Thursday, October 29, 2015

Blasts From The Past. And Future.

Lately I’ve been reconnecting with the past. A particular past, to be exact. I didn’t do it on purpose. It just...”came” to me... Yeah I know... Such convenient timing. At first I was hesitating because I didn’t see any good that could come from it. But then a couple of friends suggested me otherwise. 

They said that reconnecting with the past, especially the ones that are worth to embrace, might do me some good. It might help me to face the future. A better and healthy one. A lot of my friends even said that I should do whatever it takes that can make me happy. Whatever. They said I need it AND I deserve it. Haha :) Yes, I have SUCH loving and caring friends. 

Life is funny that way. Sometimes you're up, but then you're waaay down. You lose some, you win some. Apparently I've lost a lot memories, good and (fortunately) bad. But then I gain new ones and so far, mostly they are nice ones. I’m surrounded by loving people, you know. And I just realize it... NOW. There are a lot of people from my past who (still) care about me... And surprisingly those from the future, who eventually become my friends now in the present. Some of them I don’t even know personally but I guess I’m that lucky! A lot of people genuinely want me to be healthy and happy. 

So that’s what I’m receiving so far. Love and affections. Every day I’m showered with lovely words through phone calls and messages. A simple hallo, invitations to hang out, funny pictures, presents or even love poems and delayed confessions are also among the attentions I’m receiving every day. 


Who knew that the ones you used to ignore are going to be the one who “save” you today. And that the ones from your past are going to be the people who give you a better future. Saying that life is totally unpredictable is way underrated.

Tuesday, October 27, 2015

Missing Links

Lately I’ve been trying to collect the parts that have been missing from my memory chain. Based on my blog posts, the months of April and early May are missing. And no, I’m not making this up. I really don’t remember what went on during those period of time. That’s why I’m writing this. I’m hoping that you can help me because I really want to know. Why? Just for the sake of fulfilling my satisfaction. And...because to me not knowing about And hey, maybe it will do some good for my health :)

Let’s start with the first time I got sick. Hubster took me to the hospital and I had to stay there for several days. All I know is that I was admitted to the RS Premier Bintaro because I was suspected of catching the dengue. Which of course as we all know by now, it turned out to be a false diagnosis. Then I got out and at some point was admitted again but in a different hospital, which was Siloam Hospital. April is gone, no blog posts at all. In May there’s one posting only and that was on the 31st. Aaaaaand on that date I already wrote about what happened to me, which means that the major drama happened in.... Mid March - April until early May? 

NOW....!!! What happened exactly? I would love to know the sequence but it seems that all of *this* is quite traumatic for those who are close to me. It’s not very easy to get straight answers from them but I do want to know. So.... Do YOU know what happened to me? When did you found out? How did you hear the news about me being ill? Were you there in the hospital? Did you visit me? Was I awake or unconscious? What did you have in mind when you saw me lying on the hospital bed? Have you ever thought that I was not gonna make it? Did you hold my hand? Did I hold yours back?

Can you fulfill my curiosity? :) 

Tuesday, October 20, 2015

If You Care, I Dare

Read on about what I'm feeling about my disease... It just occurred to me that it really annoys me when I just had a seizure and people start to say things like “Take good care of yourself!”, “If you’re not taking care of yourself, who will look out for your daughter?” or something like “Think about the wellbeing of your daughter! Therefore you have to be strong, you have to be healthy!”, or “You are making your daughter sad, you know! A child shouldn’t feel or act the way your daughter does. It should’ve been the other way around.” 

And so on and so on and so on. 

Well, guess what?!?!? First of all I NEVER WANT MY DAUGHTER TO BE SAD BECAUSE OF ME!!!! I also never have any intentions to be sick around my daughter so that she would constantly be worried about me. How do you think I’m feeling when I see and hear my 7 years-old daughter crying because of me??? Does it ever occurred to you that my heart is breaking into pieces, seeing her burst into tears so sad while I’m holding her in my arms?? Not to mention also hearing she says things like:

“Bubu, you broke my heart when you have a seizure.”
“Can you hear my heart breaking?? It’s because I’m so sad you had a seizure...”
“Bubu, please don’t get too tired. You might get a seizure...”
"I wish I could get really small so I can get inside your body and fight the thing that makes you sick."
“Bubu, don’t have a lot of things in your mind or you might get a seizure.”

