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  • hello everyone

    My name is Missy and I have only been DXed with IC since Sept, but have had it for years. Haven't been able to work since then. Am a RN,worked with Hospice and home health in a very rural area for the past ten years. On elmiron, hydroxizine, paxil, and pain meds. Self-cath using instillations of heparin and marcaine or ropivicaine. Have severe pain that I have been trying to control. Diet, pain meds don't seem to help me much. Am set for interstim trial on July 27, I really need this to work so I can work! Would love to talk to anyone. Have a very supportive and understanding uro and good medical team. But I feel so isolated by this disease, which is exacerbated by my inability to work and also my husband moved out 1 week ago.

  • #2
    Hi Missy. Welcome to the ICN. I am an OTR and had planned to return to work last Fall, when this whole IC started. I love home care. Hopefully, I can return this Fall when my one and only child starts the 2nd grade. I am diagnosed since December 1999 with IC and currently take Elmiron 3x daily, follow the diet, and take Ativan as needed for pain. (I am getting ready to take one now; always wait awhile to see if the pain resolves on its own.) I am sorry the last few months have been so rough; why did your husband leave? It's okay if that is too personal, but I'm here if you want to talk to someone.
    I was at an anniversary party today, and besides there being a problem with like 90% of the food being served (because of the IC no-no list) the other 10% contained MSG and other additives. I am hypersensitive to the latter---MSG especially causes an awful reaction. And because I can't read labels of food served, I'm always scared something has MSG in it. I ended up eating the roast beef, some potatoes and a small serving of mostaccholi that had very light tomato sauce.
    I even took 6 Prelief before I ate, and now I am feeling the wrath of the tomato! Tomato sauce and pasta is my very favorite meal (or used to be.) Just ate it today in defiance! I just looked around the hall today and thought everyone here can pretty much eat the food served---why can't I? I am sick of feeling like a freak because I have a disease that noone has ever heard of or understands when you try to explain it to them. I have not told too many people so I can feel like a "normal" person when I am with them. I hate this disease! I feel isolated too! Especially by this diet as food is such a social thing.
    I am sorry for all the griping it just all spilled out. I just want you to not feel so isolated; there are others with this darn IC and I understand how much you want to return to work, so do I. Actually, I wish I could wake up in the morning and just go to work like regular folk and pee maybe a couple of times, eat whatever for lunch, and come home to my family and jsut do what other people do everyday, instead of my life revolving around IC.
    Missy, I am usually a more positive person, so hopefully I will leave you a post in the future that brightens your day. I am just doing some selfish venting right now.
    Good luck to you and I hope your IC pain gets under some kind of control soon. I also hope, your husband leaving a week ago, will somehow work out too---I'm here if you need me okay? Good night and thanks in advance if you read my rambling, complaining post.

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    • #3
      Hi Missy,
      Welcome! My name is Dianne. I'm an OB nurse for 23 yrs. in a community hospital in Montana. I totally understand the isolation. I'm really isolated out here. My coworkers did NOT understand. They kept viewing it as a UTI and why didn't I just "get an ABX?" I've had IC for 5 yrs. and really been to hell and back, esp. since I'm in a rural state. Being an RN and the fact that I diagnosed myself didn't help any either. I've done DMSO, elmiron, tagamet, NSAID's, alternatives, L-Arginine, heparin, hydrodistension, numerous alternatives, and more things than I can remember right now. I'm 12 weeks on the SANS unit now and that's been the best so far. My frequency is normal and I'm pretty low pain. I only know two people in Mt. with IC, one too flakey and not interested in visiting and the other is a very light case who is convinced if I used her brand of water I'd be well, and can't seem to make her understand I'm way more severe than she so bombed again. So this board is my lifeline for IC contacts and info. I rarely find an RN that ever even heard of IC. If it weren't for this board, I wouldn't have known about the SANS. One lady posted on the Montana category and I got so excited but can't get her to email me off the board and I didn't want to discuss the gories of my IC in a public forum given my career, the fact I've alienated a bunch of doctors in the course of getting diagnosed and because I don't know who's reading it, so hopes dashed again when she didn't answer. Oh well. I hope this medical board takes off. Any questions, whatever, post away. I'm in a really good place with my illness right now and certainly wish you the best with the interstim. It wasn't available in Mt. but the SANS was. I'm doing my own.
      Dianne [email protected]
      Dianne

      My bellydance "sisters" , our dogs, and me.

