Karen's Story

I was diagnosed with Rheumatoid Arthritis (RA) at the age of 12. My family and I were in the highlands of Papua New Guinea at the time; my father was a Coffee Farmer on a plantation up there. It had been a really bad year for ill health; I had had Malaria, Dengue Fever and Appendicitis in about 6 months so my immune system had crashed. As there is no history of Arthritis in our family, I believe that these illnesses and their affect on my immune system is what triggered the RA. While the absolute cause is still “unknown”, I know of many others with similar stories.

As soon as I was diagnosed my family flew over to UK so I could be seen by Dr Barbara Ansel, who was considered to be a leading specialist in Rheumatology. Even so, my condition deteriorated rapidly and by the end of the year both ankles were fused, my wrists were seizing up and the main joints were quickly deteriorating. After a MUA on the ankles and rapid adjustments to my medical regime, we were given permission to “visit” Vanuatu, where my father was now working on a Coffee Plantation.

We had a 6 weeks holiday, during which time we realized that the UK was our furthest option and that we would be better to have Australia as a base for my ongoing treatment. Dr. Ansel agreed and stipulated that we should then use the Rheumatologists that she would recommend for us over “there”.

During our time in Vanuatu, we lived on an isolated island with minimal medical, educational and most modern facilities (i.e. electricity, telephones, TV etc). The island was just undergoing development so roads were coral surfaced and frequently became muddy clay ruts after cyclones (these ravaged the country sometimes up to four times a year). This meant that Land Rovers were the only form of transport. The nearest Rheumatologist or Physiotherapist was in Australia - two flights and 4 hours away.

We improvised on a lot of things, medically. The local hospital would oversee blood tests, ROM and general health, which meant a 45 minute drive over rough roads (very, very painful!!) once a week. My physiotherapy (hydrotherapy) was the ocean. Every week we would drive down to the beach (1 hour over unbelievable roads). Sometimes we even made the roads ourselves with some of the Ni Vanuatu helping to clear the way ahead of rocks and the fallen trees from cyclones, etc.

The ocean was probably the best thing for exercise. The motion helped with balance and strengthening muscles while the water provided support. Snorkeling was a favourite activity of mine and the flippers were the best! I loved those days we studied the ocean and animal habitat, monitoring each week the changes taking place in certain areas - in a sense we were marine biologists collecting and studying shells, sea creatures and rock formations that had taken place at the birth of the island.

As education was a problem, the six ex-patriots on the island took lessons in English, History, Geography, Mathematics, Biology and Science and the local villagers would teach us Society and Culture - theirs!

We also had an active volcano on the island where we frequently took people up to see. After a half hour climb and standing on the crater lip, you could view the most spectacular display of natural fireworks imaginable. Yasur Volcano is one of the most accessible cinder cone volcanoes in the world, so this too became a school project, monitoring the changes of the craters and lava-lake that was constantly moving.

After cyclones the changes would be more significant –the pattern of explosions and their intensity seemed to change per minute! Cyclones too were fascinating. Creatures are so much more sensitive to change and we would know long before the meteorologists that one was brewing just by watching the behavior of not only domestic but also wild animals too. When Hermit crabs the size of a football are found in the highlands 20kms from the nearest body of water, you just know there is a big one coming!

During this time my health unfortunately deteriorated. The teens of course being a terrible growth time and there being nothing one can do to slow it down. However, through medication, exercise and hope, the range of movement you can gain is significant enough to hold you until your twenties. I ended up spending nearly two years in Camperdown Children’s Hospital desperately trying to gain mobility through hours of physiotherapy (those therapists are absolute stars). My specialist at the time, Dr David Macauley, worked so hard to find treatments that would slow down the disease, finding break-through treatments via trial and error. He was an amazing researcher and I have a great deal to thank him for.

My condition became such that I was often forced to use a wheel chair, which I detested. I refused point blank to have one of my own, opting to walk, even if it took 10 minutes to walk 20 paces. I was determined not to succumb to physical aids.

By the time I was 19, my right hip had worn out and needed a total replacement. My left knee was replaced a year later and my left hip was done a year after that. After a terrible car accident in ‘95 and a near fall from a 30ft ladder after a major dislocation of the left hip prosthesis, I had to have a revision of the left hip. About two years later my left shoulder got an infection in the bone, resulting in a total shoulder replacement. Finally, well thus far, I had a total right knee replacement. I have been having trouble with the right shoulder for the last four years but even though it dislocates really badly, I’ve found ways to get it back in. Through exercise and muscle stretches I am prolonging the original joint as it rivals my left ankle for surgery. My medication is complicated. I’ve been on cortisone for 16 years and various anti-inflammatories including Arava, which has been my break through!

I continue to have a completely normal life. Absolutely nothing gets in my way of what I want to do, from sailing, scuba diving, camping, hiking, traveling to the most amazing places in the world (Africa, Asia, America, England, the Pacific (many times!), New Zealand and up and down the Australian coast) and flying. I never got my PPLs which I would absolutely LOVE to have done as I had a great deal to do with aviation, teaching kids the basics, assisting the curator of an aviation museum and the restoration team restoring on old war “ birds” (aircraft). I now run a small business in bookkeeping part time and teach the bible as a fulltime minister on a volunteer basis to those who are interested in knowing about everlasting life - a great passion of mine.

I am currently in the North Alaska for three months with my family who are working here. We live in a small town called Kotzebue, which is located 26kms north of the Arctic Circle and the population is largely Inupiaq Eskimos. Thus far I have seen the most beautiful views of icy mountain ranges, glaciers, the ocean totally frozen, wild life and the thawing of the tundra as we get closer to summer, white nights (missed the Auroras) and although I am a little late for the Husky Races (known as the Iditerod/ Kobuk 400 etc) I’ve had a go at ice fishing – I even caught a fish!

Although I have a serious and chronic medical condition that is deteriorating and I constantly have some degree of pain, I’ve never allowed it to stunt my lifestyle. My family has always encouraged me to try something even though it hurts and develop dreams, goals and NEVER EVER GIVE UP. Arthritis is a chronic and painful disease that can cripple you over night. It can sap our zeal and desire to do anything let alone live but if there is something we want or enjoy, for me it is creation, then work with our team of medics (they are there to help us and they work really hard at it for little thanks) and go for it, because the last thing we want is to be thirties plus, completely immobile, regretting we never did anything when we could have had the most incredible life.

Return to List of Stories

Disclaimer
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.

Copyright 2002 NSW Young Adults with Arthritis.
Site Developed by Leanne Way. All feedback to yawa@arthritisnsw.org.au