Re: Broken Family Relationship

[Guest guest]

I distanced myself from my Mother when I first found out she had cancer. I did it because I felt the more I distanced myself, the less I would hurt. I came around after realizing how selfish I was being and also knowing that my mother would never leave me side in a time of sickness. Your daughter might be doing the same thing - distancing herself so she doesn't have to deal with the truth that her Mother is hurting and using a "mental illness" as the excuse. Maybe you could invite her into this group. She could see that people dealing with Neuro/Sarcoid deal with a wide variety of physical and mental ailments. Just a thought. I wish you the best. Kim sickomaomaissick wrote: I have a broken relationship with my daughter and son-in-law. My daughter will not talk with me. I think she thinks I have a mental illness. I don't know how to make her understand that the things going on with me physically sometimes makes me look like I am crazy. Does anyone have any suggestions?

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[Guest guest]

I distanced myself from my Mother when I first found out she had cancer. I did it because I felt the more I distanced myself, the less I would hurt. I came around after realizing how selfish I was being and also knowing that my mother would never leave me side in a time of sickness. Your daughter might be doing the same thing - distancing herself so she doesn't have to deal with the truth that her Mother is hurting and using a "mental illness" as the excuse. Maybe you could invite her into this group. She could see that people dealing with Neuro/Sarcoid deal with a wide variety of physical and mental ailments. Just a thought. I wish you the best. Kim sickomaomaissick wrote: I have a broken relationship with my daughter and son-in-law. My daughter will not talk with me. I think she thinks I have a mental illness. I don't know how to make her understand that the things going on with me physically sometimes makes me look like I am crazy. Does anyone have any suggestions?

Be a chatter box. Enjoy free PC-to-PC calls with Yahoo! Messenger with Voice.

[Guest guest]

I distanced myself from my Mother when I first found out she had cancer. I did it because I felt the more I distanced myself, the less I would hurt. I came around after realizing how selfish I was being and also knowing that my mother would never leave me side in a time of sickness. Your daughter might be doing the same thing - distancing herself so she doesn't have to deal with the truth that her Mother is hurting and using a "mental illness" as the excuse. Maybe you could invite her into this group. She could see that people dealing with Neuro/Sarcoid deal with a wide variety of physical and mental ailments. Just a thought. I wish you the best. Kim sickomaomaissick wrote: I have a broken relationship with my daughter and son-in-law. My daughter will not talk with me. I think she thinks I have a mental illness. I don't know how to make her understand that the things going on with me physically sometimes makes me look like I am crazy. Does anyone have any suggestions?

Be a chatter box. Enjoy free PC-to-PC calls with Yahoo! Messenger with Voice.

[Guest guest]

Kim,Thank you for replying. I talked with a former pastor and he said that my daughter might be afraid that she could have the same illness some day and that is why she is distancing herself from me at this time. There does seem to be a heriditary facter running in my family. I have one cousin that has pulmonary sarcoidosis and another one I think has neurosarcoidosis. Her doctor never made a diagnosis, he just treated the symptoms. He put in a shunt to drain fluid from around her brain. I will tell her about the group and about the wide variety of symptoms that people seem to have with this illness. Kathy Owens wrote: I distanced myself from my Mother when I first found out she had cancer. I did it because I felt the more I

distanced myself, the less I would hurt. I came around after realizing how selfish I was being and also knowing that my mother would never leave me side in a time of sickness. Your daughter might be doing the same thing - distancing herself so she doesn't have to deal with the truth that her Mother is hurting and using a "mental illness" as the excuse. Maybe you could invite her into this group. She could see that people dealing with Neuro/Sarcoid deal with a wide variety of physical and mental ailments. Just a thought. I wish you the best. Kim sickomaomaissick wrote: I have a broken relationship with my daughter and son-in-law. My daughter will not talk with

me. I think she thinks I have a mental illness. I don't know how to make her understand that the things going on with me physically sometimes makes me look like I am crazy. Does anyone have any suggestions? Be a chatter box. Enjoy free PC-to-PC calls with Yahoo! Messenger with Voice.

Ring'em or ping'em. Make PC-to-phone calls as low as 1¢/min with Yahoo! Messenger with Voice.

