Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 .. I don't visit friends because #1. I forget to call, #2. I can find nothing to talk about. I can think of two or three things and then I am stumped. So, I find my whole world getting smaller and smaller. Barb, I can so relate. It is such a loss when you find that the only conversations you have is about what you're doing to take care of you. I too am finding that it's harder and harder to socialize, and as I sit with a friend for lunch--- and they tell me about the vacation they just took, or the concerts they went to, or the mountain they hiked (my husband is going off next week to backpack the Trinity Mountain Range, and the week after to end up in the Marble Mountains) and I'll listen to him tell me the stories, and then have to sit thru it again when he tells his mom, and so on. I was thinking today about a trip that we wanted to take to Canada, and I know it won't happen, so I will live vicariously thru someone else's trip. I keep telling myself that this is ok. I'm still alive and kicking. Well, at least I'm still kicking- but right now it's with a bit of anger. Guess I'll have to figure that out also-- I am one who hates to waste my precious energy on feeling angry. So, when I'm ready, I'll have to try to find my bootstraps and pull on the boots, dust them off, and get on with life. Today though, I'll let myself be a bit angry. At least I'm doing something. Take care, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 .. I don't visit friends because #1. I forget to call, #2. I can find nothing to talk about. I can think of two or three things and then I am stumped. So, I find my whole world getting smaller and smaller. Barb, I can so relate. It is such a loss when you find that the only conversations you have is about what you're doing to take care of you. I too am finding that it's harder and harder to socialize, and as I sit with a friend for lunch--- and they tell me about the vacation they just took, or the concerts they went to, or the mountain they hiked (my husband is going off next week to backpack the Trinity Mountain Range, and the week after to end up in the Marble Mountains) and I'll listen to him tell me the stories, and then have to sit thru it again when he tells his mom, and so on. I was thinking today about a trip that we wanted to take to Canada, and I know it won't happen, so I will live vicariously thru someone else's trip. I keep telling myself that this is ok. I'm still alive and kicking. Well, at least I'm still kicking- but right now it's with a bit of anger. Guess I'll have to figure that out also-- I am one who hates to waste my precious energy on feeling angry. So, when I'm ready, I'll have to try to find my bootstraps and pull on the boots, dust them off, and get on with life. Today though, I'll let myself be a bit angry. At least I'm doing something. Take care, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 .. I don't visit friends because #1. I forget to call, #2. I can find nothing to talk about. I can think of two or three things and then I am stumped. So, I find my whole world getting smaller and smaller. Barb, I can so relate. It is such a loss when you find that the only conversations you have is about what you're doing to take care of you. I too am finding that it's harder and harder to socialize, and as I sit with a friend for lunch--- and they tell me about the vacation they just took, or the concerts they went to, or the mountain they hiked (my husband is going off next week to backpack the Trinity Mountain Range, and the week after to end up in the Marble Mountains) and I'll listen to him tell me the stories, and then have to sit thru it again when he tells his mom, and so on. I was thinking today about a trip that we wanted to take to Canada, and I know it won't happen, so I will live vicariously thru someone else's trip. I keep telling myself that this is ok. I'm still alive and kicking. Well, at least I'm still kicking- but right now it's with a bit of anger. Guess I'll have to figure that out also-- I am one who hates to waste my precious energy on feeling angry. So, when I'm ready, I'll have to try to find my bootstraps and pull on the boots, dust them off, and get on with life. Today though, I'll let myself be a bit angry. At least I'm doing something. Take care, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 I was telling my Doctor that I am going to retire to the smokies but I cannot do that until my youngest grandchild gets into school. That will be another five years. He said, "do you know how old and infirm you will be in five years?" I just told him that due to my cognitive decline I did not know that and he shouldn't tell me. Barb, I've been fighting this disease for 14 yrs now. Six years ago, the MD's told me i had 5-7 yrs to live. Well, the first 5 are gone. So, I'm in year one of the 7 yrs. It's all about attitude. (Tonight, my husband would tell you I have one. .) I was watching a bit of LIME TV-- and they had Joan Boryshanko(sp) on and she did a show on how attitude effects our healing. I know we can't "think" ourself well. We didn't and aren't "thinking" ourself sick. I've finally have come to the place where the term "disease' means illness- that doesn't go away. Instead of the dis-ease that so many self help books want us to adopt. Screw that-- I'm sick, I know I'm sick. I don't want to be sick, and I don't want to have to figure out what to do next because I am sick. Can I embrace myself in this sickness-- sure, but why can't someone else embrace me for awhile. Why do I have to ask my husband to hold me, to let me cry, to not go off in how wonderful he feels following his hour on the treadmill and 45 mins on the exercise bike. And hey, he's lost 22 pounds in the last 4 months and if we all exercised and cut the crap out of our diets-- we'd be feeling great too. Screw it. I have found all the weight he's lost this last year, and it's taken residence in my belly. It's 3 immunosupressants, antidepressants, anti-seizure meds for neuralgia, diabetic meds and heart meds --all with the same