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Living With Nephrotic Syndrome

So this will be my most personal update yet…

To know more, click on the above.

1. What’s Up?

I have been living with Nephrotic Syndrome for some time now – 20 years to be exact. That’s more than half of my lifetime. I was first diagnosed with the condition when I was 4 in late December. According to my family members, they were shocked to see me all swollen during the day after my great-grandmother’s funeral. Nervous, they brought me to a children’s specialist and quickly I was referred to the Sarawak General Hospital. From the day I was diagnosed, my life and the life of my family was changed forever.

2. Are You O.K?

The first thing you should know about the condition that I am in is that I am actually fine – except when relapses occur. What is a relapse? A relapse happens when I get all swollen up like the first day I got the syndrome, with the added effects of frothy and very deep-yellowish-orangey-reddish coloration in regards to my pee. The swollen thing that I get is an indication that water is building up under my skin – edema – and when you press my skin, there would be a dent on it that would take time to disappear.

3. Could You Die Because Of Your Syndrome?

No – I hope not. The cases of deaths related to Nephrotic Syndrome is rare if not any. It’s not really something fatal. It can get worst if I don’t take good care of my diet and lead a healthy lifestyle, but the most important thing is to always, always, ALWAYS remember to take my meds.

4. Are You Normal?

I like to think that I am. My family sometimes forgets that I have the syndrome while only my closest friends know I have the disease. The doctors (when I was younger) were scared that I might have social and physical defects because of what I am experiencing. When I was a kid, my physical defect was caused by this steroid that I took. It increased my appetite to a maximum level that when I was 12, I weighed around close to 90kg and I was less than 160 tall at that time. Imagine the state I was in. But the doctors took away the steroids and I have been losing weight ever since. But now I am gaining the weight again but that’s a whole different story.

5. Can You Get Better?

I hope. There are some cases that a child grows out of the syndrome and seems to be living fine without medication and all. But I am 24 this year and I still am relying on my meds. On my recent visit to the docs, I asked her whether there was a chance for me to get better, she said that most probably I would be under a lifetime observation – which sucks.

6. Do You Think Your Life Would’ve Been Different If You Are Not Affected By The Syndrome?

I have no idea. I think I would lead a different life, a life that is more free, something less chemical and drug dependent. That would be a great life to lead I think. Not having to waste time waiting and seeing the docs, or get scared of getting into worse health situations that I am in. I am thankful though because I think with this syndrome, it has helped me – directly and indirectly – to be the person that I am today. So there is an endless possibility to this question which would take a lot of time and complexities to explore.

7. How Was Your Life As A Kid?

It was challenging if I were to look back at it. I was hospitalized a lot of times, up to a period of one week to two weeks. But somehow or rather I managed to get good grades at school but I don’t know how I did it. I ate a lot. I was fat. I ate a lot of meds. Life was tough but I pulled through, but funnily I couldn’t remember how.

8. Future Life?

Future life? I just hope that I’ll be living a life as close to normal as possible and not to rely on meds and by normal I mean not having to see the doc that much. When I was a kid, the doc asked if my p***** was functioning fine. At that time I didn’t know but now I do (haha). There was even talks on seeing the condtion of my swimmers but that’s yet to be done. So the thing I really desire for now is a life closest to a normal person who is healthy and fit and who does not have to the see the docs that much and not having to rely on meds to get by.

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An Open Letter to Employers & Colleagues

So this is written on behalf of other employees. Stay strong. 

Hello dear employers & colleagues, this is your employee and fellow colleague speaking:

I know you and I, we don’t communicate that much, but please realize that I have always been here for you when you needed me most. I stay up late to chase you, I spend less time with my family and friends because I have to spend my precious time with you. Even when I was sick, at my lowest – at my breaking point – I stand by your side, loyally. I am quiet, but that does not mean I don’t see and feel what is going on around me. I’m not stupid. Don’t make me feel like I am being taken for granted, because I feel like that most of the time. That sucks, ya know?

On some days I feel like giving up on you, and believe me if I can I will, but I don’t have that luxury because I need you too – as much as you need me too – though you never say that out loud, but that is how I feel. I mean, who else is going to do your dirty work as great as I am doing? In this very competitive market today, you can find a lot of people craving for a job, but would you want to risk your time and efforts finding someone else who could possibly be worst than I am at what I do?

Appreciate me before it is too late. I know what I am worth and I know I am much more capable than I have showed you until now, but if you would stop oppressing me, stop pushing me aside, and make me feel like crap at the end of the day, trust me you’ll end up on the losing side. No, this is not me feeling overly-confident about myself, but I am sure that there is no one out there who can do a better job than me. I am loyal if you give me the appreciation I need.

