Welcome to a bunch of new members.

[Guest guest]

Boy, we just keep growing by the day... Would like to welcome all the new

members, sorry I don't know your names. But they are mroma37617@aol,

elecurrier79 @cs, Ramius @myrealbox, Jewels03865 @yahoo,

Hope I didn't miss anyone. You have found a wonderful group here. There

is so much informationa and support. We have an RP foundation, I will be

reposting information about that later tonight for all the newbies. There is

also a reunion in Oklahoma on Labor Day weekend. Look for the posts.

Please just jump right in and tell us your names and a little about

yourselves. You might find there is someone in the group that is your

neighbor. Asking questions is how we all learn and we want to learn

something new every day to whip this disease.

Please post as much as you want... Looking forward to getting to know you

all better.

hugs

California

[Guest guest]

Hi New members,

I also would like to welcome all the new members, I know we have a bunch of them. Please feel free to write any questions to the group that you would like to know the answer to and also visit out web page at http://polychondritis.tripod.com/ You will find a lot of information there. WE hope we can be of help to you.

Lu

...I allsoo. Would like to welcome all the new members, sorry I don't know your names. But they are mroma37617@aol, elecurrier79 @cs, Ramius @myrealbox, Jewels03865 @yahoo,

[Guest guest]

Hi,

Thanks for the welcome. My name is Ellen and I live in Kittery Maine. My

sister is also a new member. I wrote about my history with the disease, I

hope it went through. I have two beautiful daughters, ages 21 and 8.The 21

year old just got married so I also have a wonderful son-in-law. I also have

a good hubby. I'm disabled, so I'm home all day. I love to make crafts. In

fact I used to have a business with my sister who also has RP. We had

to stop because of our health but I still paint.

Take care of yourself, I look forward to hearing more about the group.

Ellen

[Guest guest]

Hello,

I'm elecurrier79@... I'm a new member and my name is Ellen, I live

in Kittery, Maine. I'm happy to be a part of the group and am looking forward

to getting to know you all.

Thanks, Ellen

[Guest guest]

Dear Ellen,

So glad to see you post to the group. It's nice to learn more about

you and your sister. I've always heard that Maine is a lovely

place. I could never live there, I'd make myself sick eating those

lobsters every day.

Sounds like you have a real nice family. I enjoy crafts too, but

just don't seem to find the time to do them anymore. My neighbor

taught me how to crochet this past fall and I find I enjoy doing

that. Can't use the thread because my eyes are bad, but I make

things with yarn. I also enjoy doing genealogy.

Take care and keep posting. Hope you and your sister are both doing

well. Love, Marilyn

Hi,

> Thanks for the welcome. My name is Ellen and I live in Kittery

Maine. My

> sister is also a new member. I wrote about my history with the

disease, I

> hope it went through. I have two beautiful daughters, ages 21 and

8.The 21

> year old just got married so I also have a wonderful son-in-law. I

also have

> a good hubby. I'm disabled, so I'm home all day. I love to make

crafts. In

> fact I used to have a business with my sister who also has

RP. We had

> to stop because of our health but I still paint.

> Take care of yourself, I look forward to hearing more about the

group.

>

> Ellen

[Guest guest]

Ellen

It is so good to see someone new posting! We have several new members but not many of been posting. Please just jump in and post anytime you like. Ask questions or anything. This is the greatest group you will ever find!

I live in Oregon and have had RP for over 8yrs now. How long have you had RP? Please tell us more about yourself! Sorry to hear both you and your sister have RP. Hope your sister posts us soon too!

Take care

Lots of Love

Glenda

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[Guest guest]

Hello Glenda,

Thanks for the greeting. I've had RP for about 17 years. My sister has

had it 4 or 5 years. She has only been dx since last summer. I got my dx

about 6 yrs. ago. The docs played around alot with different dx, lupus, then

I had the honor of being labeled with a dx of an " auto-immune disease of

unknown origin " . They mentioned RP several times over the yrs. but never

settled on it.

Finally I went to another doc and he said he suspected RP but didn't

treat me for it until I had another ear flare which we had biopsied and as a

result of that I finally got my dx. and he started treating me.

I have several of the most common symptoms, I'm disabled and have

trachea involvement and am on 02 all the time know.

We,ve tried several different combinations of the most common

treatments. However, I seem to always be in some level of a flare even on the

good days. When I have a big flare and go on a taper, my symptoms return when

I start to taper down. My Rheumy is trying some experimental treatments that

aren't usally ment for RP. We tried remicaide to no avail. Next we're

planning on trying embrol. We'll see if this helps or not.I pray something

will.

I'll encourage my sister to start posting. She wants to but she

can't find the time as her family keeps her very busy. Shes jewels08365.

take

care, Talk to you soon,

Ellen

[Guest guest]

Dear ,

This is your sister who loves you more than words can say. I'm glad

you had a chance to share about yourself. We're lucky, we have a group member

only an hour away.

Keep posting, I'm finding alot of great people in this group.

love you always,

Ellen

[Guest guest]

Oh, you two make me want to cry... My sister is onlyl an hour away and I love

her too with more than words can say....Aren't sisters wonderful... I'm soo

glad that you both have join us...We just keep getting such great people in

the group.. AND a lot of sisters. LOL Thank you both for sharing your story

with us...

hugs

In a message dated 7/25/01 3:14:24 PM Pacific Daylight Time,

elecurrier79@... writes:

<< ear ,

This is your sister who loves you more than words can say. I'm glad

you had a chance to share about yourself. We're lucky, we have a group

member

only an hour away.

