UPDATE

[Guest guest]

((((((((((((((((((((((((!)))))))))))))))))))))))))))

May God hold you in the palm of His comforting hand right now. While you know

that your Grandpa is in a better place, it still doesn't take away the void that

you feel right now.

Holding you close to my heart right now.

with love,

Jenni

Proud Air Force Mom!

May God guide and protect our troops!

Update

I believe that I shared with all of you that my Grandpa and my step dad were

in the hospital. My step dad is doing better and will be released soon we

hope.

I received a call late last night that my Grandpa passed away. This is my

last living grandparent. I lost all of them within the last 3 years. I am glad

for him that he is no longer in pain. His pain was so tremendous these last

couple of weeks. But, it hurts to lose anyone.

I just wanted to let you know.

Thanks friends,

[Guest guest]

I'm so sorry for your loss and will say a prayer for you and your

family.

Love,

C

On Apr 6, 2005 12:52 PM, faytk@... <faytk@...> wrote:

>

> I believe that I shared with all of you that my Grandpa and my step dad

> were

> in the hospital. My step dad is doing better and will be released soon we

> hope.

>

> I received a call late last night that my Grandpa passed away. This is my

> last living grandparent. I lost all of them within the last 3 years. I am

> glad

> for him that he is no longer in pain. His pain was so tremendous these

> last

> couple of weeks. But, it hurts to lose anyone.

>

> I just wanted to let you know.

>

> Thanks friends,

>

>

>

>

[Guest guest]

Hello ,

I am so sorry for your loss. I wish I could reach out and to give you the

comfort you need.

When I lost my Father all of our children, his grandchildren gathered around him

in the hospital for days. They all loved him so much. I fully understand how

dear grandparents can be to a child. I have an extremely strong relationship

with my grandchildren too so it really is something I can fully understand.

When our loved ones are in pain it creates such a mixture of feelings. You want

the suffering to stop and you feel so grateful when you know they are no longer

in pain, but your heart still feels like it has been orphaned for awhile and

there is an ache that wants to be calmed.

I will keep your family in my prayers.

Rashelle

Harness the Powerful Benefits of Oxygen with LifeLift.

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Update

I believe that I shared with all of you that my Grandpa and my step dad were

in the hospital. My step dad is doing better and will be released soon we

hope.

I received a call late last night that my Grandpa passed away. This is my

last living grandparent. I lost all of them within the last 3 years. I am glad

for him that he is no longer in pain. His pain was so tremendous these last

couple of weeks. But, it hurts to lose anyone.

I just wanted to let you know.

Thanks friends,

[Guest guest]

Love and prayers to you, - - I'm sorry about your Grandfather.

Melinda

Update

I believe that I shared with all of you that my Grandpa and my step dad were

in the hospital. My step dad is doing better and will be released soon we

hope.

I received a call late last night that my Grandpa passed away. This is my

last living grandparent. I lost all of them within the last 3 years. I am glad

for him that he is no longer in pain. His pain was so tremendous these last

couple of weeks. But, it hurts to lose anyone.

I just wanted to let you know.

Thanks friends,

[Guest guest]

dear jandc

yes i have but it would involve moving to cleveland because they would make it

really tough for me afterward..and everyone i thing anyhing of is where i live now

and its lonely enough now ...might have to consider it down the road though

FredJandc <jandc@...> wrote:

Fred, Have you considered talking to an Attorney? If pacing 99% of the time is required for you to get by, then that should be the setting.

Re: Update

Dear

I wish i had your guts and drive..my dr's seem to care more about how

long my battery is going to last rather than the quality of my life they

reduced my ace maker from working 99% of the time to 75% of the time

the palpatations and skiped beats and fluttering are driveing me nuts

i can hardly stand it any more ..when my pace maker was working

99% of the time i felt none of these things that are taking away any quality of life

i had before they made the adjustment..now im called a troublemaker and non compliant

you cry anf fight as much as it takes..why ar we afraid to speak up ..my wife died

last year of being a dibetic from the age of 13 ...she died at the age of 60

and had all of the effects of a long term diebetic and i fought for her every time

she had to go to the hospital now there is no one left to fight for me and i was a union

president and fought for1200 people day and night and cant seem to speak up

for myself ...my life is a living hell...i have a insynic pace maker /defibralator and

congestive heat faliure and when i speak for myself im called a trouble maker

you fiht like hell because no one knows there body better han you do

Fred (frdmwon@...)

Scrapnfriend@... wrote:

Hi ,

We love to hear from you and you can never monopolize us........as someone else said at some time or other we all need to get things out and be heard. Well this is your turn and don't ever feel bad about it.

Hi everyone...I got super frustrated yesterday and decided to stop grumbling and DO something! My son drove me to my GP'S office and I walked in (no appointment) and said that I needed to see her immediately.She listened to me and understood the level of frustation that I was at...considering I had tears streaming down my face and could barely talk, that wasn't an easy task in itself. She up'd my Toprol and vowed to call my EP and explain that something had to be done...and agreed to follow up with me in 3 days. I left feeling heard--which is priceless in book! I am still sending in events throughout the day...and will call my EP Doc tomorrow if I haven't heard

from him before then.Just wanted to update you all and thank you again for all the wonderful suggestions and support. I realize I have monopolized the board here lately...but thank you for your kind patience. Hopefully I can repay to each of you the kindness and love you've demonstrated to me.much love,

M in CAPlease visit the Zapper homepage athttp://www.ZapLife.org

MessengerShow us what our next emoticon should look like. Join the fun. Please visit the Zapper homepage athttp://www.ZapLife.org Please visit the Zapper homepage athttp://www.ZapLife.org

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[Guest guest]

Thanks

FredFred Luther <frdmwon@...> wrote:

dear jandc

yes i have but it would involve moving to cleveland because they would make it

really tough for me afterward..and everyone i thing anyhing of is where i live now

and its lonely enough now ...might have to consider it down the road though

FredJandc <jandc@...> wrote:

Fred, Have you considered talking to an Attorney? If pacing 99% of the time is required for you to get by, then that should be the setting.

