Guest guest Posted October 21, 2005 Report Share Posted October 21, 2005 yeah there is and welcoem to the group a definate severe charger lol dont worry just ther ewas another post bout mild and that your the other end for people who are wndering well im ellenhwoe in aus ive spoken to you befor on here i have sswollowing and other issues to hugs ellen > > Hello, > I just wanted to introduce myself and my family. My name is > and my husband is . We have 3 children: 7, > 4, Jonas 1(charge syndrome). I would like to start out by saying > this support group is wonderful. It's nice to talk to others who > are in the same situation as we are. Jonas was born at 37 weeks and > had to be intubated shortly after birth. He was born in Beckley, WV > and the docs there had no idea what was wrong, so we had him > transferred to University of Virginia. At 2 months of age, he had > heart surgery, but could not be extubated. After being intubated > and extubated so many times, the docs wanted to give him a trach, so > at that time we decided to have him transferred again to Childrens > Hopsital of Philadelphia to get another opinion about his airway. > Of course he did get a trach, due to tracheomalacia. Its been a > long year! We have relocated to Pennsylvania, due to better > hospitals for Jonas. Jonas medical history consist of: > > heart surgery: VSD,ASD,Aortic arch repair > vision: great, no coloboma > craniosynosis surgery( where sutures close up and doesn't give room > for brain to grow, so they go in and open them up) > G-tube: does not swallow very well, high palate, and is aspirating > undescended testes-micropenis > deaf in both ears-hearing aids are no help, hope to get the cochlear > implant > delayed-rolls over, is trying to crawl, will sit up for about 1 > minute by himself > Medications: Robinul, Zantac, Reglan, Flovent, Atrovent, testerone > injections, Bactrim > Overall Jonas is a happy baby, who anticipates play, and is pleasant > to be around. We thank god each and every day for our special > little boy. I will get a picture of him posted this week. I > noticed theres another boy named Jonas! > > :-) > > > > > > > > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca or > email info@... . > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org <http://www.chargesyndrome.org> or by calling > 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2005 Report Share Posted October 21, 2005 Welcome to you and Jonas. He has been through a lot. I have one quick question about his hearing. Have they tried bone conduction aides with him? Some of our kids who seem to have no hearing have benefited from them. Jim Thelin in TN is an audiologist who is up on CHARGE, and has been working with our audiologist to test in a way to see if his malformed cochlea has any hearing potential at all and if so we would bypass his inner ear problems which create such a profound conductive loss and get the input straight to the cochlea through a conduction aid. (I hope I explained that okay - audiology is not my thing). And I guess the follow up ? Is have they done a scan that looks at his temporal lobe? With all the emotional ups and down of intubation and reintubation, everything else CHARGE, and then the move, I am glad things are settling down for you. Kim > Hello, > I just wanted to introduce myself and my family. My name is > and my husband is . We have 3 children: 7, > 4, Jonas 1(charge syndrome). I would like to start out by saying > this support group is wonderful. It's nice to talk to others who > are in the same situation as we are. Jonas was born at 37 weeks and > had to be intubated shortly after birth. He was born in Beckley, WV > and the docs there had no idea what was wrong, so we had him > transferred to University of Virginia. At 2 months of age, he had > heart surgery, but could not be extubated. After being intubated > and extubated so many times, the docs wanted to give him a trach, so > at that time we decided to have him transferred again to Childrens > Hopsital of Philadelphia to get another opinion about his airway. > Of course he did get a trach, due to tracheomalacia. Its been a > long year! We have relocated to Pennsylvania, due to better > hospitals for Jonas. Jonas medical history consist of: > > heart surgery: VSD,ASD,Aortic arch repair > vision: great, no coloboma > craniosynosis surgery( where sutures close up and doesn't give room > for brain to grow, so they go in and open them up) > G-tube: does not swallow very well, high palate, and is aspirating > undescended testes-micropenis > deaf in both ears-hearing aids are no help, hope to get the cochlear > implant > delayed-rolls over, is trying to crawl, will sit up for about 1 > minute by himself > Medications: Robinul, Zantac, Reglan, Flovent, Atrovent, testerone > injections, Bactrim > Overall Jonas is a happy baby, who anticipates play, and is pleasant > to be around. We thank god each and every day for our special > little boy. I will get a picture of him posted this week. I > noticed theres another boy named Jonas! > > :-) > > > > > > > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca or email > info@... . > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2005 Report Share Posted October 21, 2005 - Welcome to the CHARGE family! I look forward to hearing more about your family and Jonas. You've survived an incredible year and it sounds like you are all adjusting quite well. I'm sure the support and info you receive here will be wonderful and we look forward to your input too. Michele Westmaas mom to Aubrie 7 yrs CHaRgE and 13 yrs, wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2005 Report Share Posted October 21, 2005 Welcome to the " J Clan! " - Sounds like a typical first year of living with CHARGE; hopefully things will settle or are already seeming more settled for you. I'm not surprised to hear that Jonas is a happy baby; we couldn't believe how miss Kennedy was so happy even way back then when she had all those awful things happening to her. I guess it's all they know so it's their own " state of normal " . Nice to have you on the list, Weir Home: lisaweir@... Work: lisa.weir@... Phone: Web: http://ca.geocities.com/weirfamilyrogers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2005 Report Share Posted October 22, 2005 Hi - I thought I just HAD to welcome you to the group because your Jonas sounds so much like my little Maya (CHARGE 15 months old). She too received a trach after a number of reintubations. We are still awaiting heart surgery, but she has no colobomas or vision issues at this time. She has a facial palsy, and is deaf. Actually, her MRI for candidacy for the cochlear implant showed that she does not have hearing nerves, so the cochlear is no longer a possibility. Maya has a g-tube and aspirates, so no oral food at this time. She is a very delightful child and is taking off right now. She too wants to crawl badly. She rocks back and forth on all fours, and occasionally starts to move her arms to crawl. She sits up now really good, and can transition to her belly from the sitting position. I love watching her move as much as she can, after so many months of being so still and uninterested in interacting with things. It is amazing what she can do without semi-circular canals! We currently live in Washington (near Seattle), but I grew up in Pittsburgh, PA. So much in common, I hope that some day our little ones can meet. This group has been a HUGE source of support for us, and a wealth of information. Take care, Marty , wife to Dean, mom to Maya 15 moths chamberlainjk wrote: Hello, I just wanted to introduce myself and my family. My name is and my husband is . We have 3 children: 7, 4, Jonas 1(charge syndrome). I would like to start out by saying this support group is wonderful. It's nice to talk to others who are in the same situation as we are. Jonas was born at 37 weeks and had to be intubated shortly after birth. He was born in Beckley, WV and the docs there had no idea what was wrong, so we had him transferred to University of Virginia. At 2 months of age, he had heart surgery, but could not be extubated. After being intubated and extubated so many times, the docs wanted to give him a trach, so at that time we decided to have him transferred again to Childrens Hopsital of Philadelphia to get another opinion about his airway. Of course he did get a trach, due to tracheomalacia. Its been a long year! We have relocated to Pennsylvania, due to better hospitals for Jonas. Jonas medical history consist of: heart surgery: VSD,ASD,Aortic arch repair vision: great, no coloboma craniosynosis surgery( where sutures close up and doesn't give room for brain to grow, so they go in and open them up) G-tube: does not swallow very well, high palate, and is aspirating undescended testes-micropenis deaf in both ears-hearing aids are no help, hope to get the cochlear implant delayed-rolls over, is trying to crawl, will sit up for about 1 minute by himself Medications: Robinul, Zantac, Reglan, Flovent, Atrovent, testerone injections, Bactrim Overall Jonas is a happy baby, who anticipates play, and is pleasant to be around. We thank god each and every day for our special little boy. I will get a picture of him posted this week. I noticed theres another boy named Jonas! :-) Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter), please contact marion@... or visit the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada information and membership, please visit http://www.chargesyndrome.ca or email info@... . 8th International CHARGE Syndrome Conference, July, 2007. Information will be available at www.chargesyndrome.org or by calling 1-. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2005 Report Share Posted December 1, 2005 Welcome Ellen (and possibly the first Israel member, at least as far as I know!)