Guest guest Posted June 1, 1999 Report Share Posted June 1, 1999 Dear Elena, No need to apologize for your negativity. I can relate to you completely on that score. I'm sorry you're feeling that you may not be able to join the police department. I know AIH definitely does not fit in with my goals either. I'm 23 and have also just been diagnosed. I'm very scared. I'm anxious about the work thing, because I just finished school and am now looking for a job. I'm worried that the stress of interviews and starting a job will flare the symptoms. I'm also worried that I'll get a job, and be incapable of doing it. Finally, I have a HUGE school loan to pay back. This is all very discouraging. My field is Gerontology, but I'm worried that once I'm on meds I may be more susceptible to infection. Now look who's being negative!! I think the unknown is the worst part. Will the meds work? What side effects and new challenges will they bring? Can I continue to be as independent as I have been until now? How will this impact on my ability to have children? From what I've been told, this disease is manageable once we're on the meds - for life. No one has told me yet that I won't live as long, or that life with my own liver is temporary. I think that's unique to each person. My family and friends see the meds as the miracle cure - relieve me from all symptoms, WITH NO SIDE EFFECTS. That's pretty ideal. I actually have a friend who has been on pred and other meds since she was 8 with no side effects. She's a tiny little girl as well. Lucky. I think the thing that frightens me most (being so young) is that the longer we're on the meds, the higher the chance of developing serious problems from the meds (ie. osteoporosis, diabetes, cancer). Are you on meds yet Elena? How are you feeling? What does your doctor say about work etc.? I think it's natural to have negative feelings when we're first diagnosed. There are so many different things to adjust to..so many role and identity changes. I think we're entitled... Take care. >From: ELENA PHEASANT <brit71@...> >Reply- onelist > onelist >Subject: Re: [ ] working >Date: Tue, 1 Jun 1999 09:05:02 -0700 (PDT) > >From: ELENA PHEASANT <brit71@...> > > >Hi Jo, > >I didnt know that.......With treatment (pred) our liver will survive >only survive another 15 years, aaaagh! I had so many plans. I wanted to >join the police dept.That was my dream, and now it doesnt look possible >as now not only am healthy enough but also i dont know that they would >hire anyone with a chronic illness. Its heartbreaking for me. Having >goals in ones life, gives you so much drive. Now, i cant have any >goals. Sorry for being negative, I guess when you first get diagnosed >you go throught the negative stage. > >Also, Is there anyone on the list diagnoses with AIH who is close to my >age 27years old.Its just that it doesnt seem to strike people at that >age? > >Take care >Elena >--- Cjgillice@... wrote: > > From: Cjgillice@... > > > > Charlene, > > I have been diagnosed since last december with AIH, > > but my symptoms > > started last year in April. At first I thought that > > I was depressed and just > > couldn't get motivated. I ignored my physical > > symptoms (RUQ pain, pain in > > the liver area with palpation of the abdomen, > > shortness of breath with > > minimal exertion, and extreme fatigue). I didn't go > > to the doctor because I > > didn't have any medical insurance. (I am a nurse and > > should have known > > better). > > I have now got a full-time (with medical insurance) > > job working 12 > > hour shifts at the local hospital, and to tell the > > truth it is sometimes very > > difficult. I work three 12 hour shifts a week and > > then spend the rest of the > > week sleeping, and just generally recouperating from > > the exhaustion. I am > > fortunate that I work in a hospital where I work in > > a team. I am the RN and > > I have an LVN and an aide to help me, so they do a > > lot of the physical > > running around. About half of my time is spent at > > the computer doing my > > " charting " . > > I am scared of getting where I can't drag myself to > > work anymore! I > > also am my only support. I also have three kids > > wanting to go to college. I > > won't be able to help them much with money, but one > > of them plans to live > > with me (she and her husband and baby) while they go > > to school. > > Anyway, I expect to keep working at least another > > 10 years. I just > > don't have a life outside of work. I have only > > enough energy for my job and > > a little left over for my family (thank God they are > > grown up). > > Strangely enough I find that I am mentally, & > > emotionally more at > > peace than I have ever been before in my life. I > > appreciate the little > > things more. I feel joy at the things that I used > > to not see and hear going > > on around me. And working in the hospital I see > > lots of people who are worse > > off than myself! I am always looking for someone > > who has this same > > " disease " but so far have never found anyone (at the > > hospital). > > I have read that with treatment (prednisone) my > > liver should last at > > least another 15 years. Maybe 14 now since one year > > is now gone by! ha ha. > > All in all, Life is good. > > Take care, Jo from N. California > > > > >------------------------------------------------------------------------ > > Looking to expand your world? > > > > ONElist has over 150,000 e-mail communities from > > which to chose! > > >------------------------------------------------------------------------ > > Please support the American Liver Foundation! > > > > 1.) To subscribe send e-mail to > > -subscribeonelist > > 2.) To UNsubscribe send to > > -unsubscribeonelist > > 3.) Digest e-mail format send to > > -digestonelist > > 4.) Normal e-mail format send to > > -normalonelist > > > >=== >Elena Pheasant > >_________________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 1999 Report Share Posted June 1, 1999 Dear Elena, That must be really hard for you, not having any family there to help you cope with this. I appreciate your concern. My heart goes out to you as well. A friend of mine has been involved in the Air Cadets since she was young. I know how disciplined she is, and how dedicated she is to her ambition of joining the police force. I think you're right that the fatigue would be a definite challenge. On the other hand, my internist informed me that once I began taking pred and other meds, I would feel 100% better and have a lot more energy. My friend who has taken pred agrees with this. She is very thankful for the meds. Maybe you'll be lucky like her and feel better with the meds, with only occasional flare-ups. This is what I'm hoping for! I hope you're able to fulfill your dreams... Like you, I worry a lot about the effect the meds will have on my appearance. I hope it's not shallow. Weight gain and hair growth are big changes, especially if you haven't had these problems in the past. My problem has always been not being able to gain weight. My identity is as a thin person. As wrong as it is, society places a lot of emphasis on women's appearances, particularly around our age. I think everyone at any age wants to be attractive. I comfort myself when I think about my friend who has been on pred for years. She didn't gain the weight, or experience any other serious side effects. I don't know if that's rare, but at least it's a chance. She suggests drinking lots of water (to keep you full), and snacking primarily on fruits and veggies. Limit the food high in saturated fats. I'm seeing my doctor mid-June who will be putting me on meds. I'll let you know how it goes. Let me know how everything goes with you. Maybe since there's minimal inflammation, you can go on a relatively low dose of meds. Lower the better right? Take care of yourself.. >From: ELENA PHEASANT <brit71@...> >Reply- onelist > onelist >Subject: Re: [ ] working >Date: Tue, 1 Jun 1999 10:49:57 -0700 (PDT) > >From: ELENA PHEASANT <brit71@...> > >Hello , >We seem to have the same worries and concerns, although I do feel for >you more. As you are younger than I. It must hurt you mentally, after >all that hard work at school, you then get diagnosed with a chronic >disease. Im sorry! I too have a huge loan to payoff and wonder how i >would pay that and also my bills. Its hard as I dont have family here >in us to help me. >Maybe its possible for us both to fulfill our dreams. Wouldnt that be >great? The only thing i would expect getting in the way of joining the >police dept is the fatigue and lack of concentration caused by the meds >(am I right?) >I too worry about the inability of having kids, thats the only other >thing i wanted to do in my life. >Im not on meds yet as my enzymes were only slightly elevated and my >liver showed just mild inflammation. But since then (2 weeks ago) my >sgpt has elevated to 200. So it looks like i may go on meds soon. I >know its silly and slightly shallow, the thing that worries me most >about meds is the change in appearance ie. hair on face, weight gain. >You see, my confidence is based on how i look. if i dont look good i >have no self esteem. >, my thoughts are with you as I know how hard this must be for you >too. Although, its reassuring for me to know theres someone else i can >talk to, who has AIH at such a young age. >Take care >Elena >--- emily simpson <esimpson7@...