Re: My Thoughts on Caregivers on our Board

[Guest guest]

Thank you, Joyce, for your welcome & balanced words of wisdom & compassion.

in Oz>> > O.K. Here is where I stand as far as caregivers being on our board.> > When I first came here....post #300....we had patients and caregivers. > Bob from Utah, who posted for his wife. Dorothy Scarland who posted for> Bill. Then, Ann who posted for her dad. Teri who posts for Jon, most of> the time. Cyndi, now who posts for her dad.....many more.> > There are people who are suffering with this vicious disease who will> not come near a computer and in this way their loved ones keep them> connected to the rest of us.> > I have learned from these people. For instance Bob told me about the> rolling back pack and told Ginger how to make a ramp for her scooter.> Caregivers learn how to help their loved ones through our experiences> and suggestions> > I do agree that the complaints and expressions of frustrations about> caring for grouchy people like ourselves need to be expressed elsewhere.> I admire you people who deal with people like me. I can be a bear. > Difficult. Wish my husband would go the caregiver site and let loose! > But, will not touch a computer. He just takes long walks!> > But, to say that only "patients" themselves may be here....when there> are those speaking for patients (such as Cyndi)....limits them and> restricts all of us so that we and they miss good information.> > Let us use common sense. If you need to complain, cry, express> frustration about dealing with a patient.....go to the caregiver's site.> If you are here to support and relay information to a patient who will> not use the computer, then this is the place for you. You can be both> places, even.> > And for my sake.....PLEASE.....stop the bickering. It upsets me and I> am just exhausted with emotional issues. Leave decisions about who can> and who can not be on this board to those of us who try to make wise> decisions about this. Especially Leanne, who is the owner of this site.> > If you have to blow off steam about another person who posts, it does> not need to be on open forum. We don't need a bunch of hurt feelings> for those of us who are struggling against death every day. Take you> complaint by private e-mail to Leanne, Beth, or myself. We will> try to make the right decision. Just keep in mind that we are very sick> ourselves!> > Don't just arbitrarily make a statement to the board about who can and> who cannot post here. Good grief, who needs this mean spirited> dialogue. Think before you speak. Run it past Leanne or us.> > I am here and I hope that you are here to help others and get much> needed support in the fight against a vicious enemy. Let us love and be> gentle with one another.> > Hugs, Joyce D.> > Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension> 2008> Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected> for Transplant 2006> .....I will not forget you. Behold, I have engraved you on the palm of> my hands. Isaiah 49: 15-16>

[Guest guest]

Joyce,

Thank you for a calm, measured post on this most difficult and emotion laden topic. Once again you are a voice of reason for all of us.

To everyone else and especially to all who have been so upset and hurt by the poll and subsquent conversation. Leanne posted the poll as an attempt to gather information. That's all. No fingers were being pointed and no one was being asked to leave. That's all I'm going to say about the poll because I know Leanne intends to post later on.

I'll repeat what I've said previously on the board and in numerous private emails with folks who have been upset. No one has to read every post. If there is someone whose posts consistently upset or offend you, don't read them. If you get into a dispute with someone, please feel free to take it off the board to private email. Or as Joyce said, bring it to one of us (myself, Joyce or Leanne) and we will do our best to help resolve it.

Finally everyone remember that we're all sick. We've all had a devastating diagnosis and are struggling to stay alive. Is it really necessary to use so much precious time and energy this way? Really? I hope not.

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

My Thoughts on Caregivers on our Board

O.K. Here is where I stand as far as caregivers being on our board.

When I first came here....post #300....we had patients and caregivers. Bob from Utah, who posted for his wife. Dorothy Scarland who posted for Bill. Then, Ann who posted for her dad. Teri who posts for Jon, most of the time. Cyndi, now who posts for her dad.....many more.

There are people who are suffering with this vicious disease who will not come near a computer and in this way their loved ones keep them connected to the rest of us.

I have learned from these people. For instance Bob told me about the rolling back pack and told Ginger how to make a ramp for her scooter. Caregivers learn how to help their loved ones through our experiences and suggestions

I do agree that the complaints and expressions of frustrations about caring for grouchy people like ourselves need to be expressed elsewhere. I admire you people who deal with people like me. I can be a bear. Difficult. Wish my husband would go the caregiver site and let loose! But, will not touch a computer. He just takes long walks!

But, to say that only "patients" themselves may be here....when there are those speaking for patients (such as Cyndi)....limits them and restricts all of us so that we and they miss good information.

Let us use common sense. If you need to complain, cry, express frustration about dealing with a patient..... go to the caregiver's site. If you are here to support and relay information to a patient who will not use the computer, then this is the place for you. You can be both places, even.

And for my sake.....PLEASE. ....stop the bickering. It upsets me and I am just exhausted with emotional issues. Leave decisions about who can and who can not be on this board to those of us who try to make wise decisions about this. Especially Leanne, who is the owner of this site.

If you have to blow off steam about another person who posts, it does not need to be on open forum. We don't need a bunch of hurt feelings for those of us who are struggling against death every day. Take you complaint by private e-mail to Leanne, Beth, or myself. We will try to make the right decision. Just keep in mind that we are very sick ourselves!

