Tuesday, November 5, 2013


Therapy session today with my psychologist. Had a lot to talk about as usual. I think most IC patients could use up a one hour therapy session and wonder where that hour went. Happens to me every time!

An interesting topic came up in our session today. We had been talking about how long I have had IC and how long after that I began therapy. I was diagnosed with IC 11 years ago this month and began therapy 7 years ago thanks to a referral from my IC doctor.

My Mom has always taught me to be an educated patient, but I had never really needed to put it into practice much. Mom is a retired registered nurse and has always been the "go to" person when trying to figure out if whatever complaint I had warranted a visit to the doctor. If Mom said go to the doctor, well then that's what I did!

I was aware but not fully aware, of how much I was going to the bathroom 11 years ago. I just figured I was drinking too much Diet Coke, plus I was going through peri-menopause and knew that an increase in trips to the bathroom happened around then. So I was just putting it in the back of my mind. Until a family vacation. It was car trip from Illinois to Vail, Colorado. On the first day out, there was a long stretch where there was no place to pull off to use a bathroom. In the past, I could hold it and make it to wherever the next rest stop was. Yeah, I'd hurry in to the bathroom, but it was "normal" discomfort. This time, when we finally stopped, I was near tears. I was in so much pain that when I started to get out of the car, I cold barely stand. It burned when I urinated and my bladder hurt so much! Even with that much pain, I just figured that's what you get for drinking that Diet Coke in the car knowing we would have a long stretch without access to restrooms.

Toward the end of the trip I didn't even ask my Mom about all these visits to the bathroom. She came to me and said, this isn't normal - go to the doctor! It was then I really woke up and realized this was a problem and I needed to go see a doctor. 

Cut to my first appointment with my new Urogynecologist back in November 2002. He diagnosed me on that first appointment with Interstitial Cystitis. What? What's that? Thus began the long 11 year journey from ignorant patient to educated patient advocate and all the way to this Blog, fundraising and more. I am blessed with a wonderful doctor. He spends as much time as I need, even after all these years, to answer every single question I have. He has never rushed me through an appointment and most important, has never, ever, given up on me when I believe many other doctors would have. I credit his caring, concern, kindness and willingness to help me understand my medical situation for educating me about IC. 

Don't misunderstand, I did plenty of research on my own. I was always like that, but as my struggle with IC, treatments that we tried and failed, went on I became an avid researcher so that I could understand what was happening to me and what to ask my doctor about during our appointments.

So back to the topic that we discussed during my therapy session today. I realized that, now, having gone through this 11 year IC journey that went from bad to worse for me, that I am glad I did not know then what I know now.

If you follow my Blog, you know I am a huge advocate of becoming an educated patient and I still believe that. Learning all I could as I went through this process was an important part of my care. I always asked - and still do - tons of questions. Bring in information to ask my doctor about, and take notes. 

But, what I'm glad I didn't know back then was what this journey would entail. What I would end up going through. How many surgeries I would have. That I would have to sell my home and eventually end up on disability. I'm glad I didn't know this is where I would be 11 years later.

I realized that while I am a bit of a control freak; HATE waiting around for answers and test results etc. I am glad I didn't know how difficult a journey this would be. It has been a journey for me. One that has taught me so much. Taught me to be my own best advocate. To become as educated about my health as possible. To ask questions and speak up for myself. 

But that's different than knowing what the road ahead would be like. And I'm glad I didn't know it would be as bumpy and winding as it has been. I'm OK with that. I said to my therapist today, what good would it have done me to know in advance that this is where I would end up? I don't think it would have helped and might have made the journey harder.

Of course it's all hypothetical because we don't have a crystal ball and none of us can know what lies ahead in our personal IC journeys. So it's really a moot point. But I really felt my journey has been an interesting, albeit a difficult one.

Going from what I now consider total ignorance to what I am told by all my doctors is an extremely educated, self aware, informed patient has been a process. I may not have wished for this to be where my journey has taken me, but the journey is not over yet. Who knows where it will end. It will be whatever it is. I don't need to know today what tomorrow will bring anymore. One day at a time and never giving up; that's my journey now. I'll never stop learning and asking questions about my treatment and care. But I don't spend a lot of energy on two issues: why did this happen and what's going to happen tomorrow?

The journey continues!

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