Life with One Eye

At the beginning of 2017 I wrote a post sharing, ‘The Day I Lost My Sight’. I thank those for their questions and words of support, but there was one question asked by many readers: 

“What’s it like living with vision in one eye?”

This is a common question I get asked, as it’s a problem that many may never have to experience.

In the beginning simple daily activities; reaching for a glass of water or shaking someone’s hand were a huge problem. This was due to the depth of field issue. My brain had to re wire itself in how it saw the world and how far away objects were. 

Time went by when driving at night become an issue. I hear from older adults that they give up driving due to feeling unsafe on the road or those car headlights are too bright. I was 20 years old and had to give this up, something I’d worked hard to gain that gave me independence, but had to give up due to something I had no control over, Juvenile Arthritis.

Another impact was that the world I see is darker than others as there’s only light entering one eye, rather than two. This means when in rooms with dimmed lighting it’s disorientating and I can become light headed and everything that’s part of that feeling.

By far the biggest impact has been the risk of the condition that caused this in the first place, Uveitis affecting my left eye. If and when this happens, no one knows and what effect it will have on my life we will see at the time. But I never let any of this hold me back from achieving my life mission: “To change the way the world views Arthritis.”

Juvenile Arthritis Life Hacks

I will never let my chronic illnesses stop me from living my life.

I'll always attend celebrations or meetings no matter how much pain I'm in or fatigued I am. 

Since founding Kids Arthritis I've received many messages full of questions from children, their families and carers who finally have somewhere and someone to turn to for support. 

Many of these questions have been in relation to my experiences living with Juvenile Arthritis among other chronic illnesses. 

This month I've created my list of Juvenile Arthritis Life Hacks.

Medication and health conditions list.
This is helpful for many reasons. If you're in an accident and medical help needs to know these quickly, hospital treatment stays or if you require care from someone at your home who needs to be aware of this. Keeping it on the fridge, car, bag or anywhere in easy reach is a essential I believe when living with a chronic illness.

Office Chair as a Wheelchair

You'll never think of it the same.

Lists, Lists, Lists

The thing with this though is that it has too be done the night before as the next morning your body could be riddled with pain and stiff joints that just don't want to move. Having a plan of action for the next day is always a positive thing to stay motivated and focused.

Finally, Asking for help.
I've placed it last as it's the one I want you to remember the most. Asking for help doesn't make you any less capable of that job or task. We all need a little help from time to time in our lives. Whether it's washing the dishes, catching a bus to work or simply needing a listening ear. We all need to help ourselves, but help others when they need it too. 

Arthritis and Time Travel

Let's go back in time. 12 months ago to be exact and take a look at what life was like at the end of my 21st year living with Juvenile Arthritis. 

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 to Find Your Passion

I have always wanted to create change and awareness about Juvenile Arthritis. My mother and I spent many years of my life trying to create it but, it just never happened. 

My Uncle retired a few years ago from the job he spent 42 years doing. Each day he'd travel 3 hour trip to get to and from work. Why did he do it? Passion. He enjoyed his first and only job he did since finishing school all those years ago.


We all have passions. 

It could be creating delightful cakes for family, like my friend Tiffany.
You could love spending time modifying and creating your dream car, like my friend Brett does. 
Maybe you love the bus trip into work, the people who surround you in the space and what difference you make through the role you do, like so many of us do.

I spent many years searching for a way to do my passion.

When the suggestion of creating Australia's First organisation was talked about, it was always put down as 'too hard' by those who were supposed to be helping me.

While completing high school I tried to get ahead of the others and study Health and Fitness at an adult campus, while completing schooling. Once I finished school I was accepted to work at my local gym. From there I got another job at two local childcare centres, as I thought these were my two passions. I make it sound so easy to get these roles, but it wasn't. To learn more, read my other post about Disability Discrimination.

Turns out I was wrong and when it was time to lay off workers, I was the first to go.

After this I started my own Health and Fitness Business which I ran for a little over two years, before running a charity and business became too  much living with Juvenile Arthritis, which one of them had to go.

From that moment I was able to focus more on supporting Children living with Arthritis. I don't get paid for any of the work I do. If I speak at community groups, events, conferences, etc and receive a donation in return. It goes straight to the Australian First Support Groups that Kids Arthritis Australia run.

