Monday, March 28, 2011

Reactive Thoughts

Well it has been exactly a month since I was admitted to hospital for Reactive Arthritis... my left foot is particularly whingy tonight to celebrate the anniversary of the commencement of my treatment.

I went back to work last Tuesday - my GP offered me more time at home, but I was pretty keen to make a start back even if it was only for 4 or 5 hours each day. I'm not sure if I've mentioned this but the condition, due to inflammation, has also sent me mildly aenemic. Anyhoo, so far so good with going back to work - though all the things you might expect, did happen. I found the drive a chore, particularly the home trip. Pain levels especially in my feet were up and I felt pretty much knackered by the time I got home - I'm glad it went as expected - I don't like surprises :)

The condition is improving, I know this because my Prednisone dose continues to reduce and my pain levels are generally manageable with low level doses of analgesics - that would not have been the case 2 weeks ago - ergo I must be improving. The condition is improving, I know this because.... The condition is improving.....

I've got to stop reading stuff on the net - the more I read, the more instances I find where this thing goes longer than the text books generally suggest. My specialist claims that 95% of people make a full recovery within 12 months and this is supported by many sources on the net with relapse figures for a 2nd helping at some point thereafter ranging between 20% to 50% of cases. These are odds that I can work with - they give hope!

Unfortunately a recently published longitudinal study by the US Defense Force of 251 patients between 1997 & 2009 showed that 38% of males were still receiving treatment for active symptoms after 2 years and in my age demographic this rose to a scary 59%. In another study of Canadian Police (in 1984, 432 Police suffered Gastro as a result of food poisoning - same antecedent as me - during a Papal visit, 27 ended up with Reactive Arthritis) 66% were still being treated for recurring symptomology 5 years later! The 2 studies are not inconsistent when you look at the gender & age. These odds offer less hope!

As someone who was an active athlete and part-time adventure sportsperson from the time I was 10 till I was 44 years old I'm no stranger to feeling sore and/or recovering from injury. The kinds of mobility restrictions and the levels of pain that I am currently experiencing, are really no different now to what I've lived with on & off throughout my life. The big difference is that I've never needed such massive doses of NSAIDs (still 1g per day - makes 25mg Voltaren Rapids look a bit lame), with Cortisone (down to 10mg Prednisone per day) & Sulphur (up to 2g per day of Sulfasalazine) and still needed to take the odd Panadeine Forte or Endone to cope. I'm also used to seeing rapid improvement and knowing with relative certainty that the discomfort is temporary. Though I know I am improving, it is much slower than recovery from an injury and the everydayness of it does get a little wearing.

I haven't been going for any walks since I started back at work due to tiredness - but I did get up to 1,200m in around 30 minutes the weekend before last and I'm hoping to reintroduce a walk by this weekend - just have to suck it and see.....

On the upside, I'm finding I can play guitar for around 30 minutes without too much discomfort - though only melody lines and open chords. It hurts my left thumb too much to play barre chords or do bends, but at least I can noodle around - frustrating that I can't do a lot of what I could, but pleasing that I can caress timber and strings once more. I guess I just have to take it one day at a time - I mean Daniel Johns (Silverchair) and Mark St. John (Kiss) both made pretty good recoveries from RA, so I just need to keep channeling guitar playing recovery vibes :)

The condition is improving, I know this because........

Wednesday, March 16, 2011

Better Than I Thought

Turns out I was short-changing myself - took Garmy with me and that 400m is actually 800m, so I'm going twice as far and twice as fast than I first thought!

Today's trip was 20.31 - a minute slower than yesterday, but a couple of minutes quicker than the day before. But hey, I'm out and about and mobile, so I'll take it.

Pretty much off the Oxycontin now - though I took 5mg around midday as I had another funeral to attend this afternoon - no one close, but since I'm off work anyway, it was no chore to go and provide some support to a dear family friend who lost their Mum earlier in the week.

