During an I.C. flare, by the dawn's early light, I can usually be found in the fetal position, silently whimpering in pain. Each morning of this past weekend, unfortunately, was no exception. Thanks to Interstitial Cystitis (I.C.) ,a bladder disease I was diagnosed with a couple of years ago, I dread the process of waking up most mornings.
We squeezed a LOT into our mini vacay. We walked and walked and walked and walked... stopping periodically for a delicious pizza slice, a scrumptiously sweet canoli (yum!), a steamy bowl of matzo ball soup, glass(es) of wine, and of course, Dunkin Donuts coffee! (How on earth does Denver NOT have a Dunkie?)
***Well most mornings, typically everywhere from my lower abdomen and lower back to my upper legs will feel like they are being stabbed with knives and razors. Sounds awesome, right? Ugh...
What's more, during a full-blown "I.C. flare," I dread doing most fun things, such as: drinking coffee or consuming anything else that contains caffeine (chocolate! soda!); eating citrus and nearly almost every other fruit; nibbling on many types of vegetables, especially tomatoes (pasta with RED sauce!); enjoying a glass of wine with dinner or having a beer or two on a weekend; having a tub of yogurt for breakfast or cooking with any sort of spice that is actually tasty; or munching on any type of cheese that is aged, such as parmesan, asiago, cheddar, etc. (Did I mention that I'm ITALIAN and that I love to cook and eat?) Oh, and how can I forget! I'm 32-years old and I'm married, so I'm no longer afraid to admit this: making love to my husband. There, I said it. It HURTS. I.C. makes it HURT. It's excruciating. And my husband is a saint. Moving on...
I opted not to blog about my I.C. in the past because I was embarrassed to admit that I have a bladder disease, in addition to ADHD, General Anxiety Disorder, and Clinical Depression. I figured, "Who on earth is going to want to read about any more of my issues?" The stigma attached to the ones I have mentioned in the past has been enough for me to handle.
However, the more I read about I.C., (and the more painful flares I go through), I realize that my "shortcomings," per se, are basically all connected and related. Especially anxiety and I.C. For example... New York was GREAT! Exciting, stimulating, emotional (ahem...ground zero! Ellis Island!), etc. Anxiety-producing? You bet. Hot, crowded, stinky, loud, difficult to manage, too. For someone who finds it tough to focus to begin with, it ended up being one exhausting trip. A trip that offered plenty of delicious meals that, coupled with the anxiety-provoking nuances of our daily excursions, really did a number on my poor bladder.
***So. Now I'm finally back home in my cozy office with my lazy dog and spunky new kitten, feeling reflective and a bit confused. Should I feel bad about all of the delicious "bladder disease trigger foods" I enjoyed in New York? Should I be angry with myself because deep down I knew that trying to pack in so many exciting activities during our New York days and nights would make me anxious, exhausted, and in need of an alcoholic beverage? Should my tail be between my legs because I enjoyed our trip to the fullest, while deep down I knew I'd be spending the next month in sometimes debilitating pain because of my choices?
I never thought that "spreading awareness" about I.C. would do much good until now, but pondering these questions has motivated me to write this post. The truth is that I was on medication (Elmiron, taken 3 times a day) for an entire year for my I.C. It didn't work. There are a few other alternatives, but they are not exactly the best options for me at this point. I realize I don't have cancer or any other life-threatening condition. I am able to go to work each day and for the most part, do what I need to do. Some I.C. patients don't have that luxury though. Some can't work because they need to urinate 60 or more times a day. And that just sounds like pure hell.
Finally, it is very well-known that the medical community does not know enough (they don't know much at ALL) about I.C. I've realized that if I can help spread awareness about this disease, then maybe it can make its way to someone in the medical community who can advocate for more research so I.C.-ers like me can have more options available to them in regard to treatment, advocacy and support.