Re: (unknown)

[Guest guest]

Dear Fern,

You mentioned that you had trouble starting to taper on the Prednisone.

I just went down from 20mg. to 15 mg. and had five days where I was sore,

felt like I'd been hit by a bus, and was MEAN, MEAN, MEAN. I call it my

" Prednisone Detox " and it usually lasts about 5 days. I feel like I should

wear a laminated sign that says " OUT OF ORDER FOR FIVE DAYS. "

Take care--enjoy New Hampshire!

Love,

Ann-Marie--MCTD/PM

P.S. Teddi--how IS your leg?!?

________________________________________________________________________

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[Guest guest]

Hey Vicki, Yes I am still working almost 7 days a week. I am very busy.

and dizzy. HA HA I have been on high doses of orednisone for 7 years now

YUK! I am currently taking 12 and half mil a day. I go to sleep okay

but I wake up constantly OH WELL> Really don't want to take sleeping

pills. Skin has been very red and SO ITCHY I say I am the itchy bitch.

I cannot stop itching. It not only feels terrible it looks awful to see

me itching constantly. Love to you Helen

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[Guest guest]

Helen

How good to hear from you again....glad you

are doing so well......as for the not sleeping

...yeah, that goes with the territory....lol....my

dr has me on antidepressants....2 trazadone

at night and I can't believe the difference it

makes.......ask you dr about this.....and DON'T

go so long without letting us hear from you

Hugs

Teddi

[Guest guest]

Ann Marie,

I wasn't as concerned about feeling like being run over by a truck when

starting to taper the prednisone, because I am used to that due to the

fibromyalgia. It was the difficulty breathing that scared me again so bad.

Gentle hugs,

Fern

[Guest guest]

,

I am sorry to hear that you are not going to get to vacation the way you

were planning. I know how disappointing that can be. I was worried during

the planning of our trip that something might go wrong, because with us

things never seem to go right. I am still amazed that we are here.

I take Ambien and it is a wonderful med. It lulls you to sleep so gently

and then when you wake up in the morning you cannot even tell you took it.

If you have any questions about this med, I can look them up in my drug

book.

Gentle hugs,

Fern

[Guest guest]

Hi ,

When I first got sick in August of '96 I had some symptoms that might be

similar to some of yours. I didn't just wake up one morning with muscle

weakness, like some people unfortunately do. No, mine started with a

definite pins and needles in my hands and half way up my arms. I think this

lasted for almost two weeks. Then, I started having zinger pains in my

hands and up through my arms. This, too, lasted for about two weeks. This

progressed to that " asleep " feeling in my feet and ankles....and it lasted

for a few weeks with every step I took. This was way before the Minocin

antibiotic was started....cause no one really knew what was going on at the

early stage. Finally, things seemed to get on a more regular course of a

connective tissue disease.....RA, DM, or something in that family. By then

I noticed that my muscles were on the wimpy side. In the beginning, I

couldn't really tell if my pain was in a muscle or a joint...it just hurt.

So.......in case it helps, I thought that I'd add my 2 cents :-) These

diseases can be so vague and hard to distinguish....even the fatigue and

mental aspects are hard to describe from one day to the next. My bloodwork

was always in the normal range until the CPK finally showed some elevation.

I'm glad my doctor realized that the bloodwork isn't always elevated in

these diseases.

take care and know that I'm thinking of you,

Connie

(unknown)

> Hi Everyone,

> I'm sorry too,Ev, that you're not feeling well. Hang in there and try

> to stay in touch.

> How are you feeling now Fern? I hope there is some improvement so

> youcan enjoy the rest of your vacation.

> Anne-Marie, I've tried some of the things you suggested re:

> sciatica.It just doesn't go away. Now, though, instead of the intense

> pain I had at first, I feel much tingling in my foot and calf- I'll

> still have the sciatic pain, but the intensity is lower.My calf

> muscles and foot will ache a lot. It's been months now, and is there

> any danger i'm getting any permanent nerve damage?

