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    I have got IC. That would be correct. I have been told IBS and CFS as well. I have not been having any diarrhea lately.(good)(except what must be bowel incontinence here and there)Oh! I have got herniated disc at the L3&4 now. (bummer) I have got inner ear problem on left side.(which I go back to start exercises or some procedures on on Monday)OK. I did have major neck surgery back in March.(and got told neck was all good) Yep! I have been told it is not 100% now. Surgery was good, but there is still something not 100% below that. Anyhow, I had to change my Synthroid from .088 down to .075 as well.
    I feel like happy camper every now and then, but I just sit here and start crying sometimes, too. (and feel like a total dufus)(though I don't always know why) Hey! I am a war veteran from 1991, but I have to walk with a cane sometimes now. Yep! I don't have many days where I don't nap at some point. What a bummer! Geez! Oh! I am just 44 and never thought about having to rely on a cane. Of course, we don't know what will happen from one hour to the next. OK. Tomorrow is not promised, either. I still try to make it to church.(even with cane and having to get up to urinate again) OK. Left leg is currently bothering me. I will let that be all now.(copied and pasted from facebook) I do realize there have been several threads started by me about me by now. Most of that has been posted in one or more post. OK. I don't seem to make a good topic because I am sick and tired of being sick and tired by now.(and want to have good and interesting conversations)(and not more diagnoses, either) I don't go around advertising all of that, but I walk around with a cane sometimes. (no hiding that)Yep. I did wear my sweatshirt advertising IC yesterday, but I did not get asked about it at all. I am supposed to be having the functional capacity evaluation on the 26th. If I am feeling like I currently feel, then I will not be motivated and/or in the mood. Hey! I am being real now. My left leg is currently bothering me. I am gonna try not to have a cow now. Yep! Oh, well!

  • #2
    Good Morning, Statesboro ~
    I don't have all the problems you have but I can understand where you're coming from. Life can really get difficult with all the ailments that are constantly popping up and causing pain, emotional distress.

    I personally want to thank you for supporting our nation as a veteran and having served during war time. I love my American Freedom and without you and the other military, I'm certain this country would have fallen as many others do. So....THANK YOU so much.

    I hope your days become a little brighter somehow and that you'll be ready for your evaluation on the 26th. I know you're a Christian and from my own experience, sometimes life can just get the best of us and we are not exempt from the stress of this earthly life. As another Christian, I will pray for you that HE will help you through each day and help your medical team find some relief from your physical pain. Your strength to "keep on keeping on" is a great encouragement to many others including myself.

    You are here on the ICN because there are so many who care about each other and want to help keep us out of that trap this and other debilitating diseases can catch us in. Don't give up....keep sharing....that's what Jill created this wonderful site for and all the support team is here for.

    May this be a brighter day for you.....

    Blessings,
    Never heard of IC til suspected....Never knew so many suffer from it. Praying for a cure. I've found answers...so can you...keep the hope.

    11/2007 IC Symptoms began during recovery of surgery for bladder susp & hysto: painful/urge/freq urination up to 50 times a day, pain walking, even water hurts.
    8/2009 Susp IC; 1/2010 Treatment began; 2/2010 Diag PFD, PT, Surg remove mesh; 5/2010 Surg, 2nd bladder repair, vag vault/sm int prolapse repair, IC confirmed in surg; 7/2010 Diag Candida Esophagitis, Gastritis, Diviticulosis, Gallstones,
    8/2010 Surg gallbladder
    TREATMENTS (updated 4/15)
    IC Diet since 8/2009 (Able to vary 4/15)
    Heparin/Lidocaine/Bicarb/Kenalog Instills 1xDay
    Aloe Vera Capsules, (2) 2xDay, Loratadine 1xDay
    Pantoprazole, Prelief, Pyridium up to 3xDay, Premarin Cream 3xWeek
    *DISCONTINUED since feeling better: Celexa 10mg daily*, Fiber supp*,
    Gabapentin 12/2011 worked well *, Macrodantin 100mg after instill*, Probiotics*, PT-PFD*, Valium Vag Suppositories: Cyclo/diaz/lido, 10/5/62.5mg *
    PROB MEDS: Elavil, up to 50mg 1/2011 ret&hbp, Urelle ret, Vesicare ret

    Comment


    • #3
      Hey there, I too can totally understand how you're feeling - and to me, sometimes just stating it "out loud" really helps - and it helps even more so when it's with people how "get it" I am a firm believer in my pity parties and I encourage everyone to embrace them, lol. But, I use mine as a tool - I have a limited amount of time I am allowed to just break down and wallow for awhile - and for me, it helps get the negative out of me and I can pick myself back up and start fresh.

