• Posted by Cathy
  • 11 Jan 2009

I have a doctor’s appointment tomorrow. I’m going to talk to them about some of these meds.  My current meds (if I haven’t listed them before) are:

Methadone-5mgs -2 2x’s daily 4 at hs (hour sleep)-taken for pain    Oxcarbazepine -300mgs-1 3x’s daily -anti-seizure for IC cocktail   Cimetidine-300mgs-1 at hs -h2 receptor (tagamet)- for IC   Nortriptyline- 25mg -2 at hs- anti-depressant for IC cocktail Prazosin– 1mg-1 at hs-alpha block for IC  Carisoprodol (soma)- 350mg-1 3x’s daily-taken for pain  Hydrocodone-7.5/500mg-2 every 6 hrs.-taken for pain

So except for the soma all are pretty old med’s I’ve been on for a LONG time.

But I need to get something different. I’m having problems with sleeping now. I wake up every hour or 2 in pain and need to move. Unfortunately because of the bag I can only sleep on my back or my side. I’m a stomach sleeper. I would LOVE to sleep on my stomach again and get a good nights sleep!      So I’m going to talk about pills for relief and something to sleep! I’d do anything for a good nights sleep right now. Thank God for old reruns on TV, at least there’s always something good on!

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  • Posted by Cathy
  • 04 Dec 2008

This recovery process is taking a lot more time than I had hoped. I have finally found a program that is working, but it has been 3 weeks now and I can’t do things like I could. Carrying and lifting things is becoming a huge struggle. I thought I was going to be able to go back to leading a semi-normal life. However, I feel helpless. I have to ask people at work to carry things up the stairs for me and I can’t even carry my own laundry basket up and down the stairs. My pain was so bad today I had to call my mom to come out and help me do it. This feeling of dependency on people is making me crazy. I like to be independent and do things on my own. This whole condition has changed my life so much. I don’t think I would recognize the old me, but I would like to health wise be back to that some days. My mom tells me I’ve been so strong through all of this, but I don’t feel like it. I feel helpless, vulnerable and just plain weak. Some days I don’t even move from my couch unless I’m getting something to eat or drink, or to go to the bathroom. The manufacturer told me that the continuous cycle would cause more fatigue. But I never knew it would be this bad! I hate driving home from work because I’m so exhausted I pray I make it home with out getting into a car accident. I think something might be wrong with the battery. I have been feeling pains all day at the incision site and where the wires stop. In between that is just pain. I tried turning the battery up and down all day to see what will feel the best. When it turns up higher, it hurts in my tailbone. But I don’t know what is causing the pain. It could be the extra work on Saturday and some food I ate. Guess I’ll find out pretty soon.

 

Written January 29, 2008

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  • Posted by Cathy
  • 04 Dec 2008

I am finished with all of my surgeries for now. The 7th was the worst day!

When I went into the doctor’s we decided we were going to keep the system and put in a battery. So after we decided yes, the nurse practitioner started looking for my surgery time (already scheduled because I would either be getting a battery or having everything removed), she couldn’t find my name. So she called and found out I was on a wait list which I had never been told about when they changed my surgery date (again) to the 7th. So I called on Friday(like I was told to do to find out my surgery time) and was told they would talk with my doctor and they would call me either Friday night or Saturday morning. So by 2:00 Saturday afternoon, I had talked to about 7 people and I finally got “Sorry but the anesthesiologist make the decision and they would call me Monday!!” So….on Monday I know they start surgeries around 6Am. So I gave them until about 8:30, I called at 8:30 then 11:30 and then again at 1:30. I got answers of “Sorry no time yet,” “he’s only got 2 or 3 surgeries yet, so you’ll be in soon,” and my all time favorite “he went on vacation, got in late and waited to call you,” so they put me on hold and came back with “you should just reschedule because you won’t get in until midnight tonight.” Needless to say I was very upset, I had already had this thing in for an extra week. So I was crying, I was upset about the call, I didn’t want these wires anymore, and I’ve had terrible insomnia since Thursday, I was chewing Tums like there was no tomorrow and was in extreme pain from the stress of the situation. So my step dad told me to get ready and we left to go to the hospital. Within a half hour of being at the hospital they took me in and at least got an IV started since I hadn’t eaten anything since midnight the night before and it was about 4 in the afternoon. So while I was waiting for the IV my nurse practitioner came in, then my doctor, then they finally put in an IV. I got a run around about why this was all happening (the excuses were crazy, OH my doctor wasn’t on a vacation, he was at a seminar about IC). So I met the manufacturer while my parents were there, and it was nice, he had been so helpful already and done so much for me. Next thing I knew they were taking me to pre-anesthesia. I was originally told I was going to stay the night because I wasn’t going to be operated on until late. So by 7pm I was in the OR and was going home at 9PM. I was taught how to use my remote control and antenna. The first setting was going for 16 seconds then stopping for 8, then going for 16 and stopping for 8 and so on. I started going to the bathroom quite a bit on that setting. So I changed it, I’ll keep it on the new setting for a few days and see what happens. My doctor said something to me before my surgery which I found very interesting. He told me that the research for treatment of IC can be done, however what they really need to know is what causes it. So, I’m going to try in anyway to help. Hopefully we’ll see a cure soon!

