RE: Competition? (sorry it got long)

March 28, 2005

Michele,

That was very nicely said.. I too feel the same way you do..

Emilie

Competition? (sorry it got long)

Just my thoughts - take them for what they worth. I have been coming to

this list for over 4 years. It is a lifeline to me. I have learned so

much. When you first come here, you do not know a whole lot usually. For

kids with systemic, they are usually much physically sicker than those

kids with pauci or poly. Not to diminish the effects of those, but

systemic kids have probably been through a ton of tests and maybe even

hospitalizations as drs try to figure out what is wrong. Those parents

that come here are understandably frightened, until they can get info

and a better handle on what is going on. We all feel a need to post our

kids stories - it is good to vent and it also lets the rest of us get a

better perspective on where that family is in the path of the disease.

It takes some kids a long time to find the right mix of drugs, and so

those parents are frustrated by their child's lack of progress. Some

kids respond quickly to NSAIDs and have few problems. Some will do well

at first, then as they grow and puberty kicks in things change and drugs

that worked no longer do, or other problems erupt (as happened with my

son). I believe this list is a safe place for anyone to vent and post

how they feel. We are here for each other, as a support group. We are

here to talk about our feelings as parents of kids with JRA. I

personally do not have access to a group locally. This is the place

where I can talk about my fears as a mom of a kid with this disease and

I know the people who are interested will respond. Or at least keep me

in their thoughts. If you were to see my son, you would never know he

had JRA. The meds he takes, the blood tests, the dr visits, are not

something we talk about with too many other people. I still have a need

to discuss my feelings about my son's illness. We do not focus on it at

home, it is simply a small part of our lives. My son at almost 18 is

much more worried about college, work and girls to sit around worrying

about his disease, or the affects the meds may have on him. Yet, it is

something he needs to be aware of. So I am able to come here and get

ideas on it all. This list has given me so much information - things my

son's dr cannot always touch on in a visit. He may not remember

everything, and what I have read here helps me to ask the right

questions. If medical info is what you are after only, Georgina's posts

are very good and its pretty obvious by the title that they are med info

related. People can choose to read only those. I remember feeling such a

sense of relief when I first came here - knowing there were other

parents out there who felt like I did. I never thought someone who

shared their story was trying to compete with me, just letting me know

someone " got it " as I like to say. I thank God for those people who help

me to understand more about this and who listen to me yak about my son.

When the Celebrex quit working and we had to add sulfasalazine and then

MTX the people here who had been where we were helped so much. I was

much less afraid because of their sharing. Again, just my thoughts on

the competition comment, Michele ( 17, pauci & spondy)

March 28, 2005

I just wanted to add 2 things because everything else was on the money.I used

to join in on some adult RA sites because occasionaly a parent would join

with questions.One time a comment was made about how everyone seemed to be doing

so poorly.The reason was the ones that had achieved very good control went on

with their lives and didn't need or want the constant support so you didn't

hear about the medicated remissions.

The second point being systemic kids are the rare form compared to Poly and

Pauci.At our JAAW conferance 90% were systemic and the Poly and Pauci was split

pretty even.The Ped rheumy who drove over 300 miles from Cincy made the

comment that while the room was filled with parents of systemic children, in a

pediatric rheumatoligy practice they still only make up 10-20% but those are the

sickest children and their parents are the most desperate to seek newer

treatments and options.

Without this list and the medical info Georgina posts my child would not be

one of the lucky ones.It took 2 yrs and gobs of drugs but now just 2 drugs and

he's almost as good as perfect and has been for over 2 yrs.

No childs arthritis is the same,no child responds to meds the same but all

our children deserve to lead as normal a life as possible.

We are all here to support every parent and every child no matter what type

of JRA.There is no competition for the sickest child to win out,thats just

crazy.You just have to remember that most people that are looking for and

needing

lots of support are those who's children are very sick and/or their arthritis

is very stubborn.

We are here for everyone and please don't let a comment bother you.The

trouble with the internet is it's not like talking on the phone one on one.

This whole thing needs to be put to rest so we can go on supporting each

other because that is what we do best.

Lots of love to everyone!

Becki and 6 systemic

March 28, 2005

" we are here for each other as a support group " Maybe it's just me or

possibly others are afraid to say anything. But when comments like

the 'rural Oregon' one and belittling the articles about children who

are living full lives are made, it is a personal affront to those of

use who have children like those mentioned in the articles. In this

group, I've felt that I should not say anything or comment. The

prevailing attitude is people can vent, etc and that seems to mean

without regard to the various effects JRA has on other families'

lives. My point was we don't all have it so bad and I personally

don't feel that anyone is here for me because my child and my

situation do not qualify as bad enough. As for the safe place to

vent, it's not feeling so safe now that I've gotten 3 replies to my

post and not a one has acknowledged that I was not the only one

compelled to respond to the insensitive 'rural Oregon' comment. The

fact that no one else responded to Alesha's post illustrates my point

perfectly. Where's the support for her?

