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Hi .....OH BOY, does this mean the list is in trouble now that your

sister has joined....LOL... just kidding. We're happy to have her with

us.

I talked to Greg on Thursday night. He was called back to Australia

because his job needed him. He really felt bad about leaving Helen.

Thursday was the first day that Helen didn't wake up when he entered the

room. She slept the whole time and the doctor said that she might do

that from here on out. She has had no food for 8 days or more. She

wanted to drink some juice about 5 days ago and took one sip and choked

on it. The nurse told Greg that it was going directly into her lungs.

The medical staff is very surprised she has lasted this long. On

Thursday for the first time, her blood pressure was dropping. Last

Monday they put her in the nursing wing. Nothing is being given to her

at all....

I really felt bad for Greg.. he kept saying over and over how much he

loved her and that she had so much to offer. He did tell me that before

she got sick she was engaged to be married. When she started to slow

down and not feel to well, this guy left her.... adding one more thing

she didn't need. He wanted to stay with her but he didn't think it

would be this long. This was his third trip to Hawaii this year just to

see her.

I'll let you all know when she's finally on her way home.

I had snow here yesterday. Put a damper on working down at the barns.

Today is freezing cold, snow has all melted but we're expecting some

rain later tonight.

I've told everyone that all my horses are in there mid to late twenties.

In the course of growing older... a couple of the young ones have

decided it's time to push the old ladies out of the barn into the cold.

Thats why I'm adding onto the barn so these older ones will also have

shelter. They couldn't have done this last spring.. No, they have to

wait until winter is on us.

Hope everyone is having a good weekend.

Take care,

Vicki-PM

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.... I agree... At time I can hardly wait until I cast this old bod

aside.... that's when the real fun begins... I hear you can eat all you

want...LOL

Hey, I think it's really great your sister joined. It's not only you

that is suffering with this disease, it's also your family...so they can

whine also....LOL ..... who knows, we just might hear some great stories

about you....

Very chilly here tonight. Already 40° when I fed....

Take care,

Vicki-pm

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So sorry to hear about Helen. I am glad however that she is now at peace and in the Lord's hands. She is much happier there.

"May the last sound you hear tonight be a purrrrrrrrr"

>^..^<

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Hi Mike

I have to say I love your sense of humor. I can relate to dreaming of

food of ANY kind. I've had many cravings since I was diagnosed. First

it was salads all the time, then it was a huge slab of meat, then I went

to cheese.... I want a little sweetness every once in a while but not

all the time. Thank God!

I take it you don't have blood workup done each month. I have

everything done once a month and a CTscan every three months. It's

become old hat for me now. Although that might change when I go on

Medicare.

" Hulking stomach on legs " ....... good way of putting it. I can relate!

Four miles of walk/jog....wow, I have trouble walking just a few feet.

I really think your going to get back in shape in no time.

Aaaaaah, our wonderful presidential election... my gosh...Well at least

Canada will see just how smart we Americans are.

I'm sure this won't be over with until sometime in Dec. Enjoy the

fireworks tonight.... take care,

Vicki-pm

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Hi Vicki.

The only bloodwork I have been getting before this was the CPK and

sediment counts, on about a four-week interval.

Up here in the Great White North, we are watching what is going on in

Florida with great interest. It is intriguing to see how two

different political parties can use the same set of facts to arrive

at two completely opposite conclusions. If it's any consolation, the

same thing happens here in Canada.

It is starting to look like we may know who our new Prime Minister is

before you get a handle on your new President -- after all, our

election is only two weeks away. Whether the leader we choose is any

better than the one you (may) have chosen remains to be seen.

Take care.

Mike B

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I do agree with you. The news media will do anything to get the

lead story and say anything to get people to stay tuned to there

station. Makes me sick to listen to them. I also wish it was over

with.

Vicki

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Vicki: I forgot to mention that the dr. gave me shot in my tucus " med "

something. Said it was a type of cortisone to help with pain. But it may not

help for few days.

Are you aware of other inflammatory meds (anti) other than Relafan, which I

am convinced is not working for me. ANd also, the sleep pills are clearly not

working. But make my head spin like shots of morphine, but don't help pain!

