RE: Just sick from parents to ignorant to learn JRA

March 29, 2005

Actually there is new numbers out now that are worse than this it is down to

$23.00 a child and the Arthritis Foundation gets 7.5 million where Type 1

Diabetes get 150 million a year there are as of now 300,000 children with JA

and 206,000 people under the age of 20 with Type 1 Diabetes i know that

Diabetes is an important disease but why does one receive more than the other??

in

2003 9,500 people died from Arthritis NO ONE should die from arthritis. I

could go on and on I am a parent that has a child with arthritis but i am also

a

college student and just did a 9 page research paper...i do not know how

many of you went to D.C.but after going and lobbing for the bil H.R. 583 i have

a complete different outlook on things...

The government spends less then $30 a year on your child to try and treat

your childs arthritis for control or a cure.Comes out to about 6 million for

JA

research compaired to 60 million in federal money for type 1 diabetis.Mayby

your child doesn't have to take handfulls of pills several times a day or

take

shots every week but for the ones realy needing support because no one else

understands it's a major part of life.It's our life line.

We aren't WHINEY we just have the rest of the kids that DO NOT fit in that

nice,little package of kids that fall under the uncomplicated umbrella of

easy

to treat JRA.

I double dog dare you to just try it and I guarantee you will be begging for

help.

Us moms and dads of tough ones only wish we could be so lucky and you easy

ones would not want to even come close to experiencing what we do.

Sorry if i sounded mean but I meant every single word.Try imagining a child

screaming in pain day and night for weeks on end.

Becki and 6 systemic

[Non-text portions of this message have been removed]

March 29, 2005

Yes we were all there....

March 29, 2005

I don't see how JRA not being the worst disease makes it any better. I have

never had the thought well kids die from cancer, AID'S, cystic fibrosis, and

then some so really that makes my pain go away. There are things worse then

JRA, we are all aware of that, its the reason I started volunteering with

kids with cancer because I wanted to make their battle a little better by

providing some fun, but despite all that it hasn't made my fight any easier.

I'm

still lost in the medicine world trying to find the right combination of

medicines that will make me lead a normal life that doesn't include pain and

monthly hospital trips and despite all that I still do my best to lead a life

with a disease.. I have a job, I go to school, I hang out with friends, and I

volunteer when I can. JRA sucks no matter how you look at it, yes it might

not be the worst thing but it still sucks, having to live a life in pain is not

fair, but it is so many kids lives. My disease was once controled with just

naproxen, but as I got older the disease progressed, its just the way it

goes sometimes. But even during the time of naproxen it was still sucky to have

to take meds all the time and when I was unable to run and play wiht my

friends it was even worse. I don't think its fair for someone who has never had

to

watch their kid in the hospital, or give them a shot, or watch them puke

from the chemo, or had to worry what the side effects from these new drugs are

going to be long term has a right to say anything. We are all in this fight

together from those on no meds, to those on naproxen, to the ones who have to

take meds that just very well may end up with something worse because of

these meds. We are all here in this group to learn from one another and raise

awareness. We should let this go and talk about what is important. JRA and

the kids and the adult survivors it affects. If your not interested in

learning about the worst case scenarios and celebrating the amazing out comes

of

those lucky enough to be in remission or just on naprox and if you dont want to

learn about other treatment options and the meds these kids are on, and if

you dont want to be that shoulder to cry one when a parent has to watch their

child suffer then you dont belong here. Having a kid with JRA may not be the

worst thing possible, but when your watching your child suffer it is.

March 29, 2005

Logan Breedlove..i may not want to tell you im sure he was wild...him and

from Hawaii became really good friends..

March 29, 2005

I don't pipe in often because my daughter has been blessed with good fortune

in her bouts with jra and iritis. I do still check the posts to keep up to

date on new developments in research and medications and to hear how all of

your kids are doing. I occasionally share my daughter's experiences, mostly

for the parents of newly diagnosed children with a similar disease onset to my

daughter's, because it's my wish that 's experiences will provide hope

and relief for those feeling the terror of a new diagnosis. I remember that

feeling well. This group was a godsend to me in the early days when I knew

nothing, and knew no one who could relate to what we were experiencing. The

posts are largely from parents of children experiencing more serious problems,

because [not surprisingly] those are the parents who need more support [and

who have more experiences to share]. I've never viewed their posts as

" whining. " I did my share of " whining " during certain periods when things

weren't

going so well. That -- I thought -- was the purpose for this group -- a

place to give and receive support and to share information about the disease.