! Please check out the FAQ section at http://www.psc-literature.org/FAQ.htm for a start on the more common questions. A year after my initial cholangitis episode, my CBD was dilated and stented (2001), stent removed 2 weeks later. My gallbladder was removed later that summer. It was characterized as "3 times normal size and diseased". The tests I'd had showed that the gallbladder failed to fill when "asked" (an unpleasant enzyme experience!). since it wasn't working properly, I suspect it was a hideout for bacteria. Pathology report was normal, other than inflammation. I've been asymptomatic since that time. Welcome to a great group! Arne54 - UC 9/77 - PSC 4/00Alive and (mostly) well in Minnesota From: [mailto: ] On Behalf Of Ellen Wallace ... I'd be interested to hear other people's experience with stents and urso (which of course I can also access from the archives) as well as if anyone has had their gallbladder removed (if so why). We are very happy that such a group exists and hope to help others with our experiences and vice versa. Kind regards, Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2005 Report Share Posted December 1, 2005 Hello: I was diagnosed in 2001 (4 years ago tomorrow as a matter of fact). At the time - I went to the ER for what I thought was an ulcer. The ER doc started talking about a possible gallbladder problem and called in a surgeon. After the surgeon was called - they received my labs back and my liver function tests were off the charts. In my case they did go ahead and remove the gallbladder because they said it was not functioning at 100% but the real difficulty had to do with blockages in the ducts. That particular blockage ended up moving through (with a great deal of pain) so they did not have to do a stent. About a year and a half later I had another blockage and that did require a stent being placed in the common bile duct. It was removed a couple of weeks later and I have not had problems with blockage again. I do take URSO. I started at 250 mg twice a day but I recently went up to 500 mg twice a day. I'm not really sure why we increased. He said something about the 500 being newly available. I am not yet good at the doctor's visits. All I can think when I'm in there is that I want to get out of there so that I can go on with normal life and not think about this illness. While I know that isn't the approach to take. It is the one that I have right now. I did not experience any problems at all with URSO and my liver function test are normal now. Good luck and I hope that I have helped a little with your questions. >>> e_boermeester@... 12/1/2005 2:52:58 AM >>> Hello everyone, My husband was diagnosed with PSC in 2002-3, even though he has been a-symptomatic for the past few years, the PSC progression has been followed closely by a hepatologist here in Israel (our country of residence). Three months ago this all changed and he started getting severe abdominal pains and a few vomiting episodes and his GGT count doubled (among other liver enzymes and markers) from the already abnormally high count. A month ago a successful ERCP was performed and a stent was placed with great difficulty in his CBD (common bile duct)and this week his doctor has put him on Urso (or Ursolite as it is called her in Israel)--happy to say with no side effects. In another month or so the current stent will be replaced and two others will be put in its place. Hopefully, the stents and urso will help the blockage of the CBD. I'd be interested to hear other people's experience with stents and urso (which of course I can also access from the archives) as well as if anyone has had their gallbladder removed (if so why). We are very happy that such a group exists and hope to help others with our experiences and vice versa. Kind regards, Ellen --------------------------------- Yahoo! Music Unlimited - Access over 1 million songs. Try it free. ***************************************** This message is confidential, intended only for the named recipient(s) and may contain information that is privileged or exempt from disclosure under applicable law. If you are not the intended recipient(s), you are notified that the dissemination, distribution or copying of this message is strictly prohibited. If you received this message in error, or are not the named recipient(s), please notify the sender and delete this e-mail from your computer. Thank you. BEGIN:VCARD VERSION:2.1 X-GWTYPE:USER FN:Wilkinson, ORG:;Human Resources EMAIL;WORK;PREF;NGW:CA_NAGL@... N:Wilkinson; END:VCARD ***************************************** This message is confidential, intended only for the named recipient(s) and may contain information that is privileged or exempt from disclosure under applicable law. If you are not the intended recipient(s), you are notified that the dissemination, distribution or copying of this message is strictly prohibited. If you received this message in error, or are not the named recipient(s), please notify the sender and delete this e-mail from your computer. Thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2005 Report Share Posted December 1, 2005 , You might want to go to the file section and read the papers on high dose Urso. It will help you to understand why your dose was increased. Just go to the yahoo page and click on the file section. Lee > > I do take URSO. I started at 250 mg twice a day but I recently > went up to 500 mg twice a day. I'm not really sure why we > increased. He