Jun 29, 2017

The mysterious NMO

New year.

Another hopeful year (My real post starts here).

Alhamdulillah. People have told me how well I 'm coping and how they couldn't have done the same in this situation. I wonder, did they understand my disease? I don't know. I don't see that way. I had my moments of breakdown too. I researched, and had my moments of thinking about the worst thing.

Last few months were horrible. 

I suppose to start my treatment in few hours when my world started to twist. Both of my eyes began to twitch out of sudden, and the vision became muzzy. That time, I felt like I had to put my face on the paper, just to sign a document. Even the biggest letter on the board, I can't seeee it T___T I started to panic!! My neurologist immediately sent me to the ophthalmologist to ensure my eyes were examined.

Since that moment, I was started at a very high doses of steroids. I got three days of steroids via the IV. After that, 10 tablets of steroids everyday. Ten ok! Ten! Recovery had been very slow. My body weight increased from 44.5 to nearly 57 kgs in a blink (the side effect of steroid). I was in that condition for nearly six months before things slowly getting back to normal (It was so tiring to answer all the questions and plus, to entertain the stupid jokes from everyone during that time).

I have started working since last three months. So far, so good. It has been one year since the first (the worst) attack. I am now can only hope and pray that the chemotherapy that I have to take twice a year do its job, so that my body remains neurologically stable.

Looking through the gallery, I started to complete the puzzle. Just to reminiscing back how does it all started, I finally had the courage to write and post my story.

Another long story after this. I 'll update later.

(My eyes hurt)

Jun 12, 2017

So now what?

I rejected the Public Bank offer. They even insist on giving me another offer for the next term (which means I have to postpone my study for one semester), which.... I can't tolerate with that one. I 'm not going to postpone my study now. There is only one semester left. NO.

I 've to set another plan on what should I do at the moment. Most important, the degree must be finished on time. I 'm doing my industrial training in TNB now. Basically, the place is nice. Full of kind-hearted people. In fact, I have started writing my thesis (Thank you to my sister).

Well, so far, I 'm still living my normal life. I wake up in the morning, go to the office, come home at 5, and the list goes... making me consider myself exceptionally healthy. Somehow, the lacking of movement that I felt past few weeks is gone. I can walk properly now.

Whatever it is, I am largely over it now.

Moving forward.

I am so grateful. There has been no moment in these past few weeks that I have felt alone. I am blown away with the support system that I have. My mother is the one who is diligently accompanying me at the hospital. My father who is willing to stay behind after his office hours, coming to the hospital just to make prayer for me. My sisters who are willing to take turn waiting for me. & not to forget, my friends and A that never forget to ask me how I was feeling every day. I feel supported.

Knowing that this entry is very personal, but I as I 'm writing this, I feel the big burden on my shoulder is lifted off. I am hoping that writing and sharing my experience here will help me to go through the process. 

Jun 9, 2017

Setting aside the dreams

**Postponed Entry**

Doc: Have you received my email?

Me: The case summary? Yes.
Doc: Please come to the hospital. I 'll explain.

Me: ....

I am sick. That 's what the doctor said. There is something in my head, which they too still unsure what 's it. What I remember distinctly, was when the doctor examined me last two weeks, he said it was just an ambiguous case. But now.. he starts explaining how I need to see a specialist from neuro-medical dept. (He confirmed that it was not tumor) and he would put the referral in.

Neuromyelitis optica. Out of all the explanations given by the doctor, the thing that  I only understand is it is something rare. Almost similar to multiple sclerosis. The ratio is 1/2 : 100 000 population in Malaysia. I felt the blood rushed to my head now. My adrenaline pumped so hard, and the fear starts to creep in.

I don't cry. In fact, I can't cry. There are no tears that want to come out of my eyes. The only thing that in my thoughts now is only regarding my place of internship. I am supposed to do my internship in the Public Bank Training Centre. I 've confirmed with them. But, with this sickness, there's no wayy that my parents would allow me to go.

Do I have to set aside my dreams now?


Dec 15, 2016

My dramatic father.

