Friday, 15 August 2014

Food Revolution

Sitting here watching The Railway man, a scene came on where a cut lunch was on the table in the train. It invoked a wave of memories from childhood. This then got me thinking about one of the biggest changes that we go through in our lives - food.

Growing up, we certainly were not well off and at times, not even comfortable. When thinking back to what we took to school for lunches, it was always sandwiches of Vegemite or soggy tomato sandwiches. If we were lucky we had luncheon and I can even remember having spam. Sometimes we also took a boiled egg. A good day was being able to buy a Joe's pie from tuckshop. Lunch time at home on weekends or holidays were pretty much the same.

Dinner was meat and veg, savoury mince or pea and ham soup. The 'meat' was nearly always either sausages or rissoles. Sunday was always a roast dinner. When I was about 10, my mother started working at a butcher shop, doing the books. We then got to experience things like t bone every so often.

When I was 12, my parents bought 16 acre's at Kholo. Here they had fruit trees, a veggie garden, chooks, pigs, cow, sheep and turkey later in the year. All was for food. Turkeys were fattened for Xmas, chooks for eggs and then when off the lay for Sunday roast. From the cow, we got milk which also gave us cream and butter (this was churned by hand), calves that became meat - the same with the pigs. We ate a lot of duck, as dad and I would go shooting. Nothing like spitting pellets out as you eat haha.

Nearly everything we ate, came from home. Our neighbour would help with the kills and he would make sausages - including blood sausage (yuk) - and he also had a smoking room for bacon. Into our normal menu, came pigs trotters and this horrible pressed meat with jelly dish that was for on sandwiches.

We did have take away. Dad would be working on the coal trucks on Friday nights and we would go to the Ebbw Vale takeaway and get fish and potato scallops. Or Chinese from Jimmy Wahs.

Even when I moved out of home at 19, takeaway was fish and chips on a Friday night. Lunch was ham and salad rolls, dinner was meat and vegetables.

I can't remember when I fish got to try pizza or KFC. But these were just a sometimes/rare meal.

The kids all grew up on fresh food. You would make vegetables and freeze them in ice cube trays. It was always things like potato, pumpkin, carrot or choko served with chicken, fish or beef. We still had the Sunday roast but they also got hungry jacks or McDonalds.

Life was still a very 'western' diet.

Through the years Italian came into our diet more in the form of spaghetti and pizza. I was 30 when I tried my first Japanese and in my 40's before I tried it again and also got to try takeaway Thai. Due to working with a Greek girl when I was in my teens, I got to try traditional Greek food.

When I look at our diet now, it is very multi cultural. I cook Asian, Moroccan, Mexican, and more. I see what little kids have as their diet and they are given sushi and fruits and vegetables that we had never heard of. I think it is so exciting for them.

The thing that I feel sorry for those growing up today, is that they will never get to experience the full flavour of fresh food like we did. That tartness of a granny smith apple and the juiciness of it. The taste of preserved cherries and peaches, that have sat on the shelf in a laundry next to an old copper washer. Food with full-bodied flavours all of their own.

I wonder what we will be eating in another 20 years time.

Monday, 3 February 2014

Where my life has gone.

Well if ever I have wondered what I have done in my life, this afternoon has showed me. In my quest of cleaning out everywhere, I came across a memory box. I didn't realize I did so many courses haha.

Not only do I have a Diploma in Crystal Therapy, I also have done courses in the following.

  •  Autobiography course through carers Qld in 2008, 
  • A training programme completed to tutor students with their reading 1994
  •  Certificate of training for lifeline in 1996 and I also have certificate for recognition of service from them as well.
  • My first aid certificate I did in 1989 with Veronica. I think it was 1 night a week for 6 weeks back then. Maybe I should update it lol
  • Certificate for Natural Healing at Home in 1999.
  • Training in Grass Roots Care for Carers in 2004

All of that equipped me to undertake the following voluntary positions.

