[TMIC] gone to facebook
Hi, Since it seems most of the tmic group has gone to facebook,could you cc copies of emails to me? I miss you! Cheryl
Re: [TMIC] gone to facebook
Cheryl, How are you doing? I am still here, just haven’t been on the computer much. Am thinking of going to facebook, but will not give up the TMIC website. Janice From: rn11...@yahoo.com Sent: Monday, August 29, 2011 12:19 PM To: tmic-list@eskimo.com Subject: [TMIC] gone to facebook Hi, Since it seems most of the tmic group has gone to facebook,could you cc copies of emails to me? I miss you! Cheryl
Re: [TMIC] gone to facebook
I have a Facebook account, but don't know anything about a TMIC account on Facebook. Wouldn't even know how to do it. What's wrong with this, anyway? Facebook just means you have to wait longer for answers and y0u get all this other stuff like, "Anna has commented on her new picture," "John just commented on Anna's comment about her new profile picture," and other useless nonsense. Hey, I miss you all. It's tough out here for all of us. Fine to go Facebook but whey eliminate the old working thing at the same time? Dalton From: Janice Nichols Date: Mon, 29 Aug 2011 16:44:45 -0500 To: , Subject: Re: [TMIC] gone to facebook Resent-From: Resent-Date: Mon, 29 Aug 2011 14:45:22 -0700 Cheryl, How are you doing? I am still here, just haven¹t been on the computer much.Am thinking of going to facebook, but will not give up the TMIC website. Janice From: rn11...@yahoo.com Sent: Monday, August 29, 2011 12:19 PM To: tmic-list@eskimo.com Subject: [TMIC] gone to facebook Hi, Since it seems most of the tmic group has gone to facebook,could you cc copies of emails to me? I miss you! Cheryl
Re: [TMIC] gone to facebook
I like this better myself. facebook broadens the spectrum but i reALLY DONT NEED THAT. eeps! caps fatfingered --- On Mon, 8/29/11, Dalton Garis wrote: From: Dalton Garis Subject: Re: [TMIC] gone to facebook To: "Janice Nichols" , rn11...@yahoo.com, tmic-list@eskimo.com Date: Monday, August 29, 2011, 10:35 PM I have a Facebook account, but don't know anything about a TMIC account on Facebook. Wouldn't even know how to do it. What's wrong with this, anyway? Facebook just means you have to wait longer for answers and y0u get all this other stuff like, "Anna has commented on her new picture," "John just commented on Anna's comment about her new profile picture," and other useless nonsense. Hey, I miss you all. It's tough out here for all of us. Fine to go Facebook but whey eliminate the old working thing at the same time? Dalton From: Janice Nichols Date: Mon, 29 Aug 2011 16:44:45 -0500 To: , Subject: Re: [TMIC] gone to facebook Resent-From: Resent-Date: Mon, 29 Aug 2011 14:45:22 -0700 Cheryl,How are you doing? I am still here, just haven’t been on the computer much. Am thinking of going to facebook, but will notgive up the TMIC website.Janice From: rn11...@yahoo.com Sent: Monday, August 29, 2011 12:19 PMTo: tmic-list@eskimo.com Subject: [TMIC] gone to facebook Hi, Since it seems most of the tmic group has gone to facebook,could you cc copies of emails to me? I miss you! Cheryl
Re: [TMIC] gone to facebook
Dalton, Janice, Cheryl, John ~~ I am right here with you all. I love the TMIC ~ this is where everything good started for me 9 years ago. This is where I learned I was not all alone in this foreign body. I knew nothing about TM, my friends and family knew nothing; but this is where they came to learn what it is, what to expect and how to be supportive ~ after all, they didn't know any more than I did about this mystery disease/disorder. Facebook is fine for a lot of things, even to visit with our fellow TMers, but "this" is home. just my 2 cents worth, Linda in Eagle, ID - Original Message - From: Dalton Garis<mailto:malugss...@gmail.com> To: Janice Nichols<mailto:jan...@centurytel.net> ; rn11...@yahoo.com<mailto:rn11...@yahoo.com> ; tmic-list@eskimo.com<mailto:tmic-list@eskimo.com> Sent: Monday, August 29, 2011 8:35 PM Subject: Re: [TMIC] gone to facebook I have a Facebook account, but don't know anything about a TMIC account on Facebook. Wouldn't even know how to do it. What's wrong with this, anyway? Facebook just means you have to wait longer for answers and y0u get all this other stuff like, "Anna has commented on her new picture," "John just commented on Anna's comment about her new profile picture," and other useless nonsense. Hey, I miss you all. It's tough out here for all of us. Fine to go Facebook but whey eliminate the old working thing at the same time? Dalton From: Janice Nichols mailto:jan...@centurytel.net>> Date: Mon, 29 Aug 2011 16:44:45 -0500 To: mailto:rn11...@yahoo.com>>, mailto:tmic-list@eskimo.com>> Subject: Re: [TMIC] gone to facebook Resent-From: mailto:tmic-list@eskimo.com>> Resent-Date: Mon, 29 Aug 2011 14:45:22 -0700 Cheryl, How are you doing? I am still here, just haven't been on the computer much.Am thinking of going to facebook, but will not give up the TMIC website. Janice From: rn11...@yahoo.com<mailto:rn11...@yahoo.com> Sent: Monday, August 29, 2011 12:19 PM To: tmic-list@eskimo.com<mailto:tmic-list@eskimo.com> Subject: [TMIC] gone to facebook Hi, Since it seems most of the tmic group has gone to facebook,could you cc copies of emails to me? I miss you! Cheryl
