Guest guest Posted January 9, 2003 Report Share Posted January 9, 2003 Hi all, newbie here; I have recently sent an email into the group after being a lurker for many, many months. It is a somewhat exposing gesture on my part, mostly because the group has seemed to be so AIH orientated and I worried about my little PBC position here. But now that I have spoke up it indicates to me I have decided to become an active member of the group. A good thing, I think. I personally am glad this little bit of controversy has hit the air waves. It has given me good insite into this group. There are some far out there ones, outspoken ones, threatening ones, to whom I would recommend not leaving a helpful place, and well just all kinds of ones. I like this because I can at times be an outspoken far out there one from time to time, and I think I am going to fit just fine now. ))) I find that in this life I am living, medical appointments that seem to produce nothing, fears of an imminent death (real or not), sore bones and liver, joints that scream at me, and teeth that seem to be loosing their grip on my fillings, and times when tears just will not stop flowing, nothing helps me more than to come to this site and read of others going through the same thing. In my home everyone likes to pretend that all is well. My husband bitches that I dont have a job, though I ask him who will hire an untrained 44 years old that goes to bed for 3 days out of 14, and who never knows when or if she is going outdoors from one day to the next. Here I do not have to pretend that I am just fine because though I am willing to fight the good fight I still need somewhere that it is acknowledged that I am sick and that I am fighting for my life on a daily basis. So for now hi everyone, I am and I live in British Columbia, Canada (abouve Washington State), I am 44 years old, and am a mother and a wife x 20 years. I have had type 1 diabetes for 23 years, have been hypothyroid for 16 years, and can trace my PBC by bloodwork back 9 years. I am sure that fate has more in store for me but I do not mind the wait much, it is the arrival that scares me, and it is a pleasure to meet all of you. Tata for now........ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2003 Report Share Posted January 9, 2003 In the previous digest, one of us (I'm not sure who) said she was disappointed that no one had responded to her questions, that they had "fallen through the cracks." Yes, sometimes they fall through the cracks. Other times, we, or at least I, don't respond because we don't have any answers, physical or emotional. There have been messages about situations so grave and so humbling that I didn't feel qualified to speak to even the purely emotional side of them. In those cases, I've waited to see if someone could come through with the right words -- and usually, someone has. Rarely, if ever, is a question or comment ignored by us out of callousness. Sometimes we just don't know what to say! Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2003 Report Share Posted January 9, 2003 Welcome ! Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2003 Report Share Posted January 9, 2003 Yep you is a sick one alright . you'll do just fine here you ex-lurker you. Welcome! love jerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2003 Report Share Posted January 9, 2003 Hi , It is good to see another Canadian. I am from Waterloo, Ontario I do not know how many Canucks are here but I am sure there are a few. There was a guy from Vancouver b4, about 4 years ago but I can't remember his name, nothing unusual with me, and there was a woman from the rock, New Foundland, but I have not seen her here either. Glad you are here, this is a great group, they are all very caring, understanding and will try to help in any way they can. (You probably already know all this) AIH, 96 From: karen smith liver problems Sent: Thursday, January 09, 2003 11:05 AM Subject: Re: [ ] Digest Number 2710 Hi all, newbie here;I have recently sent an email into the group after being a lurkerfor many, many months. It is a somewhat exposing gesture on my part, mostly because the group has seemed to be so AIH orientatedand I worried about my little PBC position here. But now that Ihave spoke up it indicates to me I have decided to become an activemember of the group. A good thing, I think.I personally am glad this little bit of controversy has hit the airwaves. It has given me good insite into this group. There are somefar out there ones, outspoken ones, threatening ones, to whom I wouldrecommend not leaving a helpful place, and well just all kinds of ones.I like this because I can at times be an outspoken far out there onefrom time to time, and I think I am going to fit just fine now. )))I find that in this life I am living, medical appointments that seemto produce nothing, fears of an imminent death (real or not), sorebones and liver, joints that scream at me, and teeth that seem to beloosing their grip on my fillings, and times when tears just will notstop flowing, nothing helps me more than to come to this site and readof others going through the same thing. In my home everyone likes topretend that all is well. My husband bitches that I dont have a job,though I ask him who will hire an untrained 44 years old that goes tobed for 3 days out of 14, and who never knows when or if she is goingoutdoors from one day to the next. Here I do not have to pretend thatI am just fine because though I am willing to fight the good fight I still need somewhere that it is acknowledged that I am sick and that Iam fighting for my life on a daily basis.So for now hi everyone, I am and I live in British Columbia, Canada (abouve Washington State), I am 44 years old, and am a motherand a wife x 20 years. I have had type 1 diabetes for 23 years, havebeen hypothyroid for 16 years, and can trace my PBC by bloodwork back9 years. I am sure that fate has more in store for me but I do notmind the wait much, it is the arrival that scares me, and it is a pleasure to meet all of you.Tata for now........ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2003 Report Share Posted January 10, 2003 Hi you sound just right for this group. love and prayers anita i dont have family support anymore. i did at 1st. but now i think my part time husband is just being a martyr and wants me to shut up about the whole thing. says i am to obsessed. i just hope he never has to go thru anything like this. > > From: karen smith <valantine.smith@...