stinking side effect. Weight gain. Screw it. I don't want to play anymore. This game has lost it's interest, it's challenge, and I call a truce. I quit. I think I'll go to the garden and eat worms. Thank you for all your support-- I'm just having a good old fashion pity party. Maybe by tomorrow, I'll be out of this mood. Tonight, though, I think I'll kick a can--far. Love ya all, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 I was telling my Doctor that I am going to retire to the smokies but I cannot do that until my youngest grandchild gets into school. That will be another five years. He said, "do you know how old and infirm you will be in five years?" I just told him that due to my cognitive decline I did not know that and he shouldn't tell me. Barb, I've been fighting this disease for 14 yrs now. Six years ago, the MD's told me i had 5-7 yrs to live. Well, the first 5 are gone. So, I'm in year one of the 7 yrs. It's all about attitude. (Tonight, my husband would tell you I have one. .) I was watching a bit of LIME TV-- and they had Joan Boryshanko(sp) on and she did a show on how attitude effects our healing. I know we can't "think" ourself well. We didn't and aren't "thinking" ourself sick. I've finally have come to the place where the term "disease' means illness- that doesn't go away. Instead of the dis-ease that so many self help books want us to adopt. Screw that-- I'm sick, I know I'm sick. I don't want to be sick, and I don't want to have to figure out what to do next because I am sick. Can I embrace myself in this sickness-- sure, but why can't someone else embrace me for awhile. Why do I have to ask my husband to hold me, to let me cry, to not go off in how wonderful he feels following his hour on the treadmill and 45 mins on the exercise bike. And hey, he's lost 22 pounds in the last 4 months and if we all exercised and cut the crap out of our diets-- we'd be feeling great too. Screw it. I have found all the weight he's lost this last year, and it's taken residence in my belly. It's 3 immunosupressants, antidepressants, anti-seizure meds for neuralgia, diabetic meds and heart meds --all with the same stinking side effect. Weight gain. Screw it. I don't want to play anymore. This game has lost it's interest, it's challenge, and I call a truce. I quit. I think I'll go to the garden and eat worms. Thank you for all your support-- I'm just having a good old fashion pity party. Maybe by tomorrow, I'll be out of this mood. Tonight, though, I think I'll kick a can--far. Love ya all, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 Tracie, My husband did a lot of mountain climbing, living in Colorado, he and his brother who lives in Denver have been up many mountains, even Mt. Rainer in Wash. State. However, even when I was able to do it, I had no interest in it, so seeing the pictures work just fine for me, I love looking at the pictures, I have one where my husband took our boys when they were little and it’s one of my favorite pictures. Taking in the view without leaving home, works for me. But I’m sure it can be frustrating for you, if you used go with him. Sit back and enjoy the pictures, go easy on yourself, you are hiking every day now, so at the end of the day just think “I made it to the top”J And you help many of us here make it to the top too! Thank you. Blessings, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@... Sent: Monday, July 17, 2006 3:14 PM To: Neurosarcoidosis Subject: Re: sHRINKING WORLD In a message dated 7/17/06 1:19:25 AM Pacific Daylight Time, statpdq@... writes: .. I don't visit friends because #1. I forget to call, #2. I can find nothing to talk about. I can think of two or three things and then I am stumped. So, I find my whole world getting smaller and smaller. Barb, I can so relate. It is such a loss when you find that the only conversations you have is about what you're doing to take care of you. I too am finding that it's harder and harder to socialize, and as I sit with a friend for lunch--- and they tell me about the vacation they just took, or the concerts they went to, or the mountain they hiked (my husband is going off next week to backpack the Trinity Mountain Range, and the week after to end up in the Marble Mountains) and I'll listen to him tell me the stories, and then have to sit thru it again when he tells his mom, and so on. I was thinking today about a trip that we wanted to take to Canada, and I know it won't happen, so I will live vicariously thru someone else's trip. I keep telling myself that this is ok. I'm still alive and kicking. Well, at least I'm still kicking- but right now it's with a bit of anger. Guess I'll have to figure that out also-- I am one who hates to waste my precious energy on feeling angry. So, when I'm ready, I'll have to try to find my bootstraps and pull on the boots, dust them off, and get on with life. Today though, I'll let myself be a bit angry. At least I'm doing something. Take care, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 Tracie, My husband did a lot of mountain climbing, living in Colorado, he and his brother who lives in Denver have been up many mountains, even Mt. Rainer in Wash. State. However, even when I was able to do it, I had no interest in it, so seeing the pictures work just fine for me, I love looking at the pictures, I have one where my husband took our boys when they were little and it’s one of my favorite pictures. Taking in the view without leaving home, works for me. But I’m sure it can be frustrating for you, if you used go with him. Sit back and enjoy the pictures, go easy on yourself, you are hiking every day now, so at the end of the day just think “I made it to the top”J And you help many of us here make it to the top too! Thank you. Blessings, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@... Sent: Monday, July 17, 2006 3:14 PM To: Neurosarcoidosis Subject: Re: sHRINKING WORLD In a message dated 7/17/06 1:19:25 AM Pacific Daylight Time, statpdq@... writes: .. I don't visit friends because #1. I forget to call, #2. I can find nothing to talk about. I can think of two or three things