No announcement yet.

So devasted!!

  • Time
  • Show
Clear All
new posts

  • So devasted!!

    I'm so devasted and hurt by my children that I just don't think I can cope anymore. My youngest, 17 yrs. old, informed me last night that I have single-handedly ruined our entire family with my "make believe diseases and mental disorders that cause me to go from Dr to Dr always looking for some new dx and problem." He also told me that everyone knows that I am only "sick" when it is convienant for me and that everyone in the family, my friends and people at church know it's a mental problem and I'm not really "sick" but am addicted to drugs. He went on and on and on.... it was a vicous attack and not one of my older 3 children stopped him or came to my defense. (BTW I'm not even on any narcotic meds and haven't been for yrs, I just started taking Ultram for my Lupus 2 weeks ago) I can't even understand where he is coming from, I've worked sooooo hard not let this ruin our family. I work full-time just to keep my insurance to ensure it doesn't financially ruin us. I'm actually eligable for disabilty but have opted to cont. working for as long as I possibly can. I've been the soccer/baseball mom, scout leader, tutor, taxi, go to all school activities..... for 25 yrs and now they come up with this!! Yes, the past 5 yrs have been pretty rough, and I have multiple medical problems in addition to IC, but my goodness who would WANT to go through the living hell that I go through?

    I'm so hurt this morning I could hardly even look at him when he got up for school. How can I handle this? I just want to crawl into a hole somewhere and die. Here I thought I was doing so well in being able to work, maintain my house and family, serve at church... even with all the pain and then to find out that this is how my children really feel about me. Someone please tell me what's the point of even trying to go on?

  • #2
    Dont you ever give up!!! I am stunned at the words and actions your son has chosen to say to you. It really blows my mind. You're not crazy and you dont have a mental disease and you are deffinitly not addicted to drugs. Maybe you should try to make him understand Ic. Have him sit down on this website and read what pain all of go through! Have you been diagnosed with Ic yet?? I would maybe also try Family counceling.
    You are a great mother. This disease not only ruins our lives but those around us. It's hard for people to understand waht we go through on a daily basis, most people will never understand. People cope in differnet ways. I think he is just frustrated and doesnt know how to channel his anger or misunderstandings. Maybe have a sit down and really tell him what is going on. I'm sure he didnt mean to hurt you at all. I think he is just concerned about your well being.
    Please dont ever feel like giving up... we're here to give you all the support and love you need. I will keep you in my prayers.



    Dance like no one is watching
    Love like you've never been hurt
    Live today like it's your last

    Dxd with IC in June '06


    • #3
      Thanks Rachel for your kind words. Unfortunately he DID mean to hurt me, this is not the first time this issue has come up but we thought we had explained it and they all understood what was really happening. Guess I was wrong. I just don't understand it, it is beyond my ability to comprehend their behavior. I took care of my mother my entire life until she passed away a few yrs ago. The thought never even crossed my mind to blame her for his disabilities and illnesses, she was sick my entire life and died at only 63.

      I guess my kids have always had this attitude, 5 yrs ago when I had a large bone tumor removed not one of them went to the hospital during or after the surgery. My husband sat there all alone during the surgery scared to death. The Drs could give us no info about the tumor, if it had spread... until after the surgery. Can you imagine? 2 yrs later when I had to have thoracic surgery the same thing happened, not one of my kids even offered to go to the hospital to be with him or me. They cut my chest open for crying out loud!! It was too far for them to drive, (1 hr.) or they couldn't get a sitter for the baby... Their comment was, "you have so many surgeries it's basically just another day for you, you'll be fine"

      Yes, I've been dx with IC among several other things. I've tried to educate my kids about pain, IC, the invisiable disease... it's no use, they just say, "you look fine to us." They weren't raised this way, I don't understand their selfishness. The thing is I NEVER ask my kids for anything or to help me in anyway so I don't understand what their problem is. If I need help with something I hire someone, ask a friend or ask my hubby to do it. I never ask any of them to take me to any Dr appts. or procedures. They even have a problem if I ask a friend to drive me to a Dr appt or procedure, like it's putting them out somehow. We've tried the therapy route but trying to get all of them to go has been a joke, they will go once or twice and refuse to go back. The thing is they don't WANT to understand.

      I must say that I do have a wonderful and supportive husband and I am so grateful for that. If I didn't have him there really would be no reason to go on.


      • #4
        Wow, I really don't know what to say. I would be floored and beside myself if one of my children said that to me. Is he having some hard times outside of the house, like at school, etc? I don't know, but my youngest will sometimes act out when he knows I feel the absolute worst because he doesn't know how to handle it when I'm sick and in pain. Maybe he's going through this and just took it out on you in the only way he knew how?

        You are an amazing person, you push yourself for your family and your church, etc, and I can tell you that I am not able to get out of the house and volunteer for much of anything. You really are a strong lady and you are an inspiration to all of us.

        I think it might be time for some counseling for him. He's obviously hurting inside, and I bet you that he feels awful today for the things he said to you.

        I'm just so sorry!
        *IC-- Summer 2004; PFD--October 2005
        *Fibro--Fall 2000; CFS-- Fall 2000
        *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

        Total Abdominal Hysterectomy--adenomyosis--9\08

        04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.


