NSW Health.....Needing its own health check

I know I have somewhat talked about this in the past, but its one of my issues which is close to my heart because I think the way in which NSW Health currently runs for not only everyone, but more so people with disabilties is disgraceful.

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.

Why?

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!!

10 years on from high school graduation

Today I was going through some old items of mine to discover my high school graduation certificate from Balmain High School (now known as Sydney Secondary College Balmain Campus - mouth full if you ask me!) and I was surprised to learn that it has been just over 10 years since I graduated year 12 and it got me thinking, what has changed in those ten years.

I know one thing that has definitely changed for me is my acceptance of who I truly am in life and come out to both my parents, friends, past and present co-workers and that certainly has been a weight off my shoulder. I would also like to point out that it does get better and it does become easier. Coming out as a gay man was the best thing for myself, my health and my sanity!

In high school I was confused and was not sure of who I was exactly and what I truly wanted out of life. I was teased for being gay before I knew or at least whilst I was trying discover who I am exactly. But with that said children or at least teenagers can be harsh and bullies in which I would like to point out an old saying here - 

'sticks and stones my break my bones, but words will never hurt me'

Let me tell you that saying is still very true to this day and will always be the case because people who don't understand or accept are just plain blind sighted and ignorant! If I listened to most of the bullies and people in general I would probably not be here writing this post!

Getting back on track though, the one thing I was darn sure of was never going to university. I know weird but in some ways I knew deep down I could not cope with both the workload and studies required. Having a slight learning difficulty would also just make things worse, however now I am starting to think about going to university and maybe completing a degree or diploma (still deciding on what I wish to study first) but I also haven't ruled out going to TAFE either.

One thing that has changed is my health, which has seen probably better days, weeks, months, hell even years. I now use a wheelchair to get around when in the community as such and around home I can either use my walking sticks or can try to walk around like a penguin (yeah yeah laugh all you want at that - smart ass! lol). Prior to that in 2007 I used to walk around with a walking stick (yeah ok probably looked like an old man, have to keep you young whipper snappers in line you know hehe) and prior to that in 2002 I was able to walk fine.

I hear you say why my health is been well, so messed up? Well it's a little bit complex but in short I was born with Spina Bifida and due to its complexities I have been having ongoing health issues (and multiple admissions to Westmead Hospital - shuddering at even the thought let alone typing to words).

Another thing that has changed for me is that I am in a very loving, happy relationship with my partner Brett or Brettles as I affectionately call him. I am engaged and (trying) to plan a commitment ceremony (stupid not being able to get married - grunt) for next year (2012 around early November). 

I am trying to pay off debts from a one fucked up ex (and they certainly know who they are, wanker!) who made sure I was screwed over royally financially - alas I shouldn't hold that much of a grudge, but when we are talking about $30k above its not a pretty picture!

I have a half sister (who really is like a sister to me), Kerri who when having a hard time in hospital always manages to make me laugh and put a smile back on my face!

I have a wonderful mother, father and little brother who have helped both myself and Brett during hard times both financially and physically and are always there when we need them or they need us (love you mum, dad and shan)

I have fantastic friends like Emma, Kristi, Allanah, Steve and the kids, Rebecca, Scott, Sandra, Annie, Maya, Kylie, Bridget, Eddy and Nat, Jarrod, Adam and Gavin, Vito and Boyd, Johnny, Dean, Leah in all honest there is way to many to mention on here but I will say that if I didn't mention your name I am sorry but you know who you are and you know how much you guys mean to me! It's like a huge family of support really with my friends and for that I am truly grateful.

So I guess really at the end of the day that within that 10 year period so much has really changed both for the good, the bad and well the in between. Would I change it for anything in the world? Hell no!

it's those ten years which have shaped me who I am today and for that I grateful!

9/11 - Ten Years on

It's hard to believe that it has been just on ten years since the world changed. The fateful day in which so many lives had been lost, murdered you may say because a terrorist group wanted to show its might, yet thinking about it all it did was bring the world together, a city, nation together as one.

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.

Another Hospital Tale

It seems to be every time I come into hospital I seem to have a real life story to share, yet this one has two significant and important messages. 

The first story is about a gentleman who was riding on his motorcycle on his property in which he ended up having an accident. Now he was with two other people at the time but they where closing up and sorting out the locks for the paddock and by the time they caught up with him they found him on the ground, blood pouring out, dazed and confused. The short story is he is in hospital because he has memory loss (as he cannot remember how or what accident he had and he keeps having memory lapses of what day, year, month or even job he has) and has a large blood clot in which he is receiving medicine to help this issue.

However the moral of that story is to always no matter where ever you might be, if you are going to ride a bike, motorbike or scooter or even a buggy, please ensure you wear a helmet and always stay in a pack if you are going out anywhere. This ensures if anything goes wrong, at least you will have someone to get or give help.

The second story is quite a sad story. This is a story of a woman who came onto the ward and has been in rehabilitation for drug addiction since 1979! 

That’s at least 32 years!

It is just amazes me how much drug addiction can do to people and family. In this story the sad part of it is that one of her son’s lives over in the UK and is only coming over to Australia later on this year to renew his passport, whilst the other son was by her bedside with his wife trying their best to understand what went wrong with her.

Her son and her brother tried hard to communicate with her but as she did not have her hearing aides (none of the family knew where they were as she lives with a flat mate who coincidentally on the night she came into the room I am in, snuck her out for a smoke - naughty naughty) and you can see on their face how much they where upset, strained and tired as this had been her third admission this year, previously been admitted to ICU because of a drug overdose on her medication.

It truly shows the effects of drug addiction can have on a family and what toll it can also bring to have a loved one, a son or daughter being thousands of miles away and not willing to have any contact with you at all.

It’s truly sad.

