Doc. Rocksy Menjelaskan:

4 hours in the hospital. Not bad. Considering... At 9am I met my beloved doctor. As cheerful as one could be, she greeted me with a loud "Gimana kabarnya?" the second I entered her room 😊 The session started serious after I replied with an answer "Not so good..." 

doc. Rocksy: 

"Infeksi saluran cerna tuh! ... 90% mengandung salmonela tuh! ... Kejangnya seminggu sekali ya? Bentuknya juga ringan-ringan ya? ... Tapi mukanya seger ko! Ngga sampe dehidrasi. ... Hari ini ada waktu buat cek lab ya? ... Masih aktif nih... Ususnya masih bergejolak nih... Ke lab dulu, nanti 1 jam lagi balik lagi ke sini ya! ... Ke lantai 2, turun lift ya terus ke kiri. Langsung ke sini. 1 jam kemudian."

And so I went to the lab. Sadly to say the lab was pretty full. Why sad? Well the fact that the lab was full which means... I don't know... A lot of people are...sick? Anyway... While I was waiting for my turn I had to sit between 2 men who wouldn't stop fidgeting their legs. I felt like there was an earthquake coming. So annoying to see and feel 😑 After taking the blood test it turned out I had to wait for 2 HOURS for the result. I thought about calling Ari so I could sleep in the car while he's driving around the block. But then I thought maybe I should get a decent meal in Mandarin Chicken Rice and just wait there. So I just hung around, read a book, tweeted about this and that... I thought about netflixing but it was too loud and distracting. Most importantly I made sure to take notes about what to tell to my doc. About the phantosmia, about the swaying-flying feeling, the dejavus, the mild seizures, the random memories... Anyway 2 hours-ish passed by. So I went back to see my doc and she read my blood test result on her computer.

doc. Rocksy:

"Garamnya rendah, sama kaliumnya rendah ya! Harus diganti secepatnya. Fungsi livernya aman, elektrolitnya ngga jelek-jelek banget... Keringet dingin itu dari infeksi saluran pencernaan tuh... Bukan ke arah tifes, apa salmonela, segala macem gitu, bukan. Makan yang bener dan ganti cairannya. ... 2-3 hari ini makan yang lembut aja. Jangan yang keras-keras kaya daging dulu sama yang pedes-pedes. Biar istirahat dulu ususnya. Tadi saya denger kan masih ocok-ocok-ocok. Masih begitu gitu kan?! ... 

Kalo memorinya gimana? Udah lebih enak belum? ... Ngga ya? 😅 Di satu sisi kita memang udah mulai aging kan... Jadi ngga pake sakit juga emang udah mulai lupa-lupa sih biasanya... Di atas 40 kan... 😄 ... Apalagi yang dirasa tambah parah? ... Lagi...banyak pikiran? Hmmm... Kaya tadi ke lab ngga nyasar? Ke kamar mayat... Atau ke lantai 10 ya 😁 Padahal kemana-mana ya! Sukses balik lagi ke sini. ... 

Sebetulnya kan memang kalo kasusnya Farika kan harusnya sih teorinya dia stop ya... Ngga tambah parah. Harusnya malah membaik. Gitu kan... Tapi kadang-kadang memang ada sisa. Nah sisanya ini kadang-kadang bisa balik, kadang-kadang ngga bisa balik. Tapi tetep selama kita masih hidup kan sel-sel di otak itu tumbuh. Apalagi semakin dilatih, semakin tumbuh. Harusnya memang kalo banyak dilatih, banyak dipake, fungsinya akan baik. Ngga usah khawatir. Kalo pun lupa pokonya latih aja terus! Nanti suatu waktu pasti bisa! Tuh kaya sekarang kan ngga nyasar lagi 😄

Untuk kejangnya... Jujur saya kalo ensefalitis itu memang ngga bisa ditebak. ... Ngga ada pola sama sekali ya? Kalo ada polanya enak bisa dicegah ya, kita bisa waspada. ... Gampang kebangun? Dari segi stress ngga? Kan kalo pandemi gini kan bikin kita jadi ngga mobilisasi. Terus ngga ketemu orang. Nah itu kadang ada stress-stress di bawah sadar tuh... (Soal orangtua) Lebih sedih kalo ngga dateng, betul... Kalo seneng malah imun ya malah bagus imunnya 😁 ... Yang pasti tidurnya ngga bagus ya... Tegretol bikin ngantuk ngga? Beberapa pasien soalnya bilang gitu... Keppra juga ngga punya efek ya? Cuaca panas atau dingin, ngga mempengaruhi juga? ... Nanti coba lebih dilihat lagi catatannya ya? Kira-kira apa yang bisa dilihat. Tapi kalo ngga tau juga ya udah ngga usah dipikirin lah 😄 Daripada kita malah jadi bingung sendiri ya! ... Ada tuh pasien saya ensefalitis umur 3 tahun sekarang udah 5 tahun. Masih kejang sebulan sekali 2x. ... Tapi sekarang dia bilang ngga tau deh dok kenapa dok! 😁 Tapi dia kejangnya ngga lama, nengok ke kiri sedetik selesai. ... 

