GP Checkup, Bad Seats and Regular Days

The last few days have seemed busy even though I really haven't achieved a whole lot.  I couldn't even tell you when the last time was that I wrote a blog update without checking.  Hey, it was that entry Pain management: in the beginning - that still needs to be finished!  There is so much more to add and it seems like most days I'm just too busy to sit for a few hours and get the details down.  It's a little odd considering that I haven't really been anywhere for ages.  The every day bits and pieces haven't really been covered for a little while either and there are a couple of things that have happened that rate a mention.

Physio on Friday was good.  It wasn't much of an exercise day as we focused on releasing some of the very tight muscles that had been driving me crazy.  Even though I had been trying to release them myself, I hadn't quite gotten to where I needed to be and needed some extra help to get there.  I felt a hundred times better by the end of the session.

When we did the range measurements for hip flexion, it was actually my knees holding me back in the active range.  Once we released these, I ended up with an extra 5 degrees more than the previous measurement.  (If you need a visual on this one to understand what on earth I am talking about:  Laying on your back, slide your heel up towards your bottom making sure that your pelvis stays straight - so other leg straight and level on the bed.  The active hip range is measured in this position.  The passive range is measured by having your leg lifted to table top and moved towards your chest.  For me, there is a few degrees difference between the two)

So while all this was going on, the landline rang in the lounge room which is a fair way from the bed where I was getting measured.  I elected to ignore the phone as the only people that have it are the hospital, the red cross and the alarm company and I could see no reason why any one of those would be calling me since I've been to my post op appointment, spoken to the red cross in the last week and I was in the house so the alarm can't have been going off.  After it stopped ringing, my mobile rang.  It was the alarm company.  They were just checking to make sure that the alarm was still working since it hadn't been armed in such a long time (maybe two weeks).  We had to go outside the house and arm and disarm while I was on the phone so that they could confirm that it was all working properly.  How very embarrassing.  A reminder that I hadn't gone anywhere in two weeks.  Hopefully I'll be driving myself soon and will be a little bit more independent.  Even though I am quite comfortable at home and can fill the days, I think that getting out a bit more would probably do me some good.

I didn't really do anything out of the ordinary on Saturday.  It was a day for sleeping in, getting my exercises done, making sure that I did a few extra trips up and down the stairs and I watched some tv.  My husband was at home but unfortunately he had to work most of the day so I was pretty much left to my own devices.  

Sunday we went out to lunch at my mums place.  It's the longest car trip I've had since pre-op and it went ok.  The seat that I sat on for lunch wasn't really that great though and I came home a little bit tired and tight.  This probably wasn't just a bad seat for me but more that since I went out and it wasn't an activity where I had to walk very far that I didn't have the same level of activity on that day.  I am used to doing a far bit now, even if it is just around the house and a day where the activity levels drop seems to make more of a difference than I thought.  I still only needed a couple of Panadol Osteo to sleep, so I guess it wasn't too bad.  I'll have to make up for the lack of walking today.  

Today I had a GP checkup.  Primarily it was to sign some paperwork so that I can get some extra physio rebates from Medicare as I have a chronic condition (I'm sure you've figured this out by now!). While I was there I checked on my blood work (all good, inflammatory markers a little high but nothing that wasn't expected), got a flu vaccination and went through the changes / improvements since my last visit.  The doctor seemed really happy with my progress.  He has seen some bilaterals before so I guess he has some basis for comparison.  The main changes to report were the lack of medication required, using one crutch most of the time, hip restrictions gone and improvements in ranges.  

Things feel like they are going so very slowly at the moment.  It feels like the improvements are slowing down.  It's hard for me to see the differences between each day as it is taking more than a day for the differences to add up to something substantial.  The last big one was being able to balance on my right leg.  I'm not sure that there has been anything new since then.  

