Wednesday, October 30, 2013


I know the first thing that comes to mind when we talk about getting our IC diagnosis is how it will or already has, changed our lives. What we have to give up; what we've lost because of having IC. This is a natural reaction and one we all go through. We must mourn the loss of what once was; doing things we used to do without giving it a second thought. Learning what to eat and what not to eat. What are we capable of physically and what sends us into a flare. It's a lot to take in and I know many of us feel overwhelmed by it all.

Over the 11 years since I was diagnosed, I too have spent a lot of time learning to cope with the many losses of things I loved. Having to sell my dream home and move in with my parents; not being able to ski anymore - oh how I miss that; not being able to exercise or run anymore; taking my niece to the theater every Christmas. So much that I just DID before IC that I can no longer do. It is a true challenge and for me, I spend a lot of time talking about how to learn to cope with these changes with my psychologist in therapy. That has helped me a lot and for anyone struggling or feeling stuck, I always encourage trying therapy.

But today, I want to talk about what I have GAINED by having IC! Gained, you ask? Yup! There is so much I have gained since being diagnosed I thought I would share what I feel are the things that have come to me since getting IC that would otherwise not have come into my life.
  • I have made so many new friends since getting IC and I am grateful for each and every one of them. Whether it's all my online friends that I have made or through my Support Group, I have a new group of friends that I would never have met had it not been for my IC. And the added plus is that each of you also has IC and we can talk and support each other in a way that those who do not have IC simply can't. We can laugh together about some of our situations, because if we didn't laugh, well the alternative is just not where I want to be. So all my IC friends help me find the humor in many situations and they support me and, hopefully, feel I support them!
  • Support Group! I know this seems repetitive, but getting involved with a local Support Group has led me to so many other positive things, that I will forever be grateful for my Support Group Leader, Barb, for putting that notice up in our doctor's office. I was the first one to call her and together I helped her make her dream of starting a Support Group come to fruition! Being part of that has given me so much in return, I will be forever grateful!
  • Discovering that I have the ability to help others and getting involved with the ICA as a Volunteer Patient Advocate! This has been a true blessing in my life and showed me that I was capable of being of service and gave me a reason to continue educating myself so that I could help others. Learning that I could help other IC patients has been a true gift. They always say doing something for others gives you more joy and satisfaction that you would have thought possible. It's true. I am thankful for the ICA allowing me the opportunity to work with them and talk to so many wonderful IC patients all over the country! They have given me so much in return that I will always be thankful for each person I have ever spoken with!
  • Writing this Blog. My family saw the change in me as I began my Volunteer work with my Support Group and the ICA. Heard me talking to patients and the stories I would tell about talking to others suffering and the resources and information I would share. It was their suggestion that I start writing this Blog and they encouraged me that I could do it. I would never have believed, before IC, that this was something I could do. I was nervous at first, trying to find my voice and talk about what I wanted to say. And would anyone read it or pay attention? Would I just be writing and no one would see it? But I have persevered and for all of you who follow my Blog, give me positive feedback and encouragement and tell me that you got something out of what I wrote, I am so thankful. This week was a HUGE milestone for me because one of my posts from the other day has blown away all previous posts with over 1,000 views so far, and it's still growing! I cannot say how excited this has made me and how happy I am that so many have come to my Blog and read that post. I hope many of the newcomers will stick around and continue to read my Blog and share it with their IC friends. I may never come anywhere near this many views again, but I hit a goal that I never imagined I could hit, and it made my week! THANK YOU ALL!
  • Fundraising for the ICA! As we all know, research funding is something we desperately need. I never imagined that I could become a passionate fundraiser but I have! I have managed to raise a little over $3,000 for the ICA and all without doing anything complicated or created a lot of hard work. I am so grateful for everyone who has made donations to my Fundraising Campaign It has meant so much to me that friends and family supported my efforts and made donations to my campaign! This is something that has become a regular thing for me. I write a letter that I email to all my friends and family around the time of my birthday and Christmas and I ask that they not buy me any presents, but instead make a donation to my ICA Fundraising Campaign. I also have been able to get the ICA to be part of my community's Annual Holiday Cookie Sale and raised funds that way. Because I have such wonderful neighbors who have learned about my IC through the annual cookie sale, when my Mom and I had a garage sale recently, neighbors brought things over asking us to sell them but to keep the money and donate it to the ICA! There are just so many wonderful and easy ways to help raise money for the ICA and I have been touched by so many people's generosity and kindness in helping me that it brings me to tears.
  • Raising Awareness is something that I didn't know I could either. But it is something I have become passionate about. I use Twitter (@Catwoman720) often and as a direct result of doing so, I have been contacted by several organizations asking that I share my story or submit a video. For those that may not have seen them, here are some links to some of my Awareness stories that have been published online:

  • Raising Awareness is something anyone of can do and I know others are doing it too. Thanks to Elizabeth Bingenheimer's efforts at raising Awareness, she was invited to appear on The Doctors and they recently filmed her cystoscopy with hydrodistention and will be doing a follow-up episode on IC and her story in the near future. I know others Blog, Tweet, write letters and more so let's all continue our joint efforts at raising #ICAwareness and imagine what we might accomplish!
  • The support of my family and friends has been such a blessing. I know how lucky I am to have such a great and supportive family and a very small, but close and supportive group of friends (BIC - Before IC) that have stuck by me and make accommodations to my needs so that we can still stay close and visit. You find out who your true friends are when you get sick, and for those that have gone out of their way to understand and support me, there are just no words sufficient to express how I feel about them!
It is not easy to avoid the daily struggles each of us faces in learning to live with IC and associated conditions. But if we stop, take a moment and think about it, maybe you too can find what you have GAINED by having IC!


  1. I think the most amazing thing I gained from having IC is the ability to be patient and do things beyond my comprehension. I never thought the human spirit could endure so much. Much love to you

    1. Sariah; I agree with you. That is a good one as well. I think we learn to be more patient and discover we are stronger than we ever thought we were! Hugs!