Monday, November 28, 2016

Instagram & Travelling Lupie; 15 years with SLE


Gosh. It's been a super loooong hiatus. And it has been a good one. Alhamdulillah. I never thought I would be blogging again. Instagram has been great and I seriously need to learn to take better pictures. LOL.

So, almost 15 years hey? With Lupus and Life.

 Everything has change. Truth to be told, I love instagram cause a picture worth a thousand words. And yikes, I do love taking pictures. Now learning to take a better one plus video editing. Blogging is part time now. since recently I learn I need to write again. Better agenda this time. And hopefully less taxing writings.

What change? Now I am 5 years in careers! Yeay! Moving on to the next level, I sure hope to get my masters done plus learn more on nutritions and fitness.


Not to mention, I feel the need to learn again. On nutrition, food & organic green life. The anti-inflammatory diet & Lupus exercise. So far, I am excited in this particular area cause I would love to learn prepare healthy dishes for my kids.

Yup, still low on love life, but hey, newsflash: I finall make a doa of it last year. Seriously. Kihkihkih. Tak pernah terfikir bout marriages sgt just wanting to have a cute healthy family. Well,as much healthy I could get. But hey let's keep positive vibe ok? *wink*


Honestly when life is unexciting anyway. I finally reach my wishlist; Bali, Yogyakarta, Bangkok, and my favourite Mecca & Madinah. But still, I had like super long wishlist of places to go still. Sigh. I enjoy traveling so much despite my condition and learn better about life & myself along the way. I sure did, and I am thankful for every moment of it. Allah is the greatest writer of all.

A lot can happen in one year. I lost my father on 2oth May and learn to never take people around you for granted. My beloved cat too, Oden died just a week befpre my brother's wedding. Indeed. Innalillahiwainnailaihirajiun. From Allah we come, to Allah we shall return. So, a year is such a big 365 canvas fof life. And I sure hope to be amaze and posiiively content of what life can offer. Good or Bad, everything is form Allah.  I am thankful that and Allah has been very kind.

So, here to better health, better positive vibes, better travels, ikhlas with lots of syukur.

Travelling Lupie,

Monday, December 10, 2012

To be whole again.


Simple question. Before SLE I would list millions things. Millions. After SLE, I am not sure anymore. This part of me, my healths really shift my life thoroughly. The choices I made, the options I have to list, the dreams that I have to let go. The reality that I need or actually force myself to accept.

It's overwhelming.

I am scared sometimes. Of uncertainties. Of promises. Because life is unexpected.

To find a good friend in life, is something I treasured. I thank Allah for a superb family and friends support. I wouldn't ask more from them. Their understanding, their support and love. I am grateful to meet these jewels in my life. Thank you my dearest family and friend.


The part of my life previously is all about achieving goals. I forget about being happy. And to define happiness is something I am learning now. I am glad that I love working hard and smart in achieving my goals.

But I need to install more meaning in my goals and happiness in it. =)

I need to dream again. With a smile in my heart and face.

There will be people who said you never be a good enough or mock your effort. I am praying and hoping that I will meet more people that inspire positive people and actually helps to build better character. I am glad that I am meeting a lot more inspiring people.

There are bigger world out there. And God has always a better plan for me.


I want to strike a balance in every part of my life. A humble servant of Allah, happy & more grateful person, SLE and my health manageable, successful career, great relations with great people and improving everyday. Enjoying my life and sincerely improving for Allah. I want to be His successful servant dunia and akhirat.

I used to be so specifics in my goals and it somehow pressured me so much. now I did specified it but with more understanding on how to deal with goals.

Target/goals or ambitions can be a motivating factor. It should have a 'push' or driven energy for you to take action. But never stressed or burn you out. Knowing how to deal with goal/ambition is a major bonus when it comes to the pursuit of success.

Comfort is never an option when you want to pursue goals/ambitions. Plus with courage to put your goal in action. Alhamdulillah, for now I learn to chill and enjoy the moment. But yeah, am going to work smarter and harder to achieve my best in life especially to gain Allah's bless.

InsyaAllah. Introduction to working world is a good experience as it toughen me up and shaping me for the better. I love to see a glass half full. And trying to satisfy people is an option I have toss aside forever. It's never an option.

