(unknown)

[Guest guest]

Dawn, you have a wonderful weekend and enjoy all of those beautiful things.

Getting away will do you a world of good. Gee, I wish i was going with you.

Have a real Happy Easter and just rest and relax.

hugs

[Guest guest]

I've been on plaquinil for 18 months, don't know that it does any good but

we're all different. Maybe I'd be more messed up without it. I'm going

through the skin problems now so who knows. I've always had weird stuff going

on but please go on it. Who knows if it helps its worth trying. I sure do

get sick of visiting my drug store.....Good luck and happy Easter....Sue

[Guest guest]

In a message dated 04/15/2001 3:31:40 AM Central Daylight Time,

Idigflower@... writes:

<< have recently got some rp problems with my Kiddneys from the RP (I

am also thought to be in remission) I was told to start Plquanal

(sp), I am picking it up tomorrow. I never had Kidney involvement, is

this normal? and do you think the Plaqunal will work? I was told >>

, I am so sorry this is happening to you. Does the dr have any idea

why? All I keep wondering is could the mega doses of prednisone have caused

this? I'm sure you'll here from others who know a heck of a lot more than I

do, maybe will know, have you asked her? And you were doing so great!

I'm really sorry this happened. How serious is this? I will keep you on my

prayer list (not that you were ever off it), and hope and pray for the best>

Hang in there! Love, Judy

[Guest guest]

In a message dated 04/15/2001 3:31:40 AM Central Daylight Time,

Idigflower@... writes:

<< have recently got some rp problems with my Kiddneys from the RP (I

am also thought to be in remission) I was told to start Plquanal

(sp), I am picking it up tomorrow. I never had Kidney involvement, is

this normal? and do you think the Plaqunal will work? I was told >>

, I am so sorry this is happening to you. Does the dr have any idea

why? All I keep wondering is could the mega doses of prednisone have caused

this? I'm sure you'll here from others who know a heck of a lot more than I

do, maybe will know, have you asked her? And you were doing so great!

I'm really sorry this happened. How serious is this? I will keep you on my

prayer list (not that you were ever off it), and hope and pray for the best>

Hang in there! Love, Judy

[Guest guest]

Dear Sherry, I started out by looking at Merck.com and Nord.com for the research. Its a very confusing disease because no two people are alike. I'm sorry this is happening to your family but stay with us and we'll do what we can to help you....Sue

[Guest guest]

Sherry,

Welcome to the RP list. Ask any questions you want, there is lots of info

here. What other health problems does your Mom have?

Sandy

> My mother suffers from RP . I am looking for any information on the

> diease .She has a lot of other health problems . Please help. Sherry

>

>

>

> 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]

In a message dated 4/23/01 11:55:10 AM Pacific Daylight Time,

sabrina@... writes:

<< My mother suffers from RP . I am looking for any information on the

diease .She has a lot of other health problems . Please help. Sherry

>>

Sherry, welcome to the best support group. So sorry to hear that your

mother has RP. How long has she had it? Please tell us a little about her

and please feel free to ask all the questions you want. I think the first

thing I would do is to find a good rheumy. One who can get her on the right

medications. The sooner the better. A lot of the information that you will

read is outdated and really scarey. RP is controlable with the right care.

Just let us know what kind of information you need and someone will guide you

to the right place.

It is just as hard on family members, if not harder. Feel free to vent. We

are all here for you. Believe me.....we have lots of shoulders...

hugs

C

[Guest guest]

In a message dated 04/23/2001 1:55:10 PM Central Daylight Time,

sabrina@... writes:

<< My mother suffers from RP . I am looking for any information on the

diease .She has a lot of other health problems . Please help. Sherry

Sherry, since you've found us, you've found a great source of information.

Hope we can help your mom. How long has she had RP? What are some of her

other problems? Not (just) being nosy, I'd like to help in any way I can,

even if it is only moral support. Love,Judy O

>>

[Guest guest]

In a message dated 04/23/2001 1:55:10 PM Central Daylight Time,

sabrina@... writes:

<< My mother suffers from RP . I am looking for any information on the

diease .She has a lot of other health problems . Please help. Sherry

Sherry, since you've found us, you've found a great source of information.

Hope we can help your mom. How long has she had RP? What are some of her

other problems? Not (just) being nosy, I'd like to help in any way I can,

even if it is only moral support. Love,Judy O

>>

[Guest guest]

gobo though we've never met I'd like to say thank God for angels like you. You truley are a blessing!

[Guest guest]

gobo though we've never met I'd like to say thank God for angels like you. You truley are a blessing!

