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    Trying to get support - of topic

    Hi all - Sorry I have not been here in a while but I have been Ill. I have a Hepatitis C that can be CURED but, I cannot get my S/O behind me. She wants more info on the drugs I am taking and other peoples reactions to them - that is fair even though I don't think it will change her mind. She is disabled and very afraid I will not be able to care for her. the side effects of the meds are heavy duty. I cannot blame her - she has it too but won't go for treatment - which brings up new issues(just now) as I will be cured and she could re-infect me. I am at a loss as to what to do. I have found some posts in a forum run by the American Liver Foundation that I hope will open her eyes. I am at a loss as to what to do -help - I know this is off topic but we live in a VERY small town so I have no one except my VA PSYC. to talk to. I also hope I am not breaking any forum rules by listing the American Liver Foundation - inspire.com, I have posted there too. - if I am I apologize in advance. I also suffer from chronic pain and have been here for years so I am hoping for some feedback.
    Blessings
    Skypilot

    #2
    Hi Skypilot/alex44,

    I don't know your situation except for this post and so anything I say is probably meaningless but you deserve a reply, seems to me--to tide you over until someone more knowledgeable replies.

    There must be some way of reaching your S/O with the information she needs to have. It sounds as if you've tried everything. Is there anyone else she will listen to--a sibling, an aunt, a pastor, someone whose opinion she respects? A doctor or nurse?

    You could try approaching that person by explaining the dilemma you're in and you might be able to persuade that person to take her aside to have a talk--?

    It's what I would do, I think.
    SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.

    Comment


      #3
      ((((((alex)))))) ~

      You're S/O is afraid that the side effects of the drugs for Hepatitis C will impair you to the extent that you'll be unable to care for her. And she doesn't want to take the drugs, because she doesn't want to suffer the side effects herself. Is that correct?

      I don't know anything really about Hepatitis C, but I would suspect that if you both go through treatment, and you are rid of it, you will both feel much better in the end. You may have issues during treatment, but if your health improves as a result, it might be worth it. I would imagine that Hep C causes you to feel lousy, and that it contributes to your chronic pain. So, if you can cure Hep C, that would mean less pain.

      Cancer patients, who go through chemotherapy experience horrible side effects, but if their cancer is conquered, they are glad they endured it.

      It's a matter of weighing risk versus benefit. What are the Pros and Cons of taking the meds, and of not taking the meds? What is the worst case scenario?

      Perhaps you could also examine the side effects of Hep C. If you don't have treatment, your health will worsen, and you won't be able to care for your S/O, if you're weakened by the Hep C.

      Have you discussed potential med side effects with your physician, as well as the concerns of your S/O? I think that is an important conversation for you to have with your doctor. Would your S/O be willing to go with you to your doctor to ask her questions and express her worries?

      Do you qualify for any state or federal in home assistance or support services? If so, you might be able to find a program, whereby you can have an aide or assistant come to your home to provide care for your S/O and/or you, during your treatment. Check the on-line site for your county's social services agency to see if there is anything offered that might help you.

      I'm sure you've done an expansive internet search on Hep C and the various treatments. But, if not, I would encourage you to gather all of the information you can.

      Is there any possibility that you could get couple's counseling through your VA?

      Those are my thoughts for now. I'm so sorry that you're dealing with this on top of your chronic pain issues. I will send healing prayers and positive energy to you and your S/O and for the best and right outcome for both of you.

      Please continue to keep us updated.

      Oh, and I'm not a moderator, but I don't think mentioning the American Liver Association forum is a violation of our TOS. We don't have a forum like that here, as far as I know.

      Love & Light,

      Rose
      Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

      Comment


        #4
        Originally posted by Earth Mother 2 Angels View Post
        ((((((alex)))))) ~

        You're S/O is afraid that the side effects of the drugs for Hepatitis C will impair you to the extent that you'll be unable to care for her. And she doesn't want to take the drugs, because she doesn't want to suffer the side effects herself. Is that correct?

        I don't know anything really about Hepatitis C, but I would suspect that if you both go through treatment, and you are rid of it, you will both feel much better in the end. You may have issues during treatment, but if your health improves as a result, it might be worth it. I would imagine that Hep C causes you to feel lousy, and that it contributes to your chronic pain. So, if you can cure Hep C, that would mean less pain.

        Cancer patients, who go through chemotherapy experience horrible side effects, but if their cancer is conquered, they are glad they endured it.

        It's a matter of weighing risk versus benefit. What are the Pros and Cons of taking the meds, and of not taking the meds? What is the worst case scenario?

        Perhaps you could also examine the side effects of Hep C. If you don't have treatment, your health will worsen, and you won't be able to care for your S/O, if you're weakened by the Hep C.