The topic of this group is jra, hence the discussion's focus on the disease. I

know we've all got busy lives and don't sit around 24/7 thinking about this

disease, but it's nice to have one place to go if we do need to hash a

particular issue out. I think this is the last place anyone should have to

apologize for talking about, or being upset about, their child's illness.

Whether

our child has one swollen knee or is swollen all over and bloated and cranky

from medications, we all have the right to feel sad about it and to seek

information about how to make it better. I believe the majority of the people

on

this list feel genuine compassion for all of the children affected by this

disease, are saddened by the challenges many have to endure, and are thrilled

to hear of good outcomes. I just wanted to let you all know that I think

you're all great and that this group is great!

Diane (, 5, pauci, iritis, in remission)

March 29, 2005

,

Did you have your child with you at the Summit?

Liz

Re: Just sick from parents to ignorant to learn JRA

Actually there is new numbers out now that are worse than this it is down

to

$23.00 a child and the Arthritis Foundation gets 7.5 million where Type 1

Diabetes get 150 million a year there are as of now 300,000 children with JA

and 206,000 people under the age of 20 with Type 1 Diabetes i know that

Diabetes is an important disease but why does one receive more than the

other?? in

2003 9,500 people died from Arthritis NO ONE should die from arthritis. I

could go on and on I am a parent that has a child with arthritis but i am

also a

college student and just did a 9 page research paper...i do not know how

many of you went to D.C.but after going and lobbing for the bil H.R. 583 i

have

a complete different outlook on things...

The government spends less then $30 a year on your child to try and treat

your childs arthritis for control or a cure.Comes out to about 6 million for

JA

research compaired to 60 million in federal money for type 1 diabetis.Mayby

your child doesn't have to take handfulls of pills several times a day or

take

shots every week but for the ones realy needing support because no one else

understands it's a major part of life.It's our life line.

We aren't WHINEY we just have the rest of the kids that DO NOT fit in that

nice,little package of kids that fall under the uncomplicated umbrella of

easy

to treat JRA.

I double dog dare you to just try it and I guarantee you will be begging

for

help.

Us moms and dads of tough ones only wish we could be so lucky and you easy

ones would not want to even come close to experiencing what we do.

Sorry if i sounded mean but I meant every single word.Try imagining a child

screaming in pain day and night for weeks on end.

Becki and 6 systemic

[Non-text portions of this message have been removed]

March 29, 2005

Which child is yours? I was with the kids the whole time...

Re: Just sick from parents to ignorant to learn JRA

Yes we were all there....

March 29, 2005

Wonderfully said.

Re: Just sick from parents to ignorant to learn JRA

>

> I don't see how JRA not being the worst disease makes it any

> better. I have

> never had the thought well kids die from cancer, AID'S, cystic

> fibrosis, and

> then some so really that makes my pain go away. There are things

> worse then

> JRA, we are all aware of that, its the reason I started

> volunteering with

> kids with cancer because I wanted to make their battle a little

> better by

> providing some fun, but despite all that it hasn't made my fight

> any easier. I'm

> still lost in the medicine world trying to find the right

> combination of

> medicines that will make me lead a normal life that doesn't

> include pain and

> monthly hospital trips and despite all that I still do my best to

> lead a life

> with a disease.. I have a job, I go to school, I hang out with

> friends, and I

> volunteer when I can. JRA sucks no matter how you look at it,

> yes it might

> not be the worst thing but it still sucks, having to live a life

> in pain is not

> fair, but it is so many kids lives. My disease was once

> controled with just

> naproxen, but as I got older the disease progressed, its just the

> way it

> goes sometimes. But even during the time of naproxen it was still

> sucky to have

> to take meds all the time and when I was unable to run and play

> wiht my

> friends it was even worse. I don't think its fair for someone who

> has never had to

> watch their kid in the hospital, or give them a shot, or watch

> them puke

> from the chemo, or had to worry what the side effects from these

> new drugs are

> going to be long term has a right to say anything. We are all in

> this fight

> together from those on no meds, to those on naproxen, to the ones

> who have to

> take meds that just very well may end up with something worse

> because of

> these meds. We are all here in this group to learn from one

> another and raise

> awareness. We should let this go and talk about what is

> important. JRA and

> the kids and the adult survivors it affects. If your not

> interested in

> learning about the worst case scenarios and celebrating the

> amazing out comes of

> those lucky enough to be in remission or just on naprox and if

> you dont want to

> learn about other treatment options and the meds these kids are

> on, and if

> you dont want to be that shoulder to cry one when a parent has to

> watch their

> child suffer then you dont belong here. Having a kid with JRA

> may not be the

> worst thing possible, but when your watching your child suffer it is.

