Juvenile Arthritis

Jewellery

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Scrolling through my facebook feed, I came across a question being asked in one of the business forums I am a part of. What jewellery do you wear? Simple question, but it pointed out the differences between myself and others without arthritic hands.

I am lucky that even though the arthritis is active in all my finger joints, my right thumb is the only one showing significant deformity. Due to the arthritic activity, I choose not to wear rings on my fingers as they become too uncomfortable when my fingers do swell and knowing me, I would take the ring off and leave it in a safe place somewhere, taking forever to remember where that safe place was.

When the arthritis first started in my hands when I was 6 or 7. I remember playing handball at school and striking the ball at an odd angle. The pain was significant and instant, as was the swelling. Not wanting to worry mum with something else, I didn’t tell her, instead I iced the joint and hoped it would be nothing more than a sprain. A few days later mum noticed the joint was swollen, I will never forget the look on her face. The look of fear mixed with devastation while trying not to show it. Not long after we were on a plane flying back to Perth for another round of steroid injections.

Not long after, the rheumatology team decided to splint my thumb so that it would fuse in a ‘functional position’. They have been successful to a degree, it stays out of the way, and the pain is no longer there. Both positives 🙂

As the arthritis has progressed I have found ways to alleviate the pain and I believe the deformity. My mum was adamant that I do activities that would maintain the dexterity in my finger joints. She bought me a nintendo playstation, my grade 5 teacher taught me cross stitch and I learnt how to strap the joints to allow them to rest until the flare had passed.

My physio when I was a kid mentioned a company called the silver ring splint company who make splints for fingers that look like jewellery. I never went down that road, but may look to do so in future. It’s handy to know that there are companies around that can make something such as hand splints look fashionable 🙂

But in answer to the question posted in the forum, I wear a watch (ICE watch in my favourite teal colour), a toe ring on my right foot and an anklet – also on my right foot.

I was often asked when I was at boarding school why I would wear a toe ring and the anklet on my right foot. I told them it was to reduce the embarrassment of the people that would stare at the deformities on my left foot. If they were caught looking, and they felt uncomfortable, I would strike up conversation about the toe ring, or the anklet, and it would often alleviate the awkwardness.

What jewellery do you wear?

Heartbreaking

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Scrolling through my Facebook newsfeed this morning I came across a story from http://www.everydayhealth.com about a little girl barely 18 months old showing the telltale signs of morning stiffness. My heart broke watching this and knowing there isn’t a cure. Thankfully she is responding well to methotrexate and enbrel, but it is still hard to watch. Hugs go out to this brave little one and her family. I hope the cure is just around the corner http://www.everydayhealth.com/news/a-toddlers-arthritis-pain-captured-on-video/

The Murdoch Children’s Research Institute

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Medications have come a long way in the 27 years since I was diagnosed with Juvenile Arthritis. For me, Enbrel was the best medication I have ever been prescribed. It gave me my life back and hope that a cure for this horrible disease will be found. The Murdoch Children’s Research Institute have a dedicated team of researchers who are working on several different projects at the moment. To view these projects please click here. If you would like to donate and assist the MCRI to continue their research please click here.

William’s Walk is Happening Today!

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William’s Walk is on Today! It’s still not too late to support Bayly and his friends. Please make a donation to Bayly’s fundraising page Bayly’s Bravehearts. All funds raised today go towards helping those fighting Juvenile Arthritis. Thank you in advance, have a great Sunday everyone 🙂
http://williamswalk.gofundraise.com.au/page/JoTurner0

Juvenile Arthritis on Studio 10

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Listening to this story on Channel 10 brought tears to my eyes. William was diagnosed with Systemic Juvenile Arthritis, a rare form of arthritis. William passed away from an infection related to his JIA at 6 years of age, one month before he was to fulfill his wish of visiting Dream World and Movie World on the Gold Coast. To view the story from Studio 10 please click on the following link. http://tenplay.com.au/channel-ten/studio-10/extra/season-2013/5-mar–juvenile-arthritis-studio-10-you.

His wonderful parents are keeping William’s memory alive by encouraging everyone to fundraise and participate in their event – William’s Walk which will be held at Parramatta Park on Sunday the 23rd March 2014. A friend of mine is Walking for William. If you can’t make it to Parramatta Park please support Bayly by donating. Bayly is another Juvenile Arthritis warrior and has shown amazing strength during his battle with the disease. Please click on the following link to go to Bayly’s page and show your support. http://williamswalk.gofundraise.com.au/page/JoTurner0#.UwV7ELuqrBw.facebook

Thank you.

Juvenile Arthritis Story in the Sunshine Coast Daily.

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I read a story in the Sunshine Coast daily about the increase in the number of children hospitalized with the diagnosis of Juvenile Arthritis. There was nothing in the article to suggest a cause for the rise in numbers. Further down in the comments section I read that someone had posted that the cause of the rise in numbers was due to fluoride being added to the water supply. I found this interesting, as I have read reports of scientists finding skeletal remains of children who had clearly been severely deformed by arthritis. This is long before any water they would have drunk containing fluoride. Instead would it not be more plausible to consider the possibility that more awareness about this condition has resulted in more accurate diagnosis of juvenile arthritis rather than misdiagnosis of growing pains, flat feet or whatever else was given to parents as a possible explanation? To view the article please click here.

Intro

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Hi, my name is Tara. Thank you for visiting my blog page! I hope you find the information interesting!

I was diagnosed with Juvenile Arthritis when I was three, it is for this reason that I’m trying to focus my attention on promoting awareness of JA. I was told many different things growing up by the different doctors that treated me, and the most common topic seemed to outline more of what I ‘couldn’t’ do rather than what I ‘could’. This mindset lead me to some deep dark places which I never wish to revisit.

I am forever grateful that my mum is such a positive person. She taught me that there is no such thing as can’t, telling me that if at first you don’t succeed, try it a different way. (Which is a good thing, otherwise I’d still have difficulty doing simple things such as brushing my teeth!).

For years I have struggled with pain, even on very bad days I force myself to go to work, (it’s a good thing really, going to work helps take my mind off the pain and allows me to concentrate on something else), however the constant grind of hospitality (as much as I love the industry) possibly isn’t doing me any favours, which is why I decided that starting my own business may be the better way to not only help others with disabilities, but also allow me to work my own hours, and really knuckle down and take control of the arthritis and not let the arthritis continue to control me.

My website EnableDisabled.com is an online directory which (when fully up and running) will allow people with disabilities, their carers and the frail aged, find services which are designed to help them.

I’ll keep you updated on the website’s progress! Thank you for reading 🙂