Re: Update

Dear

I wish i had your guts and drive..my dr's seem to care more about how

long my battery is going to last rather than the quality of my life they

reduced my ace maker from working 99% of the time to 75% of the time

the palpatations and skiped beats and fluttering are driveing me nuts

i can hardly stand it any more ..when my pace maker was working

99% of the time i felt none of these things that are taking away any quality of life

i had before they made the adjustment..now im called a troublemaker and non compliant

you cry anf fight as much as it takes..why ar we afraid to speak up ..my wife died

last year of being a dibetic from the age of 13 ...she died at the age of 60

and had all of the effects of a long term diebetic and i fought for her every time

she had to go to the hospital now there is no one left to fight for me and i was a union

president and fought for1200 people day and night and cant seem to speak up

for myself ...my life is a living hell...i have a insynic pace maker /defibralator and

congestive heat faliure and when i speak for myself im called a trouble maker

you fiht like hell because no one knows there body better han you do

Fred (frdmwon@...)

Scrapnfriend@... wrote:

Hi ,

We love to hear from you and you can never monopolize us........as someone else said at some time or other we all need to get things out and be heard. Well this is your turn and don't ever feel bad about it.

Hi everyone...I got super frustrated yesterday and decided to stop grumbling and DO something! My son drove me to my GP'S office and I walked in (no appointment) and said that I needed to see her immediately.She listened to me and understood the level of frustation that I was at...considering I had tears streaming down my face and could barely talk, that wasn't an easy task in itself. She up'd my Toprol and vowed to call my EP and explain that something had to be done...and agreed to follow up with me in 3 days. I left feeling heard--which is priceless in book! I am still sending in events throughout the day...and will call my EP Doc tomorrow if I haven't heard

from him before then.Just wanted to update you all and thank you again for all the wonderful suggestions and support. I realize I have monopolized the board here lately...but thank you for your kind patience. Hopefully I can repay to each of you the kindness and love you've demonstrated to me.much love,

M in CAPlease visit the Zapper homepage athttp://www.ZapLife.org

MessengerShow us what our next emoticon should look like. Join the fun. Please visit the Zapper homepage athttp://www.ZapLife.org Please visit the Zapper homepage athttp://www.ZapLife.org

MessengerShow us what our next emoticon should look like. Join the fun. Please visit the Zapper homepage athttp://www.ZapLife.org

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[Guest guest]

I'm with you, Guin. I like hearing the stories about families and lives

apart from the ICD. It personalizes the posts so it is no longer just a

name on an email but a real person with a real family, a real life,

ups and downs, struggles and triumphs. An example is Turk, who is now

so busy that he doesn't get to post as often as before. And Bobby--with

his surgeries, trips to the casino, move to Mississippi. I just find

everyone so interesting.

On Apr 6, 2005, at 9:09 AM, Guin Van Dyke wrote:

>

>  

> I have been left wondering if I offended anyone with my post of my

> family...  I got no response...  I hope that was not the case, I only

> intended to share a little of myself and some positive thoughts.

>  

> I would like to know more about all you and your lives outside of

> cardiology.  I have gotten to know a bit of - we have been on

> here for years, and I enjoy hearing about Sharon's family, Turks' and

> 's etc.  I also enjoy hearing about Fred's life and wish I could

> do more to help him get through his tough times.

>  

> My thoughts to you all, guin

> ~guin

[Guest guest]

I'm with you, Guin. I like hearing the stories about families and lives

apart from the ICD. It personalizes the posts so it is no longer just a

name on an email but a real person with a real family, a real life,

ups and downs, struggles and triumphs. An example is Turk, who is now

so busy that he doesn't get to post as often as before. And Bobby--with

his surgeries, trips to the casino, move to Mississippi. I just find

everyone so interesting.

On Apr 6, 2005, at 9:09 AM, Guin Van Dyke wrote:

>

>  

> I have been left wondering if I offended anyone with my post of my

> family...  I got no response...  I hope that was not the case, I only

> intended to share a little of myself and some positive thoughts.

>  

> I would like to know more about all you and your lives outside of

> cardiology.  I have gotten to know a bit of - we have been on

> here for years, and I enjoy hearing about Sharon's family, Turks' and

> 's etc.  I also enjoy hearing about Fred's life and wish I could

> do more to help him get through his tough times.

>  

> My thoughts to you all, guin

> ~guin

[Guest guest]

So sorry

May you have the strength to be where need

R

Re: Update

I'm so sorry for your loss and will say a prayer for you and your

family.

Love,

C

On Apr 6, 2005 12:52 PM, faytk@... <faytk@...> wrote:

>

> I believe that I shared with all of you that my Grandpa and my step dad

> were

> in the hospital. My step dad is doing better and will be released soon we

> hope.

