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Diagnosed 5 years ago, how do I get family and friends to understand

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  • Diagnosed 5 years ago, how do I get family and friends to understand

    I was diagnosed with IC about 5 years ago and have had 5 hydrodestentions and cystoscopies. I have been on Elmiron but it destroyed my liver so I couldn't take it anymore, I have had over 50 bladder installations with three different medications. I now do weekly installs for 8 weeks and then once a month for 6 months of uracyst at $150 a vile and it is not covered by any insurance. I also have severe allergies to medications of all types. So finding something to help with pain and incontenince is tough. I am taking Cymbalta,(antidepressant), Lyrica(anti nerve), Tramadol, (pain) and gravol on a daily basis. On my last visit to the specialist I was told if we can't get the pain undercontrol my next option is to have my bladder removed. I am only 36, have a family with 4 kids, and work full time managing a business. I can't imagine having my bladder removed at this time in my life. I guess on top of the daily pain, depression, my biggest issue is trying to get my family and friends to understand what I live with on a daily basis. They are always trying to give me advice and telling me to take vitamins or do a certain excersise or try some herb. I don't know how to get them to understand. please help me. How do you explain to your family and friends what you deal with everyday?
    Jacquie

    Alberta, Canada
    Diagnosed in 2005
    Servere Allergies

  • #2
    Sometimes it's not possible to get people to understand. I know it's hard --- and getting tips on how to feel better doesn't help much --- I just keep in mind that they are trying to help because they care.

    Sending gentle hugs,
    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    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: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    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

    Comment


    • #3
      I'm so sorry for what you're going through. What happens if you get your bladder removed? I'm not sure how that works. It may be better than what you're dealing with now. I'll pray for you and please message me anytime. We're all in this together.

      Comment


      • #4
        Donna is right. They are giving you advice because they truly care and truly want to help you. I know it is very irritating. You may have to decide whether or not to have an honest talk with people if it happens frequently. However if it is just something that is occasional, I would probobly just let it slide. But, if it is your spouse, or parent, or someone you encounter daily, you are probobly going to have to talk to them and tell them that you know they love you and want to help, but that the help they keep offering isnt really helpful because you read online about this at the ICN frequently and are already aware of all the options out there and have tried everything that is recommended for your condition.

        That's what I have done. Yes, it is hard to do. But, in the long run, it has helped me alot to keep from getting a barrage of these kind of "helpful hints" constantly from a couple of my family members.

        Best of luck to you! I hope it goes well for you too!

        Hugs,
        Amaranthe
        I am not a medical professional. I do not give medical advice. In all cases, I urge you to talk to your Dr. about your treatment options.

        D/Xed 2003 with IC. Also have the co-existing condtions of VV, Vulvadynia, Lupus, Fibro, GERD, CPP, Endo, & Adhesions, and Depression

        Meds: Estrogel (due to total Hyster)
        The meds r/xed by my Pain Dr. from the Pain Clinic are as follows: Morphine ER and IR, Baclofen, and Lyrica and Seroquel (used off-label as a sleeping pill, but it also helps with depression)


        (I listed my meds in case someone reading this has been told like so many ICers that Drs dont r/x pain meds for IC.) I want you to know that there ARE tons of us who are also dealing w/this disease and the pain and many of us ARE on pain meds.)


        John 3:16 For God so loved the world that he gave his only begotten son, that whoever believes in him shall not perish but have everlasting life.

        Comment


        • #5
          I am also sorry for what you are going through. I will also say a prayer for you. And yes, we are all in this together.

          I have never had too many issues with family or close friends in terms of understanding. With my healthcare background, they seem to take me seriously (or so I think, haha). With my family and close friends, I have sat down with them in the past and vividly explain what IC and my other conditions are (which I have no problem doing). Luckily they have always taken an interest in learning about my various health issues.

          I have shown them many pamphlets/info from the doctor, ICN info, etc. I have also brought my husband to as many of my doctors appointments as possible so he has as much understanding as possible and can ask the doctors questions he may have directly. This has also helped. When I provided info on the IC diet to my family, they have really tried to accommodate my dietary needs at various family functions.

          This is what I've done, and hopefully it somewhat helps you. Hugs to you.
          Sarah

          Dx: IC, fibromyalgia, PFD, chronic pelvic pain, vulvodynia, endo, ovarian cysts, pelvic congestion syndrome, Vitamin B12 deficiency, hypothyroidism

          Comment


          • #6
            I am sorry jcarramu. I have had IC about the same time as you. I think some people "get it" and some never will. As long as my Husband understands and My Children all others do not matter to me. The part about Elmiron destroying your liver really scares the heck out of me!!! Is this something common? Anyone else on here have heard about this problem? I happen to be in a comfortable place right now and I feel it is the Elmiron doing it. I can't imagine going off of it. I hope I will get some feedback about this problem. Hugs, Ziggy

            Comment


            • #7
              Ziggy if you have any concerns about your liver, I suggest you ask your doctor for testing. I have not heard of anyone's liver being "destroyed" by elmiron.