        • #5
          I am at a loss of words. It really hurts me to hear all the things that you are going through. I agree with Sandy... there has to be a reason why he is acting this way. Maybe it's school problems, but it shocks me that they wouldn't even visit you in the hospital!!!! God forbid something happened to you he wouldnt know what to do without you! Why dont you demand him and force him to go to therapy. He needs help, as you said he seems very selfish. I can't even imagine how you feel. If you ever need to vent know that we are all here to listen and give you the support and strength you need to get by.
          I'm 20 and alone... my family doesnt talk to me and that hurts. But to have your son say those horrible things really upsets me. I wish he will open his eyes and realize that you are truely sick and try to help you. It really breaks my heart. I wish I was a good at writing something inspirational like some of the women on here do but I just want you to know that you are NOT ALONE!!!
          God bless your husband.


          Dance like no one is watching
          Love like you've never been hurt
          Live today like it's your last

          Dxd with IC in June '06


          • #6
            How upsetting!

            I, too, am at a loss for words. Maybe you could print up some information about the pain of IC and give it to him to read? I'm just floored that he would attack you in this way Honestly, if I were you I would very angry and hurt right now at his words. Maybe his comments were fueled by frustration and it just "came out wrong"? HOW can a child say something so hurtful to their mother that takes care of them their whole life.

            I'd sit him down and have a serious talk with him and tell him how much that hurt you and to never say such things again.

            I'm so sorry

            Hugs and prayers,
            Hugs and Wishes for Pain FREE days!!,

   ~reducing plastic waste one bag at a time~

            Facebook: Kara Kaiser
            Twitter: Love4Earth

            Me and my Guccigirl... she helps me through those painful hours!


            • #7
              I know how words can hurt. It hurt me just reading what you wrote. Maybe you need to start thinking about yourself? He is 17 years old so old enough to start taking care of himself. If your other children are older yet then they can do on their own as well. Your children sound like my sisters. Never there to help out when someone needs help but when they have someting wrong or sick then the whole world has to stop. You are ill and it is not in your head. Next time he wants a meal made let him do it himself. Not sure if you do his laundry too but maybe it is time for him to learn to be a man.


              • #8
                I am just sitting in front of the computer, thinking about you, sharing your pain and trying to come up with anything to say that could be helpful. I'm kind of stunned.

                Do you have doctors that you trust? Because the only thing I can think of right now, is to bring the kids to meet with the doctor and have him or her explain things. Tell them you're cutting them out of your will if they don't attend.

                I just can't even take this in. I know anger is a normal enough emotion for a kid whose mom gets sick, but that's just Stage I. It sounds like he and his siblings are just stuck in Stage I or II (denial).

                Somewhere inside, though, he has to care about you. He may be frustrated that there is nothing he can do to make you better. In such situations, a kid usually needs to fix on a target to direct their anger towards. Some kids blame God, some blame the doctors, and I guess some blame the sick parent, too.

                I also wonder, if he is hearing gossip at your church about you being a hypochondriac, if this is the best congregation with which to share your worship. "You look fine to me," I HATE THAT, do all these people think they're doctors now? People are walking around with aneurisms, they may be one day away from death but they don't look sick. Many cancer patients don't even look sick. What does "sick" even look like?

                I can only repeat what others have said, your family is definitely in need of counseling. I know three of them must be adults and you can't force them to come, but you can probably guilt-trip them, and if not, do whatever it takes. Threats, bribes, it doesn't matter at this point. The important thing is to get together, preferably with a psychiatrist (because they're medical doctors and can understand your health situation more easily). Bring as many of your medical records with you that you can gather. Have the shrink look them over; maybe even have the kids look over parts of them.

                Most of all, don't blame yourself. You'll only add more stress to the situation and make yourself sicker. It sounds like you have been doing a heroic job of keeping it together. Maybe even too much so; if you always try to present your best face to your son, he can't get a real picture of how you are. I don't mean that you are in any way at fault, I just think there's a morass of misunderstanding in your family and it needs to be dealt with.

                I am SO sorry you are going through this. Please know that you have friends here who care about you, who understand your illnesses, and who will always listen to you, no matter how much you need to say.

                In my thoughts, I have my arms around you and am sharing your tears. Hold on, honey, and things will work out somehow. I am so sorry.
                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


                • #9
                  Baily Rose

                  Bailey Rose, so sorry for your confrontation with your son. However, a lot of teenagers are, angry, self centered, selfish, immature and blaming. You were the target of a lot of his anger due to his own unresolved stuff. Maybe he feels he didnt get the attention he wanted, maybe he feels you always liked his brother best? Who knows what goes on in their little pea brains?
                  My 30 year old son went into a tirade on me last month and it turned out he ended it all with,"You got my older brother a new Kawasoki and I got one Dad built." Like, What? He was 9 at the time, now he's thirty. Life isnt perfect and the world dosent try to make it better for you after you become a adult, this is too big a shock for some of these kids.
                  Dont take this as something you did or said, its about him and his anger at his family unit for what ever reason. He may get over it, he may not fo awhile. It took one of my kids about 4 years before he got some smarts.