> wrote: > > From: " emily simpson " <esimpson7@...> > > > > Dear Elena, > > > > No need to apologize for your negativity. I can > > relate to you completely on > > that score. I'm sorry you're feeling that you may > > not be able to join the > > police department. I know AIH definitely does not > > fit in with my goals > > either. I'm 23 and have also just been diagnosed. > > I'm very scared. I'm > > anxious about the work thing, because I just > > finished school and am now > > looking for a job. I'm worried that the stress of > > interviews and starting a > > job will flare the symptoms. I'm also worried that > > I'll get a job, and be > > incapable of doing it. Finally, I have a HUGE > > school loan to pay back. > > This is all very discouraging. My field is > > Gerontology, but I'm worried > > that once I'm on meds I may be more susceptible to > > infection. Now look > > who's being negative!! I think the unknown is the > > worst part. Will the > > meds work? What side effects and new challenges > > will they bring? Can I > > continue to be as independent as I have been until > > now? How will this > > impact on my ability to have children? > > > > From what I've been told, this disease is manageable > > once we're on the meds > > - for life. No one has told me yet that I won't > > live as long, or that life > > with my own liver is temporary. I think that's > > unique to each person. My > > family and friends see the meds as the miracle cure > > - relieve me from all > > symptoms, WITH NO SIDE EFFECTS. That's pretty > > ideal. I actually have a > > friend who has been on pred and other meds since she > > was 8 with no side > > effects. She's a tiny little girl as well. Lucky. > > I think the thing that > > frightens me most (being so young) is that the > > longer we're on the meds, the > > higher the chance of developing serious problems > > from the meds (ie. > > osteoporosis, diabetes, cancer). Are you on meds > > yet Elena? How are you > > feeling? > > What does your doctor say about work etc.? > > > > I think it's natural to have negative feelings when > > we're first diagnosed. > > There are so many different things to adjust to..so > > many role and identity > > changes. I think we're entitled... > > Take care. > > > > > > > > > > >From: ELENA PHEASANT <brit71@...> > > >Reply- onelist > > > onelist > > >Subject: Re: [ ] working > > >Date: Tue, 1 Jun 1999 09:05:02 -0700 (PDT) > > > > > >From: ELENA PHEASANT <brit71@...> > > > > > > > > >Hi Jo, > > > > > >I didnt know that.......With treatment (pred) our > > liver will survive > > >only survive another 15 years, aaaagh! I had so > > many plans. I wanted to > > >join the police dept.That was my dream, and now it > > doesnt look possible > > >as now not only am healthy enough but also i dont > > know that they would > > >hire anyone with a chronic illness. Its > > heartbreaking for me. Having > > >goals in ones life, gives you so much drive. Now, i > > cant have any > > >goals. Sorry for being negative, I guess when you > > first get diagnosed > > >you go throught the negative stage. > > > > > >Also, Is there anyone on the list diagnoses with > > AIH who is close to my > > >age 27years old.Its just that it doesnt seem to > > strike people at that > > >age? > > > > > >Take care > > >Elena > > >--- Cjgillice@... wrote: > > > > From: Cjgillice@... > > > > > > > > Charlene, > > > > I have been diagnosed since last december with > > AIH, > > > > but my symptoms > > > > started last year in April. At first I thought > > that > > > > I was depressed and just > > > > couldn't get motivated. I ignored my physical > > > > symptoms (RUQ pain, pain in > > > > the liver area with palpation of the abdomen, > > > > shortness of breath with > > > > minimal exertion, and extreme fatigue). I > > didn't go > > > > to the doctor because I > > > > didn't have any medical insurance. (I am a nurse > > and > > > > should have known > > > > better). > > > > I have now got a full-time (with medical > > insurance) > > > > job working 12 > > > > hour shifts at the local hospital, and to tell > > the > > > > truth it is sometimes very > > > > difficult. I work three 12 hour shifts a week > > and > > > > then spend the rest of the > > > > week sleeping, and just generally recouperating > > from > > > > the exhaustion. I am > > > > fortunate that I work in a hospital where I work > > in > > > > a team. I am the RN and > > > > I have an LVN and an aide to help me, so they do > > a > > > > lot of the physical > > > > running around. About half of my time is spent > > at > > > > the computer doing my > > > > " charting " . > > > > I am scared of getting where I can't drag > > myself to > > > > work anymore! I > > > > also am my only support. I also have three kids > > > > wanting to go to college. I > > > > won't be able to help them much with money, but > > one > > > > of them plans to live > > > > with me (she and her husband and baby) while > > they go > > > > to school. > > > > Anyway, I expect to keep working at least > > another > > > > 10 years. I just > > > > don't have a life outside of work. I have only > > > > enough energy for my job and > > > > a little left over for my family (thank God they > > are > > > > grown up). > > > > Strangely enough I find that I am mentally, & > > > > emotionally more at > > > > peace than I have ever been before in my life. > > I > > > > appreciate the little > > > > things more. I feel joy at the things that I > > used > > > > to not see and hear going > > > > on around me. And working in the hospital I see > > > > lots of people who are worse > > > > off than myself! I am always looking for > > someone > > > > who has this same > > > > " disease " but so far have never found anyone (at > > the > > > > hospital). > > > > I have read that with treatment (prednisone) my > > > > liver should last at > > > > least another 15 years. Maybe 14 now since one > > year > > > > is now gone by! ha ha. > > > > All in all, Life is good. > > > > Take care, Jo from N. California > > > > > > > > > > > >------------------------------------------------------------------------ > > > > Looking to expand your world? > > > > > > > > ONElist has over 150,000 e-mail communities from > > > > which to chose! > > > > > > > >------------------------------------------------------------------------ > > > > Please support the American Liver Foundation! > > > > > > > > 1.) To subscribe send e-mail to > > > > -subscribeonelist > > > > 2.) To UNsubscribe send to > > > > -unsubscribeonelist > > > > 3.) Digest e-mail format send to > > >=== message truncated === > >=== >Elena Pheasant > >_________________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 1999 Report Share Posted June 1, 1999 Dear Elena, I just read your message about your parents. I worried about the same thing. This is only my opinion, but I think you should tell them. I know my family would be hurt if they found out I kept something like this from them. If you tell them, it's more support for you and for them. They can maybe work with you, and help you learn more about AIH. I know that's how my mom deals with it. Your family will worry, but that's all part of being a family right? Dealing with things together. I think if you don't tell them, it will create added strain on you and possibly your relationship with your parents. You'll have to think up stories why you can't visit when you're tired etc.etc. It's so selfless of you to not want to worry your family, and I admire that. I just think this is so much easier to confront, when you feel that you have others who love you confronting it with you. Remember that your parents have years of experience, and have likely established coping mechanisms to draw upon. You may be surprised by how much they can handle. I wish you well in your decision. I know it's a hard one, but please think of yourself here. You have so many other things to deal with. (I'm sending you a big hug because I think you need one...) >From: ELENA PHEASANT <brit71@...