Thank you Allah for the best lesson in life. Alhamdulillah.

p/s: I am a blogger who reads other blogs a lot. Now having fun reading foodblogs reviews and lifestyle blogs. Am exploring interior design,motivation and travel blogs. Thank you people that reads my humbling rants here.

Wednesday, November 14, 2012

BUT YOU DON'T LOOK SICK- SLE biggest misunderstanding.


When ppl said they had cancer, it's easy to picture and understand how hard the situation is. Cancer is widely known, had fatal potential and the surviving rate is unpredictable. So it is easy to explain to people how sick you can get and how the treatment affect you especially chemotherapy.

So,imagine when you explain the not-so-famous illness but also with fatal risk and unpredictable condition such as SLE to other people. It's not easy. First they look at you somekind of blur face 'WHAT ON EARTH ARE YOU TALKING ABOUT?" Then, they stared at you blankly. You are lucky enough if they kesian at you. Le sigh....

Anyway what is SLE? SLE or  systemic lupus erythematosus is a chronic illness autoimmune disease. Simpler terms- your immune system gone crazy,attack ur own body (cells, joints, blood, organ)-mostly by inflammatory response.

It's not as famous as cancer-but yeah, we have chemotherapy session, we have acute and chronic state and we have fatal risk.

I am not whiny here, but there are other not-so-famous illness such as ALD (adrenoleukodystrophy) best known is film of Lorenzo's oil, Scleroderma (the thickening of the skin) and so many millions more diseases out there, with that names you never even heard before. We are just part of these unheard but serious conditions that only people  with first-hand experience knew how hard life can be.

So yeah, not as famous as cancer .


I am finding balance in life now. Am happy to admit I am beginning to challenge myself with improvements in so many aspects. Got back from meeting a good friend I knew through internet world (Alhamdulillah-internet is the best thing ever happen) I have began slowly adapt to working life and managing SLE.

For now, I learn to chill and handling stress at workplace and not making SLE as my excuse. As ambitious as I want to be (read: my idol is Prof Dr. Muhaya or Dr Haslina Hj Siraj-which I am far  from them..sigh, oh well a girl can dream rite?) I MUST KNOW MY LIMIT.

Out of control limitation is something I learn to cope up with when life turns ugly, stress is shooting high and SLE make the flare moments. I am guilty for taking my health for granted, for pushing myself to the limit when I knew my body is fragile and for dreaming of conquering universe when I don't even own a spaceship-let alone know how to built it.

A dreamer, goal oriented, perfectionist and not-so-realistic are my weakness and strength at the same time. Despite SLE- I am just a normal person who has what other basic needs that normal people-disease free dream off.

But God always has other plans for me. He always makes thing unconventional as much as it could get for me, for I have not know any obvious reasons-that we are all His servants-bound to be test from tome to time.

And my test is my health. A life changing,bottom rocking health test. Which He believed the best- while I protest continuously-as His servant yg lemah and diuji-of course I got my weak moments-are the worst for me.

Plus with very little advertising- SLE is NOT THAT FAMOUS-makes it hard to explain to people let alone asking them to understand you.

Thus. I STOPPED SO MANY YEARS AGO-to ask or even hope for understanding. I have my own principe, THAT MY ILLNESS IS FOR ME TO UNDERSTAND, MANAGE IT PROPERLY and if the person willing to give their time and attention only-then I explain only policy.

People, I know u had ur problems too. I know that there are billions chronic illness disease out there with hard names to pronounce and much much more difficult to deal with. Thus, I respect all of your test and hardship with hopes that other people respect mine.

And yep, reality is what reality is. I am accepting that part with open heart and a bit of maturity. I am thankful I had overcome the test-surviving with all the help I could get and become a better person. 


There are spoon theory from butyoudontlooksick website. I have my own theory to explain when it come how tired I can be despite I do the normal activities other people do.

Imagine my energy bar is like the energy bar of video games with percentage or just look at your smartphones battery bars. 100 % right after charging? Well, that's my energy level after 2 days of adequate sleep (we sleep like a cat ok) and well rest. 

