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”

Inspirational story: Lupus and dialysis did not beat Sheryn* down

Many people are grateful that they did not have to experience dialysis first hand.

However, for many chronic disease patients, the only options that they have is choosing between death or living their lives as normal as possible with a slight inconvenience, such as dialysis.

I was fortunate to be able to interview Sheryn (not her real name) about her inspirational journey with lupus and dialysis. Here’s how she was able to make it so far.  Continue reading “Inspirational story: Lupus and dialysis did not beat Sheryn* down”

Meru – How far are you willing to go for your dreams?

[Spoiler alert]

With lupus, I have come to terms that for the rest of my life, I will have to be grateful for the slightest possibility of being able to exercise mildly, and work with minimum stress. I reminded myself every time not to exert myself by carrying stuffs that are too heavy, not to expose myself in the sun, and not to stress myself too much over work.

I accepted the fact that I might be climbing 5a for the rest of my life. I told myself not to ever think of big walls, and longer climbs. I could not have more gratitude knowing that at least the creator gave me the chance to climb.

I have accepted the fact that I have to tone down a notch for everything, and that I will not be able to push myself to achieve more as this might tick my lupus friend off. I learnt to forgive myself and accepted that to be a way of life.

Until, of course, I watched this movie named MeruContinue reading “Meru – How far are you willing to go for your dreams?”