Guest guest Posted October 24, 2007 Report Share Posted October 24, 2007 Tracie, Your wisdom is something I can only hope for one day. You are so right. My husband told me the other day, “you know it’s OK to say Ouch”, of course the slow to or never register brain I have, I looked at him very strange, and he said you know very few know how sick you really are, it even took him years to come to terms on that, I’ve been dealing with this 13 years now, and he’s been on board the last 7 years it took him that long to realize it, so I can’t imagine how long it would take someone who doesn’t live with you to really know, and then I don’t think they ever do really know. You all know I lost a good friend to Melanoma about 2 months ago, and every time I visited her, she want to talk about death and dying because she knew that I am not afraid, and she wanted to know how to get there, like you said, if you were to die that would be OK, I think she finally got there at the end. I think it would be harder at 36 with two little ones. Malra From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@... Sent: Wednesday, October 24, 2007 7:39 PM To: Neurosarcoidosis Subject: Re:Cynics Jackie, It isn't so much that I am offended by the cynisym that we all develop from time to time. It is true that there are those that will always choose to " work the system. " Sadly, with chronic illness-- you get to see that and be treated as though you are one of the ones that gets to walk the distance because there aren't enough spots. You go into the MD's office, and they look at you like you must be nuts-- nothing is showing up on tests-- and yet you are sick. Friends can't figure out why you cancel your lunch plans with them-- or you come to lunch, and need desperately to express your fear of the " what if " and " when " .. this disease will take your life-- and what you are really saying is that you don't want to ignore that you see your health deteriorating, and you just want them to know that if you were to die, that would be ok -- that you've made peace with the way things are-- and since they've not done that-- they don't want to hear that you have-- so they stop calling or coming by. Then there are the days that you take a ride with a friend, and you take your placard, and they don't want to park in the spaces available, because they too can't handle that you don't look like you're hurting-- and you have to explain yourself again. And again.... Yeah, it struck a cord-- and this is important for all of us-- because it is a fact that we will all come up against-- hopefully for those of you just newly diagnosed-- you'll have many years before this is an issue. For those of us that have a long history of this disease-- we know the story, and we have had to fight even the ones we love the most- to have them understand that we need to park in the front row, or take along the oxygen so we can get thru the store without total exhaustion, or the first day that you pick up a cane, or find yourself going through the interview for an electric wheelchair, or have to use the powerchair shopping cart. There is a pride of having to surrender-- once again. There is the sadness of having to ask again for help. There is the reality that you will explain these issues to all that you come into contact with-- over and over. I realize that each of the tools we will use should be seen as a gift-- a way to keep some of our mobility and function. I also realize that each of these steps comes with grief-- of another piece of our life lost. Sometimes we need wake-up calls so that we can move forward- and evolve into a more compassionate being-- and that means we have to show others how to not be so cynical. Blessings to us all, Tracie NS Co-owner/moderator See what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2007 Report Share Posted October 24, 2007 Tracie, Your wisdom is something I can only hope for one day. You are so right. My husband told me the other day, “you know it’s OK to say Ouch”, of course the slow to or never register brain I have, I looked at him very strange, and he said you know very few know how sick you really are, it even took him years to come to terms on that, I’ve been dealing with this 13 years now, and he’s been on board the last 7 years it took him that long to realize it, so I can’t imagine how long it would take someone who doesn’t live with you to really know, and then I don’t think they ever do really know. You all know I lost a good friend to Melanoma about 2 months ago, and every time I visited her, she want to talk about death and dying because she knew that I am not afraid, and she wanted to know how to get there, like you said, if you were to die that would be OK, I think she finally got there at the end. I think it would be harder at 36 with two little ones. Malra From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@... Sent: Wednesday, October 24, 2007 7:39 PM To: Neurosarcoidosis Subject: Re:Cynics Jackie, It isn't so much that I am offended by the cynisym that we all develop from time to time. It is true that there are those that will always choose to " work the system. " Sadly, with chronic illness-- you get to see that and be treated as though you are one