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  • #1

    Explanation help

    OK so I just got diagnosed this afternoon. I kind of thought it was coming and have been lurking on the boards for a while. It is now official and I am upset. I was hoping it was just the PFD. Now it is time to cope! I need help with the FAMILY...not my hubby and kids...the others. I am leaving in a week to spend a month with my sisters, mother, aunt, etc. etc. The worst is my mother really. She is very self-involved. I need to figure out a way to explain this to her. How do I explain to a selfish person that I am in pain and yes, it is worse that hers? I know I am making her sound pretty bad...but it is just the way she is...we love her anyway.
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    • #2
      Just diagnosed, self centered mom

      Special hugs for you! Bless your heart, I have had ic for 23years and I did'nt really understand WHAT it was right away. It sounds like you at least know what it is. That's good. Now for your selfcenterd mom. . . sometimes people hear what is being said if you are not doing the talking. You could get your doctor to call her. Explain what you just said to him/her. Tell him your mom needs to know how much support you need now. That could be the reason he calls your mom, to tell her that ic patients need alot of understanding and that he was concerned about you.ect. ect. If not your doctor, then the one person that she respects enough to listen to, another family member or a friend. Hang in there.

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        • #3
          Originally posted by Stacie Lynn
          OK so I just got diagnosed this afternoon. I kind of thought it was coming and have been lurking on the boards for a while. It is now official and I am upset. I was hoping it was just the PFD. Now it is time to cope! I need help with the FAMILY...not my hubby and kids...the others. I am leaving in a week to spend a month with my sisters, mother, aunt, etc. etc. The worst is my mother really. She is very self-involved. I need to figure out a way to explain this to her. How do I explain to a selfish person that I am in pain and yes, it is worse that hers? I know I am making her sound pretty bad...but it is just the way she is...we love her anyway.
          I'm sorry I can't offer any advice with telling people.. My Mum & Nana (her Mum) are just the same. I tried explaining my problems to my Mum last night & I think it just went in one ear & out the other.. She can get quite competitive when it comes to being unwell.

          I hope you find a way to tell her.. Then maybe you can offer me some advice later if I get diagnosed! Lol xx

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            • #4
              Some people will just never understand --- my mother, rest her soul, never did understand that IC isn't something that can be cured. I finally just stopped trying to discuss it with her. Your sisters will probably be more understanding and can help you to cope.

              Sending gentle hugs,
              Donna
              Stay safe


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                • #5
                  Welcome to the IC forum, I am so sorry your mom has that kind of attitude. Some people you can explain to them till your blue in the face and they will never uderstand. Here on this forum you will always have support, doe's your doctor have you on a treatment plan? and are you on the IC diet?
                  I wish you a nice visit and let us know how things work out for you.
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                    • #6
                      Originally posted by JustmeGemmy
                      I'm sorry I can't offer any advice with telling people.. My Mum & Nana (her Mum) are just the same. I tried explaining my problems to my Mum last night & I think it just went in one ear & out the other.. She can get quite competitive when it comes to being unwell.

                      I hope you find a way to tell her.. Then maybe you can offer me some advice later if I get diagnosed! Lol xx
                      I think our mother's are related! LOL It is sad. I never understood why people have to complete when it comes to being ill. I want to be WELL! I will compete on being WELL!!! Hey, I will compete on sports, school, you name it, but who feels worse always seemed so silly to me...but my mom has that one down COLD!!! She does love a crisis though...when I had my embolism a few weeks ago she was on the phone to everyone..."oh poor me, my daughter almost died!" This one is baffling her...oh well what ya gonna do.

                      As far as a treatment plan, that one is odd...the nurse called and told me after the PST that the doc decided I was IC and that he recommended instills 3 times a week. I asked if I needed to make an appt to come in and talk to him about the diagnosis. She said if I wanted to, but the instills were nurse visits. I called later to make an appt with him to talk (because as far as he knows I have never been on this board and know nothing) he has no openings until AUG! So I have an appt with the nurse on Monday, but other than the instills there is no plan and I haven't talked to the doctor...I find this odd...Anyone else???

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                        • #7
                          Originally posted by Stacie Lynn
                          I think our mother's are related! LOL It is sad. I never understood why people have to complete when it comes to being ill. I want to be WELL! I will compete on being WELL!!! Hey, I will compete on sports, school, you name it, but who feels worse always seemed so silly to me...but my mom has that one down COLD!!! She does love a crisis though...when I had my embolism a few weeks ago she was on the phone to everyone..."oh poor me, my daughter almost died!" This one is baffling her...oh well what ya gonna do.

                          As far as a treatment plan, that one is odd...the nurse called and told me after the PST that the doc decided I was IC and that he recommended instills 3 times a week. I asked if I needed to make an appt to come in and talk to him about the diagnosis. She said if I wanted to, but the instills were nurse visits. I called later to make an appt with him to talk (because as far as he knows I have never been on this board and know nothing) he has no openings until AUG! So I have an appt with the nurse on Monday, but other than the instills there is no plan and I haven't talked to the doctor...I find this odd...Anyone else???
                          I had to stop talking to my Mum for a while because she was just too much for me. When my brother was diagnosed with epilepsy she got the entire village to pray for him! He then had to have a heart op, an ablation & tells people that he had died on the table & they had to shock him back to life!! That's not even true. They had to shock his heart to see if they'd ablated the right spot. Lol.

                          It's nice to know I'm not alone in the crazy-Mum department!

                          I can't believe you aren't getting more support from your Dr.. A waiting time of August is awful! I really hope you get it sorted soon! x

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                            • #8
                              Wow, how did I miss this one, I know exactly how you feel when it comes to your mother, I rarely speak too mine. She called shortly after I was diagnosed with IC and all she had to say was MAYBE THAT'S WHAT'S WRONG WITH ME...

                              I'm sorry that your hurting but you have a great support group here.
                              IC diagnosis 3 weeks ago.
                              Vesicare 10 mg once daily
                              IBS and Gerd-Zegerid
                              IC diet
                              Elmiron 100 mg three daily
                              Hydroxyzine 25 mg at night
                              Amitriptyline 10mg at night
                              Diovan 60/12.5 daily
                              Topral 50 mg daily
                              Zoloft 100 mg at night
                              Klonopin .5 twice daily

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                                • #9
                                  Originally posted by greeneyes
                                  Wow, how did I miss this one, I know exactly how you feel when it comes to your mother, I rarely speak too mine. She called shortly after I was diagnosed with IC and all she had to say was MAYBE THAT'S WHAT'S WRONG WITH ME...

                                  I'm sorry that your hurting but you have a great support group here.
                                  OMG! I hate when people say that!

                                  My Mum tried to have depression after I did (one of the reasons I just couldn't stand to be around her). She still comments on it now & it rattles me.. Especially as she tells people that she just chose to get over it!

                                  Everyone here is so lovely & supportive I've never felt so welcomed & I've not even got a diagnosis yet! xxx

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