Sunday, 19 November 2017

Project Arthur

There’s a bear with a white head and a furry brown body. He wears a blue shirt with Kids Arthritis on it and black pants. He has two big blue eyes and one massive smile. This is the very special Arthur the Kids Arthritis Bear.

Most of us have a toy from our childhood, mine is Arthur. Arthur and his massive smile would join me for hospital appointments and operations for my Juvenile Arthritis. When I’d enter a ward after an operation the smile on Arthur’s face would make the other children and nurses smile as well. He also gives the biggest cuddles that makes all the pain disappear.

This is why when I founded Australia's First and Leading organisation solely dedicated to supporting the 1 in 1000 children in Australia living with Juvenile Arthritis, Kids Arthritis. It was a no-brainer to make Arthur the cute, cuddly and official mascot of Kids Arthritis. Which is how he got his name: Arthur the Kids Arthritis Bear.

Arthur now brings smiles and offers hugs to children all over the world living with Juvenile Arthritis. So much so that now I’ve decided to turn Arthur into a heat pack and give every child in Australia living with Juvenile Arthritis their own Heat Pack Arthur by 2021. This will mean that now Arthur the Kids Arthritis Bear will be able give children living with Juvenile Arthritis a nice warm hug to relieve their pain.

There are no words to describe how incredible this feels that my favourite childhood bear is having the same impact it did on me, on other children living with Juvenile Arthritis. If you’d like to change a child’s life living with Juvenile Arthritis and give them a Heat Pack Arthur:

Loosing Sight..

At the beginning of 2017 I shared with you all about “The Day I Lost my Sight”. Through writing this about my blindness in my right eye due to my Juvenile Arthritis that began in my teenage years, many reached out to me and Kids Arthritis to share their stories and access support.

During October 2017 I visited my Opthamologist, had some scans of my eyes and this was all fine, but the result wasn’t.
Once again I was back in the big blue chair and on the screen were the images which had been taken.
What happened next, changed my life.

On the screen, I saw the scan of the back of my eye and what was showing were some tiny
‘bubbles’ in the left eye (my seeing eye). These bubbles aren’t friendly bubbles, they’re Macular Degeneration.

The look on the Opthamologist face said it all.

Surprised, upset and unsure of how this could come about. All the medical treatments are
supposed to prevent this from happening, but still it has occured.

But you know what I did in that moment. I didn’t get angry or upset. I thought about the 1 in
1000 children in Australia living with Juvenile Arthritis. About how much pain they’re in right now and everyday, thinking they’re the only ones living like this. I also thought how much they need someone like me who can stand up for them living with Juvenile Arthritis and Kids Arthritis tosupport them and show them that it’s going to be ok.

Medical professionals don’t know yet when my sight will disappear, but what I do know is that with your help we can ensure that more children living with Juvenile Arthritis, who could be going through this situation don’t need to do it alone.

National Juvenile Arthritis Month

“What does wearing blue mean to you?”

Is the question I’ve been asking children that live with Juvenile Arthritis over the past few months.

“Wearing blue means that people do care about the pain I’m in each day.”

“My friends can see that I’m not ashamed of living with Juvenile Arthritis.”

These are just two of the many answers I received.
Why was I asking children that live with Juvenile Arthritis this?
October is a very special month in many ways for myself. It’s the month Kids Arthritis celebrates its

 2nd birthday! The month we hold Australia’s Biggest and Bluest Night for Kids Arthritis, Arthur’s Big Blue Night, but it’s also National Juvenile Arthritis Awareness Month.
Blue is the colour of Kids Arthritis. It represents the courage and smiles that children living with the pain of Juvenile Arthritis have. This October I invite you to wear your favourite blue shirt, socks, jacket, dress, anything that’s blue to show that you support children living with Juvenile Arthritis.

It’s a simple thing you can do to support the 1 in 1000 children in Australia living with Juvenile Arthritis. I also encourage you to upload your blue outfit onto social media to show me, your friends and family online that you support children living with Juvenile Arthritis.

Now, what does the word ‘support’ mean when living with Juvenile Arthritis?

To me, a lifelong severe suffer of Juvenile Arthritis, it means that the people around me in my community, whether that be online or the Adelaide Hills. Want to be there and show that they care about the pain, stiffness, and isolation that children living with Juvenile Arthritis endure.

So, this October I invite you to wear something blue to show that you support children living with Juvenile Arthritis.

Wednesday, 9 August 2017

Winter and Juvenile Arthritis

“It’s cold.”
Is the usual beginning to conversations during winter, but a side to Juvenile Arthritis that many don’t know is how this weather effects our condition.

There are many different types of research done into weather and Arthritis. You only need to jump online to see, but there’s not much there in relation to Juvenile Arthritis and the weather. So I decided to undertake my own research through Kids Arthritis to see if I was the only one being effected this way.

“How does the weather affect your Juvenile Arthritis, Sarah?”