Don't just arbitrarily make a statement to the board about who can and who cannot post here. Good grief, who needs this mean spirited dialogue. Think before you speak. Run it past Leanne or us.

I am here and I hope that you are here to help others and get much needed support in the fight against a vicious enemy. Let us love and be gentle with one another.

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16

[Guest guest]

Joyce,

Thank you for a calm, measured post on this most difficult and emotion laden topic. Once again you are a voice of reason for all of us.

To everyone else and especially to all who have been so upset and hurt by the poll and subsquent conversation. Leanne posted the poll as an attempt to gather information. That's all. No fingers were being pointed and no one was being asked to leave. That's all I'm going to say about the poll because I know Leanne intends to post later on.

I'll repeat what I've said previously on the board and in numerous private emails with folks who have been upset. No one has to read every post. If there is someone whose posts consistently upset or offend you, don't read them. If you get into a dispute with someone, please feel free to take it off the board to private email. Or as Joyce said, bring it to one of us (myself, Joyce or Leanne) and we will do our best to help resolve it.

Finally everyone remember that we're all sick. We've all had a devastating diagnosis and are struggling to stay alive. Is it really necessary to use so much precious time and energy this way? Really? I hope not.

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

My Thoughts on Caregivers on our Board

O.K. Here is where I stand as far as caregivers being on our board.

When I first came here....post #300....we had patients and caregivers. Bob from Utah, who posted for his wife. Dorothy Scarland who posted for Bill. Then, Ann who posted for her dad. Teri who posts for Jon, most of the time. Cyndi, now who posts for her dad.....many more.

There are people who are suffering with this vicious disease who will not come near a computer and in this way their loved ones keep them connected to the rest of us.

I have learned from these people. For instance Bob told me about the rolling back pack and told Ginger how to make a ramp for her scooter. Caregivers learn how to help their loved ones through our experiences and suggestions

I do agree that the complaints and expressions of frustrations about caring for grouchy people like ourselves need to be expressed elsewhere. I admire you people who deal with people like me. I can be a bear. Difficult. Wish my husband would go the caregiver site and let loose! But, will not touch a computer. He just takes long walks!

But, to say that only "patients" themselves may be here....when there are those speaking for patients (such as Cyndi)....limits them and restricts all of us so that we and they miss good information.

Let us use common sense. If you need to complain, cry, express frustration about dealing with a patient..... go to the caregiver's site. If you are here to support and relay information to a patient who will not use the computer, then this is the place for you. You can be both places, even.

And for my sake.....PLEASE. ....stop the bickering. It upsets me and I am just exhausted with emotional issues. Leave decisions about who can and who can not be on this board to those of us who try to make wise decisions about this. Especially Leanne, who is the owner of this site.

If you have to blow off steam about another person who posts, it does not need to be on open forum. We don't need a bunch of hurt feelings for those of us who are struggling against death every day. Take you complaint by private e-mail to Leanne, Beth, or myself. We will try to make the right decision. Just keep in mind that we are very sick ourselves!

Don't just arbitrarily make a statement to the board about who can and who cannot post here. Good grief, who needs this mean spirited dialogue. Think before you speak. Run it past Leanne or us.

I am here and I hope that you are here to help others and get much needed support in the fight against a vicious enemy. Let us love and be gentle with one another.

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16

[Guest guest]

Joyce,

thank you , this was so... necessary, your words have come through

in the haze of confusion, frustration and anger i hope good sense

prevails and things go back to being normal , just as they were a

few days back, things have snow balled into somthing very ugly.

We certainly dont have to deal with this.

All those who are here to provide moral support should be here ,

there are some care givers who are so close to their loved one

(patient ) that they know more about the diease and its problems

more than the sufferer and they wish to know more so that they can

help .

K who is battling with disease as much as Don , so is Teri and

many other CGs.This forum has not been used by them to vent their

frustrations , if anyone of them does so then MB, joyce and Leanne

are here to take Care of it and rein them in.

I hope and pray things come back to normalcy.Our group is too nice

t, too unique to let squabbles spoil everything

Good luck to us.

geeat

-- In Breathe-Support , " Joyce "

wrote:

>

>

> O.K. Here is where I stand as far as caregivers being on our board.

>

> When I first came here....post #300....we had patients and

caregivers.

> Bob from Utah, who posted for his wife. Dorothy Scarland who

posted for

> Bill. Then, Ann who posted for her dad. Teri who posts for Jon,

most of

> the time. Cyndi, now who posts for her dad.....many more.

>

> There are people who are suffering with this vicious disease who

will

> not come near a computer and in this way their loved ones keep them

> connected to the rest of us.

>

> I have learned from these people. For instance Bob told me about

the

> rolling back pack and told Ginger how to make a ramp for her

scooter.

> Caregivers learn how to help their loved ones through our

experiences

> and suggestions

>

> I do agree that the complaints and expressions of frustrations

about

> caring for grouchy people like ourselves need to be expressed

elsewhere.

> I admire you people who deal with people like me. I can be a

bear.