and then I am stumped. So, I find my whole world getting smaller and smaller. Barb, I can so relate. It is such a loss when you find that the only conversations you have is about what you're doing to take care of you. I too am finding that it's harder and harder to socialize, and as I sit with a friend for lunch--- and they tell me about the vacation they just took, or the concerts they went to, or the mountain they hiked (my husband is going off next week to backpack the Trinity Mountain Range, and the week after to end up in the Marble Mountains) and I'll listen to him tell me the stories, and then have to sit thru it again when he tells his mom, and so on. I was thinking today about a trip that we wanted to take to Canada, and I know it won't happen, so I will live vicariously thru someone else's trip. I keep telling myself that this is ok. I'm still alive and kicking. Well, at least I'm still kicking- but right now it's with a bit of anger. Guess I'll have to figure that out also-- I am one who hates to waste my precious energy on feeling angry. So, when I'm ready, I'll have to try to find my bootstraps and pull on the boots, dust them off, and get on with life. Today though, I'll let myself be a bit angry. At least I'm doing something. Take care, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 Tracie, My husband did a lot of mountain climbing, living in Colorado, he and his brother who lives in Denver have been up many mountains, even Mt. Rainer in Wash. State. However, even when I was able to do it, I had no interest in it, so seeing the pictures work just fine for me, I love looking at the pictures, I have one where my husband took our boys when they were little and it’s one of my favorite pictures. Taking in the view without leaving home, works for me. But I’m sure it can be frustrating for you, if you used go with him. Sit back and enjoy the pictures, go easy on yourself, you are hiking every day now, so at the end of the day just think “I made it to the top”J And you help many of us here make it to the top too! Thank you. Blessings, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@... Sent: Monday, July 17, 2006 3:14 PM To: Neurosarcoidosis Subject: Re: sHRINKING WORLD In a message dated 7/17/06 1:19:25 AM Pacific Daylight Time, statpdq@... writes: .. I don't visit friends because #1. I forget to call, #2. I can find nothing to talk about. I can think of two or three things and then I am stumped. So, I find my whole world getting smaller and smaller. Barb, I can so relate. It is such a loss when you find that the only conversations you have is about what you're doing to take care of you. I too am finding that it's harder and harder to socialize, and as I sit with a friend for lunch--- and they tell me about the vacation they just took, or the concerts they went to, or the mountain they hiked (my husband is going off next week to backpack the Trinity Mountain Range, and the week after to end up in the Marble Mountains) and I'll listen to him tell me the stories, and then have to sit thru it again when he tells his mom, and so on. I was thinking today about a trip that we wanted to take to Canada, and I know it won't happen, so I will live vicariously thru someone else's trip. I keep telling myself that this is ok. I'm still alive and kicking. Well, at least I'm still kicking- but right now it's with a bit of anger. Guess I'll have to figure that out also-- I am one who hates to waste my precious energy on feeling angry. So, when I'm ready, I'll have to try to find my bootstraps and pull on the boots, dust them off, and get on with life. Today though, I'll let myself be a bit angry. At least I'm doing something. Take care, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2006 Report Share Posted July 18, 2006 Well Tracie, Sounds like you’ve already beaten the odds, you go girl! Sometimes we do need to have a pity party, then pick yourself off, dust off the yuck and realize that you have so much to offer this world! You are a rock for this site, and a very special person. If tomorrow comes, (and we truly never know) then it will be a better day. I too hate hearing that if I exercised more, and ate less chocolate I will feel better, so OK I exercise, and make it like 10 mins on the treadmill, and want someone to be proud of me, and get “that’s all just 10 mins”, they don’t realize that, that 10 mins almost killed me! Oh well, I just smile, and take it one day, one hour, one minute at a time, it’s just easier that way. I find in this house hold that my husband’s attitude can bring the bunch down in less then 15 secs, so again I just have to smile, and it’s not always easy. OK I think I’m just going on, you just remember girl how much you are loved here, by so many and smileJ Blessings to you today, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@... Sent: Monday, July 17, 2006 11:13 PM To: Neurosarcoidosis Subject: Re: sHRINKING WORLD In a message dated 7/17/06 8:51:52 PM Pacific Daylight Time, statpdq@... writes: I was telling my Doctor that I am going to retire to the smokies but I cannot do that until my youngest grandchild gets into school. That will be another five years. He said, " do you know how old and infirm you will be in five years? " I just told him that due to my cognitive decline I did not know that and he shouldn't tell me. Barb, I've been fighting this disease for 14 yrs now. Six years ago, the MD's told me i had 5-7 yrs to live. Well, the first 5 are gone. So, I'm in year one of the 7 yrs. It's all about attitude. (Tonight, my husband would tell you I have one. ..) I was watching a bit of LIME TV-- and they had Joan Boryshanko(sp) on and she did a show on how attitude effects our healing. I know we can't " think " ourself well. We didn't and aren't " thinking " ourself sick. I've finally have come to the place where the term " disease' means illness- that doesn't go away. Instead of the dis-ease that so many self help books want us to adopt. Screw that-- I'm sick, I know I'm sick. I don't want to be sick, and I don't want to have to figure out what to do next because I am sick. Can I