Thursday, June 22, 2017

41


I'm still here. 
Holding on to dear life.
With my beloved families and faithful friends. 
And all the other things that I still being blessed with.

I'm still here. 
With not much words to say and share.
Yet my heart is bursting with emotions. 
Stuck until I guess only God knows when. 

I'm still here.
To hold grudges slightly and to forgive greatly.
Accepting the fact that world is not always sunshines and rainbows.
That enemies can turn into families and friends can indeed be enemies.

I'm still here.
Aging yet trying. 
Not only to have less life. 
But to appreciate more and take things less for granted.

41. 
Well, here I come.



Tuesday, June 06, 2017

Doc Rocksy Menjelaskan:

Bola mata sebelah kiri sempat tidak bereaksi terhadap cahaya selama beberapa detik. Meskipun kejang berkurang, kepala dan mata sebelah kiri masih sering sakit/tegang. Rasa dingin-dingin sekujur tubuh, gemetaran dan jantung deg-degan juga masih sering. Terutama kalau stress, kurang istirahat, berada di lingkungan yang tidak diinginkan/tidak nyaman atau karena kejadian yang tidak menyenangkan/trauma teringat kembali. Tegangan listrik di otak menjadi sangat tinggi/korslet. Hal tersebut juga bisa menyebabkan terjadinya deja vu. Masalah deja vu menarik karena pasien betul-betul yakin bahwa momen tersebut sudah terjadi sementara menurut lawan bicara belum. Seperti cenayang :)) Ngotot-ngototan bisa membuat kesal yang pada akhirnya membuat kepala sakit. 

Sayangnya karena tegangan listrik di otak yang tinggi, dosis Kepra harus dinaikkan lagi menjadi 500 mg. Ternyata selama 2.5 bulan ini dosis 250 mg terbukti tidak cukup. 

Memori masih belum bagus. Masih banyak kejadian yang lupa atau tidak mengenali teman/kerabat. Kemampuan mengingat jalan juga masih jelek. Di supermarket masih sering tersesat. Apalagi di tempat yang lebih luas seperti mall. Masih tidak bisa menemukan tempat yang sebelumnya sudah didatangi, meski cuma ditinggal dalam hitungan menit. Misal di restaurant dari meja makan jalan ke restroom mau balik lagi ke meja makan sudah lupa jalannya. Di supermarket dari lorong A ke B lalu mau kembali ke lorong A masih suka tersesat. Jadwal sehari-hari seperti seragam atau aktifitas anak juga masih harus menyontek buku agenda.

Olahraga: pilates paling bagus. Jangan yang high impact. Elliptical training jangan langsung dijalankan selama 30 menit. Harus bertahap, dimulai dengan 5 menit dulu tapi setiap hari. Baru dinaikkan menjadi 10 menit, 15 menit dan seterusnya. 

Monday, May 29, 2017

Dear Kukka: About Religion...

First of all I would like to thank you, baby girl... It's been a long time since my last post. I don't know why but I really didn't have the desire or ideas to write. Not that there wasn't anything interesting going on... I assure you there's a lot! Especially having you and SiBapa by my side :)) Anyways now that "itch" on my fingers and brain is back. Thanks to you. And there's this thing I want to write about.

I can't exactly recall when this all begins but lately you've been asking me a lot of questions about religion. It's quite...surprising because before that you've been asking me a lot about sex. Now? Still but not that much :) First I thought it's because now is fasting month. But then I keep thinking... No. You've been asking me about religion even before the fasting month began. I think it all started because you were so lazy to shalat :)) And once I found out that you were lying to me. You said you already did shalat but I knew for a fact that you hadn't. I warned you not to lie to me again because eventually I would find out (I saw your mukena was still on the same position as before). I told you again that even if I didn't know that you were lying to me, ALLAH SWT would know. You asked me how. I said "Because ALLAH knows about absolutely everything. Before you even have THE INTENTION to lie to me, ALLAH already knows. ALLAH gave you free will, a very smart brain and a very pure heart to make the right decisions. So it's all up to you. Are you going to get points for doing the right things or commit sins for lying and cheating. Your call." You were absolutely in awe :))) Then you asked me about heaven and hell. How heaven looks like and what happens to humans in hell :))))

So yeah... Since then the questions keep on coming. Some made me laugh into tears & some were too difficult to answer. I even asked you for the chance to google first :)) Especially when you ask me about the surahs I read in the Al Quran and the stories about the prophets. I don't know if I ever asked my mom those kind of questions when I was 8 years old. Too bad I can't remember all of your epic questions but some, fortunately I do. Like the ones you asked me in the car today. While laying down on my lap, looking tired and hungry but still with curious eyes, you asked me: "Bubu, why does ALLAH tell us to fast?". I tried to give you a simple explanation. You listened to my explanation and nodded. You also asked me about Hindu, Buddha, Catholic, Protestant, Jesus and "Why does that god look like an elephant?". And after you saw the pictures, you insisted that Hindu's god is a woman. After a while when I thought you were sleeping, you asked "Bubu, if every religion has different god, it means that there's a lot of gods, right? So which god should we believe in? How do you even know that Islam is the right religion?"

