Pain Relief

I put up with the pain for over a day before I realised that I could take some pain relief.  I took an ibruprofen before bed and it seemed to help enough that I got to sleep and slept well.  I don't know why I didn't consider pain relief as an option.  The pain that I had wasn't one that I was used to or can ever recall having.  It wasn't that sharp pain that I was used to but it was still able to stop me from doing things - like full weight bearing.  It wasn't as bad as the old pain, even though it did hurt a fair bit, I'd describe it more as irritating and limiting than bad pain.   It was irritating enough that I wasn't able to get comfortable enough to sleep on Friday night and I woke on Saturday morning feeling pretty rough.  As the day progressed, things were a little better but by the end of the day I was pretty much back where I started.  

As I contemplated doing this all over again today, I was a little upset that I had taken what seemed like two big jumps backwards when I had been doing so well.  Now that it's been so long, I don't get much feedback to help me determine the improvements that I don't see for myself either, so the little that I do see seemed to be stripped away which is ridiculous since it was solved with nothing more than a single ibruprofen.  I'm someone that has dealt with far more pain than this for a very long time and yet this little episode threw me for quite a while.  It was just a bit of a reminder of what was and how uncertain the future is.  It's representative of change that I don't quite understand and don't quite know how to deal with yet.  I'll get there in my own time and until I get there people are just going to have to wait.

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.

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!!

Spilled Milk

There is no use crying over it, right?

Even if there is coffee in the milk?

Probably not.

But that's where I was at this morning when I managed just that when I arrived at Physio today (all over towels and pillows....  sorry!)

Now, it was good coffee, but probably not quite good enough for a cry, it wasn't like the last cup of coffee that I would ever drink again and it really wasn't the problem.  The day just didn't start off well.  I woke up tired and sore having not been able to sleep that well.  Panadol Osteo really doesn't cut it to replace the anti-inflamatories that I was on until last Friday.   This is probably the longest I've ever gone without something stronger and sleep is hard to come by at the moment.  I think that naps may be in order when I feel that I might actually be able to sleep for a little while.  There were a few other little things that managed to fray the nerves before I actually got to the point where the coffee was a really big issue but even so, really not a proportionate emotional response.  It's probably just as well I was somewhere where people know me well, as it really was quite an episode, one that I really wouldn't want to have out in the real public.

The day turned around and I got over the weepies and felt a lot better after an hour of Physio and another cup of coffee.

I caught up with an old friend for that second cup of coffee and got a chance for a bit of a sit down and breather to keep the physio calm and relaxed mood going on.  The pain subsided for a bit and I got a chance to get stuck into the last few work tasks so that I can handover to the person taking over.  I pushed through til about 10:30 tonight to get everything done so I won't have to work again before the op.  I finished up about the time that my husband arrived back home after being away for a while.  He wasn't definitely coming home today as he was still in exile but after my little episode this morning.  

I need nap time and relax time now that my husband is home and we are this close to game day.

Last day for arthritis meds

Today is the last day that I am allowed to take my arthritis meds.  At the moment I am just on the anti-inflammatories, Voltaren (Diclofenac).  I have been on these for over twenty years now.  Throughout that period I have been prescribed other drugs in addition to, or to try instead.  When I've tried other things, there hasn't been any great success and management has primarily been with the Voltaren and Prednisone.  I don't recall everything that I was trialled on when I was a child as other things didn't last very long (I'll go through what I can remember another time).  

Side Note:  Over the last decade, I've never really needed anything other than the Voltaren.  Disease modifying drugs aren't suitable for me, the pain comes from the damage that was caused in the early days and a slow degradation as the bone grinds on the bone and the associated inflammation caused by this.  (My CRP and ESR are on the high limit of normal - which are one of the diagnostic tools used to indicate that it is still something alot more than that.  In the old days - there was no such thing as single digits - I really should try to get a hold of my children's hospital records to document all of that).  Though I have damage in other joints (fingers, ankles, knees, tmj and probably shoulders and elbows but they haven't been xray'd so I don't really know), none of the rest of them really give me too much difficulty.  There are range limitations, though no pain.

