Welcome Newbies and big thanks to the oldies :O)

[Guest guest]

HI everyone...

Wow, what a busy week, I don't pick up my laptop for a few days and

look what I find... a TON of posts )))

I want to start by saying HI to all the new members, you have truly

found a wonderful place to find information and support. I would

have been lost without it. I am Helen, mom to (6) who was

dx with Systemic last year. It's been a rollercoaster, but i

couldn't have done it without the knowledge found here. is

having the best time hes had in the past 18 months. Currently hes on

sq MTX, prednisone, vioxx, folic acid and iron pills. fatigue is a

issue and I think always will be for him, but hes learning to self

moderated his activities and is enjoying his summer. I've only had

to keep him home from summer school for one day because he was just

too tired and needed the rest ( he slept 14 1/2 hours that night).

I look forward to learning more from all the wealth of information

the new systemic moms bring to the list.

To all my old friends, THANK YOU SOOO MUCH for sharing all that you

learnt at the conference with us unforuntates that didn't get to go.

I really do appericate the time you take to share the information

learn't with us all. Not only did it seem you all gained valuable

information it sounds like you also bonded wonderfully and formed

some lasting friendships. I am really going to try hard to go to RI

next year.

Hugs Helen and (6 for a few more weeks) Systemic.

p.s feel free to see and read his story at

www.caringbridge.org/mn.nicholasb

[Guest guest]

Good to see you posting again, Helen. Start saving for RI! We want to see

you there!

and Rob 15 Spondy

On Thu, 29 Jul 2004 20:42:54 -0000 " hburger64 " <hburger64@...>

writes:

HI everyone...

Wow, what a busy week, I don't pick up my laptop for a few days and

look what I find... a TON of posts )))

I want to start by saying HI to all the new members, you have truly

found a wonderful place to find information and support. I would

have been lost without it. I am Helen, mom to (6) who was

dx with Systemic last year. It's been a rollercoaster, but i

couldn't have done it without the knowledge found here. is

having the best time hes had in the past 18 months. Currently hes on

sq MTX, prednisone, vioxx, folic acid and iron pills. fatigue is a

issue and I think always will be for him, but hes learning to self

moderated his activities and is enjoying his summer. I've only had

to keep him home from summer school for one day because he was just

too tired and needed the rest ( he slept 14 1/2 hours that night).

I look forward to learning more from all the wealth of information

the new systemic moms bring to the list.

To all my old friends, THANK YOU SOOO MUCH for sharing all that you

learnt at the conference with us unforuntates that didn't get to go.

I really do appericate the time you take to share the information

learn't with us all. Not only did it seem you all gained valuable

information it sounds like you also bonded wonderfully and formed

some lasting friendships. I am really going to try hard to go to RI

next year.

Hugs Helen and (6 for a few more weeks) Systemic.

p.s feel free to see and read his story at

www.caringbridge.org/mn.nicholasb

[Guest guest]

Helen,

I sure hope you can make it to Rhode Island's conference next year.

You have been one of the highly educated one's for me since I found

the list last Feb. I met Becki at the conference and told her that

I often confused the two of you and had to refer to some notes I had

taken from the list because the ages of your boys are so close and

you are both so active and knowledgeable on the list. Thank you for

being here.

Stacia and Hunter,8,systemic,iritis

[Guest guest]

Good morning Everyone.

I will start sending info on what I learned and got info on soon. As some of

yall know Once I got back from San Diego. and me were off again to

Asheville, NC.

Got back wednesday night from that trip. My husband said are yall here to

stay this time. lolol. I told him darling I hope so cause I have to get the

group informed of what I found out. He said well I hope yall are staying cause I

cant handle another night without yall. lolol. See we have been married 28

years and always been together except for hospital stays.

Ok yall I have a new baby to help care for now. At least for now.

has been a little mother hen over the baby.

And she noticed a knot on the babys spine. I am carrying her to s

doctor today and have her checked out.

got me to myself and said ma dont tell me this baby has what i have

please. I told her not to worry about it

we will know when we see the doctor. I also told her hon if the baby has it

at least we know what to do now. And we can survive it. She said yes we can

cause we learned from me lolol.

Thanks to this group each have learned more from than our own doctors will

tell us and what to expect. Thanks to each one of you for your support and

info.

To the newbies here this group is very much informed of about everything if

one dont know another does. We are from many states and each state treats

different ways. So its great to get this info and tell your doctor.

Robbin

[Guest guest]

-Thanks .... you can bet im going to move heaven and water to

be there next year. Is it a national conferance again?? i thought

they only had those every few years and regional ones the other

years???

Hugs Helen and (6,systemic)

-- In , snooksmama@j... wrote:

> Good to see you posting again, Helen. Start saving for RI! We want

to see

> you there!

> and Rob 15 Spondy

>

> On Thu, 29 Jul 2004 20:42:54 -0000 " hburger64 " <hburger64@h...>

> writes:

> HI everyone...

