• 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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  • Posted by Cathy
  • 30 Nov 2008

I urinate frequently through out the day. Sometimes as few as 10 and others as many as 30. The WORST and most FRUSTRATING time of the day is bed time. I normal write and read or just read for awhile before I go to sleep. Let’s say I want to go to bed at midnight (I’m a night owl) I will get up 3-10 times before I actually fall asleep so I end up going to bed between 1 or 2 instead of midnight. I don’t know if I have a fear of not waking up or what it is, but I just can’t fall asleep until I feel like I don’t have to go anymore. But the time I reach the 3rd or 4th time I’m pushing to get just a little bit out, and it makes my pain worse. I know there’s nothing in my bladder but it sure feels like there is (just another wonderful symptom of IC). Any different way I lay, side, stomach, back, it feels like I have to go. No matter how tired I am or if I’m falling asleep I still get up and go. Half the time I’m falling asleep on the toilet! It’s so frustrating and I don’t know what to do about it. I’m hoping the interstim (nerve stimulator) actually works!!

Written November 25, 2007

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  • Posted by Cathy
  • 30 Nov 2008

Understanding is very difficult when you have IC. Your family and friends (at least the good ones) are very supportive, listen and help you with what you need (carrying your laundry up the stairs, doing your dishes and cleaning your place because you can’t move off the couch). Or it can be just as simple as watching a movie with you, or just spending the day, it helps to make me feel as “normal” as I possibly can. They only hard thing is they don’t know what you are going through. They are sympathetic, but don’t truly understand the pain. Something as simple as taking a shower can send me to the ER.

Support through this is key, it is what has gotten me through this pain…..however, having someone who has gone through it or is experiencing something similar is crucial. I have someone in my life with a closely related condition. He can relate to the multiple bathroom trips, and the pain. It’s good to be able to talk about the conditions, medications and treatments freely with someone who is experiencing something similar. This helps a lot! At least he isn’t saying “I feel sorry for you!!” I still feel the need to talk to someone who is going through the same this as I am. Someone who is tired of the millions of pills, the pain and someone who is feeling the same hopelessness that I am. It always seems my doctor is there with the answer, however each answer only lasts 3-4 months. We’ll see how long the next answer will last.

Written November 24, 2007

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  • Posted by Cathy
  • 30 Nov 2008

People don’t like to see the girl who is limping around, struggling to walk, or grasping onto walls so she can take the next step. People like to see someone who is ok, so they don’t have to worry or ask if you’re ok. I hear a lot of “I feel so sorry for you” looks or people who tell me that. I would prefer not to hear it, I would rather people asked, I have no problems explaining. My new motto is Knowledge is Power. The more people know about IC, the more they will tell other people, and the will tell, and so on. Eventually it will get to someone with money, and we will get more funding, or even publicity, or fund raising. So to avoid these looks, I hide behind the face that says, “everything is fine” mask. It’s not. I have a hard time just picking up my niece and nephew (both just over a year), by the end of spending one day with them I am trying to figure out how I will walk anymore. If I don’t pick them up and play with them it kills me inside. I love the two of them dearly, right now they are the two things in this world that make me happy. It does hurt to pick them up and play with them, but I put on my mask and watch the clock to see when I can take my next pain pills. I do a lot of clock watching. I stay up for an extra hour at night so I can take more pain pills and get a little bit of relief. What kind of life is that? Having to watch the clock all the time? I live moment to moment, always waiting, and waiting. Just wanting to get a little bit of relief.

So…what is my prayer tonight? God= please help my loved ones and people I meet be able to accept me and my condition. Please help them to understand me instead of taking pity on me. Please help them to understand that just because I’m smiling doesn’t mean that I’m ok. Amen.

Written November 21, 2007

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  • Posted by Cathy
  • 30 Nov 2008

Today is the day I start my “condition journal.” Who knows maybe someday it could be a help to someone, however right now I need and out for my frustrations and feelings. When I was 19 (1999), I was diagnosed with endometriosis, and ovarian cysts. In March of 2006 I was diagnosed with Interstitial Cystitis. Pretty much, the end of my life as I had known it. The real pain started in November of 2006. I was up to over 25 pills a day and was hardly able to walk, or function. In May of 2007 I had a nerve block, that would last a week and it worked so they did a radio frequency ablation. It worked really well, I went to Disney the following week. Now the pain is back. It started in early October. My pill regiment is now MORNING: 1-20mg megestrol (for endometrosis), 2-5mg methadone, 2-300 mg Gabapentin (working back up to 3), NOON: 2-5mg Methadone, 2-300 mg Gabapentin (working up to 3), EVENING: 2-25 mg Nortriptyline, 2-5mg Methadone, and 3-300mg Gabapentin. This totals 16 pills plus 8 vicodin and 2 Valium a day. Grand total of 26 pills a day. I’m sick of it! I pee up to 30 times a day. Before I go to bed I read or now journal, and will go 3-10 times before I fall asleep. I used to have to catheterize myself to put Heparin and and Lidocain in my bladder to relax it. It used to work(just like everything else) but it no longer works. The next step for me is electrodes being put on the nerves attached around the bladder, I will have wires hanging out of my back and a battery pack (or generator as my doctor likes to call it) that attaches to my pants (like a pager). I’m going to feel like a human robot!! If it works permanent ones get put in and I get an internal battery. I hate this condition, I hate what it has done to my life and I wouldn’t wish it on my worst enemy. For some reason God thinks I can handle this. My attitude is not always a cheerful one, but I do try. So my prayer for God tonight is: God please take some of the pain away, even if it is just for a couple of minutes, please help me to accept that this is now a part of my life. Amen. Written November 18, 2007

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  • Posted by Cathy
  • 25 Nov 2008

Welcome to I have IC (Interstitial Cystitis). This is my first post, and is just a general hello. I am going to be adding posts from my journal that I have been keeping ever since I was diagnosed with IC. Also, I will be adding information about surgeries, treatments, and new things happening in the IC community. Hope you get a lot of information from this site and will leave plenty of comments and introduce yourselves! A lot of my posts are from the past, since I am taking them out of my journal. I started a “condition journal” in November of 2007. So that will be the start of the posts, I will also post a new (daily) post as to what is going on now, hopefully everyday. Enjoy!

Cathy

P.S.- Please read the About page before you continue. Also, this is a work in progress so bear with me while I update. There will be new updates daily!

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