The fun starts tomorrow as I begin to wean the Prednisone. At current levels the pain is manageable with a Panadeine Forte every now and then - I'm just hoping it will remain so as the Prednisone comes down - it is a pretty gentle plan with 3 weeks to run from now till I'm down to zero. During the same period the Sulfasalazine goes up ultimately to 1g morning and another 1g night and the 1g of Naproxyn stays constant - so if some of you will please cross your fingers for me (I still can't for myself) it should all be Jake!

Plan is still to return to work 21/3 for at least a few hours per day.

All good :)

Saturday, March 12, 2011

Out and About

Took the walking frame for a spin around the block today - about 400m all up. It went ok albeit slow and I was pretty glad to get home. There is a bit of indignity associated with using the frame but I was really keen to get outside for a while and get moving. Now that I'm out of hospital there are thankfully no more Heparin x 2 injections per day so going for a walk is my best defense against clots forming.

I also started weaning off the narcs and have only had one Panadeine Forte today (of course I'm still using the Oxycontin). I'd be lying if I said I couldn't notice any difference, but the truth is bits I haven't felt for days feel sore again, but it is all manageable and my head is a little clearer as a consequence. Just have to see how I go tonight.

In other news, Mrs 2P was rushed off to hospital yesterday morning - believe that? She is home now and the medicos suspect kidney stones - she is on Maxalon for the vomiting and nausea and we are officially now a "Double Endone" family as that's what she is on for the pain. She has rested quietly most of today and anyone who knows Mrs 2P would understand just how sick she must be, because the last time I saw her lie down during the day was after a major surgery about 10 years ago!

It's been a funny old few weeks that's for sure.

All good :)

Thursday, March 10, 2011

Home James

Well I arrived home from hospital yesterday after 10 days of one the most interesting periods of my life. Made it to 47 without ever being admitted to a hospital and it will be just fine with me if it takes another 47 for the next one!

I have some thoughts on the whole experience and I may post them - I've already shared them with a few close friends but this thing ain't over yet so I might hold on to them in case they should come back and bite me.

So where am I up to.....

Not a lot has changed since my last update - other than things got a bit worse before they started to get better again which resulted in some final tinkering of the cocktail of drugs I'm on (10 in total) to manage this thing. The drugs fall into 3 categories: 1. Things that reduce the inflammation; 2. Things that reduce the pain; 3. Things that deal with the side effects of 1 & 2.

The prognosis is that full recovery is looking like about a 9 to 12 month process. Functionally each day is better and I'm planning to return to work (at least part time) on 21March which whilst the doctors suggest is mildly optimistic it is not unrealistic. The main hurdle is to wean off the cortisone and the narcotic painkillers and be able to cope with the symptoms that will be with me for a long time yet.

In terms of keeping a record - dosages of the main drugs immediately prior to discharge were:

Prednisone 15mg morning, 5mg night (plan to decrease)
Naproxyn 1gram night (plan to decrease)
Sulfasalazine 500gms night (plan to increase)
Oxycontin 15mg morning, 15mg night (plan to decrease)
Panadeine Forte 4 x 2 daily (plan to decrease)
Endone up to 20mg per day taken as required
Temazapem 10mg night taken as required

I've already knocked 5mg per morning & night off the Oxycontin and have increased Sulfasalazine to 500mg morning & night. For the record I haven't taken any Endone since discharge.

In terms of pain, on a 1 to 10 scale the above cocktail results in a 2 to 3 lying perfectly still in a comfortable position. 3 to 5 moving carefully around and spikes to 7/8 if I do dumb shit. With luck I can maintain that as I wean - if I can't it will mean longer off work as I can't function properly in my job or indeed drive till I'm off the narcotic painkillers.

I've have had to abandon any thoughts of doing Hellgate in April, but hopefully I can still turn up in a support role. The other real bugger is it will be sometime before I can play guitar again which has left an enormous hole in my life.

It might not be all good, but it is better :)

Monday, March 07, 2011

A Tribute To Mum

They gave me a "gate pass" from hospital today so I could attend Mum's funeral. I delivered the following eulogy.

On behalf of Lynne & Grahame, I would like to start by thanking you all for coming today, so that collectively we can celebrate the life of this remarkable woman, our Mum.

