First, think about your decor. Hospital chic is the look you're going for. Taupe walls, beds with toddler safety rails, a ridiculously high-mounted television and plenty of beeping machinery are sure to set the mood for this year's see and be seen pity party. Make sure you have the right outfit, of course. My personal favorite is soft, tie-back loungewear and don't forget, nothing feels more glamorous than going commando. Menu, you ask? Sprite and saltines, graham crackers if you're feeling fancy. The right guest list will include plenty of nurses, a family member or two and don't forget those doctors! Now, with just the right cocktail of general anesthesia and painkillers you are set to throw yourself the best pity party ever!
At least, that's how mine went.
Today I was diagnosed with interstitial cystitis. Now, if you're about to go google that shit, stop right there. And whatever you do, DON'T read the Wikipedia page! Boy will you get an eyeful of "You've got to be fucking joking." Before you can even get down to what interstitial cystitis (IC for short, because let's be real, I type like a 3rd grader and that's going to get really old, really fast) is you will see words like "debilitating", "severe", "disabling" and phrases like "quality of life resembles that of chronic cancer pain." Thanks, Wiki, because I wasn't worried enough.
IC is a disease of the bladder which causes chronic pain and a whole host of urinary troubles. From the little bit of info I've gotten from my doctors and reading material, they aren't really sure what causes it or what the pathology really is. There is no cure and it gets worse as time goes on. Awesome possum. The more I search, the more I find out how little information is out there because, similar to infertility and other deeply personal health issues, there's not a lot of dialogue happening. Even if I'm only talking to myself, I am determined to keep the conversation going. I've never been super graceful at the silent sufferer thing.
Now, let me preface this by saying, as far as I can tell, my IC is only mild to moderate at the moment, even though it will likely get worse as time goes on. I know that there are people out there who are suffering a hell of a lot more than me and in no way will I be making light of that suffering. I will, however be busting the balls of my own situation because honestly, when I read ANY of the literature out there on IC, I want to curl up in the fetal position and stuff my face with cookie dough. Finding some humor in this situation is the only way I can keep from crying right now, so that's my current treatment plan.
Now back to this fabulous pity party of mine. As everyone knows, there is always someone who shows up at your party who was not invited. For me, this morning, it was the lovely lady sitting next to me in pre-op. She must have overheard J and me talking about my doctor because she was a patient of hers as well. She asked if I had IC and I told her that today they were performing the procedure to determine whether I have it or not. She proceeded to scoot closer to me and I genuinely thought she was going to grab my hand. She said, almost with tears in her eyes, that she has had IC for 10 years and begins to tell me in great detail of her pain and suffering and that she will pray that I don't have to go through her ordeal. In most situations, when strangers start telling me about personal details of their life I am an empathetic listener and I can easily interject with "Oh my"s and "Bless your heart"s. In this moment however, I was frozen, struck by the pain in her face as she told me about the daily struggle of trying to make people understand what it means to live with IC and the chronic pain it delivers. I think my pity party started a little ahead of schedule, right then and there.
So, cut to the recovery room, where I am severely doped up. In walks my doctor with a series of pictures and the words, "It's definitely IC. We'll meet in a week to talk about treatment options." And that's it. There I am, alone, confused, listening to the nurses talk about Amish people who are using "studs" for sperm donors because they are becoming inbred (I wish I was joking). I laid there, one giant crocodile tear rolling down my cheek, trying not to start my pity party without any guests. As soon as they wheeled me into the room with J and he said, "So did she tell you?" I started bawling. I thought about the woman in pre-op who has this surgery every six months just to relieve the pain. I thought about all the things I was going to miss out on because I would be stuck in the bathroom. I thought WOE. IS. ME.
Now here is the most important part of a fantastic pity party....it has to end sometime. Right now, sure, I'm in a decent amount of discomfort and a little bit of pain, but a lot of sufferers of IC are disabled, so in comparison I'm doing cartwheels. I can wallow, stew and ruin the other parts of my life that are simply overflowing with awesome, or I can live the life I want, just to spite my bitchy bladder. It will probably get worse one day, but today is now and as major as the pity party was, it's time to move on with life. IC will just have to be a part of it.
The purpose of this blog is to vent whatever feelings I am having, good or bad, and to provide a forum for people like me. Today is the first day of my life with IC and I would love to get feedback, tips and tricks, venting and anything else from those with or without IC, urethral syndrome, prostatitis, etc. Thanks for reading!
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