RE: New to site (Anita)

[Guest guest]

Anita, welcome to the group. Your posts are displaying fine. Sorry that Still's

is effecting your life but you are in the correct place. If you have any

questions, concerns, comments or just need to vent - let 'er rip. This is a

great group and can answer most any question, or has someone who has experienced

similar symptoms to what you are encountering.

Anita0923@... wrote: Hi everyone. Not sure I'm doing this right so

I'm not going to blab on until

I get a response. Thanks in advance.

Anita

my email address is anita0923@...

[Guest guest]

In a message dated 11/29/2007 12:35:46 AM Eastern Standard Time,

jax4christ@... writes:

> ubj: Re: New to site (Anita)

> Date:11/29/2007 12:35:46 AM Eastern Standard Time

> From:jax4christ@...

> Reply-to:Stillsdisease

> To:Stillsdisease

> Received from Internet:

>

>

>

> Anita, welcome to the group. Your posts are displaying fine. Sorry that

> Still's is effecting your life but you are

>

>

>

>

>

Thank you to jax4christ for responding. I just got back from taking my

daughter to school. What a struggle for me to get up in the morning, try to

look

presentable and take her to school because my unsupportive husband feels its a

way to get me out of bed and be active instead of sleep all the time and be

lazy.

Today is an unusual day for me to be on the computer. My 21 year old son is

a med student and he doesn't have classes scheduled for Thursdays. So unless

he goes to school to study or has something to do like today he had to take

his car in for some kind of service because of some recall. Can you imagine?

He has a 2008 Avenger, Dodge and there's already a recall?

I'm havng a bad day. Very tired and in a lot of pain. I'm going to my

family doctor at 2 becaus the results from my lab tests now indicate my

cholesterol

and sugars are high! GREAT! On top of STILLS, DIVIRTICULITIS, ULCERATIV

COLITIS, ULCERS, ARTHRITIS IN MY SPINE AND EVERYWHERE ELSE. I don't know whats

next. Then next Wednesday or Thursday I'm going to the rheumatologist for the

synovisc shots in my knees. It's a series of 3 shots in each knee for 3 weeks.

The last time I had that done was the day before my insurance ran out and

believe it or not my knees were pretty good for about 6 months. Some pain and

discomfort but not dibilitating.

I shouldn't even be on the pc now, but I enjoy learning more and talking with

people who have at least Stills in common because family, particularly my

husband and son aren't supportive. They think I'm just lazy.

Again thanks to Jax?

Anita

[Guest guest]

Hi Anita:

My name is Bob and I am the Scty/Treas of the Stills Found. I

would like to send you copies of our Brochure that tells all these know it

all's about stills and how to cope with it. It also tells them that it's not

laziness but a true disease! You might want to hand one to your husband and

of course give one to your son who is Med student as he will need it! Then

if you would kindly pass the rest out to " Friends " , Family, Doctors and

Emergency rooms at hospitals it would be greatly appreciated. That is the

only way we can get this information out to these know it all's who say that

it's all in your head or your faking it or your just lazy! Yes, we have

heard them all and we like to set them on their butt's by showing them the

proof. If you will send me your full name and mailing address I will send

you the Brochures and there is no cost at all unless you would like to make

a donation but it is not required. Take care now! Love Ya'll!

" WE WILL WIN "

Love Ya'll

" NEVER FIGHT FAIR "

Bob & Carole

Dad & Mom

Panama City, FL 32404

Please visit the International Stills Disease Foundation Web Site at:

www.stillsdisease.org/. Please make Tax Deductible Donations to the all

volunteer, International Stills Disease Foundation Inc., 1123 S. Kimbrel Ave.

Panama City, FL 32404. Thanks!

[Guest guest]

In a message dated 11/29/2007 1:30:32 PM Eastern Standard Time,

oldgoat378@... writes:

> ubj: Re: New to site (Anita)

> Date:11/29/2007 1:30:32 PM Eastern Standard Time

> From:oldgoat378@...

