Re: (unknown)

[Guest guest]

Hi ,

The info you are looking for might have been from www.immed.org at the

bottom, click on Fibromyalgia/Chronic Fatigue (I think that's what it's

called) You should find a list of symptoms....

take care and hugs,

Connie

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

> ...........Question- Vicki, I thougth I jsut recently read a site you

posted

> about autoimmune symptoms? or was it you, Connie, or Fern? I know Ev

> sent one and I read that, but that isn't the one I'm looking for...

> just tried to find it here but can't. ..........

[Guest guest]

Vicki,

The Disney store carried little girls jewelery boxes.

The little boxes, with a key, that when you open it up

the little figurine dances. There is a turn key on

the back and it plays music. Both my girls have one.

They are the different disney princesses. One has

Snow White and the other is Minnie Mouse. You should

be able to find it on Disney.com

Hope this helps

Cari

--- anzavic@... wrote:

>

>

> ... 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

>

>

__________________________________________________

[Guest guest]

Oh my gosh Cari....I didn't check there. I'm on my way over... Thanks

so much for the info.

Vicki

[Guest guest]

,

I don't think you are supposed to go cold turkey on

the anti-depressants. I think you need to be weaned

off of them. Fern could answer this better then I. I

would hate to see you have trouble with the extra

energy, mental and physical, that we need to get

thought the holidays.

Hugs,

Cari

--- julie steinmuller wrote:

> Hi All-

> congrats Deneen! Just keep passing that ball....

> rest rest rest.

> Yeah- it's the lovely pred.

> Vicki- jsut read the depression posts- very

> interesting indeed. Now

> I'm staritng to wonder if the one I take, Celexa, is

> not suppressing

> those darn cytokines enough, or having the opposite

> effect. Gee- I

> didn't start to have my major problems until after I

> started the

> antidepressant last August- but was not too bad off

> until around last

> Christmas- but really got worse after Feb-Mar. I run

> out of my

> antidepressant tomorrow and have been thinking of

> not taking anything-

> my husband says I'd probably be a mess, but I dont

> know- or maybe

> asking the doc if I can try a different one- Zoloft,

> Paxil? I jsut

> dont know. My hubby and I tried to do some Christmas

> shopping this

> evening after we attened a concert with the kids and

> brought them

> home. Of course, our mall was just closing when we

> got there. So...

> picked up a couple items at a Linen's and Things

> store and then went

> to the only place left open- you guessed it- Wally

> World! Got kids a

> couple of CD's and a new computer mouse and a few

> groceries. There

> werent many people there but after a short while I

> just wanted to

> leave and go home- my legs didnt really hurt but

> felt very flabby and

> kind of like I have fluid buildup- which I do right

> now, but I didnt

> earlier and I dont know why- feel so very out of

> shape- worse than

> in years. I really need to get exercising again.

> So much for a short check- in note. Cari,

> could just be kind

> of allergic and extra sensitive to things- I know I

> am and for me it

> has nothing to do with Prednisone, but it DOES have

> something to do

> withthe immune system.

> Mike, Sue, Anne-Marie, , Teddi,

> Ralph,Fern,Elaine, Ev, Connie

> and everyone else- hope all had a decent weekend and

> find joy in this

> season. Love

>

>

__________________________________________________

[Guest guest]

MIKE:

Point taken. Thanks!

I need to remember that game time.

I ran scrimmage with the ladies yesterday for awhile and actually did more

rebounding than anyone. Paying the price today. Look like I was in a car

wreck!

That plaquenil chaser bothers me. How much do you take MIKE? I am doing 400

mg a day. But also doing 30 mg of Pred. I think that is where the bruising

comes from. (AM I RIGHT VICKI??)

The Vioxx has made all the difference in the world. There is no comparison

with that crap Relafan!

Also, those shots I am taking occassionally seem to be helping too. I just

don't know how often I should be getting them. Any suggestions?

No snow here in sunny CA. But sure are getting some nippy little breezes.

Starting to affect the old bones of mine !

I saw some photos of Chicago ( my former home and birthplace) on the news and

actually missed it for a brief moment. then remembered what that kind of

weather does to me and recovered from the loss of reality!

I don't know how any one else does it in the cold!

Hope all is well and all are having a pain free day!

Deneen

[Guest guest]

Good Morning Everyone...

It's another beautiful day here.... Sun is shinning and it's sooooooo

nice.

.... I also thought the depression article was very good. Do you

take your antidepressants morning and night?

I would call the doctor and let him know that the Celexa isn't doing the

trick now. This is common.... after taking them for awhile it then

fails to work all the way.

Are you sleeping well?

I know people that take Zoloft and Paxil but when I was on them both

made me like a zombie. I guess I'm just sensitive to these drugs.

