Tuesday, April 15, 2008

Lupus envy

i've had people say all sorts of insulting things to me regarding my illness. "i wish had 6 weeks ot just lay in the bed and read."
if your life is so F***ed up that you wish you could have a stroke so you could lie around, then you need
to change your life, not take it out on someone who's already down! And for what it's worth, reading was very difficult for me right after the stroke. My eyes were doing all kinda weird stuff.

Some of my friends are on disability and anyone who knows this says things like "why don't you get a job like the rest of us?"
Humans are lazy. they would all love to get a "free check" in the mail for "doing nothing" just ask them if they want to pay the price to get that "free" check- a lifetime of avoiding the sun, in and out of hospitals and doctor's offices, huge medical bills, disfiguring medicines, and always waiting for the axe to fall, the kidneys to fail, the next stroke, the next weird symptom, the next tiem you can't enjoy going out because you're too tiered.

i lost a lot of weight in 2002 when i was very very sick. i had no butt and was aactually uncomfortable.
someone had the nerve to say "i wish i'd lose my appetite" What i wish i'd said? "i'll trade you 2
strokes, hair loss, and kidney failure for a fat ass!!!!"

When I first got sick, I had two people from the church I was going to at the time call me at different times. One of them informed me I was sick because I had some hidden sin in my life (and was being punished). A kinder soul informed me that I was sick because I was doing god's work and the devil was attacking me. Hmm. cant' be both now can it?
They were baffled that someone like me, who showed up to church 3 times a week, could ahve something so awful happen to them. I realized later they were saying these awful things because they wanted to somehow blame me for my illness- if somehow it was my own fault, then they could believe it wouldn't happen to them. Same stuff they do when a girl gets raped and they say she was "asking for it" because she had on a short skirt. Once I realized it was fear, not meanness, driving these people to say awful things, I could forgive them.

Other folks from the church were all pitching in to help this woman who was bedridden (pregnant, doctor's orders) and bringing her dinner every night (she had a husband. Meanwhile I was debilitated and almost no one came around.
Later, after I got back on my feet (and moved away, and left the church, which I hope I'd have had the good sense to do even if I hadn't moved away), I finally called one of the main church guys and asked them why they refused to help me when I was sick, but helped others. He said "You're still upset about that?" Of course i was- no one had acknowledged the hurt or even considered apologizing or explaining. He said "Well we figured you were doing that 'wacky' medicine." So I said "you mean you didn't approve of the medical treatment I was getting so you decided not to help me." He says "Well i wouldn't put that way." And I said "I'm sure you wouldn't!" Because that would make you despicable!

find some real-life face to face friends who aren't crazymakers, takers, blamers, haters. seek them out. They may not all be in the church... but they are out there. i found some for the first time in my life after my 2nd flare. this whole thing has been
a lesson for me in caring for myself.

love yourself and others will follow suit (or get left behind!)
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