Arthritis and Time Travel

Let's go back in time. 12 months ago to be exact and take a look at what life was like at the end of my 21st year living with Juvenile Arthritis. 

Thanks for an Amazing 21st year!

I don't know about anyone else but on my birthday I not only enjoy celebrating the past year of my life, but thinking about all that I have achieved.

This year I was 21 years old and looking back, Wow I have achieved some pretty amazing things for someone of my age with my type of disability. 

Not only have I started an organisation that is dedicated to supporting Children living with Arthritis. 

I have also been successful in not needing an infusion every 4 weeks and a tablet every morning to stay alive, rather just the little yellow tablet.

Come into contact with some amazing KAWarriors who suffer with Arthritis everyday and who have been supported by Kids Arthritis (Yes you, Emily and Kristy!)

Organised and hosted my very own event, Big Blue Night in support of Kids Arthritis.

Began Life Bursts, a radio show every Wednesday from 4pm to 6pm on Hills Radio, with my wonderful other host Matt and had fun learning everything radio again from Crash!

Created hundreds upon hundreds on Facebook, Twitter and Instagram posts all in support of Kids Arthritis.

Raised over $3,000 in support of Children with Arthritis.

Taken way too many selfies on my SnapChat, some even ended up on instagram; www.instagram.com/kidsarthritis

Thought Bitstrips were cool and annoyed all my friends with them.

Consumed too many cups of lemon tea while eating fresh fruit with oats, I say fruit with oats as there's always more fruits than oats.

Celebrated birthdays and deaths of love ones this year (this includes my pet chickens and ducks).

Had fun #Pranking4KidsArthritis with Rhys from RawCut and spending too much time infront of the camera telling lame jokes. www.youtube.com/pranks4kidsarthritis

Helped so many amazing people achieve their health and fitness goals through my Health and lifestyle group and personal training not only in my home town but Adelaide too!

www.facebook.com/sarahfitnessechunga


and the most important one.

Learnt that others do really care about my story, my pains and how I want to support Children with Arthritis. Before this year it was so hard but I thank everyone who has been apart of my life this year because you have helped shape me and made me believe that I really can change the world through supporting other children just like me with Arthritis.

Until next time.

Keep Smiling as you never know who's day you'll brighten.

Some of the wonderful Ladies Only Morning Fitness Class.








Myself and Emily at The Ethelton Entertainers Peformance this year. www.facebook.com/EtheltonEntertainers

"Arthritis doesn't just effect the elderly, it effects children too..."
Me at Big Blue Night for Kids Arthritis this year.

I love bringing Bursts of Peoples lives to our listeners every Wednesday on Life Bursts with Matt.
It's one of the highlights of my busy week.

Biggest and Bluest Night in Australia

Arthur's Big Blue Night is Australia's Biggest and Bluest Night in support of the 1 in 1000 Children in Australia living with Arthritis.

It's a lot of work, no wait. It's a MASSIVE amount of work that goes into create this Big Blue Night for children living with Juvenile Arthritis.

Just like Kids Arthritis Australia everyone involved is a volunteer and the event is no different.
Volunteers or as we call them, KAVolunteers come from all over the country to volunteer their time for Kids Arthritis Australia. 

This year is very special as it is our second annual event and we are having LIVE local acts at the event! Local harpist and guitarists will join us this Saturday night. The biggest LIVE act is Katie, KAWarrior who battles Juvenile Arthritis will once again bring joy to all who attend through her piano. 

The yummiest part of the evening is all the delicious local produce that is served to all that attend. These delicious sausage rolls, cakes, sandwiches, everything you could ever image. Are made by local KAVolunteers for the guests to enjoy. You never go home hungry from a Kids Arthritis event!

Inspirational Speakers will grace the stage sharing their journeys battling Juvenile Arthritis and what it's really like living each day in pain. 

There's an auction, live music, fresh, local home baked food, inspiration and the Auctioning of the famous Kids Arthritis Quilt!

It's a night out for the whole family and it's happening THIS SATURDAY from 7pm!
If you can't attend but still want to make a donation, please head to the Kids Arthritis website.

I look forward to seeing you all on Saturday! 

How to Find Your Passion

I have always wanted to create change and awareness about Juvenile Arthritis. My mother and I spent many years of my life trying to create it but, it just never happened. 

My Uncle retired a few years ago from the job he spent 42 years doing. Each day he'd travel 3 hour trip to get to and from work. Why did he do it? Passion. He enjoyed his first and only job he did since finishing school all those years ago.


We all have passions. 

It could be creating delightful cakes for family, like my friend Tiffany.
You could love spending time modifying and creating your dream car, like my friend Brett does. 
Maybe you love the bus trip into work, the people who surround you in the space and what difference you make through the role you do, like so many of us do.

I spent many years searching for a way to do my passion.

When the suggestion of creating Australia's First organisation was talked about, it was always put down as 'too hard' by those who were supposed to be helping me.

While completing high school I tried to get ahead of the others and study Health and Fitness at an adult campus, while completing schooling. Once I finished school I was accepted to work at my local gym. From there I got another job at two local childcare centres, as I thought these were my two passions. I make it sound so easy to get these roles, but it wasn't. To learn more, read my other post about Disability Discrimination.

Turns out I was wrong and when it was time to lay off workers, I was the first to go.

After this I started my own Health and Fitness Business which I ran for a little over two years, before running a charity and business became too  much living with Juvenile Arthritis, which one of them had to go.

From that moment I was able to focus more on supporting Children living with Arthritis. I don't get paid for any of the work I do. If I speak at community groups, events, conferences, etc and receive a donation in return. It goes straight to the Australian First Support Groups that Kids Arthritis Australia run.