> My kids have been gone since Thursday and will return perhaps on

> Firday. I am relishing the peace! My husband and I did some fun and

> special things over the weekend. On Sunday, we took a hike in a

> lovely park next to the Hudson River. The path is called Poet's Walk

> and it was part of one of the old Hudson River estates. There is not

> much climbing or anything and the lenght is about what I will at

> times do on my dog walking days. But, the backs of my legs are so

> sore I was limping last night. Kinda hurt all over too. That

> shouldn't be! Feel tired and achy this morning. I don't feel

> especially weak muscle-wise, but don't feel particularly strong and

> energetic either! I am experimenting again and haven't taken a Vioxx

> since Sunday, to see how I feel, though I BADLY want to take it!!

> - how have you been doing lately?

> Vicki- you still doing the Enbrel?

> Teddi- with your sense of humor you'll live to be a 100!

> I want a hammock too- you know, you could rig up a system of pulleys

> and weights to get in and out of comfy hammocks and chairs- kind of

> like puppeteering! I have a mental picture...... Love,

>

>

> ------------------------------------------------------------------------

> Free Worldwide Calling with Firetalk!

> Click Here:

> http://click./1/5481/11/_/561170/_/964535506/

> ------------------------------------------------------------------------

>

>

[Guest guest]

Hi Connie! I appreciated your 2 cents anytime! It all adds up.

Yes, there are some similarities here. I wish I could remember more

about how I felt 25 tears ago when first afflicted, before DX. I do

remember the tiredness most of all at first, for weeks and weeks andI

think muscle pain when " doing " or overdoing. I also think I had some

edema, particularly in the legs, then started walking funny......--

> > I too, cna't tell for sure what's in the muscle or what's in the

joint. I will go back to doctor before Oct if I really feel it could

benefit and maybe get referred to a rhuemy and/or getting bloodwork a

bit more often, though I'm sure the vioxx can affect that. Thinking

of you too! Hugs,

> >

[Guest guest]

Ill give it a shot. Anything at this point for some sleep. I sure my

neighbors are tie\red of seeing me outside at 2:00 am pulling weeds !!!!

Sure beats the temperature during the day though.

[Guest guest]

Hi ... I hate to hear your not feeling well. Just when you think

it's getting better something happens. I'm sure with the kids gone that

it has made you relax a bit more. I don't know how you women do it ....

having this disease and caring for a family....my hats off to you all.

Yes, I'm still on the Enbrel. I don't know for how much longer though.

I see my doctor on Thursday so we'll see. I've been having a time of it

again. I went to the movies yesterday... it was so hard for me to sit

in a chair for 1 1/2 hrs. After the movie was over I could hardly get

out of the chair. I've had my calf muscles, tops of my feet really

hurt. My feet still burn and throb once I put them up. So I have a lot

of questions for my doctor.

I hope you start to feel better soon but I also would contact your

doctor and let him know what is going on. He might be able to help you

out.

Take care

Vicki-PM

[Guest guest]

My daughter has had 2 orthoscopy (sp)

surgeries on her knee but still had a lot

of pain which they said came from the

knee cap so they went in and removed

the knee cap.......she just got her

cast off the day before they went home

Teddi

[Guest guest]

Yep, two in college.....owch! Sounds to me, , that you did it just

right......maybe you won't have two in college at the same time :-) We

still have a fifteen year old daughter at home for three more years. I

don't know what happens then? Maybe three in college at the same time?!

ok......more confessions.....I hate to cook, too :-) What a pain! I just

bought a cookbook called " The Once a Week Cooking Plan " LOL......that's the

truth!! (I haven't tried it yet, though :-)

take care and hugs,

Connie

[Guest guest]

Hi everyone.... I hope your weekend is starting off great. You guys are

talking about kids going off to college...just wait until you become

grandmothers...boy..time sure does fly. When your a kid you can hardly

wait to become 18 and it creeps along. Once you start to have

kids....the years ZOOM by.

Connie... you'll have to let us know about the once a week cooking

thing. I think I saw something like that on TV. You cook in big

batches and freeze them. When my daughter was home...many years ago....

I would make pasta and freeze that for her and her friends to NUK when

they got home from school. I'm with you guys... I also hate to cook....

actually, it's the clean up that drives me nuts. I'm very messy when I

start something.

