Hello

[Guest guest]

Hi Nanci,

As some of the others have said " push for the testing " My daughter

now 10 w/cf was diagnosed at 7 months. From day one I knew something

was wrong. I kept taking her to her pediatrician who told me she had

an infection in her throat but was too young for anitbiotics-then it

was that she had allergies but was too young to see an allergist-at

XMAS I brought my daughter to the local emergency room because she

was wheezing so badly and they diagnosed her with bronchiolitis but

never gave her antibiotic-she was seen by at least 4 different

doctors while in her oxygen tent and they also told me not to feed

her as they were cutting down on her amount. I didn't listen to them

about the feeding! I was breast feeding so I fed her as I normally

would THANK GOD!!! Anyway to make a long story short I finally had

had it with all these stupid drs. and called Childrens Hospital and

went to see a pulmonoligist and at the time I was ignorant about CF.

My daughter was diagnosed that day!I always wonder how much harm was

done by the dumb dr's that couldn't

figure it out and never gave her antibiotics and other meds. Oh by

the way after my daughter was diagnosed and I finally caught my

breath I called the dumb dr and reamed her-her answer was she just

can't lick every new baby she sees however they would be there for us

if we needed them. I can assure you I wouldn't take my dog to that

group of pediatricians and told them so. So hang in there and be

pushy because a mother knows her child best!!!!!!!!!!!!!!Also I have

a lot of respect for DR.'S that can say " I DON'T KNOW OR I'M NOT SURE "

J.

> Hi,

> I have been lurking for about a week or so, Torsten invited me.....

> I have a 9 month old baby (Philip) that has spent about 6 months of

his 9

> months with respertory infections and a cough that just never seems

to go

> away. He had problems with his marconium as a newborn, he went from

over

> 95th percentile in weight and hight to under 50 in both. If you

kiss him, it

> is like kissing a salt shaker.

> I am fighting with the Dr.'s to test him for something. We have

another

> appointment tomorrow. Thank you Lord he is doing better.

> They say that it can not be CF because he is my 7th child, and

since it is

> genetic there is no way. After reading your posts I wonder about my

4th

> child. He sounds so much like some of your children.

> I wanted to let you know how much your posts have blessed me! There

is more

> wisdom and comfort on this sight, you have really put so many

things in my

> life in perspective. I have cried over the grandson and prayed for

the sick.

> I have not posted because I do not know if Philip has CF or not

and I felt

> funny posting on the sight without knowing if I had a child with CF

or not.

>

> Have a great day!

> Nanci

[Guest guest]

Bev,

Just to clarify... I believe CF sweat testing should *only* be

performed at a CF Center because they perform so many of these

tests that the technicians know exactly what they're doing.

BUT, that doesn't mean I believe people with CF can *only* get the

best care from a CF Center. I know your granddaughter gets great care

at Duke U, but not all doctors and CF Centers are created equal.

Once was diagnosed with CF, we stayed with that third group of

pediatricians. The two peds in that office and their nursing staff

walked hand-in-hand with me every step of the way. They will always

be my heroes because they didn't have medical egos. We learned about

CF together and it was the best experience in the world for all of us

-- it made them so much more aware of the disease and never again did

they hesitate sending other patients for sweat testing.

One doctor had tears in his eyes after having to give a very

painful injection of Rocephin in each thigh. Those injections

lasted 14 days -- twice a day, an injection in each thigh. I would

catch the nurses turning away with tears in their eyes after also

giving these injections. That made them all the more committed to

staying on top of CF so wouldn't get sick. They didn't want to

have to go through that trauma just as much as they didn't want

to go through the trauma.

These pediatricians would do sputum cultures and nasal cultures, and

always discuss antibiotic peferences with me before writing the

prescription. If a sputum culture came back with PA and was

experiencing symptoms, they'd call me first, then call 's CF

doctor to discuss antibiotic options.

It didn't matter which child was sick. If either got sick, then all I

had to do was call the office and the receptionist would get them in

immediately. The docs figured that if was sick, then

might catch it -- they always looked at the " family picture. " I can't

say enough good things about how respectfully and compassionately this

medical group helped me take care of my children.

went to the CF Center for check ups about 3 -4 times a year. We

always hated it!! He'd be perfectly well, then get sick within a

couple days after a check up because of some bug he'd pick up in

clinic with all those other kids running around. I was so happy when

his CF doctor left the CF Center and opened a private practice.

then only went 3 times a year in a much, much cleaner, calmer

environment -- and we could finally get an appointment time that

wouldn't interfere with school.

