When I was first diagnosed with interstitial cystitis, I was overwhelmed and immediately became isolated. No one I knew understood what I was going through, and I had no way to learn more about this insanity that quickly enveloped my life with doubt and uncertainty. Then, I discovered the World Wide Web and the isolation fell away as I learned that there were others in the universe that felt like I did.
Sorting out information on the internet can be tricky; however. It became obvious that many people out there just wanted to take my money and didn't have any more answers then I did at the time. On the other hand, quality websites eventually made themselves known. Visiting the Interstitial Cystitis Association and the Interstitial Cystitis Network online became a daily task for me, connecting me with information, and in the case of the ICN, a wonderful supportive group of people. I read, I learned, I "listened" to the wisdom of veteran IC patients who had navigated the journey before me. I could research different treatments, and be assured that the doctor I was going to was a very well respected physician in the IC community. I also got my first taste of the IC diet.
Most important, when my bladder was flip flopping at 3 am, I could log on to the ICN online support group and find someone there who would answer my questions or simply give me a cyber hug. It was amazing to me that those "hugs" made a difference. It didn't take long for me to realize I had some real friends out there in the universe. To this day I recall the friendship and kindness shown to me by Jill, Donna, Diane, Lesa, and my dear friend Yvette.
As a reminder, that was in 1998. Wow, over 13 years ago! Do you remember when you first got "online?" Did you have to wait 4 to 5 minutes for a Web page to load like I did? Did you count your minutes on AOL so that you didn't go over budget? Thank God it isn't like that for most people with IC today. Unfortunately, along with the good, there are many more websites and "resources" that a person has to wade through. What is good information? What is bad? How can you tell the difference?
Author, Speaker, Patient Advocate
For step by step guidance for creating your own personal interstitial cystitis meal plan, see: Confident Choices®: Customizing the Interstitial Cystitis Diet.
For some basic, family-style, IC bladder-friendly recipes, see: Confident Choices®: A Cookbook for Interstitial Cystitis and Overactive Bladder
For health care workers: Interstitial Cystitis: A Guide for Nutrition Educators
**Please SHARE using the links below!**