Holidays...???...

It's been pretty quiet after a fashion, in the last week or so.

When I say 'After a Fashion' I mean that with the School Holidays now in full swing, it's as quiet as one could expect. The girls generally get along quite well, however we have had a few run ins and complaints about one not leaving the other alone.

Last week we had James come to stay for 4 nights. This was nice for all concerned; the girls played board games with 'Uncle James' during the day and I played Resident Evil and drank beer with him after they went to bed... Fun for the whole family!

Yesterday I had my initial Physiotherapy appointment at the Ayr Hospital. This was basically an opportunity for the Physio to gauge the extent of my Myopathy and come up with some exercises to slow it as much as possible. Unfortunately the appointment went longer than it needed to. I had to go through the process of explaining the last two years to the poor woman, as my notes are kept at The Townsville Hospital and she had no clue as to what I had or what sort of treatment I was receiving.

On the subject of The Townsville Hospital and treatments, I received a call yesterday from my friend Rosie who runs Ambulatory Care. She informed me that I was to start another six months of Intragam infusions and that she had one spot open next Wednesday if I would like to take it, other than that it would be mid to late January before I could get in.
Of course I accepted the appointment.

Well, that's about it for the time being I suppose. The girls are getting quite excited about Xmas on Friday, thank goodness all of our preparations are done.

Happy Holidays to all...
Cheers,
Jason.

Goneski...

It's been a pretty big week as weeks go...

On Saturday we went to Townsville to do a little Xmas shopping and help Peter and Laura move into their new home. I'm not sure how much help we actually were, but Kerry and Megan unpacked while I set up the TV, Stereo, etcetera... (Guess you have to be useful for something huh?)

Sunday, Kerry and the kids returned to Home Hill, leaving me to stay with Megan in Townsville as I had hospital appointments during the week and we couldn't see a lot of point in tripping back and forth...

Monday I had a nice quiet day touring the city looking for the few errant presents we had not yet picked up. It's easier to do that without the children present...

Tuesday it was off to the Hospital for an MRI...

Oh my stars and garters...

Had I known what I was truly in for I would never had agreed to it... Medieval torture at it's finest... The first MRI was on the hands, which involved laying flat on your stomach with your arms stretched in front of you and your hands strapped to the table. This procedure took 45 minutes... Shortly after being placed in the tunnel, I noticed that I was having trouble catching my breath (apparently this is quite common due to the pose) so I was put on oxygen for the duration. The other thing I noticed is that once your hands are secured to one place that every where on your body suddenly needs to be scratched... Lovely... Oh and the shoulders really have had enough of that rubbish after about 10 minutes...

The Quads and Thighs weren't quite so bad... It was roughly the same duration, but at least this time you could lay on your BACK!!! Oh and your hands were free to scratch if you wanted...

Note to anyone getting an MRI in the future, take a CD with your favourite music; the machine is quite loud and makes some freaky noises..

Wednesday was another write off... Nothing to do, so that's what I did!

Yesterday was back to the Specialists...

The MRI has revealed that the disease is dormant in my hands, however it is still active in the Quads and Thighs. This is not such a big issue I suppose, we have sort of resigned ourselves to the fact that I will be in a chair in the future. Bloods are remaining stable and the switch to Cyclosporin has not adversely affected my kidneys. Fingers crossed it remains that way... My dosage of Prednisolone is being reduced by 1mg a month in an attempt to see how low of a dosage I can withstand in an attempt to combat the myopathy that is associated with long term use of corticosteroids.

January I will be returning for more tests, mainly Respiratory (hopefully no Respiratory Distress) this time, Chest X Ray, Chest CT, Electronic Muscle Function tests and an Echo Cardiogram...

Phew, it's going to be busy...

Last night Kerry and the girls came to collect me and return me home; not before heading to Jun Japanese for tea though...

I am glad to be back in Home Hill... The weather is so much nicer here; Townsville was a humid 36 during the day when I was there. Today in Home Hill by contrast, has been 30 with a brisk breeze and little to no humidity... I knew there was a reason I chose to live here; not even the Whitsundays matches this for climate...

Oh... I am now officially retired. My now ex supervisor called in today to collect my security pass and ID, so that's it... All over red rover... Goneski...

Hope you are all well,

Cheers,
Jason...

Going... Going...

Kez and I have just returned from Pring (the QRNational Coal depot I am assigned as a driver to).

