Announcement

Collapse
No announcement yet.

Frustrated

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Frustrated

    Here is a story for you: My sister in law's mother was out to dinner with us one night this past week, and of course she wanted to know why I couldn't eat certain things, so I told her. Then she starts telling me about her friend who has IC, and that she thinks her friend should get a life, and that all she does is talk about her condition, and all she does is look for bathrooms, and that her friends are all fed up with her.....I wanted to kill this woman, and I felt so bad for her friend. (if only she knew how they talked about her). Who the heck does she think she is talking about something she knows nothing about. Oh ya, and she told everyone at the table that her friend got IC from drinking too much coffee so now my brother et al think you get IC from coffee drinking...grrrrrr, and of course she doesn't let you get a word in edgewise so I couldn't explain to her or anyone else that they really don't know how IC happens, but that there are theories. I was so mad. Karma might hit here square in the chops one day!!!

  • #2
    When people like that ask me why I can't eat certain things, I just tell them I have allergies --- then change the subject. A good response to that lady might be that it takes someone with knowledge of medical conditions to understand - so you won't try to explain.

    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


    • #3
      Thanks Donna. I appreciate, and understand what you are saying, and I didn't elaborate much because I know that most people don't really understand. I'm not much of a complainer either. It was her talking about her friend who has IC without compassion is what made me angry. I don't care about whether people understand why I can't eat one thing or another, but to talk about a disease she knows nothing about and putting down her friend who is suffering with this disease while she is not there, that's another story. She is talking about a subject she knows nothing about and misleading people to believe wrong information. I'm basically worried about what my family understands because I don't want them thinking that it's all in my head which is basically what this woman was saying. Especially saying that her friend needed to get a life, that put me over the edge. I'm just really angry and needed to vent. I have known this woman since I was 5 yrs old, and she is really difficult to be in a room with because she talks non stop without letting anyone else say anything. Also I don't think I should be afraid to tell people what is wrong with me if they ask. As I said before I don't elaborate, I just say I have IC and I can't eat certain things. If they want to know more I can explain. More people need to know about this disease, and I am finding other people who are suffering, and hopefully we can support one another.

      Comment


      • #4
        gosh that was really rude. I think donna gave some great advice. maybe print your brother up some ic info and give it to him.
        'The will of God will never take you where the Grace of God will not protect you.'

        Comment


        • #5
          I can really understand your frustration, I would have felt the same way. That is why when people ask me how I am doing, I just freeze up. I don't know if they will truly understand or if it will put to much of a load on them. Sometimes you don't know if you should make it simple and sweet or just tell them the facts of IC.

          Maybe we can make a list of what to say and what not to say to people about IC. I know it will help me and maybe feel more sure about myself.

          Take care, Trishann

          Comment


          • #6
            Might be okay to just tell your family you're worried about what she said & that you want to make sure they understand where you're coming from?

            I hate situations like that--insensitive know-it-alls are the worst!
            Kadi

            -------------------------------------------------------------
            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.
            ------------------------------------------------------


            New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
            Source - Pinterest
            "


            Current treatments:
            -IC diet
            -Elavil 50mg at night
            -Continuous use birth control pills (4-5 periods/year)
            -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
            -Pyridium if needed,
            -Pain medicine at bedtime daily, as needed during the day several times per week
            -Antibiotic when doing an instillation to prevent UTI
            -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
            -Dye Free Benadryl 50 mg at bedtime
            -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
            -Managing stress= VERY important!
            -Fur therapy: Hugging the cat!

            Comment


            • #7
              Oh, I know just how you feel Trishann! I dislike for people to say, "How are you?" to me. It is just a pleasantry, usually, I don't think people want to hear anything other than, "Fine." But I am very far from fine so it's hard to say that. And then if you do explain, you run into people like glassd's in-law, who think they know more than you or who criticize you for being sick. It seems like a small thing, but it comes up a lot in life. But when people ask me why I'm not eating some things, I usually say that it's not something you'd want to discuss at the table. I mean, do you really want to have a conversation about bladders over dinner, anyway?

              I would talk to your brother, glassd. I think it's important to let him know that you have spent a great deal of time educating yourself about this condition, and it is not in your head. And if this in-law mentions her "friend" again, ask for her phone number! It sounds like she could use some support, with "friends" like that.
              Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
              Wishing you happiness and good health, and all the best out of life.

