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So very many times I open up the emails and read where one or several of us

are going thru tough times with spouses, friends family that don't understand

what is happening to us.

They see small changes in us, and most would like to believe that our

physical weakness is brought about by deconditioning or weight gain or

depression.

In our frustration, we pull back, then they pull back, and then we find

ourselves feeling very much like we are out here alone-- with no one to turn to.

We go thru a period of guilt, anger, frustration, denial, bargaining (looking

at the choices we might have to get better), and then we go back into this

cycle and sometimes we even experience some acceptance of where we are at. This

cycle is the FIVE STAGES OF GRIEVING.

Sometimes when we're feeling especially alone, or feeling like no one cares,

or that we're the only one in pain, or we feel panic because we want an answer

and we want it now-- we forget that the person we're asking is everybit as

sick as we are.

We forget to ask each other what is going on. We get used to people

answering and filling our every need, and take for granted that this is just how

it

is.

We also go around and tell ourselves that we're not gonna post because my

" life " is better than everyone elses " life " , so I don't have a right to bitch

and

complain.

I want to share this with you, because we are all on the same path. We all

hurt, we all have been hurt, been scared that we won't get better, we've all

lost friends and loved ones and jobs, and financial security, and hobbies, and

had to change our lives to fit our " Sarcoidosis. "

What if we were to open up and share our pains? What if we were to open up

and share our joys and our sorrows? What if we were to open up and share our

laughter and our tears? What would happen?

Would we be told that we can't tell everyone that because if we do, then

they'll think- shit- I wish my life was as good as xxx. In the 2 years I've

been

part of this group, no one has ever been told that their pain, physical or

emotional isn't real. It has never happened and will never happen.

What does happen is that someone will reach out and tell you they understand

what you're going thru. They may have a book that helped them. They may have

a story to share. They may even be able to " one-up " you on the nightmare

that you're going thru--(we don't recommend this approach- lol). Mostly,

someone

will help you while you're struggling.

We will celebrate you in your joys and hold you in your tears. Support--

Compassionately,

Tracie

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Tracie, thanks. I cried by the time I finished reading your post. You really

have a gift of saying the right things at the right times. I needed that. I

quess...sometimes...we just need someone to say that it's alright to feel

exactly what we're feeling. I don't have alot of validation right

now...alright, I don't have any(except this group). And sometimes it's hard to

reach out cuz in the past when I tried I got shot down or my words were used

against me. . I need a soft place to fall. I guess I have some trust issues

right now but I'm really trying to reach out and trust others that I can really

just be me. Whatever that happens to be on any given day. I will try. hugs

S.

tiodaat@... wrote:So very many times I open up the emails and read where one

or several of us

are going thru tough times with spouses, friends family that don't understand

what is happening to us.

They see small changes in us, and most would like to believe that our

physical weakness is brought about by deconditioning or weight gain or

depression.

In our frustration, we pull back, then they pull back, and then we find

ourselves feeling very much like we are out here alone-- with no one to turn to.

We go thru a period of guilt, anger, frustration, denial, bargaining (looking

at the choices we might have to get better), and then we go back into this

cycle and sometimes we even experience some acceptance of where we are at. This

cycle is the FIVE STAGES OF GRIEVING.

Sometimes when we're feeling especially alone, or feeling like no one cares,

or that we're the only one in pain, or we feel panic because we want an answer

and we want it now-- we forget that the person we're asking is everybit as

sick as we are.

We forget to ask each other what is going on. We get used to people

answering and filling our every need, and take for granted that this is just how

it

is.

We also go around and tell ourselves that we're not gonna post because my

" life " is better than everyone elses " life " , so I don't have a right to bitch

and

complain.

I want to share this with you, because we are all on the same path. We all

hurt, we all have been hurt, been scared that we won't get better, we've all

lost friends and loved ones and jobs, and financial security, and hobbies, and

had to change our lives to fit our " Sarcoidosis. "

What if we were to open up and share our pains? What if we were to open up

and share our joys and our sorrows? What if we were to open up and share our

laughter and our tears? What would happen?