Each week I spend just over 30 hours changing the way the world views Arthritis, but why would I do this if there's no money value in return?

Passion.

Supporting the 1 in 1000 Children in Australia living with Juvenile Arthritis just like myself, is my Passion.

These children need support, their families, careers and siblings need support. They need help and awareness of this common yet hidden condition they battle everyday and who better to do this than someone who's battled it for her whole life.

What's your Passion? Let me know on Facebook.

www.kidsarthritis.org

What do I Ask the Doctor?

Since the invention of Google in September 4th 1998, people have been jumping online to self diagnose. 

This is incredibly risky and I don't recommend anyone do this. 

There's a reason doctors study for many years, so that they can treat you in the best possible way. Even though my life experiences with thee medical professionals haven't been the best, I owe my life to them. Without their knowledge and skills I wouldn't be here and you wouldn't be reading this. 

When a child is first diagnosed with Juvenile Arthritis there's so many questions racing through the heads of those involved. In this weeks post I have compiled through my experiences with JIA a list of questions to ask your health professional.

1. How will the Juvenile Arthritis be treated?

This one is the most important and should be asked first. There's many different methods and your doctor will know which one is best for the child.

2. How can the other symptoms be managed?

When your child has Juvenile Arthritis (JIA) there will be many symptoms that your child will show. Every child' JIA is different, so this question can only be answered by your doctor not, Doctor Google.

3. Is there any activities that my child do to relieve pain and swelling?

Exercise for anyone is important, but what's important here is that you are refereed to a physiotherapist or other health professional by your doctor to manage these conditions.

4. What causes JIA?

A common question that you can find a more in depth answer here. 

5. What if symptoms come back?

Symptoms may come and go when living with JIA, but having a trusting relationship with your doctor will make this easier. Stay in contact when ever you can with your doctor and seek advice from other support organisations.

6. Will my Child always live with JIA?

All my life I waited until I was 16 years old, as that was going to be the age my JIA would disappear. It didn't, but I still wait for the day it does disappear. Even if it does I'll still be left with the side effects. Every child is different, so keeping in contact with your doctor is most important.

7. What medicines might treat this condition?

There are many different medications available, but each one is different just like the children who require them. Some do sound 'scary' but, the one thing we do know is they can help. Once again your doctor know best and they'll know what is suitable for your child. 

Always remember there is now support out there for you. I began Kids Arthritis Australia as there was none when I was growing up with JIA. If I didn't begin the organisation, children their parents and careers would still be living like I did. Isolated and alone battling this hidden yet common condition. 

Little Red Dots

It's not the Juvenile Arthritis that impacts you the most, it's the side effects.

I've had and still live with many different side effects due to my Juvenile Arthritis.

Minor things like hair loss to extreme fatigue and Lupus, but the one everyone sees the most. Those little red dots.

What are those little things?

Well for starters they're far more itchier than mosquito bites and take 10 times longer to heal.

They get worse before they become better and are in the most annoying places. 

Two years ago I had a sample of one of these little dots taken. It was the most painful thing I'd had done to my skin awake. The result from that was medication side effect.

If you've read my previous posts you would know the only medication that can give me the relief I need currently is Meloxicam. A medication that's eating my stomach lining, but means I can walk. Factors like spending time in the sun (the tiniest amount), covering up my skin for extended periods of time (in winter) makes them worse. There's no way to get rid of them and covering them up makes it worse. 

There not only over my arms and back, but the part everyone looks everyday. FACE. 

With the power of make up the ones that aren't oozing or sticking out like Mount Everest can be covered up. As for those ones.. Cleaning my face twice a day, keeping my hands away while there's no make up on and drinking plenty of water, seems to do the trick. 

Living with Juvenile Arthritis is much more than just painful joints and taking medications. It's dealing with people judging you about something on your skin that you have no control over. 

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. 

That New Medication Face

I was recently sent an article titled 18 Things People With Autoimmune Diseases Want You to Know out of the 18 things this particular meme stood out for me.
Not only does the Meerkat appear to be on Prednisolone (Arthritis medication that can make you gain weight and become round in the face), but looking as if there's a glimmer of hope for the new medication. 

The face I used to create when my Rheumy informed me that yet another medication was available for trial, was somewhat different as I grew older. 

Much like the Meerkats face, there was some hope, but as I got older it became an annoying problem.

I know what you're thinking.

"but Sarah isn't a new medication a good idea?" 

Well reader, it can be. Sometimes you think.

"This is the one! The one that means I can be pain and side effect free for the rest of my life."

Other times, especially as I became older and could realise more about my condition it became more like.

Sarcasm "Great! A new medication which they know little about that will only help me for a short period of time and leave me with life long side effects."

You can tell how my view on the medical world and how I was treated changed as I became more aware of how it functioned.

Don't get me wrong. Some children just need one trial of medication and it works for life. What I say to those people is Well Done! I would just love to be that child.
Others like myself, are not so lucky. 

It was always a different medication around every 3 to 5 years. Yes this may seem like a long time, but remember I'm only 22 years old. 

The question you have now, is what medication am I currently on?
Well the best medication in Australia is unable to help me, so I've had to take a step back and consume a little tablet each day that's eating my stomach lining, but allows me to walk. Yes, you read that right. These are the kinds of sacrifices a child has to make who live with Arthritis. 

I know that there's children, parents and careers out there who are reading this right now and can understand how this feels, but to people reading this and learning about Juvenile Arthritis. Thank you for taking the time to learn more about this hidden yet common condition as it's people just like you, who will help change the way the world views Arthritis.