>

March 29, 2005

,

That was very eloquently and beautifully said.. After reading that I am sitting

here crying.. You put it perfectly.. You are a awesomely strong woman and I hope

has the strength that you do when she gets older..

hugs,

Emilie

Re: Just sick from parents to ignorant to learn JRA

I don't see how JRA not being the worst disease makes it any better. I have

never had the thought well kids die from cancer, AID'S, cystic fibrosis, and

then some so really that makes my pain go away. There are things worse then

JRA, we are all aware of that, its the reason I started volunteering with

kids with cancer because I wanted to make their battle a little better by

providing some fun, but despite all that it hasn't made my fight any easier.

I'm

still lost in the medicine world trying to find the right combination of

medicines that will make me lead a normal life that doesn't include pain and

monthly hospital trips and despite all that I still do my best to lead a life

with a disease.. I have a job, I go to school, I hang out with friends, and I

volunteer when I can. JRA sucks no matter how you look at it, yes it might

not be the worst thing but it still sucks, having to live a life in pain is

not

fair, but it is so many kids lives. My disease was once controled with just

naproxen, but as I got older the disease progressed, its just the way it

goes sometimes. But even during the time of naproxen it was still sucky to

have

to take meds all the time and when I was unable to run and play wiht my

friends it was even worse. I don't think its fair for someone who has never

had to

watch their kid in the hospital, or give them a shot, or watch them puke

from the chemo, or had to worry what the side effects from these new drugs

are

going to be long term has a right to say anything. We are all in this fight

together from those on no meds, to those on naproxen, to the ones who have to

take meds that just very well may end up with something worse because of

these meds. We are all here in this group to learn from one another and

raise

awareness. We should let this go and talk about what is important. JRA and

the kids and the adult survivors it affects. If your not interested in

learning about the worst case scenarios and celebrating the amazing out comes

of

those lucky enough to be in remission or just on naprox and if you dont want

to

learn about other treatment options and the meds these kids are on, and if

you dont want to be that shoulder to cry one when a parent has to watch their

child suffer then you dont belong here. Having a kid with JRA may not be the

worst thing possible, but when your watching your child suffer it is.

March 29, 2005

I couldn't agree more! You are a wonderful inspiration and I hope Madison is as

strong as you are!

________________________________

From: MG9393@... [mailto:MG9393@...]

Sent: Tue 3/29/2005 2:38 PM

Subject: Re: Just sick from parents to ignorant to learn JRA

Wonderfully said.

Re: Just sick from parents to ignorant to learn JRA

>

> I don't see how JRA not being the worst disease makes it any

> better. I have

> never had the thought well kids die from cancer, AID'S, cystic

> fibrosis, and

> then some so really that makes my pain go away. There are things

> worse then

> JRA, we are all aware of that, its the reason I started

> volunteering with

> kids with cancer because I wanted to make their battle a little

> better by

> providing some fun, but despite all that it hasn't made my fight

> any easier. I'm

> still lost in the medicine world trying to find the right

> combination of

> medicines that will make me lead a normal life that doesn't

> include pain and

> monthly hospital trips and despite all that I still do my best to

> lead a life

> with a disease.. I have a job, I go to school, I hang out with

> friends, and I

> volunteer when I can. JRA sucks no matter how you look at it,

> yes it might

> not be the worst thing but it still sucks, having to live a life

> in pain is not

> fair, but it is so many kids lives. My disease was once

> controled with just

> naproxen, but as I got older the disease progressed, its just the

> way it

> goes sometimes. But even during the time of naproxen it was still

> sucky to have

> to take meds all the time and when I was unable to run and play

> wiht my

> friends it was even worse. I don't think its fair for someone who

> has never had to

> watch their kid in the hospital, or give them a shot, or watch

> them puke

> from the chemo, or had to worry what the side effects from these

> new drugs are

> going to be long term has a right to say anything. We are all in

> this fight

> together from those on no meds, to those on naproxen, to the ones

> who have to

> take meds that just very well may end up with something worse

> because of

> these meds. We are all here in this group to learn from one

> another and raise

> awareness. We should let this go and talk about what is

> important. JRA and

> the kids and the adult survivors it affects. If your not

> interested in

> learning about the worst case scenarios and celebrating the

> amazing out comes of

> those lucky enough to be in remission or just on naprox and if

> you dont want to

> learn about other treatment options and the meds these kids are

> on, and if

> you dont want to be that shoulder to cry one when a parent has to

> watch their

> child suffer then you dont belong here. Having a kid with JRA

> may not be the

> worst thing possible, but when your watching your child suffer it is.