Would we be told that we can't tell everyone that because if we do, then

they'll think- shit- I wish my life was as good as xxx. In the 2 years I've

been

part of this group, no one has ever been told that their pain, physical or

emotional isn't real. It has never happened and will never happen.

What does happen is that someone will reach out and tell you they understand

what you're going thru. They may have a book that helped them. They may have

a story to share. They may even be able to " one-up " you on the nightmare

that you're going thru--(we don't recommend this approach- lol). Mostly,

someone

will help you while you're struggling.

We will celebrate you in your joys and hold you in your tears. Support--

Compassionately,

Tracie

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Tracie, thanks. I cried by the time I finished reading your post. You really

have a gift of saying the right things at the right times. I needed that. I

quess...sometimes...we just need someone to say that it's alright to feel

exactly what we're feeling. I don't have alot of validation right

now...alright, I don't have any(except this group). And sometimes it's hard to

reach out cuz in the past when I tried I got shot down or my words were used

against me. . I need a soft place to fall. I guess I have some trust issues

right now but I'm really trying to reach out and trust others that I can really

just be me. Whatever that happens to be on any given day. I will try. hugs

S.

tiodaat@... wrote:So very many times I open up the emails and read where one

or several of us

are going thru tough times with spouses, friends family that don't understand

what is happening to us.

They see small changes in us, and most would like to believe that our

physical weakness is brought about by deconditioning or weight gain or

depression.

In our frustration, we pull back, then they pull back, and then we find

ourselves feeling very much like we are out here alone-- with no one to turn to.

We go thru a period of guilt, anger, frustration, denial, bargaining (looking

at the choices we might have to get better), and then we go back into this

cycle and sometimes we even experience some acceptance of where we are at. This

cycle is the FIVE STAGES OF GRIEVING.

Sometimes when we're feeling especially alone, or feeling like no one cares,

or that we're the only one in pain, or we feel panic because we want an answer

and we want it now-- we forget that the person we're asking is everybit as

sick as we are.

We forget to ask each other what is going on. We get used to people

answering and filling our every need, and take for granted that this is just how

it

is.

We also go around and tell ourselves that we're not gonna post because my

" life " is better than everyone elses " life " , so I don't have a right to bitch

and

complain.

I want to share this with you, because we are all on the same path. We all

hurt, we all have been hurt, been scared that we won't get better, we've all

lost friends and loved ones and jobs, and financial security, and hobbies, and

had to change our lives to fit our " Sarcoidosis. "

What if we were to open up and share our pains? What if we were to open up

and share our joys and our sorrows? What if we were to open up and share our

laughter and our tears? What would happen?

Would we be told that we can't tell everyone that because if we do, then

they'll think- shit- I wish my life was as good as xxx. In the 2 years I've

been

part of this group, no one has ever been told that their pain, physical or

emotional isn't real. It has never happened and will never happen.

What does happen is that someone will reach out and tell you they understand

what you're going thru. They may have a book that helped them. They may have

a story to share. They may even be able to " one-up " you on the nightmare

that you're going thru--(we don't recommend this approach- lol). Mostly,

someone

will help you while you're struggling.

We will celebrate you in your joys and hold you in your tears. Support--

Compassionately,

Tracie

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Guest guest

so incredibly well said, my dear (our dear) Tracie.

YOU ARE SO GREAT TO EVERYONE. What a gift. Thank you.

Weller, Weller, Weller, Oy, Oy, Oy

> So very many times I open up the emails and read where one or several

> of us

> are going thru tough times with spouses, friends family that don't

> understand

> what is happening to us.

>

> They see small changes in us, and most would like to believe that our

> physical weakness is brought about by deconditioning or weight gain or

> depression. 

> In our frustration, we pull back, then they pull back, and then we find

> ourselves feeling very much like we are out here alone-- with no one

> to turn to. 

>

> We go thru a period of guilt, anger, frustration, denial, bargaining

> (looking

> at the choices we might have to get better), and then we go back into

> this

> cycle and sometimes we even experience some acceptance of where we are

> at.  This

> cycle is the FIVE STAGES OF GRIEVING.

>

> Sometimes when we're feeling especially alone, or feeling like no one

> cares,

> or that we're the only one in pain, or we feel panic because we want

> an answer

> and we want it now-- we forget that the person we're asking is

> everybit as

> sick as we are. 

