Old Grumble Guts (father) is back in the hospital, swimming in fluids. He gets too mad to talk so he's disconnected the phone in his hospital room. I'm never met anyone who resists doctor's orders as fully as he does. He's a doctor, of course. Maybe that means that doctors who are patients think they know better than the doctors who are treating them, so it's twice as hard to be a patient patient. Or maybe it's his GRANITE HEAD.
I was thinking, this morning, about granite heads. I have one, too, but it's got ear holes. Right now I'm going through yet more medical testing in my 15th year of diagnosis, because my new doctor thinks that there might be something going on other than Lupus. After the initial upset upon hearing this, I began to find the situation comical. Nobody knows nothin' fo' sho', which makes it even more interesting that they throw potentially harmful drugs at everything hoping one will work. Like throwing paint on a wall from a water cannon. Anyhoo...
Why is it that I continue to fight? And by "I", I mean most of us? Why can't I come to some acceptance of this level of illness just may be the way things will be for the rest of my days? I'm ambulatory most of the time, I push through pain and discomfort and wild vertigo when riding public transportation, I stay home with the kitty and boil like the Sahara when I'm feeling really unwell. Certainly my finances could be a lot better, but, overall, it ain't such a bad life. Except...IF YOU ARE A LIVING, BREATHING HUMAN BEING WITH MANY DESIRES TO MAKE A DIFFERENCE IN THE WORLD AND IN YOUR OWN PERSONAL LIFE. And you want to fucking walk around without feeling like regurgitating all the fucking time. Grrrr.
I realize that I think there is something wrong with being so angry about this, about fighting it so much and it is exhausting. It often isn't helpful. But I can't, or won't let go of the notion that I can get better, somehow, in the face of no evidence, no medical or alternative process hereforto attempted, consarnit, there's got to be a way!
Maybe it was reading "Camille"...a swan who wilted away so becomingly from consumption or some such...all those movies we see where brave people battle illness without sweating all over their designer sportswear--remember "Brian's Song"? I have this stoopid notion that one should suffer in silence, be a martyr to niceness. Grin and bear it. And that not being able to do that is some flaw in my character.
I met a woman at a Lupus support group once who didn't speak throughout the whole meeting. I was sitting next to her, and, after the meeting was over, we introduced ourselves and she asked me, very timidly, if she could ask me a question. "I have this rash," she began tentatively.
"Uh mmm."
"Its..."
"Yess? Don't worry. I have rashes, too."
"It's on...my bottom."
"Girrrrrrrlllllll...," I said, chuckling. "Me, too!"
She lit up like a Christmas tree. "I just don't want to talk about it with my doctor," she said, "It's too embarrassing."
And then we exchanged ailments, even talking about some things she had no idea were Lupus-related. And I realized that she could use some of my anger, my questioning, my self-advocacy that I learned from other Lupus patients. I didn't see her again, but I fervently hope I helped her as she helped me to some sort of understanding amidst the craziness.
So if you see me scratching my tushie....