Lynne, Grahame and I would also like to thank some people for their help towards the last years of Mums life - Robyn & Graham - Mums Neighbours who were always willing to help out, Rex and Val provided much support before and particularly since Dad's death, and Barry, Sandra & Adam who cared so lovingly for Mum in their own home when it became clear she could no longer live alone.

You may not know this, but Mum was actually born a city slicker! Life started out for Mum in around the Kensington & Canterbury areas - before moving with her Mum & Dad at age 5 to Heath Road at Leppington - an area vastly different then to the Leppington you see today - but a Leppington that would shape the very fundamental core of what and who Mum would become.

Part of this shaping was the life-long relationships that she formed. From her precious "Leppington Girls" from Raby Public School to all the others she met along the way. The circle just grew and grew and when she met Dad that brought in the Cobbity and Camden crowd as well. 

It was also an environment without running water, electricity, shopping malls, or for that matter even a corner shop - where needing to go with your Mum & Sister to the clinic in Liverpool meant hooking up the horse and sulky. This environment prepared Mum for dealing with life in a way that many of us here today could never hope to understand.

In short, it was a world where you just had to get on with things.

One example of how Mum herself learned to get on with things, was that from the time she was 12, she rode her push bike three and a half kilometers to the bus stop. From there she got on the bus and took a 45 minute trip to the nearest train station. She then caught an old red-rattler for 40 minutes and then after a walk, she would finally arrive at her destination, the nearest high school to where she lived, Homebush Girls High School. In the depths of winter it would  have been dark when she left in the morning and it would have been dark when she got home. Remember this was from when she was just 12!

If that wasn't tough enough, she then had to do an even longer trip, when she landed her dream job at the Sydney Conservatorium of Music near the Sydney Botanical Gardens, as secretary to Sir Eugene Goosens. It was during this time that Mum formed her lifelong passion for music - stories of the Con were very much a part of growing up around Mum and I well remember her proudly showing me one of her most treasured possessions - a telegram of congratulations from Sir Eugene on the birth of her new daughter Lynne.

The Con wasn't Mum's only job with people who went on to become household names - indeed Mums very first job after leaving school was to work directly for Albert Teagle, the founder of Teagles Turkeys.

Many of you here today heard me speak some four and a half years ago about Mum & Dads life together - about their various moves to Aberdeen to run a farm, to Camden to run a dairy, and to then take a real punt and along with Mums brother Barry, start up their own transport business.

Through all of these moves and changes in direction, Mum just got on with things. In the business, Mums main job was as Bookkeeper - it might have been at home, but she was still very much a working Mum. The only way to fit it all in was to start at 4:00AM and using a manual adding machine and a clunky old Corona typewriter she would do the accounts and invoicing on the kitchen table. While other kids were planning to buy their Mums some perfume or flowers for Mothers Day - we conspired to get our Mum a new-fangled (but far more importantly - silent) Sharp Elsi Mate electronic calculator - so at last, we at least, could finally get a sleep in!

Mum loved it - as indeed she loved it whenever any piece of new technology came along - from cassette players to CD's, from VHS to DVD's, to microwave ovens, computers, the Internet and email - you see to Mum, they were all tools to be embraced that enabled her to get on with things.

When Dad died in 2006, we all wondered how Mum would cope - after all - they had been soul mates for well over half a century. Everyone here knows just how special their relationship was. How did Mum cope? Well she got on with things - from 75 years of age plus, she drove the old manual gear shift Ford Telstar that was also without power steering and joined not one, but two Senior Citizens clubs, she drove herself out to Austral to play Bingo every week. Took herself out to the shops and went on whatever trips through the Senior Citz clubs were available. She also embraced computer games and email on the laptop she bought. 

Of course she was desperately lonely and missing Dad, but she just made the most out of what was now her new reality.

In January last year Mum had a small stroke and it became clear that she would no longer be able to drive and her capacity to look after herself at home was also diminished. As her kids, we again wondered how she was going to cope? Without complaint, she got on with things and she started to get linked into community transport and the other aged care support available to her and carried on with as much of her old life as she could, gracefully surrendering the things she had to let go.