of the ones that gets to walk the distance because there aren't enough spots. You go into the MD's office, and they look at you like you must be nuts-- nothing is showing up on tests-- and yet you are sick. Friends can't figure out why you cancel your lunch plans with them-- or you come to lunch, and need desperately to express your fear of the " what if " and " when " .. this disease will take your life-- and what you are really saying is that you don't want to ignore that you see your health deteriorating, and you just want them to know that if you were to die, that would be ok -- that you've made peace with the way things are-- and since they've not done that-- they don't want to hear that you have-- so they stop calling or coming by. Then there are the days that you take a ride with a friend, and you take your placard, and they don't want to park in the spaces available, because they too can't handle that you don't look like you're hurting-- and you have to explain yourself again. And again.... Yeah, it struck a cord-- and this is important for all of us-- because it is a fact that we will all come up against-- hopefully for those of you just newly diagnosed-- you'll have many years before this is an issue. For those of us that have a long history of this disease-- we know the story, and we have had to fight even the ones we love the most- to have them understand that we need to park in the front row, or take along the oxygen so we can get thru the store without total exhaustion, or the first day that you pick up a cane, or find yourself going through the interview for an electric wheelchair, or have to use the powerchair shopping cart. There is a pride of having to surrender-- once again. There is the sadness of having to ask again for help. There is the reality that you will explain these issues to all that you come into contact with-- over and over. I realize that each of the tools we will use should be seen as a gift-- a way to keep some of our mobility and function. I also realize that each of these steps comes with grief-- of another piece of our life lost. Sometimes we need wake-up calls so that we can move forward- and evolve into a more compassionate being-- and that means we have to show others how to not be so cynical. Blessings to us all, Tracie NS Co-owner/moderator See what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2007 Report Share Posted October 25, 2007 Tracie,As usual, well written. This hit home big time. Blessings,Beckytiodaat@... wrote: Jackie, It isn't so much that I am offended by the cynisym that we all develop from time to time. It is true that there are those that will always choose to "work the system." Sadly, with chronic illness-- you get to see that and be treated as though you are one of the ones that gets to walk the distance because there aren't enough spots. You go into the MD's office, and they look at you like you must be nuts-- nothing is showing up on tests-- and yet you are sick. Friends can't figure out why you cancel your lunch plans with them-- or you come to lunch, and need desperately to express your fear of the "what if" and "when" .. this disease will take your life-- and what you are really saying is that you don't want to ignore that you see your health deteriorating, and you just want them to know that if you were to die, that would be ok -- that you've made peace with the way things are-- and since they've not done that-- they don't want to hear that you have-- so they stop calling or coming by. Then there are the days that you take a ride with a friend, and you take your placard, and they don't want to park in the spaces available, because they too can't handle that you don't look like you're hurting-- and you have to explain yourself again. And again.... Yeah, it struck a cord-- and this is important for all of us-- because it is a fact that we will all come up against-- hopefully for those of you just newly diagnosed-- you'll have many years before this is an issue. For those of us that have a long history of this disease-- we know the story, and we have had to fight even the ones we love the most- to have them understand that we need to park in the front row, or take along the oxygen so we can get thru the store without total exhaustion, or the first day that you pick up a cane, or find yourself going through the interview for an electric wheelchair, or have to use the powerchair shopping cart. There is a pride of having to surrender-- once again. There is the sadness of having to ask again for help. There is the reality that you will explain these issues to all that you come into contact with-- over and over. I realize that each of the tools we will use should be seen as a gift-- a way to keep some of our mobility and function. I also realize that each of these steps comes with grief-- of another piece of our life lost. Sometimes we need wake-up calls so that we can move forward- and evolve into a more compassionate being-- and that means we have to show others how to not be so cynical. Blessings to us all, Tracie NS Co-owner/moderator See what's new at AOL.com and Make AOL Your Homepage. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2007 Report Share Posted October 25, 2007 Tracie,As usual, well written. This hit home big time. Blessings,Beckytiodaat@... wrote: Jackie, It isn't so much that I am offended by the cynisym that we all develop from time to time. It is true that there are those that will always choose to "work the system." Sadly, with chronic illness-- you get to see that and be treated as though you are one of the ones that gets to walk the distance because there aren't enough spots. You go into the MD's office, and they look at you like you must be nuts-- nothing is showing up on tests-- and yet you are sick. Friends can't figure out why you cancel your lunch plans with them-- or you come to lunch, and need desperately to express your fear of the "what if" and "when" .. this disease will take your life-- and what you are really saying is that you don't want to ignore that you see your health deteriorating, and you just want them to know that if you were to die, that would be ok -- that you've made peace with the way things are-- and since they've not done that-- they don't want to hear that you have-- so they stop calling or coming by. Then there are the days that you take a ride with a friend, and you take your placard, and they don't want to park in the spaces available, because they too can't handle that you don't look like you're hurting-- and you have to explain yourself again. And again.... Yeah, it struck a cord-- and this is important for all of us-- because it is a fact that we will all come up against-- hopefully for those of you just newly diagnosed-- you'll have many years before this is an issue. For those of us that have a long history of this disease-- we know the story, and we have had to fight even the ones we love the most- to have them understand that we need to park in the front row, or take along the oxygen so we can get thru the store without total exhaustion, or the first day that you pick up a cane, or find yourself going through the interview for an electric wheelchair, or have to use the powerchair shopping cart. There is a pride of having to surrender-- once again. There is the sadness of having to ask again for help. There is the reality that you will explain these issues to all that you come into contact with-- over and over. I realize that each of the tools we will use should be seen as a gift-- a way to keep some of our mobility and function. I also realize that each of these steps comes with grief-- of another piece of our life lost. Sometimes we need wake-up calls so that we can move forward- and evolve into a more compassionate being-- and that means we have to show others how to not be so cynical. Blessings to us all, Tracie NS Co-owner/moderator See what's new at AOL.com and Make AOL Your Homepage. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2007 Report Share Posted October 25, 2007 Tracie, from an "oldie" that was a great statement that is SOOO true, Hugs, Debbietiodaat@... wrote: Jackie, It isn't so much that I am offended by the cynisym that we all develop from time to time. It is true that there are those that will always choose to "work the system." Sadly, with chronic illness-- you get to see that and be treated as though you are one of the ones that gets to walk the distance because there aren't enough spots. You go into the MD's office, and they look at you like you must be nuts-- nothing is showing up on tests-- and yet you are sick. Friends can't figure out why you cancel your lunch plans with them-- or you come to lunch, and need desperately to express your fear of the "what if" and "when" .. this disease will take your life-- and what you are really saying is that you don't want to ignore that you see your health deteriorating, and you just want them to know that if you were to die, that would be ok -- that you've made peace with the way things are-- and since they've not done that-- they don't want to hear that you have-- so they stop calling or coming by. Then there are the days that you take a ride with a friend, and you take your placard, and they don't want to park in the spaces available, because they too can't handle that you don't look like you're hurting-- and you have to explain yourself again. And again.... Yeah, it struck a cord-- and this is important for all of us-- because it is a fact that we will all come up against-- hopefully for those of you just newly diagnosed-- you'll have many years before this is an issue. For those of us that have a long history of this disease-- we know the story, and we have had to fight even the ones we love the most- to have them understand that we need to park in the front row, or take along the oxygen so we can get thru the store without total exhaustion, or the first day that you pick up a cane, or find yourself going through the interview for an electric wheelchair, or have to use the powerchair shopping cart. There is a pride of having to surrender-- once again. There is the sadness of having to ask again for help. There is the reality that you will explain these issues to all that you come into contact with-- over and over. I realize that each of the tools we will use should be seen as a gift-- a way to keep some of our mobility and function. I also realize that each of these steps comes with grief-- of another piece