Category: Lupus

Inspirational story: Lupus and dialysis did not beat Sheryn* down

Many people are grateful that they did not have to experience dialysis first hand.

However, for many chronic disease patients, the only options that they have is choosing between death or living their lives as normal as possible with a slight inconvenience, such as dialysis.

I was fortunate to be able to interview Sheryn (not her real name) about her inspirational journey with lupus and dialysis. Here’s how she was able to make it so far.  Continue reading “Inspirational story: Lupus and dialysis did not beat Sheryn* down”

5 ways to cope with a chronic disease

I used to see the word chronic a lot before I have lupus. To me, chronic was synonymous to critical, serious, hard to treat, alien-spawning-out-of-a-body-part type of disease. When I started to have lupus, I learnt that lupus is also a ‘chronic disease’, so I looked up in the internet the definition of a chronic disease because it was simply too hard to accept that I might be a mutant. It turns out the definition that I  understood previously was not so accurate after all.

Why?  Continue reading “5 ways to cope with a chronic disease”

My curious hospital adventure

Ah, hospitals. The curious place that us lupus patients just have to visit once a while, hopefully not to linger too long.

I used to jokingly tell my friends that I do not normally take medical leave, if I had to, it normally means I was so sick I need to be hospitalised. Who could have thought that I was right after all?

My body got its big break last year, and because of lupus and a 6cm ovarian cyst, I needed to be in the hospital almost a month, and checkups throughout the year. The last time I was in the hospital this long was when I was 8 years old and I had appendix.  Continue reading “My curious hospital adventure”

Can I actually inspire anyone?

I started this blog to document my life after I was diagnosed with Lupus Nephritis Stage IV, and hopefully could inspire new patients around the world to lead a normal life again. I recalled when I was first diagnosed, I was frantically searching information on the internet to give myself hope that I will be normal again, and what I saw was other lupus patients having worse symptoms, and the only direction that lupus could turn, is to worsen. The lupus patients in the ward next to my beds are suffering frequently, and whilst I did speak to some of them, I did not have time to digest what those conversations meant to me.

It took a while for me to accept my new friend, and the adjustments that I have to make in my life. It was also not easy to accept hospital bills raking up, and that these bills need to be paid instantaneously otherwise I would not be able to receive treatment.  Continue reading “Can I actually inspire anyone?”

The face of true warriors in life

-My thoughts on attending the Mandarin SLE support forum

（中文版在英文段落后）

People said that true heroes live amongst us.

I had the honour to witness the face of the true warriors in life this very day. Continue reading “The face of true warriors in life”

Lupus Nephritis Stage IV – When it started to sink in

When I was first diagnosed with SLE, there were also blood trace and protein in my urine indicating that my kidney are also under attack. The rheumatologist advised that I get a renal biopsy to determine the extent of damage the SLE has caused to my kidney.

I was hospitalised to undergo treatment and renal biopsy. I had to collect 24 hours of my urine to obtain a more accurate reading of the level of protein leakage.

“Every time you go away, you (I) take a piece of me (you, kidney) with you (me).” Paul Young’s song could be the theme song of a biopsy room. Continue reading “Lupus Nephritis Stage IV – When it started to sink in”

Lupus – When you fight you

Ever since I started to feel the existence of my nagging inconvenience, I have been hoping that it will go away eventually. 16 days and tonnes of painkillers later, it seemed that my unknown partner is here to stay. It greeted me every morning with pain, left me alone for 7 hours, and reported to me again until I close my eyes. I could no longer go climbing, lift weights, even moving around is difficult. I decided that I needed to put a name to this nagging inconvenience of mine, and have a heart-to-heart conversation with it. Continue reading “Lupus – When you fight you”

The nagging inconvenience

How it all started.

29 November 2015, 5.30am.

It was a Sunday, and I was looking forward to a short hike with fellow hikers in Bukit Saga. The alarm went off at 5am, and like any usual days, I stretched my hand to reach out to my mobile phone on the table ahead of my bed. However, today something did not feel the same.

I had problems lifting my hand.  Continue reading “The nagging inconvenience”

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