Re: General Parent & Breakout Session: JA update

[Guest guest]

Hi ,

Going to a Conference is a Experience you will have for a Lifetime. Your first one will be overwhelming. The 2nd will be even better. As you go you meet many families you met the prior year. This is Great.

I have been to 2 of the Conferences and each time I really experienced a Great informative and Learning time along with meeting Families again. It has helped me in everyway of this Disease we call Juvenile Arthritis. If you have not been to one I would encourage you to go. As Jo sends the Information she has learned you will see it is overwhelming to learn all at one time.

RobbinGet a sneak peak of the all-new AOL.com.

[Guest guest]

Thank you so much for the notes. I have never been to the conference

and have often wondered if it is something I should invest the time

and money in. Your notes are wonderful and helpful!

a 13, poly

[Guest guest]

, I gotta agree with Robbin, the first Conference sure can

be overhwelming... getting your head around where you have to be at

any given time, putting names to faces and vice versa, the enormous

amount of information that comes your way, let alone the language

barrier between us Aussies and you lot! LOL

That's why I said to my AF yesterday, that I HAVE to go to Ca in

2008, just to use the skills I was picking up in Hershey. LOL

They're happy with the notes I'm sending them, too. :-D

I am glad that my scribbles can help, I never knew what went on at

AJAO either, which is why I wanted to go. I am happy to share what I

learnt, as that was what I was doing anyway, representing all the

others that could not be there. Information is power! And power to

the people, right?

I just hope it makes sense. Dr Zemel has tried to email his

presentation, but it didn't work, so we'll try again.

Maybe others who went, could fill in any gaps, or clarify anything

that I have got wrong??

Jo

Bayly, 5, extended oligo (Who wants to come back to American School

sometime, and his little sister Violet will come too, if we get back

there.)

>> Hi ,

> Going to a Conference is a Experience you will have for a

Lifetime. Your > first one will be overwhelming. The 2nd will be even

better. As you go you > meet many families you met the prior year.

This is Great.

> I have been to 2 of the Conferences and each time I really

experienced a > Great informative and Learning time along with

meeting Families again. It > has helped me in everyway of this

Disease we call Juvenile Arthritis. If you > have not been to one I

would encourage you to go. As Jo sends the Information > she has

learned you will see it is overwhelming to learn all at one time.

> Robbin

[Guest guest]

Do you know where in CA the 2008 conference is?? that is much closer

to me and a lot less expensive (i live in NV).

I want to be informed in order to help a but to be honest, I think

I am still in denial. After 2 years, I keep hoping that someone is

going to tell me they made a mistake and she doesn't really have this

awful thing....is that ridiculous or what??? In some way, I feel like

if I go to the conference then I am accepting this fate...I know it is

crazy.

My daughter handles everything so much better than I do...I have a lot

to learn from her....she takes the 8 meds a day and weekly shot w/o

complaining.... and i go between fixating on the problem and trying to

pretend they made the wrong call...wow never admitted that to anyone.

Thanks for listening and the great information

> >> Hi ,

> > Going to a Conference is a Experience you will have for a

> Lifetime. Your > first one will be overwhelming. The 2nd will be even

> better. As you go you > meet many families you met the prior year.

> This is Great.

> > I have been to 2 of the Conferences and each time I really

> experienced a > Great informative and Learning time along with

> meeting Families again. It > has helped me in everyway of this

> Disease we call Juvenile Arthritis. If you > have not been to one I

> would encourage you to go. As Jo sends the Information > she has

> learned you will see it is overwhelming to learn all at one time.

> > Robbin

>

[Guest guest]

According to the nifty little surfboard fridge magnet we got...

2008 JA COnference

" Cruisin for a Cure "

July 10-13, 2008

Hilton, Costa Mesa, Ca.

For info call the Southern Ca Chapter, 1.800.954.2873

We hope to make it back again,

Jo

Bayly, 5, extended oligo

> > >> Hi ,

> > > Going to a Conference is a Experience you will have for a

> > Lifetime. Your > first one will be overwhelming. The 2nd will be

even

> > better. As you go you > meet many families you met the prior

year.

> > This is Great.

> > > I have been to 2 of the Conferences and each time I really

> > experienced a > Great informative and Learning time along with

> > meeting Families again. It > has helped me in everyway of this

> > Disease we call Juvenile Arthritis. If you > have not been to

one I

> > would encourage you to go. As Jo sends the Information > she has

> > learned you will see it is overwhelming to learn all at one time.

> > > Robbin

> >

>

[Guest guest]

Val,

Very well said darling.

RobbinGet a sneak peek of the all-new AOL.com.

[Guest guest]

Hi ,

I just wanted to tell you that I think most of us can relate to your feelings of denial on one level or another. I don't think I ever thought or looked for someone to come and tell me it was a big mistake (though I think I had a dream about it once...) - I do remember moments at my first conference where I felt so overwhelmed with all the activity, all the people I was meeting and the mountain of information I was trying to absorb. It had been a year since had been dx when we attended in Minneapolis - and I remember someone telling me about how they attend every year, they have AJAO scrapbooks and that it was like a family reunion - and I was going to really get to know everyone over the years. I remember walking away - tears in my eyes and thinking to myself: "You are all very nice and I really appreciate all that everyone is doing, but this isn't a club that I want to be a permanent member of: we can be friends and all but, - we are going to beat this thing and get on with our lives." and as soon as I finished that thought I had to go to my hotel room, sit on the floor and have a good cry because that is when it sunk in that I had absolutely no control over this - that I had to embrace this group and look to them for help, guidance, information and the friendship I would need to best prepare for this JRA journey we were on. Now, I am really disapointed when I have to miss a conference & cherish the times the local chapter gets together and I can touch base with those I care so much about and obtain the latest info that I continue to learn from.

Hang in there - you are not alone.

Val

Rob's Mom (9,systemic)

Re: General Parent & Breakout Session: JA update

Do you know where in CA the 2008 conference is?? that is much closer

to me and a lot less expensive (i live in NV).

I want to be informed in order to help a but to be honest, I think

I am still in denial. After 2 years, I keep hoping that someone is

going to tell me they made a mistake and she doesn't really have this

awful thing....is that ridiculous or what??? In some way, I feel like

if I go to the conference then I am accepting this fate...I know it is

crazy.

My daughter handles everything so much better than I do...I have a lot

to learn from her....she takes the 8 meds a day and weekly shot w/o

complaining.... and i go between fixating on the problem and trying to

pretend they made the wrong call...wow never admitted that to anyone.

Thanks for listening and the great information

> >> Hi ,

> > Going to a Conference is a Experience you will have for a

> Lifetime. Your > first one will be overwhelming. The 2nd will be even

> better. As you go you > meet many families you met the prior year.

> This is Great.

> > I have been to 2 of the Conferences and each time I really

> experienced a > Great informative and Learning time along with

> meeting Families again. It > has helped me in everyway of this

> Disease we call Juvenile Arthritis. If you > have not been to one I

> would encourage you to go. As Jo sends the Information > she has

> learned you will see it is overwhelming to learn all at one time.

> > Robbin

>

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[Guest guest]

I'm still in denial as well. Libby has only been symptomatic for 9 months

and diagnosed for 5. I keep hoping / thinking it was a mistake...I am

right there with you.

Cheri

Re: General Parent & Breakout Session: JA update

> Do you know where in CA the 2008 conference is?? that is much closer

> to me and a lot less expensive (i live in NV).

>

> I want to be informed in order to help a but to be honest, I think

> I am still in denial. After 2 years, I keep hoping that someone is

> going to tell me they made a mistake and she doesn't really have this

> awful thing....is that ridiculous or what??? In some way, I feel like

> if I go to the conference then I am accepting this fate...I know it is

> crazy.

>

> My daughter handles everything so much better than I do...I have a lot

> to learn from her....she takes the 8 meds a day and weekly shot w/o

> complaining.... and i go between fixating on the problem and trying to

> pretend they made the wrong call...wow never admitted that to anyone.

>

> Thanks for listening and the great information

>

>

>

>

>

>

>

>> >> Hi ,

>> > Going to a Conference is a Experience you will have for a

>> Lifetime. Your > first one will be overwhelming. The 2nd will be even

>> better. As you go you > meet many families you met the prior year.

>> This is Great.

>> > I have been to 2 of the Conferences and each time I really

>> experienced a > Great informative and Learning time along with

>> meeting Families again. It > has helped me in everyway of this

>> Disease we call Juvenile Arthritis. If you > have not been to one I

>> would encourage you to go. As Jo sends the Information > she has

>> learned you will see it is overwhelming to learn all at one time.

>> > Robbin

>>

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>

>

>

>

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