Guest guest Posted November 5, 2006 Report Share Posted November 5, 2006 Amy There are people in this group who live in almost everyarea of the US and multiple countries. We have experienced, (or in my case my son has) almost every aspect of what PSC can do.We actually did not find this group til had been sick for 9 years and had been transplanted. I was a very lonely time as we thought he was about the only person in the world with the disease. Even Lahey, in Boston, where he was transplanted, does most of their transplants for other liver diseases. People here will talk to you online as a group or one on one. They will call you and some visit. I don't know if you saw but we even have our own convention. Good luck and God Bless. Marti Amy Springstroh wrote: Hi, I was so happy to find this support group for people/families dealing with PSC. I am 26 years old, I have Crohn's disease and was diagnosed with PSC this past summer. I have been feeling okay, so far my liver hasn't been damaged. I have been looking all over for as much info I can get on PSC, wanting to know everything...that's why I was so happy to find this support group! Amy Get your email and see which of your friends are online - Right on the new Yahoo.com Check out the New Yahoo! Mail - Fire up a more powerful email and get things done faster. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2006 Report Share Posted November 5, 2006 Amy, If you are still looking for information, I just love the s Hopkins website about PSC. http://hopkins-gi.nts.jhu.edu/pages/latin/templates/index.cfm?pg=disease4 & organ=3 & disease=30 & lang_id=1 If the link doesn't work, try cutting and pasting it into the explorer window. This might also be neccesary if the link was split into two lines. Welcome, and shalom from the holy land. Chaim Amy Springstroh <springstroh1980> wrote: Hi, I was so happy to find this support group for people/families dealing with PSC. I am 26 years old, I have Crohn's disease and was diagnosed with PSC this past summer. I have been feeling okay, so far my liver hasn't been damaged. I have been looking all over for as much info I can get on PSC, wanting to know everything...that's why I was so happy to find this support group! Amy Get your email and see which of your friends are online - Right on the new Yahoo.com Check out the New Yahoo! Mail - Fire up a more powerful email and get things done faster. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2006 Report Share Posted November 5, 2006 Amy, If you are still looking for information, I just love the s Hopkins website about PSC. http://hopkins-gi.nts.jhu.edu/pages/latin/templates/index.cfm?pg=disease4 & organ=3 & disease=30 & lang_id=1 If the link doesn't work, try cutting and pasting it into the explorer window. This might also be neccesary if the link was split into two lines. Welcome, and shalom from the holy land. Chaim Amy Springstroh <springstroh1980> wrote: Hi, I was so happy to find this support group for people/families dealing with PSC. I am 26 years old, I have Crohn's disease and was diagnosed with PSC this past summer. I have been feeling okay, so far my liver hasn't been damaged. I have been looking all over for as much info I can get on PSC, wanting to know everything...that's why I was so happy to find this support group! Amy Get your email and see which of your friends are online - Right on the new Yahoo.com Check out the New Yahoo! Mail - Fire up a more powerful email and get things done faster. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2006 Report Share Posted November 5, 2006 Amy, If you are still looking for information, I just love the s Hopkins website about PSC. http://hopkins-gi.nts.jhu.edu/pages/latin/templates/index.cfm?pg=disease4 & organ=3 & disease=30 & lang_id=1 If the link doesn't work, try cutting and pasting it into the explorer window. This might also be neccesary if the link was split into two lines. Welcome, and shalom from the holy land. Chaim Amy Springstroh <springstroh1980> wrote: Hi, I was so happy to find this support group for people/families dealing with PSC. I am 26 years old, I have Crohn's disease and was diagnosed with PSC this past summer. I have been feeling okay, so far my liver hasn't been damaged. I have been looking all over for as much info I can get on PSC, wanting to know everything...that's why I was so happy to find this support group! Amy Get your email and see which of your friends are online - Right on the new Yahoo.com Check out the New Yahoo! Mail - Fire up a more powerful email and get things done faster. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2006 Report Share Posted November 5, 2006 Hallo, I'm a new italian member, too. Sorry for my english and thank you to be here. I'm reading all the old mails and this helps me very much. I have coeliac disease, and, only from an year PSC, diagnosed after a icterus. Now I'm try to have a normal life and I'm working in my splendid ancient library in Roma, even if I have already pain, fatigue and so on, but my blood is less or more normal. I hope you (and I) can live a normal life even with PSC, because I want to work and to continue to be a greek paleograph, as before this bad period. Thank you. betta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2006 Report Share Posted November 5, 2006 Hallo, I'm a new italian member, too. Sorry for my english and thank you to be here. I'm reading all the old mails and this helps me very much. I have coeliac disease, and, only from an year PSC, diagnosed after a icterus. Now I'm try to have a normal life and I'm working in my splendid ancient library in Roma, even if I have already pain, fatigue and so on, but my blood is less or more normal. I hope you (and I) can live a normal life even with PSC, because I want to work and to continue to be a greek paleograph, as before this bad period. Thank you. betta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2006 Report Share Posted November 5, 2006 Hallo, I'm a new italian member, too. Sorry for my english and thank you to be here. I'm reading all the old mails and this helps me very much. I have coeliac disease, and, only from an year PSC, diagnosed after a icterus. Now I'm try to have a normal life and I'm working in my splendid ancient library in Roma, even if I have already pain, fatigue and so on, but my blood is less or more normal. I hope you (and I) can live a normal life even with PSC, because I want to work and to continue to be a greek paleograph, as before this bad period. Thank you. betta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2006 Report Share Posted November 6, 2006 Amy, Welcome to the group! Sorry you have a reason to be here at all, but I'm happy you found us. I was diagnosed at 26 years old, too, but it took me years to find this group. Now, I don't know how I did it without them! Ask any questions you'd like - we're here to help! Best wishes, Deb in VA PSC 1998, UC 1999, Listed Ltx 2001, LDLTX 5/19/2005, Partial Portal Vein Thrombosis 7/20/05, 3 sinus surgeries '06, Osteopenia 7/06. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2006 Report Share Posted November 6, 2006 Amy, Welcome to the group! Sorry you have a reason to be here at all, but I'm happy you found us. I was diagnosed at 26 years old, too, but it took me years to find this group. Now, I don't know how I did it without them! Ask any questions you'd like - we're here to help! Best wishes, Deb in VA PSC 1998, UC 1999, Listed Ltx 2001, LDLTX 5/19/2005, Partial Portal Vein Thrombosis 7/20/05, 3 sinus surgeries '06, Osteopenia 7/06. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2006 Report Share Posted November 6, 2006 Amy, Welcome to the group! Sorry you have a reason to be here at all, but I'm happy you found us. I was diagnosed at 26 years old, too, but it took me years to find this group. Now, I don't know how I did it without them! Ask any questions you'd like - we're here to help! Best wishes, Deb in VA PSC 1998, UC 1999, Listed Ltx 2001, LDLTX 5/19/2005, Partial Portal Vein Thrombosis 7/20/05, 3 sinus surgeries '06, Osteopenia 7/06. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2006 Report Share Posted November 6, 2006 hello betta, Welcome. Sorry you are here but the support on this site from embers is tremendous. You will learn a lot and members are ready to help with suggestions, etc from their own experiences. There is a wealth of information from members. Take care of yourself and never hesitate to ask members for advice, etc because so many are ready to help. I have learnt a lot here which has helped me as I try to guide my son who has PSC and ulcerative colitis. Rita (Florida) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2006 Report Share Posted November 8, 2006 --- In> > I will keep eveyone up to speed on my progress and findings. Has > anyone else tried and had good results with the naturopath community? > > > Hi , Welcome to the group. I am also new and do not post because I am just learning. I am one who cannot take most drugs without serious side effects including Urso and Asacol so I have checked into alternative meds. One member posted about an MD, www.liverdoctor.com. She does talk about PSC and recommends no gluten and no dairy. I started dairy- free 6 months before Dx and it really helped the UC, I am also gluten sensitive but did not really do much about it so I decided to do gluten -free also. There are so many products on the market now it is really not that hard. She also recommends raw juicing which I have started. Since I cannot do the drugs I really owe it to myself to try. Barb in Texas posted some clinical trials to check out, one using DHA and one using Probiotics both of which I already use. I am interested in the doesage. I have more than a few autoimmune diseases including total hair loss at age 23 yrs. so I am hoping that this may help me feel better. Marsha Dx 2006, PSC and UC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2010 Report Share Posted November 22, 2010 Hi Jade, The behaviors you describe are sadly familiar. And your parents' relationship dynamic sounds sadly familiar also; my Queen/Witch nada (yes, that is slang here for bpd mom, from " not a mom " ) married a sweet but passive, enabling, rescuer kind of man. I'm glad that you've had the validation from your dad and from counselors that your mother very likely has personality disorder, which helps place the behaviors in perspective and lets you understand that its not you causing her to act out in such hostile ways. And I'm glad that your reading and educating yourself about bpd; knowledge is empowering. If you are determined to have Thanksgiving dinner with your parents, then, the only things that occur to me that might lessen or