> >Reply- onelist > onelist >Subject: Re: [ ] working >Date: Tue, 1 Jun 1999 11:05:04 -0700 (PDT) > >From: ELENA PHEASANT <brit71@...> > >Luanne, >Gee, that breaks my heart. Hes so young, but yet sounds so strong. The >greatest thing to happen is for your son to be maintained or improved >with meds so maybe he could fulfill his dreams. Or better still, maybe >the future will hold a cure for Autoimmune diseases. I should really >consider myself lucky as I have manage to do alot in my life already. I >wish the same for your son. >Luanne, how are you handling this, it must be heartbreaking and >worrying. The reason I ask, is that I dont want to tell my parents I >have AIH, as i dont want to destroy the rest of their life as they >would be distraught and constantly worrying. If i didnt tell them they >would remain happy thinking i am well. > >Take care >Elena > >--- BBNLU@... wrote: > > From: BBNLU@... > > > > Elena > > Hi...I'm the parent of a 16 yr old with this and > > PSC(primary Sclorsing > > Cholangitis) both just diagnosed in April...Also has > > had for years Crohns > > Disease and Rhuematoid Arthritis....He is a > > sophamore in high school and > > misses alot of school...He's a good student and > > wants to go to college and > > then medical school...I hate to discorage him but > > not sure if his dreams will > > be able to come true. Most parents of teens just > > hope they have a goal for > > the future and don't have to worry whether they can > > physically handle > > this....He would have loved to go into the Air Force > > and be a pilot like my > > dad but he realizes that is inpossible...kind of > > depressing for their dreams > > to be tossed away like this.... > > I hope you find some other dream that is within your > > reach...Tyler is > > determined to go to med school....I wouldn't put it > > past him...He's a real > > fighter... > > Hope your feeling good today... > > Luanne Ty's mom > > > > >------------------------------------------------------------------------ > > Having difficulty getting " in synch " with list > > members? > > > > Try ONElist's Shared Calendar to organize events, > > meetings and more! > > >------------------------------------------------------------------------ > > Please support the American Liver Foundation! > > > > 1.) To subscribe send e-mail to > > -subscribeonelist > > 2.) To UNsubscribe send to > > -unsubscribeonelist > > 3.) Digest e-mail format send to > > -digestonelist > > 4.) Normal e-mail format send to > > -normalonelist > > > >=== >Elena Pheasant > >_________________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 1999 Report Share Posted June 1, 1999 Charlene, I have been diagnosed since last december with AIH, but my symptoms started last year in April. At first I thought that I was depressed and just couldn't get motivated. I ignored my physical symptoms (RUQ pain, pain in the liver area with palpation of the abdomen, shortness of breath with minimal exertion, and extreme fatigue). I didn't go to the doctor because I didn't have any medical insurance. (I am a nurse and should have known better). I have now got a full-time (with medical insurance) job working 12 hour shifts at the local hospital, and to tell the truth it is sometimes very difficult. I work three 12 hour shifts a week and then spend the rest of the week sleeping, and just generally recouperating from the exhaustion. I am fortunate that I work in a hospital where I work in a team. I am the RN and I have an LVN and an aide to help me, so they do a lot of the physical running around. About half of my time is spent at the computer doing my " charting " . I am scared of getting where I can't drag myself to work anymore! I also am my only support. I also have three kids wanting to go to college. I won't be able to help them much with money, but one of them plans to live with me (she and her husband and baby) while they go to school. Anyway, I expect to keep working at least another 10 years. I just don't have a life outside of work. I have only enough energy for my job and a little left over for my family (thank God they are grown up). Strangely enough I find that I am mentally, & emotionally more at peace than I have ever been before in my life. I appreciate the little things more. I feel joy at the things that I used to not see and hear going on around me. And working in the hospital I see lots of people who are worse off than myself! I am always looking for someone who has this same " disease " but so far have never found anyone (at the hospital). I have read that with treatment (prednisone) my liver should last at least another 15 years. Maybe 14 now since one year is now gone by! ha ha. All in all, Life is good. Take care, Jo from N. California Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 1999 Report Share Posted June 1, 1999 Dear Elena: My doctor told me that I would probably require a transplant within 10 years (that was 4 years ago). I think that a lot depends on your own circumstances and how badly damaged your liver is now. There are others in the group who have had the illness for much longer then that and have not required a transplant yet. There is no set time limit. I don't let AIH stop me from making goals. I've reevaluated what is important and my goals are not what they were at one time. My biggest goal is to be here while my daughter is growing up (she's 8 now). Maybe a physically demanding job like police officer is not in the cards for you, but there are a lot of other jobs out there. Once things get more stabilized for you, you'll feel a lot better and be able to have a better sense of what you'll be able to handle. Don't write off all your dreams because of this set back. Kathy (AIH) Seattle area Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 1999 Report Share Posted June 1, 1999 Elena Hi...I'm the parent of a 16 yr old with this and PSC(primary Sclorsing Cholangitis) both just diagnosed in April...Also has had for years Crohns Disease and Rhuematoid Arthritis....He is a sophamore in high school and misses alot of school...He's a good student and wants to go to college and then medical school...I hate to discorage him but not sure if his dreams will be able to come true. Most parents of teens just hope they have a goal for the future and don't have to worry whether they can physically handle this....He would have loved to go into the Air Force and be a pilot like my dad but he realizes that is inpossible...kind of depressing for their dreams to be tossed away like this.... I hope you find some other dream that is within your reach...Tyler is determined to go to med school....I wouldn't put it past him...He's a real fighter... Hope your feeling good today... Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 1999 Report Share Posted June 1, 1999 Dear Charlean, I have been recently or will be diagnosed with AIH. I have been dealing with this for a year. My liver enzymes have been high through the year and I have a positive ana test. I have had a liver biopsy and my liver looks perfect under the scope! Great huh! Well the reason your e-mail has caught my attention is because of your symptoms. I am 30 with three young children and I teach preschool and do full time child care for 9 kids!!! I also teach an early morning aerobics class three times a week. Well I feel a lack of enthusiasm too. I hear so many talk of fatigue and not being able to work and I am wondering if you or anyone else started with minimal symptoms and have gotten worse. I was told by the GI that I would take prednisone for one year and should go into remission for the rest of my life. He made it sound so easy. I would like to know what I am facing so as to prepare if that is possible. This is my first time writing and I am quite nervous. I have a Dr. apt on the 25 of this month and I am sure he will start my treatment. Please any comments or suggestions would be helpful! Sincerely, Lisel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 1999 Report Share Posted June 1, 1999 Elena, Looks like you and I are in the same boat. I am 30 but have or will be diagnosed soon. I would like to know your symptoms and if you have had a biopsy? If yes how does it look. I don't blame you for being scared. I guess we just need to have faith and know that perhaps ( I am new at this) that not everone will have difficulty managing their illness. Take care!! Lisel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 1999 Report Share Posted June 1, 1999 Hi Jo, I didnt know that.......With treatment (pred) our liver will survive only survive another 15 years, aaaagh! I had so many plans. I wanted to join the police dept.That was my dream, and now it doesnt look possible as now not only am