ANA level was high but that is just the Lupus. (that's what they tell me) Why

does everyone else check theirs?

THanks for being there.

Deneen

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Hi Everyone... I just read the post from about Cari moving. I

guess the Christmas rush has already started for Webtv since I haven't

received that email from Cari. Made me start to look at the dates of

the emails coming in. Some are 2 days old. Oh well, that's better than

a week like it was last year. Teddi, I'm sure your going to beat me in

buying a computer before I get one.

Cari... Your moving? My gosh.... was it because you didn't have enough

to do so you thought moving might fill that gap?

Will you be moved into your new home by Christmas?

I think has something there with s Prednisone.... you should

be able to just call the doctor and ask if you can lower it just a tad.

I feel for your doctor and his daughter. I hope and pray that it turns

out well.

Fern, how are you tonight, any better? You've had a time with that

cold. Know that we miss you and wish you a speedy recovery. Now that

has found a good doctor, we need to get Fern one also.

Elaine.... I also want to thank you for the updates on Fern.... we get

worried if we don't hear from someone for a while.

you mentioned finding a female rheumatologist..... I get to see my

new female doctor next month. Dr. Kempf had already talked with her

before he left the clinic and said she was really nice and very well

educated....will be an asset to the clinic. So, we'll see how it goes.

POOR OVERWORKED LAWYERS in Fla.????? Oh please.... Jay Leno the other

night said that Gore had his team of 500 lawyers go down to Fla.... I

bet it's a mad house down there. If nothing else, the late night talk

shows have enough material to use for the next 4 yrs.

I've also been in bed most of the day. Went to the grocery store than

to Home Depot yesterday and I barely made it home. I also went down to

the barn to feed my girls and decided to stay down there for about 1/2

hr to catch my breath and cool down. One good thing about that, my

mare decided to give me a back rub while I sat in her stall. Can't beat

that!

Deneen, how are you doing today? Feel any better?

Ok, I hope everyone had a good Saturday and will have an even better

Sunday. I plan on doing a little work tomorrow but not much.

Take care,

Vicki-PM

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Dear Everyone,

I am behind with mail a few days. I am feeling good. I went to the

pulmonologist last week and my lungs look grand--no scarring and they sound

clear. WOOOOOOOOOOOOOOOOHOOOOOOOOOOOOOOOOOOOOO!!!

Ann-Marie

P.S. Our " Mother General " (aka " Number 1 Nun " or " Nun in Charge " ) is here

for about six weeks. We are an international community..she is from India.

I love her--am enchanted, actually, and don't feel as though I have to be on

my best behavior. Actually, that feeling probably died a while ago...

________________________________________________________________________________\

_____

Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

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Ann-Marie.... great news.... You got a clean bill of health... Well, not

really but having your lungs sound good is wonderful. I'm sure your

Mother General not only loves you but she also loves your great sense of

humor...I know I do! I hope there is good weather for her stay.

Take care,

Vicki

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- Yippee!!!! So glad your trip was so

successful. Finally, answers to your many questions.

I am so happy for you.

We will begin to move all of our stuff this Sat and

will be officially moved on Dec. 3rd. We are in

Hilton Head for Thanksgiving. My parents bring us all

here every year for the holiday. My little family of

five has terrible colds and are miserable. is

the only healthy one! It is very cold here! I am

posting on my brother-in-laws laptop computer and it

is very frustrating. I can't even get 's Dr. to

the phone to see if we can lower his prendisone. I

faxed my recent concerns over his bruises and haven't

heard anything. We are so lucky that is doing

so well. I wonder about her other patients and if

they are having trouble communicating with her.

--- julie steinmuller wrote:

> Hello everyone,

> Was so glad to hear from you Cari! I'd say that yes,

> you have a bit

> of chaos in your life right not, but what fortune to

> find a place

> youlove right nearby! When will you actually be out

> of the old and

> into the new? How far do you have to go for

> Thanksgiving? So happy

> is doing so very well. It's too bad about your

> doctor's

> daughter- I hope things will turn out OK for them.

> You can't get an

> OK to start tapering very gradually by phone, or

> does he want to run

> bblod tests first?

