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  • #16
    Carob is fine in a shake --- now if I can just find some extremely low carb ice cream.....
    I would even love a vanilla shake right now. I just had my quarterly diabetes test and I'm up a little, but still okay --- I just might splurge just once.

    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


    • #17
      Breyers has a low carb vanilla. It has splenda in it. Not sure if that's allowed.
      Frances

      Diagnosed: 2011 - have had symptoms for over 20 years. Diagnoses so far: Overactive Bladder, then IC, and now Myofacial Pelvic Pain Syndrome.

      Medicines: For IC am doing PT, and will be taking Gabapentin, Ativan, Tramadol and Ambien. Ice packs and drinking vanilla shakes help. Foods that cause a flare, tomatoes, yogurt, coffee, soda, all sports drinks, and most teas. Take Verapamil, Naproxen (as needed), Omeprazole, Frova (as needed) and receive Botox shots(every three months) for migraines. For allergies I use Claritin and Flonase. (Feel free to ask me any questions about meds.)

      Other conditions: Migraines, allergies, mild IBS.


      "If you believe, you will receive whatever you ask for in prayer." (Matthew 21:22)

      Comment


      • #18
        I use lots of things with Splenda.

        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


        • #19
          I like Splenda also, Donna. Have you tried Truvia? A lot of IC patients have told me that they can eat that too. I wonder if we could even add those two ingredients to the middle column of the IC Food list. What do you think?
          Julie Beyer, MA, RDN
          IC Dietitian, Patient Advocate, Speaker, & Author


          Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

          Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

          You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

          ........ ........


          Other IC Diet Resources:

          IC Diet Webinar
          IC Diet Website
          For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
          Free IC Diet Booklet: What Can I Eat?
          Confident Choices IC Diet Blog
          IC Diet Newsletter


          *Let's Connect!*

          Comment


          • #20
            I haven't tried Truvia --- I've been happy with Splenda --- and it goes very well with my diabetes. I've even been enjoying some blackberry and blueberry desserts.

            I will be happy to give Truvia a try --- and it would be great to be able to add at least one low carb sweetener to the try it list.

            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


            • #21
              I am angry every day. I cry every day. I mourn the loss of my normal 30 year old life that has been exchanged for the life of my 90 year old grandmother, only she can eat whatever she wants=( I pop pills, suffer in silence, my husband and I do not have sex very often and if we do it isn't fun for either of us. I go to work and cry in the bathroom during homeroom and my plan period because the pain is so bad. My birthday is next week and I can't eat cake or go out to dinner and enjoy a nice meal. Holidays this year are making me upset. I host Thanksgiving and fortunately most Thanksgiving foods if prepared from scratch are IC friendly except for cranberry sauce which I am allergic to anyways. My husband doesn't get it, my friends don't get it and the only one who is a little sympathetic is my mother and even she says to just suck it up and to learn to love vanilla and plain chicken and all kinds of other foods I would never eat if I could have real food. I feel like I'm on the same diet as my dog. Same food and water every day of my life. I see a therapist for my anxiety and my depression that has stemmed from this and it makes me feel better for about two hours. I leave there feeling optimistic, but as soon as I get home reality settles back in. I hate to cook and that's all i've been doing lately trying to figure out what i can eat. I have a medication schedule, a schedule for urination, a schedule for bladder treatments and physical therapy. There is not one day I don't have some sort of doc apt after work and I can't even begin to decribe how much I hate waiting in those stupid waiting rooms. I have to pay someone to clean my house because I just don't have the energy to do it nor do I care what it looks like anymore. I dread having to go out with friends or god forbid go to anyone's house that is serving food where I feel ridiculous for bringing my own little cartons of "safe" food and then have everyone ask me a million questions that I don't feel like answering because no matter what I say they won't understand. I'm just tired. Tired of it all. People say IC isn't your life, but it is. It is my every waking moment. I think about the pain, the meds, the food all day long it affects my social life, my diet, my relationship with my husband and my family. I can't even go to the gym and work off all the stupid carbs I'm eating because all I can have are high fat foods like meat and cheese and bread and milk. Did I mention I hate to cook??? I think we are all angry and we have every right to be. I do not want to have a cronic disease and at a certain point this whole diet thing will get old and I will give up and give in to my intense cravings for coffee and chocolate and just use a lot of pain meds to manage the pain because really that's so much easier. Seeing a therapist does not help the cravings, it doesn't help other people understand my pain and it doesn't make my life any easier. In fact all it does is cost me time and money so I think I might quit. I hope you feel better. Do what is right for you. It might help it might not. Good luck and sorry for my rant, but that did make me feel better if only for a few minutes.

              Comment


              • #22
                Hum, I hear you. I, myself am a person in denial. I went off all meds thinking I was all good and 3 months later, bam. HUGE FLARE! I just went through this 6 months ago and here I start again. I'm acting strong to the kids and hubby because last time I was a complete wreck. I mean, I laid in bed for weeks and lost 20lbs because I was so distraught. I don't even want to tell my friends that its back. But I seriously have gained 60lbs from amitriptyline in 5 years! So I have to be fat to feel normal? Not cool! I'm mad as heck. I want to have sex with my husband without freaking out. I want to find a doctor that can see me the next day and isn't 4 hours away for goodness sake! I want to find a pill that I can take to get me thru this flare until the meds kick in. This is BS! I can't even afford a dang therapist! Ugh!!!!
                symptoms when in a flare:

                I feel everything in my urethra but I know its really my bladder. Pressure, stinging, urgency,tingling feeling thats hard to describe.
                *I have a fibroid on my uterus near my bladder.