Then the normal activities ( we use extra energy and yep, my battery level is just like your smartphones- very fast depleted)

a. getting up in the morning,bath,pray,ready to work-97%
b. driving/travelling (affect by how far/jam or not/stress level of travel)- 90%
c. working (stress level, exert energy)- 50%
d. actual shopping/exercise/homeworks-30%
e. managing one self: bath,cleaning house,wash dishes, watching movies-20%
f. dealing with emotional situations- 10%

*by the end of the day- I have 0% energy bar and I just crawl back home to sleep.

And guess what if your smartphones gives u warn at 20% battery to re-charge, it is very easy. plug that damn thing to electric plug, there you have your source of energy. Where as us, the SLE-ians, don't have plugs, and our energy level increasing slowly but deplete rapidly-has create fatigue situation.

Some of us looks so pale, body temperature skyrocket (I selalu mandi 2-3 kali or drinks lots of water to cool down,have to control temp if not brain will fit) and experience steroids side-effects like nobody business. 

That's when I become so calculative- oh this exercise events weekends-x bole pegi la, nanti isnin nak kerja penat pulak. Ok, nak keluar lepak lepas keje-next day must cuti day baru boleh cause need rest, Overtime/extra working hours- my recharge battery level must double the extended hours so can get well rest. Aktiviti cuti-outdoors boleh blah, hanya indoors, no sunlight please, only relax activities. Jalan2 di mall, must plan pg shop mana, yg x ada kaitan-x payah masuk, so less jalan2 sgt, can relax and really enjoy shopping. (now I browse through internet to shop-thus easier). Internet banking is gift from God and internet itself is awesome.

So, yeah, I don't look sick-the biggest misunderstanding ever that I really have a strict policy on that. I don't explain to get sympathy, I explain because you are willing to listen and understand honestly. TQ.

Saturday, November 10, 2012

Letting it all go.


Today marked the end of my Pre registered pharmacist day. It's a blood,tears and gruesome time for me. Well, I have sweet, mature, humility and smiles time too. It's a bittersweet moment.

We celebrated mum's birthday a bit early this year. Since my nephew and grandmum will be staying with us,so we celebrate early because after this we are focusing on their arrivals and needs. 

Bought a super awesome crepe cake from Humble Beginings. Me, super brilliant ordered by not reading the manual from their website well, it turn out ok. Hehe... 

We have family dinner at Mohd Chan's chinese restaurant. I love the atmosphere and their fish. Love the duck dish. Good. But the dim sum still not par with what we had taste before. So, it's a good food. The best thing is they don't put that much MSG, cause I know, if they did, I would have swollen lips and jittery feeling.


The truth, it's not what I expected. I would like a simple end of my prp life, stuff like send my logbooks properly or at least pass cukup2. That's my target anyway. But thanks to my utmost performance of the year, yep I thick faced send my cukup2 markah as long lulus and hope I could get my posting somewhere that is peaceful and not that gruesome.

As sucks as politic games at work can be, it did teach me something. People can be deceiving, downright cruel but nice people still exist. And you need to learn to value them and keep ur smiles and hope things get better.

It is true, to satisfy people is hard, but to satisfy Allah is the easiest.

I need to tune my spiritual compass and hope to find answers as how I could be a better person plus employee and perform better in a more suitable career. 

Ending this phase of my life is a beautiful experience. Finally, a time for myself. Which something I've been missing so much.


Mum, I know it pains you to see me in pain, thanks to SLE for making it hard to make choices let alone managing it. SLE has change me a lot, a chronic illness disease which let people quirks their eyes at you when you say you are tired. BECAUSE I AM TIRED ALTHOUGH I DID LOOK PUFFY THANKS TO STEROIDS, MORON! YEAH, I DON'T LOOK SICK.

WHAT DO YOU EXPECT? SEEING ME VOMIT AND PASS OUT ALL THE TIME? Oh...nice, now you look sick? PFFTTTT!!!!! HELL, it has always been ME & MY PARENTS managing the bad events, when SLE GONE WILD. Oh yeah, maybe you would love to stay with me when SLE flare and see how I VOMIT and suffering from head splitting headaches, popping every pills to let the pain, joints pain and any pain go away.

If you're not in my shoes, DON'T EVER TELL ME HOW TO LIVE MY LIFE! You work in the hospital some more, GEEZ!