I suppose I could say that sitting on a regular toilet seat and managing to get back off it was an achievement.  I'm not sure if I could have done that a few weeks ago (I wasn't allowed to try until I got off hip restrictions anyway).   I thought I would give it a go on one of my trips downstairs to practice stairs.  Since it has been two months since I sat on a regular low toilet, I really had forgotten just how low they were.  I'm not sure who came up with that idea but it truly is crazy.  The height I have now (with the over toilet height adjustable seat) seems far more reasonable.  I guess I will have to practice and get used to it the more I am gong out in public though.  I wonder if getting on an off the toilet could be classed as adding an exercise to my day?  I suppose it could be if I drank a lot of water, right?  Anyway, it was just as well I had practiced before we went out on Sunday as I was prepared to use a regular height toilet and it all went fine.  Sometimes I really do wonder how it is that everything seems to end up a conversation about toilets these days.  

I fit into my regular size jeans again.  This means that the swelling has gone down and my thighs have returned to their normal size which is positive.  The knees are still swollen and really should be iced but it's too cold! I know I'm a wimp.  Strange really that I get through a massive surgery like this and what I want to complain about is that it is too cold to ice my knees!  Some would also say that it really isn't cold in Brisbane but it is to me as I've lived here for many years and am well adjusted to this climate.  I really should do it in the mornings when I'm sitting out the front in the sunlight drinking my coffee.  It probably wouldn't be too bad then.  Maybe I'll try that one out tomorrow and let you know.

The big exercise for today will be grocery shopping this evening.  We need fresh food.  There is half a lettuce and two carrots left in the fridge and I really feel like a big salad for dinner.  Even though we really only need to go to the fruit and vegetable section, I think I'll need to go down as many of the aisles as I can because I need to know if I can get any further than I did last time.  I think that I'll still take the wheelie walker in case I need a seat.  There are some seats in the centre of the complex, outside of the supermarket, so maybe I could take my crutches.  The crutches are definitely more comfortable to walk with but I'm not sure on this one.  I might have a chat to my husband and see what he thinks.  As in, if we take both and I use my crutches and I think I need the wheelie walker will you go downstairs and get it?  or can we take both and you push the wheelie walker until I need it? Not sure how this will go down.  It's worth a shot though, right?  If I'm not completely wrecked by the time we get home, I'll update this post.

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....

Pain Management and Healing: Part II

After the abysmal failure of oxycontin and endone, a solution of ibuprofen and panadeine forte was suggested (all at the highest possible daily doses).  I was a little scared of the ibuprofen as some of the nurses had gone on about it upsetting my stomach again.  I was already on maxalon to stop vomiting and I didn't want anything that could start that again.  I asked the doctor if I could take the Voltaren again instead.  One said yes, one said that the Voltaren was more harsh on the stomach.  The reason that I had asked is that I new that I didn't have any adverse affects to it and while I was still in a paranoid sick state, I really didn't want to take any more risks.  In the end I tried it and it was ok.  I was still on the maxalon for a while as I still had nausea problems when I ate (though that very well could have been a problem with hospital food - not actually meds or illness).  Together the ibruprofen and panadeine worked out and there weren't any further adverse reactions.

There was some other drug that I could try if this didn't work out though from what I can gather the back up plan wasn't a favourable one.  In the beginning as I got closer to the times when I was due to have medication, I would wait on it.  I knew when it was due as the discomfort was increasing.  I never waited so long that it was unbearable, though there was one day when they were just over an hour late and I was stuck in a chair in my room when I really was ready to press the buzzer again almost at the point where I thought I couldn't handle it anymore.  I still wouldn't say that the pain was high on the pain scale, maybe a five, but I was exhausted and I felt like I didn't have the strength to hold my body up any more and everything was uncomfortable and I wanted to move but I couldn't.    I had learnt the hard way that the doctors were right, staying on top of the meds at that point was important to my rehabilitation.  There was no way that I was doing anything that afternoon for at least three or four hours while I rested and got on top of things again.  Normally I would have done another set of my physio exercises.