of our life lost. Sometimes we need wake-up calls so that we can move forward- and evolve into a more compassionate being-- and that means we have to show others how to not be so cynical. Blessings to us all, Tracie NS Co-owner/moderator See what's new at AOL.com and Make AOL Your Homepage. Debbie T.Co-Moderator __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2007 Report Share Posted October 25, 2007 Tracie, from an "oldie" that was a great statement that is SOOO true, Hugs, Debbietiodaat@... wrote: Jackie, It isn't so much that I am offended by the cynisym that we all develop from time to time. It is true that there are those that will always choose to "work the system." Sadly, with chronic illness-- you get to see that and be treated as though you are one of the ones that gets to walk the distance because there aren't enough spots. You go into the MD's office, and they look at you like you must be nuts-- nothing is showing up on tests-- and yet you are sick. Friends can't figure out why you cancel your lunch plans with them-- or you come to lunch, and need desperately to express your fear of the "what if" and "when" .. this disease will take your life-- and what you are really saying is that you don't want to ignore that you see your health deteriorating, and you just want them to know that if you were to die, that would be ok -- that you've made peace with the way things are-- and since they've not done that-- they don't want to hear that you have-- so they stop calling or coming by. Then there are the days that you take a ride with a friend, and you take your placard, and they don't want to park in the spaces available, because they too can't handle that you don't look like you're hurting-- and you have to explain yourself again. And again.... Yeah, it struck a cord-- and this is important for all of us-- because it is a fact that we will all come up against-- hopefully for those of you just newly diagnosed-- you'll have many years before this is an issue. For those of us that have a long history of this disease-- we know the story, and we have had to fight even the ones we love the most- to have them understand that we need to park in the front row, or take along the oxygen so we can get thru the store without total exhaustion, or the first day that you pick up a cane, or find yourself going through the interview for an electric wheelchair, or have to use the powerchair shopping cart. There is a pride of having to surrender-- once again. There is the sadness of having to ask again for help. There is the reality that you will explain these issues to all that you come into contact with-- over and over. I realize that each of the tools we will use should be seen as a gift-- a way to keep some of our mobility and function. I also realize that each of these steps comes with grief-- of another piece of our life lost. Sometimes we need wake-up calls so that we can move forward- and evolve into a more compassionate being-- and that means we have to show others how to not be so cynical. Blessings to us all, Tracie NS Co-owner/moderator See what's new at AOL.com and Make AOL Your Homepage. Debbie T.Co-Moderator __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2007 Report Share Posted October 25, 2007 Tracie, once again you have expressed something so well, concise but thorough. Beautifully written! Thank you. Rose Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 Peek-a-boo FREE Tricks Treats for You! Get 'em! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2007 Report Share Posted October 25, 2007 Tracie, once again you have expressed something so well, concise but thorough. Beautifully written! Thank you. Rose Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 Peek-a-boo FREE Tricks Treats for You! Get 'em! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2007 Report Share Posted October 28, 2007 Tracie well said, how are you doing? Are you having trouble where you live with all the smoke from the fires? We have hazy skies and smells like smoke all the way out here in Colorado, I thought maybe I was just nuts, and mentioned it to my husband who agreed with me. Take care, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Debbie Sent: Thursday, October 25, 2007 5:33 AM To: Neurosarcoidosis Subject: Re: Re:Cynics Tracie, from an " oldie " that was a great statement that is SOOO true, Hugs, Debbie tiodaat (AT) aol (DOT) com wrote: Jackie, It isn't so much that I am offended by the cynisym that we all develop from time to time. It is true that there are those that will always choose to " work the system. " Sadly, with chronic illness-- you get to see that and be treated as though you are one of the ones that gets to walk the distance because there aren't enough spots. You go into the MD's office, and they look at you like you must be nuts-- nothing is showing up on tests-- and yet you are sick. Friends can't figure out why you cancel your lunch plans with them-- or you come to lunch, and need desperately to express your fear of the " what if " and " when " .. this disease will take your life-- and what you are really saying is that you don't want to ignore that you see your health deteriorating, and you just want them to know that if you