They announced on the news this morning that the fire that is still

going 30 miles from me was set. Guess this is the beginning of a few

more. I think they should take these people and hang them from the

tallest tree. This winter will be really bad for the new houses that

the fire came close to. They will have nothing but mud slides. For the

fire that is near me, they said the food to feed all the firemen is

costing $230,000. dollars. Of course in my book these men and women

deserve it all. They were cooking BBQ ribs yesterday for them...

12 hr shifts...my gosh... I couldn't do 5 minutes on a fire line...

Take care everyone...

Vicki-pm

[Guest guest]

Vicki,

We have had guests all weekend and trying to finish up

back to school shopping. I didn't read until just

this morning about the fire and then it didn't connect

that it could be close to you. That is so scary. I

agree with you about the punishment for the people who

set the fire. How could somebody do that? Keep us in

touch with how you are doing.

Take Care

love, Cari

--- anzavic@... wrote:

>

> Hi everyone.... I hope your weekend is starting off

> great. You guys are

> talking about kids going off to college...just wait

> until you become

> grandmothers...boy..time sure does fly. When your a

> kid you can hardly

> wait to become 18 and it creeps along. Once you

> start to have

> kids....the years ZOOM by.

>

> Connie... you'll have to let us know about the once

> a week cooking

> thing. I think I saw something like that on TV.

> You cook in big

> batches and freeze them. When my daughter was

> home...many years ago....

> I would make pasta and freeze that for her and her

> friends to NUK when

> they got home from school. I'm with you guys... I

> also hate to cook....

> actually, it's the clean up that drives me nuts.

> I'm very messy when I

> start something.

>

> They announced on the news this morning that the

> fire that is still

> going 30 miles from me was set. Guess this is the

> beginning of a few

> more. I think they should take these people and hang

> them from the

> tallest tree. This winter will be really bad for

> the new houses that

> the fire came close to. They will have nothing but

> mud slides. For the

> fire that is near me, they said the food to feed all

> the firemen is

> costing $230,000. dollars. Of course in my book

> these men and women

> deserve it all. They were cooking BBQ ribs

> yesterday for them...

> 12 hr shifts...my gosh... I couldn't do 5 minutes on

> a fire line...

>

> Take care everyone...

> Vicki-pm

>

>

__________________________________________________

[Guest guest]

I see I'm going to be playing catch up with all of you.....lol

... I remember when my daughter use to wear an eye patch...she

bumped into walls, fell off curbs, slammed her fingers in the door.... I

took it off cause I thought it was too dangerous for her to wear....LOL

Nicotine Gals...lol... you know you should make a tee-shirt.... " PLEASE

HELP ME - I'M A NICOTINE GIRL "

Did you get a chance to read the site on smoking and maybe try one of

the things to keep your mouth occupied? LOL

In regards to my testing.... this is what I love about this place. They

really search for the answers.

After talking to the doctor yesterday regarding the latest test....he

said that they expected that outcome. I'm going to stay on the Enbrel

until my pulmonary function test is done. If it hasn't improved then

he'll take me off the Enbrel...but, if there is slight improvement he'll

leave me on it for a while longer. It's all up to my lung specialist

now. My Rheumy feels that my weakness is due to my lungs. At times,

without realizing it, I'm working twice as hard to breath than a normal

person which wears you out. This morning my rheumy and my lung doctor

along with several others had there meeting to figure out what to do

next.

As for the muscles...well he did tell me that I have permanent muscle

damage and my legs will always feel weak and when I loose my energy it

will be the pits. He said right now he's more concerned with the shape

of my lungs and he'll know more after all my lung testing. The nice

thing was ....he's going to take me off most of the meds.... last visit

he upped my Prednisone to 7.5 to see if it would help...it didn't so now

it's dropping back down to 5 then every 5 days drop 1mg until I get to

2mg.... will drop lower if I get an inhaler that has cortisone in it.

I had to have him fill out an insurance form ....so he did it right in

front of me and he was sooooo funny. He said " Don't these people

understand the meaning of PERMANENT " ?... They ask the same question

four different ways... I think it was just the fact that I heard him say

" Will not get any better " that kind of got to me.... oh well, just have

to learn to live with it and not worry about what I can do to make it

better.