>

March 29, 2005

I respectfully disagree. And I have had my kid in the hospital, had them puke

from meds and all the horrible things that you have mentioned but I have a

sister that has had to rush her child to the emergency room while he has gone

into a diabetic shock and pray against all odds that they keep him alive. I'd

still rather be dealing with this disease than the unknown.. Can any of you

honestly say youd rather have a different disease , cancer, lupus, diabitec and

on and on.... was tested for things I couldn't even imagine and we

thanked GOD that she had JRA. And I do know about the disease....Because I

don't believe the same way you believe about it doesn't make me ignorant, just

as it doesn't make you ignorant not to agree with my thinking.

HARRY SKIDMORE <h.skidmore@...> wrote:,

That was very eloquently and beautifully said.. After reading that I am sitting

here crying.. You put it perfectly.. You are a awesomely strong woman and I hope

has the strength that you do when she gets older..

hugs,

Emilie

Re: Just sick from parents to ignorant to learn JRA

I don't see how JRA not being the worst disease makes it any better. I have

never had the thought well kids die from cancer, AID'S, cystic fibrosis, and

then some so really that makes my pain go away. There are things worse then

JRA, we are all aware of that, its the reason I started volunteering with

kids with cancer because I wanted to make their battle a little better by

providing some fun, but despite all that it hasn't made my fight any easier.

I'm

still lost in the medicine world trying to find the right combination of

medicines that will make me lead a normal life that doesn't include pain and

monthly hospital trips and despite all that I still do my best to lead a life

with a disease.. I have a job, I go to school, I hang out with friends, and I

volunteer when I can. JRA sucks no matter how you look at it, yes it might

not be the worst thing but it still sucks, having to live a life in pain is

not

fair, but it is so many kids lives. My disease was once controled with just

naproxen, but as I got older the disease progressed, its just the way it

goes sometimes. But even during the time of naproxen it was still sucky to

have

to take meds all the time and when I was unable to run and play wiht my

friends it was even worse. I don't think its fair for someone who has never

had to

watch their kid in the hospital, or give them a shot, or watch them puke

from the chemo, or had to worry what the side effects from these new drugs

are

going to be long term has a right to say anything. We are all in this fight

together from those on no meds, to those on naproxen, to the ones who have to

take meds that just very well may end up with something worse because of

these meds. We are all here in this group to learn from one another and

raise

awareness. We should let this go and talk about what is important. JRA and

the kids and the adult survivors it affects. If your not interested in

learning about the worst case scenarios and celebrating the amazing out comes

of

those lucky enough to be in remission or just on naprox and if you dont want

to

learn about other treatment options and the meds these kids are on, and if

you dont want to be that shoulder to cry one when a parent has to watch their

child suffer then you dont belong here. Having a kid with JRA may not be the

worst thing possible, but when your watching your child suffer it is.

March 29, 2005

Exactly, . I was trying to avoid any more comments on the whole

thing, as things get twisted and read wrong, but you are right. Thanks

for saying all of this. Michele

Re: Just sick from parents to ignorant to learn JRA

I don't see how JRA not being the worst disease makes it any better. I

have

never had the thought well kids die from cancer, AID'S, cystic fibrosis,

and

then some so really that makes my pain go away. There are things worse

then

JRA, we are all aware of that, its the reason I started volunteering

with

kids with cancer because I wanted to make their battle a little better

by

providing some fun, but despite all that it hasn't made my fight any

easier. I'm

still lost in the medicine world trying to find the right combination

of

medicines that will make me lead a normal life that doesn't include

pain and

monthly hospital trips and despite all that I still do my best to lead

a life

with a disease.. I have a job, I go to school, I hang out with friends,

and I

volunteer when I can. JRA sucks no matter how you look at it, yes it

might

not be the worst thing but it still sucks, having to live a life in

pain is not

fair, but it is so many kids lives. My disease was once controled with

just

naproxen, but as I got older the disease progressed, its just the way

it

goes sometimes. But even during the time of naproxen it was still sucky

to have

to take meds all the time and when I was unable to run and play wiht my

friends it was even worse. I don't think its fair for someone who has

never had to

watch their kid in the hospital, or give them a shot, or watch them

puke

from the chemo, or had to worry what the side effects from these new

drugs are

going to be long term has a right to say anything. We are all in this

fight

together from those on no meds, to those on naproxen, to the ones who

have to

take meds that just very well may end up with something worse because

of

these meds. We are all here in this group to learn from one another

and raise

awareness. We should let this go and talk about what is important.