possibly eliminate the emotional abuse are (1.) only arrive just before the meal and leave shortly after the meal, so you're only there for about an hour and (2.) bring a friend with you. My bpd/npd nada tends to behave herself around other people; she only turns really nasty on me when I'm alone with her. But if your mother turns abusive even if a friend is with you, at least you'll have a witness. And if she turns ugly you and your friend can simply leave, even if the meal has just started. Its difficult, but you need to resign yourself to the idea that no matter what you do or don't do, say or don't say, your mother will very likely shriek at you that you've " ruined " the holiday. That's part of what personality disorder is: inappropriate rage and other inappropriate and abusive emotional reactions. You can't change your mentally ill mother's hostile, toxic behaviors, but you can decide that you won't put up with them any longer. You can set and maintain boundaries or rules for yourself. Such as, for example, you can decide that you won't tolerate being cursed at. If your mother curses at you and calls you shockingly ugly names, you can say something like this in a very calm, neutral voice: " I'm not for cursing at, mother. I'm not going to stay and listen when you treat me like that. I'm leaving now. 'Bye. " And you leave. Setting and maintaining boundaries isn't easy, but in my opinion its much healthier and more adult than just being a doormat or a punching bag and taking abuse. But each of us has to figure out for herself or himself what we can tolerate, what we can't tolerate, and what we're willing to do about it. Its an individual path each of us must find. -Annie > > Hello all, > > I am the daughter of a mother with BPD. Wow, that is the first time I have really said anything like that out loud. I have been in and out of counseling for about 3 years now, and while my mother will NEVER admit that she needs some amount of counseling, between discussions with my father, his counselor, my counselor, we have determined that my mother suffers for BPD. I have recently read a few books about BPD, and it was like reading about my mother in a book, that was the only way to describe it. I could hear and picture my mothers voice while reading the books. > > Over the past three years (I am in my early twenties and an only child) I have steadily learned ways how to deal with my mother (or, from reading the other posts, I believe you refer to her as nada?) However, I have no one to really talk to who is going through the same thing. My father is extremely passive, and has always let my mother run over the top of both of us (He has never stood up to her)and is always trying to smooth the situation over. > > I will be going home for thanksgiving this week, and I am currently suffering from minor panic attacks because of this. This is because I know that when I go home, i will inevitably be attacked by my mother at some point or another. I am trying my best here, but I constantly feel like I am walking on egg shells. > > My mother is extremely obese and only leaves the house once a week to go grocery shopping. She has only one friend (who speaks to her sparatically), and speaks to no one in her family (all other friends and family have since cut her off). Therefore, my father and I get the brunt of everything. One time she screamed at me because I bought a book (it was $6 and I bought it with my money) and didn't use a coupon. My mother starts an argument at least once a day. She has only threatened suicide once, and I told her that if she ever did it again,I would call the police and report her. She has not done this since, and that was 3 years ago. > > Last year, my mother blamed me for " ruining thanksgiving. " What really happened was my mother screamed and picked at me all day long until I finally told her " enough " and she burst into tears and said that I ruined thanksgiving, like I ruin everyday in general and every holiday. She proceed to cry into her turkey about how I was a terrible child and then ordered me to go upstairs into my room. > When I went up there, she ordered me to " get down here you little c*nt, I cooked you dinner and you will F*cking eat it! " I came down and sat at the table and began to cry, I couldn't help it. She proceed to scream at me the rest of the night. > > > This year, she has already started with " you better not ruin thanksgiving this year like you did last year. " I am in a situation where I have no choice but to go home for thanksgiving. I would really appreciate some advice as to how to deal with this situation. > > Thank you so much for this wonderful safe place, > > Jade > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2010 Report Share Posted November 22, 2010 Hi Jade, The behaviors you describe are sadly familiar. And your parents' relationship dynamic sounds sadly familiar also; my Queen/Witch nada (yes, that is slang here for bpd mom, from " not a mom " ) married a sweet but passive, enabling, rescuer kind of man. I'm glad that you've had the validation from your dad and from counselors that your mother very likely has personality disorder, which helps place the behaviors in perspective and lets you understand that its not you causing her to act out in such hostile ways. And I'm glad that your reading and educating yourself about bpd; knowledge is