> Elaine, thank you SO much for keeping us posted on

> Fern. Please tell

> her my thoughts, love and and prayers are with her

> and we so look

> forward to when she can get back online. I so wish

> she could kick

> this bug she's been dealing with. And you- how are

> you feeling aside

> from your foot? Is your doctor going to take out the

> hardware soon or

> not?

> - about time someone had real good news about

> a doctor visit-

> and that you and your sister had a bunch of laughs

> to boot! Wish I

> could find a female rheumatologist- not that I've

> tried yet....

> Tell us more about what she talked about re: your DX

> and make sure

> you let us know about the blod test results.

> Anne- Marie,, send your prayers to all the poor,

> overworked lawyers

> in Flor-Duh! They certainly need some divine

> guidance! How are YOU

> feeling!!! You don't tell us much but I want to

> know.

> Welcome to the new member, as always. Hope everyone

> else checks in.As

> for me- after feeling not bad for a while, have not

> had a great week-

> but sleeping, sitting and eating is just fine with

> me! It IS time to

> hibernate, after all. Love

>

>

>

>

>

>

>

__________________________________________________

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Hi Vicki, We are having to move kind of unexpectedly.

We would of had to move in Jan. but fell in love with

a house and didn't want to take the chance that it

wouldn't be available. first became sick two

x-masses ago. He started walking stiff legged on

Christmas eve and we received his Dx of Duchenne MD on

New Years. His correct Dx came in the last of Jan

'99. Last Christmas he was sluggish because of such

cold weather and I think the excitement of the season.

He was very sick on Christmas day with bad stomach

cramps. Christmas has a grey cloud over it and for

me, brings bad memories. Although, it is a stressful

time to be moving. I am looking forward to being in a

new home for the holidays and starting new, happy

memories. My sister and her family will be joining us

in our new home and I am actually beginning to look

forward to this Christmas and getting caught up in the

Children't excitement.

--- anzavic@... wrote:

>

> Hi Everyone... I just read the post from about

> Cari moving. I

> guess the Christmas rush has already started for

> Webtv since I haven't

> received that email from Cari. Made me start to

> look at the dates of

> the emails coming in. Some are 2 days old. Oh

> well, that's better than

> a week like it was last year. Teddi, I'm sure your

> going to beat me in

> buying a computer before I get one.

>

> Cari... Your moving? My gosh.... was it because you

> didn't have enough

> to do so you thought moving might fill that gap?

> Will you be moved into your new home by Christmas?

>

> I think has something there with s

> Prednisone.... you should

> be able to just call the doctor and ask if you can

> lower it just a tad.

> I feel for your doctor and his daughter. I hope and

> pray that it turns

> out well.

>

> Fern, how are you tonight, any better? You've had a

> time with that

> cold. Know that we miss you and wish you a speedy

> recovery. Now that

> has found a good doctor, we need to get Fern

> one also.

>

> Elaine.... I also want to thank you for the updates

> on Fern.... we get

> worried if we don't hear from someone for a while.

>

> you mentioned finding a female

> rheumatologist..... I get to see my

> new female doctor next month. Dr. Kempf had already

> talked with her

> before he left the clinic and said she was really

> nice and very well

> educated....will be an asset to the clinic. So,

> we'll see how it goes.

>

> POOR OVERWORKED LAWYERS in Fla.????? Oh please....

> Jay Leno the other

> night said that Gore had his team of 500 lawyers go

> down to Fla.... I

> bet it's a mad house down there. If nothing else,

> the late night talk

> shows have enough material to use for the next 4

> yrs.

>

> I've also been in bed most of the day. Went to the

> grocery store than

> to Home Depot yesterday and I barely made it home.

> I also went down to

> the barn to feed my girls and decided to stay down

> there for about 1/2

> hr to catch my breath and cool down. One good

> thing about that, my

> mare decided to give me a back rub while I sat in

> her stall. Can't beat

> that!

>

> Deneen, how are you doing today? Feel any better?

>

> Ok, I hope everyone had a good Saturday and will

> have an even better

> Sunday. I plan on doing a little work tomorrow but

> not much.

