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  • Anger?

    Has anyone gone through a very angry period when you were told about your IC/PBS? Even though I have been doing really well for a good while now I noticed that I'm getting quite angry that I have to deal with the fact that I was diagnosed with a chronic condition. I'm tired of checking food ingredients, tired of making sure I take the right supplements, tired of even thinking about it. Has anyone gone to counseling, and has it helped? I keep active, walk, meditate, do my relaxation exercises, and I still feel angry about it all. I almost feel like I'm having a delayed reaction from when I was initially diagnosed even though I'm doing really well right now. I'm I the only one who just gets po'd about it all?

  • #2
    I am having a hard week too. Just 2 months ago I was a normal woman. Then like my life pretty much got put on hold with IC. I am tired of being on a pill schedule like an 80 year old woman. I am tired of craving something and I can't even have a BITE of it. I am tired of using all my money to buy meds instead of something exciting. I am mad but I don't even know who to be mad at. God?

    I know we should be thankful that were are alive and on a diet that is less restricted than some. But that's something that ****** me off too this week. I am tired of being thankful for a crappy disease.

    I am mad that my choices in life are to have massive debilitating flares or enjoy the things in life that made me happy. I am not a stress eater but my one Red Bull a day really made me happy to go to work. Now I dread it because when I get to have before work is Elmiron.

    I needed to vent too.

    I was thinking of talking to a professional but at this point I think I'd just me mad and unreceptive towards her. Unless she has IC she wouldn't get it.

    Maybe this week I was just meant not to be thankful.

    Comment


    • #3
      I thought the same thing. Who knows what would come out of my mouth right now if I talked to a counselor. I hate this condition, I hate the foods, I hate it all! Ha Ha I'm afraid I would scare the heck out of them and they would run for the door.

      Comment


      • #4
        Perhaps there is pressure to feel that you have to be looking on the bright side of things, when in fact, clearly, things haven't been so bright. It may not be a bad idea to see a counselor just to blow off steam and have someone to confide in. I think most would be sympathetic and try to be understanding. You could try it a couple times and then leave if it didn't help. A lot of times counselors hear about things they themselves haven't dealth with, yet many have the skills, and especially the empathy and compassion to help you. (I'm not a counselor by the way...LOL...but I did have a great one at one time who helped me tremendously with things he didn't even understand)

        You know what, if this condition was like other conditions, like diabetes or seizure disorders, or something of the like, people would take our complaints more seriously. The fact is that it's not a well understood condition and that is what makes it hard. Think about it... if a diabetic said they cannot eat certain foods because there is risk of a seizure, you bet everyone around them would make sure they didn't have that risky food. But for us, people just cannot believe the diet thing because they can't even believe the IC thing. (well at least that's my experience)

        I'm not sure I helped... HUGS!
        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


        • #5
          Thanks Toto. Yes I'm sure it would be a good idea to see a counselor to get help with dealing with the anger. It's difficult finding one who understands the possible ups and downs and how unpredictable this condition can be. I was reading on the ICA site about how we can go through the exact same emotions as someone who is in grief over a loss, and one emotion that comes up is anger. I'm sure there are counselors out there who could help but I sure would like to find one that really knows what we go through emotionally. A friend of mine still asks me "Well is your bladder problem all gone now?" She still doesn't get it. If I told her I had diabetes she would know that once you have it you have it and will need to manage it.

          Comment


          • #6
            I'm sorry about your friend saying that. I'm guessing she just has no idea. It's funny, when I tell someone about my condition (and I only do this in emergency cases where I have to use a bathroom frequently and when it draws attention), I found that if I say that my bladder was changed after pregnancy, then some people understand more. Now go figure! Of course not everyone can say that. But I'm trying now to think of a way to discuss this so that people will have sympathy and not just think it's a matter of peeing! Some guys have enlarged prostrates and even that is more easy to understand than saying IC.

            It would be awesome to have a counselor with IC who really understands. I too would love that. In college, during my undergrad, I had this great professor who unfortunately was suffering from a serious illness. He said he went through a real rough time after diagnosis and that he suffered a lot emotionally for quite a while, even though it was somewhat manageable. He has to make major life adjustments physically, mentally, etc. He too had to change his eating habits. All those changes are tough! The stress certainly can take it's toll.