>

> Wow, what a busy week, I don't pick up my laptop for a few days

and

> look what I find... a TON of posts )))

>

> I want to start by saying HI to all the new members, you have

truly

> found a wonderful place to find information and support. I would

> have been lost without it. I am Helen, mom to (6) who was

> dx with Systemic last year. It's been a rollercoaster, but i

> couldn't have done it without the knowledge found here.

is

> having the best time hes had in the past 18 months. Currently hes

on

> sq MTX, prednisone, vioxx, folic acid and iron pills. fatigue is a

> issue and I think always will be for him, but hes learning to self

> moderated his activities and is enjoying his summer. I've only had

> to keep him home from summer school for one day because he was

just

> too tired and needed the rest ( he slept 14 1/2 hours that night).

>

> I look forward to learning more from all the wealth of information

> the new systemic moms bring to the list.

>

> To all my old friends, THANK YOU SOOO MUCH for sharing all that

you

> learnt at the conference with us unforuntates that didn't get to

go.

> I really do appericate the time you take to share the information

> learn't with us all. Not only did it seem you all gained valuable

> information it sounds like you also bonded wonderfully and formed

> some lasting friendships. I am really going to try hard to go to

RI

> next year.

>

> Hugs Helen and (6 for a few more weeks) Systemic.

>

> p.s feel free to see and read his story at

> www.caringbridge.org/mn.nicholasb

>

>

>

>

[Guest guest]

-Gosh Stacia....

I would never in a million years classed me as an " expert " but thank

you. I still feel like such a newbie in so many ways. To be confused

with Becki is a honor, as I have always thought of Becki as one of

the resident sytemic experts and have always valued her knowledge

and advice, as I do all the list members especially the systemic

moms.

Staica, thank you for all you do with advocacy for JRA, because of

your email the other day I got up the courage to email my

congressmen and asked them to support the Arthritis bill. This is

something that I would never have done in the past. It was outside

my comfort level. Im a quiet and reserved kinda gal and wish i had

more courage and conviction to get more involved. Im one of those

people whos aways scared of looking stupid if they say the wrong

thing. I was pretty proud of myself for actually doing something!!

Hugs Helen and (6,systemic)

-- In , " staciar101 " <staciar@c...> wrote:

> Helen,

>

> I sure hope you can make it to Rhode Island's conference next

year.

> You have been one of the highly educated one's for me since I

found

> the list last Feb. I met Becki at the conference and told her

that

> I often confused the two of you and had to refer to some notes I

had

> taken from the list because the ages of your boys are so close and

> you are both so active and knowledgeable on the list. Thank you

for

> being here.

>

> Stacia and Hunter,8,systemic,iritis

[Guest guest]

WAY TO GO HELEN!!!! You're doing yourself and your whole state,

possibly country by mustering up the courage to write your

congressman. You should be so proud of yourself. Maybe next week

you can take another " baby step " lol and get your family to do the

same. Then maybe the next week ask a few friends to write. You now

know how easy it was, right? GREAT JOB!!

Stacia and Hunter,8,systemic,iritis

> > Helen,

> >

> > I sure hope you can make it to Rhode Island's conference next

> year.

> > You have been one of the highly educated one's for me since I

> found

> > the list last Feb. I met Becki at the conference and told her

> that

> > I often confused the two of you and had to refer to some notes I

> had

> > taken from the list because the ages of your boys are so close

and

> > you are both so active and knowledgeable on the list. Thank you

> for

> > being here.

> >

> > Stacia and Hunter,8,systemic,iritis

[Guest guest]

Yeah - I am glad to hear you will try to make it Helen! It's another

national. They couldn't get enough regional support so they are having a

national one two years in a row....

Alia

Re: Welcome Newbies and big thanks to the oldies )

-Thanks .... you can bet im going to move heaven and water to

be there next year. Is it a national conferance again?? i thought

they only had those every few years and regional ones the other

years???

Hugs Helen and (6,systemic)

-- In , snooksmama@j... wrote:

> Good to see you posting again, Helen. Start saving for RI! We want

to see

> you there!

> and Rob 15 Spondy

>

> On Thu, 29 Jul 2004 20:42:54 -0000 " hburger64 " <hburger64@h...>

> writes:

> HI everyone...

>

> Wow, what a busy week, I don't pick up my laptop for a few days

and

> look what I find... a TON of posts )))

>

> I want to start by saying HI to all the new members, you have

truly

> found a wonderful place to find information and support. I would

> have been lost without it. I am Helen, mom to (6) who was

> dx with Systemic last year. It's been a rollercoaster, but i

> couldn't have done it without the knowledge found here.

is

> having the best time hes had in the past 18 months. Currently hes

on

> sq MTX, prednisone, vioxx, folic acid and iron pills. fatigue is a

> issue and I think always will be for him, but hes learning to self

> moderated his activities and is enjoying his summer. I've only had

> to keep him home from summer school for one day because he was

just

> too tired and needed the rest ( he slept 14 1/2 hours that night).

>

> I look forward to learning more from all the wealth of information

> the new systemic moms bring to the list.

>

> To all my old friends, THANK YOU SOOO MUCH for sharing all that

you

> learnt at the conference with us unforuntates that didn't get to

go.

> I really do appericate the time you take to share the information

> learn't with us all. Not only did it seem you all gained valuable

> information it sounds like you also bonded wonderfully and formed

> some lasting friendships. I am really going to try hard to go to

RI

> next year.

>

> Hugs Helen and (6 for a few more weeks) Systemic.

>

> p.s feel free to see and read his story at

> www.caringbridge.org/mn.nicholasb

>

>

>

>