Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 It is confirmed You ARE Normal!!!!!!!!!! If you can either watch the self documentry or read the book Crazy Sexy Cancer. The feeling this young lady writes about hit the nail on the head for me. What you are feeling and trying wrap your brain around is soooooooo very normal. I think it is a pretty universal feeling. I am a nurse, suppose to be treating pt's not being the pt. I am still working part time and it cracks me up, because I am " sicker " than many of my pt's!! Some times I want to say, you get out of the bed and I would be happy to lay down for awhile today! PSC 5/07 stage IV Listed Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 It is confirmed You ARE Normal!!!!!!!!!! If you can either watch the self documentry or read the book Crazy Sexy Cancer. The feeling this young lady writes about hit the nail on the head for me. What you are feeling and trying wrap your brain around is soooooooo very normal. I think it is a pretty universal feeling. I am a nurse, suppose to be treating pt's not being the pt. I am still working part time and it cracks me up, because I am " sicker " than many of my pt's!! Some times I want to say, you get out of the bed and I would be happy to lay down for awhile today! PSC 5/07 stage IV Listed Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 I do. I wake up some days and think " I have a DISEASE! " , which is weird since I was diagnosed with CD years ago. But this is the first time I have ever felt like I am truly 'dis-eased'. Sometimes it really pisses me off, and sometimes I say ok, God, I accept this challenge. I think finding out I can not get life insurance was the big moment for me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 I do. I wake up some days and think " I have a DISEASE! " , which is weird since I was diagnosed with CD years ago. But this is the first time I have ever felt like I am truly 'dis-eased'. Sometimes it really pisses me off, and sometimes I say ok, God, I accept this challenge. I think finding out I can not get life insurance was the big moment for me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 Thanks – I’ll check it out! Nita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 Thanks – I’ll check it out! Nita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 Wow – never thought about the life insurance thing… I live in fear of not being able to work and losing my great health insurance! Nita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 ee, Life insurance was a big one for me too….. Since my wife and I had just been married and had no family when I got my diagnosis, I had never taken out a policy on myself – so here I am the breadwinner and I have no life insurance! It is interesting though that the underwriter said that the condition of PSC is not a dealbreaker for a 10 or 20 year term policy – only if the bloodwork reveals high levels. So – those of you with PSC and labwork that is still in the normal range – you probably have a shot at getting life insurance. As for myself – I had to settle for a smaller group life plan through my business and a supplemental “accidental” policy. It’s not great, but it is all that I can get. Rick From: [mailto: ] On Behalf Of shawnee618 Sent: Friday, January 09, 2009 9:17 PM To: Subject: Re: Mental shift I do. I wake up some days and think " I have a DISEASE! " , which is weird since I was diagnosed with CD years ago. But this is the first time I have ever felt like I am truly 'dis-eased'. Sometimes it really pisses me off, and sometimes I say ok, God, I accept this challenge. I think finding out I can not get life insurance was the big moment for me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 ee, Life insurance was a big one for me too….. Since my wife and I had just been married and had no family when I got my diagnosis, I had never taken out a policy on myself – so here I am the breadwinner and I have no life insurance! It is interesting though that the underwriter said that the condition of PSC is not a dealbreaker for a 10 or 20 year term policy – only if the bloodwork reveals high levels. So – those of you with PSC and labwork that is still in the normal range – you probably have a shot at getting life insurance. As for myself – I had to settle for a smaller group life plan through my business and a supplemental “accidental” policy. It’s not great, but it is all that I can get. Rick From: [mailto: ] On Behalf Of shawnee618 Sent: Friday, January 09, 2009 9:17 PM To: Subject: Re: Mental shift I do. I wake up some days and think " I have a DISEASE! " , which is weird since I was diagnosed with CD years ago. But this is the first time I have ever felt like I am truly 'dis-eased'. Sometimes it really pisses me off, and sometimes I say ok, God, I accept this challenge. I think finding out I can not get life insurance was the big moment for me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 Wow Rick, I had no idea! I have normal labs and no symptoms, I guess I have a shot and should look into it. Thank you! > > ee, > > > > condition of PSC is not a dealbreaker for a 10 or 20 year term policy - only > if the bloodwork reveals high levels. So - those of you with PSC and > labwork that is still in the normal range - you probably have a shot at > getting life insurance. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 Wow Rick, I had no idea! I have normal labs and no symptoms, I guess I have a shot and should look into it. Thank you! > > ee, > > > > condition of PSC is not a dealbreaker for a 10 or 20 year term policy - only > if the bloodwork reveals high levels. So - those of you with PSC and > labwork that is still in the normal range - you probably have a shot at > getting life insurance. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 Wow Rick, I had no idea! I have normal labs and no symptoms, I guess I have a shot and should look into it. Thank you! > > ee, > > > > condition of PSC is not a dealbreaker for a 10 or 20 year term policy - only > if the bloodwork reveals high levels. So - those of you with PSC and > labwork that is still in the normal range - you probably have a shot at > getting life insurance. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 Oh I so hear that! My FIL, who lives here, has cirrhosis and prostate cancer. His cancer prognosis is great, about 5 years, and at 78years old that is fantastic. His cirrhosis is due to alcoholism, and he still chooses to drink after being given such a good prognosis. It is sad and ironic that he is 78, has cancer, and will likely die from liver failure due to his choices. I don't judge him, but it sure does frustrate me. ee > > I work f/time in a rehab setting for people with brain injury and > mental health issues. I hear you. While I can't say my own situation > is as advanced as yours, there are days where I get very frustrated > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 Oh I so hear that! My FIL, who lives here, has cirrhosis and prostate cancer. His cancer prognosis is great, about 5 years, and at 78years old that is fantastic. His cirrhosis is due to alcoholism, and he still chooses to drink after being given such a good prognosis. It is sad and ironic that he is 78, has cancer, and will likely die from liver failure due to his choices. I don't judge him, but it sure does frustrate me. ee > > I work f/time in a rehab setting for people with brain injury and > mental health issues. I hear you. While I can't say my own situation > is as advanced as yours, there are days where I get very frustrated > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 I am an addictions counselor and I have a very difficult time when I get clients who are referred from the transplant centers, who just have to show 6 months of sobriety so that they can obtain a liver transplant. I no longer work with these clients because I find it so difficult to keep my mouth shut. Dawn > > Oh I so hear that! My FIL, who lives here, has cirrhosis and > prostate cancer. His cancer prognosis is great, about 5 years, and at > 78years old that is fantastic. His cirrhosis is due to alcoholism, and > he still chooses to drink after being given such a good prognosis. It > is sad and ironic that he is 78, has cancer, and will likely die from > liver failure due to his choices. I don't judge him, but it sure does > frustrate me. > > ee > > > > I work f/time in a rehab setting for people with brain injury and > > mental health issues. I hear you. While I can't say my own situation > > is as advanced as yours, there are days where I get very frustrated > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 I am an addictions counselor and I have a very difficult time when I get clients who are referred from the transplant centers, who just have to show 6 months of sobriety so that they can obtain a liver transplant. I no longer work with these clients because I find it so difficult to keep my mouth shut. Dawn > > Oh I so hear that! My FIL, who lives here, has cirrhosis and > prostate cancer. His cancer prognosis is great, about 5 years, and at > 78years old that is fantastic. His cirrhosis is due to alcoholism, and > he still chooses to drink after being given such a good prognosis. It > is sad and ironic that he is 78, has cancer, and will likely die from > liver failure due to his choices. I don't judge him, but it sure does > frustrate me. > > ee > > > > I work f/time in a rehab setting for people with brain injury and > > mental health issues. I hear you. While I can't say my own situation > > is as advanced as yours, there are days where I get very frustrated > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 I wanted to add to my last comment, I actually work with co-ccurring disorders so most of my clients have significant mental health concerns and substance abuse but it has just gotten really difficult to handle the transplant center clients lately. I am seeking alternative work, but I am in private practice and we are well established as we have been there for 15 years, this is not a good time for change! What do you do!! Dawn > > > > Oh I so hear that! My FIL, who lives here, has cirrhosis and > > prostate cancer. His cancer prognosis is great, about 5 years, and > at > > 78years old that is fantastic. His cirrhosis is due to alcoholism, > and > > he still chooses to drink after being given such a good prognosis. > It > > is sad and ironic that he is 78, has cancer, and will likely die > from > > liver failure due to his choices. I don't judge him, but it sure > does > > frustrate me. > > > > ee > > > > > > I work f/time in a rehab setting for people with brain injury and > > > mental health issues. I hear you. While I can't say my own > situation > > > is as advanced as yours, there are days where I get very > frustrated > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 That’s funny – me too ======================= I have lamented several times since diagnosis, that after all the alcoholics I have known and put up with in my life, I get liver disease! Pfft! lol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 Yes, it is hard to think about. I liken it to the curse in Sleeping Beauty. I may feel fine today but one day I will just fall ill from having pricked my finger. It is absurd. Now that I am over the initial shock, it is odd to think that I am just going about my business while my liver is failing.KarlaTo: Sent: Friday, January 9, 2009 3:36:14 PMSubject: Mental shift OK, here's another question for you guys... Are any of you having a hard time getting your brain around the fact that your liver is going gunnysack and you need a new one? I always thought of myself as more the organ donor type - not the organ recipient type. I still can't believe I have a life-threatening illness. Let alone such a weird one. Nita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 Yes, it is hard to think about. I liken it to the curse in Sleeping Beauty. I may feel fine today but one day I will just fall ill from having pricked my finger. It is absurd. Now that I am over the initial shock, it is odd to think that I am just going about my business while my liver is failing.KarlaTo: Sent: Friday, January 9, 2009 3:36:14 PMSubject: Mental shift OK, here's another question for you guys... Are any of you having a hard time getting your brain around the fact that your liver is going gunnysack and you need a new one? I always thought of myself as more the organ donor type - not the organ recipient type. I still can't believe I have a life-threatening illness. Let alone such a weird one. Nita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 Yes, it is hard to think about. I liken it to the curse in Sleeping Beauty. I may feel fine today but one day I will just fall ill from having pricked my finger. It is absurd. Now that I am over the initial shock, it is odd to think that I am just going about my business while my liver is failing.KarlaTo: Sent: Friday, January 9, 2009 3:36:14 PMSubject: Mental shift OK, here's another question for you guys... Are any of you having a hard time getting your brain around the fact that your liver is going gunnysack and you need a new one? I always thought of myself as more the organ donor type - not the organ recipient type. I still can't believe I have a life-threatening illness. Let alone such a weird one. Nita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2009 Report Share Posted January 11, 2009 Hi! I thought I'd chime in again on the " guilt " thing. I don't feel guilty that someone had to die for me to have a liver. That's not in my hands and I truly believe that to donate organs is a gift. I've been a donor since I was 16 years old and I believe everyone should give somebody else that gift if possible. I feel like it's an honor in a way to allow somebody else to live on through me or for somebody else to allow me to live on through them. What I feel a bit guilty about is the fact that I'm sort of wishing for somebody to be ill or die when I wish to get a new liver and ductwork. Does that make sense to anyone? Sandi in VA Quote Link to comment Share on other sites More sharing options...
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