            A hard thing for me is explaining why I am on a special diet. People just don't get it and there is no way to explain it simply. Sometimes I just say I have food allergies. People don't even question that!!! The worst is when I'm stuck in a movie or other place around people and have to get up every 10 to 15 min. Sometimes I cause myself severe suffering just so I can make it to 20 min., so that it doesn't seem like such a short amount of time went by. Crazy huh?
            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


            • #7
              Stages of Grief/Acceptance

              The title of your post caught my eye. I often think that people diagnosed with a chronic illness go through the same stages of grief/acceptance that people do who are told they are dying. Anger is a part of getting well....in fact, if you think about using the energy of your anger productively, it can lead to you having more control over your disease. I wrote a blog article about this awhile back:

              http://interstitial-cystitis-diet.bl...c-illness.html

              I was just diagnosed with something new (grrrr) and I am going through this all over again....

              Hope you feel better soon.........J
              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


              • #8
                Toto- Yes if we had a prostate it would be easier to explain. Not that we would really want to but at least people would get it. I find myself apologizing in restaurants telling the waitress I'm not really fussy I just have diet restrictions when they start rolling their eyes at my questions regarding the food.

                Julie- Thanks for your info regarding your blog. I will read it. Sorry to hear you have been diagnosed with something new.

                Comment


                • #9
                  I just had my first bad flare since diagnosis tonight when I went to go lay down and relax before bed. I can't believe I stressed myself in to a flare. Ugh. It doesn't help that my period is late. I wish it would come and get over with. Stupid hormones. I need to learn how to cope with triggers that come from when my IC was at its worse. Like I was in my room with a candle on playing a video game when the flare hit. Now I will dread doing that ever again. This week hates me.

                  Comment


                  • #10
                    I think that the more counselors heard about this, the more they would understand it. If we could possibly get them to go to this web site and read about it, they could get a grasp of it IF they were willling to take the few minutes to do so.

                    I was so angry yesterday, it comes and goes, and I told my husband how it's so much harder than being diabetic or something like that because at least people would GET it. Then he added that THAT's not even the same, because a diabetic can eat the foods they want and take a shot for it. I'm so grateful that he gets it. What a tremendous support. I think it is very normal to be angry... a lot.
                    treatment:
                    -I follow the IC diet to the letter
                    -acupuncture and chinese herbs
                    -Prelief
                    -UTA
                    -instillations as needed
                    -beginning yoga and specialized yoga for breathing and relaxation
                    -Wellbutrin
                    -Klonopin


                    main symptoms: pain and burning

                    Comment


                    • #11
                      penneyjo, your husband isn't correct about a diabetic eating the foods they want. I am diabetic along with having IC and I'm not sure which diet is the most challenging. Diabetics who have the mistaken idea that they can eat anything and shoot insulin are the ones who end up losing legs, eyesight, and even their lives.

                      Here's what I would love to have --- a chocolate milkshake! If my IC would allow the chocolate, my diabetes would put the kabosh on the rest.

                      It's okay to be angry at times if we don't let the anger take over our lives.

                      Huge 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
                        Donna,

                        I'm sorry if that sounded insensitive. I think my husband was just trying to make me feel better, and I don't think that eating whatever they want is what he would recommend on a regular basis or even at all. His father is diabetic. I used to have an aunt who would eat a big piece of cake and then take a shot in her leg. We all thought it was awful for her to do that.

                        Again, I apologize.
                        Penney
                        treatment:
                        -I follow the IC diet to the letter
                        -acupuncture and chinese herbs
                        -Prelief
                        -UTA
                        -instillations as needed
                        -beginning yoga and specialized yoga for breathing and relaxation
                        -Wellbutrin
                        -Klonopin


                        main symptoms: pain and burning

                        Comment


                        • #13
                          Julie... So sorry to hear you are now dealing with another illness. How awful!

                          Andrea... That really stinks you got a sudden flare. It makes me nuts too when that happens because I have no idea where it came from. I found that my period time is the absolute worst and there is almost nothing I can do about it. (I'm hoping for a solution but it's not coming quick enough) Maybe because you period is late it's causing a problem. For me I notice IC totally activates according to hormone changes. I wish I knew exactly what was going on in my body at that time so I could do something.
                          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


                          • #14
                            Hormone fluctuations can definitely effect IC symptoms. I hope your tomorrow is better.


                            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


                            • #15
                              Stupid hormones. Thanks toto and Donna!

                              Donna have you tried a carob milkshake? I made some carob chip cookies and didn't know the differece between those or chocolate ones. Can carob be put in a shake?

                              Comment

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