[Guest guest]

Kim,Thank you for replying. I talked with a former pastor and he said that my daughter might be afraid that she could have the same illness some day and that is why she is distancing herself from me at this time. There does seem to be a heriditary facter running in my family. I have one cousin that has pulmonary sarcoidosis and another one I think has neurosarcoidosis. Her doctor never made a diagnosis, he just treated the symptoms. He put in a shunt to drain fluid from around her brain. I will tell her about the group and about the wide variety of symptoms that people seem to have with this illness. Kathy Owens wrote: I distanced myself from my Mother when I first found out she had cancer. I did it because I felt the more I

distanced myself, the less I would hurt. I came around after realizing how selfish I was being and also knowing that my mother would never leave me side in a time of sickness. Your daughter might be doing the same thing - distancing herself so she doesn't have to deal with the truth that her Mother is hurting and using a "mental illness" as the excuse. Maybe you could invite her into this group. She could see that people dealing with Neuro/Sarcoid deal with a wide variety of physical and mental ailments. Just a thought. I wish you the best. Kim sickomaomaissick wrote: I have a broken relationship with my daughter and son-in-law. My daughter will not talk with

me. I think she thinks I have a mental illness. I don't know how to make her understand that the things going on with me physically sometimes makes me look like I am crazy. Does anyone have any suggestions? Be a chatter box. Enjoy free PC-to-PC calls with Yahoo! Messenger with Voice.

Ring'em or ping'em. Make PC-to-phone calls as low as 1¢/min with Yahoo! Messenger with Voice.

[Guest guest]

Kim,Thank you for replying. I talked with a former pastor and he said that my daughter might be afraid that she could have the same illness some day and that is why she is distancing herself from me at this time. There does seem to be a heriditary facter running in my family. I have one cousin that has pulmonary sarcoidosis and another one I think has neurosarcoidosis. Her doctor never made a diagnosis, he just treated the symptoms. He put in a shunt to drain fluid from around her brain. I will tell her about the group and about the wide variety of symptoms that people seem to have with this illness. Kathy Owens wrote: I distanced myself from my Mother when I first found out she had cancer. I did it because I felt the more I

distanced myself, the less I would hurt. I came around after realizing how selfish I was being and also knowing that my mother would never leave me side in a time of sickness. Your daughter might be doing the same thing - distancing herself so she doesn't have to deal with the truth that her Mother is hurting and using a "mental illness" as the excuse. Maybe you could invite her into this group. She could see that people dealing with Neuro/Sarcoid deal with a wide variety of physical and mental ailments. Just a thought. I wish you the best. Kim sickomaomaissick wrote: I have a broken relationship with my daughter and son-in-law. My daughter will not talk with

me. I think she thinks I have a mental illness. I don't know how to make her understand that the things going on with me physically sometimes makes me look like I am crazy. Does anyone have any suggestions? Be a chatter box. Enjoy free PC-to-PC calls with Yahoo! Messenger with Voice.

Ring'em or ping'em. Make PC-to-phone calls as low as 1¢/min with Yahoo! Messenger with Voice.

[Guest guest]

My children also seemed to distance themselves from me when my

symptoms took a bottom dive about 8 months ago. It was only after I

asked on of them to go to the eye doctor with me when they explained

about doing surgery that there was a sudden change. I jokingly asked

them last week if any doctors had called them about me...I thought

surely they knew I was dying since the families had been spending so

much time with me and offering their help. Please undersand I am not

complaining..it is just a little worrisome when finially your family

understands!

I wrote a letter to my kids several months ago and posted it. If I

can find it I'll repost it for you

Good Luck and prayers!

Ruth

>

> I have a broken relationship with my daughter and son-in-law. My

> daughter will not talk with me. I think she thinks I have a mental

> illness. I don't know how to make her understand that the things

going

> on with me physically sometimes makes me look like I am crazy. Does

> anyone have any suggestions?

>

[Guest guest]

My children also seemed to distance themselves from me when my

symptoms took a bottom dive about 8 months ago. It was only after I

asked on of them to go to the eye doctor with me when they explained

about doing surgery that there was a sudden change. I jokingly asked

them last week if any doctors had called them about me...I thought

surely they knew I was dying since the families had been spending so

much time with me and offering their help. Please undersand I am not

complaining..it is just a little worrisome when finially your family

understands!

