VIVI

[Guest guest]

Hey VIVI

How long have you had the fibro?

Amazing how just some body showing interest can help the need we crave &

didn't even know it.

How TRUE!!

 

I don't know HOW they can even sort out all the diferent symptoms & pains

from F.M AND Stills or when it's one thing or another it's just too much going

on in one body at the same time.

Right now I am having fevers of up to 103*..the PCP does not know if it is a

virus or a flare starting!!!  I am praying for a virus!!  Sad huh!

Diane..42 

[Guest guest]

Vivi:

We haven't met yet, so HI! I'm Ellen. I'm glad to hear your doctor

is trying something else. Though I must tell you it's sometimes a

crap shoot as to what works with us.

I tried MTX (Methotrexate) for two months and then moved onto Enbrel.

Had to go off it for a little while due to an infection but I'm back

on and feeling a whole lot better.

We'll chat again soon. Right now my son is pushing to go out to buy

new jeans. 15 year olds - what are you going to do?

Take care and be well.

Ellen

[Guest guest]

Hi

**************Get fantasy football with free live scoring. Sign up for

FanHouse Fantasy Football today.

(http://www.fanhouse.com/fantasyaffair?ncid=aolspr00050000000020)

[Guest guest]

Hi Ellen

My RD. doesn't even know what It is I've got !! She knows it is alot of

inflamation.... so she's trying to get those symptoms under control & started

wt.

the Pred, then 2nd . visit.. the Planequil & NOW 3rd. the MTX.

Why did you have to get off that? Well It seems at least if they DO keep

trying you on something diferent When you do NOT respond you do have the chance

to get on with the " right " combination !! I've seen patients been on the same

med's for yrs. & continued to be very sick...So I'm a bit relieved thet

she's trying. She told me that I'd see in about a mo. if it did work or not.

That

it either helped or NOT. I'm hopefull (now)

that's subject to change depending on how long I stay sick... you know how

that feels !!

I see you posting often & know a lil'l about you. Hope things work out wt.

you too.

VIVI

**************Get fantasy football with free live scoring. Sign up for

FanHouse Fantasy Football today.

(http://www.fanhouse.com/fantasyaffair?ncid=aolspr00050000000020)

[Guest guest]

Good morning Vivi!

You asked why I stopped using MTX. It turns out I was allergic to

it. Another unusual aspect of me. Oddly enough I had started with

the pills but they upset my stomach something awful so we switched to

self injections. Once I learned how to do it, it wasn't a problem

but the reaction after the shot was. I did that for about four weeks

until I saw the doctor. Dumb move on my part.

Anyway, he said " let's try Enbrel " and thar's what I've been using

since. Well, that and prednisone and ibuprofen 800 and hydrocodone

when I absolutely have to. Oh, and let's not forget the vitamin D,

folic acid and water pill. I've turned into a walking pharmacy!

Vivi, I've been living with Still's for 13 years and finally found a

RA that wants to help and I'm finally willing to allow it. It's a

new adventure - go with it!

Take care and be well.

Ellen

[Guest guest]

Hi Ellen

You're so right. Glad to hear you're doing good. Guess I'm pretty much on

the same stuff . Pred.( she does want me off of it once the MX kicks in, the

Hydrocodone, vitamin D (that from the old Rd who's treated me for F.M for 9 yrs.

& wouldn't lissten to e when I said there's something ELSE going very bad

here. But I do need something for the pain & didn't want to sak the new one

till she had a diagnosed so she'd teat me serious about finding the underlying

cause NOt just cover it up.I'll bring it up to the new one once she's steaddy

on treating me, cause I do not need 2 RD's. Specialy one that does not help.

I do feel " hopefull for the firs time in 5 yrs. that I could possible

improve enought to have a life, even if it means ahaving to take meds. for the

rest of my life.

Now I have a grandauther I'll love to spoiled!!.

VIVI

**************Get fantasy football with free live scoring. Sign up for

FanHouse Fantasy Football today.

(http://www.fanhouse.com/fantasyaffair?ncid=aolspr00050000000020)

[Guest guest]

P.S

Thanks for the input. She did mention to take it at night cause it is hard

on the stomch, wish mine is very sensitive .I could never tolerate any thing of

the aspirin family... So ggod to hear it come in injection form.

Alsio Tom. I see the new PCP also & I'll ask about the folic acid & many

other issues we don't know if are related & neede sorted out.(like I got high

colesterol that the " optalmoligist " found & I had no idea, so could be reazon

for tackycardia attacks? Potassiuom loss?..) the OBGYN recomended this one . I

need them all to work TOGETHER!

Have a great day

VIVI

**************Get fantasy football with free live scoring. Sign up for

FanHouse Fantasy Football today.

(http://www.fanhouse.com/fantasyaffair?ncid=aolspr00050000000020)

[Guest guest]

I sure believe that . I disclosed to her the whole story, & list of med. I

also told them at the ER visits I didn't need any pain med. I had muy own

cause the first thing out of their mouths is are you out of mpain med? so they

also have waht I take I refused any thing else. \Once I had NOT taken it in 2

days ... & that's what they put on the report about the sweats & chills... DUE

to whitdrwals! The thinng is I still had them 3 days latter & every month

after that.

So I have muy list of meds. I do disclosed them every time I had to see a

specialist or any Dr.That's why I did not ask the new one to take that over

right being new.

