Re: Wow New

[Guest guest]

Hello Heidi,

Where do you live in Oklahoma? I live in Denton Texas. Ever heard of it? I've

had RP for 5 years. How 'bout you? ALesia

[Guest guest]

Hallo Alesia !!

This is Heidi >Thanks for you Mail .I live in Tulsa Or I should

say Broken Arrow .Could you please send me your Address and Phone Number ??

Plus your e mail Address.Will write later some more

got to go to work now .YUukkkssss !!!!

Love Heidi

> Hello Heidi,

> Where do you live in Oklahoma? I live in Denton Texas. Ever heard of it?

I've

> had RP for 5 years. How 'bout you? ALesia

>

> ------------------------------------------------------------------------

> Best friends, most artistic, class clown Find 'em here:

> http://click./1/4054/1/_/32049/_/958529617/

> ------------------------------------------------------------------------

>

> hi and welcome. maybe we can come up with answers that our doctors can't

>

[Guest guest]

Cecelia, Harvey lives in Ft.Worth I think. Is that close to you?

C

[Guest guest]

Cecelia, I'm sorry, you don't live in Texas. Brain fog again.lol Maybe I

should pay attention to what I read. I don't know of anyone in Mississippi.

Pretty soon we should have all of the states and countries.lol Hope you're

having a better day.

Take care

Love

C

[Guest guest]

Alesia,

I'm not Heidi, but I know where Denton Texas is.

I'm from Mississippi. I've had RP for going on 7

years. Glad that their is someone closer than

California or Oregon. Hope you are having a great

day!

Cecelia

--- alescamp@... wrote:

> Hello Heidi,

> Where do you live in Oklahoma? I live in Denton

> Texas. Ever heard of it? I've

> had RP for 5 years. How 'bout you? ALesia

>

__________________________________________________

[Guest guest]

Thanks Cecelia. Alesia

[Guest guest]

Hi Cecelia, my name is Lucy and I am from North Carolina, but

originally from Alabama and to make it even closer, when I went to College,

I went to Livingston State College (then, they have changed the name to West

Alabama University now). We used to go over the state line and go to

Meridian,Miss. So, it is a small world. My mom now lives in Memphis, Tenn.

where my sister lives.

I was diagnosed with RP in Jan. 2000. I have probably had it for severl

years when I look back I remember things I had and they are too much like

flares to me. Mine started off in my ears at the same time in Jan. Both

ears swelled up after the pain started the night before down deep in my

ears.

Please write again soon, forgive me for just jumping in with both feet, but

when I saw you were from Miss. I could not resist. Love and Prayers, Lucy

from NC

Cecelia wrote:

> Alesia,

> I'm not Heidi, but I know where Denton Texas is.

> I'm from Mississippi. I've had RP for going on 7

> years. Glad that their is someone closer than

> California or Oregon. Hope you are having a great

> day!

> Cecelia

> --- alescamp@... wrote:

> > Hello Heidi,

> > Where do you live in Oklahoma? I live in Denton

> > Texas. Ever heard of it? I've

> > had RP for 5 years. How 'bout you? ALesia

> >

>

> __________________________________________________

>

[Guest guest]

Cecelia, Hope you are feeling better today. Have a wonderful weekend.

Love

C

[Guest guest]

Hi, Lucy,

I was glad to hear from you so don't give it

another thought about jumping in with both feet.

You probably never heard of Wesson, MS but that's

where I live. It a very small town about 45 miles

south of . I have had RP for about 6 1/2

years. I can tell you that the ear flare ups are very

frustrating to say the least. I was raised in

and moved to the country about seven years ago to be

close to my folks. I am really delighted to hear from

you. Write again soon.

Cecelia

--- Lucy wrote:

> Hi Cecelia, my name is Lucy and I am from

> North Carolina, but

> originally from Alabama and to make it even closer,

> when I went to College,

> I went to Livingston State College (then, they have

> changed the name to West

> Alabama University now). We used to go over the

> state line and go to

> Meridian,Miss. So, it is a small world. My mom now

> lives in Memphis, Tenn.

> where my sister lives.

>

> I was diagnosed with RP in Jan. 2000. I have

> probably had it for severl

> years when I look back I remember things I had and

> they are too much like

> flares to me. Mine started off in my ears at the

> same time in Jan. Both

> ears swelled up after the pain started the night

> before down deep in my

> ears.

