Just something I wrote back in September 2010. Found it on the drafts and dont know if Ive ever posted this before. This was my view of SLE three months or so after I was diagnosed. Will write comments on a different post.
Unofficially three months on medication, so here's a take two on my stress-induced medical life. This is a take two because the last time i wrote, it was all a blur in my head.
It started back during my college years when i occasionally felt a tingling or pain in my legs. I would associate it with classrooms being airconditioned to unbearable temperature so i thought it was just that, right? I saw myself as a healthy and active person, actually. Compared to most people my age, i was spending my time outdoors, or going to the province (where the beach and the sun loves me) and was always game for any kind of sport.
What was unusual though was that I sleep an awful lot after an activity (which i categorized as narcolepsy, then i am wrong i think). I will sleep for at least 12 hours sometimes reaching 48 hours. I will sleep in all places possible I get my head down. Or I was always low in energy. For some reason i don't know, I just thought that it was just me. My personality, laid back and chill.
So after a prologue. Last April, after an outing with some friends, I noticed how that pain in my legs never started to heal as it should. It would usually only take a day and it will be fine but after that time, I wasn't able to walk properly at all. For a week. This isn't normal anymore. I was also having high fever during night time, extreme abdominal pain, headaches, heart pains and my body was aching all over. I couldn't write even. I thought i was dying (because i was giving up on life back then, emotional stress is a deadly trigger!) We were going back and forth to different doctors that can't pinpoint what my problem is. I thought i probably just need a psychiatrist because every test says I'm alright, so i don't get what's wrong.
Then several lumps on my neck. Had it checked and operated to test for cancer, turned out negative. But after that, things got worse,, hypersensitivity issues. I cried for weeks because i felt like being burned alive, added to the fact that my grandpa was sick the same time as I am.. so for family priorities, he has to be confined and I was to stay home and take care of myself.
So it wasn't cancer but they are still there and won't go away. My brain was collapsing. I couldn't think straight. I was hallucinating about creation and the theory of relativity and quantum physics. Mandalas. Genesis. taxonomy. I was going nuts! I can't draw a proper human figure, what more, a proper circle. After another test (Anti-DSDNA) i got a major bingo! It turned out positive and I was assessed with systemic lupus erythematosus. Something rare and unusual. Lupus what? An auto-immune disease which i roughly translate as something as the self attacking itself. I was my own enemy, very appropriate!
Feeling much better now. After losing 20 pounds in a month, I gained it all back in a week. I feel like I do not own my face anymore, or my hair, or my body because it's very different from my original perception of it. Like my "essence" was completely stolen from me. Hey, maybe i really need a clean slate. Everything new. So now, im not allowed to have a real job yet, or go out in the sun forever (which i stubbornly disobey just to test myself if i can) or tire myself or be stressed physically and emotionally (because i can't take any of that literally) I wonder what's going to happen next.
I'm turning 22 in a matter of weeks. This should be a meaningful year. I need some positive reassessment of where I've gone and where I'm heading. I hate being stuck in one place it seems, so where do i go from here if the things I've known myself for is something I can't be anymore? Hmm... one thing i know for sure. I thank the people who supported me through all of this. It showed me which people are worth fighting for, who are the people that really matter. And that is enough motivation. To do things beyond yourself, still. So fight! Fight! And win :)