In the last week or so we started to cut down the amount of codeine that I was having, so the panadeine forte was changed to panamax and codeine tablets.  I didn't notice a huge difference.  During a big rehab day, I'd say I was more aware of the joints but overall I wouldn't say that the pain had increased.  There certainly wasn't any sharp pain anymore, just occasionally a dull ache which was only a one or two on the pain scale and significantly less than what I was used to pre-op.  I had started to be able to stretch some of the muscles a little and as my overall wellbeing improved, my confidence in my body also started to improve.  I think that this was the turning point for getting results as I was less tentative in trying to trigger point tight areas (obviously within reason - I wasn't digging into the wound just yet) and moving more (within the range of restriction).  As muscles loosened, I felt that I could do more and it felt like the joint was moving more freely and with more control.  Exercises like heel slides on the left and abduction were still difficult to start off but I could do a lot more without assistance and I could now visibly see some definite results.   The more I could do, the better my body felt.

Pain Management and Healing: Part I

I have touched on the issue of pain management in some of my other posts though the issue really does need a bit more attention as it really is a major issue in my history, decision making process, post operatively and even now as I am on the recovery path.  Since I've been asked recently about my current pain levels, I'll start with the present and work my way backwards.

Today, I'm taking Panadol Osteo at night before bed.  It's nothing really.  I've gone without it for a couple of nights in the last week or so as well.  Since I've been home, I've been choosing the level of medication that I require on a day to day basis.  After two decades of managing pain I get it right most of the time.  Throughout the rehabilitation process they tell you it's important to stay ahead of the pain as it's more difficult to fix the problem after it's gotten too bad.  Bad pain also restricts the amount of exercise that you are doing which can delay recovery times so it makes sense to manage the medication carefully.  On the flip side of this, I want to be off medication.  Being off anti-inflammatories was one of the hopeful outcomes for the surgery which I have now met so I've moved the goal posts a little.  It won't be the end of the earth though if I need to take two panadol at night for the rest of my life.  It certainly is better than the other meds that barely managed the pain pre-op.

The pain I have now is only muscular.   The joints don't hurt.  They move freely and don't grind or stop me from moving.  I'd say that the pain that is left is probably similar to work-out pain (without straining anything).  If the worst pain I had pre-op was a ten, I'd say today was only one or at most a one and a half. (I'm sure that there are things more painful that my worst flare but for the sake of the scale, I'm putting the worst one up the top end and working down from there)  I'm completely worn out and everything feels fatigued but it isn't real pain.  There is the friendly muscle ache going on letting me know that I did work hard today and my body really has had enough for the day.  Every now and then it's a little sharp if I sit too long and stretching and moving will help release it out.

A lot of the exercises that I am doing are to build the hip flexors and hip stabilisors.  To work these a lot of other muscles are getting a work out as well.  Pretty much everything around that area needs to be stretched out as it gets tight.  The adductors are some of the worst offenders.  Gluteals, quads and hamstrings are pretty close behind.  The muscles that are above the top of the pelvic bone on the right side are getting a bit of a look in at the moment too as I am practicing walking on one crutch. Knees ache and are swollen a bit more than normal.  They are getting a work out too given my gait has changed as I'm straightening up and not compensating as I used to pre-op.  As the muscles strengthen, I'm able to do more before things get worn out.

Over the years of working with Paul at Body Leadership, I have learnt a lot of skills to help relieve muscle pain.  Squeeze, Stretch, Trigger, Move are the four tenets of body maintenance and when applied make a massive difference to how my whole body feels.  I probably won't explain this anywhere near as well as either Paul or Reese would but I know what I'm supposed to do and they check in regularly to make sure that I'm doing everything properly and add in extra stretches and exercises to my program. Trigger pointing myself isn't anywhere near as effective as when either of those guys are doing it either, though it does make a huge difference.  Pain is more easily managed with the help of these guys.  I can't wait until I can comfortably lie on both sides on the beds at the clinic so that I can get all my connective tissue released.  The thought of all the muscles all loose and nice feels like floating which would be awesome right now!

When I'm in bed I can lie on the wound on either side. The time limit before I have to move is a couple of hours so I am waking to move still and as time goes on, I can stay mostly asleep to move so my sleep feels less interrupted and I wake feeling like I have actually slept.  It's probably close now as I can comfortably rub a moisturiser into it and put quite a bit of pressure into it.  Apparently this is good thing to do while the scar tissue is still pliable to try and minimise it.  I've only really just started this in the last week or so as I've been pretty tentative with it until I was sure it wouldn't hurt.  I don't think I'm going to end up with a really big scar anyway as it looks like the surgeon has done an awesome job putting me all back together again.  The line is quite a fine line and a lot less than I would have expected when you consider how deep the incision would have been to get down to the femur.

