2014 in Review and What Comes Next?

A lot has changed in my life in 2014.

There has been an overwhelming sense of accomplishment as well as the associated 'well what now' that inevitably follows completing something that you never thought would ever be possible.  This was the theme of my homework set by Julie for the Christmas holidays.

I'm in Bangkok at the moment on my annual break.  This is something that is only relatively new in my life, taking holidays!  The first year that we came here was in 2010, just before I met with the surgeon for the first time.

Travel was never really that high on my wish list - it was uncomfortable, I suffered for days after the flight with pain and stiffness, I could never do as much as I wanted to and it was just easier not to think too much about it.  I also worked a lot...  like a crazy person in fact.  Work was something I could do, something that I could achieve with.   I'm not entirely sure that I had time from the start of 2000 until 2010 that I could have actually gone on holidays overseas for too long.  This isn't to say I never travelled.  I did a few trips with work in the privilege of business class and no time to do too much that was physically demanding.  (There was that one trip to Vegas...  but that's for a whole other post)

So the last year pre-op I went to a city that I knew people and they knew what I could and couldn't do.  They also didn't feel the need to do too much that was touristy and required too much walking.  Taxis were in abundance and were extremely affordable and I had a holiday that fit in with what I could do.

We now return and the holiday has changed a little - we do walk more.  I still don't go to the gym or the local pilates studio as I promise myself each year as I pack my gym gear but my life is substantially more active than it ever has been before.

So the homework....  to figure out what my 2015 goals are going to be.  In trying to come up with something, I spent a fair bit of time reflecting on the year and what I had actually achieved and what had changed.

The highlights:

• I can get up and down off the floor without leaning on anything above ground level
• I can walk 15km and pull up fine in the morning (I could possibly do more - but it's at that point where I'm kind of bored with being in my own head and just want to do something else)
• I walk and people don't know that I've had hips replaced
• My posture has improved substantially 
• I can wear heels (Hey, I know bad for the body and I've always claimed flats are the way to go but it is nice to dress up some times and slide into a pair of Ferragamo peep-toe heels.  My physio says it's ok on occasion too - so I'm in the clear!)
• I sleep better than I ever have before.  I can exist on substantially less sleep than I ever have before.  I prefer to get more hours and quite often do but I can now wake up in the morning before the alarm and be where I need to be without the 
• I can easily do up my own shoelaces.  I could earlier post-op but it still had it's challenges.  It's now just part of real life these days.
• Getting in and out of car - completely changed - it's so much easier to not slide in like a lady and then bring legs in.  
• General flexibility.  It amazes me sometimes that I don't think twice about picking things up off the ground.  That I can bend and reach.  That my balance has improved.
• I actually like physical activity.  It turns out that my old belief that I didn't was really just a function of what I was physically capable of - not actually what was real.  It surprised me.  

The things I've learned:

• To accept that these great accomplishments just aren't as impressive to others.  The things that I get excited about and have shared with friends have often been met with the blank oh great stares.
• To accept that the most important thing to the outside world is the weight that I've lost.  About 14kg.  I know this is awesome and it's been fun buying a new wardrobe and fitting into things that I haven't worn for years, but to me this is just a nice little positive side effect.  I never did any of this to lose weight.  That was never a factor in any of the decisions I've made.  The strength and new found freedom, the blank stare stuff is just so much more important.

My world has changed.  I'm finding myself.  The person that I never thought that I was.  The person that I never even thought about being because it was so far removed from what my reality was.

I didn't quite make it to figuring out what the goals were.   I started by looking at the suggestion of Kokoda Trail - but it didn't jump out at me.  It's not the distance.  This is a pretty great challenge that meets the criteria of a suitable challenge in that I would require a fair bit of training to be able to achieve the goal, and yet still it's just not quite right.

The Bhutan Trek to Happiness walk as a fundraiser for the Black Dog Institute interested me more - but it wasn't really challenging enough to be a goal for the next stage of my development.  I think I might still do this one day - but it won't be a goal, just something that I'll do for fun.  The fund-raising side to this event would be the biggest challenge.

I'm still looking.  I'm sure it will come to me soon and in the meantime, the search is fun.  I've thought of and found a lot of activities that require another look at now that I have this new found freedom.

Things like:

• Going to an all day music festival and be in the mosh pit at least once.  
• Indoor rock climbing
• Abseiling

If you can think of anymore - please post!!

I'm looking forward to spending more time on this little homework project in the coming weeks.