***Postponed Entry***

Back to campus, finally. As expected, I screwed up my Global Marketing test yesterday. It was so frustrating T___T Regarding my health condition, I 'm still pretty weak. ...it feels like... I can't work hard as before. Two weeks to go before my final examination starts.... and I am soooo worryy now.
Despite of my weak condition, I managed to celebrate my father's birthday last week. It has been planned earlier, so no excuse for not doing it. Plus, my father has a very high sentimental value. Not celebrating his birthday means you have to deal with him, sulking for daysssss. haha.

I have always been excited to throw party to others, but I think I am still not qualified to be an event planner (Not creative enough, maybe). The thing that I enjoyed the most during a party is regarding the props. Ah, don't be surprised if I start a business on selling party props one day! hehe, since it is quite hard to get all the party props in Kelantan. There is only one place that I know, selling party props here, and they are quite expensive! See, I even have my own treasure box (More to recycle box). haha.


We ended our party with a dinner together. This maybe the last party for this year (even though Alah's birthday is two months from now. haha) Towards more surprise party next year! Hehe. 

See, my father's status on facebook today. *cries a bucket* #Teamabah

Oct 4, 2016

Heart purification

Out of the reasons, I feel empty. It is just like, there is something lacking. And, the weirdest is I haven't shed any tears out since three months ago (?). Not a few drops of salty water from my eyes. I am afraid. Is my heart sealed? You know, a person with a sick heart will never react to the needs of other people. He does not care if his brothers and sisters are afflicted by hardship. The thing that he really care is only about himself. Ah...... Thinking about it, really gives me goosebumps.......

Remembering on what my father always said in his tazkirah, “The heart will be subjected to trial after trial, and there will appear a black stain on any heart that is affected, which will spread until the heart is completely black and sealed, as it were, so that it will not recognize any good deed or denounce any evil, except whatever suits its own desires.” (Reported by Muslim).

Oh forget to mention, I am at home now. Since I am on medication, a lot of changes had to be done on my original plans ie my practical placement and whatever (I 'll update this one in the separate entry. Later). Well, being at home at the moment, so no excuse not to follow the parents rules. Mom used to force me to accompany her to the mosque and I went when I could (when I feel like I want to go. hihi). Plus, looking back at everything that had happened, I think I have to find ways to overcome it.

 And it happened that the particular topic at the class that I had attended was regarding our attitudes during the pain and suffering happened. After thoroughly addressing the introduction of the dimension of the Kitab Penawar Bagi Hati, which he explained that Tasawwuf is the path to self-purification (membersih segala anggota zahir). But, although it focuses on the inner feelings, the other parts of the body also have to be responsible too.

Seven parts of the body that are clashed their upright and evilness:

1. Eyes

2. Nose

3. Mouth

4. Ears

5. Pubic area (Faraj)

6. Stomach

7. Hands & legs

Interesting question that being asked by the ustaz, why does we always go back to Allah when it is already late ? When there is something happened, we will seek for physical excuse, this is because of this, because of that. Yet, we actually know everything that happened is from Allah. Why we are so late to see Allah in everything........ The ustaz even said, to show He is more powerful than you, Allah sends some weird event to test you (The translation of Al-Kahfi: Story of ashabul kahfi), to see how we cope with it. To see if we will turn towards the straight path or away from it.

I was slapped by the teacher's words. Mann, this is me. When I was diagnosed with the rare disease, I am influenced by the people around me, a lot of things crossed in my mind. Because of continuous fever, stress, & even over-striving for excellence (People see me as the perfectionist. Working hard all the way. hua). I never think of Allah at first place. Ya Allah so horrible of me to think that way. It was then that I started truly understanding the ways of Allah, how everything that happens has a purpose (It doesn't matter I know or not what the reason is)..... and that I am supposed to learn from that.......

Sep 28, 2016


Alert: Postponed entry, as well (This entry was written last March)

 Yeay, fifth semester has just started! Which means, this is the final semester in Kedah. & That's it, I 'm done with here after this (Can't wait!). This semester will end in mid-June, and I am going to start my practical in July. After all, I 'll be finishing my degree studies in this December. Ah. Finally. After all the rains and storms, there comes the sun.. My result last semester was pretty good. It was crazily unexpected. My gpa increases! I am in a very high spirit now. But, of course, I still need prayers from everyone (Please include my name in your prayers). 

