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I'm going to live my life, no matter what!!!

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  • #1

    I'm going to live my life, no matter what!!!

    I think I posted this basic premise on another thread but I'm putting it here in the Happiness Corner because happiness is what I'm striving for. After I got out of the hospital a couple of weeks ago for pancreatitis I had a realization that my life was passing me by. I've come to accept that my bladder/urethra are going to hurt pretty much no matter what I do. So since I've been feeling a little stronger everyday from the pancreatitis, I've decided that I really need to make a concerted effort to be a participant in my life (which I really haven't done since I was dx'd)
    So along those lines I'm doing more (a little bit) everyday. And my husband and I have decided to make some long term plans (mid May) to go on a vacation in the carribean, just the 2 of us. He knows that sex will probably be a no go, but we both want to go and we always have SO much fun together. Even though I think traveling will be hard, IC is hard anyway!! I might as well enjoy where I am while going thru it.
    I will continue to seek treatment and hope for remission (which I've never had) and hopefully I will find something that at least helps.
    This is the first time since I was dx'd that I feel hopeful. And it doesn't have anything to do with any treatment, drug or doctor. I think it has to do with the fact that if this never gets gets any better, what am I going to do? Well, I'm not going to die, I'm going to keep on living and try to put myself in the best mental and physical place possible. It's the only thing I can do.
    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
    Tags: None
  • #2
    I am glad to see you take this view. It is healthy! With IC it is an ongoing work in progress. Most of us do find things that work for us. Treatments may change and we try something else to see if it helps better.

    You have to live and do your best to enjoy life! Enjoy your trip!
    Jolene

    "Life is what happens when you are making other plans" John Lennon

    IC diet cheat sheet....http://www.ic-network.com/diet/dietcheatsheet.html

    Information for Patients can be found here.
    http://www.ic-network.com/patientlinks.html


    Jen's tips for great IC sex..http://www.ic-network.com/forum/showthread.php?t=22522&highlight=jens+tips[/url]




    Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]

    "IC Angel 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."

    Comment

    • #3
      I congratulate you! Some years ago I also made the decision that I would not allow IC to rule my life. It really helped my outlook.

      I am very fortunate that I have found treatment options that work well for me --- I hope you will also get there very soon.

      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

      • #4
        living my life

        Katie,
        I think that's wonderful, and an inspiration.
        I've been hiding out for ages, but after reading your post, which makes so much sense, I think I am going to try and get back out there, a little at a time.
        Thanks for sharing.
        Have fun!
        Laurie

        Comment

        • #5
          Originally posted by bubbe1 View Post
          Katie,
          I think that's wonderful, and an inspiration.
          I've been hiding out for ages, but after reading your post, which makes so much sense, I think I am going to try and get back out there, a little at a time.
          Thanks for sharing.
          Have fun!
          Laurie
          You GO Laurie!! I can only do a little at a time. But that's ok because that's the way it is!! I can only do as much as I can do!! Today I'm going to lunch with a girlfriend. And I've come to realize that even though she's probably my best friend, she doesn't understand IC and (I just learned this, she's never even had a bladder infection!!). So when I talk about IC I might as well be speaking a foreign language. I've decided that maybe I've been expecting way too much from my friends and family. This is a battle that I'm not sure you can understand unless you go thru it!! Although I have so much support from my husband, I need to learn to rely on myself also. And I came to the realization that I had become way too dependent on other people to take care of my needs. Now I've decided that even though I'm in pain I can still do SOME things for myself. And until I'm stronger, I know I will need help. But I'm really happy about trying to do as much as I can. And if I'm doing what I can, I don't have a problem asking for help.
          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

          • #6
            Katie,
            Have a great time out at lunch with your friend today! And I agree that they don't usually "get it". I have quit talking about it unless they specifically ask and then I'll tell them about starting elmiron or whatever. One of them asks me about the diet but she also has never even had a uti in her life, hard to believe!
            Cindi


            Gelnique for frequency/urgency - works great
            Macrobid after sex
            Prilosec, continuous birth control pills
            synthroid .088mg, mucinex-d, restasis

            Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

            Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

            IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
            AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
            AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
            Great treatment flowchart on page 19 of the pdf

            Comment

            • #7
              I went to lunch and actually had a good time!!!