Which leads me to the next point – when working in groups, WORK in groups. Do not take credit for something that is not yours. Share the failures and the successes. Support and care for each other. If you cannot stand working in groups, I suggest you move to a lonely island on the other side of Mother Earth. Don’t take all the praises for yourself and leave the others behind. Do not blame others for your own faults. Always admit your mistakes. Do not gloat. Do not show off that you have a lot of things to do. Say thank you and congratulations when you should. If you are a leader, lead well. Show great examples. Don’t be a stuck-up snob. Hold your temper. Be professional when needed, be friendly when required. Keep to your words.

I am not leaving you, I am giving you another chance – I am giving myself another chance – because I realize that running away has never been the best problem-solver to our predicaments. I could come and talk with you face-to-face, one-on-one, but that won’t change anything much as my words would only dissipate into thin air. I want to see how far we can go with this before we both break and fall apart. I want to go into the horizon with you and have a happy ending. Make me feel like I want to be in this relationship, not like I was forced to be in it. I want to be happy with you, I really do. There is no use being stuck in a rut not feeling happy for something I spend so much of my life with. You make me happy, I’ll make you happy. This is a two-way-street. There’s no I, there’s WE. I know if I am doing a crappy job, you can go ahead and scold me all you want, but if I am doing a great job, give me the credit I deserve.

Most importantly, I want you to appreciate me for what I did, for what I am doing, and for what I will do. Because at the end of the day if you don’t, I’ll leave you and I know you’ll find a replacement for me, but that person will never ever be someone like me. So before I slam that door and not looking back, make sure you treat me right. I’ve sacrificed my blood, sweat and tears for this, and the least you could do is….

Say “Thank You”, sincerely.

And a pay rise and more benefits would be nice, too.

Yours Sincerely,

An employee of your company

 

 

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On Kuala Lumpur’s public transport – Saleh Mohammed – taken from Malaysian Insider

So hear me out

I woke up earlier today – 30 mins to be exact – to catch an earlier bus for work. I arrived at the bus stop in Seksyen 17, Shah Alam bound for Seksyen 2 at around 7.00 a.m. I saw a bus earlier at 7.00 a.m and I was convinced that the next bus would arrive around 7.15 a.m. Sadly, 30 minutes later, the bus turned up packed with other people and I was feeling pissed as ****.

That’s not the worst.

On Monday night, I had to wait for an hour for the same bus service from the Shah Alam KTM station to my rental house at Seksyen 17. Yes, I waited for one hour the bus. A whole lot of time wasted – by waiting. I could have hailed a cab instead but I am saving money for some other things. A single cab service from the train station to my house would cost me around RM 6- RM 8, and this depends on the traffic conditions.

This is something I experience (almost) on a daily basis, and I don’t know how I am able to stand such horrible services or how much more I can take. One more thing that I have not experienced to the fullest (because I don’t drive yet) is the horrendous traffic conditions. Every single time I am on the bus on my way to work, I wonder how people have gone through this for years. I’ve only gone through this sort of traffic on a daily basis for 3 months and yet I feel it has taken its toll (no pun intended) on me.

There is a serious need and demand to improve the conditions on the road. We have more cars and with the National Automotive Policy underway, it seems that more cars will be added on the roads. Is this really necessary? We have a lot, A LOT of cars on the road already, crowding whatever space left on it, and yet here we have the Government implementing a policy to add more vehicles. But I am not blaming the government solely.

We can do something to change this too. By opting for public transport or even carpooling with your friends, we could reduce the number of vehicles on the road. But here’s the thing: some of us are not ready to take this step because they do not find the public transport services to be reliable enough – and who could blame them for having such perceptions? Heck even if I have a car, I’d say goodbye to public transport, especially to the wretched T529 service. People have this fear that if they use public transport, they’d arrive later than usual to their office. There is a truth in this statement, but really, the reliability and time of the services of buses especially too rely on the conditions of the road. We need buses that come and go at a higher frequency than they already are.

Buses especially have a hard time keeping up with their schedule and this is connected to the number of buses available, as well as the condition of the traffic. There is also a problem of where the service provider lacks bus drivers. This is something beyond our help and all we can do is hope that they’ll be able to resolve the issue at hand and begin providing A-class services to people who ride the bus (like moi) everyday.