 Whatever it is, I really want to enjoy this semester. No pressure. 

 Ok. The main entry starts now. (Beware: Quite cheesy you know). This is my first time writing things like this. But I can't help this time! Haha. A's birthday was in January, meanwhile mine in February. As usual, we just wished each other through sms/whatsapp, talked about some little things, and off. Bye. No celebration. No gift-giving. haha. Oh, never use the free phone calls too. hihi. So lame! 

 This year, since his birthday fell in the semester break, we decided to see each other. And, I was just thinking it 'll be quite weird seeing him without bringing something. But, I really don't know what to buy. haha. So, the easiest, I bought him chocolates, add on with a little prank. I cut words in pieces and asked him to solve it. 12 words. haha (I forgot where did I save the photo. I 'll upload later ok). Regarding the puzzles? He is so straight. Obviously, he failed to solve it (even though he actually solved it). huahua. 

 We met three times during these two months of semester break. One for the celebration of the semester break, one for his birthday, and of course another one is for mine & farewell (more to farewell, actually. Since we rarely celebrating our birthdays). huhu. I am not expecting anything, but he prepared something for me too this time. And, it was so funnnyyyy! 

 As I am hoping for something like this:

Reality: He did it like gift-swipes. Urgh this guy, I gave him chocolates, he replied me the same. With add-ons: A planner, Manchester United jersey (tak muat!), a potrait drawing (wuu). And puzzles too. Panjang pulak tu! -___-

If only anyone can solve this, please ?

 I gave up already. Until today, both of us can't never solve the puzzles. He can't solve mine (Theoretically, he replied. haha). Because my words were actually REPLY LA BALIK (12 words. haha!!).

 Tak apa lah kan, it is the thought that counts. Xx

Jun 11, 2016


***Postponed Entry***

I am at the weakest point now. It has been my fifth day at home, but I do nothing so far. Works are still untouched, books are still in the bag. Argh. So frustrating. & Now, I 'm just trying to find some strength by writing something down here. I was just discharged from ward yesterday and of course would not want to be warded again in the nearest time. But. I don't know how long I can stay.... :(

It was just lucky I managed to reach home safely. Kedah-Penang-KL-Kelate. Phew! I had interview for my internship last Thursday. Thus, I tried hard to hold myself from being flaccid and it was really my rezqi that day as they called me straight away telling me that I 'm accepted for the internship place (They promised me they would call me within 2 weeks). wuhuuu! It was worth to pull my luggage to the office, being interviewed by them for almost 40 minutes...... (surprisingly, I speak no Malay all the way!), and walked alone by myself seeking for the train and what so ever.

At first, I thought I was infected with dengue. The chill feeling and headache were so terrible, but it was impossible as there were no red dots all over my body. I just knew there was something wrong with my body when I woke up during Tuesday morning with one of my worst hangovers ever. Too bad, I had final assessment that evening and my lecturer just didn't want to believe in my excuse. hua!!

I managed to hold myself at home for two days before I asked for my mother to bring me personally to the hospital. I can't stand it anymore. My symptoms included pounding headaches that lasted all day, cold chills in 90 degree weather, can't eat anything as I would like to vomit and severe muscle pain all over my body. I was in a total mess! I even felt that I was hallucinate. Scary.

Hyponatremia. That was what doctor told me. In easier words, disorder of sodium balance. My body lacked of salt. What I understand now is hyponatraemia almost always reflects an excess of water relative to sodium, commonly by dilution of total body sodium secondary to increases in total body water (water overload). In our body, it should be much less 155-160 mg/l of sodium. Meanwhile, as I went to the hospital last two days, there were only 117 mg/l of it in my body, which causing me to have headache, lethargy, and restlessness. The worst was I ate nothing. Everything made me nausea.

Yesterday, my horrible fever was gone.The headaches were gone. I felt better. In fact I felt so good I decided to accept visitors. I even managed to call the internship offices and settled some of my works, which making a concrete reason for doctor to discharge me. 10 bottles of sodium water had been injected in, but why my body starts to ache back today............ I don't want to be warded anymore...... I haven't read anything until now.. If things are continuously like this, I am going to screw my global marketing test this Wednesday T___T Pray for me guys!!


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