Re: Family In Denial About Illness

[Guest guest]

, I have to agree with you that this is a very painful part of being ill with sarc. It is also a very lonely part, too. I quess I just have to give most people the benefit of the doubt that they just don't know what to do, or they don't realize how really bad it really is, or that some people have a fear of sick people. I am constantly reassuring people that this is not 'catching' and that I really spend too much time alone. But they still don't get it. I have to keep reaching out until I get the help I need cuz I truly can not do this alone. Alot of my 'outside the immediate family' relatives still don't understand why I'm still sick?!...? or why don't the doctors give me something to make it all better or they hint that I must be doing something wrong or I'd be doing better. My husband went for years thinking I'll get better any day. Now he

realizes I won't and I have had to talk him out of that funk cuz we can still have a life...just a bit more low-keyed. I believe God has a purpose in all things so I just have to continue to 'listen' and follow Him day by day and trust I'm doing o.k. The hardest thing for me is to give myself a break and not push so hard(type A personality). I love 'doing' and it kills me to sit still. Thanks for writing your post and reminding me to keep working at those difficult family/friend relationships. hugs S." J. Blanchett" wrote: This was one of the most painful parts of having this disease, not to mention the loneliness.My wife, children and older brother were all in denial and could not face the fact of my illness. My wife

was distant, ANGRY, cold and without compassion for a long time. I can recall one visit to my neurosurgeon that she went with me to discuss the possbility of brain surgery for a biopsy. And she said to my neurosugeon as he was reviewing my MRI results with me, "Ain't nothing wrong with him. Its all in his head."My neurosurgeon looked directly in her eyes and said very firmly, "something is wrong with him and it is in his head." My wife suddenly got quiet and did not say anything else during the meetings. But this still did not change her attitude. It was like she was angry with me for getting ill and changing/destroying our way of life as we had it.My daughter was and still is in denial to a degree. She wrote me a long letter stating that if she just did not think about it, or avoid it and me too that it would go away and just disappear. Then she came to realize that that was not

happening. She has concerns whether or not she will get the disease and this scars her very much. She blocks things out that she has difficulty dealing with. Yes, she is the Queen of Denial. But she is still "Daddy's little Girl" and I love her dearly. Although her distance has hurt me a great deal, I keep praying and telling myself that she is just a kid and does not know how to deal with this situation. Afterall, I have always been her "knight in shinning armour" that fixes everything and make everything right. I was her Hero! And to think that my her Dad has literally changed overnight is difficult for her to deal with.My stepson and stepdaughter do not know how to deal with it either. They too run from it. They do not know how to express their feelings towards me. The keep silent and distant and just discuss it with their Mom when the subject comes up. This has

driven a huge wedge between everyone in the family. It truly has been very difficult and painful for everyone involved, even our little grandson can sense something is wrong with PaPa, Nana and the whole family and he is only 3 years old.My brother is doing much better in dealing with it. He is helpful, emotional and giving of self, time, talents and treasures in everyway. He is doing much to demonstrate and sacrifice for me to be better and more comfortable. He is in the process of trying to purchase a van for me and he just helped my pay for my motorized wheelchair. So he is much improved, not to mention he just purchased my daughter a round trip airplane ticket to come and see me this Friday for a week long visit. He has been in regular contact with my daughter 3-4 times a week to help her and himself adjust to my situation and being in a wheel chair now. My daughter said to him, "I don't want

to see my Dad like that (while crying)! I want to remember my Dad the way he was." Well both of them started crying and they eventually worked through it.In summary, my wife has accepted it now. She is not as distant and cold as she used to be. My daughter is maturing and trying to come to grips with it and my step children are still in a daze about it all. My brother is better but much more emotional and my Mom is the ROCK of it all besides my prayers and faith.Family is so important. I would be lost without the support of mine. My nieces, nephews, brothers, sister, aunts uncles have all been great in helping me in one way or another. And especially my sister in law, she has been my help aide everyday for the past 5-6 months, 5 days a week, 24 hours a day. She helps me get washed, cleaned, feeds me, and wait on me hand and foot. Truly, there is no one better than

