My story with Rheumatoid Arthritis

I remember it so clearly, it was early 1994. On New Year’s Day I was admitted to hospital with chronic pain and inflammation after struggling with a steady decline in my health for 4 months. I was talking to an elderly woman, she was in a bed next to me at Monash Medical Centre. I was very ill and would be diagnosed with chronic Rheumatoid Arthritis (RA) during my 14 day stay in hospital.

Despite the months of chronic pain, an initial poor diagnosis, and very poor support from a Rheumatologist in Canberra (where I lived at the time), I never gave up hope of making a full recovery. I had a short conversation with the old woman affirming that indeed I would make a full recovery, and that I would never give up until I achieved full health again. The old woman was cynical, she said ‘we will see’. I offered her my contact details, they were declined.

Prior to my stay in hospital there were many things I could no longer do without assistance. I struggled to stand up from a seated position, putting on socks and shoes, and getting out of bed. I was staying at my mothers over Christmas while I waited for a hospital bed after a last minute appointment with a Rheumatologist on Christmas Eve. It was very late one night, everyone had gone to bed and I was left sitting in a lounge chair faced with spending a night right there. It was confronting. Eventually my mothers partner, realised the light was still on and came to my aid.

I was 31, in the very prime of my life when I was diagnosed with Rheumatoid Arthritis. I had a great day job in a little Italian Café in Canberra, I had just started cycling the 20km round trip to work when I experienced the first symptoms of pain in my ankles. I worked three hours a day to pay the bills, which allowed me to explore and work on my passion as an artist / gold and silversmith in my studio at Gorman House Arts Centre.

In hospital I was introduced to hydrotherapy (warm water exercise) with the support of a fabulous physiotherapist. It was at this point that I started healing, in the water. In the physiotherapy department I learnt to lie down, and to walk properly again. I remember in one session being assisted to lie down on my back. The tears flowed from the pain and the sheer shock of being horizontal again. For months I had been sleeping sitting up. My body had forgotten how to lie down. I never looked back.

I returned to Canberra a few weeks after my two-week stay at Monash. Always independent in thought and life, I was keen to continue my journey of recovery and recommence my life as an artist. I had the opportunity to attend physiotherapy and hydrotherapy in Canberra Hospital in Woden. Unfortunately the physiotherapist that assisted me there was not as positive as the physiotherapist at Monash. She actually said to me just accept that I had this disease, and choose a new career and that I would never be able to be a goldsmith again! Obviously narrow minded in her outlook this poor example of an allied health professional had no idea who she was talking too, not an inkling of the self determination and never give up attitude I have that keeps me strong to this day. How wrong some treating medical professionals can be with their outlook. Why they continue to work in the profession with attitudes like that is beyond my understanding, as they’re doing a disservice to all the people they are trying to assist.

As a goldsmith, who makes contemporary statement jewellery, I did become concerned when the disease finally made it to the joints in my hands; they were the last joints to be affected by the ravaging disease. Determined as I am though, I continued with my rehabilitation. At home each night on the sofa I would sit with a chopping board on my lap and squeeze and roll play dough, rebuilding the strength in my fingers, and preventing the finger curling you often see with RA, improving my flexibility.

After three months as an outpatient at Woden Hospital in Canberra I was told that it was all over; that there were other people who needed to occupy the pool and physiotherapy department, that my support had come to an end. I was still very weak and recovering. I had a long way to go, but sadly at that time the Canberra medical system was not set up to support public patients in the long-term. I had lived in Canberra for 12 years, I studied at Canberra School of Art now part of the Australian National University. My friends were there. What could I do? There were no public access hydrotherapy pools in Canberra at the time, so I made the decision to continue on the road to good health, and moved back to Melbourne where I grew up. In Melbourne I had access to several public warm water pools and attended a local pool three times a week to continue with my rehabilitation.

Today, I still do some of the exercises and stretches that I learnt at Monash Medical Centre all those years ago, but mostly I swim twice a week. I also walk twice a day, and kayak on the weekend when I’m not working in my studio.

I’ve achieved some great goals since being diagnosed, and continue to do so. As I wrote this article I was preparing for the Canadian Wilderness Artists Residency in July and August of 2017, canoeing with a bunch of artists down the Yukon River from Lac Laberge to Dawson City.

Since then I’ve been on a kayak expedition to Glacier Bay National Park in Alaska. Adventure has become an integral part of my life.

In 1999 I travelled solo to Ghana in West Africa for 6 weeks. To travel in West Africa it is necessary to be vaccinated against Yellow Fever and Typhoid. The Yellow Fever Vaccine is a live vaccine and for 5 weeks prior to having the vaccine I was required to cease taking the disease modifying anti-rheumatic drug that keeps me in remission. It was a shock when the week before I was due to depart my knee blew up like a football. Fortunately I have an excellent Rheumatologist who assisted me at short notice, which allowed me to start my six-week adventure as planned. Admittedly with a limp for the first week or so and then it settled down and I was back to normal as the medication began to assist me again.

Another and very important experience for me was in 2002 when I travelled to Mali in West Africa. Part of that experience was a trek 5 days through the Dogon escarpment. I was living a dream I had for 21 years from my studies into West African art and tribal body adornment at art school. It was not an easy journey; I hadn’t declared to anyone that I had RA for fear of being denied a place. I’d trained in the gym for months prior to leaving, but nothing can prepare you for the extreme heat when you’re actually out there, it was over 42º each day we trekked. Getting through the first day wasn’t the hardest, but it was a very emotional experience. Fortunately we’d trek early in the day and recommence after lunch and a restful break later in the afternoon when some of the force had gone out of the sun.

I think we are all truly capable of achieving our goals no matter how much is stacked against us. Unless I told you I had Rheumatoid Arthritis, I don’t believe that you would know. I have a hidden disability.

I never stopped goldsmithing during my rehabilitation. When I was ready to get back to work I received a grant for a year to assist me with my business plan to grow my small business. I had the financial support to continue with my goal towards making a living as a practicing artist.

I still work a day job today, a job that I have become almost as passionate about as my jewellery making. When I was ready to rejoin the work force I decided I’d like to make a difference in peoples lives and give back to the system that had been both kind and unkind to me as I pursued full health. I became an advocate for people with disability. I have a somewhat feisty nature, and enjoy the work that sees me inspiring and assisting others to achieve their goals. I’ve been in the same job now with the Disability Resources Centre Inc. (DRC) for over 17 years. DRC is also particularly unique in that it’s a member organisation made up of people with a disability, and all it’s employees are people with a disability.

I’ve chosen a path of positivity, rather than dwell on the suffering I endured in the initial stage of the disease as it ravaged my body. I believe it is the positive attitude that I maintain today, that has helped me to live the normal and fulfilling life that I do.

Photo by Yanni