Guest guest Posted March 17, 2004 Report Share Posted March 17, 2004 Hi Jean!!! I don't know anything except the title for the session, which is, " A New Type of EDS-The Cardiac Valvular Form " . It is being done by Dr. Ulrike Schwarze from the Collagen Diagnostics Lab in Seattle, Washington. The conference is supposed to be where they are going to put the word out about it. They also are putting out the new " All Types " CD-Rom......so much exciting stuff at this year's conference. I am doing all right.......better than I was before actually, just battling all this does become exhausting sometimes. I am having a lot of pain, but feel it is mostly joint related pain. I hope......Things have been tough around here as my husband and we have been separated. It all feels like too much. Thanks so much for the supportive email, I really appreciate the prayers, they really help. I am so looking forward to the conference and seeing all my friends. This year is going to be so special, I can't believe how many of our list members are traveling to the conference. It is going to be great! Yes, it is hard to be a mom when you have a condition like this. My Ginny is a big help, and even the little ones always want to help take care of mom. It is so cute. They are so worried, you know kids know more than we suspect. This is the last thing I would have ever wanted for my children. I just can't think of anything worse than losing your mother at such a young age. Hopefully I can keep hanging in there, but all I am told is, " there is nothing we can do for you " . I try not to believe everything they tell me. they have rarely been right anyway, LOL!!! I am glad you are doing OK, or at least a little better than when we last talked. If you haven't booked your room yet, get on it as it seems there are a lot of people coming. We do have a block at another hotel nearby too, that will shuttle people back and forth, so it should be enough, but the response has just been so overwhelming. We have been having trouble with the 800 number for booking reservations and have not been able to resolve the issue. Go figure. The number right at the hotel is fine, it is . the Registration Packet should be going out next week I believe and i actually have a draft of it on my computer if you want to receive one that way. Well, you hang in there, I am Prayers for you and your family too! Hugs, Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2004 Report Share Posted March 17, 2004 they have rarely been right anyway, LOL!!! Boy, Sue you got that right! I'll tell ya, if prayers will keep people here longer, you and many others will hopefully be here a LONG, LONG, LONG time!! I know many who pray for all of you with the Vascular type - I'm only one. You give those kids a big kiss and hug from Frick, and tell them I'm very proud of them!!! :-) Love ya, Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2004 Report Share Posted March 17, 2004 they have rarely been right anyway, LOL!!! Boy, Sue you got that right! I'll tell ya, if prayers will keep people here longer, you and many others will hopefully be here a LONG, LONG, LONG time!! I know many who pray for all of you with the Vascular type - I'm only one. You give those kids a big kiss and hug from Frick, and tell them I'm very proud of them!!! :-) Love ya, Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2004 Report Share Posted March 18, 2004 Lana and Jean, Thanks, but I am embarrassed as that was meant to be a personal email to Jean. I didn't mean to pour my heart out so to speak to everyone here on the list. Oops...... Hugs, Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2004 Report Share Posted March 18, 2004 NEVER be embarrassed with me, Sue! Promise? Love Lana Quote Link to comment Share on other sites More sharing options...
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