Maxine. Yes, that is her name and she deserves mentioning. Maxine.BUT MY MOM IS STILL THE GREATEST! SHE IS LIKE THE DURACEL RABBIT!Did I mention my Mom took early retirement a few months ago so she could be home with me and help take care of me. Just last week she purchased me a recliner that lifts so I don't have to sit in the wheel chair all the time and get a soar tail bone! Oooooh that hurts sooooo much! Thanks Mom!Well, enough of that. I just wanted to share with you the good, the bad and the ugly. But in spite of it all, I love each and every person I mentioned even the friends that don't call or come by anymore. They too have difficulty seeing me and dealing with the situation. They feel awkward, hurt, and don't know what to say. So, if they stay away then they don't have to deal with it. My daughter taught me this a few paraqraphs back.

Remember?Just embrace you faith. And DO NOT ALLOW YOUR EMOTIONS TO KEEP YOU TRAPPED AND A HOSTAGE!!! THIS IS THE WORST THING YOU CAN DO!!! WHEN YOU START FEELING SORRY FOR YOURSELF AND CRYING FULL OF SELF-PITY THAT IS THE TIME TO STAND UP AND TELL THE DEVIL TO GO TO HELL!!!Then stop crying and feeling sorry for yourself. Think of the future that contains something positive. BUT, DO NOT DWELL ON THE PAST, BECAUSE THE IS ANOTHER ONE OF THE DEVIL'S TRAPS, DWELLING ON HOW THINGS USE TO BE!!! SO DON'T GO THEIR EITHER!!!!I love you! Truly I do.Ronnie B.aka The Love Doctor

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[Guest guest]

Ronnie

I know how it is and I feel for your loss of understanding family. My husband of nearly 28 years has totally abandoned me emotionally. He has been having an affair and soon we'll be heading for divorce. I have prayed ove this alot and have come to peace with it although I am Irish Catholic and divorce is not part of our vocabulary. I need to live my life and enjoy what ever quality of life I have left. I am still working, nearly full time, I run my house and have 3 older kids. I quilt and garden, cook and bake, make my own jam, etc. This will be HIS loss!!!

But, that being said, it hurts to know that something that you have absolutely no control over cost us something dear. Love should be unconditional. I saw an interesting speaker the other night when my youngest son was inducted into the National Honor Society, She was telling these kids to NOT be perfect and she took out a 20.00 dollar bill and asked one kid what it was worth. $20.00, he told her. Then, she crumbled it up into a ball, smooshed it, flattened it and then straightened it out as best she could and then asked him, "what's it worth now?" $20.00 dollars, he said. Her point is that even though we get wrinkled and beaten up some by life and illness, we are still the same, worth the same!!!!

