Guest guest Posted April 29, 2006 Report Share Posted April 29, 2006 The hardest part of this disease is not knowing what course it is going to take. Since being diagnoised last month, I have had a range of emotions. I have never been freaked out. I guess by the grace of God. I think it might have been better not even knowing I had it. Ignorance is bliss. Some of the emotions I have felt are the following. Frustration, the feeling this monster would go ahead and strike and get it over with. When I have these thoughts, I feel guilty because it so selfish. My wife just lost her son Feb 9 of this year and she really needs to hang on to me as long as she can. I know that I have to live my life. I just can't put my life on hold. And I will not give into that. I plan on living my life as if I didn't even have this dreadful disease. There is always hope. any thoughts? clint Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2006 Report Share Posted April 29, 2006 Clint, I was diagnosed with PSC and UC in 1984, but my first case of jaundice was 3 years prior to that. I was told then, at the age of 20, that I only had 3-5 years to live without a transplant. Yet, here I am -- I just celebrated my 43rd birthday! During this time I have enjoyed many, many things...I watched my daughter grow up (something I was told I wouldn't get to do, since she was only 4 mo. old when I was diagnosed), traveled, earned a college degree, loved many foster children, and seen the birth of several beautiful nieces and nephews. I suffered losses too, such as the death of my parents, but they were blessed that I outlived them -- something they never thought would happen! I was listed for transplant in 2005, due to recurrent cholangitis attacks and this year has been my worst year since 1997 (when we discovered I have chronic pancreatitis). If this upcoming year turns out to be my worst ever, I still cannot complain (although sometimes I do whine a bit!). I've said all that to say this, please, live life to the fullest even though you have PSC. I don't recommend pretending that you don't have it, though. I suggest listening carefully to your body and heeding what it says. Learn your limits (and they will vary throughout the course of this disease) and vow to work with them. Listen to your doctors, but don't let them dictate every decision you make, always follow your gut -- no one knows your body like you do. Educate yourself so you know what the doctors are talking about and know when they err. Take your medications and treat yourself with tender, loving care. I'm living proof that this disease does not move rapidly in all patients, nor that it has to be allowed to dictate who you are. I believe I am a true walking (although I lay more lately) :0) miracle. I have multiple health conditions including Rheumatoid Arthritis, Raynauds Phenomenon, and a clotting disorder (history of blood clots in legs and lungs) just to name a few -- all of which can be serious without the added complications of PSC and UC. However, I get up nearly every morning and have a cup of coffee and a good laugh! I have learned the greatest thing about having this disease is that it has made me braver -- I'm not afraid to love with all my heart, to take risks, or to face death. It has made my vision sharper -- I now see the beauty in most things. And, it has helped me to keep my conscience clearer. So, love and support your wife with all your might, AND let her do the same. Love, laugh, live and fight PSC with all your might, but don't let it consume you. Take care and feel free to write any time. You may even email me privately if you wish, if you have any additional questions for me. I must thank you for posting your email. It gave me the opportunity to remember and share the blessings that I have and to be grateful! Life really has been good -- thanks for the reminder! Here's to many wonderful, love filled, HEALTHY years!! (MO)PSC & UC '84, chronic pancreatitis '97, listed for tx 06/05for details see www.caringbridge.org/visit/melaniejs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2006 Report Share Posted April 29, 2006 MO425@... wrote: > I've said all that to say this, please, live life to the fullest even > though you have PSC. I don't recommend pretending that you don't have > it, though. I suggest listening carefully to your body and heeding what > it says. Learn your limits (and they will vary throughout the course of > this disease) and vow to work with them. Listen to your doctors, but > don't let them dictate every decision you make, always follow your gut > -- no one knows your body like you do. Educate yourself so you know > what the doctors are talking about and know when they err. Take your > medications and treat yourself with tender, loving care. I'm living > proof that this disease does not move rapidly in all patients, nor that > it has to be allowed to dictate who you are. ...... > > So, love and support your wife with all your might, AND let her do the > same. Love, laugh, live and fight PSC with all your might, but don't > let it consume you. Clint, I second everything which has said so very well. I was about to respond to you when I noticed had already done so. She has said EXACTLY what I was going to say!! So, thanks for saving me the strength on this one. Regards, Carolyn B. in SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2006 Report Share Posted April 30, 2006 Anytime, Clint! Good luck! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2006 Report Share Posted April 30, 2006 thanks to everyone for responding clint > > > I've said all that to say this, please, live life to the fullest even > > though you have PSC. I don't recommend pretending that you don't have > > it, though. I suggest listening carefully to your body and heeding what > > it says. Learn your limits (and they will vary throughout the course of > > this disease) and vow to work with them. Listen to your doctors, but > > don't let them dictate every decision you make, always follow your gut > > -- no one knows your body like you do. Educate yourself so you know > > what the doctors are talking about and know when they err. Take your > > medications and treat yourself with tender, loving care. I'm living > > proof that this disease does not move rapidly in all patients, nor that > > it has to be allowed to dictate who you are. ...... > > > > So, love and support your wife with all your might, AND let her do the > > same. Love, laugh, live and fight PSC with all your might, but don't > > let it consume you. > > > > Clint, > > I second everything which has said so very well. I was about to > respond to you when I noticed had already done so. She has said > EXACTLY what I was going to say!! So, thanks for saving me the > strength on this one. > > > Regards, > Carolyn B. in SC > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2006 Report Share Posted May 6, 2006 Clint It sounds to me that you are on the right track and ahead of the game. Best jd, 45 UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3 Southern, IL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2006 Report Share Posted May 7, 2006 Thanks JD clint UC 1979 PSC 2006 > > Clint > > It sounds to me that you are on the right track and ahead of the game. > > Best > jd, 45 > UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3 > Southern, IL > Quote Link to comment Share on other sites More sharing options...
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