[Guest guest]

gobo though we've never met I'd like to say thank God for angels like you. You truley are a blessing!

[Guest guest]

Gobo,

I am not sure a joke is a good idea for but if you feel it

might help, you can tell her this one that I just came across. She might

like it but laughing during recovery is sometimes contraindicated.

Love and healing and a few smiles, !!

Janice in Texas

Paint My Porch

One day a blonde comes out of the tanning salon.

She wants to make some money so she goes to

one of the rich neighborhoods. She rings the door

bell and says, " HI, is there anything I could

do for your house or you??? "

The man thinks and says,

" Sure, can paint my porch. You will find

all the stuff in the garage. "

The girl says, " O.K., How much will you pay me? "

The man says, " How much does fifty bucks sound? "

The blonde quickly agrees and get straight to work.

The wife who had heard the conversation inside says,

" 50 bucks, I hope she knows the porch goes all around the house! "

25 minutes later the girl knocks on the door and says,

" O.K. I am done. Can I have my money now? "

Surprised the man replies, " O.K. Let me get the money "

He comes back and the girl says as she is leaving,

" By the way, it's a Ferrari, not a Porch! "

[Guest guest]

Gobo,

I am not sure a joke is a good idea for but if you feel it

might help, you can tell her this one that I just came across. She might

like it but laughing during recovery is sometimes contraindicated.

Love and healing and a few smiles, !!

Janice in Texas

Paint My Porch

One day a blonde comes out of the tanning salon.

She wants to make some money so she goes to

one of the rich neighborhoods. She rings the door

bell and says, " HI, is there anything I could

do for your house or you??? "

The man thinks and says,

" Sure, can paint my porch. You will find

all the stuff in the garage. "

The girl says, " O.K., How much will you pay me? "

The man says, " How much does fifty bucks sound? "

The blonde quickly agrees and get straight to work.

The wife who had heard the conversation inside says,

" 50 bucks, I hope she knows the porch goes all around the house! "

25 minutes later the girl knocks on the door and says,

" O.K. I am done. Can I have my money now? "

Surprised the man replies, " O.K. Let me get the money "

He comes back and the girl says as she is leaving,

" By the way, it's a Ferrari, not a Porch! "

[Guest guest]

Gobo,

I am not sure a joke is a good idea for but if you feel it

might help, you can tell her this one that I just came across. She might

like it but laughing during recovery is sometimes contraindicated.

Love and healing and a few smiles, !!

Janice in Texas

Paint My Porch

One day a blonde comes out of the tanning salon.

She wants to make some money so she goes to

one of the rich neighborhoods. She rings the door

bell and says, " HI, is there anything I could

do for your house or you??? "

The man thinks and says,

" Sure, can paint my porch. You will find

all the stuff in the garage. "

The girl says, " O.K., How much will you pay me? "

The man says, " How much does fifty bucks sound? "

The blonde quickly agrees and get straight to work.

The wife who had heard the conversation inside says,

" 50 bucks, I hope she knows the porch goes all around the house! "

25 minutes later the girl knocks on the door and says,

" O.K. I am done. Can I have my money now? "

Surprised the man replies, " O.K. Let me get the money "

He comes back and the girl says as she is leaving,

" By the way, it's a Ferrari, not a Porch! "

[Guest guest]

.. The whole situation would be funny if it

wasn't so sad! I'm sorry that I told ANYONE at work that I was

having this done.

Dorian,

Sorry to hear about your coworkers. I don't work outside the home at this time ( 8 kids at home ) but I too have not told many people for the same reasons.

I am already ( even before surgery ) sorry that I told anyone at all. I wished I had told no one at all. I hate that people can be so rude. These people at your job may be jealous the more you lose, unfortunately not everyone rejoices when someone gets victory over a lifelong problem.

I bet if you had cancer and were beating it everyone would rally around you, but for some reason especially women like when others around them are worse than they are so they can feel better about themselves. If I was near you I would certainly congratulate you on a job well done. Don't let them get you down, keep up the great work and take care of youself.

Kathy

Dr. Elariny

June 7

[Guest guest]

.. The whole situation would be funny if it

wasn't so sad! I'm sorry that I told ANYONE at work that I was

having this done.

Dorian,

Sorry to hear about your coworkers. I don't work outside the home at this time ( 8 kids at home ) but I too have not told many people for the same reasons.

I am already ( even before surgery ) sorry that I told anyone at all. I wished I had told no one at all. I hate that people can be so rude. These people at your job may be jealous the more you lose, unfortunately not everyone rejoices when someone gets victory over a lifelong problem.

