Re: (unknown)

[Guest guest]

In a message dated 11/9/01 7:45:52 AM Pacific Standard Time,

dmorgan26347@... writes:

<< can anyone give me a email addy to contact yahoo.

everytime i sign on to yahoo at home, my computer

locks up. >>

Dawn... I have looked and looked tonight to find the email addy where I sent

my complaints.. I think they took it off or I'm just blind. They make it

really hard to complain.

Go to :

http://help.yahoo.com/help/groups/

They have a catagory that says:

" Why isn't there a single addy to complain to " Or something like this. When

I used that one it sent me to a page where I could write my complaint. It

didnt't do that tonight. LOL Maybe you will have better luck... I'll keep

looking...

hugs

[Guest guest]

In a message dated 11/9/01 7:45:52 AM Pacific Standard Time,

dmorgan26347@... writes:

<< can anyone give me a email addy to contact yahoo.

everytime i sign on to yahoo at home, my computer

locks up. >>

Dawn... I have looked and looked tonight to find the email addy where I sent

my complaints.. I think they took it off or I'm just blind. They make it

really hard to complain.

Go to :

http://help.yahoo.com/help/groups/

They have a catagory that says:

" Why isn't there a single addy to complain to " Or something like this. When

I used that one it sent me to a page where I could write my complaint. It

didnt't do that tonight. LOL Maybe you will have better luck... I'll keep

looking...

hugs

[Guest guest]

Amber and Carol,

Is your Mom on the Antibiotic because of a respiratory infection? Could

this be causing the breathlessness? I do remember you asking about this

before. Does she get short of breath with activity or is she short of

breath all of the time? I have shortness of breath with increased activity

and mine is just related to poor endurance from the RP-- or so we think!! I

have tracheal/laryngeal involvement with my RP so it makes sense to me. At

this point, there is nothing we can do about it. I hope your Mom feels

better soon!

Kathi

>From: arnoldamber@...

>Reply-To: Rpolychondritis

>To: Rpolychondritis

>Subject: (unknown)

>Date: Mon, 12 Nov 2001 18:53:40 -0000

>

>Hello,

>

>My mom wanted me to ask this question and I think that we have asked

>and it has been answered, but here it is.

>

>My mom was on 80 mgs of prednison and 150 mgs. of cytoxan. She was

>put on 160 mgs. of pred. for a day or two and dropped back to 80

>mgs. She has now been dropped from 80 mgs. to 60 mgs. of

>prednisone. This is good of course but she is experiencing this

>breathlessness again. She is congested and is on some antibiotic.

>All of her doctors are aware of her breathlessness. So is she to

>live with this, is this normal or what else could be done?

>

>She is now waiting her 30 days to find out what social security

>disability decided. Thank you for your advice. I believe that if

>she is denied this go around, we will check out an attorney.

>

>I personally am curious to see if there are any others with R.P. in

>Montana, North Dakota or Wyoming? I think it would be helpful to

>know who their doctors are.

>

>Also, Dr. Bunker from Seattle sent a questionaire to my mom. she was

>pleased, but does anyone know what they are looking for exactly. I

>mean, what do they suspect causes R.P. What does everyone here have

>in common? They say it is not heriditary. How do they know? I

>would like to read the transcript for this research. What do you all

>think?

>

>Thank you all.

>

>Amber & Carol

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

Amber and Carol,

Is your Mom on the Antibiotic because of a respiratory infection? Could

this be causing the breathlessness? I do remember you asking about this

before. Does she get short of breath with activity or is she short of

breath all of the time? I have shortness of breath with increased activity

and mine is just related to poor endurance from the RP-- or so we think!! I

have tracheal/laryngeal involvement with my RP so it makes sense to me. At

this point, there is nothing we can do about it. I hope your Mom feels

better soon!

Kathi

>From: arnoldamber@...

>Reply-To: Rpolychondritis

>To: Rpolychondritis

>Subject: (unknown)

>Date: Mon, 12 Nov 2001 18:53:40 -0000

>

>Hello,

>

>My mom wanted me to ask this question and I think that we have asked

>and it has been answered, but here it is.

>

>My mom was on 80 mgs of prednison and 150 mgs. of cytoxan. She was

>put on 160 mgs. of pred. for a day or two and dropped back to 80

>mgs. She has now been dropped from 80 mgs. to 60 mgs. of

>prednisone. This is good of course but she is experiencing this

>breathlessness again. She is congested and is on some antibiotic.

>All of her doctors are aware of her breathlessness. So is she to

>live with this, is this normal or what else could be done?

>

>She is now waiting her 30 days to find out what social security

>disability decided. Thank you for your advice. I believe that if

>she is denied this go around, we will check out an attorney.

