Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 Hi Doris, I woke up during my first ERCP while they were dilating my biliary duct. YUCK! I told the doctor before the next one to be sure I didn't wake up. Before they started dilating they gave me more medication so I don't remember a thing. It took a longer to wake up but it was worth it. I am in the process of applying for SSD. I wasn't happy about it at first. To look at me I don't look sick which makes it harder for me. I have always been a hard worker. We have a nice home that we worked hard for. If there is no other choice what are you going to do. It never has to be forever, just until you get(we) get back on your feet. >From: FirnkesD@... >Reply-To: egroups >To: egroups >Subject: (no subject) >Date: Sat, 9 Oct 1999 00:11:14 EDT > >Hi: > >I have enjoyed reading all of the mail & feel like I have learned so much. > >How do they decide how much Actigall you should be on? I am on 900mg a day >to be taken at bed time with food. > >I have had a colonoscopy to verify the UC. The test it self was not bad, >but >I threw up for hours after the test. No one could ever tell me why. > >Now the ERCP I did not like at all. I woke up during the test and that was >not a pleasant experience. I also had to stay the night. I think the next >time will not be so bad because I will know more what to expect. How often >do you have to have that test? I told my Dr. I never wanted to do that >again > & he just laughed. > >Has anyone been told they just have a " mild " case? I thought it was >described as stages. I'm not sure my Dr. knows too much about the disease. >He is a GI and also seem to concentrate on my UC. > >I noticed some of you are on disability-is that SS? I went on it June of >this year. I have been sick since " 96 with RA, UC & PSC. But I feel so >guilty being on it. I know I can no longer hold down a full time job, two >of >my doctors have told me this but I feel like other people are looking at me >like it is just a cop out. I still work 8 hours a week, just to keep my >foot >in the door. But there are days when I can't even make that. The fatigue >is >just awful!! > >If any one can share there thoughts with me, I sure would appreciate it. >Has >anyone had your Dr. tell you want the transplant rate is? and how long it >usually is before you need a transplant? > >I know how each of you feel and my prayers are with you. > >Doris > >------------------------------------------------------------------------ > >eGroups.com home: /group/ > - Simplifying group communications > > > > ______________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 Hi Doris, I woke up during my first ERCP while they were dilating my biliary duct. YUCK! I told the doctor before the next one to be sure I didn't wake up. Before they started dilating they gave me more medication so I don't remember a thing. It took a longer to wake up but it was worth it. I am in the process of applying for SSD. I wasn't happy about it at first. To look at me I don't look sick which makes it harder for me. I have always been a hard worker. We have a nice home that we worked hard for. If there is no other choice what are you going to do. It never has to be forever, just until you get(we) get back on your feet. >From: FirnkesD@... >Reply-To: egroups >To: egroups >Subject: (no subject) >Date: Sat, 9 Oct 1999 00:11:14 EDT > >Hi: > >I have enjoyed reading all of the mail & feel like I have learned so much. > >How do they decide how much Actigall you should be on? I am on 900mg a day >to be taken at bed time with food. > >I have had a colonoscopy to verify the UC. The test it self was not bad, >but >I threw up for hours after the test. No one could ever tell me why. > >Now the ERCP I did not like at all. I woke up during the test and that was >not a pleasant experience. I also had to stay the night. I think the next >time will not be so bad because I will know more what to expect. How often >do you have to have that test? I told my Dr. I never wanted to do that >again > & he just laughed. > >Has anyone been told they just have a " mild " case? I thought it was >described as stages. I'm not sure my Dr. knows too much about the disease. >He is a GI and also seem to concentrate on my UC. > >I noticed some of you are on disability-is that SS? I went on it June of >this year. I have been sick since " 96 with RA, UC & PSC. But I feel so >guilty being on it. I know I can no longer hold down a full time job, two >of >my doctors have told me this but I feel like other people are looking at me >like it is just a cop out. I still work 8 hours a week, just to keep my >foot >in the door. But there are days when I can't even make that. The fatigue >is >just awful!! > >If any one can share there thoughts with me, I sure would appreciate it. >Has >anyone had your Dr. tell you want the transplant rate is? and how long it >usually is before you need a transplant? > >I know how each of you feel and my prayers are with you. > >Doris > >------------------------------------------------------------------------ > >eGroups.com home: /group/ > - Simplifying group communications > > > > ______________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 Hi Doris, I woke up during my first ERCP while they were dilating my biliary duct. YUCK! I told the doctor before the next one to be sure I didn't wake up. Before they started dilating they gave me more medication so I don't remember a thing. It took a longer to wake up but it was worth it. I am in the process of applying for SSD. I wasn't happy about it at first. To look at me I don't look sick which makes it harder for me. I have always been a hard worker. We have a nice home that we worked hard for. If there is no other choice what are you going to do. It never has to be forever, just until you get(we) get back on your feet. >From: FirnkesD@... >Reply-To: egroups >To: egroups >Subject: (no subject) >Date: Sat, 9 Oct 1999 00:11:14 EDT > >Hi: > >I have enjoyed reading all of the mail & feel