I was like... Oh, baby!!! Isn't it too early to ask me these kind of questions??? On an empty stomach too!!! :)) I could even see the big grin Mas Ari had from the rearview mirror! At that time all I could was hugging and kissing you. But after giving you a simple answer, I reminded you again (and again and again) that you could come to me and ask me about ABSOLUTELY ANYTHING. That nothing is off limits between us. And if I don't have the answers yet, please give me time to think and to look for them. You said "Okay, Bubu. I love you. And I know that you love me too..." 

Yes, baby. Because that is what matters the most. And then we kissed and hugged...


Thursday, April 13, 2017

Dream, Dream, Go Away. Never Come Again In Any Other Day.

Have you ever had a dream that is so, so sad, you wake up having actual tears in your eyes? Then you couldn't stop sobbing and panting for quite a while... Not until you finally realized that it was just a dream. A sad one. A very, very sad one.
 
Lately I've been having that kind of a dream. Or should I say a nightmare? I don't know why... Sadly (or luckily?) I couldn't really remember what the dream was. Not always. All I can remember that it always involves me losing someone I love. Once it was about the death of someone who I loved very much and the saddest part is... He is actually already passed away. It was like experiencing the sadness all over again... Another time the nightmare was about me...losing my mom...
 
There is one particular dream that I do remember though. Even to this second. I guess it was THAT scary and sad to me... It was about Kukka. We were in this big and empty building... I held Kukka's hand and we were trying to find out how to get out. The building...or was it an old, creepy house? It looked like a typical old house or abandoned building that you see in horror movies. Anyways... Suddenly, somehow Kukka was gone. When I looked at my side and I looked at my hand, Kukka wasn't there. I wasn't holding her hand anymore. I started to panic. I ran in and out of the rooms inside that big empty building. I screamed and called Kukka's name like million times. Nothing. All I could hear was the echo of my voice, screaming my precious godsend's name. I was out of breath and sweating like crazy... And then I woke up. Crying, sweating, panting, out of breath. For real.
 
The first time I had this kind of nightmare I immediately ran to Kukka's bedroom to check her out. I was so relieved when I saw her still sleeping safe and sound. I hugged Kukka and I started to kiss her until she almost woke up. Then I stopped. I couldn't keep my eyes off of her sweet face. And while doing it I remember that I was still crying... But I guess it was tears of happiness. I was happy that it was just a dream... Well... Happy is not the right word. Because even though it was a dream, it did drain my energy and my emotion. And it's not a very nice thing to feel.
 
Unfortunately that was not the first and the last nightmare I had. As a matter of fact, I just had one this morning. And again, I woke up in tears, still sobbing and panting. Luckily Hubster woke me up and asked me to sit with him on the patio. Just like that I stopped sobbing and woke up like nothing happened. Perfect timing, Schatz :) What was the nightmare about? Luckily I can't remember the detail. But like I said. It was about me losing Kukka. Again.
 
Man, this sucks. Why can't I just dream about something happy? Like... Well I don't know... Traveling around the world? Suddenly speaking 10 languages fluently? Magically being able to make beautiful paintings? Being able to go back and forth to the past to fix the future? Anything! Anything but about me losing my precious godsend. That one dream, I tell 'ya! It really is the one that I wish would never ever come true. 
 
 


Monday, April 10, 2017

Doc Rocksy menjelaskan:

Otak adalah bagian tubuh yang paling misterius dan paling complex. Memori yang akan balik lagi sangat acak. Tidak bisa ditebak atau dikira-kira. Memori sebelum-selagi-setelah sakit sebetulnya ada, tersimpan, terkunci di dalam otak. Tapi belum tentu bisa dibuka. Kalau pun terbuka, tidak bisa ditentukan kapan/yang mana yang akan diingat lagi. Sel-sel otak yang rusak dalam waktu setahun ke depan akan recover/regenerating.
 
Masalah memori: ada yang membaik, ada yang sama saja. Bahkan hasil tes untuk short term memory ada yang masih kurang bagus/sedikit memburuk. Hari, tanggal, bulan dan tahun masih sering mencontek. Sebaliknya, kadang kejadian yang sudah lama, dikira baru saja terjadi atau tidak diingat sama sekali. Mungkin memang ada kejadian-kejadian yang sebaiknya dilupakan? 
 
