Wednesday, November 04, 2020

Doc. Rocksy Menjelaskan:

I forgot to record the session (again) so what I'm writing here is a more-or-less and conclusion things :)

1. First mistake: I made the appointment at 11am. Knowing that I was going to take some kind of a test, 11am is too late. DON'T DO IT AGAIN!!!

2. This time I did remember to give the stickers to the nurse, letting The Rocks know that I was already in the waiting room. Thank God! :))

3. The Rocks wasn't very happy when she saw my Buku Harian Epilepsi. "Wah banyak sekali kejangnya!" she commented. I was... Well... All I could do was grin and said "Yah... Gimana dong..." My "self-defense" was that the seizures happened on the timeline during Kukka's exams and graduation from elementary school. Followed by a couple of exams and acceptance to junior high. Also because of Bapak's passing... Yes... I'm still very sad about it. I told The Rocks (in tears) that I still cry whenever I remember Bapak. As a matter of fact I'm shedding tears like...right this second...

4. The COVID-19 pandemic. I'm sure I'm not the only one who is stressed out because of it. Why am I stressed out? Well... Obviously I'm sort of disappointed that Kukka still can't go to school and make new friends in person. This whole School From Home thing is not good for my kid (yours probably too...). She's spending more and more time looking at screens, computer and cellphone, because she has to (and of course she's enjoying it very much -_-). Another thing that pisses me off is I can't go and enjoy my weekly pilates session with Mba Ira :( Believe it or not I really miss pilates. Not only the session but also the me-time I always have when I go to Perfect 10. Having coffee and snack before or after the session in random cafes, enjoying all the way from home to Dharmawangsa Square. And many other things. Being in constant fear, uncertainties, paranoia, disappointment and anxiety because of this god damn virus makes me... Not very well. I told The Rocks all about it.

5. I took a memory test yesterday and it was EXHAUSTING!!! I forgot the doctor's name who did the test with me. How ironic :D It was a young man and he was very nice. The things he said and the way he explained the tests were very clear. The young doctor was very patient too. But I think when I started to have a minor seizure during the test, he looked kinda... Worried? Well excuse me, doc! But I was in the hospital from 10:38am - 3:09pm!!! What do you expect? :)) Young doc immediately called The Rocks, who still had a patient with her when I started to shiver. The seizure ended when The Rocks came. Couldn't explain anything to her but the young doc did that already (probably even better than me). As conclusion: it was because I WAS EXHAUSTED. And to make it even worse the tests scores are not so good. Oh by the way the memory tests' names were MMSE and MoCA

6. Homework from The Rocks: continue the daily afternoon walk, which she thinks is a very good thing (as long as I have someone with me and I'm not tired). Also the blogging, writing project and keep on drawing! Because my memory is getting worse I have to read a book. Preferably a book with short stories or an article and then write a review about it like 1-2 pages based on what I remember. NO CHEATING! :p

7. My beloved doctor said that she has another patient who has the same illness like mine and the patient is pretty depressed about it :( Then somehow her patient came across/being told about my blog and has been reading about my "adventure". Somehow my stories is helping the patient. Good to hear :) Then The Rocks started to go on about why me not making some sort of a community that can help each other. Hmmm... Okay doc... I'm taking it into consideration :) I mean I can hardly remember what to do tomorrow :)) How can I take care of a community???? 

8. Tegretol's (white pill) dose is changed (back?) to 3 times a day because of all the seizures I'm having :( 

9. Next exam February 2021: Lab and abdominal CT Scan. She told me we already did it (5 years ago when I was submitted to the hospital) since one of the causes of Autoimmune Encephalitis is a tumor in the abdomen. The Rocks told me that the next one is not a must. More like an evaluation. Should I?

Anyway... November's session is done. Very long but pretty okay. It took hours and hours and it made the maids AND Ari, the driver, very worried. They kept sending me texts, asking me whether I was okay and where I was. The maids and Ari got even more worried because I didn't reply any of their texts :))) At the end of the day I managed to go home with a light heart and a pretty calm mind. And when I arrived at home I slept and I slept and I slept like the dead. 

