Going Purple on March 26!

Hi! I bet you didn't know my favourite colour is purple.  But I like it even move now, because I discovered March 26th is Purple Day! Wow!  But if you watch this video clip for the Launch of Purple Day 2012 you will discover the serious side to the fun behind purple day!

Purple Day was started in 2008 by Cassidy Megan, because She wanted people with Epilepsy to know they are not alone".  March 26th has become a day where people with epilepsy and seizure disorders, their families, friends, school mates and work colleagues stand in solidarity by wearing purple. 

This year I want to invite you to stand out in crowd on March 26 and wear purple, or should I say not stand out, because hopefully everybody's gone purple in support of someone they know who suffers an seizure disorder.

Many people may recognize a grand mal seizure, but did you know the are now over 40 different types of seizure disorders that have been identified. I believe I experienced a type  of seizure long before I was diagnosed with epilepsy.  I was told because I have a normal EEG I can't not suffer form epilepsy and yet for all intensive purpose it looks to bystanders like I am having a 'mild' form seizure. Eventually, a neurologist diagnosed me as having a complex-partial seizure or 'epilepsy'. My epilepsy is a common secondary disability to Cerebral Palsy. 

Relief! Over the I have been wrongly diagnosed with an anxiety disorder.  Despite me and my friends identifying definite triggers such as me overheating and crowds.  I like the majority of people with a seizure disorder do not have grand mal seizures.  I do not loss total consciousness, although I appear to be unconscious I remain fully aware of what in happening around me but like someone who experiences a grand mal, I have abnormal body movements which generally only last 30 to 60 seconds. I am left feeling pretty washed out and exhausted afterwards. 

Like me 50% of people who experience seizure they can not be controlled by medication. When you can experience something like this at any time, you do feel like a bit of a 'misfit' and going out alone makes me feel awarked. When I have a seizure I do feel like I making a sceptical, a bit like waring bright purple before it became the 'in colour' to wear. 

Sadly there are many misconceptions about epilepsy and seizures.  Many are too afraid to step in and help and yet that's the best thing.  While someone is convulsing, unless their at risk of serious injury the best thing is not to touch them until the movement has stopped and then you just need to roll them into a recovery position and make sure the airways clear.  Don't go sticking objects in the mouths, or trying to hold the tongue. You can't swallow your tongue you we might bite it and that's about it.  I not sure where that came form.  

You can get the facts and figures at http://www.epilepsyqueensland.com.au/site/ and download free first aid posters with your there!

"Having epilepsy doesn't define who I am. On March 26 spread the word by wearing purple!" You can also make a donation to purple day at Epilepsy Queensland. 

    

Come be a Purple Day Hero

Cassidy wants people everywhere
with Epilepsy to know they
are not alone! 

Purple day was start by nine year old Cassidy Megan in 2008. The primary aim of purple day is to raise awareness about epilepsy and other seizure disorders.  To do this Cassidy decided to simply ask people to wear purple on 26 March.  By wearing purple people who experience seizures are standing in solidarity in saying ‘no’ to the isolation people with epilepsy and other seizure disorders can faces.  

Purple day is now celebrated in many countries around the world and both Epilepsy Queensland and Epilepsy Action Australia are encouraging people to hold “Purple Day Events”, in there homes, schools and workplaces. Here are some suggestions form Cassidy herself; have a party, parade, organise a walk, put up posters, contact media and Politicians.  However, you can stand with people with epilepsy on March 26 2012 is a great idea.  There are more ideas at epilepsyqueensland.com.au. Personally, I have asked all my support workers, family, friends and Facebook friends to wear purple on March 26, 2012. I have download posters from the epilepsy Queensland website, purchased a purple Epilepsy Action T-shirt, download an email signature and I am sell purple day merchandise on behalf of Epilepsy Queensland. The best way to get involve is to head to these websites, http://www.epilepsyqueensland.com.au/site/purpleday; http://www.purpleday.org/ and http://www.epilepsy.org.au/purpleday. You can contract me on Facebook to purchase your purple day gear! 

Life! It's Worth Talking About!

For now I am cloth in an earthly tenth, it withers and fades as the years past.  As a Christian I believe my body came with a use by date.  It is not mine to keep.  The bible tells us that our days on earth a numbered and recorded in the book of life.  From the time we are born our bodies are in a constant start of decay.

