Tuesday, July 28, 2009
Stellan
I'll be back later with some more posts but for now I need to post a prayer request for Stellan a very sweet little guy with a whole bunch of heart issues who is fighting for his life right now. Please click the button and send your thoughts and prayers their way.
Sunday, July 19, 2009
Kyle
I write to you this morning with a heavy heart. Kyle has earned his angel wings. Although I expected it and I rejoice for him as he is free of pain I am heartbroken for his family. Please send your condolences to http://www.caringbridge.org/co/kylel/index.htm
Friday, July 17, 2009
Prayer Requests
Wednesday, July 15, 2009
The bus stops and the girl climbs on board. The girl doesn’t mind having to stand near the open window. She feels as if she might melt. Children cry as their ice-creams form a sticky puddle on their laps. An old man reads the newspaper. The women on the bus gossip about Bill and Monica. As time passes the other passengers loose interest in their conversations and begin to look around them. They all stare at the girl. Some smile. Some sneer. Others just continue to stare.
The journey continues. Passengers get off the bus. Passengers get on. It doesn’t matter. They all stare. Some even whisper to their friends. Still the girl stands silently. At times the comments get so loud and so rude that the girl wishes she could go and punch the people in the mouth. But she knows she can’t. She must be silent. Invisible. It makes her blood boil faster than lava, but she is helpless.
At the next stop the people that climb on the bus are friendly and start a conversation with the girl.
‘Hot today isn’t it?’
‘Yeah’ says the girl.
It has been too long for this. There are too many forgotten years. The girl just smiles at the people until the bus begins to slow. As the girl gets off the bus she overhears a conversation between two children.
‘That lady standing by the window looked funny’
‘I’m glad we ignored her, she scared me.’
That’s the story of my life thinks the girl as she walks away in her walking frame.
The girl in the story has Cerebral Palsy. Cerebral Palsy is a disorder of muscle control which results from some damage to part of the brain. It can affect people in many different ways, which can be both mental and physical or either mental or physical. For example, in my case my legs and my right arm are affected by the Cerebral Palsy but I am lucky and have not been affected mentally by the Cerebral Palsy. Others are not so lucky. They may be so severely affected by the Cerebral Palsy that they are unable to go to school or care for themselves in any way.
It doesn’t really matter how a person with Cerebral Palsy is affected by the disorder most people are treated by society in much the same way. (Having said this, however I do not mean that all people treat people with Cerebral Palsy this way.) Some people seem to think that a person with any kind of disability has a mental disability. This is a common assumption with Cerebral Palsy because more than half of the world’s Cerebral Palsy sufferers are affected mentally by the disorder.
However there are many organisations (such as Interchange and Yorralla) in Australia that can help sufferers of Cerebral palsy (or any other disability) to gain independence. These organisations can help people with many skills including personal care, shopping, and meal preparation and can also provide personal assistants who can help a disabled person to gain an education. The services these organisations provide are vital to the life of a disabled person because they enable the disabled person to have a “normal” life and attend school or work and also be involved in the community. To be considered “normal” by today’s society means to be accepted by today’s society. Acceptance is what we all crave and these organisation’s help a disabled person to gain some acceptance but there is a long way to go before total acceptance of a disabled person is achieved. This is illustrated by the reaction of the passengers on the bus when they realised the girl standing near the window was disabled. Not many of the passengers on the bus would talk to the girl who was standing by the window in her walking frame. The only people who would talk to the girl came on the bus towards the end of the journey and then had difficulty making conversation with the girl. If the girl was not disabled the passengers on the bus may not have had any trouble making conversation with the girl. The girl also had trouble making conversation with the other passengers on the bus. The fact that the narrator of the story suggests that “it has been too long for this. There are too many forgotten years.” Suggests that like many other disabled people the girl is so used to being treated badly that she does not know how to react when people are nice to her. These kinds of problems can make disabled people feel even more alienated from the rest of the world. The best way to overcome this problem is to educate the ‘normal’ people of the world in order to try and make them understand that disabled people are just people who may take a little longer than a ‘normal’ person to achieve some of their goals. If we can do this then maybe the ‘normal’ people will be more accepting of the disabled and then we can all live in harmony.
I would like to remind all the ‘normal’ people out there that it’s not what’s on the outside that counts but what’s on the inside. So as a final reminder from my pearls of wisdom as some great literary person said ‘don’t judge a book by its cover.’
The journey continues. Passengers get off the bus. Passengers get on. It doesn’t matter. They all stare. Some even whisper to their friends. Still the girl stands silently. At times the comments get so loud and so rude that the girl wishes she could go and punch the people in the mouth. But she knows she can’t. She must be silent. Invisible. It makes her blood boil faster than lava, but she is helpless.
At the next stop the people that climb on the bus are friendly and start a conversation with the girl.
