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. 

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