healthy enough but also i dont know that they would hire anyone with a chronic illness. Its heartbreaking for me. Having goals in ones life, gives you so much drive. Now, i cant have any goals. Sorry for being negative, I guess when you first get diagnosed you go throught the negative stage. Also, Is there anyone on the list diagnoses with AIH who is close to my age 27years old.Its just that it doesnt seem to strike people at that age? Take care Elena --- Cjgillice@... wrote: > From: Cjgillice@... > > Charlene, > I have been diagnosed since last december with AIH, > but my symptoms > started last year in April. At first I thought that > I was depressed and just > couldn't get motivated. I ignored my physical > symptoms (RUQ pain, pain in > the liver area with palpation of the abdomen, > shortness of breath with > minimal exertion, and extreme fatigue). I didn't go > to the doctor because I > didn't have any medical insurance. (I am a nurse and > should have known > better). > I have now got a full-time (with medical insurance) > job working 12 > hour shifts at the local hospital, and to tell the > truth it is sometimes very > difficult. I work three 12 hour shifts a week and > then spend the rest of the > week sleeping, and just generally recouperating from > the exhaustion. I am > fortunate that I work in a hospital where I work in > a team. I am the RN and > I have an LVN and an aide to help me, so they do a > lot of the physical > running around. About half of my time is spent at > the computer doing my > " charting " . > I am scared of getting where I can't drag myself to > work anymore! I > also am my only support. I also have three kids > wanting to go to college. I > won't be able to help them much with money, but one > of them plans to live > with me (she and her husband and baby) while they go > to school. > Anyway, I expect to keep working at least another > 10 years. I just > don't have a life outside of work. I have only > enough energy for my job and > a little left over for my family (thank God they are > grown up). > Strangely enough I find that I am mentally, & > emotionally more at > peace than I have ever been before in my life. I > appreciate the little > things more. I feel joy at the things that I used > to not see and hear going > on around me. And working in the hospital I see > lots of people who are worse > off than myself! I am always looking for someone > who has this same > " disease " but so far have never found anyone (at the > hospital). > I have read that with treatment (prednisone) my > liver should last at > least another 15 years. Maybe 14 now since one year > is now gone by! ha ha. > All in all, Life is good. > Take care, Jo from N. California > > ------------------------------------------------------------------------ > Looking to expand your world? > > ONElist has over 150,000 e-mail communities from > which to chose! > ------------------------------------------------------------------------ > Please support the American Liver Foundation! > > 1.) To subscribe send e-mail to > -subscribeonelist > 2.) To UNsubscribe send to > -unsubscribeonelist > 3.) Digest e-mail format send to > -digestonelist > 4.) Normal e-mail format send to > -normalonelist > === Elena Pheasant _________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 1999 Report Share Posted June 1, 1999 Hi Debbie, I think I am in shock, but most my husband is in shock. I guess a question I would have for you is how soon did you find your disease? I was blessed to find it very early. Infact my biopsy showed a completely normal liver. I guess I really don't kow what questions to ask. But anything that would prepare me to talk to my Dr. on the 25 of this month would be helpful. I am trying to be stong, but the more I learn the more I realize that I have gotten on a roller coaster ride that will last the rest of my life. Thank you for your reply and willingness to share your experiences with me. I am sure I will become a regular here. I really need the support. I have tried to get into the chat room and haven't had any luck getting in. I guess I will keep trying. Sincerely, Lisel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 1999 Report Share Posted June 1, 1999 Hello , We seem to have the same worries and concerns, although I do feel for you more. As you are younger than I. It must hurt you mentally, after all that hard work at school, you then get diagnosed with a chronic disease. Im sorry! I too have a huge loan to payoff and wonder how i would pay that and also my bills. Its hard as I dont have family here in us to help me. Maybe its possible for us both to fulfill our dreams. Wouldnt that be great? The only thing i would expect getting in the way of joining the police dept is the fatigue and lack of concentration caused by the meds (am I right?) I too worry about the inability of having kids, thats the only other thing i wanted to do in my life. Im not on meds yet as my enzymes were only slightly elevated and my liver showed just mild inflammation. But since then (2 weeks ago) my sgpt has elevated to 200. So it looks like i may go on meds soon. I know its silly and slightly shallow, the thing that worries me most about meds is the change in appearance ie. hair on face, weight gain. You see, my confidence is based on how i look. if i dont look good i have no self esteem. , my thoughts are with you as I know how hard this must be for you too. Although, its reassuring for me to know theres someone else i can talk to, who has AIH at such a young age. Take care Elena --- emily simpson <esimpson7@...> wrote: > From: " emily simpson " <esimpson7@...> > > Dear Elena, > > No need to apologize for your negativity. I can > relate to you completely on > that score. I'm sorry you're feeling that you may > not be able to join the > police department. I know AIH definitely does not > fit in with my goals > either. I'm 23 and have also just been diagnosed. > I'm very scared. I'm > anxious about the work thing, because I just > finished school and am now > looking for a job. I'm worried that the stress of > interviews and starting a > job will flare the symptoms. I'm also worried that > I'll get a job, and be > incapable of doing it. Finally, I have a HUGE > school loan to pay back. > This is all very discouraging. My field is > Gerontology, but I'm worried > that once I'm on meds I may be more susceptible to > infection. Now look > who's being negative!! I think the unknown is the > worst part. Will the > meds work? What side effects and new challenges > will they bring? Can I > continue to be as independent as I have been until > now? How will this > impact on my ability to have children? > > From what I've been told, this disease is manageable > once we're on the meds > - for life. No one has told me yet that I won't > live as long, or that life > with my own liver is temporary. I think that's > unique to each person. My > family and friends see the meds as the miracle cure > - relieve me from all > symptoms, WITH NO SIDE EFFECTS. That's pretty > ideal. I actually have a > friend who has been on pred and other meds since she > was 8 with no side > effects. She's a tiny little girl as well. Lucky. > I think the thing that > frightens me most (being so young) is that the > longer we're on the meds, the > higher the chance of developing serious problems > from the meds (ie. > osteoporosis, diabetes, cancer). Are you on meds > yet Elena? How are you > feeling? > What does your doctor say about work etc.? > > I think it's natural to have negative feelings when > we're first diagnosed. > There are so many different things to adjust to..so > many role and identity > changes. I think we're entitled... > Take care. > > > > > >From: ELENA PHEASANT <brit71@...> > >Reply- onelist > > onelist > >Subject: Re: [ ] working > >Date: Tue, 1 Jun 1999 09:05:02 -0700 (PDT) > > > >From: ELENA PHEASANT <brit71@...