Sunday, October 9, 2011

The Agony of Stevens Johnson Syndrome

For someone that has never gotten admitted for anything except for delivery, this year, somehow I have managed to set a record for myself for being admitted into the hospital for 3 times in less than 6 months!

It started somewhere in June this year, where I was admitted for ectopic pregnancy. And then, just after Raya in September, I had middle ear effusion, which required a surgery and a course of antibiotics. And just when I thought I am done with hospital, I was again tested with Stevens Johnsons Syndrome, a severe allergy reaction towards medication that required immediate medical attention.

It started one day, when I woke up with burnt feeling on the tip of my tongue. I ignored it and went to work anyways. At work, I tasted some of the chocs and chips that my colleagues brought back from London, and my throat actually burnt this time when I tasted one of the dark chocolates. I stopped taking them and drank lots of water instead.

At home, my eyes started feeling dry and they were bloodshot red after some time. I went to work with shades the next day anyway, thinking they were just strained and would get better after a while. They didn't, and I asked to be excused early to see a doctor.

I travelled to HUKM and went to see my sister doctor. After examining me, her diagnosis for me was severe viral infection as the symptoms then were not as obvious.

However, the next day, my condition got worse. My lips got swollen with a few blisters on it, and rashes started to appear on my body. I MMS-ed my sister my swolen lips picture, and just one look at it, she told me to get myself admitted immrdiately as it was confirmed to be Stevens Johnsons Syndrome, not viral infection as diagnosed earlier.

By then, I had multiple ulcers all over my throat, my tongue, my gum, and my lips. Basically, the ulcers were all over my mouth. Swallowing was painful, let alone talking and eating. More and more rashes started to come out all over my body, and my vision started to become a little blurry too due to this. It was really frightening!

Rashes that started at my palm, then spread to the rest of the part of my body

Did you know that Stevens Johnsons Syndrome is one of the deadliest sickness with high death rates? You can read more about it here. Lucky for me, mine was detected early and isn't as serious. I was given some steroids to supress more blisters from coming out and some oral anticeptic during this time. The worse thing is, I was told that it would take 1-2 weeks for me to fully recover! Can you imagine the depression I felt having to know that I would have to endure the agonizing pain for more than a week? :(

Some of the relatives that came to visit me at the hospital. Thanks for coming, guys! :)

As talking was impossible during this time, the only means of communication was just writing and sign languages. Bunyik yang keluar pon bunyik intonasi je, cakap dah macam orang bisu. Tapi nasib baiklah Aien paham most of what I tried to tell him! Seriously, I was really impressed!

When it comes to food intake, doctor said I do not have to be on drip if I can eat and drink well. As such, I forced myself to eat, no matter how painful it was, just so I could get better faster. Mealtime was no more fun, every mouthful is painful. And the worse part is, all that I could eat then was just porridge -- for every single meal! Of course, if you call it eating la, sebab I dont even taste the food. Main telan je semua. I was so sick of taking porridge everytime, that I actually burst into tears when I opened the bowl covers and saw porridge yet again!

Anyway, after 2 days of being admitted, the doctor was confident that I was able to look after myself at home and allowed me to go home. Before leaving the room, the doctor told me to be ready as my condition would get worse before it gets better for the next few days.

She was right. After a few days, more rashes started coming out all over my body, my blurry vision still not making much of a difference and my lips.. well, if I didn't know better, I'd think that this was some sort of uncurable weird desease! They went from swollen, to gory looking lips!

Brace yourself, as I am about to show you the Stevens Johnson Syndrome's healing process. It's going to look nasty as you scroll lower, so if you're the type that get disgusted easily, you might want to skip this part.

Now the picture that you see above, is the condition of my lips at the peak of its state. They turn black due to the blood + dead cells. As the healing process starts to kick in, new skins start to develop.. and here's how my lips looked like..

During this time, my bestfriend was Vaseline as I applied it a lot to keep my lips from sticking together as well as to keep them moisturized. Ice cream helped to ease the discomfort in the mouth too. It is also important for one to not pick on the scab, because when it peels, it bleeds, and the scab will form again.

Despite all this, my sister said I was lucky, because for some serious SJS cases, one could expect blisters and lesions like this to spread all over AND inside the body, which could ultimately lead to death! I cannot, CANNOT imagine if THAT were to happen to me! T_T For that, I would like to thank her, who was quick to detect my illness and for being there for me during that difficult time. You've always been there for me, sister, and I can't thank you enough! <3

Anyway, after about a week, the rashes at my body started to dissappear, and my vision started to go back to normal. My lips, however, took 2 full weeks to recover.

