Guest guest Posted October 4, 1999 Report Share Posted October 4, 1999 Hi! I would like for my husband to be more understanding about my " brain fog " or confusion as you will. He gets very upset with me and snarls at me and says that I just don't pay attention. He is right, I can't pay attention. My attention span is almost down to nil. I have to be in a wheelchair when I go places I would have to walk a lot. Notice that everyone who pushes you want you to go where they want to go -- always!! When he is looking at something and I want to look at something else, I just move my chair to the spot I want to be. This drives him crazy and he starts screaming at me in stores. People just stop and look at him very strangely. When I have to use my upper body to push the chair, I get the horrible URQ pains -- and then sometimes I don't. I was such an independent woman, a woman who could do anything and did so, a woman would be out on the road with our workmen taking a mobile home to set up -- then a few hours later, I would have to go to my garden club meeting as I was president. I belonged to everything. I was very active in the community and loved having a department store which was opened in 1920 by his father and his father's brother! It was the most prestigious department store in a 100-mile radius! That was my life. Well here I am now, begging again. I really need someone in the know to tell me exactly (in baby language) what to do!! My youngest son, who lives in DC and is a photojournalist there will have nothing to do with me. I have finally came to the conclusion that I have to leave him alone with his wonderful wife and maybe someday before the tx he will come and see me. If not, it will make the tx much, much harder. I love all of you! Hugs, Biddy Re: PSC Confirmed > > >JKosiorek@... wrote: > >> I want us (we have a 12 yr old daughter) to keep a positive attitude about >> it, but it's hard. For those of you with PSC, what kind of things would you >> like to hear from your spouse or significant other? > >Well, for me, I want other people to be willing to make allowances for >my disease, and to understand when I can't keep up as well due to >fatigue etc., but I don't want the main thing that they think of about >me to be " he's sick " . I want them to treat me, and think about me as >they did before, except in cases where I specifically need allowances. >Of course so far I have only had low-level symptoms,so things may change >if I get worse... > >athan > >------------------------------------------------------------------------ > >eGroups.com home: /group/ > - Simplifying group communications > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 1999 Report Share Posted October 4, 1999 Hi! I would like for my husband to be more understanding about my " brain fog " or confusion as you will. He gets very upset with me and snarls at me and says that I just don't pay attention. He is right, I can't pay attention. My attention span is almost down to nil. I have to be in a wheelchair when I go places I would have to walk a lot. Notice that everyone who pushes you want you to go where they want to go -- always!! When he is looking at something and I want to look at something else, I just move my chair to the spot I want to be. This drives him crazy and he starts screaming at me in stores. People just stop and look at him very strangely. When I have to use my upper body to push the chair, I get the horrible URQ pains -- and then sometimes I don't. I was such an independent woman, a woman who could do anything and did so, a woman would be out on the road with our workmen taking a mobile home to set up -- then a few hours later, I would have to go to my garden club meeting as I was president. I belonged to everything. I was very active in the community and loved having a department store which was opened in 1920 by his father and his father's brother! It was the most prestigious department store in a 100-mile radius! That was my life. Well here I am now, begging again. I really need someone in the know to tell me exactly (in baby language) what to do!! My youngest son, who lives in DC and is a photojournalist there will have nothing to do with me. I have finally came to the conclusion that I have to leave him alone with his wonderful wife and maybe someday before the tx he will come and see me. If not, it will make the tx much, much harder. I love all of you! Hugs, Biddy Re: PSC Confirmed > > >JKosiorek@... wrote: > >> I want us (we have a 12 yr old daughter) to keep a positive attitude about >> it, but it's hard. For those of you with PSC, what kind of things would you >> like to hear from your spouse or significant other? > >Well, for me, I want other people to be willing to make allowances for >my disease, and to understand when I can't keep up as well due to >fatigue etc., but I don't want the main thing that they think of about >me to be " he's sick " . I want them to treat me, and think about me as >they did before, except in cases where I specifically need allowances. >Of course so far I have only had low-level symptoms,so things may change >if I get worse... > >athan > >------------------------------------------------------------------------ > >eGroups.com home: /group/ > - Simplifying group communications > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 1999 Report Share Posted October 4, 1999 Hi! I would like for my husband to be more understanding about my " brain fog " or confusion as you will. He gets very upset with me and snarls at me and says that I just don't pay attention. He is right, I can't pay attention. My attention span is almost down to nil. I have to be in a wheelchair when I go places I would have to walk a lot. Notice that everyone who pushes you want you to go where they want to go -- always!! When he is looking at something and I want to look at something else, I just move my chair to the spot I want to be. This drives him crazy and he starts screaming at me in stores. People just stop and look at him very strangely. When I have to use my upper body to push the chair, I get the horrible URQ pains -- and then sometimes I don't. I was such an independent woman, a woman who could do anything and did so, a woman would be out on the road with our workmen taking a mobile home to set up -- then a few hours later, I would have to go to my garden club meeting as I was president. I belonged to everything. I was very active in the community and loved having a department store which was opened in 1920 by his father and his father's brother! It was the most prestigious department store in a 100-mile radius! That was my life. Well here I am now, begging again. I really need someone in the know to tell me exactly (in baby language) what to do!! My youngest son, who lives in DC and is a photojournalist there will have nothing to do with me. I have finally came to the conclusion that I have to leave him alone with his wonderful wife and maybe someday before the tx he will come and see me. If not, it will make the tx much, much harder. I love all of you! Hugs, Biddy Re: PSC Confirmed > > >JKosiorek@... wrote: > >> I want us (we have a 12 yr old daughter) to keep a positive attitude about >> it, but it's hard. For those of you with PSC, what kind of things would you >> like to hear from your spouse or significant other? > >Well, for me, I want other people to be willing to make allowances for >my disease, and to understand when I can't keep up as well due to >fatigue etc., but I don't want the main thing that they think of about >me to be " he's sick " . I want them to treat me, and think about me as >they did before, except in cases where I specifically need allowances. >Of course so far I have only had low-level symptoms,so things may change >if I get worse... > >athan > >------------------------------------------------------------------------ > >eGroups.com home: /group/ > - Simplifying group communications > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 1999 Report Share Posted October 5, 1999 Hi Biddy, I am sorry to hear about the problems you are having on the financial end. I wish I knew more so I could help you out, but my knowledge of this subject is close to nothing, as we have had the great luxury of having somewhat decent health insurance with my husband's job (from the city of NY). Maybe someone else in the group has some info for you. I will put my thinking cap on! It is hard enough to be sick without having to worry about money. Just for today, why not try to put it on the back burner and concentrate on feeling the best you can. I'm praying for you. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 1999 Report Share Posted October 5, 1999 Hi Biddy, I am sorry to hear about the problems you are having on the financial end. I wish I knew more so I could help you out, but my knowledge of this subject is close to nothing, as we have had the great luxury of having somewhat decent health insurance with my husband's job (from the city of NY). Maybe someone else in the group has some info for you. I will put my thinking cap on! It is hard enough to be sick without having to worry about money. Just for today, why not try to put it on the back burner and concentrate on feeling the best you can. I'm praying for you. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 1999 Report Share Posted October 5, 1999 Hi Biddy, I am sorry to hear about the problems you are having on the financial end. I wish I knew more so I could help you out, but my knowledge of this subject is close to nothing, as we have had the great luxury of having somewhat decent health insurance with my husband's job (from the city of NY). Maybe someone else in the group has some info for you. I will put my thinking cap on! It is hard enough to be sick without having to worry about money. Just for today, why not try to put it on the back burner and concentrate on feeling the best you can. I'm praying for you. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 1999 Report Share Posted October 5, 1999 Biddy, Have you applied for Social Sercurity disability? If you can apply for that then you will automatically be eligible for medi-caid which will cover 100% of everthing. I know that qualified and now it will all be covered. One less thing to worry about. Even if they say your husband makes too much money for you to recieve a monetary benefit you would still be able to get he medical coverage. All you have to do is go to your local SS office and pick up the paperwork and fill it out get all your doctor's statemnets and medical releases and then wait. If you want you can also call your local office and they will mail the forms to you as well as if you need and ask for help they will arrange a phone appointment and go throught he paperwork with you that way. Definitely worth checking into. If you need any help or have questions feel free to e-mail privately or in the group hon. Good luck! Love ya bunches Marcy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 1999 Report Share Posted October 5, 1999 Biddy, Have you applied for Social Sercurity disability? If you can apply for that then you will automatically be eligible for medi-caid which will cover 100% of everthing. I know that qualified and now it will all be covered. One less thing to worry about. Even if they say your husband makes too much money for you to recieve a monetary benefit you would still be able to get he medical coverage. All you have to do is go to your local SS office and pick up the paperwork and fill it out get all your doctor's statemnets and medical releases and then wait. If you want you can also call your local office and they will mail the forms to you as well as if you need and ask for help they will arrange a phone appointment and go throught he paperwork with you that way. Definitely worth checking into. If you need any help or have questions feel free to e-mail privately or in the group hon. Good luck! Love ya bunches Marcy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 1999 Report Share Posted October 5, 1999 Biddy, Have you applied for Social Sercurity disability? If you can apply for that then you will automatically be eligible for medi-caid which will cover 100% of everthing. I know that qualified and now it will all be covered. One less thing to worry about. Even if they say your husband makes too much money for you to recieve a monetary benefit you would still be able to get he medical coverage. All you have to do is go to your local SS office and pick up the paperwork and fill it out get all your doctor's statemnets and medical releases and then wait. If you want you can also call your local office and they will mail the forms to you as well as if you need and ask for help they will arrange a phone appointment and go throught he paperwork with you that way. Definitely worth checking into. If you need any help or have questions feel free to e-mail privately or in the group hon. Good luck! Love ya bunches Marcy Quote Link to comment Share on other sites More sharing options...
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