RE: Just sick from parents to ignorant to learn JRA

[Guest guest]

You should never feel bad about giving your child the medicine he or she

needs. Antidepressants arent a bad thing. I'm sorry someone made that

comment.

[Guest guest]

, thank you so much for this comment. I can't tell you how much I

appreciate you saying that. Kim

In a message dated 3/29/2005 11:27:14 PM Central Standard Time,

bncknwurnumber@... writes:

You should never feel bad about giving your child the medicine he or she

needs. Antidepressants arent a bad thing. I'm sorry someone made that

comment.

[Guest guest]

i quote from another group member.....

" 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. "

very well said.... i know that is why i come here... i do not come

here to push an opnion that is hurtful or offencive... i come here to

celebrate the kids that are blessed with a remition and to lend a

shoulder for that parent who needs it... mostly the USEFUL opnions

and information is what i value most. back to my question not

answered, why do you come here? for what purpose? to offend parents

who are struggling and just need a shoulder? to them this is the

worst thing imagineable that could happen... i think it is great if

you do not take it so personal and are able to have a different

prospective, but having the " just JRA " attitude is not what is wanted

here. it is also not needed. now that is just my opnion.

> > > > > 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.

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

[Guest guest]

First of all I was not the one that said that people where competing to see who

has the sickest child. That comment didn't come from me, it came from another

parent who received so much hate mail out of the room that she has quit the

room. What I said was I felt the room was whiney. That was my comment. I am

also not the one that said that the people in " rural oregon " probably didn't

know what they where talking about when they said that they treated their child

with NAPROXEN. For some reason I am taking the fall for what everyone else has

said. I have no intentions of trying to tell everyone else what to do with

their kids. 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.

Through this attack on my character, my sanity and my child rearing I have at

least found out that there are other kids that are

maintain through just a few meds and that should not have been diminished by

someone who's kids isn't that lucky.

bncknwurnumber@... wrote: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..

[Guest guest]

- I appreciate you standing up for her. I don't think that it is a

matter of whether or not she is a good person. I have no doubt she is an

amazing person. I have no problem with her opinion. I may not agree with

everything, but that is life. I do agree with the fact that a high

percentage of our children will outgrow this disease. And while we don't

always hear about the success stories here they are prevalent and

widespread. We are all aware of that. But, sometime when you are soo

embedded in your own personal battle, it is tough to remember that for many

there will be a light at the end of the tunnel. I don't think this way of

thinking is specific to JRA only, it could be applied to many situations in

each of our own personal lives. However, I just have a problem with her tone

and animosity. I just don't appreciate being sworn at or being belittled

myself. Like many here, I just hope to be able to move on and once again

focus on the good and the bad with our kids.

Alia and Caroline, age 3, poly and uveitis

Re: Just sick from parents to ignorant to learn JRA

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

[Guest guest]

Alia,

After I responded I realized I got into the middle of something. There

are good things that do go on with our kids. In fact I think my

daughter is stronger than any person I know...she battles every day with

very little complaining. I am sorry because I didn't realize it until

later that this women had drop the F bomb ( which is horribly

inappropriate) and truly un-necessary! There is absolutely no reason

for that at all!

I didn't read all the messages, and just jumped in the middle of a

message...really I wasn't standing up for anyone...I was just tooting my

daughters horn! And I am her mom, and I feel entitled to do that.

Actually I could write an entire novel on each of my children's

downfalls and accomplishments. That is the beauty of being a mom. So

for now...I am not responding to much....just sitting back.

I don't suppose you have heard from your bracelet people? Are they

taking you for a ride? I hope not. Last night we had our hockey night

final banquet. Allie won the " most Determined " award...for her

fighting thru the pain and making a difference on the ice. Yes, I got a

tear. And my other daughter ...she got the Kwan Figure

Skating award (yes this was a hockey banquet) for being the only kid on

the ice to be able to do a Mohawk and a single foot spin. It was lots

of fun!

Enjoy the day!

and Allie (8 poly)

________________________________

From: Pranke, Alia [mailto:Alia.Pranke@...]

Sent: Wednesday, March 30, 2005 8:57 AM

' '

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

- I appreciate you standing up for her. I don't think that it is

a

matter of whether or not she is a good person. I have no doubt she is an

amazing person. I have no problem with her opinion. I may not agree with

everything, but that is life. I do agree with the fact that a high

percentage of our children will outgrow this disease. And while we don't

always hear about the success stories here they are prevalent and

widespread. We are all aware of that. But, sometime when you are soo

embedded in your own personal battle, it is tough to remember that for

many

there will be a light at the end of the tunnel. I don't think this way

of

thinking is specific to JRA only, it could be applied to many situations

in

each of our own personal lives. However, I just have a problem with her

tone

and animosity. I just don't appreciate being sworn at or being belittled

myself. Like many here, I just hope to be able to move on and once again

focus on the good and the bad with our kids.

Alia and Caroline, age 3, poly and uveitis

Re: Just sick from parents to ignorant to learn JRA

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

[Guest guest]

Congrats for your kids! VERY exciting and I know you are very proud of them!

:-) I'm glad she gets to play hockey with JRA, I hope Madison is as strong and

I'm sure she will be! She's VERY strong and determined only at 2 ½! :-)

Ashlee (Madison, 2 ½, Poly)

Re: Just sick from parents to ignorant to learn JRA

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

[Guest guest]

Hey . In no way did I feel that you jumped in the middle of something!

I am so glad to hear about Allie's successes! I am glad to know that with

Humira there is help on the horizon for Caroline. I just hope that it will

be available soon! We almost saw Dr. Vehe last week. But, the clinic called

us before our appointment and told us that they had mistakenly booked

Caroline with Dr. Vehe instead of Dr. Akin and re-booked her appointment.

Wouldn't we all have been surprised it we had shown up for that one!

That is awesome about Allie! Next year we will have to make an effort to

come watch one of her games. We are always going to my nephew's hockey's

games, it wouldn't be that hard to fit in one more!!

The bracelets are coming!! I have a tracking number and they should be here

by Monday!! FINALLY!!!

Alia and Caroline, age 3, poly and uveitis

Re: Just sick from parents to ignorant to learn JRA

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

[Guest guest]

Alia,

We have figure skating on Monday at the Eagan arena, maybe if the

bracelets come in I can run to your house and pick them up! I can call

you at home on Monday too to see if they did come!

Have a great week!

________________________________

From: Pranke, Alia [mailto:Alia.Pranke@...]

Sent: Wednesday, March 30, 2005 10:12 AM

' '

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

Hey . In no way did I feel that you jumped in the middle of

something!

I am so glad to hear about Allie's successes! I am glad to know that

with

Humira there is help on the horizon for Caroline. I just hope that it

will

be available soon! We almost saw Dr. Vehe last week. But, the clinic

called

us before our appointment and told us that they had mistakenly booked

Caroline with Dr. Vehe instead of Dr. Akin and re-booked her

appointment.

Wouldn't we all have been surprised it we had shown up for that one!

That is awesome about Allie! Next year we will have to make an effort to

come watch one of her games. We are always going to my nephew's hockey's

games, it wouldn't be that hard to fit in one more!!

The bracelets are coming!! I have a tracking number and they should be

here

by Monday!! FINALLY!!!

Alia and Caroline, age 3, poly and uveitis

Re: Just sick from parents to ignorant to learn JRA

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