‘Hot today isn’t it?’
‘Yeah’ says the girl.
It has been too long for this. There are too many forgotten years. The girl just smiles at the people until the bus begins to slow. As the girl gets off the bus she overhears a conversation between two children.
‘That lady standing by the window looked funny’
‘I’m glad we ignored her, she scared me.’
That’s the story of my life thinks the girl as she walks away in her walking frame.
The girl in the story has Cerebral Palsy. Cerebral Palsy is a disorder of muscle control which results from some damage to part of the brain. It can affect people in many different ways, which can be both mental and physical or either mental or physical. For example, in my case my legs and my right arm are affected by the Cerebral Palsy but I am lucky and have not been affected mentally by the Cerebral Palsy. Others are not so lucky. They may be so severely affected by the Cerebral Palsy that they are unable to go to school or care for themselves in any way.
It doesn’t really matter how a person with Cerebral Palsy is affected by the disorder most people are treated by society in much the same way. (Having said this, however I do not mean that all people treat people with Cerebral Palsy this way.) Some people seem to think that a person with any kind of disability has a mental disability. This is a common assumption with Cerebral Palsy because more than half of the world’s Cerebral Palsy sufferers are affected mentally by the disorder.
However there are many organisations (such as Interchange and Yorralla) in Australia that can help sufferers of Cerebral palsy (or any other disability) to gain independence. These organisations can help people with many skills including personal care, shopping, and meal preparation and can also provide personal assistants who can help a disabled person to gain an education. The services these organisations provide are vital to the life of a disabled person because they enable the disabled person to have a “normal” life and attend school or work and also be involved in the community. To be considered “normal” by today’s society means to be accepted by today’s society. Acceptance is what we all crave and these organisation’s help a disabled person to gain some acceptance but there is a long way to go before total acceptance of a disabled person is achieved. This is illustrated by the reaction of the passengers on the bus when they realised the girl standing near the window was disabled. Not many of the passengers on the bus would talk to the girl who was standing by the window in her walking frame. The only people who would talk to the girl came on the bus towards the end of the journey and then had difficulty making conversation with the girl. If the girl was not disabled the passengers on the bus may not have had any trouble making conversation with the girl. The girl also had trouble making conversation with the other passengers on the bus. The fact that the narrator of the story suggests that “it has been too long for this. There are too many forgotten years.” Suggests that like many other disabled people the girl is so used to being treated badly that she does not know how to react when people are nice to her. These kinds of problems can make disabled people feel even more alienated from the rest of the world. The best way to overcome this problem is to educate the ‘normal’ people of the world in order to try and make them understand that disabled people are just people who may take a little longer than a ‘normal’ person to achieve some of their goals. If we can do this then maybe the ‘normal’ people will be more accepting of the disabled and then we can all live in harmony.
I would like to remind all the ‘normal’ people out there that it’s not what’s on the outside that counts but what’s on the inside. So as a final reminder from my pearls of wisdom as some great literary person said ‘don’t judge a book by its cover.’
Thursday, July 9, 2009
Prayer request
Time to update about my appointment with my rheumatologist yesterday. My Vasculitis is definitely flaring up but we have a plan of how to treat it. The plan totally scares the crap out of me but it is a plan.
First the easy part- Doctor Boyden wants me to be admitted to Saint Vincent’s Hospital for Rehab and also to see the Rheumatology team there for a second opinion to make sure we are doing everything right. I am not sure when this will happen Doctor Boyden is going to talk to the Young Adults with Complex Disabilities clinic and will set everything up and get back to me. I am hoping it will happen soon and be a really short admission.
Now the scary part of the plan. He has put me on Methotrexate which is an oral type of chemotherapy. The side effects are many and scary and from what I have read and been told pretty much impossible to avoid. I am on 10mg weekly and will take the first dose tonight, I know that I can and will get through anything (especially with my angel friends watching over me) but I would appreciate your prayers all the same.
My Predisolone and lasix doses will be lowered. I will now be on 5mg of Predisolone and 40 mg of Lasix.
Today I had a whole bunch of blood work done that I needed to have done before starting the Methotrexate. Nothing much else exciting going on.
Love to all,
Karen
First the easy part- Doctor Boyden wants me to be admitted to Saint Vincent’s Hospital for Rehab and also to see the Rheumatology team there for a second opinion to make sure we are doing everything right. I am not sure when this will happen Doctor Boyden is going to talk to the Young Adults with Complex Disabilities clinic and will set everything up and get back to me. I am hoping it will happen soon and be a really short admission.
Now the scary part of the plan. He has put me on Methotrexate which is an oral type of chemotherapy. The side effects are many and scary and from what I have read and been told pretty much impossible to avoid. I am on 10mg weekly and will take the first dose tonight, I know that I can and will get through anything (especially with my angel friends watching over me) but I would appreciate your prayers all the same.
