Graduating with Scleroderma part 1

 Hello!! Long time no update about my life with Scleroderma (aka Systemic sclerosis, SSc.) y'all. This time I wanna share about my degree life as someone with SSc. 

Alhamdulillah, I've completed my B. Sc. (Hons.) Biology in USM on time, which was on October 2021, as per 4-year degree programme. However, the convocation was only be able to be held this year due to Covid situation. So, yeayyy!! I was able to wear my graduation robe and walk on the stage last May. It was coincidental with my birth month & eid month. So, lots of things happened in the span of that one month. 

Having this disease was not easy especially for me and for those around me; my family & my close friends. There were a lot of unfortunate incidents, blood, sweat, tears, self-deprecating, mental health crisis, etc. But, I was able to overcome those with the helps and encouragement from people around me. 

For those who didn't know, I was diagnosed with SSc. in my 1st year of degree. It was quiet devastating at first since we never heard about it. But, as the time goes by, everything felt somewhat tolerable despite a few hiccups from time to time. I'm grateful enough that I was diagnosed earlier (about a year later after symptoms appeared). And due to me being in Malaysia, a tropical country, the progress of my symptoms were slower compared to others in 4-season countries especially in terms of sclerodactyly. It was not completely uninterrupted since the tightening still occured but at a much slower & under controlled. Raynauds still persist until today. However, calcinosis was long gone after I stopped taking calcium supplement. The scars left by the calcinosis still visible on the tip of my fingers. Telanglectasias are all over my body. Some doctors said it was not that but rather side effect of prednisone. I don't really know which to believe. GERD is getting worse especially at night, sometimes I'm gassy and bloated all day, sometimes I don't. That is the update of my current condition. 

Now, let's talk about my degree journey. I think I wanna share unforgettable experiences during my 4 years as a university student. Having SSc. have impacted a lot of daily life activities especially mobility issue. Going back & forth from classes to hostel were challenging when my hostel was located on the hill, while the lecture was located about 2 km away, with lots of stairs & reclining road. When I was feeling better, I walk a little to the bus stop & rode the bus to class. If I was having a not-so-good day, I would took Grab/Uber. 

Speaking of bus, I had an unfortunate incident while riding the bus one day in my 3rd year of university. On that particular day, me & my friends went to Queensbay Mall for an outing after class ended. We took the free CAT bus to commute there. On the way back, after few minutes of waiting, the CAT bus arrived. There were quiet lots of people also awaiting for the bus. Everybody were fighting to get on the bus first to grab a seat but I stayed a far bit behind. When almost everyone boarded the bus, I crept my way up to the bus. I climbed onto the bus with my right leg first. It struck me the moment I tried to push my body up to stand that my leg gave out on me at the bus' door. WTH. The bus was going to move at any time. I dragged both of my feet into the bus and kneeled by the door finding for support. Luckily I was not alone. My friends tried to pull me up at first but it was a failed attempt. They helped me to grab my bag & other things from me. After several tries of trying to stand up by the door, I was devastated. A lot of people also look at me. I was really embarrassed but what could I do. After few minutes, an elderly woman (around 50 yo) stood up from her seat. I made my way slowly while knee-walking to the empty seat. I then prompted myself up the seat feeling really grateful for the aunt. 

When we arrived at my hostel, my friend, Mimi, accompanied me back to my room. Not gonna lie, I felt that my leg would gave up on me anytime after I disembarked the bus. The journey to my room was challenging in that condition since I must climbed up a flight of stairs. But, I managed to endure it until I arrived at my room. Once I saw the bed, I collapsed on it immediately not having any energy left to remove my socks or anything. That was a really bad day for me. I uploaded an IG story about that incident hoping that the older members of my family were not alerted especially my late grandmother since she was not well. However, she later found out about it from my aunt and cried a little (according to my aunt). Later that night, I was lectured by her through phone calls and was given a warning of not going anywhere without any accompany. Since that day, I have trouble with busses and would think thoroughly before I rode one up to this day.