Is a question I’m asked when speaking at community groups or conferences about Juvenile Arthritis. The answer can sometimes surprise people. The weather plays a huge part in my condition. Each year until my 13th birthday I was admitted to hospital for surgery in September/October due to inflammation and pain in my joints that needed to be removed. The fact that it was the same time of year every year made me always wonder, 

“I’m sure I am not the only one.”

Turns out I’m not and through the research, I undertook through Kids Arthritis, I found that a high percentage of those I spoke with had the same issue.
The beginning of Winter is when the pain is most severe during Winter. Swelling appears and your reliance on medication to get through the day becomes more prominent. Once again, this isn’t just something that happens to me, it’s happening to a high percentage of children living with Juvenile Arthritis in Australia.

 If you ever meet a child or adult living with Juvenile Arthritis rather than asking them,

“How are you?”

Ask, “Do you have any pain today?”

This shows to us that you do care and want to know how we’re really feeling.

Monday, 3 July 2017

Life with One Eye

At the beginning of 2017 I wrote a post sharing, ‘The Day I Lost My Sight’. I thank those for their questions and words of support, but there was one question asked by many readers: 

“What’s it like living with vision in one eye?”

This is a common question I get asked, as it’s a problem that many may never have to experience.

In the beginning simple daily activities; reaching for a glass of water or shaking someone’s hand were a huge problem. This was due to the depth of field issue. My brain had to re wire itself in how it saw the world and how far away objects were. 

Time went by when driving at night become an issue. I hear from older adults that they give up driving due to feeling unsafe on the road or those car headlights are too bright. I was 20 years old and had to give this up, something I’d worked hard to gain that gave me independence, but had to give up due to something I had no control over, Juvenile Arthritis.

Another impact was that the world I see is darker than others as there’s only light entering one eye, rather than two. This means when in rooms with dimmed lighting it’s disorientating and I can become light headed and everything that’s part of that feeling.

By far the biggest impact has been the risk of the condition that caused this in the first place, Uveitis affecting my left eye. If and when this happens, no one knows and what effect it will have on my life we will see at the time. But I never let any of this hold me back from achieving my life mission: “To change the way the world views Arthritis.”

Monday, 5 June 2017

Juvenile Arthritis Life Hacks

I will never let my chronic illnesses stop me from living my life.

I'll always attend celebrations or meetings no matter how much pain I'm in or fatigued I am. 

Since founding Kids Arthritis I've received many messages full of questions from children, their families and carers who finally have somewhere and someone to turn to for support. 
Many of these questions have been in relation to my experiences living with Juvenile Arthritis among other chronic illnesses. 
This month I've created my list of Juvenile Arthritis Life Hacks.

Medication and health conditions list.
This is helpful for many reasons. If you're in an accident and medical help needs to know these quickly, hospital treatment stays or if you require care from someone at your home who needs to be aware of this. Keeping it on the fridge, car, bag or anywhere in easy reach is a essential I believe when living with a chronic illness.

Office Chair as a Wheelchair
You'll never think of it the same.

Lists, Lists, Lists
The thing with this though is that it has too be done the night before as the next morning your body could be riddled with pain and stiff joints that just don't want to move. Having a plan of action for the next day is always a positive thing to stay motivated and focused.

Finally, Asking for help.
I've placed it last as it's the one I want you to remember the most. Asking for help doesn't make you any less capable of that job or task. We all need a little help from time to time in our lives. Whether it's washing the dishes, catching a bus to work or simply needing a listening ear. We all need to help ourselves, but help others when they need it too. 

Monday, 1 May 2017

Flowers for Charity

We all know a person that loves their garden, they may even be you, but my mother loves her garden for a special reason.

As a child I remember each year she’d take up more and more room in our backyard to grow more flowers which for 21 years she has grown, bunched and sold on the Echunga Main Street for Juvenile Arthritis. She does this between ANZAC and Mother’s Day. During this there are many community members who come together and show their support not only for the work my mother is doing, but for the 1 in 1000 Children in Australia living with Juvenile Arthritis.

I remember one year spending part of this time in hospital for Juvenile Arthritis related surgeries, but it didn’t stop the community passion to help support Children living with Arthritis. While my mother spent time in hospital with me, the volunteers were at our home creating bunches of flowers, as they knew that I wasn’t the only one living like this and by them helping more people would learn about the condition.

Another story is about the many times throughout the years when it would rain just before Mother’s Day. Now my mother spends all year cutting, watering and pouring a whole heap of love into these flowers and when the week before Mother’s Day the rain comes and ruins her work, it’s a hard thing to watch.

I need to mention these aren’t any flowers, they’re the special Mother’s Day flower; Chrysanthemums. Their unique smell and bright colours they’re the perfect flower to give a special lady or person. If you need a reason to grab someone a gift or add some colour to your home, head through Echunga between ANZAC and Mother’s Day to show your support for the 1 in 1000 Children in Australia living with Juvenile Arthritis.