Category: Lupus

Lupus erythematosus in an old favourite drama series

cofI was watching this old favourite Japanese series made in 1999 (世纪末之诗，The Last Song), and chanced upon this oh-so-familiar name on the TV screen. Lupus! Back then I wondered what sickness was this episode referring to, it sounded like a vampire disease whereby exposure to sun can cause the little girl to faint or die. How strange is it to know that actually I was gonna get this disease fast forward 16 years later. 😅

The girl in that particular episode had serious photosensitivity issues that minor exposure could cause her lupus to flare. But I am not aware that a flare could kill someone in an hour’s time. But that was 16 years ago. Lupus could have been an extremely dangerous disease back then.

Ah, what a strange feeling.

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..”

The handover procrastination syndrome and how to overcome it

The handover procrastination syndrome is a syndrome where one feels that it is impossible to handover their current tasks to the next person because of an utter sense of responsibility. You worry that you might be passing on unresolved problems, and therefore hope to minimise the hassle before handing over. Ironically this procrastination created even more stress to the person as there seems to be no escape from the piles of responsibilities that should have shifted place long ago.

Continue reading “The handover procrastination syndrome and how to overcome it”

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”

Insomnia: My good ol’ get-work-done-odd-hours pal

I am wide awake again.

This happened when I had increased dosage of prednisone and sleeping two hours earlier like how it was when I first had lupus approximately two years ago. Instead of wasting time watching silly videos in bed, I figure maybe I should just write about how this could actually be a good thing.

Continue reading “Insomnia: My good ol’ get-work-done-odd-hours pal”

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”

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