Due to another hospitalization last September, Mum could no longer live at home alone and her only way to get on with things now was to move in with Barry, Sandra & Adam until another option could be arranged - the need for supplemented oxygen at least 18 hours a day was no problem, Mum just got on with it by purchasing the latest portable machine, which meant she wouldn't be reliant on bottled oxygen and could retain some of her mobility and independence.

In December Mum had a catastrophic incident whilst in Liverpool Hospital where she literally died - the wonderful medical staff there brought her back and we were all blessed to get her for yet another few months. When Mum came out of the hospital this time she moved into Aminya Retirement Village at Baulkham Hills - yet another new reality that she just accepted and got on with. 

Though life was now very different, Mum remained very much in control - she had us arrange the sale of the house she had lived in for 48 years, in the process abandoning almost all of her earthly possessions - she did this with a dignity and self possession that had to be witnessed to be believed. I know she also took this time to heal some old wounds and to make sure she made all of her final wishes known. Once again there were no complaints and certainly no regrets.

During this time she made the most of every minute. Any offer for an outing - no matter what it was, was willingly accepted. No phone call could be too short or too long. If there was an activity to do, she was in it. Without ever feeling sorry for herself, if there was a way to really live just one more bit of life - she would be in it!

Accepting the situations that life threw at her and adapting what was needed to overcome them, would never have been a conscious motto of Mum's - but I think you will agree with me that it serves as a fitting epitaph.

Thanks for the lessons Mum and thanks for the love.

Friday, March 04, 2011


Still in hospital - good news & not so fantastic but i need to just deal with it news.

Good news

Just today they have managed to hit on the secret formula that can consistently manage my pain - so instead of having to take the maximum doses of Panadeine Forte, seriously high doses of Endone (morphine equivalent tablet) and the occasional injection of Morphine - I'm just back to Panadeine Forte and the occasional Endone. They've managed this with a mix of cortisone (Prednisone), anti-inflammatories (Naproxen) and an unusual drug called Sulfasalazine.

Bad news

The medicos don't particularly like the cocktail because of the associated risks they each have are exacerbated by mixing them, but as all of their previous experiments have agonisingly (for me) failed. My symptoms have left them nowhere else to go. Also, the symptoms are presenting in new areas and old areas that have abated have flared again - indicating that I have a version of this thing that is going to be a longer-term proposition to deal with and they are keeping me in hospital till probably next Wednesday or until it stops turning up in new places and reigniting in areas that have previously died down.

They are also subtly managing my expectations now (which I appreciate) from the optimism they first showed (and I shared) to start to get my head around the fact that this might go on for some time, both now and as an outpatient into the future.

The rest

For anyone interested - you have to have the HLA-B27 that roughly 8% of the general population have and a precipitating bacterial infection - in my case Gastro - if you want a good horror story - google Reactive Arthritis. Also whilst I thought I'd never heard of it before - I've been reminded that it is the thing that Daniel Johns from Silverchair got in 2002. Must confess I was skeptical at the time but now have sent him silent apology vibes.

Mum's funeral is on Monday but they are going to give me day release to go.

Here is hoping the symptoms now come under control.

All good :)

Wednesday, March 02, 2011

Farewell Ma - You Played Hard, Ya Done Good

Yep - got a call in the hospital this morning to say Mum had passed away.

Not totally unexpected because she has been slowly deteriorating for quite some time - but it still comes as a shock when it happens.

Apart from the smoking - Mum was a model on how to live your life. She faced every new challenge, every set back and every good fortune with the same pragmatic "get on with it attitude" that I could only ever aspire to.

Mum & Dad were soul mates and we were all amazed at how Mum just got on with things when he died. When she lost her mobility, she just got on with it, when she had to sell the house she had lived in for 48 years, she just got on with it. Accept the situation, overcome and adapt may not have been her conscious motto but it may well be her epitaph.

We'll miss ya Ma - see you when the weather breaks :) xo