like I have learned so much. > >How do they decide how much Actigall you should be on? I am on 900mg a day >to be taken at bed time with food. > >I have had a colonoscopy to verify the UC. The test it self was not bad, >but >I threw up for hours after the test. No one could ever tell me why. > >Now the ERCP I did not like at all. I woke up during the test and that was >not a pleasant experience. I also had to stay the night. I think the next >time will not be so bad because I will know more what to expect. How often >do you have to have that test? I told my Dr. I never wanted to do that >again > & he just laughed. > >Has anyone been told they just have a " mild " case? I thought it was >described as stages. I'm not sure my Dr. knows too much about the disease. >He is a GI and also seem to concentrate on my UC. > >I noticed some of you are on disability-is that SS? I went on it June of >this year. I have been sick since " 96 with RA, UC & PSC. But I feel so >guilty being on it. I know I can no longer hold down a full time job, two >of >my doctors have told me this but I feel like other people are looking at me >like it is just a cop out. I still work 8 hours a week, just to keep my >foot >in the door. But there are days when I can't even make that. The fatigue >is >just awful!! > >If any one can share there thoughts with me, I sure would appreciate it. >Has >anyone had your Dr. tell you want the transplant rate is? and how long it >usually is before you need a transplant? > >I know how each of you feel and my prayers are with you. > >Doris > >------------------------------------------------------------------------ > >eGroups.com home: /group/ > - Simplifying group communications > > > > ______________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 Peg: Thank you so much for your supportive words. My family is glad that I am finally on disability, it is just those so called aquaintances that seem to give me funny looks. My doctor once told me, " People understand cancer, they understand heart attacks, but they have no idea what you are going thru with PSC, UC & RA. " I think I just need to become a stronger person. Take care & I think your list is great!!! Doris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 Peg: Thank you so much for your supportive words. My family is glad that I am finally on disability, it is just those so called aquaintances that seem to give me funny looks. My doctor once told me, " People understand cancer, they understand heart attacks, but they have no idea what you are going thru with PSC, UC & RA. " I think I just need to become a stronger person. Take care & I think your list is great!!! Doris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 Peg: Thank you so much for your supportive words. My family is glad that I am finally on disability, it is just those so called aquaintances that seem to give me funny looks. My doctor once told me, " People understand cancer, they understand heart attacks, but they have no idea what you are going thru with PSC, UC & RA. " I think I just need to become a stronger person. Take care & I think your list is great!!! Doris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 , I've heard that applying for social security disability can be difficult and often they turn you down the first time. Some advice Jacquelyn gave me was to be real complete when you fill out the forms. We put down all three of Phil's doctors and warned them that it was coming. They need to be real strong in the description of your disease. Phil was accepted right away. He had gone on stated disability right after he got sick because he had been laid off from work the month before (nothing to do with his illness they just shut the plant down). He was looking for work when he got sick. Being 56 years old and with 4 cholangitis attacks in 4 months and having his gallbladder out he got sick real fast and has suffered the fatigue ever since. Hopefully, like him, you will feel better once you have to opportunity to rest when needed. Phil is doing a lot of volunteer work and is even trying to start a business but everything is done around his energy level. It's hard to live on my salary and his ss income but it's worth having him feel better. And if you happen to get turned down at first like some of the people have said just apply again and make your doctors be more aggresive but if they can do that in the first place maybe you'll be lucky and get it right away. Do you have state disability you can go on during the wait. They have a 5 or 6 month waiting time. We collected state until we applied for and received the fed ss and they both pay until the state runs out. Fed SS back pays you if you've been off longer than the wait time. We got about 3 months back pay and that was nice. God luck. Peg wayne bryan wrote: > Hi Doris, > I woke up during my first ERCP while they were dilating my biliary duct. > YUCK! I told the doctor before the next one to be sure I didn't wake up. > Before they started dilating they gave me more medication so I don't > remember a thing. It took a longer to wake up but it was worth it. I am > in the process of applying for SSD. I wasn't happy about it at first. To > look at me I don't look sick which makes it harder for me. I have always > been a hard worker. We have a nice home that we worked hard for. If there > is no other choice what are you going to do. It never has to be forever, > just until you get(we) get back on your feet. > > >From: FirnkesD@... > >Reply-To: egroups > >To: egroups > >Subject: (no subject) > >Date: Sat, 9 Oct 1999 00:11:14 EDT > > > >Hi: > > > >I have enjoyed reading all of the mail & feel like I have learned so much. > > > >How do they decide how much Actigall you should be on? I am on 900mg a day > >to be taken at bed time with food. > > > >I have had a colonoscopy to verify the UC. The test it self was not bad, > >but > >I threw up for hours after the test. No one could ever tell me why. > > > >Now the ERCP I did not