SLE Diary : I feel...

Assalamualaikum.

Salam maulidur rasul dan selamat tengah malam.

Tadi pergi surau. Seronok betul dapat dengar ceramah pasal Rasulullah SAW. Cara penyampaian ustaz yang berceramah tu memang best, macam Ustaz Azhar Idrus J Alhamdulillah dapat jugak sedikit sebanyak ilmu baru, dan sememangnya indah bila berada di sana. Dapat beribadat dengan tenang. Betul-betul indah. And it made me feel like I was in Tumpat. Setiap masuk waktu solat, we had to be in surau for solat jemaah. Dulu-dulu always memberontak, tak puas hati sebab kena paksa duduk kat surau. Tapi bila dah biasa, seronok betul berjemaah and lepastu buat ibadat lain, at least boleh rebut peluang di samping isi masa.

I went to surau with my mak ayah. At first rasa segan sangat because I rarely get to see the other neighbours. Kalau jumpa pun, bila pergi surau or ada occasion lain. Tapi since I dah lama tak pergi surau dekat rumah ni, memang dah lama lah tak jumpa semua orang. And I met Aunty Rahimah. She was a medical staff, something like that lah. And my mak told her that I am having difficulties with my sakit. And to my surprise when my mak cakap I ada SLE, she asked me, ‘Are you sure?’ and I said yes because it was confirmed by the doctors already. I had blood tests, and yes, now I am a SLE patient. Currently known as a Lupus fighter.

And she gave me a lot of advice. And I pun terlepas cakap bahawasanya I tak makan prednisolone. Adeh dah kena brainwash dengan Aunty Rahimah. She said it is compulsory for me to consume prednisolone, just as what the doctor asked me. Alahai. Bukannya I taknak makan, tapi banyaknya effects that I have to bare bila I makan. And I hate it. I have to face kebengkakan pada muka. Dulu masa mula-mula makan prednisolone, masa tu preskripsi cuma satu bijik = 5mg, tu pun muka dah bengkak semacam. Mata jadi sepet, ala memang bengkak lah senang cerita! Habis semua orang pun tegur, even my teacher pun tak kenal I. Aduh betul-betul tak sanggup nak menerima kenyataan I have to eat it by now. Dahla dos sekarang 3 bijik = 15mg. Mak aih banyaknyaaaaaaa T__T

Dan sekarang tak tahu nak makan ke tak. Yes I know the prednisolone is to maintain my ESR, and prednisolone ni special for SLE patients sahaja. Kalau sakit sendi biasa pun doktor tak akan bagi makan prednisolone. Huuuuu. Tapi tak tahu lah. I really need someone yang boleh dengar how I feel about my SLE, yang boleh bagi pendapat, yang boleh melegakan hati, and I hope dia baca entry ni huhuhuhuhuhu.

Aunty Rahimah talked a lot about SLE. She probably know so much things pasal my sakit. The things yang I baca dalam Google, Aunty Rahimah pun tahu. And I feel good bila ada orang tahu details about my sakit cos I don’t have to explain much. Like my mak, she know a little bit about my sakit because I’m the one who tells her. If she google it, then she’ll know more J tapi walaupun mak tak google, she understands real much how I feel. Oh mak, terima kasih a lot.

I feel bad because I don’t know how to take a good care of myself. Aunty Rahimah said, I have to wear mask if I dekat public places. Of course, I will after this. Thinking of having sanitizers in my handbag also, yeah, takut jangkitan kuman and so on. Gloves, socks, masks, and pashmina are the things that I need to bring anywhere I go in my handbag, inshaAllah. So many precaution steps that I have to take, dan kadang-kadang, datang dalam pikiran, who’s going to accept me with whatever I am facing right now. I mean, future mate. And I feel sad thinking about it.

Tapi tadi when talking to Aunty Rahimah, she said it’s gonna be fine if SLE patients wanna get pregnant. And I felt a little bit relieved. She said, I’ll be okay one fine day if I wanna get pregnant, it’s just that I have to check with the doctor first. Bila doctor dah kasi greenlight, baru I boleh mengandung. Because the doctor have to makesure first that I’ll be okay, my meds are okay, my hormones are stabilised and so much things to be monitored. Kinda hard, tapi dengan izin Allah, I believe in kuasa Allah yang Maha Besar, Allah akan permudahkan segalanya bagi hamba-Nya, inshaAllah.

To my future mate,

Terimalah diri ini seadanya. 

Sekian, assalamualaikum J