embrace myself in this sickness-- sure, but why can't someone else embrace me for awhile. Why do I have to ask my husband to hold me, to let me cry, to not go off in how wonderful he feels following his hour on the treadmill and 45 mins on the exercise bike. And hey, he's lost 22 pounds in the last 4 months and if we all exercised and cut the crap out of our diets-- we'd be feeling great too. Screw it. I have found all the weight he's lost this last year, and it's taken residence in my belly. It's 3 immunosupressants, antidepressants, anti-seizure meds for neuralgia, diabetic meds and heart meds --all with the same stinking side effect. Weight gain. Screw it. I don't want to play anymore. This game has lost it's interest, it's challenge, and I call a truce. I quit. I think I'll go to the garden and eat worms. Thank you for all your support-- I'm just having a good old fashion pity party. Maybe by tomorrow, I'll be out of this mood. Tonight, though, I think I'll kick a can--far. Love ya all, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2006 Report Share Posted July 18, 2006 Well Tracie, Sounds like you’ve already beaten the odds, you go girl! Sometimes we do need to have a pity party, then pick yourself off, dust off the yuck and realize that you have so much to offer this world! You are a rock for this site, and a very special person. If tomorrow comes, (and we truly never know) then it will be a better day. I too hate hearing that if I exercised more, and ate less chocolate I will feel better, so OK I exercise, and make it like 10 mins on the treadmill, and want someone to be proud of me, and get “that’s all just 10 mins”, they don’t realize that, that 10 mins almost killed me! Oh well, I just smile, and take it one day, one hour, one minute at a time, it’s just easier that way. I find in this house hold that my husband’s attitude can bring the bunch down in less then 15 secs, so again I just have to smile, and it’s not always easy. OK I think I’m just going on, you just remember girl how much you are loved here, by so many and smileJ Blessings to you today, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@... Sent: Monday, July 17, 2006 11:13 PM To: Neurosarcoidosis Subject: Re: sHRINKING WORLD In a message dated 7/17/06 8:51:52 PM Pacific Daylight Time, statpdq@... writes: I was telling my Doctor that I am going to retire to the smokies but I cannot do that until my youngest grandchild gets into school. That will be another five years. He said, " do you know how old and infirm you will be in five years? " I just told him that due to my cognitive decline I did not know that and he shouldn't tell me. Barb, I've been fighting this disease for 14 yrs now. Six years ago, the MD's told me i had 5-7 yrs to live. Well, the first 5 are gone. So, I'm in year one of the 7 yrs. It's all about attitude. (Tonight, my husband would tell you I have one. ..) I was watching a bit of LIME TV-- and they had Joan Boryshanko(sp) on and she did a show on how attitude effects our healing. I know we can't " think " ourself well. We didn't and aren't " thinking " ourself sick. I've finally have come to the place where the term " disease' means illness- that doesn't go away. Instead of the dis-ease that so many self help books want us to adopt. Screw that-- I'm sick, I know I'm sick. I don't want to be sick, and I don't want to have to figure out what to do next because I am sick. Can I embrace myself in this sickness-- sure, but why can't someone else embrace me for awhile. Why do I have to ask my husband to hold me, to let me cry, to not go off in how wonderful he feels following his hour on the treadmill and 45 mins on the exercise bike. And hey, he's lost 22 pounds in the last 4 months and if we all exercised and cut the crap out of our diets-- we'd be feeling great too. Screw it. I have found all the weight he's lost this last year, and it's taken residence in my belly. It's 3 immunosupressants, antidepressants, anti-seizure meds for neuralgia, diabetic meds and heart meds --all with the same stinking side effect. Weight gain. Screw it. I don't want to play anymore. This game has lost it's interest, it's challenge, and I call a truce. I quit. I think I'll go to the garden and eat worms. Thank you for all your support-- I'm just having a good old fashion pity party. Maybe by tomorrow, I'll be out of this mood. Tonight, though, I think I'll kick a can--far. Love ya all, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2006 Report Share Posted July 18, 2006 Well Tracie, Sounds like you’ve already beaten the odds, you go girl! Sometimes we do need to have a pity party, then pick yourself off, dust off the yuck and realize that you have so much to offer this world! You are a rock for this site, and a very special person. If tomorrow comes, (and we truly never know) then it will be a better day. I too hate hearing that if I exercised more, and ate less chocolate I will feel better, so OK I exercise, and make it like 10 mins on the treadmill, and want someone to be proud of me, and get “that’s all just 10 mins”, they don’t realize that, that 10 mins almost killed me! Oh well, I just smile, and take it one day, one hour, one minute at a time, it’s just easier that way. I find in this house hold that my husband’s attitude can bring the bunch down in less then 15 secs, so again I just have to smile, and it’s not always easy. OK I think I’m just going on, you just remember girl how much you are loved here, by so many and smileJ Blessings to you today, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@... Sent: Monday, July 17, 2006 11:13 PM To: Neurosarcoidosis Subject: Re: sHRINKING WORLD In a message dated 7/17/06 8:51:52 PM Pacific Daylight Time, statpdq@... writes: I was telling my Doctor that I am going to retire to the smokies but I cannot do that until my youngest grandchild gets into school. That will be another five years. He said, " do you know how old and infirm you will be in five years? " I just told him that due to my cognitive decline I did not know that and he shouldn't tell me. Barb, I've been fighting this disease for 14 