>

> Please write again soon, forgive me for just jumping

> in with both feet, but

> when I saw you were from Miss. I could not resist.

> Love and Prayers, Lucy

> from NC

>

> Cecelia wrote:

>

> > Alesia,

> > I'm not Heidi, but I know where Denton Texas

> is.

> > I'm from Mississippi. I've had RP for going on 7

> > years. Glad that their is someone closer than

> > California or Oregon. Hope you are having a great

> > day!

> > Cecelia

> > --- alescamp@... wrote:

> > > Hello Heidi,

> > > Where do you live in Oklahoma? I live in Denton

> > > Texas. Ever heard of it? I've

> > > had RP for 5 years. How 'bout you? ALesia

> > >

> >

> > __________________________________________________

> >

[Guest guest]

,

Thanks for responding. I am enjoying hearing

from all of you regardless of where you live. You all

seem to be a great little extended family. It's

wonderful being able to talk to different folks and

sharing our problems and maybe getting some answers.

Cecelia

--- RCColloran@... wrote:

> Cecelia, I'm sorry, you don't live in Texas. Brain

> fog again.lol Maybe I

> should pay attention to what I read. I don't know

> of anyone in Mississippi.

> Pretty soon we should have all of the states and

> countries.lol Hope you're

> having a better day.

>

> Take care

> Love

> C

>

__________________________________________________

[Guest guest]

Hi Cecelia,

I just found out yesterday that I am the only patient that my ENT Clinic (3

Drs. and one Dr's Asst.). I am also the only one from NC on the List. It

is a rare disease and it is a tough one. I have never heard of so many

things that a disease can do to the human body! Mine was in bad enough

shape before I got this " thing " . Don't you just feel like screaming at

times? My daughter and her husband and 3 children live with me and I hope

that they don't end up feeling like they are here to nurse me. I have no

idea what to expect down the road as with any one of us, right? It is so

unpredictable.

I am glad to know that there is someone else from nearby my home town. You

take care and have a great weekend. Love and Prayers, Lucy in NC

Cecelia wrote:

> Hi, Lucy,

> I was glad to hear from you so don't give it

> another thought about jumping in with both feet.

> You probably never heard of Wesson, MS but that's

> where I live. It a very small town about 45 miles

> south of . I have had RP for about 6 1/2

> years. I can tell you that the ear flare ups are very

> frustrating to say the least. I was raised in

> and moved to the country about seven years ago to be

> close to my folks. I am really delighted to hear from

> you. Write again soon.

> Cecelia

> --- Lucy wrote:

> > Hi Cecelia, my name is Lucy and I am from

> > North Carolina, but

> > originally from Alabama and to make it even closer,

> > when I went to College,

> > I went to Livingston State College (then, they have

> > changed the name to West

> > Alabama University now). We used to go over the

> > state line and go to

> > Meridian,Miss. So, it is a small world. My mom now

> > lives in Memphis, Tenn.

> > where my sister lives.

> >

> > I was diagnosed with RP in Jan. 2000. I have

> > probably had it for severl

> > years when I look back I remember things I had and

> > they are too much like

> > flares to me. Mine started off in my ears at the

> > same time in Jan. Both

> > ears swelled up after the pain started the night

> > before down deep in my

> > ears.

> >

> > Please write again soon, forgive me for just jumping

> > in with both feet, but

> > when I saw you were from Miss. I could not resist.

> > Love and Prayers, Lucy

> > from NC

> >

> > Cecelia wrote:

> >

> > > Alesia,

> > > I'm not Heidi, but I know where Denton Texas

> > is.

> > > I'm from Mississippi. I've had RP for going on 7

> > > years. Glad that their is someone closer than

> > > California or Oregon. Hope you are having a great

> > > day!

> > > Cecelia

> > > --- alescamp@... wrote:

> > > > Hello Heidi,

> > > > Where do you live in Oklahoma? I live in Denton

> > > > Texas. Ever heard of it? I've

> > > > had RP for 5 years. How 'bout you? ALesia

> > > >

> > >

> > > __________________________________________________

> > >

[Guest guest]

Cecelia and Lucy, Good morning. Hope you both are feeling better today.

Cecelia, what' a body shape. It's been so long since I've had one I don't

remember. I use to be tooo thin, now I don't know what thin is, never did

make the in between stage. I know what you guys mean about just screaming.

Been there, done that. I too am very sensitive, even cry at commercials.