JRA and

the kids and the adult survivors it affects. If your not interested in

learning about the worst case scenarios and celebrating the amazing out

comes of

those lucky enough to be in remission or just on naprox and if you dont

want to

learn about other treatment options and the meds these kids are on, and

if

you dont want to be that shoulder to cry one when a parent has to watch

their

child suffer then you dont belong here. Having a kid with JRA may not

be the

worst thing possible, but when your watching your child suffer it is.

March 29, 2005

He was wild at times, but not bad. Just all boy! And when asked to settle

down he did so without any arguing, so I have no complaints at all. I hope

to see him again!

Liz

Re: Just sick from parents to ignorant to learn JRA

Logan Breedlove..i may not want to tell you im sure he was wild...him and

from Hawaii became really good friends..

March 29, 2005

I have no idea what that feels like to have to pray for your child because I

dont have any children. But I have seen the look on my moms face as I was

rushed to the hospital with a heart rate over 200 with doctors telling her my

heart my stop or that i might have a heart attack because my heart cant

properly regulate its own beat.. my battle does not just include JRA

unfortunately.. and if you were to tell my mom her that JRA isnt the worse she

would

agree.. but would it change the fact she has had to sit with me in the hospital

numerous times or go through numerous tests or that in the process of learning

about JRA i have been dxd with some horrible things that some would say are

worse then JRA.. its not a competition if anyone is competing it seems to be

you.. yes you have seen some things worse then jra.. yes you have 8 kids and

a lot of experience.. so you of all people should then be a leader... instead

of someone who wants to tell everyone else that they aren't doing it right..

March 29, 2005

I think the notion the idea that we feel blessed over one disease

versus another is as ludicrous as thinking that a parent would be

advocating for the sickest child award.

Today, I stopped and looked at all of our beautiful children on the

photo page. We are good mothers, fathers, grandparents, JRA survivors

and we have absolutely beautiful kids. Our kids are growing up to be

compassionate, thoughtful, respectful, and ambitious.

One of my proudest moments as a mom was when I told my son about

little Robbie and how he was going to have to sit out his baseball

season due to the fractures in his back. When I saw bringing

some of his most special baseball books, winning game ball etc..down

the stairs in a box which he asked me to mail to Robbie, I thought

this is what I want my children to learn. To love others and to

extend a helping hand or kind deed when needed.

We do have so much to be thankful for. Beautiful kids, supportive

family and a support group to help us along this journey!-

(Aundrea 9 systemic, 13)

- In , " Tepper, Michele " <MTepper@f...>

wrote:

> Exactly, . I was trying to avoid any more comments on the whole

> thing, as things get twisted and read wrong, but you are right.

Thanks

> for saying all of this. Michele

>

> Re: Just sick from parents to ignorant to learn JRA

>

> I don't see how JRA not being the worst disease makes it any better.

I

> have

> never had the thought well kids die from cancer, AID'S, cystic

fibrosis,

> and

> then some so really that makes my pain go away. There are things

worse

> then

> JRA, we are all aware of that, its the reason I started volunteering

> with

> kids with cancer because I wanted to make their battle a little

better

> by

> providing some fun, but despite all that it hasn't made my fight any

> easier. I'm

> still lost in the medicine world trying to find the right

combination

> of

> medicines that will make me lead a normal life that doesn't

include

> pain and

> monthly hospital trips and despite all that I still do my best to

lead

> a life

> with a disease.. I have a job, I go to school, I hang out with

friends,

> and I

> volunteer when I can. JRA sucks no matter how you look at it, yes

it

> might

> not be the worst thing but it still sucks, having to live a life in

> pain is not

> fair, but it is so many kids lives. My disease was once controled

with

> just

> naproxen, but as I got older the disease progressed, its just the

way

> it

> goes sometimes. But even during the time of naproxen it was still

sucky

> to have

> to take meds all the time and when I was unable to run and play

wiht my

>

> friends it was even worse. I don't think its fair for someone who

has

> never had to

> watch their kid in the hospital, or give them a shot, or watch them

> puke

> from the chemo, or had to worry what the side effects from these

new

> drugs are

> going to be long term has a right to say anything. We are all in

this

> fight

> together from those on no meds, to those on naproxen, to the ones

who

> have to

> take meds that just very well may end up with something worse

because

> of

> these meds. We are all here in this group to learn from one

another

> and raise

> awareness. We should let this go and talk about what is important.