When I arrived home from hospital, I was taking the maximum dose of ibrupofen and panamax.  The dose of codeine that I was taking had been cut down to 60mg at night and three lots of 30mg through the day.  30mg is what is in a single Panadeine forte tablet.  Codeine is an opiate and it isn't one of the common ones they use for pain management for this surgery apparently.  The narcotics usually prescribed are oxycontin and endone which I couldn't take as I had a bad reaction to them.

I hadn't really thought of Panadeine Forte as a stong pain killer.  I guess that's because if I had used them pre-op to handle pain and I thought that post-op the pain would be so much worse and I'd need something so much stronger.  Surprisingly I didn't.  The surgical pain really wasn't that bad.  Don't get me wrong, I wouldn't have wanted to put too much pressure on the wounds in the early days but mostly the site was numb around the wound.  It isn't completely back to normal yet but it isn't numb like it was then.

Every now and then there was a quick sharpness but it didn't last.  I like to think of it as the point where the nerves that were healing were first taking the electrical impulses through them and that first sharp pain is the first one as it pushes through the damaged piece the first time to forge the new pathway.  I'm not sure how it really works but the visual of that made the whole thing a bit more positive in my mind.

The most pain I ever had was the second night in the ortho ward and it wasn't in my hips or legs.  It ended up being my back from being in one place for so long without moving.  The first night I still had the PCA to help out but the second night it was gone (I think the PCA is the name for it.  It is the button that you can press to self administer drugs straight into your drip.)  The night it was gone things weren't as comfortable.  I'd also lost the air mattress thing that I had in ICU and they don't roll you in the ward to help relieve the pressure.  The next day I managed to get the air mattress back and that made all of the difference.  Over the next few days I could move a bit more, they got my haemoglobin under control and sorted out meds that worked and I was starting to sleep for a couple of hours at a time which helped.  I think this is the main reason that the goal is to get you up and moving the day after surgery.  Unfortunately when that doesn't happen, muscles start to tighten up and within two days muscles start to weaken.  So I guess the moral of the story is to at least try to get up the first time the physios come in.  If it works out, you'll be so much better off.

When I moved to the rehab ward, the back pain moved to further up the back.  I'd lost the air mattress topper again but the pain was likely from poor posture while using the rollator.  The muscles across the middle were really tight and difficult to stretch out.  I found that the solution was a rolled up towel that I lay on as it ran down the length of my spine and my shoulders could fall back over it and get a good stretch.

Unscheduled Daily Activities

Some days I wake up and everything feels good.  It feels like I could get out of bed and things will just work like they are supposed to.  It certainly feels like it.  There is no pain anymore.  It isn't until I start to get myself out of bed and the sleepy haze wears off and I realise that things aren't quite there yet.  There are still a lot of exercises to get through and a lot of strength to still build.  I started of the day in quite a positive mood.  Last night while doing a few extra exercises, I found I was able to balance on my right leg without any support meaning that strength is returning to my hip stabilisors.  These are an important part of actually being able to walk without the crutches.  The left is still far to shaky to take the support away yet but hey, one out of two aint bad.

Daily activities are a huge part of building strength.  Incorporating activity into the day, even to add an extra trip up and down the stairs all makes a difference.  A piece of advice that I was given before I had the op was to do just one more than was on the list of prescribed exercises (without overdoing it - so I have to listen to my body pretty carefully so that I am pushing myself without hurting something that would stop me from doing my exercises the next day).   Using that theory, I have been trying to add more into each day.  Sometimes circumstances make this happen without me actually having to try.  Life often throws unscheduled curve balls just to keep things interesting.