> > Date: Thu 09/Jan/2003 16:05 GMT > liver problems > Subject: Re: [ ] Digest Number 2710 > > Hi all, newbie here; > > I have recently sent an email into the group after being a lurker > for many, many months. It is a somewhat exposing gesture on my > part, mostly because the group has seemed to be so AIH orientated > and I worried about my little PBC position here. But now that I > have spoke up it indicates to me I have decided to become an active > member of the group. A good thing, I think. > > I personally am glad this little bit of controversy has hit the air > waves. It has given me good insite into this group. There are some > far out there ones, outspoken ones, threatening ones, to whom I would > recommend not leaving a helpful place, and well just all kinds of ones. > I like this because I can at times be an outspoken far out there one > from time to time, and I think I am going to fit just fine now. ))) > > I find that in this life I am living, medical appointments that seem > to produce nothing, fears of an imminent death (real or not), sore > bones and liver, joints that scream at me, and teeth that seem to be > loosing their grip on my fillings, and times when tears just will not > stop flowing, nothing helps me more than to come to this site and read > of others going through the same thing. In my home everyone likes to > pretend that all is well. My husband bitches that I dont have a job, > though I ask him who will hire an untrained 44 years old that goes to > bed for 3 days out of 14, and who never knows when or if she is going > outdoors from one day to the next. Here I do not have to pretend that > I am just fine because though I am willing to fight the good fight I > still need somewhere that it is acknowledged that I am sick and that I > am fighting for my life on a daily basis. > > So for now hi everyone, I am and I live in British Columbia, > Canada (abouve Washington State), I am 44 years old, and am a mother > and a wife x 20 years. I have had type 1 diabetes for 23 years, have > been hypothyroid for 16 years, and can trace my PBC by bloodwork back > 9 years. I am sure that fate has more in store for me but I do not > mind the wait much, it is the arrival that scares me, and it is a > pleasure to meet all of you. > > Tata for now........ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2003 Report Share Posted January 11, 2003 Carolyn, I related so much to your email that I thought I would respond. I, too, am 52 years old and my doctor said that essentially my immune system has been trying to kill me for the last 4 years. I have had four different surgeries for autoimmune related disorders, and almost died after one of the surgeries from deep vein thrombosis and pulmonary emboli. Then in May of last year my elevated liver enzymes were discovered when I had emergency gall bladder surgery. This led to a dx of AIH and a possible crossover with AMA negative PBC. I have been weaned from high doses of prednisone to 5 mg and I take 75mg of Imuran once a day and Urso two times daily. I have a high stress job with long hours as the department head of the Payroll Department in a major hospital in our city. I am still working, but it is getting harder and harder. I have responded extremely well to the steroid therapy, but I still experience a relentless fatigue even though my LFT's are within normal range. Also, I have gained so much weight from the prednisone and from fighting nausea with food (that seems to work for me) that I am so uncomfortable at work that I am miserable. It takes all the energy that I can muster to get to work every day. My doctor wants me to exercise, and the VP that I report to at work even suggested that I go to our hospital provided fitness center during work hours when my energy level is higher than in the evenings. I am so mad at myself, and I can't understand why I can't make myself do this. I am just too tired to get motivated. Are you anywhere near south Mississippi? That is where I am from....I was diagnosed by a liver specialist at Ochner's in New Orleans. The PBC group is having a conference in Biloxi, Mississippi in May, and I am planning on going. I am only about an hour from Biloxi. Is anyone else out there planning on going to this? Best wishes to all, Layne -----Original Message-----From: carolyndelplane@... [mailto:carolyndelplane@...]Sent: Saturday, January 11, 2003 1:41 AM Subject: Re: [ ] Digest Number 2710: I too have not posted a lot in the group, but have learned a great deal from others in the group. I am now 52 years old and at the age of 50 was diagnosed with heart disease and had triple by-pass surgery. I recovered from this only to be diagnosed with microscopic colitis, AIH and primary billary cirrosis. My immune system has turned on me. Yesterday I got the results from a CT scan and found out that I have an enlarged valve in the right side of my heart and I am diabetic now too. When all of this started, I was depressed, but as time passed, I found that educating myself made everything easier to deal with. I worked full time as office manager for my doctor for over six years, however quit just a month ago at the advice of my cardiologist and my liver doc. I was working 16 hour days and the stress level was tremendous and both doctors were afraid that I this was going to advance the cirrosis. However, I have already found that even though like you, I too get up in the morning feeling terrible, I am going to have to find something to do. I need a reason to get out of bed every morning. a reason to get dressed, and not lay in bed all day. Like everyone in this group the pain from the sore joints is enough to slow anyone down. My doctor prescribed me Ultram, which is a non-narcotic pain killer. A couple of these and after about two hours, I can begin to function enough to move about. A lot of morning the nausea is overwhelming, but that too can be controlled. If you do not have a doctor that you are happy with, research and find one that you can be happy with. I quite my job and the first two weeks, I would give in to the pain and sickness and just spend the entire day in bed, some days not even getting dressed. This was making me worse and very depressed. I checked around and found a part time job where I do not have to go to work until noon, this giving me time to get myself so I can motivate. You mentioned that you were a 44 year old women with no skills. If you feel you cannot work, look into different types of volunteer work. Hospitals are a good place to start. You need a reason to keep going everyday. Everyone in this group suffer from a lot of pain and many side effects of the medications we are on, however, we cannot forecast how these illnesses are going to affect us in the future, but worrying about it can cause major depression. Take control of your life and do not let the things you cannot control, worry you. None of us know exactly what our future may be, but live for today and not for what may come later in life. Find something to occupy your time and I suspect that the pain and illness will be easier to deal with. I apologize for the length of this email, but read your post and felt that you were someone in need of some emotional help. Please feel free to email me anytime.Carolyn Delplane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2003 Report Share Posted January 11, 2003 Layne, I was pleased to get your response to my e-mail. It is always comforting to know there are other people out there going through the same things we experience and managing to continue with their life. I had to think a long time before I quit my job. I have worked for 30 years and I was afraid that I would do exactly what I did, give in to the illness and lay around all day. I am not disciplined enough to make myself get up and around without a reason. Besides the fact, we are not wealthy and I knew we were really going to miss my income. However, the long hours were taking a toll, as I am sure they are on you. I got to the point to where I looked awful and my hours seemed to get longer. We changed