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.

Why does my Arthritis hurt in different weather?

I have recently stumbled across my new favourite science channel SciShow. 

Now before we go any further I do enjoy watching the occasional fluffy bunny eating a carrot video like the one below. www.youtube.com/watch?v=uDT4bHBtK4g

But if I'm really going to spend time trolling through YouTube I would rather learn something, and that's how I stumbled across these guys. Their videos are not only informative but the questions are asked by real people from all over the world. 

One of their videos was of most interest to me as they were speaking about a problem I live with daily. The changing weather and my Arthritis. You can watch it here: www.youtube.com/watch?v=86L4oRORREY

For years now I've known that the changing weather from hot to cold has played a part in why some days I can't move because of pain and others I'm free as a bird (sort of). I would have to be admitted to hospital during these cooler months for operations to remove Arthritis swelling and other procedures.

The video explains that our body genes can change expression or in other words turn on and off depending on the season. 

Researches in the UK and Germany studied over 16,000 peoples genomes, using blood and fat samples collected at different times throughout the year. Now if you didn't know there are different fats, proteins and other gooey stuff in our bodies that change throughout the year. This meant that 5,000 genes out of 23,000 genes were more active during cooler weather.

To put this all into practice they tried the study on Mice by using their ARNTL genomes, which suppresses inflammation. It turned out that during the winter months it was not suppressed, which meant that there was more active Arthritis during that time. 

If you want to know more about why your Arthritis may be different during different seasons please speak with your local doctor or Rheumy.

Needless to say I learnt a lot about my own disease in this video and it's great to know that someone out there is trying to find a cure for Arthritis.

Until next week,

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.