> JRA and

> the kids and the adult survivors it affects. If your not

interested in

>

> learning about the worst case scenarios and celebrating the amazing

out

> comes of

> those lucky enough to be in remission or just on naprox and if you

dont

> want to

> learn about other treatment options and the meds these kids are on,

and

> if

> you dont want to be that shoulder to cry one when a parent has to

watch

> their

> child suffer then you dont belong here. Having a kid with JRA may

not

> be the

> worst thing possible, but when your watching your child suffer it

is.

>

March 29, 2005

-Amen Sister!!!!

Love ya

Helen

-- In , " sonia1md " <sonia1md@y...> wrote:

>

> I think the notion the idea that we feel blessed over one disease

> versus another is as ludicrous as thinking that a parent would be

> advocating for the sickest child award.

>

> Today, I stopped and looked at all of our beautiful children on

the

> photo page. We are good mothers, fathers, grandparents, JRA

survivors

> and we have absolutely beautiful kids. Our kids are growing up to

be

> compassionate, thoughtful, respectful, and ambitious.

>

> One of my proudest moments as a mom was when I told my son about

> little Robbie and how he was going to have to sit out his baseball

> season due to the fractures in his back. When I saw bringing

> some of his most special baseball books, winning game ball

etc..down

> the stairs in a box which he asked me to mail to Robbie, I thought

> this is what I want my children to learn. To love others and to

> extend a helping hand or kind deed when needed.

>

> We do have so much to be thankful for. Beautiful kids, supportive

> family and a support group to help us along this journey!-

>

> (Aundrea 9 systemic, 13)

>

> - In , " Tepper, Michele " <MTepper@f...>

> wrote:

> > Exactly, . I was trying to avoid any more comments on the

whole

> > thing, as things get twisted and read wrong, but you are right.

> Thanks

> > for saying all of this. Michele

> >

> > Re: Just sick from parents to ignorant to learn

JRA

> >

> > I don't see how JRA not being the worst disease makes it any

better.

> I

> > have

> > never had the thought well kids die from cancer, AID'S, cystic

> fibrosis,

> > and

> > then some so really that makes my pain go away. There are

things

> worse

> > then

> > JRA, we are all aware of that, its the reason I started

volunteering

> > with

> > kids with cancer because I wanted to make their battle a little

> better

> > by

> > providing some fun, but despite all that it hasn't made my fight

any

> > easier. I'm

> > still lost in the medicine world trying to find the right

> combination

> > of

> > medicines that will make me lead a normal life that doesn't

> include

> > pain and

> > monthly hospital trips and despite all that I still do my best

to

> lead

> > a life

> > with a disease.. I have a job, I go to school, I hang out with

> friends,

> > and I

> > volunteer when I can. JRA sucks no matter how you look at it,

yes

> it

> > might

> > not be the worst thing but it still sucks, having to live a

life in

> > pain is not

> > fair, but it is so many kids lives. My disease was once

controled

> with

> > just

> > naproxen, but as I got older the disease progressed, its just

the

> way

> > it

> > goes sometimes. But even during the time of naproxen it was

still

> sucky

> > to have

> > to take meds all the time and when I was unable to run and play

> wiht my

> >

> > friends it was even worse. I don't think its fair for someone

who

> has

> > never had to

> > watch their kid in the hospital, or give them a shot, or watch

them

> > puke

> > from the chemo, or had to worry what the side effects from

these

> new

> > drugs are

> > going to be long term has a right to say anything. We are all

in

> this

> > fight

> > together from those on no meds, to those on naproxen, to the

ones

> who

> > have to

> > take meds that just very well may end up with something worse

> because

> > of

> > these meds. We are all here in this group to learn from one

> another

> > and raise

> > awareness. We should let this go and talk about what is

important.

> > JRA and

> > the kids and the adult survivors it affects. If your not

> interested in

> >

> > learning about the worst case scenarios and celebrating the

amazing

> out

> > comes of

> > those lucky enough to be in remission or just on naprox and if

you

> dont

> > want to

> > learn about other treatment options and the meds these kids are

on,

> and

> > if

> > you dont want to be that shoulder to cry one when a parent has

to

> watch

> > their

> > child suffer then you dont belong here. Having a kid with JRA

may

> not

> > be the

> > worst thing possible, but when your watching your child suffer

it

> is.

> >

March 29, 2005

You make me laugh! I started the day feeling

frustrated over the recent exchanges on the board

and then I realized that this is a strong group.