Yup mum, I know, they don't know. Thank you for your advice and support for these tough time. I am thankful that you are tough and trying your best. I truly am. This time, it's my fight now. It's not gonna be pretty and bad all the time. I just wanna be thankful that I did survived and work for Allah. 

I know that I am far from perfection, and I am trying my best. I'll make sure that I be better than those people. I forgive and forget them. They are worthless to remember anyway. 

InsyaAllah this time I'm wiser and better. 

Monday, October 15, 2012

The not so perk of being a sick wallflower.


There's this wall i built around me when I got SLE. It has been there for quite sometime, until recently it thickened and crash me. 

I have this brave mask face and pretence when I am around people. I act like I know what I'm doing, act as though I don't need other people's help or sympathy. Act as though I am alone is good enough to face the big bad world.

When inside, I am merely this fragile sick girl. Physically sick, emotionally shut with big dreams that hold my thoughts everyday. SLE has made me calculative of what I do,hell, even I have to calculate my own feelings.

The result? You can't just be this empty shell, working around all day without any emotions. Things don't usually turn out the way you want it to be,then you just keep the disappointment inside. Bottle up your feelings when all you want to do is shout "you know what I like you" or maybe "hey i could do this without being so tired the next day". The endless possibilities has become 'could it be possible for me' every day.

Every single day, i put up this mask and it had turn me into someone I don't want to be. Easily irritate due to tiredness, or actually exhaustion will be the accurate word. I AM TIRED,ok? TOO TIRED. Physically drained, emotionally exhausted and too scared to ask for help. The downside of being a serial non-taker when you are actually very sick. Le sigh...


I dream of a quiet life now. Work has been so gruelling lately. With the viva and crazy hospital schedule I learn quite badly that I need to plan my rest & off day plus like it or not I have to deal with people everyday.

I learn quickly too how words travel by mouth can really turn things ugly. Gee, I did try not to get involve in stupid rumours or gossip or actually mengumpat. I run away from the place immediately. But hey, people just love spreading bad things about other people right? Sadly, right. I still keep my mouth shut tightly and hope Allah will clear my name up with the truth. For now, I just sabar and pray hard that my name will be cleared and whoever had bad-mouth me will face Allah's judgement. I am no perfect human being either, but I know what I said and what I didn't said. 

I just wish that person will learn her/his lesson and I already forgive but never forget. 

So much for wanting a quiet life and being a sick wallflower right???


The world seems a wrong place to ask for justice right now. I read it somewhere "asking for justice in this world is like asking a lion not to eat you because you don't eat lion". Crap.

I might as well be the lion. 

I longed for a place where I could be love and accepted. Right now, home is my safest sanctuary. I could be in my worst state of sickness and feel safe. As for my career, I'm still searching a job that I am happy to be doing everyday,plus handsomely paid too. 

Hey it's achievable right?

P/S: I'm trying to be positive so hard right now. I do,and I need to admit that I learn how to ask for people's help. It nearly scared me too much when I first asked for help. And I do it in a very wrong way. Sorry colleagues, I learn to be a better communicator next time. Wish me luck!

Saturday, September 29, 2012



One thing about work I learned is seniority. It was a really shocking experience for me. The truth I never expect work would bring the best and worst of me. I have always seen bossess are just boss. A position with powers and great temptation. I actually never cared about that until I have the experience of how bad or good a work politics can become.

As usual I would definitely do my job with vision of wanting to do it because it's an amanah from Allah. I applied the concept of God is my CEO since pleasing people are more difficult than pleasing humans. I understand the concept from the start and keep my nose down and chin clean.

But people can be...people. You may do your work as best as you can, or as ikhlas as you want. My vision of my job is to see it as God entrusts responsibility and achieve almost perfect work done. Well, that is an individual vision.

Then,something happen. I grow up and began to clearly to see what is seniority is all about. What is a position from another person view. What is the meaning of 'kerja bawah orang'.

No wonder,when most people come back from overseas they are told to mums the word, this is Malaysia. Or keep opinion about it or in other term,shut up and just do your work.

I had a friend who told me that: 'if your bossess want you to be stupid,then be stupid.'

And the truth, I don't wanna be stupid,so I just play stupid then.


