Guest guest Posted August 30, 2004 Report Share Posted August 30, 2004 They will call, Mark. But if it would help you to feel better, you could email them or try to call? I feel certain they won't pass you by though. Please let me know if you don't hear from them by the end of the week, OK? How about writing some more music to take your mind from it? Love Lana > ...and I can't let myself believe until I actually have an appointment, no > matter how much I really want to; I've had too many failures medically. Despite > trying to be careful, I find I've invested too much emotionally already; I > hate to think what I'd be like now if my anxiety wasn't controlled...arg...of > course, I keep wondering if maybe I didn't sound desperate enough in e-mails, > should get a cell phone instead of trying to keep my on eline free all the time, > should have done this, should have done that -- and of course, I can't do any > of it. Except keep letting the anxiety make me sick, I can do that, very well > evidently. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2004 Report Share Posted August 30, 2004 Mark, It's all right! I haven't got a call back either, and don't expect one for at least a week if not 2 weeks. They posted an email a few days ago saying they are incredibly bogged down with over 50 inquiries and to give them two weeks time. We'll all get out turn I'm sure. Back to the 'patients being patient' thing huh ;-) Hang in there Mark. I know, I too am kind of afraid I somehow won't 'qualify' for it or it will fall through somewhere. I'm sure it will work out in the end. Hang in there and patience my friend! (((HUGS))) -Rhea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2004 Report Share Posted August 30, 2004 Mark, It's all right! I haven't got a call back either, and don't expect one for at least a week if not 2 weeks. They posted an email a few days ago saying they are incredibly bogged down with over 50 inquiries and to give them two weeks time. We'll all get out turn I'm sure. Back to the 'patients being patient' thing huh ;-) Hang in there Mark. I know, I too am kind of afraid I somehow won't 'qualify' for it or it will fall through somewhere. I'm sure it will work out in the end. Hang in there and patience my friend! (((HUGS))) -Rhea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2004 Report Share Posted August 30, 2004 Mark, It's all right! I haven't got a call back either, and don't expect one for at least a week if not 2 weeks. They posted an email a few days ago saying they are incredibly bogged down with over 50 inquiries and to give them two weeks time. We'll all get out turn I'm sure. Back to the 'patients being patient' thing huh ;-) Hang in there Mark. I know, I too am kind of afraid I somehow won't 'qualify' for it or it will fall through somewhere. I'm sure it will work out in the end. Hang in there and patience my friend! (((HUGS))) -Rhea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2004 Report Share Posted August 30, 2004 I'm right there with you. I am not counting my chickens before they hatch. So much is going on right now. I can't get my hopes up just for them to be squashed. I know they said if we got the emails that we where in. But there is always something that comes up to prevent something to happen in my life. So slide over and I'll join ya'.....lol HUGGLES Grace EDS, It's a Life Thing http://www.ehlersdanlos.ca/whateds.htm Still no NIH call... ...and I can't let myself believe until I actually have an appointment, no matter how much I really want to; I've had too many failures medically. Despite trying to be careful, I find I've invested too much emotionally already; I hate to think what I'd be like now if my anxiety wasn't controlled...arg...of course, I keep wondering if maybe I didn't sound desperate enough in e-mails, should get a cell phone instead of trying to keep my on eline free all the time, should have done this, should have done that -- and of course, I can't do any of it. Except keep letting the anxiety make me sick, I can do that, very well evidently. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2004 Report Share Posted August 30, 2004 I worried about not being at home, too. So I emailed them my work number and asked them to try me there if I wasn't at home when they called. Hopefully they will !!!!! Patti Re: Re: Still no NIH call... In a message dated 8/30/2004 2:07:42 PM Pacific Standard Time, pmelcher@... writes: Mark -- Rhea's right -- I haven't gotten my call back yet either (and I worry about it, too!!!) But it hasn't even been a week yet -- I guess I'm really just very excited about it so it's hard to be patient!! Me either, I got my last email the same time you all did last week I think. I would presume they would leave a message if you can't be home? I'll try to take cell phone wherever I go, but we live close to mountains & the reception isn't always clear. Liza Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2004 