billing systems and that meant 16 hour days. My husband was not happy with me over this, as my cardiologist told him that I had to slow down and of course after that he never let me hear the last of it. However, it did not take me but a month to know I had to have something to make me motivate. I have been very lucky too, as my GI is treating me without using any steriods. I did not want to have to take them, as I had watched my mother slowly die from the effects of the predisone after having a liver transplant. I decided then, if at all possible I would not take predisone. Of course I may have to some day, but I will put it off as long as possible. I also do not have the energy to exercise. To clean my house, it takes me two days to do what I used to do in one. Don't kick yourself for the way you feel. The illnesses are enough to make you feel that way and the medications finish you off. I live in Memphis, TN. My husband and I like to go to Biloxi for long weekends to the casinos. It has been about a year, but we hope to get a trip soon. My GI just prescribed a new medication he things will make the nausea better. Food does not work for me, I have the opposite effect and cannot make myself eat. If the medication works I will let you know what it is. Thanks for your reply. It is good to have a friends out there that knows what we are all going through. Carolyn Delplane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2003 Report Share Posted January 11, 2003 Layne, I was pleased to get your response to my e-mail. It is always comforting to know there are other people out there going through the same things we experience and managing to continue with their life. I had to think a long time before I quit my job. I have worked for 30 years and I was afraid that I would do exactly what I did, give in to the illness and lay around all day. I am not disciplined enough to make myself get up and around without a reason. Besides the fact, we are not wealthy and I knew we were really going to miss my income. However, the long hours were taking a toll, as I am sure they are on you. I got to the point to where I looked awful and my hours seemed to get longer. We changed billing systems and that meant 16 hour days. My husband was not happy with me over this, as my cardiologist told him that I had to slow down and of course after that he never let me hear the last of it. However, it did not take me but a month to know I had to have something to make me motivate. I have been very lucky too, as my GI is treating me without using any steriods. I did not want to have to take them, as I had watched my mother slowly die from the effects of the predisone after having a liver transplant. I decided then, if at all possible I would not take predisone. Of course I may have to some day, but I will put it off as long as possible. I also do not have the energy to exercise. To clean my house, it takes me two days to do what I used to do in one. Don't kick yourself for the way you feel. The illnesses are enough to make you feel that way and the medications finish you off. I live in Memphis, TN. My husband and I like to go to Biloxi for long weekends to the casinos. It has been about a year, but we hope to get a trip soon. My GI just prescribed a new medication he things will make the nausea better. Food does not work for me, I have the opposite effect and cannot make myself eat. If the medication works I will let you know what it is. Thanks for your reply. It is good to have a friends out there that knows what we are all going through. Carolyn Delplane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2003 Report Share Posted January 11, 2003 Layne, please stop being so hard on yourself. its ok for docs to tell you to excercise, suggest that they get the same symptoms as us for a couple of weeks (thy will soon change there minds). i get exhaysted just getting out of bed, and I dont go out to work anymore. To cope with all you have done is amazing. look after yourself and listen to your own body. and stop being angry with yourself, it doesnt help, i know, i am just the same. love anita > > From: " , Layne " <lashley@...> > Date: Sat 11/Jan/2003 14:42 GMT > " ' ' " < > > Subject: RE: [ ] Digest Number 2710 > > Carolyn, > > I related so much to your email that I thought I would respond. I, too, am > 52 years old and my doctor said that essentially my immune system has been > trying to kill me for the last 4 years. I have had four different surgeries > for autoimmune related disorders, and almost died after one of the surgeries > from deep vein thrombosis and pulmonary emboli. Then in May of last year my > elevated liver enzymes were discovered when I had emergency gall bladder > surgery. This led to a dx of AIH and a possible crossover with AMA negative > PBC. I have been weaned from high doses of prednisone to 5 mg and I take > 75mg of Imuran once a day and Urso two times daily. > > I have a high stress job with long hours as the department head of the > Payroll Department in a major hospital in our city. I am still working, but > it is getting harder and harder. I have responded extremely well to the > steroid therapy, but I still experience a relentless fatigue even though my > LFT's are within normal range. Also, I have gained so much weight from the > prednisone and from fighting nausea with food (that seems to work for me) > that I am so uncomfortable at work that I am miserable. > > It takes all the energy that I can muster to get to work every day. My > doctor wants me to exercise, and the VP that I report to at work even > suggested that I go to our hospital provided fitness center during work > hours when my energy level is higher than in the evenings. I am so mad at > myself, and I can't understand why I can't make myself do this. I am just > too tired to get motivated. > > Are you anywhere near south Mississippi? That is where I am from....I was > diagnosed by a liver specialist at Ochner's in New Orleans. The PBC group > is having a conference in Biloxi, Mississippi in May, and I am planning on > going. I am only about an hour from Biloxi. Is anyone else out there > planning on going to this? > > Best wishes to all, > Layne > > > > > > Re: [ ] Digest Number 2710 > > > : > > I too have not posted a lot in the group, but have learned a great > deal from others in the group. I am now 52 years old and at the age of 50 > was diagnosed with heart disease and had triple by-pass surgery. I > recovered from this only to be diagnosed with microscopic colitis, AIH and > primary billary cirrosis. My immune system has turned on me. Yesterday I > got the results from a CT scan and found out that I have an enlarged valve > in the right side of my heart and I am diabetic now too. > > When all of this started, I was depressed, but as time passed, I > found that educating myself made everything easier to deal with. I worked > full time as office manager for my doctor for over six years, however quit > just a month ago at the advice of my cardiologist and my liver doc. I was > working 16 hour days and the stress level was tremendous and both doctors > were afraid that I this was going to advance the cirrosis. > > However, I have already found that even though like you, I too get up in > the morning feeling terrible, I am