It seems that the culprit seemed to be the antibiotic I took after my ear surgery. I have never had any allergy reaction towards medication before and it is very unfortunate that I had to find out about this the hard way! Nevertheless, I learnt a lot from this episode and one of them being -- never go easy on ANY medicines. Always be cautious on what goes into your system, because really, it really isn't funny anymore when you cant talk or see!

- Posted using BlogPress from my iPhone


CikLilyPutih said...

get well soon thara.. makan ubat tau.

we bloggers miss you sesangat nie

semut-terbersin said...

Kesiannye u.. My dad pernah kene mcm u ni masa i kecik dulu.. Mmg teruk gila condition dia..
Btul tu u ckp, but then how do we know whether obat tu seswai ngan kita ke tak.. Selagi tak kene allergic, selagi tu kita ingat semua obat ok ngan kita kan?

hamzah ian said...

semoga cepat sihat thara..

mommyNadia said...

glad u are getting better now babe!!And ur lips dah back to worry another few week,sure dapat balik ur sexy lips tu..hehehe =)

Right after u twit about SJS,Nuurill immediately googled and show me about that,terkejut jgak tgk.
But Alhamdulillah kan,ur case dah detect awal2..tak sangka boleh lead to death.Nauzubillah!!

Have a gud rest before start work balik k!!

RieNa said...

ya allah, sampai mcm ni skali! kesiannya Tiqah. Alhamdulillah,mujur dah baik.

yes, tiqah beruntung punya kakak mcm sarah. she's always there when we need her. May Allah bless her. ameen.

stormz said...

get well soon thara

worryfather said...

oh dear oh dear.. that looks very painful and frustrating!

you are one tough and strong lady in order to go thru this, and took pictures to share with us. THUMBS UP!

Glad you are recovering well!!

Take care!

izdi said...

Wow...get well soon thara....
take care...terkejut aku tgk...adeh..sabar bebyk yer...

KiD said...

adooi... ciannya awak.. get well soon ya!

rebellion said...

sampai cam tu kalo alergic yer, bahaya gak. memang tak leh makan mende tu jer la, selagi tak kene memang kite tak tahu kite alergic ngan mende

Nadine said...

So so glad ur getting better and better. It was frustrating to read all ur tweets since day 1 u were in pain.

thank you for sharing this with us. seriously, I never thot that allergies can be such a threat like this. no wonder everytime the Dr. will ask do we have any allergies with medicine...but then yeah, kalau kita tak tau sbb x pernah ade allergic, cemana kan?!

Mijoe said...

take care n get well soon!

ujian dari Allah tu...

amirnawawi said...

Teruk jugak yer kak. usually apa yang saya tahu is only allergic jer kalau jadi camnih.. ni Steven Jonhson bagai nama penyakit. Mesti sakit sesangt kan. Saya ada ulser lam mulut pom demam seluruh badan..
Get well soon.. Aminn..

mommaholicSURI said...

Yey! Thara dah baik!! I doakan lepas ni you sihat-sihat terus dah tak sakit dah. Sedey tau dengar u masuk spital banyak kali. Take care babe!! :)

Anonymous said...

alhamdulillah bibir tu dah ok kan..wee tengok gambar kt pen merah punye entri :)

Matjoe said...

adooi nampa derita sesangat... ciannya awak.. get well soon ya!

Myvitrd said...

aduh deritanya.. mesti sengsara nak makankan.. apa pon semoga terus sihat

Cherie said...

OMG TIQAH! seriously i cringed looking at the pics! poor, poor u :( ur brave. i wouldnt even dare take a pic if i was in ur position! I;m glad ur better now :)

ps ; poor aien deprived of ur lips that long! :P

uyun said...

Thara! tekejutnye i bc neh. never heard of this syndrome before. luckily ur sister detect it earlier kn? glad that u r getting better now! u r a very strong woman u know. ;)

Thara said...

ciklily :
thanks babe! im all better now alhamdulillah, and u'll be seeing a lot of me after this, so watch out! :D

semut :
yeah man, it was horrible! nobody should ever go through this! :( and true that, selagi tak kena, selagi takkan tau. tapi tu lah, tak sangka my reaction sampai terok mcm gini sekali! :(

mekjah :
thanks mekjah, im much better now alhamdulillah :)

Thara said...

nadia :
haha thanks nadia, im getting my sexy lips back, cuma skarang the sexy lips are a bit gory sbb dia mcm lebam2 sket, effect of this whole thing. hopefully it turns back to its normal color soon!

ps : yesss, some people got it worse than me, it's scaryyyyy!