Today, it was attempting to wash the car.  For those that know me, this really will seem like a very strange thing for me to get up and do.  I had a pretty good reason for it and the process was somewhat of an effort that I really hadn't considered being the 'activity' to add to today.  There was bird poo (or possible bat poo - it was brown and stuck like glue) on almost every single panel on my beautiful black car.  There was splatter absolutely everywhere.  I'm really not sure how it was entirely possible for this to happen without a flock of awful little animals deciding to specifically seek out and target my car.  I noticed the big splotches when I went out the front to sit in the sunlight to drink my coffee this morning.  A couple of weeks ago, I probably would have resigned to the fact that it would have to stay on there until someone else was around to take care of it as it slowly ate into the paintwork.  Today, I thought that I had the energy to give it a go.

I went downstairs and started to soak the large splotches with the car cleaner, I notice more on every single panel.  I probably spent about an hour shuffling around the car cleaning it as best as I could while my crutches were leant up against the bin beside the car.  I needed both hands, one for the car cleaning spray and one for the cleaning cloth.  I did ok as I moved around the car, though they aren't really real step yet, still more of a cross between a shuffle and a waddle.  After I had completely trashed three cleaning cloths, I called it a day and had another shower to clean the smell off me.  I don't think the smell really was on me but my brain seemed to think that it was and I needed to be clean again.  The cloths also needed to be cleaned and that required two trips up and down the inside stairs.  The stairs are slowly becoming a little easier.  The inside ones are narrower than outside but they seem to be not quite as high, so stepping up without vaulting isn't quite as difficult (still not easy, just not as difficult).  Overall this little unscheduled activity added a fair amount of incidental exercise today.

I am pretty worn out tonight which is a good sign that I have expended sufficient energy today.  Another day has passed on my trip to recovery and hopefully tomorrow morning I will wake again feeling good and it will be just that little bit easier to get out of bed.  I hope that my unscheduled activities that unexpectedly get added to my day tomorrow aren't quite as smelly as they were today.

Mr McMinn comments on ABC's Four Corners bash up of hip resurfacing

There was a recent Four Corners program that was rather negative about hip resurfacing and metal on metal prostheses.  It focuses on the ASR device that has been recalled and applies these statistics across a field of other devices that have had significant success.  (Like the side note of the post 'Six Week Surgical Review', the negative effects of metal ions are overstated compared with research based evidence using larger sample sizes)

Mr McMinn responds to the program with an article on his website: http://www.mcminncentre.co.uk/response-abc-corners-program.html
(McMinn invented the BMHR that I have and has had great successes with his previous invention the BHR resurfacing device.  He is regarded as an expert in the field by many and above average survivorship rates clearly support this)

The key statements that resonated with me are:
"It would be unfortunate if the adverse results from a few ill-designed, poorly implanted devices are allowed to throw this excellent treatment option into disrepute."
"It must be remembered however that component malposition is a cause of failure and should be avoided. Choose your device and your surgeon carefully."  

Well designed, well implanted devices have changed so many lives for the better.  I hope that people looking at resurfacing consider all the research out there and not just the sensational media reports.

The Essay: To JRA kids

I was eleven when I was diagnosed with JRA.  Soon after I heard about a summer camp being held in Perth for kids like me.  It amazed me to think that there were enough kids out there going through this horrible process to have a camp full of them.  The only other kid I knew with JRA was Bradley and he was a lot younger than me so we really didn't talk too much.  I felt alone at that point in my life and a camp sounded like an awesome idea.

The problem was we couldn't afford for me to go.  To get a sponsored place I needed to apply for a scholarship and that involved writing an essay about how JRA had affected my life.  I'm sure at this point the blood drained from my face as contemplated exactly what they wanted.  In my twelve year old brain, JRA hadn't just affected my life, it had completely ruined it and I knew that they didn't want to hear that.  I was sure that they wanted some fluff piece about I had overcome adversity and beaten the odds to become this stronger, wiser, somehow better version of myself.  Even with the imagination of a child, I couldn't do that.  I couldn't comprehend the idea of a world where my life would be OK with JRA.  Then I would doubt myself.  What if I was wrong and they wanted the truth, that I couldn't see how it was possible to have the same opportunities as my friends, that life wouldn't be the same and I would alone...  forever.... What if the sob story sold and I got my place out of pity?  The same pity that was on the faces of the adults that surrounded me.  I didn't want it if it came with that condition.