However, if you read my previous blog post you will know I also believe we are made by design.  The rate and they way our bodies are decaying is unqic to us as individuals.  The rate of the breakdown of each individual organ is different too.  Most of us reach the end of our earthly lives with all our organs intact.

But not everyone is that fortunate, some individual body’s long out live the vital organs such as the heart, lungs, liver and kidneys.  Yet these organs are the life system of the body, we can live without an arm or an eye, but not a heart.  These are organs of life.

The irony is sometimes through tragic circumstances these organ are in perfect working order when the soul which is clothed in this earthly tent is destroyed.  In most cases families turn off life support machines and perfectly healthy organs are disposed of with the rest of the earthly remains.

At this point I am aware my post is sounding cold and clinical, but as a Christian the use of our bodies is tempory. Human life is more than the flesh and blood we are born with.  The bible calls this our earthly tent. 2 Corinthians 5: 1 – 3, is clear 

“For we know that if the earthly tent we live in is destroyed, we have a building from God, an eternal house in heaven, not built of human hands. Meanwhile we groan, longing to be clothed instead with our heavenly dwelling because when we are clothed, we will not be found naked.

As individuals we consist of body mind and spirit, I believe upon our death the first two components are left behind as our corpse and the third lives only.  As someone who daily struggles with the limitations of disabilities, I look forward with eager anpartispation to my new heavenly body.

It is a sad reality that at any one time there are 1600 people on the transplant waiting list at any one time and Australia has one of the lowest organ donation rates in the Western world. Hundreds of Australians could be given the gift of life if we took the time to learn about the process of organ donation and take about the issues, communicating to love ones our wishes should the unimagable occur.

This is not talking about death, but rather talking about life and isn’t that work talking about. This week is donate a life week many myths exist about organ donation Click here to learn more.  The website has great suggestions on how to discuss organ donation with your family, so this week Let’s Talk Life!  . 

The Gift of Life

Let's Talk About Life!

This week is donate life week.  On average there are 1600 Australians on transplant lists

at any one time, only about one in four receive a successful transplants. It is really encouraging

to see the rate of organ donations increasing, but through talking with each out

and sharing our thoughts and wishes, if terrible tragic circumstances arise then in 

the grieving process you know organ donation is the one answer you can answer. 

When a love one is suddenly killed you can already had the hardest conversation 

you ever need to have. Isn't it better to have this conversation now. 

No one likes to think about dying and death. So don't! So this week let's talk 

about life, by donating organ and organ tissue of a love one you can change

the lives of up to 10 people, really that's a great Legendary to have. 

If the time come will your family know what to say?

Or will the be struggling for answer in a difficult time.

   .  

  

Made By Designed

As a Christian I believe my birth and circumstance leading to my disabilities were not the result of some random events that occurred on the 10 September 1968. Rather I was an individually designed by my heavenly father and I can with a special instruction book to help me developed and mature into the women of God, I am to day. Here’s what my instruction manual has to say about my birth.

For you created my inmost being; you knit me tother in my mother’s womb. I praise you because I am fearfully and wonderfully made; your eyes saw my unformed body; all the days ordained for me were written in your book before even one of them came into being. How precious to me are your thoughts Lord. ( extracts of ps 139)

The user guide that I was give with my broken body said the following about its use and the author.

Your precepts were laid before me, O Lord. Oh that I steadfast obey your laws. That I would not be put to shame, having considered all that you have commend me, Even if I were to laid in the dust, you would preserve my life, according to your word. You have caused to have understanding of your laws. I will meditate on your wonderful deeds and consider the way I take the steps of my life.  Your hands have formed me and given me understanding, that your love and compassion may order my life. Oh how I delight in your law, which lights a path for my feet to follow. (Rephrased for Psalm 119).   

Yet even many Christian refute my interpretation of Psalm 139. A perfect God creates perfectly. Which we are told in Genesis Chapter 1  God saw all that he had made and it was good. However, I argue that that is just the beginning of the story. All was perfect until the fall in Genesis Chapter 3. Since then when have lived in a fallen and corrupt world, any read of the Old Testament makes that clear.

I do not believe God finished creating on the seventh day Then God blessed the seventh day and mad it holy, because on it he rested form all the work of creating he had done. (Genesis 2:3) Did you read that he ‘rested’ he didn’t stop the work of creating. It is difficult to read Psalm 139 and believe God stop creating on day 7. I believe God is still creating today.  He creates each individual to be individuals, whether they acknowledge it all not.

