Saturday, November 19, 2011
For example, as I have Spina Bifida, I attend the Spina Bifida Clinic at Westmead Hospital (the adults hospital) in which at the end of the day, it has become a "referral" clinic. Basically you see one Doctor who might know a little bit about your condition to which they say you need to be looked into and referred to say the chronic pain team or see the urology clinic or the neurosurgery clinic, etc. Now yes that is somewhat good because it does 'streamline' services, but it doesn't help the patient at the end of the day.
Simply because referring to these clinics can lead to long waiting times, to which currently the chronic pain team or clinic are currently not taking on any new patients at westmead unless its honestly an emergency, otherwise the waiting list stands at a minimum 2.5 years before your going to even get in the door. And that is only the start, or end when you think about it.
I don't know how or why things have gotten this bad. Yeah ok the previous Government did undercut or not invest in health, but given now funding has somewhat increased, has things gotten better - hell no!!
I mean, what happened to the good old days when I was a kid and went to the children's hospital at camperdown and then Westmead when it moved and I attended the Spina Bifida Clinic and you would see all the doctors you required right there on that clinic day (which is generally a Friday, or used to be) and you would only get a referral if you had to have tests or if a certain Doctor was not able to make the clinis that day.
Its like that was the good old days or more so, when you're a kid, they chuck all the resources at you, but once you become an adult and get 'referred' to the adult clinics respectfully, ots like thank you and well good luck.
Its a joke and both politicians, department and hospital heads need to make change happen. Yeah it will probably be a painful change but its a necessary one if you ask me. Its time that we look at what can be done to make things become better for the patient instead of the hospital and the budget at the end of the day, because there should NEVER EVER ABE A PRICE ON ANYONE'S HEALTH at the end of the day!!
I am sorry for the caps words above but I am frustrated and over it. No one wants to make change happen for the better and they seem to want to put a price on patients or you and I at the end of the day health wise.
Its just not on and not certainly fair!!
Monday, October 3, 2011
Sunday, September 11, 2011
I think back to the day in which was September 11, 2001. It seemed like any other day really, well in my eyes. It was a Wednesday morning I was woken up as usual by my mum to get ready for school. Being this was my final year in high school and so close to trial HSC exams and cramming as much as possible into my brain, I was slow to wake up, yet the tone in which my mum spoke got me worried.
She said that two planes had hit the World Trade Centre in New York City and another plane had hit onto the Pentagon in Washington DC. Now being a teenager I wasn't sure of what the World Trade Centre was. Stupid I know but being all the way in Sydney I mainly knew Australian Icons. However in my defence I would say that I did know that there was two very large towers that defined the sleepless city. I also knew what the Pentagon was (I have Hollywood for that part).
So literally jumping out of bed, I went into the lounge room which by now my mum had it on CNN (at the time the only places you could get CNN was on cable - Optus TV or Foxtel) and I remember seeing the pictures and thinking is this real? Is this just Hollywood playing a joke on us or a movie trailer to a new action filming coming out in the summer, but no, it was in fact true.
Looking at the pictures and seeing the text below the screen ticking across I just couldn't real comprehend or even believe what was actually happening. I then looked over to the clock and realised that I would be late for school (having a disability does help as I had transport paid for and arranged by the Dept of Transport NSW and Dept of Education and Training in NSW at the time).
On the way to school, within our driver's van we remained listening or glued really to the radio and hearing at the time The Morning Crew (Wendy Harmer and Peter Moon) in which the voices of the hosts really brought home how much this tragedy really was. It made you just feel sick really.
I do remember this one caller who came through and she was hysterical as one of her family members (if I remember clearly I believe it was her son) in which she just wanted to know what was happening as she was in the car on the way to the airport and it was when Wendy Harmer came on (one of the Morning Show hosts) and said that they would be taking a break for a couple of minutes. All that was heard was a song (that I can't remember exactly) and they came back on and I just really remember one of the hosts of the show saying "I'm sorry folks but we have the grave and I mean grave news of informing you that the twin towers have collapsed. They are just rubble. I think just the emotion that came through made me and my fellow passengers, friends in fact including our driver want to be sick.
I remember that our driver at that stage said he would be pulling over and we prayed. We prayed for the victims, for the survivors, for the emergency workers and rescuers that maybe they would find peace given what had happened. It might sound silly but it was the only thing we could do.
I then remember coming into school and I was running a little bit late for my first period lesson - Geography in which over the last couple of week we had an exchange teacher from the USA. I remember walking into the classroom and that our normal teacher, Mr Gledhill, was at his desk and he said that given everything that had happened this morning that we would talk about the events that had unfolded.
It was a couple of minutes into explaining what had just happened before class started our teacher informed us that the exchange student (who I cannot for the life of me remember her name and for this I truly do apologise) was not coming in and that she was in fact packing to go back to the United States as her brother worked in the World Trade Centre and well was not sure if he got out or not. In some ways I felt so sorry for her because she was a very, very long way from home.
I just wish we would have found out if her brother survived or not. At least then either way we would have been able to say we are thinking of you and your family and to this day, every time 9/11 comes up I do think about her family and hope and pray that no matter what, that she and her family would be ok.
I remember the rest of the day was spent watching, ready, searching on the net on what had happened. To this day I still can't believe what did unfold. I know that in this generation and many more to come, that 9/11 will be remembered for the tragic loss of life, for the way lives where suddenly turned upside down and inside out.
So ten years on now we think, pray and hope, continue to build and renew, become stronger and more resilient, willing to fight and show terrorists that no matter what, we will fight back!
Ten years on we remember, never forget and show our solidarity.
Wednesday, July 27, 2011
Thursday, June 9, 2011
Thursday, March 24, 2011
In some ways I guess it is because this is real life – duh! That would be the logical explanation but I think it is also because it shows how much we have grown up from those many lifetimes ago and have become the people we are today.
