It's in our nature to just give out advice, even if we don't fully understand what the other person is living through.
Throughout my life I've been given plenty of non professional advice from people just trying to help. I get it, you can't stand to see Little Sarah in pain, well guess what. There's nothing anyone can do about it, even myself.
Every child living with Juvenile Arthritis is different.
In the weekly #SupportMondays poll in the Australian First Online Support Group run by Kids Arthritis Australia, I asked parents and careers what was the best way to reduce their child's pain.
Number one answer. Medication.
Medication in 2016 is strong, toxic stuff, but you know most of the time it gives the relieve the body so badly needs. It might be overwhelming for the parent to hear all the side effects that come with the medication, but recent research has shown that with early strong medicaiton intervention the child's JIA could be better off later in life.
Second answer. Heat/Cold Packs.
Whether it's winter or summer a child living with Arthritis body needs to be at a good temperature (just like anyone elses). With the interaction of JIA and medication this can be a problem. Hot packs are also good for pain during winter and cold packs are great for sudden joint swelling.
Third answer. Good nutrition and exercise.
I know as an adult eating right and exercising can be hard, but for a child living with Arthritis sometimes and they might not even know it, can get medication cravings (yes another Sarah word).
When I was having Actemra, the craving I received after the infusion was salty foods and it became a tradition that I would cut up fresh potatoes and deep fry them and eat them with dinner that day. It just happened and I don't know why. Exercise can also be hard due to pain and stiffness, but with the help of your local physiotherapist this can be made easier.
Excess weight is bad for anyone, but if you live with Arthritis and you become over weight you place more stress on your already stressed out joints which creates more pain.
What other ways do you reduce pain?
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Living with severe Juvenile Arthritis has it's problems.
Never ending pain, stiffness that just doesn't go away, constant reliant on medication, I could go on..
Driving is one of those things that most people take for granted.
Need more milk or bread? Just jump in the car and drive to the shops.
Got to pick up your friends from the work function? Just jump in the car and pick them up.
In the above two scenarios I've mentioned two of the problems I have l have living with Juvenile Arthritis.
You can never just "jump in the car' to get something. If having Juvenile Arthritis was that easy you'd all want it. Especially at night time it's the hardest.
Driving to and from my weekly radio show is a problem I have especially during the winter months, as by the end of the show it's pitch black!
Living in a small country town doesn't make it any easier due to the lack of public transport, sorry, no public transport at hours that anyone would want to use it.
I'm very lucky to have some sight in my left eye and each time I drive I'm grateful for the privilege.
South Australia has the highest unemployment rate which makes it harder for those living with a hidden condition to gain employment.
I believe I was quite lucky when gaining my first job. I was a member at the gym and had spoken with the manager on a regular basis, but when it came to a second job. It was a whole different story.
I've been through the whole cold canvasing walking around and handing in my resume at every Arthritis friendly work place. Applying online and not getting anywhere.
When I would finally get invited for an interview I knew I had two choices.
1. Disclose my Juvenile Arthritis.
2 Keep it a secret and not disclose.
Everyone with a disability have this choice and is something that children who live with Juvenile Arthritis may one day have to face.
I choose each time to disclose.
Now you're thinking; well it shouldn't make any difference, but it does and disability discrimination happens. I've had to deal with it all my 22 years of living.
Those people who judge as I park my car in a disabled permit zone or those who wonder why I just walked out of the disabled toilet at a venue. This can be seen as disability discrimination in the community.
We all have choices and a young person living with Juvenile Arthritis doesn't just have to deal with the pain and stiffness of the disease, but the thought of gaining employment one day.
This is one of the reasons I began my own business in the health and fitness industry and eventually Kids Arthritis Australia. So that employers and employees will understand what Juvenile Arthritis is and how to support someone who lives with it.
Click here for more resources on this topic and feel free to get in contact regarding this as well. This is why Kids Arthritis Australia and I are here, to support children, their families and careers living with Juvenile Arthritis.
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.
I've always grown up surrounded by many different animals. From guinea pigs, rabbits, dogs to ducks and a pigeon who think they're chickens (that's a story for another time). The one thing that has always been apparent is how much a child's life with Juvenile Arthritis changes when animals are around.
From my own personal experiences and stories I've heard through beginning Kids Arthritis Australia, that animals as pets are very important to their condition.
We all know pets make us happier and have more active lives, but to a child with Arthritis this is what we really need.
When I was 7 years old Ebony, our beloved family pet dog passed away. We still had chickens, guinea pigs and rabbits, but without a dog my parents began to notice something different.
When Ebony was alive I would be more active. I'd take Ebony for short walks up and down the footpath of our house, sit on the floor with her and have a secret cuddle when the Arthritis pain was too much. Now without her this wasn't happening anymore, which meant less accidental active time. This lead to more Juvenile Arthritis joint flares, which meant more hospital visits and joint injections. Less motivation with more pain and no fluffy animal to cuddle.