So why if we are fearful and wonderful made in the imagine of God are we not perfect. Well have you ever followed a cake recipe? Is  every cake you make using that recipe the same or does the imagine look the same.  We are created from a perfect imagine and we are perfectly created, that is not the same as being created perfect person. I have no problem with being perfectly created with a disability. Am I am less perfectly created that a person who acquires disability during the course of there life?  I don’t believe the is any thing in the user’s guide to support that analysis. We were born by design each with our on imperfections of being created in a perfect imagine, I believe only the original being was perfect, we know not even the angels were created perfectly otherwise Satin would of never challenged God.

Being unwell this week has meant I have been reflecting on how individualised each of us really are. Despite being perfectly created our bodies are in a constant state of decay. Yet we each deteriorate at different rates, are affected by different aliments, need a variety of different drugs to treat the same illness.  When it comes to medicine there is not blue print contained in the users guides. Only suggestions, hints and guides, even the ever growing popular healings in the charismatic movement are individualised and not every one in the New Testament is healed.  Do we need any further proof that we are handcrafted designs than the fact we each require different responses as we decay.

I wear medical jewellery

Beware show you care!

In an emergency check patient for Medical ID

It could help save someone's life!  

A System in Crisis

Like the majority of Australians with disabilities and their families I am trapped in an endless circle I call “the funding masses”. I wonder how many others are out there struggling to make sense of the funding they’re trying to access. Let me tell you it isn't easy and the battle is constantly emotionally draining.  How does one convey to to the various departments the emotions attached to ‘jumping through the hoops' of the funding game.

Just to prove your eligible takes months and then the questions being eligible for what. Over the years I have discovered ‘eligibility’ can mean as little as an acknowledgement that you need assistance. For years the department of Disabilities Services Queensland acknowledge I am a significant risk in my own home if intervention via inhouse support does not occur, thus perhaps appropriately I was given a ‘priority one rating’.

What I soon learnt in a system that is critically under funding that even a ‘priority one rating' meant little and 10 years later, excuse me if I don’t hold my breath, I find myself back in the position I started only my support needs are three times as high from when I first applied.  So I wait again for a bucket of money that may or may not eventually arrive and I toughen up to survive like so many other Australians living with disabilities around Australia.

One way we survive is by accessing a pool of funding known as HACC or Home and Community Care for elderly people and younger people living with a disability in the community.  That is not aged or other residential care.

There is a lot of talk about supporting people in the community to enable them to live in their own homes and to choose their individual lifestyles, but the current funding systems (did you read that systems, we are not navigating one funding system but several depending on which state or territory you live in.) very much fails on there delivery.

My personal experience of HACC is frustrating; information is difficult to obtain; most of the funding I access, happened by accident – word of month and information gained by talking to people on the street.

It is only recently, because I was forced to again play the funding game that I stumbled on a guide to HACC service.  To me it would make more sense if services gave you the you the handbook when you many an initial enquiry. So one doesn’t finding themselves ten years down the track using an inappropriate service and left feeling trapped.

Currently I find myself entrapped by a bungled of red tape, under HACC there are no clear guidelines for service users, if seems open to interruption and the desecration of each provider and dependent on their individual service agreement with Home and Community Care. So ask three different people working within the sector and you literally get three different answers.

Currently under HACC people living independently in the community are lumped together,  despite there varying levels of needs.  HACC does not take into account the level of incompacity.  People of all ages are lumped together and in the struggle to provide basic care services do the best to offer everyone the basics. Knowing at best they often are putting a bandaid on an open wound that requires stitches.

To be able to offer quality care to individuals peoples need to have a sense that the are not fighting to access money design to meet the needs of people who are aging and service the opportunity to offer quality care to either people with a disability or the aged not offering gap services to both.  While their needs may look the same on the surface,  who those needs are meet require totally different operational procedures.

Currently, I access a service that predominately has clients over 65. As a young person active in mainstream activities my local community, no set service times makes it difficult to plan your day around.  

Family and friends wonder at the despair people with disabilities and their families face. There is no security under the current funding models.  Worst still it feels some funding systems pitch service and service and client against client.  People with disabilities are crying out for a system that at least puts everyone on a level playing field.

A system where every person with a disability regardless of where they live in Australia has at least the same potential to access the same funding pool.  A single funding body for all Australians would at least provide a level found ground. Whether improvements can be made, I remain sceptical. However, the situation can’t get much worst than the one we are currently faced with.