I would love to end this post with a major thank you to my favorite doctor. And this time I didn't forget to take our 3-monthly picture!! YEAY! :)

Friday, September 11, 2020


SUDEP: Sudden Unexpected Death in Epilepsy. I didn't even know there's such thing until I found a mother on Twitter with the username: @bugsme012 who tweets every single day:

"Every day in memory of my son and every victim of SUDEP"

I think I found her twitter because @BrainAblaze retweeted the tweet and I'm following @BrainAblaze... Then a couple of days later I heard the news that a certain young celebrity passed away because of SUDEP. Cameron Boyce was only 20 years old when he died because of complications of epilepsy. He died in his sleep after a seizure... And then I was like "Huh??? You really can DIE in your sleep after a seizure???" After that since Anti-NMDAR Encephalitis is pretty much related to epilepsy, I'm starting to dig more about what SUDEP is.

Apparently according to Know SUDEP Now, Sudden Unexpected Death in Epilepsy, while rare, can occur when a person with epilepsy dies because of a related accident or seizure emergency. You have an increased risk of SUDEP if the tonic-clonic seizures in your sleep are uncontrolled and you sleep alone. Snow I know WHY there are times when I wake up drenched in sweat and panting heavily as if I just run up and down the stairs for 2 hours!!!! Yes, it happened. I have a seizure and then I fall asleep. But I wouldn't know if I don't wake up with my tees soaking wet, my pillow has a giant drool island or some body parts hurt (because I hit something accidentaly). There are also times when I just wake up in shock and ask myself "What the fuck just happened????" SUDEP occurs more frequently in people whose seizures are poorly controlled though. So hopefully when I take my medicines on time and avoid stuff that can trigger seizures umm... I guess...I'll be safe? Fingers crossed! Avoiding the physical stuff is easy. The emotional ones on the other hand... 

Sleep seizure or also known as nocturnal seizure disrupts your sleep and makes you dizzy during daytime, which can increase the risk of seizures. Why? Because lack of sleep can also increase your chance to have seizures. Unfortunately going to sleep is not that easy for people with epilepsy. Why? Oh it's complicated :)) According to Epilepsy Action Australia, diagnosing nocturnal seizures can be difficult because they happen during sleep, and the person may not be aware of them happening. Yup! That's true :)) It even happened to me during EEG and I didn't know! Of course my beloved dr. Rocksy already explained to me these types of seizures. Unsurprisingly I forgot all about it BUT fortunately I already blogged about it :) (Doc Rocksy Menjelaskan) Now I've become aware of this SUDEP thing which turns out to be...possible. I wonder why dr. Rocksy never mention about it to me though... Or maybe she did??? 

Anyways... Now I understand... No wonder my daughter and the maids like to check up on me when I'm sleeping or just chilling in the bedroom. Kukka would get close to me while I'm lying on my bed and she touches my arm or just calls my name. Sometimes while we're busy doing our own things, Dewi would knock on my bedroom door, calls me and takes a peek. Or Kukka would just screams out my name from her bedroom using that loud and cute voice of hers :) Apparently I had seizures during sleeping and my daughter witnessed those moments. My poor baby must be quite traumatized :( I talked about it with Kukka while I was writing. Her response:

"Now I'm calmer because I know what to do to help you." -Kukka-

How can I NOT love her THIS much. My beloved precious godsend :*

Tuesday, September 01, 2020

The New Normal


What does it mean exactly? I guess everybody has his/her own opinion about what is normal. It's a subjective matter after all. Especially since this horrible pandemic began. According to Wikipedia: new normal is a state to which an economy, society, etc. settles following a crisis, when this differs from the situation that prevailed prior to the start of the crisis. The term has been used following the financial crisis of 2007-2008, the aftermath of the 2008–2012 global recession, and the COVID-19 pandemic.

Yeah... It's the Corona virus guys... Real. Hoax. Self-quarantine. Mingling in a crowd. Mask. No mask. I heard that there's even some big conspiracy theories about the COVID-19. Whatever I don't know... #bigsigh What I do know for sure is that I don't want to gamble with life. Especially the lives of my loved ones. My families and my Precious Godsend in particular.

Avoiding crowds might be a little bit tricky for some. Especially for those who eventually have to start working outside their homes. But it sure is stressing me out, this -fromhome thing. I miss doing unimportant things outside the house. I miss my friends. I miss picking Kukka up from school. I miss our pizza time before her Skaci class. I miss going to the movies. I miss my pilates session. I miss just sitting around and enjoying a cup of coffee in a small coffeeshop. I miss my me-time outside the house. I miss having lunch with my BFF. I miss a lot of things! Unfortunately as a person who suffer from an autoimmune disease, which makes me even more vulnerable to catch COVID-19, I have to be extra patient and super extra careful. The risk is too high. Not only for me but also for everybody around me. Then again, stress is very bad for my health :)) 