      Oh if you can you should get yourself a fancy cane/walking stick - they can be very distinguishing --- just look at John Steed in the old tv show "The Avengers", lol. I know silly - but sometimes it's all we've got.

      Hugs,
      Tracey
      Hugs,
      Tracey
      How do you eat an elephant? One bite at a time...

      Harry arrived 2/23/09!



      *IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

      IC Diet Cheat Sheet:
      http://www.ic-network.com/diet/2009icdietlist.pdf



      Dx's:
      IC dx'd Nov 2004
      Lymphocytic Colitis dx'd July 2005
      Possible IBS
      Current IC Meds
      Vistaril 25mg in the evening
      Previous IC Meds taken:
      Cystoprotek - 2 caps 2x's a day
      Elmiron, 100mg 3x's a day
      Ditropan, 5 mg 3x's a day
      Others:
      Wellbutrin 150mg 2x's a day for Anxiety/IBS
      Pepcid 40mg a day for GERD
      Zytrec for Nasal Allergies
      Align Probiotic daily for IBS

      Comment


      • #4
        Hi, Statesboro ~ Just checking in to see how you're doing today. Sure hope things are looking up a little.

        I love Tracey's idea of the fancy walking stick. Nowadays everything is certainly looked upon differently and with more acceptance and if you need the cane, by all means use it and walk proudly.

        Some times, especially when so much is going "wrong" with our bodies, we need to just take those "baby steps" as we work toward bettering our health.

        You're a wonderful person, supportive of so many, and it's your turn to be lifted up by others now.

        Blessings,
        Never heard of IC til suspected....Never knew so many suffer from it. Praying for a cure. I've found answers...so can you...keep the hope.

        11/2007 IC Symptoms began during recovery of surgery for bladder susp & hysto: painful/urge/freq urination up to 50 times a day, pain walking, even water hurts.
        8/2009 Susp IC; 1/2010 Treatment began; 2/2010 Diag PFD, PT, Surg remove mesh; 5/2010 Surg, 2nd bladder repair, vag vault/sm int prolapse repair, IC confirmed in surg; 7/2010 Diag Candida Esophagitis, Gastritis, Diviticulosis, Gallstones,
        8/2010 Surg gallbladder
        TREATMENTS (updated 4/15)
        IC Diet since 8/2009 (Able to vary 4/15)
        Heparin/Lidocaine/Bicarb/Kenalog Instills 1xDay
        Aloe Vera Capsules, (2) 2xDay, Loratadine 1xDay
        Pantoprazole, Prelief, Pyridium up to 3xDay, Premarin Cream 3xWeek
        *DISCONTINUED since feeling better: Celexa 10mg daily*, Fiber supp*,
        Gabapentin 12/2011 worked well *, Macrodantin 100mg after instill*, Probiotics*, PT-PFD*, Valium Vag Suppositories: Cyclo/diaz/lido, 10/5/62.5mg *
        PROB MEDS: Elavil, up to 50mg 1/2011 ret&hbp, Urelle ret, Vesicare ret

        Comment


        • #5
          I had to use a cane after I badly sprained an ankle and had a cast. I concentrated on learning to walk normally with the cane --- when I got to put it away, I really missed having it.

          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


          • #6
            Hi Stateboro,
            I know you are going though such a hard time. I am 44 too and was also in the military. What branch of service were you in? I really understand that it is so difficult. I also want to be here to let you know you can drop in to yell, talk, vent etc. We all need to be able to do that - especially when people who should care about us sure don't always show it. Sometimes I wonder if anyone gets it. But, then I look at this web-site and see so many great people who want to help and really do understand.
            Teresa

            We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

            Comment


            • #7
              Ic

              Things happen to all of us we may not understand now, but maybe one day we will. Maybe we get more closer to God. I hope and pray that your problems will be lifted from you. God Bless You.
              <center>
              <a href="http://s1086.photobucket.com/albums/j441/linda5552/?action=view&amp;current=Picture005.jpg" target="_blank"><img src="http://i1086.photobucket.com/albums/j441/linda5552/th_Picture005.jpg" border="0" alt="Photobucket" ></a>
              </center>

              Comment


              • #8
                We did go down to Garden City for me to have the functional capacity evaluation.(all 55 miles) Yep! I did check pain level of 3 at the beginning. OK. I did not enjoy it all too much. I must have left with pain of 6. OK. I showed up with a cane, but I had to walk up and down and back and forth without it. Of course, she did put one of those belts around me to catch me every time that I started to fall.(and got to where I was barely standing up)Also, I had to do some lifting. (painful for me) Oh! I had to answer questions about my past year medical history at first.(as I went on medical leave last January)She thinks that the results will be sent to the neurosurgeon on Friday. By the way, she could tell my pain level went up. She could tell my walking got worse. My shoulders are hurting to where I just feel like barfing right now.(and muscle fatigue in my legs now) Yep!