As for the testing .... remember that I have the Anti-Jo-1 which is

a hard one to fight. It reproduces itself at a fast rate and fights

everything you use to help you. I read somewhere that It can make you

just as sick as the myositis can.

Your Sed Rate and your CPK tests show if there is any inflammation in

your muscles so these are still good tests. But as time goes on and you

still feel sore and weak, these tests might show normal as mine do right

now.... then other tests need to be run to see if there is other

inflammation. Now I'm labeled with chronic inflammation. First, I

think everyone should know what antibody they have. Some doctors don't

agree but it is a necessary marker for them so why not just let you

know. This is especially true if your having breathing problems. It

could be just the myositis but you won't know what to expect unless you

find your antibody.

Two years ago I started to write to an individual who was having trouble

with shortness of breath. Her doctor told her it would go away, that

she was under a lot of stress. He wasn't sure if she had DM or

PM...which I found very strange. I told her to call s Hopkins to

make an appt. It took her 6 months to get in because her doctor

wouldn't refer her to the clinic. Once there....they took tons of

tests.... a month later a muscle biopsy and a month after that the lung

biopsy.... she has DM with MI-2 antibody with Sarcoicosis in her lungs.

She said once she was told of the antibody and looked it up...she knew

what to expect.

Ok, I've said enough....talk to you all later.

Lots of hugs

Vicki-PM

[Guest guest]

Ralph Becker produced the following text on 8/16/00 at

5:37 AM:

> We're on vacation this week. We're not going away anywhere, but we do

> have plans for a couple of day trips. Today, we're going to an

> amusement park (I *love* the big coasters), and we also have tickets to

> the Van Gogh exhibit in Boston.

Day trips are a lot of fun. Let me know how you enjoy Van Gogh at the MFA.

We dared to go to the MFA with our 3 and 5 year-old (just before the V.G.

exhibit arrived). We had a good time, even though they are little. It just

meant a shorter visit.

I hope you have a blast!

-

[Guest guest]

Fern:

Great story! I hadn't caught up on all the replies before sending out my

last email - it's funny that your story has some parallels with the joke I

told. Of course, you handled it perfectly, it appears!

You're absolutely right about having to be prepared. I think if Mattie were

a few years older, I would sit her down and ask her if she has any fears or

questions so that I can answer them. But at this age it's all over her

head.

It's amazing how a few years can change the situation.

Cheers,

-

[Guest guest]

Hello everyone... Well, my prayers were answered in regards to rain.

It's rained twice in two days.... Day before yesterday being the worst

I've seen for our summer rain. Lighting hit my tv antenna and took out

the tv...(didn't get it disconnected in time) I was trying to run around

the house disconnecting everything. But, to make a long story very

short.... I ended up with a new TV, VCR, Telephone, Webtv and the

wonderful surge protector that was suppose to protect me from all of

this.....now how's that for shopping.... Just got the Webtv hooked up

and now I'm back on course. I haven't look at any of my emails yet....

but I see you guys have been busy while I was gone... I'm going to go

read what was going on so I'll be back later.

Hope everyone is doing great...

Vicki-PM

[Guest guest]

, what area do you live in where you don't get boysenberrys?

Skinny...what's that????? I haven't seen my bones since I was put on the

prednisone.... I'm very small boned......Yesterday I went to the doctor

and I was 11 lbs heavier on there scale by the time I got there...no

wonder I'm tired .... dragging all this around wherever I go.... checked

my scale when I got home and it was the same as the doctors... I seem to

swell up like a balloon when I'm out.

Vicki-PM

[Guest guest]

Hi ....regarding the horses and dogs. I would feel so lost if I

didn't have animals around. At times it's very hard to get down to the

barns to feed.....huff and a puff all the way down and back up.... I

have to sit down a lot .... what use to take me about 10 minutes to

feed... at times, takes me 40 minutes. I have decided that when these

animals pass away.... that would be it. I have one horse in her early

20's... two in there mid 20's and two in there late 20's.... it's sad to

see the changes that take place in them, but they have lead a good

life... unlike me..LOL

I promised my daughter that I would start to travel (if possible)... I'm

currently setting my sights to go to Australia next summer but as we all

know... I'm not getting my hopes up too soon.