empowering. If you are determined to have Thanksgiving dinner with your parents, then, the only things that occur to me that might lessen or possibly eliminate the emotional abuse are (1.) only arrive just before the meal and leave shortly after the meal, so you're only there for about an hour and (2.) bring a friend with you. My bpd/npd nada tends to behave herself around other people; she only turns really nasty on me when I'm alone with her. But if your mother turns abusive even if a friend is with you, at least you'll have a witness. And if she turns ugly you and your friend can simply leave, even if the meal has just started. Its difficult, but you need to resign yourself to the idea that no matter what you do or don't do, say or don't say, your mother will very likely shriek at you that you've " ruined " the holiday. That's part of what personality disorder is: inappropriate rage and other inappropriate and abusive emotional reactions. You can't change your mentally ill mother's hostile, toxic behaviors, but you can decide that you won't put up with them any longer. You can set and maintain boundaries or rules for yourself. Such as, for example, you can decide that you won't tolerate being cursed at. If your mother curses at you and calls you shockingly ugly names, you can say something like this in a very calm, neutral voice: " I'm not for cursing at, mother. I'm not going to stay and listen when you treat me like that. I'm leaving now. 'Bye. " And you leave. Setting and maintaining boundaries isn't easy, but in my opinion its much healthier and more adult than just being a doormat or a punching bag and taking abuse. But each of us has to figure out for herself or himself what we can tolerate, what we can't tolerate, and what we're willing to do about it. Its an individual path each of us must find. -Annie > > Hello all, > > I am the daughter of a mother with BPD. Wow, that is the first time I have really said anything like that out loud. I have been in and out of counseling for about 3 years now, and while my mother will NEVER admit that she needs some amount of counseling, between discussions with my father, his counselor, my counselor, we have determined that my mother suffers for BPD. I have recently read a few books about BPD, and it was like reading about my mother in a book, that was the only way to describe it. I could hear and picture my mothers voice while reading the books. > > Over the past three years (I am in my early twenties and an only child) I have steadily learned ways how to deal with my mother (or, from reading the other posts, I believe you refer to her as nada?) However, I have no one to really talk to who is going through the same thing. My father is extremely passive, and has always let my mother run over the top of both of us (He has never stood up to her)and is always trying to smooth the situation over. > > I will be going home for thanksgiving this week, and I am currently suffering from minor panic attacks because of this. This is because I know that when I go home, i will inevitably be attacked by my mother at some point or another. I am trying my best here, but I constantly feel like I am walking on egg shells. > > My mother is extremely obese and only leaves the house once a week to go grocery shopping. She has only one friend (who speaks to her sparatically), and speaks to no one in her family (all other friends and family have since cut her off). Therefore, my father and I get the brunt of everything. One time she screamed at me because I bought a book (it was $6 and I bought it with my money) and didn't use a coupon. My mother starts an argument at least once a day. She has only threatened suicide once, and I told her that if she ever did it again,I would call the police and report her. She has not done this since, and that was 3 years ago. > > Last year, my mother blamed me for " ruining thanksgiving. " What really happened was my mother screamed and picked at me all day long until I finally told her " enough " and she burst into tears and said that I ruined thanksgiving, like I ruin everyday in general and every holiday. She proceed to cry into her turkey about how I was a terrible child and then ordered me to go upstairs into my room. > When I went up there, she ordered me to " get down here you little c*nt, I cooked you dinner and you will F*cking eat it! " I came down and sat at the table and began to cry, I couldn't help it. She proceed to scream at me the rest of the night. > > > This year, she has already started with " you better not ruin thanksgiving this year like you did last year. " I am in a situation where I have no choice but to go home for thanksgiving. I would really appreciate some advice as to how to deal with this situation. > > Thank you so much for this wonderful safe place, > > Jade > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2010 Report Share Posted November 22, 2010 Hi Jade, The behaviors you describe are sadly familiar. And your parents' relationship dynamic sounds sadly familiar also; my Queen/Witch nada (yes, that is slang here for bpd mom, from " not a mom " ) married a sweet but passive, enabling, rescuer kind of man. I'm glad that you've had the validation from your dad and from counselors that your mother very likely has personality disorder, which helps place the behaviors in perspective and lets you understand