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. 

Growing Friends

Being a kid is hard.

Think of all those times you spent in the school yard, playing on the playground or attending friends birthday parties. What can you remember? 

I can remember attending many birthday celebrations. I remember being that kid who's mum stayed and helped out as you never knew when my Juvenile Arthritis would become painful or swollen. I never stayed at sleep overs or at the celebrations for long as it was always too much on my tiny Arthritis crippled body. This lead to friendships being hard to maintain.

Why was this?

Juvenile Arthritis. 

The only people I could trust that understood what was going on was my family. 
I was so afraid that I'd hurt myself or suddenly everything to be painful and no one would be there to help me. 

Being older and looking back, this is due to the lack of awareness there was and still is surrounding Juvenile Arthritis. Since beginning Kids Arthritis Australia I have learnt that I'm not the only one with the above problem. Children, their families and careers are hesitant to let go of their child living with Juvenile Arthritis as others don't understand what it's really like. 

Through Kids Arthritis Australia I will change this.

This is a National problem, that if not fixed will become worse in the future.

Being a kid is hard, but living with a hidden condition makes the easiest things in life, like attending your friends birthday party hard. 

Alone and Full of Pain

Many people ask: How do I manage to undertake daily activities when there's nobody around to help me?

Well if you lived your whole life in pain and having to find other ways to do the 'simple' daily tasks, when you get older and can sometimes be alone during these times you find away very early on.

For example. I keep all my sneakers (don't like calling them running shoes, as I don't run) with the laces tied up for easy accessibility.  Socks on the other hand are much harder, If I need to wear socks for the day I have to ask someone before they head out for the day to do it for me. Besides sneakers and socks I have many shoes, like most females but they all have one thing in common. If I can't put them on alone, then I don't buy them. This is hard sometimes as I can see a pair of shoes in a store and just want to wear them, but know that due to my Juvenile Arthritis it's just not possible. 

Another problem is brushing my hair and teeth when my elbows are swollen up like balloons and are stiff as wood. This is where my opposite hand comes in handy. It may take a lot longer to undertake this simple task, but it has to be done.

As many of you know I used to attend swimming lessons every Tuesday. Since my Juvenile Arthritis hip problem that will never go away. Not sure what I'm talking about? Click here. Swimming is another activity that I find hard. My legs due to my right hip aren't strong enough to push me along in the water, so now if I'm swimming my arms have to do all the work. This has it's problems too, as my elbow and wrists joints then are more likely to become swollen.

I hope by now you have realised that nearly everything I undertake always has another effect. Sometimes good other times bad, but always related to my Juvenile Arthritis. 

People think that Arthritis only effects the elderly, which in fact it doesn't. 

People also think that Arthritis only effects your joints. It doesn't. 
There's a flow on effect that I have lived and will continue to live for the rest of my life. 

This is happening and happens to 1 in 1000 Children just like me in Australia. 

Got a burning question you just want to ask me? Please send me a message through Ask Sarah on the Kids Arthritis Australia website.