I continued to see the wonderful Dr. Phillips and returned for my second urodynamics study (some girls have all the luck!) the summer of 2012, two years after my first one. There were some unexpected updates. This time I was treated to a rectal probe (yay!) as well as a real-time x-ray type scan that allowed me to watch my bladder filling up like a balloon, which was a bizarre experience. Even before the test, the nurse scanning my void diary (which included 15+ bathroom trips/day) mentioned intermittent self-catheterization as a possible solution, and, by the time all was said and done, everyone agreed that we should give it a try. Um, right now? Ack.
I cried a little and then pulled myself together and gave it a go with the amazing nurse Hazel talking me through. It was neither easy nor comfortable, but it also wasn’t as hard or painful as I’d feared. And, as horrible as self-catheterization seemed, Hazel unintentionally provided me with some good perspective while giving me instructions. “You’d be amazed how many women look at me blankly when I say ‘Put your fingers around your clitoris.'” I might have to pee through a straw but at least I know where my clit is!
That first week was awful. In addition to having to lug my new catheter samples (including some alarmingly long ones) and lubricant, I carried what is commonly referred to as a “hat” — a plastic container that sat on the toilet seat so I could measure my output and report back to Hazel, who would then help me figure out how many catheters to order. Some days I managed to catheterize maybe twice after rendering my ladybits sore from inept poking around. It is a cruel coincidence that folks with MS who have to self-catheterize also likely have hand tremors and/or poor manual dexterity. Even now I sometimes struggle, but I did eventually get the hang of it. Dr. Phillips told me the goal was to be able to sit through a whole movie, and within a month I could do just that.
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| Look I made a hat! |
P.S. Medical lubricant seems to come in two sizes — ketchup packet and large toothpaste tube. Once when I was out to dinner with my friend Donna, while getting up to go to the bathroom, a toothpaste-sized tube clearly marked LUBRICANT leapt from my purse, falling at the feet of our waiter. Donna made a noble effort to kick it out of the way, but it was too late. Lord knows what that waiter thought I was doing with that lube, but he didn’t make eye contact with me for the rest of the night.
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I, like many others, had no idea that MS included this charming little side effect. Thank God that you have boundless courage and an amazing sense of humor. I hope some meds are created soon to help cure this disease. Keep fighting, you brave woman!!
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Thank you, stranger! I'm not sure my courage is boundless, but it is great than I anticipated.
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