We stick together, support each other and defend each

other! I was very happy about that!

One must wonder if their thinking is a little off when

99% of the group is responding in similar tone...I would

think that if I was the 1% I would wonder if its perhaps me

and not everyone else that has a problem.

I hope your feeling better soon Helen. I remember all to well

how miserable I was with that sinus infection. Let us know

what the doc has to say.

Love ya,

(Aundrea 9 systemic)

---

In , " hburger64 " <hburger64@h...> wrote:

>

> -Amen Sister!!!!

>

> Love ya

> Helen

>

> -- In , " sonia1md " <sonia1md@y...> wrote:

> >

> > I think the notion the idea that we feel blessed over one

disease

> > versus another is as ludicrous as thinking that a parent would

be

> > advocating for the sickest child award.

> >

> > Today, I stopped and looked at all of our beautiful children on

> the

> > photo page. We are good mothers, fathers, grandparents, JRA

> survivors

> > and we have absolutely beautiful kids. Our kids are growing up

to

> be

> > compassionate, thoughtful, respectful, and ambitious.

> >

> > One of my proudest moments as a mom was when I told my son about

> > little Robbie and how he was going to have to sit out his

baseball

> > season due to the fractures in his back. When I saw

bringing

> > some of his most special baseball books, winning game ball

> etc..down

> > the stairs in a box which he asked me to mail to Robbie, I

thought

> > this is what I want my children to learn. To love others and to

> > extend a helping hand or kind deed when needed.

> >

> > We do have so much to be thankful for. Beautiful kids,

supportive

> > family and a support group to help us along this journey!-

> >

> > (Aundrea 9 systemic, 13)

> >

> > - In , " Tepper, Michele " <MTepper@f...>

> > wrote:

> > > Exactly, . I was trying to avoid any more comments on the

> whole

> > > thing, as things get twisted and read wrong, but you are

right.

> > Thanks

> > > for saying all of this. Michele

> > >

> > > Re: Just sick from parents to ignorant to learn

> JRA

> > >

> > > I don't see how JRA not being the worst disease makes it any

> better.

> > I

> > > have

> > > never had the thought well kids die from cancer, AID'S, cystic

> > fibrosis,

> > > and

> > > then some so really that makes my pain go away. There are

> things

> > worse

> > > then

> > > JRA, we are all aware of that, its the reason I started

> volunteering

> > > with

> > > kids with cancer because I wanted to make their battle a

little

> > better

> > > by

> > > providing some fun, but despite all that it hasn't made my

fight

> any

> > > easier. I'm

> > > still lost in the medicine world trying to find the right

> > combination

> > > of

> > > medicines that will make me lead a normal life that doesn't

> > include

> > > pain and

> > > monthly hospital trips and despite all that I still do my

best

> to

> > lead

> > > a life

> > > with a disease.. I have a job, I go to school, I hang out

with

> > friends,

> > > and I

> > > volunteer when I can. JRA sucks no matter how you look at

it,

> yes

> > it

> > > might

> > > not be the worst thing but it still sucks, having to live a

> life in

> > > pain is not

> > > fair, but it is so many kids lives. My disease was once

> controled

> > with

> > > just

> > > naproxen, but as I got older the disease progressed, its just

> the

> > way

> > > it

> > > goes sometimes. But even during the time of naproxen it was

> still

> > sucky

> > > to have

> > > to take meds all the time and when I was unable to run and

play

> > wiht my

> > >

> > > friends it was even worse. I don't think its fair for someone

> who

> > has

> > > never had to

> > > watch their kid in the hospital, or give them a shot, or

watch

> them

> > > puke

> > > from the chemo, or had to worry what the side effects from

> these

> > new

> > > drugs are

> > > going to be long term has a right to say anything. We are

all

> in

> > this

> > > fight

> > > together from those on no meds, to those on naproxen, to the

> ones

> > who

> > > have to

> > > take meds that just very well may end up with something worse

> > because

> > > of

> > > these meds. We are all here in this group to learn from one

> > another

> > > and raise

> > > awareness. We should let this go and talk about what is

> important.

> > > JRA and

> > > the kids and the adult survivors it affects. If your not

> > interested in

> > >

> > > learning about the worst case scenarios and celebrating the

> amazing

> > out

> > > comes of

> > > those lucky enough to be in remission or just on naprox and

if

> you

> > dont

> > > want to

> > > learn about other treatment options and the meds these kids

are

> on,

> > and

> > > if

> > > you dont want to be that shoulder to cry one when a parent

has

> to

> > watch

> > > their

> > > child suffer then you dont belong here. Having a kid with

JRA

> may

> > not

> > > be the

> > > worst thing possible, but when your watching your child

suffer

> it

> > is.