I've just finished watching 'THE HELP' movie. It's liberating and at the same time it gives a really good point. Courage is something that you need to use it wisely. And I am in the learning process of humility, understanding what is work politics and how to manage it properly.

It's one thing when "If you don't have anything nice to say then don't say anything at all", then there's this one thing, "Don't let people bullied you around." You are the one in-charge when it comes to this matter.

Too many arguments will definitely score you the target list to be put down or too nice,you become the doormat where people just 'pijak' you.

Balance, and skills to avoid trouble are necessities to survive. But surviving is not enough, you need to know who is the real person you are dealing with. And a very good soft skills to deal with people around you, which in this term please use it for good things not to use people around you.

Of course,there are many examples out there I'm sure. People who talks nice in front of you,when actually he/she is the one reporting bad things to your colleagues/bossess. Double face, back-stabber or gossipers name it you will get it. This is the real world people. A very real world.

And I thank God for my brother's sarcastic remarks when I told him I will be starting to work: " Welcome to the real world".



I'm a government servant indeed. I work from 8am to 5 pm, with extra amount night calls 5pm-10pm and supernight shift from 10.00pm-8.00am. I work hard and smart,accept my responsibilities to serve patients at hospital trying my best to provide a very good healthcare.

And yes, I am human too. I need my sleep, rest, food, I am bound to have feelings just like every normal human beings. And I make mistakes despite always double checked and learn from my previous mistakes. I feel tired,angry and sometimes sad too. I have SLE,chronic illness disease, fears of my health and my kidney, trying the best to fulfil emotional needs as a normal beings and pushing away the concept of perfections. I have my best,worst,the good and the bad qualities of any normal human being.

I am constantly improving myself to achieve my goal which is 'berjaya dunia akhirat'. Don't simply judge me when you are the only one who knows how is it being you and could care less of how is it being me. We are who we are and we definitely have different perspective. 

I'm currently enjoying my everyday learning process,only this time much wiser. I still keep my mouth shut and yes, avoid office politics as much as I can. You can only control so much as you can,but then things could turn haywire and ruin your plans.

But I believe Allah has His reasons. And I'm grateful to learn it early and plan my careful steps in the future. I always plan to win the war,never the battle.  

To be told the truth is the most important things eventhough it hurts. But learn this, the truth does hurt but it is always better than lies.

So,I am determine to work hard for Allah, and as sincere as I can. InsyaAllah. And I am learning, happily and with more humility. =)

Thursday, September 13, 2012



Alhamdulillah,September seems calm enough with all the stress of sending logbooks and final preparation to become full registered pharmacist. I actually manage to steal time for Yanie's bridal shower. She is our dearest friend and is the most kind heart person I had become lucky to be friends with. Sincere and positive too. Bless you Yanie, for all the love Allah surround you with.

SInce she is the master of prank,(believe me she is) the 2 mastermind Namie and Wina had a foolproof plan to kidnap the bride-to-be and bring her to the secret location. Hehe... Namie's backyard. IT WAS SUPER AWESOME since they had decorated it with star shaped lampu lip-lap. are some pics for you guys to enjoy. =)


It was my first experience ever actually. I don't know the details but I do read about it at Vivy's Her blog is awesome. ^^. Okay2, I get back to original stories. We actually had quite fun and had customized the bridal shower to suits muslimah's theme. 

Look at the door gift we got!! =D

I'm loving the muslimah's bridal shower theme since we shared bits of meaningful ayat Quran and hadith among us. Plus the food was SO SEDAP!! You can never beat homecooked meal ok? Esspecially when you make it with love and ikhlas. 

Yanie got a lot of presents although there are some naughty ones. Aip!! when I mean naughty it is still within the baik range ok? Bukan naughty bukan2. We know our limits.


But you know what, the best thing about this whole bridal shower stuff is about being there for someone you love. Because after this she will be exploring a whole new world, marriage, family-in-laws events, being wifey, pregnancy and a whirlwind experience that need attention which our dearest friend will soon enough be busy and we would understand how important to respect her time.

This is not goodbye, this is a celebration of a whole new experience of being a woman in this world created by Allah. We are her friends, we will always be supportive regardless near or far. Maybe physically distant but in our hearts we are always close. With Doa and deep understanding we organised this bridal shower for her. 

So our dearest Yanie, may the ukhwah always grow and become strong, even we as Muslim woman changes our roles as time comes. Know this, our ukhwah is based on Allah, thus we always pray and wish the best for you. May Allah will always be with us. Ameen.

p/s: we had fun with the games that Namie and Wina had stored for us. These 2 people are the best moderator ever!=)

Wednesday, August 22, 2012

The price to pay.


I never consider myself as the top player. I'm average. I knew that in the deepest corner of my heart I have to strive harder, work smarter and prove every single way that I'm worth to be in the league. But at what cost? Why sacrifice? Why I am so intend to work my butt off to give my best when there are people around me always thinks or said that I'm not good enough. That I have never make it to their par. Who are these people to graded you and life or to standardize the achievements?

I have never been so intrigued in my life to actually immerse in this type of rat race in my career life. Nor accept it blindly,because I wanted things around me to be better. Career is not my life but just a part of it. Can I really have it all?

This question has been bugging me this whole month. The truth I want to love what I do and be happy about it. I want to be able to work with others, to put deeper meaning in my career, to stabilize it to a point where I can evolved and be a better person at the same time fulfill my duty as His servant. To be able to differentiate what is important in life other than materials and prizes. I want to achieve balance,love and harmony in every aspect of my life. To say it is easy,to achieve it,is another thing.

Plus with SLE the challenges double. My priority is my health. Because I never want to burden me or anyone at all by being sick and immobilized. Percayalah menjadi manusia sakit sebenarnya sangat menduga tetapi Allah masih benarkan sy menjalani kehidupan dgn baik. Masih mampu bekerja,mampu menyara diri sendiri dan saya tidak suka menyusahkan sesiapa. Diuji oleh penyakit sebegini dan dalam mengejar cinta cita-cita sy perlu realistik. Sangat realistik.


Whatever definition,decisions or actions I took or about to take must be for His please. I am His mere servant bound to His rule and responsibility. Yet I am human. I make mistakes, learn from it and move on by being a better person. 

Percaya atau tidak, saya suka pd kata-kata " Kehebatan terletak pd kesederhanaan". Itulah fakta kehidupan saya. Saya cinta pd kesederhanaan. Kerana pd kesederhanaan ada ketenangan. Tenang, itu yg sy kejar sbnrnya. Tapi bukan kehidupanlah namanya jika tiada tribulasi, cabaran dan kekalutan. Mencari tenang dlm kehidupan merupakan satu cabaran. 

Sayakah yg tidak realistik atau sebenarnya ada jalan penyelesaian cuma perlu pada inisiatif proaktif. Skrip kehidupan manusia memang sudah ada di Lauh Mahfuz tetapi pilihan kita tetap memainkan peranan penting.PILIHAN. Merupakan satu perkataan mudah tetapi sangat mempengaruhi kehidupan. Hidup ini merupakan kelas pembelajaran yg punya ruang pilihan dan improvement yg besar. Setiap pilihan sy ada juga silapnya, walau tujuannya ingin mencapai keredhaan Rabb.


Mengejar kejayaan dunia dan akhirat memerlukan pengorbanan di peringkat awal. Bak pepatah melayu, bersusah-susah dahulu, bersenang-senang kemudian. Jika inginkan kemanisan syurga maka mesti menelan pahitnya ujian dunia.

Saya sedang memahami konsep 'the price to pay'. Kerana apa jua jenis kejayaan pun, pasti ada harganya. Apatah lagi kejayaan dunia akhirat beserta mengekalkan kesihatan diri yg diuji.  Semoga Allah memberi jawapan dan menguatkan minda,hati serta iman utk mem'bayar' harga kejayaan ini. Ameen...

"‎"When I pretend to be strong, no one sees my hidden tears except Allah. When I'm sad and need a shoulder to cry on, no one supports me but Allah. Pleasing a human is very difficult, pleasing Allah is the easiest. People sometimes punish me for mistakes I have not done, Allah ignores and excuses the one that i did. This is Allah, The Greatest, The Most Almighty, The Most Beneficent, The Most Merciful, and all praises belongs to Him.-Tariq Ramadhan"