I'm still trying to recoup from last Thursday...my legs are very sore

from walking all over. I wouldn't be able to fight the mall for

shopping... I do love to go into Wally Mart though. I try to get in

there around dinner time.....

You mentioned fluid buildup.... funny you mentioned that.... I've

weighed myself before I leave home and again when I get back home...the

reason behind this is that I feel like I'm a water log... I gain

anywhere from 10 to 13 lbs just out walking. My stomach can be somewhat

flat and when I get home I look like I'm going to have triplets.

I would love to be able to exercise and rebuild my muscles... My last

doctor appt. the doctor did say that the soreness in my upper arms, legs

and parts of my back are damaged muscles and will always be like that.

OH BOY.... JUST WHAT I WANTED...Lol

Cari.. I'm so glad to hear that is doing much better. Is your gas

fireplace run by natural gas or propane gas? I have propane heating and

when I first use it in winter I get the burning sensation in my eyes. I

have a guy come in to clean it and re-set the flame.

To everyone else.... Hope you all had a good weekend and that your

shopping is almost over so you'll have time to rest. Take care,

Vicki-pm

[Guest guest]

Mike,

's facial rash was like a camel eons. He

literally changed colors all day long. Purple to red

to pasty white. It did lessen and pass with time. It

did take about 6 months. His hands did the same thing

but to a lesser extent and it passed quicker. He

still gets very red faced when warm or when getting a

lot of exercise. Hang in there.

It has been in the 40's and 50's here in Georgia.

Last Sunday we even had snow! It didn't stick, much

to the disappointment of my children. Now we just

have rain, rain, rain.

Take Care,

Cari and - JDMS

Cari and - JDMS

--- mjboyce25@... wrote:

> Hi .

>

> It's good to hear from you again. And you are

> already ahead of me in

> the Christmas shopping department! Not fair, lady.

>

> Up here it is finally starting to look like the

> Great White North.

> Our first major storm of the season is just

> starting. We are

> expecting about a foot of snow today and tonight --

> pretty much like

> what Chicago and Detroit are supposed to get. The

> worst thing about

> this is that my evil rheumatologist thinks it would

> be great therapy

> for me to shovel snow. Of course, my wife and

> teenage children agree

> with him. Well, we'll see.

>

> I've got a question for the DMer's on the board. I

> am still tapering,

> and am currently at 12.5 mg/day of prednisone, with

> a plaquenil

> chaser. While I'm still feeling fine, and my gym

> work is improving

> (heavier weights and more run time in the run-walk)

> I have noticed

> that the DM rash on my knuckles and finger cuticles

> is a bit more

> pronounced than it was. Before, the skin around my

> nails would change

> colour from purple-violet to flesh and back to

> purple-violet as the

> day wore on, but now they are sticking pretty much

> to violet. As

> well, the tips of my fingers are a little sore. This

> is nowhere near

> as bad as it was before I was diagnosed, but I'm

> wondering if, as the

> steroid dosage was lowered, anyone else experienced

> these minor

> bothers, and if so, what it meant for the longer

> term.

>

> Vicki, I hope all the boards for the barn are now

> up. If it's winter

> in Toronto, it must be getting cold even down where

> you are.

>

> Take care, everyone. And Deneen, remember that two

> assists beat a

> trey on the scoreboard.

>

> Mike B

>

>

__________________________________________________

[Guest guest]

<snip>

It's another beautiful day here.... Sun is shinning and it's sooooooo

nice.

<snip>

Sure Vicki.....rub it in....it is 16 degrees here with a wind chill

factor of -21

When they wrote the song Oklahoma they knew what they were talking

about.... " where

the wind come rushing down the plains "

Teddi

mailto:teddifromok@...

[Guest guest]

....LOL... I think this is our nature. We don't want to take any

more drugs than necessary. It's proven that women usually wait to long

before getting some relief. Guess we feel if we can stand child birth

we can stand anything. I'm waiting for the day when men give birth. I

need more humor in my life....

sleep is good for you..... it's repair time! BUT... I think

you'll have to sleep a lot longer if you think we'll get a president any

time soon...LOL

Four years from now when we vote again, I think Fla. should go first and

one month ahead of everyone else. Once there done and it's counted then

everyone else can vote....

OK, now my mouth is watering. Would you like to part with the recipe

for those cookies??????? And Mike... same order for me thank you....lol

Oh .... when I read your dilemma on your fingers I couldn't stop

laughing. Not that it's funny to you, cause I'm sure it's not. But, I

have the same thing. On my right hand, middle finger, the end joint has

caused the tip of my finger to point down. On my left hand, middle

finger, the end joint has caused my tip to turn to the left. And you

can notice it. I also have long slender fingers. I asked my Rheumy

about it and since I have Osteoarthritis it's due to that. I've never

had any swelling nor pain in those joints. Have you ever been diagnosed

with Osteoarthritis? One good telltale sign is by holding your fingers

out straight...take your other hand and lightly rub your fingers over

the end finger joint on the other hand. If you feel the joint as a

hard knot rather than smooth, chances are you have Osteo.