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      • #4
        Originally posted by Brookelyn35:
        Hi Missy. Welcome to the ICN. I am an OTR and had planned to return to work last Fall, when this whole IC started. I love home care. Hopefully, I can return this Fall when my one and only child starts the 2nd grade. I am diagnosed since December 1999 with IC and currently take Elmiron 3x daily, follow the diet, and take Ativan as needed for pain. (I am getting ready to take one now; always wait awhile to see if the pain resolves on its own.) I am sorry the last few months have been so rough; why did your husband leave? It's okay if that is too personal, but I'm here if you want to talk to someone.
        I was at an anniversary party today, and besides there being a problem with like 90% of the food being served (because of the IC no-no list) the other 10% contained MSG and other additives. I am hypersensitive to the latter---MSG especially causes an awful reaction. And because I can't read labels of food served, I'm always scared something has MSG in it. I ended up eating the roast beef, some potatoes and a small serving of mostaccholi that had very light tomato sauce.
        I even took 6 Prelief before I ate, and now I am feeling the wrath of the tomato! Tomato sauce and pasta is my very favorite meal (or used to be.) Just ate it today in defiance! I just looked around the hall today and thought everyone here can pretty much eat the food served---why can't I? I am sick of feeling like a freak because I have a disease that noone has ever heard of or understands when you try to explain it to them. I have not told too many people so I can feel like a "normal" person when I am with them. I hate this disease! I feel isolated too! Especially by this diet as food is such a social thing.
        I am sorry for all the griping it just all spilled out. I just want you to not feel so isolated; there are others with this darn IC and I understand how much you want to return to work, so do I. Actually, I wish I could wake up in the morning and just go to work like regular folk and pee maybe a couple of times, eat whatever for lunch, and come home to my family and jsut do what other people do everyday, instead of my life revolving around IC.
        Missy, I am usually a more positive person, so hopefully I will leave you a post in the future that brightens your day. I am just doing some selfish venting right now.
        Good luck to you and I hope your IC pain gets under some kind of control soon. I also hope, your husband leaving a week ago, will somehow work out too---I'm here if you need me okay? Good night and thanks in advance if you read my rambling, complaining post.
        Hello, can I call you Brook for short? A plesure to meet you. You can ask any questions, the ICN is a safe refuge for us My husband left because I could not be there for him and he could not be there for me because of the IC. We all know chronic illness can make a marriage stronger or put stress on it till it breaks. We were DXed around the same time. I received SS disability 3 months ago. Am on the diet, use Prelief also when I cheat. I hate the diet too. We have a lot in common! I self cath 2x a day with Marcaineor Ropivicaine with Heparin. Also on Elmiron 600mg q day, Paxil, hydroxzine, pheneran and lorcet. And I never took meds till this disease. I would love to get off the drugs. Hope to talk to you again. Missy

        Comment


        • #5
          Dianne, nice to met you. I like your attitude. A plesure to meet another nurse with IC. There are a lot of us, and teachers too. I had never heard of IC until I had it. I was lucky, I have an old friend who is a PA, and she pushed the only goup of uros within an hours drive. They did dx me with severe IC, but there attitude and treatment was archaic. Thanks to the ICA and ICN, I found a great uro now, worth the 2 hour drive. So, I only have burned one bridge! But I live on the coast, inside the Outer banks, surronded by water, and I need every bridge! Especially now since it is hurricaine season again. I dont post frequently but would love to talk to you again. Wish me luck with my Interstim trial. I am so excited! Missy