I know this does sound completely stupid and must seem as though I am “high” from whatever meds I am currently taking for my back pain issues, but it’s not really. In some ways I wish I could go back in time and relive my youth, do so many things differently to what I did, live a little more, explore new territories but that is just wishful thinking at the end of the day.
Ok so in some ways I am jealous of Doctor Who (copyright BBC Cyrmu – have to keep the legalities in just for extra protection) and his TARDIS (again copyright BBC Cyrmu) as he can go back in time and see things from a different light or hell, just go back to an hour ago and maybe do things differently but then where would the fun be in that (although would be even more fun if I had control of the TARDIS and his sonic screwdriver).
I know, I know, that really shows the inner doctor who nerd of me, but it’s true, think about it for a moment. I am sure most of you have felt the same in one way or another.
Though in most ways I am happy and glad of the person I have become today. Yeah sure there have been a few downs but there have been a few up or good points which have shaped who I am. I have a loving partner who I love and support very much, the love and support of my family and very close friends.
I guess in a way you could say that our past and our present make us who we are, never the same but always different.
Tough I still reckon it would be cool to go back in time and maybe have some fun causing havoc - don't you?
Wednesday, March 16, 2011
Ok so this is going to be a blog that is somewhat very personal, but I thought it was worth sharing none the less.
A lot of people normally see a side of me, well a face that I put on, a happy one, but i am far from happy. Why you ask, well its because of my disability which I was born with and no before anyone asks, I don’t blame my parents.
I have been living with a lot of pain over the last couple of years. to explain in short I have Spina Bifida, however I have a rare case that is not common and the doctor have trouble trying to work out the best course of action as I have fatty/scar tissue wrapping around my spine causing all sorts of issues.
To explain more, I have had 4 back surgeries, one when i was 6 months old, then 4 and a half, 16 and 19 with the last one in 2003 having complications due to spinal fluid leakage in which it was advised by my previous neurosurgeon that another operation would not be a possibility because there is not enough skin to hold.
However in january this year, my new neurosurgeon has advised that he can operate and there are ways around/patches which can be used to stop spinal leakage from occurring, the only catch is that he is not able to guarantee if I will get better, stay the same or in fact get worse.
Well the problem is that with that fatty tissue, there is nerves running through such tissues and as they cut away the fatty tissue, they can cut or severely severe the nerves which could in fact lead to further problems. hence why the surgeon has stated it would be exploratory but they will try their best not to cause to much distress.
Now your probably even thinking why would I go ahead with the surgery when there are guarantees. Well that again is simple - I need to do something and try and see if it works or pays off. Yeah if it gets worse, it gets worse but it has to be better then what the current situation.
The current situation is that I am currently in Westmead Hospital since last Friday because of increased back[ain and complete weakness of my legs. Don’t get me wrong, I do use a wheelchair to get around in the community, but at home I generally use walking crutches or just hold on to things and try to walk.
I am over the pain right now and just want to see what may or may not happen if I have the surgery, the problem is the doctors are unable to do the surgery while I am in here which worries me a little.
To say the least the last 6 months or so have been so bad with back pain that, well I have wanted to do something which in all honesty would be a cowardly thing to do but when your living with so much pain it does become unbearable.
Yeah sure I am on pain medication but thats not really a long term viability. Something needs to be done and right now the only thing that could be at least some benefit if not no benefit at all is the surgery.
Again your wondering why I am telling you this and the truth is, I wanted to go, well pubic and say that if you are living with back pain or problems alike, then you certainly aren’t alone.
I just hope that things improve soon if not the wheels are put fully in motion for this surgery to happen because I am just over all this pain!!
I would like to note that I do have a wonderful support group. From my family (my mum, dad, and little brother) to my wonderful partner, Brett to various friends and relatives!! Without their support I know I could not have gotten through this or the last 6 months!!!
If you are looking to find out more about spina bifida, then please click on the links below -
Monday, March 14, 2011
I have no idea why I am writing this blog about my list of breakup/hurt songs for?
I think it could be simply because I have quite a bit of back pain right now and I am listening to this playlist right now - weird I know but I am over pain right now!
These are the songs I play when I feel down, hurt or have broken or dumped by someone.
Well without further, here is my list
- Left outside alone - Anatascia
- One of us - ABBA/A*teens
- The Call - Backstreet Boys
- These Days - Bardot
- Sorry seems to be the hardest thing to say - Blue/Elton John
- Stronger - Britney Spears/Glee Cast
- Beautiful - Christina Aguilera
- Heartbreak (Make me a dancer) - Freemasons feat Sophie Ellis-Bextor
- He Don’t love you - Human Nature
- Don’t wanna let you go - Five
- Over you - Sophie Ellis-Bextor
- Total Eclipse of the Heart - Glee Cast
- Bad Romance - Lady Gaga or Glee Cast
- Half a heart - H & Claire
- The Letter - Hoobastank feat Vanessa Amorosi
- Sorry - Madonna
- If I never see your face again - Maroon 5 feat Rhinnana
- Wake up call - Maroon 5
- So What - P!nk
- Lonely no more - Rob Thomas
- I never liked you - Rogue Traders
- Have you ever - S Club 7
- Be that way - Scandal’us
- I can’t decide - Scissor Sisters
- Kiss you off - Scissor Sisters
- Who do you think you are - Spice Girls
- Hard to say I’m sorry - Westlife
- My Turn - Yehonathan
- Who do you think you are - Spice Girls
- What about us - John Barrowman
Well there is my list. I know there are some weird song, but this is my playlist when I am feeing down and out of it!
I would like to also hear what songs you think or are great hurt, down and out of luck or breakup songs?