>

>I personally am curious to see if there are any others with R.P. in

>Montana, North Dakota or Wyoming? I think it would be helpful to

>know who their doctors are.

>

>Also, Dr. Bunker from Seattle sent a questionaire to my mom. she was

>pleased, but does anyone know what they are looking for exactly. I

>mean, what do they suspect causes R.P. What does everyone here have

>in common? They say it is not heriditary. How do they know? I

>would like to read the transcript for this research. What do you all

>think?

>

>Thank you all.

>

>Amber & Carol

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

Sharon,

That's so true.

It's exactly what we try to do for my 3 children.Keep the cat sleeping.

Amitiés

Marie-pia

[Guest guest]

Sharon,

That's so true.

It's exactly what we try to do for my 3 children.Keep the cat sleeping.

Amitiés

Marie-pia

[Guest guest]

Dear Sharon, I printed out your letter to give to my doctor, if I ever decide

to see him again. It made so much sense. Thank You again. Sue M

[Guest guest]

Dear Sharon, I printed out your letter to give to my doctor, if I ever decide

to see him again. It made so much sense. Thank You again. Sue M

[Guest guest]

HI SHARON

I LOVE THIS, ITS THE BEST EXPLANATION I HAVE EVER

HEARD.

DAWN

--- Sharon wrote:

> This is to all of those who are only on prednisone,

> an still having

> problems. It is the analogy that my doctor thought

> of to explain RP.

>

> He likened it to a wild cat in a trash can. This

> cat cannot get out,

> so it is just wreaking havoc on the trash

> can....growling, spitting,

> hissing, and tearing up everything in its path. The

> object is to get

> the cat to go to sleep. To do that you start piling

> different things

> on top on the trash can. A piece of cardboard here,

> a bit of plywood

> there, some rocks, some bricks. Finally when you

> get the right

> combination of stuff piled on top, the cat gives up,

> lies down, and

> goes to sleep. Only when you are very sure that the

> cat is fast

> asleep do you begin taking things off the pile. You

> do it very, very

> slowly....only removing one thing at a time.

>

> This makes so much sense to me, and everytime Heidi

> says " get the RP

> in sleep mode " , I think of this analogy. I think

> those of us who are

> on, or have been on multiple medications can totally

> agree with

> this. It seems that just one medication does not

> put this cat (RP)

> to sleep!

>

> Recently, because I am doing so well on dialing back

> my prednisone, I

> decided to try cutting just 1/2 of one of my

> azathioprine per day.

> Nope! Definite no go! The cat tried to wake up,

> but I put him right

> back to sleep by going back on the full dose. I

> will not try

> removing two things at once again!

>

> Anyway, hope this encourages those of you who are

> struggling with

> your doctors for adequate treatment. This cat can

> be put to sleep,

> but you do have to pile on the medications!

>

> Take care all. Love, Sharon

>

>

__________________________________________________

[Guest guest]

HI SHARON

I LOVE THIS, ITS THE BEST EXPLANATION I HAVE EVER

HEARD.

DAWN

--- Sharon wrote:

> This is to all of those who are only on prednisone,

> an still having

> problems. It is the analogy that my doctor thought

> of to explain RP.

>

> He likened it to a wild cat in a trash can. This

> cat cannot get out,

> so it is just wreaking havoc on the trash

> can....growling, spitting,

> hissing, and tearing up everything in its path. The

> object is to get

> the cat to go to sleep. To do that you start piling

> different things

> on top on the trash can. A piece of cardboard here,

> a bit of plywood

> there, some rocks, some bricks. Finally when you

> get the right

> combination of stuff piled on top, the cat gives up,

> lies down, and

> goes to sleep. Only when you are very sure that the

> cat is fast

> asleep do you begin taking things off the pile. You

> do it very, very

> slowly....only removing one thing at a time.

>

> This makes so much sense to me, and everytime Heidi

> says " get the RP

> in sleep mode " , I think of this analogy. I think

> those of us who are

> on, or have been on multiple medications can totally

> agree with

> this. It seems that just one medication does not

> put this cat (RP)

> to sleep!

>

> Recently, because I am doing so well on dialing back

> my prednisone, I

> decided to try cutting just 1/2 of one of my

> azathioprine per day.

> Nope! Definite no go! The cat tried to wake up,

> but I put him right

> back to sleep by going back on the full dose. I

> will not try

> removing two things at once again!

>

> Anyway, hope this encourages those of you who are

> struggling with

> your doctors for adequate treatment. This cat can

> be put to sleep,

> but you do have to pile on the medications!

>

> Take care all. Love, Sharon

>

>

__________________________________________________

[Guest guest]

Wow Sharon, What a great way of putting that!!!!!

That really makes sense.

Thanks for the imput

Carol

--- Sharon wrote:

> This is to all of those who are only on prednisone,

> an still having

> problems. It is the analogy that my doctor thought

> of to explain RP.

>

> He likened it to a wild cat in a trash can. This

> cat cannot get out,

> so it is just wreaking havoc on the trash

> can....growling, spitting,

> hissing, and tearing up everything in its path. The

> object is to get

> the cat to go to sleep. To do that you start piling

> different things

> on top on the trash can. A piece of cardboard here,

> a bit of plywood

> there, some rocks, some bricks. Finally when you

> get the right

> combination of stuff piled on top, the cat gives up,

> lies down, and

> goes to sleep. Only when you are very sure that the

> cat is fast

> asleep do you begin taking things off the pile. You

> do it very, very

> slowly....only removing one thing at a time.

>

> This makes so much sense to me, and everytime Heidi

> says " get the RP

> in sleep mode " , I think of this analogy. I think

> those of us who are

> on, or have been on multiple medications can totally

> agree with

> this. It seems that just one medication does not

> put this cat (RP)

> to sleep!

>

> Recently, because I am doing so well on dialing back

> my prednisone, I

> decided to try cutting just 1/2 of one of my

> azathioprine per day.

> Nope! Definite no go! The cat tried to wake up,

> but I put him right

> back to sleep by going back on the full dose. I

> will not try

> removing two things at once again!

>

> Anyway, hope this encourages those of you who are

> struggling with

> your doctors for adequate treatment. This cat can

> be put to sleep,

> but you do have to pile on the medications!

>

> Take care all. Love, Sharon

>

>

__________________________________________________

[Guest guest]

Wow Sharon, What a great way of putting that!!!!!

That really makes sense.

Thanks for the imput

Carol

--- Sharon wrote:

> This is to all of those who are only on prednisone,

> an still having

> problems. It is the analogy that my doctor thought

> of to explain RP.

>

> He likened it to a wild cat in a trash can. This

> cat cannot get out,

> so it is just wreaking havoc on the trash

> can....growling, spitting,

> hissing, and tearing up everything in its path. The

> object is to get

> the cat to go to sleep. To do that you start piling

> different things

> on top on the trash can. A piece of cardboard here,

> a bit of plywood

> there, some rocks, some bricks. Finally when you

> get the right

> combination of stuff piled on top, the cat gives up,

> lies down, and

> goes to sleep. Only when you are very sure that the

> cat is fast

> asleep do you begin taking things off the pile. You

> do it very, very

> slowly....only removing one thing at a time.

>

> This makes so much sense to me, and everytime Heidi

> says " get the RP

> in sleep mode " , I think of this analogy. I think

> those of us who are

> on, or have been on multiple medications can totally

> agree with

> this. It seems that just one medication does not

> put this cat (RP)

> to sleep!

>

> Recently, because I am doing so well on dialing back

> my prednisone, I

> decided to try cutting just 1/2 of one of my

> azathioprine per day.

> Nope! Definite no go! The cat tried to wake up,

> but I put him right

> back to sleep by going back on the full dose. I

> will not try

> removing two things at once again!

>

> Anyway, hope this encourages those of you who are

> struggling with

> your doctors for adequate treatment. This cat can

> be put to sleep,

> but you do have to pile on the medications!

>

> Take care all. Love, Sharon

>

>

__________________________________________________

[Guest guest]

In a message dated 11/21/01 5:31:28 AM Pacific Standard Time,

cinnamon917@... writes:

<< will be 6 months without a flare on

saturday. >>

Oh Sandy that is the most wonderful news!!!! You have alot to be thankful

for tomorrow! Keep up the good work girl. We're all here for you and LOVE

to hear good news.

hugs

[Guest guest]

In a message dated 11/21/01 5:31:28 AM Pacific Standard Time,

cinnamon917@... writes:

<< will be 6 months without a flare on

saturday. >>

Oh Sandy that is the most wonderful news!!!! You have alot to be thankful

for tomorrow! Keep up the good work girl. We're all here for you and LOVE

to hear good news.

hugs

[Guest guest]

--- Dawn wrote:

> hi all

> i have a question over the weekend, i was having

> some

> minor trouble with my left ear

> and my jaw on the left, hurting and burning, then

> finally itching,its still

> sore but not swollen. last night my left eye

> started

> turning red and

> swelling, and it was having a lot of pain. >

>

Dear Dawn, I don't know, but if it doesn't improve I

think you should check with a doctor - whatever is

causing it, it doesn't sound great. Anything with the

eyes is worrying. Feel better, love Liz

> __________________________________________________

>

[Guest guest]