              Donna
              Stay safe


              Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
              Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

              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: http://www.ic-network.com/patientlinks.html

              Sub-types https://www.ic-network.com/five-pote...markably-well/

              Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

              AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

              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

              Comment


              • #8
                I am completely with you on the fact that nobody seems to understand. I am 37 and I have told very few people about my IC. My sisters (4 of them) all know I have a "bladder problem" but only one has taken the time to look it up. Also, I have one friend who has looked it up. But even my mom hasn't really looked it up. It gets so irritating when people just assume they know whats wrong with ur bladder. Sometimes I feel like if one more person tells me to drink cranberry juice, I'm gonna snap. My kids just know I have something wrong with my bladder.
                But as far as bladder removal, I'll tell you on a bad day it doesn't seem like a bad idea but in reality do you really want a urostomy the rest of your life...prolly not. I dont think anyone should do it unless all other options are ruled out. Once its gone, its gone forever. I'm wondering if you have tried all other meds, Interstim, Botox, etc. I guess I would try everything else first. Also, make sure you have gotten a second opinion before you let anyone take your bladder out. Best of luck!

                Comment


                • #9
                  Thanks for all the support, is there a group in western Canada?

                  I want to thank all of you for your support. I do have a fabulous husband and children that understand for the most part. My kids have a hard time seeing mom in pain all the time but they are almost all grown up and they do thier own research. My biggest issue has to be my extended family and my employees. I know they are just trying to help me and for the most part I say thank you and just shrug it off. But when I am at my worst and have tried all I know to do they come up with suggestions like take vitamins or drink cranberry juice or drink more water, I want to sit down and cry...
                  I have tried DMSO installs (was allergic to something in the install), Elmiron(caused problems with my liver, which I am told can be a small percentage side effect). I now go for the hydrodistention every 6 months or so and do Urasyst installs at home but they are expensive and insurance won't cover it.
                  I seem to do really well for about 2 months after the hydro but then for 3-4 months I go crazy with the pain, the frequency, and the spasms.

                  Does anyone know if there is a support group anywhere in western Canada. I can't seem to find anyone in the area where I live that has heard of IC. I would like to meet with others and form a support group either in person or online.

                  Thanks
                  Jacquie
                  Jacquie

                  Alberta, Canada
                  Diagnosed in 2005
                  Servere Allergies

                  Comment


                  • #10
                    So sorry JC that you are in such pain. Bladder removal is of course the last resort, and maybe you should get 2nd, 3rd opinions. My hub has considered it but we are nixxing it for now. Being so young must be difficult for you, and with the little ones running around. Can't imagine. But maybe you are just in a bad flare, and tomorrow will be better.

                    As far as trying to explain it to others, it is sometimes just useless. People who love you are in denial. They just cannot accept it. So they will give you advice that you KNOW is wrong, but they are just trying to help. Giving them the info is good, but we have found that is also useless. We've had family tell Bob that he does not need the pain meds, OMG, he might become addicted! The only thing that works somewhat for us is comparing it to cancer pain. That usually quiets them down a bit.

                    Don't take it to heart, if your hub and kids get it, that's all that matters. If even one person gets it, you're good. You might want to talk with your local hospital or your uro about support groups, sometimes the nurses know more about that. Best of luck to you, and don't sweat about what others think. It only adds stress. Jill, wife of Bob

                    Comment


                    • #11
                      Bladder removed? I would definitely think long and hard before doing that. I know the pain and everything gets so bad you probably just want to rip it out yourself, but please think about other things. If Elmiron has worked for you except for the liver problems - can you find a dr who will directly install it into the bladder? Because of my sensitivities to meds and other health issues and because he does it with his other IC patients and they all have success stories - I have had Elmiron placed into the bladder directly. this way it affects the bladder but not the stomach or the liver. My problem with it is that I had a lot of pain in the urethra from the catheter but then I have multiple issues and as I jokingly told my dr, "I got lucky - had a two-for-one special"
                      There may be some validity in some nutritional ideas even though your family and friends probably don't understand the nature of IC so their suggestions (for example - cranberry juice! lol) may be off track. I am reading *** "Along the Healing Path" and "To Wake in Tears" which are two books written by an IC patient. I am trying to change some things to see if they will help... I was managing ok for a while until I had my latest flare in the summer of 2010 and have to work at going back into remission now.

                      *** (Note from ICNDonna: The ICN recommends books written by medical professionals, such as the IC Survival Guide by Robert Moldwin or Ending Female Pain by Isa Herrerra PT. The books mentioned in this posting represent one patient's opinion and are not, that we are aware of, supported by any IC research studies.)
                      Last edited by ICNDonna; 01-11-2011, 02:47 AM. Reason: Added note.

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