Probably wouldn't know if my eyes were having a flare, their red all the

time. I usually cry at happy things. Doesn't do any good to cry over the

bad. My girls used to make fun of me they were young, now that they are

grown, they too are criers. We all have to wear sun glasses when we go to

the movies because usually we come out crying.LOL Even catch my husband with

tears, so I guess it's in their genes. My sister in law and her two little

girls (6 and 8 years old) are coming Sat - Mon and my three daughters and one

grandaughter (3 years old will be here for the weekend. Just going to relax

and do nothing. Sounds pretty good to me. Lucy, how is ? Hope he is

doing better. They are so cute, I love to have them around. Don't you feel

like your family is nursing you, you do so much for them. HOpe both of you

have a nice, pain free weekend and don't work too hard.

Love you both

C

[Guest guest]

Cecelia, Boy am I confused and I bet you are too. I have you listed as

living in Miss. and also Tx. Just exactly where do you live. Geez, I'm

losing it . Hope you're doing better than I am today.lol Have a great

weekend. I think I'll just take a break.lol

Love,

[Guest guest]

Good Morning,

RP can be very frightening when you dwell on it so

I find its better to keep a positive attitude and try

to find out as much as I can about it. I have been to

so many doctors that it's financially draining and

very, very frustrating. I went to one ENT who did

the biopsy who didn't have a clue what RP was all

about and said all the sinus problems I have was not

related. However, everytime I get a flare up I have

snuffy nose itchy eyes etc... I went to a Infectious

Disease Doctor who wouldn't even talk to me about it.

He said I was better off not knowing. This only made

me more curious and a bit leary. I finally found a

young ENT who diagnosed the RP and sent me to a

rheumatologist. She however has not been very

helpful. She wants to see me everytime I have a flare

up and it's almost impossible to leave work at a

moments notice. She doesn't have to worry about

paying the bills. Ha! She also want prescribe

medications over the phone you have to go to see her.

I recently went to our local doctor who has been

wonderful. He said he would find out as much as he

could and look after me until I needed a specialist.

He has been great and gives me refills on my

prescribtions and has great empathy for me. He is

about my age and he wife has breast cancer so he knows

first hand the frustrations and heartaches with

disease.

Know what you mean about the body shape mine has

simply got no shape anymore.Ha!Ha! I tried one time

okay many times to find it again but to no avail.

It's a hopeless situation. After 40 I just give up

guess I'll just be content with me as I am. Yes, I

feel like screaming, stomping feet and whatever else I

can get away with without people thinking I'm crazy on

top of everything else. Seriously I have screamed just

to vent my frustrations. I felt better but it didn't

really help. My girls just thought I had finally lost

it. I do however cry alot, but I did that before. I'm

a real sensitve person and can cry at the drop of a

hat.

How old are your grandchildren? Bet they keep

you busy.

Well talk to you later. Have a wonderful day.

Cecelia

--- Lucy wrote:

> Hi Cecelia,

>

> I just found out yesterday that I am the only

> patient that my ENT Clinic (3

> Drs. and one Dr's Asst.). I am also the only one

> from NC on the List. It

> is a rare disease and it is a tough one. I have

> never heard of so many

> things that a disease can do to the human body!

> Mine was in bad enough

> shape before I got this " thing " . Don't you just

> feel like screaming at

> times? My daughter and her husband and 3 children

> live with me and I hope

> that they don't end up feeling like they are here to

> nurse me. I have no

> idea what to expect down the road as with any one of

> us, right? It is so

> unpredictable.

>

> I am glad to know that there is someone else from

> nearby my home town. You

> take care and have a great weekend. Love and

> Prayers, Lucy in NC

>

> Cecelia wrote:

>

> > Hi, Lucy,

> > I was glad to hear from you so don't give it

> > another thought about jumping in with both feet.

> > You probably never heard of Wesson, MS but that's

> > where I live. It a very small town about 45 miles

> > south of . I have had RP for about 6 1/2

> > years. I can tell you that the ear flare ups are

> very

> > frustrating to say the least. I was raised in

>

> > and moved to the country about seven years ago to

> be

> > close to my folks. I am really delighted to hear

> from

> > you. Write again soon.