So, while I believe testing *should* be done at a CF Center, I don't

believe that all CF Centers are the best place to be for routine care.

I know lots of you have phenomomenal doctors and nursing staff -- but

a lot of you don't. If you don't have a great CF specialist, then I

don't think parents should feel remorseful about leaving a CF Center

and finding a pediatric pulmonary specialist and other specialists --

even alternative medicine specialists -- who are willing to work with

them and learn right along side them.

I know Jen is lucky enough to also have a ped like the one's we had.

Everyone deserves to have doctors that are that committed and

compassionate and willing to go above and beyond -- and always look

at the big picture.

Kim

Mom to (23 with cf and asthma) and (20 asthma no cf)

> Hi,

> I have been lurking for about a week or so, Torsten invited me.....

I

> have a 9 month old baby (Philip) that has spent about 6 months of

> his 9 months with respertory infections and a cough that just never

> seems to go away. He had problems with his marconium as a newborn,

he

> went from over 95th percentile in weight and hight to under 50 in

> both. If you kiss him, it is like kissing a salt shaker.

>

> I am fighting with the Dr.'s to test him for something. We have

> another appointment tomorrow. Thank you Lord he is doing better.

They

> say that it can not be CF because he is my 7th child, and since it

is

> genetic there is no way. After reading your posts I wonder about my

> 4th child. He sounds so much like some of your children.

>

> I wanted to let you know how much your posts have blessed me! There

> is more wisdom and comfort on this sight, you have really put so

many

> things in my life in perspective. I have cried over the grandson and

> prayed for the sick.

>

> I have not posted because I do not know if Philip has CF or not and

> I felt funny posting on the sight without knowing if I had a child

> with CF or not.

>

> Have a great day!

> Nanci

>

>

> -------------------------------------------

> The opinions and information exchanged on this list should IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

> TREATMENTS.

>

> ------------------------------------

>

>

>

[Guest guest]

Dear KIM, Yes, I think that is what I said, or at least meant too.

ERIN went to her home town doc for regular care & to Duke once a year

for full check-up .tests, etc. She only went once when little & to her

local pad for sport check-ups, shots, stuff like that .She wasn't sick

any time for any other meds. Duke would call it in , like her pulmo

(after she was 15 years old & got her the vest.( as a trail thingy

records data for use of VEST with " well persons with CF " -I was very

upset when the locals wouldn't refer to the CF docs when they were doing

the surgery . The second one she shouldn't have needed. in fact

didn't.........They just kept giving her morphine for pain..compounding

the reason for the pain. Collapsed bowels. on top of her mecomiu iliues

from birth / ahesions..I think we are saying the same thing here.

Question your docs, try to be prepared & change if you feel it is

necessary. Yes, testing for CF thru the CF Center...............I most

likely didn't say it as you did exactly. But , I do agree with you

................Thanks

LOVE & HUGS, GRDM -BEV

Re: Hello

Bev,

Just to clarify... I believe CF sweat testing should *only* be

performed at a CF Center because they perform so many of these

tests that the technicians know exactly what they're doing.

BUT, that doesn't mean I believe people with CF can *only* get the

best care from a CF Center. I know your granddaughter gets great care

at Duke U, but not all doctors and CF Centers are created equal.

Once was diagnosed with CF, we stayed with that third group of

pediatricians. The two peds in that office and their nursing staff

walked hand-in-hand with me every step of the way. They will always

be my heroes because they didn't have medical egos. We learned about

CF together and it was the best experience in the world for all of us

-- it made them so much more aware of the disease and never again did

they hesitate sending other patients for sweat testing.

One doctor had tears in his eyes after having to give a very

painful injection of Rocephin in each thigh. Those injections

lasted 14 days -- twice a day, an injection in each thigh. I would

catch the nurses turning away with tears in their eyes after also

giving these injections. That made them all the more committed to

staying on top of CF so wouldn't get sick. They didn't want to

have to go through that trauma just as much as they didn't want

to go through the trauma.

These pediatricians would do sputum cultures and nasal cultures, and

always discuss antibiotic peferences with me before writing the

prescription. If a sputum culture came back with PA and was

experiencing symptoms, they'd call me first, then call 's CF

doctor to discuss antibiotic options.

It didn't matter which child was sick. If either got sick, then all I

had to do was call the office and the receptionist would get them in

immediately. The docs figured that if was sick, then

might catch it -- they always looked at the " family picture. " I can't

say enough good things about how respectfully and compassionately this

medical group helped me take care of my children.

went to the CF Center for check ups about 3 -4 times a year. We

always hated it!! He'd be perfectly well, then get sick within a

couple days after a check up because of some bug he'd pick up in

clinic with all those other kids running around. I was so happy when

his CF doctor left the CF Center and opened a private practice.

then only went 3 times a year in a much, much cleaner, calmer

environment -- and we could finally get an appointment time that

wouldn't interfere with school.