                  Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
                  Diagnosis: IC, PFD (both in remission)


                  • #10
                    It sounds like raging hormones to me! You'd be totally amazed (maybe not) at how many teens will scream at a parent such things as "I hate you!" When my kids went through that stage I either walked out of the room or sent them to their rooms and I let them know that it was not acceptable behavior and would not be allowed.

                    Stay safe

                    Elmiron Eye Disease Information Center -
                    Elmiron Eye Disease Fact Sheet (Downloadable) -

                    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:


                    Diet list:

                    AUA Guidelines:

                    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.

                    Anyone who says something is foolproof hasn't met a determined fool


                    • #11
                      I know how you feel.

                      Bailey rose,
                      I am so sorry that you are having a tough time of it with your son.
                      Having been there myself I know what you are going through, (my own son who is 23and should know better) has done the same thing to me.
                      He went as far as saying that he couldn't care less if I never made it through surgery.
                      That really hurt, and I find it difficult to understand why he feels this way and why he said such a awful thing to me.
                      He said that I was seeking attention and one day the surgeons will realise that I am making it all up and send me home with a slap on the wrist.
                      It turned out that I had a deceased bladder and it had to come out in the end, and to top it all I almost died in the operating theatre.
                      When my daughter told him this he just shrugged his shoulders and said "and the problem is?"
                      Talk about selfish and nasty, I cannot believe he is my own flesh and blood.
                      My son stood right next to me at the weekend in the local supermarket and totally ignored me.
                      When my husband asked him what the problem was, and he just huffed and puffed and walked off.
                      I ask myself what did I do wrong, I always gave my 4 kids everything I could and have been there for their kids too.
                      And my own son has told lies about me and will not even speak about me.
                      I hope you get to the bottom of this with your son, I really do.
                      Why would any of us make something like this up, if we are ill then we see a doctor don't we?
                      Having bladder and kidney problems is not a thing you make up, it is a serious medical problem.
                      Tell him to read some of these messages on here, perhaps he will realise what is going on with you .
                      All the best hunny and if you need to talk please pm or email me at any time.

                      love from mum xxx
                      I have had IC and PBS for 20+ years.
                      Tried every medication I can think off.
                      Had a Clam Cystoplasty with Mitrofanoff in November 2006.
                      Had a Total Cystectomy, with a neobladder, Urethradectomy and Mitrofanoff review, also had a peristomal hernia repaired.
                      4th october 2007.

                      Check out my profile on
                      if you want to know more about me.


                      • #12
                        I suggest you sit him down and let him read what you have told us.Maybe then he will see this with your eyes! And also having other IC people respond & understanding your feelings it may make him stop & think .

                        Hugs Sandra
                        "Never Give Up."

                        To view pictures of my creative interests and Maine Coon kittens click here:

                        My Photobucket Link:


                        • #13
                          Sometimes, I'm sad because I'm 39, still single & will not have children, but other times I think I have no idea how I could handle IC and parenting. There are probably pluses & minuses to the single or married, with or without children type of lives. My hat is definitely off to you all who have IC and families!

                          I am a high school teacher, though & work with about 90 teens a day.
                          One thing that has helped me a lot is that I read a study where 3 groups of people (children, teens, adults) were shown photographs of individuals showing various emotions. The children & adults were able to correctly identify the emotions in the photos. The teens were overwhelmingly wrong - most of the time, saying that the photo subjects were "angry" or "mean", even when the photo showed someone sad or in pain.

                          Since I read that study, I've found it very important to spell out to my students exactly what I mean and to be very verbally clear in my reactions to things, so that they will understand. It has made a difference.

                          On days when I am flaring, I know that my students may misinterpret my pain & lower patience level, and it's just plain better for me to stay home. Parents don't have that luxury, but I know that on a flare day, 30 teenagers are 30 too many.

                          Hang in there, I remember saying absolutely rotten things to my mom (especially when I had PMS as a teenager) and being incredibly grateful to her for forgiving me, even as I was grounded...

                          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!


                          • #14
                            I wanted to thank all of you that responded and pm'd me. I've not had time to respond to all of you individually, but wanted you to know how grateful I am for your support, especially right now. My elderly step-dad has taken very ill so I'll be leaving in the morning to take care of him, very possibly for the last time. I have no other family so this is something I'll be tackling on my own my hubby needs to stay in town to deal with my son. I held my mother in my arms as she took her last breath in their home just a few years ago, and now I feel as if I'm stepping back into that same heart-wrenching moment in time. I love my step-dad with all my heart and would have it no other way, I take care of him out of love not duty, but it is tearing my heart out at the thought and don't know if I have the physical or emotional strength to do this on my own.


                            • #15
                              I am sorry you son said all those hurtful things to you. I have a 15 year old, and he lately treats me like crap and is always saying mean things to me. He thinks his father and I are the biggest idiots alive. I think it is his age. Your son also sounds like he is in that teenage stage still.
                              He should know better though than to talk to you like that. Shame on him! I bet he would be lost without you.
                              Sending Big Hugs to you.