Each week I spend just over 30 hours changing the way the world views Arthritis, but why would I do this if there's no money value in return?

Passion.

Supporting the 1 in 1000 Children in Australia living with Juvenile Arthritis just like myself, is my Passion.

These children need support, their families, careers and siblings need support. They need help and awareness of this common yet hidden condition they battle everyday and who better to do this than someone who's battled it for her whole life.

What's your Passion? Let me know on Facebook.

www.kidsarthritis.org

What do I Ask the Doctor?

Since the invention of Google in September 4th 1998, people have been jumping online to self diagnose. 

This is incredibly risky and I don't recommend anyone do this. 

There's a reason doctors study for many years, so that they can treat you in the best possible way. Even though my life experiences with thee medical professionals haven't been the best, I owe my life to them. Without their knowledge and skills I wouldn't be here and you wouldn't be reading this. 

When a child is first diagnosed with Juvenile Arthritis there's so many questions racing through the heads of those involved. In this weeks post I have compiled through my experiences with JIA a list of questions to ask your health professional.

1. How will the Juvenile Arthritis be treated?

This one is the most important and should be asked first. There's many different methods and your doctor will know which one is best for the child.

2. How can the other symptoms be managed?

When your child has Juvenile Arthritis (JIA) there will be many symptoms that your child will show. Every child' JIA is different, so this question can only be answered by your doctor not, Doctor Google.

3. Is there any activities that my child do to relieve pain and swelling?

Exercise for anyone is important, but what's important here is that you are refereed to a physiotherapist or other health professional by your doctor to manage these conditions.

4. What causes JIA?

A common question that you can find a more in depth answer here. 

5. What if symptoms come back?

Symptoms may come and go when living with JIA, but having a trusting relationship with your doctor will make this easier. Stay in contact when ever you can with your doctor and seek advice from other support organisations.

6. Will my Child always live with JIA?

All my life I waited until I was 16 years old, as that was going to be the age my JIA would disappear. It didn't, but I still wait for the day it does disappear. Even if it does I'll still be left with the side effects. Every child is different, so keeping in contact with your doctor is most important.

7. What medicines might treat this condition?

There are many different medications available, but each one is different just like the children who require them. Some do sound 'scary' but, the one thing we do know is they can help. Once again your doctor know best and they'll know what is suitable for your child. 

Always remember there is now support out there for you. I began Kids Arthritis Australia as there was none when I was growing up with JIA. If I didn't begin the organisation, children their parents and careers would still be living like I did. Isolated and alone battling this hidden yet common condition. 

That New Medication Face

I was recently sent an article titled 18 Things People With Autoimmune Diseases Want You to Know out of the 18 things this particular meme stood out for me.
Not only does the Meerkat appear to be on Prednisolone (Arthritis medication that can make you gain weight and become round in the face), but looking as if there's a glimmer of hope for the new medication. 

The face I used to create when my Rheumy informed me that yet another medication was available for trial, was somewhat different as I grew older. 

Much like the Meerkats face, there was some hope, but as I got older it became an annoying problem.

I know what you're thinking.

"but Sarah isn't a new medication a good idea?" 

Well reader, it can be. Sometimes you think.

"This is the one! The one that means I can be pain and side effect free for the rest of my life."

Other times, especially as I became older and could realise more about my condition it became more like.

Sarcasm "Great! A new medication which they know little about that will only help me for a short period of time and leave me with life long side effects."

You can tell how my view on the medical world and how I was treated changed as I became more aware of how it functioned.

Don't get me wrong. Some children just need one trial of medication and it works for life. What I say to those people is Well Done! I would just love to be that child.
Others like myself, are not so lucky. 

It was always a different medication around every 3 to 5 years. Yes this may seem like a long time, but remember I'm only 22 years old. 

The question you have now, is what medication am I currently on?
Well the best medication in Australia is unable to help me, so I've had to take a step back and consume a little tablet each day that's eating my stomach lining, but allows me to walk. Yes, you read that right. These are the kinds of sacrifices a child has to make who live with Arthritis. 

I know that there's children, parents and careers out there who are reading this right now and can understand how this feels, but to people reading this and learning about Juvenile Arthritis. Thank you for taking the time to learn more about this hidden yet common condition as it's people just like you, who will help change the way the world views Arthritis. 

Working and Juvenile Arthritis

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. 

Hospital Torment

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 

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.

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.