Steph's Story

I don’t remember most of my childhood as I was apparently in a lot of pain at the time. What I know of my early years with arthritis is what my mother has told me. So here’s the story so far….

The first indications of Arthritis came when I was 14 months old. I had pain and stiffness in my ankles that caused me to limp badly first thing in the morning. Initially this stiffness spread to my knees, wrists and elbows, but eventually all joints were affected. Over the next few months mum took me to the family doctor on many occasions to try and find out what was wrong with me. At first she was told that she was a neurotic first time mother and there was nothing wrong. Then they told her it was just growing pains. At 19 months old I was referred to a specialist orthopaedic surgeon who finally diagnosed me with having a form of JRA (Juvenile Rheumatoid Arthritis) called Still’s Disease. I was hospitalised for about a month while further investigations were carried out.

Over the next few months I visited the doctor on average once or twice a week. Over the next few years I experienced flare-ups lasting 6 weeks in duration roughly every three months. The symptoms of these flare-ups were: lack of appetite, irritability, painful hot swollen joints, very high nightly temperature spikes, immobility for some periods.

My arthritis was treated with drugs, physiotherapy and hydrotherapy. The drugs I was given over the first seven years included Aspirin, Penecillimine, Prednisone, Hydroxychloroquin, Brufen and Gold Iinjections. I had physiotherapy every day and I wore night splints on my wrists and legs and day splints on my wrists only. Like I said I don’t remember much of childhood but I can remember those awful splints and the gold injections. The night splints on my legs were used to attempt to keep my knees straight while I slept. They had a weight attached to the end of them at my feet which hung down over the end of the bed. I guess that was meant for added straightness. I hated them so much. Almost every night I would either wake up and take them off or do it in my sleep. It was extremely painful to sleep with my knees straight all night. The gold injections were a painful stab in the backside. A community nurse would come to my house in the mornings a couple of times a week and administer the injection before I went to school. For the rest of the day I would have a sore backside and it was quite uncomfortable to sit down. I wasn’t the biggest fan of physiotherapy either. The physio would stretch and pull my legs this way and that and I would yell ‘it hurts it hurts’. It all seemed like a never ending merry go round.

At the age of 5, I was again in hospital when one of the drugs I was given caused a reaction that resulted in liver failure. This time I was in hospital for an extended period of time and even managed a few days in intensive care.

I have had no flare-ups since I was 7 years old however I continued with physiotherapy until I went to high school.

When I started school I attended Broderick House, which is a school for disabled children. I was there from Kindergarten to Year 3. During Year 3 I was integrated into mainstream schooling 2 or 3 days a week to start with and then eventually full time. I managed to participate in mainstream schooling all the way through school without much trouble. That is to say I had no trouble attending the schools but dealing with other kids who didn’t have disabilities was a different thing. One thing I do remember from my childhood were the torments from other children. It was hard enough battling with my disease and pain let alone being constantly reminded by other children that I was different. I tried to ignore the comments like “hey cripple” and “you look like you’ve got a carrot stuck up your &%$#” But they weren’t the worst of the teasing. What got me most was when people attempted to imitate they way I walked. Children are so cruel. This sort of harassment continued right into my teenage years until I finally got sick of being picked on and began to give back as good as I got.

My teenage years were relatively pain free and I rarely suffered stiffness or swelling. However because of the damage to my joints I was unable to participate in many physical activities such as team sports that involved running or jumping. I found the best activities for me were swimming and bike riding. They allowed me to be active as well as maintaining a social link with my friends without having to play team sports. When you’re a child a disease like Arthritis can be so heartbreaking and disillusioning. You see your friends playing games and sports that you would love to be able to join in but you know you cant simply because you just cant run or because any hard knock or fall can be extremely painful. You really try to avoid any activity that might cause you to fall or be whacked.

Now that I am a bit older I have learned the value of keeping active, as difficult as that may be at times. I try to do regular exercise like walking, swimming and a bit of dancing to keep my joints flexible and my weight down. I’ve also recently discovered Yoga and Tai Chi. I have found that weight plays a huge part in managing my arthritis. The heavier you are the more strain is put on your joints and the more painful they get. I am not a huge person but every little bit helps.

I am now 30 years old. Although my JRA is no longer active I have been left with damaged joints and now have Osteoarthritis. My knees and hips are the worst affected joints and I have very little cartilage left in them. In May 2001 I had my left hip replaced. In January 2003 I had my right hip replaced. I lived relatively pain free through my teenage years and into my mid 20’s. It’s only been in the last 4 years that I have had the pain return through the onset of Osteoarthritis. When that pain began I had it 24 hours a day, only the degree varied. It started with my left hip becoming stiff, then painful. Gradually over the next few months my hip became so flexed I could not lie straight and could not lie on my stomach. Then I started to have pain in my lower back because of the way my pelvis was flexed. A year after the pain started I had to quit work because I could not walk from one end of the house to the other without being in severe pain. I could not do my shopping. I couldn’t even get a full nights sleep. Some nights I lay there for hours on end in agony and cried. No position was comfortable, no position would take away the pain. I was taking Celebrex for the pain. For the first few months this worked, but in the end nothing worked. That was when I had my first hip replacement. Even though I’ve had 2 hip replacements my knees still give me pain fairly often.

Like Natalie, I have never really known life without JRA. I have spent most of my life learning to accept my disability and the limitations it brings. Even now I have a hard time explaining it to people I meet. Sometimes I get sick of talking about it. I don’t like to dwell on it because it brings me down. Most people just look blankly and don’t know quite what to say once I’ve told them of my disability. The most they can say is “Oh but you’re so young.” Sometimes I get out of my car after parking in a disabled parking zone (displaying my disabled parking sticker) and I get glares and rude comments from people who think that because I’m young and I look relatively healthy and normal, there must be nothing wrong with me. Even my closest friends sometimes forget that I can’t stand or walk for long periods of time. Going to a club poses problems if there isn’t enough seating. I can’t walk around the city all day and I can’t go on treks through the bush.

Despite all this I consider myself lucky compared with many other people with arthritis. I have been through the worst of the disease and it burnt out when I was still quite young. Although I have always had limitations, and always will, I have managed to find ways to deal with these limitations. I am lucky to have my independence and be able to work and live a relatively normal life. The worst part has definitely been learning to accept who I am. If there is anything positive about having an awful disease like this its that it makes you stronger and more determined, and also a more compassionate person.

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