Guest guest Posted August 22, 2002 Report Share Posted August 22, 2002 In a message dated 8/22/2002 10:17:37 AM Pacific Daylight Time, writes: Message: 7 Date: Thu, 22 Aug 2002 02:27:31 +0100 (BST) From: Jeanette Carpenter <jeanette_cuk@...> Subject: Prednisolone My dear friends, you all mean so much to me and i dpnt think i would be the person that i am now if it were not for the help of you all. You have carried me when i needed it and for that i am gratefull but at the moment i have come to realise that for me this is it. I saw my doctor so that they can take some blood tests but my hands and arms have gone so red and blotchie that then turns into blisters over night this has really put a spanner in the works as they say around Dearest Jeanette, Oh how uncomfortable you must be and so tired from all that has happened just in the five months or so that I've been with the group. Please, please, please take care of yourself and don't mess with those meds without guidance - it's even possible it could make you feel worse (though it probably doesn't feel possible right now!) We all care so much about you! Is there any place else you can go to try and get some relief? Are you on antidepressants like so many of us? Find someone near who you can trust and get the help you need, we need you! With love, Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2002 Report Share Posted August 22, 2002 Thanks for the advice---I'm going to talk with my Doc on this. --- holzboog@... wrote: > In a message dated 8/22/2002 10:17:37 AM Pacific > Daylight Time, > writes: > > > > I'm having alot of problems > > with mood swings/depression. Used to be so active > 3 years ago and now > > I feel like I can't do anything nor do I have to > desire. Also, does > > anyone know of what is best to eat with this > problem.....type of > > Hi! > Mood swings are common. They are a part of > taking prednisone and I also > think from the stress of dealing with a chronice > illness. Have you talked > with your doc about an antidepressant - many of us > use them to help conteract > the prednisone - it doesn't necessarily take much to > settle things to a > reasonable place. > As to energy - loss of energy has been my most > constant problem since I > was diagnosed. In fact even before I was diagnosed > I'd go to my family doc > and complain about being bone weary - he said it was > from teaching first > grade but somehow none of my co-workers seemed to > have quite the same > feeling. Now I have days where all I want to do is > lie on the couch with my > eyes closed. Usually it's after a day of being > " really busy " . " Really busy " > to me is lunch with a friend and my knitting class > Reality changes as you > adjust so that you can move on as best as possible > from where you are at the > moment. > Enjoy the times that are fun and don't worry > about the times you need to > rest - it's all part of the journey. ( I was just > last night giving myself > the same pep talk!) > > Take care! > Amy > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2002 Report Share Posted August 22, 2002 from Jeanette: My question to you all is does any one have any idea what would happen to me if i suddenly stopped taking the prednisolone alltogether. At the moment even with taking prednisolone it isnt doing any good and its such a horrible medicine and from what i gather my liver is getting worse taking the prenisolone so its just making me feel worse. No, no, no -- please don't take that risk. Stopping Prednisone suddenly would be extremely harmful for anyone, but with your particular medical history (strokes), it could be disastrous. I wish you had doctors you could talk with more easily. I have no medical training, but I'm quite sure that just stopping Prednisone while your liver is getting better is NOT the way to go. Isn't there any medical person you can really discuss your situation with, think our your options with? I wish we were closer so we could sit down and talk. You're a brave, tough person; hang in there. Harper CrispyCritter writes: After 2 liver biopsys I was informed I had autoimmune hepatitis. This was June 2000. At the present time I have been tapered down to 15 MG daily of Predisone and also taking 150 MG of Imuran. The Imuran was just raised from 100 MG about 2 months ago. Want to know if this sounds to be normal for my meds. Also want to know if anyone is having problems with their eyes....like having pressure behind them....was told this is from the predisone. CC, everyone is different in the severity of the disease and the reaction to the medication. Also, doctors' idea of the optimum dosage for a given situation varies a great deal. I was diagnosed at the same time as you, roughly, and I'm down from 80 mg Prednisone to 5, and I'm still at 100 mg Imuran. Those are to be my permanent maintenance dosages, unless my blood tests become significantly worse. As for the pressure behind the eyes -- I believe that is a common side-effect from Prednisone. I know I felt it at the higher doses. BE SURE to have serious eye checkups, given by someone who understands that Prednisone can cause glaucoma and cataracts. This is very important. I hope you're talking to your doctor about the possibility of bone loss and taking the appropriate measures to prevent it. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2002 Report Share Posted August 22, 2002 Amy, Your name means " much loved " , and that is the way I feel about you. Thank you for coming along side and breathing hope and joy back to weary hearts. I appreciate so much your posts to others in the group. It is a privilage to have you as a friend. What you said about looking at a new reality is so true, and realizing we just need to take things a day at a time and be thankful for the things we can do. I also have a special place in my heart for teachers, if I were to consider any other career I would have chosen teaching and first and second graders would've been my favorite to teach, they are so sweet and still need a " mama " kind of teacher. I taught that age in Sunday school for years, they are the greatest. Love, Ruth > In a message dated 8/22/2002 10:17:37 AM Pacific Daylight Time, > @y... writes: > > > > I'm having alot of problems > > with mood swings/depression. Used to be so active 3 years ago and now > > I feel like I can't do anything nor do I have to desire. Also, does > > anyone know of what is best to eat with this problem.....type of > > Hi! > Mood swings are common. They are a part of taking prednisone and I also > think from the stress of dealing with a chronice illness. Have you talked > with your doc about an antidepressant - many of us use them to help conteract > the prednisone - it doesn't necessarily take much to settle things to a > reasonable place. > As to energy - loss of energy has been my most constant problem since I > was diagnosed. In fact even before I was diagnosed I'd go to my family doc > and complain about being bone weary - he said it was from teaching first > grade but somehow none of my co-workers seemed to have quite the same > feeling. Now I have days where all I want to do is lie on the couch with my > eyes closed. Usually it's after a day of being " really busy " . " Really busy " > to me is lunch with a friend and my knitting class Reality changes as you > adjust so that you can move on as best as possible from where you are at the > moment. > Enjoy the times that are fun and don't worry about the times you need to > rest - it's all part of the journey. ( I was just last night giving myself > the same pep talk!) > > Take care! > Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2005 Report Share Posted January 29, 2005 Hi Roni, Some things to think about: Begin to start asking your son what HE would like to do. I think what always bothers me most is when folks assume our kids will like or not like a certain job, because of stereotypes. Just because they " can " do something doesn't mean they like doing something. All of us hate doing jobs we don't like. Keep in mind sometimes our kids may like something that We might not.-- He might think working at Safeway is cool. Observe your son and his strengths and and challenges. What is he good at? What does he like? What does he not like? What would work or not work? Then get creative. Sometimes when I look at my dauaghter do something, like insisting something be done in a certain way and think--- well that is a job skill!! Consider doing a person centered plan. Get the folks together that know your son the best and brainstorm. We went through this process this fall-- it was really a positive time. My daughter doesn't like to get dirty--- and loves to dress up and wear fun clothes--- so there are some " messy " jobs that will not do for her. She loves the computer, and can type fairly well. So some of the things we are thinking about for her are working in an office doing data entry and doing general office help (copying, delivering mail, etc) My girlfriend thinks that she should work as an assistant in a spa--- she would love somthing like that :-) (Wouldn't we all!) Many of the folks in our county have gotten some really creative jobs, we have folks with significant disabilities working. My co-worker who son who is pretty much non-verbal and in a power wheelchair, works delivering mail at a hospital. He doesn't read, but he still can do it. His school staff told him he was " unemployable " . He's had his job for 10 years, and loves it. Some have started small businiesses around things their kids enjoy. One young lady sells trinkets Nail polish etc.. in a booth at a local private college. She loves it. One young man with significant disabilities has a paper shredding business. We have a man here who is blind, deaf and has significant developmental disabilities, and significant behaviors, who works at the local Safeway-- for about 12 years-- he LOVES his job. Keep the attitude that your child WILL work, and keep talking about it with your child. There is no reason that just about any person with DS should not work, and there is no need for " sheltered work " . You may have to do some leg-work, but just keep the possibilities open. There are some good " Social Security work incentive " (PASS and ERWE) that allow them to keep their Medicaid benefits, which allow them to work much more. Keep the possibilities open, M. Mom to 20, Holly 16,(DS) and In a message dated 1/29/05 7:10:35 AM, writes: << Message: 6 Date: Fri, 28 Jan 2005 10:09:02 -0800 From: " Roni " <georgenmaggie@...> Subject: Adult work/life One of the things that has bothered me, is our children's limited opportunities in the workplace. It seems like they can either work at Mc's cleaning floors, or in the group work places making products. I did see a young man once, who was working as a bagger at a grocery store. He had a driver's license and his own apartment. Anyway, we were hoping to have some kind of family business, either a plant nursery or country store where could work with us in a meaningful capacity. I'm hoping he will be able to eventually learn how to count out change, etc. He is a real people person, and I think he would be good at serving customers. We wanted to have a little cottage on our property where could live when he was older so he could have a sense of independence. Maybe if we made it a two bedroom he could have a buddy room with him. Tell me about what dreams or aspirations you have for your children. Roni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2005 Report Share Posted January 29, 2005 Hi Roni, Some things to think about: Begin to start asking your son what HE would like to do. I think what always bothers me most is when folks assume our kids will like or not like a certain job, because of stereotypes. Just because they " can " do something doesn't mean they like doing something. All of us hate doing jobs we don't like. Keep in mind sometimes our kids may like something that We might not.-- He might think working at Safeway is cool. Observe your son and his strengths and and challenges. What is he good at? What does he like? What does he not like? What would work or not work? Then get creative. Sometimes when I look at my dauaghter do something, like insisting something be done in a certain way and think--- well that is a job skill!! Consider doing a person centered plan. Get the folks together that know your son the best and brainstorm. We went through this process this fall-- it was really a positive time. My daughter doesn't like to get dirty--- and loves to dress up and wear fun clothes--- so there are some " messy " jobs that will not do for her. She loves the computer, and can type fairly well. So some of the things we are thinking about for her are working in an office doing data entry and doing general office help (copying, delivering mail, etc) My girlfriend thinks that she should work as an assistant in a spa--- she would love somthing like that :-) (Wouldn't we all!) Many of the folks in our county have gotten some really creative jobs, we have folks with significant disabilities working. My co-worker who son who is pretty much non-verbal and in a power wheelchair, works delivering mail at a hospital. He doesn't read, but he still can do it. His school staff told him he was " unemployable " . He's had his job for 10 years, and loves it. Some have started small businiesses around things their kids enjoy. One young lady sells trinkets Nail polish etc.. in a booth at a local private college. She loves it. One young man with significant disabilities has a paper shredding business. We have a man here who is blind, deaf and has significant developmental disabilities, and significant behaviors, who works at the local Safeway-- for about 12 years-- he LOVES his job. Keep the attitude that your child WILL work, and keep talking about it with your child. There is no reason that just about any person with DS should not work, and there is no need for " sheltered work " . You may have to do some leg-work, but just keep the possibilities open. There are some good " Social Security work incentive " (PASS and ERWE) that allow them to keep their Medicaid benefits, which allow them to work much more. Keep the possibilities open, M. Mom to 20, Holly 16,(DS) and In a message dated 1/29/05 7:10:35 AM, writes: << Message: 6 Date: Fri, 28 Jan 2005 10:09:02 -0800 From: " Roni " <georgenmaggie@...> Subject: Adult work/life One of the things that has bothered me, is our children's limited opportunities in the workplace. It seems like they can either work at Mc's cleaning floors, or in the group work places making products. I did see a young man once, who was working as a bagger at a grocery store. He had a driver's license and his own apartment. Anyway, we were hoping to have some kind of family business, either a plant nursery or country store where could work with us in a meaningful capacity. I'm hoping he will be able to eventually learn how to count out change, etc. He is a real people person, and I think he would be good at serving customers. We wanted to have a little cottage on our property where could live when he was older so he could have a sense of independence. Maybe if we made it a two bedroom he could have a buddy room with him. Tell me about what dreams or aspirations you have for your children. Roni Quote Link to comment Share on other sites More sharing options...
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