>

> We forget to ask each other what is going on.  We get used to people

> answering and filling our every need, and take for granted that this

> is just how it

> is.

>

> We also go around and tell ourselves that we're not gonna post because

> my

> " life " is better than everyone elses " life " , so I don't have a right

> to bitch and

> complain. 

>

> I want to share this with you, because we are all on the same path. 

> We all

> hurt, we all have been hurt, been scared that we won't get better,

> we've all

> lost friends and loved ones and jobs, and financial security, and

> hobbies, and

> had to change our lives to fit our " Sarcoidosis. "  

>

> What if we were to open up and share our pains?  What if we were to

> open up

> and share our joys and our sorrows?  What if we were to open up and

> share our

> laughter and our tears?  What would happen? 

>

> Would we be told that we can't tell everyone that because if we do,

> then

> they'll think- shit- I wish my life was as good as xxx.  In the 2

> years I've been

> part of this group, no one has ever been told that their pain,

> physical or

> emotional isn't real.  It has never happened and will never happen. 

>

> What does happen is that someone will reach out and tell you they

> understand

> what you're going thru.  They may have a book that helped them.  They

> may have

> a story to share.  They may even be able to " one-up " you on the

> nightmare

> that you're going thru--(we don't recommend this approach- lol). 

> Mostly, someone

> will help you while you're struggling. 

>

> We will celebrate you in your joys and hold you in your tears. 

> Support--

>

> Compassionately,

> Tracie

>

>

>

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Guest guest

so incredibly well said, my dear (our dear) Tracie.

YOU ARE SO GREAT TO EVERYONE. What a gift. Thank you.

Weller, Weller, Weller, Oy, Oy, Oy

> So very many times I open up the emails and read where one or several

> of us

> are going thru tough times with spouses, friends family that don't

> understand

> what is happening to us.

>

> They see small changes in us, and most would like to believe that our

> physical weakness is brought about by deconditioning or weight gain or

> depression. 

> In our frustration, we pull back, then they pull back, and then we find

> ourselves feeling very much like we are out here alone-- with no one

> to turn to. 

>

> We go thru a period of guilt, anger, frustration, denial, bargaining

> (looking

> at the choices we might have to get better), and then we go back into

> this

> cycle and sometimes we even experience some acceptance of where we are

> at.  This

> cycle is the FIVE STAGES OF GRIEVING.

>

> Sometimes when we're feeling especially alone, or feeling like no one

> cares,

> or that we're the only one in pain, or we feel panic because we want

> an answer

> and we want it now-- we forget that the person we're asking is

> everybit as

> sick as we are. 

>

> We forget to ask each other what is going on.  We get used to people

> answering and filling our every need, and take for granted that this

> is just how it

> is.

>

> We also go around and tell ourselves that we're not gonna post because

> my

> " life " is better than everyone elses " life " , so I don't have a right

> to bitch and

> complain. 

>

> I want to share this with you, because we are all on the same path. 

> We all

> hurt, we all have been hurt, been scared that we won't get better,

> we've all

> lost friends and loved ones and jobs, and financial security, and

> hobbies, and

> had to change our lives to fit our " Sarcoidosis. "  

>

> What if we were to open up and share our pains?  What if we were to

> open up

> and share our joys and our sorrows?  What if we were to open up and

> share our

> laughter and our tears?  What would happen? 

>

> Would we be told that we can't tell everyone that because if we do,

> then

> they'll think- shit- I wish my life was as good as xxx.  In the 2

> years I've been

> part of this group, no one has ever been told that their pain,

> physical or

> emotional isn't real.  It has never happened and will never happen. 

>

> What does happen is that someone will reach out and tell you they

> understand

> what you're going thru.  They may have a book that helped them.  They

> may have

> a story to share.  They may even be able to " one-up " you on the

> nightmare

> that you're going thru--(we don't recommend this approach- lol). 

> Mostly, someone

> will help you while you're struggling. 

>

> We will celebrate you in your joys and hold you in your tears. 

> Support--

>

> Compassionately,

> Tracie

>

>

>

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