Guest guest Posted September 4, 2000 Report Share Posted September 4, 2000 , I would love to have a copy. I have been upset for Gloria all day. Can't get her off my mind. I wrote her today too. Let's keep sending those funny cards. I think she can use them. Love Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2000 Report Share Posted September 4, 2000 , I would love to have a copy. I have been upset for Gloria all day. Can't get her off my mind. I wrote her today too. Let's keep sending those funny cards. I think she can use them. Love Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2000 Report Share Posted September 4, 2000 Hi and everyone Yes, please send me a copy, ! ********* I'm also very distressed about what's happening to Gloria...and very scared... But when it comes to 'getting' the doctors to cooperate, it's very difficult, they get very defensive and/or just pretend they don't hear you, unless you mention a lawyer... this is very frustrating, why should we be doing this at all? I understand that we should speak up and protect ourselves when it comes to our health... we can explain all 'we' know about RP and hand out all the print outs we have, but not all doctors whether in the ER or office will read it, and some will be very insulted and throw it back in your face.... OK, so those doctors we can 'fire', but many of you with HMO's or other medicare systems do not allow the luxury of picking and choosing doctors/specialists... either they are no longer seeing new patient's and/or need referrals, etc... we can insist and persist to be seen, but will have to be lucky to get away with it... Much of what posted about what we should do when visiting the ER makes sense, getting DR's names etc, but getting the doctors to actually listen about our health situation is like pulling teeth sometimes... I wish there was more we can do for Gloria.. sorry, I'm just very frustrated at this latest situation... Is there anyway for Gloria to be seen by Dr Trentham or Buckner? Can they be emailed and perhaps they can talk to her doctors? Carmela **************************************** >From: Hob@... >Reply-To: Rpolychondritisegroups >To: Rpolychondritisegroups >Subject: Anyone want this? >Date: Mon, 4 Sep 2000 17:24:02 EDT > >I am still ready to spit tacks I am so angry about what has happened to >Gloria. > >I am sending her a get-well card and am enclosing six pages of instructions >for her family to start keeping a notebook that will help her in the >future. > I outlined what should be in it, what to write in your medical history, >and >where to find some of the extra stuff like research articles and tutorials >to >print out on the internet. Also told them what to do with the info once >they >have it gathered -- how to use if for every ER visit and for every new >doctor. It is based on what I ran into in the beginning until I got >settled >in with my docs. > >I also told her husband some tough words to use on her doctor to get her in >hospital where she belongs. I sure hope he is willing to do that. > >I might also enclose a copy of Dr. Jerome Hermann's summary of RP research >in >the package with her card if I can find all of the parts of it I have >somewhere on my HD. > >I saved what I wrote and if anyone else feels like they would like a copy, >let me know and I will forward it to you. There is some stuff that is >personal for Gloria but it may help others to understand what I am getting >at >in terms of their own case histories. > > H. > _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Share information about yourself, create your own public profile at http://profiles.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2000 Report Share Posted September 5, 2000 , I'd like to receive it also. I've benefitted from many of your past posts. Thanks. Bill from NC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2000 Report Share Posted September 6, 2000 Please forward a copy of your instructions for Gloria. Jana doesn't need them at the moment but she files everything and labels it in case she needs it in the future. Thanks again, Patsy Quote Link to comment Share on other sites More sharing options...
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