... we have Mulberry trees out here and they are sooooo good.

People make jam and cobblers out of them. I have one tree and have

ordered two more for planting this winter.... everything I put in the

ground I like to share with the wild critters out here.

I went to see my lung doctor yesterday and she was excited when she saw

the xrays.... I've gained 1/4 " more lung capacity... and there are no

new scars... so nothing has changed since April. We did talk about when

the disease becomes very advanced and her thought was the lung

transplant list. I told her that I thought I wouldn't qualify for the

transplant due to having the myositis.... she said that my outlook on

life and the diseases I have was so great that I could make it through

anything and therefore would be a good candidate for lung transplant.

Since I'm going down on the Prednisone, she put me on a new inhaler

called Pulmicort Turbuhaler (Budesonide inhalation powder) .... I can't

tell if anything is coming out or not but I'm sure it is.... My other

inhalers are different...so now I'm on three different ones...Oh well,

could be much worse....

Speaking of eating..... Tomorrow a friend from out of town is driving

up my way and we'll have lunch in our favorite Mexican

restaurant....yum, yum... then she and her mom want to go see the new

earth dam. I'm hoping I can make this happen. I've only had one day

rest.... I'll take some pictures and maybe next week get them on the

internet...

Gosh, now I'm hungry....

Vicki-PM

ps:... Teddi.. can I go in your suitcase to Oregon.... ???????

[Guest guest]

Hi All, Okay where is the peanut butter fudge recipe????????? I am

going through some stuff aren?t we all. Not sleeping so I am taking 10

mil os ambien very mild pill. I never in all my life have had problems

sleeping. Letterman keeps me entertained.Got a very bad case of

scabies Doc kept telling me it was ecxma ha ha. This is truly awful.

Believe me I am Miss clean. Very iychy and dry skin and painful. I am

on medication now and the house is extremely clean STRESS OUT! So now

for the itching Doc has increased prednisone to 40mil a day over a 15 day

period then I will go back to 12mil. Is there ever getting off this

horrible stuff. Teddi when do you go down under? Take care all Love and

Aloha Helen

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[Guest guest]

Gee here I thought I was the only one who dumped the laundry on the bed!

Can't carry a full basket anymore, so I tote it in thirds. Can fold one

towel but not more than three in a row.... fortunately I married a man who

knows how to wash dishes. He is a sweet person but oh my, his cooking! I

tease him that I must have found the only Italian man on earth that can't

cook! Better to drink Zone Perfect shakes... I want so much to be able to do

" normal " things like bake a cake or something. I can, but have to get

someone to reach for things in cabinets for me, sit down while mixing and

stuff. Probably sounds like small things to complain about but I'm still

trying to adjust. Fortunately I have a big strong 15 year old son to groom

the dogs. He's taking over showing them and won his first show in March. Now

he REALLY wants to do some more shows but I'm trying to figure out how to

manage travel. Riding in the car for several hours is OUCH! By the time I

get there I'm too exhausted to stand, let alone socialize with anybody. Do

you have any pain meds that you take without causing car sickness or

sleepiness? I use ultram and Vioxx for the pain, skelaxin or clonopin as

needed, and ginger and licorice for the nausea or car sickness. Always open

to suggestions if you know of things that work better. The doctor I use now

is very sweet but doesn't seem to know a whole lot!

(unknown)

> - your story is very interesting- we all love and need to hear

> every one elses stories- it helps a lot. Vicki's suggestions for help

> are good ones. My kids are able to do a lot, but it takes a lot from

> me to get them motivated and keep them semi consistent, so i often

> end up just doing things myself. I am fortunate in that I am able to

> do a great deal and get around and drive quite well, except at times

> when I hurt a lot or get super fatigued. Naps help me a lot! Of

> course, not everyone is able to do that, but mi kids know that I need

> to and when I do, they are pretty good at being quiet enough. It's

> better when they are in school! Would hiring a part time cleaning

> person to help you out? Dont' let any pride get in the way-- I know I

> do at times. We all do. I'm determined that if need be one day, I

> will hire someone to help me occasionally, and scarf up the money to

> do it. (wishful thinking?)

