Surprise, Surprise

At the beginning of December, I posted a quote as well as my wish "Make it a December to remember". Apparently, God grants my wish. It is December to remember.

My dear immune wants to surprise me. They want to give me an early birthday present. After a few weeks or maybe months "asleep", they decide to say hello to my body and yes I have to say hello to hospital room as well.

Beberapa hari sebelum opname, tubuh sudah memberi sinyal namun saya menganggap remeh. Awalnya saya pikir saya hanya kelelahan karena terlalu banyak beraktifitas. Tidak menerapkan sistem 1 on 1 (1 hari keluar, 1 hari di rumah). Kemudian semakin hari badan seperti meriang. Saya pikir saya terkena gejala flu seperti kebanyakan orang lalu saya dengan pedenya minum Decolgen (obat dewa yang tidak pernah mengecewakan saya). Keesokan harinya, gejala flu mulai hilang, saya happy lagi. Tak lama berselang, badan mulai tidak nyaman lagi. Lemas dan pusing yang hebat menghantui saya yang akhirnya terselamatkan oleh Kerokan dari mbak Yati. Akhirnya, saya dan suami memutuskan untuk "Pijit Date" di rumah bersama therapist langganan. Anehnya, setelah dipijit badan tetap terasa tidak enak dan ngilu semakin hebat.

The next day, I went to PIM to eat a bowl of Marugame Udon. Gila enak banget dan super kenyang. Sayangnya setelah itu badan saya makin drop, lemas, pusing, mual, dan mulai susah untuk jalan. Sepanjang perjalanan pulang dr PIM ke rumah, saya tak henti-hentinya muntah. Saat itu dokter sudah berpesan di telepon untuk membawa saya ke IGD but I insist untuk gak pergi. Singkat cerita, karena makin parah terbaringlah saya dengan lemas di IGD dengan infusan penambah tenaga. Setelah infus habis, saya kembali muntah yang berujung saya harus diopname.

Konon katanya dibalik setiap ujian selalu ada berkah Allah swt terselip di dalamnya. Ternyata benar lho. Berikut ini beberapa contoh berkah yang saya terima:

1. Perjalanan dari Rumah (Pejaten) ke Rumah Sakit Antam Medika (Pulo Gadung) super lancar. Padahal saat itu adalah hari biasa, jam pulang kerja dan di path banyak orang mengeluh macet tak bergerak tapi perjalanan kami lancar, jalanan kosong sampai di RS.
2. Kamar VIP yang biasa saya gunakan penuh dan akhirnya saya menginap di kamar Suite dengan harga VIP - complimentary dari RS Antam. Baik banget ya? Apa karena saya pasien loyal? Hihihi...
3. Saat kontrol post-opname kemarin, saya diminta untuk kembali lagi hari Senin tanggal 28 untuk treatment sebelum liburan tanggal 29, di pendaftaran saya diberi nomer kecil oleh petugas RS padahal sebenarnya dokter saya sudah full sampai tanggal 31 Desember kalaupun bisa, biasanya saya dapat nomer 60an ke atas, Alhamdulillah...
4. Saat saya sedang dipuncak kebosanan minum obat rutin this past few years, dokter menghentikan sementara obat rutin saya dan fokus dengan obat lambung dan kepala saja. Salah satu obatnya ada yang warna pink dan obat-obat baru ini bikin lumayan semangat minum obat lagi...

Dan masih banyak berkah lain yang saya terima, Terima Kasih ya Allah :)

Saya juga beruntung punya dokter yang care dan cenderung posesif. I highly recommend dr Nanang Sukmana, SpPd-KAI untuk teman-teman yang punya penyakit Ai ataupun gejala mirip Ai.

Wish saya sekarang cuma simple, I want to be happy. Kalau sakit bisa bikin saya happy karena limpahan kasih sayang dari orang-orang terdekat ya saya terima dengan ikhlas.

Sama kalau boleh nambah wish, pengen pergi keliling ACE Hardware dan IKEA dengan kuat tanpa kaki sakit dan kepala pusing maupun badan lemes terus happy-happy belanja di sana.