k riena :
yeah it was, perit sangat masa tu :( and true that, she's the best sister/friend anyone could ever have! <3

iylia :
thanks iylia, im much better now alhamdulillah ::)

Thara said...

worryfather :
it was very painful & frustrating, lim! seriously, we all have to becareful when taking meds because they're still drugs, and this is what drugs can do to us! :S

thanks lim, i thought it's very important to let the people know the effect a drug could do to us. everybody needs to be always careful of what goes into our system and only take them if only they're necessary! because this whole thing? is not pretty.

izdi :
thanks izdi, im much better now alhamdulillah :)

kid :
thanks kid, im much better now alhamdulillah :)

Thara said...

rebellion :
yeah, sebab i sebelum ni mmg tak penah allergic dgn apa2 ubat pon. first time ni. sekali kena mcm gini punya terok.. haihs. just gotta make sure to be careful with meds after this!

nadine :
yes true that. in fact for this pon, doctor ada tanya i if im allergic to any meds, tapi sebab i tak penah allergic to any meds sblm ni, laju je la i ckp tak. sekali jadik mcm gini, azabnya la hai. :( tp i learnt a lot from all this while i was sick. so i percaya semua yang jadik dkt i ni, ada hikmahnya di sebaliknya. :) so, in the future, make sure to be always careful of what goes into our system! take meds only when it's really, absolutely necessary!

mijoe :
yeah betol tu mijoe, ujian dari Allah and i pon percaya ada hikmah di sebalik sume ni :)

Thara said...

amirnawawi :
hehe amir, kalau amir tgk akak live masa tgh sakit masa tu, misti seram dah. bukan dah nampak mcm penyakit, mcm dah kene buat dgn org pon ada. :P akak tgk cermin tgk diri sendiri pon seram tau. imagine org2 keliling akak masa tu! naseb baik family was very supportive kalau tak, misti breakdown gila2.. :)

thanks for the well wishes amir, really appreciate it. :)

nuurill :
a'ah u i pon penat dah keluar masuk hospital. agaknya Tuhan nak cuci dosa i ni.. :) hopefully this would be the last though! aminnnn!

sis92 :
alhamdulillah.. dah banyak ok dah ni, cuma ada la sket lagi lebam2 :)

matjoe :
thanks matjoe, im much better now alhamdulillah :)

Thara said...

myvitrd :
Ya Allah, kalau boleh rasa mcm tanak makan je dulu masa tu. setiap kali masa makan je, rasa azab je. tapi kene paksa diri makan, sbb kalau tak makan, lambat baik :( so setiap kali mkn, kena letak ubat kebas. then tiap kali makan, makan bubur je. bubur segala jenis bubur dah makan -- bubur kosong, bubur mcd, bubur lambuk, bubur kedai.. nak muak dah sampai! syukur sgt that it's all over now..

cherie :
i cringed myself looking at myself last time! i was afraid looking at myself! one time kan, aku bangun tido, then aien pointed at me, and said "EH DAH MACAM JOKER!" seriously man. darah mengalir sampai ke pipi dkt dua2 belah ok! it was stupidly scary! T_T aku nak tido pon takut, sbb bila bangun tido, bibir aku melekat! and i had to force myself open, then blood with trickle down like drip drip drip! T_T so glad that it's all over now, alhamdulullah. gotta post this up to let ppl know the danger of meds! take meds only if it's really & absolutely necessary!

ps : hahaha mengong la kau niiiii! :P

uyun :
hehe i pon tekejut tengok u comment dekat sini! :P thanks for dropping by, uyun, much appreciated. :) yeah, it was really bad. i rasa kalau akak i takde, confirm it would be even worse than this. bersyukur sgt ada sibling dalam medical line. thanks uyun, i rasa sape2 yang kena apa yg i kena ni pon misti automatik kena jadik tabah sbb kalau kita sendiri tak tolong diri kita jadik tabah, sapa lagi nak tolong kita kan? :)

Brocade Blue said...

thara, that your lips? looks like something out of medical book..anyways didnt know u worked for nuffnang!! i have been trying to get traffic but i am still at RM after a year! LOL!

BabyBooned said...

Ya Allah i baru je read this entry, so lambat! Glad u've recovered n that ure alright now! That looks sooo painful la, u poor thing..

Jo Ann said...

Oh,Thara!Never knew what was happening to u when i read yr tweet until i read abt it in your blog. I guess u had a hard time facing all these.
Glad that you're recovered now!
With lots of love!

the::bored::sha said...

Ya Allah, Thara, sorry 2 hear this. overall u sgt kuat...! Allah menduga umatnya, kan?