Bpmmie Re: Family In Denial About Illness

You are a blessing Mr. Blancett. I feel truly blessed to have been allowed to know you///Connie" J. Blanchett" wrote: This was one of the most painful parts of having this disease, not to mention the loneliness.My wife, children and older brother were all in denial and could not face the fact of my illness. My wife was distant, ANGRY, cold and without compassion for a long time. I can recall one visit to my neurosurgeon that she went with me to discuss the possbility of brain surgery for a biopsy. And she said to my neurosugeon as he was reviewing my MRI results with me, "Ain't nothing wrong with him. Its all in his head."My neurosurgeon looked directly in her eyes and said very firmly, "something is wrong with him and it is in his head." My wife suddenly got quiet and did not say anything else during the meetings. But this still did not change her attitude. It was like she was angry with me for getting ill and changing/destroying our way of life as we had it.My daughter was and still is in denial to a degree. She wrote me a long letter stating that if she just did not think about it, or avoid it and me too that it would go away and just disappear. Then she came to realize that that was not happening. She has concerns whether or not she will get the disease and this scars her very much. She blocks things out that she has difficulty dealing with. Yes, she is the Queen of Denial. But she is still "Daddy's little Girl" and I love her dearly. Although her distance has hurt me a great deal, I keep praying and telling myself that she is just a kid and does not know how to deal with this situation. Afterall, I have always been her "knight in shinning armour" that fixes everything and make everything right. I was her Hero! And to think that my her Dad has literally changed overnight is difficult for her to deal with.My stepson and stepdaughter do not know how to deal with it either. They too run from it. They do not know how to express their feelings towards me. The keep silent and distant and just discuss it with their Mom when the subject comes up. This has driven a huge wedge between everyone in the family. It truly has been very difficult and painful for everyone involved, even our little grandson can sense something is wrong with PaPa, Nana and the whole family and he is only 3 years old.My brother is doing much better in dealing with it. He is helpful, emotional and giving of self, time, talents and treasures in everyway. He is doing much to demonstrate and sacrifice for me to be better and more comfortable. He is in the process of trying to purchase a van for me and he just helped my pay for my motorized wheelchair. So he is much improved, not to mention he just purchased my daughter a round trip airplane ticket to come and see me this Friday for a week long visit. He has been in regular contact with my daughter 3-4 times a week to help her and himself adjust to my situation and being in a wheel chair now. My daughter said to him, "I don't want to see my Dad like that (while crying)! I want to remember my Dad the way he was." Well both of them started crying and they eventually worked through it.In summary, my wife has accepted it now. She is not as distant and cold as she used to be. My daughter is maturing and trying to come to grips with it and my step children are still in a daze about it all. My brother is better but much more emotional and my Mom is the ROCK of it all besides my prayers and faith.Family is so important. I would be lost without the support of mine. My nieces, nephews, brothers, sister, aunts uncles have all been great in helping me in one way or another. And especially my sister in law, she has been my help aide everyday for the past 5-6 months, 5 days a week, 24 hours a day. She helps me get washed, cleaned, feeds me, and wait on me hand and foot. Truly, there is no one better than Maxine. Yes, that is her name and she deserves mentioning. Maxine.BUT MY MOM IS STILL THE GREATEST! SHE IS LIKE THE DURACEL RABBIT!Did I mention my Mom took early retirement a few months ago so she could be home with me and help take care of me. Just last week she purchased me a recliner that lifts so I don't have to sit in the wheel chair all the time and get a soar tail bone! Oooooh that hurts sooooo much! Thanks Mom!Well, enough of that. I just wanted to share with you the good, the bad and the ugly. But in spite of it all, I love each and every person I mentioned even the friends that don't call or come by anymore. They too have difficulty seeing me and dealing with the situation. They feel awkward, hurt, and don't know what to say. So, if they stay away then they don't have to deal with it. My daughter taught me this a few paraqraphs back. Remember?Just embrace you faith. And DO NOT ALLOW YOUR EMOTIONS TO KEEP YOU TRAPPED AND A HOSTAGE!!! THIS IS THE WORST THING YOU CAN DO!!! WHEN YOU START FEELING SORRY FOR YOURSELF AND CRYING FULL OF SELF-PITY THAT IS THE TIME TO STAND UP AND TELL THE DEVIL TO GO TO HELL!!!Then stop crying and feeling sorry for yourself. Think of the future that contains something positive. BUT, DO NOT DWELL ON THE PAST, BECAUSE THE IS ANOTHER ONE OF THE DEVIL'S TRAPS, DWELLING ON HOW THINGS USE TO BE!!! SO DON'T GO THEIR EITHER!!!!I love you! Truly I do.Ronnie B.aka The Love Doctor

Love cheap thrills? Enjoy PC-to-Phone calls to 30+ countries for just 2¢/min with Yahoo! Messenger with Voice. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Ronnie

I know how it is and I feel for your loss of understanding family. My husband of nearly 28 years has totally abandoned me emotionally. He has been having an affair and soon we'll be heading for divorce. I have prayed ove this alot and have come to peace with it although I am Irish Catholic and divorce is not part of our vocabulary. I need to live my life and enjoy what ever quality of life I have left. I am still working, nearly full time, I run my house and have 3 older kids. I quilt and garden, cook and bake, make my own jam, etc. This will be HIS loss!!!