were to die, that would be ok -- that you've made peace with the way things are-- and since they've not done that-- they don't want to hear that you have-- so they stop calling or coming by. Then there are the days that you take a ride with a friend, and you take your placard, and they don't want to park in the spaces available, because they too can't handle that you don't look like you're hurting-- and you have to explain yourself again. And again.... Yeah, it struck a cord-- and this is important for all of us-- because it is a fact that we will all come up against-- hopefully for those of you just newly diagnosed-- you'll have many years before this is an issue. For those of us that have a long history of this disease-- we know the story, and we have had to fight even the ones we love the most- to have them understand that we need to park in the front row, or take along the oxygen so we can get thru the store without total exhaustion, or the first day that you pick up a cane, or find yourself going through the interview for an electric wheelchair, or have to use the powerchair shopping cart. There is a pride of having to surrender-- once again. There is the sadness of having to ask again for help. There is the reality that you will explain these issues to all that you come into contact with-- over and over. I realize that each of the tools we will use should be seen as a gift-- a way to keep some of our mobility and function. I also realize that each of these steps comes with grief-- of another piece of our life lost. Sometimes we need wake-up calls so that we can move forward- and evolve into a more compassionate being-- and that means we have to show others how to not be so cynical. Blessings to us all, Tracie NS Co-owner/moderator See what's new at AOL.com and Make AOL Your Homepage. Debbie T. Co-Moderator __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2007 Report Share Posted October 28, 2007 Tracie well said, how are you doing? Are you having trouble where you live with all the smoke from the fires? We have hazy skies and smells like smoke all the way out here in Colorado, I thought maybe I was just nuts, and mentioned it to my husband who agreed with me. Take care, Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Debbie Sent: Thursday, October 25, 2007 5:33 AM To: Neurosarcoidosis Subject: Re: Re:Cynics Tracie, from an " oldie " that was a great statement that is SOOO true, Hugs, Debbie tiodaat (AT) aol (DOT) com wrote: Jackie, It isn't so much that I am offended by the cynisym that we all develop from time to time. It is true that there are those that will always choose to " work the system. " Sadly, with chronic illness-- you get to see that and be treated as though you are one of the ones that gets to walk the distance because there aren't enough spots. You go into the MD's office, and they look at you like you must be nuts-- nothing is showing up on tests-- and yet you are sick. Friends can't figure out why you cancel your lunch plans with them-- or you come to lunch, and need desperately to express your fear of the " what if " and " when " .. this disease will take your life-- and what you are really saying is that you don't want to ignore that you see your health deteriorating, and you just want them to know that if you were to die, that would be ok -- that you've made peace with the way things are-- and since they've not done that-- they don't want to hear that you have-- so they stop calling or coming by. Then there are the days that you take a ride with a friend, and you take your placard, and they don't want to park in the spaces available, because they too can't handle that you don't look like you're hurting-- and you have to explain yourself again. And again.... Yeah, it struck a cord-- and this is important for all of us-- because it is a fact that we will all come up against-- hopefully for those of you just newly diagnosed-- you'll have many years before this is an issue. For those of us that have a long history of this disease-- we know the story, and we have had to fight even the ones we love the most- to have them understand that we need to park in the front row, or take along the oxygen so we can get thru the store without total exhaustion, or the first day that you pick up a cane, or find yourself going through the interview for an electric wheelchair, or have to use the powerchair shopping cart. There is a pride of having to surrender-- once again. There is the sadness of having to ask again for help. There is the reality that you will explain these issues to all that you come into contact with-- over and over. I realize that each of the tools we will use should be seen as a gift-- a way to keep some of our mobility and function. I also realize that each of these steps comes with grief-- of another piece of our life lost. Sometimes we need wake-up calls so that we can move forward- and evolve into a more compassionate being-- and that means we have to show others how to not be so cynical. Blessings to us all, Tracie NS Co-owner/moderator See what's new at AOL.com and Make AOL Your Homepage. Debbie T. Co-Moderator __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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