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Marilyn R.

Wow I am sorry but maybe someone else can help you with this one. I have a hard time trying to tell people how to get there.LOL I mostly just wanted to say Hi to you and welcome to the group.

I was in Okieland for the weekend and just got home this morning. Wow there are several new members here now. Sorry that you or a loved one have RP but glad you found us all! This is just the greatest group of people you will ever get to meet! Now that I have met some of them I know that for a fact!

Hope to get to know you better! Where are you from?

My name is Glenda and I live in Springfield, Oregon. I am 44 and have had RP for 8 years now. I am happily married to the same guy for 27 yrs. and have 2 grown children and am raising my 6 yr. old granddaughter. I work a normal work week and am able to function on a pretty much normal basis's. (Okay not a word or Angie!LOL)

Take care and post us when you can

Lots of Love

Glenda

Re: Reminder - Wed day chat

I am having a problem!I put the wrong e-mail address in when registering for the web page and cannot participate in the chat room. How do I change it? I have tried "preferences" but it won't accept a change in my e-mail address.Help!Marilyn Romagni MRoma37617@...

---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.273 / Virus Database: 143 - Release Date: 8/16/2001

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Marilyn R.

Wow I am sorry but maybe someone else can help you with this one. I have a hard time trying to tell people how to get there.LOL I mostly just wanted to say Hi to you and welcome to the group.

I was in Okieland for the weekend and just got home this morning. Wow there are several new members here now. Sorry that you or a loved one have RP but glad you found us all! This is just the greatest group of people you will ever get to meet! Now that I have met some of them I know that for a fact!

Hope to get to know you better! Where are you from?

My name is Glenda and I live in Springfield, Oregon. I am 44 and have had RP for 8 years now. I am happily married to the same guy for 27 yrs. and have 2 grown children and am raising my 6 yr. old granddaughter. I work a normal work week and am able to function on a pretty much normal basis's. (Okay not a word or Angie!LOL)

Take care and post us when you can

Lots of Love

Glenda

Re: Reminder - Wed day chat

I am having a problem!I put the wrong e-mail address in when registering for the web page and cannot participate in the chat room. How do I change it? I have tried "preferences" but it won't accept a change in my e-mail address.Help!Marilyn Romagni MRoma37617@...

---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.273 / Virus Database: 143 - Release Date: 8/16/2001

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Hi Marilyn R,

I'm reading this message off of Glenda's message to you, because I haven't had time to check our site for messages while we were gone.

If yahoo won't accept your new addy, you will probably have to unsubscribe and re-subscribe using your right email addy.

Hope that helps and welcome to our group.

W

<>>>>>>>>>>>>>>>>>>>>>>

I put the wrong e-mail address in when registering for the web page and cannot participate in the chat room. How do I change it? I have tried "preferences" but it won't accept a change in my e-mail address.Help!Marilyn Romagni MRoma37617@...

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Hi Marilyn R,

I'm reading this message off of Glenda's message to you, because I haven't had time to check our site for messages while we were gone.

If yahoo won't accept your new addy, you will probably have to unsubscribe and re-subscribe using your right email addy.

Hope that helps and welcome to our group.

W

<>>>>>>>>>>>>>>>>>>>>>>

I put the wrong e-mail address in when registering for the web page and cannot participate in the chat room. How do I change it? I have tried "preferences" but it won't accept a change in my e-mail address.Help!Marilyn Romagni MRoma37617@...

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In a message dated 09/05/2001 1:19:34 PM Central Daylight Time,

eyeoreluv@... writes:

<< I was in Okieland for the weekend and just got home this morning. Wow

there are several new members here now.

Marilyn, sorry to hear you have RP, but so glad you found us. Glenda is

right, this IS the greatest bunch of peoiple you could hope to meet, and to

think we've all been united by this disease. Life is strange.

