Articles about new bladder drug trials, doctors working in stem cell therapy and cutting-edge bladder replacement therapy now seem to leap out at me from medical journals. Or perhaps it is because my subconscious mind is finely tuned to the world of IC, intimately understanding the searing pain of IC that rip your life and the world out from underneath your feet in an instant, that any news of finding a cure, better diagnosis and treatment protocols makes my mind's wheels spin in hopeful yearning for the millions still suffering from IC and related conditions. Conversely, because IC is such a part of me and I am slowly becoming part of the world of IC, it still shocks me to discover women who have never heard of the disease.
When I meet people who slowly begin to put together the dots between how I eat and drink only water, coffee and tea, and I very careful about my skin and body care that they, just as slowly, begin to ask me questions. Instead of feeling as if IC is 'old hat' I sometimes feel as if I am newly diagnosed, almost childlike, when I slowly and carefully try to explain a disease that causes pain in deeply intimate places of the body. I am always grateful of the questions about diet, pain and how IC affects my life, but still weigh internally how much information is too much information to share in, say, the workplace? Am I creating an HR nightmare by explaining that IC can cause painful sex and a condition called vulvodynia which can cause pain and inflammation of the vulvar region for women? Usually I skirt around the issue saying IC causes severe pain in the bladder and other intimate places. I sometimes feel myself blushing or my eyes getting large trying to explain, without explaining that there is so much more to the suffering of IC patients than I can readily convey in a brief conversation.
When I encounter people who have never heard of IC I am reminded that our work to spread awareness and therefore draw an interest in funding support and research for foundations such as the ICA is still an endeavor that needs attention. So as I look in the rear view of my life I still see IC and its letters spell out to me that people with IC are numbered in quantities larger than first appear and that they are a constantly reminder as I move forward that is still important to look back and be reminded that there is still much work to be done in the world of IC. I can change out the soundtrack of my life but the world of IC will always be a part of me.