Back from conference

[Guest guest]

Hi everyone!

Well, I'm back (at least physically) from the conference, and what a

conference it was!! IT WAS WONDERFUL!!! THANK YOU to Judy King's

group for doing such a GREAT job with everything!! I'm so impressed.

And for those of you who don't know, I lost my brand new video camera

and digital camera the first day! Judy, from CA was an ANGEL and had

picked it up for me and turned it into the registration desk, but it

wasn't discovered until Thurs. evening. My trip had been ruined by

my horrible, scattered self until the time it was returned, so I

thank Judy from the bottom of my heart, for letting me enjoy the rest

of the conference! AND for saving my marriage! LOL!

It was so wonderful to finally get to meet Jill in person and also

Beth! I had a ball! I do have the pictures downloaded, but Mike

said our provider will only let us send so many, so you may be

receiving several emails that include the pics. Unfortunately, I

won't be able to begin to send them until next Tues. probably, as we

leave town (again!) today for Shanna's. They have an annual party

and we had already committed to go - which I really WANT to, but I

have to tell you, I'm TOTALLY exhausted! I was up til 2:30 Wed.

night getting ready for work on Thurs. Then after we get home from

Shanna's on Sun. eve. I have work and Mon. eve. I teach TKD. So

Tuesday will be the earliest time I get to send them. More than

likely, I will upload them to Walmart or some place like that so

everyone can get on and take a look at them. I didn't take a whole

bunch, it was just too busy to try to take lots of pictures! I

haven't even signed back on the lists as yet - just too much to do,

and seems overwhelming right at the moment. I have gotten on and

read a few posts, but haven't responded. I will sign back on Tues.

as well. I got back in Omaha Wed. at 4:30 p.m. Flights were fine,

but the 2nd one was late leaving and arriving. Sis stayed on the

phone with me until my name was called for a ticket. I was kind of

nervous after the previous day, as I was scheduled for the last

flight out of Buffalo, and for some unknown reason, it was sent back

to Chicago, and eventually canceled altogether. There was no way I

could have made it all the way home to Omaha, so Sue's husband,

Jerry, had to turn around an hour after he dropped me off, and come

and get me again! Sue and her family showed me an absolutely

wonderful time, and it was GREAT to get to know Aase better! We have

a lot in common, and I just love her! I've learned not to schedule

the last flight of the day when flying standby! Sis and Lennie

were WONDERFUL in helping me and calming my frazzled nerves! THANKS

SIS!

My videos didn't turn out as well as I had hoped. One is totally

unusable, as the speaker didn't use the microphone, and on another, I

was almost too far away. But I still have SOMETHING, at least! I

began to read the chronic pain book (which was free-more on that

later)on the plane. I looked through the information from the

meditation talk last night, and it looks great! I will try to find a

way to share that with everyone. More on the information I got

later.

I just wanted you all to know that I missed you all and am glad to be

able to correspond again. I'm sorry if I missed birthdays and such,

and I send greetings to all those I missed. For those of you who

requested prayers, I've read the posts and am filling your requests,

but just haven't had time to respond to the emails. I will be

sending some personal emails to some of you next week sometime, but

please feel free to email me personally at home; though keep in mind

I am gone this weekend.

I hope all of you are well as can be expected! I've missed you!

Love Lana

[Guest guest]

Welcome back, Lana

I am so glad you guys got to go meet Jill. She sent me a photo - looks like

you were all having fun!

-Barb

[Guest guest]

Yes, we had a ball, Barb! I so wish you could have been with all of

us! I was so tickled Mike got more amazing results there too! I'll

plan on seeing you at the next conference for SURE! Right??

Talk to you soon!

Love Lana

> Welcome back, Lana

>

> I am so glad you guys got to go meet Jill. She sent me a photo -

looks like

> you were all having fun!

>

> -Barb

[Guest guest]

Welcome back Lana - we missed you! Glad you had a great time and

hope you are recovering now. Take and I'll talk with you more later -

got to scoot as I'm off to see my grandparents.

Love and hugs....Jo

xxx

[Guest guest]

BEAUTIFULLY SAID, CINDY! I don't think I can add further to that, as

you summed it up in a nutshell! This was my second conference, and

at each one, I meet new people with new outlooks and come away

feeling even luckier than before! It IS so MUCH about the people! I

enjoy hearing the new information, but it is soon put away in the

back of my mind; but the people stay in my mind as well as my heart

at all times!

I don't recall if it was mentioned that there's a new type of EDS,

which is the Vulvular (hope I spelled that right!) type. It is like

classical EDS that has all of it's characteristics and also a heart

valve problem. I would need to consult my notes - but I'm betting if

anyone wants to know more, that it will be on the EDNF website.

I'm going to be copying some meditation notes that one of the

speakers gave out and then I'll put it in the files section of this

list to share. She also gave a CD of meditations, which I haven't

had time to listen to, but if I can, will try to copy for those who

are interested. There was also a CD on Chronic Pain. I'm not sure

if these are copyrighted or not, so it will depend on whether or not

I can try to share the CDs or not.

My husband is putting together the videos that I took for me. If

anyone has 'particular' questions that any of us may be able to

answer, please ask.

To end, I have to say that one of my FAVORITE people that I got to

meet in person was Cindy! She is the sweetest person, so supportive

and willing to help anyone at all! I don't know what I would have

done without her support and the support of friends when I

temporarily lost my brand new video camera as well as my digital

camera! (Thanks again Judy - CA!!!!)

Love Lana

> Hi , I wish you could have gone, maybe another time.

> I guess for me, as a first timer at the convention, it wasn't

exactly what I expected. It was better. The classes where OK. I

thought I'd learn more. A few where helpful and I walked away with

some new interests to explore. But the people... Wow! Finally meeting

the folks from this board and meeting people from other boards,

making friendships and an unspoken understanding. There is sharing at

such an intimate level, that in a normal situation does not occur. It

hard to put into words what happened there. Hard to explain what I

left with in a new since of awareness and understanding. It's not so

much about anything anyone said, it's more just watching and being in

the presence of so many people with EDS. Watching how they handle

things, live their lives, and simply learn to live their lives with

love and understanding despite the pain and hardship. Of course there

where some that thrive on the attention of their disability, and

those that sit in a corner and let the disability dictate their

lives. I walked away with a bigger picture of what EDS can do to a

person, for the good and the bad. And an appreciation of what a

person can do with their lives inspite of it. The conference is

about the people, not the Drs and speakers.

> I spent a bit of time as kind of an assistant to Mike at times.

His wife Darleen is a sweet, supportive, wonderful lady. Her ability

to stand by his side with the support and understanding on this

adventure he is on is amazing. Those of you that are able to meet

Mike and get his treatment please don't forget, Darleen is part of

what makes him whole. I for one appreciate Darleen as much as Mike.

It has been an honor to watch Mike grow into what he is becoming. And

it seems everytime I'm around him, my abilities grow too. Thank you

Darleen for being part of the whole.

> I guess over all, I have a better awareness of how I want to help

my son live with EDS. Somedays I have the mind set that I have a

disabled boy. That disables him more. I see that now. The conference

brought that awareness to me. I choose to change that to.... I have a

son that I love and will help to him to do anything and everything he

can. I will help him to do it alone. I will help him find a goal of

his choice and reach it. I lost that awareness somewhere along the

way, but the conference brought that back to me. I need to stop

enabling him, and to have him do more for himself. I will do it with

love and understanding and in a way that he will know I will be there

for him if he falls. But I can't pick him up, unless he can't get up

alone. It's time for him to choose if EDS will rule him or if he will

learn to live his life with EDS. I'm not sure how I'll do this yet,

but the awareness will help me find a way. This is what I learned

from the conference.

