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: www.kidsarthritis.org

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.”

20 Something Living with Arthritis.

When you were in your 20's what adventures did you get up to?

I'm sure some of them you'll share with your children, and there's others which you won't.

My adventures living in my 20's will be shared with them and are being shared with you right now through this blog. 

I googled Things to do in your 20's and realised that many of them are just too hard to accomplish when you live with Arthritis. 

The number one activity they suggest is travel.

As a kid I spend every school holiday at our family beach house and every winter one somewhere warmer in Australia, but never overseas. I've never been in a commercial plane or even overseas. 

Why is this?

When you live with an autoimmune disease you can be restricted by your medications. Live Vaccines are normally a NO GO ZONE, while the thought of having to stop taking my medication for around 8 months just to have a vaccine to travel overseas, to me doesn't seem worth it.

Of course some day I wish to travel, but for now I'm very happy changing lives through Kids Arthritis Australia.

The next thing on those lists is usually, Live on your Own.

How? How? How? Is a 20 something living with a crippling auto immune disease supposed to do that? This one is pretty self explanatory if you've read my other posts.

Reading all these I've created my own list of things for 20 somethings living with Juvenile Arthritis.

1. Listen to your body.

If it's feeling weak and you're feeling fatigued. Stop. It can be hard, but make time for yourself. Whether it's reading a book or enjoying a cuppa, make time for yourself.

2. Be honest to your doctors.

Yes, that's right. If you really did have a flare on the weekend or skip your medication last Wednesday. Tell them. Your honesty really matters when it comes to your health and well being.

3. Eat Healthy, but make sure you spoil yourself.

This advice comes from my Personal Training Business days. Our bodies always need good nutrition, but sometimes due to our medication we may crave salty fries or ice cream (this was my problem after infusions). Give yourself those foods, but only in moderation. 

4. You come First.

You always come first when living with Juvenile Arthritis, as self centered as that sounds it's true. If you're not feeling up to going shopping with your friend, tell them. If you're just to tired to attend a celebration at night, tell them. If you don't, they won't understand about your pain and Arthritis.

5. Create a support network around you.

Not everyone in their 20's living with JIA want to share their journey with everyone like myself, but it's important to find people to share it with. These people could be your mother, sister, support worker from an organisation (like myself), coworker, local minister, the list is endless. Just find a group of people you trust, because there's always people who care about you.

What's your advice for 20 somethings living with Juvenile Arthritis?

Share it on my Facebook. 

Fitness and Chronic Illness

What were you doing at 17 years of age?

Had you finished school? Were you dating your current partner? Annoying your siblings? or all of the above? 

At age 17 I asked my mother if she would take me to the Australian Institute of Fitness in Adelaide to apply for study.

This was a HUGE shock to my family, as I'd always despised exercise due to the pain of it all and the lack of motivation due to it. I could understand and control my Juvenile Arthritis more by this age and wanted to learn how to help others through health and fitness.

Sure enough we headed from the Adelaide Hills to the big smoke, hopped on the new Adelaide trams (for the Adelaide residents among you) and headed to the Institute. After a few hours we walked out and I was accepted to gain a Health and Fitness Qualification.

Due to completing Year 11 and 12 at the time, I had to take on the study as part of my SACE. This was a challenge as not only did I need to juggle school subjects, but this qualification and my Juvenile Arthritis. 

During the study there was many practical parts involving intense exercise, but I always managed to complete and pass just in my own little Sarah's Way. If you have a child living with Juvenile Arthritis, you know what I'm talking about. 

12 months later I was a qualified health and fitness specialist. 

At age 18 years my first job was at a local gym and from there I began my own business. This was a fun and rewarding experience. I met many people with different goals out of life and this was always the best part. People would come to me with all walks of life. I ran many weekly exercise classes, even one in a Pub. Many days were spent in my gym creating personalised programs and making memories with everyone who walked through the door.

Earlier this year it became a little too much running a small business (that wasn't quite small anymore) and a large national organisation. After 6 years in the industry I focused more on Kids Arthritis Australia.

People who have read my other posts would know that each day I exercise with heavy weights, as it's the most effective, natural way to help the Juvenile Arthritis stiffness and pain to cease for the day.

Don't get me wrong some days it's just too much to exercise, but you'll still find me battling on lifting those weights to make the day that little bit easier.