After sharing my first blog yesterday I received an overwhelming outpouring of support and love. Every time I woke up last night for the dreaded post-op pee, I would have another email, another message on facebook, another text supporting me. It was impossible to feel sorry for myself with such good feedback. I have to admit I was terrified to put all my personal business out there, but when I received messages from people I haven't spoken to in years telling me they are IC sufferers as well I knew that sharing all this was the right choice.
There is something great to be said about being part of a community that understands your struggles, whether they are medical, emotional or spiritual. As I did more research last night I kept running into the same cookie cutter descriptions about what IC is, but to my astonishment a lot of the major "support" sites would only let you be a member with a monetary donation. Anyone else insulted?! IC has already cost us so much, why should we pay to receive a newsletter, magazine, or join a forum? Yes, the money goes to research and that's wonderful, but right now I still have sticker shock from having to cover 15% of my surgery and the endless co-pays that came with the long and winding road to diagnosis. I know I haven't totally tapped the IC support system out there; after all, this is only day two for me and I am still flying high on the magic carpet ride called vicodin. So for now, I will continue to share my story while I search out all the support I know I will find.
Thank you to everyone who has shared their story and words of encouragement with me. Anyone have stories they would like to share about the long journey to diagnosis? Even if your condition isn't IC, we all know what it feels like to struggle to find out what is wrong with our health, and the toll it can take on our sanity! Thanks for reading and I look forward to learning and sharing more.
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