A Mutilated Body - Living with Rheumatoid Arthritis

A Mutilated Body: Introduction

I am 48 years old and live in South Africa, Gauteng Province. I have formally been diagnosed with Juvenile Idiopathic Rheumatoid Arthritis since the age of 6 years old.

I was one of the youngest, if not the youngest person diagnosed with the disease in 1979. It all started with my right knee being sore and the rest of my body also aching and being stiff when I got up in the morning. The GP my mother took me to, said I was pretending and probably didn't want to go to school. He could however never explained the amount of fluid building up in my right knee. He always just said it must be an injury so I just have to rest the knee. This went on for a while, until the inflammation in my body became so bad that I was running a fever of above 40 degrees Celsius. Finally he then let me get admitted to hospital and I was on strict bed rest for two weeks. His diagnosis was Rheumatic Fever - a common child illness.

Luckily my pediatrician was young and bright and when I didn't get better after two weeks he decided to test me for the Rheumatoid factor test and CRP (inflammation level in my body). It came back positive and the CRP was sky-high so he referred me to the only Rheumatologist in Pretoria at that stage, a professor and a doctor at the now Steve Biko Academic hospital. 

At first they didn't believe the pediatrician either since the disease mostly affected older people at that stage, but after a month of intensive blood tests every week, they realized he was right and I became one of the youngest patients ever if not the youngest.

At first I received Cortisone injections and oral cortisone, which worked but they both knew that, that would make my bones brittle and easy to break. At 7 years old I had my first Arthroscopy done and cartilage removed from my right knee. In those years (1980), you had a cast after the operation and I had to wear it for 6 weeks. That decreased my mobility in my right knee to only 90 degrees - it was never the same after that. No matter how many times I tried I could not get my right knee to bend more than 90 degrees.

After at least 7 more Biopsies and Arthroscopies, the right leg was replaced when I was 36 years old. Unfortunately even after that I still couldn't bend my leg more as the muscles never grew when I was a child to enable me to bend it more. Also the prosthetic knee's life expectancy is now almost over so I will have to go through a reconstruction operation again next year or the year after.

My left knee's symptoms started in about 1986. In the interim the professor and doctor discovered gold injections and pills instead of cortisone and even though the risk of kidney and liver failure was higher, I decided that I would take that risk and it helped a lot! Now South Africa doesn't produce enough gold anymore to make this medicine and apparently it is taken off all markets world wide because of the danger of kidney and liver failure. I had no side effects from it because I drink a lot of water so I filter my kidneys all the time. 

Unfortunately in 1987 when I was in grade 9 my whole body shut down again just like with the Rheumatic fever and I had to be in a wheelchair for 7 months. My high school was on a mountain and my classes were in three story buildings so I couldn't attend school. However I still passed with an 80% average. They finally got my CRP down again with multiple drugs and I slowly but surely recovered. By 22 years old my left knee had at least 3 Arthroscopies done, as well as the removal of the cartilage AND both my elbows started to give me trouble. By now I was at another private Rheumatologist and he kept me on the Gold but also gave me Cortisone injections into the elbows. My last bone density test showed that I had late phase Osteoarthritis everywhere on my body - even my skull.  I finally went into remission between 1995 and 2003. I lived a normal life and dived, bungy jumped, parasailed, travelled and lived in America for a year, swam for clubs both local and overseas. You can say I lived a very full and fulfilling life and I thank God everyday for those 8 years of piece. 

Unfortunately in 2003 the RA was back - this time with a vengeance! Nothing escaped it's wrath. It was my; shoulders, elbows, wrists, neck, spine, lower back, and both knees. In the next 10 years I would get 3 more Arthroscopies on my left knee, the replacement of my right knee, three shoulder operations - one on the left shoulder and two on the right shoulder. I had my baby with a C-section, had endometrioses removed, appendix bursts, had a breast lymph node removed after breast feeding to name a few. I was also diagnosed with Fibromyalgia and Psoriatic Arthritis in my nails. It was like I was  living in a nightmare - but the nightmare just continued....

Read to chapter three to get the full picture. The next chapter is all I know about the disease and treatments.