Re: Please tell me I am not the only one

January 8, 2003

Hello everyone!

i am sorry that i have not been talking much lately but i have been reading

my emails

I hope that everyone is well

I have a question for anyone that can help and i hope that i am not alone and

at the same time i wish this on no one

I have been so tired and my fever keeps getting the best of me but now i have

a new thing that has developed

It has been for about the last 5 or 6 weeks i can not do anything withought

my heart rate raceing and then i get so short of breath and i have to really

try not to pass out my mouth will get so dry.

My doctor sent me off to a tread mill test and after only one minute my heart

rate was so high that they had me stop. I was scared to death and the looks

on their faces it was mutual.

What i would like to know is if anyone else has had or has this problem. I

get to wait now until the doctoors put their heads together and decide what

to do next

They said they could not rule out a blockage becassue thay needed me to do

the test for about 5 minutes before they could rule that out but like i told

them i have a low cholesterol (And normally a low blood pressure)

Any input would be greaat right about now i am feeling so depressed it feeels

like everytime i turn around i have a new rock to climb over.

thanks in advance and take care everyone!

January 8, 2003

Hi Holly,

Not much info for you here. Just wanted you to know that I

care hon.

Also, I wonder how many of us could actually take a " treadmill

test " without passing out?? How many of us are in that good

of condition, I have no idea. Even years ago when I had the'

irregular hear beat problems etc. the doctors decided the

treadmill would be too much.

I *have* experienced the shortness of breath for years. When

I feel well long enough to do my walking or ride bike, the

breathing gets better. But, alas, that hasn't happened for

awhile. maybe tomorrow.(yeah right!!)

Thank goodness the doctors are alerted in case it is something

that needs medical attention.

As for the dry mouth. That *could* be from meds, or the disease.

I usually chew sugarless gum to help. Drinking a lot of water is a

good idea also. Dry mouth could also be something called " Sojourns

Disease. " (sp?) Some with the Stills get that. There is even a pill

that is available by prescription to help this. It is called " Salagen. "

(I've not tried it, don't know how well it works) for more information,

you can call 1-800-644-4811 or visit www.sevensignals.com

Take care dear friend, and please let us know what the doctors

decide to do next.

Hugs, tricia

*****************************************************************************

********************

I have a question for anyone that can help and i hope that i am not alone

and

at the same time i wish this on no one

I have been so tired and my fever keeps getting the best of me but now i

have

a new thing that has developed

It has been for about the last 5 or 6 weeks i can not do anything withought

my heart rate raceing and then i get so short of breath and i have to really

try not to pass out my mouth will get so dry.

My doctor sent me off to a tread mill test and after only one minute my

heart

rate was so high that they had me stop. I was scared to death and the looks

on their faces it was mutual.

What i would like to know is if anyone else has had or has this problem. I

get to wait now until the doctoors put their heads together and decide what

to do next

They said they could not rule out a blockage becassue thay needed me to do

the test for about 5 minutes before they could rule that out but like i told

them i have a low cholesterol (And normally a low blood pressure)

Any input would be greaat right about now i am feeling so depressed it

feeels

like everytime i turn around i have a new rock to climb over.

thanks in advance and take care everyone!

Holly

..

January 8, 2003

Hello,

No, you are not the only one, but whomever decided to put you on a treadmill

was a complete bonehead. If your fever has caused alot of night sweats,

like alot of folks with AOSD, you need to drink more water, because you may

be dehydrating which will also cause your blood pressure to go up. When I

was checked for the same thing I was at 145/99. Highly unusual. They also

determined my potassium level was very low, so they instructed me drink more

juices with a high concentration of potassium. I'm much better now in that

department.

God Bless Always,

Bob & Vivian Mirabal

Re: Please tell me i am not the only one

Hello everyone!

i am sorry that i have not been talking much lately but i have been reading

my emails

I hope that everyone is well

I have a question for anyone that can help and i hope that i am not alone

and

at the same time i wish this on no one

I have been so tired and my fever keeps getting the best of me but now i

have

a new thing that has developed

It has been for about the last 5 or 6 weeks i can not do anything withought

my heart rate raceing and then i get so short of breath and i have to really

try not to pass out my mouth will get so dry.

My doctor sent me off to a tread mill test and after only one minute my

heart

rate was so high that they had me stop. I was scared to death and the looks

on their faces it was mutual.

What i would like to know is if anyone else has had or has this problem. I

get to wait now until the doctoors put their heads together and decide what

to do next

They said they could not rule out a blockage becassue thay needed me to do

the test for about 5 minutes before they could rule that out but like i told

them i have a low cholesterol (And normally a low blood pressure)

Any input would be greaat right about now i am feeling so depressed it

feeels

like everytime i turn around i have a new rock to climb over.

thanks in advance and take care everyone!

January 8, 2003

Go Bob !!!!!!!

I agree with you one hundred percent. I've often read some postings and

haven't a clue what they are talking about or from whom. It would be like if

I had replied to your posting without any previous notes....like.... " I agree

with you one hundred percent " . Great, but what in the heck would I be

referring to? I like introductions and signatures also. So Stilligans,

let's have more of the complete replies from now on......purty pleeaassee...

)

Bob, do you think it's just us over fifty people that get annoyed? )

)

xxoo

Carmen

January 8, 2003

To the person that sent this e-mail thru the list:

I am not trying to give anyone a hard time or a bad

time but I just want to point out something! Now this message was sent thru

the list and arrived in my mail box from the stills disease .

Then of course there is the body of the message where you tell us about the

problems that you are having and ask if anyone else is having this type of

problem? Nowhere in this message does it say who you are? Not in the

beginning of the message or at the end? Now this message is not just to the

person who posted this message but to all of the Stilligans who post on this

list. Please, please sign you name at the end of your message so that we can

properly answer your questions. Again this note is not to berate anyone but

just a little hint to help out! Y'all take care now and be PAIN FREE! Love Y

all!

We Will Win

Love Y'all

Mom & Dad

Bob & Carole

Please Visit the International Stills Disease Foundation Web Site at:

www.stillsdisease.org

January 8, 2003

ok Dad we get it!!!

> heheheee

Sorry , it is such a Dad like message, I love it!!

Am I grounded now?

Love,

g.otf.m.

>

> To the person that sent this e-mail thru the list:

>

& nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbs

p; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp;

> I am not trying to give anyone a hard time or a bad time but I just

> want to point out something! Now this message was sent thru the list

> and arrived in my mail box from the stills disease . Then

> of course there is the body of the message where you tell us about the

> problems that you are having and ask if anyone else is having this type

> of problem? Nowhere in this message does it say who you are? Not in the

> beginning of the message or at the end? Now this message is not just to

> the person who posted this message but to all of the Stilligans who

> post on this list. Please, please sign you name at the end of your

> message so that we can properly answer your questions. Again this note

> is not to berate anyone but just a little hint to help out! Y'all take

> care now and be PAIN FREE! Love Y all!

>

> We Will Win

> Love Y'all

> Mom & amp; Dad

> Bob & amp; Carole

> Please Visit the International Stills Disease Foundation Web Site at:

> www.stillsdisease.org

>

January 8, 2003