So, I got the OK from my family to have a TOS get together here while Vic is in town...

I need some votes for what day is good?

I can do any day she is here but would prefer not halloween proper. (unless you are all coming to go trick or treating!!!)

I will have some simple food and drink, and I don't have a huge house, but I am sure we can find room for everyone!!!

If anyone has input, i am thrilled to hear it.

I had thought that maybe instead of going around to tell each person's personal stories like we did last time, that we could perhaps write a little story of ourselves, I'll put them together electronically and we could all be updated before we get here...then we would have more time to talk about all the other stuff...just a thought. I am open to anything!

Also, I am in the south bay, My house is about 10 minutes south of LAX.

Man you are good!!!

Love the story idea....
We could make it a Halloween party??? But prior to Halloween??? I could dress up like a person with tos....that is scary enough!!! LOL

ok love the input guys......Thanks Jo

love and hugs,
Victoria

lets see, first i guess select a date...too bad i can't embed a poll
please state your preference and if there is one you absolutely cannot do.


Oct 29 Monday
Oct 30 Tuesday
Nov 1 Thursday
Nov 2 Friday
Nov 3 Saturday

any of those dates would work as far as my (no) life goes... it would be the traffic patterns that i'd want to be mindful of - so if you could take that into consideration, johanna, if it does turn out to be a weekday, that is, i'd be grateful.

in other words, plan around rush hour, on either side of the work day - i'd be driving down from sherman oaks, so probably take the 405, over the river and through 'de woodz...

this is gonna be great! since it is a special occasion and the gathering will include our S.O.'s (i'm assuming), though - i wonder if it shouldn't just be a full-on dragout regular ole' party format, rather than set it up like a support group meeting? just a thought!

if we do submit our stories, maybe an outline structure of some type would be helpful to keep that part flowing. like type of TOS, when dx'd/by whom, surgery (yes/no - by whom, what type, where, etc.), tx plan, meds you're on or have tried in the past, modalities you've found helpful/not helpful, favorite docs, PT's, other practitioners...

not sure, i know litigation, unfortunately is a big part of some TOS'ers stories but doesn't apply to all of us - frustration, grief and loss certainly on point but does it contribute to a festive party spirit? i'm thinkin'....NOT!!!

it would be great if there were a contact sheet of some sort where each guest could sign in and give their phone/email/fax #'s (if they wanted to), so that we can keep in better touch with each other and the new people who will hopefully come to party down! maybe do this on a workbook or laptop, even... better for posterity purposes (& TOS handwriting CAN be, shall we say a bit "iffy" - well, my chicken scratch, anyway!).

this is gonna be so much fun!!! thank you, johanna, for offering up your home to do this. very brave of you, i must say!

anything i can do to help with the prep, or after - please let me know. ahem, i don't do windows. i don't sweep, use a vacuum, mop, wipe counters, dust, or... OK OK OK i'm fairly useless but i can delegate like there's no tomorrow!

now, if i can just find out where to rent a significant other to bring with... i'll be all set-

i have some insignificant others; do they count? ah, but they're flakes and would be no-shows at best... nevermind.

alison
"Be Brave"

oh yeah, my hubby will probly run screaming- as far as he's concerned a weekday would be great 'cause he won't have to be here

anyone else is welcome to bring their's tho!!!

I've had 6 TOS get-togethers and I find it easiest for everyone just to set a time on a weekend, put out food, and allow people to arrive as they can, and do not ask or expect anything else.

The last get-together we had we went around with each "story" which I felt was not helpful to the purpose of the meeting - I wish we had not done that, and had stuck to our old form of just conversing freely. The rigidity of the "story" format meant that we couldn't interact really, and before, we mingled and shared and a ton of information got passed out and passed around, including any phone numbers if one felt comfortable. People often bring print-outs of exercises, etc., or share doc info., but I think when they are on the spot of giving their history, it is too intrusive in person. Anyways, that's what I felt afterwards - no biggie.

With our various limitations, I find any request to fill out a story, form, or provide a phone number is asking too much. It is just enough for people to get their family member to get them to the house - you know what I mean? Most of us need to have some working individual bring us, so weekends are crucial. Also, most of us have to drive some distance, so again, weekends at midday are a good shot traffic-wise.

I will not impose my opinion further, but Johanna, it is up to you to decide what works for you and just do it, and you will have people show up, and a few won't be able to make it due to symptoms, etc. But keep it really simple for yourself, whatever that means for you. Otherwise, you're going to get one hell of a flare...and that's no fun!

So just keep it really easy, however you can, ok?

Also, just an aside, I feel these TOS parties are so important for the spouses.

Usually (except the last party) the "men" would all go to the kitchen or backyard and swap stories about how tough it is, as well as mingle with the other ladies and confirm that their spouse's symptoms were common...

Cyn's husband is really good at talking with them, sharing his strength.

After these parties, fiance felt he was not alone, that they understood him, and he said he had an unexpectedly good time! He actually looked forward to the next party.

Where else can a male spouse (or female) get the validation of how difficult it is to love someone with TOS???

So if you can trick or pay your spouse to come, it really is a rewarding experience for them.

Kit Kat....thanks so much for offering to host.

I am so there.

Love the electronic story idea.

Am sign me up for bringing food.

Mondays are not so good for me work wise, but the other days look good.

Lets chat on how else I can help.

Love ya and sorry I missed you yesterday

Oh an just a thought maybe the neuromuscular guy I go to might want to come talk. He's great

hi all,
ok this is looking good I am getting so excited now. I like the idea of spouses/partners coming....as mine needs a good whack of info from others!!! although he will have to bring me anyhow....didn't think of that or I can cab it if he is too busy......we shall see how his conference goes but i'd love it if he could share with others how hellish I am to live with but the invisible disabilities advocate book is helping him.... in a small way....bathroom reading...sad as it is he says that is his best reading time...

I can see what I can do about food I shall find something...or bring beverages??? I can do a bit to help clean up during, before, after???? I am as well unfortunately having no-life...except to tag along to marc's conferences.....

Love the mingle idea or sort of introduce ourselves first together then go our own way....or just come in and yell hey it's me and I'm here!!!

I guess traffic will be an issue.....I will need info on that.....as we get closer to the date!!!!

I really am getting excited to meet all you guys!!!!

love and hugs,
Victoria
Man am I glad I am coming to LA!!!

Fiance called tonight and said he'd take me.

That's how much he enjoys these events - they are powerful!

THANK YOU Johanna for doing this.