Pets and Juvenile Arthritis.

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.

The Beginning of a Changed World.

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. 

Needle Problems

If I had a dollar for every time I needed a needle jabbed somewhere into my skin. I would be living somewhere on a private island researching a cure for Arthritis.

No seriously, it really is that much.

Now I am not talking about just little tiny blood tests, I am talking about medication injections, infusions, transfusions, drips and the list goes on.

I have had so many jabs by a needle that now even for a simple blood test check up an anesthetist is required to get the needle in to get enough blood. I am also not talking about a normal needle that anyone over the age of 5 years old has, I'm talking about a tiny butterfly needle.

Here's a photo of one if you don't know.

It is quite a small needle that takes much longer than using a "adult needle" that is quite thick and much longer.

This is a sad thing to have happened to me. I'm only 22 years old and already am having vein problems. The nurses say I am a 22 year old with the veins of a 80 year old (Sarcastic Yay). The way I have been told to fix this is not to have any needles jabbed into me. 

Well this is impossible.

Another thing you may not know about me, is that I have never looked at a needle in my skin.

NEVER!

but that is a story for my next post.

Until next time,

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

It's the most wonderful time of the year!

"It's the most wonderful time of the year."

I think the above phrase should be changed to.

"It's the most painful and inflaming time of the year."

Why you ask?

In Australia Christmas Time is during summer. Our Summers reach a low of 28 degrees to a high of 42 degrees and higher. This sudden change in temperature every day activates my Arthritis and sends my inflammation sky high!

When I was a child and for 13 years in a row, this is the time of year I was admitted to hospital to have inflammation around my joints removed or a surgery to do with medication abuse and side effects. Most of the time it was for both and it would take me out of school for 4 to 5 days straight.

Now missing school is every child's wish, but for me. It never was. 

My wish was to be able to attend school so I could learn new and exciting things, but to also have the social aspect with my friends. 

As adults if we don't keep in contact with a person, we essentially loose them as a friend. This is what happens to a child with Arthritis. Due to pain, inflammation and stiffness. The child must go see a doctor which then leads to time away from school, which then leads to loss of social contact. That finally leads to a whole lot of problems which a child doesn't need in their lives.

These children just like me suffer every day in pain and stiffness which means they may find it hard to do every day things. This was the case for me around this time every year.

"What do you have swollen this year Sarah?" is what my friends always ask me.

Well this year it's quite exciting (please note my amazing sarcasm skills) my left elbow is quite warm, is much larger than my right one and it hurts so much that I just don't know how I managed to type this blog post. 

Except we all know how I managed to write this post. It is because no matter what time of the year it is, or how much pain I am in. I live for supporting children just like me living with Arthritis. As I always say; there's no point giving up because what I suffered with as a child would all be a waste.

Until next time,

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

There's more to Sarah

As you have read in other posts (if you haven't read any others, you now have to) I do more than just Kids Arthritis.

I come from a community minded family. For as long as I can remember Monday nights dad has always attended Country Fire Service volunteer meetings. Since I turned 17 years old and my Arthritis became easier to manage my mum has been volunteering with the elderly through community activities on a full time bases. My brother has always been apart of Country Fire Service Volunteer Cadets, so that one day he can be a volunteer like dad as well. 

Then there's me.

From the age of 12 years old I have volunteered with the local Kids Club. I first started as the dish washer then moved to not only becoming apart of the team but organising and running the games. These days I organise and present the story and help with craft creation all still part of the same team. This is something I have always enjoy as I love helping children grow and develop. I have done my days of childcare work and realised it just wasn't for me.

Life Bursts on Hills Radio is another passion and hobby of mine. When people ask what I do in my off time they are shocked that one of my hobbies is being on the radio. As I have mentioned before in another blog post. I find radio not only fun but rewarding, as I get to meet new people every week and hear a Burst of their Lives with the help of Matt.

I have fun every Monday transforming people's lives through health and fitness. If you have watched any of the Sarah Talks videos you will know all about this. 
When I was younger the physiotherapist would give me a new exercise sheet every monthly visit and ask the same question. 

"Will you do your exercises this month Sarah?"

My answer would always be.

"Yes, of course"

Why did I lie? Why couldn't I just tell her how I really felt?