So what I ask of you if you are reading this is to ensure you always stay safe, in a pack of with at least a couple of mates, ensure you wear all appropriate safety gear such as a helmet of goggles etc and also please and I can only really plead that you stay away from drugs like ICE, cocaine, marijuana etc as even short term, part term or long term addiction of these drugs can have a massive toll later on down the track.

I would also like to point out that if you are having issues with a friend or you feel you have an addiction and wish to give up, there is help out there and I have a couple of numbers below which you can contact anonymously:

LifeLine: 13 11 14 or you can also visit their website at www.lifeline.org.au 

Family Drug Help Line: 1300 660 068 or you can visit their website at www.familydrughelp.org.au 

SANE Australia: 1800 18 SANE (7263) or you can find out about SANE Australia’s mental health work and fact sheets online at www.sane.org.au

Kids Helpline: 1800 55 1800 or you can find out more on their website at www.kidshelp.com.au 

Please remember that you can remain anonymous and there is help out there!

Life.....how short it is

This is probably the most saddest blog I have had to write so far because it has kind of hit home for some reason.

I am currently in Westmead Hospital due to ongoing health issues in which I have made a couple of new friends in here and sadly, one of them is dying from huntington’s disease.

Since meeting him on Saturday Morning when I first woke up in the ward and beginning to chat with him, I realised that he was a fighter, someone who would no matter what try to beat the odds. He has tried to get the hospital staff to bring him food he can eat (however he has a feeding tube which has now been stopped, although he still thinks he is being fed through this). Going to the bathroom and trying to shower himself he has at everystage tried to keep his independence even through his body is not allowing him.

It shows your the mind is certainly a powerful thing over the body at any time when you think about this.

His condition is a heart retching one because the pain he has been put through over the last eleven years have now taken his toll. It has only been in the last twenty four hours that his family and doctors have agreed there is no more they can do for him but to let him slip away peacefully.

Speaking with him today was the hardest I have ever done as the family requested he not know what is happening to him as to not put him in a panicked state (which is understandable given his limited current capacity). However it is harder for his wife and two daughters who stayed by his bedside last night until two-thirty this morning before being kicked out by the nursing staff to only return in the mid morning today.

My thoughts are certainly with them at this stage because I know it is not easy to watch a loved one slip away. I did it over six years ago with my grandfather and I have to say, this gentleman is certainly like my grandfather, a fighter!

It is this that makes me remember what I went through with my family and it shows me and certainly reminds me how short life truly is and that we should certainly never take it for granted.

My heart and thoughts certainly do go out to this family and to anyone else who has either been through the same or similar things with loved ones, friends, parents or children as it is certainly something that I would not wish upon anyone.

Remember, life is short and enjoy every minute of what you have!

Random thought of reflection

This afternoon I was going through some stuff from high school and a thought occurred to me just how much if feels like a lifetime ago that I was back in high school, not really worried about the stresses of life and it made me think why that view has changed.


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?

Back pain hell!!

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.

Why?

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!!!

Note:

If you are looking to find out more about spina bifida, then please click on the links below -

• Northcott Spina Bifida Services (if you can, please donate to this worth while charity)
• Spina Bifida (wikipedia)
• Spina Bifida Hydrocephalus Queensland

Song of hurt/pain/breakup/down and out

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

1. Left outside alone - Anatascia
2. One of us - ABBA/A*teens
3. The Call - Backstreet Boys
4. These Days - Bardot
5. Sorry seems to be the hardest thing to say - Blue/Elton John
6. Stronger - Britney Spears/Glee Cast
7. Beautiful - Christina Aguilera
8. Heartbreak (Make me a dancer) - Freemasons feat Sophie Ellis-Bextor
9. He Don’t love you - Human Nature
10. Don’t wanna let you go - Five
11. Over you - Sophie Ellis-Bextor
12. Total Eclipse of the Heart - Glee Cast
13. Bad Romance - Lady Gaga or Glee Cast
14. Half a heart - H & Claire
15. The Letter - Hoobastank feat Vanessa Amorosi
16. Sorry - Madonna
17. If I never see your face again - Maroon 5 feat Rhinnana
18. Wake up call - Maroon 5
19. So What - P!nk
20. Lonely no more - Rob Thomas
21. I never liked you - Rogue Traders
22. Have you ever - S Club 7
23. Be that way - Scandal’us
24. I can’t decide - Scissor Sisters
25. Kiss you off - Scissor Sisters
26. Who do you think you are - Spice Girls
27. Hard to say I’m sorry - Westlife
28. My Turn - Yehonathan
29. Who do you think you are - Spice Girls
30. 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?

We used to be friends

Well I hate to say it, but i certainly believe that the song 'we used to be friends' by The Dandy Warholes (if you don't know what song I am talking about, here it is for you - http://www.youtube.com/watch?v=Bm1g5Yg0hUw&ob=av2nm) really does have a meaning to it.

Why does it have a meaning, well because I am disappointed in a couple of people I used to be friends with back in the day and have tried on numerous occasions (more so recently) but they just seem to snob me off. I know people change but honestly its just rude!

I feel some what hurt because these people where really close to myself, actually helped me during dark times, fun times, sad times and were just there we I needed a friend. Ok yeah I might have lost touch with them, but the minute you try to make it up and just not say either hello back or block myself of certain apps, msn or yahoo is just rude. What may have been said in the past, and i am talking like childhood year - kids can say and be real bastards, but hey where adults now right? So whats the problem............who knows, all I know is if thats the way its going to be, then fine, don't come crawling back later on with your tail between your legs acting like a sad puppy cause I won't be listening............or maybe I should and treat you the way you have treated me!!

Oh well, as the song and the headline for this post state, we USED to be friends! Good bye and goodluck!