So, while I believe testing *should* be done at a CF Center, I don't

believe that all CF Centers are the best place to be for routine care. I

know lots of you have phenomomenal doctors and nursing staff -- but

a lot of you don't. If you don't have a great CF specialist, then I

don't think parents should feel remorseful about leaving a CF Center

and finding a pediatric pulmonary specialist and other specialists --

even alternative medicine specialists -- who are willing to work with

them and learn right along side them.

I know Jen is lucky enough to also have a ped like the one's we had.

Everyone deserves to have doctors that are that committed and

compassionate and willing to go above and beyond -- and always look

at the big picture.

Kim

Mom to (23 with cf and asthma) and (20 asthma no cf)

> Hi,

> I have been lurking for about a week or so, Torsten invited me.....

I

> have a 9 month old baby (Philip) that has spent about 6 months of

> his 9 months with respertory infections and a cough that just never

> seems to go away. He had problems with his marconium as a newborn,

he

> went from over 95th percentile in weight and hight to under 50 in

> both. If you kiss him, it is like kissing a salt shaker.

>

> I am fighting with the Dr.'s to test him for something. We have

> another appointment tomorrow. Thank you Lord he is doing better.

They

> say that it can not be CF because he is my 7th child, and since it

is

> genetic there is no way. After reading your posts I wonder about my

> 4th child. He sounds so much like some of your children.

>

> I wanted to let you know how much your posts have blessed me! There

> is more wisdom and comfort on this sight, you have really put so

many

> things in my life in perspective. I have cried over the grandson and

> prayed for the sick.

>

> I have not posted because I do not know if Philip has CF or not and

> I felt funny posting on the sight without knowing if I had a child

> with CF or not.

>

> Have a great day!

> Nanci

>

>

> -------------------------------------------

> The opinions and information exchanged on this list should IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

> TREATMENTS.

>

> ------------------------------------

>

>

>

[Guest guest]

Dear KIM, Yes, I think that is what I said, or at least meant too.

ERIN went to her home town doc for regular care & to Duke once a year

for full check-up .tests, etc. She only went once when little & to her

local pad for sport check-ups, shots, stuff like that .She wasn't sick

any time for any other meds. Duke would call it in , like her pulmo

(after she was 15 years old & got her the vest.( as a trail thingy

records data for use of VEST with " well persons with CF " -I was very

upset when the locals wouldn't refer to the CF docs when they were doing

the surgery . The second one she shouldn't have needed. in fact

didn't.........They just kept giving her morphine for pain..compounding

the reason for the pain. Collapsed bowels. on top of her mecomiu iliues

from birth / ahesions..I think we are saying the same thing here.

Question your docs, try to be prepared & change if you feel it is

necessary. Yes, testing for CF thru the CF Center...............I most

likely didn't say it as you did exactly. But , I do agree with you

................Thanks

LOVE & HUGS, GRDM -BEV

Re: Hello

Bev,

Just to clarify... I believe CF sweat testing should *only* be

performed at a CF Center because they perform so many of these

tests that the technicians know exactly what they're doing.

BUT, that doesn't mean I believe people with CF can *only* get the

best care from a CF Center. I know your granddaughter gets great care

at Duke U, but not all doctors and CF Centers are created equal.

Once was diagnosed with CF, we stayed with that third group of

pediatricians. The two peds in that office and their nursing staff

walked hand-in-hand with me every step of the way. They will always

be my heroes because they didn't have medical egos. We learned about

CF together and it was the best experience in the world for all of us

-- it made them so much more aware of the disease and never again did

they hesitate sending other patients for sweat testing.

One doctor had tears in his eyes after having to give a very

painful injection of Rocephin in each thigh. Those injections

lasted 14 days -- twice a day, an injection in each thigh. I would

catch the nurses turning away with tears in their eyes after also

giving these injections. That made them all the more committed to

staying on top of CF so wouldn't get sick. They didn't want to

have to go through that trauma just as much as they didn't want

to go through the trauma.

These pediatricians would do sputum cultures and nasal cultures, and

always discuss antibiotic peferences with me before writing the

prescription. If a sputum culture came back with PA and was

experiencing symptoms, they'd call me first, then call 's CF

doctor to discuss antibiotic options.