said something about the 500 being newly available. > I am not yet good at the doctor's visits. All I can think when I'm > in there is that I want to get out of there so that I can go on > with normal life and not think about this illness. While I know > that isn't the approach to take. It is the one that I have right > now. I did not experience any problems at all with URSO and my > liver function test are normal now. > Good luck and I hope that I have helped a little with your questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2005 Report Share Posted December 1, 2005 Dear Ellen, Welcome to the group. This is a really great place to get information and compare experiences. I find it to be an excellent source of questions to ask my son's doctors as more and more is learned about PSC. On a side note, my son's MRCP showed an enlarged gallbladder. That scared me until the doctors explained that since he had to fast before the procedure, it was normal for the gallbladder to collect a larger-than-usual amount of bile. I also wonder if taking the high doses of Actigall/Urso, which is synthetic bile, actually pours more bile into the gallbladder causing it to enlarge. Maybe having an enlarged gallbladder isn't so unusual with PSC. I hope the stents work for your husband. It's great that he can take the Ursolite -- it seems to be helping many people in the group, my son included, and many have normal (or near-normal) liver enzyme counts while taking it. Best Regards, Dana (Mom of Josh, 5 yrs old, UC 3/04, PSC 4/04) > > Hello everyone, > > My husband was diagnosed with PSC in 2002-3, > We are very happy that such a group exists and hope to help others with our experiences and vice versa. > > Kind regards, > Ellen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2005 Report Share Posted December 1, 2005 Thank you Lee. That was very nice of you. I shouldn't be so " head in the sand " and I do know that. I just deal with it when I have to and the rest of the time I just go at about 100 mph. My physician says that my biggest problem is that I can't control this and he is right. I'm a huge control freak and think that if I can just get it figured out then I can beat it. I still think that even after 4 years. Thanks again. >>> ldbria@... 12/1/2005 7:35:59 AM >>> , You might want to go to the file section and read the papers on high dose Urso. It will help you to understand why your dose was increased. Just go to the yahoo page and click on the file section. Lee > > I do take URSO. I started at 250 mg twice a day but I recently > went up to 500 mg twice a day. I'm not really sure why we > increased. He said something about the 500 being newly available. > I am not yet good at the doctor's visits. All I can think when I'm > in there is that I want to get out of there so that I can go on > with normal life and not think about this illness. While I know > that isn't the approach to take. It is the one that I have right > now. I did not experience any problems at all with URSO and my > liver function test are normal now. > Good luck and I hope that I have helped a little with your questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2005 Report Share Posted December 1, 2005 Dear , I, like you, am a control freak who is out of control when it comes to this disease. And, like you, I tend to go about my days trying not to think about the future and this disease. You keep on going at 100 mph and take the curves on 2 wheels! But try to keep up with the new studies and research findings just in case you read something your doctors don't. I tend to scavenge for information on PSC a day or two before the doctor appointment. That way I cram all the bad news and things I don't want to think about on a daily basis into one or two days of worry and panic. So many of us are finding out that our doctors just don't know that much about this disease -- some in this group are even more knowledgable than their doctors!!! Good luck and don't get any speeding tickets! Dana (Mom of Josh, 5 yrs old, UC 2/04, PSC 4/04) > > Thank you Lee. That was very nice of you. I shouldn't be so " head in the sand " and I do know that. I just deal with it when I have to and the rest of the time I just go at about 100 mph. My physician says that my biggest problem is that I can't control this and he is right. I'm a huge control freak and think that if I can just get it figured out then I can beat it. I still think that even after 4 years. Thanks again. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2005 Report Share Posted December 1, 2005 Dear , No we can't control your disease, but you can influence it! It is a good thing to keep trying to figure it out, it is the only way the future will change for this disease. Hang in there with us! We will make a difference. Lee > Thank you Lee. That was very nice of you. I shouldn't be so " head > in the sand " and I do know that. I just deal with it when I have > to and the rest of the time I just go at about 100 mph. My > physician says that my biggest problem is that I can't control this > and he is right. I'm a huge control freak and think that if I can > just get it figured out then I can beat it. I still think that > even after 4 years. Thanks again. > > >>> ldbria@... 