I wrote a letter to my kids several months ago and posted it. If I

can find it I'll repost it for you

Good Luck and prayers!

Ruth

>

> I have a broken relationship with my daughter and son-in-law. My

> daughter will not talk with me. I think she thinks I have a mental

> illness. I don't know how to make her understand that the things

going

> on with me physically sometimes makes me look like I am crazy. Does

> anyone have any suggestions?

>

[Guest guest]

My children also seemed to distance themselves from me when my

symptoms took a bottom dive about 8 months ago. It was only after I

asked on of them to go to the eye doctor with me when they explained

about doing surgery that there was a sudden change. I jokingly asked

them last week if any doctors had called them about me...I thought

surely they knew I was dying since the families had been spending so

much time with me and offering their help. Please undersand I am not

complaining..it is just a little worrisome when finially your family

understands!

I wrote a letter to my kids several months ago and posted it. If I

can find it I'll repost it for you

Good Luck and prayers!

Ruth

>

> I have a broken relationship with my daughter and son-in-law. My

> daughter will not talk with me. I think she thinks I have a mental

> illness. I don't know how to make her understand that the things

going

> on with me physically sometimes makes me look like I am crazy. Does

> anyone have any suggestions?

>

[Guest guest]

Letter to the family and friends of a Sarcoidosis patient…..….

Through no fault of my own - I have Sarcoidosis. It is not

something I would wish on any other person! Ever! It is like

having MS, Dementia, Neuropathy, Fibromyalgia and Arthritis all

wrapped in one. There is no cure, and no one even knows what causes

it. What I'm doing with the treatment I'm seeking--is trying to stop

the progression, and hopefully, reversing some of the effects. MD's

know about a lot of illnesses -- but Sarcoidosis is the long-shot.

And some of them are still reading the 1953 Merck manual that tells

them how to treat this disease. I will be persistent in seeking

the correct treatment me.

Sarcoid is even more difficult because the way I look and the way I

feel can be completely different. Please, understand I am trying

to get better but some days it will take a courage and strength I

have never known before just to get out of bed and get dressed.

Understand that some days I won't have that strength. The

exhaustion and fatigue isn't anything like I have ever experienced

before. It's not like the flu, rest and fluids won't make it go

away….although it will help. My short-term memory is bad, so if I

don't know what I've just said, what you just told me or I can`t

find the right word to tell you about something -- realize that it's

not that I don't care-because I do. I just can't process things like

I used to. I have numbness, so sometimes I can't tell when I've

picked up something so I may drop things. I may trip and fall or

stumble and look as though I have been drinking -- I have not

been. So, please understand if I am not the Mother-Father, Sister-

Brother or Grandmother-Grandfather I once was.

I will eventually need a lot of help from my family. In the

beginning I will need help with physical work but you may eventually

have to help pay the bills, as I may not know how to handle the

finances, but know I need to be involved. Shopping may require that

we go to the grocery store, and get what we need in the one stop,

and come home. Lunch out may turn into lunch in. In time you may

have to help me fill my medication container to insure I take the

medications correctly. Pacing myself is so very important. I will

need to learn to stop, instead of pushing myself too hard.. So

please understand If don`t have the stamina to play or work like I

want to. Understand that I do want to! When I wake up each day I

do not know what I will be able to do that day, so please understand

if plans must be changed at the last minute.

I will try to be as strong and independent for as long as I can be

and do for myself for as long as I can. I do not want to be a

burden to the ones I love the most. However, I need you to

understand that an offer of help will be the greatest gift you can

give to me. The two things that will be hardest for me to say

is… " I can't do it myself anymore'' " and I need your help''

Please remember that courage does not always come out as a roar…

sometime it comes out as a small voice telling myself -- rest today…

for rest today may mean I can do something important with you

tomorrow…

[Guest guest]