It didn't matter which child was sick. If either got sick, then all I

had to do was call the office and the receptionist would get them in

immediately. The docs figured that if was sick, then

might catch it -- they always looked at the " family picture. " I can't

say enough good things about how respectfully and compassionately this

medical group helped me take care of my children.

went to the CF Center for check ups about 3 -4 times a year. We

always hated it!! He'd be perfectly well, then get sick within a

couple days after a check up because of some bug he'd pick up in

clinic with all those other kids running around. I was so happy when

his CF doctor left the CF Center and opened a private practice.

then only went 3 times a year in a much, much cleaner, calmer

environment -- and we could finally get an appointment time that

wouldn't interfere with school.

So, while I believe testing *should* be done at a CF Center, I don't

believe that all CF Centers are the best place to be for routine care. I

know lots of you have phenomomenal doctors and nursing staff -- but

a lot of you don't. If you don't have a great CF specialist, then I

don't think parents should feel remorseful about leaving a CF Center

and finding a pediatric pulmonary specialist and other specialists --

even alternative medicine specialists -- who are willing to work with

them and learn right along side them.

I know Jen is lucky enough to also have a ped like the one's we had.

Everyone deserves to have doctors that are that committed and

compassionate and willing to go above and beyond -- and always look

at the big picture.

Kim

Mom to (23 with cf and asthma) and (20 asthma no cf)

> Hi,

> I have been lurking for about a week or so, Torsten invited me.....

I

> have a 9 month old baby (Philip) that has spent about 6 months of

> his 9 months with respertory infections and a cough that just never

> seems to go away. He had problems with his marconium as a newborn,

he

> went from over 95th percentile in weight and hight to under 50 in

> both. If you kiss him, it is like kissing a salt shaker.

>

> I am fighting with the Dr.'s to test him for something. We have

> another appointment tomorrow. Thank you Lord he is doing better.

They

> say that it can not be CF because he is my 7th child, and since it

is

> genetic there is no way. After reading your posts I wonder about my

> 4th child. He sounds so much like some of your children.

>

> I wanted to let you know how much your posts have blessed me! There

> is more wisdom and comfort on this sight, you have really put so

many

> things in my life in perspective. I have cried over the grandson and

> prayed for the sick.

>

> I have not posted because I do not know if Philip has CF or not and

> I felt funny posting on the sight without knowing if I had a child

> with CF or not.

>

> Have a great day!

> Nanci

>

>

> -------------------------------------------

> The opinions and information exchanged on this list should IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

> TREATMENTS.

>

> ------------------------------------

>

>

>

[Guest guest]

Hi Nanci,

I agreed with Kim - get the genetics book and hit the Doc over the head with

it! It amazes me how many stories I hear from this board of people having to

convince the Doc to test for CF. It even an easy test! I hope your son doesn't

have CF, but you are right to test him. Let us know how it goes at your appt.

tomorrow.

Keeley

mom to Leila, 4 months wcf, and Hadley, 2.5 yrs. nocf

Hello

Hi,

I have been lurking for about a week or so, Torsten invited me.....

I have a 9 month old baby (Philip) that has spent about 6 months of his 9

months with respertory infections and a cough that just never seems to go

away. He had problems with his marconium as a newborn, he went from over

95th percentile in weight and hight to under 50 in both. If you kiss him, it

is like kissing a salt shaker.

I am fighting with the Dr.'s to test him for something. We have another

appointment tomorrow. Thank you Lord he is doing better.

They say that it can not be CF because he is my 7th child, and since it is

genetic there is no way. After reading your posts I wonder about my 4th

child. He sounds so much like some of your children.

I wanted to let you know how much your posts have blessed me! There is more

wisdom and comfort on this sight, you have really put so many things in my

life in perspective. I have cried over the grandson and prayed for the sick.

I have not posted because I do not know if Philip has CF or not and I felt

funny posting on the sight without knowing if I had a child with CF or not.

Have a great day!

Nanci

[Guest guest]

Hi Nanci,

I agreed with Kim - get the genetics book and hit the Doc over the head with

it! It amazes me how many stories I hear from this board of people having to

convince the Doc to test for CF. It even an easy test! I hope your son doesn't

have CF, but you are right to test him. Let us know how it goes at your appt.

tomorrow.

Keeley

mom to Leila, 4 months wcf, and Hadley, 2.5 yrs. nocf

Hello

Hi,

I have been lurking for about a week or so, Torsten invited me.....

I have a 9 month old baby (Philip) that has spent about 6 months of his 9

months with respertory infections and a cough that just never seems to go

away. He had problems with his marconium as a newborn, he went from over

95th percentile in weight and hight to under 50 in both. If you kiss him, it

is like kissing a salt shaker.