Growing up in a world where people don't know that Children live with Arthritis is hard, so it was hard for me to speak up and tell her the reason why I wouldn't do my exercises. (Now you have to check out my videos to find the answer: www.youtube.com/pranks4kidsarthritis)

So from being a child who didn't enjoy exercise to someone who one day said;
"Mum can you please take me to become a Personal Trainer?"
Was a huge shock to everyone around me who know how bad my Arthritis really was.

Now I inspire my wonderful clients each week with the battles I went through just to be here, and for all of you who are now asking. Yes I do enjoy exercise, I now do it every morning just to unstiffen my joints for the rest of the day.

There is more to me than just 'That Girl with Arthritis' rather I am a women of all trades who loves just being helpful in my community.

Until next week,

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

This week Sarah is dairy intolerant.

This weeks post gets its name from Rhys from RawCutAU. This guy does so much for Kids living with Arthritis I swear he gets sick of my voice because of all the editing he does for the videos.

For the last couple of months when I have had my late morning dose of caffeine, all thanks to the reoccurring Lupus that just doesn't want to give me a break. I have felt quite sick afterwards and sometimes it wouldn't stay down, rather come back up again.

When you have Arthritis doctors sometimes can not give you an answer. You can spend hours having tests done to get back the results you knew you were going to get. After a life of wasting hours doing this, I now sometimes try to find out the matter before going to see a doctor.

On this occasion I knew that milk upset me but wasn't sure whether all dairy would have the same effect, so when my friends went out for pizza. I joined them to see how the dairy in pizza would effect me. Same reaction as the milk but this time it actually stayed inside me.
I tried different dairy and came to the conclusion that the Arthritis has changed my immune system once again and now Soy Milk is my best friend. 

As I do at Kids Arthritis we are open and share with one another what is going on in our lives. 
It was a Wednesday and it was filming day for #Pranks4KidsArthritis and Rhys was pouring coffees as he usually does. Before it came to mine I had to interrupt him and pour soy milk into mine rather than dairy milk. I explained to him the story I have just told you and this is how the title for this weeks post came about. 

Having Arthritis doesn't just effect your joints but sometimes your internal organs as well. All Arthritis medications are designed to alter the child's body to help it keep their disease under control. If you ever do experience any unusual feelings even if you don't have Arthritis, please speak with a doctor. I have had Arthritis long enough that if something isn't right, I will try and fix it within reason and then head to the doctor, because if I didn't I should live in a hospital.

So to Rhys who not only volunteers his time support Children living with Arthritis but to a dear friend who is a listening ear and a laughing companion, thank you for all that you do. You really are someone special.

Until next time,

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

What is Lupus?

The year was 2013 and it was my usual Rheumy, or Arthritis doctor to those who don't know the Arthritis lingo. It starts with a blood test that usually takes more than half an hour. This is because my veins are quite thin due to the thousands of times they have been broken because of infusions, operations and blood tests.

From here it's the wait to see the Rheumy and into her office I go.

Now I am referring to this particular appointment as this was when I was told I had an extra strand in my body that is known as Lupus in my case.

Up to this point I had experienced times of getting lost while out driving, feeling more tired than usual, random vomiting throughout the day and a rash all over my body that was made worse through sunlight. Now if you have any of these symptoms please do not assume that it's Lupus, please go see you local doctor.

This moment that the Rheumy informed me of yet another autoimmune disease was attacking my body, I did feel just a bit frustrated with the result but at the same time there was nothing I could do to fix it.

Now for those who don't know what Lupus is, I found an easy explanation on MedicalNewsToday.

Lupus is a chronic autoimmune disease in which the immune system produces antibodies to cells within the body leading to widespread inflammation and tissue damage.

Any part of the body can be affected by lupus as it has an array of clinical manifestations affecting the skin, joints, brain, lungs, kidneys, blood vessels and other internal organs.

When I am diagnosed with a new condition, which happens quite a lot these days. I ask as many questions as possible to the Rheumy and she refers me onto the internet for more information. Some of my favourite facts (sarcasm) about Lupus that I found online are:

- Lupus is an autoimmune disease that can be mild or life threatening.

- More than 90% of Lupus suffers are Women.

- Staying out of the sun is perhaps the most important thing to do.

What does make me furious is that my Lupus may have been prevented as it's believed to be medical induced. Which means the medication I may have once taken or take now have caused Lupus. 

Even though it's another disease I now have to live with everyday, I do have a life and this life may be short for me, but I am determined to live everyday to the full and to live it supporting other children like me with Arthritis.

Until next time.

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