going to have to find something to do. > I need a reason to get out of bed every morning. a reason to get dressed, > and not lay in bed all day. Like everyone in this group the pain from the > sore joints is enough to slow anyone down. My doctor prescribed me Ultram, > which is a non-narcotic pain killer. A couple of these and after about two > hours, I can begin to function enough to move about. > > A lot of morning the nausea is overwhelming, but that too can be > controlled. If you do not have a doctor that you are happy with, research > and find one that you can be happy with. > > I quite my job and the first two weeks, I would give in to the pain > and sickness and just spend the entire day in bed, some days not even > getting dressed. This was making me worse and very depressed. > > I checked around and found a part time job where I do not have to go > to work until noon, this giving me time to get myself so I can motivate. > You mentioned that you were a 44 year old women with no skills. If you > feel you cannot work, look into different types of volunteer work. > Hospitals are a good place to start. > > You need a reason to keep going everyday. Everyone in this group > suffer from a lot of pain and many side effects of the medications we are > on, however, we cannot forecast how these illnesses are going to affect us > in the future, but worrying about it can cause major depression. Take > control of your life and do not let the things you cannot control, worry > you. None of us know exactly what our future may be, but live for today > and not for what may come later in life. > > Find something to occupy your time and I suspect that the pain and > illness will be easier to deal with. > > I apologize for the length of this email, but read your post and felt > that you were someone in need of some emotional help. Please feel free to > email me anytime. > > Carolyn Delplane > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2003 Report Share Posted January 11, 2003 Thanks Anita. Even though I know that I have so much to be thankful for, sometimes I just need to whine. I am so grateful that this group is here because my friends and family don't have a clue what I mean when I say I am tired! I don't think anyone knows except those of us that have experienced the feeling of "cement in our veins". BTW, I, too, am on so many medications for so many disorders that I feel like I rattle when I walk! I couldn't help but laugh when I read your description of this! Love to all, Layne Re: [ ] Digest Number 2710> > > :> > I too have not posted a lot in the group, but have learned a great> deal from others in the group. I am now 52 years old and at the age of 50> was diagnosed with heart disease and had triple by-pass surgery. I> recovered from this only to be diagnosed with microscopic colitis, AIH and> primary billary cirrosis. My immune system has turned on me. Yesterday I> got the results from a CT scan and found out that I have an enlarged valve> in the right side of my heart and I am diabetic now too.> > When all of this started, I was depressed, but as time passed, I> found that educating myself made everything easier to deal with. I worked> full time as office manager for my doctor for over six years, however quit> just a month ago at the advice of my cardiologist and my liver doc. I was> working 16 hour days and the stress level was tremendous and both doctors> were afraid that I this was going to advance the cirrosis.> > However, I have already found that even though like you, I too get up in> the morning feeling terrible, I am going to have to find something to do.> I need a reason to get out of bed every morning. a reason to get dressed,> and not lay in bed all day. Like everyone in this group the pain from the> sore joints is enough to slow anyone down. My doctor prescribed me Ultram,> which is a non-narcotic pain killer. A couple of these and after about two> hours, I can begin to function enough to move about. > > A lot of morning the nausea is overwhelming, but that too can be> controlled. If you do not have a doctor that you are happy with, research> and find one that you can be happy with.> > I quite my job and the first two weeks, I would give in to the pain> and sickness and just spend the entire day in bed, some days not even> getting dressed. This was making me worse and very depressed.> > I checked around and found a part time job where I do not have to go> to work until noon, this giving me time to get myself so I can motivate.> You mentioned that you were a 44 year old women with no skills. If you> feel you cannot work, look into different types of volunteer work.> Hospitals are a good place to start.> > You need a reason to keep going everyday. Everyone in this group> suffer from a lot of pain and many side effects of the medications we are> on, however, we cannot forecast how these illnesses are going to affect us> in the future, but worrying about it can cause major depression. Take> control of your life and do not let the things you cannot control, worry> you. None of us know exactly what our future may be, but live for today> and not for what may come later in life.> > Find something to occupy your time and I suspect that the pain and> illness will be easier to deal with.> > I apologize for the length of this email, but read your post and felt> that you were someone in need of some emotional help. Please feel free to> email me anytime.> > Carolyn Delplane > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2003 Report Share Posted January 11, 2003 Carolyn, Did your mother have AIH? I am so sorry that you had to go through the loss of your mother to liver disease, just to end up with it yourself! That must be very frightening for you. You will be in my prayers. If you travel from Memphis to Biloxi, you probably go right through my hometown. I live in Hattiesburg, MS. Let me know when you go to Biloxi again and maybe I can meet you and your husband for coffee on your way down. Best wishes, Layne -----Original Message-----From: carolyndelplane@... [mailto:carolyndelplane@...]Sent: Saturday, January 11, 2003 2:36 PM Subject: Re: [ ] Digest Number 2710Layne, I was pleased to get your response to my e-mail. It is always comforting to know there are other people out there going through the same things we experience and managing to continue with their life. I had to think a long time before I quit my job. I have worked for 30 years and I was afraid that I would do exactly what I did, give in to the illness and lay around all day. I am not disciplined enough to make myself get up and around without a reason. Besides the fact, we are not wealthy and I knew we were really going to miss my income. However, the long hours were taking a toll, as I am sure they are on you. I got to the point to where I looked awful and my hours seemed to get longer. We changed billing systems and that meant 16 hour days. My husband was not happy with me over this, as my cardiologist told him that I had to slow down and of course after that he never let me hear the last of it. However, it did not take me but a month to know I had to have something to make me motivate. I have been very lucky too, as my GI is treating me without using any steriods. I did not want to have to take them, as I had