Worse still, what if I told my story whether it was the truth or the fluffy version of it and they didn't want me there.  What if I found out that I wasn't good enough?  I was probably different than most of those kids too.  Kids that could still actually walk without help.  Kids who's lives weren't quite as broken as mine.  Those that had figured out a way to write the essay about the happy times and how much stronger and better they were than me.

The truth was, I couldn't deal with my condition.  I couldn't control it.  I couldn't control anything in my life.  I tried once.  To control it.  To take my medication or not to take it.  It didn't make me feel better. It just made me sore and I got in trouble.  Why would I do that?  Why wouldn't I do what I was told?  Do I think that I'm the only one going through a difficult time?  Why didn't they understand?

I couldn't see a way of growing up and being anything but that sick child that needed so much help from people that tried so hard to understand but just didn't.  I didn't know what I wanted or what I needed.  I know now that all I really needed was to feel like I had value and a belief in myself and that I could work it all out.

This is one of the few distinct event memories that I have of that first year after my diagnosis.  The rest is a blur of pain and helplessness, of anger and grief for a life that I thought I had lost.  It seemed never ending as time drew past the twelve month mark where 'for most JRA kids it burns itself out' and it didn't.  I could walk again but the pain was still there.  I still needed medication.  I knew that there would be a lot of things that I might never do again or be able to do for the first time.

Somewhere along the way I realised that there were still a lot of things that I could do.  I found things that I enjoyed, found ways to cope and found ways to live.  It wasn't always easy and I still have days where I think that life isn't fair where I wonder why I was given this faulty body to work with.  I still don't like to talk much about when I got JRA except in the fluff pieces where I exclaim that it had made be a stronger, better and wiser version of myself.  It's easier that way.  Easier to put it behind me and take each new day as it comes.

Some days the pain is still there and I've had to fix a few joints on the way but I've done OK.  I've done a lot of things that I never thought I'd do.  I survived my JRA childhood and became the regular kind of troubled teen.  Ok, I needed to make some adjustments and compensations along the way but I managed.  I had fun.
I went to uni and rebelled.
I worked and learnt to support myself and take care of me.
I've had good jobs and bad jobs and still don't know what I want to be when I grow up and that's ok! (If you're a teen - I'm OLD.  34 this year!)
I went to Las Vegas and partied like a rockstar.  I went to London and saw a play.  I went to Thailand and relaxed. I travelled when I thought I never would.
I've had good friends and just for time friends who I've lived it up with, who I've shared life's ups and downs with.  Some know and some don't.
I've been accepted by others.
I've been accepted by me.
I'm married to someone who loves me, who accepts that my body is a little bit broken and still accepts me anyway.  He accepts me for who I am and not just the shell that I want the world to see.
We own a house and are all grown up, making our own choices for our lives.
One day I'll have kids of my own and though I've got a good life, I hope and pray that they won't need to take this road because I wouldn't wish it on them.  Just as I don't wish it on you.  If there were a magic wand, I would take it away from you because I know.

There is still lots of life to live and though I might not be jumping back in the mosh pit anytime soon, life is good.

So on your darkest days, where no one understands you and you question why you were punished with this horrible disease, please know that even if you don't think that camp full of kids understands, there are more people like us who do understand and have been through this and had great lives.  It is horrible and it is hard to talk about.  It might not go away but you will be ok.

This is your life and JRA is a part of it.  Just a little part.  It isn't who you are.  You are in charge of making the best life you can for you.  That life you create can be great!

Six Week Surgical Review

I went to visit the surgeon on Monday for my six week post-op review. I was a little nervous the night before and while driving back into the hospital. Realistically, I know I've done well and my progress has been steady, so there was no real reason to be nervous. I'm not quite sure what started up the butterflies but they were quickly squashed.

On the way in, we were a little early and managed to get a 15 minute parking spot just in front of the coffee shop so the day was starting off well.