  • Lifeline telephone counsellor
  • Vice President for Karalee S.S. P & C
  • Fete Convenor for Karalee S.S. 
  • President for Karalee S.S P & C
  • Bookshop convenor for Karalee S.S.
  • Canteen Convenor Ipswich Little Athletics Assoc
  • Wish granter for Starlight Children's Foundation and help in Starlight room and with fundraising
  • Giving talks to professionals and support care workers for Carers Qld.
  • Chairperson for Qld electric wheelchair sports.
  • Secretary for Northern Suburbs Rugby League Club
  • Smaller things like reading tutor, help with swimming lessons, helping in tuckshop. 
Then of course, those that know me from emailcash, know that I had 5 years of organizing Secret Santa and Secret Bunny with up to 300 people. 

Boy, no wonder I am tired lol. 

Going through the box, I also came across a diary that the kids kept when we went to Sydney Olympics. It gave me a giggle with things they had written. Jade would finish her bits with good night diary lol.

There was a lot of newspaper articles from over the years with Ryan. Him sitting in an F111, photos from fundraising for Muscular Dystrophy Queensland, sports, his 18th and 21st. Photos of Jade from when she was made Arts Captain at High School and her principals 'student of the year' award. 

There is a book by an American Woman Constance Foland. Many years ago, Constance joined a site I was a member of. She was writing a book and the man boy in it had Muscular Dystrophy. She would email me with things she would want to write and whether those things were possible and I would reply with yes or give a suggestion. When her book finally got published, she sent me a signed copy. 

It really is a great box to take a journey through. Lots of things that I have pushed to the deep recess of my mind, but that bring back some wonderful memories.

P.S. Sitting here thinking and there are all the cooking classes I have done, as well as ceramics and I also use to make porcelain dolls.

Tuesday, 21 January 2014


Beliefs are like fingerprints - no two people have the exact same belief system as another. No just belief due to religion, but also politics, parenting and more.

Over time, you develop and change what those beliefs are. What you thought at 20, will more than likely be a lot different at 50 and again at 70. Your life experiences, change the what you believe.

Last night in bed, I was thinking of all this when I couldn't sleep. Just what are my fingerprints on the maze of thoughts.


I was brought up Catholic. All but one year of my schooling was done at Catholic schools. I was made to go to church each Sunday, even though my parents never went: well my mother very rarely. As I got older, I would go to the pub while I was suppose to be there.

When I left home, I would go occasionally, when the mood took my fancy. Peter on the other hand, went each week, due to family pressure. When we got married, we went most weekends, unless we thought of a good reason not to.

Getting married in a church was a given, although we didn't have a requiem service. The kids were all baptised and plans were made for them to go to a catholic school. We took them to church, the same way we did when younger.

Since Troy was born as Ryan was being diagnosed, I was determined to have Troy baptised before finding out if he also had Duchenne Muscular Dystrophy. It was almost a frantic bargaining between myself and God.

When things settled down, we realized that school options had to change and that the kids would be going to a state school. Ryan also made his first communion and confirmation early, so that he could walk to do it.

I have to say that through this time, the priests at St Mary's were wonderful. I am sure that there are not many kids who would go to confession, but instead end up running around the church with the priest playing chasey. They were there again, when Ryan first realized that he would die young and wanted to talk to them. Sometimes he hated God and they were there to talk to listen to what he had to say.

Jade went with the flow and put her usual 110% effort into religion classes at school. Troy on the other hand, went for the first couple of years, then refused to go. It was just before this, that we stopped going all the time and it was down to Christmas eve open air mass. But that soon stopped as well.

So back to my beliefs. I don't believe that any one religion is right. I have done a bit of reading on different types and they all have their good and bad. I believe in all 'leaders' and these can be found if you look up Ascended Masters. I do think that above them, is one strong being.

Now to confuse you more. I believe in evolution. But I believe that some being, created the forces that led to to-days universe. It is to this being, that when I do have to go to any type of service, whether it be wedding, funeral or other, that I silently curse, for how life has unfolded.

There are too many things that can't be explained. Just as an example of a couple of incidences with me. Years ago, Ryan was a baby and I was going to visit a friend Belinda at Banyo. Every time I went to see her, I went along Rode Road to Sandgate Road. Every time, I missed the little slip road. Now I would of gone to her place probably around 50 times over the years. Only one time, did I get to take this slip road, without missing it.

On that day, while I was looking to see if any traffic was coming. The car that was in front of me, but that went to the lights, ran the red light. A semi coming the other way, collected the VW and it fell apart like a pack of cards. From the truck trying to stop, it swerved. If I had of not gotten that slip road, we would of been hit badly. I also cannot recall any sound from that day and couldn't even straight after it happened. Every sight memory is still in tact, but sound never.