Keep posting, I'm finding alot of great people in this group.

love you always,

Ellen

>>

[Guest guest]

Hi you two, there is a lot of really great people here. They get to be like sisters. We are here to support and help each other with symptoms, mediciations and general information. We also let each other vent and complain (as you can tell from my last post) Welcome, Sue Marth

[Guest guest]

Hi everyone,

My name is and I have been reading many of the e-mail you write

to each other. I am glad my sister who also has rp found this group. At

first it was all pretty scary reading what you all have problems with.

but then I figured I couldn't get them all? Could I???LOL

For the last 27 years I have watched my sister Ellen suffer from one

illness to the next. always different dxs and treatment. I have watched

her suffer most of my life. finally around 4 years ago she got a dx of

rp. Of course it was pretty much out of control by then. I always told

her that God must of given it to her instead of me because she was stronger

and could take stress and pain. I was a big baby and no one would be able

to stand my complaining.LOL well I have grown up...........

five years ago I got very sick and was dx after 3 months with sarcoidosis.

It attacked my lungs,lymphnods,saliva gland,sinusis,ear infections ect.ect.

I had to have a lung biopsy done. they tried to get it from the throat

instead of collapsing the lungs and going in that way. It didn't work and

they had to do both. when the surgeon went into the the throat he cut my

vocal cord and I couldn't talk for 6 months. Just whispers. the lower part

of both lungs are dead and i would have to be on oxygen the rest of my

life. It took a year and lots of rest to feel some what normal again.

another year of meds and a little better. I came off of the oxygen after

only a short time. I hated it. The best thing was that my complaining was

limited and I didn't drive my family away.LOL

In June 2000 I was dx with rp. I never felt the same sense the sarcoid

and things could not be explained. My sister and I had different

symptoms. I feared for a while I had rp but wouldn't face it until one

day Ellen saw my nose and came out with it. after seeing my sister suffer

for so long this was devastating to me. I now feel lucky because

I had it detected so much earlier than Ellen. I try to look after myself

better and can learn from Ellen. And now all of you.

My worst problem is in my inner ear. the dr. looks in it healthy and

pink nothing wrong. It wasn't until ellen wrote to you that i found out

what is happening and what to do. I went to my dr. and I will be

going in for some tests ect. I have the other stuff with nose,ribs and

lymphnoids,chest wall. i also have big problems with my saliva and eyes.

dr. can't explain.some say I have Sjodrens sp????? I just turned 43 on

July 4th and found out a week later that the meds have put me right into

full menopause,hot flashes and all.

About my family:

I am happily married to a great guy named Bob. I have been married

for 14 years. I have two sons. My oldest is 12. He was born with a birth

defect and has had 12 operations and procedures. We spent the first 21/2

years helping him survive and living in and out of hospitals. His birth

defect is corrected and he should lead a pretty normal life. Unfortunately

he has an extreme case of ADHD and some emotional problems. they think

he didn't get enough oxygen. He has been on life support twice. This makes

our life very difficult working in the battlefields of ADHD and behavior

problems. we all work very hard and feel we will win this one in time.

He is a great kid,filled with personality.

My other son is 9. He is healthy with a mild case of ADD.He loves music

and is doing well with a sick mom and brother.

We live in NH and love moose. we go camping a lot during the summer.

It can be exhausting packing and unpacking but its worth it. We have a

trailer so that makes a difference. We go around every night looking for

moose and other wildlife. we love it. Its a great thing to share with the

boys.

I am on disability (when I got sarcoid) and can't imagine how you all

work. If you feel like me in the morning it must be very rough for you.

I admire you. I love doing crafts. right now I am into stamping. I am having

a lot of fun with it when I can. I make up a few cards and give them for

gifts and stuff.

Well I think that's enough of me you all can handle in one day. lol

Take care everyone.

Lu1953@... wrote:

Hi

New members,

I

also would like to welcome all the new members, I know we have a bunch

of

them.

Please feel free to write any questions to the group that you would

like

to know the answer to and also visit out web page at

http://polychondritis.tripod.com/

You

will find a lot of information there. WE hope we can be of help to you.

Lu

...I

allsoo. Would like to welcome all the new

members,

sorry I don't know your names. But they are mroma37617@aol,

elecurrier79

@cs, Ramius @myrealbox, Jewels03865 @yahoo,

DISCLAIMER!!

WE ARE NOT MEDICAL PROFESSIONALS,

THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY.

PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED.

WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER

EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK

YOU

[Guest guest]

,

So glad to see you post! Welcome to the greatest group of people that you will ever find! All I can say is wow what a life you have lead! Thank goodness you have a great sister and she recognized the symptoms!

I am 44 and started through the menopause early due to the meds I guess. My kids are grown but we are raising our 6 year old granddaughter. I live in Springfield, Oregon. I have had RP for over 8 years and still lead a fairly normal life. Well as normal as it can be for me!LOL

Take care and keep posting! It is always great to see the new people post. We get to know you better that way!LOL

Lots of Love

Glenda

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