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.

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.”

JIA and Me

Through Kids Arthritis I've been able to begin many life changing and Australian First Education and Support programs and events to the children, their families and children all over the world living with Juvenile Arthritis. 

This has only happened because of people just like you. Yes, you reading this blog but, what you're really doing is learning more about Juvenile Arthritis which now means you are now an advocate for this hidden yet common condition. 

There's one Australian First program that I'm really proud of. It's not our School Support Program or our Online Support Group. It's our Southern Support Group.

Why?

Well all I ever wanted and still want is to meet others living with Juvenile Arthritis, no matter their age or severity of the condition. Like thousands of others around the world, I just want to meet others like me. This is so I can share with them about my condition, my highs, lows and just know that someone else actually understands what I have to live with everyday!

I know I'm not alone as everyday I hear from children, their families and carers just looking to connect with others just like them. This is why Kids Arthritis Southern Support Group means so much to me.

What I would have given just to have a group like this growing up. I know it would have made a huge difference to my conditions.

If you're reading this and live with Juvenile Arthritis or know a family who does. Please invite them along to Kids Arthritis next FREE Support Group: www.facebook.com/events/241781209598283/

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. 

Little Red Dots

It's not the Juvenile Arthritis that impacts you the most, it's the side effects.

I've had and still live with many different side effects due to my Juvenile Arthritis.

Minor things like hair loss to extreme fatigue and Lupus, but the one everyone sees the most. Those little red dots.

What are those little things?

Well for starters they're far more itchier than mosquito bites and take 10 times longer to heal.

They get worse before they become better and are in the most annoying places. 

Two years ago I had a sample of one of these little dots taken. It was the most painful thing I'd had done to my skin awake. The result from that was medication side effect.

If you've read my previous posts you would know the only medication that can give me the relief I need currently is Meloxicam. A medication that's eating my stomach lining, but means I can walk. Factors like spending time in the sun (the tiniest amount), covering up my skin for extended periods of time (in winter) makes them worse. There's no way to get rid of them and covering them up makes it worse. 

There not only over my arms and back, but the part everyone looks everyday. FACE. 

With the power of make up the ones that aren't oozing or sticking out like Mount Everest can be covered up. As for those ones.. Cleaning my face twice a day, keeping my hands away while there's no make up on and drinking plenty of water, seems to do the trick. 

Living with Juvenile Arthritis is much more than just painful joints and taking medications. It's dealing with people judging you about something on your skin that you have no control over. 

20 Something Living with Arthritis.

When you were in your 20's what adventures did you get up to?

I'm sure some of them you'll share with your children, and there's others which you won't.

My adventures living in my 20's will be shared with them and are being shared with you right now through this blog. 

I googled Things to do in your 20's and realised that many of them are just too hard to accomplish when you live with Arthritis. 

The number one activity they suggest is travel.

As a kid I spend every school holiday at our family beach house and every winter one somewhere warmer in Australia, but never overseas. I've never been in a commercial plane or even overseas. 

Why is this?

When you live with an autoimmune disease you can be restricted by your medications. Live Vaccines are normally a NO GO ZONE, while the thought of having to stop taking my medication for around 8 months just to have a vaccine to travel overseas, to me doesn't seem worth it.

Of course some day I wish to travel, but for now I'm very happy changing lives through Kids Arthritis Australia.

The next thing on those lists is usually, Live on your Own.

How? How? How? Is a 20 something living with a crippling auto immune disease supposed to do that? This one is pretty self explanatory if you've read my other posts.

Reading all these I've created my own list of things for 20 somethings living with Juvenile Arthritis.

1. Listen to your body.

If it's feeling weak and you're feeling fatigued. Stop. It can be hard, but make time for yourself. Whether it's reading a book or enjoying a cuppa, make time for yourself.

2. Be honest to your doctors.

Yes, that's right. If you really did have a flare on the weekend or skip your medication last Wednesday. Tell them. Your honesty really matters when it comes to your health and well being.