Ngga sampe sakit banget kepalanya? ... Oh? Minum obat? ... Riklona boleh dipake kalo ngga bisa tidur. Kalo pas lagi jelek banget tidurnya. Kalo cuma semalem ngga bisa tidur ngga usah diminum. Tapi kalo udah 2 malem nih ngga bisa tidur minum aja. 1/2 tablet. ... Sip! Kalo aman-aman kita ketemu April? Bisa? Foto? Boleh 😁" 

Doc. Rocksy Menjelaskan:

I was too excited when I met my beloved doc this month... It made me forget to record most of our conversation 😔 Thankfully I did notice that I forgot to push the record button when I was going to show her my seizures videos. But then I forgot to push the record button AGAIN after I showed her my blood test result 😅

Anyways some of our convo went like this:

dr. Rocksy: 

"...kemampuan mengira kiri-kanan, mengira 100-200m itu adalah fungsi salah satu otak sisi kanan. Namanya lobus parietal. Tapi kalau betul-betul "Kok kaya bener-bener nggak pernah liat nih!", nah itu baru di memori... Jadi agak berbeda tempatnya di otak kita."

My reaction: Berarti hampir 100% memorinya yang bermasalah ya dok? 😂

dr. Rocksy:

" 😄 Sebetulnya dari awal memang kenanya di temporal. Temporal tuh memorinya."

I also told The Rocksy about me keep forgetting people's names and faces. As example I told her about SiBapa's team members who often work at our home. Same people but still feel like strangers to me 😅

"Wajahnya inget? Bukan cuma nama tapi juga kadang-kadang ngerasa asing?"

About déjà vus:

"Nah itu ibu konsentrasinya ya... Jadi waktu itu kepikir untuk ngelakuin ini atau ngomong ini. Tapi belum sempet dilakuin udah distraksi. Jadi kadang-kadang waktu kita distraksi itu kita pikir kita sudah ngelakuin padahal belum. Nah kalau untuk yang ini kita latihannya musti lebih PELAN. Ngga boleh banyak kegiatan dalam satu waktu. Satu-satu."

The session was interesting as usual and probably also too...exciting? I forgot to take our 3-mos picture 😞 The Rocksy was very happy when I told her that I'm starting to play/learn piano again. I told her that since this rainy season began and I couldn't go outside to take my 1-hour walk around the block I started to learn a song. It's hard because of... Well... It's been a long time. I forgot most of the notes. My fingers were stiff. I couldn't concentrate. Many times my brain and fingers didn't cooperate. But I guess practice makes perfect. I almost get into the last part of the song so... Wish me luck 😊 

My blood test result is also good. 1 point was red but nothing to be worried about. I forgot what it was but I guess it's pretty much nothing. COVID-19 didn't get into the conversation at all. I take it as a good sign 😊 As for the seizures... Well... 2x/day minimum... But sometimes also none at all. Totally random. Not the foamy mouth -creepy eyes ones. Just... You know... Small seizures. Lots but... Small. We agreed that exhaustion and stress/overthinking/worry are still the main triggers... 

The rest of the conversation was too personal. Like always 😄 But this time I didn't cry! I think... 🤪 My beloved doc was happy to hear when I told her about me playing piano again. Which makes me even happier and excited to keep on practicing 😉 That's what she does to me... Dr. Rocksy. The way she says things to me about what to do and what not to do is... Soothing. She doesn't FORBID or SCARE me. Dr. Rocksy gives suggestions and she encourages me. If something goes wrong, she doesn't even say that it's my fault even if it is, or makes me feel like it is my fault. My doctor never says something like "Ibu gitu sih jadinya gini." or "Harusnya" or "Makanya".

At the end of this month's session I do remember some activities which I should keep on doing: write more, play piano, walk around the block, be with others who make me happy, make more conversations, read, draw, and... Oh! I also told dr. Rocksy that currently I'm sorta addicted to Homescapes 🤣 But I defended myself by showing her how the game goes on my iPad 😆 That it needs logical thinking, quick reaction, memory, ea. Lucky me her nurse who stood next to us nodded her head quickly and said "Oh iya tau Homescapes!" 😂 So I guess I was...safe. But then dr. Rocksy reminded me NOT to play TOO LONG. Aaaaawkaaaaaay..... 😞😅 I guess she's happier with my piano playing then gaming 🤪 Anyway... It's safe to say that my November session was alles gut. Until next time doc... Love you! 😙 

Doc. Rocksy Menjelaskan:

"Baru masuk udah ada yang salah!"

Yeah 😅 That's what happened. The doc found out that all this time I've been writing in the wrong book 😂

Dr. Rocksy : "Udah 3 taun aja nih buku ya!" 

About seizures.

Dr. Rocksy : "Setiap Rabu... Ada apakah dengan Rabu? ..." 

About difficulty finding and using the right words, oral and written. 

Dr. Rocksy : "Mungkin ngga ada hubungannya dengan pandemi kita jarang ngobrol? Apa jarang ketemu? Kan agak beda ya ngobrol di ngetik, WA atau..."

"... Tapi kan beda Bu... Kalau sama mba bahasanya yang sederhana. Nggak yang susah-susah. ... Kalau di WA kan kita ada kesempatan untuk mikir, ngetik, beda. Yang susah waktu nulis dan waktu ngomong?" 

About the future.

Dr. Rocksy : "... Sebetulnya ini memang misteri dari otak kita ya... Memang otak kita tuh ajaib banget. Kalau kita sensitif kita jadi seperti bisa memprediksi nih... At least itu bukan sesuatu yang jelek sih... 

... Tidur bisa dibilang baik ya? 

