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Re: Hi, Dawn

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I don't remember the puffalump dolls. It is great that your hubby doesn't mind. Mine has never made any remark about the weight either, we have had some problems but he has been wonderful lately.

My neck and double chins are growing too. My neck feels like I am wearing a turtle neck all the time. I try to avoid mirrors at all costs. I look pregnant. UGGH. But that is normal with the pred. I have found out, though, that you cannot fight this disease withoiut it. Trust me, I've been there, tried it. It makes it worse so keep taking it. Too bad we aren't all close we could start a 'puffalump' tribe. LOL

Zanna

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Lani,

Welcome to the group. My name is Zanna. I have pm. I am early 30's with a husband and 2 children. If you have a medical reason that you should not be on prednisone, then you shouldn't but it is the best medicine for myositis and then combined with something else. I have tried them all and gone without the pred. It doesn't work!!!! I am on pred again and cellcept (a new one for me) and it causes very few side effects and my cpks are dropping fast. You can read my story at Zanna's Myositis Page . Please reconsider the prednisone though!

Zanna

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Hi, Lelia. I guess I haven't heard of crewel embroidery, but the farm scene

sounds lovely. I did get a

bit of chocolate on my last project while I was in the hospital, but I get them

dry cleaned before

framing them anyway, so all is not lost. At first, I found it great because I

was so engrossed in my

work, I wouldn't take a break to even get a drink let alone eat. However, now

that I'm an old pro at it

(ha!), I figured out how multi-talented I am and can do all 3 things at once.

LOL.

How does the digest form work? I think I would like that better because I

wouldn't receive as many

emails, but I wouldn't know how to respond to each one individually.

I also wanted to ask you all a general question about our lovely " moon faces " .

I not only have the

round moon-shaped face with the chipmunk cheeks, as my Dr. calls them, but

underneath my chin and my

neck have gotten extremely big as well. Is this normal from the Prednisone as

well? My face is so fat

and puffy, that when I see people in town, about half of them don't even

recognize me until I speak and

even then it takes them a minute or 2. It's really quite embarrassing. Plus

the weight gain on my

body. UGH!! I should post a before and after picture to show you how much I've

changed. I wasn't a

thin person before, but now I'm disgraceful looking. I just thank the good Lord

that I have such a

wonderful husband and he is constantly re-assuring me and tells me it doesn't

bother him a bit. Most

husbands would be out the door long ago, trying to cope with the disease, let

alone having a wife who

looks like this. He's a saint. Our nickname for me (which I started) is

Puffalump. Do you all

remember those stuffed Puffalump dolls?? LOL.

Dawn

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HI EVERYONE , IM KINDA NEW TO THIS I'VE BEEN READING EVERYONES MESSAGES FOR A HILE NOW, AND IM JUST WONDERING HAS ANYONE HAD THE PROBLE WITH TRYING EVERYTHING AND NOTHING WORKS ON THEM , IVE TRIED PLAQUNEIL, METHROTREATE,IMMURAN,PREDISON(NOT LONG TIME FOR PRED.) ALL KINDS OF STEROID CREAMS AND MY BODY IS NOT RESPONDING TO ANYTHING. HAS ANYONE HAD THIS PROBLE IF SO WHAT DID U DO.

LANI

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Hi Lani

Welcome to the group. Have you been diagnosed yet or are they just

trying different

things? Since prednisone worked for me I

will have to leave to some of the rest of the

group to answer your question.

Teddi

mailto:teddifromok@...

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LOL......Wouldn't that be cute to see us all walking (or should I say

waddling) down the street?? I feel just like you do, as if I'm about 8

or 9 months pregnant. I'm just waiting for someone to ask me when I'm

due. I carried both my kids very high and that's what has also grown

increasingly big. I have a HUGE spare tire and I HATE it. I'm glad to

hear your hubby and you are doing much better.

Dawn

wischic68@... wrote:

> I don't remember the puffalump dolls. It is great that your hubby

> doesn't mind. Mine has never made any remark about the weight either,

> we have had some problems but he has been wonderful lately.