like at all. I woke up during the test and that was > >not a pleasant experience. I also had to stay the night. I think the next > >time will not be so bad because I will know more what to expect. How often > >do you have to have that test? I told my Dr. I never wanted to do that > >again > > & he just laughed. > > > >Has anyone been told they just have a " mild " case? I thought it was > >described as stages. I'm not sure my Dr. knows too much about the disease. > >He is a GI and also seem to concentrate on my UC. > > > >I noticed some of you are on disability-is that SS? I went on it June of > >this year. I have been sick since " 96 with RA, UC & PSC. But I feel so > >guilty being on it. I know I can no longer hold down a full time job, two > >of > >my doctors have told me this but I feel like other people are looking at me > >like it is just a cop out. I still work 8 hours a week, just to keep my > >foot > >in the door. But there are days when I can't even make that. The fatigue > >is > >just awful!! > > > >If any one can share there thoughts with me, I sure would appreciate it. > >Has > >anyone had your Dr. tell you want the transplant rate is? and how long it > >usually is before you need a transplant? > > > >I know how each of you feel and my prayers are with you. > > > >Doris > > > >------------------------------------------------------------------------ > > > >eGroups.com home: /group/ > > - Simplifying group communications > > > > > > > > > > ______________________________________________________ > > ------------------------------------------------------------------------ > > eGroups.com home: /group/ > - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 , I've heard that applying for social security disability can be difficult and often they turn you down the first time. Some advice Jacquelyn gave me was to be real complete when you fill out the forms. We put down all three of Phil's doctors and warned them that it was coming. They need to be real strong in the description of your disease. Phil was accepted right away. He had gone on stated disability right after he got sick because he had been laid off from work the month before (nothing to do with his illness they just shut the plant down). He was looking for work when he got sick. Being 56 years old and with 4 cholangitis attacks in 4 months and having his gallbladder out he got sick real fast and has suffered the fatigue ever since. Hopefully, like him, you will feel better once you have to opportunity to rest when needed. Phil is doing a lot of volunteer work and is even trying to start a business but everything is done around his energy level. It's hard to live on my salary and his ss income but it's worth having him feel better. And if you happen to get turned down at first like some of the people have said just apply again and make your doctors be more aggresive but if they can do that in the first place maybe you'll be lucky and get it right away. Do you have state disability you can go on during the wait. They have a 5 or 6 month waiting time. We collected state until we applied for and received the fed ss and they both pay until the state runs out. Fed SS back pays you if you've been off longer than the wait time. We got about 3 months back pay and that was nice. God luck. Peg wayne bryan wrote: > Hi Doris, > I woke up during my first ERCP while they were dilating my biliary duct. > YUCK! I told the doctor before the next one to be sure I didn't wake up. > Before they started dilating they gave me more medication so I don't > remember a thing. It took a longer to wake up but it was worth it. I am > in the process of applying for SSD. I wasn't happy about it at first. To > look at me I don't look sick which makes it harder for me. I have always > been a hard worker. We have a nice home that we worked hard for. If there > is no other choice what are you going to do. It never has to be forever, > just until you get(we) get back on your feet. > > >From: FirnkesD@... > >Reply-To: egroups > >To: egroups > >Subject: (no subject) > >Date: Sat, 9 Oct 1999 00:11:14 EDT > > > >Hi: > > > >I have enjoyed reading all of the mail & feel like I have learned so much. > > > >How do they decide how much Actigall you should be on? I am on 900mg a day > >to be taken at bed time with food. > > > >I have had a colonoscopy to verify the UC. The test it self was not bad, > >but > >I threw up for hours after the test. No one could ever tell me why. > > > >Now the ERCP I did not like at all. I woke up during the test and that was > >not a pleasant experience. I also had to stay the night. I think the next > >time will not be so bad because I will know more what to expect. How often > >do you have to have that test? I told my Dr. I never wanted to do that > >again > > & he just laughed. > > > >Has anyone been told they just have a " mild " case? I thought it was > >described as stages. I'm not sure my Dr. knows too much about the disease. > >He is a GI and also seem to concentrate on my UC. > > > >I noticed some of you are on disability-is that SS? I went on it June of > >this year. I have been sick since " 96 with RA, UC & PSC. But I feel so > >guilty being on it. I know I can no longer hold down a full time job, two > >of > >my doctors have told me this but I feel like other people are looking at me > >like it is just a cop out. I still work 8 hours a week, just to keep my > >foot > >in the door. But there are days when I can't even make that. The fatigue > >is > >just awful!! > > > >If any one can share there thoughts with me, I sure would appreciate it. > >Has > >anyone had your Dr. tell you want the transplant rate is? and how long it > >usually is before you need a transplant? > > > >I know how each of you feel and my prayers are with you. > > > >Doris > > > >------------------------------------------------------------------------ > > > >eGroups.com home: /group/ > > - Simplifying group communications > > > > > > > > > > ______________________________________________________ > > ------------------------------------------------------------------------ > > eGroups.com home: /group/ > - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 , I've heard that applying for social security disability can be difficult and often they turn you down the first time. Some advice Jacquelyn gave me was to be real complete when you fill out the forms. We put down all three of Phil's doctors and warned them that it was coming. They need to be real strong in the description of your disease. Phil was accepted right away. He had gone on stated disability right after he got sick because he had been laid off from work the month before (nothing to do with his illness they just shut the plant down). He was looking for work when he got sick. Being 56 years old and with 4 cholangitis attacks in 4 months and having his gallbladder out he got sick real fast and has suffered the fatigue ever since. Hopefully, like him, you will feel better once you have to opportunity to rest when needed. Phil is doing a lot of volunteer work and is even trying to start a business but everything is done around his energy level. It's hard to live on my salary and his ss income but it's worth having him feel better. And if you happen to get turned down at first like some of the people have said just apply again and make your doctors be more aggresive but if they can do that in the first place maybe you'll be lucky and get it right away. Do you have state disability you can go on during the wait. They have a 5 or 6 month waiting time. We collected state until we applied for and received the fed ss and they both pay until the state runs out. Fed SS back pays you if you've been off longer than the wait time. We got about 3 months back pay and that was nice. God luck. Peg wayne bryan wrote: > Hi Doris, > I woke up during my first ERCP while they were dilating my biliary duct. > YUCK! I told the doctor before the next one to be sure I didn't wake up. > Before they started dilating they gave me more medication so I don't > remember a thing. It took a longer to wake up but it was worth it. I am > in the process of applying for SSD. I wasn't happy about it at first. To > look at me I don't look sick which makes it harder for me. I have always > been a hard worker. We have a nice home that we worked hard for. If there > is no other choice what are you going to do. It never has to be forever, > just until you get(we) get back on your feet. > > >From: FirnkesD@... > >Reply-To: egroups > >To: egroups > >Subject: (no subject) > >Date: Sat, 9 Oct 1999 00:11:14 EDT > > > >Hi: > > > >I have enjoyed reading all of the mail & feel like I have learned so much. > > > >How do they decide how much Actigall you should be on? I am on 900mg a day > >to be taken at bed time with food. > > > >I have had a colonoscopy to verify the UC. The test it self was not bad, > >but > >I threw up for hours after the test. No one could ever tell me why. > > > >Now the ERCP I did not like at all. I woke up during the test and that was > >not a pleasant experience. I also had to stay the night. I think the next > >time will not be so bad because I will know more what to expect. How often > >do you have to have that test? I told my Dr. I never wanted to do that > >again > > & he just laughed. > > > >Has anyone been told they just have a " mild " case? I thought it was > >described as stages. I'm not sure my Dr. knows too much about the disease. > >He is a GI and also seem to concentrate on my UC. > > > >I noticed some of you are on disability-is that SS? I went on it June of > >this year. I have been sick since " 96 with RA, UC & PSC. But I feel so > >guilty being on it. I know I can no longer hold down a full time job, two > >of > >my doctors have told me this but I feel like other people are looking at me > >like it is just a cop out. I still work 8 hours a week, just to keep my > >foot > >in the door. But there are days when I can't even make that. The fatigue > >is > >just awful!! > > > >If any one can share there thoughts with me, I sure would appreciate it. > >Has > >anyone had your Dr. tell you want the transplant rate is? and how long it > >usually is before you need a transplant? > > > >I know how each of you feel and my prayers are with you. > > > >Doris > > > >------------------------------------------------------------------------ > > > >eGroups.com home: /group/ > > - Simplifying group communications > > > > > > > > > > ______________________________________________________ > > ------------------------------------------------------------------------ > > eGroups.com home: /group/ > - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 Doris, Don't feel guilty, there are people collecting from the government for far less good reason. Just the fact that you have those feelings shows you are a responsible person. You know I've shared so much of what is going on with Phil and all are good friends have seen him when he was so sick that knowone has ever given us any indication that he shouldn't be on disability. And if anyone were to they either don't understand the situation or they are not good enough friends for us to care. I guess we are so lucky to have such caring doctors, friends (mostly square dancers) and church friends. Course a lot of them are cashing in on Phil's free time and getting him to volunteer work (sometimes I think too much) but he knows that he has to rest when he needs to and everyone understands it and he feels useful doing the work when he can. He may not be as sick as some of you at this point because he hasn't had an infection attack since March 23rd and I attribute that to the fact that he isn't pushing himself beyond his limits, he takes his meds and supplements and watches what he eats. Peg FirnkesD@... wrote: > Hi: > > I have enjoyed reading all of the mail & feel like I have learned so much. > > How do they decide how much Actigall you should be on? I am on 900mg a day > to be taken at bed time with food. > > I have had a