Things have changed a little since I was there last. There is a new Yard and Crew Superintendent. Greg Dixon replaced the Yard and Crew Supervisor (Greg Cubit) who had been there since I started. He seemed genuinely friendly and happy to see us, even if the occasion was to be a little morose. Apparently he had heard my name around the depot a number of times but really had no idea of what was happening until the letter of retirement came across his desk. He called me on Monday to ask if I was able to attend Pring today.

Along with Greg was Simon Smart, the newly appointed General Manager for Coal North. He approached us immediately and engaged Kerry in conversation. He seems like a genuinely good person and both he and Greg seem like a step in the right direction for the Depot and employee relations. Time will tell though I suppose.

It was an interesting day to say the least... I was presented with my letter of Medical Retirement, signed by the Chief Executive Officer of  QRNational Coal, so I suppose that's almost it. My official finishing date is December 3... I was also given a small book they had made of my (albeit brief) career with QR, including all of my training and qualifications... It was a nice touch...

Speaking with my soon-to-be former co workers at times made me think I was glad to be leaving, however there are complaints to be had in any workforce I imagine (there was in CSR too and they were similar) so it was a day of mixed emotions for me.

Driving out of the Depot for what was to be the last time and watching a fully laden Coal Train traverse the overpass north of Merinda was truly a moving experience and made me realise the attachment and affinity I feel to my chosen profession. I will miss it dearly...

So, we're off to Townsville tomorrow to help friends move... Well, sort of... I will be setting up the AV gear at the new house and doing general supervision; apparently I'm not to help them actually MOVE anything... From there I will be staying at Megan's house until Thursday while Kez and the girls return home. I have a swathe of appointments at the Hospital to get through including MRI's and the like; I'll let you know how it all goes when I get back (if not before)...

Well, have fun everyone...

Cheers,
Jason...

Things... Can only get better...

It's been an interesting week or so...

The previous week was pretty much a non event in terms of any major movement. Kez and I seemed to be bumming around the house from day to day waiting for the mail to arrive or the phone to ring. Of course nothing happened... Days rolled by, we woke in the morning and had breakfast, made lunched for Madison and Charlotte and took them to school; we picked them up in the afternoon and had tea... Yeah, same old, same old...

On Saturday, we loaded up the car and headed down home. My Uncle Trevor came up from Brisbane and we were not missing a chance to catch up with him and his daughter Miranda. For those who are not aware, there is not an awfully large age difference between Trevor and I and Miranda is between Madi and Charli in age...

Anyway, we had a great time catching up and visiting family in Proserpine. Something I can say I haven't had for a while. I tend to try to avoid the town like the plague if I can... It saddens me that nothing there seems to have changed since I left...

Anyway all that aside, we had a good weekend... But as Howard Jones would say, things can only get better...

 Monday our rooster took a legs up... Goodness, but it's quite here. Oh, and the pet shop relieved us of our kittens... Life is as it should be... Quite... Still though, nothing much on the news front...

Tuesday, Non event...

Yesterday, Oh... My... Goodness...

Walked out to meet the postie to finally find my Parking permit had arrived. It will be nice to not have to park down one end of a car park and limp to the door... Suddenly Kez wants to go shopping in Townsville... The kids are pretty excited too, no more looking for a parking spot, there is always plenty of  Disabled parks available... On the downside, they can only use the permit if I'm with them...

Shortly after, we received an email from Rosemary, my QR case worker. It stated that Marcus McAuliffe (the QRNational Coal EGM) had finally signed off on my medical retirement and that we should be getting something in the mail to this effect within the next week... As much as I'm not looking forward to not working any more, I'm still looking forward to this letter in a funny kind of way... I think all that is left now is for me to sign and return the paperwork and we're all done... Why do I have mixed feelings about this???

Which brings us to today... Another nothing day really... Sitting in front of the computer, driving a train simulator, mucking about on Facebook... Yup, more of the same... Probably tomorrow too I suppose...

Anyhoo, until next time...

Cheers,
Jason...

Oh My!!!

Another week goes by and more things break down... (Will this never end)

Madison received her two year reminder from our Optometrist, so I decided that since I couldn't remember the last time I had my eyes tested (it was 2002 so I was informed) that I should get a check-up as well...

Big Mistake...

Due to the progression of the disease and the myopathy, the muscles in my eyes apparently no longer wish to play with one another. My actual prescription hasn't changed much, however to compensate I must now wear glasses full time. Yay (not)... The wonderful additions to my life arrive on Friday.