My name is Judy Ostry and I am 54 (I think! I stopped counting!) I live in

Hoffman Estates, IL with my honey, Jim Our 3>>32nd anniversary is coming up

in a couple of weeks. I have to adult daughters, who lives in

Denver - she has two daughters: Darian (almost 7) and Skylar, 2) my daughter

Kerri 26 is still at home,so I'm not suffering from " empty nest " syndrome

YET! I was dx with RP last year, so I guess I've had it about 14 months -

nice to be counting in months instead of years. Fortunately I was dx quickly

before much damage was done. My flares have been in my ears (Major) and my

eyes (no biggie). I've had the one major flare that lasted almost two months

before they got it under control with Prednisone and Methotrexate. What meds

are you on? Please tell us something about yourself and feel free to jump in

antime, we don't bite! Welcome and take care! Love, Judy

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In a message dated 09/05/2001 1:19:34 PM Central Daylight Time,

eyeoreluv@... writes:

<< I was in Okieland for the weekend and just got home this morning. Wow

there are several new members here now.

Marilyn, sorry to hear you have RP, but so glad you found us. Glenda is

right, this IS the greatest bunch of peoiple you could hope to meet, and to

think we've all been united by this disease. Life is strange.

My name is Judy Ostry and I am 54 (I think! I stopped counting!) I live in

Hoffman Estates, IL with my honey, Jim Our 3>>32nd anniversary is coming up

in a couple of weeks. I have to adult daughters, who lives in

Denver - she has two daughters: Darian (almost 7) and Skylar, 2) my daughter

Kerri 26 is still at home,so I'm not suffering from " empty nest " syndrome

YET! I was dx with RP last year, so I guess I've had it about 14 months -

nice to be counting in months instead of years. Fortunately I was dx quickly

before much damage was done. My flares have been in my ears (Major) and my

eyes (no biggie). I've had the one major flare that lasted almost two months

before they got it under control with Prednisone and Methotrexate. What meds

are you on? Please tell us something about yourself and feel free to jump in

antime, we don't bite! Welcome and take care! Love, Judy

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Hi Judy

So happy to hear from you. I was diagnosed with " presumed RP " 12-14 years

ago. It is now official! My first problem has been nasal septum problems.

It is basically gone with a big hole in my nose inside. I have been treated

with bunches of things but Imuran seems to work best for me. I have fibro

which sometimes complicates the situation. Osteoarthritis, glaucoma (my only

eye problem and probably hereditary) and multitude of allergies and lung

problems ( mild asthma).

My first ear flare was this summer. My ENT injected a steroid into the

inflammation and it went away.

I live in Savannah, GA, I have been here 15 years. I spent most of my life

in the Cleveland area. I am almost 63 years old. & 7 grandchildren. A son

and family in Bartlett, IL and a daughter and family in Aurora, OH.

My husband is a jewel! He loves to cook and helps me with anything I need

done.

He cooks Italian and all my friends are waiting for me to die so they can

steal him!

That is a bit of humor!

So nice to meet you. Lets keep talking. I have lots to say after so many

years of these problems.

Bye for now Judy

Marilyn R

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Hi Judy

So happy to hear from you. I was diagnosed with " presumed RP " 12-14 years

ago. It is now official! My first problem has been nasal septum problems.

It is basically gone with a big hole in my nose inside. I have been treated

with bunches of things but Imuran seems to work best for me. I have fibro

which sometimes complicates the situation. Osteoarthritis, glaucoma (my only

eye problem and probably hereditary) and multitude of allergies and lung

problems ( mild asthma).

My first ear flare was this summer. My ENT injected a steroid into the

inflammation and it went away.

I live in Savannah, GA, I have been here 15 years. I spent most of my life

in the Cleveland area. I am almost 63 years old. & 7 grandchildren. A son

and family in Bartlett, IL and a daughter and family in Aurora, OH.

My husband is a jewel! He loves to cook and helps me with anything I need

done.

