Some people say I don’t know what it’s like to suffer. Well, this may be my part of my suffering everyone has been wanting to see.
Over the past year, I have noticed some changes on my right cheek. It started in March 2017 where my cheek started to swell and hurt. Me being me, I just brushed it off. However, when the pain started to be a bit unbearable, I decided to tell my parents. They suggested me to seek help from my dentist (because we thought it was the wisdom tooth, obviously).
Seeing the dentist after months… or probably years (missed appointments and stuff!) went quite well.
“Your wisdom tooth grew! You’re wiser now. Well, they seem fine. We should keep them (yes, both of them on my lower jaw, ok). Just brush gently around the gums and it will be fine,” my dentist said.
Checked, paid, and off we went back home where the supposed treatment began.
A few months later, my right cheek started to feel better. Well, maybe it was the wisdom tooth after all!
But, no. The cheek decided it was time to be swollen again after a while.
Most people won’t notice any changes to my cheeks since I’m slim-mlim liddat. Some people only pointed out how my cheeks are just “chubby”. Funny how it was only one-sided chubby.
Anyway, fast forward to this year, my cheeks felt inflamed for quite several times lah. I went to see my local GP to only have him telling me that it was an insect’s bite and that it will be better after a week or a month of treatment. However, to my dismay, my cheeks didn’t get any better and after a month of medication I came back to get my new meds (which I hated because it made me nauseous). Even when I came back, my GP insisted that it might be an insect’s bite.
But, wait. Seriously tho, if it were to be an insect’s bite…
- What kind of insect has a bite so strong that it doesn’t turn me into like bug-lady (ladybug? Geddit?), but made me look like I got punched by reality instead?
- Why bite me many times lah??
So my dad insisted that he (as in the GP) refer me to a specialist in which he directed me to a dermatologist. That night itself, I discovered I had another cute, tiny lump on my tummy near my navel. Oh great! As if things couldn’t get any ‘better’.
I have never been to a hospital for check-ups so everything was new and exciting to me (yes, it’s odd for me to say that but I enjoy and really look forward to new experiences regardless).
After registering and whatnot, I finally get to meet my dermatologist, Dr. Norazirah. She examined me and told me two possibilities; morphea or lupus profundus.
A biopsy* is needed to determine what is it that I actually am suffering from, hence, on that day itself, I had my first experience of having two tubes of my blood taken and a biopsy.
A week later, the test results were out. So, apparently I have an autoimmune system disease called lupus profundus.
So what is it actually?
Okay, a normal person’s body will have this thingy called immune system, right? Where your body fights off those germs, viruses and bacteria that attacks your body. Alright, now, a normal person’s immune system would be able to identify which cells belongs to the body and which cells are foreign to the body.
BUT… for a person with an autoimmune disease (it varies. I have lupus, some people have something else but that is for some later story), our immune systems are active (I don’t know how active but active enough to cause inflammation I guess) and confused. That’s the keyword guys; confused. Unlike other people’s immune system, our immune systems couldn’t quite identify which cells belong to the body and which are foreign to it. So instead of attacking those foreign bad guys, it attacks ALL of the cells.
Specifically in my case, my immune system attacks my fatty tissue. Seems like a nice idea, right? No. It isn’t. This is not some kind of liposuction process where only a certain amount of fats are burned. I’m talking about having ZERO FATS at all! If y’all paid attention in your science classes in school, y’all would know that our skin has three layers; epidermis, dermis, and fatty layer.
Now, imagine the whole freaking fat layer which serves the purpose to store heat and stuff all gone! GONE!!!
If that doesn’t give you the creeps, then, I don’t know what will. Not only do I look like some living mummy, I also look a bit retarded. In addition, it feels really uncomfortable to have your skin getting sucked into your mouth as you can feel your inner cheek super close to your teeth. As for my cute, tiny lump near my navel (that is also lupus), it has gotten bigger. The thing about fat inflammation is that it works two ways;
- It inflames your fats and it becomes swollen (when you press the affected area, it feels so damn painful).
- It burns all existing fats leaving you with only your epidermis and dermis layers (so instead of looking like your contour is on point, you look like a living mummy and it is very uncomfortable)(this is already a bit too critical).
So, basically that was what went wrong with me for the past year. Anyway, just to clear up some confusion and misconceptions, here are some things y’all should know about the effects of lupus and the medication I am taking on me;
- Autoimmune system disease is a personal disease in which if Person A has it, it won’t be transferable to Person B or C or D or whomever. It is NOT CONTAGIOUS.
- Having lupus means my fats are inflamed. If y’all really care about me (aww), it is very important to let me know if you notice that my cheeks are red. Why? Because that is when my cheeks are getting attacked by my immune system. Sobs.
- I am a vampire now. Not literally but just like a vampire I can’t really be exposed to sunlight. Particularly those UV rays and stuff. One of the effects of taking my meds is that my skin gets a bit too sensitive and a bit too nipis (thin). It only made sense that my recent wounds took longer to heal.
- “Watch what you eat!” Erm, thanks for the advice but my real problem here is my immune system. (I’m still trying to research further on the core problem of this disease). Fret not, my friends. If you wish to take me out to eat, I have no restrictions! I am not allergic to anything… unless you annoy me or something. JK!
So, I guess that’s that. I’ll write more about this when I have the time and input. If you have any questions to ask me about my disease or about anything for that matters, just drop your comment(s) below!
Oh, before I end this post, I’d like to thank my family, friends, lecturers and anyone who prayed for my speedy recovery. Y’all know who you are and I love y’all.
Cheers!
*biopsy: where the doctor takes your skin sample to test what is up with it. In my case, Dr. Norazirah took about 4 mm of my skin as a sample. This process helped determine what I am suffering from; lupus profundus.
Anyway, if y’all couldn’t wait for the next post on #sablupusjourney and are curious to know more about lupus, press here and you shall be directed to a website called DermNet NZ where you will find a super-detailed explanation on the whole lupus family.
Or maybe, y’all should just stick around and wait for the next post because I can make the whole explanation shorter and understandable.
Sabrina Noor 
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