The second incident, was that Peter and I were going to go to a wedding. We were going to catch a bus, down to NSW to it. A couple of nights beforehand, I had what could only be described as a vision. I saw a guy in our bedroom, telling me not to go or we would be hurt. It freaked me out big time. We didn't go and the bus that we were going on, had an accident and a lot of passengers were badly hurt.

Now you might say that these things were just luck. That's fine, that is what you believe. I believe it was a higher power, looking out for us. I also believe in the power of crystals, oils and nature for grounding.


Boy covering all the taboo subjects today lol.

I have yet to see a politician that is in it to help 'the people'. I think a lot might start out like that, but by the time we get to see them, that has changed somewhat.

I have only once, voted for one of the two major parties. Normally it is greens or independents. I think the Greens now though, are far removed from the party they use to be. With the other two parties, I think it is more a point scoring competition, than running the country to the best of their abilities.

Imagine how great the country could be, if they all worked in unison and left egos at the door.


I think Australia should help refugees. I also believe that refugees should come by the correct channels. There are a lot of genuine ones, but there are some that aren't.

I love the diversity that they bring to Australia and that there is a lot our kids can learn from them.

I had even looked into the government scheme of taking in a refugee. For those that aren't familiar with it, you take in someone and help them get set up. Things like opening a bank account, getting a medicare card etc. The reason I didn't go further, was that our house wouldn't of been set up enough for what you had to supply.

When you read the crap online of how much they are given, stop and do some research and you will find it all false. It annoys me when people spread it around before checking out the facts.

Child Raising.

Teach your children to respect others and you will have well behaved kids.

I look some of the kids of today and wonder just what their parents are doing. Mine never would of dreamt to run around a restaurant, even Maccas. They would sit and eat, then be allowed in the playground under supervision.

Going shopping, meant that they stayed either beside or in the shopping trolley, not touching stock. If we went to visit a friend, then I went with a bag that contained toys, a small blanket and they would sit and play on it. Not opening cupboards or touching someone else's possessions.

They were by no means angels, but they knew what was expected of them. Their behaviour out was very different to home haha. Now they didn't get belted, they did get the occasional smack, but more often than not, they got time out. It was not any of this super nanny minute per age. It was stand with your nose to the wall until mum calms down. They do laugh and tell others, how I would sometimes forget they were there and doze off lol.

They are not scarred, but they will like me, go mad at your kids if you don't.

So that is a run down on my beliefs. Peter's are different to mine, as are my kids. I love that we have a pope and a queen and never want that to change - well we could skip Charles. I believe in this system and maybe that is the history buff in me.

No one else believes in all I do, and so that is my fingerprint on the world.

Monday, 30 December 2013


As we say goodbye to 2013, it is time to reflect on the year that was.

I know for a lot of friends that this year ending in 13, has been the crappiest of all. For us, it has meant a lot of health problems for the whole family.

Peter - a breakdown, taken by ambulance to hospital, followed the next month by a couple of nights in with kidney stones. Work has also been turbulent, not knowing if he has a job at times, due to the downside of the economy.

Ryan - January saw Ryan start to have anxiety attacks. It is now under control, but took a while. He also became single after a long term relationship. In October, he did an at home sleep study. His specialist rang me afterwards to say that the readings were all over the place and Ryan had to go in straight away. Luckily it was the vpap being faulty and not him. He had a great year with sport, representing Qld in Power Chair Football. The support shown by friends and strangers was fantastic and we are eternally grateful. Ryan also turned 25 this year. That alone is a great achievement for him and one we were told he would never see.

Jade - As anyone who knows Jade can tell you, she works way too hard. Most weeks, she works 7 days and it can be up to 80 hours a week. She did get a week off this year and her and Corey went to Airlie Beach. The amount of work and lack of sleep, have had health effects on her as well. For her birthday this year, she told Corey she wanted a puppy. She instead got an ipad...... which she names puppy lol. Jade started up a cheer squad at Norths and had a ball teaching the girls. She also became qualified to be a wedding planner, even though she has been doing it and events for years.

