by - Tuesday, May 07, 2019

Bello. It's been a while, and I honestly didn't think I will be updating about this instead of my solemnization. Okay I promise I will get that up after this some time next week because I have plenty of time now. Okay so— If you’ve been following my Instagram, you’d know I’ve actually been hospitalized for the last 3 weeks. My mind is finally clear enough(I was so high on drugs I could barely focus) to sit down and explain what exactly happened but this will be too long to be posted to Instagram so I've decided to blog instead.

TL;DR, I am diagnosed with Adult Onset Still’s Disease(AOSD).
A condition so rare it’s one in a million.

It all started off with a fever that never went away. I had actually gotten a flu vaccine in preparation for my Taiwan trip, but 2 days later I was down with really bad cough, and fever of 38°C-39°C that wouldn’t subside. My immune system has always been good, and was never the kind to fall sick easily. So when I got a fever, along with weird rashes and joint pain, I knew something was not right. So after a week of panadols, I saw the GP and GP thought it was just some mild allergy reaction. I’ve never had any allergies my whole life, so wthell(?) He gave me some meds, told me to go back for a review 2 days later to see if the rash would subside. Fast forward 2 days later, condition did not improve, GP suspect I was down with dengue and told me to go A&E to get a blood test because his lab isn't open on Sundays.

Checked myself in at NTFGH A&E for a blood test, and I’ve been imprisoned in the hospital ever since. Blood tests came back negative, I was ruled out Malaria, Dengue, Chikugunya, Zika, and whatever the hell you could rule out. But I still had fever, and thus I was admitted. Suffered a good 3 days due to negligence of the nurses there(don't really wanna elaborate, but it was terrible) before I demanded a discharge so I could make it to my Taiwan trip on the 20 April. At this point, the doctors from NTFGH still didn’t have any diagnosis. Hell not even a prognosis, tsk. But I was feeling better, and the fever did not spike, so I thought ok lah, just panadol if anything happen loh.

Well, as life will always fuck you up at your best moments, I relapsed on 19 April with crazy weird petechiae rash over my limbs in the shape of snake &ladders and was rushed to TTSH A&E. (Yes, I missed my trip, sigh)

No, I did not self harm. It wasn't itchy, and I did not scratch myself. The rash literally manifest in that form like I was possessed.

When I got to TTSH A&E, doctor who saw me instantly told me I have to be admitted, again. Blahblahblah procedures not important, fast forward after checking in at NCID, I had to go through tons and tons of blood tests and biopsies to find out what exactly was wrong with me. I took a total of 54 tubes of blood and blood cultures, 1 bone marrow biopsy and 1 skin biopsy till date. It took them 8 days of exclusion tests for the diagnosis to be confirmed. Because AOSD is a disease of exclusion, meaning you have to rule out all possible viral/bacteria infections before you can conclude that it is AOSD. Good lord, that 8 days was literally living hell. I finally understood why morphine is god sent.

Daily affair.

I had random spiking fever of 39-41°C every day, along with swollen joints and muscle aches. It was so bad I couldn’t even open my mouth to eat, or swallow my saliva. Even adjusting myself on bed when I sleep was painful af. I couldn’t lift my phone, I was basically bed-ridden and needed assistance with everything. I got so depressed, I was crying so hard at one point because I started feeling so useless and hopeless. On the bright side, I LOST ALMOST 10KG HAHAHA. Okay, it was not fun not being able to do anything and feeling pain with every inch you take. That 8 days passed really fast though, because I was on so much drugs I was basically in a trance state almost 24/7. I could barely recall what happened throughout the day, but I deffo remember every inch of pain I felt throughout my body. It was not fun.

Scariest part of all these was the bone marrow biopsy. Good fucking lord, I literally felt my bone getting scraped and drilled through before my bone marrow got sucked out like tulang. On the other hand, I got to try morphine for the first time ever and had the best high of my life. It was such an odd feeling. It was a really small dose of 10mg, and lasted for just 30 minutes.

Look at this cute lil deadly mofo. How tf this tiny thing can send you to heaven, literally.

Good thing it didn't leave a traumatic impression towards bone marrow biopsy because I was so high, bad thing I could feel every single sensation that happened during the procedure, except I don't feel pain. Okay I felt pain when the senior doctor decided to request for an extra tube of bone marrow, and my surgeon went to extract it from an area without anaesthesia. I don't even wanna think about it.

