my stomach would just feel better...

Oh, just a last minute note. The picture on the left shows what I was taking before today, and the one on the right shows what I take now. Back to pre-surgery doses! The white pills are the Septra, and the orange are Cehpalexin.

And drum roll please....

It's gone! The scans were clean. No trace of inflammation or infection to be found! Yippee! As of today my doctor says I am bone infection free. I'm just like everybody else now... not sick, not waiting for surgery, not in constant pain, and not being stared at while on crutches/connected to an IV line. I am just another ordinary, healthy adult, and it feels fantastic! It was about time that this infection, which has been plaguing me for far too long, has been kicked out. Final eviction notice acted upon!

I will still be on antibiotics for three more months. Not really sure yet which ones as there are some shortages going on apparently. Staying on antibiotics is to make sure that any tough little cells that have evaded surgery, IV antibiotic, and then oral antibiotics don't have a chance to grow stronger and multiply. As much as continuing them sucks because I tend to get a lot of the side effects, it is worth it to be absolutely sure nothing will come back. But my infectious disease specialist said that I should assume that the infection will not come back, reassuring me that the vast majority of her bone infection patients never relapse after being told they are cured for the first time.  I see a surgeon next week Wednesday for  x rays to  make sure the bone is filling in nicely. Early September I see infectious disease again for a followup and then in October I have what will most likely be one last MRI just to make sure that everything really really really is gone, kind of like a safety net, and obviously a follow up for the MRI results.

But none of this matter! I am infection free. The rest is just routine protocol 'just in case'.

My mom and I wanted to celebrate. BTW my mom is awesome for all the things she has put up while my infection has being treated.

We stopped at my favorite second hand book store, and as usual, I couldn't walk away without buying anything (nerd, bibliophile, whatever, call me what you will. I am ok with it). Did you know that A. A. Milne, the author of Winnie the Pooh also wrote other novels? I found this out recently, and to my surprise found a copy of one of his murder mysteries at the book store. It will be interesting to compare his writing styles. And of course, I couldn't leave without a fiction novel that includes Hadrian's wall. It was extra nice to go to the bookstore because the owner, a very old lady, who had been away for months and months due to health issues was there today. =) It was really good to see her again.

 After the bookstore we went to the market and bought orchids. Below are the ones my mom gave me. She bought darker purple ones in  black pot.

And here you see me. Can you tell how exhausted I am? I will be very very thankful in three months once the antibiotics are stopped. I think I will still pretty icky and tired for most of first semester, but by the second semester I should be back to normal... whatever normal is, because honestly, I don't even remember. I look forwards to finding out how good I can actually feel. I was still a child, 13 years old, when I got sick, while dealing with a broken home and all the issues of living with a mentally ill father, and I will come out of it as a mature, 20 year old (well in 6 weeks anyways) adult in university preparing for her future. It just feels good. =)

On Tuesday, July 12, 2011 I was diagnosed with chronic osteomyelitis, and exactly one year later, today, Thursday, July 12, 2011 I am told my infection has been successfully treated and is gone. Hurray!

Tomorrow, tomorrow, I'll love...

 ... my leg tomorrow... depending on the results that is.

I get my scan results tomorrow morning when I see my infectious disease speacilsit. I would really like some good news... what I will do next e.g. in regards to school, really depends on those results. I have already decided that if the infection is gone I will only take two courses first semester so that I can also focus on finishing off the last academic year and getting better. Thankfully I will still be on schedule to graduate when I had planned too! (That's the wonderful thing about taking five years to complete a four year degree... time wise I can afford to be ill for some of it). If someone had told me a year ago that I would feel as sick as I do now, after 12 months of antibiotics, I would not have believed it. But wow. One year really makes a big difference in how you feel. I know that I felt terrible last year due to the infection, but I think I feel almost as terrible now due to the antibiotics.

I don't really know what to expect as I have started having bone pain again, all of twelve week after surgery.

I would cross my fingers for luck, but this really isn't down to luck at all. The results have been in for at least  week now, so the only difference between the present and this time tomorrow is my knowing those results. It's not like they will magically change between tonight and 9:30 tomorrow morning! There is nothing I can do to make them any different. As I recall posting when I started this blog - "It's not as if  I have a time turner like Hermione Granger and can magically jump forwards ten days." Just because I wait doesn't mean I want to. Rather I shall prepare my self for the worst, and jump for joy if it is anything better.

Oh, to be bone infection free would be a beautiful thing...

 Who said being chronically ill couldn't be fun? continued

11) Being chronically ill is definitively a good excuse to buy piles and piles of fluffy pillows and funky pillow cases (many from the appointments at IKEA with the detours to the doctor)! Oh, and don't forget blankets! When ill, tired, cranky, in pain, etc. there is nothing better than having a big squashy comfort item to curl up with. Speaking of comfort items, throw in the money to procure some big mugs for tea and soup as well.

12) When it comes to buying things, don't forget scarves and jewelry. I might look like crap half the time, but at least I can distract people with my new accessories. Cause, you know, every girl wants to look sexy and hip, right?

13) Wearing all the fabulous accessories only the chronically/severely ill can wear. I know some people who were terribly jealous of my PICC line covers. As glad as I am to be rid of the PICC line I do miss the bright colours and nifty patterns.

14) Driving the scenic route on the way home from the hospital, making it possible to go to all the lovely shops you like along the way! That one place has such good scones... =D

15) Seeing how many hours you can sleep at a time. Looking back I find this fairly amusing, but it was actually pretty scary at the time. I remember there were times last year I would sleep for 16 hours straight, wake up to eat and 3 or 4 hours later go back to bed for another 16 hours. It really messes with your head, although you do get some pretty amusing dreams!

