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Since my computer was at the shop for a week, I did not know about Virginia

's death until today, and was greatly saddened by it.

She was a wonderful woman and has left behind a beautiful legacy for all

who suffer from RLS. I'd had it all my life (over 70 years) and only last

year did I learn about it and about Sleep Thief. I read the book and took

it to my doctor. He tried Sinemet first, it didn't work, and then he tried

Klonopin. I have not had any RLS symptoms since that time, and I

constantly blessed Virginia for telling about her trials in getting doctors

to recognize our affliction. I wrote her, telling her how happy I was to

be rid of RLS, and received a very warm loving letter from her in return.

I shall never forget how her aggressive fight to bring RLS to the doctors'

attention has blessed me, as well as many others.

Lynne Gessner

sdale, AZ

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  • 2 years later...
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Took a long timeto figure it out. Idid not tell you that my husband of 44 years passed in Oct. While going tothe DR with him, I noiticed this imflamation in my left ear.

Did,nt pay to much attention to it. One day, when we were at the doctors office I

decided tosee my internist. She prescribed antibiotics. After two weeks, sent to Ear doctor. More anti biotics. Mean time my husband passes. Had to go to ER and have a pic line inserted so as to do IV antibiotics at home. 2 weeks of that

and they could,nt get the line out. Had to go to Intervention radiology to get it out.

And it has been down hill all the way.

Virginia

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Took a long timeto figure it out. Idid not tell you that my husband of 44 years passed in Oct. While going tothe DR with him, I noiticed this imflamation in my left ear.

Did,nt pay to much attention to it. One day, when we were at the doctors office I

decided tosee my internist. She prescribed antibiotics. After two weeks, sent to Ear doctor. More anti biotics. Mean time my husband passes. Had to go to ER and have a pic line inserted so as to do IV antibiotics at home. 2 weeks of that

and they could,nt get the line out. Had to go to Intervention radiology to get it out.

And it has been down hill all the way.

Virginia

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Took a long timeto figure it out. Idid not tell you that my husband of 44 years passed in Oct. While going tothe DR with him, I noiticed this imflamation in my left ear.

Did,nt pay to much attention to it. One day, when we were at the doctors office I

decided tosee my internist. She prescribed antibiotics. After two weeks, sent to Ear doctor. More anti biotics. Mean time my husband passes. Had to go to ER and have a pic line inserted so as to do IV antibiotics at home. 2 weeks of that

and they could,nt get the line out. Had to go to Intervention radiology to get it out.

And it has been down hill all the way.

Virginia

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Virginia

You are doing great at the posting. Sorry to hear

that you are having a time with it. How long have you

had RP? They will get it straightened out and then

maybe the flares wont be so bad! Sending good

thoughts and prayers your way! Just jump in anytime

you want. We are all here to here for you!

Lots of Love

Glenda

--- vrhgram@... wrote:

> Ilive in Chicago near Midway airport. Am currently

> seeing a rheumy at Rush.

> She prescribed Dapsone 222 mg and prednisone.

> Started with 40 now down to 6.

> Had a flare yesterday, today a lot of drainage from

> biopsy site. Relieved

> the pressure

> Feeling much better. New at this confuser,so please

> bear with me. Any help

> is

> appreciated. Happy Easter.

> Virginia

>

__________________________________________________

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Virginia

You are doing great at the posting. Sorry to hear

that you are having a time with it. How long have you

had RP? They will get it straightened out and then

maybe the flares wont be so bad! Sending good

thoughts and prayers your way! Just jump in anytime

you want. We are all here to here for you!

Lots of Love

Glenda

--- vrhgram@... wrote:

> Ilive in Chicago near Midway airport. Am currently

> seeing a rheumy at Rush.

> She prescribed Dapsone 222 mg and prednisone.

> Started with 40 now down to 6.

> Had a flare yesterday, today a lot of drainage from

> biopsy site. Relieved

> the pressure

> Feeling much better. New at this confuser,so please

> bear with me. Any help

> is

> appreciated. Happy Easter.

> Virginia

>

__________________________________________________

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Virginia,

I am so sorry that you have really had a time of it!

If there is anything I can do I am here for you. Life

can be the pits but I don't want to think of the

alternatives. I will be sending good thoughts and

prayers your way that is for sure! Again I am here

for you and so is this great group of people.

Lots of Love

Glenda

__________________________________________________

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Virginia,

I am so sorry that you have really had a time of it!

If there is anything I can do I am here for you. Life

can be the pits but I don't want to think of the

alternatives. I will be sending good thoughts and

prayers your way that is for sure! Again I am here

for you and so is this great group of people.

Lots of Love

Glenda

__________________________________________________

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Guest guest

Virginia,

I am so sorry that you have really had a time of it!

If there is anything I can do I am here for you. Life

can be the pits but I don't want to think of the

alternatives. I will be sending good thoughts and

prayers your way that is for sure! Again I am here

for you and so is this great group of people.

