Re: Re: Duffy's book

[Guest guest]

that's true about "most of us" but if she can work and be out promoting her book it's no extra work to bring awareness to the public, besides unlike us she has "people" to help her. Just not understandable to me, it's not she has to do something everyday and every minute as you suggest.olehomepla wrote: I think it understandable because - just like anyone with this disease, most of us included, sometimes it is just hard to get out of bed. It is hard to answer the phone because you just don't have the energy to talk to someone. Somedays getting dressed is very hard and getting the newspaper a challenge. I have put on two pairs of glasses to then read. I do not agree with her about not speaking up..I am just saying I can understand not having the energy to

fight this illness and be a spoksperson too. Duffy has a book ...It is called> > > Model Patient: My Life As an Incureable Wise-Ass > > It is too bad that she does not want to promote research into this > disease....but it is understandable too.> > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > NS CHAT:- Has been cancelled for now.> > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

[Guest guest]

Reggie White is a major sore spot because of how his illness was treated in the media. They did everything but falsify the final cause of death to keep from saying that sarc had caused his death or was a major contributor. They kept writing about how benign sarc is, I would love to find the doctor that kept putting that in the newpapers accounts on Reggie White & figure out a way to trade bodies with him for just 24 hrs. Bet, he could get it right then. Grief but I was annoyed everytime I read that nonsense. The dude is supposed to be some kind of expert and obviously knows absolutely nothing about sarc.....Now I'll get off my soap box...ConnieClaude Manzanares wrote: and reggie white the football player that died who had it for years, why don't they make the public aware with their

positions they don't have to work everyday at it, tape some public service announcements, benefits, etc. Sure it's a tiring disease but it is certainly worth any effort to help resolve this awful disease. wrote: There are other's with this awful disease like Bernie Mac. -- Re: Duffy's book I think it understandable because - just like anyone with this disease, most of us included, sometimes it is just hard to get out of bed. It is hard to answer the phone because you just don't have the energy to talk to someone. Somedays getting dressed is very hard and getting the newspaper a challenge. I have put on two pairs of glasses to then read. I do not agree with her about not speaking up..I am just saying I can understand not having the energy to fight this illness and be a spoksperson

too. Duffy has a book ...It is called> > > Model Patient: My Life As an Incureable Wise-Ass > > It is too bad that she does not want to promote research into this > disease....but it is understandable too.> > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > NS CHAT:- Has been cancelled for now.> > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

[Guest guest]

Reggie White is a major sore spot because of how his illness was treated in the media. They did everything but falsify the final cause of death to keep from saying that sarc had caused his death or was a major contributor. They kept writing about how benign sarc is, I would love to find the doctor that kept putting that in the newpapers accounts on Reggie White & figure out a way to trade bodies with him for just 24 hrs. Bet, he could get it right then. Grief but I was annoyed everytime I read that nonsense. The dude is supposed to be some kind of expert and obviously knows absolutely nothing about sarc.....Now I'll get off my soap box...ConnieClaude Manzanares wrote: and reggie white the football player that died who had it for years, why don't they make the public aware with their

positions they don't have to work everyday at it, tape some public service announcements, benefits, etc. Sure it's a tiring disease but it is certainly worth any effort to help resolve this awful disease. wrote: There are other's with this awful disease like Bernie Mac. -- Re: Duffy's book I think it understandable because - just like anyone with this disease, most of us included, sometimes it is just hard to get out of bed. It is hard to answer the phone because you just don't have the energy to talk to someone. Somedays getting dressed is very hard and getting the newspaper a challenge. I have put on two pairs of glasses to then read. I do not agree with her about not speaking up..I am just saying I can understand not having the energy to fight this illness and be a spoksperson

too. Duffy has a book ...It is called> > > Model Patient: My Life As an Incureable Wise-Ass > > It is too bad that she does not want to promote research into this > disease....but it is understandable too.> > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > NS CHAT:- Has been cancelled for now.> > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

[Guest guest]

Reggie White is a major sore spot because of how his illness was treated in the media. They did everything but falsify the final cause of death to keep from saying that sarc had caused his death or was a major contributor. They kept writing about how benign sarc is, I would love to find the doctor that kept putting that in the newpapers accounts on Reggie White & figure out a way to trade bodies with him for just 24 hrs. Bet, he could get it right then. Grief but I was annoyed everytime I read that nonsense. The dude is supposed to be some kind of expert and obviously knows absolutely nothing about sarc.....Now I'll get off my soap box...ConnieClaude Manzanares wrote: and reggie white the football player that died who had it for years, why don't they make the public aware with their

positions they don't have to work everyday at it, tape some public service announcements, benefits, etc. Sure it's a tiring disease but it is certainly worth any effort to help resolve this awful disease. wrote: There are other's with this awful disease like Bernie Mac. -- Re: Duffy's book I think it understandable because - just like anyone with this disease, most of us included, sometimes it is just hard to get out of bed. It is hard to answer the phone because you just don't have the energy to talk to someone. Somedays getting dressed is very hard and getting the newspaper a challenge. I have put on two pairs of glasses to then read. I do not agree with her about not speaking up..I am just saying I can understand not having the energy to fight this illness and be a spoksperson

too. Duffy has a book ...It is called> > > Model Patient: My Life As an Incureable Wise-Ass > > It is too bad that she does not want to promote research into this > disease....but it is understandable too.> > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > NS CHAT:- Has been cancelled for now.> > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >