Love & Lupus

                    Actually "love & lupus " ni one of the chapter daripada buku yg aku pernah baca..in fact ,my favourite book.."LUPUS HANDBOOK FOR WOMEN" selain info pasal SLE..ada lagi cerita pasal pregnancy & lupus,living with lupus & etc...lagipun rasanya most of the SLE  patients ni umur yang layak dicintai & mencintai..hehe..aiceh..aku dah jadi macam Dr love pulak..
 

      Tapi soalan lazim yang biasa Dr  tanya.."Have u married?Have any plan to get married?Please, if you want to get married & pregnant ..you must tell us because we have to plan all your medications..most of your medicines like prednisolone not suitable for pregnancy& fetus...the chemotheraphy(cyclophosphamide)..plus Azathioprine(ubat chemo version) pun very dangerous to the fetus..in other words if want to get pregnant..have to plan carefully"..

              Biasa la jawapan aku..erm,I dont have any plan yet...sejujurnya bila dah sakit macam ni,perkataan cinta & kahwin tu aku dah tak pikir pun..kalau dulu sebelum sakit maybe kahwin jatuh dalam no 10 of my future plan..lepas sakit, kahwin dah masuk dalam no 1000..huhu....sekarang aku cuma pikir nak sihat..nak sihat & nak sihat je..fullstop..oklah,kalau Dr cakap SLE tak boleh recover cuma boleh di control..its ok...aku sudah sangat  bersyukur kalau my disease already under control..aku tak demand lebih dah..

         Biasa la bila umur 28,soalan biasa orang tanya,"bila nak kahwin?"..bosankan soalan tu..huhu...jawapan standard aku biasanya macam ni.."Saya tunggu Brad Pitt masuk meminang!"...hehe...hey!believe me...its really work ok!!haha..selalunya orang yang tanya soalan tu akan terus senyap bila dengar my "brilliant" answer...Sebenarnya,dengan kata lain,aku takut nak take any risk kot..yup..we have to take risk & thinking positive..tapi dalam isu ni aku memang takut nak take risk..lagi satu,aku ambik masa jugak nak educate myself pasal sakit ni...tu pun sampai sekarang tak fully educate lagi..hehe..so,macamna la nak educate future husband & future in law lagi.

          Oklah,kita doakan yang baik baik je untuk diri kita..tapi kita tak  sure juga apa yang akan jadi in the future..macamana if our disease getting worse??...& ditinggalkan lepas tu..mesti lagi tertekan kan??sudah la badan sakit..hati & perasaan pun sakit...everybody have their own opinion..this is just my personal opinion:-)..I just want to live happily..no stress ..terutama stress daripada perkara "remeh " seperti "love"..sebab banyak lagi perkara penting dalam hidup ni perlu difikirkan..yes, I need love but from my beloved families,friends & peoples around me....as long as  I m happy & satisfy with my life that's  more than enough...sebelum sakit, aku pernah jugak sakit bila putus cinta...at that time,aku rasa aku lah insan yang paling malang sekali...huhu..dramatik pulak...tapi lepas sakit ,I just noticed sakit putus cinta tu cuma 10% daripada segala kesakitan yang aku lalui sekarang...but,even just 10%...aku tak nak lalui lagi sekali..sekian,terima kasih...hehe..

                          Salah satu perkara yang menakutkan  bila selalu pergi/admit di wad nephrology (buah pinggang) adalah aku jumpa ramai patients..lepas sakit terutama lepas haemodialysis(cuci buah pinggang)..ramai yang sakit keseorangan...masa bercinta memang indah...lautan api pun konon nya sanggup direnangi..huhu..lepas sakit ...aih....aku  cuma try to be realistic..hidup ni tak selalunya indah... dengan semua senario yang terjadi didepan mata..aku ada kawan yang umur 25 tapi have to go through haemodialysis since last year..now,a single mother..living with 2 years old daughter..her ex husband?want to get divorce... ada 1 patient lagi ,muda lagi dan pregnant..tau tak dia kena dialisis everyday sepanjang dia pregnant..bayangkan 9 bulan tu..kagum betol dengan semangat dia..

                     Admit di wad pun banyak kebaikannya ...kalau kita rasa kita susah,kita sakit teruk..ramai lagi yang lebih susah & sakit lebih teruk daripada kita...ada 1 kisah ni..ada 1 budak umur 13 tahun (masa tu 2009..sekarang dah 15)yang jaga mak dia yg buta & kena dialisis..kesian budak tu,orang susah pulak tu...bayangkan everytime bawa mak dia untuk haemodialysis naik bas!!bas kat kedah ni bukan macam bas kat KL..bas kat sini,aircond pun tak de..huhu..ayah dia? dah tinggalkan mak dia lepas mak dia sakit...kagum sangat dgn her spirits& kematangan budak tu..oh, ada 1 soalan yang dia tanya kepada aku,buat aku menitis air mata...dia tanya macam ni..."kak,saya ada ambik insurans takaful(budak sekolah kena bayar RM1 kot)...kalau ada apa-apa jadi kepada saya,mak saya dapat tak duit insurans tu??"...sedih kan....how come this 13 years old boleh fikir sampai macam tu....unfortunately,december 2009 aku dapat tahu mak budak tu dah meninggal....apalah nasib budak tu sekarang?aku doakan yang terbaik untuk dia...sayang sebab dia tak de handfon&aku terus lost contact....tapi dalam banyak-banyak kisah yang tragis ada jugak terselit  cerita yg best ,ada sorang pak cik ni,sayang betul dekat wife dia yg kudung,buta & kena dialisis....tiap2 malam sanggup tidur di bawah katil...diulang..tidur di bawah katil,ok!!tiap-tiap  kali pi toilet ,siap dukung wife dia lagi..adoilah,mana lah nak cari orang yg sanggup bersusah payah dengan kita mcm tu kan....diaorang bukan orang kaya pun..balik naik motosikal je..tapi kaya dengan kasih sayang..sangat touching..

               Just want to share some of the content of "love & lupus " chapter from "lupus handbook for women"

                          Women with lupus share many of the same problem in the relationship arena.However,there are some differences...if normal women have this questions..Does he really like me?Do i like him?Do we have enough in common?.

                       But women with lupus is grappling with a far more difficult question like..When should i tell him that i have lupus?During the initial stage of dating,no need to reveal too many details including your health status.its not becoz u have to be ashamed about living lupus,its simply not a relevant topic in casual interaction..
If ur relationship getting serius,barulah tell your boy friend about your disease..if he want to spend his whole life with u he has to accept..lupus is part of what i am..if u love me..u have to accept my lupus..

                         If someone is unwilling to accomodate u in any way,it is a good sign he is not matured enough to handle the situation..if ur goal is to get married,maybe he is not suitable for u..but if he can accept u as u are ,of course the marriage can be proceed..at the beginning,give ur future husband better understanding about the disease..make appointment with you & him sit down with ur doctor &have a straightforward,honest conversation..he should fully understand your diagnosis & possibility u could get a lot sicker..about children,usually many women with lupus can have children with no or little problem..there is always the possibilty that u may not be lucky..your future husband should know this...

                         Everything that i had written above is just my personal opinion..everybody have their own opinion right??As a Muslim of course we  have to believe on Qada & Qadar...ajal ,maut,jodoh semuanya ditentukan oleh Allah ...so,I just pray the best for myself:-)

Reference:

1)Lupus Handbook for Women,Robin Dibner,M.D..& Carol Colman