... Nyalain kompor lupa, misal karena apa? Distraction karena handphone misalnya? ... Oh... Sebetulnya memang lagi fokus masak ya??? ... Makanan di microwave sampai udah dingin lagi? Tapi minimal ngga bahaya lah ya! 😄

... Oh yang sering nyasarnya masih? Nyasar di komplek, di supermarket, masih? Kayanya hari ini kita ngga ada pe er. Karena kan kita Mei udah check lab kan... Jadi kalau mau check lab lagi Agustus akhir atau September awal. Terakhir hasil check lab ibu aman sih... Jadi saya pikir 6 bulan lagi aman. Ginjal bagus. Gula bagus. Darah rutinnya bagus. Iya, waktu itu livernya naik tapi itu karena ibu minum obat epilepsi. Tapi naiknya minimal banget kok! ... Telinga masih berdengung? ... Jantungnya bagus. ... Saya mau bilang ibu dingin! Tensi ibu bagus tapi ko ibu dingin... Abis kena AC kali... Perut aman. 

... Coba nanti kalo bisa browsing virgin coconut oil, VCO. Bagus untuk memori. 1 sendok makan aja sehari. Jauh lebih bagus dari pada olive oil sekarang. Karena asam lemaknya tuh baik banget nutrisi buat otak. Yang lain-lain kaya DHA, omega 3, mau ngga? Omega 3 bagus juga untuk nurunin kolesterol." 

About prescription.

Dr. Rocksy : "Ini resepnya bisa diulang 2x. Ketemu lagi November awal." 

About the diary. 

Dr. Rocksy : "Yang belakang yang kita pakai ya..."

About Covid vaccination.

Dr. Rocksy : "Vaksin boleh. Kalau kaya Sinovac itu kan relatif sangat sangat aman sebetulnya. Tapi tetep tensi ngga boleh di atas sekian, terus ngga boleh ada orang alergi. Nah alergi ini yang kita ngga bisa tebak... Karena kadang-kadang dulu alergi sekarang ngga. Eeh sekarang ngga alergi besok bisa alergi. ... Yang bener itu sehari sebelum vaksin istirahat bener-bener. Ngga boleh minum kopi, tidur cukup, ... 2 hari setelah vaksin pun masih harus ngga cape-cape dulu. Nah kalo bedanya nih Sinovac, Astra Zeneca, sama nanti Pfizer, atau Moderna. Kalau Sinovac kan dia virusnya sudah mati. Seluruh virus yang sudah mati dimasukkan ke tubuh. Jadi sebetulnya aman banget. Karena tubuh pun udah ngenalinnya udah biasa. Kita vaksin-vaksin kita yang dulu? Yang waktu kita kecil tuh semua rata-rata virus yang dimatikan. Kalau Astra agak beda nih... Dia virusnya ada 1 komponen aja yang diambil. Jadi kadang-kadang tubuh ngelawannya lebih hebat. Karena nggak kenal. Makanya buat anak muda efek sampingnya lebih banyak. Karena anak muda kan ngelawannya lebih hebat... Demam pasti. Kalau yang Pfizer ini lebih spesifik lagi. Hanya RNA-nya aja yang diambil. 1 protein aja yang diambil. Proteinnya si virus. Kalau tadi kan si Sinovac seluruh virusnya dimasukin. Tapi yang udah mati virusnya. Kalau si Astra Zeneca ada virusnya dimodifikasi, kalau si Pfizer dia cuma ambil RNA-nya aja. Bungkus dari inti virusnya. Nah ini relatif sebenernya aman-aman aja tapi efek demamnya ada. Terutama anak muda. Anak muda kan imunnya lebih bagus. Tapi cuma 2 hari ilang kok... Jadi yang paling penting adalah tadi itu! Tidak cape-cape. Karena kadang-kadang pas udah demam tetap aktivitas malah lebih fatal. ... Kalau mau nunggu Pfizer ya ngga apa-apa. Anak ibu juga udah bisa! 

Semua vaksin itu memang tidak bikin kita kebal. Tapi kaya Sinovac 60% lah kita ngga kena. Kalau kaya Pfizer malah 90%. Jadi lebih kuat. Tapi kalaupun kita kena masuk yang 10% kenanya itu, itu kita 97% ngga akan masuk ICU. Iya sebagus itu! 99% ngga akan mati. Jadi kalau untuk kematian dia sampai sekuat itu. Begitu udah divaksin hampir pasti nggak akan mati deh! Gitu intinya. Tapi kalau ngga vaksin, badan kita ngga tau responnya. Bisa jadi tambah malah kemana-mana... Jadinya angkanya sih 99% yang meninggal itu tidak divaksin."

About next session.

Dr. Rocksy : "Ini kontrol ulang, check lab November 2021, tidak perlu puasa. Biasa aja. Ngopi nggak masalah. Saya masih kasih vitamin untuk lever dan omega 3. Tegretol masih 3x ya? Ibu nggak kesulitan minum 3x sehari ya? Nanti kalau kejangnya makin kurang making kurang nanti di November kita kurangin lagi lah 2x lah... 

About memory and concentration getting worse.

Dr. Rocksy : "Lagi ada banyak itu ngga...? Banyak pikiran ngga sekarang? ..."

About Covid vaccination again.

Dr. Rocksy : "Sekarang sih gini... Vaksin terbaik adalah vaksin yang tercepat kamu dapat 😃 Ada kampanye begitu. The best vaccine is the earliest you get. 😄 Kalau ada komorbid, ada penyakit-penyakit lain, jadi si Covid ini kaya ngebangunin penyakit kita. Misalnya kita punya diabet, terus selama ini bagus, terkontrol. Begitu kena Covid tiba-tiba gulanya jadi kacau. Sama tensi juga begitu. Ada pasien saya udah 10 tahun lupus, ngga apa-apa. Sampai dia udah ngga minum obat. Lupusnya aman banget. Eh kena Covid! Langsung tuh lupusnya jadi gila-gilaan! ... 