When we arrived in the surgeon's office, we were sent upstairs for new x-rays. Q-Scan uses the new digital machines so I have a nice little CD with the three views showing the perfect placement of my two BMHRs. I had to download a view for the Mac (it came with a windows viewer - the one I downloaded is free and pretty cool. It's a DICOM viewer called Osirix) and now when I have a few minutes I will be able to upload some clearer images. It still amazes me that they are in there. The joints don't feel anything but natural. I guess after so many years of crunching and ROM limitations my idea of normal is a joint with smooth, fluid movement. I know that my limiting factors at the moment as far as mobility goes are to do with muscle strength and tightness not the actual joints themselves.

We headed back to the surgeon's office and saw him pretty quickly. He's pretty happy with my progress and gave me the all clear to lift the hip restrictions. We had a quick chat about my progress, the improvement of the left side foot drop (all better now) and other bits and pieces. The Four Corners piece was raised, which I commented that I hadn't seen though I had heard that it was quite biased and that kind of led into a general conversation about acetabular cup placement (mine is perfect, having an awesome experienced surgeon is crucial), the number of resurfacings he has done (700+) and the success he has had with the BHR (The BMHR is still new though the data is much like the BHR's early data and is promising).

I asked about metal testing and pregnancy for when we get to that point in a couple of years. I was asked if I would supply test results when we go down that path and I said I would happily volunteer results for data for a study on the MOM devices.

[Side Note: I really believe that they are the best option for a lot of people, not just people like me. Some articles still suggest the MOM devices are not suitable for women of child bearing age as there is some evidence that the metal-ions pass through the blood barrier, however, there is no evidence that it will cause any problems. This may get a lot of negative comments and I challenge the naysayers to find hard data before name calling. I am open to an open dialogue of the issue, however, comments with rude remarks will not be accepted. I trust my surgeon and the data that he has researched as an expert in this field. The research I have done supports my belief in him. The decision to have the procedure was not one made without great consideration of a lot of factors. I will eventually write more on the topic of making this decision, so at some point the label 'Decision' will have more posts. Just like this part of our lives, we will do due diligence to any big decisions that we make. Anyway, back to the topic at hand.]

I enjoyed the appointment. I think I'm an interesting topic to talk about! Actually it's the shiny new hips that are interesting as well as the progress that's been made and will be made and all things relating to the new parts that the surgeon knows that I don't. The summary of the appointment is that all is good and I am due for review again in September.

In the meantime, HIP RESTRICTIONS ARE LIFTED! Not that I can really exceed 90 degree hip flexion, but that isn't the point. The point is that the risk of dislocation has reduced and I have passed that first hurdle. (There are other things that I don't have to be as concerned about either - though the seat height is probably the one that functionally is the most difficult to deal with.) It's nice to be able to be able to stretch a bit more, to reach down to at least try and touch my toes - still a few inches off and my hamstrings are squealing! They need a lot of stretching out just like pretty much everything else. I can't reach as far as I could pre-op yet, though it has been almost seven weeks since I've done that stretch so I guess it isn't too surprising that it isn't the easiest thing to do.

So the plan for the coming week is as much stretching as possible and keep on top of the exercises. I have a little bit of work to do tomorrow so I'm going to have to figure that into my day as well to make sure everything gets done. I feel like I should be doing more by now but I am still tiring easily. It's getting better as each day passes though there is still a little way to go yet.

With that in mind, I really need some sleep. It's way past the bed time I have gotten used to. Even though I've always loved sleep, I need even more these days. I guess that's an indicator that my body is still investing a lot of energy into the healing process.

Til next time!

Coffee Break and The Week in Review

Last night my husband got home from being away for a few days for work.   No matter how much he wanted to be at home, there is work to be done that cannot be delayed forever no matter the desire to do so. The deciding factor was more to do with how I was going and whether I could confidently do what I needed to do on a day to day basis.