>

> I received a call late last night that my Grandpa passed away. This is my

> last living grandparent. I lost all of them within the last 3 years. I am

> glad

> for him that he is no longer in pain. His pain was so tremendous these

> last

> couple of weeks. But, it hurts to lose anyone.

>

> I just wanted to let you know.

>

> Thanks friends,

>

>

>

>

[Guest guest]

I am very sorry for all the needless suffering that many members of our group have to endure when doctors fail to understand their pain and discomfort. I will remember you in my prayers.

Jack

--- Original Message -----

From: Fred Luther

Sent: Wednesday, April 06, 2005 7:23 PM

Subject: Re: Update

dear jandc

yes i have but it would involve moving to cleveland because they would make it

really tough for me afterward..and everyone i thing anyhing of is where i live now

and its lonely enough now ...might have to consider it down the road though

FredJandc <jandc@...> wrote:

Fred, Have you considered talking to an Attorney? If pacing 99% of the time is required for you to get by, then that should be the setting.

Re: Update

Dear

I wish i had your guts and drive..my dr's seem to care more about how

long my battery is going to last rather than the quality of my life they

reduced my ace maker from working 99% of the time to 75% of the time

the palpatations and skiped beats and fluttering are driveing me nuts

i can hardly stand it any more ..when my pace maker was working

99% of the time i felt none of these things that are taking away any quality of life

i had before they made the adjustment..now im called a troublemaker and non compliant

you cry anf fight as much as it takes..why ar we afraid to speak up ..my wife died

last year of being a dibetic from the age of 13 ...she died at the age of 60

and had all of the effects of a long term diebetic and i fought for her every time

she had to go to the hospital now there is no one left to fight for me and i was a union

president and fought for1200 people day and night and cant seem to speak up

for myself ...my life is a living hell...i have a insynic pace maker /defibralator and

congestive heat faliure and when i speak for myself im called a trouble maker

you fiht like hell because no one knows there body better han you do

Fred (frdmwon@...)

Scrapnfriend@... wrote:

Hi ,

We love to hear from you and you can never monopolize us........as someone else said at some time or other we all need to get things out and be heard. Well this is your turn and don't ever feel bad about it.

Hi everyone...I got super frustrated yesterday and decided to stop grumbling and DO something! My son drove me to my GP'S office and I walked in (no appointment) and said that I needed to see her immediately.She listened to me and understood the level of frustation that I was at...considering I had tears streaming down my face and could barely talk, that wasn't an easy task in itself. She up'd my Toprol and vowed to call my EP and explain that something had to be done...and agreed to follow up with me in 3 days. I left feeling heard--which is priceless in book! I am still sending in events throughout the day...and will call my EP Doc tomorrow if I haven't heard from him before then.Just wanted to update you all and thank you again for all the wonderful suggestions and support. I realize I have monopolized the board here lately...but thank you for your kind patience. Hopefully I can repay to each of you the kindness and love you've demonstrated to me.much love,

M in CAPlease visit the Zapper homepage athttp://www.ZapLife.org

MessengerShow us what our next emoticon should look like. Join the fun. Please visit the Zapper homepage athttp://www.ZapLife.org Please visit the Zapper homepage athttp://www.ZapLife.org

MessengerShow us what our next emoticon should look like. Join the fun. Please visit the Zapper homepage athttp://www.ZapLife.org

[Guest guest]

I am very sorry for all the needless suffering that many members of our group have to endure when doctors fail to understand their pain and discomfort. I will remember you in my prayers.

Jack

--- Original Message -----

From: Fred Luther

Sent: Wednesday, April 06, 2005 7:23 PM

Subject: Re: Update

dear jandc

yes i have but it would involve moving to cleveland because they would make it

really tough for me afterward..and everyone i thing anyhing of is where i live now

and its lonely enough now ...might have to consider it down the road though

FredJandc <jandc@...> wrote:

Fred, Have you considered talking to an Attorney? If pacing 99% of the time is required for you to get by, then that should be the setting.

Re: Update

Dear

I wish i had your guts and drive..my dr's seem to care more about how

long my battery is going to last rather than the quality of my life they

reduced my ace maker from working 99% of the time to 75% of the time

the palpatations and skiped beats and fluttering are driveing me nuts

i can hardly stand it any more ..when my pace maker was working

99% of the time i felt none of these things that are taking away any quality of life

i had before they made the adjustment..now im called a troublemaker and non compliant

you cry anf fight as much as it takes..why ar we afraid to speak up ..my wife died

last year of being a dibetic from the age of 13 ...she died at the age of 60

and had all of the effects of a long term diebetic and i fought for her every time

she had to go to the hospital now there is no one left to fight for me and i was a union

president and fought for1200 people day and night and cant seem to speak up

for myself ...my life is a living hell...i have a insynic pace maker /defibralator and

congestive heat faliure and when i speak for myself im called a trouble maker

you fiht like hell because no one knows there body better han you do

Fred (frdmwon@...)

Scrapnfriend@... wrote:

Hi ,

We love to hear from you and you can never monopolize us........as someone else said at some time or other we all need to get things out and be heard. Well this is your turn and don't ever feel bad about it.