On my right hand, middle finger, the middle joint is now bending in...

makes for such a lovely looking hand... I guess this means my dream of

becoming a hand model is out.... :~}

Have you ever use the spray bandages? I just wonder if that would work

on a persons hands... I've never used it so I'm unsure how it would

work. Of course, as quickly has my face is falling I should first try

it on my face....just a thought!!!!! {;~0

Vicki-pm

[Guest guest]

Speaking of Gore - did anyone notice the shade of lipstick he was wearing for his speech last night ??? Looked a little too much on the rosy side for me !!

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

>^..^<

[Guest guest]

The morning after....

1. How many Justices are there on the Florida Supreme Court?

Answer: No one know. They are not finishing counting yet!

2. Did you hear that Al Gore created hundreds of new jobs in Florida?

Answer: Yes, he made them count ballots.

3. Why are all the unemployed in Palm Beach County, Florida sitting on the

dock?

Answer: An election official said he needed help to count votes, and

they all thought he said he needed help to count boats?

4. How can Floridians hold five markers in hand, smoking, and drinking and

keep up with 20 cards at the same time when Bingo numbers are being called,

but can't count a ballot?

Answer: Your answer is good as any.

5. Did you hear that the Sunshine State has a new nick name?

Answer: Floriduh!

Enjoy

Jim-IBM

[Guest guest]

I can't remember if Gore was wearing a RED tie... If so, maybe

he was trying to match the same hue on his lips....LOL Which is out!

Ewwwwwwwwwwwwww !!!! I dont remember either as I couldnt get past the lips !!! I do remember however that Bush was sporting a red tie but I dont think he is into the whole makeup thing !!!

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

>^..^<

[Guest guest]

Good Morning Everyone....

I can't remember if Gore was wearing a RED tie... If so, maybe

he was trying to match the same hue on his lips....LOL Which is out!

AT least it's over with....we'll see him again in 4 yrs.

Vicki

[Guest guest]

Jim.....Thank you for sending that... it was sooooo funny that it made

my day!

Vicki

[Guest guest]

,

Could you describe your hip pain to me. That is what

is complaining of. Just his right hip. He is

having an MRI this Wed. He is going to have to put

him to sleep.

Thanks,

Cari

-- julie steinmuller wrote:

> Hi Vicki- I know how toxic choc. can be- she is fine

> (tho she

> shouldn't be!). Not even any diarrhea or upset.

> hehe- it WASN'T the

> finest chocolate.....

> At that time of the rashes, I went to a

> dermatologist right away- I

> was in so much agony I would cry. The " spots " would

> tingle something

> fierce. The derm. simply called it all atopic

> dermatitis/allergic

> dermatitus/ conjunctivitis--- cause " unknown " . It

> has never totally

> gone away thus I've had to take the atarax daily

> since then. I've

> tried some of the newer antihistamines on the market

> but none of them

> keep the itching/irritation under control as well as

> the atarax.I've

> even been wondering about Psoratic Arthritis,

> Reiter's Syndrome, a

> combo of things and looking back, certainly wonder

> whether it is ALL

> connected- with the poly or even dermatomyositis???

> Had no nap

> yesterday and was feeling wiped out and

> dysfunctional by yesterday

> afternoon. I had figured I could get some of the

> projects I had

> started the day before finished..... not. Oh well.

> Hips really

> bothering me, especially at night when I

> sleep-again. I will try

> taking the Celebrex daily, if I can stomach it, and

> see if it helps.

> The one I took the other day I think helped some but

> wore off. Am

> supposed to take only one 200mg capsule/day. How

> much do you take?

> Perhaps Vioxx does work better for me.... Love

>

>

>

__________________________________________________

[Guest guest]

.... If the problem were more in a blister form then I might know

what it could be. But, you say it's a rash... I know the canker sores

and the fever blisters are the herpes virus and can be controlled. It

might be a form of that. It doesn't sound like your dermo knew to much

about Myositis and all it's hazards. When I got my blisters on my

body...it turned out it was the virus that causes chicken pox, which

lays dormant in your spinal column forever. With this autoimmune

disease anything you have dormant in your body will pop out from time to

time....more on than off for people like us. Have you discussed this

with your Rheumy? If not, maybe you should. He just might know of

something to help you since it's all related. Correct me if I'm wrong

but I think a Dermo treats only the skin itself while your Rheumy will

treat whatever it is causing the problem. At least it's that way at the

clinic I go to. When I first got this disease.... I was told that

everything that I get would be first handled by them, my Rheumy's, and

if it was out of there element they would refer me to another

specialist. I have only seen two other specialists for my problems...

my eyes, and then a dermo because my mole fell off in the

shower....anything else, they have taken care of because it's all

related.