watched my mother slowly die from the effects of the predisone after having a liver transplant. I decided then, if at all possible I would not take predisone. Of course I may have to some day, but I will put it off as long as possible. I also do not have the energy to exercise. To clean my house, it takes me two days to do what I used to do in one. Don't kick yourself for the way you feel. The illnesses are enough to make you feel that way and the medications finish you off. I live in Memphis, TN. My husband and I like to go to Biloxi for long weekends to the casinos. It has been about a year, but we hope to get a trip soon. My GI just prescribed a new medication he things will make the nausea better. Food does not work for me, I have the opposite effect and cannot make myself eat. If the medication works I will let you know what it is.Thanks for your reply. It is good to have a friends out there that knows what we are all going through.Carolyn Delplane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2003 Report Share Posted January 11, 2003 Layne, I am 50 and I find I too have a lot in common with you and Carolyn. When you mentioned you have negative AMA PBC, is that the same as Autoimmune Cholangitis? I was diagnosed with AIH and Autoimmune Cholangitis, but I have found very little information on Autoimmune Cholangitis, I know it affects the bile ducts like PBC does, I would appreciate any information you might have. Ruth --- " , Layne " <lashley@...> wrote: > Carolyn, > > I related so much to your email that I thought I > would respond. I, too, am > 52 years old and my doctor said that essentially my > immune system has been > trying to kill me for the last 4 years. I have had > four different surgeries > for autoimmune related disorders, and almost died > after one of the surgeries > from deep vein thrombosis and pulmonary emboli. > Then in May of last year my > elevated liver enzymes were discovered when I had > emergency gall bladder > surgery. This led to a dx of AIH and a possible > crossover with AMA negative > PBC. I have been weaned from high doses of > prednisone to 5 mg and I take > 75mg of Imuran once a day and Urso two times daily. > > > I have a high stress job with long hours as the > department head of the > Payroll Department in a major hospital in our city. > I am still working, but > it is getting harder and harder. I have responded > extremely well to the > steroid therapy, but I still experience a relentless > fatigue even though my > LFT's are within normal range. Also, I have gained > so much weight from the > prednisone and from fighting nausea with food (that > seems to work for me) > that I am so uncomfortable at work that I am > miserable. > > It takes all the energy that I can muster to get to > work every day. My > doctor wants me to exercise, and the VP that I > report to at work even > suggested that I go to our hospital provided fitness > center during work > hours when my energy level is higher than in the > evenings. I am so mad at > myself, and I can't understand why I can't make > myself do this. I am just > too tired to get motivated. > > Are you anywhere near south Mississippi? That is > where I am from....I was > diagnosed by a liver specialist at Ochner's in New > Orleans. The PBC group > is having a conference in Biloxi, Mississippi in > May, and I am planning on > going. I am only about an hour from Biloxi. Is > anyone else out there > planning on going to this? > > Best wishes to all, > Layne > > > > > > Re: [ ] Digest Number 2710 > > > : > > I too have not posted a lot in the group, but > have learned a great > deal from others in the group. I am now 52 years > old and at the age of 50 > was diagnosed with heart disease and had triple > by-pass surgery. I > recovered from this only to be diagnosed with > microscopic colitis, AIH and > primary billary cirrosis. My immune system has > turned on me. Yesterday I > got the results from a CT scan and found out that I > have an enlarged valve > in the right side of my heart and I am diabetic now > too. > > When all of this started, I was depressed, > but as time passed, I > found that educating myself made everything easier > to deal with. I worked > full time as office manager for my doctor for over > six years, however quit > just a month ago at the advice of my cardiologist > and my liver doc. I was > working 16 hour days and the stress level was > tremendous and both doctors > were afraid that I this was going to advance the > cirrosis. > > However, I have already found that even though > like you, I too get up in > the morning feeling terrible, I am going to have to > find something to do. > I need a reason to get out of bed every morning. a > reason to get dressed, > and not lay in bed all day. Like everyone in this > group the pain from the > sore joints is enough to slow anyone down. My > doctor prescribed me Ultram, > which is a non-narcotic pain killer. A couple of > these and after about two > hours, I can begin to function enough to move about. > > > A lot of morning the nausea is overwhelming, > but that too can be > controlled. If you do not have a doctor that you > are happy with, research > and find one that you can be happy with. > > I quite my job and the first two weeks, I > would give in to the pain > and sickness and just spend the entire day in bed, > some days not even > getting dressed. This was making me worse and very > depressed. > > I checked around and found a part time job > where I do not have to go > to work until noon, this giving me time to get > myself so I can motivate. > You mentioned that you were a 44 year old women with > no skills. If you > feel you cannot work, look into different types of > volunteer work. > Hospitals are a good place to start. > > You need a reason to keep going everyday. > Everyone in this group > suffer from a lot of pain and many side effects of > the medications we are > on, however, we cannot forecast how these illnesses > are going to affect us > in the future, but worrying about it can cause major > depression. Take > control of your life and do not let the things you > cannot control, worry > you. None of us know exactly what our future may > be, but live for today > and not for what may come later in life. > > Find something to occupy your time and I > suspect that the pain and > illness will be easier to deal with. > > I apologize for the length of this email, but > read your post and felt > that you were someone in need of some emotional > help. Please feel free to > email me anytime. > > Carolyn Delplane > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2003 Report Share Posted January 11, 2003 Ruth, I wish I could offer some info on Autoimmune Cholangitis, but all this is so new to me that I don't have much to offer. The doctors did mention this disease to me when trying to diagnose which liver disease I had, but I don't remember what they said, and obviously didn't understand what they were saying either. I do remember thinking that it sounded just like PBC without the mitachondrial antibodies, though. Do you take Ursodiol? Maybe Jerry or Harper can shed some light on the subject for both of us. I have read many of your posts, and I have related strongly to most of them. I am not surprised that we are close to the same age. You have been an inspiration for me when I have needed it, and for that I am very grateful. Looking forward to hearing from you again! Layne Re: [ ] Digest Number 2710> > > :> > I too have not posted a lot in the group, but> have learned a great> deal from others in the group. I am now 52 years> old and at the age of 50> was diagnosed with heart disease and had triple> by-pass surgery. I> recovered from this only to be diagnosed with> microscopic colitis, AIH and> primary billary cirrosis. My immune system has> turned on me. Yesterday I> got the results from a CT scan and found out that I> have an enlarged valve> in the right side of my heart and I am diabetic now> too.> > When all of this started, I was depressed,> but as time passed, I> found that educating myself made everything easier> to deal with. I worked> full time as office manager for my doctor for over> six years, however quit> just a month ago at the advice of my cardiologist> and my liver doc. I was> working 16 hour days and the stress level was> tremendous and both doctors> were afraid that I this was going to advance the> cirrosis.> > However, I have already found that even though> like you, I too get up in> the morning feeling terrible, I am going to have to> find something to do.> I need a reason to get out of bed every morning. a> reason to get dressed,> and not lay in bed all day. Like everyone in this> group the pain from the> sore joints is enough to slow anyone down. My> doctor prescribed me Ultram,> which is a non-narcotic pain killer. A couple of> these and after about two> hours, I can begin to function enough to move about.> > > A lot of morning the nausea is overwhelming,> but that too can be> controlled. If you do not have a doctor that you> are happy with, research> and find one that you can be happy with.> > I quite my job and the first two weeks, I> would give in to the pain> and sickness and just spend the entire day in bed,> some days not even> getting dressed. This was making me worse and very> depressed.> > I checked around and found a part time job> where I do not have to go> to work until noon, this giving me time to get> myself so I can motivate.> You mentioned that you were a 44 year old women with> no skills. If you> feel you cannot work, look into different types of> volunteer work.> Hospitals are a good place to start.> > You need a reason to keep going everyday. > Everyone in this group> suffer from a lot of pain and many side effects of> the medications we are> on, however, we cannot forecast how these illnesses> are going to affect us> in the future, but worrying about it can cause major> depression. Take> control of your life and do not let the things you> cannot control, worry> you. None of us know exactly what our future may> be, but live for today> and not for what may come later in life.> > Find something to occupy your time and I> suspect that the pain and> illness will be easier to deal with.> > I apologize for the length of this email, but> read your post and felt> that you were someone in need of some emotional> help. Please feel free to> email me anytime.> > Carolyn Delplane > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2003 Report Share Posted January 11, 2003 sorry, layne, hit the wrong key. if you do want a laugh i can give you one..and its true. my 8 year old, amy, asked me yesterday if i was going to die. i said no, not if i can help it. instead of looking pleased she just looked at me and said, its ok mum if you do die, cos i will go and live with my friend, lauren, her mums my best friend, and her mum will be my mum, and dad can move in aswell, dont know what her husband would make of that one. kids...what would we do without them. anita > > From: " , Layne " <lashley@...> > Date: Sat 11/Jan/2003 17:03 GMT > " ' ' " < > > Subject: RE: RE: [ ] Digest Number 2710 > > Thanks Anita. Even though I know that I have so much to be thankful for, > sometimes I just need to whine. I am so grateful that this group is here > because my friends and family don't have a clue what I mean when I say I am > tired! I don't think anyone knows except those of us that have experienced > the feeling of " cement in our veins " . > > BTW, I, too, am on so many medications for so many disorders that I feel > like I rattle when I walk! I couldn't help but laugh when I read your > description of this! > > Love to all, > Layne > > Re: [ ] Digest Number 2710 > > > > > > : > > > > I too have not posted a lot in the group, but have learned a great > > deal from others in the group. I am now 52 years old and at the age of 50 > > was diagnosed with heart disease and had triple by-pass surgery. I > > recovered from this only to be diagnosed with microscopic colitis, AIH and > > primary billary cirrosis. My immune system has turned on me. Yesterday > I > > got the results from a CT scan and found out that I have an enlarged valve > > in the right side of my heart and I am diabetic now too. > > > > When all of this started, I was depressed, but as time passed, I > > found that educating myself made everything easier to deal with. I > worked > > full time as office manager for my doctor for over six years, however quit > > just a month ago at the advice of my cardiologist and my liver doc. I > was > > working 16 hour days and the stress level was tremendous and both doctors > > were afraid that I this was going to advance the cirrosis. > > > > However, I have already found that even though like you, I too get up > in > > the morning feeling terrible, I am going to have to find something to do. > > I need a reason to get out of bed every morning. a reason to get dressed, > > and not lay in bed all day. Like everyone in this group the pain from the > > sore joints is enough to slow anyone down. My doctor prescribed me > Ultram, > > which is a non-narcotic pain killer. A couple of these and after about > two > > hours, I can begin to function enough to move about. > > > > A lot of morning the nausea is overwhelming, but that too can be > > controlled. If you do not have a doctor that you are happy with, research > > and find one that you can be happy with. > > > > I quite my job and the first two weeks, I would give in to the pain > > and sickness and just spend the entire day in bed, some days not even > > getting dressed. This was making me worse and very depressed. > > > > I checked around and found a part time job where I do not have to > go > > to work until noon, this giving me time to get myself so I can motivate. > > You mentioned that you were a 44 year old women with no skills. If you > > feel you cannot work, look into different types of volunteer work. > > Hospitals are a good place to start. > > > > You need a reason to keep going everyday. Everyone in this group > > suffer from a lot of pain and many side effects of the medications we are > > on, however, we cannot forecast how these illnesses are going to affect us > > in the future, but worrying about it can cause major depression. Take > > control of your life and do not let the things you cannot control, worry > > you. None of us know exactly what our future may be, but live for today > > and not for what may come later in life. > > > > Find something to occupy your time and I suspect that the pain and > > illness will be easier to deal