He cooks Italian and all my friends are waiting for me to die so they can

steal him!

That is a bit of humor!

So nice to meet you. Lets keep talking. I have lots to say after so many

years of these problems.

Bye for now Judy

Marilyn R

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Marilyn R, Sounds like you have been treated by some pretty good drs. I know

Lucy has a hole in her septum too.. I think 2 now.

I also have fibro and a list of other stuff that complicates things too... I

know where you are coming from...

Your husband sounds great.... Maybe we should have our next reunion at your

house and let him cook Italian.. UMMMMMM !!! Better keep close tabs on

him..... he sounds like a keeper. lOL

I am almost 50 and have been married for almost 27 years... I have 3

daughters and one grandaughter ( Just can't seem to get that boy in there)

LOL My husband is a keeper too... My whole family is a great support team.

You just talk about anything you want and ask all the questions you want...

There is always someone here ready and willing to talk. ( Usually too much)

LOL

So glad to have you with us... You will find many great friends here...

hugs

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Marilyn R, Sounds like you have been treated by some pretty good drs. I know

Lucy has a hole in her septum too.. I think 2 now.

I also have fibro and a list of other stuff that complicates things too... I

know where you are coming from...

Your husband sounds great.... Maybe we should have our next reunion at your

house and let him cook Italian.. UMMMMMM !!! Better keep close tabs on

him..... he sounds like a keeper. lOL

I am almost 50 and have been married for almost 27 years... I have 3

daughters and one grandaughter ( Just can't seem to get that boy in there)

LOL My husband is a keeper too... My whole family is a great support team.

You just talk about anything you want and ask all the questions you want...

There is always someone here ready and willing to talk. ( Usually too much)

LOL

So glad to have you with us... You will find many great friends here...

hugs

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Marilyn R.

Glad you found the group! It sounds like you have seen a few rough times with the RP. Sorry you have RP but at least you have a great group of people who all share the same thing in common.

Sounds like that hubby is a keeper! Wish my hubby like to cook!LOL

My name is Glenda and I live in Springfield, Oregon. I am 44 yrs. old and have been married for 27 yrs. I have two grown children and am now raising my 6 yr. old granddaughter. I lead a fairly normal life and am able to work a 40 hour a week job. I have had RP for 8 yrs now and take Imuran and Vioxx or pred when I flare.(hate the later)

Keep posting so we get to know you better! We are all here for you when you need us. We laugh, we are a shoulder when you need one and enjoy hearing about everything.

Take care!

Lots of love

Glenda

---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.277 / Virus Database: 146 - Release Date: 9/5/2001

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Marilyn R.

Glad you found the group! It sounds like you have seen a few rough times with the RP. Sorry you have RP but at least you have a great group of people who all share the same thing in common.

Sounds like that hubby is a keeper! Wish my hubby like to cook!LOL

My name is Glenda and I live in Springfield, Oregon. I am 44 yrs. old and have been married for 27 yrs. I have two grown children and am now raising my 6 yr. old granddaughter. I lead a fairly normal life and am able to work a 40 hour a week job. I have had RP for 8 yrs now and take Imuran and Vioxx or pred when I flare.(hate the later)

Keep posting so we get to know you better! We are all here for you when you need us. We laugh, we are a shoulder when you need one and enjoy hearing about everything.

Take care!

Lots of love

Glenda

---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.277 / Virus Database: 146 - Release Date: 9/5/2001

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----- Original Message -----

Hi Marilyn R.,

I live just west of Cleveland, in North Ridgeville. What part of the Cleveland area are you from?

Hugs,

Sandy

I live in Savannah, GA, I have been here 15 years. I spent most of my life in the Cleveland area. I am almost 63 years old. & 7 grandchildren. A son and family in Bartlett, IL and a daughter and family in Aurora, OH.My husband is a jewel! He loves to cook and helps me with anything I need done.He cooks Italian and all my friends are waiting for me to die so they can steal him!That is a bit of humor!So nice to meet you. Lets keep talking. I have lots to say after so many years of these problems.Bye for now JudyMarilyn RDISCLAIMER!!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

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----- Original Message -----

Hi Marilyn R.,

I live just west of Cleveland, in North Ridgeville. What part of the Cleveland area are you from?