colonoscopy to verify the UC. The test it self was not bad, but > I threw up for hours after the test. No one could ever tell me why. > > Now the ERCP I did not like at all. I woke up during the test and that was > not a pleasant experience. I also had to stay the night. I think the next > time will not be so bad because I will know more what to expect. How often > do you have to have that test? I told my Dr. I never wanted to do that again > & he just laughed. > > Has anyone been told they just have a " mild " case? I thought it was > described as stages. I'm not sure my Dr. knows too much about the disease. > He is a GI and also seem to concentrate on my UC. > > I noticed some of you are on disability-is that SS? I went on it June of > this year. I have been sick since " 96 with RA, UC & PSC. But I feel so > guilty being on it. I know I can no longer hold down a full time job, two of > my doctors have told me this but I feel like other people are looking at me > like it is just a cop out. I still work 8 hours a week, just to keep my foot > in the door. But there are days when I can't even make that. The fatigue is > just awful!! > > If any one can share there thoughts with me, I sure would appreciate it. Has > anyone had your Dr. tell you want the transplant rate is? and how long it > usually is before you need a transplant? > > I know how each of you feel and my prayers are with you. > > Doris > > ------------------------------------------------------------------------ > > eGroups.com home: /group/ > - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 Doris, Don't feel guilty, there are people collecting from the government for far less good reason. Just the fact that you have those feelings shows you are a responsible person. You know I've shared so much of what is going on with Phil and all are good friends have seen him when he was so sick that knowone has ever given us any indication that he shouldn't be on disability. And if anyone were to they either don't understand the situation or they are not good enough friends for us to care. I guess we are so lucky to have such caring doctors, friends (mostly square dancers) and church friends. Course a lot of them are cashing in on Phil's free time and getting him to volunteer work (sometimes I think too much) but he knows that he has to rest when he needs to and everyone understands it and he feels useful doing the work when he can. He may not be as sick as some of you at this point because he hasn't had an infection attack since March 23rd and I attribute that to the fact that he isn't pushing himself beyond his limits, he takes his meds and supplements and watches what he eats. Peg FirnkesD@... wrote: > Hi: > > I have enjoyed reading all of the mail & feel like I have learned so much. > > How do they decide how much Actigall you should be on? I am on 900mg a day > to be taken at bed time with food. > > I have had a colonoscopy to verify the UC. The test it self was not bad, but > I threw up for hours after the test. No one could ever tell me why. > > Now the ERCP I did not like at all. I woke up during the test and that was > not a pleasant experience. I also had to stay the night. I think the next > time will not be so bad because I will know more what to expect. How often > do you have to have that test? I told my Dr. I never wanted to do that again > & he just laughed. > > Has anyone been told they just have a " mild " case? I thought it was > described as stages. I'm not sure my Dr. knows too much about the disease. > He is a GI and also seem to concentrate on my UC. > > I noticed some of you are on disability-is that SS? I went on it June of > this year. I have been sick since " 96 with RA, UC & PSC. But I feel so > guilty being on it. I know I can no longer hold down a full time job, two of > my doctors have told me this but I feel like other people are looking at me > like it is just a cop out. I still work 8 hours a week, just to keep my foot > in the door. But there are days when I can't even make that. The fatigue is > just awful!! > > If any one can share there thoughts with me, I sure would appreciate it. Has > anyone had your Dr. tell you want the transplant rate is? and how long it > usually is before you need a transplant? > > I know how each of you feel and my prayers are with you. > > Doris > > ------------------------------------------------------------------------ > > eGroups.com home: /group/ > - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 Doris, Don't feel guilty, there are people collecting from the government for far less good reason. Just the fact that you have those feelings shows you are a responsible person. You know I've shared so much of what is going on with Phil and all are good friends have seen him when he was so sick that knowone has ever given us any indication that he shouldn't be on disability. And if anyone were to they either don't understand the situation or they are not good enough friends for us to care. I guess we are so lucky to have such caring doctors, friends (mostly square dancers) and church friends. Course a lot of them are cashing in on Phil's free time and getting him to volunteer work (sometimes I think too much) but he knows that he has to rest when he needs to and everyone understands it and he feels useful doing the work when he can. He may not be as sick as some of you at this point because he hasn't had an infection attack since March 23rd and I attribute that to the fact that he isn't pushing himself beyond his limits, he takes his meds and supplements and watches what he eats. Peg FirnkesD@... wrote: > Hi: > > I have enjoyed reading all of the mail & feel like I have learned so much. > > How do they decide how much Actigall you should be on? I am on 900mg a day > to be taken at bed time with food. > > I have had a colonoscopy to verify the UC. The test it self was not bad, but > I threw up for hours after the test. No one could ever tell me why. > > Now the ERCP I did not like at all. I woke