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  • #1

    Living a lie

    Ok...this going to probable seem really stupid, but I'm hoping there are people out there who have been where I am and can offer some advice.

    I was diagnosed with IC in 2003. After trying all the usual drugs and treatments...my dr started the BCG treatment. I know some people say it doesn't work for IC, but it did for me. I went into remission around December of 2005. I have lived IC free....COMPLETELY!!!! I have eaten and drank what I wanted and even began questioning if I ever really did have IC....although I have the ulcers and it has been diagnosed without question. My marriage has been wonderful and my life has been a real life since then.

    Well, for about the last month I have been having bad pains, frequent urination and the whole bit...again. I have kept this information to myself. I can't bear to see the look in my husband's eyes when he looks at me once he is made aware. He is such a good and caring husband and took care of me better than a hospital could have before with my IC. Whenever I have a flare....there has been only one bad one...I just blame it on something else...a headache or such.

    I can't go back to way life was before....it really scares me. I know my husband loves me and will do whatever he needs to to make me as comfortable as possible....I know my daughter will do whatever she can. But I don't want them taking care of me......I like taking care of them...I like being there for them. I haven't even shared my recent symptoms with my dr. Although my last visit to the dr showed blood in my urine.....that's when I knew.

    I know I can't keep living in denial, but I will put off telling my family and friends as long as I can. But, I knew I could come on here and most of you would understand.

    thanks for listening.
    Tags: None
  • #2
    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
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
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    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.     [3MG]

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

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    • #3
      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-
      Wendi
      IC symptoms began in 1975; diagnosed in March 2006.
      Other conditions: PFD, Migraine, VV, Total Abd Hysterectormy on 12/27,06 for Cervical Cancer, Fibromyalgia.
      Current Daily Meds: Roxicet, Methadone, Flexoril, Flomax
      I use Prayer, Yoga, Relaxation Breathing and TENS to help relieve stress, anxiety and pain- LOTS of make up to hide my true identity!

      myspace page:www.myspace.com/armslee

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      • #4
        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.
        Kim

        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

        Comment

        • #5
          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.
          'The will of God will never take you where the Grace of God will not protect you.'

          Comment

          • #6
            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!
            ~ Stacey

            Comment

            • #7
              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.
              Christine



              I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
              1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
              2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
              I have tried every oral medication as well as rescue instills and DMSO.

              I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

              Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
              Also proud mom to the best Bullmastiff on earth, Claus

              Comment

              • #8
                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
                Mia Sowell
                Fort Worth, TX
                2 Kids
                Ethan (3)
                April (17)
                Husband Eric (Very Supportive)
                Clinically Dxed 04-16-07
                Symptoms Since 2004

                Meds:
                Elmoron 400mg 2x Day
                Atarax 50mg 1x Day
                Xanex .50mg 8 hrs As needed
                Vicodin 5/500mg 4-6 hrs As needed
                Xanaflex 4mg 1x Day
                Urelief Plus 6 hrs as needed for Bladder spasms
                Prelief as directed

                Comment

                • #9
                  Not much to add but a
                  I've had remissions, too, and it can be devastating when the symptoms come back. I understand.

                  Comment

                  • #10
                    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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                    • #11
                      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.....

                      Comment

                      • #12
                        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.

                        Comment

                        • #13
                          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

                          Sammi

                          Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
                          Diagnosis: IC, PFD (both in remission)

                          Comment

                          • #14
                            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!

                            Comment

                            • #15
                              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.
                              Kim

                              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

                              Comment

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