Introduction to my shitty disease

When I was in preschool I was diagnosed with Perthes Disease. From what I’ve read around one in 17,000 kids get Perthes, and of those 4 out of 5 are boys. Of all that get it only 7% get it in both hips. I was a girl that got it in both hips – lucky me! It meant that the ball of my hip joint was deteriorating, causing it to flatten instead of being round. When I was young this caused me a lot of pain, and the doctors monitored it but I never received any treatment (although my siblings took great pleasure in complaining about the special treatment I apparently received because of it!). Over time the pain lessened, and when I was about seven they stopped monitoring me, presumably because they thought I’d got better. I thought I was better too, and from that time on I had a pain-free childhood and adolescence doing all the normal kid stuff.

I moved to Auckland and began studying for a Bachelor of Communications with a Radio major at AUT. Then when I was 20 one of my hips started hurting again. I went through all the usual things, thinking I’d pulled a muscle or pinched a nerve, but when it still hurt a month later I went to the doctor, who ordered x-rays. The x-ray showed that my hips were still the wrong shape – the x-ray tech was even kind enough to let me know my hips were the worst she’d ever seen! They thought there might be an infection in my joint so I was sent to the ER and ended up in Auckland hospital for the next five days while they prodded and poked and scanned me. The heartless head of Orthopaedics casually told me that the Perthes caused me to have degenerative arthritis and I would just have to live with the constant chronic pain, and sent me home with a walking stick and codeine – his indefinite plan. At subsequent meetings he told me that I was simply too young to have a hip replacement (something I assured him I had no desire to have, but I had no desire to live in pain either) so he would be doing nothing.

When my pain continued and showed no signs of letting up six months later, I sought a second opinion in Christchurch. With my family here, it’s where I’d want to be for any surgery anyway. Paul Armour, too, was reluctant to replace my hip and sought other options. Consulting with other doctors, he looked into reconstruction and experimental surgeries, but in the end concluded that my hips were just too stuffed for any of it to work. All the while, my other hip was getting sorer, too. And I was getting angry, frustrated, depressed, anxious, and bloody sick of being medicated all the time. But I continued my studies and worked as much as I was able.

Now, 18 months later, I’m finally getting what I need. The hip replacement I was denied what seems like an eternity ago. I’ve put my studies on hold and moved home to Christchurch. On Monday I begin the journey. After I’ve recovered from this op my surgeon has agreed to do something about my other hip, too, so it’s a long road ahead but it will be worth it.

Things that are tops: Catching up with old friends, baking rhubarb cake, iPod on shuffle.

Things that a bit suck: Frosty Christchurch temperatures, 7am admission time.