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  • All I do is cry...I need help please.

    I can't take much more. Honestly, I can't. I am so sorry because I don't want to discourage others. I know there are so many success stories. I just can't get there. My newest VV symptoms along with mild PGAD are the last straw. I just can't. We leave for the beach tomorrow and I just cried and cried while packing. I am depressed and this disease consumes every thought I have. My mind never gets a break. I see a counselor next week. I pray several times a day. I don't know what to eat...oxalate free right now. Always trying something. I am breaking people.

    Before this disease I was so happy and positive and active. I am a teacher, a mother, and a wife. I am losing hope day by day. I have lost myself. I am a Christian, and today I told my husband to not be sad for me the day I die. I know in heaven I won't have this turmoil. I would never take my own life, but if I die at a relatively young age I will be okay with that. This side of heaven has been too hard for me.

    I apologize again for such a somber post. I know so many others have cancer and other horrible diseases. It makes me feel guilty for complaining. Forgive me my friends.

  • #2
    Re: All I do is cry...I need help please.

    Leelee, I am so sorry for your suffering. I hope that your beach vacation is in some way pleasant for you. And prayers for you that some new combination of treatment helps you find relief from your misery. Hugs to you,shorty

    Comment


    • #3
      Re: All I do is cry...I need help please.

      I hope you are going to have some relaxing time at the beach --- I know when I get to our Oregon beach, it seems like I'm in another world. Are you going where you can swim in the ocean? In Oregon it's just not safe, but when we were in Hawaii I loved being in the salt water.

      I know you've tried a lot of treatments --- have you tried keeping a detailed diary?

      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


      • #4
        Re: All I do is cry...I need help please.

        I am so sorry you are struggling so badly. You will NOT feel like this forever.
        It's very difficult to think, let alone solve the cause of your flare. Have you tried the diet?

        Comment


        • #5
          Re: All I do is cry...I need help please.

          Leelee, we have a lot in common. We are both teachers ( a teacher-counsellor) and both Christian. I know what it is like to be in your shoes. Currently, I would not be able to hold a job in the classroom. I admire you for still being able to run a classroom and have IC. That is awesome. I will pray for you. I feel going to a counsellor will be helpful. Is the counsellor Christian? It isn't necessary but I know I had lots of questions about my faith that I needed to explore in a safe place concerning this disease. Have you taken installations at all? Thinking about you and believing that God will be faithful. Hugs :-)

          Current Meds:
          1 Elmiron 100mg 3x a day
          1 Cimetidine 300mg 2x a day
          4 Gabapentin 300mg 3x a day (3600mg)
          1 - 2 Atarax 25mg at bedtime
          1 baclofen 10mg 3x a day as needed
          200mg of Pyridium 3x a day (usually do in cycles - on for a week or two as needed) - I am very careful about this.
          2 belladonna and opium suppositories as needed for pain daily.
          Bladder instillations (Lidocaine, Heparin, & Sodium Bicarbonate)

          I have tried but failed -
          lidocaine instillations, heparin instillations, oxybutynin by mouth also called ditropan, tylenol 3s with coedine, cyclobenzaphrine, Ativan, vesicare, Oxytrol patches worked for 3 to 4 years and then failed, I tried Uracyst and had some success but my urologist felt that it was not successful so we moved on to trying something else. .
          [/I]

          Comment


          • #6
            Re: All I do is cry...I need help please.

            Thank you all for answering my post. It is always comforting to hear from friends with similar experiences.

            Wizbe, thank you! I am so sorry that you are not able to teach. It is certainly hard at times. Yes, I am going to a Christian counselor this Thursday afternoon. My faith is strong, but I do question lots of things. It's hard to find the reasoning for suffering but I must remain patient and know that He is always with me. I love Jesus...through good and bad times. I will repost after my visit.

            Heading home from the beach now. I told my husband I was tired of acting stronger than I really I am.

            Oh...I see a new gyno tomorrow morning. Maybe she will have some insight.

            Warm hugs to all!!!!

            Comment


            • #7
              Re: All I do is cry...I need help please.

              Hi Leelee,

              I am a Christian also. A lot of people think God gives them this or that disease. I don't believe its true. Bad things happens to good people all the time. As a matter of fact believers and non believers have the same rate of bad things happening in their lives. If we look at it from Gods perspective we can see Sin is the direct cause of mans failure. Sin entered into mankind through one man Adam, then death through sin. Disease, death, hardships, evil and all the horrible things that happen to all of us have nothing to do with God directly punishing us. As a matter of fact God said count the cost before you take up the cross. A life following him is anything but easy.

              I have IC also. My urologist calls it painful bladder syndrome. I hate it as much as you. I will not blame God because I know we brought all this and much more on ourselves. I am not saying you blame God at all but I know some people do. What I would say is try as many things as possible to help yourself. I have many spine problems and if it weren't for that I would not have access to meds that take the edge off my pain so that I can make it through my day. I would suggest seeing a pain management dr and get something that will help you before you just give up.

              I know you can do it. We all need help and as God tells us we should love one another. If you private message me I can tell you what meds I take and what helps me. I can also tell you what doesn't work for me. I will pray for you Leelee. God loves us all and as he taught me, I love you. Let us comfort one another. May God have mercy upon us.
              dmo

              Comment


              • #8
                Re: All I do is cry...I need help please.

