Introduction - Chapter 1 ~When I was diagnosed~

This shall be the introduction page of it all... the starting point of what makes me weird/special/unique/interesting/abnormal.

The normal way of introduction is always the usual name, age and where you're from.. so, I'll start from there.

Hi, my name is Sarah Kambali. I'm the eldest of two and I currently am living with both my parents house near KL/Selangor border. I'm coming about 26 years of age.

... and I have Systemic Lupus Eryhemathosus (SLE) or Lupus in short. Specifically, I have Lupus Nephritis. Of course, how I come about to having Lupus to me is a mystery... but I have accepted the fact that I have it and I am living with it. I am now living with SLE for 4 years already.... and still counting strong.

As this blog entails... this will be my diary as a living SLE patient for all to experience the journey and the emotions of an SLE patient. I'm sure there's plenty more out there that shares my sentiment and have the same or bigger problems faced when they are with this chronic illness.

Yes... SLE IS a chronic illness. Chronic here means that it cannot be cured. This illness can only be stabilized into an acceptable level that allows the patients live their normal life.

Before I was diagnosed, I was living a rather healthy life. I don't smoke. I don't do drugs. Nor do I actually take a sip of alcohol. I believed in trying to put good things in my body. I seldom get sick and in fact if I do, I don't take medicine like Panadol and as such.. hoping to build my antibodies and kll whatever that's making me sick.

Little did I know that this was in a way not really helping my situation. Ironically, I have SLE when I turn 21. I don't remember my 21 years old that much as I was very much in pain.

What I remembered, in December 2002, my joint pains were terrible. I was still 20 years old then. It was right after Hari Raya Festivities that we had at home that I realized that the joint pains were unbearable. But, I had still ward it off to be nothing. Why?

1. I was stick thin back then. Tall and lanky - that was me.
2. The previous day was Raya festivities... and I thought it was all the washing up that made my joints painful.

Ok.. so, I went on with my life. With occasional pain in my joints. Until one point, other things started to surface.

Nearing my birthday, I have decided to colour my hair blonde. With all the bleaching and the colouring, it didn't occur to me that the massive hair loss was due to a SLE symptom. My head was balding by the day... and soon I had resorted to wearing a wig. There was bloatches of bald spots and it was presentable to the public.

Now.. you'd think that with joint pains and also hair loss, I'd make my way to the nearest clinic or specialist? No.. I took my time. We went for blood check but I refused to get anything more than that. I was in the midst of exams and passing my papers were priority to me. My health was not that important to me at the moment. Yes, being young and naive... everything seems more important than yourself at times. To think of it again, I was quite lucky... my parents were there to catch my health problem and follow thru the years of that hard SLE reality.

It was not easy to diagnosed me with SLE. The family Dr. had narrowed it to Rheumatoid Arthritis and also - SLE. Plenty of pain medication was prescribed to take the pain away. Nothing helped tho. The main symptom was not there for me.

I DID NOT HAVE BUTTERFLY RASHES! At one point, when we had gone to a Rheumatoid Specialist, she had referred us to a skin specialist. I was suppose to be doing a skin biopsy on my face but mum was against it. The scar would be permanent and it will not be good for a young growing girl.

When did I finally got diagnosed? Believe it or not, I will always remember the date... it was on 1st June 2003. Why did I remember this date? It was the date that my parents and I was searching high and low for a hospital to get me admitted. We were suppose to admit @HUKM but due to some problem with the SARS at that particular moment, we searched for another hospital. We came about Sunway Medical Center - a private hospital. That was where I was treated first hand with Dr. Kieran. (She has now moved overseas, I reckon)

...another main reason why I remembered the day, it was my mother's birthday.

Up til now, I feel sad whenever I remember this date. It was my 21st year in this world and I fell ill with chronic illness on my mother's birthday. I tried to be the best daughter there is for her, despite my rebellion years... but... fate has it that I got sick on her birthday. Adding on MORE burden on my dear mother and my father.

This was all 4 years ago... and I still feel it til now.

I can blog all day about what had happened 4 years ago, but I'll leave it for the other Chapters. What is SLE? Chronic auto-immune disease. Look it up online.. plenty of ref. Stick around with my diary to learn first hand experience from me - a fellow SLE patient.

Will return with my other Chapters...