Katanya Tuhan selalu punya rencana indah untuk umatNya, kira-kira apa ya rencana Tuhan buat saya?

xx
Nada Salma

Assalamualaikum Beijing: Book Review (a minor spoiler alert)

Beberapa waktu lalu, saya berhasil menyelesaikan buku karangan Asma Nadia yang berjudul "Assalamualaikum Beijing". Mungkin telat banget ya karena buku ini sudah difilmkan dan sayangnya saat itu saya kurang tertarik untuk menontonnya. But things change, I really want to see the film and read the book when I know that it isn't about love only but also about woman who struggle from autoimmune disease called APS. Syndrome APS ini merupakan penyakit autoimun yang membuat darah penderitanya kental.

Buku ini menarik dari sisi plot cerita karena membawa misi spesial: meningkatkan awareness tentang penyakit Autoimun (AI) di Indonesia. Yah, walaupun cerita utamanya tetap tentang percintaan sih.

Bagi sesama penderita penyakit AI, buku ini menyuguhkan sebuah harapan. Harapan di mana bagi para penderitanya kadang sulit terwujud seperti sembuh, punya pasangan yg baik dan cinta mati, punya anak yg lucu-lucu. Bukannya mustahil, tapi perjuangannya is not as simple as we think. If normal people have to struggle 50 times, then this extra ordinary people need to fight 100 times harder than the other. 

Overall, buku ini saya beri rating 7/10 karena I really can relate to what the main character feels and what she's been through. Bahkan di beberapa halaman saya sempat menangis ketika membacanya. Kalimat-kalimat yang ada di dalam buku tersebut sungguh mengena.

Adakah yang tau di mana saya bisa menemukan dvd original film ini? I really want to see this film, kindly let me know ya!

Kiss,

NS

A (long) break

Hello October, 

Thank you for your amazing start. After such a long discussion, deep thinking, and thoughtful negotiation, I am officially having my medical leave until next year.

Due to my health condition, I was advised to take a break from work and have some rest. Fortunately, my office and my bosses fully support and understand my situation. Normally, I am not eligible to take medical leave because I haven't work as permanent employee in 3 years and also the period of that leave is only 2 to 3 weeks. 

I was thinking to quit from work as le husb said that health is our first priority. It was a difficult decision for me. I am afraid I couldn't get such an amazing job like this. However, when I gave them my sad letter, my director offered such a tempting things. He said "take a little break. Set things and rules as you want but don't quit. You can come to office twice a week if you want. If you quit, I am afraid you will regret your decision. Why dont you try to have a break and see what it feels like. You already helped me a lot of things and now it's time for me to help you" he said.

It was a tough choice for me. To quit or to have break. And finally, here I am. 

I cant thank my head and my director  (and owner) enough for what they have done for me.  I feel valued and honoured. 

Warmest regards,

Nada Salma

Working with Autoimmune Diseases

Para pengidap penyakit Autoimun pasti pernah mengalami dilema ini; To work or not to work; kalau kerja pasti ada lelahnya, apalagi bekerja di Jakarta where you spend most of your time on the road and/or at office. On the other hand, pasien dengan penyakit Autoimun tidak boleh mengalami kelelahan dan stress karena hal ini bisa memicu penyakitnya untuk bergerak lebih agresif.

Bekerja bukanlah suatu hal yang berat buat saya (sound sooo wise, right? :p). Tetapi pagi hari adalah tantangan terberat saya. Penyakit saya membuat ritme, pola dan grafik tidur saya melambat. Untuk tidur "benar dan "nyenyak" perlu waktu lama begitu pula untuk bangun. Jadi, kalau saya ingin bisa tidur nyenyak mulai pukul 10 malam, saya sudah harus "mencoba" tidur mulai pukul 7 atau 8 malam. Di pagi hari, energi setelah tidur bukannya full malah sebaliknya. Seakan tidur membuat saya kehilangan banyak energi seperti berolahraga. Biasanya aksi balas dendam saya lakukan saat weekend tiba. Saya baru bangun tidur paling cepat pukul 09.00 atau 10.00 itupun karena suami sudah gelisah karena kelaparan menunggu istrinya bangun (he’s such a patient kind of guy and yes I know I am so lucky).

