Re: My Misunderstood Post.......

January 23, 2002

In a message dated 1/23/2002 6:58:58 PM Pacific Standard Time,

tashastreeval@... writes:

> NO ONE , including family, wants to hear

> about how sick you are, how much pain your in

My husband absolutley wants to hear about these things because he

cares and wants to make sure I'm okay. He asks me I don't just tell him. He

has Reflex Sympathetic Dystropy and I ask him the same questions. We want to

know exactly how the other is feeling and what helps make it better so we

know what to do to improve each other's lives.

I do understand your general point, I think it just came across wrong.

You have to remember that people who join support groups usually have a more

severe case than the average person.

You say you're an active person and that's wonderful. I'm 24 and

sometimes I can't even walk to the bathroom myself because my joints are

literaly falling apart. It makes me feel better to talk about it because I

know that I'm not the only one. If it makes you feel worse that's your

personal feeling and you shouldn't be in a group like this. But you can't

speak or think for other people. You don't know what's in other peoples'

thoughts so you don't know what is or isn't good for them.

January 23, 2002

In a message dated 1/23/2002 6:58:58 PM Pacific Standard Time,

tashastreeval@... writes:

> NO ONE , including family, wants to hear

> about how sick you are, how much pain your in

My husband absolutley wants to hear about these things because he

cares and wants to make sure I'm okay. He asks me I don't just tell him. He

has Reflex Sympathetic Dystropy and I ask him the same questions. We want to

know exactly how the other is feeling and what helps make it better so we

know what to do to improve each other's lives.

I do understand your general point, I think it just came across wrong.

You have to remember that people who join support groups usually have a more

severe case than the average person.

You say you're an active person and that's wonderful. I'm 24 and

sometimes I can't even walk to the bathroom myself because my joints are

literaly falling apart. It makes me feel better to talk about it because I

know that I'm not the only one. If it makes you feel worse that's your

personal feeling and you shouldn't be in a group like this. But you can't

speak or think for other people. You don't know what's in other peoples'

thoughts so you don't know what is or isn't good for them.

January 23, 2002

--- tashastreeval tashastreeval@...>

wrote:

> I do realize that people have tremendous pain,

> I'm one of them

> myself. But I really believe that the posts

> that are being posted,

> especially to newbies are scaring the hell out

> of them. People are

> searching for answers and info, not to read

> from everybody that, its

> going to get worse, it will go from side to

> side eventually, you will

> be dealing with this the rest of your life, you

> will have this, you

> will have that etc... its ridiculous! Myself, I

> like to keep a

> positive attitude, not talk about being sick

> all the time and that

> I'm in all of this pain. Your mind controls

> your body both positively

> and negatively, depending how you think, maybe

> talking about this

> ailment, and that ailment, this medicine, that

> medicine, and all of

> the symptoms from hurt foot to bruised behind,

> from diarrhea to sore

> throat all because of costo/fibro, maybe all

> this talk is actually

> making it WORSE! I sympathize with those of us

> who are in pain, I

> just dont believe that talking about your

> sickness to family and

> friends on a constant basis is healthy, let

> alone being personal with

> strangers on the internet! Some people just

> like the sympathy and

> like to talk about whats wrong with them, and

> some on that support

> group, talk about everything under the sun

> relating to their health

> on a daily basis, no wonder they dont feel

> good! Believe me, if those

> people would stop for just a moment and realize

> that maybe friends

> and family misunderstand their pain, because

> their attitude about it

> has taken all of the healthy fun out of their

> life, and whether it

> hurts their feelings or not- NO ONE , including

> family, wants to hear

> about how sick you are, how much pain your in,

> what is swollen today,

> did you have a normal bowel movement, what

> pills work, what pills

> dont, how much you are taking, who prescribed

> them, on and on and on!

> Remember that God helps those who help

> themselves! There is more to

> that than what alot of those people realize! I

> just thought that the

> support group would be a little more helpful

> with info and less about

> who feels bad, how many milligrams they are

> taking of what kind of

> medicine etc... I had another man write me who

> totally agreed with

> what I said and also felt that those in the

> support group need to be

> a little more positive, both in their thinking

> and daily activity on

> the posts. For someone who came to the group

> due to unusual pain

> intheir chest, by the time I read several

> posts, I thought my life

> must be over, I'm doomed, I might as well give

> up now, my life is

> ruined, also with responses that told me, maybe

> its your heart, maybe

> its a stroke, GEESH!! It scared the hell out of

> me and I soon

> realized that it wasnt for me, because I am a

> positive person, an

> active person and I'm too young to accept what

> the others have

> accepted and that is, that costo/fibro is an

> ailment that will

> destroy my life, but ONLY IF I LET IT! You have

> my permission to

> forward this to the group as they may take a

> different view of me and

> theirself, because they truly misunderstood

> what I was trying to say

> and it is a known fact that people who enjoy

> being negative and

> sickly all the time, will be on the defensive

> when a friend or a

> family member challenges their thoughts on

> having a more positive

> attitude instead of the ole poor, pitiful me

> attitude. They need to

> also remember, EVERYONE has problems of all

> sorts, and no matter how

> bad they seem to be, there is ALWAYS someone

> who is worse off, so try

> having a more healthy conversation and

> discussion and they may soon

> discover the pain just might ease up!

>

> ---

>

That's the funniest post I've ever read!! But,

who are you? You didn't sign your name.

Joanne

__________________________________________________

January 23, 2002

--- tashastreeval tashastreeval@...>

wrote:

> I do realize that people have tremendous pain,

> I'm one of them

> myself. But I really believe that the posts

> that are being posted,

> especially to newbies are scaring the hell out

> of them. People are

> searching for answers and info, not to read

> from everybody that, its

> going to get worse, it will go from side to

> side eventually, you will

> be dealing with this the rest of your life, you

> will have this, you

> will have that etc... its ridiculous! Myself, I

> like to keep a

> positive attitude, not talk about being sick

> all the time and that

> I'm in all of this pain. Your mind controls

> your body both positively

> and negatively, depending how you think, maybe

> talking about this

> ailment, and that ailment, this medicine, that

> medicine, and all of

> the symptoms from hurt foot to bruised behind,

> from diarrhea to sore

> throat all because of costo/fibro, maybe all

> this talk is actually

> making it WORSE! I sympathize with those of us

> who are in pain, I

> just dont believe that talking about your

> sickness to family and

> friends on a constant basis is healthy, let

> alone being personal with

> strangers on the internet! Some people just

> like the sympathy and

> like to talk about whats wrong with them, and

> some on that support

> group, talk about everything under the sun

> relating to their health

> on a daily basis, no wonder they dont feel

> good! Believe me, if those

> people would stop for just a moment and realize

> that maybe friends

> and family misunderstand their pain, because

> their attitude about it

> has taken all of the healthy fun out of their

> life, and whether it

> hurts their feelings or not- NO ONE , including

> family, wants to hear

> about how sick you are, how much pain your in,

> what is swollen today,

> did you have a normal bowel movement, what

> pills work, what pills

> dont, how much you are taking, who prescribed

> them, on and on and on!

> Remember that God helps those who help

> themselves! There is more to

> that than what alot of those people realize! I

> just thought that the

> support group would be a little more helpful

> with info and less about

> who feels bad, how many milligrams they are

> taking of what kind of

> medicine etc... I had another man write me who

> totally agreed with

> what I said and also felt that those in the

> support group need to be

> a little more positive, both in their thinking

> and daily activity on

> the posts. For someone who came to the group

> due to unusual pain

> intheir chest, by the time I read several

> posts, I thought my life

> must be over, I'm doomed, I might as well give

> up now, my life is

> ruined, also with responses that told me, maybe

> its your heart, maybe

> its a stroke, GEESH!! It scared the hell out of

> me and I soon

> realized that it wasnt for me, because I am a

> positive person, an

> active person and I'm too young to accept what

> the others have

> accepted and that is, that costo/fibro is an

> ailment that will

> destroy my life, but ONLY IF I LET IT! You have

> my permission to

> forward this to the group as they may take a

> different view of me and

> theirself, because they truly misunderstood

> what I was trying to say

> and it is a known fact that people who enjoy

> being negative and

> sickly all the time, will be on the defensive

> when a friend or a

> family member challenges their thoughts on

> having a more positive

> attitude instead of the ole poor, pitiful me

> attitude. They need to

> also remember, EVERYONE has problems of all

> sorts, and no matter how

> bad they seem to be, there is ALWAYS someone

> who is worse off, so try

> having a more healthy conversation and

> discussion and they may soon

> discover the pain just might ease up!

>

> ---

>

That's the funniest post I've ever read!! But,

who are you? You didn't sign your name.

Joanne

__________________________________________________

January 23, 2002

--- GreenEyez1978@... wrote:

> In a message dated 1/23/2002 6:58:58 PM Pacific

> Standard Time,

> tashastreeval@... writes:

>

> > NO ONE , including family, wants to hear

> > about how sick you are, how much pain your in

>

> My husband absolutley wants to hear

> about these things because he

> cares and wants to make sure I'm okay. He asks

> me I don't just tell him. He

> has Reflex Sympathetic Dystropy and I ask him

> the same questions. We want to

> know exactly how the other is feeling and what

> helps make it better so we

> know what to do to improve each other's lives.

> I do understand your general point, I

> think it just came across wrong.

> You have to remember that people who join

> support groups usually have a more

> severe case than the average person.

> You say you're an active person and

> that's wonderful. I'm 24 and

> sometimes I can't even walk to the bathroom

> myself because my joints are

> literaly falling apart. It makes me feel better

> to talk about it because I

> know that I'm not the only one. If it makes you

> feel worse that's your

> personal feeling and you shouldn't be in a

> group like this. But you can't

> speak or think for other people. You don't know

> what's in other peoples'

> thoughts so you don't know what is or isn't

> good for them.

>

> [Non-text portions of this message have been

> removed]

>

Actually, most people don't want to hear about

our pain. Mine started in 1974 when no one had

even heard of it. I was only 22 and in agony. I

called my mom often. Then, one time when I

called her, she said, " Do you realize you never

even ask how we are? You just start talking

about your pain. " She'll never know how much

that hurt me or how much I wish she had felt 'my

pain' for just one day. There weren't even

computers then. Well, my fibro finally got

better, not because of some magic pills. I guess

God just decided to give me a break. It's not

gone, but on a scale of 1 to 10, it's a 1 now,

and I don't even know why.

When you are able to stop thinking about the

pain, it's because it's gone, or almost.

I take Prozac (20 mg) and Flexeril (2x a day),

and it's working. I took Elavil for about 17

years. It helped minimally but made me gain los

of weight.

Joanne

__________________________________________________

January 23, 2002

--- GreenEyez1978@... wrote:

> In a message dated 1/23/2002 6:58:58 PM Pacific

> Standard Time,

> tashastreeval@... writes:

>

> > NO ONE , including family, wants to hear

> > about how sick you are, how much pain your in

>

> My husband absolutley wants to hear

> about these things because he

> cares and wants to make sure I'm okay. He asks

> me I don't just tell him. He

> has Reflex Sympathetic Dystropy and I ask him

> the same questions. We want to

> know exactly how the other is feeling and what

> helps make it better so we

> know what to do to improve each other's lives.

> I do understand your general point, I

> think it just came across wrong.

> You have to remember that people who join

> support groups usually have a more

> severe case than the average person.

> You say you're an active person and

> that's wonderful. I'm 24 and

> sometimes I can't even walk to the bathroom

> myself because my joints are

> literaly falling apart. It makes me feel better

> to talk about it because I

> know that I'm not the only one. If it makes you

> feel worse that's your

> personal feeling and you shouldn't be in a

> group like this. But you can't

> speak or think for other people. You don't know

> what's in other peoples'

> thoughts so you don't know what is or isn't

> good for them.

>

> [Non-text portions of this message have been

> removed]

>

Actually, most people don't want to hear about

our pain. Mine started in 1974 when no one had

even heard of it. I was only 22 and in agony. I

called my mom often. Then, one time when I

called her, she said, " Do you realize you never

even ask how we are? You just start talking

about your pain. " She'll never know how much

that hurt me or how much I wish she had felt 'my

pain' for just one day. There weren't even

computers then. Well, my fibro finally got

better, not because of some magic pills. I guess

God just decided to give me a break. It's not

gone, but on a scale of 1 to 10, it's a 1 now,

and I don't even know why.

When you are able to stop thinking about the

pain, it's because it's gone, or almost.

I take Prozac (20 mg) and Flexeril (2x a day),

and it's working. I took Elavil for about 17

years. It helped minimally but made me gain los

of weight.

Joanne

__________________________________________________

January 23, 2002

--- GreenEyez1978@... wrote:

> In a message dated 1/23/2002 6:58:58 PM Pacific

> Standard Time,

> tashastreeval@... writes:

>

> > NO ONE , including family, wants to hear

> > about how sick you are, how much pain your in

>

> My husband absolutley wants to hear

> about these things because he

> cares and wants to make sure I'm okay. He asks

> me I don't just tell him. He

> has Reflex Sympathetic Dystropy and I ask him

> the same questions. We want to

> know exactly how the other is feeling and what

> helps make it better so we

> know what to do to improve each other's lives.

> I do understand your general point, I

> think it just came across wrong.

> You have to remember that people who join

> support groups usually have a more

> severe case than the average person.

> You say you're an active person and

> that's wonderful. I'm 24 and

> sometimes I can't even walk to the bathroom

> myself because my joints are

> literaly falling apart. It makes me feel better

> to talk about it because I

> know that I'm not the only one. If it makes you

> feel worse that's your

> personal feeling and you shouldn't be in a

> group like this. But you can't

> speak or think for other people. You don't know

> what's in other peoples'

> thoughts so you don't know what is or isn't

> good for them.

>

> [Non-text portions of this message have been

> removed]

>

Actually, most people don't want to hear about

our pain. Mine started in 1974 when no one had

even heard of it. I was only 22 and in agony. I

called my mom often. Then, one time when I

called her, she said, " Do you realize you never

even ask how we are? You just start talking

about your pain. " She'll never know how much

that hurt me or how much I wish she had felt 'my

pain' for just one day. There weren't even

computers then. Well, my fibro finally got

better, not because of some magic pills. I guess

God just decided to give me a break. It's not

gone, but on a scale of 1 to 10, it's a 1 now,

and I don't even know why.

When you are able to stop thinking about the

pain, it's because it's gone, or almost.

I take Prozac (20 mg) and Flexeril (2x a day),

and it's working. I took Elavil for about 17

years. It helped minimally but made me gain los

of weight.

Joanne

__________________________________________________

January 25, 2002

Dear Ms. Positive Thinker:

I thought that the purpose of a Support group was so that you could talk

about the PAIN, the sore butthole, the night cramps, the dry eyes that feels

like someone tried to sand them out with coarse grit sandpaper.

I thought the support group was there to listen to you cry about not being

unable to stand long enough to get thru a long check out line at the store,

or not being able to sit up long enough to go to the movies with your family.

I thought the support group was there to hear and understand when you are so

upset that when you took your kids to Disney World and they had to push you

around in a wheelchair because your hips and ankles were so red and swollen

that if you took one more step you knew you would die on the spot.

I thought that this support group was here so that when we have to attend our

little brothers funeral, (because he too had fibro and no relief from the

pain. And no support group. He thought that it would be easier to eat his

gun than it would be to live with this Shitty hand that he have been dealt)

and was unable to kneel during the church service because your left knee hurt

like someone had a burning steel rod jammed inside it, and the reason you

needed help to the car was not only because you were so upset over the tragic

event that had occurred, but you could no longer walk that day.

This group has been there for me during all the events above. I read about

every bump, ache, sore asshole, head ache, back pain and limp that someone

writes, Why do I do that..... Well, because someone did it for me, and then

they took the time to write back and tell me where I could get some relief

for the pain, or they just said " I UNDERSTAND, and I am praying for you "

That my friend is support. Don't come in here telling us that we need to be

POSITIVE and stop frightening the newbie's with our pain. If the NEWBIES

didn't have the same damn pain they would not have come in here for support

to begin with. I want to hear about Serena's bad day ... you know why,

because I want to be able to tell her that I UNDERSTAND HER PAIN and I want

to tell her that it may be better tomorrow, but if it isn't I WILL STILL

UNDERSTAND HER PAIN. It is all about validation, it is called SUPPORT, and

if that isn't what you want to do then go away ... we don't need ya.

Joan W. Furman

Hilliard, Ohio

January 25, 2002