> > >

March 29, 2005

I have actually tried to stay out of this entire mess. This comment I have

to respond to though. My daughter did relatively well on just an NSAID for a

long time and I also doubted if my child had a correct diagnosis, based on

what I heard on this list. It wasn't because anyone said anything to make me

feel that way but more from hearing about other's experiences. She now, though,

has had Plaquenil added. Now one experience I did have on this list was from

a comment made. I was once attacked by a beloved list member for my daughter

being on an antidepressant. Though I did receive support from others, that

attack has stood out in my mind. I do know that it was absolutely necessary for

her, but it still made me feel like a bad parent. I really hope this whole

mess will be put to rest soon. Kim

In a message dated 3/29/2005 8:14:07 PM Central Standard Time,

alesha1003@... writes:

But I for one appreciated the article that Georgina posted about the family

in RURAL OREGON. Because until she did all I ever heard was the negative,

which made me feel like that my child didn't have a proper diagnosis.

March 29, 2005

--

Hey Diane,

It was nice to hear from you today. I have been thinking

about you. I spoke with you at length this past fall

regarding our potential move to arizona. I still

appreciate all of your emails and insight that you

were able to provide me with regarding our relocation

questions.

We are still planning on moving to Arizona, hopefully this

July. We plan to live in Anthem which I believe

is about 30 miles north of Phoenix.

I will be in touch as things get closer and perhaps

you can give me some reminders about recommendations

for rheumatologists, opthamologists etc...

Its good to hear that is doing well!

(Aundrea 9 systemic)

- In , dbornscheu@a... wrote:

> I don't pipe in often because my daughter has been blessed with

good fortune

> in her bouts with jra and iritis. I do still check the posts to

keep up to

> date on new developments in research and medications and to hear

how all of

> your kids are doing. I occasionally share my daughter's

experiences, mostly

> for the parents of newly diagnosed children with a similar

disease onset to my

> daughter's, because it's my wish that 's experiences will

provide hope

> and relief for those feeling the terror of a new diagnosis. I

remember that

> feeling well. This group was a godsend to me in the early days

when I knew

> nothing, and knew no one who could relate to what we were

experiencing. The

> posts are largely from parents of children experiencing more

serious problems,

> because [not surprisingly] those are the parents who need more

support [and

> who have more experiences to share]. I've never viewed their

posts as

> " whining. " I did my share of " whining " during certain periods

when things weren't

> going so well. That -- I thought -- was the purpose for this

group -- a

> place to give and receive support and to share information about

the disease.

> The topic of this group is jra, hence the discussion's focus on

the disease. I

> know we've all got busy lives and don't sit around 24/7 thinking

about this

> disease, but it's nice to have one place to go if we do need to

hash a

> particular issue out. I think this is the last place anyone

should have to

> apologize for talking about, or being upset about, their child's

illness. Whether

> our child has one swollen knee or is swollen all over and bloated

and cranky

> from medications, we all have the right to feel sad about it and

to seek

> information about how to make it better. I believe the majority

of the people on

> this list feel genuine compassion for all of the children

affected by this

> disease, are saddened by the challenges many have to endure, and

are thrilled

> to hear of good outcomes. I just wanted to let you all know that

I think

> you're all great and that this group is great!

>

> Diane (, 5, pauci, iritis, in remission)

>

March 29, 2005

I must say i feel the same way this has gone to far. I am a new member and

was going to stay out of this Alesha told me it would be best so i didn't make

enemies but I want people to know that Alesha is a good person she is helping

with the walk in my area and is doing a great job at getting donations. Her

daughter is beautiful as well as her other children she is very

concerned about and her health, we have both seen the same

Ped. Rheumatoloigst and he is one of the best around. She really is a good

person i just think things got out of control. I hope no one hates me for

standing up for her as a person, i do not know what the original post said, but

she really is a nice kind hearted person...i am sure i will have more than one

person tell me that i am crazy..

-new member

March 29, 2005

,

You give me such hope for my daughter. You are so strong and wise way beyond

your years. Before Gabi was dx, she was so shy and didn't express her feelings.

Since her dx, for the first time, she has a voice and she doesn't mind

expressing her opinions and feelings. She has gotten so much stronger

emotionally. I hope she continues to be strong. Anyway, thank you for always

being a fresh voice of reason! Your words are right on!

bncknwurnumber@... wrote: