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....

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!

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...

Still's Disease, JRA, JIA or whatever they want to call it today...

I went looking for some information about the condition I was diagnosed with over two decades ago.  Given that I couldn't find too many personal stories online, I went looking for information in relation to the actual condition to see how common it actually was.  Since I'm not enrolled at uni this semester, my access to journal articles has disappeared and I am reliant on information freely available online, so it may not be entirely timely or accurate.   The name has changed according to Arthritis Foundation in Queensland to JIA (Juvenile Idiopathic Arthritis), basically meaning arthritis of unknown origin.  What it is, is still the same and is an umbrella for a number of different types of juvenile arthritis.  Apparently some of what I have are quite common (JIA affects 1:1000 children according to the Arthritis Foundation), other parts not so much.

According to Arthritis.Org, Systemic Onset JA (otherwise known as Still's Disease) is the least common form of juvenile arthritis.  The Royal Childrens Hospital's Rheumatology department bundles systemic onset with other types that affect less than 10% of cases.  In half the cases diagnosed, symptoms disappear between 1 and 3 years leaving no lasting joint damage.  What isn't really clear is what 'lasting joint damage' you are left with when the year is over and the fevers and the rash disappear and you are in the other 50%.   For me, most of the damage that was done happened in that first year or so has been the cause of most of the ongoing pain.  On both sides, the hips are bone on bone with no joint spacing.  I'm not sure when the protusio occurred - it shows up in 2002 x-rays.  I don't have any before that and I don't remember any further back than that.

The first symptom was intermittent pain in my hips that caused a limp.  The limp changed sides over the first few days and looked a lot like a twelve year old trying to get out of something that she didn't want to do or maybe even 'growing pains'.  Unfortunately that isn't what it was and the fevers, nausea started and more joints were becoming painful, warm and swollen.   I was hospitalised within a fortnight of the first symptoms and remained in hospital for six weeks.  During that time I met one other kid with arthritis.  He was a lot younger than me and had it since he was two or three and I didn't really talk to him that much.  Mostly our mum's chatted and even that was only briefly when they saw each other when we had appointments with physios, doctors, occupational therapists that overlapped.  That was it.  I felt like I was on my own with this.   I will share more about the next twelve months and around the time around the diagnosis.  It won't probably be until after the surgery.

After twelve months, I improved dramatically and flare-ups were reasonably rare.  I was no longer reliant on a wheelchair and could walk reasonable distances.  I was never going to be a runner but there was little I didn't do that I wanted to when I left high school and for the next few years.  At some level, I had convinced myself that I didn't want to do the things that I couldn't.  Things started to turn again and the list of things that I didn't want to do increased.  When I was in group situations, it was easier to say that I was too lazy to participate.  It seems to be more socially acceptable to be lazy, than physically incapable of doing something.  Less questions are asked and no pity offered, so lazy it was.

The pain only occurs when I do too much.  So I became reasonably good at judging what was too much and stopping just shy of that.  I got it wrong sometimes.  I rested, the next day I took it a bit easier.  The list with what I couldn't do was getting longer and recovery time from overdoing it is becoming longer and longer.  The efforts that I have made to try to maintain the range of movement in my hips and maintain my quality of life could probably work for a little while longer, though what I want from my life has changed somewhat too.  If you had asked me a few years ago, I would have told you that there would be no way that I would be looking at surgical options now.  That was always something for down the track.