> Vicki- good lung news from you! I am praying that you'll NEVER need a

> transplant, or that if you do, down the road, you'll get one when you

> need it and get through it with flying colors. I hear you about the

> critters-- my life would feel so empty without them, and each of us

> needs a passion in our lives, keeps us going.

> I think I asked a question about Aldolase and blood test a few days

> ago? Anyone have any info? or is that ne that doctors will routinely

> do for us with myo or autoimmune diseases? I probably should know the

> answer, but my mind hasn't " retained " . Love

>

>

>

>

>

>

>

[Guest guest]

> Ralph Becker produced the following text on 8/16/00

>

> > We're on vacation this week. We're not going away anywhere, but we do

> > have plans for a couple of day trips. Today, we're going to an

> > amusement park (I *love* the big coasters), and we also have tickets to

> > the Van Gogh exhibit in Boston.

>

> Day trips are a lot of fun. Let me know how you enjoy Van Gogh at

> the MFA. We dared to go to the MFA with our 3 and 5 year-old (just

> before the V.G. exhibit arrived). We had a good time, even though

> they are little. It just meant a shorter visit.

Our trip to the MFA was great! We had tickets to the 9:00 showing,

right at the museum opening. The show is called " Face to Face " and

it's limited to Van Gogh's portrait work; no landscapes or still lifes.

The show is chronological, documenting Van Gogh's short but brilliant

career from the early pencil drawings and dark portraits in the style

of the Dutch masters, to the brilliant color and haunting images he

used in the weeks before his suicide. We each rented headsets that

describe some of the paintings and provides other background

information.

Paintings seen live seem more lifelike, more 3-dimensional. Van Gogh

was truly a marvel - his use of color and brush strokes is incredible.

It was stunning at times to realize that the artist's hand had created

the images we were looking at.

Highly recommended.

Ralph

==========================================================

Ralph Becker http://www.ralphb.net/

Will Juggle for Food. RKBA!

[Guest guest]

Hi Helen, My gosh... I'm so glad you wrote... we miss your emails. I'm

also still waiting for Ann-Marie to let go with the Peanut butter fudge

recipe.... OK Ann-Marie...you really must share...lol

Helen, I'm so sorry to hear that your not feeling well. Isn't that just

the pits....

And now you have the skin problem..is there no end to all of this. I

understand the love/hate relationship with prednisone. But, it's a great

thing to have when you want it in a hurry. I just hate the weight gain.

Do you gain weight when you get on the high dosage?

Teddi is getting ready to go to Oregon.. It's me that will go Down Under

to Australia next July.....at least thats my thoughts.... only time will

tell if I can actually make it or not. I don't like to make plans since

I go through many twist and turns having this disease. As you well

know.

Hope your taking it easy and keep us informed on how the itch is coming

along.

Take care,

Vicki-PM

[Guest guest]

Hi ....well..sooooo your married to an Italian man... the name

DuRant must have been shortened.....it doesn't sound Italian..

I'm the same way about cooking.... I also have to get a stool to sit on

while I cook at the stove.... I had all my things that were important to

me dropped to the lower shelf but most of the cooking stuff was moved

to the pantry. I would say most of my stuff is now in my pantry where

it is easier to get at and I don't have to reach.

I wash in small loads... I can't stand there and fold for long .... so

the smaller load allows me to complete ONE task....

How wonderful to have your son able to show your dogs.... that is not

only great for you but what a wonderful thing for him to do. It's such

a good training tool for teenagers at that age. I'm such a believer

that if more teens would or could become involved in something.... there

would be less teens in trouble. It was the horses for my daughter.

Taking care of her horse and lessions and teaching other kids how to

ride, kept her really busy....Oh, lets not forget all the manure

cleaning she had to do. It's good for the sole.

I take Celebrex for my pain and I don't get car sickness nor sleepy....

I take 200mg in the morning and night. It has worked really well for

me. I see on this list that Vioxx seems to be the drug of choice. I've

never tried it since my Celebrex works so well for me.

Can you tell me what Clonopin is?

Take care,

Vicki-pm

[Guest guest]

Hi Vickki, Unfortunately I have lost weight down to a tiny 83 pounds

YUK! So peanut butter fudge sure would help HA HA! Have agreat weekend.

Love Helen

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