Guest guest Posted May 14, 2001 Report Share Posted May 14, 2001 Kathy, What worries me most, though, is that just like her mother, she will call when she is old and no one comes to visit her. Well, why would I want to? So she can make me feel guilty? Like her mother does to her now? I told my SO I should talk to her about that now, before it's too late, and he said, " Remember, it's impossible to have a serious conversation with your mother. " Oh yeah...I forgot. >From: faydra913@... >Reply-To: >To: >Subject: Re: Thanks! >Date: Mon, 14 May 2001 12:28:24 EDT > >, > How come some of our mother's just don't get it. If one of my >daughter's >had this I would try to help in every way I knew how even though I'm sick >too. I would NEVER dismiss my kids pain. > >Kathy D. >Diagnosed in 98 >Live in Western Massachusetts >Married for almost 19yrs, to a sweetheart >Mother to 16 and 14 >My Rottie dog Shelby >Spooky the cat >Hobbies: Boating, Learning this computer > Arts & Crafts, and a passionate reader > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2001 Report Share Posted May 14, 2001 Kathy, What worries me most, though, is that just like her mother, she will call when she is old and no one comes to visit her. Well, why would I want to? So she can make me feel guilty? Like her mother does to her now? I told my SO I should talk to her about that now, before it's too late, and he said, " Remember, it's impossible to have a serious conversation with your mother. " Oh yeah...I forgot. >From: faydra913@... >Reply-To: >To: >Subject: Re: Thanks! >Date: Mon, 14 May 2001 12:28:24 EDT > >, > How come some of our mother's just don't get it. If one of my >daughter's >had this I would try to help in every way I knew how even though I'm sick >too. I would NEVER dismiss my kids pain. > >Kathy D. >Diagnosed in 98 >Live in Western Massachusetts >Married for almost 19yrs, to a sweetheart >Mother to 16 and 14 >My Rottie dog Shelby >Spooky the cat >Hobbies: Boating, Learning this computer > Arts & Crafts, and a passionate reader > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2001 Report Share Posted May 14, 2001 Kathy, What worries me most, though, is that just like her mother, she will call when she is old and no one comes to visit her. Well, why would I want to? So she can make me feel guilty? Like her mother does to her now? I told my SO I should talk to her about that now, before it's too late, and he said, " Remember, it's impossible to have a serious conversation with your mother. " Oh yeah...I forgot. >From: faydra913@... >Reply-To: >To: >Subject: Re: Thanks! >Date: Mon, 14 May 2001 12:28:24 EDT > >, > How come some of our mother's just don't get it. If one of my >daughter's >had this I would try to help in every way I knew how even though I'm sick >too. I would NEVER dismiss my kids pain. > >Kathy D. >Diagnosed in 98 >Live in Western Massachusetts >Married for almost 19yrs, to a sweetheart >Mother to 16 and 14 >My Rottie dog Shelby >Spooky the cat >Hobbies: Boating, Learning this computer > Arts & Crafts, and a passionate reader > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2001 Report Share Posted May 15, 2001 abraxis3@... Hi Kathy, Does your therapist truly know about and accept this illness? If so, how did you find one? My experience has been that they either don't know what it is, or they treat you like, ya, uh-huh, and roll their eyes!!! Have a great day! Sue --- faydra913@... wrote: > Sue, Thanks for the words of wisdom. I go to > therapy to learn how to deal > and help others deal with the fact that I am no > longer the person I was. My > family understands, especially, hubby. He sends me > a e-mail every day wi > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2001 Report Share Posted May 15, 2001 How come some of our mother's just don't get it. If one of my daughter's had this I would try to help in every way I knew how even though I'm sick too. I would NEVER dismiss my kids pain. Kathy D. I just thought I'd list a few things that came to my mind when I read this. None of them are directed at any one mother in particular. -they think if you're in pain, they've failed as a mother -they are self centered -they're afraid that if you pay too much attention to yourself that you won't have any left for them. -they think they're helping -they really don't believe that the doctor/you know what you are talking about -they think they are directing you in a way that you'll get better -that's not what they would do in your situation, so they don't think you should do it -they are afraid of loosing you, so are trying to push you away so it won't hurt so much -they're just plain afraid of everything and are lashing out at you. Guess this could apply to friends or spouses as well. Darcy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2001 Report Share Posted May 15, 2001 How come some of our mother's just don't get it. If one of my daughter's had this I would try to help in every way I knew how even though I'm sick too. I would NEVER dismiss my kids pain. Kathy D. I just thought I'd list a few things that came to my mind when I read this. None of them are directed at any one mother in particular. -they think if you're in pain, they've failed as a mother -they are self centered -they're afraid that if you pay too much attention to yourself that you won't have any left for them. -they think they're helping -they really don't believe that the doctor/you know what you are talking about -they think they are directing you in a way that you'll get better -that's not what they would do in your situation, so they don't think you should do it -they are afraid of loosing you, so are trying to push you away so it won't hurt so much -they're just plain afraid of everything and are lashing out at you. Guess this could apply to friends or spouses as well. Darcy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2001 Report Share Posted May 15, 2001 How come some of our mother's just don't get it. If one of my daughter's