with. > > > > I apologize for the length of this email, but read your post and > felt > > that you were someone in need of some emotional help. Please feel free > to > > email me anytime. > > > > Carolyn Delplane > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2003 Report Share Posted January 11, 2003 Hi Anita, How long have you been on the Imuran?? I just read in Palmers book I just got it ...it is really great just like everyone said) that it usually takes 3 months to start with side effects of Imuran. This scares me because my sons side effects of the Pred. are terrible! No more side effects please. Have you had any problems with Pred.? It is such a tough job to be a mom..hang in there. P.S. so glad you stayed!!!!!!!!! love connie..devins mom Re: [ ] Digest Number 2710 > > > > > > > > > : > > > > > > I too have not posted a lot in the group, but have learned a great > > > deal from others in the group. I am now 52 years old and at the age of 50 > > > was diagnosed with heart disease and had triple by-pass surgery. I > > > recovered from this only to be diagnosed with microscopic colitis, AIH and > > > primary billary cirrosis. My immune system has turned on me. Yesterday > > I > > > got the results from a CT scan and found out that I have an enlarged valve > > > in the right side of my heart and I am diabetic now too. > > > > > > When all of this started, I was depressed, but as time passed, I > > > found that educating myself made everything easier to deal with. I > > worked > > > full time as office manager for my doctor for over six years, however quit > > > just a month ago at the advice of my cardiologist and my liver doc. I > > was > > > working 16 hour days and the stress level was tremendous and both doctors > > > were afraid that I this was going to advance the cirrosis. > > > > > > However, I have already found that even though like you, I too get up > > in > > > the morning feeling terrible, I am going to have to find something to do. > > > I need a reason to get out of bed every morning. a reason to get dressed, > > > and not lay in bed all day. Like everyone in this group the pain from the > > > sore joints is enough to slow anyone down. My doctor prescribed me > > Ultram, > > > which is a non-narcotic pain killer. A couple of these and after about > > two > > > hours, I can begin to function enough to move about. > > > > > > A lot of morning the nausea is overwhelming, but that too can be > > > controlled. If you do not have a doctor that you are happy with, research > > > and find one that you can be happy with. > > > > > > I quite my job and the first two weeks, I would give in to the pain > > > and sickness and just spend the entire day in bed, some days not even > > > getting dressed. This was making me worse and very depressed. > > > > > > I checked around and found a part time job where I do not have to > > go > > > to work until noon, this giving me time to get myself so I can motivate. > > > You mentioned that you were a 44 year old women with no skills. If you > > > feel you cannot work, look into different types of volunteer work. > > > Hospitals are a good place to start. > > > > > > You need a reason to keep going everyday. Everyone in this group > > > suffer from a lot of pain and many side effects of the medications we are > > > on, however, we cannot forecast how these illnesses are going to affect us > > > in the future, but worrying about it can cause major depression. Take > > > control of your life and do not let the things you cannot control, worry > > > you. None of us know exactly what our future may be, but live for today > > > and not for what may come later in life. > > > > > > Find something to occupy your time and I suspect that the pain and > > > illness will be easier to deal with. > > > > > > I apologize for the length of this email, but read your post and > > felt > > > that you were someone in need of some emotional help. Please feel free > > to > > > email me anytime. > > > > > > Carolyn Delplane > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2003 Report Share Posted January 12, 2003 Hi connie, firstly please give devin a hug from me. and thankyou for the reply. the side effects from the pred have calmed right down, i think thats why they waited till i got down to a low dose before putting me on imuran. i started on 150mgs per day last wednesday. i have heard it can take quite a while for the side effects of imuran to kick in, but not with me. i havent had to much pain yet, but the nausea is awful. i couldnt sleep last night, so ended up in bed until lunch time. i just have no regular pattern, difficult when youve got kids. i am going to see my doctor tomorrow and ask for something to help. thats if i can get an appointment this year. i have put 22llbs on since starting on the pred. very fed up. they say to have the imuran with food, but when i do that it comes straight back up. wonderful.amys at ther dads today, thank heavens, i came home to do the ironing but now i am not so sure. might just go back to bed. take care love and hugs anita > > From: " connie schmitt " <coniaimee@...> > Date: Sun 12/Jan/2003 04:05 GMT > < > > Subject: Re: RE: [ ] Digest Number 2710 > > Hi Anita, > How long have you been on the Imuran?? I just read in Palmers book > I just got it ...it is really great just like everyone said) that it > usually takes 3 months to start with side effects of Imuran. This scares me > because my sons side effects of the Pred. are terrible! No more side effects > please. > Have you had any problems with Pred.? > It is such a tough job to be a mom..hang in there. > P.S. so glad you stayed!!!!!!!!! > love > connie..devins mom > Re: [ ] Digest Number 2710 > > > > > > > > > > > > : > > > > > > > > I too have not posted a lot in the group, but have learned a > great > > > > deal from others in the group. I am now 52 years old and at the age > of 50 > > > > was diagnosed with heart disease and had triple by-pass surgery. I > > > > recovered from this only to be diagnosed with microscopic colitis, AIH > and > > > > primary billary cirrosis. My immune system has turned on me. > Yesterday > > > I > > > > got the results from a CT scan and found out that I have an enlarged > valve > > > > in the right side of my heart and I am diabetic now too. > > > > > > > > When all of this started, I was depressed, but as time passed, > I > > > > found that educating myself made everything easier to deal with. I > > > worked > > > > full time as office manager for my doctor for over six years, however > quit > > > > just a month ago at the advice of my cardiologist and my liver doc. > I > > > was > > > > working 16 hour days and the stress level was tremendous and both > doctors > > > > were afraid that I this was going to advance the cirrosis. > > > > > > > > However, I have already found that even though like you, I too get > up > > > in > > > > the morning feeling terrible, I am going to have to find something to > do. > > > > I need a reason to get out of bed every morning. a reason to get > dressed, > > > > and not lay in bed all day. Like everyone in this group the pain from > the > > > > sore joints is enough to slow anyone down. My doctor prescribed me > > > Ultram, > > > > which is a non-narcotic pain killer. A couple of these and