>

> Take care,

> Vicki-PM

>

>

__________________________________________________

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Hi .... What was the outcome of your husbands friend that collapsed

at work?

Last we heard was that he was in a coma. I wondered if he was on high

dosage of Prednisone of course the high blood pressure alone could have

caused that. My Uncle died of cerebral hemorrhage

when he was just 52.

Vicki

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Awwwwwwww - tell her to give you the pet paw number and Ill check it out. Hope you are all feeling better. You are in my prayers.

"May the last sound you hear tonight be a purrrrrrrrr"

>^..^<

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Good Morning Everyone

I agree with you on the degree of pain a person goes through when

a pet passes away. It's been almost 6 years since I lost my little dog

and it's still very painful for me just easier to accept.

The burning sensation is in the muscles itself. It almost sounds like

she has RA or OA. Now, the JERK that did her lab tests needs to have a

head adjustment.... but I really recommend that she gets a copy of the

tests. The jerk doctor I first saw when I started having my problems

said all my tests came back NORMAL..... But when I had them make a copy

of my file (years later) and looked back at the tests.... I found out

they were not normal at all. I first tested positive in 93 on my ANA

test and my CPK was elevated in 95. When I was extremely sick the

doctor told me that my lab work AGAIN was all normal. That test, I

found out, was not normal and I'm now convinced that he didn't even look

at the lab report. Please, Please tell her to call Dr. Jerk and get a

copy of her medical file...the whole thing.

What state does she live in? Maybe if we find out the area she's in one

of us might be able to give her a doctors name. Best bet is if she's

very close to the big clinics.

Hope your feeling better today and your kids are doing well.

Take care,

Vicki-pm

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Hi ,

It's good to hear from you <caring hug.> I enjoy your posts, too :-) As

for the Relapsing Polychondritis.....who knows?! We did the CT scan and the

MRI....they didn't show any parts out of place. I think my brain is still

intact, too. LOL I still get sore, hot ears from time to time, but it

doesn't last long enough for me to run to the ENT and say " Is this what you

mean? " Anyway, I'm on the Minocin and there is an indication that it works

for the RP, too.....so I'll leave it at that for the time being. My guess

is that the Minocin is keeping both the DM and RP at bay....and that's just

fine with me.

As for your friend.....it sure sounds like she has one of these diseases.

Looks like we need to add her doctor to our Dr. Jerk list :-) The trouble

is that her symptoms fall in that huge overlapping category that is common

to all of the diseases...RA, PM, DM, Lupus, Scleraderma....etc I once

heard that painful hands are the calling card of RA (and it's other 100

related diseases.) My burning pain occurred in my muscles......although in

the early days of pain, I couldn't tell the difference between a joint and a

muscle. All I knew was my leg or my arm or my whatever hurt! Finally I

could decipher the pain, and the burning usually happened after I had

overexerted myself......like raking leaves for two hours. Another kind of

pain was when my shoulder would freeze up if I was in bed and had put my

arms over my head.....it really hurt to pull it back down. My hands didn't

have severe pain.....just the kind that is there day in and day out, like

the after-effects if I had slammed my hand down on the table. It was that

reverberating kind of pain that I felt when using my hands. So.....it does

tend to change, which makes it hard to describe in a one-minute visit to a

doctor.

All of my lab tests were " normal, " too, except finally my CPK was elevated.

I think I read that the tests for RA are only 80% positive....which sounds

pretty good until you realize that the 20% group that really does have RA

but doesn't test positive is still a large group. I think there are 4

million people here in the US with RA.....but not sure of exact data.

Tell her to hang in there and keep working at it. Tell her about the

www.rheumatic.org and www.roadback.org sites. She would probably find a lot

of similarities in reading the personal stories in The New Arthritis

Breakthrough by Scammell. I referred to it often and took a lot of comfort

in reading about other's experiences.

You're a good egg, !

hugs,

Connie

> Good Morning--

> I've skimmed through all the posts and want to welcome you new

> members wholeheartedly.

> I first want to thank you all again for your kind words on our

> kitty's passing- some people I'm sure don't really understand the

> grief, which is as real and intense as if you had lost a human loved

> one, and yet different as well.

