hello again

[Guest guest]

Sandy N, Welcome to the group. Sorry I missed welcoming you, was away for a

week. Sorry that you need us, but glad you found us.

First of all, Heidi is right, the stuff you read is outdated and I think when

we all read it for the first time we were scared to death and felt we were

given the death sentence.

RP is controlable..

As you will soon see, we are all different. Flares strike us in different

places and we all take different medications. Just depends on what works for

you. Sounds like you have a pretty good dr. who could dx it so fast.

I am 49, married 26 years have 3 daughters and a grandaughter. I live in

Calif.

My flares are with my ears, nose and ribs. I was dx in 1999 but had my first

flare in 1998. I have been on pred since may of 1999. Please just ask all

the question you want. If you send your address and phone #, I will add you

to Heidi's list and mail you a copy. It won't take you long to get to know

us all. I thought I never would, but it really gets easy after a while. We

are just one big family. Someone is always here for you.

To get to chat go to http://groups.yahoo.com/group/Rpolychondritis

I think you will have to sign up and use a pass word. If that doesn't work

just post again and someone will give you better instructions. LOL

You can always go to the group site and click on members. There will be a

list of all members and our e mail address.

Just know that this is a wonderful group and you will receive all the support

that you need and information that will be coming out your ears. You will

be able to educate your doctors. LOL

Glad to have you with us.

hugs

C

[Guest guest]

Hi all,

I guess I'm still not sure how this all works. I

missed everyone in chat on Friday night. Hope I went

to the right place although I was a bit late. I have

been in the club site and clicked on members names

that are online but somehow can't connect. What am I

doing wrong?

Heidi said I should tell a little about myself so here

goes. I'm a 50 year old female, married to a

wonderful man, have 2 children and 1 granddaughter. I

was officially diagnosed with RP last Wednesday so am

a bit depressed. Guess I always thought somebody made

a major mistake. Other than RP, my Rheumatologist

says I'm in excellent health and do hope that makes a

difference.

All I know of this disease is the horrible stuff I've

read on-line when I typed in relapsing polychondritis.

However, Heidi says this is very outdated and don't

rely too much on this info. My first flare up was my

right ear on Jan 25, my second was my left ear on Feb

25 and my third was on May 24, this time my nose.

So, as to not take up too much space in e-mail I will

close. If anyone can tell me how to get into chat or

how to contact other members on-line it would sure

help.

Sandy N.

__________________________________________________

[Guest guest]

claudia,

thank you for answering so soon. i clicked on the

link you gave me and it says to convert my e-mail

address i need an authorization code. how do i get

that? and thanks so much for the support. its hard

to find someone to talk to about this as no one really

wants to discuss it.

--- RCColloran@... wrote:

> Sandy N, Welcome to the group. Sorry I missed

> welcoming you, was away for a

> week. Sorry that you need us, but glad you found

> us.

>

> First of all, Heidi is right, the stuff you read is

> outdated and I think when

> we all read it for the first time we were scared to

> death and felt we were

> given the death sentence.

> RP is controlable..

>

> As you will soon see, we are all different. Flares

> strike us in different

> places and we all take different medications. Just

> depends on what works for

> you. Sounds like you have a pretty good dr. who

> could dx it so fast.

>

> I am 49, married 26 years have 3 daughters and a

> grandaughter. I live in

> Calif.

> My flares are with my ears, nose and ribs. I was dx

> in 1999 but had my first

> flare in 1998. I have been on pred since may of

> 1999. Please just ask all

> the question you want. If you send your address and

> phone #, I will add you

> to Heidi's list and mail you a copy. It won't take

> you long to get to know

> us all. I thought I never would, but it really gets

> easy after a while. We

> are just one big family. Someone is always here for

> you.

>

> To get to chat go to

> http://groups.yahoo.com/group/Rpolychondritis

> I think you will have to sign up and use a pass

> word. If that doesn't work

> just post again and someone will give you better

> instructions. LOL

>

> You can always go to the group site and click on

> members. There will be a

> list of all members and our e mail address.