Putting my tattoo to good use. Guideline for the doc to find my biopsy spot, HAHAHHAHAHAHHAHA.

My doctors initially suspected it was Lupus before my skin biopsy came back and ruled that out. I am so ever thankful really, because Lupus is so much worse than AOSD. I was eventually diagnosed AOSD, and got so fucking confused. I am STILL confused and don’t know how to feel about this condition because one-liner, you are literally so healthy, you’re sick. My body betrayed me. AOSD is basically a condition where your immune system is so active, it attacks even the good body cells. So right now my immune system is on ecstasy, partying its way outta my body. More happening than my life, man.

Day 19 of vacay at TTSH, docs have finally found meds that could control my condition and I am finally seeing the sun tomorrow. It was a lot of trial and error because the condition is so rare, and it differs from every individual. I’ve had 410mg dosage of steroids/day at one point because the fever was raging and my immune system was out of control. Steroids was the only solution to suppress my immune system, so I don't get a relapse. The doctors were trying to overload my immune system in attempt to crash it, before giving me small dosage as maintenance. Damn, that was a good high tho. I was so energetic that day, I had problem sleeping. I realized I've been professionally drugged for almost 20+ days now, hahahahaha legally high for now. The side effects though, really isn't something I would wanna prolong any longer.

So ye! Pretty much what happened for the last 3 weeks of my life. Had a short vacay at TTSH instead of Taiwan. Doctors are looking to cut my steroids intake right now, and replace it with another type of medication. (Fucking steroids making me shed like a snake) And in order for me to be discharged, my body has to adapt to the oral medication they are giving me. Which, my scumbag immune system doesn't wanna take, and thus dragged the hospitalization till this day. Every time I relapse, I get a 3 days extension, smh. Things are looking good now, docs are looking to let me go home tomorrow as long as my blood test turns out well.

It's been a long 24 days fight with this disease now, still feels like yesterday when I visited the GP thinking I have dengue. Rheumatology dept nurse came over and sat me down some time last week, and ran me through about life with AOSD and steroids, as if I am going through some kinda marriage counselling shit. It’s fucking weird. But ye, it was necessary. There were a lot to take note, like things I could eat, things I couldn’t. How is life with steroids as long term medication, and yadah. Also the precautions I have to take because of the steroids suppressing my immune system. Places I could go, places I couldn't and I have to take 6 months off work and avoid crowds until my body fully adapt to the new medication. There will be plenty of medical reviews in the upcoming months to keep my condition in check, and lots of restrictions when it comes to daily activities because my muscles are so weak right now. I'd have to do a bit of physio as well to strengthen my muscles after this whole fever episode.

Now for the big question: Is there a cure?

"There is no cure."

And I quote, literally from my docs, "Your condition is not mild."

AOSD is a lifelong disease that I'd have to live with for the rest of my life. Case to case basis, it really depends on individual. There are people who get it once, and it never comes back, there are also people who would relapse after a few years. There are also patients who have to live with it forever, with medication to control the disease. I still don't know how to feel about this whole condition, honestly. I am right now a living time bomb that may drop dead any time, but this disease really isn't deadly until it is. It is definitely going to change my life, because if I get a relapse, I'll be down for months. Literally months. It's gonna inconvenient my life so much, I honestly have no idea how am I gonna deal.

But that's okay, I won't die just yet, I'll eventually find a way and better soon enough once the medication sets.

Thank you so much for all the well wishes y'all been sending over, I really appreciate it. I was so depressed the first few days here in TTSH because I was bed bound and couldn't do anything. THEN RANDOMLY GOT DIAGNOSED WITH WEIRD DISEASE SOMEMORE. Also the fact that there is no cure, means I'll never be well again. So every time someone tells me "get well soon" I start to feel so sad for myself, LOL. But I will be better since we've finally found meds that could control this disease. And I really need a "Get out soon" more than anything else right now, hahahhahahhahahhaha.

Aite, that's all for now. Undergoing factory reset right now, I'mma walk out of this hospital with a brand new operating system installed! Hope I've answered most of the questions y'all been asking! Leave a comment if you've anymore questions you're curious about, I'll reply later on! Thanks for dropping by, ^^

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