I hope I’m not pushing myself too much….

Time flies.. and I am in the exact period when I found out that I have a lupus flare-up last year.

Life has been hectic, work has been stressful, and my eyes are getting more and more sore as a result. Sore eyes is normally a direct result of stress. This type of stress arises when I need to conduct courses. I have no issues conducting courses, but I often worry if people would learn during my sessions, and whether my sessions will achieve the intended objectives. I sworn off courses in October due to the high levels of stress caused by my own expectations. Ironically, I had to conduct another two day course again this week. I was supposed to have several colleagues assist me with the instruction of the course, since I prepare most of the materials. And yet, 2 out of the 4 instructors that promised to help did not turn up due to compelling reasons. So I had to be there both days.

After two days, I am glad it is over. I could not help but think: everyone has got their reasons why they fall apart.. What about me? It was inconsiderate for those people who just go ahead told me that they could not make it, and then did not offer to find any replacement. Just because I am still alive, does not mean I need to shoulder the world, no?

This is not the end yet. This is the nature of the job I am in. After you finished saving one fire, there are more fires waiting for you ahead. There will never be real peace of mind, until the day you quit. I have not decided to quit though. I still need the insurance for my lupus. Haha. I could pay for my medical expenses, but if someone else is paying for it, why not?

I am due for another check-up the week after next. I really need to manage my workload for the next two weeks so that my lupus do not flare-up again and cost me another one year of same heavy immunosuppressant dosage again. I am used to eating medication every day, but it would be good if I could taper down slightly.

Everyday is another day. Everyday is a day we fight for our survival. Gods be good and please do not let my good old friend flare-up again.

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.

San Junipero -Heaven is a place on earth

Ok. I am one of those people who thinks that every new thing gets better over time, like wine. I only started to watch Black Mirror this year, this episode – San Junipero from 2016 yesterday. AND I ABSOLUTELY LOVED IT! Especially the songs. I have been a 80s fan for the longest time, and this movie totally re-ignited my fandom of the genre. You can find the playlist in Spotify under the name San Junipero – Black Mirror – Expanded Playlist. Or an alternative would be this youtube video:

Happy listening! 🙂

Ragtime on loop – music to play when reading wartime romance novels

Here’s a nice song to play to when you are reading wartime romance novels, or anything from the 1910s – 1940s. Not suitable for brutal wartime siege novels though.

Defenses against despair

There are only two defenses against despair: working and fighting; but they’re not always enough. There’s also a third, which is telling one another lies: we all fall into that.

– Dov, If not now, when?

We don’t have to tell each other lies though. Working and fighting is great for keeping out of despair. 😊

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) 😀

 

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