Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 This is my first time on this help site. I have a 35 year old bp daughter with a 21 month old baby. I have been dealing with her bizarre behavior for years - but now it's extremely difficult for me because my 21 mo. old gs is involved. My d seems to blame m for everything in her life that is not right. She is constantly emotionally abusing me in front on my gs. She will say anything she wants and uses such horrible language at me in front of my gs. I'm trying to get her to a therapist that deals in db therapy but I don't think she will make the appt. She says she doesn't need any help - I do. She has no friends and only 2 great aunts and myself. We are all getting very frustrated by this horrendous disorder that just seems to get more out of control as the days go by. I am so concerned about my gs's future with her. I have him with me at least 3 - 4 days a week. I would like to keep him with me permanently until maybe a miracle happens with my d. That's the only thing I can think of that will help her at this point. Anyone going through a similar ordeal? Trev2 (Cindy) We have just found out our adopted 29 yr. old daughter's problem! > After years of heartache, misdiagnosis, false guilt, etc.,we now have > a clue as to how our daughter thinks and reacts....late but hopefully > there is some redemption..... > Am hoping this website will help us with the process of learning and > changing. > We have just experienced a horrible experience of in house psychiatric > intervention from a suicidal threat...and are being blamed with rage > for " doing this to her " even though she called for help. > Through a friend's recommendation we made an appointment with a social > worker who immediately saw the pattern. > We are also trying to help with caring for her 2 year old as she is in > the process of divorce and a new job (which she hates!). > Apparently some of you have dealt with BPD and may offer support and > councel. Thank you..MS > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 Hi Freshstart, 1. experience 2. horrible experience 3. psychiatric 4. suicidal 5. threat 6. we are being blamed 7. with rage 8. " doing this to her " 9. even thouch 10. she called for help These are ten elements in that one paragraph you wrote which indicate that, yes, you are in the right place. Don't lose hope -- stay tuned to what everyone here has to offer -- including taking care of your grandchild. Deborah --- freshstartbeginagain freshstartbeginagain@...> wrote: >>We have just experienced a horrible experience of in > house psychiatric > intervention from a suicidal threat...and are being > blamed with rage > for " doing this to her " even though she called for > help. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2008 Report Share Posted July 19, 2008 Hi AJ,Welcome to the group, which I'm sure you'll find to be very supportive and knowledgeable. Here is a brochure on PSC with a lot of information:http://www.pscpartners.org/PSCBrochure.pdfAs to the 4 stages of PSC, there is no set time from one stage to the next. On AVERAGE, the time from diagnosis to the need for a liver transplant is 10 -12 years, but that is just an average. It can be much shorter, but also much longer (30 years for some people). Once you get over the shock of the diagnosis, the best you can do is live in the present time as much as possible, and enjoy life. Plan some fun in your life. Keep studying the disease so you know what to expect. Also learn about liver transplantation and how to increase your odds of getting a transplant should you need one. While this too is a scary thought, eventually you'll come to think of it as a 2nd chance at life. Most people who get a new liver do extremely well, and live a very active and normal life (the fatigue often goes away). And in case you are wondering, there is a shortage of organs for donation, so you do want to learn how to increase your chances of getting a liver. The first advice I heard was that you need to be a compliant patient. The doctor needs to know that you can follow instructions and take care of yourself, so that if you get a liver, you will be able to keep it for a long time and maintain it well. The doctors are the ones who see patients die because a liver isn't available in time. So they only want to hand out the livers to those who can take good care of the liver. If you're not a compliant patient, you're not likely to be listed for a transplant.Okay - that was a downer. But good information. You can file it away and come back to it in a year or so, if it's too much to deal with now. What is most important to remember is to keep living your life, and enjoying it.Marie To: From: joleewisdom9@...Date: Sat, 19 Jul 2008 20:58:38 +0000Subject: Just Diagnosed A year ago I had a problem with Janduce, after a year of testing and seeing four different doctors I have now been dianosed with PSC. My blood test are all coming in normal but through a ercp and mrcp they are seing that the ducts to my liver are clogging. I feel very tired all the time and I have pain on my left side. Can you direct me on what to expect, I guess I am in first stage. Is there a time limit when it goes into 2nd, third and four stages? My doctor wants to see me every 6 months, I do blood every 6 months and I am taking Atigall. Should I be doing something else? I am so confused! and lost! I would appreciate some guidance from those of us fighting this disease. Thanks AJWisdom California With Windows Live for mobile, your contacts travel with you. Connect on the go. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2008 Report Share Posted July 19, 2008 I am not a regular commenter or poster on this site, but reading your presentation sounds just like my husband's case. He was first diagnosed with PSC after he had an episode of jaundice. No pain, no other symptoms. This was 12 years ago. It took 3 doctors to definitively diagnose him. He takes Actigall daily, and has had regular ERCPs w/balloon dilatation of his bile ducts. It has been 12 great years, with minimal to no episodes of cholangitis. He hardly ever misses a day of work, only one a year after the ERCP. We feel very blessed. His gastro sees him 1x a year for the ERCP. (used to be 2x a year) His blood work fluctuates, but functionally he is doing great. We have recently explored changing diet to minimize any stress on his body and he is currently staying away from dairy, egg, wheat and corn. Pretty restrictive, but it seems to be helping. This disease seems to be quite varied on how it manifests in people. My husband was 34 when he was first diagnosed, he is now 47. We try very hard to stay focused on the present, enjoy and appreciate the moment and not worry about tomorrow. I hope this message gives you a more optomistic perspective. Kate Piazzi To: From: grahammilligan@...Date: Sat, 19 Jul 2008 23:23:50 +0000Subject: Re: Just Diagnosed HiWelcome to the group.I am sure there will be more PSC's along to welcome you.My main message is 'YOU ARE NOT ALONE WITH THIS DISEASE'.There is so much information and support available through this discussion board. Also http://www.psc-literature.org/for literature about PSC. http://www.pscpartners.org/for information about PSC Partners Seeking a Cure Foundation a nonprofit foundation that endeavors to find a cure for Primary Sclerosing CholangitisBest wishesfrom at the bottom of the world in New Zealand> Can you direct me on what to expect, I guess I am in first stage. Is > there a time limit when it goes into 2nd, third and four stages? My > doctor wants to see me every 6 months, I do blood every 6 months and I > am taking Atigall. Should I be doing something else?> > I am so confused! and lost! I would appreciate some guidance from > those of us fighting this disease. > > Thanks> AJWisdom > California> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2008 Report Share Posted July 20, 2008 While the course of the disease is variable, my guess is that you will fare quite well. Still, it is a rather frightening diagnosis at first and you wouldn't be human if you weren't " a little concerned. " I'm one of the people who has had disastrous ERCPs and would recommend MRCPs if your doctor wants to do further testing (I'm not sure where biopsy fits into the schedule since mine was done once during surgery), but others in the group sail right through multiple ERCPs without consequence. I had the beeper in hand 11 years ago this month and I am pleased to say that I returned it to the transplant department and I still have my own liver with " normal " liver function tests. Your ALK PHOS is a little high, but I wouldn't be overly concerned about that. There has been recent chatter about the use of high dose Urso and its effectiveness, but I wouldn't give mine up at this point. Your doctor may discuss it with you. As most of us say to newcomers, we're sorry you need to be here, but you've come to the right place. Many of us find out more about our illness here than from our doctors. Penny -- In , perrysmith@... wrote: > > Hi Friends: > > I was just diagnosed this week with PSC. > How do these levels bode for me? Are they bad, moderate, etc.? > > Also, I had an MRI that showed " mild indications of PSC. " >k. > > He said that I will probably be fine for more than a decade. > I have no symptoms. > > I was diagnosed with UC about 15 years ago. > > Is he being optomistic? Is there such thing as " nonprogressive PSC, " > or PSC in remission? > > What course of treatment/monitoring do you suggest? > > Thanks, > A little concerned > Quote Link to comment Share on other sites More sharing options...
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