Josie’s parenting journey of a 6-year-old kid with a critical illness

(Note: The picture above is not Josie’s kid)

When I first met Josie (not her real name), it was during a lupus support group forum. The topic for the forum was about Lupus Nephritis medications. A young lady raised her hand, and spoke of her 6-year-old daughter’s conditions. The girl has been diagnosed with lupus nephritis class IV, and is currently undergoing chemotherapy. The doctor mentioned that in the past it is a fatal disease. But now generally people could live with it up to 20 – 30 years.

“Do you mean she can only live up to 30s as she’s 6 now?” She sobbed.

That was almost eight months ago. That was the first time I met Josie.

Continue reading “Josie’s parenting journey of a 6-year-old kid with a critical illness”

My lupus results have improved!

Ever since my last update, I am happy to share that my lupus readings have improved. 🙂 My Protein Creatinine Ratio has reduced from 191 to 95 now. It is an indication that there is less protein leakage in my urine, indirectly means that the lupus activity has reduced, and therefore my kidney managed to catch some breath and repair the attacks it encountered previously.

It is still not within the normal range of below 50, but it was a good improvement, at least it was not in the rise. Fingers crossed the next time I see the doctor in two months’ time it would improve further and go back to the normal range. 🙂

Have not been writing much lately because I was gobbling up books from my backlog list since many years ago. So far I have read more than 10 books this year, finishing the 12th one soon. That would be another post though, on what I have read so far. But it was nothing new because those books were either classics or books that I borrowed from friends more than a decade ago. (For eg Angels and Demons by Dan Brown) 😀

 

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?”