i rarely mention my illness because it was/is particular to me - it was a rare illness, so why tell the story - no one will benefit from hearing about it. in fact, it will probably bore readers. plus it is a real downer to talk about illnesses. but my friend made me see that he would benefit because, although he does not have the same disease, he does have a debilitating one and wanted to know how to cope. how. to. cope. this is a good question....
so, the story is.....
i nearly died of acute kidney failure in 2003. i am OK now -my kidneys are stable, functioning at 30% which is enough for me. i hardly think about it now.
but what happened? i hardly know, see, i had been working non stop for about 3 hours on my artwork one day, when i looked up and could not see clearly. everything was fuzzy. i had the light bulbs changed in my studio, but realized that was not the problem. so, i went to the optomistist - she examined deep in my eyes and found i had uveitis - inflammation of my irises...which meant, she explained, that i had some sort of overall body inflammation, signaling something like an autoimmune disorder.
and so it was an autoimmune disorder - my body suddenly an without warning attacked my perfectly good kidneys and rejected them. also, my eyes were attacked and my intestines were inflamed to boot. i had been feeling fine - well, sort of, i was feeling tired, run down and a bit stressed..., also i was not very hungry and began to lose weight (i liked that part) but it turned out i was anorexic - not so good. the problem worsened because i was not diagnosed immediately. there was trouble identifying what was ailing me. finally a topnotch nephrologist at scripps in la jolla figured it out. the disease was called TINU (tubular interstitial nephritis and uveitus) meaning- inflammation of the back of my eyes and kidneys - which meant - my body was killing itself - identifying my eyes and kidneys (and intestines) as alien or foreign bodies and thus it needed to destroy them---- and rapidly went to work doing just that.
medical book wise - only 12 adults in the world have ever had such a problem! or i should say only 12 had been recorded.
fortunately for me, my nephrologist had remembered such a case he had seen once in an emergency room or somewhere and was able to diagnose it in time to save me. (he was vague about how he knew actually). i was not a candidate for kidney replacement since my own good kidneys were being attacked - transplants would never survive....(but deep, deep thanks to daughter brooke and brother danny for offering) . i underwent 2 years of chemo - lots of prednisone 60 mil a day i think and the anti-organ rejection medicine called cydpro (?sp). i did not, could not have dialysis because my situation was too dire. instead, the prednisone began to work and stopped my body from attacking itself and started to allow some swelling to recede so that my kidneys could begin to function again.
god, i was so sick. i could not move my head from the pillow. my days were morphed into a different dimension - i viewed the word through tiny slits of eyes - i would blink and there would be my daughter (9 years old then) talking before her daddy took her to school, then blink and she was gone, blink she was back but it was bedtime......days, weeks - then months passed. the dog stayed by my side at all times. he knew. i really love my dog for that.
prednisone has some horrific side effects. one is-- it deforms you - giving you a moonface and swollen back and arms, weakens your thighs since it feeds off your large muscles. plus, it makes you crazy. for me, it had the queerest side effect -it compelled me to clean the house!!! that was totally uncharacteristic of me, as everyone knows. when i started to feel better, i would try to buzz around with the vacuum cleaner - ah, but mostly my strength failed me and the house stayed a wreck.
so how did i cope? well, i didn't have to cope, i was too sick to know i was sick. but when i began to feel better, i cried and fought and was angry for my body failing me. i freaked out a lot. since i never felt it coming and it hit so fast -for years i was on edge worried that any little sign could mean death. i remained on constant vigil with my body.
then i went through a long period of feeling embarrassed that my body failed me. i could not speak of it.
and finally, like all struggles in my life, i began to try to forget about it. buried it, so i rarely talk about it. this is not good either - it wreaks havoc on my memory. (glad neither of my parents were alive to witness this). not exactly great coping guidelines for my facebook friend, i'm afraid.
so, i try to acknowledge it - it is part of my physical history. this brings us up to date. so there you have it - my story of my rare disorder.....if you ever wondered why my output of art seems to be at a maniacal rate, it's because i have been too close to the other side - i feel i was giving a second chance do fulfill my passion and that life is short - all those cliches.
and personally, i blame it all on peri -menopause - that stuff is shit.
*** this painting was creating about 2 years after my trauma - this painting is about mankind -small, but many as in fish roe and my deceased dad (many of him) raising up on the left side like hooked fish and above middle is my mom as the lure to the "other side". it is entitled "fisher of men".
Happy Father's Day, Daddy. oxoxoox, forever.
as for rosie's dad - i hope he will share his gifts of chocolate and aged whisky with me.