> Good to hear from you Fern-- boy, I REALLY hope you can manage

> through the Prednisone reduction- what a tough time.

> - my daughter posted a tribute on the site you sent- a very

> healing thing!

> Vicki- are you able to eat with all these problems??? Ice cream and

> milkshakes only?:)

> Connie- love your posts- have you yet been actually DX'd with RP or

> maybe you said it was inconclusive?

> I have a question. I have a good friend who has not felt well for 6

> months-- recently her GP told her he wanted her to see a rheumy to

> test for polymyositis, or Rheumatiod arthritis- or whatever. She woke

> up a couple weeks ago with excrutiating pain in her shoulder,

> wrists/hands and ankles- has had some weakness and a lot of fatigue.

> She was needless to say upset! She needed pain relief and was able to

> get in to see a rheumy quickly- to make a long story short, this guy

> was a JERK ( ever hear that before?), barely looked her over, told

> her he didnt think she had arthritis and thought she was coming down

> with the flu. He wasnt even going to order ANY blood tests or put her

> on any meds! He finally gave her a cortisone shot in the butt which

> has helped her for only about a week and she now has Vioxx to take,

> which helps. But- with the cortisone wearing off, the burning pain in

> fingers/hands, ankles, hip and shoulder and neck are returning with a

> vengeance. She has another appt with a different rheumy in that same

> office later in Dec. I've heard some of you guys describe this

> burning pain- I've never had it in hands or ankles. I am pretty sure

> she certainly has a rheumatic thing going on- the jerk Dr. did do

> blood tests after she handed him a list of ones to do that I had

> given her- sed, CPK, CRP, Rh factor- all came back " normal " . I told

> her that does NOT mean she isnt sick!!! Sound familiar to you all?

> ANy thoughts on the burning sensation in those locations.... am

> trying to help her all I can. God bless one and all-

>

>

>

>

>

>

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Yes, you are a good egg, :-) Don't worry, you will be able to get

back into activities....only on your time-line, not theirs. I, too,

'retired' from a lot of involvement in church, school, etc. It's OK! Later

on, other things will replace these things.....you'll see.

> One strange thing that has occured is that I have lost my appetite <

This happened to me, too. That was one of the first things my doctor asked

about when I started getting sick in '96. Funny thing....I didn't even

recognize it. I told my doc that no, I hadn't " lost " my apetite....I was

just " neutral " about food, I could take it or leave it. Good thing she knew

better :-)

Also, you mentioned bleeding gums and night sweats, being cold. These

things have been mentioned as symptoms of our diseases. Here is a chart

from www.immed.org (go to the links at the bottom) that lists common

symptoms of Fibromyalgia/Chronic Fatigue. I think they are appropriate

markers for other rheumatic diseases, too. take care, Connie

Signs/Symptoms

Percentage of patients

chronic fatigue

93

depression

91

paraesthesia

86

joint pain, reduced mobility

84

vision problems, light sensitivity

84

cognitive problems

84

muscle spasms, burning muscles

81

dizziness, balance disturbance

79

stuttering, difficulty speaking

78

breathing problems

76

flatulence, bloating

76

headache

74

lack of bladder control; frequent urination

71

chemical sensitivities

71

stomach cramps or pain

71

sinus pain, nasal congestion

69

changed alimentation

67

loss of libido, impotence

66

sore throat

62

skin rashes

62

nausea, vomiting, regurgitation

62

tinitus, hearing loss

62

cardiac problems

59

coughing frequently, frequent thick saliva clearing

59

night sweats

57

diarrhea

57

chest pain or pressure

57

frequent infections

55

frequent sores, yeast infection

55

allergies

53

dry or itchy eyes

52

menstrual or genital pain

50

Table 2. Major signs and symptoms of CFS/FMS patients in the study

Prof. Garth L. Nicolson

The Institute for Molecular Medicine

15162 Triton Lane

Huntington Beach, CA 92649-1401

Tel:

Fax:

email: gnicimm@...