So for my well-being I still go out even if it's as simple as driving around Bintaro. Or just relaxing on the patio, enjoying the weather with my girl, SiMoochi and SiBapa. I let all doors in our house wide open to get some fresh air. SiBapa's team also still come to our house and work and do whatever it is that they do up there :)) In some weird ways I do enjoy having SiBapa's team working here :) What I'm trying to say is that we are not being paranoid to be with other people. Once or twice we also go out to meet our parents. Making other people happy can also make you and others healthy you know :)

So yeah... Again. If it's as easy as wearing a mask which can save lives and at the same time can let you live a new normal life, then what's the hold up? Uncomfortable? Yes. Ruining the look? Probably. But so what?!? There's too many "what ifs" involved. Too many questions, doubts and uncertainties. Too much is at stake if you're not wearing a mask. 

What if that one time I didn't wear my mask it caused a family member sick and pass away? What if that one time I forgot to wash my hands it made some stuff I've touched "infected" by this god forsaken virus? What if that one time I chose to ignore all the necessary precautions it made this virus transmission easier? What if that one time YOU chose to be ignorant?

At the end I guess it's all about choice. If you choose to be reasonable, you follow the extra precautions. Wear a mask and have a new normal life. They might spare you and your loved ones a couple more years to live life as healthy beings. If you choose to be as dumb and ignorant as Donald Trump, who said "It is what it is.", better think it through how your stupidity at the end of the day could effect not only you, but also your loved ones. Salute ;)

*I'm wearing this super cool mask by Wickana Laksmi Dewi. Visit Masker Untuk Indonesia and get one ;) 

Thursday, July 16, 2020

Dear Kukka: Happy 12 & Welcome To SMP Pembangunan Jaya!

Well... I don't care how old you get. You will always be our SiBaiyi. 
Whose cheeks I kiss, sniff and bite every second every day. 
I will always hug you as tight as I can, 
and shower you with kisses no matter how annoyed or angry you get. 
You are a gift from above. Our precious godsend, forever and always. 


Extra special things happened on this year's birthday. You received so many presents! SiBapa gave you that Nintendo thing including the game Animal Crossing which you've always wanted. By the way your reaction was priceless when we gave you the present. It turned out it's because you didn't expect it but you did know what it was. I guess the shape of the box gave it away huh?! :)) 

And then like it couldn't get any better, your uncles joined in and spoiled you to the max by sending you more presents! Uncle Ferry and Uncle Harry gave you Yooka-Laylee and Pokemon Shield to play with your new toy. Like I said "Dimanjaaaaa!" :p 

Anyways SiBapa and SiBubu also want to congratulate you for officially being a junior high student :) Congratulations! I bet it is going to be another adventurous year. Not only for you but also for SiBapa and SiBubu. Considering that you have to do practically everything from home because of this vicious virus... To tell you the truth I'm actually quite sad that you have to start your new phase of life this way. The "New Normal" way they say. Well I don't like it!! :( I like the NOT normal way. Wait. Or is it the old normal way? :)) Why? Well I would love for you to meet your new teachers in person and make new friends face to face. I would love to see you run around and explore your new school with those curious eyes of yours. I would love to hear your stories when you come home from school. Or even kissing the sweaty-smelly Kukka! Unfortunately everything has to be done via screen nowadays. Internet, cellphones, apps and computers etc. But if that's the best way to do than so be it. Better safe than sorry, right?

You being a 7th grader is a very big challenge for me too. SiBapa keeps reminding me for the gazzilionth times to leave you alone. To let you do your things on your own. To give you some space. To give you bigger responsibilities. He told me to stop nagging you to do your homeworks. SiBapa said I should not interfere with your daily school things. If you forget something, if you miss your assignments, if you get bad grades, if you get left behind, it will be on your hands. Not mine or Bapa's. And if that's what you deserve, than so be it. Tough? Yes. Mean? Well... Not really :)) It might feel and looks like it sometimes but... To put things short and simple just remember this: you reap what you sow. That "future consequences are inevitably shaped by present actions" -

Life is an adventure and that is best lived boldy. 
So go have fun with your new teachers and friends, be grateful and polite, stay healthy and always be happy! 
I love you :*

Thursday, July 09, 2020

100 Hari

Seratus hari telah berlalu. 
Namun rasa sedih itu masih saja ada. 
Di kala sendiri atau dalam kebersamaan, 
kehadiranmu, Opa, masih saja selalu terasa.

