Guest guest Posted May 23, 2001 Report Share Posted May 23, 2001 Carol and everyone else . There's nothing wrong with taking a break from 'THE CREW' it can be a heavy and stressful place to hang out. There have been times when even the Man from the Future ( me ) is ready to scream ' ENOUGH'. Lets face it if 50 of your neighbours knocked on your door each day and all they ever talk about is brain tumours, you'd pack up and move house. On top of all this none of us are emotional warhorses, so its easy to hurt or get hurt in such a large group with so many unnaturally grumpy people. ( hehehehe ) So if you feel like glass for whatever reason, take a break but dont forget to come back. Everyone here means something to someone on the crew so keep in touch with friends. This has been an unauthorised announcement by no one in particular, namely Me Marcus From OZ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2001 Report Share Posted May 23, 2001 > If you are talking about a break from crew email, I think we've all done that. Do this, change to read on web only, then once a week just skim and read what fancies you. I did that and it was great. I might do again in fallwhen school is at its high. And yes, I get very disturbed talking and reading about these things too, i really dont know if it is healthy to read abt tumors 24/7, but that why we are here and the source of info is priceless. > ----- Original Message ----- > From: Marcus > > . Lets face it if 50 of your neighbours knocked on your door each day and> all they ever talk about is brain tumours, you'd pack up and move house. > ___________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2001 Report Share Posted May 23, 2001 In a message dated 5/23/01 9:57:25 AM Pacific Daylight Time, HandsomeJimmy@... writes: << . Lets face it if 50 of your neighbours knocked on your door each day and all they ever talk about is brain tumours, you'd pack up and move house. ___________________________________ Now lets not be hasty.Before I start packing I'd need to know afew things.What do these neighbors look like?are they single?can they cook?.I gotta admitt,if I lived next to 50 women that looked like pamela ,and cooked like Martha ,well.They could come over everyday and talk about the vitamin nutrition in cow dung for all I care,cuz I AIN'T MOVING:) Jimmy >> THAT WAS FUNNY HEHEHEH Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2001 Report Share Posted May 23, 2001 ----- Original Message ----- From: Marcus .. Lets face it if 50 of your neighbours knocked on your door each day and all they ever talk about is brain tumours, you'd pack up and move house. ___________________________________ Now lets not be hasty.Before I start packing I'd need to know afew things.What do these neighbors look like?are they single?can they cook?.I gotta admitt,if I lived next to 50 women that looked like pamela ,and cooked like Martha ,well.They could come over everyday and talk about the vitamin nutrition in cow dung for all I care,cuz I AIN'T MOVING:) Jimmy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2001 Report Share Posted May 23, 2001 Ok I couldn't resist... (pun on Mastercard commercials ahead) Hospital Tylenol - $22 Expert Neurosurgeon Consultation - $150 MRI - $3000 Daily Email discussion of tumors - Priceless For everything else there's mastercard.. On Wed, May 23, 2001 at 01:01:38PM +0000, cinnyd@... wrote: > > If you are talking about a break from crew email, I think we've all done > that. Do this, change to read on web only, then once a week just skim and read > what fancies you. I did that and it was great. I might do again in fallwhen > school is at its high. And yes, I get very disturbed talking and reading about > these things too, i really dont know if it is healthy to read abt tumors 24/7, > but that why we are here and the source of info is priceless. > > > > ----- Original Message ----- > > From: Marcus > > > > . Lets face it if 50 of your neighbours knocked on your door each day > and> all they ever talk about is brain tumours, you'd pack up and move house. > > ___________________________________ > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2001 Report Share Posted May 23, 2001 JIMMY YOU ARE SO FUNNY YOU ALWAYS MAKE ME LAUGH CATHERINE -----Original Message-----From: Jimmy Sent: Wednesday, May 23, 2001 12:48 PMTo: NF2_Crew Subject: Re: Taking a break!! ----- Original Message ----- From: Marcus .. Lets face it if 50 of your neighbours knocked on your door each day and all they ever talk about is brain tumours, you'd pack up and move house. ___________________________________ Now lets not be hasty.Before I start packing I'd need to know afew things.What do these neighbors look like?are they single?can they cook?.I gotta admitt,if I lived next to 50 women that looked like pamela ,and cooked like Martha ,well.They could come over everyday and talk about the vitamin nutrition in cow dung for all I care,cuz I AIN'T MOVING:) Jimmy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2001 Report Share Posted May 23, 2001 JD - I may have missed your bio - but how long have you been diagnosed with NF2? I am pretty new to the crew and I am finding out so much. There seems to be so many different degrees - mild to severe - and everyone is