they pay to kiss your feet

since there's no one else around, we let our hair grow long and forget all we used to know. then our skin gets thicker from living out in the snow.

Friday, March 14, 2008

about which i learned some things.

when i got there, the door was locked. and it was dusk and cold and a not-so-safe part of town. maybe the locked door was a sign that i should turn around, get in my car, turn on my heat and drive home. to the comfort of my couch and the safety of being alone. so, i sat on damp stairs for a while - thinking that maybe if i sat long enough, the time would just pass and the door would remain locked and i would have missed my first support group meeting by no fault of my own. and as i sat, looking over my journal dedicated to "figuring it out," a woman in scrubs opened the door.

i walked toward the unfamiliar auditorium with angst. the voices inside sounded old - much older than 28-year-old me. i signed in, took a seat and realized that i was young enough to be the grand-daughter, maybe even great grand-daughter, of everyone else in the room.

age didn't bind us together. nor did social or economic status. we were all there because we have IC. spouses were there, too. and a nurse practitioner. and i spent the next two and a half hours learning that i may need to go to another doctor. that the one i see isn't as compassionate or as cutting-edge as this other one. this doctor who is highly regarded in the IC community. this loved doctor that does research and is on the cutting edge of figuring out ways to treat this chronic disease for which there is no cure.

i took copious amounts of notes in my "figuring it out" journal. notes about treatment options and side effects. notes questioning my diagnoses and my doctor. notes pointing toward my pain and my discomfort. and a note as a reminder that patients with IC have to be their own advocate. and that if we rally together to lobby behind this disease - to bring it to light politically and socially, maybe, just maybe, more doctors will learn about it, more researchers will study it and the government will start to realize the importance of approving medication and treatments for this debilitating condition that strikes severely and suddenly in more people than they'd like to believe.

i walked out with a man who was in his 90s. he's had IC for 50 years. he doesn't have pain though - and feels lucky. "you women who have to deal with pain, i just can't even imagine that on top of all of the other symptoms," he said as we walked across 39th street. he just started wearing adult diapers. and though bladder removal is sometimes thought of as the last option for very severe cases of IC, he's determined to keep his. and so are we all.


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