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  • lasrlsrps
    replied
    I am glad you posted and got so many responses to you question. I agreed with all of them, and I am so very glad you told your husband. I had a very hard time myself telling my husband what was going on, why I did not want to have sex and so forth. He had no understanding why I had a bathroom date every 15 min. or more of less at times. He's get so fustereated when I would go and he'd tell me 15 min. later we are leaving and I'd go again. I finally told him on the night I took myself to ER what was going on and why I was goign to my OBGYN so much. It was a week after he dinosed me with IC. I was releived to know what it was and shared the information with my husband, since then he has been much more understanding, about all of this. I am so very happy you have a husband who says he'd be right by your side day in and day out to help you go though this. It is so important. I don't have insuance right now and you know what surpprised me my husband said he did not care I needed to get in and find out what else I can do for option to help me, he is there for me, like your good luck with everything and keep us posted! WE care!

    Lori

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  • vm
    replied
    icpatient - Good for you. I know how hard that must have been to tell your husband. It sounds like there was a really good outcome. I hope you feel like a little burden has been taken off your shoulders.

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  • runningshoe
    replied
    After over 12 years of remission my IC returned. It just about killed my spirit. I posted in Feb. that I just couldn't stop crying. But today is a better day and don't be afraid, you will have remissions again and you will find peace even with this illness. Start today by going to the dr and starting the IC diet and begin the process to heal. We are here for you!

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  • sami4
    replied
    Ic

    There are a lot of treatments you apparently havent tried for IC? I am thinking of instills, Elmiron, Elavil. So you have a lot to try.
    Remember a relationship is a two way street; sometimes you give, sometimes you get. When it always has to be one way, it is a relationship of one. Give others a chance to show their caring for you and tell your family about this and accept graciously their attempts to care for and comfort you.
    Sammi

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  • icpatient
    replied
    Zygala87......

    BCG is a weakened strain of the Tuberculosis bacteria. It is administrated through bladder instillations. It is know to stimulate the immune system in the bladder and has been used for years for the treatment of bladder cancer. It is effective by changing the bladder immune system. From what I hear, they aren’t using it anymore for IC.

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  • icpatient
    replied
    I know all of yall are right.......I sat down with my husband last night and told him. He wasn't real happy that I didn't tell, but I tried to explain. I told him I wanted to stay his wife and not his patient. I'm not sure if this makes sense to everyone else, but I think it did to him. We are going to get through this together because we are going through it together....as he pointed out just like yall pointed out. I guess I knew it was time to tell him and is probable one of the reasons I posted on here.....to hear someone else tell me it's time.

    I also have a dr appointment next Friday...not looking forward to it...but it has to be done.

    thank you all for your advice and sharing your stories. It really helps to know that others do or have felt the same way.

    thanks.....

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  • Zygala87
    replied
    What is a BCG treatment? You know you must share your new problems with your Doctor plus not telling your Husband might make him feel very let down when he does find out. You would be the first one to want to hear from your loved ones should they have such problems. They love you. Nothing is going to change that. I was of a mind that I would deal with IC myself. I am still in charge of my family and their care-giver. The strong one! Ha, I very quickly changed my mind and let them help as much as they wished. I now baby myself and I am sometimes even selfish. We go all through the same feelings as someone who knows they are going to die: from denial to finally acceptance. I felt important to be able to help my loved ones. Now they feel they are important to me in the same way. We didn't ask for this ,it hit us on it's own. I Pray you get feeling normal soon. I really care about you. Don't try to go it alone. Big Hug, Ziggy

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  • Briza
    replied
    Not much to add but a
    I've had remissions, too, and it can be devastating when the symptoms come back. I understand.

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  • miasowell
    replied
    yet another person to agree with everyone else. Men like to think they can fix all our problems and even though they can't, it is more hurtful to him if you keep it from him. By nature he is your protector so he feels like you don't trust him to endure this with you. This is a chronic disease and if your really think about it you aren't the only on in your family to have IC. They may not have the actual symptoms but they suffer just as you do. ANY chronic diesease whether it be Lupus, HIV, Addiction.... These are all diseases that effect our loved one and those we care for and care for us. Sometimes we forget this and just get all intraverted when it comes do our disease. Often some women don't have any support at all. Take advantage of the your family's willingness to support you through your flares and enjoy your remissions. This should be like all other obstacles your family faces throughout your lives. Together you are stronger than just one. Good luck and feel better soon

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  • GriffsMommy
    replied
    I'm so sorry to hear that your remission is ending. I really agree with everyone else you need to tell your husband and your dr. You would be very hurt if your husband did not tell you if there was something wrong with his health. I'm sure he would be upset to know that you have been suffering and didn't tell him.

    We all want to take care of our familes but if you lie to yourself and everyone about being out of remission it's only going to make it worse. I know that I stress will bring on a flare for most of us very quickly. I would imagine that the stress of keeping this to yourself is only making it worse.

    I hope you start to feel better soon.

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  • stacey79
    replied
    It is hard to feel like we are "burdening" our loved ones. I, too, have a very supportive and loving husband who takes good care of me when I don't feel well. Early in our struggle with this, we had numerous discussions. Sometimes he would hesitate to share stressors in his life with me because he felt like I had enough to deal with. But, through talking, we realized that doesn't work either. Part of being married is approaching life as a team. If you put yourself in your husband's shoes, you would want him to tell you so you could take care of him. That's the nature of love. Just like any relationships, marriages are certainly give and take. There are times my hubby is taking care of me and times I take care of him.

    One of the great things about these boards is that we all are going through this together. Sometimes just hearing another person's story about her struggle reminds us that we aren't alone. There's nothing worse than feeling like we're the only person who has ever felt a certain way.

    I hope you find some relief soon!

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  • tigger_gal
    replied
    I do agree that you should tell your hubby and doctor.
    I am sorry you are feeling so bad. I hope you feel better soon.

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  • vm
    replied
    Summon up your courage and tell at least a couple of people. Keeping it all in isn't good emotionally, but it can also affect you physically and make those flares worse. Not to mention that when someone is in pain and they don't tell us, sometimes we think we are the cause of the change in their demeanor.

    Mostly tell someone so that you aren't alone. It's OK to need help from others and others would probably like to be there to support you, too.

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  • armslee
    replied
    2nding Donna's statment. But adding.... TELL YOUR DOCTOR, TOO!!!

    It is wonderful that your husband is so supportive of your illness but lying to him is NOT the way. This disease as well as all my other problems has almost ended my marriage. This came from me not talking with my spouse about how I really felt. He felt abandoned by me.

    I hope and pray that you will take some time today to reconsider your current situation. If your husband trully loves you and is supportive, he will be there for you to lean on in your time of need.

    God bless-

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  • ICNDonna
    replied
    Please tell your husband today. You have been in remission so you know it can happen --- and you will get there again.

    Your husband loves you and may feel hurt if you don't trust him enough to let him know. You need his support.

    Warm hugs,
    Donna

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