Troy - Running his own business means that work is either a feast or a famine. Troy had his 21st this year and also started competing in Time Attack (car racing) at Qld Raceway and Lakeside in Brisbane. He came first in his division at both tracks for the year, which is great. In December he damaged his hand, but while not back to normal, it is getting there and at least didn't need surgery.

Spanner - stills rules the house. Has his girlfriend across the road and gives us many laughs. Abby (his girlfriend)  will come over some times to play. Spanner will play for a bit and then come inside. Abby can't get in, as she is a lot bigger than him. I will tell him to go back out to her, and he walks out like he is dragging his feet and the attitude of 'do I have to'. He will sit outside the back door until he thinks you have moved and then try and sneak back in. Personality plus in that dog.

Me - A year of health problems all coming one after another. On the positive side, I got to go to a heap of live theatre. So enjoyed it and am going to miss my theatre buddy Colleen when she moves to France for a year. Guess it just means that we will have to make up for it in 2015 lol. Financially, it has been a very tough year. So that I can get out and about to stay sane, I have sold off things like jewellery, household items and personal collections. I was also lucky enough to win a lot of tickets. I was part of a tv program filming, that should be on tv around April - I will probably be cut out lol. Can't say any more about it, due to signing privacy forms, but will let you know when to watch. I have enjoyed my visits to the nursing home and getting to know the lady I visit and hearing about her life.

I think that this year has been all about lessons, especially in the last month or so.

I have learnt that I can't do it all and that it is okay to ask for help. For the first time in around 30 years I have worn outfits without sleeves. I hate my arms and I was always worried what others would say. I realized recently that how you dress or look, there are those that will criticize others, no matter how good or bad they look.  So I might as well be comfortable and cool and if people don't like it, it is their problem not mine.

Even though I have done it above, I will not be doing it in the future. I don't have to explain how I get to do things and I won't be from now on. Just because we ask for help with fundraising, does not mean that every aspect of our lives has to be explained. People just have to accept that we have done everything in our power to do things on our own, as best as we can.

Another lesson is that family is not those related by blood, it is those that support you and make you a better person.

2014 will be a busy year. I am going to try to pace myself and not spread myself over too many projects. I will be making sure that I take time out for myself, to regroup and relax more.

This is a small snapshot of our year. The good, the bad and the ugly all happened. This has influenced the people we have become, at this point in time.

But we are all here to live another year and for that I am eternally grateful. We wish you lots of love and laughter, health and happiness in 2014

Sunday, 3 November 2013

Life on the run

It has been a while since I wrote, well just over 3 months, but it feels like 3 years with so much happening, but that will come later.

I never want people to feel sorry for me. What I do want is friends who don't care if I vent and that can vent to me, knowing that I don't mind. Mostly I vent via facebook. It is my communication to the outside world. 

If you think about how you vent, you may find it is to people you work with or see during the course of the week. Due to me not working (and yes I have been feeling worthless lately due to not working), I don't get to see many friends. In fact since the 7th October, I have seen three, face to face. No big deal, as everyone is busy with their own lives and we are not always free at the same time. This is just to show why I use facebook as my outlet to vent. Most of the people on it, except for a couple that I play games against, are all friends. 

One thing I have noticed over the past couple of months, is that when I put up a status, within 5 mins, there have been comments posted on friends pages that seem to be pointed at me. At first I thought that I might be reading something into it that wasn't there, but it seems to happen nearly all the time. 

Due to this, you will have noticed that I haven't put up much of anything. Everyone has different things to cope with and at different levels. It doesn't mean that any one person is worse off than anyone else. With me, writing it down, is my way of letting go and not dwelling on it. It is also the way that close friends know what is going on and I can get support just by knowing that they understand what is happening, even if we don't see each other.

Now having said that, I am going to put here all that has happened and if you don't like it, tough shit. 

It all started with having an xray on my foot. Yes I told people about it, but didn't say the things that the radiologist said it might be. So scared shitless until I saw the orthopaedic surgeon and had the mri to find out it was arthritis. Plan of action, get orthotics made and if that doesn't work, then surgery to fuse the bones together in my foot. 

No sooner had this been organized, then I was back seem him again and having another mri on my wrist. I thought just a ganglion but no, it was that plus Teninosis, which meant it had to be aspirated and a cortisone injection. This gave relief for a couple of weeks, but the pain is back, waking me at night. So I have to make an appointment to go back, as the orthopaedic surgeon said if it didn't last longer than a month, then it would have to be operated on to fix it.