About Corona virus. 

Dr. Rocksy : "Jadi dia tuh kaya ngebangunin semua penyakit kita yang tadinya udah terkontrol. Nah di situ dia jahatnya... Kalau terlambat akhirnya meninggalnya cepet banget. ... Langsung putih semua paru-parunya, udah berhenti nafasnya. ... Hari ini dateng masih sesak tapi waktu difoto udah putih semua. Besoknya udah ngga ada. Jam... Mainnya jam, udah bukan hari lagi. ... Begitu parunya udah putih, kejar-kejarannya udah jam. Hidup mati memang. Kalau yang divaksin biar pun parunya udah putih, masuk ICU, masuk mesin, seminggu keluar. Bisa! Bahkan umur 90 sekalipun! Ada pasien saya umur 92 tapi sudah divaksin, masuk ICU 8 hari keluar, pulang lho! bagus lho! Saya sampe... Segitu hebatnya nih vaksin??? Abis itu kita kampanyenya gila. Ayo vaksin, vaksin, vaksin! Semuanya kita suruh vaksin! Cuma vaksinnya nih harus bener ya... Dalam arti bener tuh gini... Pas kita ke tempat vaksin, jangan ngerubung sama orang lain. Berarti kita ketularan di tempat vaksin. Jadi pilih tempat vaksin yang pake jam, yang jaraknya bagus. Terus bener-bener abis vaksin kita istirahat dulu..."

Unwritten conversation: TOP SECRET 😜 

See you in November doc 😉

Distance apart, Whatsapp close to heart 

Doc. Rocksy Menjelaskan:

Again. I forgot to record the first 14 minutes 😓 

Dr. Rocksy: "...Nerima? Saya senang banget sih statement itu. Kalau ngga kita yang nerima diri kita terus siapa lagi, gitu kan?! Jangan terlalu keras juga sama diri sendiri. Gitu kan ya!?! Nah itu satu... Nah depresi ini memang mesti di-support sih... Kadang-kadang apa yang terjadi di lingkungan memang bikin ya tadi... Tambah drop mood-nya. Nah yang kedua gangguan tidur justru. Karena tidur itu kan seperti pada komputer... Restart. Gitu yaa... Jadi memori disimpan jika tidurnya baik, memorinya akan lebih dalem. Tapi kalau tidurnya terganggu, ya kaya nguap lagi. Nah kita mesti koreksi deh soal pola tidur ya..." 

Talked about sleeping pills and other stuff. 

Dr. Rocksy: "...soal depresi, soal insomnianya, itu bisa bikin penurunan. Nah ini penurunannya kalau saya lihat di beberapa poin khusus. Di kesulitan menemukan kata, tapi waktu baca ngga susah. Jadi bukan total fungsi-fungsinya terganggu. Gitu.. Dan beberapa fungsi kreatif masih bagus. Kaya gambar sama nulis masih bisa. 

Memori jangka pendek memang yah... Dari dulu itu salah satu yang paling sulit untuk kita perbaiki. Tapi kondisi brain fog-nya itu yang kayanya bikin orang-orang sekitar jadi ngerasa tidak ada di sini sepertinya kan ya? Bu Farika nih lagi ada di mana sih? Ada di sini tapi ngga ada di sini. Gitu kan ya? Kita kasih nutrisi untuk otaknya ya... Kemarin kan udah kita coba Folavit sama Tebokan tapi kayanya kurang efektif ya... Kita switch ya... Saya mau gantinya pake Brainact dulu. Kita masih ada beberapa suplemen. Nutrisi buat otaknya. 

Tapi yang pasti kejangnya udah ngga. ... Jadi si obat kejang masih kita lanjut ya... Keppra sama Tegretol. Tegretol bisa kita turunin nih! 2x aja sehari. Bagus nih sistemnya 😆 #commenting about my pills & stickers 

Boleh kita turunkan ya? ... Pernah kita turunkan tapi jadi sering? Oh iya ya... Jangan deh... Terakhir September sama Oktober masih sering banget. Nanti deh kita tunggu sampai November ya... .... Yang sampai giginya patah Juli kayanya ya... Yang abis meninggal orang tuanya... Mertua bulan Mei eh April meninggal kan? Abis itu emang agak nge-drop sampai Agustus. Mulai November sih ini bagusnya. Mulai November udah di bawah 10x... Udah mulai jarang ya... Berarti nanti deh kita tunggu sampai November. Obatnya biar ini dulu. Abis ini check lab dulu nanti balik lagi ya!"

Me explaining how to get the lab wrongly. Again and again. 😅

Dr. Rocksy: "Ke lab lantai 2... Lantai 2! 😄 Jadi turun lift ke kiri terus ke kiri lagi!" 

An hour later after blood test and quick lunch.

Dr. Rocksy: "Kita sekarang ngebiasain ngga makan siang di rumah sakit. Pokoknya ngga buka masker aja di rumah sakit. Dokternya pada takut 😄 Kalaupun makan di rumah sakit tuh yang di sudut-sudut dulu. ... HBnya bagus ya... Livernya juga oke kok ini! ... Sedikit naik tapi SGPT SGOT masih normal. Fungsi livernya, enzim livernya. Fungsi ginjalnya juga bagus. Gulanya juga bagus. Ok! Cakep! ... Jadi obatnya masih sama, Keppra sama Tegretol. Tambahan untuk vitamin otaknya Brainact. Sama untuk vitamin livernya saya kasih HP Pro. Ngga jadi dikurangin obatnya. Nanti dulu deh... Kita lihat bulan November. Karena hasil livernya juga ngga jelek kok... Jadi saya berani pake dosis tinggi. Caldece terusin selama COVID aja. Kalo udah nggak sih nggak usah. Kalo udah kehabisan pake CDR boleh. ... Antara Agustus akhir atau September awal ketemu lagi. Kalo ada sesuatu mau datang secepatnya boleh. Kalo ngga, WA dulu. Ih! Ngga apa-apa! 😁 "

So all in all yesterday's session was okay. A couple of tears, lots of laughters and heart-to-heart talk. From 10am until 1:15pm. Not bad. But like always. I still got lost. Not to the Morgue but I forgot which floor I was and where I supposed to go. I was also confused how to get to the cashier. Okay... I'm gonna tell The Rocksy about that next time. 😅

Pictures taken, mask off and hugging with permission. 