My precious Godsend has been encouraging me and saying things that a 7yo is not supposed to be saying to a grown up. Most of all to her mother. A mother should’ve said all those things to her child. Not the other way around. But again, it’s not and never has been my intention. And it really bothers me to hear people saying as if:


And most of all:

Well, guess what?!?! Saying things like “Don’t get too tired!” or “Go to bed early!” is really, really easy. But if you have what I’m suffering, it’s F U C K I N G  HARD!!! Do you think I want to be tired??? Do you think I don’t want to go to sleep early??? Only God knows how I miss enjoying a good night sleep!! Without any pain in the head, eyes-popping-out feeling and the body feels like it has been beaten up by a bunch of guys, or any kind of interruptions for that matter. But there are 3 options:
  1. I fall asleep but I wake up every 1-2 hours and having a hard time to fall asleep again
  2. I can’t sleep at all because of all the pain I’m feeling and suffering, physically and mentally
  3. I finally am able to fall asleep for hours but only after getting seizures. Because my body is already super exhausted.
The list still goes on but these 3 are the things that popped up in my mind most of the time, if not always. I’m trying to take care of myself, physically and mentally, by doing whatever it takes, you know... Well, as long as it’s legal of course! Because, no! I don’t want to be sick. And once again, NO!!! It is not easy to deal with it nor it is easy to do all the things you’ve been suggesting me to do. There. I said it. Now all of you know how I feel when I hear you say those supposedly encouraging things. You don’t believe me? Well, let’s trade places then! We’ll see how YOU deal with the things I’m dealing now. 

Thank you very much. 

Thursday, October 08, 2015


Bleib' wo Du bist. Komm keine Zentimeter mehr näher. Bleib' wo Du bist. Gib' mir Zeit an jemand anders zu denken. Bleib' wo Du bist. Ich möchte Dich nicht vor mir stehen sehen. Bleib' wo Du bist. Lass mich Dich nur in meinem Gedanken spüren. Bleib' wo Du bist. Ich möchte die Chance haben zu schlafen, ohne an Dich zu vermissen. 

Bleib' wo Du jetzt bist. Bitte. 
Und komm nur wenn Du hier bleiben kannst. 

Mit mir. Für immer. Und ewig

Wednesday, October 07, 2015

Doc Rocksy menjelaskan:

Kejang Vokal: hanya terjadi di sebagian atau satu lokasi dari tubuh dan pasien tetap sadar. Pada Kejang Vokal, listrik yang agak korslet di otak hanya terjadi di satu lokasi. 

Kejang Umum: korsletnya menyebar. Listrik bertegangan tinggi di semua lokasi otak, lalu di seluruh tubuh dan disertai tidak sadar. Twitching adalah bagian dari kejang. 

Perbedaan kejang - twitching adalah frekuensinya. Kalau lebih seperti kaget, itu belum bisa dibilang kejang. Itu disebut Gejala Abortif, akan kejang tapi tidak jadi. Sering terjadi pada pasien yang minum obat. Karena minum obat, kejangnya tidak jadi. Listrik di otak ada yang menahan, bentuknya kaya kaget, atau beberapa ada yang cuma bengong sebentar. Hal ini terjadi artinya pengobatan yang dilakukan belum optimal. Banyak pasien akhirnya bisa mengenali akan terjadi kejang atau twitching. Biasanya ada yang mengambil nafas dalam atau ada yang mencoba istirahat. Jadi kejangnya tidak benar-benar terjadi. 

Aura adalah gejala yang mendahului atau menyertai sebelum kejang. Misalnya rasa capek yang amat sangat, ada pasien yang merasa ada kupu-kupu di dalam tubuh, ada yang merasa mual, dingin-dingin, dan masih banyak lagi. Biasanya pasien yang sudah lama akan tahu dan mengenali gejala-gelaja ini. "Abis ini saya kejang nih!" Oleh karena itu banyak pasien epilepsi yang sudah bisa memilih dan mencari tempat yang aman. 

Terjadinya Aura, gejala Abortif atau sampai kejang artinya obat yang dikonsumsi belum tuntas mencegah kejang. Obatnya belum maksimal, belum mencapai target. Kita bisa menambahkan penambahan dosis, atau jika dosis sudah optimal tapi masih terjadi gejala-gejala ini, kita ganti obat. 

Pencetus kejang yang paling utama adalah pikiran, stress, cemas, khawatir. Soal pikiran, harus diberi ventilasi. Ventilasi artinya dikeluarkan. Ventilasi bisa memberikan 2 hal, bisa membuat lega atau justru bikin tambah cemas karena teringat kembali. Ini terjadi karena self defense kita ada 2: memaafkan atau melupakan. 

Pencetus kejang yang kedua adalah kurang tidur. Begitu kurang tidur, ambang listrik di otak langsung menjadi sensitif. Soal tidur memang harus disiplin sekali. 


Kopi tidak memicu kejang! #YEAY 

Tingkat keterangan/brightness komputer harus rendah. 

Setiap 2 jam, penggunaan komputer harus dihentikan. 

Kalau mau tidur, jarak dengan handphone sebaiknya minimal 3 meter dan paling disarankan dilakukan untuk anak-anak. 

Penggunaan handphone harus benar-benar dibatasi, terutama untuk anak-anak. Tahun kemarin sudah keluar hasil penelitian pada anak-anak bahwa radiasi dari handphone memang terkait dengan brain cancer. Artinya kita tidak bisa meremehkan radiasi dari handphone. Melalui gambar pet scan bisa dilihat sebagaimana besar radiasi dari handphone bisa merusak otak anak-anak.