I bet if you had cancer and were beating it everyone would rally around you, but for some reason especially women like when others around them are worse than they are so they can feel better about themselves. If I was near you I would certainly congratulate you on a job well done. Don't let them get you down, keep up the great work and take care of youself.

Kathy

Dr. Elariny

June 7

[Guest guest]

.. The whole situation would be funny if it

wasn't so sad! I'm sorry that I told ANYONE at work that I was

having this done.

Dorian,

Sorry to hear about your coworkers. I don't work outside the home at this time ( 8 kids at home ) but I too have not told many people for the same reasons.

I am already ( even before surgery ) sorry that I told anyone at all. I wished I had told no one at all. I hate that people can be so rude. These people at your job may be jealous the more you lose, unfortunately not everyone rejoices when someone gets victory over a lifelong problem.

I bet if you had cancer and were beating it everyone would rally around you, but for some reason especially women like when others around them are worse than they are so they can feel better about themselves. If I was near you I would certainly congratulate you on a job well done. Don't let them get you down, keep up the great work and take care of youself.

Kathy

Dr. Elariny

June 7

[Guest guest]

Meli,

I hope it is me Kathy B. you were talking to. My surgery is Tuesday, the 15Th of May. If there is another Kathy that is having hers tomorrow, good luck. I'll pray for you.

Kathy Bazzi

Dearborn, MI

Patiently waiting....paid off

Dr. Mustafa Hares

surgery date May 15 8am

354 lbs.

[Guest guest]

Meli,

I hope it is me Kathy B. you were talking to. My surgery is Tuesday, the 15Th of May. If there is another Kathy that is having hers tomorrow, good luck. I'll pray for you.

Kathy Bazzi

Dearborn, MI

Patiently waiting....paid off

Dr. Mustafa Hares

surgery date May 15 8am

354 lbs.

[Guest guest]

Meli,

I hope it is me Kathy B. you were talking to. My surgery is Tuesday, the 15Th of May. If there is another Kathy that is having hers tomorrow, good luck. I'll pray for you.

Kathy Bazzi

Dearborn, MI

Patiently waiting....paid off

Dr. Mustafa Hares

surgery date May 15 8am

354 lbs.

[Guest guest]

In a message dated 7/3/01 11:11:15 PM Pacific Daylight Time,

peggophx@... writes:

> Hi all. I'm new to this group and hope to get some answers. I was

> diagnosed with rosacea about 10 yrs. ago. In the last year or so I

> have had a problem with dry scaley skin around my nostrils. This

> comes with the flare ups and clears up when the acne clears up. Does

> anyone else have this symptom? Also, it seems to me that my flare

> ups are very much hormonally influenced....can this be so? Thanks,

>

Peg,

I get dry skin around my nostrils although I do not have an acne problem. I

have been moisturizing with pure jojoba oil after washing and/or shaving, and

it has been terrific.

[Guest guest]

Hi,

I get a similar symptom with dry scaley patches near

my nose and just below the corners of my mouth. I have

good luck with Florasone, a topical you can buy at

Whole Foods. It is a homepathic plant-based cream that

acts like a steriod without the nasty side effects or

backlash associate with cortisone, etc.

Suzi

__________________________________________________

[Guest guest]

Ruthie what a difficult situation to be in...

My suggestion would be to write to her. You have a bit more time to

think about what you want to say and she doesn't have to respond in

any way. I suppose that it might take longer than you would like to

get there airmail, so maybe email would be an alternative?

I have a friend who has recently written a book about her experiences

of cancer - she was the sufferer of course - and one of the things

she mentioned was how important it was to have letters, just to know

that people cared. I also know that her parents who are *intensely*

private people appreciated the concern others expressed to them.

--

jennifer@...

Vaudin

[Guest guest]

> Ruthie what a difficult situation to be in...

>

> My suggestion would be to write to her. You have a bit more time to

> think about what you want to say and she doesn't have to respond in

> any way. I suppose that it might take longer than you would like to

> get there airmail, so maybe email would be an alternative?

Thanks for the idea, ; the thought had crossed my mind to

write her an email, problem is, she's not the type to check her email

very often, that's if she has an email connection altogether; (I

think she must have, for the business, but she's not really into

computers that much)

What I have done this week is to get my daughter in London who is

staying in my house (and whose 4 kids are busy wrecking it!) to send

her a bunch of flowers with a note saying " thinking of you, love from

Ruthie " . It doesn't say much but I have talked to her in the past in

more detail so she does know what I want to say.

Ruthie