My lupus comeback update: Something is better, something worse..

The good news is.. I no longer have joint pains.

The bad news is.. Lupus is still attacking my kidneys.

I was tempted to put the title as ‘It is not getting any better.’ but I know better to beat myself down at this stage. After all it is supposed to be an experiment, is it not? Since there are different outcomes for experiments, the only reasonable thing to do at this point of time is to change the way how things are done.

Continue reading “My lupus comeback update: Something is better, something worse..”

If you can survive the hospital, you can survive everything else

Spoiler alert: This is not a hospital bashing article.

Hospitals.

The real place that taught me so much on acceptance. It taught me that I am no special snowflake. It taught me that everyone else’s lives are also important. It also taught me that if everyone is giving it a fight, why would someone else expect their fight to be more brutal than the others’?

Continue reading “If you can survive the hospital, you can survive everything else”

史琳的狼疮故事 – 如果她能快乐地继续生活下去,我能有什么借口悲观

(This is the Chinese version of the article, please find the English version under Inspirational story: Lupus and dialysis did not beat Sheryn* down )

许多人视洗肾为畏途,并且觉得如果需要进行洗肾将会是世界末日。

然而,对于许多慢性病患者来说,他们只能在死亡或洗肾之间选择,对他们而言,洗肾只对他们带来一些不便,却能令他们尽可能正常生活。

我很幸运能够采访Sheryn(不是她的真实姓名)关于她狼疮和洗肾的生活故事和心路历程。 Continue reading “史琳的狼疮故事 – 如果她能快乐地继续生活下去,我能有什么借口悲观”

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”