I am fighting with the Dr.'s to test him for something. We have another

appointment tomorrow. Thank you Lord he is doing better.

They say that it can not be CF because he is my 7th child, and since it is

genetic there is no way. After reading your posts I wonder about my 4th

child. He sounds so much like some of your children.

I wanted to let you know how much your posts have blessed me! There is more

wisdom and comfort on this sight, you have really put so many things in my

life in perspective. I have cried over the grandson and prayed for the sick.

I have not posted because I do not know if Philip has CF or not and I felt

funny posting on the sight without knowing if I had a child with CF or not.

Have a great day!

Nanci

[Guest guest]

Hi Nanci,

I agreed with Kim - get the genetics book and hit the Doc over the head with

it! It amazes me how many stories I hear from this board of people having to

convince the Doc to test for CF. It even an easy test! I hope your son doesn't

have CF, but you are right to test him. Let us know how it goes at your appt.

tomorrow.

Keeley

mom to Leila, 4 months wcf, and Hadley, 2.5 yrs. nocf

Hello

Hi,

I have been lurking for about a week or so, Torsten invited me.....

I have a 9 month old baby (Philip) that has spent about 6 months of his 9

months with respertory infections and a cough that just never seems to go

away. He had problems with his marconium as a newborn, he went from over

95th percentile in weight and hight to under 50 in both. If you kiss him, it

is like kissing a salt shaker.

I am fighting with the Dr.'s to test him for something. We have another

appointment tomorrow. Thank you Lord he is doing better.

They say that it can not be CF because he is my 7th child, and since it is

genetic there is no way. After reading your posts I wonder about my 4th

child. He sounds so much like some of your children.

I wanted to let you know how much your posts have blessed me! There is more

wisdom and comfort on this sight, you have really put so many things in my

life in perspective. I have cried over the grandson and prayed for the sick.

I have not posted because I do not know if Philip has CF or not and I felt

funny posting on the sight without knowing if I had a child with CF or not.

Have a great day!

Nanci

[Guest guest]

Hi Sarajane,

I'm sorry for your problems, but I did want to send a short message that

there are extremely few " work at home " activities that would provide much

income. And, most importantly, there are many scams for " work at home'

activities. Most of the scams involve taking some of " your " money. Please be

very careful in this area. Most successful workers from home involve a unique

and usually very high skill level.

You can cut diamonds at home but very few of us know how to cut a diamond.

Best wishes, Poncho - GA

[Guest guest]

Hello Poncho,

Thanks for the message and yes I know all to well about the scams.

I have fallen for a few and tried them over the past 2 years, but all

were scams. The newest scam I have seen going around is one

where someone wants a bank account so they can transferr large

amounts of money into it from another country. Lately I have been

getting many of these. I do not try these. I know there must be true

jobs that can be done from home as Blue Cross/Blue Sheild has

what they referr to as cottage jobs that are done from home. The

only problem is they hire internally for these positions and do not

look outside the company. My biggest complaint is that Taking

care of my husband is a full time job itself and I want to do that

without society stressing us out about it! My main focus is to

improve his quality of life and help him stay as healthy as possible!

I do thank you for responding and will continue to watch the

message board. I am so happy we have found someplace to get

information and just talk to others who are going through the same

thing we are. For so long we felt so alone and lost. Only those that

have or are going through this disease can understand what we are

dealing with. We really Thank God that we found you! and that this

website is here!

God Bless you and all who are a part of this site!

Sincerely,

Ruby

To: pancreatitis

From: poncho9191@...

Date sent: Sun, 19 Jan 2003 12:38:33 EST

Subject: Re: Hello

Send reply to: pancreatitis

[ Double-click this line for list subscription options ]

Hi Sarajane,

I'm sorry for your problems, but I did want to send a short message

that

there are extremely few " work at home " activities that would

provide much

income. And, most importantly, there are many scams for " work at

home'

activities. Most of the scams involve taking some of " your " money.

Please be

very careful in this area. Most successful workers from home

involve a unique

and usually very high skill level.

You can cut diamonds at home but very few of us know how to cut

a diamond.

Best wishes, Poncho - GA

[Guest guest]

Hello Poncho,

Thanks for the message and yes I know all to well about the scams.