😉

World Encephalitis Day 2021!

 

Today is World Encephalitis Day! 

Please wear something red on February 22nd 

to raise awareness for this deadly thief of disease. 

Check out the brilliant The Encephalitis Society for info and ways to help.

Thank you!

Doc. Rocksy Menjelaskan:

"Ensephalitis tuh kalau pada perempuan angka kejadiannya sering bareng sama yang namanya teratoma. Teratoma itu tumor jinak yang bawaan lahir sebetulnya. Biasanya di daerah rahim. Jadi kita mesti cari setiap perempuan kena ensephalitis NMDA mesti cari ada teratoma atau ngga. Waktu itu saya periksa tuh CT Scan-nya! Memang ngga ada teratoma. Tapi SEINGAT saya nih ya kayanya ada sesuatu. Makanya saya pengen evaluasi ulang. 

Tapi yang sekarang bagus nih! Cakep! Cuma ada kista kecil sih di livernya. #censored Ngga apa-apa! Itu mah biasa! Ngga bahaya sama sekali. #censored Ini foto perut dibelah tengah nih ya! #censored Ini paru-paru. Ini lambung. #censored Ini kistanya, diukur ngga nyampe 0,5. Kista itu kantong isi air. Ini rahimnya aman. Justru bersih banget! Yang lain-lain oke lho! Oke banget semuanya. Ini kandung kencingnya bagus. Ginjalnya juga bagus. Udah! Cakep semua. Kista tadi abaikan saja. Sama sekali ngga bahaya. Ngga ada batu.

Ayo kita lihat buku diary ya! Makin jarang nih syukur ya! #censored Yang sampai bener-bener pingsan ngga ada ya... Lebih banyak gemeter, gigi gemeletuk. Oh tapi ini ada nih yang sampai ngga ingat apa-apa! Kejang sampai kaku kegigit bibir gitu ngga ada ya! Telinga berdengung? Coba ke THT ya! (Udah pernah, aman) Pendengaran sampai terganggu? Kalau orang ngomong harus benar-benar keras? Harus diulang?? Oh iya ini kejangnya hampir setiap Senin nih! Kenapa? Habis weekend... Ini namanya I don't like Monday bener-bener nih! #LOL 

Secara umum dari segi serangannya kita bersyukur ya jauh membaik ya... Cuma... memori nih yaaa... Belum pulih lagi ya... Malah tambah turun ya... Rasanya apa? Bener-bener susah untuk disimpen atau lebih kaya ngga fokus? Memang ilang ya... Biarpun sudah fokus agak sulit untuk disimpen gitu ya? Deja vus. Susah tidur makin sering ya.. Sampai mimpi buruk ngga ya? Pas bangun rasanya sedih atau mood-nya jadi low banget... Overall, di luar mimpi, perasaan sendirinya gimana? #censored

Saya kasih suplemen tambahan ya... Asam folat aja sih... Mudah-mudahan bisa bantu retain memorinya. Ibu kan sebenernya termasuk rajin tuh! Diary selalu diisi, recording. Salah satu melatih memori memang adalah pertama memperbaiki fokus atau atensi, tidak melakukan beberapa hal dalam satu waktu. Lakukan 1 hal pada 1 waktu. #censored Kedua bikin lebih slow, lebih lambat. Karena once kita in a rush, lagi buru-buru biasanya memorinya juga jadi lebih gampang menguap. Makanya sebetulnya orang-orang yang suka multitasking terus terburu-buru itu akhirnya ngga pernah bener-bener kesimpen memorinya. Nah ini karena ada underlying-nya ya... Sebelumnya pernah kena ensephalitis jadi seperti kita belajar baru lagi ya.. Cuma ini kok ngga lulus-lulus gitu ya! Ke Siloam aja masih nyasar terus! Waduh! #LOL 

Kalau angka gimana? Hmm... (berhitung) Makin parah ya? Ngafalin nomor telefon atau nomor rumah, susah banget ya... #censored 

Pada akhirnya banyak enjoy lah! Menikmati. Ngga apa-apa sih! Lupa itu banyak untungnya kok! Jadi ngga dendam, jadi ngga marah, jadi ngga stress gitu ya! (dulu tukang dendam) Langsung dikasih jadi lupa ya! #LOL 

Sakit kepala masih? Keleyengan ya... Yang sampai jatuh kaya naik kapal ngga ya?

Itu hal yang bagus ya belajar pakai kamus! Itu sekarang lagi direkomendasiin baca kamus. Saya juga baru baca beberapa penelitian tentang itu. Kita itu kan katakanlah tahu 100 ribu kosa kata tapi jarang kita pakai. Paling yang kita pakai 1000. Jadi dengan membaca kamus kita nemuin lagi kata-kata tuh kaya manggil lagi memori-memori yang jaman... Iya, ngga seru banget baca kamus. #LOL Tapi ya banyak merangsang otak. 

