My Story Andrea

My name is Andrea. I am 42 years old. I live in Hamilton, New Zealand and I work as a Support Worker and Executive Secretary. I have Lupus and Arthritis.

Being treated as a hypochondriac as a child was so frustrating. Being out in the sun gave me such headaches, I remember even at Primary School, my mum telling me not to play out in the sun too long as I would get a headache. This kept happening for years. I loved cricket and softball but unfortunately when I played them I would get a headache, so avoided I them. Because I was slightly overweight the teachers would then label me as lazy.

When I turned 26 I got pregnant with my 3rd son. My arthritis (diagnosed when I was 18), took a turn for the worse and I was sent to the Specialist. He was a wonderful man that I remember with fondness. He was not snobby or snotty like many Specialists I had encountered. He had a great sense of humour, he knew what was wrong straight away, and blood tests confirmed my diagnosis of SLE (Systemic Lupus Erythematosus).

I just tell people I’m part Dracula.

My Midwife brought a book with her a couple of weeks later when I saw her. It that looked huge to read. I asked her about it and she said I was her first Lupus patient, so she thought she had better read up on it. The whole book was on Lupus. I was blown away and thought oh dear (not as politely).

I have been very lucky with my Lupus. It has not affected my inner organs yet and my new Specialist in Hamilton has reassured me that its likely it won’t. I am hugely affected by the sun though. Sun light can cause Lupus flares. I can’t be out in the sun for more than 10 minutes. I get overheated very easily (just had heat exhaustion recently and I needed to be hospitalised). I just tell people I’m part Dracula.

The most frustrating thing about it is people think that for me to lose weight should be easy. I walk every day. I choose a cooler time during the day. The Lupus makes me want to bang my head against a brick wall.

What helps me cope? I have a next door neighbour who not only also has Lupus but we both have ostomies as well, so talking to her is fantastic. Find a great doctor. I have a fantastic GP and a just as fantastic Specialist. My health has been at dangerous levels over the past 18 months and my medical team have been my sanity. Any other doctor makes me so frustrated that want to throw things at them. Find an exercise. I love swimming and most swimming facilities are fine about me having an ostomy and using their swimming pools.

Although I live with Lupus and Arthritis, the effects don’t stop me. When I’m well enough I work and live a normal life. In fact, until two years ago I lived without medication. However, now I am more than making up for those years!