> Reply-to:Stillsdisease

> To:Stillsdisease

> Received from Internet:

>

>

>

> Hi Anita:

> My name is Bob and I am the Scty/Treas of the Stills Found. I

> would like to send you copies of our Brochure that tells all these know it

> all's about stills and how to cope with it. It also tells them tha

>

>

>

>

>

Hi Bob: Oh it sounds and feels like I may have found an angel in you. Yes

please send me whatever you can. I honestly can't donate anything right now

but will as soon as I can. Anita Bagce, 152 Lakeview Avenue, Paterson, NJ 07503

[Guest guest]

Bob,

Is there a way I can get my hands on some of these brochures? I recently

moved and have all new docs I'm trying to get up to speed..

(I think you may remember me from August? Mc)

-- Re: New to site (Anita)

Hi Anita:

My name is Bob and I am the Scty/Treas of the Stills Found. I

would like to send you copies of our Brochure that tells all these know it

all's about stills and how to cope with it. It also tells them that it's not

laziness but a true disease! You might want to hand one to your husband and

of course give one to your son who is Med student as he will need it! Then

if you would kindly pass the rest out to " Friends " , Family, Doctors and

Emergency rooms at hospitals it would be greatly appreciated. That is the

only way we can get this information out to these know it all's who say that

it's all in your head or your faking it or your just lazy! Yes, we have

heard them all and we like to set them on their butt's by showing them the

proof. If you will send me your full name and mailing address I will send

you the Brochures and there is no cost at all unless you would like to make

a donation but it is not required. Take care now! Love Ya'll!

" WE WILL WIN "

Love Ya'll

" NEVER FIGHT FAIR "

Bob & Carole

Dad & Mom

Panama City, FL 32404

Please visit the International Stills Disease Foundation Web Site at: www

stillsdisease.org/. Please make Tax Deductible Donations to the all

volunteer, International Stills Disease Foundation Inc., 1123 S. Kimbrel Ave

Panama City, FL 32404. Thanks!

[Guest guest]

> Hi Anita.

My name is Ed, welcome to the group

in reference to your unsopportive husband

here are a few tips:

>here's a website that might help him understand

http://www.thedoctorwillseeyounow.com/articles/arthritis/aosd_8/

Summary

Though not common, AOSD is a serious and potentially debilitating

disease that can cause serious damage and other problems to the

joints, heart, lungs, liver and spleen. While some AOSD sufferers

have only a mild form of the disease that responds well to safe NSAID

drugs, others come down with a severe, chronic form that is more

difficult to treat that can cause long term pain and disability or

even death. While we have a lot to learn about how AOSD works and how

to treat it, some progress is being made.

also remind him that on the wedding vows

" you will be there for each other in the good and in the bad till

death do you part "

I hope you feel better and we will be praying for you and your

husband.

=]

hugs,

ED

In Stillsdisease , Anita0923@... wrote:

>

> In a message dated 11/29/2007 12:35:46 AM Eastern Standard Time,

> jax4christ@... writes:

> > ubj: Re: New to site (Anita)

> > Date:11/29/2007 12:35:46 AM Eastern Standard Time

> > From:jax4christ@...

> > Reply-to:Stillsdisease

> > To:Stillsdisease

> > Received from Internet:

> >

> >

> >

> > Anita, welcome to the group. Your posts are displaying fine.

Sorry that

> > Still's is effecting your life but you are

> >

> >

> >

> >

> >

> Thank you to jax4christ for responding. I just got back from

taking my

> daughter to school. What a struggle for me to get up in the

morning, try to look

> presentable and take her to school because my unsupportive husband

feels its a

> way to get me out of bed and be active instead of sleep all the

time and be

> lazy.

>

> Today is an unusual day for me to be on the computer. My 21 year

old son is

> a med student and he doesn't have classes scheduled for

Thursdays. So unless

> he goes to school to study or has something to do like today he had

to take

> his car in for some kind of service because of some recall. Can

you imagine?

> He has a 2008 Avenger, Dodge and there's already a recall?