                Comment


                • #9
                  States

                  I'm SO sorry for your pain. When I was pregnant with my 2nd child I herniated my disc between L3 L4. I KNOW that pain. I can recognize it in people when I see someone out in a store walking like I walked. I had surgery when my daughter was 8 months old and I walked with a cane for months (can't remember how long, and I still have the cane). But after the PT and lots of rehab my back is now the least of my worries. I'm sorry that you have to deal with so much at one time. I can only imagine how hard it is. Hopefully your neuro will have a treatment for you that will at least help that one part. They are doing lots of "micro-surgery" now that is supposed to be really good, much better than the old methods.
                  And you are not alone in your tears. I used to watch TV and cry when I saw someone just ~get up~ out of a chair, when for me, that was an ordeal. I hope only the best for you and hope you will keep us posted.
                  Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
                  Lexapro-20 mg
                  Aciphex
                  Ambien-as needed
                  Percocet-7.5 up to 3 per day as needed
                  Valium-10 mg x2 per day
                  Phenergan-1 at night
                  Prelief w/everything
                  Now recovering from acute pancreatitis

                  Currents treatments that help somewhat:
                  Heating pad
                  Hot baths
                  Ice
                  Being VERY still while lying down with legs elevated

                  Comment


                  • #10
                    Statesboro,

                    It sounds like you had a very rough day. Do you have family that can help you through this it all?
                    Teresa

                    We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

                    Comment


                    • #11
                      Hey States, hope you are feeling better these days. It really stinks sometimes, doesn't it? I'm sure some days you just want to sit there and be afraid to move anything because it will hurt. But you know what, there are those good days when you feel like you can conquer the world, so, it is always something to look forward to. Those back issues, some folks just don't understand how much it hurts, on top of the IC. Bob does not have back problems, but I have arthritis in my back. So we kinda cover for each other. I do what he can't and vice-versa. We are a four armed octopus team, although he can't lift much from the IC, it hurts him, and I overdo, but we manage. Fortunately we can have a down day here and there and relax those bones and organs. Pacing yourself is important, don't overdo, and what the heck is wrong with a cane anyway? There are some cool ones out there and maybe you could make that a hobby, whittling some? Could be some money there! Hope you are feeling better (my bro was in Nam 1969-1971 in Da Nang Marines) so know where you're coming from there. Take care of yourself, and take it easy when you have to. Jill, wife of Bob

                      Comment


                      • #12
                        I reckon I will post more about me. I was walking withouth the cane yesterday. OK. My left leg does not feel good now. I woke up with the squirts as well. I have got sinus trouble out the ying-yang. I did not take any pain reliever yesterday.(and no rubdown) OK. I have got pain up to my eyeballs now.

                        Comment


                        • #13
                          states, Hoping you feel better soon!! You will be in my prayers.

                          Comment


                          • #14
                            I thought I had been told I had gotten a herniated disc, but I have been told it's actually degenerative disc disease. That should make it even harder to go back to working as a custodian again. Oh! I actually read a copy of the report on my functional capacity evaluation. By the way, I may have done worse than I actually thought.(which I know I screwed up) It did take 88 seconds to put all the pegs in the holes with my right hand. OK. She did state it should not have taken over 65 seconds. Hey! My grip strength was off more than that. Oh, yeah! She noted that I did perform the squats, but my legs did bother me on other tasks.(and called it a contradiction)(if I am not mistaking) (and even put possible exaggeration in the closing part) Yeah, right! She even stated I could have a sedentary job only.(or none since I won't be getting a desk job anywhere)(most likely)(and not trying to) OK. Reading the report did not make me a happy camper or feel like a winner at all.

                            Comment


                            • #15
                              statesboro,
                              You should not worry about what one person writes about you. She doesn't know everything and she doesn't have to live in your body. You do, and you know how you feel. I pray that you start feeling better. Did they at least give you any recommendations as to what do for your back?
                              Teresa

                              We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

                              Comment

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