Hi everyone...I got super frustrated yesterday and decided to stop grumbling and DO something! My son drove me to my GP'S office and I walked in (no appointment) and said that I needed to see her immediately.She listened to me and understood the level of frustation that I was at...considering I had tears streaming down my face and could barely talk, that wasn't an easy task in itself. She up'd my Toprol and vowed to call my EP and explain that something had to be done...and agreed to follow up with me in 3 days. I left feeling heard--which is priceless in book! I am still sending in events throughout the day...and will call my EP Doc tomorrow if I haven't heard from him before then.Just wanted to update you all and thank you again for all the wonderful suggestions and support. I realize I have monopolized the board here lately...but thank you for your kind patience. Hopefully I can repay to each of you the kindness and love you've demonstrated to me.much love,

M in CAPlease visit the Zapper homepage athttp://www.ZapLife.org

MessengerShow us what our next emoticon should look like. Join the fun. Please visit the Zapper homepage athttp://www.ZapLife.org Please visit the Zapper homepage athttp://www.ZapLife.org

MessengerShow us what our next emoticon should look like. Join the fun. Please visit the Zapper homepage athttp://www.ZapLife.org

[Guest guest]

GET ON HERE AND TALK YOUR HEART OUT. YOU WILL NEVER SOUND LIKE A WHINE BUTT OR WAS THE TIT. THAT IS WHAT THIS GROUP IS FOR. ( i AM DOING MY MOM YELLING THING ARE YOU IMPRESSED).

Seriously get on here and talk to us. We all have our problems and we all have our pains some of then are icd related and a great deal of them aren't. The only people I ever consider to be whine tits are those that do nothing but complain no matter what advise or comfort is offered and still just keep grinding it to death but refuse to help themselves. I don't see much of that on here any more.

I have added you to my prayer list but sometimes I am sure that God looks down and says oh no its her again please close the curtain and turn off the sound.

Life is a learning experience and we all experience it differently. My health has been a big blow to my self pride. It has drained me down and it seems like everytime I think I see light of day I get dragged right back down to the bottom. I have days where I think what the hell am I trying to fight for what is there to hold on to. Why me why am I always on the losing side but then some small thing happens sometimes such a small thing that you almost miss it and then from somewhere deep within you remember why you fight to greet each new day.

And if that doesn't work for you. Just remember to do it because I said you had to snd I am the oldest.

Prayers and hugs and warm fuzzies

Sharon in Ohio

[Guest guest]

GET ON HERE AND TALK YOUR HEART OUT. YOU WILL NEVER SOUND LIKE A WHINE BUTT OR WAS THE TIT. THAT IS WHAT THIS GROUP IS FOR. ( i AM DOING MY MOM YELLING THING ARE YOU IMPRESSED).

Seriously get on here and talk to us. We all have our problems and we all have our pains some of then are icd related and a great deal of them aren't. The only people I ever consider to be whine tits are those that do nothing but complain no matter what advise or comfort is offered and still just keep grinding it to death but refuse to help themselves. I don't see much of that on here any more.

I have added you to my prayer list but sometimes I am sure that God looks down and says oh no its her again please close the curtain and turn off the sound.

Life is a learning experience and we all experience it differently. My health has been a big blow to my self pride. It has drained me down and it seems like everytime I think I see light of day I get dragged right back down to the bottom. I have days where I think what the hell am I trying to fight for what is there to hold on to. Why me why am I always on the losing side but then some small thing happens sometimes such a small thing that you almost miss it and then from somewhere deep within you remember why you fight to greet each new day.

And if that doesn't work for you. Just remember to do it because I said you had to snd I am the oldest.

Prayers and hugs and warm fuzzies

Sharon in Ohio

[Guest guest]

Jack, could you please remember this kid

in your prayers too? I really need um. Especially to stay positive.too much

since September. I’ve been good at staying positive,no negativity

allowed, but something keeps coming and the last few days I’m having hard

time. I haven’t posted much about it here because I didn’t want to

sound like a whine tit. But since you mentioned prayers………please,

toss one or two in there for me.

Deb

From: Jandc

[mailto:jandc@...]

Sent: Wednesday, April 06, 2005

8:05 PM

Subject: Re: Update

I am very sorry for all the needless suffering that many members of our

group have to endure when doctors fail to understand their pain and

discomfort. I will remember you in my prayers.

Jack

--- Original Message -----

From: Fred Luther

Sent: Wednesday, April

06, 2005 7:23 PM

Subject: Re:

Update

dear jandc

yes i have but it would involve moving to cleveland because they would make it

really tough for me afterward..and everyone i thing anyhing of is where

i live now

and its lonely enough now ...might have to consider it down the road

though

Fred

Jandc

<jandc@...> wrote:

Fred, Have you considered talking to an Attorney? If pacing 99% of the

time is required for you to get by, then that should be the setting.

Re:

Update

Dear

I wish i had your guts and drive..my dr's seem to care more about how

long my battery is going to last rather than the quality of my

life they

reduced my ace maker from working 99% of the time to 75% of the time

the palpatations and skiped beats and fluttering are driveing me nuts

i can hardly stand it any more ..when my pace maker was working

99% of the time i felt none of these things that are taking away

any quality of life

i had before they made the adjustment..now im called a troublemaker and

non compliant

you cry anf fight as much as it takes..why ar we afraid to speak up

..my wife died

last year of being a dibetic from the age of 13 ...she died at the age

of 60

and had all of the effects of a long term diebetic and i fought for her

every time

she had to go to the hospital now there is no one left to fight for me

and i was a union

president and fought for1200 people day and night and cant seem to

speak up

for myself ...my life is a living hell...i have a insynic pace maker

/defibralator and

congestive heat faliure and when i speak for myself im called a trouble

maker

you fiht like hell because no one knows there body better han you do

Fred (frdmwon@...)