        Have you discussed potential med side effects with your physician, as well as the concerns of your S/O? I think that is an important conversation for you to have with your doctor. Would your S/O be willing to go with you to your doctor to ask her questions and express her worries?

        Do you qualify for any state or federal in home assistance or support services? If so, you might be able to find a program, whereby you can have an aide or assistant come to your home to provide care for your S/O and/or you, during your treatment. Check the on-line site for your county's social services agency to see if there is anything offered that might help you.

        I'm sure you've done an expansive internet search on Hep C and the various treatments. But, if not, I would encourage you to gather all of the information you can.

        Is there any possibility that you could get couple's counseling through your VA?

        Those are my thoughts for now. I'm so sorry that you're dealing with this on top of your chronic pain issues. I will send healing prayers and positive energy to you and your S/O and for the best and right outcome for both of you.

        Please continue to keep us updated.

        Oh, and I'm not a moderator, but I don't think mentioning the American Liver Association forum is a violation of our TOS. We don't have a forum like that here, as far as I know.

        Love & Light,

        Rose
        thank All of you for your wonerful relies
        Have to go
        Skypilot

        Comment


          #5
          I don't have any real suggestions (except pharmacists can be a great resource-maybe try to get one to explain the importance of both of you getting treatment and a realistic description of the likelihood of severe side effects from the meds), but I wanted to say I read your post. I'm sorry you are struggling. Hang in there! Best wishes.
          Kate
          Constant headache for 10 years and other chronic health issues

          Comment


            #6
            Again, thank you all - My health insurance (medicaid will pay for specific treatments, procedures as long as I get a pre-auth by a doc. I plan to go with my Medicaid as I have heard of a doc in our little patch of ? (it's really a cool place, except very small, no bank,gas station,pharmacy,etc just lots of churches, the Moose, and the county club, when it is open(for the snowbirds) to get what I i can't from the VA. Make no mistake, I love my S/O and she has since come around to supporting me 100%. it hurt a lot when at first told me she would not but I believe she was freaked out that I would do Chemo - because that is what it is. I have told her that I want to live and if(a big one) i can do the whole series, that I will be CURED of the HCV virus and my liver will not have to work so hard. I cannnot reverse the damge through drinking, (i am sober now) as in NO alcohol, which is VERY hard but then I am hard-headed and my dad raised a doer, not a tryer, i take it one day at a time - yes an AA former member, not my cup of tea. thank you all for you concern, the lack of alcahol is already making me feel better and I will be starting the Chemo tomorrow.Hope this finds everyone well and a shout out to Mark and Diandra and lil bit and earth mother of angels and to all the people here past and present that have helped me in the past and I hope I have been helpful to others, and that eveyone is doing well.
            Alex44
            Blessings
            Skypilot

            Comment


              #7
              ((((((alex)))))) ~

              That's wonderful that you and your S/O have come to an understanding about your treatment. How was your first day on chemo today? Prayers that you will not have adverse side effects and that the medications will be effective in curing your Hep C.

              Congratulations on cutting out the alcohol, and it's great that you are already feeling better for it. Drink lots of water ~ very good for flushing the liver.

              I hope that you will stop by occasionally to update us on your treatment and how your are feeling.

              Keep your faith and place your trust in your Higher Power ~

              Love & Light,

              Rose
              Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

              Comment


                #8
                Chemo For HepC 9 The Dragon)

                Originally posted by Earth Mother 2 Angels View Post
                ((((((alex)))))) ~

                That's wonderful that you and your S/O have come to an understanding about your treatment. How was your first day on chemo today? Prayers that you will not have adverse side effects and that the medications will be effective in curing your Hep C.

                Congratulations on cutting out the alcohol, and it's great that you are already feeling better for it. Drink lots of water ~ very good for flushing the liver.

                I hope that you will stop by occasionally to update us on your treatment and how your are feeling.

                Keep your faith and place your trust in your Higher Power ~

                Love & Light,

                Rose


                Rose and all the other beautiful people here - Chemo is a B****. I wil make it - seems like the sides are getting worse the longer I take it - not that long but will hang in ther for the twelve weeks. Sorry I will not be posting often - too sick - I will when I can. And yes I am leaning heavily on spirit (I am after all a spiritualist Minister (ordained) Got to go. good luck to all. BTW not drinking at all is heck - it was a part of my pain control as I am under medicated but if that what it takes to be cured, so be it. Love Ya'll
                Alex44
                Skypilot
                Last edited by alex44; 09-21-2016, 06:14 PM.

                Comment


                  #9
                  ((((((alex)))))) ~

                  Praying for you, my friend. God grant you the strength to continue with the chemo and to overcome your pain without alcohol. I will keep an eye out for your posts, should you feel like updating. Meanwhile, I lift you up and ask Spirit to protect and care for you.