>

> My neck and double chins are growing too. My neck feels like I am

> wearing a turtle neck all the time. I try to avoid mirrors at all

> costs. I look pregnant. UGGH. But that is normal with the pred. I

> have found out, though, that you cannot fight this disease withoiut

> it. Trust me, I've been there, tried it. It makes it worse so keep

> taking it. Too bad we aren't all close we could start a 'puffalump'

> tribe. LOL

>

> Zanna

>

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Yeah, I hate my stomach too. I feel really 'thick'. I especially hate when I walk up to a building that is all glass doors or mirrored doors and you look like the Michelin Man!!! Several spare tires. After I had my son, someone asked me when I was due. I said, the baby is 1 month old. She said ,'oh you still have some weight to lose huh???' A complete stranger. Some nerve. Little did she know I weighed the same then as I did when i got pregnant. ha.

Zanna

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Dawn... I got the swelling or puffiness under my chin, too. But now, I

believe it is just plain old double chin fat! I've been on pred. for years,

and still have huge problems with wanting to eat too much. Especially at

night...the worst possible time. Plus, I can't exercise, which doesn't

help. I try not to dwell on the weight gain...I know I should be doing

something about it, and am just hoping that I'll wake up some morning and

make that decision to lose the weight. I know the extra pounds contributes

to the lessened physical endurance, and I want that endurance back. I'm

just waiting for the motivation to hit me. Annette

Re: Hi, Dawn

Hi, Lelia. I guess I haven't heard of crewel embroidery, but the farm scene

sounds lovely. I did get a

bit of chocolate on my last project while I was in the hospital, but I get

them dry cleaned before

framing them anyway, so all is not lost. At first, I found it great because

I was so engrossed in my

work, I wouldn't take a break to even get a drink let alone eat. However,

now that I'm an old pro at it

(ha!), I figured out how multi-talented I am and can do all 3 things at

once. LOL.

How does the digest form work? I think I would like that better because I

wouldn't receive as many

emails, but I wouldn't know how to respond to each one individually.

I also wanted to ask you all a general question about our lovely " moon

faces " . I not only have the

round moon-shaped face with the chipmunk cheeks, as my Dr. calls them, but

underneath my chin and my

neck have gotten extremely big as well. Is this normal from the Prednisone

as well? My face is so fat

and puffy, that when I see people in town, about half of them don't even

recognize me until I speak and

even then it takes them a minute or 2. It's really quite embarrassing.

Plus the weight gain on my

body. UGH!! I should post a before and after picture to show you how much

I've changed. I wasn't a

thin person before, but now I'm disgraceful looking. I just thank the good

Lord that I have such a

wonderful husband and he is constantly re-assuring me and tells me it

doesn't bother him a bit. Most

husbands would be out the door long ago, trying to cope with the disease,

let alone having a wife who

looks like this. He's a saint. Our nickname for me (which I started) is

Puffalump. Do you all

remember those stuffed Puffalump dolls?? LOL.

Dawn

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Annette

................I got the swelling or puffiness under my chin, too. But

now, I believe it is just plain old double chin fat! .........

Don't say that.....pred is my out, my fall guy,

my scrapegoat. Don't say f a t. I DON'T

want to hear it. Heck, I even blame the cats

hairballs on the pred. Next thing I know you

will tell that the Easter bunny doiesn't exist..lol

Teddi

mailto:teddifromok@...

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Oh, Teddi... I'm so sorry. I just checked my chin in the mirror, and you're

right!!! It's in my mind! I actually have a swan neck! And the Easter

Bunny WAS at my house! I have proof! There were eggs under my pillow!

Feel better? Annette

RE: Hi, Dawn

Annette

................I got the swelling or puffiness under my chin, too. But

now, I believe it is just plain old double chin fat! .........

Don't say that.....pred is my out, my fall guy,

my scrapegoat. Don't say f a t. I DON'T

want to hear it. Heck, I even blame the cats

hairballs on the pred. Next thing I know you

will tell that the Easter bunny doiesn't exist..lol

Teddi

mailto:teddifromok@...

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