Celebrex... I started taking Celebrex because I have a very bad

stomach...having to take the prilosec twice a day and still getting

indigestion. It was the only drug I could use that would take the pain

away and not hurt my stomach. I still have a small amount of pain and

aches.....especially if I do any walking. When my legs really hurt I

also take the Clonazepam, 1/2 tablet and that really helps to take the

ache out of the muscles. It also helps me to sleep better. My

prescription says to take 1 to 2 tablets as needed..... but my lung

specialist says to only use the 1/2 table to start with. So far that

works fine. I started these pills for the restless leg syndrome. I get

to the point that my muscles start to jerk and my jaw will

quiver....drives me nuts. This is a common aliment with this disease.

My arms will feel like I've got to move or shake them..... it feels

like tiny electrical shocks going through them.

Hope you have a better day and that your mouth will start to heal very

soon.

Take care,

Vicki

[Guest guest]

:

The rash you are talking about is in psioriasis family. I have it. Got it

when I was about 12. Painful Stuff! The itching can be uncontrollable like

poison ivy, feels like your skin is on fire. It is related to the myo

somehow. But I am not clear on it. My rhuemy and I just discussed this a few

weeks ago as we were back tracking through my medical history. There is a

cream that works extremely well, and I have tried them all! I will get the

name for you, cuz at the moment it escapes me.

Hope you are well.

Glad the dog didn't poo* all over!

Deneen

[Guest guest]

Vickie - Try this link for more information about IBM <A

HREF= " http://www.ninds.nih.gov/health_and_medical/disorders/inclusion_doc.htm "

>

NINDS Inclusion Body Myositis Information Page</A>

Jim

[Guest guest]

Hi Everyone....

Just wanted to touch basis with everyone. While most of you are socked

in with bad weather....us here in sunny Calif, the land of high taxes

and electricity, are not only high and dry but experiencing some very

beautiful weather. When it's like this I'm just as happy as a lark to

pay the state... NOT! Looks like most of you have freezing temps...

Deneen....how are you doing? Anymore problems?

Sue... how are you feeling now?

Fern.....worry about you kiddo...

..... I'm also worried about you. Are you alright?

Was trying to do some research last night for Ev. Has anyone run across

new research/medicines for IBM? I couldn't find anything but maybe I

just missed it.

To all the rest that haven't posted in a while.... pop your head in and

let us know how your doing.

Take care,

Vicki

[Guest guest]

Cari and ,

Thank you for your reply!! Goes to show you, you are never too old, huh?

I,m waiting now for Steve to break in on the instant messages-and tell me

whats hes been up to today. He has part time job, working for his

son-in-law.Thanks again.

Love you.

Ev.

[Guest guest]

I survived my first day back with no setbacks !! It was really nice to see everyone again and feel like Im more than someone's Mom for 6 hours. Getting off at 2:00 rocks !!! I got a lot accomplished at home and was able to have dinner at a respectable hour. My energy level finally gave out about 8:00 tonight and Im off to bed now so Ill be able to perform my encore tomorrow !!!

[Guest guest]

,

Hope your first day back at work is great! Don't overdue.

Ev, I also think it is wonderful that you have a suiter! Makes life much

more exciting!

Everyone take care,

Cari and

>

>Reply-To: OurMyositisegroups

>To: OurMyositisegroups

>Subject: (unknown)

>Date: Thu, 04 Jan 2001 02:53:06 -0000

>

>Thank Goodness - I mean about the no ulcer, NOT the

>infections! I hope you recover quickly.

>Ev, I think it's the greatest thing- forgot which way to spell suiter!

>I always love it when I see a story of 80-90 year olds falling in

>love or getting married, or simply finding wonderful companionship.

>How is your tooth infection now, Vicki?

>Thinking of ALL the rest of the group- love

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

,

Godd luck--the world is waiting--you go, girl!!!

Love,

Ann-Marie

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Good for you ... getting off a 2 pm is wonderful.... I think

everyone should work until 2 pm...and get paid full wages. I sure don't

want very much do I? Oh well, I don't have to worry about that now....

I'm my own boss.... lol

Hope you have an even better day tomorrow.

Vicki

[Guest guest]

Hey Cari

hehehehe....guess what?...you are back to

normal size...who knows why?

Teddi

mailto:teddifromok@...