> Difficult. Wish my husband would go the caregiver site and let

loose!

> But, will not touch a computer. He just takes long walks!

>

> But, to say that only " patients " themselves may be here....when

there

> are those speaking for patients (such as Cyndi)....limits them and

> restricts all of us so that we and they miss good information.

>

> Let us use common sense. If you need to complain, cry, express

> frustration about dealing with a patient.....go to the caregiver's

site.

> If you are here to support and relay information to a patient who

will

> not use the computer, then this is the place for you. You can be

both

> places, even.

>

> And for my sake.....PLEASE.....stop the bickering. It upsets me

and I

> am just exhausted with emotional issues. Leave decisions about

who can

> and who can not be on this board to those of us who try to make

wise

> decisions about this. Especially Leanne, who is the owner of this

site.

>

> If you have to blow off steam about another person who posts, it

does

> not need to be on open forum. We don't need a bunch of hurt

feelings

> for those of us who are struggling against death every day. Take

you

> complaint by private e-mail to Leanne, Beth, or myself. We

will

> try to make the right decision. Just keep in mind that we are

very sick

> ourselves!

>

> Don't just arbitrarily make a statement to the board about who can

and

> who cannot post here. Good grief, who needs this mean spirited

> dialogue. Think before you speak. Run it past Leanne or us.

>

> I am here and I hope that you are here to help others and get much

> needed support in the fight against a vicious enemy. Let us love

and be

> gentle with one another.

>

> Hugs, Joyce D.

>

> Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary

Hypertension

> 2008

> Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc)

Rejected

> for Transplant 2006

> .....I will not forget you. Behold, I have engraved you on the

palm of

> my hands. Isaiah 49: 15-16

>

[Guest guest]

Joyce,

thank you , this was so... necessary, your words have come through

in the haze of confusion, frustration and anger i hope good sense

prevails and things go back to being normal , just as they were a

few days back, things have snow balled into somthing very ugly.

We certainly dont have to deal with this.

All those who are here to provide moral support should be here ,

there are some care givers who are so close to their loved one

(patient ) that they know more about the diease and its problems

more than the sufferer and they wish to know more so that they can

help .

K who is battling with disease as much as Don , so is Teri and

many other CGs.This forum has not been used by them to vent their

frustrations , if anyone of them does so then MB, joyce and Leanne

are here to take Care of it and rein them in.

I hope and pray things come back to normalcy.Our group is too nice

t, too unique to let squabbles spoil everything

Good luck to us.

geeat

-- In Breathe-Support , " Joyce "

wrote:

>

>

> O.K. Here is where I stand as far as caregivers being on our board.

>

> When I first came here....post #300....we had patients and

caregivers.

> Bob from Utah, who posted for his wife. Dorothy Scarland who

posted for

> Bill. Then, Ann who posted for her dad. Teri who posts for Jon,

most of

> the time. Cyndi, now who posts for her dad.....many more.

>

> There are people who are suffering with this vicious disease who

will

> not come near a computer and in this way their loved ones keep them

> connected to the rest of us.

>

> I have learned from these people. For instance Bob told me about

the

> rolling back pack and told Ginger how to make a ramp for her

scooter.

> Caregivers learn how to help their loved ones through our

experiences

> and suggestions

>

> I do agree that the complaints and expressions of frustrations

about

> caring for grouchy people like ourselves need to be expressed

elsewhere.

> I admire you people who deal with people like me. I can be a

bear.

> Difficult. Wish my husband would go the caregiver site and let

loose!

> But, will not touch a computer. He just takes long walks!

>

> But, to say that only " patients " themselves may be here....when

there

> are those speaking for patients (such as Cyndi)....limits them and

> restricts all of us so that we and they miss good information.

>

> Let us use common sense. If you need to complain, cry, express

> frustration about dealing with a patient.....go to the caregiver's

site.

> If you are here to support and relay information to a patient who

will

> not use the computer, then this is the place for you. You can be

both

> places, even.

>

> And for my sake.....PLEASE.....stop the bickering. It upsets me

and I

> am just exhausted with emotional issues. Leave decisions about

who can

> and who can not be on this board to those of us who try to make

wise

> decisions about this. Especially Leanne, who is the owner of this

site.

>

> If you have to blow off steam about another person who posts, it

does

> not need to be on open forum. We don't need a bunch of hurt

feelings

> for those of us who are struggling against death every day. Take

you

> complaint by private e-mail to Leanne, Beth, or myself. We

will

> try to make the right decision. Just keep in mind that we are

very sick

> ourselves!

>

> Don't just arbitrarily make a statement to the board about who can

and

> who cannot post here. Good grief, who needs this mean spirited

> dialogue. Think before you speak. Run it past Leanne or us.

>

> I am here and I hope that you are here to help others and get much

> needed support in the fight against a vicious enemy. Let us love

and be

> gentle with one another.

>

> Hugs, Joyce D.

>

> Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary

Hypertension

> 2008

> Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc)

Rejected

> for Transplant 2006

> .....I will not forget you. Behold, I have engraved you on the

palm of

> my hands. Isaiah 49: 15-16

>