>

> Just know that this is a wonderful group and you

> will receive all the support

> that you need and information that will be coming

> out your ears. You will

> be able to educate your doctors. LOL

>

> Glad to have you with us.

>

> hugs

> C

>

__________________________________________________

[Guest guest]

In a message dated 6/3/01 5:16:59 PM Pacific Daylight Time,

cinnamon917@... writes:

<< it says to convert my e-mail

address i need an authorization code. >>

Sandy, LOL I have no idea... Anyone out there..HELP!!! Martha who would

know is gone for a few days I think. , do you know!! Gosh, I'm so dumb

when it comes to computers. LOL Did you click on sign up and give a

password? Maybe Martha has to approve you, I don't know. I'll do some

checking...

Sandy, I am home most of the time, if you want to go to chat just to talk try

posting me and seeing if I'm on line or just pick a time and day and we can

see who shows up. First we have to get you there. LOL

So glad you have joined us. Can't wait to get to know you better.

hugs

[Guest guest]

Sandy N.

So glad you found us. You are very fortunate that your dr. found the RP so

fast. Also if you are healthy and only have RP that is a big plus too. Or so

they say anyway. I too only have RP none of the secondary stuff. They have

been able to control my RP with medusa. Sounds like you have a good dr. for him

to have found it so fast! There is hope for some doctors!LOL

If you would like to go to chat at the group site or on line when I am on just

let me know I would be glad to go to talk! You are not alone that is for sure!

Our numbers are in the 200's or are getting pretty close.

Take care and try not to worry. Worry, stress and other things make the RP

worse!

Sending good thoughts and prayers your way!

Lots of Love

Glenda

hello again

Hi all,

I guess I'm still not sure how this all works. I

missed everyone in chat on Friday night. Hope I went

to the right place although I was a bit late. I have

been in the club site and clicked on members names

that are online but somehow can't connect. What am I

doing wrong?

Heidi said I should tell a little about myself so here

goes. I'm a 50 year old female, married to a

wonderful man, have 2 children and 1 granddaughter. I

was officially diagnosed with RP last Wednesday so am

a bit depressed. Guess I always thought somebody made

a major mistake. Other than RP, my Rheumatologist

says I'm in excellent health and do hope that makes a

difference.

All I know of this disease is the horrible stuff I've

read on-line when I typed in relapsing polychondritis.

However, Heidi says this is very outdated and don't

rely too much on this info. My first flare up was my

right ear on Jan 25, my second was my left ear on Feb

25 and my third was on May 24, this time my nose.

So, as to not take up too much space in e-mail I will

close. If anyone can tell me how to get into chat or

how to contact other members on-line it would sure

help.

Sandy N.

__________________________________________________

[Guest guest]

--- sl n cinnamon917@...> wrote:

> Hi all,

> Heidi said I should tell a little about myself so

> here

> goes. I'm a 50 year old female, married to a

> wonderful man, have 2 children and 1 granddaughter.

> I

> was officially diagnosed with RP last Wednesday so

> am

> a bit depressed. Guess I always thought somebody

> made

> a major mistake. Other than RP, my Rheumatologist

> says I'm in excellent health and do hope that makes

> a

> difference.

> Sandy N.

>

Hi Sandy,

I just got my official dx on May 25th, so we are both

really new to having RP, officially at least. I think

I have had it for about 5 years. Had a major ear

flare in Jan. 2000, and have been under my doctors

care since then.

I am 56 years old, married for almost 38 years, mother

of 5, grandmother of 5. (well, the 5th one is due in

August)

The depression upon diagnosis is, I think, very

normal. Even though I knew that I had RP, when the

doctor finally admitted it, it was a very scary

moment. Just trust your doctor, if you have a good

one. You will learn tons of stuff from this group

also.

Take care, and keep posting.

