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.

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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.

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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.

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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’?

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