Report Share Posted August 30, 2004 All waiting for that call. If you have a DX and you have been contacted by phone or email, you are in, just be patient. I know they are close to the 100 count of EDS patients, but I don't think they are over yet. If you don't have a DX and your still waiting, You'll get a phone call interview of questions. Dr McDonnell will decide from the phone interview if your symptoms fit the protocol. Dr McDonnell told me on the phone a few days ago, that she will be calling from her home one night to get caught up. So your call may come in the evening. You all know how busy Drs are, and they have a staff to take care of things. These Docs don't. They are trying their best, but they see patients all day. And they are moms too. I know it's hard to wait, but give them some time. They are trying. Dr McDonnell said she would get to everyone ASAP. When you get there, you'll see why it's hard. They take so much time with each patient. Very personal care. They don't run on a time clock like other Docs. A 15 minute time slot can turn into hours if you need it. The physical exam by both Genetics Doc usually takes an hour. You will get a schedule of time slots for tests and all when you get there. Your tests will run pretty much on time, But the Physical By the Docs, Don't hold your breath. That time can be way off by many hours. You will get the attention that you require. When they get to you. Dylan's physical was Scheduled for 2:30 PM, They got to us at 6:30. They can easily get behind in a day. But when it's your turn, You'll see why. Anyway, your sitting in a Hospital room flipping channels on the TV. Not like in a Drs' office where you are stuck watch the one stupid channel that is on. We are used to Docs having a staff to take care of things like appointments, It doesn't work this way here. And you have to remember, they are used to people applying by trickles, a little at a time. My announcement to CEDA took them by surprise. LOL. I warned them. They just aren't used to dealing with this volume of calls at once. We over loaded them. Good luck all Cindylouwho Re: Re: Still no NIH call... In a message dated 8/30/2004 2:07:42 PM Pacific Standard Time, pmelcher@... writes: Mark -- Rhea's right -- I haven't gotten my call back yet either (and I worry about it, too!!!) But it hasn't even been a week yet -- I guess I'm really just very excited about it so it's hard to be patient!! Me either, I got my last email the same time you all did last week I think. I would presume they would leave a message if you can't be home? I'll try to take cell phone wherever I go, but we live close to mountains & the reception isn't always clear. Liza Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2004 Report Share Posted August 30, 2004 Yes they will leave a message. Re: Re: Still no NIH call... In a message dated 8/30/2004 2:07:42 PM Pacific Standard Time, pmelcher@... writes: Mark -- Rhea's right -- I haven't gotten my call back yet either (and I worry about it, too!!!) But it hasn't even been a week yet -- I guess I'm really just very excited about it so it's hard to be patient!! Me either, I got my last email the same time you all did last week I think. I would presume they would leave a message if you can't be home? I'll try to take cell phone wherever I go, but we live close to mountains & the reception isn't always clear. Liza Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2004 Report Share Posted August 30, 2004 Yes they will leave a message. Re: Re: Still no NIH call... In a message dated 8/30/2004 2:07:42 PM Pacific Standard Time, pmelcher@... writes: Mark -- Rhea's right -- I haven't gotten my call back yet either (and I worry about it, too!!!) But it hasn't even been a week yet -- I guess I'm really just very excited about it so it's hard to be patient!! Me either, I got my last email the same time you all did last week I think. I would presume they would leave a message if you can't be home? I'll try to take cell phone wherever I go, but we live close to mountains & the reception isn't always clear. Liza Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2004 Report Share Posted August 30, 2004 Yes they will leave a message. Re: Re: Still no NIH call... In a message dated 8/30/2004 2:07:42 PM Pacific Standard Time, pmelcher@... writes: Mark -- Rhea's right -- I haven't gotten my call back yet either (and I worry about it, too!!!) But it hasn't even been a week yet -- I guess I'm really just very excited about it so it's hard to be patient!! Me either, I got my last email the same time you all did last week I think. I would presume they would leave a message if you can't be home? I'll try to take cell phone wherever I go, but we live close to mountains & the reception isn't always clear. Liza Quote Link to comment Share on other sites More sharing options...
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