Loosing Sight..

At the beginning of 2017 I shared with you all about “The Day I Lost my Sight”. Through writing this about my blindness in my right eye due to my Juvenile Arthritis that began in my teenage years, many reached out to me and Kids Arthritis to share their stories and access support.

During October 2017 I visited my Opthamologist, had some scans of my eyes and this was all fine, but the result wasn’t.
Once again I was back in the big blue chair and on the screen were the images which had been taken.
What happened next, changed my life.

On the screen, I saw the scan of the back of my eye and what was showing were some tiny
‘bubbles’ in the left eye (my seeing eye). These bubbles aren’t friendly bubbles, they’re Macular Degeneration.

The look on the Opthamologist face said it all.

Surprised, upset and unsure of how this could come about. All the medical treatments are
supposed to prevent this from happening, but still it has occured.



But you know what I did in that moment. I didn’t get angry or upset. I thought about the 1 in
1000 children in Australia living with Juvenile Arthritis. About how much pain they’re in right now and everyday, thinking they’re the only ones living like this. I also thought how much they need someone like me who can stand up for them living with Juvenile Arthritis and Kids Arthritis tosupport them and show them that it’s going to be ok.

Medical professionals don’t know yet when my sight will disappear, but what I do know is that with your help we can ensure that more children living with Juvenile Arthritis, who could be going through this situation don’t need to do it alone.

National Juvenile Arthritis Month

“What does wearing blue mean to you?”

Is the question I’ve been asking children that live with Juvenile Arthritis over the past few months.

“Wearing blue means that people do care about the pain I’m in each day.”

“My friends can see that I’m not ashamed of living with Juvenile Arthritis.”

These are just two of the many answers I received.
Why was I asking children that live with Juvenile Arthritis this?
October is a very special month in many ways for myself. It’s the month Kids Arthritis celebrates its

 2nd birthday! The month we hold Australia’s Biggest and Bluest Night for Kids Arthritis, Arthur’s Big Blue Night, but it’s also National Juvenile Arthritis Awareness Month.
Blue is the colour of Kids Arthritis. It represents the courage and smiles that children living with the pain of Juvenile Arthritis have. This October I invite you to wear your favourite blue shirt, socks, jacket, dress, anything that’s blue to show that you support children living with Juvenile Arthritis.

It’s a simple thing you can do to support the 1 in 1000 children in Australia living with Juvenile Arthritis. I also encourage you to upload your blue outfit onto social media to show me, your friends and family online that you support children living with Juvenile Arthritis.

Now, what does the word ‘support’ mean when living with Juvenile Arthritis?

To me, a lifelong severe suffer of Juvenile Arthritis, it means that the people around me in my community, whether that be online or the Adelaide Hills. Want to be there and show that they care about the pain, stiffness, and isolation that children living with Juvenile Arthritis endure.

So, this October I invite you to wear something blue to show that you support children living with Juvenile Arthritis.

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.

Driving with Uveitis

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.

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. 

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.

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.

How was your morning?

Something that I get asked a lot is What's a typical morning for a Girl with Arthritis?
Every day is different but a typical day goes like this. 

Woken up by the birds in the trees and a pain in my right hip. Sometimes I can move it other times I just lie there waiting for it to decide what it's going to do. I feel it has a mind of its own but then I remember, I control that mind.

As many of you know I am blind in my right eye but have minimal vision in my left eye that requires a daily contact lens or glasses use. I prefer the contact as my eyes are too big and my face to small to find a pair that fit just right. The contacts go in and usually by then my hip has decided to move.

The Meloxicam pills are swallowed and the adventure to get clothed begins.

I like to keep the clothes I wear the next day fresh next to my bed so that if I'm in too much pain to do anything I don't have far to walk to get clothed. The part that annoys me the most are my socks and shoes. I have my shoes laces pre tired so that I don't have to rely on anyone else to tie them but the socks are the most difficult part. If no one is around to help then I have the 'Sarah Way' of getting them on. It does take more time so sometimes I ask my dogs for help (not really, but imagine if that could really happen) 

Once the PJs are away in the drawer next to my bed and the bed is made I head to the gym for my morning unstiffening aka workout as the normal people call it. 

During this 'workout' my key exercises I complete everyday to unstiffen myself are:
10 minutes on the exercise bike 
100 Squats at 60kg on a smith machine
80 Lat pull downs at 25.5kg 
60 Jack knives with a 10kg weight
60 Chin Ups 
40 Tricep dips 
80 Leg Press at 140kg
On days when I am not so stiff I do more (which isn't often)
You may be thinking WOW THIS IS A LOT! but you have to remember that I train very hard everyday because if I have strong muscles, I'll have strong bones which leads to a healthier life, hopefully.

From here I mix myself a fruit smoothie full of bananas, peaches and strawberries with a bowl of yummy oats. 

What is your morning like? Head to my Facebook page and please let me know. www.facebook.com/sarahhammondgirlwitharthritis 

Until next week,

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

What is Family?

I come from a small country town where everyone knows everybody and on the eve of my 22nd birthday I thought I'd tell you a bit more about my family.

When you internet search 'Family' the following appears from Wiki:
"In the context of human society, a family (from Latin: familia) is a group of people affiliated by consanguinity (by recognized birth), affinity (by marriage), or co-residence (as implied by the etymology of the English word "family"^[1]) and/or shared consumption (see nurture kinship). Members of the immediate family includes spouses, parents, brothers, sisters, sons and/or daughters."

Family to me is everyone I am close to, the people who you can just pop over and have a cuppa with at any time. The people you have over for lunch and dinner. Those people that sometimes you don't mind if they're still over when the party has finished.

With my 22nd birthday coming up next week I have invited my family to help celebrate with me in a way that we do best. Over a lovely meal cooked that will be cooked with love by my father.
My father makes the best Weekend pancakes in whatever shape you want and chocolate moose with sprinkles. 
My mother who is always looking out for me with my Arthritis and there to take me to any appointments that I need. My younger brother who helps me with any computer or programming problems and I know is up for a game of COD at any time. (Call of Duty for those who don't know). 
My Great Auntie who is sisters to my now deceased Grandmother, and creates the most delicious pavlova. My Uncle who loves working on the farm but always has time to recreate my grandmothers famous slow cooked rice pudding that we all love! 
My other Uncle who when he isn't out fishing brings us his freshest fish. My Auntie who always giving me the latest copy of her English magazines so I can catch up with all the latest English gossip. 

Finally my boyfriend, who I never thought I'd ever find. Who understands what pain and suffering I deal with everyday and still helps me smile. His wonderful mother and brother who accepted me into their family. 
There's more to my family like our next door neighbours who we spend Sunday Night Family dinners with and so many more in my little country town. 

Family to everyone is something different, full of different people of different ages but we all have something in common. That is that we all care for one another.

Until next week,

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