Stacey's Story

My name is Stacey and I am 27. I was first diagnosed with Juvenile Rheumatoid Arthritis at a mere 18 months old so I have lived with Arthritis for 25 years now. I work casually as a Drug & Alcohol Field Officer. I grew up on The Central Coast NSW before moving to the Upper Hunter Valley with my partner.

It all started in my left thumb (funnily enough, you would never know that today) My Mother had kept a diary for every day of my first 15 years of this disease so I have a pretty good record of how things have progressed for me, from childhood through to adulthood. I will give you a brief overview of life so far………..

I was pretty fortunate to be treated from an early age from a highly ranked group of Rheumatologists at The Prince Of Wales Children’s Hospital, Sydney. As my arthritis was rare and puzzling at the time, I had been on every new and used medication you could throw at me. The specialists treated me with dissolvable Aspro Clear for the first 7-8 years of my life and from there on I was a guinea pig, trialing new medications as they hit the shelves. Some of the names are: Gold Injections, Voltaran, Methotrexate, Gold Tablets, Plaquenil, Nivaquine Syrup, Fergon, Diclofenac, Prednisone, D-Penamine - just to name a few.

At the age of 3, I seemed to go into remission for 2 years till the age of 5. I always wore splints on my legs and my wrists nightly, along with cold ice packs every morning for 10 years. On Friday 19th of November 1982 (age 5) a sample of my hair was sent to America for testing, that’s how baffled they were with my disease.

Throughout primary School (age 5-13) I always missed days at school, as I was sore and feeling pretty down. I participated in Girl Guides and my parents tried to keep my life as normal as possible. I never got involved in sports and that is probably the number one thing I missed doing as a child. Weekly visits to Gosford Hospital for physio was terrible for me as a child. Back then my main worry were my knees. They were constantly swollen and sore. Having a pool at home was help as swimming kept me active.

In 1996 (age 9) I was told if I didn’t learn to swollow tablets I would go into hospital for a period of time. I went through all the usual tricks, Mashed with honey on toast, in a sandwich! The thought of hospital changed my ways, and fast. To this day though, I still complain every night about tablets!!!!

From age 16 through to 27, I have been up and down (more ups) I continue to have regular blood tests, eye examinations, bone scans and occasional x-rays. I visit my rheumatologist 2 hours away at Kariong (worth the drive) and he keep’s a check on me a few times a year. I have never been a fan of exercise and always cop a wrap for not doing enough. I wear splints on my hands at night, as they are my main concern, and I wake in winter feeling a bit slow, but it doesn’t take long to warm me up.

My parents were continually warned not to let me ride a bike, jump on the trampoline or do anything active. Both my parents had documentation written on them, naming them bad and neglectful parents. It brings tears to my eyes to read that letter today as I feel if it wasn’t for my parents encouraging me to lead a normal and active lifestyle (along with specialist advice) then I fully believe I wouldn’t be walking today. I owe my life to them both.

I guess we all have our own advice on what’s best, but we are all individuals and no one person is ever the same. I feel a positive attitude and regular light exercise (from diagnosis) keeps your mind and body happy. We know our bodies better than anyone and if you feel well in yourself, then more than likely you’re doing the right thing. For me, pushing myself to walk on the bad days is crucial. Going to work when im sore is crucial. I refuse to let this disease rule my life. I am always free to talk to anyone that might just need a chat with someone that can relate.

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The information provided on this site should not replace the advice and guidance of your own health-care providers. All material is provided for educational and informational purposes only and is the opinion of the authors. Please check with your doctor before making any changes to your treatment.

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