• Posted by Cathy
  • 01 Dec 2008

The Good: I met someone at work who also has IC. Pretty amazing to know there is someone else out there. I feel horrible that he also has it, but it’s really good to know there is someone else out there and I’m not alone. I mean I know there are a lot of other people with it, but none that I have actually known personally. It’s good to know I can call someone and he’ll understand what I’m going through.

The Bad: This thing that is coming out of my back (all these wires) is working! It is decreasing my frequency and my pain. Sounds good right? Well, the manufacturer continues to call, and we switch the wires (either left side or right) and the settings. I have found a setting that is awesome! I was down to a world record (at least for me) of 9 times a day in the bathroom and my pain level being a 3 out of 10. Sounds good right? However when we switch settings the pain I have is normally what is affected. It goes up most of the time, once in awhile it decreases the pain. So the setting switching is really having quite an effect on my pain.

The Ugly: The setting I am currently on (since 2 days ago) has increased my frequency. Only by 2 or 3 more times in the bathroom, but it’s that time when I’m reading before I go to sleep that the frequency has really been coming back. I was down to only going once after I lay down. Now I either sit in the living room for about an hour to go to the bathroom from there, or I just get up from bed. Last night I was so tired that I just broke down in tears. It’s horrible to get a little taste of what it could be like (less frequency and pain) and then just with a switch of a button it’s snatched away. I’m going to talk to the manufacturer tomorrow and see if I can just go back to the setting that worked so the last week that I will have these wires in will be a good one.

Written December 30, 2007


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