              Peace, Carolyn
              ___________________________________________________

              Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


              On the Beach with IC

              Comment


              • #8
                I just love your answer about asking for the telephone number to that friend she is talking about. You can tell your sister-in-law's mother that it sound like this lady need a friend and need someone to talk with that understand what IC means. I love it.

                Take care, Trishann

                Comment


                • #9
                  Wow! Great idea Carolyn about asking for the phone #.
                  Geez, hope not all her "friends" are like your SIL's mom...
                  Kadi

                  -------------------------------------------------------------
                  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.
                  ------------------------------------------------------


                  New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
                  Source - Pinterest
                  "


                  Current treatments:
                  -IC diet
                  -Elavil 50mg at night
                  -Continuous use birth control pills (4-5 periods/year)
                  -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
                  -Pyridium if needed,
                  -Pain medicine at bedtime daily, as needed during the day several times per week
                  -Antibiotic when doing an instillation to prevent UTI
                  -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
                  -Dye Free Benadryl 50 mg at bedtime
                  -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
                  -Managing stress= VERY important!
                  -Fur therapy: Hugging the cat!

                  Comment


                  • #10
                    Frustrated

                    First off let me say that I have not done the IC Diet yet, it just seems like one thing after another that gets in my way of even getting started. I haven't had a problem with anyone except my husband. What I mean is he thinks it is mainly caffeine that makes me have to go so much, he doens't think it is food. Heck, he even wanted to to stop the meds. I can say that I do notice when I do take the VesiCare, I don't go as often.

                    People who do not have IC or have even heard of it or OAB do not understand. I ALWAYS look for bathrooms where ever I go, especially if I am new to that place. EVen when we go on trips, I highlight the Rest Area's on the maps.

                    I guess the reason people do not understand that you do have a illness and that you are sick is because it is not visible. If it was something they could see, then I think people would be more understanding. BUT people can't see your bladder.

                    My MOM does not understand why I would have this type of problem when NO ONE else in my family has it. Why, pretty much ALL my family on my Mom's side drink coffee (mostly 24/7) and it does not effect them like it does me. My MOM does remember me always having to "go" as a child. BUT then again, I drank alot of caffeine (POP). But as a kid, you don't think of pop has something bad for you.

                    Good Luck with the Mother-in-Law.
                    Kim

                    Comment


                    • #11
                      I'm 39 yrs old and have never had a cup of coffee in my life. I like the smell but I can't stand the taste I have a lovely case of IC. Pain everyday. You have my permission to print this and hand it to your sil/mil and to whoever thinks coffee is the culprit.

                      Comment


                      • #12
                        Coffee is not the blame for IC. Coffee just aggravates it for some people. I am sorry that woman was so rude with talking about her friend like that, in fact she is not much of a friend from what she said.

                        I find it funny how it is usually the people who are healthy and have no problems that are the first to open their mouths and critisize the ones that are sick, or they try to play the doctor and act like they know all, when in fact they know nothing and just make themselves look ignorant. It is so crazy.

                        I do not explain my illnesses to anyone unless thay ask or it is someone very close to me who is understanding. Most people wont get it, and do not care to get it. It is sad, but that is just how some people are. It it worse when it is a family member though. I have a brother who is very NON- understanding with all my illnesses. I just dont talk to him much anymore. I also have severe stomach motility issues and cannot eat very much and get alot of pain and such. Well my brother's idea is that I should just relax and have a beer and stop dwelling on my sickness. Easy for him to say when he can eat a normal meal and not be sick as a dog afterwards and that his stomach works properly and digests well.

                        Anyhow, I found that it is no use trying to explain yourself or what is wrong with you. Alot of people are just not going to get it, especially the self-indulged people. My advice is to just avoid people like this, that is what I do.
                        Jen

                        Comment


                        • #13
                          When I ask one of my drivers how he is doing...He always answers with "I am blessed". I love that response!

                          I agree that you should get the number of the friend with IC. You should tell her what is being said about her. Then you should reach out your hand to her.

                          Good luck!
                          Meds: Percocet PRN; Pyridium PRN. First symptoms Dec 2005. Diagnosed in March 2006.

                          I am the proud mom of a two year old boy! I was lucky enough to be in remission my entire pregnancy. If you have any questions regarding my pregancy, delivery, breastfeeding, or pumping, feel free to contact me!

                          Im on Facebook! Just tell me you are from the ICN. Look me up under Kim Wayne.

                          I love working as a CNA in a nursing home. Started school in August part time. Going for my LPN!!!!

                          Comment

                          Working...
                          X