My History and Pain Management: The Beginning

In the beginning, the pain was bad.  In my eleven year old experience, there wasn't anything comparable.  Not even when I needed seven stitches and they had to scrub the gravel out of my knee when I was ten was that bad.  It started off in my right hip and soon after I wasn't able to bear my own weight on my hip joints as it hurt too much.  When I was first hospitalised, I was put on high doses of asprin as even though they had a fair idea of what was wrong with me, there were a number of things that needed to be ruled out before they could treat me with arthritis drugs.  I guess the asprin helped to some degree but it also put trains in my head.  I could hear them above all else choo chooing their way past my ears.  Over time, a diagnosis was made and I was put on prednisone and Voltaren.   Other drugs were trialled in the first year.  I don't remember all of them.  The one that I do remember was something called Intragam that was a blood product that was supposed to help fix whatever was wrong with my immune system.  It was a series of infusions that I had to go back to hospital to have.  I don't think that any improvement was associated with this treatment as I only had one series of them.  My condition was pretty nasty for about a year.  Prednisone and Voltaren were prescribed.  For the first year I relied on a wheelchair.  In the very beginning and for the first six months or so I couldn't bear my own weight.  I could take a few steps but I would need to be supported or learn on walls or other things to help take some of my weight.   After then, things started to get a bit better.  After about a year I had the strength to walk again.  I'd never run any marathons (or any race really) but I could get around.  At about that time,  the meds managed the pain reasonably well.  I had good days and bad days and over time the good ones outweighed the bad.  I don't remember any really bad flares after then.  I didn't miss out on much at school except for sports and I can't say with any certainty that I was disappointed.  It just isn't something that I remember.

I ended up on Voltaren as the longer term solution.  The next decade went pretty smoothly and the meds dropped to 50mg once a day.  I knew when I missed them but otherwise there was nothing to really complain about.  I misbehaved like most 17 - 19 year olds (Actually this probably went on until at least 21 if I am going to be completely honest).  I think that the Voltaren did it's best work with the sore muscles and bruising on my shins from being pushed up against the speakers on the stage on Friday and Saturday nights in the mosh pit at Her Majesty's Bar (only when Blah Blah Blah and Alimony were playing - was almost my whole 18th year out on the town).  I wasn't any worse off the next day than my healthy flatmates.  Sometimes I think I even fared up a little better.

You can't be 18 forever but life really didn't change noticeably until I was about  22.  It was about then that I started to need to increase the Voltaren to 100mg a day every now and then to accommodate for the times when things went wrong and I didn't pick where my limits were.  It only really occurred if I overdid it and mostly I was pretty good at managing my days so that I didn't push it too far and ended up in pain.  My range of movement had started to slowly diminish and the limits that I had were slowly decreasing.  It wasn't anything that caused any huge disruption to my life and the things I wanted to do, I just new that things were changing.

About ten years ago now, a friend of mine had been telling me about this fantastic Physio that I just had to go and see.  He and his wife had fantastic things to say about this guy.  I was skeptical.  I had been to see physios before.  They were there to make sure that things didn't get worse.  There to make sure that my range of movement didn't decrease anymore by doing one boring exercise after another.  Physios meant splints to make sure my joints didn't get anymore deformed. It was the same thing over and over.  It almost seemed like giving up.  I did have some lovely physios when I was in hospital as a child but I didn't see positive results.  Or at least not positive enough to remember when things were so horribly painfully.  Unfortunately, at that time in my life, there probably would have been very little that brought positive relief to me.  Managing my condition at that time was about making sure that the active disease left behind as little disfigurement and damage as possible.

I don't even remember what prompted me to actually get over my preconceived ideas to make the phone call to make that very first appointment.  I guess to some degree I was curious as to what could possibly be different about what this guy did that was any different to make so much of a difference to my friend.  The concept of life being better for my friend was enough of a lure to at least try.  I wasn't completely convinced that anyone could do anything to help me feel any better.  I was living the best life that I could.  There was pain and limitation and I did need to make accommodations but life was good.    Besides, it wasn't my muscles, it was my joints and the damage left behind from it's earlier activity.  What good could more exercise do since I was fairly well adept at managing myself to the limits.  Oh hell, what was the harm in trying.  Even if it didn't work out, at least I'd tried.

I don't even remember that first appointment at all.  Something must have made me trust that this was something worth doing.  Something must have at least dented my preconceptions about what physio was and what more it could possibly do for me.  Over the space of the next ten weeks, Paul worked on releasing the muscles and connective tissue.  I'd walk out feeling like I was floating or walking on pillows.  I didn't realise until then how much of my pain wasn't actually my burnt out joints, but the muscles surrounding them that were so tight, a tight that couldn't really be stretch out due to joint limitations and the limitation of my knowledge of my own body.  By that point, I too referred to him as magic.

After a few weeks, inspired by some pretty amazing improvements in my range of movement, posture and overall positivity and feeling of wellbeing, I decided that it was time to check up on everything and I went in search of a new rheumatologist.  I'd booked an appointment soon after my trip to Melbourne for a conference.