16) Counting the ceiling tiles while having an MRI or WBC scan. Add counting the tiles while sitting in a waiting room as well. It really helps when you have to wait for several hours or there is a humongous line ahead of you for blood work, or when the blood work nurses are just really really slow...

17) The odd sense of pride I get when I know more about osteomyelitis then some of the specialists. And surprising those specialists when they bring up big words and terminology and then I tell them exactly what that word means before they can explain it.

18) Having awesome come backs to the snide comments of other people when they say things like "But you look so well," or "Oh, you must be better to be out and about."

19) Simply smiling politely and staring back when I catch people gawking at my leg. Nothing makes a person more self conscious then knowing that you see them staring at you.

20) And last but not least, being able to joke about what is wrong with you. You know the song that goes "there's a hole at the bottom of the sea"? Well, I have my own version.

There's a whole in the middle of my leg,
there's a whole in the middle of my leg,
Oh there's a hole, there's a hole,
there's a hole filled with pus in the middle of my leg."

Morbid, I know. But I find joking the best remedy when I am nervous and afraid for what happens next.

And there is the second half of my list. Morbid and warped I know, but it's the truth. Being chronically ill isn't all depressing you know.

 Who said being chronically ill couldn't be fun?

Here is the start of my "warped sense of fun for the chronically ill' list. Half way in one go isn't bad. I should go sleep though... if I dare. There is a jumping spider roaming around somewhere in my room... just waiting, waiting I imagine to crawl on to me once I fall asleep...

1) Seeing how many vials of blood are taken at once and then observing how big the bruises from having blood work done become. Always the worst when the nurse jabs the needle in or wriggles it around in your arm.

2) All the fun things you get to do around hospital appointments, scans, etc. It's not a doctor's appointment with a diversion to IKEA. No way! It's definitely an appointment to IKEA with a detour to the doctor.

3) Being able to observe the often comical and sometimes idiotic thinking and behavior of med students! Some residence should be banned from ever becoming doctors. I hate to think what the bedside manner of some of them is. I mean, there was one from somewhere in the middle east working with my old surgeon. He wouldn't even look at me, let alone shake my hand! I think it had something to do with my being a woman...

4) Having contests with your friends to name things like your PICC line. For example, we concluded that my chronic osteomyelitis should definitely be called Boris cause, you know, Boris is so boring. Get it?

5) While in the hospital, listening to the drug induced ravings of other patients. e.g., "Help! Help! I'm being trapped under a computer!"

6) Scaring all the nurses with your seriously low blood pressure after surgery. I know, I know, that really isn't funny at all, but since they got to see me use a bedpan ( several times may I add? TMI?) I had to get back at them somehow.

7) Being able to choose which movie you want to watch during your MRI, and then, when you only get half way through, watching the second half during your next MRI. (I look forward to the end of Sherlock Holmes BTW).

8) Creeping people out with your scars or healing incisions. My god though. They just get a glimpse of it. I actually have to live with it. The expressions are priceless (evil grin inserted here).

9) Wondering where that mysterious bruise on your inner thigh came from. You know, the one you didn't have going into surgery several hours earlier...

10) Exploring the joys of showering when neither your right arm nor your right leg can get wet. Duct tape and garbage bags are your friends! That's right, duct tape is not loner only the handyman's best tool. It is that of those with chronic bone infections as well! Red Green would be so proud =P

A warped sense of fun.

Let's face it, being sick all the time isn't fun for anyone. Sure, you get the odd perks, like being able to sleep in without nosy parent berating you for sleeping the day away, or not having to do as many chores as your siblings. And you can often get more time to hand in assignments and write exams, resulting with jealous and, may I add, healthy students claiming  'it just isn't fair'. But really, those few perks are far between all the nasty treatments and periods of feeling yucky, and not worth the cost of being ill at all. Personally, I would rather have written my final exams with my fellow students back in April and had the rest of the summer to myself, but instead I had surgery and am now stuck playing the catch-up game. It would be great fun to go to the beach with my friends, but my medication makes me burn badly very quickly. It's a no brainier for me to stay inside. For me, being chroniclly ill sucks, but hey, I will let all the healthy people decide for themselves. Write exams and hang out with your friends all summer, or write your exams later but stay inside, alone for four months. I would be really interested to hear their choices and reasoning.

I think that anyone reading this will agree that chronic illness sucks, but I also think that those of us living with chronic illness(es) have our own, almost warped sense of humor and fun. Remembering that we are still people with lives beyond our illness(es) can be difficult when we are in pain, are frustrated with the medical system, curse are bodies for not doing what are minds want, or are just plain old fed up with everything. I have been having a lot of these 'I've had it!" moments recently. Things have really been piling up - the cumulative effects of all the antibiotics, pain and small sores on my shin, waiting... always waiting for tests and results, all my school work I am behind on, and now the impending divorce of my parents.

So what I'm going to do it make a list. A list of all the things that make me smile and laugh and forget the terribleness of being ill. I am going to start recording the things about being ill that, although shitty, make me smile. As warped as it sounds, I want to record the 'fun' parts about being ill. My goal will be to get to twenty.

All the lovely things...

Now for the pictures of all the lovely things that I needed to take care of my now deceased PICC line.

This is me in the mask I wore for every dressing change. My nurse had to wear one too.