I had the above mri, on the day after the high tea fundraiser. While the high tea was a success, it was a lot of work and anyone that knows me, knows I throw my whole self into it. Until it was pointed out on the day, while pouring coffee, my hands were shaking. By the time I sat down, my feet felt like concrete blocks and I couldn't really move them properly.

The next day and the Monday saw me lose control of my bowels. So another mri, as they thought I would have to have surgery immediately. Jan drove me to the Wesley and I am glad she did. I was in a bit of a daze with it all and it was good to have someone else there to hear what was said and to relay it. 

It probably took nearly a week for it to come good, then I had to see the specialist again at the Wesley, who talked about pain relief by injections in my spine, which I rejected and also to see a rheumatologist  to see if there is an underlying cause to the changes in my body.

The day prior to seeing him and Ryan's birthday, I got a call from Ryan's thoracic specialist, saying that readings from Ryan's latest home sleep study were all over the place and he wanted him in either the next day or the one after. Due to so much happening those two days, I told him no and when Ryan comes back he would come in. An appointment was made for the Tuesday. 

Again more worry as to what was happening and I don't think I told anyone. Thankfully it was that his ventilator was playing up and not anything that was happening with Ryan, so once that was established, he got a new machine.

In those couple of months, we had medical bills of over $1000 just on the above mentioned items, not the regular things we have. At the same time, Peter's job was an uncertainty. 

Also the place that Ryan gets his physio and ot from, has started charging $150 an hour. It is to come out of his package and they told everyone to get a review to cover the charge. Only problem is that we have had a review and been identified as needing more, but there is no money for it. We were in the middle of trying to get Ryan a new cushion to help with the pressure sores he had been getting, when we found this out. It meant that we sort of gave up on finding a cushion, as trialling more would mean charges. Luckily, Ryan found that just getting some gel pads to put in his current cushion will do. 

We had just wiped out any money we had on my medical bills and Peter going with Ryan to Sydney, along with the $2000 spent on the van, to be told we need to spend more. The rheumatologist is going to be $390 for the initial consult :O

Peter's job is safe until Christmas at the moment. We have been able to fit in some morning shifts for carers, so this way Peter can start work at 5.30 and come home at lunch time. I can then go to aqua aerobics, to try and alleviate some of the pain I have. 

We have come to the decision that if we can get enough for our house, then we can move and have money to get a new van and be able to put some away. If not, MDAQ have said they can assist us to fundraise for it.

Like I said, everyone has had trials that they have to deal with. So when you see me, or someone else on your friends list, writing about what is happening, know they are doing it because there is no one around at that time for them to talk to and getting it out there, takes some of the pressure off of their shoulders.

Saturday, 27 July 2013

Explaining Funding

Well what a week we have had with services being cut. Sucks big time, but as always we will get there.

Best to explain it all, as it is hard to understand.

Ryan has funding from 3 different areas.

1. Family support package. This is a fixed amount from Disability Services Qld and the amount we took out of their hands for managing and put into the hands of Muscular Dystrophy Qld. This pays for 2 hours a night personal care, out of home respite and help with a cleaner fortnightly, to do the things I can't. This amount is $22,000 per year. MDAQ gets between 5 to 8 percent for helping us manage this (the more I do the less it is). With the charge for carers at $40 an hour, there isn't a lot of room for movement. This amount never increases and the amount of services it gave us when we first got it 7 years ago was double what we get now.

2. HACC funding. This gave us 2 overnights a week, but at a reduced cost and we had to pay the difference out of our own pockets. This is Federal Government and funding has been reduced to half, so we lose 1 night a week overnight care. This is not guaranteed and can go at any time. The full cost of the overnight shift we are losing is $382.50, so not an option to even pay the full amount without selling a body part.

3. Post School funding. This is to help Ryan get out into society, access his job agency and has been used for helping him do his photography course and helped with other access. This is an amount of hours. Due to weeks when we have been away or Ryan in respite or cancelled shifts, Ryan had an abundance of hours. So much so that instead of 30 hours a month, he could get 46 hours a month. So it helped with him accessing sport and another day a week to help with appointments etc for him. Ryan's case worker for this lot of support, didn't realize it was running low or in fact that it had gone over until now. So all of a sudden it is now back to 30 hours.