                Painisreal,
                Thank you for taking time to answer my post. I agree with everything you said. I never blame God for this. I honestly blame myself a lot of the time. My newest set of problems started from inserting hormonal cream that was intended to be put on externally ( my precious prescription had been internal, and the tubes looked similar). This really messed my ph up...causing BV. Prior to that (about two weeks) I had done an instillation and when I went to the bathroom to void I had the WORST urethral pain I had ever experienced. I had never had any type of vaginal or urethral symptoms...only pelvic pain and frequency type issues. These of course were bad enough. I just created the perfect storm when trying to help myself, and this caused worse distress. I have had BV off and on since. Those are two days I wish I could go back to and relive again! I have really irritated some nerves down there. And it is taking soooooo long for them to simmer down (in fact they haven't yet).

                I certainly appreciate your prayers, and I will pray for you and everyone else as well. I believe in the power of prayer. I pray earnestly among my tears, and this can be very cathartic for me.

                Also, I will send you a pm because I would love to know which meds you are on.

                Have you had any other symptoms other than ic pain or frequency?

                Comment


                • #9
                  Re: All I do is cry...I need help please.

                  Painisreal,
                  Do you have to take pain meds everyday? I am trying to not have to do this. I am trying not to rely on my Ativan as much...but I am a mess without it. Like I said...all I do is cry. I worry about everything. Especially long term side effects of all this medication. Four years ago all I took was one symthroid each morning for my thyroid. Now I feel like an addict with all my meds. Sad, but true.

                  Comment


                  • #10
                    Re: All I do is cry...I need help please.

                    Hi Leelee,

                    Yes I take pain meds everyday. I also take muscle relaxers and nerve pain meds. I used to think I did not want all these meds in my system but living in pain was worse. Who wants to spend all day in pain never doing anything fun. I used to hurt so bad I could not sit still. I would walk the floors at night. I would sleep a few hours here and there. Then I decided if I could get some relief I was going to take it. Being in pain everyday, all day is draining. Not only that it is depressing. People accuse me of being a drug addict. I tell them no I am not a drug addict. A drug addict would steal to get the money or hurt others so support their habit. I am drug dependent. I depend on these meds when necessary to help me live a life with less pain. The amount of pain meds I take varies daily. Some days I take one or two, some days three or four. It just depends how I feel that day.

                    I sent you a pm hopefully you received it. My prayers are with you.
                    dmo

                    Comment


                    • #11
                      Re: All I do is cry...I need help please.

                      Originally posted by Leelee52 View Post
                      Painisreal,
                      Do you have to take pain meds everyday? I am trying to not have to do this. I am trying not to rely on my Ativan as much...but I am a mess without it. Like I said...all I do is cry. I worry about everything. Especially long term side effects of all this medication. Four years ago all I took was one symthroid each morning for my thyroid. Now I feel like an addict with all my meds. Sad, but true.
                      It was hard for me when I had to admit that I needed full time help with pain. My pain is from nerve damage caused by surgery to remove cancer, but pain is pain! I have an implanted pain pump, plus pain meds on a daily basis, as ordered by my pain management specialist. With pain control, I am able to function reasonably --- and if/when I no longer need pain meds, my doctors will help me to wean away from them. With pain control, I have a life.

                      Warm 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


                      • #12
                        Re: All I do is cry...I need help please.

                        I agree with both of you, and certainly understand the need for daily pain medication. I take 50mg Tramadol daily, but my prayer is to be able to function without it.

                        I just returned from my gyn. She was very sweet and understanding. She said I have severe vaginal atrophy AND BV (once again). I knew this though. She doesn't want me to apply the estrogen cream vaginally for now...way too tender and inflamed. We are trying a patch and then when I start getting better we will switch to the cream. She said she thinks I am mildly depressed-lol! I told her it was more than mild depression. I go talk to someone tomorrow and I hope to find that therapeutic. This counselor deals with chronic illness patients. I admit I need the help...I can't do this alone, mentally or physically.

                        Today I am going to start an anti inflammatory diet. I have read Briza's posts and Leap of Faith's post and find them encouraging. I follow the IC diet but feel that I need something even more strict for now. I can feel the inflammation in my body. I feel so toxic, so sick, so drained.

                        Wish me luck on it! I pray that I can be disciplined. My problem is I don't enjoy cooking! I do it, but it is a chore! I wish I was one of those people who say it relaxes them, but Noooooooo!!

                        Thank you all for your kind words and your support. I need you guys, that is for sure. Hugs!

                        Comment


                        • #13
                          Re: All I do is cry...I need help please.

                          Hi Leelee and Donna,

                          I don't think it really matters why people take pain meds. I know there is a certain stigma about taking them. If taken under a drs supervision there is almost no chance of addiction. I believe if you cannot find the answer to why you are in pain or there is no option to control your pain then it is in the patients best interest to be as pain free as possible until the pain generators can be identified and resolved.

                          Please don't misunderstand me. I am not advocating taking pain meds for no reason. IC is a terrible condition. I listen day after day from those posting here and it breaks my heart they are desperate for pain relief. In the modern world we live in there is no reason for anyone to suffer needlessly. A good pain management dr is essential in control of chronic pain. I have been fighting IC as well as spine conditions which are extremely painful. I finally had a two level cervical fusion and a fracture of my T12 vertebra as well as a moderate disc herniation of L4-L5 with root nerve impingement. I suffer from osteoporosis which weakens all my bones.

                          I use pain meds as a tool to feel better and be as productive and happy as possible. I am just offering myself as a guide to what works for me so that maybe I can save one other person from the horrible pain of IC. I support those who wish to tough it out without pain meds and I am hopeful everyone here can be pain free. I will pray for us all. God have mercy upon us.
                          dmo

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