Three Years Post-Op

Today I had my checkup with my surgeon.  I'm three years down the track and he's happy with my progress.  I don't have to go back for another two years now.

It's a great result.

It's a little weird though that something that has been so important in my life is now just a checkup every few years.  Physically it is the best possible outcome.  The journey though has taken me through some really tough times and at some level, fundamentally changed the way that I look at the world.

The main goal that I had going in was that I wanted the chronic, persistent pain to be gone.  As I read back over the blog posts, I'm sure there was more that I could say - for fear of failing.  So long as I got through and life was better than it was before - that would be a successful outcome.

And it is - and so much more.

The whole process has been a catalyst for major change in my life.

It's that turning point where I realised that there were people in my life who were only there because I could help them.  When it was my turn, they didn't like it and it caused all manner of grief.

I realised that I didn't have to live with pain.   Physical or otherwise.  While it's part of the human condition to have inner struggles, I don't think I accept my 'lot' in life as much as I used to.  I can do more - it's now my choice, I'm not as limited by these physical constraints that provided an excuse, a protection from the world.   I've struggled with depression - I've seen a few shrinks - sought out alternate therapies - found a new way.  There have been a few people in this journey who I will be forever grateful to.  They don't even know how important their role has been in sending me off in a new direction.  One day I might tell them - but for now - it's still my adventure.

All I can say is that the whole process was definitely worthwhile.  I've gotten my life back.  It's not the life I probably had planned - it could even be better.

What to say...

I've struggled with this post.  I've tried to write it a couple of times but the words just won't come together.  I'm at a bit of a loss to explain a negative experience that I've had and do wonder if I should just leave it be and keep going with my life as it needs to be or think about it a little longer and share it with people who might be going through something similar.

I have had a lot of really positive experiences over the past week and I do wonder if it is just the contrast that has upset me, that perhaps it wasn't such a 'big deal' and I have made it into one.  I know that I need to accept that some people just won't be able to understand what I've been through and the journey that I am still on and this ignorance isn't necessarily malicious.  It could even be argued that it's because I don't complain enough and make my limitations known more obviously that I shouldn't be hurt when they are overlooked by people that I think should know better.

I've never been comfortable complaining about the things that I can't do.  At some level, I didn't really want people to know the extent of my limitations and as such there were very few that actually knew what it really was like pre-op.  These people were limited to those that 'needed' to know.  The rest would probably knew something was going on but didn't really 'get it' and I never really elaborated.  Post-op, things have gone really well and the limitations that I had pre-op are diminishing quickly but you can't get rid of two decades worth of limitations and compensations in a couple of months.

After such an awesome week, it was a little confronting to be isolated because I still couldn't do something.   The isolation was made more difficult when I was made to feel like I was causing trouble by 'snobbing' the rest of the group.  This has been one of the lowest points I've had for quite a while, one where I felt extremely alone.  A phone call and a tweet helped me to get through the rest of the evening.  I guess that all the other unnecessary tension at the event made me a little on edge to start with and as such I was probably not quite as well prepared for criticism as I usually would be.

Some of the people that I truly expected to understand haven't.   I guess that I had higher expectations of them that were perhaps unreasonable.  

The people that have truly been there for me have been amazing.  You know who you are.  Thank you. 

Hip Flexion Ranges

I realised something on Friday at hydro that I forgot to mention.  I have been a bit hard on myself about my hip flexion ranges and how slowly they are moving now.  On Friday, I tried to get out of the pool using the step ladder, which I knew I couldn't but I wanted to try anyway.  I was about an inch off.  I remembered that a few weeks before I went into surgery, we had to use the outside pool and it doesn't have a ramp.  Reese had to help me get out of the pool because I couldn't do it then.   This is good news to me.

It will be interesting to see if I'm still on that plateau or whether the ranges have increased again.  I'll try again each week to see if I'm any closer to that bottom step.  I'll have to figure out the range next time so I have a pretty good idea of what I'm aiming towards.

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....

20 Days Post Op: 8 Days Left in Rehab

Today the target of going home next Friday has been finalised so the countdown is on.  Obviously this requires a couple of targets to be met.  The big one is the stairs.  Both my Physio and Occupational Therapist agree with me in thinking that this really is a reasonable target that I can meet.  

There have been a couple of positive changes today.  The main one that I noticed is that I didn't require assistance to complete some of the bed exercises which I have been getting a little bit of help with.  It wasn't easy and I wasn't working to my full range, though I was still actually getting somewhere with them which wasn't happening yesterday.  Mostly it was the right leg that I was needing light assistance with for the leg bends where you keep your heel on the bed and for the abduction for the left just to get started off.  I got through them today without assistance which was awesome.  Some of the reps didn't quite look as good as the assisted ones but the milestone is actually being able to do them.  I'm hoping this is an indicator that not only am I getting stronger but that my brain is connecting it all together properly so progression will continue along at a speedy rate.

I have started on little steps today, ones that are about half the size of normal steps so at least I am started on the path towards getting out of this place.  I had two sessions down in the gym today that involved a lot more practice on crutches.  I am getting a little more stable and can already see the difference from when I started yesterday.  I'm still a little way off using them unsupervised.  Unfortunately I change Physio's next week as the person that I have been working with for the last two weeks was actually a locum to replace the person who is actually assigned to me.  It is a bit of a shame as I have a good working relationship with my current Physio and I think that he knows what I am capable of and what to push me to do so that we are seeing results.  (It wasn't his fault that the gym was closed and he wasn't scheduled to work!)  I am sure that the other one is good - it just takes time to get into a routine and build a working relationship with a new person and I don't want that time to detract from the benefit from time that I spend with the Physio.

