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.