Dulu sekali sebelum tau bahwa saya memiliki penyakit ini, memang saya selalu “kekurangan” energy dan sering mengantuk. Ternyata rasa kantuk berlebihan adalah salah satu tanda dari penyakit yang saya derita. Saya paling gak kuat saat melihat kasur nganggur, sofa empuk, bantal-bantal fluffy dan teman-temannya yang lain. Nah, sebagai wanita pekerja yang jam kerjanya kantoran banget, hal ini menjadi salah satu tantangan yang besar bagi saya. Dokter pun sudah memberi pesan bahwa kalau saya mengantuk (entah dari mana dia tahu bahwa saya tukang ngantuk, never told her before) jangan ditahan. Usahakan mata terpejam 10-15 menit dan jangan dipaksa untuk terbuka untuk menghindari kelelahan berlebih. Alhasil, saya sering ngumpet di toilet kantor dan duduk di bilik untuk tidur sambil memasang alarm agar tidak kebablasan.

Oleh karena itu, bagi sesama penderita penyakit Autoimun memang harus tau batas-batas tubuh sendiri. Jika memang pekerjaannya terlalu berat baik secara fisik maupun emosional mungkin bisa mempertimbangkan pekerjaan yang tidak terlalu mengikat dan tidak berat secara fisik. Jika penyakit tetap tidak terkontrol, mungkin ada baiknya istirahat saja dulu di rumah dan tidak bekerja sama sekali lalu fokus dengan kesehatan kita agar bisa mencapai remisi. Bagaimana dengan saya? Saya masih galau sih…

xx
Nada Salma

Attention Seekers

Living with chronic illness, sometimes you just want to write or post anything related to your conditions. 

For me personally, I do it because I want to raise awareness about the disease as well as try to catch up with other survivors in town. I also want to share what I feel and what I’ve been through during my ups and downs. As a ‘survivor’, it’s a huge relief for me to read and know that there are plenty of people out there (esp. here in Indonesia) who feel the way I feel and experienced similar problem with me.

It is not easy every time someone asked me “are you sick? What kind of sick do you have?” or “what do you feel about your sick? What is it once again? I don’t understand” because most of the time they don’t understand and I have to explain it from the very beginning and then they said “oh..ok..”. So, to keep it short, I usually simplified this disease and make it easier to hear for them.

Fortunately, I found a website where people with autoimmune disease write about their illness by answering 30 simple questions. I tried to answer these questions and hopefully I could explain my condition to everyone as well as understand myself in a better way.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Behcet’s Syndrome, IBD, and early stage of Myasthenia Gravis

2. I was diagnosed with it in the year: 2014

3. But I had symptoms since: 2000 (it’s been 15 years…)

4. The biggest adjustment I’ve had to make is: my activities! I can’t even clean my bedroom, not being able to eat my fave food and snacks, do some outdoor activities (esp. under the sun) and physical sports.

5. Most people assume: I exaggerate my pain because I don’t look sick during the day. In fact, I hide my pain pretty well and managed to get to work no matter how bad it hurts.

6. The hardest part about mornings are: the morning itself! I do hate my morning because I lost 60% of my energy and I feel extremely helpless. I had a very bad migraine, axis and muscle is really  painful most of the time.

7. My favorite medical TV show is: none actually but I enjoy dr Oz and Grey’s Anatomy sometimes.

8. A gadget I couldn’t live without is: iPhone.

9. The hardest part about nights are: Massive headache, migraine, suffocation, insomnia, and spasticity.

10. Each day I take 13 pills & vitamins.

11. Regarding alternative treatments I: drink lemon water every day although I don’t really know the benefit of this treatment, I just like the taste. It reminds me of my soda :p

12. If I had to choose between an invisible illness or visible I would choose: none of those of course. But if I had to I would choose invisible because I will get less “pity look” than the visible one.

13. Regarding working and career: I love my job, my career, and my current workplace but this disease gives limitation to my performance. I consider to change my dream..

14. People would be surprised to know: I have the most supportive husband who taking care of me during my hard time accepting the illness.

15. The hardest thing to accept about my new reality has been: my body’s bad response to monosodium glutamate, heat, constantly tired and the fact that I couldn’t do what I would like to do no matter how bad I want it or how strong I think because thinking strong isn’t enough.

16. Something I never thought I could do with my illness that I did was: take my daily meds, love to take blood regularly, and feel that hospital is my second home. It’s scary sometimes to feel that I miss being at hospital.

17. The commercials about my illness: is not common even for other autoimmune patients

18. Something I really miss doing since I was diagnosed is: driving, running (and other sports activities), and eating Indomie as much as I can anytime I want.

