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”
Recently a friend asked me : Why are terminal cancer patients bitter if they said that they had no regrets in life? Continue reading “Salute to all caregivers out there”
Recently I have been listening to this Japanese CD from the early 2000s:
I bought it from a used CD store when I was in Japan last year.
The song that made me notice Mr Children was Kurumi . Back then I was guessing that the song was written to someone called Kurumi, as this word is being mentioned several times during the song. In my early 20s I felt that it was cute that a couple of old guys decided that they wanted to resurrect their band and play again in the pursue of an old dream. In my late 20s when I watched the video again, it hit me like lightning bolt and I started to understand what the song was about. Continue reading “Mr Children – Immerse in the melancholy”
I used to see the word chronic a lot before I have lupus. To me, chronic was synonymous to critical, serious, hard to treat, alien-spawning-out-of-a-body-part type of disease. When I started to have lupus, I learnt that lupus is also a ‘chronic disease’, so I looked up in the internet the definition of a chronic disease because it was simply too hard to accept that I might be a mutant. It turns out the definition that I understood previously was not so accurate after all.
Why? Continue reading “5 ways to cope with a chronic disease”
Ah, hospitals. The curious place that us lupus patients just have to visit once a while, hopefully not to linger too long.
I used to jokingly tell my friends that I do not normally take medical leave, if I had to, it normally means I was so sick I need to be hospitalised. Who could have thought that I was right after all?
My body got its big break last year, and because of lupus and a 6cm ovarian cyst, I needed to be in the hospital almost a month, and checkups throughout the year. The last time I was in the hospital this long was when I was 8 years old and I had appendix. Continue reading “My curious hospital adventure”
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?”
The Dark Knight (2008) was a soul shattering and nerve wrecking movie when I watched it in the cinema back then. The horror and havoc that the Joker has brought upon to Gotham city is incomprehensible and unexpectable. I recalled having my heart hung on a string from the bank robbery scene all the way until the end where batman escaped onto a highway on his batpod. Continue reading “5 things I learnt about work and lupus after re-watching The Dark Knight”
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 Meru. Continue reading “Meru – How far are you willing to go for your dreams?”
-My thoughts on attending the Mandarin SLE support forum
People said that true heroes live amongst us.
I had the honour to witness the face of the true warriors in life this very day. Continue reading “The face of true warriors in life”
When I was first diagnosed with SLE, there were also blood trace and protein in my urine indicating that my kidney are also under attack. The rheumatologist advised that I get a renal biopsy to determine the extent of damage the SLE has caused to my kidney.
I was hospitalised to undergo treatment and renal biopsy. I had to collect 24 hours of my urine to obtain a more accurate reading of the level of protein leakage.
“Every time you go away, you (I) take a piece of me (you, kidney) with you (me).” Paul Young’s song could be the theme song of a biopsy room. Continue reading “Lupus Nephritis Stage IV – When it started to sink in”