Scrapnfriend@...

wrote:

Hi ,

We love to hear from you and you can never

monopolize us........as someone else said at some time or other we all need to

get things out and be heard. Well this is your turn and don't ever feel

bad about it.

Hi everyone...I got super

frustrated yesterday and decided to stop grumbling and DO something! My

son drove me to my GP'S office and I walked in (no appointment) and said that I

needed to see her immediately.

She listened to me and understood the level of frustation that I was

at...considering I had tears streaming down my face and could barely talk, that

wasn't an easy task in itself. She up'd my Toprol and vowed to call my EP

and explain that something had to be done...and agreed to follow up with me in

3 days. I left feeling heard--which is priceless in book! I am

still sending in events throughout the day...and will call my EP Doc tomorrow

if I haven't heard from him before then.

Just wanted to update you all and thank you again for all the wonderful

suggestions and support. I realize I have monopolized the board here

lately...but thank you for your kind patience. Hopefully I can repay to

each of you the kindness and love you've demonstrated to me.

much love,

M

in CA

Please

visit the Zapper homepage at

http://www.ZapLife.org

Messenger

Show us what our next emoticon should look like. Join

the fun.

Please

visit the Zapper homepage at

http://www.ZapLife.org

Please visit

the Zapper homepage at

http://www.ZapLife.org

Messenger

Show us what our next emoticon should look like. Join

the fun.

Please

visit the Zapper homepage at

http://www.ZapLife.org

Please visit

the Zapper homepage at

http://www.ZapLife.org

[Guest guest]

Jack, could you please remember this kid

in your prayers too? I really need um. Especially to stay positive.too much

since September. I’ve been good at staying positive,no negativity

allowed, but something keeps coming and the last few days I’m having hard

time. I haven’t posted much about it here because I didn’t want to

sound like a whine tit. But since you mentioned prayers………please,

toss one or two in there for me.

Deb

From: Jandc

[mailto:jandc@...]

Sent: Wednesday, April 06, 2005

8:05 PM

Subject: Re: Update

I am very sorry for all the needless suffering that many members of our

group have to endure when doctors fail to understand their pain and

discomfort. I will remember you in my prayers.

Jack

--- Original Message -----

From: Fred Luther

Sent: Wednesday, April

06, 2005 7:23 PM

Subject: Re:

Update

dear jandc

yes i have but it would involve moving to cleveland because they would make it

really tough for me afterward..and everyone i thing anyhing of is where

i live now

and its lonely enough now ...might have to consider it down the road

though

Fred

Jandc

<jandc@...> wrote:

Fred, Have you considered talking to an Attorney? If pacing 99% of the

time is required for you to get by, then that should be the setting.

Re:

Update

Dear

I wish i had your guts and drive..my dr's seem to care more about how

long my battery is going to last rather than the quality of my

life they

reduced my ace maker from working 99% of the time to 75% of the time

the palpatations and skiped beats and fluttering are driveing me nuts

i can hardly stand it any more ..when my pace maker was working

99% of the time i felt none of these things that are taking away

any quality of life

i had before they made the adjustment..now im called a troublemaker and

non compliant

you cry anf fight as much as it takes..why ar we afraid to speak up

..my wife died

last year of being a dibetic from the age of 13 ...she died at the age

of 60

and had all of the effects of a long term diebetic and i fought for her

every time

she had to go to the hospital now there is no one left to fight for me

and i was a union

president and fought for1200 people day and night and cant seem to

speak up

for myself ...my life is a living hell...i have a insynic pace maker

/defibralator and

congestive heat faliure and when i speak for myself im called a trouble

maker

you fiht like hell because no one knows there body better han you do

Fred (frdmwon@...)

Scrapnfriend@...

wrote:

Hi ,

We love to hear from you and you can never

monopolize us........as someone else said at some time or other we all need to

get things out and be heard. Well this is your turn and don't ever feel

bad about it.

Hi everyone...I got super

frustrated yesterday and decided to stop grumbling and DO something! My

son drove me to my GP'S office and I walked in (no appointment) and said that I

needed to see her immediately.

She listened to me and understood the level of frustation that I was

at...considering I had tears streaming down my face and could barely talk, that

wasn't an easy task in itself. She up'd my Toprol and vowed to call my EP

and explain that something had to be done...and agreed to follow up with me in

3 days. I left feeling heard--which is priceless in book! I am

still sending in events throughout the day...and will call my EP Doc tomorrow

if I haven't heard from him before then.

Just wanted to update you all and thank you again for all the wonderful

suggestions and support. I realize I have monopolized the board here

lately...but thank you for your kind patience. Hopefully I can repay to

each of you the kindness and love you've demonstrated to me.

much love,

M

in CA

Please

visit the Zapper homepage at

http://www.ZapLife.org

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[Guest guest]

Bridget sent me the link to look it

up. More people care about you than you know hon!

Deb

From:

IIPistacio@... [mailto:IIPistacio@...]

