• Posted by Cathy
  • 19 Dec 2008

Sorry I haven’t been updating lately, I have been busy making Christmas presents. Update from the doctor’s office is- to lower the muscle relaxer down to once a day (at bedtime) because it is making me so tired, and to start doing daily bladder instillations.

Since it has been a week, I have tried lowering the muscle relaxer and it’s causing quite a bit of pain, I started taking 3 again on Thursday. So I did give it a week to try out. I haven’t started to instillations yet, I have to get the syringes and needles. I have the lidocaine, that is all I will be using since I can no longer get my hands on any heparin. So I’ll update with details on how that works. Happy Holidays!

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  • Posted by Cathy
  • 10 Dec 2008

I turned my battery back on Monday. The last time I was at the doctor’s office a woman who is trained at adjusting the settings, adjusted all of mine. Previously to her adjusting the settings, everytime I turned any setting it felt like it was in my tailbone and would send me through the ceiling! I’ve had the battery turned of since April when I had my bilateral nephrostomy bags. I turned it off to see if it was the nephrostomy helping me out or if it was the battery making me feel better. I turned it back on after my urostomy surgery to see if it would help when the pain came back. But the pain from the battery was worse! So 4 weeks ago when I was at my doctor’s appointment they switched the settings. So far one of the settings that used to be really good doesn’t help, it makes things worse. I turned on another setting on Monday, it is making me tired again and I”m not noticing any changes, it seems to be giving me more pain. So I think I will be turning it off tonight, and hopefully get a good nights sleep! So we’ll see.

So…more about my google alerts. I haven’t found anymore wacky sites but I found a new web page today, called medhelp.org. On there you can register, and keep in contact with other people who have IC. It is a nice page, there are a lot of people on there who contribute to posts daily. Quite a few I have found that are new to IC and just starting out. Oh! Another things I found was a new medication called Uracyst(R) that is currently approved in Canada. They are going to try and get it approved for the United States in 2009. It is a sodium and chondrotin sulfate solution which is supposed to supplement and replenish deficiencies in the GAG layer of the bladder. It sounds good. The only thing the site did not offer was whether or not the medication was working well for people taking it in Cananda. The web site the article was on is the CNN web site. Hopefully this will help a lot of people!

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  • Posted by Cathy
  • 08 Dec 2008

I was really hoping the urostomy was going to work. I was feeling good for about a month and a half. Now the pain is coming back. I was put on a new muscle relaxer. It is kind of working, but it’s making me very tired, and nauseas. I go to the doctor’s on Thursday, so I’m hoping to get a new muscle relaxer, hopefully. I’ve been sleeping a lot! I get 10-12 hours of sleep a night, and take at least a 2-3 hour nap during the day. I’m normally not up for more then 5 hours before I fall asleep again! So we’ll see what happens. On my last visit to the doctor (4 weeks ago), he thought the pain I was feeling was from the outside of my bladder, which is a good thing. He did a pelvic exam and didn’t have to peel me off of the ceiling after it, which is a really good thing! I turned the battery back on again. They have done some things to redo the settings. The second setting did not work for me at all. So we’ll see what the third setting does.

I got Hollister products back finally, so my skin is starting to clear up around the stoma. I tried the tapeless this time and it’s not sticking as well as the ones with tape. I’m getting 3 maybe 4 days use out of them. I do have enough to change every 3 days which is really good. So I guess I’ll see what happens on Thursday, and hopefully after that, I won’t be sleeping as much as I am now!

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  • Posted by Cathy
  • 07 Dec 2008

With all of my new google findings on IC, I have read some of the “holistic” healing things. They say that people with IC are not only affected in just the bladder but all over. So they say that people with IC are full of toxins all over their bodies. My question is how did that happen? How did my body get so full of toxins that it would cause IC? I’m not saying I believe this line of reasoning, however, with starting this website and just looking for information on IC I’m finding a lot of these websites on “holistic” healing. Not one of the sites has described how I would have become so full of toxins that I would get IC. Maybe I need to subscribe to some other sites to ask some questions and find out. Then I could understand their line of reasoning a little bit more. Anyone have any ideas??

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  • Posted by Cathy
  • 06 Dec 2008

I set up google to alert me to new sites, blogs, and the like that contain anything with Interstitial Cystitis. So I got a new one today, it was from a site about women who have had hysterectomies. So the post was about a woman who is having problems recovering, and it goes on to say she has had UTI symptoms for 3 months, but has always had a negative UTI test, and that means she has Interstitial Cystitis, and she knew she had it because she’s had bouts of it before.  After, I read that part I was really irritated. I signed up, I had to make up a hystectomy date, and I tried leaving a post explaining to her what IC actually is. So I went to post, and it said I couldn’t post until 24 hours after registering. I was even more irritated. So I’m waiting……(always waiting) I am going to make a post. This is why there are so many people who have screwed up ideas of what IC actually is! People are not informed but think since they know a little bit, well, of course that makes them an expert. I’m not saying I’m an expert in the field but I do know that a negative UTI test DOES NOT mean that she has IC!!! I’m hoping this site, and hopefully things the IC Association and IC Network are doing will help to inform people to what IC actually is!!

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  • Posted by Cathy
  • 05 Dec 2008

This comes from the IC Association. The study information is:

New Sleep and IC Symptoms Study is Now Recruiting

A women’s health nurse practitioner with 10 years of experience treating IC patients and a doctoral student in nursing are asking for your participation in an innovative study. Your help is needed for this study which will look at sleep quality and interstitial cystitis symptoms.
This 20 minute online questionnaire is voluntary and completely confidential. You will be asked to complete several questions about your interstitial cystitis symptoms, your sleep habits, and some demographic information.
Researchers are looking to interview women:
  • with IC between the ages of 30-60 years old
  • with IC diagnosis made by a specialist who performed a potassium sensitivity test or bladder hydrodistention.

Click here to find out more, including how to participate in this study.

I clicked on the information page it the age limit is very tight. You have to be at least 30 to participate (too bad I’m 2 years off).

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  • Posted by Cathy
  • 05 Dec 2008

If you link to the IC Association there is a new way they are raising money for the IC association and research. When you open the page there will be a link called Shop iGive.com and search iSearch.iGive.com. You can register and donate money from each purchase to the IC Association. Just click on register, then select your state, select Health in the next drop down box, and you might want to type in Interstitial Cystitis otherwise you will get a huge list of organizations. There are a lot of online shops that are pretty well known. So if you want to help the cause, sign u p and Happy Shopping!!

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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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