12/1/2005 7:35:59 AM >>> > , > You might want to go to the file section and read the papers on high > dose Urso. It will help you to understand why your dose was increased. > Just go to the yahoo page and click on the file section. > Lee > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2010 Report Share Posted June 30, 2010 Hi all, I just joined the group and I apologize up front for the long email. Recently I googled `controlling and manipulative mother' and kept coming up with BPD. I am 35 and my brother is 31 and so after all these years and many, many struggles we finally have a name for it. We're also realizing just how manipulated and controlled my father really is and that he ALLOWED his wife to mistreat him and his family. I am close with his family and they have been telling him for years to leave her. If you met my parents you would say wow they are so wonderful and nice, and they are, we do love them very much. But they have a very unhealthy and codependent relationship and we have had to deal with everything that goes along with that. I moved away for 2 years and just came back 4 months ago, thinking I was strong enough to handle it, but nothing has changed. I have tried EVERYTHING over the years to get through to them. My brother and I are FINALLY having a relationship after all the years of her dividing us. I am so tired and exhausted. My brother has an 8 year old daughter and we are doing everything we can to keep our mother from having the same negative influence on her. My mother's parents were alcoholics and now I think her whole family had/has BPD, my father was emotionally abused as a child so there is a lot of past garbage in both families. As for me, I have dealt with depression, substance abuse and all the other symptoms since I was a child. My brother recognizes that I def. got the worst of it. I picked up " Family guide to BPD " by Randi and I think all my acting out during my teenage years into my early twenties was because I also had BPD. Through much soul searching, self help books, therapy, medication, etc etc, I am at a much better place now. But moving back home I see there is still much more work to be done! Will it never end?! At 35 yrs old, I have never had a healthy relationship and neither has my brother. My brother married a woman who (no surprise) is very much like my mother! It is a daily struggle, these feelings of low self worth, self doubts, etc. Anyway, I am just hoping to talk with others who know what it feels like and to get support and tools to deal with this. At this time, we have decided to not cut our parents out of our lives completely. I want my life back and I want to be free to live a happy life. That's all & #61514; Thanks for listening. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2010 Report Share Posted July 1, 2010 Welcome, Melreb. I hope you will find this group a sanctuary as I have, with these friends who are in the fire with you. Amazing how relieved one can feel just to have a name for what you've suffered. Like if there's a name for it, someone else maybe understands. Here's a thought for something you mentioned in your post, about being BPD in your early 20s. It's also possible that the acting out you experienced in your early 20s was the result of what we call " fleas, " or faulty coping mechanisms learned from our family of origin (FOO). If you think you were BPD, you probably weren't, as BPDs have a tremendous inability/unwillingness to face what they do to themselves or others. May you be encouraged, and find support, and heal. Tina > > Hi all, I just joined the group and I apologize up front for the long email. Recently I googled `controlling and manipulative mother' and kept coming up with BPD. I am 35 and my brother is 31 and so after all these years and many, many struggles we finally have a name for it. We're also realizing just how manipulated and controlled my father really is and that he ALLOWED his wife to mistreat him and his family. I am close with his family and they have been telling him for years to leave her. If you met my parents you would say wow they are so wonderful and nice, and they are, we do love them very much. But they have a very unhealthy and codependent relationship and we have had to deal with everything that goes along with that. I moved away for 2 years and just came back 4 months ago, thinking I was strong enough to handle it, but nothing has changed. I have tried EVERYTHING over the years to get through to them. My brother and I are FINALLY having a relationship after all the years of her dividing us. I am so tired and exhausted. My brother has an 8 year old daughter and we are doing everything we can to keep our mother from having the same negative influence on her. My mother's parents were alcoholics and now I think her whole family had/has BPD, my father was emotionally abused as a child so there is a lot of past garbage in both families. As for me, I have