Written January 13, 2008

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  • Posted by Cathy
  • 04 Dec 2008

I am having some insomnia issues. The pills that normally knock me out aren’t doing that anymore. I think something is going wrong with my stomach. I’ve had sour stomach for about 3 days now. I don’t know what could be causing it. I could be stress, seeing as how I have to go in on Thursday and convince the doctor that I need to have the permanent battery put in, or it could be that taking all of these pain pills with no food for so long is finally catching up to me, or the wires hanging out of my back, or the incisions are having some sort of effect on me (I don’t think so though). I have no idea. One more week of this and then I get to take a real shower. No more having to Seran wrap and tape myself up, all the while worrying about getting the wires wet and getting zapped! I have switched the settings back to what it was before, when it was working so well for me. The manufacturer told me it was just the opposite of what I had it on. As soon as I switched it my frequency went down. I went from going about every 1-2 hours to waiting 4 hours before I went. So this is quite an improvement. I’m wondering if the wires inside of me have anything to do with my stomach. I just turned up my battery pack and I could feel my stomach doing flip-flops. Maybe that has something to do with it. I don’t know!

Written December 31 2007

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  • 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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  • Posted by Cathy
  • 30 Nov 2008

Three more days until my surgery. My second surgery will be in 3 weeks instead of 2 because my doctor will be on vacation. So after having one or both of the surgeries changed on my 6 times now, I have a few more obstacles ahead of me. #1-The Weather-We are supposed to get a snow storm (wonderful Western NY weather) which will be bringing 1-2 feet of snow in on Saturday which will last until Sunday afternoon, hopefully not going into Sunday night, and early Monday morning (as I have to be there at 6AM!!). #2- I have a cold. They heard wheezing at my pre-op visit and they don’t want me coughing through out the surgery. #3- The time-My sister and I have it all straightened it out as long as the blizzard is gone by then, she’ll be able to take me.

Lord- Please let this surgery happen on Monday. The pain is getting worse and I need some relief. Please let this surgery give me some relief. Amen

Written December 14, 2007

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  • Posted by Cathy
  • 30 Nov 2008

My surgery dates got changed again!!!! This is the third time! I’m tired of being jerked around like this, I’m tired of being like this….I want to be “normal” again. I want to be able to walk normally, not have to take so many pills, or spend my days off lying on the couch with a heating pad recuperating from having to work for 5 days! I want to be able to live my life pain free again. I want to not have to watch the clock to see when I can take my next pain pill and have a little bit of the edge taken away. I want to be able to make it through a day without having to take a nap because my medication is making me so tired that I can’t go on anymore. I know this is a lot to want but it’s just wanting to be like a normal human being again. Is this really too much to ask? I’m so frustrated by this situation that every time something happens that’s not according to plan I have a mental breakdown! That’s not the way it’s supposed to be! I’m not supposed to spend hours crying because of a procedural change or because I messed up something. It’s not normal! I don’t even know how to define “normal” but I bet it’s not what I’m going through. The Lord must really think I can handle a lot because He sure is laying a lot on me at once. So since I haven’t written one in awhile, here is my prayer for today…Lord, let me win once, let me get this procedure done and over with. Please Lord let it work, let me feel like a human being again. Please take a little bit off of my plate so I can feel like I can at least make it through another day. Carry me through this Lord because I sure can’t walk through it alone. Amen

Written November 30, 2007

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  • Posted by Cathy
  • 30 Nov 2008

I am tired ALL of the time. At work I keep myself busy so I won’t fall asleep. When I leave work is the time I’m scared the most. I normally call my mom, sister or dad so I can stay awake while I drive. Driving scares me a little bit right now because I am so tired. But what am I supposed to do? I have to work and no one lives near me to car pool. I have tried taking my pills when I get home, but when I drive home the pills are wearing off and that makes me tired as well. I have been trying to take a nap everyday when I come home (when I work days), and when I work nights I take a nap before I go to work. I don’t know what to do, I never used to be like this.

Written November 27, 2007

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