We look up to the government to come up with a viable solution for the traffic congestion and also the horrible public transport services. Are we really moving forward or are we digressing into the unknown once again? If the problems are not solved, we will go into a loop that we will find hard to get out off. What we need is a better and more trusted and reliable form of public transport. Instead of spending billions on policies to make cars cheaper, we should be improving our public transport services. We have the MRT coming up and I really hope it could solve at least a small percentage of the congestion problems we have on the road.

As a developed nation, we should all work together to make things better on the roads. Take public transport when viable and if it is viable too, carpool. You’ll save a lot more on money and you can start planning for the next vacation with the money that you have saved. Public transport providers should take into account the needs and services of the people who use them because ultimately, your jobs depend (and business) depends on us, the “loyal” users of your services.

For more read, click on the link above to get another view of this issue.

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The One With The Bus-Stop

So let’s reminisce

“We predicted this.”

And these words echo through my head. Yes, we kinda did predict this is the life we “wanted”. It is a typical transition from being a student to becoming a working person – but no one said that it would be this difficult; and lonely. Things are definitely changing and I sometimes feel like I want to stop those changes from happening and revert back to my “glory” days of being a student.

Remember the nights when I would call asking you to accompany me to the shop and you would (reluctantly) say yes. Then we’d buy little tidbits for us to munch and we’d spend all night talking about the past, present and future at the bus stop. I gotta tell you, those conversations that we used to have – they were magical. I poured my heart out to you and you’d sit there listening to every word I was saying.

We’d spend all night talking and talking and talking.

I’m sorry I was selfish but sometimes I feel like you’re the only person that could possibly understand me. Ironically, you have never gone through what I went through, but there I was talking about myself. Then you pointed out that you had things to say too then I began realize what a dick I had been to you. 

I sit at the same bus stop every day now and those emotions don’t come by anymore. I almost forgot that I had some of the most profound conversations there. Now that I am looking back, now I remember. 

Thank you.

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The Great Thing About Being Good Looking

So I was showering and there’s a mirror in the toilet. So I took a good look at myself and I thought, 

“Urgh, if someone were to see me naked, they’d probably run.”

I don’t have the most awesome body, nor the most handsome face, but I think I have personality. I’ve been told that I have a great smile. But hey, let’s not get carried away. I’m not praising myself, but I want to make a point – we live in a material world (yeaps, Madonna’s tune is in my head now) and good looks play an important role in determining how easy(-er) life would be if we have it. Many people would deny that good looks isn’t everything (especially when it comes to looking for a partner) but we all now that it is a blatant lie. I mean, who wouldn’t want a Chris Evans as a boyfriend or an Angelina Jolie as a dotting wife?

I would say that with all honesty, that good looking people get off easily in situations. They’d usually be the least likeliest of person to be suspected of murder, or any crime for that matter. If you can’t make a living out of being a lawyer, or a doctor, or an accountant, or a computer engineer, you could always be a model, or if you have mediocre acting skills – an actor, and a mediocre singing voice – a singer, or if you are really great in bed, be a porn star. The possibilities for you are endless. This a prevailing trend in Malaysia (not the porn star bit). If you are good looking, you can be a singer or an actor, or a host just-like-that *snapping finger*. People don’t judge you for your talent, they judge you for how you look.

Now this is not the fault of production companies alone. We as viewers have the power to decide who goes up and who goes down too. It is in our human nature to be biased towards those who are good looking. I’m not saying all of us, I’m saying most of us. I’m not saying that I am free from this bias, but I am guilty of it too. The ironic thing is sometimes – like me – I’d judge a person based on how he or she looks, but look at me, I’m not physically perfect myself. We crave for a good looking person in our life especially when it comes to looking for a partner, but hey good looks don’t last.

I think there will come a point in our lives that we will look back and say,

“How could I have judged a person based on how he or she looks?”

We are shallow, if not all the time, some of the time. But later on as you go on with your life, you’d realize that people with the best looks sometimes don’t have the best hearts and the best personality. You’d realize that their devilishly handsome features, and their toned bodies would melt away, and all that’s left is who they are inside.  So if you are working-out to get the body of your dreams, or getting that nose job, be sure that you get your personality in check too. We don’t want some one who just looks good but has a heart of a bad person.

I’m not saying all good looking people are bad. I’ve met plenty of good looking people and they are nice, humble and friendly. It’s just that sometimes we gotta be careful with our judgments and not to think that they are all nice and goody-goody-two-shoes. Maybe I am jealous of good looking people because they do seem to get it easy (haha) but let me reinstate that we are living in a material world whereby a not-so good looking person would be given a harder time (in general) than good looking people.

But hey, that’s life. We can’t have everything in the world. So if you have good looks, you are a plus. If you don’t, then you gotta work harder (this, depends on the industry you are in).

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