>

> I'm havng a bad day. Very tired and in a lot of pain. I'm going

to my

> family doctor at 2 becaus the results from my lab tests now

indicate my cholesterol

> and sugars are high! GREAT! On top of STILLS, DIVIRTICULITIS,

ULCERATIV

> COLITIS, ULCERS, ARTHRITIS IN MY SPINE AND EVERYWHERE ELSE. I don't

know whats

> next. Then next Wednesday or Thursday I'm going to the

rheumatologist for the

> synovisc shots in my knees. It's a series of 3 shots in each knee

for 3 weeks.

> The last time I had that done was the day before my insurance ran

out and

> believe it or not my knees were pretty good for about 6 months.

Some pain and

> discomfort but not dibilitating.

>

> I shouldn't even be on the pc now, but I enjoy learning more and

talking with

> people who have at least Stills in common because family,

particularly my

> husband and son aren't supportive. They think I'm just lazy.

>

> Again thanks to Jax?

>

> Anita

>

>

>

>

[Guest guest]

Hey Bob,

Can I get a copy of the brochure sent to me also?

Thanks

Diane  42

tototoo42@...

>

>

> Hi Anita:

> My name is Bob and I am the Scty/Treas of the Stills Found. I

> would like to send you copies of our Brochure that tells all these know it

> all's about stills and how to cope with it. It also tells them tha

>

>

>

>

>

Hi Bob: Oh it sounds and feels like I may have found an angel in you. Yes

please send me whatever you can. I honestly can't donate anything right now

but will as soon as I can. Anita Bagce, 152 Lakeview Avenue, Paterson, NJ 07503

[Guest guest]

Welcome Anita

Everyone in the stills family fully appreciate how you feel but why oh why

do we still feel we are being lazy when we know that we are ill and have to

get through each day as best we can. My grandson is only 5 and he came

bouncing in to see me from a lively game of football and said “you are

always resting on the settee you are lazy” I know at 5 he didn’t understand

but I burst into tears I am just so not lazy and I know that but am so

sensitive to what people say I must try and get a thicker skin.

I hope that your doctor can help you with the pain and wish you all the best

for next weeks injections.

Take care

Best wishes

Joan U.K.

_____

From: Stillsdisease [mailto:Stillsdisease ]

On Behalf Of Anita0923@...

Sent: 29 November 2007 13:51

To: Stillsdisease

Subject: Re: New to site (Anita)

In a message dated 11/29/2007 12:35:46 AM Eastern Standard Time,

jax4christyahoo (DOT) <mailto:jax4christ%40yahoo.com> com writes:

> ubj: Re: New to site (Anita)

> Date:11/29/2007 12:35:46 AM Eastern Standard Time

> From:jax4christyahoo (DOT) <mailto:jax4christ%40yahoo.com> com

> Reply-to:Stillsdisease@ <mailto:Stillsdisease%40yahoogroups.com>

yahoogroups.com

> To:Stillsdisease@ <mailto:Stillsdisease%40yahoogroups.com> yahoogroups.com

> Received from Internet:

>

>

>

> Anita, welcome to the group. Your posts are displaying fine. Sorry that

> Still's is effecting your life but you are

>

>

>

>

>

Thank you to jax4christ for responding. I just got back from taking my

daughter to school. What a struggle for me to get up in the morning, try to

look

presentable and take her to school because my unsupportive husband feels its

a

way to get me out of bed and be active instead of sleep all the time and be

lazy.

Today is an unusual day for me to be on the computer. My 21 year old son is

a med student and he doesn't have classes scheduled for Thursdays. So unless

he goes to school to study or has something to do like today he had to take

his car in for some kind of service because of some recall. Can you imagine?

He has a 2008 Avenger, Dodge and there's already a recall?

I'm havng a bad day. Very tired and in a lot of pain. I'm going to my

family doctor at 2 becaus the results from my lab tests now indicate my

cholesterol

and sugars are high! GREAT! On top of STILLS, DIVIRTICULITIS, ULCERATIV

COLITIS, ULCERS, ARTHRITIS IN MY SPINE AND EVERYWHERE ELSE. I don't know

whats

next. Then next Wednesday or Thursday I'm going to the rheumatologist for

the

synovisc shots in my knees. It's a series of 3 shots in each knee for 3

weeks.

