My Lupus Story

It all began with a rash on my cheeks. Just dry skin, I thought to myself, no biggie. Then came the low-grade fevers that weren’t bad enough to keep me away from work but wore me down. Some aches in my joints, but my husband could not do without the air-conditioning at night and I figured rheumatism came with age.

Well, I guessed wrong.

My wake-up call came on my son’s first trip to the beach. We had loads of fun in the sun but when we got home my body started itching, I had hives and my cheeks were really red. I decided to make a trip to the family clinic to grab some anti-histamine.  I saw the GP quickly but instead of sending me away with anti-histamines, he asked me “Do you have joint pains?” His next question was “How long have you had that rash on your face?” He then asked, “Have you heard of SLE? “ I was tempted to tell him uh… that’s one of our expressways isn’t it? But somehow I felt this wasn’t the time or place to joke, so I shook my head. He explained that SLE stands for systemic lupus erythematosus or lupus.  A condition where the immune system goes haywire and antibodies get a go at all cells; be they good or bad. I was asked to get some blood tests done and to return a week later for my results.

It was a terrible week waiting it out. As it turned out, my ANA was positive and the doctor arranged for me to see a rheumatologist the following week.

The first doctor I saw didn’t think it was lupus. Perhaps the rash had gotten better by then and the hair loss could be due to stress. He gave me an appointment to return in 6 months, but my symptoms got so bad I couldn’t hold a pen some days and I decided to get a second opinion. Another round of blood tests were done, and the results confirmed what I dreaded. I did indeed have lupus. The doctor went on to explain that there wasn’t a cure but with the right treatment lupus can be controlled and I could lead a normal life, albeit with a few adjustments.

And so my life with lupus started. I was put on a high dose of prednisolone, which helped suppress the antibodies so that they wouldn’t go “chomping” all my healthy tissues. I was given painkillers for my joint pain and an anti-malarial to reduce inflammation and control rashes. After 6 months I felt better; my joints didn’t hurt as much and I wasn’t as tired.

That was when I made the biggest mistake ever. I stopped taking my steroids. I went to work one morning and a colleague told me that my face was really red. I peeked in a mirror and for sure, even my ears were red! I jumped into a taxi to head to my rheumatologist’s clinic, but en route I felt feverish and my eyes became bloodshot.

By the time I reached the clinic my temperature was 40°C and I was so weak I had to be pushed in a wheelchair. I was diagnosed with a lupus flare and had to stay in hospital for almost a week and receive steroids by drip. That was one experience that I would never want to go through again, it took me almost 2 years to get my steroids back to the dose it was before the flare.

Fortunately, after some years I went into remission. It was then that I started considering having another child. My rheumatologist was supportive and explained that I could as long as I was closely monitored by her and an obstertrician who was experienced in dealing with high risk pregnancies.

We thought we’d leave it to fate but I did get pregnant. The first few months were worrying because of the risk of miscarriages but all went well. Haeley turned out to be a huge baby by any standards. She was a month early and weighed a hefty 4.2kg! She’s now 5 years old. Healthy, active and not afraid to speak her mind.

I’ve have been very lucky to have friends and family who have stood by me and been a pillar of strength throughout this period. My bosses and colleagues have been great (I am still working full time) and understanding.

So that’s my story. It’s been close to 10 years since I was diagnosed with lupus. I am writing this to shout out to all those diagnosed with lupus that with proper care, treatment and support, you CAN lead a normal life. I am living proof to that.

Author: Anna Lim