3. Eat Healthy, but make sure you spoil yourself.

This advice comes from my Personal Training Business days. Our bodies always need good nutrition, but sometimes due to our medication we may crave salty fries or ice cream (this was my problem after infusions). Give yourself those foods, but only in moderation. 

4. You come First.

You always come first when living with Juvenile Arthritis, as self centered as that sounds it's true. If you're not feeling up to going shopping with your friend, tell them. If you're just to tired to attend a celebration at night, tell them. If you don't, they won't understand about your pain and Arthritis.

5. Create a support network around you.

Not everyone in their 20's living with JIA want to share their journey with everyone like myself, but it's important to find people to share it with. These people could be your mother, sister, support worker from an organisation (like myself), coworker, local minister, the list is endless. Just find a group of people you trust, because there's always people who care about you.

What's your advice for 20 somethings living with Juvenile Arthritis?

Share it on my Facebook. 

Growing Friends

Being a kid is hard.

Think of all those times you spent in the school yard, playing on the playground or attending friends birthday parties. What can you remember? 

I can remember attending many birthday celebrations. I remember being that kid who's mum stayed and helped out as you never knew when my Juvenile Arthritis would become painful or swollen. I never stayed at sleep overs or at the celebrations for long as it was always too much on my tiny Arthritis crippled body. This lead to friendships being hard to maintain.

Why was this?

Juvenile Arthritis. 

The only people I could trust that understood what was going on was my family. 
I was so afraid that I'd hurt myself or suddenly everything to be painful and no one would be there to help me. 

Being older and looking back, this is due to the lack of awareness there was and still is surrounding Juvenile Arthritis. Since beginning Kids Arthritis Australia I have learnt that I'm not the only one with the above problem. Children, their families and careers are hesitant to let go of their child living with Juvenile Arthritis as others don't understand what it's really like. 

Through Kids Arthritis Australia I will change this.

This is a National problem, that if not fixed will become worse in the future.

Being a kid is hard, but living with a hidden condition makes the easiest things in life, like attending your friends birthday party hard. 

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.

Pain and Juvenile Arthritis.

It's in our nature to just give out advice, even if we don't fully understand what the other person is living through. 

Throughout my life I've been given plenty of non professional advice from people just trying to help. I get it, you can't stand to see Little Sarah in pain, well guess what. There's nothing anyone can do about it, even myself. 

Every child living with Juvenile Arthritis is different. 

In the weekly #SupportMondays poll in the Australian First Online Support Group run by Kids Arthritis Australia, I asked parents and careers what was the best way to reduce their child's pain.

Number one answer. Medication.

Medication in 2016 is strong, toxic stuff, but you know most of the time it gives the relieve the body so badly needs. It might be overwhelming for the parent to hear all the side effects that come with the medication, but recent research has shown that with early strong medicaiton intervention the child's JIA could be better off later in life.

Second answer. Heat/Cold Packs.

Whether it's winter or summer a child living with Arthritis body needs to be at a good temperature (just like anyone elses). With the interaction of JIA and medication this can be a problem. Hot packs are also good for pain during winter and cold packs are great for sudden joint swelling.

Third answer. Good nutrition and exercise.

I know as an adult eating right and exercising can be hard, but for a child living with Arthritis sometimes and they might not even know it, can get medication cravings (yes another Sarah word).
When I was having Actemra, the craving I received after the infusion was salty foods and it became a tradition that I would cut up fresh potatoes and deep fry them and eat them with dinner that day. It just happened and I don't know why. Exercise can also be hard due to pain and stiffness, but with the help of your local physiotherapist this can be made easier.
Excess weight is bad for anyone, but if you live with Arthritis and you become over weight you place more stress on your already stressed out joints which creates more pain.

What other ways do you reduce pain?
Share it on Facebook.

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.

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 

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.