It looks like I will be going on a home visit with the OT next Tuesday where we will go through everything in the house and see what additional aids I might need to purchase or have installed to assist with me living back at home.  I think that we have an idea of most things that will be required, though there may be some little things that I hadn't considered.  We will need to test things out like getting in and out of the shower, moving around the kitchen and even getting in and out of bed.   It's amazing how many little things that you take for granted and it isn't until you do something like this that you realise the full magnitude of what you need to adjust in your life.  I had wrongly assumed that the limitations that I had before and the things that I had learnt to overcome difficulties would be all of the same things and I would be fine.  It turns out that even though I am reasonably well prepared, there is more than that and I am now aware of what I need and will continue to need for the next month or so as I continue to heal.

18 Days Post Op: Bad Advice

I've had a rant in the past about being your own advocate.  I was on that warpath again this morning after a 2:00am argument with a nurse, who told me to do something that clearly violates the 'Bilateral Hip Precautions' sign that sits on top of my bed.  I could have done what she instructed me to do which some people would I guess but I didn't.  It was bad advice and I wasn't going to take any risks with my new hips.

Basically she wasn't fit enough to assist me to get my feet in and out of bed and was trying to get me to put the stronger right foot under the left to move it off the bed. (I really don't require a great deal of assistance, it's down to gentle guiding as I am holding most of my weight now - at best guess from my best helper, when I'm tired it would be lucky to be a kilo and a half of weight).  What she wanted me to do was in clear violation of the hip precautions as I am not to cross either foot past the mid-line.  I have been given at least a dozen worksheets with pictures with large crosses through them that have people with crossed legs just in case I don't quite understand the concept.  This shouldn't be anything new to this woman as this ward is for rehab and there are always hips being done here.  Maybe there is only one bilateral a year, but even so, it's pretty clear as to what I shouldn't be doing. I said I wasn't allowed to do that and was given a bit of a sigh and at three am, I was silently screaming profanities in my head.  If it hadn't of been the middle of the night and had my brain been in gear I might have been a little more eloquent about the issue than 'I'm not allowed' to at least explain, but in the middle of the night when you've just woken up and you need to pee, reason and alertness usually isn't present.

There is a reason for the precautions - it's to reduce the risk of dislocation.  It's not just because I don't want to do it.  I just don't want to end up back in surgery and starting this whole process again.  I don't think my mental health could handle that.

Getting back into bed I had a minor panic and a 'you've pushed them too close together (my feet)' before we'd even got halfway there.  I received a rather stern lecture about how I should do it so that she didn't have to so so much to assist with my feet in future.  The way I have been doing it is fine with other nurses, wards-men and exactly as I was instructed by the physios but apparently that was too freaking difficult for her and I got told how her way was better because I'm too hard on the nurses. (almost a direct quote - it's better for nurses health if I can do it properly - though I have to wonder why the wardies prefer the physios way if it was physically harder - so I'm not sure what the go is other than she was a cranky ass who was physically unfit for the physical requirements of assisting patients)   Not good for my mental health at the moment to be spoken to like that.  I know that I am unreasonably fragile, but come on, she was unreasonably stupid and mean.  I think that I would have been in better condition than her pre-op which really does make me question how she manages to do the job when there are people in this ward that require more assistance than I do.  I guess she doesn't normally get the hard cases and probably wouldn't have answered the buzzer for me last night if my regular nurse hadn't been on her break.  I didn't realise this though and when I awoke again at 5:45am and needed to get up to go again, I tried to fall back asleep until shift change so I could get someone else to help me out.  When you start to think about needing to go though, it really makes it difficult to get back to sleep.  I lasted about ten minutes, by which stage I thought my bladder might explode and I couldn't possibly wait another half hour, I buzzed again.  It wasn't even as though I could even attempt to do it myself as the rails on the side of the bed were up and you can't put those down when you are actually in the bed.   The nice nurse arrived and I nearly cried in relief.  She assisted me out and commented on how much better I was getting and that I was almost doing it all on my own now.  After getting back in bed, I passed out with relief, feeling a bit better about myself and my  progress again.  I had prided myself on becoming low maintenance to the nurses, it was something that showed how much I had progressed.  I don't need that much assistance anymore, just in and out of bed, teds and meds and these things don't really take too long in comparison to higher dependency patients.   Somedays it seems that the better you get at looking after yourself the more you get shafted (it's not just the gym, its now the grumbles at requiring one assist - even though my chart still says two assist).


The whole situation highlights once again how you need to understand what is happening to you and what treatment you require to ensure that the right processes are followed.  Speak up if you think that something is wrong.  People do make mistakes, it isn't always ignorance, stupidity or laziness where errors occur.  If you know what should be going on around you there is an extra person there to pick up an error before it can occur.  Disaster can easily be averted if you know yourself and your treatment and stick up for yourself.

I should note that on the whole, the nursing staff are excellent.  There have been a couple of moments like this with one or two that really change the whole experience.  It's a shame that poor organisation and a few people really unsuited to the job taint a group of truly extraordinary people.