> > Cecelia

> > --- Lucy wrote:

> > > Hi Cecelia, my name is Lucy and I am from

> > > North Carolina, but

> > > originally from Alabama and to make it even

> closer,

> > > when I went to College,

> > > I went to Livingston State College (then, they

> have

> > > changed the name to West

> > > Alabama University now). We used to go over the

> > > state line and go to

> > > Meridian,Miss. So, it is a small world. My mom

> now

> > > lives in Memphis, Tenn.

> > > where my sister lives.

> > >

> > > I was diagnosed with RP in Jan. 2000. I have

> > > probably had it for severl

> > > years when I look back I remember things I had

> and

> > > they are too much like

> > > flares to me. Mine started off in my ears at

> the

> > > same time in Jan. Both

> > > ears swelled up after the pain started the night

> > > before down deep in my

> > > ears.

> > >

> > > Please write again soon, forgive me for just

> jumping

> > > in with both feet, but

> > > when I saw you were from Miss. I could not

> resist.

> > > Love and Prayers, Lucy

> > > from NC

> > >

> > > Cecelia wrote:

> > >

> > > > Alesia,

> > > > I'm not Heidi, but I know where Denton

> Texas

> > > is.

> > > > I'm from Mississippi. I've had RP for going

> on 7

> > > > years. Glad that their is someone closer than

> > > > California or Oregon. Hope you are having a

> great

> > > > day!

> > > > Cecelia

> > > > --- alescamp@... wrote:

> > > > > Hello Heidi,

> > > > > Where do you live in Oklahoma? I live in

> Denton

> > > > > Texas. Ever heard of it? I've

> > > > > had RP for 5 years. How 'bout you? ALesia

> > > > >

> > > >

> > > >

> __________________________________________________

> > > >

[Guest guest]

,

Thanks, Hope you and yours have a safe and restful

week-end. Enjoy the holiday. My husband will be home

tonight and get to be here for the Memorial day

week-end including Monday. It's suppose to be very

hot. We are in hopes for a much needed rain to cool

things off a little.

Cecelia

--- RCColloran@... wrote:

> Cecelia, Hope you are feeling better today. Have a

> wonderful weekend.

>

> Love

> C

>

__________________________________________________

[Guest guest]

,

Ft. Worth is closer than CA or Oregon. Still about

a 6 hr drive from here. I don't think anyone lives

close to where I am. I kinda live in the country. I

have to drive a little to get to anywhere.

I am on medication but not on a day to day basis.

I have been on

prednisone,acyclovir,Famvir,Zyrtec,Claritin, nasonex,

flonase, celebrex and so many others I can remember.

I tried alot over the last seven years. Prednisone is

what I am on most of the time.

Cecelia

--- RCColloran@... wrote:

> Cecelia, Harvey lives in Ft.Worth I think.

> Is that close to you?

>

> C

>

__________________________________________________

[Guest guest]

,

I live in Mississippi. Don't give it a second

thought I stay confused. My children are finishing my

sentences for me now. I can't seem to think anymore.

Now that school is out I hope to be able to relax and

maybe my mind will come back. I seriously doubt it

though because the older I get the more I seem to lose

it. Comes with the territory I guess my children are

trying me crazy. Ha!

Cecelia

--- RCColloran@... wrote:

> Cecelia, Boy am I confused and I bet you are too. I

> have you listed as

> living in Miss. and also Tx. Just exactly where do

> you live. Geez, I'm

> losing it . Hope you're doing better than I am

> today.lol Have a great

> weekend. I think I'll just take a break.lol

>

> Love,

>

>

__________________________________________________

[Guest guest]

Cecelia, Join the group, I guess we've all lost our minds (if you find an

extra, I've got first call) lol How many children do you have? I have 3

daughters, 25, 22 and 19 and a step grandson who's 7 and a grandaughter who's

3. I love them all dearly. (I can say that now, they are all out of

school)lol I always loved summer when they were home, no strict schedule.

Have a nice weekend.

Love ya

C

[Guest guest]

Hi ,

I am going to learn how to put pictures on the email and send you a cute one of

when he was a butterfly in a play at his school. He was so cute and had

only been there for a few months before he was put in a play. Of course all of

them are cute, is just a " special little boy " and gets that extra little

bit of attention. Then they all require a different kind of attention too.

Jina (prounced Jenna), my daughter was still groggy when they asked for the

birth

certificate information, runs the house. If you don't watch her every minute,

" it

is your own fault " if she gets something she should not have. Jody is into the

gameboy thing and Pokemon.

My Dr. visit was good. Saw the Dr.'s Asst. He gave me prescription for

prednisone and said to call him if I start to flare, then he wants me to start

back on the prednisone. I am to finish the antibotic that I started last week.

I think the antibotic has been keeping me from flaring. He also started me on a

pill for preventing Osteoparisis. It is Actonel and I have to take it with an 8

oz. glass of water and one hour before breakfast. I am lucky to eat before my

other meds. It is hard to take a pill one hour before breakfast.

Hope you have a pain free weekend and holiday. I plan to go out of town with a

friend of mine to a meeting she has to attend and after that, I plan to be home

waiting for the mail to bring me some news about my SSD.

Love and Prayers, Lucy

RCColloran@... wrote:

> Cecelia and Lucy, Good morning. Hope you both are feeling better today.

> Cecelia, what' a body shape. It's been so long since I've had one I don't

> remember. I use to be tooo thin, now I don't know what thin is, never did

> make the in between stage. I know what you guys mean about just screaming.

> Been there, done that. I too am very sensitive, even cry at commercials.

> Probably wouldn't know if my eyes were having a flare, their red all the

> time. I usually cry at happy things. Doesn't do any good to cry over the

> bad. My girls used to make fun of me they were young, now that they are

> grown, they too are criers. We all have to wear sun glasses when we go to

> the movies because usually we come out crying.LOL Even catch my husband with

> tears, so I guess it's in their genes. My sister in law and her two little

> girls (6 and 8 years old) are coming Sat - Mon and my three daughters and one

> grandaughter (3 years old will be here for the weekend. Just going to relax

> and do nothing. Sounds pretty good to me. Lucy, how is ? Hope he is

> doing better. They are so cute, I love to have them around. Don't you feel

> like your family is nursing you, you do so much for them. HOpe both of you

> have a nice, pain free weekend and don't work too hard.

>

> Love you both

> C

>

> ------------------------------------------------------------------------

> Old school buds here:

> http://click./1/4057/1/_/32049/_/959358916/

> ------------------------------------------------------------------------

>

> hi and welcome. maybe we can come up with answers that our doctors can't

[Guest guest]

,

I have two daughters ages 15 and 13. They keep me

pretty busy. The 13 year old is head cheerleader and

will have cheer camp on the 1st and 2nd of June. Then

she starts cheer and tumble class on the 7th. She

also gets braces starting the 5th and finish up on the

13th. The 15 year old just had her dance recital glad

its over until september. She does have her drivers

license so she helps out alot. Fall or Summer its go,

go, go. I thought maybe I could take a breath and

relax. Who am I kidding! (mainly myself Ha!)

Have a wonderful week-end.

Cecelia

--- RCColloran@... wrote:

> Cecelia, Join the group, I guess we've all lost our

> minds (if you find an

> extra, I've got first call) lol How many children

> do you have? I have 3

> daughters, 25, 22 and 19 and a step grandson who's 7

> and a grandaughter who's

> 3. I love them all dearly. (I can say that now,

> they are all out of

> school)lol I always loved summer when they were

> home, no strict schedule.

> Have a nice weekend.

>

> Love ya

> C

>

__________________________________________________

[Guest guest]

In a message dated 5/26/00 10:38:21 AM Central Daylight Time,

CELA_12@... writes:

<< Know what you mean about the body shape mine has

simply got no shape anymore.Ha!Ha! I tried one time

okay many times to find it again but to no avail.

It's a hopeless situation. After 40 I just give up

guess I'll just be content with me as I am. >>

Rene here!! I was a size 4 to 6 petite, Jan. 1999. I'm 47 years old now. I

wear a size 16. What I shock this was to me. I had to buy a whole new

wardrobe. I have accepted my weight, but geez I'm still hoping that someday

I can reduce my pred and return to my normal size. (IS THAT WISHFUL THINKING

- WHAT THE HECK - A GIRL CAN HAVE HER DREAMS - LOL) By the way has anyone had

nose bleeds before. Yesterday my nose started bleeding out of the clear blue

sky. My Internist told me to put cold compress on it, and if it didn't stop

go to the emergency room. O Boy! Those doctors are pretty stupid when it

comes to the RP. However, when I tell them that I have lupus they become

more secure in their response. If anyone have info regarding nose bleeds

w/RP let me know.

Hey, How's in IlL, LOU and Ronnie? if you read this E-mail,

Please e-mail me privately - Need to talk to you.

Everyone have a good healthy day.

Love,

Rene'