I have fallen for a few and tried them over the past 2 years, but all

were scams. The newest scam I have seen going around is one

where someone wants a bank account so they can transferr large

amounts of money into it from another country. Lately I have been

getting many of these. I do not try these. I know there must be true

jobs that can be done from home as Blue Cross/Blue Sheild has

what they referr to as cottage jobs that are done from home. The

only problem is they hire internally for these positions and do not

look outside the company. My biggest complaint is that Taking

care of my husband is a full time job itself and I want to do that

without society stressing us out about it! My main focus is to

improve his quality of life and help him stay as healthy as possible!

I do thank you for responding and will continue to watch the

message board. I am so happy we have found someplace to get

information and just talk to others who are going through the same

thing we are. For so long we felt so alone and lost. Only those that

have or are going through this disease can understand what we are

dealing with. We really Thank God that we found you! and that this

website is here!

God Bless you and all who are a part of this site!

Sincerely,

Ruby

To: pancreatitis

From: poncho9191@...

Date sent: Sun, 19 Jan 2003 12:38:33 EST

Subject: Re: Hello

Send reply to: pancreatitis

[ Double-click this line for list subscription options ]

Hi Sarajane,

I'm sorry for your problems, but I did want to send a short message

that

there are extremely few " work at home " activities that would

provide much

income. And, most importantly, there are many scams for " work at

home'

activities. Most of the scams involve taking some of " your " money.

Please be

very careful in this area. Most successful workers from home

involve a unique

and usually very high skill level.

You can cut diamonds at home but very few of us know how to cut

a diamond.

Best wishes, Poncho - GA

[Guest guest]

Hello Poncho,

Thanks for the message and yes I know all to well about the scams.

I have fallen for a few and tried them over the past 2 years, but all

were scams. The newest scam I have seen going around is one

where someone wants a bank account so they can transferr large

amounts of money into it from another country. Lately I have been

getting many of these. I do not try these. I know there must be true

jobs that can be done from home as Blue Cross/Blue Sheild has

what they referr to as cottage jobs that are done from home. The

only problem is they hire internally for these positions and do not

look outside the company. My biggest complaint is that Taking

care of my husband is a full time job itself and I want to do that

without society stressing us out about it! My main focus is to

improve his quality of life and help him stay as healthy as possible!

I do thank you for responding and will continue to watch the

message board. I am so happy we have found someplace to get

information and just talk to others who are going through the same

thing we are. For so long we felt so alone and lost. Only those that

have or are going through this disease can understand what we are

dealing with. We really Thank God that we found you! and that this

website is here!

God Bless you and all who are a part of this site!

Sincerely,

Ruby

To: pancreatitis

From: poncho9191@...

Date sent: Sun, 19 Jan 2003 12:38:33 EST

Subject: Re: Hello

Send reply to: pancreatitis

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Hi Sarajane,

I'm sorry for your problems, but I did want to send a short message

that

there are extremely few " work at home " activities that would

provide much

income. And, most importantly, there are many scams for " work at

home'

activities. Most of the scams involve taking some of " your " money.

Please be

very careful in this area. Most successful workers from home

involve a unique

and usually very high skill level.

You can cut diamonds at home but very few of us know how to cut

a diamond.

Best wishes, Poncho - GA

[Guest guest]

I wonder if you are related to me...LOL. My family STILL tells me I'm

a hypochondriac. I have gone through over 8 different doctors...they

didn't know as much about Lupus as I did (and about 3 of them

considered themselves Lupus " specialists " ...yea right). It takes time

to find THE ONE. You can come here to vent through and ask for

advise...someone " usually " is always here. I'm 36 yrs. old with CNS

involvement too (and 2 children; Glindon (boy) 17/Lacey (girl) 7). I

live in Central California. Are you having seizures? I can them now

but they aren't like fish flopping seizures though...I just sit down

(or lay down) and I go out. They last anywhere from a few minutes to a

few hours. I have them about 2-3 times a week. After I come out of

these episodes I'm sooooo weak. My eyes are fixed and dialated. I

can't move or speak and I have no response. Anytime my " episodes " last

longer then 30 mins. then my husband is supposed to call an ambulance.

Everytime his does though the EMT/hospital/etc. think I overdosed and

treat me like a drug addict (stupid, uninformed people). There are

only a few of us with CNS involvement. I'm the only one that has these

kind of " seizures. " Welcome home.

Blessings,

In Cali

> Hello, my name is Dawn Marie, I'm 37 with 3 beautiful children, and

I'm married to the nicest man you could ever meet. You'd almost have

to be to put up with me with all my bad spells. I live in Missouri

and the doctors around here don't seem to have a clue about autoimmune

diseases. I am not officially diagnosed with Lupus yet but they are

saying that they believe that's the pattern I am beginning to follow.

