Re: Re: Kathi, jobs, health & email

[Guest guest]

In a message dated 9/7/01 11:43:34 AM Pacific Daylight Time,

angelhearts61@... writes:

<< know this doesn't help, but it was intriguing

to see someone with a Red face like mine. That is one of the few things

that I haven't seen discussed. I wonder if anyone else with RP has the Red

Face????? >>

Kathi, I have a red face and neck... Plus the palms of my hands are red

also... Test borderline for Lupus, but have for years...

hugs

[Guest guest]

Dear Kathi, I couldn't believe your description of what you have been

through with your red face. It perfectly described what I went through. I

still get that butterfly rash on and off. One doctor told me it was a

classic Lupus rash and yet everytime they have tested me I've come up

negative for Lupus, My internist is convinced it has something to do with

theRP. It's worse when I'm flaring too. Sometimes it only lasts an hour or

so and other times much longer. My face feels hot and painful at times too.

I thought I was just going crazy and to be honest the red face was driving

me there. I don't have rosacea either and the dermatologist biopsied it and

said it wasn't Lupus but there were inflammatory changes. Still don't know

what it is only what it's not. I think my internist is right. I think it's

somehow related to the RP. Sue Park

Re: Re: Kathi, jobs, health & email

> >

> >

> > In a message dated 09/03/2001 11:01:01 AM Central Daylight Time,

> > angelhearts61@... writes:

> >

> > << my ears now is that they get a burning sensation around the top

> >portion of

> > them-- the cartilage part. Does anyone else have this problem? >>

> >

> > Kathi, I have horrible " ear flashes " kind of like a hot flash in the

> >ear!

> > For the most part, it doesn't hurt, just bright red and

> > hot enough to burn yourself! It's the pits!! But what can you do?

So

> >long

> > as I'm not flaring and in pain, I'll live with my Rudolph ears! Love,

> >Judy

> >

> >

[Guest guest]

Dear Kathi, I couldn't believe your description of what you have been

through with your red face. It perfectly described what I went through. I

still get that butterfly rash on and off. One doctor told me it was a

classic Lupus rash and yet everytime they have tested me I've come up

negative for Lupus, My internist is convinced it has something to do with

theRP. It's worse when I'm flaring too. Sometimes it only lasts an hour or

so and other times much longer. My face feels hot and painful at times too.

I thought I was just going crazy and to be honest the red face was driving

me there. I don't have rosacea either and the dermatologist biopsied it and

said it wasn't Lupus but there were inflammatory changes. Still don't know

what it is only what it's not. I think my internist is right. I think it's

somehow related to the RP. Sue Park

Re: Re: Kathi, jobs, health & email

> >

> >

> > In a message dated 09/03/2001 11:01:01 AM Central Daylight Time,

> > angelhearts61@... writes:

> >

> > << my ears now is that they get a burning sensation around the top

> >portion of

> > them-- the cartilage part. Does anyone else have this problem? >>

> >

> > Kathi, I have horrible " ear flashes " kind of like a hot flash in the

> >ear!

> > For the most part, it doesn't hurt, just bright red and

> > hot enough to burn yourself! It's the pits!! But what can you do?

So

> >long

> > as I'm not flaring and in pain, I'll live with my Rudolph ears! Love,

> >Judy

> >

> >

[Guest guest]

In a message dated 09/07/2001 10:35:54 PM Central Daylight Time,

ramius@... writes:

<< For this reason I am trying to have enough patience to let

my hair grow you. I usually wear it fairly short. = ) >>

Kim, boy do I ever empthasize ! I have very short hair (Pixie cut) which I

really like, except that it really makes the ear flashes obvious! My friends

usually take it in stride, but I am going to be teaching a religious ed class

at church and I really hate having to the kids, but what else can I do? If I

don't tell them, I'm sure they will all tell their parents about their

" wierd " teacher! I don't have the patience to let my hair grow, so I guess I

just have to live with it! POOP!! I guess we'll never be able to hide in a

crowd! I'd try ear muffs, except that I can't imagine putting earmuffs on

ears that are on fire! I guess it's a no win situation! Hang in there!

Love, Judy

[Guest guest]

In a message dated 09/07/2001 10:35:54 PM Central Daylight Time,

ramius@... writes:

<< For this reason I am trying to have enough patience to let

my hair grow you. I usually wear it fairly short. = ) >>

Kim, boy do I ever empthasize ! I have very short hair (Pixie cut) which I

really like, except that it really makes the ear flashes obvious! My friends

usually take it in stride, but I am going to be teaching a religious ed class

at church and I really hate having to the kids, but what else can I do? If I

don't tell them, I'm sure they will all tell their parents about their

" wierd " teacher! I don't have the patience to let my hair grow, so I guess I

just have to live with it! POOP!! I guess we'll never be able to hide in a

crowd! I'd try ear muffs, except that I can't imagine putting earmuffs on

ears that are on fire! I guess it's a no win situation! Hang in there!

Love, Judy

[Guest guest]

In a message dated 09/08/2001 7:16:39 AM Central Daylight Time,

CDONOHOUE@... writes:

<< They are uncomfortable, but nothing like the ear flares I have read about.

My dermatologist also said a it was a marker for lupus... >>

Cathy, what do they know? I think once you've had this a while, you know

what's going on in your body better than they do!!!!!!!!! I always know when

a flare is coming. Not necessrily anything I can put my finger on, I just

know! Besides, I happen to think our red faces and ears are attractive,

we're not wierd, we're TRENDSETTERS! Love,Judy

[Guest guest]

In a message dated 09/08/2001 7:16:39 AM Central Daylight Time,

CDONOHOUE@... writes:

<< They are uncomfortable, but nothing like the ear flares I have read about.

