corina Posted April 10, 2005 Report Share Posted April 10, 2005 Hi all,yesterday I talked to Ernie on the phone to ask how she's doing. She told me that she's having one test per day and after each test they decide whether they will test further or not. So each day is a surpise of what's going to happen. What DOES happen is that they trigger her paralysis every day (several times) and take bp and blood. That's very hard on her because being paralyzed she can't move or talk and they keep on asking her how she's doing and how she's feeling and she CAN hear them but isn't able to answer. Imagine how frustrating that must be. She asked me what was new on the forum and I told her that Emily asked how she's doing and offerred her to post for her on the forum, which she liked. I didn't tell her about Morgan and Jake because I thought she needs all her strength for her tests and she can't do anything to help Morgan and Jake at this moment. She doesn't have access to a computer. I will tell her when she will leave the hospital. I hope she won't blame me for taking this decision for her. In a way I hope they will keep her for some longer because that means they are doing more tests on her. The doctors (who seem to be the best on this in her country) didn't see this before so I really hope they can figure this out and will be able to give her some answers.Well, it was nice to practise my French again (boy, they hardly speak english over there, I'm glad that Ernie does ), wishing you al the best from Ernie "dans l'h?pital),Corina Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted April 10, 2005 Report Share Posted April 10, 2005 Corina, Thank you so much for posting on Ernie's behalf. I'm sure she must be feeling exhausted--but probably is glad to be in a place where the doctors care so much about what is happening to her. If you speak with her again, please give her my regards. Nina Quote Link to comment Share on other sites More sharing options...
DawnA Posted April 10, 2005 Report Share Posted April 10, 2005 Thanks for the update on Ernie! I am so glad that they are finally taking this seriously and digging deeper to find answers. I too hope she stays there for a while so they get a lot done. Poor thing, how awful it must feel to be completely paralized. She is in my prayers.DawnA Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted April 10, 2005 Report Share Posted April 10, 2005 CorinaThank you for the update and for keeping Ernie linked to us via your phone call to her. I hope they can finally get some solid answers for her.Katherine Quote Link to comment Share on other sites More sharing options...
briarrose Posted April 10, 2005 Report Share Posted April 10, 2005 Thank you very much for keeping us updated on Ernie. Please send our best wishes and let her know that we are all thinking about her and our concerned. I feel horrible for the **** she's going through and wish there was an easier answer, like them being a little more medically advanced Anyway, we love you Ernie, hope you're feeling our vibes Steph Quote Link to comment Share on other sites More sharing options...
Dawg Tired Posted April 10, 2005 Report Share Posted April 10, 2005 I, too, am glad that she is seeing doctors that are interested in actually doing something for her. It must be horribly frustrating to her to have her paralysis triggered so much - but I hope that in the long run they will be able to help. She has been through SO much. Love you Ernie!! Quote Link to comment Share on other sites More sharing options...
corina Posted April 10, 2005 Author Report Share Posted April 10, 2005 Thanks you guys, I knew you are the best. When I call Ernie again, I'll read to her what you wrote her. I think that will help her!Well, I better go to bed now, because in my country it already is bed time. Sweet dreams to you all,Corina Quote Link to comment Share on other sites More sharing options...
geneva Posted April 10, 2005 Report Share Posted April 10, 2005 Corina, so nice of you to get in touch with Ernie. I am sure she appreciated your support. I had been thinking about her as well and it is good to hear that she is receiving good care, although those paralyzing periods sound so scary. But, I know she is very brave and if this can help the doctors help her, surely it will be worth it.please send my regards and hopes for more becoming known about her condition. Quote Link to comment Share on other sites More sharing options...
Guest GayleP Posted April 10, 2005 Report Share Posted April 10, 2005 I'm sorry I have been out of the loop. Ernie and I e mail often but she never mentioned going into the hospital.I hope she is doing OK. Give her my best.GayleP Quote Link to comment Share on other sites More sharing options...
Guest Julia59 Posted April 10, 2005 Report Share Posted April 10, 2005 Corina,Please give Ernie my warmest wishes, and tell her that I am praying for her.It was such a pleasure to meet her when she came to Toledo to see Dr. Grubb.She also stayed in town and attended the conference we had in Oct. 2002.I'm only a few blocks from MCO.Julie :0) Quote Link to comment Share on other sites More sharing options...
blackwolf Posted April 11, 2005 Report Share Posted April 11, 2005 Thank you Corina,send her all my prayers and wishes for some answers.blackwolf Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted April 11, 2005 Report Share Posted April 11, 2005 I am so glad you gave us this update Coring!I know Ernie has been waiting to get some good testing done! Please send her my good wishes and I hope she gets lots of answers.best regards, tearose Quote Link to comment Share on other sites More sharing options...
calypso Posted April 11, 2005 Report Share Posted April 11, 2005 Best wishes to Ernie for some good medical help and guidance.Amy Quote Link to comment Share on other sites More sharing options...