I am pretty self sufficient now with the only thing that I really need help with being getting the compression socks on for day and TEDs for night.  These special socks are knee high and not the nicest things to get on and off.  They are used as a blood clot preventative recommended by the rehab doctor for at least six weeks post-op until my mobility increases and is a little closer to normal.  There are differing opinions as to the duration required, the time that it will take for mobility to return to normal and what activity level will prevent the development of clots.  The time frame recommended is at least the six weeks while I am on the clexane injections (aka lovenox, a blood thinner, daily self-administered injections).  My GP suggests that after the six weeks are up that this is a decision that I need to make based on how mobile I think I am as to whether I continue wearing them.  At this stage, it really doesn't hurt to be cautious, though a little time off from them each day since that the clexane finishes today will be most welcome.

I had some awesome sock helpers come and stay through the week to help me out with this and keep me company through the week.  Special thanks for the help and the company!  Even though I know I would be fine home alone, it is nice to have someone around to chat to (and overdose on chocolate or apple crumble with as it really is no fun to moan to yourself that you ate too much and can't move!)

Physio this week was great and there were increases to the measurements that we made for the range of movements last week.  I'm expecting another change when we measure again next week.  Amazingly it is the hip flexion that is lacking over abduction.  The reason I find this a little odd is that it was very much the reverse pre-op and I had really expected them to return and strengthen in the reverse order.  Hip flexion equates to more of my functional goals at the moment.  Stairs without compensation vaulting being the big one.  Once the hip precautions are removed, it will be an important part of building the strength to drive again as well.   The exercises to strengthen these muscles are becoming more manageable since I have been able to start leg lifts using my own strength.

Today was a big sleep in day.  It was awesome to have no where to be and nothing to prepare for this morning.  Coupled with a late night last night chatting with my husband and a big week, the extra sleep was welcome.  I can sleep on either side now quite comfortably so even though I wake to move, I am able to move into different sleeping positions safely (ie not breaking hip precautions) and getting a reasonably good sleep each night.

After a lazy start, we headed out to have coffee with friends of ours.  This time when we arrived, I used the stairs and not the elevator.  I wouldn't have contemplated that week.  I'm not sure if the stairs weren't even and smaller than normal but I was able to step up without compensation on just over half of them.  When I arrived at the top of the stairs, I walked the long way around to the front of the restaurant and arrived at the same time as our friends.

This afternoon has been rest, catching up on email and reading some of the blogs that I frequent.  The feet on the recliner are up, the tv is on in the background and as I think of it, there are foot pumps or muscle contractions or little leg lifts, just something to keep moving while I kick back.

Second Week at Home: The New Routine and Progress

Life is getting into a routine at home with regular exercise, walking laps around the house, regular good food and restful sleep.  I am ambling around on crutches with significantly more confidence.  The next walking goals are to increase the distance that I am regularly walking and get down to one crutch around the week of my surgical review.  Review is next Monday and I am moving towards having enough strength in my hip stabilisors to achieve this later in the week.  It's likely that my right side will be the stronger one as it has been throughout this process. There is still work to do and a lot can be achieved in a week, so I am hopeful.

The major change that I have seen physically in the last couple of days is the ability to lift each leg up from the bed into the air while laying down.  So far it's only about six inches from the bed though it is a good start and a massive difference as I haven't had the strength in my hip flexors to lift much more than half an inch until Monday of this week.

The other functional goals that we have as part of the first phase of Project Awesome are to increase the amount of stairs that I practice daily and to eliminate compensation vaulting on stairs.  The compensation occurs as I don't have the hip flexor strength to easily lift my leading leg to place it on the upper stair and have been compensating by lifting the heel of the grounded foot to gain the additional height to clear the step.  Though I have the strength and balance to do this reasonably safely, it isn't the best way to climb stairs.  I have to practice lifting each leg higher while activating all of the required muscles.  It requires concentration and a huge amount of energy to clear each step when leading with the right.  The left is still about an inch off and I am still practicing as I don't want the progress to stop on the weaker leg.

I also need to increase the amount of outings that I do each week to improve my confidence and stamina.  I am still wary of being out in public and the only way that will change is by getting out there.  I need a bit more practice so that I am soon at the point where I am comfortable going to the pool and starting hydro.  I'm probably still a few more weeks off that.