> > > > > > >Hi Jo, > > > >I didnt know that.......With treatment (pred) our > liver will survive > >only survive another 15 years, aaaagh! I had so > many plans. I wanted to > >join the police dept.That was my dream, and now it > doesnt look possible > >as now not only am healthy enough but also i dont > know that they would > >hire anyone with a chronic illness. Its > heartbreaking for me. Having > >goals in ones life, gives you so much drive. Now, i > cant have any > >goals. Sorry for being negative, I guess when you > first get diagnosed > >you go throught the negative stage. > > > >Also, Is there anyone on the list diagnoses with > AIH who is close to my > >age 27years old.Its just that it doesnt seem to > strike people at that > >age? > > > >Take care > >Elena > >--- Cjgillice@... wrote: > > > From: Cjgillice@... > > > > > > Charlene, > > > I have been diagnosed since last december with > AIH, > > > but my symptoms > > > started last year in April. At first I thought > that > > > I was depressed and just > > > couldn't get motivated. I ignored my physical > > > symptoms (RUQ pain, pain in > > > the liver area with palpation of the abdomen, > > > shortness of breath with > > > minimal exertion, and extreme fatigue). I > didn't go > > > to the doctor because I > > > didn't have any medical insurance. (I am a nurse > and > > > should have known > > > better). > > > I have now got a full-time (with medical > insurance) > > > job working 12 > > > hour shifts at the local hospital, and to tell > the > > > truth it is sometimes very > > > difficult. I work three 12 hour shifts a week > and > > > then spend the rest of the > > > week sleeping, and just generally recouperating > from > > > the exhaustion. I am > > > fortunate that I work in a hospital where I work > in > > > a team. I am the RN and > > > I have an LVN and an aide to help me, so they do > a > > > lot of the physical > > > running around. About half of my time is spent > at > > > the computer doing my > > > " charting " . > > > I am scared of getting where I can't drag > myself to > > > work anymore! I > > > also am my only support. I also have three kids > > > wanting to go to college. I > > > won't be able to help them much with money, but > one > > > of them plans to live > > > with me (she and her husband and baby) while > they go > > > to school. > > > Anyway, I expect to keep working at least > another > > > 10 years. I just > > > don't have a life outside of work. I have only > > > enough energy for my job and > > > a little left over for my family (thank God they > are > > > grown up). > > > Strangely enough I find that I am mentally, & > > > emotionally more at > > > peace than I have ever been before in my life. > I > > > appreciate the little > > > things more. I feel joy at the things that I > used > > > to not see and hear going > > > on around me. And working in the hospital I see > > > lots of people who are worse > > > off than myself! I am always looking for > someone > > > who has this same > > > " disease " but so far have never found anyone (at > the > > > hospital). > > > I have read that with treatment (prednisone) my > > > liver should last at > > > least another 15 years. Maybe 14 now since one > year > > > is now gone by! ha ha. > > > All in all, Life is good. > > > Take care, Jo from N. California > > > > > > > >------------------------------------------------------------------------ > > > Looking to expand your world? > > > > > > ONElist has over 150,000 e-mail communities from > > > which to chose! > > > > >------------------------------------------------------------------------ > > > Please support the American Liver Foundation! > > > > > > 1.) To subscribe send e-mail to > > > -subscribeonelist > > > 2.) To UNsubscribe send to > > > -unsubscribeonelist > > > 3.) Digest e-mail format send to > === message truncated === === Elena Pheasant _________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 1999 Report Share Posted June 1, 1999 Luanne, Gee, that breaks my heart. Hes so young, but yet sounds so strong. The greatest thing to happen is for your son to be maintained or improved with meds so maybe he could fulfill his dreams. Or better still, maybe the future will hold a cure for Autoimmune diseases. I should really consider myself lucky as I have manage to do alot in my life already. I wish the same for your son. Luanne, how are you handling this, it must be heartbreaking and worrying. The reason I ask, is that I dont want to tell my parents I have AIH, as i dont want to destroy the rest of their life as they would be distraught and constantly worrying. If i didnt tell them they would remain happy thinking i am well. Take care Elena --- BBNLU@... wrote: > From: BBNLU@... > > Elena > Hi...I'm the parent of a 16 yr old with this and > PSC(primary Sclorsing > Cholangitis) both just diagnosed in April...Also has > had for years Crohns > Disease and Rhuematoid Arthritis....He is a > sophamore in high school and > misses alot of school...He's a good student and > wants to go to college and > then medical school...I hate to discorage him but > not sure if his dreams will > be able to come true. Most parents of teens just > hope they have a goal for > the future and don't have to worry whether they can > physically handle > this....He would have loved to go into the Air Force > and be a pilot like my > dad but he realizes that is inpossible...kind of > depressing for their dreams > to be tossed away like this.... > I hope you find some other dream that is within your > reach...Tyler is > determined to go to med school....I wouldn't put it > past him...He's a real > fighter... > Hope your feeling good today... > Luanne Ty's mom > > ------------------------------------------------------------------------ > Having difficulty getting " in synch " with list > members? > > Try ONElist's Shared Calendar to organize events, > meetings and more! > ------------------------------------------------------------------------ > Please support the American Liver Foundation! > > 1.) To subscribe send e-mail to > -subscribeonelist > 2.) To UNsubscribe send to > -unsubscribeonelist > 3.) Digest e-mail format send to > -digestonelist > 4.) Normal e-mail format send to > -normalonelist > === Elena Pheasant _________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 1999 Report Share Posted June 1, 1999 Thank you , My parents live in england and I live in california. There over here in the us visiting me at the moment, that is why i am now battling with the decision. I wish so much to be able to tell my parents, i really need the support. Its just my mother is more of an anxious, worrier than the average mother. I dont know if she could handle it. I really thank you for your advice and hug! Elena (hugs back) --- emily simpson <esimpson7@...> wrote: > From: " emily simpson " <esimpson7@...> > > Dear Elena, > > I just read your message about your parents. I > worried about the same > thing. This is only my opinion, but I think you > should tell them. I know > my family would be hurt if they found out I kept > something like this from > them. If you tell them, it's more support for you > and for them. They can > maybe work with you, and help you learn more about > AIH. I know that's how > my mom deals with it. Your family will worry, but > that's all part of being > a family right? Dealing with things together. I > think if you don't tell > them, it will create added strain on you and > possibly your relationship with > your parents. You'll have to think up stories why > you can't visit when > you're tired etc.etc. It's so selfless of you to > not want to worry your > family, and I admire that. I just think this is so > much easier to confront, > when you feel that you have others who love you > confronting it with you. > Remember that your parents have years of experience, > and have likely > established coping mechanisms to draw upon. You may > be surprised by how > much they can handle. I wish you well in your > decision. I know it's a hard > one, but please think of yourself here. You have so > many other things to > deal with. > (I'm sending you a big hug because I think you need > one...) > > > > >From: ELENA PHEASANT <brit71@...> > >Reply- onelist > > onelist > >Subject: Re: [ ] working > >Date: Tue, 1 Jun 1999 11:05:04 -0700 (PDT) > > > >From: ELENA PHEASANT <brit71@...> > > > >Luanne, > >Gee, that breaks my heart. Hes so young, but yet > sounds so strong. The > >greatest thing to happen is for your son to be > maintained or improved > >with meds so maybe he could fulfill his dreams. Or > better still, maybe > >the future will hold a cure for Autoimmune > diseases. I should really > >consider myself lucky as I have manage to do alot > in my life already. I > >wish the same for your son. > >Luanne, how are you handling this, it must be > heartbreaking and > >worrying. The reason I ask, is that I dont want to > tell my parents I > >have AIH, as i dont want to destroy the rest of > their life as they > >would be distraught and constantly worrying. If i > didnt tell them they > >would remain happy thinking i am well. > > > >Take care > >Elena > > > >--- BBNLU@... wrote: > > > From: BBNLU@... > > > > > > Elena > > > Hi...I'm the parent of a 16 yr old with this and > > > PSC(primary Sclorsing > > > Cholangitis) both just diagnosed in April...Also > has > > > had for years Crohns > > > Disease and Rhuematoid Arthritis....He is a > > > sophamore in high school and > > > misses alot of school...He's a good student and > > > wants to go to college and > > > then medical school...I hate to discorage him > but > > > not sure if his dreams will > > > be able to come true. Most parents of teens > just > > > hope they have a goal for > > > the future and don't have to worry whether they > can > > > physically handle > > > this....He would have loved to go into the Air > Force > > > and be a pilot like my > > > dad but he realizes that is inpossible...kind of > > > depressing for their dreams > > > to be tossed away like this.... > > > I hope you find some other dream that is within > your > > > reach...Tyler is > > > determined to go to med school....I wouldn't put > it > > > past him...He's a real > > > fighter... > > > Hope your feeling good today... > > > Luanne Ty's mom > > > > > > > >------------------------------------------------------------------------ > > > Having difficulty getting " in synch " with list > > > members? > > > > > > Try ONElist's Shared Calendar to organize > events, > > > meetings and more! > > > > >------------------------------------------------------------------------ > > > Please support the American Liver Foundation! > > > > > > 1.) To subscribe send e-mail to > > > -subscribeonelist > > > 2.) To UNsubscribe send to > > > -unsubscribeonelist > > > 3.) Digest e-mail format send to > > > -digestonelist > > > 4.) Normal e-mail format send to > > > -normalonelist > > > > > > >=== > >Elena Pheasant > > > >_________________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 1999 Report Share Posted June 1, 1999 Dear Its reassuring to hear about your friend whos on prednisone. She hasnt gained any weight? Thats great. How long has she been on preds and at what dosage? Its a shame we have to be so concerned about our appearance. Its what we are and inside us that counts. I live in california where everyone has to look good, so its more pressure for me. I was even thinking of moving to a state where they dont put so much emphasis on appearance. Can you believe that?! Take care and keep me updated on your condition. Elena --- emily simpson <esimpson7@...> wrote: > From: " emily simpson " <esimpson7@...> > > Dear Elena, > > That must be really hard for you, not having any > family there to help you > cope with this. I appreciate your concern. My > heart goes out to you as > well. A friend of mine has been involved in the Air > Cadets since she was > young. I know how disciplined she is, and how > dedicated she is to her > ambition of joining the police force. I think > you're right that the fatigue > would be a definite challenge. On the other hand, > my internist informed me > that once I began taking pred and other meds, I > would feel 100% better and > have a lot more energy. My friend who has taken > pred agrees with this. She > is very thankful for the meds. Maybe you'll be > lucky like her and feel > better with the meds, with only occasional > flare-ups. This is what I'm > hoping for! I hope you're able to fulfill your > dreams... > > Like you, I worry a lot about the effect the meds > will have on my > appearance. I hope it's not shallow. Weight gain > and hair growth are big > changes, especially if you haven't had these > problems in the past. My > problem has always been not being able to gain > weight. My identity is as a > thin person. As wrong as it is, society places a > lot of emphasis on women's > appearances, particularly around our age. I think > everyone at any age wants > to be attractive. I comfort myself when I think > about my friend who has > been on pred for years. She didn't gain the weight, > or experience any other > serious side effects. I don't know if that's rare, > but at least it's a > chance. She suggests drinking lots of water (to > keep you full), and > snacking primarily on fruits and veggies. Limit the > food high in saturated > fats. I'm seeing my doctor mid-June who will be > putting me on meds. I'll > let you know how it goes. > > Let me know how everything goes with you. Maybe > since there's minimal > inflammation, you can go on a relatively low dose of > meds. Lower the better > right? Take care of yourself.. > > > > >From: ELENA PHEASANT <brit71@...> > >Reply- onelist > > onelist > >Subject: Re: [ ] working > >Date: Tue, 1 Jun 1999 10:49:57 -0700 (PDT) > > > >From: ELENA PHEASANT <brit71@...> > > > >Hello , > >We seem to have the same worries and concerns, > although I do feel for > >you more. As you are younger than I. It must hurt > you mentally, after > >all that hard work at school, you then get > diagnosed with a chronic > >disease. Im sorry! I too have a huge loan to payoff > and wonder how i > >would pay that and also my bills. Its hard as I > dont have family here > >in us to help me. > >Maybe its possible for us both to fulfill our > dreams. Wouldnt that be > >great? The only thing i would expect getting in the > way of joining the > >police dept is the fatigue and lack of > concentration caused by the meds > >(am I right?) > >I too worry about the inability of having kids, > thats the only other > >thing i wanted to do in my life. > >Im not on meds yet as my enzymes were only slightly > elevated and my > >liver showed just mild inflammation. But since then > (2 weeks ago) my > >sgpt has elevated to 200. So it looks like i may go > on meds soon. I > >know its silly and slightly shallow, the thing that > worries me most > >about meds is the change in appearance ie. hair on > face, weight gain. > >You see, my confidence is based on how i look. if i > dont look good i > >have no self esteem. > >, my thoughts are with you as I know how hard > this must be for you > >too. Although, its reassuring for me to know theres > someone else i can > >talk to, who has AIH at such a young age. > >Take care > >Elena > >--- emily simpson <esimpson7@...> wrote: > > > From: " emily simpson " <esimpson7@...> > > > > > > Dear Elena, > > > > > > No need to apologize for your negativity. I can > > > relate to you completely on > > > that score. I'm sorry you're feeling that you > may > > > not be able to join the > > > police department. I know AIH definitely does > not > > > fit in with my goals > > > either. I'm 23 and have also just been > diagnosed. > > > I'm very scared. I'm > > > anxious about the work thing, because I just > > > finished school and am now > > > looking for a job. I'm worried that the stress > of > > > interviews and starting a > > > job will flare the symptoms. I'm also worried > that > > > I'll get a job, and be > > > incapable of doing it. Finally, I have a HUGE > > > school loan to pay back. > > > This is all very discouraging. My field is > > > Gerontology, but I'm worried > > > that once I'm on meds I may be more susceptible > to > > > infection. Now look > > > who's being negative!! I think the unknown is > the > > > worst part. Will the > > > meds work? What side effects and new challenges > > > will they bring? Can I > > > continue to be as independent as I have been > until > > > now? How will this > > > impact on my ability to have children? > > > > > > From what I've been told, this disease is > manageable > > > once we're on the meds > > > - for life. No one has told me yet that I won't > > > live as long, or that life > > > with my own liver is temporary. I think that's > > > unique to each person. My > > > family and friends see the meds as the miracle > cure > > > - relieve me from all > > > symptoms, WITH NO SIDE EFFECTS. That's pretty > > > ideal. I actually have a > > > friend who has been on pred and other meds since > she > > > was 8 with no side > > > effects. She's a tiny little girl as well. > Lucky. > > > I think the thing that > > > frightens me most (being so young) is that the > > > longer we're on the meds, the > > > higher the chance of developing serious problems > > > from the meds (ie. > > > osteoporosis, diabetes, cancer). Are you on > meds > > > yet Elena? How are you > > > feeling? > > > What does your doctor say about work etc.? > > > > > > I think it's natural to have negative feelings > when > > > we're first diagnosed. > > > There are so many different things to adjust > to..so > > > many role and identity > > > changes. I think we're entitled... > > > Take care. > > > > > > > > > > > > > > > >From: ELENA PHEASANT <brit71@...> > > > >Reply- onelist > > > > onelist > > > >Subject: Re: [ ] working > > > >Date: Tue, 1 Jun 1999 09:05:02 -0700 (PDT) > > > > > > > >From: ELENA PHEASANT <brit71@...> > > > > > > > > > === message truncated === === Elena Pheasant _________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 1999 Report Share Posted June 1, 1999 Elena, I was diagnosed at 27 with AIH. I am now 31. How long ago were you diagnosed? I know how you are feeling. I went through the full range of emotions. I even wondered at one point if it was worth living if I had to give up my quality of life. Would I just become a burden in someone else's life? I still have days when I feel like I am not good for anything, a terrible wife and mother, just because I am not well and don't have the same energy level I would have healthy. It passes. Things do get better, and you learn to adjust somewhat. You change your goals, don't give up on them. There are plenty of worthwhile things in life left for us to do. We are fortunate, because we still have our minds and our hearts. Also, we have all of our parts! We have arms to hug, and legs to walk. There is much we can do successfully. I wouldn't necessarily give up on the police dept. thing. Were you wanting to become a police officer? I will check and see what they look for in their physical. It might not even get into that. Take care, and keep looking forward. You still have a full and worthwhile life ahead of you. Sincerely, Tami (AIH) chollyfam@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 1999 Report Share Posted June 1, 1999 Luane Ty's mom, Please don't discourage him, and don't let anyone else either. It has been proven over and over again that we humans have the ability to overcome any obstacle and achieve the impossible. Your son can achieve his dreams, but he will need to know that you believe in him. It may be tough for him, but that doesn't mean it is impossible. If he wants to change his goals, let him make that choice. I think as a mom, we always hate to see our children suffer. I work with kids and they are incredible beings, capable of so much more than I believe we are as adults. I think this is because of their belief level. We seem to be too " realistic " sometimes and limit ourselves. Kids keep the doors and windows of opportunity open allowing miracles to happen. Didn't mean to pound this point into the ground, but like I said I have worked with a lot of children and have seen some incredible things. I have to tell you that Moms make the biggest difference. They have the ability to show their children how much they believe in them and love them no matter what. It's a special gift. Take care and keep looking up! Sincerely, Tami (AIH) chollyfam@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 1999 Report Share Posted June 2, 1999 Hi Lisel As a fellow AIH member, having been diagnosed in 1985, how could your GI possibly think that you would be in total remission for the rest of your life after one year of treatment on prednisone? AIH is not a cureable disease but it can be controlled with proper medication. I would be glad to answer any questions you may have. I have steadily worsened over the years to the point of cirrohsis. Debbie AIH Michigan Re: [ ] working >From: <cartersq@...> > >Dear Charlean, > >I have been recently or will be diagnosed with AIH. I have been dealing >with this for a year. My liver enzymes have been high through the year >and I have a positive ana test. I have had a liver biopsy and my liver >looks perfect under the scope! Great huh! > >Well the reason your e-mail has caught my attention is because of your >symptoms. I am 30 with three young children and I teach preschool and >do full time child care for 9 kids!!! I also teach an early morning >aerobics class three times a week. Well I feel a lack of enthusiasm >too. I hear so many talk of fatigue and not being able to work and I am >wondering if you or anyone else started with minimal symptoms and have >gotten worse. I was told by the GI that I would take prednisone for one >year and should go into remission for the rest of my life. He made it >sound so easy. I would like to know what I am facing so as to prepare >if that is possible. > >This is my first time writing and I am quite nervous. I have a Dr. apt >on the 25 of this month and I am sure he will start my treatment. >Please any comments or suggestions would be helpful! > >Sincerely, >Lisel > >------------------------------------------------------------------------ >Have you entered ONElist's " Grow to Give " program? > >Deadline is June 19. Join now to win $5000 for your charity of choice. >------------------------------------------------------------------------ >Please support the American Liver Foundation! > >1.) To subscribe send e-mail to -subscribeonelist >2.) To UNsubscribe send to -unsubscribeonelist >3.) Digest e-mail format send to -digestonelist >4.) Normal e-mail format send to -normalonelist Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 1999 Report Share Posted June 2, 1999 elena, I am 35 but my dr thinks that i have had AIH since i was around 19 years old. I still work and I am a deputy sheriff in tarrant county texas (ft worth). My dr told me to keep working as long as possible and keep a good insurance in case a transplant should ever be needed. Anita Mansfield, Tx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 1999 Report Share Posted June 3, 1999 How you doing people, i've been with aih since i was about 20 or so, they couldn't figure out what it was until the beginning of last year, i'v e had test done before and lots of them, just repetitive with the same negative results for all hep test and auto, and others as well, i still work now as a lifeguard trainer, and was working as a phys ed school teacher, but now that i need my naps more often, i stick with lifeguarding, pays more money c an you believe it. Well i'm doing good now, fishing, working out again, and i do have a good hmo which covers everything, so that is even better. That is very important, wow so many times i'm in and out of the hospital, they would want me to croke already, AAh the weight gain is the same story with just about everyone here, i take lots of naps, more than my cat, she wakes me up to feed her, and a craving for sweets i just can't ignore, i have to sneak it past people who i promise i'll stop. it's difficult. well we all can relate to the same especially those times we want to explode on somebody, and it could be for no particular reason. with this i'm sending a pic of myself with friends fishing, i'm in the middle with shades on smoking a cigar. It would be nice to see the faces we all are talking too. It makes it more personal this way, We post stuff and relate to those experiences, we been through it already or for some we're helping them to go through it. so if u can send a pic, hey even if it's a pic from before the predisone, it doesn't matter. Love to all AIH Brooklyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 1999 Report Share Posted June 3, 1999 Tami, Thanks for writing me...It is hard as a parent but believe me one thing I wouldn't think of is to discourage him....Having dreams is more that 1\2 the fight in getting thru all this...He works at his school work but we are having problem with the teachers cooperating. Making him do all his make up work in the same amount of time as everyone else in the class who may just miss a day here or there...testing him on class room discussions(the kind the kids don't take notes on) when He hasn't been there to be part of the discussion. I've suggested taping the discussions so he could have at least that...But no help so far...He has a new guidance counselor and have just found out that there is a goverment plan for chronically ill or handi-capped kids to be the benefits they need to be able to get thru the school year. I'm going in tommorw to set up the guidelines of what we want out of this program....and then the teachers MUST follow these instructions or they will be disciplined...It will start for next year...His old guidance teacher never mentioned this to us even after he had been on home bound for 7 full months out of his freshman year...always knowing that his is a chronic illness and not something that is a one time thing and then everything is all better. Wish us luck... I hope this finds you feeling well. Nice talking to you...Keep in touch and let me know how you are doing. Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 1999 Report Share Posted June 3, 1999 Hi Anita, Thanks for your reply. Why does your doctor think you have had it since you were 19? I know for a fact that i have had ANA and smooth muscle antibodies for 4 years,but only had elevated enzymes since April this year. (as far as I know)So im wondering if i have had AIH for 4 years or since april this year when my enzymes rose. What do you think? I started taking antidepressent medication in march, so im wondering if the elevated enzymes are associated with the meds im taking. Is it hard working in Law enforcement with AIH? what with all the fatigue etc? Hope you are well Elena --- AGo2864215@... wrote: > From: AGo2864215@... > > elena, > > I am 35 but my dr thinks that i have had AIH since i > was around 19 years old. > I still work and I am a deputy sheriff in tarrant > county texas (ft worth). > My dr told me to keep working as long as possible > and keep a good insurance > in case a transplant should ever be needed. > > Anita > Mansfield, Tx > > ------------------------------------------------------------------------ > Give back to your community through " Grow to Give. " > > Deadline is June 19. See homepage for details. > ------------------------------------------------------------------------ > Please support the American Liver Foundation! > > 1.) To subscribe send e-mail to > -subscribeonelist > 2.) To UNsubscribe send to > -unsubscribeonelist > 3.) Digest e-mail format send to > -digestonelist > 4.) Normal e-mail format send to > -normalonelist > === Elena Pheasant _________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 1999 Report Share Posted June 3, 1999 Elena, I had a really hard time with my first pregnancy, when i was 19. I lost somewhere around 50 pounds while i was pregnant. After I delivered I was only around 100 pounds. I continued to lose weight. Dr's finally started treating me for ulcerative colitis with predisone and some other drug. I never had another problem, got off all medicines, and even had another child in 1985. My dr now seems to think I had AIH that was in remission from 1984-1997. Who knows! My fatigue doesn't hit me until I get home in the evenings. My day starts at 5am and i do fine as long as i stay busy, but as soon as i start to slow down which is around 5pm i get really tired and just lay around on the couch and watch tv, and eventually go to sleep for a couple of hours. My kids think I use them as slaves....because of all the cleaning i require them to do. I don't feel like doing anything when I get home. My Dr told me to go and see a ob-gyn because of the sweats I keep having. He said it is entirely possible that the medicines I am taking may be bringing on early menopause. Have you ever heard of this? Or any one for that matter? My enzymes have been elevated for about the last 8 months with no explanation. This is why I was put back on predisone. Hope you are doing well! Anita Mansfield, Tx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 1999 Report Share Posted June 3, 1999 Tami, Just like me! I am 27 and have just been diagnosed. I was diagnosed around April time. Infact before april my enzymes were normal. So i am very lucky that i caught its early and quickly. I should really appreciate that fact. You did go through the same emotions that i am now going through. Yes, i still dream of joining the police force, and appreciate you looking into that. Thanks. Take care! Elena --- Chollyfam@... wrote: > From: Chollyfam@... > > Elena, > > I was diagnosed at 27 with AIH. I am now 31. How > long ago were you > diagnosed? I know how you are feeling. I went > through the full range of > emotions. I even wondered at one point if it was > worth living if I had to > give up my quality of life. Would I just become a > burden in someone else's > life? I still have days when I feel like I am not > good for anything, a > terrible wife and mother, just because I am not well > and don't have the same > energy level I would have healthy. It passes. > Things do get better, and you > learn to adjust somewhat. You change your goals, > don't give up on them. > There are plenty of worthwhile things in life left > for us to do. We are > fortunate, because we still have our minds and our > hearts. Also, we have all > of our parts! We have arms to hug, and legs to > walk. There is much we can > do successfully. I wouldn't necessarily give up on > the police dept. thing. > Were you wanting to become a police officer? I will > check and see what they > look for in their physical. It might not even get > into that. Take care, and > keep looking forward. You still have a full and > worthwhile life ahead of you. > > Sincerely, > > Tami (AIH) chollyfam@... > > ------------------------------------------------------------------------ > Did you know each week we feature a ONElist story? > > How has ONElist changed your life? Please share > your story. > ------------------------------------------------------------------------ > Please support the American Liver Foundation! > > 1.) To subscribe send e-mail to > -subscribeonelist > 2.) To UNsubscribe send to > -unsubscribeonelist > 3.) Digest e-mail format send to > -digestonelist > 4.) Normal e-mail format send to > -normalonelist > === Elena Pheasant _________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 1999 Report Share Posted June 3, 1999 Hi My symptoms are mild,mainly fatigue and abdominal discomort.About a month ago I had a biopsy which showed mild inflammation. Good luck on your diagnosis and let me know how it goes. Elena --- <cartersq@...> wrote: > From: <cartersq@...> > > Elena, > > Looks like you and I are in the same boat. I am 30 > but have or will be > diagnosed soon. I would like to know your symptoms > and if you have had > a biopsy? If yes how does it look. I don't blame > you for being > scared. I guess we just need to have faith and know > that perhaps ( I am > new at this) that not everone will have difficulty > managing their > illness. > > Take care!! > > Lisel > > ------------------------------------------------------------------------ > Looking to expand your world? > > ONElist has nearly 160,000 e-mail communities from > which to chose! > ------------------------------------------------------------------------ > Please support the American Liver Foundation! > > 1.) To subscribe send e-mail to > -subscribeonelist > 2.) To UNsubscribe send to > -unsubscribeonelist > 3.) Digest e-mail format send to > -digestonelist > 4.) Normal e-mail format send to > -normalonelist > === Elena Pheasant _________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 1999 Report Share Posted June 3, 1999 Anita Sorry to hear you had such a rough time with your first pregnancy, I hope your baby was healthy. I know what you mean about the fatigue, I am going through it right now and its only 1:30. I usually get after eating lunch. I feel so tired i just want to leave work and go to sleep. I havent heard of the that effect with the meds..Maybe someone else has? I just wanted to let everyone know that i will be away from the computer for a week (parents are visiting) so there will be a little delay to reply to posts. I dont want anyone to think im rude or anything!! Take care Elena --- AGo2864215@... wrote: > From: AGo2864215@... > > Elena, > I had a really hard time with my first pregnancy, > when i was 19. I lost > somewhere around 50 pounds while i was pregnant. > After I delivered I was only > around 100 pounds. I continued to lose weight. Dr's > finally started treating > me for ulcerative colitis with predisone and some > other drug. I never had > another problem, got off all medicines, and even > had another child in 1985. > My dr now seems to think I had AIH that was in > remission from 1984-1997. Who > knows! My fatigue doesn't hit me until I get home in > the evenings. My day > starts at 5am and i do fine as long as i stay busy, > but as soon as i start > to slow down which is around 5pm i get really tired > and just lay around on > the couch and watch tv, and eventually go to sleep > for a couple of hours. My > kids think I use them as slaves....because of all > the cleaning i require them > to do. I don't feel like doing anything when I get > home. > > My Dr told me to go and see a ob-gyn because of the > sweats I keep having. He > said it is entirely possible that the medicines I am > taking may be bringing > on early menopause. Have you ever heard of this? Or > any one for that matter? > > > My enzymes have been elevated for about the last 8 > months with no > explanation. This is why I was put back on > predisone. > > Hope you are doing well! > > Anita > Mansfield, Tx > > ------------------------------------------------------------------------ > " Congratulations to 'Voice-Diary,' our latest > ONElist of the Week. > > Visit our homepage and share with us how ONElist is > changing YOUR life! > ------------------------------------------------------------------------ > Please support the American Liver Foundation! > > 1.) To subscribe send e-mail to > -subscribeonelist > 2.) To UNsubscribe send to > -unsubscribeonelist > 3.) Digest e-mail format send to > -digestonelist > 4.) Normal e-mail format send to > -normalonelist > === Elena Pheasant _________________________________________________________ Quote Link to comment Share on other sites More sharing options...
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