• 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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  • Posted by Cathy
  • 01 Dec 2008

So, I did it! I had the surgery and so far I’m peeing less, I’m down to 10 times a day!! I never thought I would be so excited about peeing. I actually called my parents to tell them.

I have wires coming out of my back, a ton of bandages on my back and a HUGE battery pack! I can now take a shower with out getting my back wet. I have a trick I use…seran wrap and lots of tape! I wrap the seran wrap from the top of my torso to the bottom of my torso. It helps a lot, it takes time, but it’s better then getting zapped!

I do have less pain now. There are 4 prongs on each wire, I have 2 wires on my left side and 2 on the right. So far I’ve tried 3 different settings. The 2nd setting I had it on was the best. Less frequency (urinating), and a pain level of about a 3 out of 10!! I can’t believe it got down to a 3!! So the setting I have it on now is bringing the pain back up to a 7-8. So the middle setting has been the best. I don’t remember what it was and I don’t want to have to call the manufacturer because of the holidays! The manufacturer by the way has been awesome! He calls just about every day. He even called me on a Saturday from home. They have some wonderful people working there.

Anyway, so now I need to switch wires (from left side to right side) tomorrow or the following day. So we’ll see how it works. My nurse practitioner told me if there isn’t a drastic change in either frequency or the number of pain pills I take a day, then there will be no permenant battery put in and the wires will be taken out. So far the amount of pills I’ve been taking has been decreased except for the past 2 days. I’ve had some increased pelvic pain on this setting. Last week I had some pain in my back. The doctor says the nerves in my back are shot, so it will take longer to recover. But the pelvic pain has decreased up until the 3rd setting I was on.

So right now I’m going to continue to feel like a robot until January 3rd when we decide if I’m going to get the battery. I think it’s working and I think the battery would help me out a lot. So we’ll see what happens!

Written December 24, 2007

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  • Posted by Cathy
  • 01 Dec 2008

There was a blizzard on Sunday. My mom ended up coming and picking me up on Saturday, to make it easier to get there on Monday. Lot’s of snow but not the 2-3 feet they were calling for. God answered my prayers. We left at 4:30 in the morning so we could make it there by 6 AM. As soon as we hit the expressway the roads were clear! I thanked God the whole way to the procedure. I remember waking up once during the procedure and I was under a blanket. I remember the anesthesiologist (who kind of acted like he didn’t know what he was doing) looking at me and then I was out again. So I now have on my back about 10 feet of wire, most of it is taped up, a couple of bandaids, a gauze pad covering the exposed wire coming from my back, and a pouch with wires in it holding the spot where the battery will eventually go in 3 weeks if all of this works.

I’m supposed to be keeping track of how many times a day I pee and when. So far it’s been about every hour, excluding the 3 hour nap I took, 15 times today, and I haven’t fallen asleep yet, so the 3-4 times I go before I fall asleep haven’t been counted. So 18 times is pretty good.

I should mention the wonderful people I have in my life that have been helping me out so much. My parents, sister, and friends I have around here (who will even pump my gas because I just can’t do it yet). My sister made a huge sacrifice by leaving her kids for the first time in order to take me to and from the hospital! The nurse where I work has been great through all of this. She has agreed to change my drainage patch which is a huge help to me. The people I have in my life is what gets me through each day.

My next steps are to recover, try and start a support group, and get the word out about IC. So my prayer for tonight is Lord Thank you for helping me get to the hospital, and helping me to get to this point. Thank you for the wonderful people you have placed in my life. Please help me to recover and let this work. Guide me in my plans I have for the new year. I pray for your blessings and wisdom in what is in store for me next. Amen

Written December 18, 2007

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