I am more than my bladder

I am more than my bladder.  And, yes, I mean THAT kind of bladder.  I’ve not talked about this very openly, but it’s time I did.

I have interstitial cystitis.   It is a chronic bladder condition, and it stinks.  My symptoms started when I was 3.  I was diagnosed at 13.  I enjoyed a nice remission through most of high school and college then my symptoms returned with a vengeance when I was 23 and had just finished graduate school.  My biggest symptom is painful pressure.

Interstitial cystitis, IC, affects nearly 1 million Americans, 90 percent of whom are female.

For a few years, my life revolved around my bladder.  It affected what I did and didn’t do.  I count 2004 as my very worst bladder year.  I spent more time on my couch with my heating pad than anywhere else.  I remember sitting on my back patio straining to see a few glimpses of fireworks through the trees that July 4th because I wasn’t able to leave the house and go.  I remember parking at Target, getting halfway to the door and turning around to get in my car and come home because I was in too much pain to go inside.  I remember occasionally just sitting outside for a bit so I could get out of the house.  It was a difficult time to say the least.

And, yet, this week I went to see my urologist.  I know him well.  He’s a very nice man.  He’s a good doctor.  He’s helped me through many hard times.  He’s gone through one medicine after the next with me until we found a combination that worked.  I remember one appointment where he sat with his head in his hand and told me if what we tried didn’t work, he was out of ideas and would have to refer me to a doctor in a bigger city nearby.

When I saw him this week, it was my first visit to see him in 13 months.  The receptionist commented on how they hadn’t seen me in a while.  His nurse told me she liked my new hairstyle.  I know these people.  This week, I saw my urologist smile.  He was pleased that I am down to one medicine and have had a stable time with my bladder.  I was pleased.  I am pleased.

Pregnancy put me into remission, which was heavenly.  I didn’t have to worry much about diet restrictions.  I drank some low acid orange juice and didn’t pay the price.  I ate barbeque sauce and didn’t feel it later.  Breastfeeding/pumping kept the remission going slightly.  When I stopped in August, I was back on my go-to bladder medicine within a month.

I was sad about having to go back on my medicine.  I cried as I drove to the pharmacy.  But, as always, life went on.  IC is chronic.  It won’t go away.  I know that.  Even now that can be hard to grasp and deal with.  This week, though, I am grateful.  I am not tethered to my house with an aching abdomen.  I may be again one day, so I want to remember this day.  I want to remember how I feel emotionally more than anything.  I want to be able to remind myself that it is OK.  I never want to forget that I am more than my bladder.  It has, can and probably will at times define me.  I just don’t have to get stuck there.

Today I proudly state that I have IC.  IC does not have me.  I AM more than my bladder.

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