My dermatologist also said a it was a marker for lupus... >>

Cathy, what do they know? I think once you've had this a while, you know

what's going on in your body better than they do!!!!!!!!! I always know when

a flare is coming. Not necessrily anything I can put my finger on, I just

know! Besides, I happen to think our red faces and ears are attractive,

we're not wierd, we're TRENDSETTERS! Love,Judy

[Guest guest]

In a message dated 9/10/01 3:43:08 PM Pacific Daylight Time, JOstry93@...

writes:

<< I have very short hair (Pixie cut) which I

really like, except that it really makes the ear flashes obvious! M >>

Judy, Kim and all of us other short haired, red eared people.... Lets just

show these ears off with pride....!!!! When someone asks or stares we can

explain just what caused our ears to turn red and HURT!!! This is public

awareness..... Who knows..we might just help someone else get a dx faster.

LOL

hugs

[Guest guest]

In a message dated 9/10/01 3:43:08 PM Pacific Daylight Time, JOstry93@...

writes:

<< I have very short hair (Pixie cut) which I

really like, except that it really makes the ear flashes obvious! M >>

Judy, Kim and all of us other short haired, red eared people.... Lets just

show these ears off with pride....!!!! When someone asks or stares we can

explain just what caused our ears to turn red and HURT!!! This is public

awareness..... Who knows..we might just help someone else get a dx faster.

LOL

hugs

[Guest guest]

Judy,

Thanks for the encouragement. It is so funny to go around with one blood red ear and one cheek. I look like I put on way too much blush when this happens. Cathy

Re: Re: Kathi, jobs, health & email

<< They are uncomfortable, but nothing like the ear flares I have read about. My dermatologist also said a it was a marker for lupus... >>Cathy, what do they know? I think once you've had this a while, you know what's going on in your body better than they do!!!!!!!!! I always know when a flare is coming. Not necessrily anything I can put my finger on, I just know! Besides, I happen to think our red faces and ears are attractive, we're not wierd, we're TRENDSETTERS! Love,JudyDISCLAIMER!!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]

Judy,

Thanks for the encouragement. It is so funny to go around with one blood red ear and one cheek. I look like I put on way too much blush when this happens. Cathy

Re: Re: Kathi, jobs, health & email

<< They are uncomfortable, but nothing like the ear flares I have read about. My dermatologist also said a it was a marker for lupus... >>Cathy, what do they know? I think once you've had this a while, you know what's going on in your body better than they do!!!!!!!!! I always know when a flare is coming. Not necessrily anything I can put my finger on, I just know! Besides, I happen to think our red faces and ears are attractive, we're not wierd, we're TRENDSETTERS! Love,JudyDISCLAIMER!!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]

What a great idea! And thanks everyone for your encouragement.

Kim

Re: Re: Kathi, jobs, health & email

In a message dated 9/10/01 3:43:08 PM Pacific Daylight Time,

JOstry93@...

writes:

<< I have very short hair (Pixie cut) which I

really like, except that it really makes the ear flashes obvious! M >>

Judy, Kim and all of us other short haired, red eared people.... Lets

just

show these ears off with pride....!!!! When someone asks or stares we

can

explain just what caused our ears to turn red and HURT!!! This is

public

awareness..... Who knows..we might just help someone else get a dx

faster.

LOL

hugs

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]

What a great idea! And thanks everyone for your encouragement.

Kim

Re: Re: Kathi, jobs, health & email

In a message dated 9/10/01 3:43:08 PM Pacific Daylight Time,

JOstry93@...

writes:

<< I have very short hair (Pixie cut) which I

really like, except that it really makes the ear flashes obvious! M >>

Judy, Kim and all of us other short haired, red eared people.... Lets

just

show these ears off with pride....!!!! When someone asks or stares we

can

explain just what caused our ears to turn red and HURT!!! This is

public

awareness..... Who knows..we might just help someone else get a dx

faster.

LOL

hugs

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 09/10/2001 7:38:43 PM Central Daylight Time,

RCColloran@... writes:

<< When someone asks or stares we can

explain just what caused our ears to turn red and HURT!!! >>

, I'll be teaching a class of 4th graders. The suggestion from the

instructors is not to say anything unless the kids mention it. That makes me

a little nervous, I'm not sure I want them going home and telling their

parents about their teachers weird ears. I guess (if you will pardon the

pun) I'll just play it by ear! Love, Judy

[Guest guest]

In a message dated 09/10/2001 7:38:43 PM Central Daylight Time,

RCColloran@... writes:

<< When someone asks or stares we can

explain just what caused our ears to turn red and HURT!!! >>

, I'll be teaching a class of 4th graders. The suggestion from the

instructors is not to say anything unless the kids mention it. That makes me

a little nervous, I'm not sure I want them going home and telling their

parents about their teachers weird ears. I guess (if you will pardon the

pun) I'll just play it by ear! Love, Judy

[Guest guest]

In a message dated 9/17/01 8:49:33 PM Pacific Daylight Time, JOstry93@...

writes:

<< The suggestion from the

instructors is not to say anything unless the kids mention it. >>

Judy, I guess that makes sense... But if they do ask you can answer them

honestly.

hugs

[Guest guest]

In a message dated 9/17/01 8:49:33 PM Pacific Daylight Time, JOstry93@...

writes:

<< The suggestion from the

instructors is not to say anything unless the kids mention it. >>

Judy, I guess that makes sense... But if they do ask you can answer them

honestly.

hugs