Hugs,

Sandy

I live in Savannah, GA, I have been here 15 years. I spent most of my life in the Cleveland area. I am almost 63 years old. & 7 grandchildren. A son and family in Bartlett, IL and a daughter and family in Aurora, OH.My husband is a jewel! He loves to cook and helps me with anything I need done.He cooks Italian and all my friends are waiting for me to die so they can steal him!That is a bit of humor!So nice to meet you. Lets keep talking. I have lots to say after so many years of these problems.Bye for now JudyMarilyn RDISCLAIMER!!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

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We moved from Chagrin Falls Ohio to Savannah 15 years ago. We lived in

Geauga County, the snowiest county in Ohio.

We had the Western Reserve Convalescent Home and WR Extended Care Facility in

Kirtland, OH and also a skilled facility in Erie, PA.

I still get spooked by the Budweiser Horses in the Christmas commercials. I

have done enough snow in my lifetime!

Keep in touch. LOL MR

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We moved from Chagrin Falls Ohio to Savannah 15 years ago. We lived in

Geauga County, the snowiest county in Ohio.

We had the Western Reserve Convalescent Home and WR Extended Care Facility in

Kirtland, OH and also a skilled facility in Erie, PA.

I still get spooked by the Budweiser Horses in the Christmas commercials. I

have done enough snow in my lifetime!

Keep in touch. LOL MR

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Marilyn,

You mean you don't like the snow? LOL

I love it as long as I'm looking at it from the window and don't have to drive in it.

Hugs,

Sandy

We moved from Chagrin Falls Ohio to Savannah 15 years ago. We lived in Geauga County, the snowiest county in Ohio.We had the Western Reserve Convalescent Home and WR Extended Care Facility in Kirtland, OH and also a skilled facility in Erie, PA. I still get spooked by the Budweiser Horses in the Christmas commercials. I have done enough snow in my lifetime!Keep in touch. LOL MRDISCLAIMER!!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

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Marilyn,

You mean you don't like the snow? LOL

I love it as long as I'm looking at it from the window and don't have to drive in it.

Hugs,

Sandy

We moved from Chagrin Falls Ohio to Savannah 15 years ago. We lived in Geauga County, the snowiest county in Ohio.We had the Western Reserve Convalescent Home and WR Extended Care Facility in Kirtland, OH and also a skilled facility in Erie, PA. I still get spooked by the Budweiser Horses in the Christmas commercials. I have done enough snow in my lifetime!Keep in touch. LOL MRDISCLAIMER!!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

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Hi Marilyn R.

Hope you don't mind me jumping in.I'm from Geauga Co. Montville just East of

Chardon.The real snow belt.I know what you mean about not liking the

weather. My husband hates it more, he works for O.D.O.T. I think I'd like

Savannah myself. Ann

Re: Marilyn R.

> We moved from Chagrin Falls Ohio to Savannah 15 years ago. We lived in

> Geauga County, the snowiest county in Ohio.

>

> We had the Western Reserve Convalescent Home and WR Extended Care Facility

in

> Kirtland, OH and also a skilled facility in Erie, PA.

>

> I still get spooked by the Budweiser Horses in the Christmas commercials.

I

> have done enough snow in my lifetime!

>

> Keep in touch. LOL MR

>

>

> 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

>

>

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Hi Marilyn R.

Hope you don't mind me jumping in.I'm from Geauga Co. Montville just East of

Chardon.The real snow belt.I know what you mean about not liking the

weather. My husband hates it more, he works for O.D.O.T. I think I'd like

Savannah myself. Ann

Re: Marilyn R.