              Originally posted by cmclien View Post
              Katie,
              Have a great time out at lunch with your friend today! And I agree that they don't usually "get it". I have quit talking about it unless they specifically ask and then I'll tell them about starting elmiron or whatever. One of them asks me about the diet but she also has never even had a uti in her life, hard to believe!
              It was NOT pain free and I had to go pee 5 times before during and after we ate. But, we laughed and we gossiped and she asked some questions about IC and I answered them with as much explanation as I thought she needed or could understand. And then we were off talking about something else!! This is a whole new frame of mind for me and it's going to take some getting used to. Because frankly, when I'm in constant pain from my bladder, (which I am) thats all i want to talk about, because its all i can THINK about!! But I did everything I could to insure my success. She drove, so I could take my pain meds. I took Azo and I took along my "truck-stop ass pillow" (I bought the LAST pillow at a truck-stop on the way home from Austin last spring with my hubby, hence the name). All in all I call it a success, and I've decided that since I'm going to be in pain anyway, I would much rather take my chances at having a nice lunch with a friend than hiding myself away with my Tivo. I'm tired of being alone, and I realized today that even if my friends can't possibly understand what IC is or feels like, I miss them and it won't be so long before we do it again!! I hope everyone has a great day that's as pain free as possible!!
              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

              • #8
                I went to lunch and had a good time

                Katie, that's great! I hope many more fun lunches are in your future!
                Laurie

                Comment

                • #9
                  Originally posted by bubbe1 View Post
                  Katie, that's great! I hope many more fun lunches are in your future!
                  Laurie
                  Thank you SO much for the support Laurie!! Just so yo know, I'm in your corner too!!!
                  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
                    Katie,
                    Congrats,you go girl!I'm shedding happy tears for you after reading this post.I've decided to stop my negative thought patterns and stop letting IC be in control of me.I'm going to be proactive and me be in control of the IC.I'm going to eliminate negative,toxic people from my life (this includes family members) because I can't allow myself to stress.I'm going to surround myself with friends and people who I know truly care about me IC or not.I also want to live my life like I wasn't sick.I want to work,part time even if it pains me to do so because I hate sitting at home all alone wallowing in my IC sadness.I want to swim,take long walks again.I have to be responsible for myself and my happiness.I'm going to stick to the IC diet but not be overly obsessed about it because that in turn makes me scared to eat anything.I'm going to look into physical therapy and pain management.One thing that is good about the IC is it is forcing me to reevaluate my life goals and what I need to do to be truly happy mentally.
                    Newly IC diagnosed as of February 2011.

                    Medications I'm on that seem to work:
                    Zoloft- one once a day
                    Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

                    Failed Meds:
                    Elmiron-after 4 months,digestive side effects got to be too much
                    tramadol-allergic
                    DMSO treatments(5-6)
                    probiotics

                    THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
                    AROMATHERAPY-candles,incense
                    Village Naturals Aches and Pains Peppermint Bath Salts
                    Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

                    ACUPUNCTURE/HERBS
                    Significant pain relief so far.

                    MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
                    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                    ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

                    Add me on facebook Angela Hasic

                    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                    Lord, make me an instrument of your peace;
                    where there is hatred, let me sow love;
                    when there is injury, pardon;
                    where there is doubt, faith;
                    where there is despair, hope;
                    where there is darkness, light;
                    and where there is sadness, joy.
                    Grant that I may not so much seek
                    to be consoled as to console;
                    to be understood, as to understand,
                    to be loved as to love;
                    for it is in giving that we receive,
                    it is in pardoning that we are pardoned,
                    and it is in dying [to ourselves] that we are born to eternal life.

                    Comment

                    • #11
                      Katie...You GO GIRL!!!!!!!!!!!!!!!!!!!!
                      I'm Perfectly Imperfect and Praying for Remission

                      Comment

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