Sharon

=====

__________________________________________________

[Guest guest]

Hi Sharon,

Lucy here, I too, was diagnosed in Jan. 2000. I am also 56 years old! You

would by any chance have an Aug. 26th birthday, would you? That would

really be weird. To top it off, I have five grandchildren (by my two

children) plus a very sweet stepgrandchild,,,,,,of course he is really my

6th grandchild, I do not make an issue of the fact that he is not my son's

child. He calls me Meme too. My children are finished having babies. They

have three each now.

What do you take for RP? I am on Dapsone, 50mg a day. Right now, I am not

having anything more than the usual respiratory, joint aches, muscle aches,

etc. as far as the RP is concerned. I take Aleve other than Vioxx.

I also have steroid induced Diabetes! I take one pill a day for that. I

was on the insulin but my sugar dropped when I got off of the prednisone.

Please drop me a line. Where do you live? I am from Ala. originally. I

live in North Carolina now after 27 or so years.

Take care, Love and Prayers, Lucy (Lulu)

Re: hello again

>

> --- sl n cinnamon917@...> wrote:

> > Hi all,

>

> > Heidi said I should tell a little about myself so

> > here

> > goes. I'm a 50 year old female, married to a

> > wonderful man, have 2 children and 1 granddaughter.

> > I

> > was officially diagnosed with RP last Wednesday so

> > am

> > a bit depressed. Guess I always thought somebody

> > made

> > a major mistake. Other than RP, my Rheumatologist

> > says I'm in excellent health and do hope that makes

> > a

> > difference.

>

> > Sandy N.

> >

> Hi Sandy,

>

> I just got my official dx on May 25th, so we are both

> really new to having RP, officially at least. I think

> I have had it for about 5 years. Had a major ear

> flare in Jan. 2000, and have been under my doctors

> care since then.

>

> I am 56 years old, married for almost 38 years, mother

> of 5, grandmother of 5. (well, the 5th one is due in

> August)

>

> The depression upon diagnosis is, I think, very

> normal. Even though I knew that I had RP, when the

> doctor finally admitted it, it was a very scary

> moment. Just trust your doctor, if you have a good

> one. You will learn tons of stuff from this group

> also.

>

> Take care, and keep posting.

>

> Sharon

>

>

> =====

>

>

> __________________________________________________

>

[Guest guest]

--- Lucy L10@...> wrote:

> Hi Sharon,

>

> Lucy here, I too, was diagnosed in Jan. 2000. I am

> also 56 years old! You

> would by any chance have an Aug. 26th birthday,

> would you? That would

> really be weird. To top it off, I have five

> grandchildren (by my two

> children) plus a very sweet stepgrandchild,,,,,,of

> course he is really my

> 6th grandchild, I do not make an issue of the fact

> that he is not my son's

> child. He calls me Meme too. My children are

> finished having babies. They

> have three each now.

>

> What do you take for RP? I am on Dapsone, 50mg a

> day. Right now, I am not

> having anything more than the usual respiratory,

> joint aches, muscle aches,

> etc. as far as the RP is concerned. I take Aleve

> other than Vioxx.

>

> I also have steroid induced Diabetes! I take one

> pill a day for that. I

> was on the insulin but my sugar dropped when I got

> off of the prednisone.

>

> Please drop me a line. Where do you live? I am

> from Ala. originally. I

> live in North Carolina now after 27 or so years.

>

Hi Lucy,

Hey, I don't have an August 26th birthday, but our

anniversary is August 25th. Close enough! My

birthday is 11-11, an Armistice Day baby. That's what

it was called when I was born and for most of my

growing up years.

One of our grandchildren is also a step-grandchild

also. And I am his gran just as I am to all the rest

of the kidlets. My birth children will be finished

having children when Logan is born in August. Then we

still have an unmarried 23 year old son, and a 14 year

old son. By the time they have kids, I'll be too old

to babysit for them!

