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.

Joint Swelling and Juvenile Arthritis

People who don't have Juvenile Arthritis find it hard to understand what it is actually like having swollen joints. 

I am not only talking about the actually joint but what it does to my body.

To put it simply, it screws everything up.

Living with a hidden disease is hard as I've said many times before but what makes it harder is that you are trying hard and volunteering my life to supporting children living with Arthritis and my joints just keep getting in the way.

This is my third month of elbow swelling and this isn't unusual at all. What is unusual is that it's only happening in one joint. This is not normal but I'm very happy that this is the case currently.

When a joint in mu body swells up it first creates stiffness. Due to this stiffness that I have in my elbow currently I am unable to brush by hair or even wash my hair without funny head movements that lucky I'm the only one that can see. 

 With that stiffness becomes horrible pain. This pain isn't the sort of pain that you get with a paper cut or a broken bone, it's the sort of pain that NEVER LEAVES YOU ALONE!

It's always there and even with pain killers it still just doesn't leave!

If these two things stick around long enough along come the tiredness. My body at this stage is usually fighting against itself even more and getting really confused and my body just has enough and wants me to sleep ALL THE TIME.

With this tiredness like normal tiredness, you become "cranky" but what happens to me when that happens?

LUPUS! Yes the wonder other autoimmune disease that I have. 

Lupus kicks in and that is when it's very hard to control. (Read my other blog to learn more about my Lupus)

When I was a young child and living with swollen joints for most of the year I didn't suffer with Lupus as well. This is why being 22 years old and getting a swollen joint is worse, but I will always keep smiling and supporting children living with Arthritis.

Until next time,

Keep smiling as you never know whos day you'll brighten.

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.

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.

What is hard?

People think not having their morning coffee makes everything hard.
People also think having to catch the bus or train to work is hard too, but do you really know what is hard?
Having a disease that no one knows about.

When I say this it isn't because I don't think these things are hard as well, they just are particularity harder for me to do than everyone else. Well except the morning coffee part, I have pain killers for that.

People often ask me what the hardest part of having a hidden disease that impacts my life so much is?

I used to have to think about the answer but now since creating Kids Arthritis an organisation to support children and their families with Arthritis, my answer has now changed.

No brownie points for guessing what it might be now though.

Support

Everyday is just made harder by knowing the fact that I don't know anyone who suffers as badly as me who is also my age. All I want is for the children of this generation suffering with Arthritis to feel supported. We all need support in one way or another. Whether it be through death, break up or unwell times, everyone needs support but these amazing children especially.

I have made it my life goal to support these children and their families so they too can live a more pain free and happy life with fellow Arthritis suffers around them.

Until next time,

Just keep smiling, as you never know who's day you'll brighten.

The first time is always the hardest..

Hi Everyone,

"I am new to this type of thing and have spent a huge chunk of my life keeping everything that happens to me locked away inside with only a select few being allowed in."

When I read this above sentence on a new blog I think the person may have been through hard times experiencing depression or anxiety, but as I write that statement it is because of something that you may have never heard of before; that is Juvenile Arthritis.

Now what people don't understand about Arthritis is that it doesn't just affect your grandma or grandpa, in fact your newly born bundle of joy can get the crippling disease too.
This is me, one of the estimated 8,000 children in Australia with Arthritis.

So many people over my life have suggested writing a book or keeping a diary as what I have to deal with and experience everyday is unique and interesting in ways you can only start to imagine.
 I did neither, but the book may happen one day.

I have spent so long of my life just thinking that "no one will care", "no one will ever want to read my blog and listen to what I have to say" (well you're reading it now so thank you) and this is how so many other young people with Arthritis think.
This is due to lack of awareness that Kids Get Arthritis which then leads to lack of support that then leads to bullying when a child tries to speak up and you get the drift.

This is what I am changing.

If you want to know more and just can't wait until next week, you can get a head start and learn more about Arthritis in Children and the work I am doing with my own organisation, Kids Arthritis here: www.kidsarthritis.org

Until next week,

Just keep smiling, as you never know who's day you'll brighten.