(No subject)

[Guest guest]

thanks for your response, i know it really makes no difference what people

think, or what they think of me. also what is kinda funny. today after i find

out my job will be gone in june, the long term coordinator for my company

called about my workstation. asking me how soon i'd come back if the got my

stand up desk and a new chair. she is now gonna check with my manager to find

out what they are gonna do with me first. she also mentioned getting me into

some physical therapy. i guess she has a call into my dr's office to get info

on dimensions and she was gonna get me set up. just wierd 8am your job is

moving to tuscon, sorry, we'll try and find you something to noon, whe do you

think you can come back??

kathy

[Guest guest]

Hi Kathy,

Hope it is okay I jump in here. People just don't understand what this

disease or any disease is like until it is them. I am not defending this

person, but you just can't see pain. That is all there is to it. In

return you should not have to explain why you are tired or don't feel well.

A true friend would understand what you life is like. My friend that I go

to school with is the most understanding person in the world. Her daughter

has been diagnosed with RA but even before that she took me at my word no

questions ask when I wasn't feeling well. A lot of people think because

you can't see something it doesn't exist and we know how untrue this is. I

get looks all the time because I have a handicapped license plate. Now I

feel look all you want, you have no idea what my life has become or the

amount of drugs I take just to come to this store. We all do what we do to

try to get the best quality of a life. If this person doesn't understand

that, it is her problems not yours and she really is no friend.

Don't let her or anyone else upset you. You and only you know what you

can and can not do. Live your life the best you can and let her wonder why

you are tired or can't do something. Know that you are doing the best you

can.

Me Mom

----------

> From: kringlemom@...

>

> Subject: [ ] (no subject)

> Date: Sunday, February 18, 2001 11:11 PM

>

> i really don't like it when people think there is nothing wrong with you.

my

> neighbor asked me tonight, what do you mean your tired?? you don't do

> anything. why do you think you are so tired? what is taking your energy?

gee

> do ya think it is because i sleep about 5 hrs a night, or the fact i was

in

> so much pain this morning that i started my day taking codene, and i had

to

> go in the shower for over 1/2 hour before i could move my shoulder

without

> crying. ok you're right, there is nothing wrong with me and i am just

getting

> old, and she thinks we are friends?? this is why i don't even bother

anymore.

> just tired of defending myself. ok whatever.....

>

>

>

>

>

> kathy

>

>

>

[Guest guest]

i loved the comment keep your chins up!!! that was great!!!

kathy

[Guest guest]

and like paul said oh i have ra.... yeah right and it went away last week

right?? you and your aspercreme or whatever!!!

kathy

[Guest guest]

Kathy, Amen to what you said. People say oh, you look so good! (I feel like

saying maby but makeup does wonders and I feel so crappy)! I just say thank you

and know they will never understand. Keep your chins up. Love Cheryl in

California

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

From: kringlemom@...

Sent: Sunday, February 18, 2001 11:11 PM

Subject: [ ] (no subject)

i really don't like it when people think there is nothing wrong with you. my

neighbor asked me tonight, what do you mean your tired?? you don't do

anything. why do you think you are so tired? what is taking your energy? gee

do ya think it is because i sleep about 5 hrs a night, or the fact i was in

so much pain this morning that i started my day taking codene, and i had to

go in the shower for over 1/2 hour before i could move my shoulder without

crying. ok you're right, there is nothing wrong with me and i am just getting

old, and she thinks we are friends?? this is why i don't even bother anymore.

just tired of defending myself. ok whatever.....

kathy

[Guest guest]

Hi! Judy in AZ this is Cheryl in California. You made me laugh! They always hit

me with the vitamin and herbal thing too. It also seams someone knows someone

who knows a Dr. who can cure Lupus or Fibromyalgia

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

From: JHend65291@...