These are the masks before being warn, all flat and what not. The box said that different colours are available, but my box only had green...

 

       The sterile towel that everything needed for a dressing change would be placed on. This thing was huge!

The sterile towel itself, only partially unfolded.

Below is the Statlock used to secure the PICC line to me arm. The nurse always had a lot of trouble getting it of, and more than once pulled off a bit of skin. on the left is the Statlock in its sterile package. On the right it is unwrapped, and the little package was the skin prep which, I think, was meant to make it less sticky and to protect the skin.

This is the Chloraprep used to clean my arm every week. At first I had ones with red curves on the packaging. They contained alcohol which stung badly, so we switch to these with the back curve - non-alcoholic.

Above are picture of the tegaderm dressing that would cover the PICC line at all times. It wasn't allowed to get wet at all... kinda hard when it is really hot and you start to sweat. The white strip around the whole thing comes off after it is out on your arm, and the strips at the side came off to secure the actual tubing to your arm.

Below is the tubing, which was changed every three days. At one point they accidentally ordered me the wrong size tubing. The nurse thought it would be o.k. but I woke up at 6:50 am to the alarm of the IV pump. Because the tubing was bigger and took more to prime (meaning getting a vacuum/all the air out of it before connecting it the the PICC line, and technically me) the 500ml bag of antibiotics I got everyday wouldn't last the 24 hours it needed to. Thankfully the nurse had extra smaller tubing in he car, and by the next tubing change day I had been given the right stuff.

It was very long, which was great when I was sitting on my bed and wanted to hope over to the bookcase in my room, but when I went out it had a life of it's own. It would sneak out of the bag and I would find it randomly trailing on the ground behind me. I gave up after a while and just held onto the excess, playing with it.

The connecter piece which connected my PICC  to the tubing. This often got stuck and we had to use pliers to get it off occasionally...

Gauze padding, used to wrap around the connecter piece/end of my PICC so that they would be more comfortable against my skin, and less affected by the tape holding the tube to my arm.

Alcohol swabs used to clean the connecter piece every time I got a new IV bag (aka every morning, and in between the saline flushes. Basically, disconnect tubing and swab, flush first saline syringe and swab, flush second saline syringe and swab, reconnect tubing, and swab).

Saline syringes to flush the line. This was supposed to be done everyday, but one nurse refused. We eventually just started doing it ourselves along with everything except the dressing changes. BTW my lovely mom did everything for me! It is kind of hard to do for yourself.  I had to laugh so hard when I saw that the plastic wrap around each syringe had instruction in Dutch as well as English and several other languages, since I am from the Netherlands.

Alost everything needed for one tubing change and one dressing change. There should be a few more saline syringes, sterile gloves, and regular gloves. I think that's about it. Oh wait, the actual medication itself. And my badger of course! To bad I am not a Hufflepuff.

I should note, that the actual items shown here were not used. I photographed all this after my PICC line was taken out. If I actually still needed all this stuff I would only have taken pictures of unopened packages.

Peripherally Inserted Central Catheters

Thankfully my PICC line was taken out about two weeks ago, and I will hopefully never have to go through the experience that came with it again. However, I still have several large boxes of supplies left in my kitchen. I can't really do anything with them as I don't need them anymore. Yay! But I still wanted to blog about PICC lines for anyone reading this who is at the start of this journey. So here I go. 

I am not so great at explaining what a PICC line is, so I will link you below to the Wikipedia PICC line page:  http://en.wikipedia.org/wiki/Peripherally_inserted_central_catheter
But I can tell you about my experience here, and I can show all the 'lovely' things needed to take care of it in the following post.

These are picture os my PICC line shortly after I got home from the hospital. As you can tell, it bleed. It continued to bleed for several weeks, which is completly normal, as well as oozing some odd looking gunky stuff.

I got my PICC line while in my hospital bed in the orthopedic ward the day after surgery. That's right, you don't even have to get out of bed or migrate to another part of the hospital is you were inpatient like me. Two specially trained nurses came in (right at lunch time may I add) and created what they called a sterile field. Basically, they put on protective sterile gowns, masks, gloves, hairnets, shoe covers, etc, and covered all of me except my head and my right arm in sterile blankets. The sterilness of the procedure even extended to the man bringing lunch - he wasn't, as the nurse said, allowed to contaminate her sterile field, so he has to squeeze through the door and walk on the other side of the room to give the other patients their lunches... don't know how that was sterile, but what ever floated their boat. everything needed was laid out on the bed side table, and one of the nurses estimated how long the PICC line needed to be (BTW, their estimate was right one!). The nurses used an ultrasound machine to find a good vein in my upper right arm - in my case the basilic vein, and then, while keeping the ultrasound in place, made a very small incision and placed a guide wire into the vein. Then my arm was numbed with lidocaine. Usually your skin is numbed first. I don't know why mine wasn't. A nurse inserted the actual PICC line and began threading it (to me. I know, that sounds gruesome). When they expect it is getting up to your neck they ask you if you hear anything funny. if you do the line went the wrong way, up your neck. At this stage they can still fix this. Mine did not, and moments later all 36cm of it were inside of me. The dressing was put on, and it was good to go as soon as an x ray was taken to make sure the tip of the line was in the right place. BTW, the x ray was taken with a portable machine - I got to stay in bed again. What awesome service is this!