This has become very frustrating for my husband and myself and we

have been in search for the right doctor but do not believe that he or

she exists in Missouri. We have considered finding a place that

specializes in autoimmune diseases even if we'd have to go out of

state but we'd have to save up a little money before we could do such

a thing, unless I were to find some type of research program. So if

anyone has any suggestions I'd welcome them. Another reason my

husband and I get so upset is because we've learned that everyone,

including family members, are referring to me as a hypochondriac.

This has us so upset that we want little to do with any one any more.

I'm very sick right now; Can't seem to make my fever go away. And

if this is Lupus then there is CNS involvement, for me anyway. It's

all so confusing; We just want some answers.

>

> Dawn Marie

[Guest guest]

I wonder if you are related to me...LOL. My family STILL tells me I'm

a hypochondriac. I have gone through over 8 different doctors...they

didn't know as much about Lupus as I did (and about 3 of them

considered themselves Lupus " specialists " ...yea right). It takes time

to find THE ONE. You can come here to vent through and ask for

advise...someone " usually " is always here. I'm 36 yrs. old with CNS

involvement too (and 2 children; Glindon (boy) 17/Lacey (girl) 7). I

live in Central California. Are you having seizures? I can them now

but they aren't like fish flopping seizures though...I just sit down

(or lay down) and I go out. They last anywhere from a few minutes to a

few hours. I have them about 2-3 times a week. After I come out of

these episodes I'm sooooo weak. My eyes are fixed and dialated. I

can't move or speak and I have no response. Anytime my " episodes " last

longer then 30 mins. then my husband is supposed to call an ambulance.

Everytime his does though the EMT/hospital/etc. think I overdosed and

treat me like a drug addict (stupid, uninformed people). There are

only a few of us with CNS involvement. I'm the only one that has these

kind of " seizures. " Welcome home.

Blessings,

In Cali

> Hello, my name is Dawn Marie, I'm 37 with 3 beautiful children, and

I'm married to the nicest man you could ever meet. You'd almost have

to be to put up with me with all my bad spells. I live in Missouri

and the doctors around here don't seem to have a clue about autoimmune

diseases. I am not officially diagnosed with Lupus yet but they are

saying that they believe that's the pattern I am beginning to follow.

This has become very frustrating for my husband and myself and we

have been in search for the right doctor but do not believe that he or

she exists in Missouri. We have considered finding a place that

specializes in autoimmune diseases even if we'd have to go out of

state but we'd have to save up a little money before we could do such

a thing, unless I were to find some type of research program. So if

anyone has any suggestions I'd welcome them. Another reason my

husband and I get so upset is because we've learned that everyone,

including family members, are referring to me as a hypochondriac.

This has us so upset that we want little to do with any one any more.

I'm very sick right now; Can't seem to make my fever go away. And

if this is Lupus then there is CNS involvement, for me anyway. It's

all so confusing; We just want some answers.

>

> Dawn Marie

[Guest guest]

I wonder if you are related to me...LOL. My family STILL tells me I'm

a hypochondriac. I have gone through over 8 different doctors...they

didn't know as much about Lupus as I did (and about 3 of them

considered themselves Lupus " specialists " ...yea right). It takes time

to find THE ONE. You can come here to vent through and ask for

advise...someone " usually " is always here. I'm 36 yrs. old with CNS

involvement too (and 2 children; Glindon (boy) 17/Lacey (girl) 7). I

live in Central California. Are you having seizures? I can them now

but they aren't like fish flopping seizures though...I just sit down

(or lay down) and I go out. They last anywhere from a few minutes to a

few hours. I have them about 2-3 times a week. After I come out of

these episodes I'm sooooo weak. My eyes are fixed and dialated. I

can't move or speak and I have no response. Anytime my " episodes " last

longer then 30 mins. then my husband is supposed to call an ambulance.

Everytime his does though the EMT/hospital/etc. think I overdosed and

treat me like a drug addict (stupid, uninformed people). There are

only a few of us with CNS involvement. I'm the only one that has these

kind of " seizures. " Welcome home.

Blessings,

In Cali

> Hello, my name is Dawn Marie, I'm 37 with 3 beautiful children, and

I'm married to the nicest man you could ever meet. You'd almost have

to be to put up with me with all my bad spells. I live in Missouri

and the doctors around here don't seem to have a clue about autoimmune

diseases. I am not officially diagnosed with Lupus yet but they are

saying that they believe that's the pattern I am beginning to follow.

