Maz’s Story living with arthritis

Published 21 April 2011, Posted in National

My parents started noticing that things weren’t quite right with me from as young as six months old. I was taken to the doctor but they couldn’t find anything wrong. At around a year old, I started “walking” (in a manner of speaking – on my knees), refusing to straighten my legs out to a normal position.

My legs ended up frozen in the bent position – they could not be straightened and I was in immense pain if anyone tried to touch them. A visiting pediatrician specialist from the US took me into surgery in Auckland Hospital and opened one of my legs up to have a look. Finally my parents got the diagnosis of rheumatoid arthritis when I was 18 months old.

The next few years of my life entailed many an operation. In order to straighten my legs, I was put to sleep and they were opened a little and a cast put on to keep them in place. Then a few weeks later, the whole thing again, until finally they were completely straightened. I had to wear special shoes and had physio. In order to stop them bending again, I had to sleep in the most uncomfortable splints that itched and made my skin peel off.

Unfortunately, the arthritis spread to my fingers, wrists, jaws, ankles and toes. But I was able to walk and do most things, so my childhood was fairly normal. I did get teased at school because of my “funny walk” and teachers were very unsympathetic forcing me to do detrimental physical activities because they thought my mother was over-protective of my disability and/or because they thought I was putting it on.

Luckily, with every growth spurt the effects of my arthritis seemed to diminish, and at around age 14, blood tests came back clearing me from arthritis. Great news! However, I live everyday with the damaging effects that the arthritis did to my joints. I have one leg slightly longer than the other and I struggle to bend my legs. I can’t kneel at all as it is very painful and my knee bones protrude and bruise from the inside out, I can’t bend my right thumb, and have little wrist flexibility in either hand.

I had extensive orthodontic treatment as the arthritis affected my jaw bones and teeth development, and consequently, I suffer from Tinnitus in my ears. I wear a special mouth piece at night to help with the jaw discomfort and my shoes cost more than $200 a pair (no heels allowed!). All in all, however, I am very lucky. Sure there are just some activities that I am never going to be able to do, but my life is normal, and for the most part, pain free. I know my own limits and am careful to maintain my joints’ health as best I can.

I work for NorthAble Disability Services, a charitable trust, servicing Northland (from Kaiwaka to the Cape and out to both coasts). I am a Disability Information Consultant.