Lots of Love

Glenda

__________________________________________________

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Guest guest

HI Virginia,

I'm so sorry to hear you have had so many troubles. I pray that things will get better for you each and everyday.

I hate you didn't make it to chat, I couldn't get into it last night either, that happens sometimes.

Please take care....

Love,

Lu

Took a long timeto figure it out. Idid not tell you that my husband of 44 years passed in Oct. While going tothe DR with him, I noiticed this imflamation in my left ear.

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HI Virginia,

I'm so sorry to hear you have had so many troubles. I pray that things will get better for you each and everyday.

I hate you didn't make it to chat, I couldn't get into it last night either, that happens sometimes.

Please take care....

Love,

Lu

Took a long timeto figure it out. Idid not tell you that my husband of 44 years passed in Oct. While going tothe DR with him, I noiticed this imflamation in my left ear.

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Virginia, my sympathy on losing your husband. You haven't had time to deal

with that and now you have RP? Welcome to the roller coaster. All I can

tell you is to keep your chin up and find something to laugh at each day. You

won't believe how much laughter can do. I know you haven't had much to laugh

about, but stick around us, we always come up with something! Love, Judy O

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Virginia, my sympathy on losing your husband. You haven't had time to deal

with that and now you have RP? Welcome to the roller coaster. All I can

tell you is to keep your chin up and find something to laugh at each day. You

won't believe how much laughter can do. I know you haven't had much to laugh

about, but stick around us, we always come up with something! Love, Judy O

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Guest guest

Virginia, my sympathy on losing your husband. You haven't had time to deal

with that and now you have RP? Welcome to the roller coaster. All I can

tell you is to keep your chin up and find something to laugh at each day. You

won't believe how much laughter can do. I know you haven't had much to laugh

about, but stick around us, we always come up with something! Love, Judy O

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  • 1 year later...

God gives me the strength i need, if he

> wants me to die, so be it, if he wants me to be healed, then so be

> it. i will just ride the waves as they come not prepare or expect

> them before hand.

How about if you run this line by your pastor. Also, have any of the

people whom you consider your mentors faced a serious illness? I consider

myself religious and agree completely with the first sentence I snipped

here. But I do feel that it's our obligation to make the efforts

necessary, all the while viewing the medical professionals involved as

merely Gd's messengers (even if they have more inflated views of

themselves ;-)

Like you, I've been coping without my mother's input since I was 17 but I

didn't face Graves till I was 35. Trust in Gd, and any of His messengers

you may find here giving you good advice. Taking this seriously, in the

form of keeping records, doesn't have to mean it becomes an obsession.

By far, the easiest treatment is with the medication, and that's why

everyone here has been doing there best to make sure that the drugs were

given their best shot. Being hypo can be complicated - only this week

there was a discussion about how to take the hypothyroid replacement

properly, timing, etc. (Jody, , and Zoey about Thyrolar). Usually

getting onto the proper dose is easier after surgery than after RAI.

You'll just have the added complications of medications from your other

conditions.

Take care, Fay

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Okay, this is edging a bit off topic and into the zone that might give a

moderator (like I am :) pause. But I can't resist.

A loooong time ago, II was in a women's support group and one of our members

announced that she was turning over her health care to God and would let Him

take over.

THe therapist advised her to give God some help along the way. I've always

loved that advice. One can be led or follow, according to one's religious

views, but why not offer to be an active, helpful participant in the situation?

I guess that this echoes what FAy says, but I " ll never forget that therapist

saying: Great. Why don't you give God some help on this one?

B

Re: virginia

God gives me the strength i need, if he

> wants me to die, so be it, if he wants me to be healed, then so be

> it. i will just ride the waves as they come not prepare or expect

> them before hand.

How about if you run this line by your pastor. Also, have any of the

people whom you consider your mentors faced a serious illness? I consider

myself religious and agree completely with the first sentence I snipped

here. But I do feel that it's our obligation to make the efforts

necessary, all the while viewing the medical professionals involved as

merely Gd's messengers (even if they have more inflated views of

themselves ;-)

Like you, I've been coping without my mother's input since I was 17 but I

didn't face Graves till I was 35. Trust in Gd, and any of His messengers

you may find here giving you good advice. Taking this seriously, in the

form of keeping records, doesn't have to mean it becomes an obsession.

By far, the easiest treatment is with the medication, and that's why

everyone here has been doing there best to make sure that the drugs were

given their best shot. Being hypo can be complicated - only this week

there was a discussion about how to take the hypothyroid replacement

properly, timing, etc. (Jody, , and Zoey about Thyrolar). Usually

getting onto the proper dose is easier after surgery than after RAI.

You'll just have the added complications of medications from your other

conditions.

Take care, Fay

________________________________________________________________

Sign Up for Juno Platinum Internet Access Today

Only $9.95 per month!

Visit www.juno.com

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