that its not you causing her to act out in such hostile ways. And I'm glad that your reading and educating yourself about bpd; knowledge is empowering. If you are determined to have Thanksgiving dinner with your parents, then, the only things that occur to me that might lessen or possibly eliminate the emotional abuse are (1.) only arrive just before the meal and leave shortly after the meal, so you're only there for about an hour and (2.) bring a friend with you. My bpd/npd nada tends to behave herself around other people; she only turns really nasty on me when I'm alone with her. But if your mother turns abusive even if a friend is with you, at least you'll have a witness. And if she turns ugly you and your friend can simply leave, even if the meal has just started. Its difficult, but you need to resign yourself to the idea that no matter what you do or don't do, say or don't say, your mother will very likely shriek at you that you've " ruined " the holiday. That's part of what personality disorder is: inappropriate rage and other inappropriate and abusive emotional reactions. You can't change your mentally ill mother's hostile, toxic behaviors, but you can decide that you won't put up with them any longer. You can set and maintain boundaries or rules for yourself. Such as, for example, you can decide that you won't tolerate being cursed at. If your mother curses at you and calls you shockingly ugly names, you can say something like this in a very calm, neutral voice: " I'm not for cursing at, mother. I'm not going to stay and listen when you treat me like that. I'm leaving now. 'Bye. " And you leave. Setting and maintaining boundaries isn't easy, but in my opinion its much healthier and more adult than just being a doormat or a punching bag and taking abuse. But each of us has to figure out for herself or himself what we can tolerate, what we can't tolerate, and what we're willing to do about it. Its an individual path each of us must find. -Annie > > Hello all, > > I am the daughter of a mother with BPD. Wow, that is the first time I have really said anything like that out loud. I have been in and out of counseling for about 3 years now, and while my mother will NEVER admit that she needs some amount of counseling, between discussions with my father, his counselor, my counselor, we have determined that my mother suffers for BPD. I have recently read a few books about BPD, and it was like reading about my mother in a book, that was the only way to describe it. I could hear and picture my mothers voice while reading the books. > > Over the past three years (I am in my early twenties and an only child) I have steadily learned ways how to deal with my mother (or, from reading the other posts, I believe you refer to her as nada?) However, I have no one to really talk to who is going through the same thing. My father is extremely passive, and has always let my mother run over the top of both of us (He has never stood up to her)and is always trying to smooth the situation over. > > I will be going home for thanksgiving this week, and I am currently suffering from minor panic attacks because of this. This is because I know that when I go home, i will inevitably be attacked by my mother at some point or another. I am trying my best here, but I constantly feel like I am walking on egg shells. > > My mother is extremely obese and only leaves the house once a week to go grocery shopping. She has only one friend (who speaks to her sparatically), and speaks to no one in her family (all other friends and family have since cut her off). Therefore, my father and I get the brunt of everything. One time she screamed at me because I bought a book (it was $6 and I bought it with my money) and didn't use a coupon. My mother starts an argument at least once a day. She has only threatened suicide once, and I told her that if she ever did it again,I would call the police and report her. She has not done this since, and that was 3 years ago. > > Last year, my mother blamed me for " ruining thanksgiving. " What really happened was my mother screamed and picked at me all day long until I finally told her " enough " and she burst into tears and said that I ruined thanksgiving, like I ruin everyday in general and every holiday. She proceed to cry into her turkey about how I was a terrible child and then ordered me to go upstairs into my room. > When I went up there, she ordered me to " get down here you little c*nt, I cooked you dinner and you will F*cking eat it! " I came down and sat at the table and began to cry, I couldn't help it. She proceed to scream at me the rest of the night. > > > This year, she has already started with " you better not ruin thanksgiving this year like you did last year. " I am in a situation where I have no choice but to go home for thanksgiving. I would really appreciate some advice as to how to deal with this situation. > > Thank you so much for this wonderful safe place, > > Jade > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2011 Report Share Posted January 6, 2011 Greetings , adult children of BPD parents. I'm new here, but not new to BPD or coping with its effects. I'm here to learn & listen - perhaps even extend a hand of support or sympathy if needed. Thanks... Quote Link to comment Share on other sites More sharing options...
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