We eventually found a dog who was trained and tame enough to join our family home. Her name, Ellie. Within the next few days there was a huge difference. There was more accidental active time, less inflammation joint activity and the overall feel of the house changed.
Jessie (little white puppy) joined our family after a close friend passed away from Cancer and she wanted her bundle of joy in caring hands. We now have two dogs which anyone who has two or more dogs would know the fun you have.
You are now thinking about your own home and how a dog may impact positively on your life. From my experiences without a dog life would be different. Not only in an Arthritis sense, but companionship for everyone in the home. A dog will be happy no matter how you're feeling and will always be pleased to see you come home after a day away.
If this has got you thinking about adding a new fluffy, cuddly member to your family. Check out the RSPCA website and see if your perfect match is there.
Every year since birth to age 13 years I'd have to deal with the cold hard fact that I would have to have an operation of some sort, but would never know exactly what.
The operation would always happen around the beginning of Spring and my mother could always tell it was coming. I'd always feel fatigued during the day and have painful, swollen joints that would never go away. In the beginning I was too young to recognise what my body was doing to me, but as I got older it became a bigger and more annoying problem.
Through beginning Australia's First organisation, Kids Arthritis I have found that this also happens to other children all around the world.
Eventually the swelling would make my joints so stiff, swollen and painful that the only way to remove the problem temporarily was to have an operation.
I hated this so much, more than anyone could ever imagine. My horrible childhood memories are all from these times in hospital. Being forced by medical professionals to do certain things for my treatment and would hold me down and make the pain worse if I wouldn't do so.
This kind of treatment lead me to have a huge fear of the dreaded gas mask and instead would be first be sedated with a injection to feel 'relaxed' (it never worked). I then had a final injection to put me to sleep for the operation.
I can remember many times when this 'relaxed' injection didn't work and I had to deal with what the medical professional would do next, as they thought the injection worked.
Once the operation was over, I would wake up with Tweety, Arthur the Arthritis Bear and my mother by my side, and would full in and out of sleep of many hours to come.
I remember the first thing I would do once I'd woken up for the first time, would be to feel where the intravenous was in my body. Sometimes it was in my arms, others in my tiny Arthritis hands. I would then feel what the doctors had done during the operation. What arms, legs, wrists, elbows, etc were in plaster and if there was anything inserted into my nose or mouth for food, water or air. I'd then peacefully drift back to sleep once I knew what was going on.
Remember this really happens to Children who live with Arthritis. This happened every year and every time the procedure was different, but what stayed the same was that the Arthritis had made it happen.
The last time I had an operation was a couple of years ago and it was to remove swelling, stiffness and a bursa from my left elbow at the REPAT Hospital.
Once you've been grown up living like this, you don't expect anything different and this is a sad thing. To think that for the rest of my life I have to live with this disease that controls how my body feels and acts. Leading to operations and doctors appointments just like the ones written above.
No child should ever have to live like this.
www.kidsarthritis.org
This photo of Tahila cuddling Arthur the Arthritis Bear taken by the wonderful Kids Arthritis Media Man, Rhys. Reminds me of how that one moment that someone actually listened to me about my Juvenile Arthritis struggles, is now helping so many others just like me.
I had to create a movie looking back at how far not only Kids Arthritis had come in the past two years, but myself. From humble beginnings getting three supporters and myself around a table to discuss a way to create awareness. To a National Launch that attached not only local Identities, but community members from all over Australia together in one place. Not to mention a whole radio show on Hills Radio devoted to the world changing evening, with interviews from children, parents and community members all sharing in the cause.
We have now been named a fastest growing non for profit in our area. Offering more programs and holding more events in our first year of official operation than most other organisation of our age. This gives me great pride, as each day I awake no matter how much pain I'm in or fatigued I may be, to change the way the world views Arthritis.
To some this is a huge fate, but to me, it's my life and will always be my life. The children I come in contact everyday all have one thing in common besides living with Juvenile Arthritis, that is; SUPPORT.
Kids Arthritis is Australia's First organisation solely dedicated to supporting Children living with Arthritis. I know it's hard when you've lived an isolated life where you think no one understands about your child's disease, that someone or even a organisation out there really cares this much.
Well we do! We care about how your child feels, what's going on in their lives now and in the future. Not only that but, you as parents, grandparents and friends. What it feels like for you. Kids Arthritis Australia is here to help. We have parents, friends, children and professionals who live with Juvenile Arthritis everyday for you to talk to. We're all volunteers and are in it for you not for the money. We want to help and support children, their families and carers living with Juvenile Arthritis in any way possible.
If I read this ten or fifteen years ago, I would jump on the opportunity for a healthier and better life surrounded by others just like me, living just like me. If you're reading this now and know a child living with Juvenile Arthritis, please don't be ashamed to seek support from myself at Kids Arthritis Australia as we are here for you everyday.
Third answer. Good nutrition and exercise.
