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I said it before and I'll say it again!!!!!!

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  • I said it before and I'll say it again!!!!!!

    Husband's Corner!

    I've said it before and I'll say it again! We need a section solely for our care givers! Whether it be our Husbands or other family members. The good ones need to be praised and thanked for their many sacrafice's. And for the ones who only get it when its convenient for them or on the other about the fact that "we are a hand full". I am the Queen of Cancelling plans. Just yesterday my daughter arranged a family barbeque....why? Because in the morning when we spoke I was feeling good, that was about 10:00AM, by 2:00pm my Husband saw that look in my eyes and said I'll make the call for the first time though I made him go without me even though he really didn't want too. This is her new house that she's been in for over three months now and I her Mother still hasn't seen it! Lindy and I are as close as a mother and daughter can be. My Husband said there were tears at first when his car pulled up minus Mum and how unfair it all is that all shes asking for is her Mum to see the place, until he reminded her of how unfair it really is to the person dealing with the desease. My first marriage was extremely abusive for 10 yrs. Keith was Bi-polar with a personality disorder. So I know first hand about the frustration of looking after someone who needs attention. Not really in the same ball park I know but still. However, I have been married to Henry for 14yrs. now and he is a GEM, a Prince amongst men. but even he needs someone to talk to at times. I know when dissapointments hits him and I know how helpless he feels and there is truly nowhere to go for him. It truly is a case of getting over it and moving on! Please lets give them a place to go, we might save a few marriages in the process!! I know Henry would be in agreement in getting the ball rolling and hopefully the rest will open up and follow suit.

    Take Care
    List of meds:
    Hydro-Morph-Contin 12mgs 2 per day
    Pyridium 100mgs 8 per day
    Eltroxin 0.1mgs 1 per day
    Oxycocet 325mgs 8 per day
    Protein Shakes 4 per day
    Probiotics 3 per day

    Crap to Deal With:

    Severe IC for over 20yrs
    Warped Sense of Humour
    If your feet smell and your nose runs, you were born upside down!
    IC A CURE!

  • #2
    we have a family section (where you posted) and a srelationship section.
    I agree that our better halves should come on here and talk. I know mine would never consider it. I am glad you have Henry, he sounds like a great guy.
    maybe henry can write up directions to those of us who have um.. lets say, issues with dealing with us.
    I sure hope you start to feel better soon.
    'The will of God will never take you where the Grace of God will not protect you.'


    • #3
      Hi Adele.
      I do agree and think that there should be a place for the caregivers to talk and vent. I know it is not easy for my husband to have me sick all the time. The stress is awful on him as he is our only income. He just is about to finish his masters degree and is graduating the May 5th. He did it so he could become a shcool principal or assistant to make more money since I cannot work due to all my health issues. He is a teacher now and that just is not cutting it as far as all the bills we have.
      He is also a gem in my eyes. I consider myself very fortunate to have such a great husband. He is very understanding and caring and very very helpful. I help him when I can also. I do alot of paper grading and putting grades in the computer, it is done through the computer now. That is a ton of work in itself. And he works for one of the top gifted schools here in the state and the demands are high as is the work load.
      I know also that my hubby knows that if it were the other way around and he were sick, I would stick by his side as well. I mean he knows I would give anything not to be sick. I miss working and doing all the things I use to do. My 15 year old son is even acting out lately and I think it is because he has seen me sick for the last 4 years with all these health issues and it is affecting him.
      I know that my hubby misses out on alot of things due to my illness, but hey, that is called marriage and sacrifice. I did not want to be sick and it is not my fault. He knows this. We try and make the best of things as much as we can. I love him with all my heart and would do anything for him and I know he feels the same for me.
      I do think the caregivers do need to venting place also though.


      • #4
        This actually is the board for "Family & Friends of Patients With Interstitial Cystitis" to post on. Anyone fitting that description is welcome to start a thread here - we'd love it.

        Diagnosed August 2001

        Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)

        Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

        I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.


        “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

        “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy


        • #5
          Consider myself lucky

          As I stated on another thread earlier this evening, I am very fortunate to have a supportive husband through this disease. The last year, I have not been able to run a vaccum or mop the floor because it hurts of the pain that it causes me so he has taken care of that for me. He loves to cook and has basically done most of the cooking for us. He does all of the laundry (that is his choice, this is something he decided he liked doing a few years ago.)

          In December, 2006, he was reorganized out of his position of 28 years so he is looking for a job and this has been very difficult for him. I have tried to be very supportive of him during this time as well. He is diligently looking, but for some reason, companies think that 51 is old now. Please keep him in your prayers

          The one positive out of him being unemployed is that it has allowed him time to spend with me going to doctors, asking questions, actually sitting through exams and instillations (his choice) even learning some physical therapy to help me at home and he has gained a much better understanding of the diet, diesease, and how difficult it really is for me. I have IC, IBS, Vulvodynia, and PFD, Migraines, TMJ and Mitral Valve Prolapse. He has truly been a God send for me and by him gaining more knowledge, has brought much more patience and understanding.

          I am still working, and he says honey, I really do not see how you do it. He knows that there are many days that I work with levels of pain that are easily 6 - 7 and manage to stay all day and then there are some days that I just can't take it any more and have to come home.

          Between him and my son and my two sisters who are trying to learn more about IC as well as my sister-in-law who just fought breast cancer and won:woohoo: I am a very lucky person to have such a wonderful supportive family.

          By the way, he just told me men don't chat on line about IC, they chat about sports.


          • #6
            This is the board that was started for family members of IC patients so they would have a place to come for support and communication.

            Stay safe

            Elmiron Eye Disease Information Center -
            Elmiron Eye Disease Fact Sheet (Downloadable) -

            Have you checked the ICN Shop?
            Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

            Patient Help:


            Diet list:

            AUA Guidelines:

            I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

            Anyone who says something is foolproof hasn't met a determined fool


            • #7
              Excellent Support


              I realize this board is for family support and communication. I was not making fun of the sight as well. I was just saying that my husband probably would not be one that would be on line chating, but he is always interested when I share any information that I receive from her with him.

              We are both truly thankful for the website. I hope that I have not offended anyone with my comment about men and sports.


              • #8
                I also understand that there is a board set up for family and friends; but I know my husband will never post here even though he could use the support, because it is open for me to read. There are things he needs to get off his chest without worrying about hurting me. No matter what he called himself, I would know -- and even if I wouldn't, he thinks I would. So it comes to the same thing. I also don't really want him on the site, poking around and maybe reading some personal things I posted with the expectation that he would not be seeing them. So many of us have posted about problems with our S/O's not understanding, or problems with our sex lives, that there may be a lot of ICN members who are not anxious to invite their husbands to join.

                I wonder if other husbands and S/O's feel something similar. If there were a private forum for them, maybe they would come.
                Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
                Wishing you happiness and good health, and all the best out of life.

                Peace, Carolyn

                Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007

                On the Beach with IC


                • #9
                  I know my husband supports me in everyway that he can, but he won't come on the boards. Either he doesn't have time or what, I don't know, he will find an excuse not too! But I know if it wasn't for him, I probably wouldn't be around. I know between him and my best friend they support me in every way they can.