Back on track:  The reason that anti-inflammatories need to be stopped a week out is that they can act as a blood thinner and result in excessive bleeding (which is something that you definitely don't want during surgery.)  I am allowed to take Panadol Osteo which is going to be *fun*.  I've tried this before when I had a minor procedure last September, and it was only three days then and that really was enough for me.  So it's not likely to be a fun week but it should see the end of needing meds to manage pain (well once the surgical pain heals).

Seven sleeps to go.

Shopping and planning for the week I am admitted....

I spent some time on the weekend looking for the extra bits and pieces that I might need to take into the hospital with me.  Where I'm not sure, I have erred on the side of caution and purchased a couple of options :)  I might have mentioned that my pre-op appointment is on the Monday of the week that I am admitted (I go in on the Friday), so I won't be left with a lot of time to do that much in the last week.  The main question I have is when will I get to wear 'normal' clothes again after surgery?  From some of reading that I have found that the answer varies so, I guess it does vary from person to person based on the incision type and how long drainage tubes are in and generally how fast I heal.  I have selected loosely fitting pants and shirts (not unlike what I wear to pilates now) and dresses that aren't too 'hospital' or 'old lady' looking.   I've elected for soft fabrics that feel good and still breathe.  I've also found myself a pair of flat slip on type shoes with good soles and reasonable foot support so that when I can't bend, I can still have some sense of independence should I want it :)

So far for the last week, I have two physio sessions planned, maybe one pilates and one hydro session as well.  I will be finishing up my medication on the weekend before so the last two will depend on my overall wellbeing given that I haven't been off the anti-inflammatories for that long for quite some time.  I am currently taking Voltaren (aka Diclofenac Sodium) 50mg twice daily and will need to stop that in the week before.  I will be allowed to take Panadol Osteo and Panadeine Extra which hasn't been as effective when trialled in the past.  It's only a week, and I will be fine, though I want to be careful not to set anything off in that week before going in.  I have been working closely with my physios and know that they will make sure that I am in the best physical condition that I am physically capable of being in, so it's left to me to follow their expert advice in that field and focus on other aspects, like eating well and maintaining a positive attitude.

In between the physio and exercise, I have the non-critical tasks like getting my hair cut and coloured and getting my eyebrows waxed and any last minute shopping things that need to be done :)  I figure that if I'm not feeling 100% when I first wake up from the surgery, I probably won't want to look in the mirror and see regrowth :)  Though this may seem to be the least of my problems, I think that everything that I can do to go in feeling positive and good about myself, will help on the other end, even if it is as cosmetic as getting my hair done.

JRA Children's Fiction

I came across a reference to a fiction book by popular Australian author Colin Thiele (anyone remember Storm Boy from school??) on one of the Australian Arthritis support websites.  I can't remember what the website was, though I was prompted to find a copy of the book somewhere.  It is called Jodie's Journey and it looks to be out of print.  I found it at a second hand online bookstore called Brotherhood Books but it looks like I got the last copy.  There is still a couple of copies over at Amazon: JODIE'S JOURNEY (McVitty Signature Paperbacks) though one is a little pricey.  If anyone is keen to read it, send me a message, I'd be happy to send it on.

It's what I'd call a short story or maybe even a novella (112 pages) and was actually a little difficult for me to read.  I'm not sure how much of the treatment would have changed since 1988 when the book was written with the introduction of the newer biological DMARD's perhaps now used in preference to older ones such as gold injections, and maybe now as a first choice.  That aside it is a reasonable account of diagnosis and day to day difficulties even though it is somewhat condensed.  This is most likely due to the target audience.