--- Dawn wrote:

> hi all

> i have a question over the weekend, i was having

> some

> minor trouble with my left ear

> and my jaw on the left, hurting and burning, then

> finally itching,its still

> sore but not swollen. last night my left eye

> started

> turning red and

> swelling, and it was having a lot of pain. >

>

Dear Dawn, I don't know, but if it doesn't improve I

think you should check with a doctor - whatever is

causing it, it doesn't sound great. Anything with the

eyes is worrying. Feel better, love Liz

> __________________________________________________

>

[Guest guest]

lol Dawn, Sounds just like all you blondes out there. lol no just kidding. Thanks for making me laugh!

love u

Lu

A plane is on its way to Montreal when a blonde in Economy Class gets up >and

>moves to the First Class section and sits down. The flight attendant >watches

[Guest guest]

lol Dawn, Sounds just like all you blondes out there. lol no just kidding. Thanks for making me laugh!

love u

Lu

A plane is on its way to Montreal when a blonde in Economy Class gets up >and

>moves to the First Class section and sits down. The flight attendant >watches

[Guest guest]

Dawn

Thanks for the laugh! That was a good one!LOL

Lots of Love

Glenda

>"I told her First Class isn't going to Montreal.>

[Guest guest]

Dawn

Thanks for the laugh! That was a good one!LOL

Lots of Love

Glenda

>"I told her First Class isn't going to Montreal.>

[Guest guest]

Dawn, I loved it ....think I will sing it this Christmas. LOL

hugs

claudia

[Guest guest]

Dawn, I loved it ....think I will sing it this Christmas. LOL

hugs

claudia

[Guest guest]

Hi,

Of course you are welcome here, most of the people on this list have

autonomic failure and we know many more people with it. This is a

diverse group anyway and we welcome anyone witha brain disorder or

questions about a brain disorder.

Take care, Bill Werre

=================================

iluvbigcats wrote:

>I have Pure Autonomic Failure not (MSA), but is it alright that I

>still join your group? Since my dotors told me I've have gotten more

>questions than ansewers. They tell me not to worry but I have

>already lost most of my stomach due to the nerves being dead. I have

>went through a lot sense 1993. I know my dotors are doing all they

>can, but some times it hard to see through the pain. No one seems to

>understand. I know my illness is supposed not to be life threating,

>then they tell me not do this and don't do that.I have lost my job,

>my freedom, and my independance. I take a lot of medecine just to

>keep going. they don't really like it when I go and look up for

>myself the ansewers they can't or don't want to give me. Thank you

>for letting me talk, let me know if I can stay. iluvbigcats

>

>

>If you do not wish to belong to shydrager, you may

>unsubscribe by sending a blank email to

>

>shydrager-unsubscribe

>

>

>

>

>

[Guest guest]

Hey big catluvver,

sure you are welcome in this group. PAF is more rare then MSA and although

more members do have PAF, they rarely post. A lot of symptoms of both

illnesses are the same, only the cause differs. But for treatment the basics

are the same.

Could you describe your symptoms, then, if they are the same as my wife Anne

has, I can tell you what she takes and what is doing her right and wrong.

The ferretluvver Timo.

(unknown)

> I have Pure Autonomic Failure not (MSA), but is it alright that I

> still join your group? Since my dotors told me I've have gotten more

> questions than ansewers. They tell me not to worry but I have

> already lost most of my stomach due to the nerves being dead. I have

> went through a lot sense 1993. I know my dotors are doing all they

> can, but some times it hard to see through the pain. No one seems to

> understand. I know my illness is supposed not to be life threating,

> then they tell me not do this and don't do that.I have lost my job,

> my freedom, and my independance. I take a lot of medecine just to

> keep going. they don't really like it when I go and look up for

> myself the ansewers they can't or don't want to give me. Thank you

> for letting me talk, let me know if I can stay. iluvbigcats

>

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>

[Guest guest]

You can do a web search for foundation garments. I did one and came up with

several sites...but as for not getting your hernia repaired, IMO, you ought

to at least get it checked and a recommendation from your doctor. I got two

small incisional hernias about 5 years after my surgery. My doctor

recommended repair, and told me if I didn't they'd get bigger in time. I

think I had a total of about 8 stitches to fix both of them. No lifting for

about a month to 6 weeks. And no more picking drunks up off the sidewalk. By

golly, if they could feel pain, they could get up on their own. If they

couldn't feel pain, I called an ambulance. If it's just a bump, get it fixed

before it gets to be a BIG bump, and you have things poking through that

you'd rather not. It really isn't that big a deal.

Jac

mailto:jholdaway@...

http://www.pictureitdigitaldesigns.com/

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