My IC Awareness

Yesterday kicked off the beginning of Interstitial Cystitis Awareness Month.  I’ve posted about IC a few times in the past, because it’s something I’ve dealt with since I was 3.  So, you could say that I’m very aware of IC.  It has a presence in my life.  In honor of IC Awareness Month, you’ll see a few related blog posts from me this month.  Today’s is about how aware I am of IC.

Back in 2004, I was so aware of IC that I was consumed by it.  That was my absolute worst year in which I remember leaving the house meant sitting outside on the back patio.  It meant that I started into Target to pick up a few items only to turn around before I even reached the door because I was in too much pain to keep walking.

I am not in that place any more — praise God!  In fact, these days I consider myself as living a pretty normal life.  And, yet, when I really think about it, I am aware of IC every single day.  Here are some examples from this week alone (as of Thursday evening when I am writing this):

– I am aware of IC when I can’t sleep through the night without going to the bathroom.  This happens about once a night nowadays.  It’s a vast improvement from the end of grad school back in 2002 when I was up three or four times a night and nearly every night would sit up for about an hour near tears in pain.  I’ll take a once-a-night trip to the bathroom very gratefully over that.

– I am aware of IC when I take my Ditropan XL every night and then feel it’s aggravating dry mouth/dry eye/dry skin side effects.  But, it keeps me living my relatively normal life, so I will accept these side effects and counter them with things like flaxseed oil, plenty of lotion and hard candy.

– I am aware of IC when I decide to drink only water and milk in order to keep my bladder happy.  Citrus and caffeine cause my bladder to hurt.  I sometimes treat myself to a decaffeinated soda a couple of times a month, but even those have to be limited.

– I am aware of IC when I’m cleaning grapes for my child and sneak only two or three.  I know any more than that, and I risk hurting my bladder.

– I am aware of IC when I consider whether the risk of feeling bad is worth eating that egg salad sandwich for lunch.  Vinegar products (mayonnaise, mustard, barbeque sauce, ketchup and so many more things) make my bladder protest.

– I am aware of IC when I debate whether to take medicine for my cold and risk irritating my bladder or put up with a stuffy nose.  I’ve found quite a few non-medicinal remedies that help like Breathe Right strips, Vick’s vapors and warm showers.

– I am aware of IC when I go to Johnny Carino’s Italian Restaurant for an unexpected lunch date with my husband and order my pasta without sauce because something they put in their sauces makes my bladder very angry.

– I am aware of IC when I’m playing with my toddler and she accidentally kicks my bladder.  Her kicks hurt much more now than they did when I was pregnant.  I was fortunate to be in remission throughout pregnancy.  And she didn’t have nearly the leg strength that she does now.  She also wasn’t wearing pink Crocs in utero.

– I am aware of IC when I pray multiple times a week that if it’s God’s will, IC stops with me and doesn’t pass on directly or indirectly to any other generation.  I also ask for His help if it should pass on.  I tear up just thinking about my daughter, niece and nephews with the risk for this.

There may be a few other examples from this week that I can’t think of right now.  Here’s the thing: this is my awareness of IC at this point in my life when this disease is pretty darn controlled.  This is my awareness when I’m able to get out and do things, when I’m able to care for my child, do my work and take care of household chores.  I had a greater awareness in years past and in harder times.

I know there are millions of other women and some men who share this daily awareness with me to varying degrees.  And for them (and me), I raise awareness.  I proudly proclaim that I have IC, yet IC does not have me.  I am more than my bladder.  Though it can be embarrassing to talk about, it is something that very much needs to be talked about.  Too many women (and men) are suffering in silence.  Too many doctors still insist this condition is all in our heads.  Too many years are going by before a diagnosis is given (it still takes an average of seven years for a diagnosis to be made).  Too many researchers aren’t interested in this condition.  It demands awareness.  Because too many people are living with this acute awareness, this horrible pain, this often debilitating disease.  We have voices, and we must be heard.

I am aware of IC.  Please, be aware of it, too.

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