Prednisolone Tiada Lagi Dalam Diari

Akhirnya, apa yang saya inginkan tercapai juga. Bulan Februari lepas semasa regular checkup di hospital, doktor Tay akhirnya cakap yang saya tidak lagi perlukan ubat prednisolone dan supplement kalsium. Tapi ubat azathrioprine dan plaquenil masih perlu diambil. Ini kerana kedua ubat tersebut tidak boleh putus makan bagi memastikan penyakit lupus berada dalam keadaan terkawal. Dia tanya samada saya teringin nak mengandung lagi. Saya jawab belum bersedia lagi.

Empat bulan sebelum tu, saya asyik lupa makan ubat sehingga saya tak makan langsung. Harap doktor saya tak baca blog ni..heheh. Sebenarnya saya dah bosan nak telan ubat. Alhamdulillah tiada sebarang gejala teruk berlaku cuma ada sikit joint pain yang kemudiannya hilang. Tapi saya nasihatkan janganlah skip makan ubat dikhuatiri penyakit datang lagi dan memberi simptom yang berlainan sebelum ini. Bila fikirkan prekara tu saya tak berani lagi skip makan ubat.

Oleh kerana saya skip makan ubat maka ubat sebelum ni ada banyak extra. Last checkup saya terlupa ambik ubat sampai dua minggu. Kat general hospital kalau tak mahu tunggu ubat boleh pesan kat farmasi masa diaorang bagi nombor giliran yang kita akan ambik ubat kemudian. Semasa saya nak ambik ubat, orang farmasi tanya kenapa lama tak ambik ubat dan samada saya ada skip makan ubat. Maka saya coverline lah yang ubat diaorang bagi sebelum ni ada banyak extra. Aim saya lepas ni ialah berharap saya tak makan ubat azathrioprine.

Week 29 - Week 34

Argh....bila tengok ticker pregnancy week kat sebelah kanan atas tu macam tak lama lagi nak due date. Risau saya. Pada minggu-minggu 29 hingga 34 ni masalah utama saya ialah gatal. Lain semua ok. Selalu tak cukup tido. Dah jadi macam biasa pula. Mungkin untuk saya practice tak cukup tido bila anak dah ada nanti. Heheh fikir yang positif je. Tapi nasiblah takde kesan macam parut cuma luka kecik je. Bila garu kulit jadi merah je. Tak tahu la pula bila dah bersalin nanti....waktu tu semua baru jelas nampak.

Checkup di hospital kali ni tak doktor tak scan. Saya tak tahu anak saya ni perempuan ke lelaki. Harap next week doktor scan bolehlah tanya sekali lagi. Kakak saya cakap perut saya tak membulat macam dia sebab semua anaknya perempuan. Dia suspek lelaki. Orang lain cakap perempuan. Entahle. Tak kisah yang penting sihat.

Checkup dengan doktor sle di hospital sebelum raya haji ni. Ni la last saya akan jumpa dia masa pregnant sebelum jumpa lagi lepas bersalin nanti. So ada beberapa perkara saya perlu tanya.

1) Bolehkah saya breast feed sebab masa baru pregnant dulu doktor cakap tak boleh. Yelah saya kan ambik beberapa jenis ubat sle. Nanti masuk dalam air susu. Saya ambik prednisolone 5mg, plaquenil 400mg, azathioprine 100mg dan aspirin 75mg.

2) Ada doktor masa checkup pregnancy hari tu cakap kalau boleh stop ambik aspirin sebulan sebelum dijangka bersalin. Takut bleeding. Betul ke?

3) Perancangan keluarga untuk mengelakkan kehamilan.

Soalan pertama akhirnya doktor cakap saya boleh breastfeed. Peratusan ubat masuk dalam susu terlalu sikit dan selamat. Kelam kabut saya dibuatnya sebab preparation untuk breastfeed saya tak buat cuma fikir beli breastpump je untuk buang air susu supaya payudara tak membengkak. Sekarang ni saya tengah mencari maklumat mengenai breastfeed. Alhamdulillah dapat juga saya menyusukan anak nanti.

Soalan kedua doktor sle cakap aspirin yang saya ambik tak menyebabkan bleeding tapi kalau ambik warfarin boleh bleeding. So saya tak perlu risau semua ubat saya masih continue makan walaupun lepas bersalin nanti.

Soalan ketiga doktor cakap saya lebih baik elak hamil menggunakan kondom atau secara semulajadi. Makan ubat mencegah kehamilan dan injection tak elok untuk saya sebab semua tu melibatkan hormon.

Persiapan beg untuk ke hospital belum lengkap lagi sebab kain batik tengah dijahit sisinya. Petua orang tua cakap orang mengandung tak elok menjahit. Lagi satu tak elok potong ayam termasuk suami. Bagi saya lah semua ni macam mengarut. Tapi kan saya suruh kakak saya jahitkan kain batik untuk saya. Kakak tak bagi jahit. Saya tak bawa dua beg ke hospital sebaliknyer satu je. Campur sekali barang mak dengan anak. Senang. Breast pump pula lagi belum beli. Next month baru dapat beli bila gaji dah masuk hehe.

Checkup At Hospital

Rabu lepas saya pergi checkup di hospital umum sarawak untuk scan baby. Bila dipanggil doktor tu suruh suami saya keluar sebentar sebab kata nak check bahagian bawah saya. Dah bermain difikiran apelah doktor ni nak tengok kat bawah tu. Tak pernah sebelum ni doktor lain tengok.

Rupa-rupanya dia nak tanya tanda biru pada mata sebelah kiri saya. Adakah saya ada masalah di rumah. Sebenarnya saya ada birth mark sebelah kiri muka warna kebiruan. Kalau orang salah anggap memang macam kena pukul.

Nasiblah saya dah buat laser kat bahagian dahi sebab ramai sangat orang bertanya dan concern. Cuma saya tak buat laser kat eyelid bahagian mata sebab doktor laser cakap tak payahlah nak buat laser kira macam eyeshadow jelah. Takut apa-apa terjadi bila laser bahagian tu yelah dekat mata. Kiranya dah 90% birthmark saya takde.

Doktor gynae taklah betul-betul nak check bahagian bawah saya saja je cakap kat suami suruh dia keluar. Doktor cakap ade juga patient dia ada masalah di rumah. Muka lebam. Diaorang akan cakap bila doktor bertanya. Kesian pada mereka tu.

Bila scan doktor kata semua ok. Ada dua pertanyaan saya pada doktor:

1) Saya nampak perut saya ni tak besar macam orang lain. Yelah dah kira masuk 7 bulan. Kecik je. Risau saya.
2) Jantina baby.

Bila saya ajukan soalan pertama tu dia cakap berat baby sekarang 950g. Kira kecik tapi masih dalam range normal bagi kategori melayu dan cina. Perkembangan bayi ni macam dalam week 27 instead of week 29. Dia check uri dan cakap normal. Kemungkinan kerana saya ada penyakit SLE sedikit sebanyak ada kacau berat bayi. Bagi yang sakit SLE boleh check info yang saya jumpa kat web ni
SLE and Pregnancy. Saya baca SLE boleh menyebabkan bayi lahir kurang berat badan. Sebenarnya ada beberapa lagi risiko. Bagi yang berminat bolehlah baca kat web tadi.

Yang penting bagi saya bayi saya lahir sihat dan normal. Doktor kemudian buat carta perkembangan bayi dan suruh jumpa lagi next week untuk pastikan semuanya ok. Air ketuban saya pula kurang. So saya assume saya perlu minum banyak air. Rupanya tak perlu...doktor cakap baby belum kencing dan air ketuban tu air kencing baby. Baru saya tahu air ketuban tu air kencing baby.

Bagi soalan kedua soalan cepu mas. Doktor cakap kemungkinan baby boy. Dia cakap kalau silap jangan salahkan dia. Masih juga tak pasti....tapi sekurangnyer dapat juga saya clue.

Punyalah banyak appointment saya dalam minggu ni. Hari isnin jumpa eye doctor, rabu appointment gynae, jumaat pergi checkup di klinik kesihatan ibu. Hari isnin depan ni pula pergi check heart di klinik kesihatan ibu di tempat lain. Bila dah masuk 7 bulan dah semakin kerap saya jumpa nurse di klinik kesihatan. Sebelum ni sebulan sekali sekarang dua minggu sekali. Habislah cuti saya sebab cuti saya dah minus kira unpaid leave. Tapi saya ada cara dengan meminta izin keluar ke klinik asalkan tak terlalu lama. Kalau pergi awal klinik dalam dua jam dah selesai so taklah kena potong gaji.

Kena makan aspirin

Hari ni plus 2 hari sebelumnyer saya register kat dua klinik kesihatan untuk ibu mengandung dan jumpa doktor sle. Kalau saya tak register kat klinik kesihatan, saya tak dapatlah jumpa doktor sle sebab saya perlu ambik kad merah dari klinik tu dulu untuk membuktikan saya pregnant dan boleh membuat pemeriksaan berkala ibu mengandung. Dahlah dua tempat. Cubalah satu tempat je klinik kesihatan tu kan senang macam one stop.

Klinik pertama tu dekat kawasan rumah tapi tak ade doktor kat situ cuma misi je. Diaorang akan check air kencing, fizikal dan ambik darah. Pertama kali saya pergi register tu saya tak tahu perlu bawa sijil nikah dan kalau boleh bawa air kencing dari rumah lagi baik. Tahu tak misi suruh saya beli buah asam kat kedai sebelah untuk guna bekas tu salut air kencing. Diaorang takde botol untuk tujuan tu. Saya punyalah confius dan tanya orang kedai tu. Nasib diaorang faham sebab ramai yang buat macam tu. Satu hal lagi saya takleh nak kencing sebab dah kencing kat rumah. Belilah air mineral 600ml. Nasib misi faham, bila tiba pemeriksaan terakhir baru ada air kencing tu pun sikit je.

Pasal ambik darah pula, misi cucuk kat sebelah kanan tak dapat darah. Cucuk sebelah kiri tak dapat juga. Masih kat tangan sebelah kiri tu jarum masih di dalam, misi pusing jarum tu ke kanan tak dapat juga. Pusing ke kiri nasib ada darah keluar. Kalau tak risau juga saya. Nasib tak sakit.

Kat klinik tu saya diberi vitamin c, vitamin B complex, asid folik, iron dan garam beriodin. Saya pelik juga diaorang bagi garam. Misi cakap letak dalam masakan untuk elak tiroid or beguk. Ambik jelah. Tak payah beli garam lagi.

Bila time scan tu memanglah tak berapa jelas lagi sebab masih kecik. Seronok juga sebab dapat tengok kat dalam rahim. Pergi ke klinik nombor dua, kat saner ade doktor. Tujuan ke klinik no 2 tu nak jumpa doktor je. Scan kali kedua lagi. Lepas tu cepat-cepat saya buat appointment dengan doktor sle.

Bila jumpa doktor sle cakap anticardiolipin saya positif tapi lupus coagulant negatif. So saya terpaksa ambik aspirin 75mg tiap hari untuk mencairkan darah bagi mengelakkan keguguran. Saya masih mengumpul maklumat pasal antibodi anticardiolipin dan lupus coagulant. Kalau dah sedia saya akan postkan. Harap semuanya ok.

Coping With SLE/LUPUS- changes in lifestyle

After a few months being diagnosed with SLE, i then realise that i need to learn how to cope with sle. We do things in our normal way before we are sick but all of a sudden we cant do that things normally and it might take some time for us to adapt in this new situation. It certainly changed our life. We might think it will be impossible to lead a normal life but this is not necessarily true. The important part of coping with SLE is learning to take control over as much of our life as possible. Focus on doing the best we can to help ourselves instead of waiting for miracles such as hoping our lupus would go away forever.

Here are some general guidelines for living with lupus (from a book 'Coping With Lupus' by Robert H. Phillips):

• Be aware of how your body feels. How is it reactive to the things you are doing? Act accordingly.
• Understand what makes you tense, knowing what you can and cannot do to change or avoid the symptoms and problems associated with lupus.
• Pay attention to yourself, your goals and your needs.
• Elicit the help of the people around you. Use relationships as a buffer. Join together with others to tackle the cause of your stress.
• Use laughter and humor to reduce stress.
• Build on the talents and activities you can still enjoy.
• Concentrate on strengths and accomplishments rather than dwelling on negative thoughts.
• Follow a healthy diet.
• Get enough sleep. Allow time for rest and quiet and don't try to solve problems at night or when you're overtired.
• Exercise to reduce the effects of stress by bringing blood to the muscles and the brain and stimulating production of the chemicals that give you sense of a well-being.
• Have fun in life. Spend time on hobbies that you enjoy.
• Realizes that you need to do things for yourself and actively think of yourself separately from the symptoms of this disease.
• Think of yourself as a formidable person and not some tired, miserable, suffering person.
• Learn all you can about lupus and seek out appropriate professional help. It is important to recognize when to ask for help - medical, counseling, spiritual, whatever it takes.
• Work on enhancing you relationship with your partner-adapting to the symptoms and being able to experiment to find the best ways to enjoy intimacy.
• Relax to reduce your experience of pain.
• Have your mind, body, and spirit in the best shape possible, so you can conquer anything that comes along.

Know The Doctor

When we are sick we want a doctor who care for us, trust and listen to every single word we said. Doctor that we feel comfortable to be with. My first doctor was a physician. A senior and ceo of this private hospital. A few times of my appointment with him i realised that after 2 minutes he will get up and seem to give a sign like 'ok now get out from my room, your consultation is over'. Sometimes i forgot what i should said to him. I didn't like him and the only medication he gave me was prednisolone (steroid). I felt a RM50 just to see the specialist in two minutes is not worth it. After few months, with low dose of medication and two months off the medication there were many downs. I know his intention might be to reduce the side effect of prednisolone. But doc i feel so weak and it effect my work and life. Anyway because of that, the flare came along with new simptoms.
I seek for another doctor from another private hospital. He said i shouldn't be tapered off the medication since i still new. He wanted me to see a kidney doctor but since it was holiday season (Hari Raya) the kidney doctor is still on leave. Hahaha........he wrote the letter to my physician requesting for my test result. My physician refused and said just stay here and i will refer u to a kidney doctor here.
Ok....so finally i met the right doctor that care for me. He care and would listen to everything i said. Probably because he seem to have very few patients. He gave me steroid, immunosuppressant and antimarial drug that work perfectly for me. The immunosuppressant he gave me name Cellcept was only a sample supply for two months. He said it will cost me RM1500 just for cellcept. It is my whole salary for a month. I said to myself that i need government money to help me hehehe. So i decided to be referred to government hospital and i'm now paying RM5 instead of RM300 every month including the medication. The only different is i have to wait for two weeks for blood and urine test result and then see doctor compare to private where i can see the doctor next day.

My SLE

I know everyone has their own experience with chronic disease. We cant determine our future in health. It is in the hand of god who decide it. I was surprise that i had lupus in my twenties. It all started with a wrist pain. A week later, all the finger joints feel stiff until i need help from my sister to take off my own clothes in the morning. Then the toes, elbow and shoulder came along. I think every week i go to different clinic. The first reason was i need sick leave....hehehe..so that i can prepare things for my wedding. One month till my wedding day. Second was of course i'm afraid what was wrong with me. All the doctor said the same thing i might experience rheumatoid arthritis and need further checkup.
My father sent me to Normah Hospital very near to my house 500m away. After checkup, my uric acid was high and i though it was gout. My oldest brother has gout. Maybe it run in the family. Rheumatoid came out negative. My wedding day is one more week left and i still dont feel well. I begin to have fever and weak. I complaint to the doctor and burst in tears probably because of stress and worried for the wedding day.
I was refer to a physician. He said i had an autoimmune disease. But dont know which type. So he did further tests on me. At home, i check on the internet one by one about autoimmune diseases. Until i found two diseases that might match to what i experience. One of it was SLE. Two days later finally they said it SLE.
Doc gave me 20mg prednisolone a day. Finally the next day the pain gone. Happily sat on dais with my husband and didnt complaint any pain.