Hey

I think most people here have experienced family or friends distancing themselves but its not always because they dont care it can be because they dont know how to cope ( think about the sort of thing you can say when someone you know has lost someone they are close to its hard to find anything to say !) I have found that sometimes the best way to communicate with someone is to write them a letter exp;ain everything the ways this affects you and makes you feel, explain that you understand also the way they might be feeling - try not to make them feel bad for being distant and that you can understand why. Include information about the disease and they effects of treatment include the list of side effect from your medication if you have to ! Make contact - my girlfriend is only just starting to make contact with her family after many years and its taking time - little by little, she doesnt realise how important family should/can be - I rely upon my family to pick me up

and and help me whenever I need them - friend and lovers will come and go but my family will always love me and take care of me. Broken Family RelationshipI have a broken relationship with my daughter and son-in-law. My daughter will not talk with me. I think she thinks I have a mental illness. I don't know how to make her understand that the things going on with me physically sometimes makes me look like I am crazy. Does anyone have any suggestions? ~~~~ *** ~~~ *** ~~~ *** ~~~~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]

Clair, My mother was always there for me through thick and thin. When I first became ill, she fell into a state of huge denial. Within the denial, she distanced herself away. I also think she didn't know how to handle the situation like you have mentioned. She was no longer there for me. I wish I had the advice you have given us. A letter would have been the a perfect way to express what I was going through and convey the physical needs also. I did pass along a pamphlet that was recommended by the group which I thought would be extremely helpful . http://www.myida.org/theylook.htm (I also gave to other close family and friends) But she never commented back on it. A letter would have been more personable. Thank you for the advice. I hope it helps someone in the future.

Debbie clair morgan wrote: Hey I think most people here have experienced family or friends distancing themselves but its not always because they dont care it can be because they dont know how to cope ( think about the sort of thing you can say when someone you know has lost someone they are close to its hard to find anything to say !) I have found that sometimes the best way to communicate with someone is to write them a letter exp;ain everything the ways

this affects you and makes you feel, explain that you understand also the way they might be feeling - try not to make them feel bad for being distant and that you can understand why. Include information about the disease and they effects of treatment include the list of side effect from your medication if you have to ! Make contact - my girlfriend is only just starting to make contact with her family after many years and its taking time - little by little, she doesnt realise how important family should/can be - I rely upon my family to pick me up and and help me whenever I need them - friend and lovers will come and go but my family will always love me and take care of me. Broken Family RelationshipI have a broken relationship with my daughter and

son-in-law. My daughter will not talk with me. I think she thinks I have a mental illness. I don't know how to make her understand that the things going on with me physically sometimes makes me look like I am crazy. Does anyone have any suggestions? ~~~~ *** ~~~ *** ~~~ *** ~~~~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]

I'm sorry that you are going through this as well as physical problems. Is this a recent problem with your daughter? What kind of physical problems are you having? Do you believe that you are getting adequate medical care for your problems? Do you have other family or friends to lean on?

Sorry to ask so many questions, but more information might help us give you more guidance.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Broken Family RelationshipDate: Sat, 20 May 2006 06:24:31 -0000I have a broken relationship with my daughter and son-in-law. My daughter will not talk with me. I think she thinks I have a mental illness. I don't know how to make her understand that the things going on with me physically sometimes makes me look like I am crazy. Does anyone have any suggestions? ~~~~ *** ~~~ *** ~~~ *** ~~~~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]

I'm sorry that you are going through this as well as physical problems. Is this a recent problem with your daughter? What kind of physical problems are you having? Do you believe that you are getting adequate medical care for your problems? Do you have other family or friends to lean on?

Sorry to ask so many questions, but more information might help us give you more guidance.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Broken Family RelationshipDate: Sat, 20 May 2006 06:24:31 -0000I have a broken relationship with my daughter and son-in-law. My daughter will not talk with me. I think she thinks I have a mental illness. I don't know how to make her understand that the things going on with me physically sometimes makes me look like I am crazy. Does anyone have any suggestions? ~~~~ *** ~~~ *** ~~~ *** ~~~~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]

I'm sorry that you are going through this as well as physical problems. Is this a recent problem with your daughter? What kind of physical problems are you having? Do you believe that you are getting adequate medical care for your problems? Do you have other family or friends to lean on?

Sorry to ask so many questions, but more information might help us give you more guidance.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Broken Family RelationshipDate: Sat, 20 May 2006 06:24:31 -0000I have a broken relationship with my daughter and son-in-law. My daughter will not talk with me. I think she thinks I have a mental illness. I don't know how to make her understand that the things going on with me physically sometimes makes me look like I am crazy. Does anyone have any suggestions? ~~~~ *** ~~~ *** ~~~ *** ~~~~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