Systemic Lupus Erythematosus (SLE) in my life

I’ve read in passing (somewhere, can’t remember where though) that researching about an illness (especially if you have it and doing research on it through the internet) can be depressing.

In my own experience, it is. It is depressing and a lot of other things. It is however, for me, necessary. Sometimes, I just want to wallow in the misery of me having this. Sometimes, I would like to read information on this again for me to really understand it. Sometimes, I just want reassurance that one day this can still be in remission. At other times, I want to check if there is anything new about this (especially in finding a cure and not just control and “easing of the symptoms”).

Now, I find myself googling it again (and hirap ng spelling noh, but I was able to get it right when I was newly diagnosed after about a hundred try… hehe joke lang), and browsing all the different sites where this particular topic can be found. I am also wondering what made me do this, and why do I have to go through this again. I already know what it feels like and what it is like to live everyday knowing that you have this “thing” in you.

Is it the fact that my confidence in myself is deteriorating because of these awful (note that I am totally trying to refrain from cussing) rashes in my face, back, chest, arms, and starting a while back, legs (huhuhuhuhuhuhu hear me cry). I can’t bear to have my picture taken because as you can see from recent pictures if you’ve checked out my photos section, I am totally RED. Rashes everywhere. I’m even redder than the Red Team jersey (azeus basketball). If not red, its like actually black or something. Not only am I red, my skin is too dry too. :(( I used to love having my pictures taken, to see myself smiling at the camera, even with the imperfect teeth and all, but not anymore. Not now. Sad to admit too, I don’t know when I’ll ever get back to that time when I have no care in the world who will see my face, and who’ll check out my pics. Superficial? Maybe. But I have to admit, it is pulling me down.
Hmm. I can’t think of another reason why I would let myself google about lupus again. Maybe that’s just it. Seeing myself in pictures not worthy of posting (well, if I am in it), made me check for new information on this again, but then again, all information are the same.

I was actually better last May2008. Less rashes, and less problems. I don’t know what made this reappear in my life (in full force). I was getting worse after May. Don’t ask me how I am doing now. I don’t know. Not good would be the one I’ll bet on. What’s the reason why this is back? I really don’t know. Stress maybe? YOSI! — This I really have to quit doing (in time). Less of this (imagine the thought), but am actually starting lessen it already. Besides, it’s also the strss that makes me smoke too. or maybe all these pent up emotions and problems inside me that I do NOT share with anyone are the reasons why I am having a flare. Yeah, yeah, maybe I should start sharing… Or maybe I can start forgiving and releasing all these negative energy in my body. Or maybe I just shouldn’t fall in love. This also causes stress. hahaha. Whatever the real reason is, I really don’t know. But good to know, is that I have already started some things to be able to get back on my feet, and try to live as if I’m normal (or as close as I can get to that). Do you know, I do not go out during the day? I prefer night time. Recently, my day will start at 4PM. This is the time that I can try to bear going out. (Since I do not have work, i get to choose what time my day starts, one good thing for now). All errands are done starting 4pm.All gimiks, later than 4pm. Ironic though. I love to swim, especially sa ocean (or sea, whatever the correct term should be). But I CANNOT do that in day time! and duh! It’s dangerous to swim in open sea at night. So this means NO beaches or outings for me. But as I have mentioned before, pasaway ako. Yes yes, I do break the rules (not totally though).I still bathe in sunblock, I wear long sleeves at the beach (yes, i try to) or I have some malong or whatever to cover myself, I have a cap or an umbrella (but then this is too heavy for me :P).Oh well.

Googling it, and reading about this again, made me think. And made me more desperate to be better. They say, lupus patients can live a normal life. And unlike before, can live longer. I’m praying for this. That soon, I will see no rashes and I will not feel so tired, and I will not have these recurring super bad (migraine-like) headaches.

I know this day will come. I know that soon I’ll be better. Inside and out. There are so many things in life that can be cherished and treasured, so many things to experience, so many things to learn. I do not want to miss out on these chances just because I have lupus. Even sick people have the right to live and love and laugh. To enjoy life (within the limits) and to make memories. To work, to play. To sing and dance with joy. To be normal. In life, there were many things that happened and will still happen. And I do believe that things happen for a reason.

The reason for my being diagnosed with SLE, I do not know. Only the Father knows what is the real reason behind me getting sick when I was still in college. And though I admit that I do ask why me? sometimes, I don’t dwell on it. I just believe that God has a purpose for this, and with Him, everything would be alright. Besides, I would not be the person you know right now (I think) if I was not diagnosed.

There are a lot of us here in this world with lupus. 🙂 And there are a lot of us surviving. Living one day at a time, being thankful. Guess we just have to survive each day. 🙂 and SMILE. My life with lupus… still happening. haha.

Gotta have faith, gotta keep it. 🙂 SMILE!

Note from the author: Till next time on my ranting (for sure there will be another blog similar to this one on me and SLE). I’ll also be posting basic info on SLE (just to share especially to those who are like “huh???” and to those interested)


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