up during the test and that was > not a pleasant experience. I also had to stay the night. I think the next > time will not be so bad because I will know more what to expect. How often > do you have to have that test? I told my Dr. I never wanted to do that again > & he just laughed. > > Has anyone been told they just have a " mild " case? I thought it was > described as stages. I'm not sure my Dr. knows too much about the disease. > He is a GI and also seem to concentrate on my UC. > > I noticed some of you are on disability-is that SS? I went on it June of > this year. I have been sick since " 96 with RA, UC & PSC. But I feel so > guilty being on it. I know I can no longer hold down a full time job, two of > my doctors have told me this but I feel like other people are looking at me > like it is just a cop out. I still work 8 hours a week, just to keep my foot > in the door. But there are days when I can't even make that. The fatigue is > just awful!! > > If any one can share there thoughts with me, I sure would appreciate it. Has > anyone had your Dr. tell you want the transplant rate is? and how long it > usually is before you need a transplant? > > I know how each of you feel and my prayers are with you. > > Doris > > ------------------------------------------------------------------------ > > eGroups.com home: /group/ > - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 Doris, You may have vomited due to the meds they used to put you out. Sometimes it can cause a reaction. That is why they usually give you something to drink before you leave... to make sure you can hold it down. When I was 13, I had the scope put down my throat to look at my stomache (I was then diagnosed with a hiatel hernia, and reflux). I woke up during that test. In April of 97 I had an ERCP done, and I woke up during it. (Even after I had warned the Dr. of waking up in the past). My O2 level dropped pretty low, and I remember hearing my Dr. scream for a nasal canula. When I had the ERCP done last month, they put oxygen on me before the Dr. even started, and I guess I started to wake up, but I was given meds right away... I don't remember any of it. (Which is VERY good). My Dr. hasn't told me that I have a " mild " case, but he did say that I'm in the early stages. When I was having a problem with chronic infections... my Dr. said that I could go into liver failure quickly if we didn't get them to stop. At my last appt. though, he was very hopeful about the future. My liver enzymes are looking pretty good, and he said that it could be YEARS before transplant time... and by then they may have found a cure without having to have a transplant. By the way, my Dr. is a GI, with a specialty in liver disease. Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 Doris, You may have vomited due to the meds they used to put you out. Sometimes it can cause a reaction. That is why they usually give you something to drink before you leave... to make sure you can hold it down. When I was 13, I had the scope put down my throat to look at my stomache (I was then diagnosed with a hiatel hernia, and reflux). I woke up during that test. In April of 97 I had an ERCP done, and I woke up during it. (Even after I had warned the Dr. of waking up in the past). My O2 level dropped pretty low, and I remember hearing my Dr. scream for a nasal canula. When I had the ERCP done last month, they put oxygen on me before the Dr. even started, and I guess I started to wake up, but I was given meds right away... I don't remember any of it. (Which is VERY good). My Dr. hasn't told me that I have a " mild " case, but he did say that I'm in the early stages. When I was having a problem with chronic infections... my Dr. said that I could go into liver failure quickly if we didn't get them to stop. At my last appt. though, he was very hopeful about the future. My liver enzymes are looking pretty good, and he said that it could be YEARS before transplant time... and by then they may have found a cure without having to have a transplant. By the way, my Dr. is a GI, with a specialty in liver disease. Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2007 Report Share Posted April 1, 2007 One good thing is that I do have a room at my sister's in-law's place. But I do come back home for food and also, I realize out of a sense of guilt. I already moved out once but that failed--I do see a Psychotherapist--she has helped me and the books I have on BP have helped me a lot, too, but I feel as if there is no escape, in a sense, especially since most of my family has the disorder. I can't just forget them or move out completely...My mother, who I think has it worst out of everyone, makes me feel that if I do move out, she would 'get me back' (which is probably just her fear of abandonement speaking) and 'abandon' me, i.e., through lack of financial support, etc. On one hand, I feel that once I graduate from school I can support myself, but on the other hand, I feel as if I need her, I think this is something she has instilled in me rather than it being the reality of the circumstance. ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2007 Report Share Posted April 1, 2007 One good thing is that I do have a room at my sister's in-law's place. But I do come back home for food and also, I realize out of a sense of guilt. I already moved out once but that failed--I do see a Psychotherapist--she has helped me and the books I have on BP have helped me a lot, too, but I feel as if there is no escape, in a sense, especially since most of my family has the disorder. I can't just forget them or move out completely...My mother, who I think has it worst out of everyone, makes me feel that if I do move out, she would 'get me back' (which is probably just her fear of abandonement speaking) and 'abandon' me, i.e., through lack of financial support, etc. On one hand, I feel that once I graduate from school I can support myself, but on the other hand, I feel as if I need her, I think this is something she has instilled in me rather than it being the reality of the circumstance. ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2007 Report Share Posted April 1, 2007 One good thing is that I do have a room at my sister's in-law's place. But I do come back home for food and also, I realize out of a sense of guilt. I already moved out once but that failed--I do see a Psychotherapist--she has helped me and the books I have on BP have helped me a lot, too, but I feel as if there is no escape, in a sense, especially since most of my family has the disorder. I can't just forget them or move out completely...My mother, who I think has it worst out of everyone, makes me feel that if I do move out, she would 'get me back' (which is probably just her fear of abandonement speaking) and 'abandon' me, i.e., through lack of financial support, etc. On one hand, I feel that once I graduate from school I can support myself, but on the other hand, I feel as if I need her, I think this is something she has instilled in me rather than it being the reality of the circumstance. ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2007 Report Share Posted April 1, 2007 One good thing is that I do have a room at my sister's in-law's place. But I do come back home for food and also, I realize out of a sense of guilt. I already moved out once but that failed--I do see a Psychotherapist--she has helped me and the books I have on BP have helped me a lot, too, but I feel as if there is no escape, in a sense, especially since most of my family has the disorder. I can't just forget them or move out completely...My mother, who I think has it worst out of everyone, makes me feel that if I do move out, she would 'get me back' (which is probably just her fear of abandonement speaking) and 'abandon' me, i.e., through lack of financial support, etc. On one hand, I feel that once I graduate from school I can support myself, but on the other hand, I feel as if I need her, I think this is something she has instilled in me rather than it being the reality of the circumstance. ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2007 Report Share Posted April 1, 2007 One good thing is that I do have a room at my sister's in-law's place. But I do come back home for food and also, I realize out of a sense of guilt. I already moved out once but that failed--I do see a Psychotherapist--she has helped me and the books I have on BP have helped me a lot, too, but I feel as if there is no escape, in a sense, especially since most of my family has the disorder. I can't just forget them or move out completely...My mother, who I think has it worst out of everyone, makes me feel that if I do move out, she would 'get me back' (which is probably just her fear of abandonement speaking) and 'abandon' me, i.e., through lack of financial support, etc. On one hand, I feel that once I graduate from school I can support myself, but on the other hand, I feel as if I need her, I think this is something she has instilled in me rather than it being the reality of the circumstance. ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2007 Report Share Posted April 1, 2007 One good thing is that I do have a room at my sister's in-law's place. But I do come back home for food and also, I realize out of a sense of guilt. I already moved out once but that failed--I do see a Psychotherapist--she has helped me and the books I have on BP have helped me a lot, too, but I feel as if there is no escape, in a sense, especially since most of my family has the disorder. I can't just forget them or move out completely...My mother, who I think has it worst out of everyone, makes me feel that if I do move out, she would 'get me back' (which is probably just her fear of abandonement speaking) and 'abandon' me, i.e., through lack of financial support, etc. On one hand, I feel that once I graduate from school I can support myself, but on the other hand, I feel as if I need her, I think this is something she has instilled in me rather than it being the reality of the circumstance. ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2007 Report Share Posted April 1, 2007 I appreciate your comments and advice. I do plan on moving out; right now I'm a full-time student and have that as my excuse for not wanting to do anything but go to school. I do want to work but I feel overwhelmed with doing school-work and dealing with the emotional issues that results from being part of an environment with several people with BP. I am graduating, officially September 1st, and even though I do want to eagerly attend graduate school for social work, I believe I have to put it off since it just won't work. My college transcript isn't very pretty( I have several W-withdrawal grades from when I was overwhelmed with the verbal abuse and constant noise in my house--I didn't have the alternate place to go to that I have now, which I am grateful for. I do feel as if this is just a temporary fix, in other words, I need my own place, in my opinion). I am still very proud that my GPA is a 3.4 which is due to a lot of hard work, more so than was needed, because of the " negative energy " that was pulling me down; it is as if this environment was set-up for failure or complacency with low achievement. I believe I deserve better than this life. I see people enjoying their lives and successful and I want to be part of that. My dad does hold down two jobs, but my mother is so controlling that she doesn't even let him be independent. He seems just as oppressed as me, but supposedly, he is supposed to be the Man of The House. I see his dependence and helpless attitude and become sad and hopeless. I need help, I do see a Psychologist, but sometimes I believe I need GOD because the ongoing and past issues are horrible. My sister has it a lot worse....I have strived and have some independence, e.g., a bank account, credit cards, and almost a Bachelor's degree with some work experience. She doesn't have much, except for a boyfriend, who has some sort of mood disorder himself--although he is a nice guy. I'm trying hard. I care about my family, even though they have caused many emotional scars. I do feel stronger emotionally from the bad experiences, and my character has developed, but I'm ready for more, I'm ready and desiring more achievement and most of all, peace of mind. ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2007 Report Share Posted April 1, 2007 I appreciate your comments and advice. I do plan on moving out; right now I'm a full-time student and have that as my excuse for not wanting to do anything but go to school. I do want to work but I feel overwhelmed with doing school-work and dealing with the emotional issues that results from being part of an environment with several people with BP. I am graduating, officially September 1st, and even though I do want to eagerly attend graduate school for social work, I believe I have to put it off since it just won't work. My college transcript isn't very pretty( I have several W-withdrawal grades from when I was overwhelmed with the verbal abuse and constant noise in my house--I didn't have the alternate place to go to that I have now, which I am grateful for. I do feel as if this is just a temporary fix, in other words, I need my own place, in my opinion). I am still very proud that my GPA is a 3.4 which is due to a lot of hard work, more so than was needed, because of the " negative energy " that was pulling me down; it is as if this environment was set-up for failure or complacency with low achievement. I believe I deserve better than this life. I see people enjoying their lives and successful and I want to be part of that. My dad does hold down two jobs, but my mother is so controlling that she doesn't even let him be independent. He seems just as oppressed as me, but supposedly, he is supposed to be the Man of The House. I see his dependence and helpless attitude and become sad and hopeless. I need help, I do see a Psychologist, but sometimes I believe I need GOD because the ongoing and past issues are horrible. My sister has it a lot worse....I have strived and have some independence, e.g., a bank account, credit cards, and almost a Bachelor's degree with some work experience. She doesn't have much, except for a boyfriend, who has some sort of mood disorder himself--although he is a nice guy. I'm trying hard. I care about my family, even though they have caused many emotional scars. I do feel stronger emotionally from the bad experiences, and my character has developed, but I'm ready for more, I'm ready and desiring more achievement and most of all, peace of mind. ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2007 Report Share Posted April 1, 2007 I appreciate your comments and advice. I do plan on moving out; right now I'm a full-time student and have that as my excuse for not wanting to do anything but go to school. I do want to work but I feel overwhelmed with doing school-work and dealing with the emotional issues that results from being part of an environment with several people with BP. I am graduating, officially September 1st, and even though I do want to eagerly attend graduate school for social work, I believe I have to put it off since it just won't work. My college transcript isn't very pretty( I have several W-withdrawal grades from when I was overwhelmed with the verbal abuse and constant noise in my house--I didn't have the alternate place to go to that I have now, which I am grateful for. I do feel as if this is just a temporary fix, in other words, I need my own place, in my opinion). I am still very proud that my GPA is a 3.4 which is due to a lot of hard work, more so than was needed, because of the " negative energy " that was pulling me down; it is as if this environment was set-up for failure or complacency with low achievement. I believe I deserve better than this life. I see people enjoying their lives and successful and I want to be part of that. My dad does hold down two jobs, but my mother is so controlling that she doesn't even let him be independent. He seems just as oppressed as me, but supposedly, he is supposed to be the Man of The House. I see his dependence and helpless attitude and become sad and hopeless. I need help, I do see a Psychologist, but sometimes I believe I need GOD because the ongoing and past issues are horrible. My sister has it a lot worse....I have strived and have some independence, e.g., a bank account, credit cards, and almost a Bachelor's degree with some work experience. She doesn't have much, except for a boyfriend, who has some sort of mood disorder himself--although he is a nice guy. I'm trying hard. I care about my family, even though they have caused many emotional scars. I do feel stronger emotionally from the bad experiences, and my character has developed, but I'm ready for more, I'm ready and desiring more achievement and most of all, peace of mind. ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2007 Report Share Posted April 1, 2007 Sylvia Your words are very truthful, and I am happy that someone is validating my experiences. Even my own therapist doesn't validate me much about the impact of this disorder--maybe she doesn't have the experience of how devastating it is as I have. Maybe I should find another therapist. I'm constantly looking for ways to improve my life. I just wish it didn't have to be so hard.... ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2007 Report Share Posted April 1, 2007 Sylvia Your words are very truthful, and I am happy that someone is validating my experiences. Even my own therapist doesn't validate me much about the impact of this disorder--maybe she doesn't have the experience of how devastating it is as I have. Maybe I should find another therapist. I'm constantly looking for ways to improve my life. I just wish it didn't have to be so hard.... ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
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