Sent: Monday, February 19, 2001 12:50 AM

Subject: Re: [ ] (no subject)

Boy does that sound familiar ....I tend to keep to myself anymore ..even my

kids get tired of Mom being tired or complaining anymore...I live in an apt

and tend to keep to myself. Through the yrs I have friends still but most are

working, some have OA and take over counter drugs for it..they cant

understand why I cant just get through the pain and get on with life...I

actually have heard from many people how lucky I am bcs I stay home all the

time and get 1100. a month in SS.....wow, noworking.(what do they think I did

for 25 yrs in order to get it? )I have learned not to listen to strangers

anymore...since coming into this group I don't feel so alone. We all know the

pain is real, and that we wouldnt be treating ourselves with all these meds

unless we had to...God , what is it with people? My favorites are the ones

who say , did you ever try vitamins? maybe if you just tried to exercise and

eat right? Sometimes it is so frustrating...Judy in AZ

[Guest guest]

kathy

[Guest guest]

> " Lyle Rolph " <lyle-cheryl@...> wrote:

>

>Kathy, Amen to what you said. People say oh, you look so good! (I feel

>like saying maby but makeup does wonders and I feel so crappy)! I just say

>thank you and know they will never understand.

I've started telling people, " Thanks, I am currently enjoying drug induced

health. " <g>

/Celine Kossart

kozys@...

[Guest guest]

Kathy: Bless your heart. They are sure giving you a hard time. Obviously,

they don't have a clue about what you are going through. Don't let push you

into making a decision. Your health is too important. They don't understand

that your immune system is shot and you don't have the physical strength to

manage even the smallest tasks at time. Fight for your rights. We are

thinking about you.

Jan

[Guest guest]

thanks and it just seems to be happening all at once. i called the dr's

office so many times and they would say pamper yourself. have some chicken

soup. (this was just yesterday!!) to well i need a definative answer!!! are

you willing to go back to work??? i just got a call from the dr's office

again!!! they are trying to fit me in on the cancellation, but they also just

rec'd my ss papers, so i need a 1/2 hr appt so that will even be harder to

do. just 2 min later yes just now again she called and guess what!!! they

just had a cancellation for a 1/2 hr appt. 3/19 at 9am so i can get it all

figured out i hope!!! but i'm sure someone was getting in trouble because my

case was just sitting somewhere. now that they found their desk again (at the

ins co!!) they pushed some buttons and pushed the dr's office.

kathy

[Guest guest]

Oh, Kathy, yes! I am so glad to hear. Now you try to relax until then and do

what they said, pamper yourself! Take some candles into the bathroom, some

soft music, maybe some nice potpourri or incense and soap in a nice bubble

bath!

Hugs, Rainy Sue

> they

> just had a cancellation for a 1/2 hr appt. 3/19 at 9am so i can get it all

> figured out i hope!!! kathy

[Guest guest]

thanks. i still have to call work and see if they will extend my benefits for

a week until i see the dr. if not i'll either have to get another note from

the dr, or take my vacation time.

kathy

[Guest guest]