> We moved from Chagrin Falls Ohio to Savannah 15 years ago. We lived in

> Geauga County, the snowiest county in Ohio.

>

> We had the Western Reserve Convalescent Home and WR Extended Care Facility

in

> Kirtland, OH and also a skilled facility in Erie, PA.

>

> I still get spooked by the Budweiser Horses in the Christmas commercials.

I

> have done enough snow in my lifetime!

>

> Keep in touch. LOL MR

>

>

> 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

>

>

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So glad to hear from northeastern Ohioans. Our daughter lives in Aurora so

we get to that area several times a year. We should stay in touch. Who is

your Rhemy in that area now? Before I moved to Savannah I went the

Sheahen, MD in So Euclid. He first diagnosed Fibro in 1980 or 81 when it was

still fibrostitis.

Good to hear from you.

Marilyn R

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So glad to hear from northeastern Ohioans. Our daughter lives in Aurora so

we get to that area several times a year. We should stay in touch. Who is

your Rhemy in that area now? Before I moved to Savannah I went the

Sheahen, MD in So Euclid. He first diagnosed Fibro in 1980 or 81 when it was

still fibrostitis.

Good to hear from you.

Marilyn R

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In a message dated 09/09/2001 7:49:46 PM Central Daylight Time,

MRoma37617@... writes:

<< He cooks Italian and all my friends are waiting for me to die so they can

steal him!

That is a bit of humor! >>

Marilyn, I understand that humor perfectly! My friends have wanted to clone

Jim for years, but I won't share him! He, too, does just about everything

around here. Between strokes, seizures, back surgeries and now RP, he is

just thankful to still have me around...go figure! But he is one in a

gazillion and I am so greatful to have him! I just feel so guilty that I

can't do more around here. About all I do is the wash and dust!

Occasionally I cook,but I can't even stand long enough to ppeel potatoes, it

is so frustrating! Actually I love Italian cooking ( my spaghetti and

lasagna are " awesome " to quote my kids and friends! At least my taste buds

work just fine (unfortunately, my appetite does too!)

I guess I'm not doing my part in the grandchildren deparment, only have two

in Colorado, so I don't get to see them as much as I would like, but what can

you do? Keep writing, and take care! Love, Judy

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In a message dated 09/09/2001 7:49:46 PM Central Daylight Time,

MRoma37617@... writes:

<< He cooks Italian and all my friends are waiting for me to die so they can

steal him!

That is a bit of humor! >>

Marilyn, I understand that humor perfectly! My friends have wanted to clone

Jim for years, but I won't share him! He, too, does just about everything

around here. Between strokes, seizures, back surgeries and now RP, he is

just thankful to still have me around...go figure! But he is one in a

gazillion and I am so greatful to have him! I just feel so guilty that I

can't do more around here. About all I do is the wash and dust!

Occasionally I cook,but I can't even stand long enough to ppeel potatoes, it

is so frustrating! Actually I love Italian cooking ( my spaghetti and

lasagna are " awesome " to quote my kids and friends! At least my taste buds

work just fine (unfortunately, my appetite does too!)

I guess I'm not doing my part in the grandchildren deparment, only have two

in Colorado, so I don't get to see them as much as I would like, but what can

you do? Keep writing, and take care! Love, Judy

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Thanks for your post, Judy!

The really SAD thing about my husband's wonderful cooking is I can't taste it

or smell it! The first of March I lost my sense of smell and taste. My RP

started in my nose some 12 or more years ago and I don't have hardly any

nasal septum left.

Multitudes of allergies and chronic sinusitis, asthma etc have taken their

toll.

I finally went to a neurologist last week and he ordered a brain scan to make

sure the problem isn't caused by a tumor. Haven't had the results as yet.

When I am cooking and something needs tasting I say to Gus " Mikey come taste

this. " Sounds like you have a sweetheart too! We have much to be thankful

for.

LOL Marilyn R

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