The reason that it was a hard read for me was how much I related to within the story.  I never saved the day or had an affinity for horses, though the a lot of the rest was a little close to the truth for me to be comfortable with.  There were also a couple of major differences in how the main character Jodie deals with her condition and how I felt in the same situation.  I'm not sure this is enough to question the authenticity of the character as every journey is different, however, I do wonder if this is a reflection of an adult's perception of a similar situation or maybe just my own childhood affecting my perception of the situation.    I'll get to the examples shortly.  All in all, it's not a bad read though I don't know that I'd necessarily recommend it to a kid going through this now.   The story was written after Colin received a letter from a fan of his work asking him to write a story about a girl with arthritis as her friends didn't understand what she was going through and she thought Colin would having suffered with RA for many years, spending much of his hospital time writing his other books.

In the beginning of the story, you need to know that 'tinny' means lucky.  Apparently this is Australian slang that I wasn't even aware of.  I gathered it from the context of the sentences - though it was weird enough that I remembered enough to comment.  The rest of the language is probably at about a fourth grade level.

I have a couple of comments to make about how I relate or didn't relate to the story and will expand further at a later date as this few years of my life actually needs more than a single post to share.

• Like Jodie, I'm not sure what was more difficult, the pre-diagnosis period where you are criticised as putting it on or making something more of it than it actually is or the difficulty of the realisation that 'you can't' do something that you could before, or that you perceive is something that normal people can do.

• An interesting point was made about the cost of alternative treatments like acupuncture.  This wasn't something that was suggested to me in those days, though I do relate to the sentiment.  The best treatment isn't always one that is available to the masses.  An example is the physio treatment that I receive now and have been for almost a decade.  It has made an enormous difference to my quality of life and I would certainly recommend to anyone and it upsets me that the quality of care and types of care available to people is directly proportionate to what they are able to afford.  How could I condemn someone to the last decade of my life without that treatment?   (This rant will be continued in another post)

• As an extension to this and back to some of the points made in the story, the whole part about getting a wheelchair wasn't as easy as all that in real life either.  I was unable to walk unassisted for quite some time and medicare didn't cover this - especially not an electric one...  I was a year later in '89 so not too much would have changed.  This was something that we had to jump through hoops for and I eventually did get one which replaced the second hand one that my parents had purchased.  It didn't allow for too much more freedom though as I still needed to be pushed (like a baby really) and didn't obtain the independence that I desperately craved at twelve.

• Explaining to strangers is always difficult.  I think it was easier not to get into it really. 

• The big differences relate to how Jodie reacts to the commentary about her condition.  In the beginning our reactions were similar, hurt and a little pissed at being called 'hopalong' or slow and clumsy.  She seems to be ok with the awkwardness and lack of ability to do certain things provided that no-one sees it happen.  I was the reverse, the public image seemed to embolden me.  It's ok to be lazy, or I don't want to do that and disregarding it somewhat haughtily.  In private, sitting there looking at your shoes for example, being unable to do up the laces simply because I couldn't reach them can be a soul destroying moment that isn't too easy to walk away from.  It's easy to get into the spiral where you aren't good enough and  obviously you are completely useless because guess what you can't even do up your own shoes.

• Jodie also seems to get used to the 'hopalong' comment which I never did.  The intent isn't usually malicious, though it always seemed to be making an obvious point about my failing to be able to walk properly.  It stung.  I'd put it on par with someone calling you fat.  It might be true, but it doesn't make it a nice thing to hear.

I'm not claiming to be an expert here on anything other than what happened in my own life and how I perceived it at the time and now.  One thing that is illustrated and so very true is about those difficult people that know everything about you and your condition including:  curing it (why haven't you tried this sooner, seriously), that it isn't that bad a disease (my gran has it and she still walks to bingo and weeds the garden and she's 70, what's your problem), it's an old person's disease (kids don't get arthritis, you are making it up) and just what you should do about it (insert many millions of bizarre remedies here that no one they know has even - several hundred of which I thought what the hell, tried them and they didn't do squat).  It annoys me when the advice comes from the well-meaning (and not so well-meaning but arrogant know-it-alls) clueless dolts who are the self claimed experts.

I value quality information and discussions with those who have it.  I don't like dealing with the preacher types that seem to feel that they know better than I do about what I feel, think and do.  Hell, I might be wrong about the best treatment, or the best anything, but come on, I do know what it actually feels like and how I feel about it!

To be continued...