On top of this, there is respite at Montrose which was 4 nights a month. Due to increase of people accessing the service, for the next 6 months, Ryan will only be able to access it twice.

So in total, what we were getting was 7 overnight shifts, 12 personal care shifts, 7 days to access community and 4 out of home respite shifts a month.

What it will now be a month is 3 overnight shifts, 12 personal care shifts, 3 days to access community and the 4 out of home shifts in August and November.

Confused yet? As you can see, nothing is straight forward. When there is an increase in charges, it will all change again. MDAQ are our advocate with DSQ, but as you can see we don't just deal with them. Due to having some savings that we have been able to carry over for a once off, we can use it to pay for a carer when we have something on. So for example we have a wedding to go to and am looking at a 9 hour shift @ $51 an hour.

Our funding does not have any provision for equipment in it. MDAQ are trying to get a new bed for Ryan, as his keeps breaking down.

We were offered 2 x 5 hours days out of home respite by DSQ, but the place it was offered at was 1.5 hour drive from here. So 3 hours travel of a morning and again of an afternoon. Apart from the fact that Ryan is not up to that much of a drive a day, is 6 hours travel for 5 hours break realistic? I think not. I also think it was a token offer, knowing that it was unsuitable.

With regards to the new disability care that the federal government has brought in. I don't know how that will help or hinder us. It won't be in Qld until 2016 and the more I read about it, the more confused I am. There just doesn't seem to be any clear guides as to how it works and what help you get.

All of this is nothing new. Each year this is what we have to deal with. You seem to get ahead one step then 2 back. After 7 years I should be use to it. The sad thing is, that while I can only pray that we didn't have to go through this every year. I know that it will only stop when Ryan is no longer with us and we don't need it any more.

So I just keep fighting it all and let off steam in here and facebook when I can. I know it is hard for some to understand and I hope this explains it all a bit better. We are lucky that we get help, but it has not been from just luck. It has been from me being a bloody bulldog and fighting for it. I will continue to do that and if people think that is just me whinging, then the unfriend button is up on the right.

Wednesday, 10 July 2013

Rules for all

Recently Ryan went into Dept of Housing to put his name down, so that he could move out and be independent. He did the forms and was sent away with forms for his doctor to fill out. Within half an hour of leaving, he got a call to say not to bother to get the forms filled as he doesn't qualify.

On a day when I had a meeting with MDAQ, we rang housing to see why. There reason is because Ryan had answered the questions (truthfully), that he had to stay put. He told them that 20 years ago we built this house and it suits his wheelchair. That we look after him and haven't hurt him. So because of that he didn't qualify.

Our advocate pointed out that the government had a program (whose name escapes me at the moment) that meant that those with disabilities couldn't be excluded due to having a disability and that also allowed for them to live in society. This programme is now scrapped.

Unless the house becomes unsuitable or we hurt Ryan, he has to stay with us forever. Now I know we don't have forever, but imagine the disabilities that people have that do go on. They must stay at home.

I know that the waiting list is a mile long and I asked when the time comes that we can't look after Ryan, what then. Or if we want to move to a smaller place and it isn't suitable, what can we do. Well apparently we can then put down Ryan's name, as the housing wouldn't be suitable and if we couldn't look after him, it would be classed as unsafe.

Great!! I thought, well at least then we could get help. Hmmm, not really. You can only  put their name down when that happens, not beforehand knowing it will happen and no they won't find somewhere straight away, it will still be years of waiting.

Getting the picture yet? We will have a society of elderly looking after their children, when they really can't or a bunch of people living on the streets.

Now do you think that they apply these rules to everyone? Do they ask low income earners for example, if their parents have a house and whether they harm them? As we know, most would say no. So why aren't they made to stay with them? Doesn't everyone deserve to be able to live an independent life?

I did ask Ryan why he hadn't shown them my list of 308 ways to knock him off. I am sure then, that they might have decided he was in an unsafe environment hahaha.

Just imagine if you were told that you had to stay living with your parents. How many of us would be up on murder charges by now lol

If you want to know, just what it is like for a couple of brothers with MD living on their own, then watch this link. Scott and Daniel are from Brisbane.

Scott and Daniels Story