EarthMother Posted April 11, 2005 Report Share Posted April 11, 2005 La pens?e de vous. EM Quote Link to comment Share on other sites More sharing options...
RunnerGirl Posted April 11, 2005 Report Share Posted April 11, 2005 Corina: Hallo! Thanks so much for keeping us updated on Ernie. I've had a soft spot in my heart for her since we corresponded a while back regarding her case and that of her brother. I hope she gets some much deserved answers during her stay. Better yet, let's hope she can get some appropriate treatment to get her on the road to better symptom management and eventual recovery. RunnerGirlps. Are the bulbs yet in full bloom in your beautiful country? :-) Quote Link to comment Share on other sites More sharing options...
morgan617 Posted April 12, 2005 Report Share Posted April 12, 2005 Corina, please give ernie my best and as it turns out it appeared to be killer worry for a benign thing, so I'm glad you didn't mention it. Tell her I hope they figure out very soon what is wrong and can really help her. Give her my best. morgan Quote Link to comment Share on other sites More sharing options...
DancingLight Posted April 13, 2005 Report Share Posted April 13, 2005 merci beaucoup corina!i am trying to think of something else to write in french, but it is just a bit too foggy in my memory!i think it is so wonderful that you and ernie spoke across the world like that! isn't it amazing how this site has brought us togther. i love too, that people have branched out and then take extra special care of each other during times like this. sometimes the site is too mcuh to take on, so it is nice to know that you have a contact to keep you updated with you are away!i have followed ernie here and on ndrf for a very long time...and i just hope so much for her that she will find some answers that help her to feel better.having paralysis like that sounds so terrible.anyway, tell her 'allo' from emily! bon nuit, emilyp.s. corina...we are all anxiously awaiting YOUR report of your drs. appt....i pray that it was helpful! Quote Link to comment Share on other sites More sharing options...
corina Posted April 13, 2005 Author Report Share Posted April 13, 2005 Chere Emily,you are so right about talking to people all over the world. I couldn't have thought of this 5 years ago!!!! I was soooo happy to have found all of you here on DINET, it makes such a difference.I'm trying to call Ernie today (ahhhhh the timedifference between the most of you and me sometimes gives me a hard time planning things) and let you all know.I'll write about my doctors appointment later, have to rest first doesn't that sound familiar???? Corina Quote Link to comment Share on other sites More sharing options...
corina Posted April 13, 2005 Author Report Share Posted April 13, 2005 Hi all,well, I just called Ernie. She's coming home today. Runnergirl: the bulbs are in full bloom right now, not for much longer though. How do you know about the bulbs and my country? Have you ever been in The Netherlands? If you have seen the bulbfields you probably were very close to where I live!!!Corina Quote Link to comment Share on other sites More sharing options...
RunnerGirl Posted April 13, 2005 Report Share Posted April 13, 2005 Hi, Corina! Yes, I have been to The Netherlands before, though I didn't get to spend much time outside of Amsterdam. I've been there twice, both times in the Fall, so I have never seen the bulbs in their full glory! (When I was in graduate school, I spent a summer living in Barcelona, Spain, where I met a wonderful Dutch man that I began dating. After the summer, I moved back to Washington, DC and he went back to Amsterdam. We tried to maintain the long-distance relationship for a while, but needless to say it's difficult with an ocean between us! That was more than 10 years ago and I'm now happily engaged to another man, but I'm still friends with my Dutch ex-boyfriend. He's actually from Leiden and says the next time I'm in The Netherlands I MUST get outside of Amsterdam and see the beautiful countryside! Thanks, again, for keeping us posted on Ernie. We'll look forward to updates from both of you when you've both had a chance to rest up! Take care of yourself!Warm regards from across the pond,RunnerGirl Quote Link to comment Share on other sites More sharing options...
corina Posted April 13, 2005 Author Report Share Posted April 13, 2005 Runnergirl,would you believe it? I actually have worked in Leiden and my son is going to school there. It's also close to Amsterdam. Isn't the world small, or what????I'm glad you found a new "love of your life" If ever you come to the Netherlands again, your invited!!!!Best wishes,Corina Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted April 13, 2005 Report Share Posted April 13, 2005 Thank you for the update corina.WELCOME HOME ERNIE!As soon as you feel up to it I want to hear all about your experience!I have been wishing all good news and good treatment.best regards, tearose Quote Link to comment Share on other sites More sharing options...
morgan617 Posted April 13, 2005 Report Share Posted April 13, 2005 Ernie, glad your home, but not as glad as you I'm sure! Hope you are okay and let us know how you are, when you are up to it. morgan Quote Link to comment Share on other sites More sharing options...
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