But, that being said, it hurts to know that something that you have absolutely no control over cost us something dear. Love should be unconditional. I saw an interesting speaker the other night when my youngest son was inducted into the National Honor Society, She was telling these kids to NOT be perfect and she took out a 20.00 dollar bill and asked one kid what it was worth. $20.00, he told her. Then, she crumbled it up into a ball, smooshed it, flattened it and then straightened it out as best she could and then asked him, "what's it worth now?" $20.00 dollars, he said. Her point is that even though we get wrinkled and beaten up some by life and illness, we are still the same, worth the same!!!!

Bpmmie Re: Family In Denial About Illness

You are a blessing Mr. Blancett. I feel truly blessed to have been allowed to know you///Connie" J. Blanchett" wrote: This was one of the most painful parts of having this disease, not to mention the loneliness.My wife, children and older brother were all in denial and could not face the fact of my illness. My wife was distant, ANGRY, cold and without compassion for a long time. I can recall one visit to my neurosurgeon that she went with me to discuss the possbility of brain surgery for a biopsy. And she said to my neurosugeon as he was reviewing my MRI results with me, "Ain't nothing wrong with him. Its all in his head."My neurosurgeon looked directly in her eyes and said very firmly, "something is wrong with him and it is in his head." My wife suddenly got quiet and did not say anything else during the meetings. But this still did not change her attitude. It was like she was angry with me for getting ill and changing/destroying our way of life as we had it.My daughter was and still is in denial to a degree. She wrote me a long letter stating that if she just did not think about it, or avoid it and me too that it would go away and just disappear. Then she came to realize that that was not happening. She has concerns whether or not she will get the disease and this scars her very much. She blocks things out that she has difficulty dealing with. Yes, she is the Queen of Denial. But she is still "Daddy's little Girl" and I love her dearly. Although her distance has hurt me a great deal, I keep praying and telling myself that she is just a kid and does not know how to deal with this situation. Afterall, I have always been her "knight in shinning armour" that fixes everything and make everything right. I was her Hero! And to think that my her Dad has literally changed overnight is difficult for her to deal with.My stepson and stepdaughter do not know how to deal with it either. They too run from it. They do not know how to express their feelings towards me. The keep silent and distant and just discuss it with their Mom when the subject comes up. This has driven a huge wedge between everyone in the family. It truly has been very difficult and painful for everyone involved, even our little grandson can sense something is wrong with PaPa, Nana and the whole family and he is only 3 years old.My brother is doing much better in dealing with it. He is helpful, emotional and giving of self, time, talents and treasures in everyway. He is doing much to demonstrate and sacrifice for me to be better and more comfortable. He is in the process of trying to purchase a van for me and he just helped my pay for my motorized wheelchair. So he is much improved, not to mention he just purchased my daughter a round trip airplane ticket to come and see me this Friday for a week long visit. He has been in regular contact with my daughter 3-4 times a week to help her and himself adjust to my situation and being in a wheel chair now. My daughter said to him, "I don't want to see my Dad like that (while crying)! I want to remember my Dad the way he was." Well both of them started crying and they eventually worked through it.In summary, my wife has accepted it now. She is not as distant and cold as she used to be. My daughter is maturing and trying to come to grips with it and my step children are still in a daze about it all. My brother is better but much more emotional and my Mom is the ROCK of it all besides my prayers and faith.Family is so important. I would be lost without the support of mine. My nieces, nephews, brothers, sister, aunts uncles have all been great in helping me in one way or another. And especially my sister in law, she has been my help aide everyday for the past 5-6 months, 5 days a week, 24 hours a day. She helps me get washed, cleaned, feeds me, and wait on me hand and foot. Truly, there is no one better than Maxine. Yes, that is her name and she deserves mentioning. Maxine.BUT MY MOM IS STILL THE GREATEST! SHE IS LIKE THE DURACEL RABBIT!Did I mention my Mom took early retirement a few months ago so she could be home with me and help take care of me. Just last week she purchased me a recliner that lifts so I don't have to sit in the wheel chair all the time and get a soar tail bone! Oooooh that hurts sooooo much! Thanks Mom!Well, enough of that. I just wanted to share with you the good, the bad and the ugly. But in spite of it all, I love each and every person I mentioned even the friends that don't call or come by anymore. They too have difficulty seeing me and dealing with the situation. They feel awkward, hurt, and don't know what to say. So, if they stay away then they don't have to deal with it. My daughter taught me this a few paraqraphs back. Remember?Just embrace you faith. And DO NOT ALLOW YOUR EMOTIONS TO KEEP YOU TRAPPED AND A HOSTAGE!!! THIS IS THE WORST THING YOU CAN DO!!! WHEN YOU START FEELING SORRY FOR YOURSELF AND CRYING FULL OF SELF-PITY THAT IS THE TIME TO STAND UP AND TELL THE DEVIL TO GO TO HELL!!!Then stop crying and feeling sorry for yourself. Think of the future that contains something positive. BUT, DO NOT DWELL ON THE PAST, BECAUSE THE IS ANOTHER ONE OF THE DEVIL'S TRAPS, DWELLING ON HOW THINGS USE TO BE!!! SO DON'T GO THEIR EITHER!!!!I love you! Truly I do.Ronnie B.aka The Love Doctor