This has become very frustrating for my husband and myself and we

have been in search for the right doctor but do not believe that he or

she exists in Missouri. We have considered finding a place that

specializes in autoimmune diseases even if we'd have to go out of

state but we'd have to save up a little money before we could do such

a thing, unless I were to find some type of research program. So if

anyone has any suggestions I'd welcome them. Another reason my

husband and I get so upset is because we've learned that everyone,

including family members, are referring to me as a hypochondriac.

This has us so upset that we want little to do with any one any more.

I'm very sick right now; Can't seem to make my fever go away. And

if this is Lupus then there is CNS involvement, for me anyway. It's

all so confusing; We just want some answers.

>

> Dawn Marie

[Guest guest]

My name is Tawny and I am 30 years old with PSC. I was diagnosed with PSC about

12 years ago. I signed up for the conference and found this site and thought I

would join. I haven't really every talked with anyone else with PSC so this is

really cool. I also have/had Ulcerative Colitis and had my large intestine

removed about 6 years ago and would do it again in a heart beat! As for the

PSC, I was diagnosed by a gallbladder attack and then they removed it and

discovered the PSC. I have had pretty good lab results for the most party,

minus a couple handfull of times. I do get frequent liver stones and holes in

the bile ducts. I recently found out that it is progressing and I have to have

an ERCP in 2 weeks to see how much. I haven't had progression ever so this will

be an interesting couple of weeks. I just noticed yesterday my eyes are a

slight pale yellow, I haven't had yellow eyes in a long time.

Anyways, someone was talking about different signs and symptoms and I read a

couple of you have lost weight or vomit a lot. Sorry to those of you with that,

as that stuff sucks. I am on steriods frequently as I also have Arthritis

pretty bad and that as you all know i'm sure makes you gain weight. I'm hungry

all the time!!!!!!! I think my husband thinks i'm crazy for eating so much. Oh

well!

So that is my story and I would love to chat.

Tawny, PSC for 12 years

Chicago

[Guest guest]

Hi Tawny,

It's nice to meet you. How fun that will be for you to meet everyone at the

conference. I have not been able to go yet. Always something, kids, grandkids,

health, or money. My liver disease was diagnosed after my gall bladder came out,

but it took years for them to figure it out. I never had stones in my gall

bladder or any where else. I should knock on wood. I seem to be getting all

sorts of new diseases.

Have you not had any other problems with you health? What do they do when you

get stones? I suffer from terrible itching (nothing helps mine), extreme

fatigue, low weight, edema and ascities (responding to diuretics), nausea, then

a bunch of problems related to some of my other diseases. What kind of arthritis

do you have? RA? Do you take DMARDs for it or just prednisone? I hate

Prednisone. I was on it for a year to partly to control UC and partly because

they originally misdx me with Autoimmune Hepatitis. It was very, very difficult

for me to wean off of it. I gained about 25-30 pounds. I hated all the extreme

mood swings. I would get so angry and then start crying over nothing.

I look forward to getting to know you better, take care, Cheryl ID 50,

PSC/UC/RP/undx kidney problem

Hello

> My name is Tawny and I am 30 years old with PSC. I was diagnosed with PSC

about 12 years ago. I signed up for the conference and found this site and

thought I would join.

>

> So that is my story and I would love to chat.

> Tawny, PSC for 12 years

> Chicago

>

>

>

>

>

[Guest guest]

Hi Tawny,

It's nice to meet you. How fun that will be for you to meet everyone at the

conference. I have not been able to go yet. Always something, kids, grandkids,

health, or money. My liver disease was diagnosed after my gall bladder came out,

but it took years for them to figure it out. I never had stones in my gall

bladder or any where else. I should knock on wood. I seem to be getting all

sorts of new diseases.

Have you not had any other problems with you health? What do they do when you

get stones? I suffer from terrible itching (nothing helps mine), extreme

fatigue, low weight, edema and ascities (responding to diuretics), nausea, then

a bunch of problems related to some of my other diseases. What kind of arthritis

do you have? RA? Do you take DMARDs for it or just prednisone? I hate

Prednisone. I was on it for a year to partly to control UC and partly because

they originally misdx me with Autoimmune Hepatitis. It was very, very difficult

for me to wean off of it. I gained about 25-30 pounds. I hated all the extreme

mood swings. I would get so angry and then start crying over nothing.

I look forward to getting to know you better, take care, Cheryl ID 50,

PSC/UC/RP/undx kidney problem

Hello

> My name is Tawny and I am 30 years old with PSC. I was diagnosed with PSC

about 12 years ago. I signed up for the conference and found this site and

thought I would join.

>

> So that is my story and I would love to chat.

> Tawny, PSC for 12 years

> Chicago

>

>

>

>

>