yrs now. Six years ago, the MD's told me i had 5-7 yrs to live. Well, the first 5 are gone. So, I'm in year one of the 7 yrs. It's all about attitude. (Tonight, my husband would tell you I have one. ..) I was watching a bit of LIME TV-- and they had Joan Boryshanko(sp) on and she did a show on how attitude effects our healing. I know we can't " think " ourself well. We didn't and aren't " thinking " ourself sick. I've finally have come to the place where the term " disease' means illness- that doesn't go away. Instead of the dis-ease that so many self help books want us to adopt. Screw that-- I'm sick, I know I'm sick. I don't want to be sick, and I don't want to have to figure out what to do next because I am sick. Can I embrace myself in this sickness-- sure, but why can't someone else embrace me for awhile. Why do I have to ask my husband to hold me, to let me cry, to not go off in how wonderful he feels following his hour on the treadmill and 45 mins on the exercise bike. And hey, he's lost 22 pounds in the last 4 months and if we all exercised and cut the crap out of our diets-- we'd be feeling great too. Screw it. I have found all the weight he's lost this last year, and it's taken residence in my belly. It's 3 immunosupressants, antidepressants, anti-seizure meds for neuralgia, diabetic meds and heart meds --all with the same stinking side effect. Weight gain. Screw it. I don't want to play anymore. This game has lost it's interest, it's challenge, and I call a truce. I quit. I think I'll go to the garden and eat worms. Thank you for all your support-- I'm just having a good old fashion pity party. Maybe by tomorrow, I'll be out of this mood. Tonight, though, I think I'll kick a can--far. Love ya all, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2006 Report Share Posted July 18, 2006 Tracie, I know the feeling, my body can't keep up with my mind and it is so frustrating. My mind still wants to do things and still knows how, but my body goes " give me a break " . I get these grandious ideas every once in a while where I'm going to make my body do something. Trust me it doesn't last to long. There are so many beautiful places I would have liked to have seen, but I can tell from the little trips I try I would just drag everyone behind. It's hard sometimes, but I do at least enjoy getting to see the pictures and imagine for a little while. Please take care...Connie --- Marla mebramer@...> wrote: > Tracie, > > My husband did a lot of mountain climbing, living in > Colorado, he and his > brother who lives in Denver have been up many > mountains, even Mt. Rainer in > Wash. State. However, even when I was able to do > it, I had no interest in > it, so seeing the pictures work just fine for me, I > love looking at the > pictures, I have one where my husband took our boys > when they were little > and it's one of my favorite pictures. Taking in the > view without leaving > home, works for me. But I'm sure it can be > frustrating for you, if you used > go with him. Sit back and enjoy the pictures, go > easy on yourself, you are > hiking every day now, so at the end of the day just > think " I made it to the > top " :-) > > And you help many of us here make it to the top too! > Thank you. > > Blessings, > > Marla > > > > _____ > > From: Neurosarcoidosis > [mailto:Neurosarcoidosis ] On Behalf > Of tiodaat@... > Sent: Monday, July 17, 2006 3:14 PM > To: Neurosarcoidosis > Subject: Re: sHRINKING WORLD > > > > In a message dated 7/17/06 1:19:25 AM Pacific > Daylight Time, > statpdq@... writes: > > > > > . I don't visit friends because #1. I forget to > call, #2. I can find nothing > to talk about. I can think of two or three things > and then I am stumped. So, > I find my whole world getting smaller and smaller. > > > > Barb, > I can so relate. It is such a loss when you find > that the only > conversations you have is about what you're doing to > take care of you. > I too am finding that it's harder and harder to > socialize, and as I sit with > a friend for lunch--- and they tell me about the > vacation they just took, or > the concerts they went to, or the mountain they > hiked (my husband is going > off next week to backpack the Trinity Mountain > Range, and the week after to > end up in the Marble Mountains) and I'll listen to > him tell me the stories, > and then have to sit thru it again when he tells his > mom, and so on. > > I was thinking today about a trip that we wanted to > take to Canada, and I > know it won't happen, so I will live vicariously > thru someone else's trip. > > I keep telling myself that this is ok. I'm still > alive and kicking. Well, > at least I'm still kicking- but right now it's with > a bit of anger. Guess > I'll have to figure that out also-- I am one who > hates to waste my precious > energy on feeling angry. So, when I'm ready, I'll > have to try to find my > bootstraps and pull on the boots, dust them off, and > get on with life. > > Today though, I'll let myself be a bit angry. At > least I'm doing something. > > Take care, > Tracie > NS Co-owner/moderator > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2006 Report Share Posted July 18, 2006 Tracie, I know the feeling, my body can't keep up with my mind and it is so frustrating. My mind still wants to do things and still knows how, but my body goes " give me a break " . I get these grandious ideas every once in a while where I'm going to make my body do something. Trust me it doesn't last to long. There are so many beautiful places I would have liked to have seen, but I can tell from the little trips I try I would just drag everyone behind. It's hard sometimes, but I do at least enjoy getting to see the pictures and imagine for a little while. Please take care...Connie --- Marla mebramer@...