                Medication
                100mg Amitripyline ( I have seriously gained almost 50lbs on this drug but I feel it works)
                Flexoril 10mg (doesn't work)
                Hydrocodone 5/325 PRN
                Cetalopram 40mg *severe anxiety over flare

                Physical therapy hasnt really helped but I love her! I've learned so much! She states that my muscles around
                My urethra are very tight.

                currently seeing a Gyn in my town and a Uro in Seattle (4 hrs away)

                I have had lots of long term remissions. Currently been struggling with good & bad days since Jan 2012



                find me on Facebook! Brandy Schildknecht Covington

                Comment


                • #23
                  I hear what you are saying and I know what you mean, please believe me when I tell you this, I have had IC all my live to some degree or another and everytime I get it figured out I get diagnosed with something else to figure out how to deal with.

                  With all of them them with time, patients, trial and error and a lot of work it does get better.

                  Life will be worth living again, it may not be the same, but worth living.

                  Good luck and better days to you all
                  My are with you all. May you all find a way to peace and joy in your lives.

                  Comment


                  • #24
                    I was just told that I have IC, and at times I feel like "Naw, I dont have it" then I noticed I a lot of different things with me that the others I work with dont do what I have to do. I have to change my entire diet plan now, and I used to eat all the things that I guess I can't eat anymore, unless I want to to deal with them pain. I love to have caffine and drink soda, I can't even do that now. I am 21 yrs old and I dont want to deal with this and I only found out I have IC since the 23rd of OCT. I am depressed, angry, and just want to stop. This pain, the looking out what I eat and the pills. :'(

                    Comment


                    • #25
                      Humducky I identify with everything you said! IC affects our whole lives. I believe I was in denial about my IC for a few months. Then I got angry then I gave in and drank a soda or ate chocolate and paid for it immensely. Then it turned into depression. Depression over the so called treatments that hurt more than help, over the lack of pleasure from food or sex, not being able to work out, the horrific pain that I feel when I wake up with a full bladder, not being able to sleep a full night since this all started. I find myself looking at other women and becoming jealous. Jealous of all the things they can do that I can't and that sometimes they seem not to appreciate any of it. Ofcourse I always say to myself you have no right to be so unhappy you aren't dieing you don't have cancer. I think sometimes we just need to vent this stuff anyway and then get back up and keep on living.
                      Hello! I'm a 28yr old female with fibro and IC. Diagnosed by hydrodistention in July 2012..pain and urgency since March 2012
                      Recently diagnosed with pelvic floor dysfunction 2013.
                      Current meds: Zoloft, Lo Estrin BC, hydroxyzine,soma, Norco, nuerontin , pyridium as needed.
                      Supplements: , DH Magnesium, Acidophilus, Omega 3,Multiright.
                      Failed: Elmiron caused burning, Lyrica caused dizziness and weight gain, Elmiron, Lidocaine, and sodium bicarb instills caused extreme burning.
                      Books and Dvds: New Dawn Pilates, Along the Healing Path by Catherine S., Painful Bladder Syndrome by Philip Weeks.

                      Comment


                      • #26
                        Carob can be mixed with most things. It's a little hard to dissolve, but if you use a blender or food prodessor it works pretty well. It can also be stirred well in warm liquid, then chilled to add ice cream.

                        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


                        • #27
                          Humducky... sending healing wishes and hugs your way girl!!! Are you seeing any improvement in your symptoms??
                          Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

                          Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

                          Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.






                          Comment


                          • #28
                            I get angry everytime I have to pee now!
                            Current Medications:

                            25mg of Amitriptyline.
                            I tried the vesicare and it SUCKS. ZERO improvement with Cephalexin.


                            Comment


                            • #29
                              Yes I understand too. My mom doesn't get it. Why do you have so many problems. I hate that. It ****** me off! I have IC, VV, PFD, Depression, Etc...Etc and I have been in the hostipal more times then I can count! If I had to pick between my depression and my IC, I would totally pick my depression. Because at least with depression I can get out and be around people and not be on any kind of special diet. I miss bike riding, swimming, running all those things that make me happy. I mean I do yoga and acupuncture. Its ok but it wouldn't be my first choice. I hate being on meds, And the thought of catheterizing Scaries me half to death! And I'm learning that Next week! Yuk Yuk Yuk! I Hate This Disease! Hate It! Why Us! It has turned my life upside down! I get so depressed and cry!

                              Comment


                              • #30
                                Angry??? Hell yes!!! I have been at this a long time and I am just worn out sometimes. I work in neuro rehab and I see so many people struggling harder than I am so I try really really hard to keep things in perspective to not think all worst case scenario sorry for myself and sometimes I do well. I try to focus on my God and my faith and believe that He will carry me through. But sometimes, more oftne than not lately, I am MAD AS HELL!! I am angry. I am angry at how this has affected my husband, my kids and my life, my body. I hate the pills, the diet, the weight gain from the meds, the constant Dr apts from various other pelvic issues. I get overwhelmed with fear and anger thinking that this is my life and I am not even quite 30 yet. NOBODY gets it. I have tried to explain it to some people but nobody gets it and they end up saying the wrong thing and I end up ****** bc I have a short fuse because I have been in pain for so long and because it is such a personal issue its hard to tell a lot of people so I suffer alone. a lot. So, do I get angry? Yeah, I do.
                                Diagnosed with IC 2008 via in office cystoscopy and symptoms

                                Current treatments:
                                -At home rescue instillations as needed
                                - IC diet
                                - Meds for IC: Vistaril (I have tried a TON but discontinued all but the Vistaril)

                                Other diagnosis - Urethral Syndrome, Vulvodynia, PFD, Pelvic Congestion Syndrome, Pudendal Neuralgia (Clitoral Branch)

                                Boston Scientific Spinal Cord Stimulator Implanted July 31, 2013

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