god what a day!!!! no one should have to go thru this. i am sick and need

treatment, not a run around!!!! every time i called or went to the office

that is the 1st question i ask. are you part of open access w/trustmark?? oh

yes. so i called to pre-cert my procedure and they gave me the # told me

everything was fine asked if anything else they could do. yes, could you

please double check that both dr and hospital on open access. let me check,

i'll have to go thru 18 mos worth or records here. no he is not. no either is

the hospital. you'll have to call trustmark for benefit info. called tmk they

told me $1000 ded. for out of network and 70% coverage. crying i ask if they

can help me find a dr in the plan, she tells me to call pchs. i went on line

at phcs, looked up hospitals first. lake forest and st therese. then i looked

up gastroenterologist affiliated w/ lake forest hospital and start to try and

explain the mess i am in and can someone help me. the best i got was consult

on thursday at 9:30. i call the dr's office i was scheduled with tomorrow and

told them of the news. she took down the info and said someone would call me

back. about an hour later someone who handles the insurance at the office

called me back explained they were sorry but the other dr (who i was

scheduled with in the 1st place before they asked me to change last week) WAS

part of the plan, and was on staff at lakfe forest. so would i mind having

him do it. sounded like it'd be quicker than starting all over again. so yes

ok. she said she couldn't promis tomorrow but she would see what kinda of

miracle she could pull. she calls me back and tells me tomorrow at 9:30 i

should be there. she would call and pre cert and i didn't have to do anything

else. so i call jean back and tell her we are on for tomorrow. i tried to

call and pre cert but lines were very busy. an hour later i got a call back

from her again. she is sorry no matter what she has done they are NOT part of

the plan!!! BUT they feel bad for their mistake and would hate to see me wait

because of their lack of knowledge. so the dr has agreed to waive all fee's

not paid by insurance including my $1000 ded and 30% co-insurance!! so i

called and pre certed again and cancelled my other appt. i am glad i decided

not to eat. i have such a headache after all of this. my internist called me

back to apologize too, he said i don't treat people by what insurance thy

have. i treat their symptoms and illnesses. so now i am having it done

tomorrow by some dr i've never met and at a different hospital!!! now i am

trying to enjoy my sprite and jello!!! hope you all have better days and

never have to go thru anything like this!!! just glad i found out before the

bills came!! just think if i wouldn't have asked that. also the lady said

that i should definatly go over the 1000 ded tomorrow, so i should be able to

see him for the year for any needed treatment for my $15 co-pay. if anything

else is needed. labs or whatever. i'll just instruct them to use lake forest

and i s/b ok!! so i think i finally have this straightened out!!!

kathy

[Guest guest]

Kathy,

I feel so bad for you today. Glad that you found someone to do the procedure

for you, but the hassle. I work for one of those f*****g HMO companies. We

get so many calls from md's offices who are uneducated that I can only

imagine what they turn around & tell their patients. One of the problem is

the high turnover in the doctors staff that makes our education of them next

to impossible. As a member, you can file a complaint, so that your HMO

company knows that they have to go out & educate the staff. This does not

reflect negatively on the the md or the staff, that is what they are there

for. I, myself, have filed several complaints against providers with my

company & have never been treated any differently thereafter. It all comes

down to them providing a service & if they don't provide the right service,

you have the right to complain. Hopefully with all this resolved, the

actual procedure will be a breeze. I myself have no face to talk,I just

canceled my GI appointment tomorrow & I KNOW he has one of those in mind for

me along with an upper endoscopy. I don't know why they just don't get a

giant roto rooter & snake the entire pipe system !!!!! LOL

I will be keeping my fingers crossed for you....

In my prayers always,

Gentle angel hugs

Debs

[Guest guest]

thanks deb. and i survived. they did both upper and lower. seems to have gone

well but i remember them fighting me to swallow the tube!!! i heard someone

say a polyp, but they said nothing about it to my mil. she was so nice we

stopped at denny's on the way home got myself a scram slam!!! also went back

for dinner!! nice to be able to eat again. i was a little groggy this

afternoon but ok. my dad found out he DID have a stroke in december. but my

stubborn dad i'm not going to the hospital, we are going up north to be with

family for x-mas. he has had some weakness on his left side but could regain

it. he went back home and sometime jan/feb won the 8 ball championship. so

for the most part he is feeling a little better. so that makes me feel

better. my mom says she is not gonna let him fight her next time. ok i've

heard that before. he is just a very stubborn man and has very strange

reations to medications. can't handle side effects, just like me.

kathy

[Guest guest]

Kathy,

glad to hear that your " snaking ordeal " is over. me, I just put it

off.......Again, I am sorry that your insurance company gave you such a hard

time, that really isn't most of our goals........My husband has once again

lost his job today, second time this year. At his age, he is a victim of age

discrimination & that makes it very difficult. I am still waiting to hear on

my long term disability application & my knee surgery is 1 1/2 week away.

Right now, I am ready to cancel my appt for the surgery because that will

keep me off of work for a few days & without my husband working, somebody has

to bring home the bacon. This is not a very good day & today is my

husband's birthday. When I went for my pre op yesterday, my nephrologist

told me all about the various problems that are awaiting me with all the

medications that I have to take, ie kidney trouble, liver problems,

etc.....There have been times today that I wonder if it is all worth the

effort it takes to go day to day.

Oh well, get some rest & let us know the test results when you get them.

Feel well my friend,

Love,

Debs

[Guest guest]

i know it is hard but you must keep going. if your husband is not working and

you are not working can't you apply for ssi? unemployment insurance??? public

aid? something to get you through the rough spots. you need to have this

surgery and get you knee fixed. other things will work out. i feel bad my

mom has just made my 4th car pymt. now i feel guilty if i think about selling

it. she has invested so much to help me keep it. all the work before x-mas

and every car pymt since. i have to wait and see if i am going back to work

or not before i make that decision.

kathy

[Guest guest]

hey judy, well i saw my internist and a urologist today.at the internist he

sai my blood pressure is up, he told me all about my stomach problems. guess

he removed a polyp and he did find some bleeding in my esophogus. he

mentioned c/b reflux or hiatal hernia, or from meds. i do have blood in my

urine. (again, or as usual) but didn't think infection. so i asked what else?