dealt with depression, substance abuse and all the other symptoms since I was a child. My brother recognizes that I def. got the worst of it. I picked up " Family guide to BPD " by Randi and I think all my acting out during my teenage years into my early twenties was because I also had BPD. Through much soul searching, self help books, therapy, medication, etc etc, I am at a much better place now. But moving back home I see there is still much more work to be done! Will it never end?! At 35 yrs old, I have never had a healthy relationship and neither has my brother. My brother married a woman who (no surprise) is very much like my mother! It is a daily struggle, these feelings of low self worth, self doubts, etc. Anyway, I am just hoping to talk with others who know what it feels like and to get support and tools to deal with this. At this time, we have decided to not cut our parents out of our lives completely. I want my life back and I want to be free to live a happy life. That's all & #61514; Thanks for listening. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2010 Report Share Posted July 1, 2010 Thank you so much, Tina. That is interesting about the 'fleas'. I'm learning the lingo...I appreciate your support. Mel > > > > Hi all, I just joined the group and I apologize up front for the long email. Recently I googled `controlling and manipulative mother' and kept coming up with BPD. I am 35 and my brother is 31 and so after all these years and many, many struggles we finally have a name for it. We're also realizing just how manipulated and controlled my father really is and that he ALLOWED his wife to mistreat him and his family. I am close with his family and they have been telling him for years to leave her. If you met my parents you would say wow they are so wonderful and nice, and they are, we do love them very much. But they have a very unhealthy and codependent relationship and we have had to deal with everything that goes along with that. I moved away for 2 years and just came back 4 months ago, thinking I was strong enough to handle it, but nothing has changed. I have tried EVERYTHING over the years to get through to them. My brother and I are FINALLY having a relationship after all the years of her dividing us. I am so tired and exhausted. My brother has an 8 year old daughter and we are doing everything we can to keep our mother from having the same negative influence on her. My mother's parents were alcoholics and now I think her whole family had/has BPD, my father was emotionally abused as a child so there is a lot of past garbage in both families. As for me, I have dealt with depression, substance abuse and all the other symptoms since I was a child. My brother recognizes that I def. got the worst of it. I picked up " Family guide to BPD " by Randi and I think all my acting out during my teenage years into my early twenties was because I also had BPD. Through much soul searching, self help books, therapy, medication, etc etc, I am at a much better place now. But moving back home I see there is still much more work to be done! Will it never end?! At 35 yrs old, I have never had a healthy relationship and neither has my brother. My brother married a woman who (no surprise) is very much like my mother! It is a daily struggle, these feelings of low self worth, self doubts, etc. Anyway, I am just hoping to talk with others who know what it feels like and to get support and tools to deal with this. At this time, we have decided to not cut our parents out of our lives completely. I want my life back and I want to be free to live a happy life. That's all & #61514; Thanks for listening. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2010 Report Share Posted July 1, 2010 Welcome to the group. I find that simply having a name to call the problem helps a lot, as does knowing that other people have had similar experiences. You probably didn't have BPD when you were younger. BPD doesn't go away and people who have it have great difficulty understanding or admitting that there is anything wrong with them. They blame everyone else for problems. People who grow up in disfunctional familes tend to learn disfunctional behavior though, and children who are emotionally abused on a continuing basis develop ways of coping that are not necessarily good behavior under normal circumstances. Your acting out was probably a combination of those two things. At 11:30 AM 06/30/2010 melreb wrote: >Hi all, I just joined the group and I apologize up front for >the long email. Recently I googled `controlling and >manipulative mother' and kept coming up with BPD. I am 35 and >my brother is 31 and so after all these years and many, many >struggles we finally have a name for it. We're also realizing >just how manipulated and controlled my father really is and >that he ALLOWED his wife to mistreat him and his family. I am >close with his family and they have been telling him for years >to leave her. If you met my parents you would say wow they are >so wonderful and nice, and they are, we do love them very much. >But they have a very unhealthy