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!

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