informative and supportive. It's hard at times, because some days you can get so many e-mails - you forget who's who. As far as your questions about insurance companies - I have to get everything precertified - I have to have a procedure code before calling the insurance company - if it needs authorization they don't give it to me - my doctor has to call - so I have to call my doctor - etc., etc,. etc. I hate it. As far as doctors - there are definitely good and bad - some differ in their opinions - then you have to make your choices. Well - I wish you the best - Dianne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2001 Report Share Posted May 23, 2001 I'm new here so I'm sorry if I come across as a screaming doctor and insurance company hater. I'm sorry for any of my e mails that only add negative feelings. But right now at least, I'm just so frustrated and angry because of fighting or dealing with the " system " and incompetents. I need to release that. And hopefully find out from others what they went threw and how they handled it. I also have such a thirst for information and knowledge of what NF2 is or ANs are, I need to know what's happening to my body. What can I do to stop it or at least slow it's progression. What the future holds for me, my wife, my son. Or find out what kind of treatment is best. I'm scared. I'm used to being in control. And now I feel I've lost that control. I think once I've been a member for a while I'll slow down a little with the e mails. I hope I could get and develop the skills to give the compassion and support Carol needs. Good luck to Carol and others like her. I hope you find the support you need. Thanks again for letting me try to express my self. Later, JD in AZ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2001 Report Share Posted May 23, 2001 welcome hairball '77, it is a great name. Your questions are never a burden. I am sure you have not contributed to Carol's need for a break. Relax, this is what the crew is here for. I commend your wish to learn and understand more about this disease. together maybe we can educate some of the experts! Rosemary. 24/5/01 8:45 AM, hairball77@... at hairball77@... wrote: > I'm new here so I'm sorry if I come across as a screaming doctor and > insurance company hater. I'm sorry for any of my e mails that only add > negative feelings. But right now at least, I'm just so frustrated and > angry because of fighting or dealing with the " system " and incompetents. > I need to release that. And hopefully find out from others what they went > threw and how they handled it. I also have such a thirst for information > and knowledge of what NF2 is or ANs are, I need to know what's happening > to my body. What can I do to stop it or at least slow it's progression. > What the future holds for me, my wife, my son. Or find out what kind of > treatment is best. I'm scared. I'm used to being in control. And now I > feel I've lost that control. I think once I've been a member for a while > I'll slow down a little with the e mails. I hope I could get and develop > the skills to give the compassion and support Carol needs. Good luck to > Carol and others like her. I hope you find the support you need. Thanks > again for letting me try to express my self. > Later, > JD in AZ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2001 Report Share Posted May 23, 2001 Oh Jimmy, you are great! It isn't often I laugh out loud when reading something, but you can make me do it! Marie Re: Taking a break!! ----- Original Message ----- From: Marcus .. Lets face it if 50 of your neighbours knocked on your door each day and all they ever talk about is brain tumours, you'd pack up and move house. ___________________________________ Now lets not be hasty.Before I start packing I'd need to know afew things.What do these neighbors look like?are they single?can they cook?.I gotta admitt,if I lived next to 50 women that looked like pamela ,and cooked like Martha ,well.They could come over everyday and talk about the vitamin nutrition in cow dung for all I care,cuz I AIN'T MOVING:) Jimmy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2001 Report Share Posted May 23, 2001 Thank you Rosemary. I hope so. Later, JD in AZ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2001 Report Share Posted May 24, 2001 JD, Welcome to the Crew. You don't need to apologize for your exasperation with the medical world, your frustration with the disorder. It is scary. As a mother of a 27-year old who was diagnosed with NF 12 years ago, (there is no family history of NF) I know the feeling. Being out of control is especially upsetting. Fortunately, we have the Crew now with caring people who can name good and bad docs, different approaches for medical intervention, and relate their negative and positive outcomes. Because this disorder is not well known, you will often know more than the doctors but just bring lots of material for them to become informed. The more info out there, the more contacts we all make, the more money will come in to NF for research and understanding so that at the very least we will have a treatment developed. I will pray for you to find some good medical support/intervention. Vicki Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.