Kisah tentang kehebatanmu di masa muda, 
dan kearifanmu sampai di ujung usia, 
tetap menjadi bagian di saat kami bertukar cerita.

Kenapa, mungkin Opa bertanya di sudut alam sana. 

Karena kami sangat kehilanganmu, merindukanmu, sangat menyayangimu,


Friday, July 03, 2020

Dear Kukka: Congratulations!


After all those ups and downs, dramas, tears, laughters, frustrations, celebrations, tensions, surprises, adventures and everything in between in Sekolah Cikal Cilandak and Sekolah Alam Tangerang, you, my forever-baby-girl, are now off to the next level of your life: JUNIOR HIGH. 

Good God!!! 😅 I'm still having a tough time to believe it. No. To PRONOUNCE it even!!! To say it outloud whenever later on people ask me what grade you are in now. And I would answer "Oh my daughter in first grade...junior high!" 

Don't get me wrong. I'm obviously very happy and excited about it. But to tell you the truth, I'm also kinda nervous. I mean... Come on... You? In junior high? Considering what an adventurous and headstrong girl you are, I bet junior high will be...a blast? 😬 And as I wrote before on the previous post, your teacher, Bunda Rurie said: "Kukka memiliki keyakinan diri yang kuat dan tidak mudah diatur." 😂 Okay, okay, I'm such a drama queen but so what?!?!?! I AM YOUR MOTHER! It's God-given nature to feel and act this way toward your child. And it's totally normal for you to be annoyed and think "Argh! Okay! So what?!?" 😆 BUT!!! Like I've always said to you... 

One day, when you do have a child on your own, you will finally understand why I can't stop hugging and kissing you, why I get angry whenever you do things just for the sake of doing it when I know that you actually can do so much more, why I can't stop biting those smooth, beautiful yet thankfully still chunky long legs, and most of all why I'm having these mixed feelings about you going to the next level of your life. But for sure, babycakes, wherever you are, I'm very proud of and I'm with you all the way.

Ich liebe dich, Mein Ein und Alles. 😘

Sunday, June 28, 2020

Thank You Sekolah Alam Tangerang

It's official. Our baby girl is an ELEMENTARY SCHOOL GRADUATE. YEAY! :))

Kukka already received her certificate days ago. But this morning the kids, parents and teachers got together via Zoom and had a Lepas Kenang moment. It took quite an effort to get all families together on screen. When the families were ready every student had to say a few words about the time in Sekolah Alam Tangerang. Kukka prepared her speech just the night before. It was 16 sentences long and I must say I'm very proud of her :)

You can tell that Kukka was very serious when she wrote it. The speech was about her feelings as a new student in Sekolah Alam Tangerang, about her struggle, her likes and dislikes, even about the dramas when she had fights and said bad words at school :)) And yes, it was in Bahasa Indonesia and Kukka did it all by herself. Woohoo! That's another part which makes me, and very possibly also her teachers all proud and full of tears :) Afterall they were the ones who patiently taught Kukka from Monday to Friday for 2 years. Bunda Rurie, Kukka's teacher also wrote a description of Kukka which I think is totally spot on :))

"Kukka anak yang suka menggambar. Kukka juga suka designing, animating dan drafting karena Kukka memiliki ide-ide imajinasi yang tinggi. Kukka memiliki keyakinan diri yang kuat dan tidak mudah diatur." -Bunda Rurie-

Well yeah... That's SiBapa's girl alright :)) Especially the "tidak mudah diatur" part. I wonder where she got it from :p Anyways personally it was also a very emotional moment for me. Not only because now I have to accept the fact that my kid is an elementary graduate. Practically a teenager. But also because I have to say goodbye to the mothers who have been so nice to me these past couple of years. The moms who have been very patient, very helpful, always reply my questions day and night, and obviously they are fun to be with. I can't even imagine how to get through Kelas 5 dan Kelas 6 without them. I really hope our friendship will last long :)

Finally I want to say thank you from the bottom of my heart to all the teachers in Sekolah Alam Tangerang. Because of you, Kukka has become a better person and hopefully everything she has learned in Sekolah Alam Tangerang will be a valuable asset for her future. Oh! And also thank you to Pak Amsari the school security man, who always greets me with a friendly hello and a wide smile :) 

And this is a video beautifully done by Bunda Audrey, Elang's mom. Text and narration by me (which SiBapa & Kukka don't believe at all that the voice-over is MY VOICE -_- )