Painful And Personal Thoughts

I've always described myself as a SLUF - Short Little Ugly Female. I didn't mind being unattractive - I was clean and 'had a great personality' and could think for myself. I liked pretty and comfortable clothes and could use makeup and jewelry - but my most outstanding feature, to me, was my forceful personality.

Six years ago I developed a sore on my face, right on my L cheek. It grew into a scar and really looked bad - but I didn't worry too much about it. It was just - there. My daughter, a biologist, didn't like the looks of it and sent me to a pathologist. He said it was a lupus lesion, a classic sign of lupus. It could be removed, but it would just come back - and eventually would spread all over my face, in what they call a "butterfly" pattern - both cheeks and across my nose. More research proved that I had systemic lupus - which explained a LOT; how and why I would get massive infections, even sepsis that forced parts to be removed so I could survive, the constant urinary tract problems, and what was causing them. My own body, my own immune system, revolting against itself. The female doctor I saw wanted to put me on steroids; but I HATE steroids. They damage the bone and don't really prevent anything, including the progression - they just make whatever is happening not strike so hard or last as long. So we agreed I would just take the antibiotics when I had a flareup, to help my immune system beat whatever infection was next on the list. At least antibiotics go away after awhile, and don't damage bone and connective tissue. I also had to change my lifestyle, drink different fluids, eat different foods, change everything about my intake, avoiding certain things. It's hard, but doable - especially now, when I live where food is so much fresher and the water is so much purer.

Well, this past couple of weeks, I have watched a couple of developing 'blisters' on my nose and on my R cheek. I can't wear makeup any more, of course - the lesion doesn't like it and starts to bleed and suppurate, the scar tissue underneath refuses to hold it, and any coverups just don't work. So I have been makeup-free for about a year. These 'blisters' are the exact same way the first lesion started. True to form, the disease is progressing.

Because of how it looks, I went to my boss this week and told him that the lesions, even though they looked bad, were not contagious, not infectious, but simply a form of the disease. I felt that I had to do that - as the first person that anyone sees when they walk in the door of the school, I didn't want any parent to think that I was going to give their kids something.

This was awkward for me, because I hate whiners and complainers, and don't like to share my feelings or personal life with anyone - usually because (and I proved it last May) small-minded and vicious people use them to insult and lie about, and to try to hurt, me. But something had to be said, because I preferred the blunt open truth to whispers that build behind one's back.

I have never been a beauty, but this painful and really ugly outward development depresses me. It would be different if it was painless and didn't suppurate, but it isn't and it does, and makes me feel sore, and look as if I have a terrible contagious disease. ARRGGHH.

I'm just glad I'm not around those terrible nasty people that I was last year, who use what they perceive as others' weaknesses as a club to beat them down further, just so they can prove to themselves that they are superior. My "weakness" is my stupid body that can't keep up with me, that refuses to do everything I want it to do, that hangs off of me like a demanding child or gummint-dependent whiner, demanding attention just for existing. Here at least I am not on call 24-7, having to listen to everyone's constant complaints and whining, where I can rest this battered and weakened body, and not have to feel like I am under public scrutiny every single waking moment. Life is simple here, and is what I needed - especially as my stupid disease with its painful and miserable effects progresses.

Like my longtime friend Gina, who when I told her I had lupus, said "What scar?" - some people see what is within, ignoring what is on the outside. Unfortunately it is the common nature of the bestial-minded to stone the 'pink monkey' in their midst. Better to be upfront and rational, to forestall any such reactions - or to be prepared for them.

But it is really a nasty-looking progression... maybe if it didn't hurt so much, it wouldn't be so bad. Just another PITA to deal with... sigh. I'm just glad my friends can't see me now - their expressions of loving sympathy would be too much to bear. I don't want sympathy, I don't understand it, and I don't like it... I don't like being pitied. I like being normal. I hate being deformed - as if being short and ugly wasn't enough... arrrrrrgggggghhhhhhh.