> wrote: > Tracie, > > My husband did a lot of mountain climbing, living in > Colorado, he and his > brother who lives in Denver have been up many > mountains, even Mt. Rainer in > Wash. State. However, even when I was able to do > it, I had no interest in > it, so seeing the pictures work just fine for me, I > love looking at the > pictures, I have one where my husband took our boys > when they were little > and it's one of my favorite pictures. Taking in the > view without leaving > home, works for me. But I'm sure it can be > frustrating for you, if you used > go with him. Sit back and enjoy the pictures, go > easy on yourself, you are > hiking every day now, so at the end of the day just > think " I made it to the > top " :-) > > And you help many of us here make it to the top too! > Thank you. > > Blessings, > > Marla > > > > _____ > > From: Neurosarcoidosis > [mailto:Neurosarcoidosis ] On Behalf > Of tiodaat@... > Sent: Monday, July 17, 2006 3:14 PM > To: Neurosarcoidosis > Subject: Re: sHRINKING WORLD > > > > In a message dated 7/17/06 1:19:25 AM Pacific > Daylight Time, > statpdq@... writes: > > > > > . I don't visit friends because #1. I forget to > call, #2. I can find nothing > to talk about. I can think of two or three things > and then I am stumped. So, > I find my whole world getting smaller and smaller. > > > > Barb, > I can so relate. It is such a loss when you find > that the only > conversations you have is about what you're doing to > take care of you. > I too am finding that it's harder and harder to > socialize, and as I sit with > a friend for lunch--- and they tell me about the > vacation they just took, or > the concerts they went to, or the mountain they > hiked (my husband is going > off next week to backpack the Trinity Mountain > Range, and the week after to > end up in the Marble Mountains) and I'll listen to > him tell me the stories, > and then have to sit thru it again when he tells his > mom, and so on. > > I was thinking today about a trip that we wanted to > take to Canada, and I > know it won't happen, so I will live vicariously > thru someone else's trip. > > I keep telling myself that this is ok. I'm still > alive and kicking. Well, > at least I'm still kicking- but right now it's with > a bit of anger. Guess > I'll have to figure that out also-- I am one who > hates to waste my precious > energy on feeling angry. So, when I'm ready, I'll > have to try to find my > bootstraps and pull on the boots, dust them off, and > get on with life. > > Today though, I'll let myself be a bit angry. At > least I'm doing something. > > Take care, > Tracie > NS Co-owner/moderator > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2006 Report Share Posted July 18, 2006 Never stop dreaming Barb...God not doctors have the last word on where we can go, and how long we stay////Connie --- " barb J. " statpdq@...> wrote: > Tracie, > I know exactly what you mean. We recently had a > visit from my niece and her husband from out of > state and she asked me if I was up to the visit. I > actually told her that she would have to go > sightseeing with my kids and my enjoymentt would > come from listening to them talk about their day > when they were back at my house sitting on the front > porch. > I am a person who loves to go. My mother used to > say that I would get up off my death bed if someone > suggested going shopping. I hope she is right. > Last year we went to Pennsylvania and New York. > One of my son's drove. (they camped, we stayed in > motels) I kept up fairly well. > This year things are different. We are going to > Tennessee (The Smokies) I am afraid that I will be > staying in the cabin a lot. But I am still going. My > son and his wife tell me that next year we are going > to Alaska. So my hopes are up. I was telling my > Doctor that I am going to retire to the smokies but > I cannot do that until my youngest grandchild gets > into school. That will be another five years. He > said, " do you know how old and infirm you will be in > five years? " I just told him that due to my > cognitive decline I did not know that and he > shouldn't tell me. I have the plans for my house and > everything. Now, I know that I will be on medicare > and I cannot get the healthcare there that I have > here and I really can't go unless all of my children > go along. But I'm not thinking about that. > Somedays I live quite well in that world > Barb J. > tiodaat@... wrote: > In a message dated 7/17/06 1:19:25 AM Pacific > Daylight Time, statpdq@... writes: > > > . I don't visit friends because #1. I forget to > call, #2. I can find nothing to talk about. I can > think of two or three things and then I am stumped. > So, I find my whole world getting smaller and > smaller. > > Barb, > I can so relate. It is such a loss when you find > that the only conversations you have is about what > you're doing to take care of you. > I too am finding that it's harder and harder to > socialize, and as I sit with a friend for lunch--- > and they tell me about the vacation they just took, > or the concerts they went to, or the mountain they > hiked (my husband is going off next week to backpack > the Trinity Mountain Range, and the week after to > end up in the Marble Mountains) and I'll listen to > him tell me the stories, and then have to sit thru > it again when he tells his mom, and so on. > > I was thinking today about a trip that we wanted to > take to Canada, and I know it won't happen, so I > will live vicariously thru someone else's trip. > > I keep telling myself that this is ok. I'm still > alive and kicking. Well, at least I'm still > kicking- but right now it's with a bit of anger. > Guess I'll have to figure that out also-- I am one > who hates to waste my precious energy on feeling > angry. So, when I'm ready, I'll have to try to find > my bootstraps and pull on the boots, dust them off, > and get on with life. > > Today though, I'll let myself be a bit angry. At > least I'm doing something. > > Take care, > Tracie > NS Co-owner/moderator > > > --------------------------------- > Do you Yahoo!? > Everyone is raving about the all-new Yahoo! Mail Beta. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2006 Report Share Posted July 18, 2006 Never stop dreaming Barb...God not doctors have the last word on where we can go, and how long we stay////Connie --- " barb J. " statpdq@...