Kayanya obat sekarang dosisnya cocok ya! Tes memori lagi abis lebaran aja yah! Mei. 

Lupa tahun ngga boleh lho...! Kalo udah tahun tuh... Lupa tahun kayanya bukan karena lupa tapi lebih karena angka. Angka jadi kaya ngga interest. Jadi makin gampang banget ngelupain angka karena numbers tuh bukan sesuatu yang bermakna. Tapi tetep lho! Kalau perlu nyobek kalender ya itu kebiasaan baik! Nyilangin tanggal ngga apa-apa, susah jaman sekarang nyari kalender sobek. Dengan mengisi diary kan juga ada tanggal. 

Puasa ngga masalah kaya tahun lalu. (Tau diri aja) #censored Oh itu pas yang mertua meninggal... Jadi mertua meninggal tuh Maret... Abis itu kacau deh sering kejang. Pernah vertigo juga. 

Tebokan. Buat telinga yang berdenging. (Kena ensephalitis jadi tuli) Ada tapi jarang sih... Mungkin karena efek samping obat. 

Saya masih ada beberapa yang pengen di-check up aja. Kaya kolesterol, kekentalan darah, nanti aja habis lebaran. Itu rutin sih kalau bisa setahun sekali. Kadang-kadang kalau kekentalan darah tinggi, kolesterol tinggi, mengganggu pendengeran juga. Karena aliran darahnya jadi kurang bagus. 

(SUDEP) Yang paling khas kejang itu kalau kegigit. Jadi kalau pagi lho kok ada darah? Nah itu pasti kejang! Tanda khas abis kejang tuh 1. Kegigit. 2. Ada biru-biru. 3. Atau ngompol. Emang kalau bisa jangan tidur sendiri. Kalaupun sendiri, ada orang deket, samping kamar, jadi kalau ada apa-apa bisa kedengeran. Atau ya CCTV. Gara-gara Bu Farika semua pasien saya suruh pasang CCTV lho! 

Obat lanjut ya! Cuma tambah vitamin Folavit dan Ginko ya... Buat telinga ya! Ketemu lagi Mei akhir ya! 

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! :)

SUDEP

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. So now 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 :*

The New Normal

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: A 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 ;) 

Doc. Rocksy Menjelaskan:

"..... Semua dicatat. Misal hanya kedip-kedip, hanya gerakan mulut, sempat sampai tidak sadar, sampai terjatuh, kepala kebentur, sampai ngompol. ... Pencetus bisa misal abis marahan, abis makan es krim, ... Rame banget? Oksigen cukup? Karena berisik suara? ...

... Kejang sangat dipicu oleh psikologis. Waktu kita lagi marah, lagi sedih, lagi gelisah, lagi khawatir, bisa muncul. Itu kan areanya di otak deketan. Di EEG jelas nih! Kenanya di temporal nih ya! Temporal tuh ada memori, di situ juga ada bahasa, kemudian deket lagi di situ ada perilaku. Termasuk marah atau sedih atau apa, itu ada di situ. Di Limbic system-nya. 

... Kapan-kapan ajak sahabatnya dong ke sini! Untuk kasus seperti ibu saya memang harus lihat dari kacamata orang lain, bukan cuma kacamata pasien. Jadi apakah ini suatu hal yang justru menunjukkan perbaikan jadi ibu sudah lebih alert, jadi lebih sensitif, jadi lebih bisa membaca suasana, udah ngga terlalu pelupa. Kalau dulu kan yang betul-betul mungkin ngga enak tapi besok-besok lupa ngga enaknya kenapa! Kalau sekarang ngga enak, tetep ngga inget tapi ngerasa tetep ngga enak nih! Atau kedua ini malah tanda ngga bagus nih! Mulai muncul kaya halusinasi. Misal jadi banget curiga. Ini yang kita perlu kacamata orang lain. Mungkin memorinya sudah bisa memilah mana yang benar-benar harus diingat, mana informasi yang ngga penting. 

... Sebagian besar kasus NMDAR Encephalitis Autoimmune ini memang ada underline psikologis. Teratasi justru karena lupanya. Kalau sudah mulai inget-inget lagi, suka meneliti sendiri, mikir sendiri, bikin asumsi sendiri, bisa malah bikin tambah sakit. Campur tangan keluarga harus masuk.  

... Emosi, memori, kejadian berat bisa menjadi underlying-nya. Buat apa mengungkit sesuatu yang bikin luka... Ada pasien saya 14 tahun, kakanya baru meninggal, dia merasa bersalah banget sampai bilang kenapa ngga saya aja yang meninggal, kenapa mesti koko. Jadi bener-bener kejang dan lupa-lupa. Persis kaya ibu. Ngga inget apa-apa. Mereka cari konseling ke pendeta juga. Konseling ke psikolog boleh juga.

... Obat-obat epilepsi biasanya sih tidak merusak sistem pendengaran karena memang untuk pengobatan jangka panjang. 

... Anaknya pinter banget ko! Justru itu bisa mengasah sensitifitasnya. Social skill-nya lebih baik, lebih bisa punya empati. 

... Kiri kenanya. Bahasa. Jadi susah untuk mengungkap kata. Di temporal.

... Coba pakai ini deh! Virgin coconut oil paling baik buat otak. Penelitian terbaru, besar, tahun ini keluar: extra virgin coconut oil ngalahin olive oil. 1 sendok sehari."