On the upside, I'm dealing a lot better with the pain now. My dosage of Tramadol has been doubled to 100mg of instant release 3 times a day and I've noticed a few interesting things. Take tonight for example, where I spent 15 minutes watching the paint run down the walls of our rumpus room... According to Kerry, listening to me talk to my mother on the phone is now a must; she seems to think we make about as much sense as each other... Lovely person my wife at times... However on the upside, I don't feel the pain anymore and I'm generally in possession of a much cheerier disposition.


Hope you are all doing well and hope to catch up with you on chat sooner or later.

Cheers,
Jason.

Busy, busy, busy...

Well it's been an interesting few weeks...

Over the last 6 or so weekends we have been flat out. We have had Peter (my old Drivers Assistant from Invicta Mill) and his family come to stay, the Townsville Airshow (which the US Thunderbirds performed at), James come to stay, The Townsville Kite Festival, The Townsville Grrek Fest, The QR Family Fun Day and finally, Dad's birthday at Wilson Beach... Phew...

Interspersed between these have been numerous specialists and GP's visits to get paperwork and checkups performed as well as bloods, etc...

Dang, it's been busy... Never mind, helps to keep ones mind off things...


One thing I have noticed over the last two weeks or so is the increasing weakness and instability in my legs... I am using my cane for the first time since 2007 (as little as possible) and I seem to need to hold on to things more often... Never mind...

I have now started on Cyclosporin again and will be going back for Infliximab infusions every month. I'm not really looking forward to this as Infliximab is quite a "hot" drug and I tend to have reactions while having the treatment, but if it's going to slow down the progression, then I guess anything will do...

We're still waiting on work to release me; at this point I'm still off on sick leave.

I have handed in the report from my doctors authorizing a disabled parking permit and also for the Disability Pension, but we are waiting on the outcome. Apparently the pension can take a few months, so we won't be holding our breaths for that one...

Well, another busy week ahead with James coming down again tomorrow... He is spending most of his major free time here now, entertaining myself and the girls... It's nice to have my best friend since school take such an interest in spending time...

Well, I'd best go now as the Laptop is about to die...

Cheers and best wishes,
Jason...

It's Final (kind of)...

Howdy...

After discussions with my specialist and work and others, we have finally reached DDay.

I was contacted on Wednesday, telling me that a letter would be available to be collected from the clinics in Townsville today. Not bad timing as I had to return James home anyway...

Kez decided it was her duty to accompany me on the trip for some reason...

Well, I now have the death sentence in my hands. The specialist has said on paper that I will never be able to rejoin the workforce in any capacity. It is an interesting (and slightly depressing) read in that I don't think some of what was written was ever spoken out loud before... At least not in my presence....

With a VERY heavy heart I will be forwarding a copy of the letter to QRN on Monday to get the work side of things wrapped up... I have spoken to the Pring Yard and Crew Supervisor who states (whether it was sincere or not is up for debate) that I will be missed within the depot.

I have also spoke to QRI (the Queensland Railways Institute) which assures me that I will be retained as a member and that I will continue to enjoy ALL of the benefits of membership such as access to the Holiday Units in Coolum and all of the social activities which we have enjoyed as a family (Christmas Trees, Family Days, Etc)... So perhaps all is not lost yet.


If anyone displays interest, perhaps I shall post a transcript of the letter here.

Anyhoo, Cheers for now...

Jason...

The Verdict...

Well I'm back home, so that's a start...

Today was quite a good day and productive from a number of perspectives.

First, Dr. Keary is once again my treating specialist. Although my appointment began with Dr. McCormick, Dr. Keary came in half way through and has resumed my case.

A lot of questions were answered today. It turns out that my increasing weakness is due to Steroid-Induced Myopathy. As I am unable to be taken off the Corticosteroids, I will continue to get weaker with time, so this is now something else we have to deal with.

My last lung function test results were back, and they have shown a slight decrease in function since last time. When we asked about the effects of my continuing to smoke cigarettes on the rate of decline, we were told that the disease will continue to reduce my function at a significantly higher rate than smoking and that quitting would have little to no effect on the eventual outcome. The damage was done in 2007...

Treatment options were also discussed, it being decided that next weeks infusion of Intragam would be my last for a while (no need for a port). I will be ceasing Cyclophosphamide and transferring to Cyclosporin in a few months time and my blood pressure medication has altered in an attempt to remedy the Raynaud's Phenomenon I have been experiencing.