Sent: Wednesday, April 06, 2005

10:19 AM

Subject: Re: Re: Update

Deb,

How nice of you to look it up. So far I am now dealing

with what is to be the very best doctor at University

Hospital in Cleveland. I have underwent the battery

of test and 4 weeks ago under went another endo with injection of botox to see

if it could buy me some time and some relief. Has not helped. They

have called in the world renowned Dr. Olander and he order test of tube down nose

into stomach and a barium study which I have had so many times I think my butt

is solid impacted. We are now awaiting decision as to exactly what they

are going to do surgical and Olander is deciding how to get my strong enough to

with stand surgery. Blood pressure is to low and counts are al messed

up. I am now on liquid protein which I take very 2 hours, no solid foods

what so ever. Tell you what I don't even miss food at all.

I have had so much in the past few years with my health that

I am very angry and very afraid. This surgery scares the hell out of

me. They are also trying to figure out how to proceed as ICD will have to

be shut down. I know that I sound like a big baby but I am not sure that

I will mentally get through this. I am terrified

Sharon

Please

visit the Zapper homepage at

http://www.ZapLife.org

[Guest guest]

this touched me you are so right about everything you said Yep the internet is great! Hiranuma <mhiranuma@...> wrote:

Hang in there, Fred. You know something? That old addage "the squeaky wheel gets the grease" still applies. Bug them until they respond favorably. My son has cerebral palsy from a bout of viral encephalitis when he was an infant. He is now 26. We had to fight for him every step of the way. A team of Kaiser specialists even went so far as to tell us that they have to direct their "limited resources" to patients with a better chance of recovery. A friend has a daughter with a rare blood disease called alpha thalassemia. They were told she would die before the age of five. She is now 16. Her family has had to fight with the healthcare "professionals" the whole time to get proper care. She still receives transfusions twice a month and chelations at home (her body does not get rid of excess iron) and it is because of her mom's constant whining and complaining that Nikki is still alive today--and doing well in high school. When the docs see her mom coming they hide. She is demanding,

strong-willed, always insistent. She will cry at home in the closet but when she's facing the docs, she is the fierce mama lion. It's a sad state to have to be like that to get proper services but we do what we need to do. Our survival is at stake. We don't just want life, we want to have a quality of life, too; we want to launch that boat or visit those casinos or just sit in the sun and read a good book without feeling like our hearts are struggling to keep up. We want to watch our sons and daughters get married and have children. We want to spoil the grandkids, eat ice cream, and take long walks when the snow thaws and new buds sprout. We want to turn our faces to the sun and say it's good to be alive. We're all together on this journey and we hold each other's electronic hands for support. Ain't the internet great?

M

Re: Update

Dear

I wish i had your guts and drive..my dr's seem to care more about how

long my battery is going to last rather than the quality of my life they

reduced my ace maker from working 99% of the time to 75% of the time

the palpatations and skiped beats and fluttering are driveing me nuts

i can hardly stand it any more ..when my pace maker was working

99% of the time i felt none of these things that are taking away any quality of life

i had before they made the adjustment..now im called a troublemaker and non compliant

you cry anf fight as much as it takes..why ar we afraid to speak up ..my wife died

last year of being a dibetic from the age of 13 ...she died at the age of 60

and had all of the effects of a long term diebetic and i fought for her every time

she had to go to the hospital now there is no one left to fight for me and i was a union

president and fought for1200 people day and night and cant seem to speak up

for myself ...my life is a living hell...i have a insynic pace maker /defibralator and

congestive heat faliure and when i speak for myself im called a trouble maker

you fiht like hell because no one knows there body better han you do

Fred (frdmwon@...)

Scrapnfriend@... wrote:

Hi ,

We love to hear from you and you can never monopolize us........as someone else said at some time or other we all need to get things out and be heard. Well this is your turn and don't ever feel bad about it.

Hi everyone...I got super frustrated yesterday and decided to stop grumbling and DO something! My son drove me to my GP'S office and I walked in (no appointment) and said that I needed to see her immediately.She listened to me and understood the level of frustation that I was at...considering I had tears streaming down my face and could barely talk, that wasn't an easy task in itself. She up'd my Toprol and vowed to call my EP and explain that something had to be done...and agreed to follow up with me in 3 days. I left feeling heard--which is priceless in book! I am still sending in events throughout the day...and will call my EP Doc tomorrow if I haven't heard

from him before then.Just wanted to update you all and thank you again for all the wonderful suggestions and support. I realize I have monopolized the board here lately...but thank you for your kind patience. Hopefully I can repay to each of you the kindness and love you've demonstrated to me.much love,

M in CAPlease visit the Zapper homepage athttp://www.ZapLife.org

MessengerShow us what our next emoticon should look like. Join the fun. Please visit the Zapper homepage athttp://www.ZapLife.org Please visit the Zapper homepage athttp://www.ZapLife.org

Find local movie times and trailers on Movies.

[Guest guest]

In a message dated 5/11/2005 10:55:24 A.M. Eastern Standard Time,

lisa@... writes:

" Experience is something you don't get until just after you need it "

Boy is that the truth Leis!!!

Loree

[Guest guest]

In a message dated 5/11/2005 10:55:24 A.M. Eastern Standard Time,

lisa@... writes:

" Experience is something you don't get until just after you need it "

Boy is that the truth Leis!!!

Loree

[Guest guest]

If I might? Have you checked into somnoplasty for your son? OSA can be

treated remarkably wuickly using somnoplasty. BiPAP is very ineffective,

because it is rarely used properly or as often as directed. I would urge

you to look into somnoplasty somnoplasty.com and try that. Good luck.

Update

Well, we have been fighting with Nick's sleep issues for five years now

and

I'm hoping we can get them under control this year before we all go

bonkers.

