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.
Wednesday, December 23, 2009
Friday, December 4, 2009
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...
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...
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