We finally got around to asking both Dr. Keary and Dr. McCormick about a long term prognosis. Both are now adamant that I will never be capable of re-entering the workforce in any capacity. While I am disappointed that my short career with QRNational is soon to be at an end, it is nice to finally get a straight answer on this topic and have some closure. Realistically, I think I had been expecting as much, so it didn't come as much of a shock. When I have my infusion next week, Dr. Keary has asked for me to hand him the necessary paperwork to finalise things in this regard.

That's pretty much all I can think of at the moment. If I have forgotten anything I will be sure to let you know.

Cheers,
Jason.

A (very) quick update...

Hi all,

Just a short note to let you know what is happening.

I was contacted by Dr. McCormack (my current treating specialist) yesterday to see if I was able to attend a clinic appointment with Dr. Keary (my original specialist from 2007).

I will be heading to Townsville today for this appointment as there are a number of issues I wish to discuss with him, including the possibility of a Port insertion. If this is able to be done in the next few days, the timing will be perfect, as my next infusion is scheduled for next Thursday and this will eliminate the need for me to have the Port attended to individually (they can do it before the infusion).

IF the port does get the go ahead, there is a chance that I will not be leaving the hospital today...

I shall update you as to the outcome as soon as possible.

Cheers,
Jason.

You Live, You Learn (Or Not)...

It is a common belief that you learn from your mistakes. Sometimes I have to wonder... However, before I tackle that issue, a little update on treatment...

Last Thursday (September 3) saw me up in Townsville for my monthly infusion. I have become accustomed to the feeling of dread that accompanies this. Why dread I hear some of you ask. Well quite simply, infusions are not easy on either myself or the person who has to insert the cannula. My veins have become quite scarred over the last few years thanks to the regular infusions and blood tests I have every few weeks. They are also quite small now thanks to the Prednisilone. (Apparently Corticosteroids cause the veins to shrink). These two combined make what should be a relatively simple procedure somewhat of a major undertaking, consisting of numerous stabbings in an attempt to find a vein which is willing to play the game and lovely purple bruises for a week or so afterwards. Oh how I long for a PICC Line...

Anyway, back to learning (or not) from ones mistakes...

Yesterday we finally got around to removing the old 12000 BTU box Air-conditioning unit from our master bedroom. This had been in the planning for quite some time as the replacement split system was installed early last year. Our neighbour, a painting contractor finally had his tall trestles home for a while so we put them in place and made a start. To cut a long story short, the old unit was finally persuaded out and myself and Patrick (my brother-in-law) carried it down stairs for disposal at a later date. No big deal there, well not yet anyway. One thing I seem to keep forgetting is that the more I do physically, the more waste is produced by the muscles and the more Jo-1 my body makes as a reaction to this... Oops, this is something of which I am quite aware but seem to ignore from time to time... As a result, last night was another one of those no sleeping, all aching, high fever events which Kerry just loves. One would think that one would learn... Apparently not...

I think we may be getting another bed...

Cheers,
Jason

Don't forget your...

Well, Friday was an interesting learning experience for me. It started something like this...

0730: Get up and help get Madison and Charlotte ready for school, while having the morning coffee and crumpets, taking blood pressure, blood sugar levels etc. (BP was good, BSL was 14.5) Our mornings can get a little hectic, as any parent would attest...

0830: Girls departed for school. Kerry had a few things at TAFE so I sat down at the computer to do some work.

1145: Not feeling the best. Kerry had returned home. Had a funny feeling that I had forgotten something and asked her if I had taken my morning drugs, to which she replied that she didn't know. Well, given that it is now almost lunch and neither of us can recall whether I have or not, I decide to wait until the afternoon course as I'm not sure I should have an extra dose of Cyclophosphamide (if I did actually take the morning one).

1800: We sit down to the evening meal and I take my afternoon course of drugs. I am feeling quite out of sorts by this stage, the muscle cramps are becoming quite painful, and I am starting to develop a fever. Am also feeling quite drowsy at times. I have noticed that is one extra Cyclo tablet in the bottle and realise that I did in fact miss the morning dose.

2000: I've had enough and head for bed, hopefully to sleep... Under the covers is too hot, as I am sweating profusely and out of the covers I am shivering... There is no happy medium, so I take my temperature. It's 39.2c... Decide to take a few Paracetamol tablets to see if that helps bring it down.