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          • #6
            Hi again Missy. Sorry I haven't replied to your post sooner, but had a busy weekend. Had a birthday party for my son with 29 kids at bowling alley yesterday. Phew! But it went well. My husband coaches my son's T-Ball team and I have a lot of the "busy" work to do. While the emphasis is not on winning, our little team is in first place and I am in charge of ordering the trophies tomorrow after driving myself batty over what to get earlier today at the trophy shop. LOL
            A lot of the meds you take are not familiar to me because the dr. says my case is mild. I don't have to self cath or anything, but feel some level of discomfort most of time. Geez, for having such a mild case of IC my life is certainly affected in a huge way or should I say screwed up. Tried to have sex with hubby last night after about 2 months, and it didn't feel very good, but did not admit to him because I miss the intimacy we once shared. I am not a nympho or anything (LOL) but like that closeness. Really, really miss it. And the lack of it is really affecting our relationship big time!
            My hubby and I are having a rough go of it here. He at first was great, but a chronic illness wears thin. Doesn't get my "*****" act. Thinks that's what I am most of time. And I guess I am. &*^%$%$^^ this IC!!! I totally understand why you and your husband have went the direction you have. I am so scared this will happen to us too! But, it isn't your fault or really his. It's very hard to maintain a marriage under the stress of this IC, though I feel I have pretty good coping skills and attitude. It's just that he doesn't---maybe I'll tell you all about it one day.
            I also feel guilty when I read all the other posts because so many of the folks are having a much rougher go of it then me. Feel like a big whiner. Appearance wise, I am leading a normal life. I am good at hiding the discomfort---a good faker! I think this causes even more stress at home as I need a break from the faking. Everyone is like "You look great" and all I can think is "but my bladder hurts right now and I am starving to death" and I can't eat the pizza you are eating right now or much else for that matter. etc. etc. " I have lost weight, like 20 pounds from this diet because I have no appetite. I am having a terrible time with the diet--never realized how important food was to me. And Bev Laumann's book is not really helping me. I feel like a scientist everytime I eat because on top of the IC deal, I also have the hypersensitivity deal too. I have to analyze everything I eat. I just can't believe this is the way it will be the rest of my life!
            I just reread my post and realized how I've responded in yet another negative post. But, I feel like I can talk to you more so then others here, because we started this Ic thing about the same time. And I am sorry for how things are going for you and wish I had a magic wand. Why did this happen to us huh? The only way I ultimately deal with this is I look to my brother. He has had terminal cancer for 5 years (has outlived all the docs predictions) and is saying the hell with it and living his life the best he can. He has a level of pain that only oral morphine can slightly abate. And we can do it too Missy! This illness will not kill us (though it feels like it huh?) I know you will get better; it is just gonna' take some time. And I will be here with you when you are having it rough. Remember, I have a whole bag of "faker" tricks, LOL. And you know what? They sometimes actually work
            and I am able to participate in things I never thought I could.
            I am really glad you posted here. I think you sound like a great person who has been dealt a bad hand. I really hope you and your husband find your way back to each other. Maybe you two need time apart to think things through and figure out what you need from each other or from life itself. Maybe he needs, like most men seem to, some time alone to figure it out. Have you considered counseling at all? Me and my husband have been married for 10 years, how long for you? We tried counseling once, but again, another day for that story.
            Missy, thank you for opening up to me and giving me a safe place to feel like I can let it out! I am sick of having to be so strong for everyone else, again, we'll talk another day about that too!
            I hope you find peace soon and better days too! They are on the way. Hugs to you and hoping your day has been good. Goodnight! Gosh, I can really blab a lot huh? LOL

            Comment


            • #7
              Hello again Brook, a plesure to talk to you again. My sex life for three years was terrible. I was so good a acting too. I still am. But when I cath and instill Marcaine or Ropivicaine I can have normal sex. It stops some of the pain, and cuts frequency and urgency. I am not a slut either, but like you, I did not want IC to stop the things I like. Guess it is why it hurt so much when my husband left, we had gotten back to having great sex, and I hate to give up sex. I am in the process of regaining my self back. I hated my body for years, like it betrade me. But I am learning to love my body and myself again. Brook, like you everyone tells me I look great. I too have lost weight on this diet. I can't believe so many women say they gain weight. Two good things about IC are at least it is not disfiguring and it won't kill you unless you suicide out. Having a severe case of this really sucks, but at least I have a great uro, a nice place to live with indoor plumbing, and plenty of toleit paper! Missy

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              • #8
                Hi Missy, welcome to the boards. My name is Julie and I am a social woprker. I just had to quit my job because of the pain of this disease and other things. But I wanted to say hi and to say that I understand where you are coming from. I also am set for a interstim trial and hope that it works. My understanding is that the interstim is really only effective for frequency and urgency but it is effective in pain for a few. So I'm hoping to be a few. I will also be doing heparin instills and maybe BCG. I think I want to go that root. We'll see. But I, like you, am struggling with the pain.

                Again, welcome and I hoipe the trial works. Jules

                Comment


                • #9
                  Originally posted by Jules:
                  Hi Missy, welcome to the boards. My name is Julie and I am a social woprker. I just had to quit my job because of the pain of this disease and other things. But I wanted to say hi and to say that I understand where you are coming from. I also am set for a interstim trial and hope that it works. My understanding is that the interstim is really only effective for frequency and urgency but it is effective in pain for a few. So I'm hoping to be a few. I will also be doing heparin instills and maybe BCG. I think I want to go that root. We'll see. But I, like you, am struggling with the pain.

                  Again, welcome and I hoipe the trial works. Jules
                  Dear JulieJules, I have felt the pain of not being able to work. You have a great attitude, but sometimes IC just sucks. It affects every aspect of life. Did my Interstim trial and went from 30 voids to 6 !
                  What a miracle. Will get permanant placement on Aug 28. And I just got a job for an insurance agency where I will have a very small caseload to contact at my leasure from my home on the phone, pay is great. I think it will be ideal. So sometimes doors do close. But they also open to those of us who keep working on our own solutions, Stay strong, enjoy your time with your family. Missy

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