(I feel like a sleep deprived zombie half the time, the first 4 years I

put

it off to having the two little ones and being pregnant.) We took Nick

to

the sleep clinic, the doc in charge is a lung specialist and is more

experienced with the adult population versus the pediatric population

feels that Nick

has OSA and may need a CPAP. He was going to talk to Nick's

pediatrician

about locating a sleep lab that is familiar with the pediatric

population.

Nick's pediatrician also referred us to a pediatric neurologist. She

suggested

trying Nick's clonidine dose all at night (instead of .05/am and

..1/pm). If

that doesn't work try increasing the Adderax (sp?) dosage

(antihistamine) since

it is helping his congestion (not sure if it's helping the sleep issue)

to

see if that helps. We are continuing his Melatonin since it does seem

to help

some ... just doesn't keep him out all night. We usually get 2-4 hours

straight sleep out of Nick then it's a crap shoot as to how much he

gets after

the first wake-up episode.

The pediatric neurologist doesn't want to mess with his Stratterra until

we

get the sleep issues figured out. She feels that since the Adderall Xr

had

the desired effect of calming, helping with the focus and impulsivity

that it

might have been the right type of medication even if it wasn't the right

one

-- Nick was extremely irritable and whiny on it unless it was a real

low dose

and then we saw an increase in the inattentiveness and impulsivity.

With the

Stratterra we still have the impulsivity issues (but there is some

difference as compared with giving him nothing).

The neurologist also asked us about growth hormone treatment for Nick.

Has

anyone gone this route for their child? If so, what have you found

with

using it? What are the pros and cons? She did mention that based on

Nick's age

and current height she calculates his adult height as 5'-3 " (my height

but

definitely a lot shorter than my DH and mostly what his brothers will

be).

(His bio dad is about 5'-6 " or 5'-7 " . My maternal grandfather was

6'-3 " , my dad

is 5'-6 " or 5'-7 " and my DH (the younger boys' bio dad) is 6'-3 " . ) I

was

so hoping Nick would make 5'-5 " or 5'-6 " not 5'-3 " . DH suggested I

look into

the pros and cons -- so I thought I'd check with you guys first. (Oh,

Nick

turns 12 on August 7th.)

No matter what we decide, the impression I got from the neurologist is

we

won't be changing, adding or adjusting any medications until we get the

sleep

issues straightened out, just in case some of the issues disappear or

less once

he gets sufficient sleep.

Nick will be in 5th grade at his home school come fall. We (DH & I)

basically told the special ed liaison that we didn't feel it was

necessary to move

him to a different school simply because that is where they typically

school

the moderate to severely mentally impaired students. We had several

concerns

about the potential move, including the behaviors of several of the

students

(we know them), the fact that the teacher didn't seem to eager that we

visit

her classroom (in fact, told us she had to have written permission from

the

parents of every child in her class) and lastly, due to comments from

the OT

who has had opportunities to view the classroom in question. I think

what

helped is the special ed liaison knew she didn't totally have our

support, the

principal's support or the staff's support in the proposed move. The

year

before the principal (who was getting ready to retire) was all for it.

This summer we enrolled Nick into private speech which I think may be

helping (he goes 3x a week). The biggest problem we have with Nick is

his attitude

-- if he decides he doesn't want to do something (or thinks he can't or

it

might require work) he just plain refuses to do it. (Hands folded across

chest, lower lip out, head down and the whiny " I can't " .)

Another problem we have been coming into is Nick's obsession with

checking

out web pages whenever he sees " www " and wanting to call the 1-800 # the

Pirates have. I think he thinks he will get to talk to a Pirate if he

calls it.

He keeps saying he wants to go to a Pirate game with DH. DH doesn't

think he

can handle a game -- not sure if it's Nick can't handle the game or DH

can't

handle Nick at a game.

Well, this is long so I'll sign off now.

Cari

[Guest guest]

If I might? Have you checked into somnoplasty for your son? OSA can be

treated remarkably wuickly using somnoplasty. BiPAP is very ineffective,

because it is rarely used properly or as often as directed. I would urge

you to look into somnoplasty somnoplasty.com and try that. Good luck.

Update

Well, we have been fighting with Nick's sleep issues for five years now

and

I'm hoping we can get them under control this year before we all go

bonkers.

(I feel like a sleep deprived zombie half the time, the first 4 years I

put

it off to having the two little ones and being pregnant.) We took Nick

to

the sleep clinic, the doc in charge is a lung specialist and is more

experienced with the adult population versus the pediatric population

feels that Nick

has OSA and may need a CPAP. He was going to talk to Nick's

pediatrician

about locating a sleep lab that is familiar with the pediatric

population.

Nick's pediatrician also referred us to a pediatric neurologist. She

suggested

trying Nick's clonidine dose all at night (instead of .05/am and

..1/pm). If

that doesn't work try increasing the Adderax (sp?) dosage

(antihistamine) since

it is helping his congestion (not sure if it's helping the sleep issue)

to

see if that helps. We are continuing his Melatonin since it does seem

to help

some ... just doesn't keep him out all night. We usually get 2-4 hours

straight sleep out of Nick then it's a crap shoot as to how much he

gets after

the first wake-up episode.