I wish she'll offer so I don't have to ask . She knows I have the other Rd.

was the fis thing was on muy recoirds bout FM.

Thanks to the many that abuse them now we do pay the price when we really

need it.

take care

VIVI

**************Get fantasy football with free live scoring. Sign up for

FanHouse Fantasy Football today.

(http://www.fanhouse.com/fantasyaffair?ncid=aolspr00050000000020)

[Guest guest]

Vivi:

In the olden days, doctors used to talk with one another. It seems

there's no more of that due to time constraints. Whatever the

reasoning, I almost feel as though I need to carry a file with me

every time I go from one doctor to another just to keep everyone up

to date.

It's a good thing I'm honest about my meds especially the pain

killers. I could see how people could get addicted to these things

and go from doctor to doctor filling scripts. My RD is very smart

and won't give me more than one script at a time for the

hydrocodone.

Good luck with the MTX and enjoy your grand daughter! If nothing

else she'll keep you going.

Take care and be well.

Ellen

[Guest guest]

That Is horrible !! I hope she reported it. Even if she couln't get them

back there should be a report because It ovbiuosly was somebody she talked to or

from the pharmacy, & could've happened before & have a record. > Maybe I

need to work on that but I have NO sympathy for those poeple & their so called

addiction desease.There are poeple in real pain that should be able to get

them & can't & others I can't see how in the world they get them.

I have to get mine in the mail or it's not cover by ins. Once It was

late.... So I called medco , they treated me as If I was making it up & was

trying

to get them again, & threathen to call my dr. I told them you should've done

it allreaddy the first time I called to inquired 3 days after they said it

was to get here. It happped the post office said to report it but they

couln't do any thing about it either. So I was gonna be out for 3 mos. It just

happened that it arrived exactly as the policeman was arriving to take the

report. 17 days behind & all tore up & taped together. So he had the mailwoman

" sign " the paper indicating when & the time she had deliverded it. I had to fax

it to Medco. & the Dr.'s since we'd to call them. From now on I have to pay

extra just so I can have a confirmation # in case I need to complain we'll be

able to put the trace.

& when we leave town I take my pill box & leave the rest with my neigbors. I

have been wt. this dr. for 6 yrs. & never , ever had to call it earier, call

for more Or exuses that It was lost so I was mortified. So It was a blessing

that the cop showed up at the same time the mail was delivered & thought to

make her sign the date & time so I could prove it. It was just then I

realized how bad the situation was about this.

Thanks for the tip about taking the file > I do have an envelope wt. All my

reports I've gathered for specialists & ER " s & any test. I try to request

them as I get stuff done, so I don't have to be sending release forms & waiting

later.

Sleep well

VIVI

**************Get fantasy football with free live scoring. Sign up for

FanHouse Fantasy Football today.

(http://www.fanhouse.com/fantasyaffair?ncid=aolspr00050000000020)

[Guest guest]

As it happens one of the people I work with told me his wife was

robbed of her pain meds right outside our store. Someone must have

known what she was picking up. I asked if they reported it but he

never told me yes or no. All he said was she is now without her pain

meds. It's a sad world, that's for sure.

Take care and be well.

Ellen

[Guest guest]

Sorry Ellen., I wrote you back but forgot to put your name on it

WISH YO THE BEST AT THE dr.'S TOM.

vivi

**************Get fantasy football with free live scoring. Sign up for

FanHouse Fantasy Football today.

(http://www.fanhouse.com/fantasyaffair?ncid=aolspr00050000000020)

[Guest guest]

Not a problem Vivi. I've actually read what you wrote but don't have

much in the way of time to respond right now. The cleaning service is

here and the dogs are still going crazy so my concentration is pretty

poor right now.

was nice enough to call the cleaning service for me since I can't

clean properly anymore. These guys do an incredible job! Oy! The

noise of the dogs, I have to go.

Oh, things went fairly well at the doctor's, thanks for asking. I

have a blockage between my throat and the middle ear, need to add

allergy pills to my daily mix.

Take care and be well. I'll write more later on.

Ellen

[Guest guest]

Vivi

 I am one who can not get them because of all the bad that has been done and or

stated on the news about the pain meds so now my docs will not give them and I

have been pulling tooth and nail trying to get some . as like you some days the

fibo pain is to much to deal with on top of the stills junk and it was the only

way I made it . I even had one doc tell me " ya know there is no cure so you have

to learn to live with it " well I fierd right back what the f do you think I have

been doing for the last 7 years? but still no help and this is also why I

changed docs again . now the ones i have are good but again getting some pain

meds for the break threw is still a fight and I get so dam p@#ed off but i still

will not stop asking and tell I do what i can and have to so that i can make it

day to day . grrr

 

the  rednecks

Marty & G.

the redneck's my space http://www.myspace.com/martyg58

 

 Stills ; An illness I know to well!

To learn about Stills  http://www.stillsdisease.org/stills_info

If you find yourself in a hole, the first thing to do is stop diggin'.

 

In the old days a man who saved money was a miser; nowadays he's a wonder. 

~Author Unknown

 

" Taking my gun away because I might shoot someone is like cutting my tongue out

because I might yell `Fire!' in a crowded theater. "

-- Venetoklis

 

a government and its agents are under no general duty to provide public

services, such as police protection, to any particular individual citizen...

-- Warren v. District of Columbia, 444 A.2d 1 (D.C. App.181)