(unknown)

> Good Morning,

>

> We have our first coating of white snow here this morning and it is

> so pretty. Connie, I don't know if I'm a good egg or not- I could

> be " gooder " than I am! I sorta feel like I've gradually dropped out

> of life around here, taking a " leave of absence " from the church

> choir and the holiday activities- funny, I haven't heard one word

> from my " choirmates " or anyone in church for quite a while. I've done

> a fair amount in the church for 3 years, and not a thank you really

> or a phone call. OK- feeling sorry for myself!

> Here's a brief update: I've not been in a great deal of pain for the

> most part ever since I had that nasty cold a while back- oh, there

> are times and I have gotten used to the sciatica and stuff- hip aches

> now and then, etc., but have not taken any Vioxx. One day I took a

> Celebrex (200mg) but I didn't really notice any difference. One

> strange thing that has occured is that I have lost my appetite since

> Just before Thanksgiving. I can be very sick or very sad and still

> NOT lose my appetite, so this is very odd. I am eating, but not as

> much and never feel hungry and nothing at all appeals to me. I do

> feel a bit shaky and weak at times and tired. Another distressing

> thing is that my gum disease, which had been totally under control

> for a long time, has really been acting up. Bleeding gums, and sore

> gums and a sore tongue! I go to the dentist every 3 months and have

> been as religious as ever in my home dental care. Also experiencing

> night sweats all the time now (most likely hormonal, though I've not

> had any hot flashes- I use a progesterone cream), and I feel cold

> most of the time, regardless. Of course, when I clean or move around

> a lot-which I don't do much of lately, I warm up. OK- that's my NOT

> brief update.

> - I too want to know if you've gotten your test results and

> are you going back to work-full or part time?

> Teddi- how do you feel, and Anne Marie and everyone else?

> Deneen- I wish you well and pray that you will be able to shoot

> (successfully) those 3 pointers without doing yourself in! Will be

> anxious to hear how it went. Love

>

>

>

>

>

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Hi Everyone

.... We have some of the most beautiful weather here today. Not

suppose to rain for at least a week. I'm still trying to finish up my

barn.... What started out a few weeks ago as nailing up 6 boards is now

down to two (barely) and alot of very heavy breathing per day.

About your Church...that really is too bad. I'm so sorry they treated

you like that. I'm a firm believer that everything happens for a

reason.... maybe you need to rest more. Ya never know.

Correct me if I'm wrong but it sure sounds like most of you only take

your pain medication whenever needed. I take mine faithfully every

morning so as not to have the many ups and downs. Just wondering.

I wish you could give me some of your " Lost Appetite " syndrome.

Yep, night sweats are part of this lovely disease. When they first

started in me I thought I was going through the hot flashes again.

After a month, I couldn't stand it anymore so I talked to my doctor.

There I was talking to him and sweat was pouring down my forehead...not

pretty.

He told me that it is not uncommon for a person with an autoimmune

disease to have an inability to regulate the body temp. Oh great.... I

just get through the hot flashes and now this.

are you taking any Vit. C and E?

Ok, that does it for now. Hope everyone had a great day.

Take care,

Vicki

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... Yep, the MAA does have lists of doctors that belong to the MAA.

She just needs to email them and they will send them out to her.

On my way home yesterday I stopped off at two more stores to search for

a jewelry box with a lock on it. Does anyone remember the kids jewelry

boxes that had the little lock on the front.... now I can't even find a

kids jewelry box. What's this world coming to. LOL

I'm pooped again today. I didn't get a chance to call the doctor to see

when I can get back on my Enbrel.... it better be soon or I'm going to

disappear into this mattress.

Vicki-pm

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Vicki....you must put the kiss of death on toys

.....wasn't it just last year that the life size dolls

that fastened on the shoes went off the market

cause you were looking for them?????? this

year it's jewelry boxes.......lol

Teddi

mailto:teddifromok@...

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LOL... Oh Teddi, I had completely forgot about my venture in looking for

those dolls. Gosh, maybe I should open up a store with all the things I

can't get....

My software arrived for my grand babies today. I've already wrapped up

the rest of them yesterday. The best part is they send a package of

M & M's inside the box.... I know that must be for me ....lol

Vicki

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