I am an IC thriver

September kicks off Interstitial Cystitis Awareness Month.  In a nutshell, IC is a painful, chronic bladder condition.  It’s one I’ve dealt with since I was 3, though my diagnosis didn’t happen until I was 13.  I’ve learned a lot about IC in my lifetime.  I’ve been frustrated by it, I’ve cried over it, I’ve prayed for it to be taken away and I’ve longed for a cure or, at the very least, effective treatments.

I can rattle off a list of facts about IC a mile long.  I’ve interviewed leading IC researchers for articles.  As a journalist, I’ve attended urology meetings discussing the latest research.  I can tell you startling things like how one study found the pain and quality of life of severe IC patients is comparable to people with end stage renal failure.  I can tell you other facts like how food and beverages (even soaps and fabrics) can irritate an IC bladder and make it worse. However, what I most want to tell you today is the good side of IC.  I’ve been working to find this side.  I still work to find the positives almost daily.  Not much feels positive about dealing with IC, but the fact remains that I have some good things in my life because I live with this disease.

1. Some people call themselves IC survivors.  I am not a fan of that term because a survivor is someone who has gotten through something, not someone who is still in the trenches with their enemy.  I call myself an IC thriver.  I have learned to live and thrive despite my bladder.  I have more confidence in myself because I know my ability to survive and thrive in the midst of adversity.

2. I have a high pain tolerance.  And along with that, I know how I handle pain.  This information really came in handy when I was developing my birth plan with both kids.  I know that when I don’t feel well, I don’t want to talk and I don’t want too many people around.  This trait has also come in handy other times when I endure something physically challenging.  Pain is a part of life.  I have a good handle on how I manage with it.

Image from icawareness.org

3. I know a lot of awesome people.  I can’t count the number of people I know because of IC.  I’ve met a lot of folks through the years both in person and online.  There is something that binds you together when you’re fighting the same beast.  Even though we come from different walks of life and may have different symptoms sometimes, different dietary triggers or different treatment plans, we’re all teammates in the same game.  I’ve been blessed by my fellow ICers many times.

4. I know my dietary triggers.  That doesn’t sound super positive, but it is.  While I would sometimes love to forget about avoiding citrus, caffeine and vinegar (do you know how many places that stuff can be hidden?!), I also am glad to know what bothers me so that I can avoid it.

5. I’ve gotten to know compassionate doctors.  I’ve not always had compassionate urologists.  I had some with rough bedside manners when I was 13.  Fortunately, my parents worked to find me better help.  Since then I’ve been blessed to find doctors and medical staff who have been caring and compassionate.  In attending urology meetings and listening to the leading IC researchers talk about how hard they are working to find better diagnostic and treatment options for us patients makes me want to hug them.  Seriously.  Their devotion to IC makes me grateful.

6. I’ve learned to appreciate the small things, like going to the grocery store.  I’ve had times where going to the grocery store just wasn’t an option.  I remember a day about 10 years ago, before I had children and my symptoms were at their all-time worst when I stopped by Target to pick up a few things.  I didn’t even get inside the door before I turned around and went back to my car to head home.  I just couldn’t be on my feet that long because I felt so bad.  I still have days that I have to sit more than stand, but I sure do appreciate the times that I can do regular things like grocery shop.

7. I’ve developed more compassion.  I feel like I’ve always been a pretty compassionate person.  I’m a sensitive person who picks up on others’ feelings many times.  Having dealt with chronic pain, I feel so much more compassion for people dealing with health issues.  I know the challenges and struggles that come with not feeling well, being stuck at home and working to find hope and joy in the midst of pain.

8. My faith has grown.  I’ve loved God from an early age.  In church-speak, I was saved when I was 10.  God and I have always been close, but I have continued to draw closer to Him through dealing with my pain.  I firmly believe that God could heal my bladder.  And maybe one day He will, but I don’t think that’s His will.  I thank Him that His strength is made perfect in my weakness.  I pray that through my struggle He can be glorified.  Please don’t think I say these things flippantly.  I don’t.  I have wrestled with God about this many times. It has taken me years to get to this place that I can feel any sort of thankfulness for IC.

9. I have gotten more time to just sit and play with my children.  When I feel at my best, sometimes I can get busy running our household and doing the things that need done.  That’s not a bad thing.  We definitely need our clothes washed, house cleaned, food prepared and errands run.  I still do all of those things, but I have learned that I need to not push myself too hard or I will pay the price.  I have learned that sometimes I can just sit. And so I do.  I sit on the floor and read books, play cars, play dolls, build towers and whatever my children want to do.  At 19 months and almost 5, they are already growing too fast.  IC reminds me to slow down sometimes and just enjoy them.

10. I have had professional opportunities I wouldn’t have otherwise.  I write regularly for IC Optimist magazine, the publication of the IC Network.  While I enjoy having the opportunity to get paid to research and write about something of personal interest to me, what I most enjoy is the chance to help other patients.  I feel honored and thankful to get to put together articles about issues patients are facing and dealing with and need help with.  I feel blessed to in some very small way let other ICers know they aren’t alone and there are doctors doing research trying to help us and there are other patients out there going through the same struggles.

IC is a part of my life.  I am aware of it every single day to some extent.  Lately I’ve been aware of it even more as my bladder has been kicking and screaming at me.  And I’ve been motivated now more than ever to find the best treatment options for me.  I have two little ones who need their mama to feel as well as she can to take care of them the best she can.  I have spent quite a few years not talking about my personal struggles with IC very openly.  I feel like I’m over that phase.  IC is a part of my life.  It’s not the best part of my life, but it is there.  And I will not be defeated by it.  I will not go down in this battle.  I will continue to find ways to live my life and thrive in spite of my bladder.  I am an IC thriver.

For more information about interstitial cystitis, including how to make donations to help forward IC education and research, please visit www.icawareness.org.

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