My Predisolone and lasix doses will be lowered. I will now be on 5mg of Predisolone and 40 mg of Lasix.
Today I had a whole bunch of blood work done that I needed to have done before starting the Methotrexate. Nothing much else exciting going on.
Love to all,
Karen
Monday, July 6, 2009
My creative process
One of my TAFE assignments is to talk about my creative process. I am struggling with it because I don't consciously set out to write most of the stuff I write. It just happens. Many of the poems I have posted on here are born because a line of them will pop into my head and they flow from there...
My only attempt at a novel so far was much like that too, but in that case little Jack Lawson appeared in my dreams and started telling me his story and then bugged me enough until I started writing it down. I am waiting for him to come back and tell me the rest.
Over the last couple of days I have started a new novel. The main character did the appear in my head thing too but this time I am using novel writing software to get down and organise my ideas. I am not sure how it is going to go but I'll keep you all posted if anyone is interested.
My only attempt at a novel so far was much like that too, but in that case little Jack Lawson appeared in my dreams and started telling me his story and then bugged me enough until I started writing it down. I am waiting for him to come back and tell me the rest.
Over the last couple of days I have started a new novel. The main character did the appear in my head thing too but this time I am using novel writing software to get down and organise my ideas. I am not sure how it is going to go but I'll keep you all posted if anyone is interested.
Edge II
She falls into the darkness,
Tears pouring down her face,
Broken hearted,
So over life yet still living,
You’ll recognise her as she walks down the street,
She’s the one who has forgotten how to smile,
Forgotten who she once was,
Just needs a hug.
So grimy and dirty,
Lost under many layers,
But one day the sun will break through,
She’ll become stronger,
And come into the light.
(c)Karen Peatt 2009
Tears pouring down her face,
Broken hearted,
So over life yet still living,
You’ll recognise her as she walks down the street,
She’s the one who has forgotten how to smile,
Forgotten who she once was,
Just needs a hug.
So grimy and dirty,
Lost under many layers,
But one day the sun will break through,
She’ll become stronger,
And come into the light.
(c)Karen Peatt 2009
Sunday, July 5, 2009
Sunday Grains of Gratitude........
This week I am grateful I could get an appointment with my rheumatologist. I am also grateful for pain killers and other medication in the meantime. I'm not doing well health wise and could really use prayers. I'm also grateful for time spent with friends and family.
Saturday, July 4, 2009
101 in 1001 update
In the past month I have completed the following 101 in 1001 goals.
68. Get private health insurance
94. join a book club
6. Drink 1 litre of water a day for a month (0/30)
31. Organise dvds
32. Organise cds
33. Volunteer somewhere
34. Go to on a holiday
41. Organise internet
77. Make a cv
78. Post stuff on fanstory
. Organise & pay for care each day
47. Get more fish
23. See ally and Sebastian again
This means I have completed 45/101 goals. I am happy with my progress so far. For reasons beyond my control the find a place to rent/buy goal isn’t practical at the moment so I will replace it with another goal and add it to future 101 in 1001 lists.
68. Get private health insurance
94. join a book club
6. Drink 1 litre of water a day for a month (0/30)
31. Organise dvds
32. Organise cds
33. Volunteer somewhere
34. Go to on a holiday
41. Organise internet
77. Make a cv
78. Post stuff on fanstory
. Organise & pay for care each day
47. Get more fish
23. See ally and Sebastian again
This means I have completed 45/101 goals. I am happy with my progress so far. For reasons beyond my control the find a place to rent/buy goal isn’t practical at the moment so I will replace it with another goal and add it to future 101 in 1001 lists.
My Darling Sara
My failing right hand,
Isn’t actually failing,
It’s just another body part,
That gets me to the bar.
It picks up a bottle,
Helps me chug that bottle down,
Til I forget where I’ve gotta go,
Or where I’ve been.
I thought I’d write this poem for you,
To show that I care,
Even though that last night,
You screamed I was never there.
We made love like pasta and sauce,
Messy but so true,
We were meant to be together,
me and you.
You told me faith means more than trying,
Sweat holds more value than tears,
But as you walked away,
You’re voice echoed through my fears.
“Once I believed you were the one,
Oh so strong & true,
Know I know you are weak,
And I’m not the one for you.”
That last fight sent me into a spin,
We shouldn’t fight while I’m driving,
My anger spun us into a tree,
Hurting you not so much me.
So now my darling Sara though
I said I’d never let you go,
I tried so hard but my right hand failed,
And I never felt you leave,
Oh my darling Sara, I love you so.
Isn’t actually failing,
It’s just another body part,
That gets me to the bar.
It picks up a bottle,
Helps me chug that bottle down,
Til I forget where I’ve gotta go,
Or where I’ve been.