Kejang: masih random. Biasanya diawali dengan mual, ingin muntah, mata melotot/blank dan rasa dingin secara mendadak. Terutama yang muncul akibat masalah pikiran. Kejang yang disebabkan oleh cape fisik sudah membaik karena sudah bisa "menakar" kemampuan diri sendiri. Kalau seharian sudah beraktifitas, besoknya sebaiknya istirahat total. Yang masih berbahaya adalah kejang yang disebabkan oleh pikiran. 

Jika tidak terserang kejang dalam waktu setahun ke depan berarti sudah boleh tidak minum obat lagi. Sementara ini obat masih harus dikonsumsi sampai 2018. Terapi Canabis Oil: untuk pasien penderita penyakit Parkinson, yang secara fisik kaku. Bukan yang bermasalah dengan ingatan. Tidak dianjurkan. Kalau menjalani terapi ini nanti justru jadi "terlalu santai", stoned, tidak berusaha mengingat. Padahal justru otak harus terus dilatih. Menulis diary/blog dan membaca buku adalah kegiatan yang sangat bagus. Usahakan jangan mencontek catatan! Sebaiknya lebih sering berkumpul dengan teman dan keluarga yang bisa memberikan masukan positif, jalan-jalan sendirian, kerjakan lagi kegiatan yang dulu sering dan senang dilakukan. Hal ini baik untuk melatih ingatan dan juga mengembalikan kepercayaan diri. Konsultasi dengan psikolog adalah salah satu terapi yang baik.

Analisa pribadi: jangan-jangan kejang muncul lagi justru karena memori semakin membaik? Jadinya teringat kejadian yang tidak menyenangkan/menyedihkan/mengesalkan, yang justru membuat kejang dan sehabis itu jadi lupa lagi. Lah terus jadinya gimana dong???? LOL LOL LOL!!!!! 
 
 
 

Tuesday, February 14, 2017

Girl Talk

Okay. Let me breath in for a while. Inhale. Exhale. Okay. People, the time has come when my daughter likes to ask me lots of questions that involves “grown-up stuff”. Yup. My daughter is 8 years old and she has a very curious mind. Being a very, very smart girl that she is, just like her Opa, Aki, Bapa and Ua Eza, it’s actually a no-brainer that she has a lot of questions in that super mind of hers. You see... Lately Kukka and I have been having conversations which she called "our girl talk". It usually starts with "Bubu, I have a question. But don't tell anyone! This is just for you and me. Our girl talk." And then we shake hands. So, you see. The conversations are top secret :) What I can share to you is that my precious girl's questions are difficult ones. Difficult as in... Well... If you're a regular reader of my blog, you'd know that months ago I had to explain to Kukka about animals mating. It was...quite challenging. And hilarious! The convo occurred because of the “drama” that happened between Blob-Blob and Fluffy. Check out my previous posting if you want to know. 

Then there was this one night, during our usual bedtime convo, Kukka asked me questions that made my eyes got wide, my jaws dropped and finally... The questions made me laugh. Yes. I laughed so hard while hugging her. I must confess though. I was hugging Kukka because I was buying some time to figure out what and how to answer her questions. I was and still am not ready for this. I mean... Come on?!?!?!? 8 years old?? I thought I still have 10 more years to have that kind of conversation with her. But apparently not with kids nowadays. Especially with a very smart and super curious child like mine. Objectively speaking of course. #proudmother 

Now... Because of her challenging questions, whenever Kukka gives me a question that I can't answer (right away), I ask her to give me some time. Afterwards I'll be googling like crazy. I'll also ask my closest friends how to explain to Kukka the correct answer, in the most decent and age-appropriate way. Why? Because I don't want to be a parent who just gives an answer without even thinking how it would later impact my kid. The way Kukka thinks, how she behaves, how she treats other people and so on... I believe it depends on how my husband and I show, teach or explain things to her. Kids nowadays are way more curious. I should be grateful that Kukka comes to me and asks me personally whenever she needs/wants an answer or any kind of information. Many kids search for answers by themselves and lots of them are...misinformed. Why and how? Google and cellphones. Yup. I just found out that many kids are allowed to use cellphones...without adult supervision. And on school days too! Kukka? Weekends and holidays only. Youtube kids channels only on certain hours. Instagram: pictures edited and uploaded by SiBubu, messages/chatting read and personally replied by Kukka only on holidays and weekends. Obviously, EVERYTHING, EVERYDAY is under SiBubu's supervision. Strict? Maybe. But I think it's very important and necessary.

Anyways... I use this moment... This phase... As an opportunity to tell Kukka that she can come to me ANYTIME, to talk and to ask me about ANYTHING. Absolutely anything. No limits. That it’s better for her to come to me than to anybody else. And that there’s nothing to be embarrassed about. So does she? Come to me and ask me about stuff since then? Oooooooh you bet she does!!! :)))) Like what? Oh sorry, guys! TOP SECRET. But if I could give you some examples... Last night Kukka asked me what does *this* mean (*middle finger*) and what does the F word mean. I was shocked. Obviously. But I tried to calm down. Then like always, first I asked her where did she see/hear it. She didn't want to tell me (My daughter is not a rat/squeal. Noted.). She just answered "Somebody said it at school. Just somebody. Not to me. Don't worry, Bubu." Later on, after doing some very, very careful thinking and choosing the proper words, I explained it to Kukka. This is just one example. There are so many comments and questions from Kukka that I can't write them down here :) But one last thing that I can share to you is my feelings.

The feeling of being a very, very grateful person. The feeling of being a very, very proud mom. The feeling of being a very, very happy parent. For having the honor to be the mother of such a beautiful, smart and precious human being whom I can call:
 
"MY DAUGHTER".



Sunday, January 01, 2017

Bring it on, 2017!

As I’m writing this post, it’s already 00:32 in January 1st 2017. I’ve just realized that I didn’t write anything in December 2016. My last posting was November 24th. That’s not good. Not for me. It’s like I’m losing the only thing that I love to do, which is writing/blogging. I’m not sure why. It’s not like that nothing interesting is happening. But if you ask me now “What-Where-Why-Who-How”... Mmm... I can’t answer it. I have to cheat first by checking out my twitter, instagram and path accounts. #LOL. But what I do remember is that...

My health is getting steadier if not better. Partly because my awesome doctor has figured it out why and when I would get seizures. So yes, my seizure is now “controllable”. And also my appetite. The new pills don’t make me want to eat like every second. All I have to do is taking my pills on time, get enough rest and no stress. Yes. The last part sounds awfully cliché. But it’s true. Because as far as I can remember, the second I worry or overthink about something, my body starts to shiver, my hands shaking and that annoying nausea starts to attack my tummy. And don’t get me started with that awful and strange headache. It’s not just about the pain. It’s that disturbing...feeling of being there and nowhere. You can’t make up your mind what to think, where to be or what to say. You know those swirly scenes in the movies when a person falls into a limbo? When a person just kind of floats around in the middle of nowhere, along with lots of stuff like chairs, tables, books, cats, glasses etc? Yup. That’s how it feels like. No matter how hard you want it to stop, no matter how much you want to...”land”, you can’t. That’s how it feels like. But yes. Now I can control it much better than before.

Besides getting much needed rest, I also try not to give a lot of shit about things that are...shitty anymore :)) I’m trying. But like I said many times before. This illness of mine is some kind of a hidden blessing. Why? Because there are a lot of shitty, sad and awful things that I don’t/can’t remember!!! So yes. It’s not that I don’t want to think about it. It’s because I CAN’T!!! #LMAO Now if that is not a blessing, I don’t know what that is. Hmmm... What else? Oh yeah! I just remember that on January 2016 I did blog about making resolutions! Okay let me check them out. Oh and please do notice that striking one resolution out doesn’t mean that I did it and then stop doing it. It could mean that I already did it and I have to keep doing it and be even better. So let’s see:

Love.
Smile.
Rest!!!

Forgive.
Apologize.
Exercise!!!!!!!
Make it happen.
Write every day!!!

Be brave. Speak up.
Judge less, help more.
Spend time with Kukka.
Shit happens. So what!??!
Accept my flaws. And others.
Listen to my body, soul and heart.

Meet my friends in real life more often.
Make lots of phone calls. Use less chat apps.
Embrace my old self. Yes. The fun part that is.
Do whatever makes me happy. Yup! WHATEVER.
Do crazy things sometimes, or often, IS necessary.
If shit happens, sit back and relax. Let life do its magic.
Make new friends, stay in contact with old ones and maintain.
Haters can kiss my ass. Lovers do come, let’s smooch and hug.
Never lie to my daughter. Teach her to accept the truth instead.

Read, remember, read again, recall and actually do all the #frikis2016, which now changes into #frikis2017

Any changes? Anything new to add? Hmm... Let me see...

Laugh!!!
Dress up!
Be more confident.
Cook (almost) every day.
More girl talk with Kukka!!!
Lose weight!!! At least 10 kilos!!!
Embrace my old self but less crazy!!!
Talk to Kukka in Bahasa Indonesia & German.
Don’t push myself too hard to remember the past.
Create better, healthier and more awesome future instead!!! 

HAPPY NEW YEAR EVERYBODY!!!! :)