after > about > > > two > > > > hours, I can begin to function enough to move about. > > > > > > > > A lot of morning the nausea is overwhelming, but that too can > be > > > > controlled. If you do not have a doctor that you are happy with, > research > > > > and find one that you can be happy with. > > > > > > > > I quite my job and the first two weeks, I would give in to the > pain > > > > and sickness and just spend the entire day in bed, some days not even > > > > getting dressed. This was making me worse and very depressed. > > > > > > > > I checked around and found a part time job where I do not have > to > > > go > > > > to work until noon, this giving me time to get myself so I can > motivate. > > > > You mentioned that you were a 44 year old women with no skills. If > you > > > > feel you cannot work, look into different types of volunteer work. > > > > Hospitals are a good place to start. > > > > > > > > You need a reason to keep going everyday. Everyone in this > group > > > > suffer from a lot of pain and many side effects of the medications we > are > > > > on, however, we cannot forecast how these illnesses are going to > affect us > > > > in the future, but worrying about it can cause major depression. > Take > > > > control of your life and do not let the things you cannot control, > worry > > > > you. None of us know exactly what our future may be, but live for > today > > > > and not for what may come later in life. > > > > > > > > Find something to occupy your time and I suspect that the pain > and > > > > illness will be easier to deal with. > > > > > > > > I apologize for the length of this email, but read your post > and > > > felt > > > > that you were someone in need of some emotional help. Please feel > free > > > to > > > > email me anytime. > > > > > > > > Carolyn Delplane > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2003 Report Share Posted January 12, 2003 Layne: Good to get your e-mail. My mother had a kidney disease, not liver. I inherited the autoimmune disease from her, but she only had mild liver problems and major heart problems. She died 20 years ago, but not from the diseases she had, but from heart failure, due to the fact that the predisone had weakened her heart so much. Of course things have changed a lot and I do not hear much said from the ones in the group that have had liver transplants, so maybe the medication they use now are better. She had to take the predisone to keep the body from rejecting the kidney. She suffered so many side effects from the predisone that I really questioned whether I would ever go through the same thing or not. The heart breaking part was seeing what it did to her mentally. However, like I said this was twenty years ago and she had to take such large doses because predisone was the main drug used then to help the transplant take. I inherited the heart problems and the fact that my body does not get rid of cholestrol. I do not know the lady you mentioned that lives here in Memphis. I will watch for her posts. it amazes me that these liver diseases that we all have are rare, especially the PBC, yest there seems to be so many of us in this group. I will watch for her post and e-mail her. Good to hear from you and keep hanging in there. Wishing you well. Carolyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2006 Report Share Posted April 4, 2006 It is with our deepest regrets, we have found out that Mindy Renouf passed away suddenly over the weekend from a CNS aneurysm. Her husband Jim will catch up on all the e-mails and phone calls he has received as soon as he can (also he really appreciates all the support everyone has shown). He would also appreciate any guidance anyone could offer in helping with his son. We will all miss Mindy very much. Sincerely, Goldberg M.D. and staff. Re: Advice for grandmother who see's " Asperger " but parents don't? Hi My son is 11 and was just diagnosed with Aspergers. He was VERY social from the beginning, but more so with adults in retrospect. He began to have more difficulties with attention and initiating with peers as he got older. He tends to tune in when its something of interest (like history) but tunes out when its not something of high preference. His play has always been strange and he never played with toys like other children. But he has always been extremely bright, extremely talkative, etc...so it took me going back to school for my pysch MA and then going to work for an autism center to truly see that my oldest son has aspergers. He was just Dx last week and we are in the process of getting some evals done to see if we can get him some OT and some ABA to help with focusing and social skills. I will keep you posted on our progress. There are several books to see where your child should be in regards to play development, when I get home I will send you the titles of the ones I have. Here at the Center for Autism and Related Disorders, we are currenly in the process of developing a parent guide to developmental play and a guide to help parents implement intervention. We hope to have it published within the year, although currently it is still a work in progress. Sonya Emerson (pasadena, ca) <thecolemans4@...> wrote: Hi all - I met a lady who works with horseback riding therapy for children with disabilities who stated that she believes her 7 yr old grandson has Asperger, and that she has given information to his parents and urged them to seek assistance for him, but they are " in denial " , stating he is just super smart and is sociable. She observed from infancy that his startle reflexes were too strong (we've most all seen that one, haven't we?) and that if you give him, for instance, a toy car, he will open and close doors repetitively rather than play the way a typical child would. He is also having problems at school with attention. She worries (probably a lot to be in a 'helpless' position) that they are missing an important period that therapy could help, so I wanted to ask for anyone's input on how they would approach such an issue with their children. I did not get any type of medical history on the child, but would trust the grandmother's educated observance, so I plan to give her info and would also include any comments you all may have on the topic if she is interested. I don't think she needs much confirmation that " Asperger " children can still be social. Don't social problems often show up later in age? I think that a child with " Aspergers " who is functioning well enough to escape attention from professionals would probably be detected as they get a bit older. I wonder, though, if there is any good info someone could point me to that refers to the stages of play development, perhaps so that she could show the parents periods that the child may have missed so that the parents could be more aware of those aspects of development, along with sensory dysfunction... couldn't a child get therapy for these issues without any 'formal diagnosis'? (We all know how 'valuable' those are anyway.) Thanks in advance... I think any person interested in and involved with special needs children should have any information at their disposal to help those kids. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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