> wrote: > Tracie, > I know exactly what you mean. We recently had a > visit from my niece and her husband from out of > state and she asked me if I was up to the visit. I > actually told her that she would have to go > sightseeing with my kids and my enjoymentt would > come from listening to them talk about their day > when they were back at my house sitting on the front > porch. > I am a person who loves to go. My mother used to > say that I would get up off my death bed if someone > suggested going shopping. I hope she is right. > Last year we went to Pennsylvania and New York. > One of my son's drove. (they camped, we stayed in > motels) I kept up fairly well. > This year things are different. We are going to > Tennessee (The Smokies) I am afraid that I will be > staying in the cabin a lot. But I am still going. My > son and his wife tell me that next year we are going > to Alaska. So my hopes are up. I was telling my > Doctor that I am going to retire to the smokies but > I cannot do that until my youngest grandchild gets > into school. That will be another five years. He > said, " do you know how old and infirm you will be in > five years? " I just told him that due to my > cognitive decline I did not know that and he > shouldn't tell me. I have the plans for my house and > everything. Now, I know that I will be on medicare > and I cannot get the healthcare there that I have > here and I really can't go unless all of my children > go along. But I'm not thinking about that. > Somedays I live quite well in that world > Barb J. > tiodaat@... wrote: > In a message dated 7/17/06 1:19:25 AM Pacific > Daylight Time, statpdq@... writes: > > > . I don't visit friends because #1. I forget to > call, #2. I can find nothing to talk about. I can > think of two or three things and then I am stumped. > So, I find my whole world getting smaller and > smaller. > > Barb, > I can so relate. It is such a loss when you find > that the only conversations you have is about what > you're doing to take care of you. > I too am finding that it's harder and harder to > socialize, and as I sit with a friend for lunch--- > and they tell me about the vacation they just took, > or the concerts they went to, or the mountain they > hiked (my husband is going off next week to backpack > the Trinity Mountain Range, and the week after to > end up in the Marble Mountains) and I'll listen to > him tell me the stories, and then have to sit thru > it again when he tells his mom, and so on. > > I was thinking today about a trip that we wanted to > take to Canada, and I know it won't happen, so I > will live vicariously thru someone else's trip. > > I keep telling myself that this is ok. I'm still > alive and kicking. Well, at least I'm still > kicking- but right now it's with a bit of anger. > Guess I'll have to figure that out also-- I am one > who hates to waste my precious energy on feeling > angry. So, when I'm ready, I'll have to try to find > my bootstraps and pull on the boots, dust them off, > and get on with life. > > Today though, I'll let myself be a bit angry. At > least I'm doing something. > > Take care, > Tracie > NS Co-owner/moderator > > > --------------------------------- > Do you Yahoo!? > Everyone is raving about the all-new Yahoo! Mail Beta. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2006 Report Share Posted July 18, 2006 Hey, I'll hold the cans while you kick them. Everybody has to let it out now and again or we'd all blow up. Connie --- tiodaat@... wrote: > In a message dated 7/17/06 8:51:52 PM Pacific > Daylight Time, > statpdq@... writes: > > > > I was telling my Doctor that I am going to retire > to the smokies but I > > cannot do that until my youngest grandchild gets > into school. That will be > > another five years. He said, " do you know how old > and infirm you will be in five > > years? " I just told him that due to my cognitive > decline I did not know that > > and he shouldn't tell me. > > Barb, > > I've been fighting this disease for 14 yrs now. Six > years ago, the MD's told > me i had 5-7 yrs to live. > Well, the first 5 are gone. So, I'm in year one of > the 7 yrs. It's all > about attitude. (Tonight, my husband would tell you > I have one. .) > I was watching a bit of LIME TV-- and they had Joan > Boryshanko(sp) on and she > did a show on how attitude effects our healing. > I know we can't " think " ourself well. We didn't and > aren't " thinking " > ourself sick. > I've finally have come to the place where the term > " disease' means illness- > that doesn't go away. Instead of the dis-ease that > so many self help books > want us to adopt. > Screw that-- I'm sick, I know I'm sick. I don't > want to be sick, and I don't > want to have to figure out what to do next because I > am sick. > Can I embrace myself in this sickness-- sure, but > why can't someone else > embrace me for awhile. Why do I have to ask my > husband to hold me, to let me cry, > to not go off in how wonderful he feels following > his hour on the treadmill > and 45 mins on the exercise bike. And hey, he's > lost 22 pounds in the last 4 > months and if we all exercised and cut the crap out > of our diets-- we'd be > feeling great too. > Screw it. I have found all the weight he's lost > this last year, and it's > taken residence in my belly. It's 3 > immunosupressants, antidepressants, > anti-seizure meds for neuralgia, diabetic meds and > heart meds --all with the same > stinking side effect. Weight gain. > Screw it. I don't want to play anymore. This game > has lost it's interest, > it's challenge, and I call a truce. I quit. > I think I'll go to the garden and eat worms. > > Thank you for all your support-- I'm just having a > good old fashion pity > party. Maybe by tomorrow, I'll be out of this mood. > Tonight, though, I think > I'll kick a can--far. > > Love ya all, > Tracie > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2006 Report Share Posted July 19, 2006 Connie, AMEN! Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Connie Griffis Sent: Tuesday, July 18, 2006 5:16 PM To: Neurosarcoidosis Subject: Re: sHRINKING WORLD Never stop dreaming Barb...God not doctors have the last word on where we can go, and how long we stay////Connie --- " barb J. " <statpdq (AT) yahoo (DOT) com> wrote: > Tracie, > I know exactly what you mean. We recently had a > visit from my niece and her husband from out of > state and she asked me if I was up to the visit. I > actually told her that she would have to go > sightseeing with my kids and my enjoymentt would > come from listening to them talk about their day > when they were back at my house sitting on the front > porch. > I am a person who loves to go. My mother used to > say that I would get up off my death bed if someone > suggested going shopping. I hope she is right. > Last year we went to Pennsylvania and New York. > One of my son's drove. (they camped, we stayed in > motels) I kept up fairly well. > This year things are different. We are going to > Tennessee (The Smokies) I am afraid that I will be > staying in the cabin a lot. But I am still going. My > son and his wife tell me that next year we are going > to Alaska. So my hopes are up. I was telling my > Doctor that I am going to retire to the smokies but > I cannot do that until my youngest grandchild gets > into school. That will be another five years. He > said, " do you know how old and infirm you will be in > five years? " I just told him that due to my > cognitive decline I did not know that and he > shouldn't tell me. I have the plans for my house and > everything. Now, I know that I will be on medicare > and I cannot get the healthcare there that I have > here and I really can't go unless all of my children > go along. But I'm not thinking about that. > Somedays I live quite well in that world > Barb J. > tiodaat (AT) aol (DOT) com wrote: > In a message dated 7/17/06 1:19:25 AM Pacific > Daylight Time, statpdq (AT) yahoo (DOT) com writes: > > > . I don't visit friends because #1. I forget to > call, #2. I can find nothing to talk about. I can > think of two or three things and then I am stumped. > So, I find my whole world getting smaller and > smaller. > > Barb, > I can so relate. It is such a loss when you find > that the only conversations you have is about what > you're doing to take care of you. > I too am finding that it's harder and harder to > socialize, and as I sit with a friend for lunch--- > and they tell me about the vacation they just took, > or the concerts they went to, or the mountain they > hiked (my husband is going off next week to backpack > the Trinity Mountain Range, and the week after to > end up in the Marble Mountains) and I'll listen to > him tell me the stories, and then have to sit thru > it again when he tells his mom, and so on. > > I was thinking today about a trip that we wanted to > take to Canada, and I know it won't happen, so I > will live vicariously thru someone else's trip. > > I keep telling myself that this is ok. I'm still > alive and kicking. Well, at least I'm still > kicking- but right now it's with a bit of anger. > Guess I'll have to figure that out also-- I am one > who hates to waste my precious energy on feeling > angry. So, when I'm ready, I'll have to try to find > my bootstraps and pull on the boots, dust them off, > and get on with life. > > Today though, I'll let myself be a bit angry. At > least I'm doing something. > > Take care, > Tracie > NS Co-owner/moderator > > > --------------------------------- > Do you Yahoo!? > Everyone is raving about the all-new Yahoo! Mail Beta. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2006 Report Share Posted July 19, 2006 hi when u retire to the smokies can i join u- I love that part of the country- I hope to move back east at some point and plan on living either in the mountians or coast of North Carolina MATT --- tiodaat@... wrote: > In a message dated 7/17/06 8:51:52 PM Pacific > Daylight Time, > statpdq@... writes: > > > > I was telling my Doctor that I am going to retire > to the smokies but I > > cannot do that until my youngest grandchild gets > into school. That will be > > another five years. He said, " do you know how old > and infirm you will be in five > > years? " I just told him that due to my cognitive > decline I did not know that > > and he shouldn't tell me. > > Barb, > > I've been fighting this disease for 14 yrs now. Six > years ago, the MD's told > me i had 5-7 yrs to live. > Well, the first 5 are gone. So, I'm in year one of > the 7 yrs. It's all > about attitude. (Tonight, my husband would tell you > I have one. .) > I was watching a bit of LIME TV-- and they had Joan > Boryshanko(sp) on and she > did a show on how attitude effects our healing. > I know we can't " think " ourself well. We didn't and > aren't " thinking " > ourself sick. > I've finally have come to the place where the term > " disease' means illness- > that doesn't go away. Instead of the dis-ease that > so many self help books > want us to adopt. > Screw that-- I'm sick, I know I'm sick. I don't > want to be sick, and I don't > want to have to figure out what to do next because I > am sick. > Can I embrace myself in this sickness-- sure, but > why can't someone else > embrace me for awhile. Why do I have to ask my > husband to hold me, to let me cry, > to not go off in how wonderful he feels following > his hour on the treadmill > and 45 mins on the exercise bike. And hey, he's > lost 22 pounds in the last 4 > months and if we all exercised and cut the crap out > of our diets-- we'd be > feeling great too. > Screw it. I have found all the weight he's lost > this last year, and it's > taken residence in my belly. It's 3 > immunosupressants, antidepressants, > anti-seizure meds for neuralgia, diabetic meds and > heart meds --all with the same > stinking side effect. Weight gain. > Screw it. I don't want to play anymore. This game > has lost it's interest, > it's challenge, and I call a truce. I quit. > I think I'll go to the garden and eat worms. > > Thank you for all your support-- I'm just having a > good old fashion pity > party. Maybe by tomorrow, I'll be out of this mood. > Tonight, though, I think > I'll kick a can--far. > > Love ya all, > Tracie > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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