The last time I had that done was the day before my insurance ran out and

believe it or not my knees were pretty good for about 6 months. Some pain

and

discomfort but not dibilitating.

I shouldn't even be on the pc now, but I enjoy learning more and talking

with

people who have at least Stills in common because family, particularly my

husband and son aren't supportive. They think I'm just lazy.

Again thanks to Jax?

Anita

[Guest guest]

Hi Diane:

Could you please send me your postal address and full name? I

will then get the brochures out to you ASAP! Thanks for asking!

" WE WILL WIN "

Love Ya'll

" NEVER FIGHT FAIR "

Bob & Carole

Dad & Mom

Panama City, FL 32404

Please visit the International Stills Disease Foundation Web Site at:

www.stillsdisease.org/. Please make Tax Deductible Donations to the all

volunteer, International Stills Disease Foundation Inc., 1123 S. Kimbrel Ave.

Panama City, FL 32404. Thanks!

[Guest guest]

Hi

Here is my address   thank you very much!!

DIANE DICKERSON

2709 WEST 89TH STREET 

EVERGREEN PARK, ILLINOIS 60805-1118

Hi Diane: 

Could you please send me your postal address and full name? I

will then get the brochures out to you ASAP! Thanks for asking!

" WE WILL WIN "

Love Ya'll

" NEVER FIGHT FAIR "

Bob & Carole

Dad & Mom

Panama City, FL 32404

Please visit the International Stills Disease Foundation Web Site at:

www.stillsdisease.org/. Please make Tax Deductible Donations to the all

volunteer, International Stills Disease Foundation Inc., 1123 S. Kimbrel Ave.

Panama City, FL 32404. Thanks!

[Guest guest]

Joan and Anita I totally understand how you feel. My parents are pretty

understanding, but since I have been having pain in my lower back I have to lay

down more. My came home from school and I had just gone back to bed to lie down

for awhile. She automatically assumed I had been there all day and started

chewing me out for not taking proper care of myself.

Then Friday Night I saw someone I know into Pizza Hut (his name is Roy) when I

was picking up Pizza's for supper. I was having a good day and I was able to

park literally right outside the door. I only had to walk 10-15 feet from my

car, into Pizza Hut to the chair right by the carry out counter. When I walk I

use a cane and my service dog. That and my back was hurting so much I don't know

if I could have tolerated sitting in my wheelchair again. Now I have to weigh

the risk of falling compared to the pain I have when I sit for any length of

time. Anyway getting back to my story. Roy said that I was looking healthy and

was glad to see me doing so well. If I continued to do so well he would have to

help me find something to do. I was a little perturbed at the implication that I

would just sit at home and not do anything when I am feeling good. Even if I

feel like crap if I have a presentation scheduled I try to honor my commitment

unless it is impossible for me to get out of

bed. After he made that comment I told him about the presentations I do, he

backed off.

There are days I feel like I should be doing more or I should be out working,

but I am learning what I can and cannot do. I have a really difficult time when

I am having a good day, but I have something planned the next day and need to

rest. Those are the times I go about nuts. Those are also the times I get on my

laptop and e-mail or do something like that where I can be " resting " , but also

getting something accomplished. Or I might also crochet. I do something that

uses very little energy, and that I can do while sitting or laying in bed

resting.

I wish I had advice for those of you who have family who are telling you that

you are lazy. My brother initially thought that way. But then he invited me to

stay at his place for a week. He soon saw that I do as much as I can. I do not

have the physical abilities that I had before. Now I honestly love to go visit

my brother, because his house is all on one level, and is easy for me to

accomplish things such as cooking, and cleaning. My parents house is nowhere

near being handicap accessible. Bob still doesn't have a ramp for his house, but

I only have 1 step to go up and my brother has an attached garage and lets me

park in the garage if I am having a bad day and can't walk very far.

TO everyone that is flaring right now, I hope that you find relief soon.

Take Care,

Fayette, OH

---------------------------------

Never miss a thing. Make Yahoo your homepage.