The pediatric neurologist doesn't want to mess with his Stratterra until

we

get the sleep issues figured out. She feels that since the Adderall Xr

had

the desired effect of calming, helping with the focus and impulsivity

that it

might have been the right type of medication even if it wasn't the right

one

-- Nick was extremely irritable and whiny on it unless it was a real

low dose

and then we saw an increase in the inattentiveness and impulsivity.

With the

Stratterra we still have the impulsivity issues (but there is some

difference as compared with giving him nothing).

The neurologist also asked us about growth hormone treatment for Nick.

Has

anyone gone this route for their child? If so, what have you found

with

using it? What are the pros and cons? She did mention that based on

Nick's age

and current height she calculates his adult height as 5'-3 " (my height

but

definitely a lot shorter than my DH and mostly what his brothers will

be).

(His bio dad is about 5'-6 " or 5'-7 " . My maternal grandfather was

6'-3 " , my dad

is 5'-6 " or 5'-7 " and my DH (the younger boys' bio dad) is 6'-3 " . ) I

was

so hoping Nick would make 5'-5 " or 5'-6 " not 5'-3 " . DH suggested I

look into

the pros and cons -- so I thought I'd check with you guys first. (Oh,

Nick

turns 12 on August 7th.)

No matter what we decide, the impression I got from the neurologist is

we

won't be changing, adding or adjusting any medications until we get the

sleep

issues straightened out, just in case some of the issues disappear or

less once

he gets sufficient sleep.

Nick will be in 5th grade at his home school come fall. We (DH & I)

basically told the special ed liaison that we didn't feel it was

necessary to move

him to a different school simply because that is where they typically

school

the moderate to severely mentally impaired students. We had several

concerns

about the potential move, including the behaviors of several of the

students

(we know them), the fact that the teacher didn't seem to eager that we

visit

her classroom (in fact, told us she had to have written permission from

the

parents of every child in her class) and lastly, due to comments from

the OT

who has had opportunities to view the classroom in question. I think

what

helped is the special ed liaison knew she didn't totally have our

support, the

principal's support or the staff's support in the proposed move. The

year

before the principal (who was getting ready to retire) was all for it.

This summer we enrolled Nick into private speech which I think may be

helping (he goes 3x a week). The biggest problem we have with Nick is

his attitude

-- if he decides he doesn't want to do something (or thinks he can't or

it

might require work) he just plain refuses to do it. (Hands folded across

chest, lower lip out, head down and the whiny " I can't " .)

Another problem we have been coming into is Nick's obsession with

checking

out web pages whenever he sees " www " and wanting to call the 1-800 # the

Pirates have. I think he thinks he will get to talk to a Pirate if he

calls it.

He keeps saying he wants to go to a Pirate game with DH. DH doesn't

think he

can handle a game -- not sure if it's Nick can't handle the game or DH

can't

handle Nick at a game.

Well, this is long so I'll sign off now.

Cari

[Guest guest]

Go for it -- loves going to the Orioles game with his daddy (they

were just there) - I don't think he cares about the game, but the music and

the bird

Another problem we have been coming into is Nick's obsession with

> checking

> out web pages whenever he sees " www " and wanting to call the 1-800 # the

>

> Pirates have. I think he thinks he will get to talk to a Pirate if he

> calls it.

> He keeps saying he wants to go to a Pirate game with DH. DH doesn't

> think he

> can handle a game -- not sure if it's Nick can't handle the game or DH

> can't

> handle Nick at a game.

>

> Well, this is long so I'll sign off now.

>

> Cari

>

>

>

>

[Guest guest]

Go for it -- loves going to the Orioles game with his daddy (they

were just there) - I don't think he cares about the game, but the music and

the bird

Another problem we have been coming into is Nick's obsession with

> checking

> out web pages whenever he sees " www " and wanting to call the 1-800 # the

>

> Pirates have. I think he thinks he will get to talk to a Pirate if he

> calls it.

> He keeps saying he wants to go to a Pirate game with DH. DH doesn't

> think he

> can handle a game -- not sure if it's Nick can't handle the game or DH

> can't

> handle Nick at a game.

>

> Well, this is long so I'll sign off now.

>

> Cari

>

>

>

>

[Guest guest]

I agree- take him to the game they dont even have to stay for the whole

thing. Dont you have the farm team in PA? we have the brooklyn cyclones here

and

they play pittsburg something all the time. We love cyclone games- they are

such fun- lots of music, a smaller stadium and lots of activities for the kids.

I would much rather go there then to see the Mets at Shea (went once- it was

hot, expensive, etc...) and wouldnt even attempt Yankee Stadium (although

has become a huge Yankee fan, while her brother and I remain true to the

mets).

Baseball is great entertainment for our kids- if you dont think that DH can

handle him alone, then why dont the 3 of you go if possible?

~ Mom to 14 DS and Diabetes Type 1 and 11 NYC

[Guest guest]

I agree- take him to the game they dont even have to stay for the whole

thing. Dont you have the farm team in PA? we have the brooklyn cyclones here

and

they play pittsburg something all the time. We love cyclone games- they are

such fun- lots of music, a smaller stadium and lots of activities for the kids.

I would much rather go there then to see the Mets at Shea (went once- it was

hot, expensive, etc...) and wouldnt even attempt Yankee Stadium (although

has become a huge Yankee fan, while her brother and I remain true to the

mets).

Baseball is great entertainment for our kids- if you dont think that DH can

handle him alone, then why dont the 3 of you go if possible?

~ Mom to 14 DS and Diabetes Type 1 and 11 NYC