2250: I'm still awake and in quite a bit of pain... The fever hasn't broken and then I realise that by missing the morning course of tablets, I have completely missed out on today's Prednisolone. Ooops. I head out and take the Pred that I missed and a few more Paracetamol before having another shower to cool me down...

0120: Still awake, but the fever is down to 37.6 now and the muscles seem to have quietened down a little. Sleep follows shortly after...

So... What did I learn today? Don't forget your drugs!!! In the next few days I plan to either get a medicine box where I can split my doses up by morning and afternoon sessions for each day of the week, or keep a notebook in my medicine box so I can write down when I have taken them, so that if I am not sure next time, I can just look...

Kerry seems to think the box is a good idea, as I am bound to get slack with the book and just not do it...

Anyway all is now back to what passes for normal in my life...

Cheers,
Jason...

Hello again...

After my initial posting yesterday I had a few emails and phone calls remarking that people were unable to post comments...

After reviewing the settings, I discovered you needed to be registered with one of a few social networks (google, yahoo, MSN etc.) and log in using that ID to post...

I have turned this OFF... Anyone should now be able to post...

You will need to have an ID and log in if you wish to follow the site and have it email you automatically when I make a new post... There is a button on the right hand side with a google logo and the word 'Follow' written on it. This will take you to a new browser where you can either log in OR create a new account with one of the associated groups...

There was also a need for you to word check your comment before posting, and I have disabled this too...

Cheers,
Jason...

Tuesday, August 25, 2009

Hi.
Well, as stated in the header, this is just me talking about how I am dealing with the disease and what I am really thinking from time to time.
I decided to post on blogger as it seems to be a little more private than, say, Facebook, and therefore hopefully keep the silly comments to a minimum.
Hopefully this isn't going to go too morbid or emo. That's really not me (as you should know if you are reading this) but if it does from time to time please forgive me and tell me to build a bridge...
Now, hmm, where to start... A little 'What is Antisynthetase Syndrome?' lesson perhaps...
(If you have already researched this, then please feel free to skip this part)...

Antisynthetase Syndrome is a rare, chronic autoimmune disease. The hallmark of the disorder is the presence of antibodies (specifically the anti-nuclear antibody known as Jo-1) which attack and destroy the aminoacyl-tRNA synthetases which play a vital role in protein synthesis. Essentially, these antibodies prevent the body from absorbing protein in any form, as well as causing a number of other related problems such as:

Myositis (muscular weakness, tenderness pain, atrophy and fibrosis).
Interstitial Lung Disease (diminished exercise tolerance, difficulty breathing at rest, pulmonary fibrosis and eventual acute respiratory failure). 
Chronic Polyarthritis. (non erosive deformations of the joints, specifically in the hands, wrists, shoulders and knees due to calcification).
Pulmonary Hypertension (increased blood pressure in the artery connecting the heart and lungs)
Raynaud's Phenomenon (lack of sensation in the hands and feet due to restricted blood flow)
Photosensitive Rashes (speaks for itself)
Mechanic's Hands (build up and cracking of tissue on the fingers, similar to calluses)

It is unknown what triggers the body to first produce the Jo-1 antibody, however current thinking in my case is that it is a combination of environmental and genetic factors. Specifically, given that the disease is in some way related to Rheumatoid Arthritis indicates a genetic component, but environmental factors played a significant role in triggering.

Anyhow, as you no doubt know, I have been living with this since May 2007 and am being managed with varying success. At the current time, I am on 17.5mg of Prednisolone and 100mg of Cyclophosphamide a day, and monthly infusions of Ingragam P in an attempt to slow down progression. I am also on medication for high blood pressure, caused by the Prednisolone. Quinine to minimise the muscular cramping (not to sure if it actually helps) and a few other assorted drugs to rectify imbalances caused by the above medications.
Oh, also painkillers (specifically synthetic opiate based ones) and tranquillisers are a must in day to day life.

So, where does that leave me?

Well, at the moment, I suppose I am managing. I have good days and bad. I don't tend to walk much and given that we live in a two story house, I spend most of my time in the upstairs living area as the stairs have become somewhat of a major mission now. I haven't yet been medically restricted from driving, however I am starting to develop uncontrollable tremors so perhaps it is only a matter of time...

Other than that, all is well and I shall post here from time to time to let you all know how things are shaping up...

Cheers,
Jason.