Yesterday's check up with dr. Rocksy was...fun! :)) We had a conversation like almost for an hour! I poured my heart out to her, asked her questions which had been bothering my mind and my curiosity for these last 3 months... We basically talked like 2 BFFS. From meals I can cook to important stuff that are secretive to share to anybody but her. All that's missing was cups of coffees and a plate of calamari :)) All in all, waiting for hours in the hospital was totally worthy! dr. Rocksy über alles! :)

Doc. Rocksy Menjelaskan:

"..... Wah banyak sekali (kejangnya)! Masih 6 minggu yang lalu kita ketemu... Gula darahnya bagus. Tekanan darah normal. Saya kasih Riklona 1/2 selama 30 hari ya untuk bantu tidur.. #etc

............................................................. 

...... Saya pengen ibu ketemu sama pasien saya yang depresi, ngga mau ketemu siapa-siapa, ngga mau makan, ngga bisa tidur, benar-benar depresi. ......... #etc"

Shit. I accidentaly stopped the recording because I wanted to show her the videos while I was having the seizures. The recording stopped just like that. God damn it. I really have to remember that this might happen. Or even better, iPhone SHOULD START MAKING IT HAPPEN! But I told her my... Theories? About why these seizures happened at these times.

Other than that, today's session didn't take very long. No EEG or any other tests than checking up my blood sugar level. I told dr. Rocksy about Eza wanted to take Daddy to see her. She said anytime. Daddy will be prioritize because that's what the hospital does for elderly - emergency patients. So it means that Daddy doesn't have to wait too long for her. I also got the authorized letter to bring medicines to another country. dr. Rocky told me to have fun. She always does. And this time I really want to bring something back for her. Something pretty :)

Another nice thing I encountered today was when the nurse asked my birth of date and stuff, she said that I looked too young to be 43. I thought you're in your early or tops mid 30s, seriously, not kidding. That's what the nurse told me. I laughed hard, showed her my grey strands and said thank you. On my way home I successfully took a nap in the car. After lunch I spent about 2.5 hours nap in the bedroom.

So in overall, today has been going well. Alhamdulillah.

Another Session, Another Enlightenment

Yesterday was another session with dr. Rocksy. It was earlier than it should be because I had a series of seizures the day before. Good thing I remembered  when the last time we met, dr. Rocksy told me to go to her before 24 hours passed by so she could take some tests. So there I was, in Siloam Hospital again. I was ready to spend the whole day in the hospital. But it turned out I only had to have an EEG (Electroencephalography). It lasted 30 minutes. I remembered I was quite bored. Then all of a sudden the nurse said gently "Sudah, Bu...". I was like "Huh???" I fell asleep!!! :))) 

Minutes later I met dr. Rocksy again. She held my test result in her hand. I was ready to hear some good news. Was it good??? Weeeeeell :)) It was good because dr. Rocksy finally found where the real problem has been "hiding" all this time.  How could she find it??? Because when I went through the EEG, I had seizures :I Again I was like "HUH??? REALLY???" I thought I fell asleep and even snored! Like always, the way dr. Rocksy explained stuff was very clear, detailed, soothing and somewhat funny. No wonder she's one of the best :) In the middle of the session I even had the time to tell her that I met an old lady in the waiting room, asking me what was wrong with me. I told the old lady about my condition. She told me to get a ruqyah or exorcism. :))) Then dr. Rocksy started to explain everything. And this time thankfully I remembered to record it!!! :)))

Dr. Rocksy and I had a good laugh when she told me to...chill? I poured my heart out on this part. She listened to me attentively. This is why I rather go by myself whenever I see her. I can tell her about whatever I want and I don't get any whys-donts-dos-thisisbecauseyous-etc. What is said in her room, stays in her room. Too bad I can only "hangout" with dr. Rocksy in the hospital room. I bet she's an interesting person to spend time with and to blog about :p

Doc Rocksy Menjelaskan:

..........

Akhirnya saya puas banget nih! Ketemu gelombang kejangnya. Bahkan saat dites Ibu lagi kejang. Ini KLASIK sekali! Ini namanya Gelombang Epilepsi. Ada gelombang tajam, diikuti oleh gelombang lambat. Namanya Kompleks Paku Ombak. Spike and Wave. Adanya dominan di daerah otak sebelah kiri. Yang bekas dulu itu. Dulu pernah radang encephalitis kan? Sisanya jadi Jaringan Parut. Parutnya itu yang jadi sumber listrik berlebihnya. Disebut berat kalau gelombangnya ini menyebar ke seluruh otak. Itu yang baru jadi #teethclattering. Konsisten hanya di otak kiri. Yang di otak lain bersih. Tapi kalau dia makin lama, kalau dia memanjang, bisa menyebar ke semua. Tapi saya udah makin tenang... Bukan makin tenang :)) Tapi jadi nggak usah nyari kemana-mana. 

Ini bukan dibuat-buat. Ini takutnya kalau ada yang masih nanya ya... Bukan juga psikis. Meskipun pemicunya bisa karena stress. Dosis obat sedikit dinaikkan. Tapi memang di samping kenaikan dosis, betul, faktor-faktor pemicu mesti dikontrol. Emosi. Cemas. Khawatir. Takut. Marah. Sedih. Senang. Mesti kayanya lempeeeng aja gitu! Ngga beremosi. Makanan jangan sampai terlalu lapar deh... Gula turun, laper, makanan buat otak berkurang. Bisa jadi pemicu. Nanti bulan puasa, latihan dulu beberapa hari supaya terbiasa.