> Just my thoughts - take them for what they worth. I have been coming to

> this list for over 4 years. It is a lifeline to me. I have learned so

> much. When you first come here, you do not know a whole lot usually. For

> kids with systemic, they are usually much physically sicker than those

> kids with pauci or poly. Not to diminish the effects of those, but

> systemic kids have probably been through a ton of tests and maybe even

> hospitalizations as drs try to figure out what is wrong. Those parents

> that come here are understandably frightened, until they can get info

> and a better handle on what is going on. We all feel a need to post our

> kids stories - it is good to vent and it also lets the rest of us get a

> better perspective on where that family is in the path of the disease.

> It takes some kids a long time to find the right mix of drugs, and so

> those parents are frustrated by their child's lack of progress. Some

> kids respond quickly to NSAIDs and have few problems. Some will do well

> at first, then as they grow and puberty kicks in things change and drugs

> that worked no longer do, or other problems erupt (as happened with my

> son). I believe this list is a safe place for anyone to vent and post

> how they feel. We are here for each other, as a support group. We are

> here to talk about our feelings as parents of kids with JRA. I

> personally do not have access to a group locally. This is the place

> where I can talk about my fears as a mom of a kid with this disease and

> I know the people who are interested will respond. Or at least keep me

> in their thoughts. If you were to see my son, you would never know he

> had JRA. The meds he takes, the blood tests, the dr visits, are not

> something we talk about with too many other people. I still have a need

> to discuss my feelings about my son's illness. We do not focus on it at

> home, it is simply a small part of our lives. My son at almost 18 is

> much more worried about college, work and girls to sit around worrying

> about his disease, or the affects the meds may have on him. Yet, it is

> something he needs to be aware of. So I am able to come here and get

> ideas on it all. This list has given me so much information - things my

> son's dr cannot always touch on in a visit. He may not remember

> everything, and what I have read here helps me to ask the right

> questions. If medical info is what you are after only, Georgina's posts

> are very good and its pretty obvious by the title that they are med info

> related. People can choose to read only those. I remember feeling such a

> sense of relief when I first came here - knowing there were other

> parents out there who felt like I did. I never thought someone who

> shared their story was trying to compete with me, just letting me know

> someone " got it " as I like to say. I thank God for those people who help

> me to understand more about this and who listen to me yak about my son.

> When the Celebrex quit working and we had to add sulfasalazine and then

> MTX the people here who had been where we were helped so much. I was

> much less afraid because of their sharing. Again, just my thoughts on

> the competition comment, Michele ( 17, pauci & spondy)

>

March 28, 2005

With regards to the " rural Oregon " comment, I can see how that can be

misconstrued. I personally felt it was best to let the person who made

the comment either explain it further (what was exactly meant) or

apologize if they felt it necessary. That seemed like something that

needed further explanation in my opinion. Since starting an argument is

not a good idea, I did not comment on that. I have just reread Alesha's

post and I didn't think she was looking for support per se, just stating

an opinion, letting someone know that her feelings were hurt. Again, the

rural comment seemed better left between those two to me. Maybe I read

her post wrong. Again, I repeat, my son is managing his JRA well. We

also are thankful that he is well controlled almost to the point of

medical remission. I was never personally offended by anyone's posts,

although I could see how the rural comment could be offensive to some.

My reason for posting I guess was to explain how it can seem to some

that there is a " my kid's sicker than yours " vein here. In my opinion,

people are just letting you know where they are at in their stage of the

disease. I am sorry if you feel you cannot post. I have never felt that

way and my son has never been super physically sick. He walked with a

limp, he could not run and playing sports was very painful when we

started this journey. Not any more. I still learn from everyone here. I

rejoice when someone makes it to remission, or they finally get a

diagnosis, or their kids are able to get off one med or another. I cry

when someone is sick, or their child or family are struggling. I may not

post or respond to everyone but as I said in my post, they are in my

thoughts and prayers whether I say anything here or not. I have posted

many times, with no one responding. It does not bother me. I know

someone read it and if they felt something or had any thoughts about

that subject they would post. I would hope that people would feel the

support that I have felt here, but I also understand that is not always

the case. Again, when I posted, it was simply my opinion and I was

trying to explain some posts. I am sorry if anyone was offended by what

I had to say. Michele ( 17, pauci & spondy)

Re: Competition? (sorry it got long)