had this I would try to help in every way I knew how even though I'm sick too. I would NEVER dismiss my kids pain. Kathy D. I just thought I'd list a few things that came to my mind when I read this. None of them are directed at any one mother in particular. -they think if you're in pain, they've failed as a mother -they are self centered -they're afraid that if you pay too much attention to yourself that you won't have any left for them. -they think they're helping -they really don't believe that the doctor/you know what you are talking about -they think they are directing you in a way that you'll get better -that's not what they would do in your situation, so they don't think you should do it -they are afraid of loosing you, so are trying to push you away so it won't hurt so much -they're just plain afraid of everything and are lashing out at you. Guess this could apply to friends or spouses as well. Darcy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2002 Report Share Posted January 17, 2002 HI , You may not want your TSH climbing any higher, or at least not much higher or you will start to see the hypo symptoms emerge. If my TSH goes above 1.0 I feel lousy. Even my doctor has said to me that people with Graves Disease need their TSH to be kept on the very low end of normal. Jody _________________________________________________________________ Chat with friends online, try MSN Messenger: http://messenger.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2002 Report Share Posted January 17, 2002 HI , You may not want your TSH climbing any higher, or at least not much higher or you will start to see the hypo symptoms emerge. If my TSH goes above 1.0 I feel lousy. Even my doctor has said to me that people with Graves Disease need their TSH to be kept on the very low end of normal. Jody _________________________________________________________________ Chat with friends online, try MSN Messenger: http://messenger.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2002 Report Share Posted January 17, 2002 I don't feel too tired during the day, but I *have* been sleeping an awful lot--about 10 hours a night, and I'm still tired when I wake up. I used to be an 8-hour-a-night person... > HI , > You may not want your TSH climbing any higher, or at least not much higher > or you will start to see the hypo symptoms emerge. If my TSH goes above 1.0 > I feel lousy. Even my doctor has said to me that people with Graves Disease > need their TSH to be kept on the very low end of normal. > Jody > > > > _________________________________________________________________ > Chat with friends online, try MSN Messenger: http://messenger.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2002 Report Share Posted January 17, 2002 I don't feel too tired during the day, but I *have* been sleeping an awful lot--about 10 hours a night, and I'm still tired when I wake up. I used to be an 8-hour-a-night person... > HI , > You may not want your TSH climbing any higher, or at least not much higher > or you will start to see the hypo symptoms emerge. If my TSH goes above 1.0 > I feel lousy. Even my doctor has said to me that people with Graves Disease > need their TSH to be kept on the very low end of normal. > Jody > > > > _________________________________________________________________ > Chat with friends online, try MSN Messenger: http://messenger.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2003 Report Share Posted July 18, 2003 and Bob Wanting a diagnosis of MM or MG is not bad. I was in the same spot. I am able to deal with the worst of things as long as I know what I am dealing with. It took 15 years for a correct diagnosis, so I was hoping for the same thing. My greatest fear when I went to Atlanta, was that they wouldn't find mito. laurie > > Reply-To: > Date: Fri, 18 Jul 2003 19:56:45 -0000 > To: > Subject: Thanks! > > Thank you to everyone who responded to Bob's questions. I continue to > read your posts and we will let you know how the muscle biopsy turns > out next Thursday. > > As bad as this sounds, I hope they find that he does have MM or MG > just so we can put a name to these problems, start some kind of > treatment and work with the SS office. Although, I guess we are > pretty lucky that we have an aggressive neuro. I'm sure everyone > knows people who have gone years undx or misdx. Symptom-wise, for Bob, > it's been only a year or so. > > Again, thanks everyone! > > and Bob > > > PS. Has anyone been dx with an acoustic neuroma? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2003 Report Share Posted July 18, 2003 and Bob Wanting a diagnosis of MM or MG is not bad. I was in the same spot. I am able to deal with the worst of things as long as I know what I am dealing with. It took 15 years for a correct diagnosis, so I was hoping for the same thing. My greatest fear when I went to Atlanta, was that they wouldn't find mito. laurie > > Reply-To: > Date: Fri, 18 Jul 2003 19:56:45 -0000 > To: > Subject: Thanks! > > Thank you to everyone who responded to Bob's questions. I continue to > read your posts and we will let you know how the muscle biopsy turns > out next Thursday. > > As bad as this sounds, I hope they find that he does have MM or MG > just so we can put a name to these problems, start some kind of > treatment and work with the SS office. Although, I guess we are > pretty lucky that we have an aggressive neuro. I'm sure everyone > knows people who have gone years undx or misdx. Symptom-wise, for Bob, > it's been only a year or so. > > Again, thanks everyone! > > and Bob > > > PS. Has anyone been dx with an acoustic neuroma? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2003 Report Share Posted July 18, 2003 and Bob, Welcome to the group, although I am sorry for the reasons you need to be here. I did not get a chance to answer your last post, but others did a good job. I understand your hoping that they find a diagnosis of MM or MG. I was the same way. It only took me 4 years to receive my diagnosis of mitochondrial cytopathy, but I was relieved to have a name. I could deal with things that came my way then. I am on SSD, but I really can't help you with your questions. I am 26 and had to retire from teaching in 2002, after my first mini-stroke. I was on SSI throughout college, a "just-in-case" move on my dad's part so I would be covered by insurance in case something happened to him. He also knew that I probably wouldn't be able to work for more than a few years (although he didn't tell me that at the time). Since I had already been accepted, after one appeal, in college, I was put back on when the doctors decided I couldn't work. I am one of the lucky ones in that aspect. I wish the best for you and please keep us updated and ask any questions that you want. Smiles, a Thank you to everyone who responded to Bob's questions. I continue toread your posts and we will let you know how the muscle biopsy turnsout next Thursday.As bad as this sounds, I hope they find that he does have MM or MGjust so we can put a name to these problems, start some kind oftreatment and work with the SS office. Although, I guess we arepretty lucky that we have an aggressive neuro. I'm sure everyoneknows people who have gone years undx or misdx. Symptom-wise, for Bob,it's been only a year or so.Again, thanks everyone! and Bob Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2003 Report Share Posted July 18, 2003 and Bob, Welcome to the group, although I am sorry for the reasons you need to be here. I did not get a chance to answer your last post, but others did a good job. I understand your hoping that they find a diagnosis of MM or MG. I was the same way. It only took me 4 years to receive my diagnosis of mitochondrial cytopathy, but I was relieved to have a name. I could deal with things that came my way then. I am on SSD, but I really can't help you with your questions. I am 26 and had to retire from teaching in 2002, after my first mini-stroke. I was on SSI throughout college, a "just-in-case" move on my dad's part so I would be covered by insurance in case something happened to him. He also knew that I probably wouldn't be able to work for more than a few years (although he didn't tell me that at the time). Since I had already been accepted, after one appeal, in college, I was put back on when the doctors decided I couldn't work. I am one of the lucky ones in that aspect. I wish the best for you and please keep us updated and ask any questions that you want. Smiles, a Thank you to everyone who responded to Bob's questions. I continue toread your posts and we will let you know how the muscle biopsy turnsout next Thursday.As bad as this sounds, I hope they find that he does have MM or MGjust so we can put a name to these problems, start some kind oftreatment and work with the SS office. Although, I guess we arepretty lucky that we have an aggressive neuro. I'm sure everyoneknows people who have gone years undx or misdx. Symptom-wise, for Bob,it's been only a year or so.Again, thanks everyone! and Bob Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2003 Report Share Posted July 19, 2003 Hi and Bob, I am like Laurie...it took many many years for a diagnosis. I also was desparate for a name so that I could deal with the problems. With the name, came solutions, adaptions, support, acceptance and emotional health as a result. Ruth Thanks!> > Thank you to everyone who responded to Bob's questions. I continue to> read your posts and we will let you know how the muscle biopsy turns> out next Thursday.> > As bad as this sounds, I hope they find that he does have MM or MG> just so we can put a name to these problems, start some kind of> treatment and work with the SS office. Although, I guess we are> pretty lucky that we have an aggressive neuro. I'm sure everyone> knows people who have gone years undx or misdx. Symptom-wise, for Bob,> it's been only a year or so.> > Again, thanks everyone!> > and Bob > > > PS. Has anyone been dx with an acoustic neuroma?> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2003 Report Share Posted July 19, 2003 -Dear and Bob, Gosh! Do I know how you feel. I have had my " disease " for 15 years now and no definitive diagnosis (actually your 15 years gives me hope Laurie) I have been variously diagnosed with connective tissue disease, MG and most recently Mito. I have a weird assortiment of positive test results but nothing definitive. I would give my eye teeth to have a definite diagnosis and thus a more definitive treatment plan. At least then I'd have a label to present to new docs instead of always having to explain the situation and (sometimes) accepting their pure scepticism. Good luck to you and Bob! Celia- - In , Laureta Fitzgerald <lfitzger@j...> wrote: > and Bob > > Wanting a diagnosis of MM or MG is not bad. I was in the same spot. I am > able to deal with the worst of things as long as I know what I am dealing > with. It took 15 years for a correct diagnosis, so I was hoping for the same > thing. My greatest fear when I went to Atlanta, was that they wouldn't find > mito. > > laurie > > > From: " " <cindy.roo@v...> > > Reply-To: > > Date: Fri, 18 Jul 2003 19:56:45 -0000 > > To: > > Subject: Thanks! > > > > Thank you to everyone who responded to Bob's questions. I continue to > > read your posts and we will let you know how the muscle biopsy turns > > out next Thursday. > > > > As bad as this sounds, I hope they find that he does have MM or MG > > just so we can put a name to these problems, start some kind of > > treatment and work with the SS office. Although, I guess we are > > pretty lucky that we have an aggressive neuro. I'm sure everyone > > knows people who have gone years undx or misdx. Symptom-wise, for Bob, > > it's been only a year or so. > > > > Again, thanks everyone! > > > > and Bob > > > > > > PS. Has anyone been dx with an acoustic neuroma? > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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