and codependent relationship and >we have had to deal with everything that goes along with that. >I moved away for 2 years and just came back 4 months ago, >thinking I was strong enough to handle it, but nothing has >changed. I have tried EVERYTHING over the years to get through >to them. My brother and I are FINALLY having a relationship >after all the years of her dividing us. I am so tired and >exhausted. My brother has an 8 year old daughter and we are >doing everything we can to keep our mother from having the same >negative influence on her. My mother's parents were alcoholics >and now I think her whole family had/has BPD, my father was >emotionally abused as a child so there is a lot of past garbage >in both families. As for me, I have dealt with depression, >substance abuse and all the other symptoms since I was a child. >My brother recognizes that I def. got the worst of it. I picked >up " Family guide to BPD " by Randi and I think all my acting out >during my teenage years into my early twenties was because I >also had BPD. Through much soul searching, self help books, >therapy, medication, etc etc, I am at a much better place now. >But moving back home I see there is still much more work to be >done! Will it never end?! At 35 yrs old, I have never had a >healthy relationship and neither has my brother. My brother >married a woman who (no surprise) is very much like my mother! >It is a daily struggle, these feelings of low self worth, self >doubts, etc. Anyway, I am just hoping to talk with others who >know what it feels like and to get support and tools to deal >with this. At this time, we have decided to not cut our parents >out of our lives completely. I want my life back and I want to >be free to live a happy life. That's all & #61514; Thanks for >listening. -- Katrina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2010 Report Share Posted July 2, 2010 Thank you Katrina. It is somewhat relieving to put a name to it. I picked up a couple of books " The Borderline Mom " and " Surviving a Borderline Parent " and I'm finding a lot of comfort in these books. I am finally starting to feel a healing taking place inside me, and like I am learning to take care of myself and become selfish, but in a good way! I have never felt good about myself, although I know deep down my mother doesn't like herself either, but...that is her problem/responsibility...anyway, thanks again. I appreciate the support. > >Hi all, I just joined the group and I apologize up front for > >the long email. Recently I googled `controlling and > >manipulative mother' and kept coming up with BPD. I am 35 and > >my brother is 31 and so after all these years and many, many > >struggles we finally have a name for it. We're also realizing > >just how manipulated and controlled my father really is and > >that he ALLOWED his wife to mistreat him and his family. I am > >close with his family and they have been telling him for years > >to leave her. If you met my parents you would say wow they are > >so wonderful and nice, and they are, we do love them very much. > >But they have a very unhealthy and codependent relationship and > >we have had to deal with everything that goes along with that. > >I moved away for 2 years and just came back 4 months ago, > >thinking I was strong enough to handle it, but nothing has > >changed. I have tried EVERYTHING over the years to get through > >to them. My brother and I are FINALLY having a relationship > >after all the years of her dividing us. I am so tired and > >exhausted. My brother has an 8 year old daughter and we are > >doing everything we can to keep our mother from having the same > >negative influence on her. My mother's parents were alcoholics > >and now I think her whole family had/has BPD, my father was > >emotionally abused as a child so there is a lot of past garbage > >in both families. As for me, I have dealt with depression, > >substance abuse and all the other symptoms since I was a child. > >My brother recognizes that I def. got the worst of it. I picked > >up " Family guide to BPD " by Randi and I think all my acting out > >during my teenage years into my early twenties was because I > >also had BPD. Through much soul searching, self help books, > >therapy, medication, etc etc, I am at a much better place now. > >But moving back home I see there is still much more work to be > >done! Will it never end?! At 35 yrs old, I have never had a > >healthy relationship and neither has my brother. My brother > >married a woman who (no surprise) is very much like my mother! > >It is a daily struggle, these feelings of low self worth, self > >doubts, etc. Anyway, I am just hoping to talk with others who > >know what it feels like and to get support and tools to deal > >with this. At this time, we have decided to not cut our parents > >out of our lives completely. I want my life back and I want to > >be free to live a happy life. That's all & #61514; Thanks for > >listening. > > -- > Katrina > Quote Link to comment Share on other sites More sharing options...
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