> Cindylouwho

>

>

[Guest guest]

BEAUTIFULLY SAID, CINDY! I don't think I can add further to that, as

you summed it up in a nutshell! This was my second conference, and

at each one, I meet new people with new outlooks and come away

feeling even luckier than before! It IS so MUCH about the people! I

enjoy hearing the new information, but it is soon put away in the

back of my mind; but the people stay in my mind as well as my heart

at all times!

I don't recall if it was mentioned that there's a new type of EDS,

which is the Vulvular (hope I spelled that right!) type. It is like

classical EDS that has all of it's characteristics and also a heart

valve problem. I would need to consult my notes - but I'm betting if

anyone wants to know more, that it will be on the EDNF website.

I'm going to be copying some meditation notes that one of the

speakers gave out and then I'll put it in the files section of this

list to share. She also gave a CD of meditations, which I haven't

had time to listen to, but if I can, will try to copy for those who

are interested. There was also a CD on Chronic Pain. I'm not sure

if these are copyrighted or not, so it will depend on whether or not

I can try to share the CDs or not.

My husband is putting together the videos that I took for me. If

anyone has 'particular' questions that any of us may be able to

answer, please ask.

To end, I have to say that one of my FAVORITE people that I got to

meet in person was Cindy! She is the sweetest person, so supportive

and willing to help anyone at all! I don't know what I would have

done without her support and the support of friends when I

temporarily lost my brand new video camera as well as my digital

camera! (Thanks again Judy - CA!!!!)

Love Lana

> Hi , I wish you could have gone, maybe another time.

> I guess for me, as a first timer at the convention, it wasn't

exactly what I expected. It was better. The classes where OK. I

thought I'd learn more. A few where helpful and I walked away with

some new interests to explore. But the people... Wow! Finally meeting

the folks from this board and meeting people from other boards,

making friendships and an unspoken understanding. There is sharing at

such an intimate level, that in a normal situation does not occur. It

hard to put into words what happened there. Hard to explain what I

left with in a new since of awareness and understanding. It's not so

much about anything anyone said, it's more just watching and being in

the presence of so many people with EDS. Watching how they handle

things, live their lives, and simply learn to live their lives with

love and understanding despite the pain and hardship. Of course there

where some that thrive on the attention of their disability, and

those that sit in a corner and let the disability dictate their

lives. I walked away with a bigger picture of what EDS can do to a

person, for the good and the bad. And an appreciation of what a

person can do with their lives inspite of it. The conference is

about the people, not the Drs and speakers.

> I spent a bit of time as kind of an assistant to Mike at times.

His wife Darleen is a sweet, supportive, wonderful lady. Her ability

to stand by his side with the support and understanding on this

adventure he is on is amazing. Those of you that are able to meet

Mike and get his treatment please don't forget, Darleen is part of

what makes him whole. I for one appreciate Darleen as much as Mike.

It has been an honor to watch Mike grow into what he is becoming. And

it seems everytime I'm around him, my abilities grow too. Thank you

Darleen for being part of the whole.

> I guess over all, I have a better awareness of how I want to help

my son live with EDS. Somedays I have the mind set that I have a

disabled boy. That disables him more. I see that now. The conference

brought that awareness to me. I choose to change that to.... I have a

son that I love and will help to him to do anything and everything he

can. I will help him to do it alone. I will help him find a goal of

his choice and reach it. I lost that awareness somewhere along the

way, but the conference brought that back to me. I need to stop

enabling him, and to have him do more for himself. I will do it with

love and understanding and in a way that he will know I will be there

for him if he falls. But I can't pick him up, unless he can't get up

alone. It's time for him to choose if EDS will rule him or if he will

learn to live his life with EDS. I'm not sure how I'll do this yet,

but the awareness will help me find a way. This is what I learned

from the conference.

> Cindylouwho

>

>