I thought I’d write this poem for you,
To show that I care,
Even though that last night,
You screamed I was never there.
We made love like pasta and sauce,
Messy but so true,
We were meant to be together,
me and you.
You told me faith means more than trying,
Sweat holds more value than tears,
But as you walked away,
You’re voice echoed through my fears.
“Once I believed you were the one,
Oh so strong & true,
Know I know you are weak,
And I’m not the one for you.”
That last fight sent me into a spin,
We shouldn’t fight while I’m driving,
My anger spun us into a tree,
Hurting you not so much me.
So now my darling Sara though
I said I’d never let you go,
I tried so hard but my right hand failed,
And I never felt you leave,
Oh my darling Sara, I love you so.
Friday, July 3, 2009
Together and free
For you’re the one I’ve lost
The only one for me
You’re footprints stamped upon my heart
As you ran away
Like a flutterby with no wings
A piano with no tune
A moon with no stars
I’m lost without you
If you call, I’ll come
Just whisper on the wind
I’m there as fast as I can
Just as soon as your hand beckons
So I wait until I grow old
Saving my heart for you
Knowing one day we’ll be together
Even if only in my dreams
We’ll be the ones
Dancing on the stars
Fly to the moon
Together and free
(C) Karen Peatt 2009
The only one for me
You’re footprints stamped upon my heart
As you ran away
Like a flutterby with no wings
A piano with no tune
A moon with no stars
I’m lost without you
If you call, I’ll come
Just whisper on the wind
I’m there as fast as I can
Just as soon as your hand beckons
So I wait until I grow old
Saving my heart for you
Knowing one day we’ll be together
Even if only in my dreams
We’ll be the ones
Dancing on the stars
Fly to the moon
Together and free
(C) Karen Peatt 2009
Thursday, July 2, 2009
Kayden
Today is my nephew Kayden's first birthday. He has changed my life so much in just one short year. He's given me a chance to spend time with a small child (something I have never really done before) and given me something to focus on throughout some really dark days. Until Kayden was born I didn't realise I could love another human being so much. I guess I feel so close to Kayden because I will probably never have children of my own.
Kayden and I have a special relationship. He lights up when I enter a room and everything in my world is so much better when he is around. I hope one day he'll read this blog and realise how special he is to me.
Happy 1st birthday Gizmo!
The Pic is of me & kayden when he was 3 days old. I don't have a recent pic of us together.
Wednesday, July 1, 2009
inspiration
For me, as a person with disabilities its not so much about the fact that I signed up for a different destination, but it is about making the most of the opportunities that Holland offers me.
You see, seeing as I was born with some of my disabilities I have only known Holland. Perhaps, if I were to have experienced Italy before being taken onto a flight into Holland then my view of the world and my lot in life might be different. Having said that I can’t say I understand and accept everything in relation to being disabled and I am not like a few of my friends who say that they wouldn’t want to not be disabled.
I would love to be able to go for a run and feel the wind in my hair, I would love to be able to drive and even just to take the stairs one day instead of using the lift. I wonder what it is like to slow dance with someone you love? These are all relatively simple things that I’ll never get to experience and I am sure that if I didn’t have CP I would have experienced most, if not all, of them by now.
I have been called an inspiration many times throughout recent years (especially since I started my own websites) and I try to encourage people to make the best of their situations and not to worry about the things that they cannot change.
They say that what doesn’t kill you, makes you stronger and that God doesn’t give us more than we can handle and well, if that’s the case I can understand why some people might see me as a strong person but I’ll never understand why they see me as inspirational. You see, I am just doing the best I can to be true to myself and reach my dreams and if I manage to help other people along the way, then I guess that’s just the way it was supposed to happen.
You see, seeing as I was born with some of my disabilities I have only known Holland. Perhaps, if I were to have experienced Italy before being taken onto a flight into Holland then my view of the world and my lot in life might be different. Having said that I can’t say I understand and accept everything in relation to being disabled and I am not like a few of my friends who say that they wouldn’t want to not be disabled.
I would love to be able to go for a run and feel the wind in my hair, I would love to be able to drive and even just to take the stairs one day instead of using the lift. I wonder what it is like to slow dance with someone you love? These are all relatively simple things that I’ll never get to experience and I am sure that if I didn’t have CP I would have experienced most, if not all, of them by now.
I have been called an inspiration many times throughout recent years (especially since I started my own websites) and I try to encourage people to make the best of their situations and not to worry about the things that they cannot change.
They say that what doesn’t kill you, makes you stronger and that God doesn’t give us more than we can handle and well, if that’s the case I can understand why some people might see me as a strong person but I’ll never understand why they see me as inspirational. You see, I am just doing the best I can to be true to myself and reach my dreams and if I manage to help other people along the way, then I guess that’s just the way it was supposed to happen.
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