19. It was really hard to have to give up: Indomie and processed food and Sambal!!

20. A new hobby I have taken up since my diagnosis is: being actively in social forum and googling about my illness.

21. If I could have one day of feeling normal again I would: jump around, running as fast as I can, and throw away my pills.

22. My illness has taught me: being healthy is the greatest blessing from God.

23. Want to know a secret? One thing people say that gets under my skin is: “Oh, I feel that too sometimes, take it easy”, “what’s the effect of your disease? It’s not that bad, right?”, and “get well soon” – can I just slap your mouth?

24. But I love it when people: don’t judge and give me a confused-underestimate look and say “I know you are strong!” or “just believe and keep on believing that when God says heal and you’ll be healed”.

25. My favorite motto, scripture, quote that gets me through tough times is: “Just keep swimming” – Dory on Finding Nemo film.

26. When someone is diagnosed I’d like to tell them: Stay strong, don’t panic and you’ll get through this as long as you believe in yourself.

27. Something that has surprised me about living with an illness is: able to know how many friends and family that really care for me and realize that I could be “this” strong.

28. The nicest thing someone did for me when I wasn’t feeling well was: hug me and say just keep on believing that everything will be ok and you have a very bright future waiting for you. Luckily this someone is le husband :)

29. I’m involved with Invisible Illness Week because: I want to raise awareness about this in my country or at least in my society.

30. The fact that you read this list makes me feel: valued and I feel that you do care! Thank You!!

xx

NS

Hello, Autoimun!

6 November 2014 saya membuat janji dengan dr Iris Rengganis,SpPD-KAI di RS Pondok Indah karena sudah merasa frustasi dengan sariawan yang tak kunjung sembuh selama berbulan-bulan, ngilunya tulang dan persendian serta migrain yang secara rutin berkunjung menyapa. Setelah beberapa pemeriksaan lab, pada tanggal 13 November 2014 saya dinyatakan positif Autoimun.

Saat itu dr. Iris menduga kondisi saya adalah kondisi“jelang Lupus” karena dari 4 kriteria Lupus, saya sudah memiliki 3 kriteria.Keluarga cukup kaget mengingat alm. tante saya juga odapus  Saya sendiri cukup bingung dan limbung mengenai penyakit yang saya derita. 

dr Iris kemudian memberi treatment obat steroid metilprenidsolone (Medrol), Vitamin D3 (karena saya juga deficit D3), Calvit& Folavit (untuk menyeimbangkan efek samping steroid). Saya berusaha mencari 2^nd opinion dan akhirnya bertemu dr. Nanang Sukmana, SpPdKAI (Finasim) di RS Antam Medika. Konon beliau merupakan pakar Autoimun diIndonesia and he’s one of the best doctor for autoimmune.

And yes, knowing him is also one of God’s graces for me. Beliau mengatakan penyakit yang saya derita bukan Lupus melainkan Behcet’s Syndrome. I know nothing about that disease, never heard it in my life yet I am now one of penderita penyakit langka ini. Behcet merupakan salah satu penyakit autoimun yang menyerang pembuluh darah tipis seperti area rongga mulut, mata, dan genital.Penyakit autoimun sendiri sampai saat ini belum ada obat yang bisa menyembuhkan secara total tapi bisa dikontrol pergerakan maupun penyebarannya. Dokter selalu memantau perkembangan pasien secara rutin dan memberikan terapi obat-obatan sesuai kebutuhan. 

Setelah divonis mengidap autoimun, gaya hidup perlahan berubah. Selamat tinggal processed food, KFC, MCD dan kawan-kawan, coca cola,and the hardest part is leaving indomie rebus without a proper goodbye. Tidak boleh olahraga dan mengangkat beban berat, kelelahan, paparan sinar matahari,beres-beres rumah…and I feel like I am the weakest person on earth!

Setelah 6 bulan, saat opname di RS ternyata penyakit Autoimun saya bertambaha yaitu IBD (peradangan usus) dan Myopathy (kelemahan otot) pada mata kiri. Obat-obat pun ditambah selain steroid prenidsone saya juga mengonsumsi Imuran (Myfortic).

I still believe that someday I will be normal again. Even if I can’t, I just hope that it won’t get any worse than now.

Semangat!

xx

Nada Salma