maybe tumor, stone, so he wanted me to do an ultrasound and ivp. but sends me

up to the urologist office. they actually took me right in!! psoitive blood.

ran blood test for kidneys and wants a ct scan abdomen and pelvis. before he

does a cystoscopy on the 26th. i got to my car and the other dr got my ivp

scheduled the 15th. they are gonna converse to see if i need all tests. but

when i got home and was showing the pix of my blood in throat. i was

thinking, if this can cause blood in my stool, why not my urine???my schedule

next week is kind close. chiro mon & wed. thursday i go for the ivp and also

the gastro for official feedback. friday i go for the ct scans and to the eye

dr to get dialated!! ( i am always a vampire after that!!) THEN MONDAY THE

BIG VISIT WITH THE RHEUMI. i'm tired already!!

kathy

[Guest guest]

YOU KNOW I THOUGHT MY DAD WAS VERY,VERY,VERY, ODD. HE WAS PLAYING CARDS ONE

NIGHT WITH SOME FRIENDS AND STARTED RUBBING ON HIS CHEST, HIS WIFE SAID ARE

YOU READY TO GO AND HE JUST KEPT TELLING HER, " OH LETS PLAY A COUPLE MORE

HANDS " 4 OR 5 HANDS AND A COUPLE OF HOURS LATER HE FINALLY WENT TO THE

ER. THEY ENDED UP HAVING TO DO EMERGENCY QUADRUPLE BYPASS SURGEY. HE

DOESN'T SEEM TO HAVE EVEN THE SLIGHTEST, HINT THAT ANYTHING EVEN TOOK PLACE.

I DIDN'T THINK THAT THERE WAS ANYONE OUT THERE AS STUBBORN, BUT NOW THAT I

THINK ABOUT IT I GUESS THERE ALWAYS WILL BE. I ALWAYS THOUGHT OF MYSELF AS

BIENG THAT WAY BUT I DO HOPE THAT I WILL HAVE THE GOOD SENSE TO UTILIZE THE

WONDERFUL TECHNOLOGIES OF MODERN DAY SCIENCE, LONG BEFORE I NEED TO, HE

WOULDN'T EVEN DO THAT. YES; HE'S A VERY, LUCKY MAN.

[Guest guest]

Hi,

I have low grade fever when I'm having a flare. My face burns with heat

and turns red in big splotches. People at work are finally getting used to

it and ask me if I need a hand or a break. I teach science to 7th graders in

an inner city school in Oklahoma.

[Guest guest]

Kathy,

I ran a low grade fever every evening for many years when my RA first

started. For some reason, the fevers stopped after a few years but do start

again when an RA flare starts.

Sounds like you had a good report from the GI doc. You were due some good

news in life.

I love reading all of your posts about the green beer. , knows me too

well - I will be there for the chocolate.

Hope tomorrow is a good day for you.

Pat

At 07:19 PM 03/15/2001 -0500, you wrote:

>i was telling my mom of my fevers. i run between 99-100 almost every day.

>does this happen to anyone else?? the gi dr said polyp no big deal, i have

>esophagitis and gastritis. probably from the meds. gave me a drug thats not

>even availible in the pharmacy until the 19th. nexium. www.purplepill.com

>anyone hear of this?

>

>

>

>

>

>

>

>

>

> kathy

>

>

[Guest guest]

i think it's from the inflammation, trying to stay away from food and drink

until after the ct scans at 9am

kathy

[Guest guest]

Kathy,

jesse runs 99.7 normally but it can go up to 102 some days. i use him to tell

if the other kids are running a fever of 100 and over. thinks its funny

that if his brothers are hotter then him i get the therm. out.

[Guest guest]

Connie,

This is a real shocker. Thanks for letting us know. I'll be doing the paper

test on all my candles!

a

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

From: ConnieRon@...

Sent: Wednesday, March 28, 2001 9:12 AM

Subject: [ ] (no subject)

Good info on toxic candles.

<A

HREF= " http://www.allhealth.com/conditions/trauma/gen/0,4260,277_215747,00.html " >\

Are Your Candles Toxic?</A>

[Guest guest]

thanks, you are totally right, i have no control over my job. i either can or

i can't.

kathy