Re: Scarlet and all other new members

[Guest guest]

Hi and welcome to the group. It is so good that you have a wonderful husband

for a support system. It really makes a huge difference. I'm sorry I'm late

in welcoming you and all the other new members. I'm trying to get caught up

on all the mail.

This is a wonderful support group. We are all like family. We are here for

you to rant, rave, cry, laugh or just lend our ears and shoulders. Someone

will find an answer to your questions or lead you in the right direction.

Please just keep asking questions. We all learn by them.

We have chat groups that are a bunch of fun and if you have a microphone it

is even more fun. They are on Wed mornings at 9;30 pacific time and Friday

evenings at 6:30pm pacific time. We can use the chat room at anytime, so if

you catch someone on line, just tell them you are going there.

Okay, now I will REMIND you (notice I didn't say " nag " ) of some things that

you should be doing. LOL Please check into ordering a medic alert pendant

or bracelet. If you are on steroids you really need one, but also having RP

it is important. They need to know that there might be some problems if they

should have to intubabe you for any reason. you can do this on line or call

them. I called because I had too many things to list. LOL They really helped

me out.

It's almost time for flu shots and pneumonia shots if you haven't gotten it.

Mark it on your calendar.

Get your baseline tests for bone density, hearing, eye exam, mammograms, etc.

We really need to have baselines.

Send Heidi your name , address, phone # and birthday (not the year) if you

want to have an address list sent to you. This is only for the group and is

NOT to be handed out or any info given to anyone else. This is all group

confidential.

Tell us how you found our group. Did you find it through the new Foundation

web site? Let us know so we can see how we are bringing about RP awareness.

Just ask if you would like some Rp Brochures. They are free and we will send

you as many as you would like (up to 100 at a time). These were all made

possible by the RP Foundation. This is entirely a different group than this

support group. You may visit our site at www.polychondritis.org

The Foundation's goal is to bring about awareness to the public and medical

professions. We are a non profit org. and all of the people involved do it

for free. All of your money goes towards printing information and funding

research. WE were able to fund Dr. Buckner's research last year. WE all

want the same outcome... To find a cause and a cure for RP. Please visit the

site and find out how you can help.

If you are intersted in joining the Foundation, all we ask is a $15 a year

donation. You may make a donation at any time for any amount. You may also

ask your friends and family to make a donation in your honor. I am writing

letters to friends and family and enclosing a brochure.

If you would be interested in helping volunteer for the Foundation, just let

us know. We can always use the help. Tell us what you would be interested

in doing. (newsletter, fundraising, ect.). If you have any ideas to add,

please let us know about them too.

I want to take this time to thank all of you who have continued to support

the Foundation.

Marilyn, thank you for taking charge of the exercise group. For anyone

interested, we put change in a jar everytime we do exercise or in my case,

everytime I don't. LOL At the end of 3 months Marilyn reminds us and we

cound up our change and send it to the Foundation. It all adds up.

Kathleen is going to be in charge of our quilt. She is still in the process

of moving, but once she is settled, she has offered to make a quilt for the

group.. Well, she will put it together. Anyone who is interested can make a

quilt square ( in red/whit/blue) and send it to Kathleen and she will put it

together. We will raffle it off.

If you have any other ideas, please let us know.

I'm sorry for rambling. I just felt that I needed to welcome all of you I

haven't yet. I'm looking forward to getting to know each and everyone of

you.

Please be sure to let us know how you found us. Sorry you need us, but glad

we can be here for you. Thanks to Angie and !!!

hugs

[Guest guest]

In a message dated 9/10/02 6:58:42 AM Pacific Daylight Time,

sisterslk@... writes:

<<

Heck, I'll do more than lend my ears! If anyone wants them, they can have

them! FREE! Just pay for removal.

Love you,

>>

]

Squeek, LOL I knew when I wrote that, someone would catch it.LOL I think we

all have ears we would gladly give away. Heck at the last reunion,we had

spare body parts with lots of ears to give away. Hey Heidi, you still have

those????? LOL

[Guest guest]

RCColloran@... wrote:

lend our ears and shoulders.

Heck, I'll do more than lend my ears! If anyone wants them, they can have them! FREE! Just pay for removal.

Love you,