By the time I went to Melbourne, I had been to about six extended sessions with Paul.  Coming back, I happily reported at how much more free I felt, how much further I could walk without pain, how far the 'limits' of my days had been reduced.  In just six weeks of treatment.  I wasn't ever going to get all my range of movement back as the joints were just too damaged but some of it was returning.  The most I could get out of life was so much more than I thought it was.

This really was the beginning of a whole new story.

To be continued....

28 Days Post Op: Going Home Day

Today was the last day that I would be woken at 6:00am, 6:15am, 6:30am, 6:45am, 7:00am and 7:15am at which point I would usually be kicked out of bed.  Hospitals are like alarm clocks set by some evil person for an ungodly hour with a snooze button that keeps going until you are forced out of bed.  Going home day is exciting as well as a little bit daunting.  I was pretty confident that I was ready for it, though it is hard to know how I'll be able to handle everything until I got here and settled into a routine again.  I think it might take a few days to get to that point.

Prior to leaving the rehab doctor came passed to ask about the drama that we had last weekend.  Since I was actually at the point of getting out of there, I didn't see the harm in talking about the issues that we had.  I didn't really want to get into it while I was still there as I didn't want to have to deal with people that I have had issues with if they knew that I had made a complaint about them.  The doctor wants to address issues like these when they happen so that they can be fixed.  I understand what he was saying and had I been at a fully fit and independent state, I might have done so but having to still have to stay there and be reliant on these people, I really didn't want to rock the boat.  They were still able to identify the bad advice nurse since I knew what day I blogged about it.  I also told them about the 'good chance to be normal' comment and the other things that happened during the infamous physio session.  I'm not sure if there will be further training or what the repercussions will be but thankfully I won't suffer any consequences for it.  The doctor asked us to speak to the head of nursing about the issues as well, and she said that many people feel the same in relation to 'retribution' and fail to comment which doesn't help them improve the level of service provided.  Apparently it doesn't happen but I can't see how it wouldn't change the way that the spoken to person would react the next time that they had to deal with me.  Anyway it is all done now and I'm home!

On the way home we stopped past the mobility place and got the last couple of things that we needed for me at home.  I am now equipped with a granny wheely walker so that I can carry things around the house, specifically the kitchen and have a perch stool to sit in while I'm in the kitchen.    The main issue in the kitchen was that I am physically able to cook or make a cup of coffee or whatever it was, but I couldn't actually carry something out of the cupboard or the fridge as I am using both hands to use crutches.  The wheely walker means that I have a tray to put things on and both hands are still on the walker while I am walking.  Problem solved.

Stopping on the way home meant that I was in and out of the car twice which was an achievement.  Getting home seemed like an even bigger one.

25 Days Post Op: The Home Visit

Today I got to go home for the first time in almost four weeks.  I went for about an hour with an occupational therapist to check things out in anticipation of me getting out of here on Friday.  My big achievements that were made today were getting in and out of a car twice, getting up my front stairs at home and getting up the inside stairs and out of the house twice.  (We really were only going to do it once as the point of the exercise wasn't to practice multiple times, just to check out how to handle things - but nothing ever goes smoothly and there were of course issues with the alarm that had to be sorted out before we could leave - typical)

We have sorted out the shower chair and I have figured out a place to put the crutches so I can get them to get out and we also sorted out the raised toilet seat as the toilet was too low and I would have violated hip restrictions without the higher seat above it.  These are the main two things that needed to be sorted out so that I can actually survive at home.  Good news was that our bed is also the right height and the only thing we really need to sort out is another comfortable chair to sit in when I am up.  We are going to look at one of those recliners that tips you out but I think we will need to go and actually look at some and see what is comfortable and high enough that doesn't dip back to much at the back of the seat.  We'll get home first and worry about that one early next week.

I am becoming more confident on crutches and though it is tiring to walk around, my stamina is increasing and I think that is making the other hurdles a little easier to overcome.  As my mobility is increasing, my hip flexors seem to be getting a little stronger as I am starting to see that there is a slight difference in the amount that I can lift my feet off the ground.  Today I spoke with the Physio that will be in charge of managing operation awesome (bugger normal!) also known as my home program and once targets are met the ongoing maintenance program.  It isn't going to be any problem at all to be re-assessed and an appropriate program written to strengthen up these stubborn little muscles that haven't yet joined the party.  I am looking forward to working with the Body Leadership Team again as I really have missed working with those guys!   Speaking of people I miss working with, I miss Pilates too - though that might be a little while before I am back to my usual schedule.  I can at least do bridges now (pelvic curls) and they are slowly getting better even if I am a little way of my pre-surgery capability.  It's unlikely that I will be using the bosu or a fit ball for a little while yet!  It's a step at a time at the moment and I know that once I'm home and under expert guidance that I will be making those steps at the right time and maximising the benefits that I will receive from the new joints in the long term.