For RP I take 150 mg of Azathioprine, 15 mg

prednisone, and 20 mg of Arava for the joint pain and

disease. I just tried cutting my prednisone, and that

my ears did not like that at all. Called my rheumy

and he said just bump it on back up to 15 and keep it

there until I see him on the 19th.

You mentioned respiratory problems. How does that

manifest in you? My doctor told me to always be

aware, and pay attention to what my throat is doing

when my ears are flaring. I just don't really know

what to watch for. Last night I was having such bad

secretions in the back of my throat that I was

literally gagging. When I get too low on prednisone,

I get this dry non-productive cough. Other than that,

I don't see any involvement. Would appreciate your

input, along with the input of anyone else who has

these problems.

Sorry that you got diabetes. That is a nasty thing to

have. My dad was diabetic!

I am originally from California, born there and lived

there for the first 20 years of my life. We moved to

Oregon in 1966 and have been here every since. Never

want to live anywhere else!

Thanks for writing. I enjoyed hearing from you! Hope

your day is going well.

Love, Sharon

=====

__________________________________________________

[Guest guest]

In a message dated 06/03/2001 1:26:01 PM Central Daylight Time,

cinnamon917@... writes:

<< All I know of this disease is the horrible stuff I've

read on-line when I typed in relapsing polychondritis.

However, Heidi says this is very outdated and don't

rely too much on this info. My first flare up was my >>

Sandy, Heidi is right, all that info is outdated! While there is no cure for

RP - YET!, the disease can be managed with various medications. I am on

Methotrexate and Prednisone (and about a zillion other things for different

problems). Many of us are or have been on Metho with varying degrees of

success. I am currently on 17.5 mg of Meth once a week and 5 mg of Pred

every day - knock on wood, seems to be working so far. Do you have a Rheumy

who is familiar with RP? He can help calm your nerves so you won't worry so

much. Stress is not good for us, so get as much info as you can as soon as

you can! Also, just so you know, many of us have had the disease for years

and we are still kicking! The crazy thing is that it affects everyone

differently. Mine started in my ears and my eyes, I haven't had any more

flares in my eye since the initial problem, my ear flars are under control, I

think I have had a total of 3 flares in the year since I've been diagnosed -

other than my " Rudolph " ears, I can deal with it most of the time. If you

find yourself getting too depressed, please make sure you talk to someone

about it, OK? Meanwhile, hang in there and remember we are all here for you.

Love, Judy O

[Guest guest]

In a message dated 06/03/2001 8:54:31 PM Central Daylight Time,

eyeoreluv@... writes:

<< I

was officially diagnosed with RP last Wednesday so am

a bit depressed. Guess I always thought somebody made

a major mistake. Other than RP, my Rheumatologist

says I'm in excellent health and do hope that makes a

difference. >>

Sandy, you are very lucky to only have RP, altho that is bad enough! The

thing to remember is that while it cannot be cured YET, it can be kept under

control. I, too, was diagnosed quickly (within six weeks), I was hoping

that that one major flare (lasted 3 - 4 months) would be a one shot deal, but

it wasn't. Oh well, mine is pretty well under control, I've only had one

other flare which they caught right away, so I don't have too much damage.

Don't let it get you down, I belive that a PMA and a certain degree of

stubbornness (I refuse to let it beat me!) are critical to dealing with this,

so if the depression lasts, please get some help. You are one step ahead of

most of us in that you are perfectly healthy except for the RP, remember the

positive side, you got to meet US! And trust me, it's a wondrful resource

for knowledge, support, and lots of laughs! So hang in there. Love, Judy O

[Guest guest]

In a message dated 06/04/2001 10:07:54 AM Central Daylight Time,

L10@... writes:

<< He calls me Meme too. >>

Lucy, is that a nickname for grandmere? I am French, so when I grew up we

had meme and pepe (for grandpere), I

m just wondering if your " meme " is French too? Love, Judy