Selain makanan, cape, emosi, sinar terlalu terang juga kadang-kadang bisa memicu. Tapi biasanya kalau yang temporal lobe ini karena emosi atau stress sih... Bener kata si kecil ya :)) Olahraga paling bener, paling rileks pilates. Jalan sore bagus banget sebetulnya. Jam 4an aja. Jangan menjelang maghrib. Secara medisnya, dari terang ke gelap, tubuh kita mengeluarkan hormon sebagai persiapan untuk tidur. Tapi kadang-kadang hormon tidurnya itu bikin ada nggak seimbang yang lain-lainnya juga. Yang kedua, dari terang ke gelap, mata kita juga adaptasi. Jadi kadang-kadang karena masalah ada perubahan aja sih... Karena ini lebih sensitive aja...

.......... (Actual conversation shortened and edited)

2019

Well what do you know... Another year has passed & 2019... It's here. Man... Time flies. It's been too long since my last writing too... I don't know why but I just didn't have the urge to blog. Not that there's nothing to write about. There is. A lot. For example, let's start with the most important one: my last visit to dr. Rocksy. Usually I dedicate a whole blogpost just for this particular "topic" but for now, let's just... Share. Shall we?

1. Doc Rocksy Menjelaskan:

It was a month earlier check-up than it supposed to... But I had to get a formal letter from my dear doctor which stated that I am suffering from this & that & have to bring certain medications. What for? Because we went to spend holiday in Kuala Lumpur. I forgot to record my conversation with dr. Rocksy but one thing I do remember: WHEN I GET SEIZURE, IMMEDIATELY GO TO THE DOC: I will have to get EEG (Electroencephalogram). I also remember that she was not very happy about the light seizures I got. Especially when I showed dr. Rocksy the video taken by my BFF...

2. Destination: Kuala Lumpur

Doing random stuff or going to random places is nothing unusual for us. So when SiBapa said how about if we spend 4 days 3 nights in Kuala Lumpur? I was like... Okay. When? December 27th - January 1st. So yes... We spent the New Year's Eve in KL. Lucky us there was still a room available in The Renaissance Hotel. Why lucky? Because it was high season! And we booked it literally in the last minute! Well... Not exactly minute like... Minute. But you get what I mean, right?! Days before we flew to KL I googled the places we wanted to visit & made a schedule. But as predicted, it was pretty much useless :)) We rented a car, went shopping, took pictures in front of Petronas Twin Towers, visited Colmar Tropicale French Town & my loved ones had fun in Adventure Park & Paintball Warfare. Hubster bought durian & had to eat it outside the car :)) Then we visited Village Park Restaurant, a place known for its delicious Nasi Lemak Ayam Goreng. Then we had a road trip to Ipoh. I even took a picture of the signage. Hollywood style :) On Monday we had a road trip to Penang. We crossed the very long Penang Bridge. I enjoyed the long drive. The view was beautiful. We went to The Chocolate Boutique  - Chocolate & Coffee Museum. To be honest there was nothing much to see but we bought some chocolate bars & it's delicious. We also visited Lost World of Tambun. While my babies enjoyed the hot spring, I was just chilling in one of the huts. As for the New Year's Eve... We spent it inside the hotel room. I guess we were too tired to spend it outside. Although there was a countdown party by the pool at the hotel... I could hear people partying & screaming the countdown. Kukka & I watched the fireworks from our bedroom window. It was beautiful. And loud. Very loud :D

 

Well... I guess this is all I can remember for now. I don't do New Year's Resolution thing but I do have some plans that I would like to do, avoid & achieve in 2019. Wish me luck & have a happy new year to you all :)

Wow

It's been 23 days since my last post. That's too long. I don't know why... But lately I've lost my passion to write and I don't know why. That is not good. Not good at all. First it's because writing is something that I actually REALLY LOVE. Some might even say that I'm good at it. Second it's sort of a therapy for me. Especially for my memory. But now it's more than that. And that is the reason why I'm back "here" and I intend to be back more often. Or at least just like the old days. 

I realize that these couple of days my fingers/hand or my legs and my brain don't synchronize very well with each other. They simply don't work together very well anymore. It started with simple things like for example texting. Lately I've made lots of mistakes while typing messages. In my mind I intend to type A but I type B instead. Imagine how messed up that sort of mistake can be in a message :D Or sometimes I also misunderstand the message I receive because I overlook some words. Or again, instead of reading C I see D.

At home I often walk around because I forget where I want to go. Or I intend to go to the bathroom but I go to the kitchen instead. Then I would stand in the kitchen, walk around the island because I am confused. I don't know what I want to do or what I want to take. This problem is really annoying when I go shopping. Not only I forget what I want to buy and who I am with, I'm also lost between the aisles. I try to take this problem lightly by strolling around, looking at some stuff and just chill. So going to the supermarket has become like some kind of a relaxation for me. But not for the people who are with me. Usually Kukka and our maid Dewi are the ones who become worried or panic when I'm out of their sight. 

Texting long messages or writing like *this* is also difficult for me now. Because sometimes my fingers just won't type the words that I have in my mind. It's like the fingers have their own will. Maybe when you're reading my post here you''ll find repeated words or sentences. If you do, then you understand more what I'm talking about here. That is also the reason why I don't fix the mistakes I might have made in this posting. I want you to know how am I really doing now... And it's also for me. By reading this post, unedited, I can see how am I doing now. 

I haven't tell my doctor about this yet but I will. I already put it on my journal so I won't forget. There are times when I find it funny. But then after awhile when I think about it more... It's actually scary. Don't you think? 

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. 

More about deja vu: http://science.howstuffworks.com/science-vs-myth/extrasensory-perceptions/question657.htm

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!!!!!