Pain meds were reduced today and so far I am going ok.  The nights are the big test and those haven't been reduced yet so I am pretty confident that we are on the right path.  Today was a big day and so far there isn't much pain.  There is some muscle fatigue and aching though this is to be expected and isn't anything that is going to keep me awake.  I am hoping that what I feel now continues to be the worst of it as it certainly is manageable at this level and the level of activity I can do before it gets to this level is significant enough to see progress.

After the excitement of this morning I had a quiet gym session this afternoon with the regular drills.  We didn't do steps again today as there were probably as many today as the amount we did in practice yesterday.  I'm sure we will be back on them tomorrow and in the 'fine tuning' mode to work on not using the grounded leg to provide the extra clearance space required by pushing up on the toes slightly.  I'd guess and say I'm probably about an inch off that and I would expect to see that amount picked up in the next week.

All in all a good day with the slight exception of the possible cold germs that I may be carrying.  It might just be the really dry air-conditioning that is drying my throat out and causing me to start to lose my voice.  At least I hope that is all that it is and as soon as I am back in my regular environment everything will go back to normal.

It is time for sleep now.  It has been a really long day.  I hope I'm worn out enough to sleep in more than two hour blocks like last night.  Fingers crossed!

I just figured out that since I don't have to stay here all Friday and today is already gone, the countdown was actually wrong.  I only have two whole days left, Wednesday and Thursday!!

12 Days Post Op: Progressing Well

I am progressing reasonably rapidly at the moment.   I still require some assistance to survive the day, though the amount of effort required from the 'assistant' is reducing as I am starting to be able to use more of my own strength.  I am still a little way off being a superstar of the rehab process but I think I at least deserve a gold star for effort!

The main area where help is required is to get in and out of bed.  My legs are still too heavy to move around from a laying ore reclined position in bed around to the side of the bed without a little help.  It still astounds me as to how much weakness that there actually is.  I understand the concept that I was cut open, bone sawed off, extra pieces put in and all sewn back together again, however, I just can't seem to grasp how this makes all the muscles go to sleep.  I understand that muscles will waste if they aren't used but still it hasn't been that long since they were used properly.  I guess that I have underestimated the amount of activity that I actually did do in a regular day even if there were a few lazy ones back to back sometimes.

It really is a vicious circle that needs to be broken out of as quickly as possible as when you are weak, activity is difficult, slow and you do less of it.  The less you do, the less you can do.  As an example, Pre-surgery simple activities like going to the bathroom aren't a planned and executed event, you just go and think nothing of it.  Post-surgery they are. In addition, middle of the night trips become a major exercise so returning to sleep isn't particularly easy.

I don't think that I started down that path of doing less and less, which is extremely positive.  I was lucky that even though I was ill for the first week post-op, I had the encouragement and assistance that I required to get started on the path to recovery.  (Even when I was high on oxycontin the first time I had it ever and was freaking out and throwing up, I still tried something.)  Each day I get stronger and have both more ability and more endurance to complete the exercises and add new ones in.  I'm hoping that this continues for a while yet as I still have a number of old skills to remaster.

The big one is walking.  I am currently using a rollator/gutter frame that looks like this to walk.  I am using significantly less pressure through my arms and walking is slowly becoming more fluid.  It is more difficult to walk in the rehab gym on the bars, though this too is getting easier as time passes.  The bars are a prelude to crutches which I will need to be an expert on before I am allowed to go home.  My left side is still recovering from a bruised nerve and is weaker than my right side.  There may have also been a pre-existing weakness in this side that I wasn't aware of as it was the side that had the most joint damage.  Thankfully I was still able to have the BMHR on the left and it didn't have to be changed to a total hip.  Surgeon's skill or luck or likely a lot of the former and a little of the latter, I don't know, I am just grateful as it will make revision a little easier.  As I walk without pressure through the arms, I fall into the left side as the hip stabilisers aren't there yet.  I have added in other exercises to start to encourage these guys to fire and work a bit harder.  The residual numbness in the left side is almost gone, so hopefully we will soon see strength returning a little quicker than it has on this side so far.

Sleep is still difficult and is likely to continue to be for a little while yet.  I have started to get into a little bit of a routine in which I am able to get about 3 hours before waking to get up and move around for a bit and then back to sleep again a half hour later for another 3 hour stretch if I am lucky.  There is always further little sleep time depending on waking times, though this can be as little as an hour.  I manage a nap in the afternoons before the afternoon rehab session or in the early evening before my 10pm meds.

I am spending a higher than normal amount in bed and suffering muscle tightness in my mid and lower back.  The periodic muscle pain is pretty much all there is as the actual hips themselves are pretty much pain free.  There is still a lot of swelling left and ice is one of my best friends.  As I understand it, this is pretty normal and will continue to be this way right throughout the rehabilitation process.