Love cheap thrills? Enjoy PC-to-Phone calls to 30+ countries for just 2¢/min with Yahoo! Messenger with Voice. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Ronnie

I know how it is and I feel for your loss of understanding family. My husband of nearly 28 years has totally abandoned me emotionally. He has been having an affair and soon we'll be heading for divorce. I have prayed ove this alot and have come to peace with it although I am Irish Catholic and divorce is not part of our vocabulary. I need to live my life and enjoy what ever quality of life I have left. I am still working, nearly full time, I run my house and have 3 older kids. I quilt and garden, cook and bake, make my own jam, etc. This will be HIS loss!!!

But, that being said, it hurts to know that something that you have absolutely no control over cost us something dear. Love should be unconditional. I saw an interesting speaker the other night when my youngest son was inducted into the National Honor Society, She was telling these kids to NOT be perfect and she took out a 20.00 dollar bill and asked one kid what it was worth. $20.00, he told her. Then, she crumbled it up into a ball, smooshed it, flattened it and then straightened it out as best she could and then asked him, "what's it worth now?" $20.00 dollars, he said. Her point is that even though we get wrinkled and beaten up some by life and illness, we are still the same, worth the same!!!!

Bpmmie Re: Family In Denial About Illness

You are a blessing Mr. Blancett. I feel truly blessed to have been allowed to know you///Connie" J. Blanchett" wrote: This was one of the most painful parts of having this disease, not to mention the loneliness.My wife, children and older brother were all in denial and could not face the fact of my illness. My wife was distant, ANGRY, cold and without compassion for a long time. I can recall one visit to my neurosurgeon that she went with me to discuss the possbility of brain surgery for a biopsy. And she said to my neurosugeon as he was reviewing my MRI results with me, "Ain't nothing wrong with him. Its all in his head."My neurosurgeon looked directly in her eyes and said very firmly, "something is wrong with him and it is in his head." My wife suddenly got quiet and did not say anything else during the meetings. But this still did not change her attitude. It was like she was angry with me for getting ill and changing/destroying our way of life as we had it.My daughter was and still is in denial to a degree. She wrote me a long letter stating that if she just did not think about it, or avoid it and me too that it would go away and just disappear. Then she came to realize that that was not happening. She has concerns whether or not she will get the disease and this scars her very much. She blocks things out that she has difficulty dealing with. Yes, she is the Queen of Denial. But she is still "Daddy's little Girl" and I love her dearly. Although her distance has hurt me a great deal, I keep praying and telling myself that she is just a kid and does not know how to deal with this situation. Afterall, I have always been her "knight in shinning armour" that fixes everything and make everything right. I was her Hero! And to think that my her Dad has literally changed overnight is difficult for her to deal with.My stepson and stepdaughter do not know how to deal with it either. They too run from it. They do not know how to express their feelings towards me. The