                  Love & Light,

                  Rose
                  Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                  Comment


                    #10
                    Originally posted by Earth Mother 2 Angels View Post
                    ((((((alex)))))) ~

                    Praying for you, my friend. God grant you the strength to continue with the chemo and to overcome your pain without alcohol. I will keep an eye out for your posts, should you feel like updating. Meanwhile, I lift you up and ask Spirit to protect and care for you.

                    Love & Light,

                    Rose


                    Rose and everyone - I am facing a conundrum. I am taking the meds not drinking, etc. the conundrum[U]m is - I am in constant chronic pain that the VA has told me they will not increase my pain meds, I suffer and I do mean suffer, from Peripheral neuropathy , my feet are numb/or hurt one or the other all the time. my memory is fading, I do not see as well as I did before even without glass's. my balance is going, SO, it comes down to, is it worth the misery that I will go through now, none of the above will reverse, and and I will gain a few more years of misery. No I am not going to do anything stupid, I am a minister, quite religious and do not believe in taking your own life, nor do I, but I am very conflicted as to whether I want to continue this therapy. Thought's?
                    Alex44 Skypilot
                    Skypilot

                    Comment


                      #11
                      ((((((alex)))))) ~

                      I'm so sorry that the Hep C treatments are causing you unpleasant, miserable side effects.

                      I Googled Hep C and peripheral neuropathy, and I discovered that they are related. So, perhaps the misery you are enduring now will relieve the pain of PN. And that would eliminate the need for pain medication.

                      Only registered and activated users can see links., Click Here To Register...

                      "Peripheral neuropathy is the most common nervous system complication of HCV infection."

                      Only registered and activated users can see links., Click Here To Register...

                      If your PN could be relieved, then your balance would likely improve.

                      You might even find that your memory improves, as well as your vision.

                      How about discussing all of this with your physician? Ask directly whether the treatment will result in an improvement in all of these areas. Ask whether you will remain free of Hep C after you complete the treatments. Ask what you can expect to happen to you after you finish the treatments, and ask for specifics.

                      Once you have all of that information, you will be better able to determine whether you want to continue the treatments. Don't give up until you have all of the answers you need.

                      Healing, strengthening prayers on the way for you and your S/O ~

                      Love & Light,

                      Rose
                      Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                      Comment


                        #12
                        Hi all - Am now virus free (undetectable) but still have to finish another month. The S.O. are horrible, if I were ever told I had to do Chemo for cancer, I would have to think long and hard about it. Anyway S/O is on board, has been but as I said the S/E are bad, mood swings, no balance, nausea, am trying to get S/o to take it but getting it is a whole different matter. as in, Medicaid don't like to pay but I will start Monday, She's willing to take a shot at it. a recent decision, tried before but now that she is seeing the labs She wants it and should get it - I just worry about the S/E , having experienced them first hand, we will see. Thank you to everyone and I pray that all of YOU people are doing as well as you can. got to go.

                        Blessings
                        Alex44
                        Skypilot

                        Comment


                          #13
                          ((((((Alex)))))) ~

                          Great news that you're virus free! I'm so sorry that the side effects of this treatment are so bothersome, but I do hope that you feel that it has been worth it once you've completed it. I hope that your S/O will go forward with treatment and that Medicaid will cover the costs.

                          Please stop by occasionally to let us know how everything is going with you.

                          Love & Light,

                          Rose
                          Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                          Comment


                            #14
                            Hello All = I am finishing the Hep C. Treatment and it is no picnic. I am quite sure Full blown Chemo Is worse , although I don't know how. I am taking Epclusa (Generic Harvoni) and Ribavirin. The personality changes are bad enough but you throw in the physical side effects, some good, some bad. The good is I have actually grown in overall body Mass - I am stronger and fitter then I have been in a long time. of course, a lot of this can be attributed to a better diet, but some is the ribavirin, I think it is working like a human growth hormone. I AM bigger no doubt about it. Very possible since my last viral load came back undetectable, which means I am theoretically cured of the Hep. C. I won't know for sure until I get repeat blood work in six months. The downside, yes,, I am now cured (I believe) but the personality changes and the increased aches and pains from the arthritis I have throughout my body are no fun. I not been fun to be around and it has caused problems between my partner of 25 years due to the fact that I am easily aggravated and grumpy - I was NEVER like that and the fact that she got on board and supported me, God Bless her for putting up with me. the fact remains that I believe she is jealous that I got cured, I finally got through to her that she needs to see a Hepatolagist as the manufacturer will pay for the drugs but she has so much anger towards Doctors (can't say I blame her) that just getting her to get the blood work done is a challenge. I am scared of losing her either to disease or relationship issues which are big time. Sorry this is so long - Please pray for us as well...
                            Blessings
                            Alex44
                            Skypilot

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