Guest guest Posted June 26, 2007 Report Share Posted June 26, 2007 Let me know how it goes. >>> " S D " 6/25/2007 9:10 AM >>> I agree, she has to decide. The goal is to present the facts about my situation without allowing my agenda to influence my presentation...because my " agenda " is obviously to not get rejected...as we all hate rejection. thanks linda... Wilkinson wrote: I think the girl has the right to decide if she wants to be with you or not. It doesn't seem fair that you make that decision for her. You could live many, many years. You could die of old age before PSC even thinks about becoming a problem. Don't live your life expecting the worse. I believe a positive attitude goes a very long way with your health. I have someone in my life and I do have those down moments when I think that he would be better off with someone else. Now my health is really great but I worry about when that time comes when it isn't. I do have those rare times when I'm just too tired to keep up but he understands and it's ok. He told me that this is where he wants to be. I was told once not to live life like I was dying. I should die while I was living life. I don't know if that makes any sense to anybody else but it made tons of sense to me. Good Luck! PSC '01 >>> " sdggn76 " 6/22/2007 7:40 PM >>> 24yr old male diagnosed with stage 2-3 PSC about a year ago at the Mayo Clinic in MN. My only symptom was elevated liver enzymes. I have since started taking Urso250 and my enzymes are back to normal. Now my doc in Chicago wants me to go back to Mayo to get another biopsy to see where things are. I started dating a girl recently and have yet to tell her that I have PSC, especially since I still feel like I don't know much about it...but I wonder...I started thinking from a girl's point of view...would I want to date a guy who will most likely take a turn for the worse sometime in the next 10 or so years??...right when we might have kids running around? In looking out for her, shouldn't I just break things off before she/I get super attached? I just can't justify starting a new relationship when the statistics are not on my side...but then again I stilll don't know much about the disease. Where would you all go for the most up to date information on the disease? I know I must sound very pessimistic about the girl but..I already know she wants to have lots of kids and all this...as a guy who has a disease which carries with it a median life expectancy of 9-12 years after dianosis I just can't see how it would work...with her or any girl......but I need to learn much more about the disease...I could use some uplifting stories/examples because thus far I've only found depressing info/stories...isnt there anyone out there that lived a long/healthy life post diagnosis?? =========================================================== 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. ETMC has implemented secure messaging for certain types of messages. For more information about our secure messaging system, go to: http://www.etmc.org/mail/ Thank you. =========================================================== BEGIN:VCARD VERSION:2.1 X-GWTYPE:USER FN:Wilkinson, ORG:;Human Resources EMAIL;WORK;PREF;NGW:lindawilkinson@... N:Wilkinson; END:VCARD --------------------------------- Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games. =========================================================== 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. ETMC has implemented secure messaging for certain types of messages. For more information about our secure messaging system, go to: http://www.etmc.org/mail/ Thank you. =========================================================== BEGIN:VCARD VERSION:2.1 X-GWTYPE:USER FN:Wilkinson, ORG:;Human Resources EMAIL;WORK;PREF;NGW:lindawilkinson@... N:Wilkinson; END:VCARD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2007 Report Share Posted June 26, 2007 I'll just belatedly put in my experience with PSC and a committed relationship. I had my first date with a young man the week before I was diagnosed with PSC. That first date was over 15 years ago. We married 3 years later, have a daughter, careers- a normal life. He reminded me recently, after a medical setback, that after my diagnosis I was sure my life was already over. In his youthful optimism he believed that I would be fine forever, and even if it wasn't forever, he still wanted whatever time we were given together. That first date was less than a year after his father had lost his ten-year battle with MS. He knew the territory of chronic illness, and yet he bravely crossed its borders. Whether he was foolish or wise, we bound our fates together. He has alread offered to be my donor if it becomes necessary. I don't know how I got so lucky, but he's not the only person out there who can pass the PSC test! Good luck, Martha (MA) UC 1979, PSC 1992; asymptomatic > I started dating a girl recently and have yet to tell her that I have > PSC, especially since I still feel like I don't know much about > it...but I wonder...I started thinking from a girl's point of > view...would I want to date a guy who will most likely take a turn for > the worse sometime in the next 10 or so years??...right when we might > have kids running around? In looking out for her, shouldn't I just > break things off before she/I get super attached? I just can't > justify starting a new relationship when the statistics are not on my > side...but then again I stilll don't know much about the disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2007 Report Share Posted July 4, 2007 Hi, I have not posted since January, 07. I gave myself a News Years present and stopped reading posts. I was not handling things well. I have gone from thinking about dying from this disease to I will be OK and die from something else. It was hard on my partner when I obsessed about dying and all the disease symptoms so I stopped doing it. Some update on the Clinical Trial using DHA that I am in at Beth Israel Deaconness Hospital. I drive up to Boston (5 hour drive)the day before the appointment, stay overnight, and get a 10 AM appointment with the Study Coordinator, Nutritionist and the Gastroenterologist,Dr. Steve Freedman. They take blood every visit, do weight, BP and monitor your diet. They give me 1600 mg of DHA to take every day and ask you to eat a high Omega 3 diet. I feel grateful to be able to participate because most of the liver patients in this hospital are too sick to be in the study. I was diagnosed July 06. I am quite sure I have had it a long time. I am 62 yrs. old. Only 15 people are in this study and two have completed the one year trial. The results will be posted after the last patient has completed the year. I am second to last, I believe it is also going on at the Mayo Clinic. I am also on 1500 mg. of Urso. I recently started VSL#3 probiotics made esp. for people with UC. I really think this is helping. I read about a study done in Europe using probiotics but don't know how to find out the results. Does anyone out there know the results? I see an Integrative Medicine Doctor who has given me a low does of Naltrexone to help the Immune System and also Colchicine for the scarring. My Gastro Doctor says Colchicine does not work. Anyone else know where to find out more on this. The literature only talks about Gout but a site I was on today about PSC has a picture of the liver, actigal/ colchicine, and a stint to show treatments. Since I was finally diagnosed and treated with meds, I am so much better. My Doctor stopped the Entocort I have been on and will try with just the VSL#3. Not able to take the 5 ASA's. Thanks for listening. Marsha Quote Link to comment Share on other sites More sharing options...
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