keep silent and distant and just discuss it with their Mom when the subject comes up. This has driven a huge wedge between everyone in the family. It truly has been very difficult and painful for everyone involved, even our little grandson can sense something is wrong with PaPa, Nana and the whole family and he is only 3 years old.My brother is doing much better in dealing with it. He is helpful, emotional and giving of self, time, talents and treasures in everyway. He is doing much to demonstrate and sacrifice for me to be better and more comfortable. He is in the process of trying to purchase a van for me and he just helped my pay for my motorized wheelchair. So he is much improved, not to mention he just purchased my daughter a round trip airplane ticket to come and see me this Friday for a week long visit. He has been in regular contact with my daughter 3-4 times a week to help her and himself adjust to my situation and being in a wheel chair now. My daughter said to him, "I don't want to see my Dad like that (while crying)! I want to remember my Dad the way he was." Well both of them started crying and they eventually worked through it.In summary, my wife has accepted it now. She is not as distant and cold as she used to be. My daughter is maturing and trying to come to grips with it and my step children are still in a daze about it all. My brother is better but much more emotional and my Mom is the ROCK of it all besides my prayers and faith.Family is so important. I would be lost without the support of mine. My nieces, nephews, brothers, sister, aunts uncles have all been great in helping me in one way or another. And especially my sister in law, she has been my help aide everyday for the past 5-6 months, 5 days a week, 24 hours a day. She helps me get washed, cleaned, feeds me, and wait on me hand and foot. Truly, there is no one better than Maxine. Yes, that is her name and she deserves mentioning. Maxine.BUT MY MOM IS STILL THE GREATEST! SHE IS LIKE THE DURACEL RABBIT!Did I mention my Mom took early retirement a few months ago so she could be home with me and help take care of me. Just last week she purchased me a recliner that lifts so I don't have to sit in the wheel chair all the time and get a soar tail bone! Oooooh that hurts sooooo much! Thanks Mom!Well, enough of that. I just wanted to share with you the good, the bad and the ugly. But in spite of it all, I love each and every person I mentioned even the friends that don't call or come by anymore. They too have difficulty seeing me and dealing with the situation. They feel awkward, hurt, and don't know what to say. So, if they stay away then they don't have to deal with it. My daughter taught me this a few paraqraphs back. Remember?Just embrace you faith. And DO NOT ALLOW YOUR EMOTIONS TO KEEP YOU TRAPPED AND A HOSTAGE!!! THIS IS THE WORST THING YOU CAN DO!!! WHEN YOU START FEELING SORRY FOR YOURSELF AND CRYING FULL OF SELF-PITY THAT IS THE TIME TO STAND UP AND TELL THE DEVIL TO GO TO HELL!!!Then stop crying and feeling sorry for yourself. Think of the future that contains something positive. BUT, DO NOT DWELL ON THE PAST, BECAUSE THE IS ANOTHER ONE OF THE DEVIL'S TRAPS, DWELLING ON HOW THINGS USE TO BE!!! SO DON'T GO THEIR EITHER!!!!I love you! Truly I do.Ronnie B.aka The Love Doctor

Love cheap thrills? Enjoy PC-to-Phone calls to 30+ countries for just 2¢/min with Yahoo! Messenger with Voice. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database