Re: Hey

[Guest guest]

In a message dated 12/18/03 10:02:03 AM Eastern Standard Time,

monica-jb@... writes:

<< We may not even have EDS, but he will see us because of ' 3

spontaneous pneumothroaxes this year. 's leg is also a concern. >>

Oh my gosh, !!!! I have been following your emails, but was not with

it as I came in on it in the middle of conversation, since I just signed back

on the list, after being very ill for a few months. My name is Ginley.

I will keep you all in my prayers, and pray that you and your daughters will

stay well, and will be well soon, with little pain. Take Care.

Hugs,

Sue

[Guest guest]

I should reply to you off the board, but I don't know how to do that, so

everyone, please bear with me, or just delet this!

So you live on ? Cool!

We actually live in Seattle, Washington now. I'm originally from Hermosa Beach,

California. We lived in England for 5 years, until 2 years ago. So, we had the

chance to visit a lot of great places like Greece. That was actully where we

had our first possible EDS problem with . She got what was diagnosed as

tendonitis from playing in the water and jumping off the boat. What kid gets

tendonitis from that?

Turkey was fabulous too, but I know how some of you feel about each other. I

would never go back there now, even though we stayed in a little fishing village

that is still probably very safe.

So, how are you finding the health care there for your EDS? Our experience with

the hospital in Town was pretty scarey. Maybe it was because we didn't

speak the language, but the xray techs were smoking when they xrayed s

leg. That was a big shock, since here in the US, you can't smoke anywhere. You

can kill someone and get off, but don't you dare smoke next to anyone! That's

true!

Are you getting the proper help? We had a great dr in Faliraki who treated the

tourists (there's a lot of British young ones getting drunk every night in

Faliraki), who we saw a few times. We can't go anywhere without seeing a

doctor! He was wonderful, and knew right away it wasn't tendonitis. But, he

really couldn't do anything, cause we were only there for 2 weeks.

We don't have the EDS diagnosis yet. Me and my 2 daughters have an appt with

Dr. Byers, the genteticist in February. We may not even have EDS, but he will

see us because of ' 3 spontaneous pneumothroaxes this year. 's leg

is also a concern. Although, Dr. Byerses assistant says that he considers EDS

hypermobility type, and begnin hypermobility syndrome to be the same thing. We

do have begnin hypermobility syndrome. Anyway, we are in the process of finding

out just what the heck is wrong. Too many things, and they ALL point to EDS.

Anyway, Greece is absolutly beautiful. My husband Tom and I spent many hours

trying to figure out just what color the water is. Like no other color we've

ever seen. Still don't know what it is!

I got really bad knee pains from walking up all the stairs at the butterfly

place. And, a little panic attack from silver springs - couldn't go through

that little dark tunnel. (Funny how I remeber all our aches and pains from

every trip!)

But, that's where I had the BEST EVER yogurt with honey on it. I'll never

forget that yogurt! haha And the salads!

And, my son and I saw an octopus while snorkeling, and it scared the

living daylights out of us!

We had lot of funny expeiences over there, like when we asked for glasses of

milk with our dinner, and they thought we were crazy. I guess you guys don't

drink milk? we got the milk, but it was warm. We laughed and laughed so many

times at our ignorance!

We stayed in Afandu, and the people there were so nice to us, especially when

they found out we were American and not British. They get clobbered with the

British tourists, and most of them spend their holiday drinking enormous amount

of alchohol. (I must say that uzo was pretty darn good, and strong! Just can't

go to Greece and not have some of that! Mixed with the heat - oh boy!)

Tom even left our video camera at a resturaunt, and an hour later, we found an

old man looking around for us to give it back. Amazing!

So many great memories of that trip. I'm gonna go get out those pictures now

and have another look at them. We had so much fun there. I bought lace,

dishes, tiles - well loads of stuff, that is now all over my house here in

Seattle. I wish I had bought more tiles. I don't know if we'll ever get back

there. It's so far from Seattle.

How is the tourist business now? Are you guys hurting at all? I know

has a HUGE tourist business. I know it's the off season right now, but was

wondering how this last summer was. I was thinking you should be ok, but with

all the problems so close by, people tend to stay away. I hope it isn't having

too much of an impact on you guys.

Sorry this got so long. I jsut couldn't seem to stop typing!

Hugs,

Hey

Surpriiiiiiiiiiise. I'm so happy that you and your family spent a

nice time in my island! Hope you can come back one day. If I'm not

too intruding, where do you come from and what type of EDSer are you?

Hugs

Tia

[Guest guest]

In a message dated 12/18/03 9:46:56 PM Eastern Standard Time,

monica-jb@... writes:

<< Thanks for the prayers. As you may have read, Mike Uggen healed my

today. The most amazing thing I've ever seen. >>

That is so wonderful!!! The prayers and Mike's healing energy is working! i

am so thrilled to hear this too! It breaks my heart everytime I hear of a

child suffering with EDS so much. Two of my three children have VEDS, and the

one that is negative has benign joint hypermobility. It is very

strange.....his joints are just as bad as the rest of us, perhaps worse. They

are not sure

if there is the very rare and unusual occurance of two different types of EDS

in our family, or if the testing is not accurate on everyone, or just the

joint hypermobility is being inherieted seperate of the vascular gene. This is

also true of one of my sisters, and she was diagnosed before me, and was how I

had heard of the disorder in the first place......so very odd she tested

negative.

Thanks so much for the well wishes......I have wonderful family and friends.

the outpouring of support has just floored me, and has helped sustain me.

Have a wonderful holiday with your family!

Hugs,

Sue