The PICC line was very strange at first. It took a while to stop hurting, but After a few weeks I was even able to sleep on my right side. the only really difficult part was keeping the IV tubing and the bag of my IV pump from tangling with my crutches. Dressing changes were a bag of surprises. The first few went terribly with me almost fainting, although that could have been due to how the Tazocin made me feel, but the last few went well. The feeling when the tegaderm dressing comes off is amazing, and you almost beg the nurse to keep swabbing your arm with the chlora-prep swabs. Showering was also difficult, especially for me with both my right arm and leg not being allowed to get wet. My mom was amazing and washed my hair for me as often as my little heart desired.

My biggest problem with the PICC was actually the IV pump because I got several batteries which would not hold a charge, so for a while it was always a hit and a miss going out, and worrying about the pump shutting off on its own. I also had trouble with the chlora-prep in the last weeks or so, and I constantly had trouble with the PICC dressings and statlocks peeling off skin. Although the PICC line has been out for 16 days, the skin which was covered by the tegaderm dressing, etc. is still really sensitive and the actul place the line went into my arm is still healing.

Oh, and in case anyone want to know, I had a power-injectable PICC, and a CADD Solis Pump, which my nurses told me was worth 15 000$.

Moody

I'm not in a good mood. It's a crumby kind of day and everything feels kind of off. You know those days, when nothing you do makes you comfortable, when you can't sit down to concentrate on anything for more then five minutes. My father is here today 'cause he wants to fix the house up a bit now that the divorce proceedings between him and my mom are imminent, so until he leaves I have locked myself in my room with a mountain of school work and my guinea pigs.

Have a mentioned before how terribly far behind I am on all my school work? I was so exhausted in December that I missed all my exams. I had to write them, plus a few essays at the start of the second semester in January, which pushed me really far behind on all my readings and assignments for second semester. By the time I had finished the first semester work it was February and we (my doctors and I) got to the point where we knew surgery could not be avoided. I did my best to hand in some assignments but didn't get nearly enough done. By the end of  March I gave up, exhausted and ever more anxious for the looming surgery. After surgery the 8 weeks of IV antibiotics hit me like a stem roller and I was completely flattened. Only now, two weeks after the IV antibiotics were stopped, have I turned my mind to anything school related (well, except for Latin, which I have been reviewing every few days. Yay! for being a Latin nerd). Now I have four exams and four 8-10 pages essays to write. In order to do anything I first have to get caught up on all the readings, which, may I add, is a shit load of reading. Sigh. I need to email the registers office to sort something out. There is an option were they would give me until December to finish all last semesters work. I am considering this as my best option, and would then only take three new courses next semester. For the foreseeable future I will be on a tone of oral antibiotics and they make me exhausted. I want to take an easy year to get back to normal. Besides, we don't even know yet if my bone infection is gone or not.

Once more I am waiting for scan results, which doesn't  help anything either. I could see the screen with the pictures taken by the gamma camera while the scan was going. Lying there I tried to figure out what the pictures meant, but the effort just made my brain hurt as it ambled through all the possibilities. I will leave reading the images to the professionals and wait until July 12 for my next appointment to find out the results.

As I mentioned earlier, I am exhausted. I have headaches from the antibiotics every day - apparently Cephalexin is notorious for making people feel like death... go figure how I feel after a year. Plus I am on more of it then ever before. My leg hurts. I have had some bone pain which I like to think (and hope) comes from bone healing. Part of my shin is still numb from surgery. The area around it tingles a lot which is really irritating. this strange sensation feels like mildly warm water running over you skin, but kind of from the inside out. This is something I might feel for the rest of my life.  And one spot on the incision continues to leak fluid. Yesterday what looked like puss came out of it. And just in case you don't think it is TMI, my stomach hates me. I wake up everyday around 5:00am and feel like my stomach is trying to eat itself, and then I get terrible cramps but nothing happens. Really unpleasant.

A Very Radio Active Me (well, on Thursday anyways)

Almost two weeks ago I had an appointment with my infectious disease specialist. The really exciting news of the day was that my PICC line came out, which I had not been expecting at all (I'm not complaining though!). Some of the more routine news was that my doctor was going to schedule my next set of scans. We all agreed that it is to soon after surgery for an MRI or CT scan since the bone needs time to fill itself in, so we decided on a Bone Scan instead. A bone scan is a really cool thing. Basically, you are injected with radio active material (no, not enough to give you super powers), and put through a scan, and then asked to come back several hours later for a repeat scan, and in my case the next day as well, to see if there are clusters of the radio active material around the area (e.g. the limb) in question. The radio active material clusters around infections, so on a computer screen, attached to the scan thingy, you can see all the white dots (radio active stuff) moving throughout you. The really cool part (at least in my opinion) is that the radio active material is absorbed in your bones (hence the name 'bone scan'), and will pinpoint if/where something is going on.

The doctors at the hospital schedule all of the appointments for their patients, so the whole thing is 99% fool proof. No way a patient has to worry about booking thing or remembering to call that number, etc. You are supposed to get a letter with the date, location, and time, with any instruction about your procedure/appointment/scan/etc. from the hospital through the mail. However, that doesn't always work. Last summer I missed my first appointment with a new orthopedic surgeon because 1) either the hospital never sent the letter (they didn't call either) or 2) said letter got lost during the postal strike (just like my new bank card). Then in October (I think) my surgeon wanted to order a ultrasound guided needle aspiration to see if he could culture the fluid collecting in my shin. We heard nothing about this until several weeks after my latest surgery (April 18th), almost 6 months after I had last seen that surgeon. My mom polity told the lady calling from the hospital that we would not be at the hospital (2 days later) for the procedure as I was seeing a different surgeon and had already had surgery. The scary part is that for that procedure you have to stop certain medication at least a week prior to the day of. I wasn't on any of those medications, but I have a friend who is. It is frustrating (and I think negligent) that you can be called out of the blue and told that you have a medical procedure in 48 hours that you knew nothing about. So back to my bone scan. I never received the letter telling me when the appointment was scheduled for. Just yesterday my mom and I commented to one another that we should call my ID specialist. Low and behold, today we get a call from the hospital. The lady on the phone says that my bone scan, scheduled for nest week Thursday and Friday has to be rescheduled, until, drum roll please, this Thursday and Friday! once again, my mom told the lady politely that we had received no letter at all. If the hospital had not called, we would never have known about the missed bone scan until the next visit with ID on July 12. No don't get me wrong anything. I am extremely pleased with the care I have been getting, but something has to change with this "we will send you a letter" thing. How long will it be before I, or any other patient, actually misses an important appointment/procedure/scan/etc. because letters were accidentally not mailed out. I understand that mistakes happen, but this should be kept at a minimal. Sick people are stressed and feeling icky as is.

Bone pain.

Bone pain tonight. Hoping it is just the bone regrowing in the places it was taken out during surgery. Slightly doubtful as surgery was almost ten weeks ago, but I won't know until the next set of scans.

Just thought you all should know...

that in an unforeseen turn of events, my PICC line was pulled out today at my appointment with infectious disease! NO more IVs and dressing changes for me! And a good thing too... on Tuesday I had an allergic reaction to the chloraprep and today it looked like the start of infection. 8 weeks was long enough. I'm still on a bunch of oral antibiotics, but that I can live with.

I still feel terrible, but I hope that I will start to feel better now that I am not longer on the IV Tazocin!

Tazo-Don't

Now that I have vented a bit I should update a little. My leg is doing well. A good amount of the swelling has gone away. There is still some but not as bad as it was (thankfully because being able to feel my skin slowly stretch is a truly disgusting experience). There is still enough that I will discuss it with my infectious disease specialist at my next appointment. There is some concern that after so much damage/many surgeries there is circulation damage. The spots that had opened up a few weeks ago at the peek of swelling are healing. For a while they were leaking tea coloured fluid which is concerning, exp. given that I have also been experiencing some of my pre surgery pain. A good chunk of my right shin has not regained feeling. This was expected as this was the third incision made in the same spot. Also, given that, in order close the incision, the old scar had to be cut away, the skin is fairly tight and my shin is really bumpy. I hope that this gets better as I move farther and farther from surgery. The muscles are still extremely tight. I think that I almost have full range of motion in my ankle, but I can feel the muscles moving/flexing over my shin. Going down stairs is still pretty uncomfortable.This is probably because while in surgery the muscles had to be moved out of the way. Amazing that eight weeks later I am still feeling the side effects of that.

The antibiotics have not been going very well. I have had at least one headache everyday for the last week, often more. The IV Tazocin makes me very dizzy and nauseous. I often just end up laying in bed for a hours at a time. It seems to be the worst at night, esp. because I have been experiencing really bad insomnia. Because I am often so nauseous I haven't been eating a lot. Between last night 11pm and today 7pm today (that's 20hours) I ate about 6 small chocolate flavored cracker things and that was it. There was no inclination to eat. None at all. Just past 7pm I did eat a small bite of lasagna and a small bowl of chips, but I am really not interested in food. Take last night for example, my brother brought me a bowl of Ringos, but just the smell of them made me want to vomit. I have pretty much have zero stamina. Everything is such an effort these days. I don't want to sound dramatic, but I feel even worse than I did last spring right before I was diagnosed, which is really saying something because last spring I was a zombie. The antibiotics have some sort of cumulative effect. The longer you take them, esp. without missing a dose, the better they are supposed to work. However, the antibiotics can "just stop working" after a while. I have been on the oral Septra since last August so who know at this point. I won't have any answers until my next scans are done. My stomach has been on the fritz again, but I know that telling you this is making people scream "TMI! TMI," so I won't go further into that.

FYI -Tazocin is a strong antibiotics used for serious infections. It also has some really serious side effects. The chances of getting one of those serious side effects increases the longer you are on it. From what I have been told, most people take Tazocin for 2-3 weeks. I am at 8 weeks and feel like crap, so I am at the point where I want off this drug. I also just learned that one of the main ingredients Piperacillin decreases the effectiveness of Doxycycline, the oral antibiotic I was on right after surgery, so I am very happy to be back on the Septra. As for the Tazocin, I want off that ****.

Blah Blah Blah... I am fed up.

I have been feeling very blah the last few days. I think I have finally hit my "wall". You know, that point where you just don't want to continue anymore, and even if you manage to continue it's only because others drag you through it. Of course I am being dramatic, typical of me when I am in a bitchy mood, but I have a right to have had enough. I have a right to say no more. It is so easy for everyone to encourage me and tell me how well I am doing, but that gets old fast. I don't want to be strong. I don't want to smile through the rough patches while I wait for better days. I definitely do not want to push myself so that I feel accomplished, because doing so will take up all of my energy. I want to do what people are supposed to do when they are sick. To sleep a ridiculously insane amount, to not feel the need to look good in public, to not have to set priorities and please people. If I can lounge around the house I will be perfectly content. Basically, I want to be sick.

Wait.

Don't get me wrong. I know what you are thinking but it is not what I mean. I do not actually want to be sick. Nobody does. But since I am and have been for such a very long time, I want to be able to be sick without feeling guilty for all the things in my life that I am missing. I already feel shitty because I am ill, why should I guilty for being ill, feel even worse because I can't meet people's expectations? Why do people find the concept of being ill so hard to understand? If you are healthy you are well and able to everything as usual - no big deal, but if you are sick people expect you to be strong and still do the things healthy people do. In first year sociology, way back when in Fall 2010 I learned about the "sick role". I don't want to be the person to fulfill that role, to be that member of society, but I don't want to act as if I am healthy either. I want to be free to have my good days when I feel up to getting out of the house, and then have my down days where I can crash at home without worrying what other people think.

Today, at clinic for my PICC dressing change, all I wanted to do was stop. Just to stop treatment and say F*uck this, I will take my chances with the osteomyelitis. Everything started o.k. The nurse (Victoria) got the old dressing off and everything ready, sterile field an all. We donned our masks and we began. Usually the chloraprep swabs create a wonderful sensation as they rub the skin that is trapped under the tegaderm dressing (aka the I can't get to it if it itches barrier). This was much needed since the insertion site has been oozing gunk (perfectly normal) the whole week. Most usually comes off with the dressing, but today some chunky stuff needed a little bit of extra prodding. The chloraprep felt great for a few minutes. I even told the nurse that, and that I could sit there all day with her swabbing my arm. But it soon began to itch, and then then itch began to hurt just a smidgin, and then that slightly hurting itch became a painful OMFG this is an insane kind off torturish itch. And I couldn't do anything. Nothing at all. We were still waiting for the chloraprep to dry before finishing so the nurse started to flush the line. Every week we need to check for blood return. Last week we got none. We didn't get any today either. The nurse sat there, trying her best but it just made everything hurt more. But the nurse had to keep trying because they need blood return. We couldn't use the Heparin available because it can cause problems with the Tazocin. The Heparin prevents blood clots and the Tazocin can make bleeding hard to stop so you can imagine the emergency if they interact with one another.  After a few minutes Victoria gave up (rule of thumb for PICC lines = if it hurts, stop.).  I was left sitting there, almost in tears, begging Victoria to pull the line out. I was completely ready to be done with IVs, to take my chances with the osteomylitis if I still have it. But of course Victoria (wonderful and funny as she is) can't pull the line as she obviously needs a doctor's permission to do that. So we returned our attention to my every increasing itch. She tried using Iodine swabs, which worked for all of five second, and then the itch got even worse. I know have a Mepilex dressing over my PICC line. It's not great because it's not see through, but we couldn't take the risk of me being allergic to the tegaderm. Victoria said if the itching stay the same or gets worse to come back the next day. After a few hours it did finally die down, but the itch is still there.

And I just want this all to be over. I think I need to have a good long discussion with my infectious disease specialist when I see her next.

Achy Bones

Last night I experienced some pretty intense bone pain. Bone pain has been a constant companion for the last few years as my bone infection went untreated (more like undiagnosed...). Several years ago my family doctor waved it off as "growing pains", which is ridicules because I haven't grown since 8th grade. It was really severe by the time my latest surgery rolled around in April. Since surgery I hadn't felt any at all until about a week ago, when I had a few small twinges here and there early this week. I shrugged it off, thinking I might have imagined it since the pain lasted only minutes, but last night it was terrible. The pain started around 1:00am, and was still going strong when I finally fell asleep around 4:00am. It is the type of pain that make you lie in bed, unable to move, clenching your teeth. It's pretty insane that the bone pain in my right lower leg can make my whole body feel so badly. I hoped that I would never experience it again, but alas... I hope it is not a sign.

I shall add it to the list of things I need to talk to my ID specialist at my appointment next week.

Feeling ill (again or still?)

I do not feel well today. My stomach is going crazy. I feel feint. My head hurts on and off. Never extremely painfully but it never really leaves either. And on top of all that I am nauseous.

The tape which secures the end of my PICC line to my arm so that the end doesn't flop around and get caught on things had such strong adhesive that it pulled of skin. The PICC line itself has been causing me a great deal of irritation. It started to itch extremely badly after the dressing change yesterday morning. Last night it was difficult to sleep because the insertion site hurt/stung like crazy, and this morning it was bright red. Oh, and there is something that looks a lot like pus coming out of it.

To add to everything, my leg hurts. I wish I knew for sure if the infection is gone. My next scans should be in a 3 or 4 weeks. Infectious disease will schedule them at my next appointment on June 14th. Together, not knowing and waiting are difficult.

I am not a happy camper today. One my friends wants to plan a camping trip for the end of summer, so sometime in August. A bunch of us did this after high school graduation a few years ago and it was a huge success. He said he hopes I can come, but I doubt it. If all goes well my line will be pulled July 17th. Two weeks after that I see my surgeon for followup, and then probably mid August I will have another appointment with infectious disease. I will need to stay out of the sun for a while too, as I will probably stay on the oral Septra longer, which makes it extremely easy to burn. The whole summer feels like a write off. No fun for me. It sucks watching your friends move on with their lives while you can't do nearly half the stuff they do. I am jealous. I want to be healthy like them.

Well , the no fun part is not completely true. I will find other fun things to do. It just sucks that things are limited due to the bone infection. And my not feeling well today doesn't help my attitude either. My apologies if this was a stupid useless post to read, but I really needed to rant.

Clinic and feeling crumby

Today has been a slow day. I had to go to clinic this morning (this is something new that I should update about - please give me a sharp nudge if I forget) to get the PICC dressing changed, and to show my proficiency at doing tubing changes, which have to be done every three days. Mom and I passed the test so we got the go ahead to do it at home without a nurse. This is great because it means we only have to go to clinic once a week to get the dressing change done. Today's appointment was pretty early (at least for me) being at 8:50am. The tubing has to be done just before the IV bag is changed every morning, which has to be done before either 1) the IV pump indicates that the bag is empty or 2) 11:00am when the pump starts infusing. Basically, which ever happens first. Because we didn't have the go ahead to do this on our own yet, we had to go to clinic before 10:00am, and just get the PICC dressing done at the same time. But now that we can do the tubing ourselves, we can go to the clinic anytime we like one Tuesdays, even if the tubing happens to need changing that day. For the next five weeks we scheduled an appointment for each Tuesday at 2:00pm.

Compared with the nurse I had last week (my first time at clinic), today's was amazing. From the experiences I have had, the younger nurses are much friendlier and relate-able. The older ones seem to have this matriarchal attitude, and they hate it when people question them or have questions/concerns about anything. But the younger ones I have had have been all around super awesome fantastic.

I have been having terrible headaches and been feeling feint for the last few days. I told today's nurse about this when she asked me how I have been doing. She checked a giant package with all the side effects for all the different IV medications and said I was defiantly having side effects of the Tazocin. She said if they continue or get worse to call the clinic or my infectious disease specialist. Tazocin is not user friendly stuff. There also doesn't seem to be much that can be used in its place, so we are thinking I might just have to tough is out for 5 1/2 more weeks. This sucks. The headaches make it hard to concentrate. The faintness makes it hard to do anything active. And in general I have been to tired to want to do anything. Oh, and don't forget the stomach troubles... but I won't get into those here.

All (and I literally mean all, not most, not many, not some, but all) of the nurses and health care professionals I have meet over the last weeks have been flabbergasted that I am on 12 weeks of IV antibiotics. I suppose there reactions indicate how much of a bitch this infection is to oust. Most people, the nurses tell me, are on IV antibiotics anywhere from 7 days to 6 weeks, but they see very few doing 12 weeks. It gets frustrating hearing this all the time. I don't like to think that I have been sick enough to need all this stuff. I don't like to think about everything that has happened and how uncertain things still are. All that I can really do it be thankfully that I am not one of the people who do this for more than 12 weeks e.g. those on chemo of fighting Lyme disease.

After clinic mum and I drove around a bit. It was a beautiful morning - not cold but with a nice breeze and a weak but slowly growing stronger sun. We drove through on of the nicer cemeteries in the city, enjoying the refreshing smell of freshly cut still wet from the last storm grass. We got home and I promptly fell asleep after getting really excited about what came in the mail (Lego that I ordered last week from Ebay!). Sleep is always a great thing after PICC dressing changes because they always make my arm itch an extraordinary amount. Every week on Tuesday I take a nap and by the time I wake up (3:30pm today... bad, I know, but I am just that tired even after a full nights rest0 the itch is thankfully gone. I had a terrible headache for a couple hours, but now (just after 9:00pm) it has let up somewhat. I think I will try to read a bit before bed, or look at my Latin workbook.

I hope I feel a bit better tomorrow. It would be nice to enjoy the warm weather before it becomes unbearably hot, instead of feeling all crumby. Because of the stuff I am on I burn easily so I can't stay outside long, but I should at least try to sit in a comfy chair under the parasol outside.

A new round of firsts

Even seven weeks post surgery there are still so many "firsts" that I am stumbling (both literally and figuratively) upon. I experience these firsts after every surgery, but they always feel the same - all bright and shiny and new. As much as bone infections and surgeries suck, they make a great way to stay grounded when combined together. There is nothing finer than taking pleasure in life's little things when you have to deal with the ups and downs of chronic illness.

What has sparked me to post this on my blog you ask? My first shower since surgery of course! As loving as my mother was to wash my hair every few days, and as refreshing as sponge baths where (not always so much) taking a shower cannot be topped. Hopefully taking a shower standing up will follow soon after, and then showering without my arm all wrapped up in plastic and elastics to protect my PICC line, and not having to worry about 15 000$ IV pumps getting wet...

Long over do update

I've made it to the half way mark. Six weeks down and six more to go! Six weeks and I... and I hope I will never have to go through any of this again.

On May 4th I went for my post op appointment. The surgeon was amazing, as usual (it makes such a difference to have doctors that have good people skills!). He went over everything that had been done during surgery and said he thought he had gotten all the dead bone out and crammed everything full off antibiotic beads and sponges. He was very pleased because he though a lot more would have to come out. He said that I could ditch my trusty arch nemesis (my crutches), which was a huge relief because the bag with my IV pump was always getting in the way. I'm not allowed to do anything but walk until the next time I see him, but I don't have the energy to be running around anyways. The staples were taken out (only seventeen this time), steri strips were put on with a dressing over top and I was good to go. I was given orders to see a colleague of the surgeon two weeks after the IV antibiotics have been finished (my surgeon will be on paternity leave).

This is one of the x-rays taken right after surgery when I was still in the PACU/recovery room before being moved to the orthopedic ward. The gray spots in are were bone had been taken away. Here you can see how deformed my right tibia is. It should be a lot smoother and thinner. 

May 10th I saw my infectious disease specialist. My mom and I had a really long talk with her about everything and all of out concerns and "what ifs". She was really good in answering all of our questions and reassuring us that even if things don't go as planned, we do have other options. She had a med student with her. A really nice (and attractive *wink*) doctor who was studying to be a specialist for pediatric cancer. He was getting some experience in other parts of the hospital because cancer patients can have so many different complications due to chemo, etc. On the one hand it's great that doctors can learn from what I am going through, but on the other you can't help wondering why they look at your case specifically. There aren't that many people with bone infections, and as far as I have been told a lot of the people my ID specialist sees are pretty straight forward cases (meaning no surgery/PICC lines). It was so weird to hear the ID saying she had had a very long conversation with the med students about me the day before. Hospitals are unique in that sense. You have a whole team of doctors who know everything there is to know about your health yet you know next to nothing about them. While there we decided to stop the Doxycycline because I had developed really bad heartburn (which can lead to ulcers) and some other not so pleasant side effects, and went back to the oh so familiar Septra (the name still reminds me of sepsis). The incision still hadn't healed so we put on new steri strips and decided to continue dressing changes. I see the ID again on June 14, when we will schedule my next set of scans.

Saturday the 19th the weekend nurse decided I didn't need a dressing anymore, even though parts of the incision still hadn't healed, so on Monday 21st I asked the nurse to put a new dressing on. By noon the steri strips had turned a yellow orangey tinge. The incision had decided to leak fluid. We kept putting new dressings on until two 1/2 days ago, and everything looked healed up.

Life has been going pretty slowly over the last few weeks. Some days I have a noticeably larger amount of energy, and other days, like today, it is hard just to get out of bed. The last few days the incision site has really been bugging me.  Late Monday evening it started to sting. I thought it might just go away so ignored it. Tuesday it didn't go away and when I looked at my leg I saw that the scar was pretty red and a pit puffy. Yesterday it really hurt and I could squeeze fluid out of the incision. Today it hurts a bit less and seems less swollen but I am nervous never the less. My mom keeps going on about "it looks a bit better", but that was the story with the infection for months and months before surgery. I am afraid that something is still going on. Surgery, antibiotics in my leg, and six weeks of IV antibiotics should not equal a draining incision. It feels like the skin is stretching, which happens when there is swelling. This isn't the swelling from surgery because that had started to go down, and never hurt. This time it definitely hurts and it is really red. I am going to call the ID tomorrow because I am not happy. On top of everything I feel like crap, am exhausted and have been battling a pretty bad headache over the last few days. I am exhausted.

Fingers crossed that everything is ok, but I am a pretty good judge about knowing if everything is doing as it should in my body.

Awsome Omegle conversation

This is what happens when I am exhuasted but can't sleep. I end up on Omegle and having an awsome conversation. So awesome, that I am posting it below (as well ad Facebook). I am the person under "you", and the stranger is, well, obviously a stranger...

You're now chatting with a random stranger. Say hi!
Stranger: hello
You: A wild unicorn appears!
... You: what do you do?
Stranger: I go to try and hug it!
You: It turns and walks away, indicating you should follow...
Stranger: I follow it, excited.
You: It speeds down a gravel road and leads you to an intersection with two paths. Which way do you go: to the left - following an imp into Mordor, or to the right, following the unicorn.
Stranger: To the right! I want to pet the unicorn and see if I can ride it :D
You: It leads you to candy mountain, where you meet Carl (hope you saw the YouTube clip), who automatically tries to eat you. In your desperate attempt to escape you mount the unicorn, but unfortunately loose your left arm and 4 toes in the process.
Stranger: (i've seen it. I can recite it in both English and German :3) I hold on to the unicorn, glad that I'm right handed.
You: The unicorn runs and runs, eventually arriving at a bridge. A wild troll appears. He says you must overcome his trap in order to cross. Do you accept the challenge or turn back?
Stranger: I accept.
You: He pulls out a tasty warm triple chocolate cake and holds it by your nose so you can bask in its chocolaty goodness. He asks "As tasty as this food may seem, why must you never accept a cake? (Hope you get the meme btw)
Stranger: (crap I don't) Umm... because the cake is a lie?
You: Hurrah! You have defeated the troll!
Stranger: Yay!
You: Sulking, he lets you and the unicorn over the bridge
Stranger: Sorry, troll, but I have places to go!
You: Shortly after you arrive at a fabulous castle. You are instantly approached by a knight who claims you to be the true king as you have crossed the impassable bridge
Stranger: But I'm a woman. Kingship is cool, though. I'll take it.
You: Do you stay in the kingdom to rule over your new people, prospering in gold and much much chocolate or do you return to the first path to take your chances in Mordor to possibly gain further glory. Answer wisely, as it will determine your fate.
You: (there is only one right answer)
Stranger: Hmm... I'll take mordor because it sounds fancy. And basking is boring.
You: I am sorry, that is incorrect. However, if you can tell me why it is incorrect you will be redeemed.
Stranger: ... I fail.
You: No guess?
Stranger: nope
You: Alright. It is because "One does not simply walk into Mordor."
Stranger: *facepalm*
You: For participating I award you 5 internets.
Stranger: YAY!
You: =)
Stranger: :)
You: I must go now, onwards to my next victim ahm...I meant, my next lucky participant
You: Yes, that is exactly what I meant.
Stranger: *giggle* Have fun.
You: You too! Have a good night.
Stranger: you too!

1000! Hurrah!

Yay! Sometime, over the course of last night or this morning, I got 1000 hits on my blog! I have to admit, that was a pretty big goal of mine. So let's celebrate! Hurray!

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."