Re: Fwd: Welcome to Rpolychondritis

[Guest guest]

In a message dated 9/16/00 11:09:25 AM Eastern Daylight Time,

eyeoreluv@... writes:

<< eyeoreluv@... >>

Thanks for the welcome. I would love to join the chat on Friday's could you

please let me know what time. Thanks

Dawn

[Guest guest]

Dawn,

Welcome to the group! I have only been with them for about a month so I am

a newbie as the call you! The call you that but they treat you like you

have been here forever. This is the most wonderful group of people I have

ever had the opportunity to meet. I just love them all to pieces.

In this group you can air your feelings and not have to worry about hurting

anyone feelings. We cry, pout, complain, and mostly laugh together. If

there is anything that you want to know at least one of the group members

will know something about it. No two people are taking the same meds or

have the same symtoms. Not all the people have the same type of problems

with the RP crap. Please just step right in and e-mail anytime or all the

time. The more the better.LOL

At first some of the stories will scare you but stick with it! Not all have

some of the more serious problems of this disease. I am 43yrs old a mother

of two and have had RP for about 7years. It has effected my ears, nose and

rib area of my chest(exterior only). It is pretty much under control with

the meds I take. Yes I do have flares but normally I can live with them. I

am having a flare and now that they have controled it with Predizone I am

doing muuuuch better.

Please e-mail us an let us know all about you and give the phone bandit your

phone number and address and you just might get the greatest call that you

have ever had. The addresses and phone numbers are used only by the group

and are not to be used unless you want us to.

Hope you have as much fun as I am having with this great group of people.

Lots of Love

Glenda

On Fri, 15 Sep 2000 23:06:26 EDT, Rpolychondritisegroups wrote:

> HI Everyone, this message from our newest member was posted to the

moderators

> list by mistake, I just wanted to forward it.

>

> Roy

> From: DMZAS@...

> Message-ID:

> Date: Fri, 15 Sep 2000 22:45:15 EDT

> Subject: Re: Welcome to Rpolychondritis

> To: Rpolychondritis-owneregroups

>

> Thank you for the warm welcome. I have just recently been diagnosed with

RP.

> I had severe pain in my ear for 6 weeks and finally went to the dr. He

tried

> me on 4 different types of ear drops then finally his associated saw me

and

> she said to me that she thought I had Polychondritis. She treated me

with

> Prednisone and after 3 days I felt like a new person. That was in May.

I

> didn't have another flare up until 2 weeks ago. I started having another

ear

> ache, but not as bad, and was fatigued, exhausted all the time and just

not

> feeling well. She again put me on another Medpac. The ear ache eased up

but

> I still have been experiencing headaches daily along with my back

constantly

> aching and now pain in my right elbow which goes right down my arm

causing

> numbness in my hand and fingers. I hope that perhaps you can tell me if

> either yourself or any of the other members have experienced the same

> symptoms.

>

> Dawn

>

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[Guest guest]

Dawn

The chat is on Friday Night at 6:30 pacific time and I think it is at 9:30

eastern time. The group has set up reminders for the chat that will post a

day or two in advance to remind you and they have the correct times. They

are so much fun!! The are usually on yahoo and if you need help someone

will set it up so that the first time you go you can be a quest. If you

have a mic there is a thing called messenger that you can set up there.

Martha has set up that site so if you need help Martha is a good one for

that. She will get with you and let you know or one of the other wonderful

people on this group will help you. We are like one big happy family

here.LOL

Lots of Love

Glenda

On Sat, 16 Sep 2000 12:45:57 EDT, Rpolychondritisegroups wrote:

> In a message dated 9/16/00 11:09:25 AM Eastern Daylight Time,

> eyeoreluv@... writes:

>

> << eyeoreluv@... >>

> Thanks for the welcome. I would love to join the chat on Friday's could

you

> please let me know what time. Thanks

>

> Dawn

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