Joy Edwards' Story

What were the steps leading up to your diagnosis?

I first noticed an odd pulled muscle type of pain in my right groin around the age of 36. I had recently gone back to study after my divorce and was working as a Community Nurse. I provided care to older residents living in their own homes so was in and out of my car all day.

My doctor diagnosed a groin strain and told me to take it easy and prescribed anti-inflammatory medication. The pain persisted and spread down into my thigh and knee. I kept going back to the doctor and was told the same thing.

I was preparing to marry for the second time, we had bought a home together and I was overseeing its renovations, and I was utterly exhausted.

I went to a physiotherapist who told me something just wasn't right. X-rays on my spine showed degeneration and inverted scoliosis. After my wedding, I was watching the video taken of the ceremony and was shocked to see the way I was walking down the aisle. I had a distinct "roll" in my stride; I looked like I was in agony – I was – and was desperately trying to hide it.

I went back to my doctor and demanded more x-rays on my back and hips. The next day the results came in, and the x-rays showed my right hip was bone on bone.

My doctor told me I needed a hip replacement, but he also stated that "no surgeon would touch me with a ten-foot barge pole" because of my age. I was 38. He also told me to give up working as I would be in agony for the next 10 to 15 years before any surgeon would consider operating. I changed doctors that very day!

I sought the help of a private orthopedic specialist, who thankfully said he would do the surgery as I deserved to have my quality of life back. I had my right hip replaced six months later using a longer lasting ceramic prosthesis.

I was non-weight bearing for six weeks after surgery due to a femur fracture gained during the operation. My recovery was long, but I was pain-free. My left hip was replaced almost nine years later after again being misdiagnosed for many months. By the time it was picked up in x-rays, the joint has necrotized and collapsed.

I have since been diagnosed with osteophyte complex in my upper spine, bone spurs on both shoulders, osteoarthritis in both knees, ankles and thumbs, and severe disc degeneration in my lumbar spine. I have no fluid left between the discs in my lumbar spine and a pinched nerve stopping the movement of my left leg. I am now just 51 years old.

What lifestyle changes have you needed to make?

After my first hip replacement, my Orthopedic specialist told me I needed to change careers. I loved working as a Community Nurse, but it was just too difficult. I retrained as a phlebotomist and thought I would be able to continue in this profession until I retired.

After my second hip replacement, I applied for a job in the country and was asked to undergo a medical examination due to my bilateral hip replacements which had never hindered my work. I passed the medical but was refused the position as I was deemed a "high risk" by the Human Resources department of the company. I was devastated, and my confidence hit an all-time low.

A little later I discovered I had pinched nerves due to the osteophyte complex in my neck, reducing my capacity to feel with my fingers. So taking blood samples from patients was now impossible. I am now at University studying towards a Bachelor of Human Services aiming for a more sedentary job, in aged care or disability.

I have had to learn to listen to my body. If it is tired and sore, I rest. I know before I plan an outing I must consider the environment I will be in. Is there somewhere to sit? Will they be comfortable seats? I am unable to stand for long periods due to severe pins and needles in my left leg and the damage to my spine.

I have to invest in expensive but sturdy footwear. I take a lot of medications but am finally on a consistent pain management plan that is working well for me though I have moved to a new area and doctor who is trying to alter this and is met with a lot of resistance from me, I know best what works for me!

I do regular hydrotherapy classes which helps immensely. I can't lie in bed for hours, so sleep has to be restful and pain-free. My ice and heat packs are my best friends. Most of all, I am kind to myself.

What accomplishment are you proud of?

I am incredibly proud of everything I have achieved since my diagnosis. The fact that I have retrained three times to keep myself employable, the fact that I still wake up every day with a spring in my (painful) step and a wide smile on my face, the fact that I am still headstrong and independent are reasons to be proud.

I don't have a partner, so I do most things for myself. I study hard, and I am doing well. I have amazing, beautiful friends who accept my limitations and that sometimes I just can't join in if it means a late night or a week of pain and recovery and setbacks.

Who has been there for you? How?

My children and family have been my biggest source of support and encouragement. Without them, I'm not sure how I would have coped.

My mother has apologized needlessly, and she feels somewhat responsible for my condition for not recognizing issues when I was a child.

After many years of my asking why this happened to me at such a young age, my rheumatologist told me it was due to extreme hypermobility in all the joints in my body. Add to that, lots of steroid therapy as a child for severe asthma and more joints didn't have a chance! But the steroid medication was essential for keeping me alive, so I am not bitter or angry.

I find some people don't understand osteoarthritis in young people. I struggle with my weight, so that tends to be the first thing they attribute to my diagnosis. We are conditioned to assume if a person is overweight they are unhealthy. But my weight is a symptom of my condition, not a cause!

What's your advice to someone else living with Osteoarthritis?

Live each day as it comes. There is no shame in asking for help or saying no if you can't do something or know you will pay for it by being in agony afterward. However, keep in mind that you need to keep living. Enjoy life to the fullest develop your interests and pursue new hobbies.

I read a lot, love crossword puzzles and have developed a passion for mystery puzzle games on my computer. I volunteer, teaching technology and literacy to people with disability, which I love and keeps me engaged and learning. Develop your mind. Keep moving, learning, loving those around you and keep smiling through the pain!

Is there anything else we should know?

I am an incredibly positive person. I enjoy helping others and believe I have much to contribute to other people in a similar situation. I dream of having my own support group for people living with osteoarthritis where we offer a support network especially through first diagnosis and joint replacement surgery.

I would love to find my soul mate but am nervous about explaining my situation to a potential suitor it's a lot to absorb, and I am realistic in that I know some people will find my situation daunting.

I can't run, hike, rock climb and do all of the activities people take on later in life. Hopefully, I will find someone who will accept me for me, and that will be enough.