Re: [TMIC] gone to facebook
*Hi Linda et all, I'm still here with ya'll, but I do have the Facebook along with this. And I wouldn't dream of leaving this list either. This is where it all began, and it's like a warm blanket. I don't post much as it's always the same, day after day; nothing to report. But that has a good side I guess lol. Take care and God Bless! Peace, Bernie in burning Texas *
RE: [TMIC] gone to facebook
Hey guys, I too am on facebook, but to me this seems more appropriate. I get honest and open discussions from you guys and that's something I need to have. On facebook your privacy is not kept and sometimes things I'll say on here aren't things that i would share naturally with family or friends that don't understand TM and the life that I am forced to endure. Also, with my current situation, going through a messy divorce and traveling by myself for the last few months, I'd like to be as discreet about my life as possible. I can only find solace here and you guys give more value to my life than the people I'd always pray would understand instead of thinking of me as a burden. So, I'm always going to be right here.where I found the most beautiful bunch of people on the planet. Jeron, from Planet Earth! Date: Tue, 30 Aug 2011 04:03:18 -0500 From: bpe...@austin.rr.com To: cherp...@msn.com; tmic-list@eskimo.com Subject: Re: [TMIC] gone to facebook Hi Linda et all, I'm still here with ya'll, but I do have the Facebook along with this. And I wouldn't dream of leaving this list either. This is where it all began, and it's like a warm blanket. I don't post much as it's always the same, day after day; nothing to report. But that has a good side I guess lol. Take care and God Bless! Peace, Bernie in burning Texas
Re: [TMIC] gone to facebook
Nobody is talking about abandoning the TMIC site, me neither...;>)
It's just that I get only one or two e-postings from TMIC a day (if that) and
50+ from TMFolks.
Go figger.
All the old timers (you know who you are) I've e-rresponded with since
1997rarely do I see a post from them.
BobbyJim
- Original Message -
From: L T CHERPESKI
To: Janice Nichols ; rn11...@yahoo.com ; tmic-list@eskimo.com ; Dalton Garis
Sent: Monday, August 29, 2011 10:28 PM
Subject: Re: [TMIC] gone to facebook
Dalton, Janice, Cheryl, John ~~ I am right here with you all. I love the
TMIC ~ this is where everything good started for me 9 years ago. This is where
I learned I was not all alone in this foreign body. I knew nothing about TM,
my friends and family knew nothing; but this is where they came to learn what
it is, what to expect and how to be supportive ~ after all, they didn't know
any more than I did about this mystery disease/disorder.
Facebook is fine for a lot of things, even to visit with our fellow TMers,
but "this" is home.
just my 2 cents worth, Linda in Eagle, ID
- Original Message -
From: Dalton Garis
To: Janice Nichols ; rn11...@yahoo.com ; tmic-list@eskimo.com
Sent: Monday, August 29, 2011 8:35 PM
Subject: Re: [TMIC] gone to facebook
I have a Facebook account, but don't know anything about a TMIC account on
Facebook. Wouldn't even know how to do it.
What's wrong with this, anyway? Facebook just means you have to wait
longer for answers and y0u get all this other stuff like, "Anna has commented
on her new picture," "John just commented on Anna's comment about her new
profile picture," and other useless nonsense.
Hey, I miss you all. It's tough out here for all of us. Fine to go
Facebook but whey eliminate the old working thing at the same time?
Dalton
From: Janice Nichols
Date: Mon, 29 Aug 2011 16:44:45 -0500
To: ,
Subject: Re: [TMIC] gone to facebook
Resent-From:
Resent-Date: Mon, 29 Aug 2011 14:45:22 -0700
Cheryl,
How are you doing? I am still here, just haven't been on the computer
much.Am thinking of going to facebook, but will not
give up the TMIC website.
Janice
From: rn11...@yahoo.com
Sent: Monday, August 29, 2011 12:19 PM
To: tmic-list@eskimo.com
Subject: [TMIC] gone to facebook
Hi,
Since it seems most of the tmic group has gone to facebook,could you cc
copies of emails to me? I miss you!
Cheryl
Re: [TMIC] gone to facebook
Hello all, I'm still a member here too...and read every single post that comes from this group and this group still has it's place in the TM Community...because for some, this is the type of correspondence that they are comfortable with... ButI started the TM Folks group on Facebook first of all, for those of us that were already on Facebook and wanted to connect that wayand second, is because the majority of the "newbies" that are younger and also the ones that are now coming on board.generally look to Facebook for a group that is pertinent to them... I have had literally dozens of people that have had TM for a long time...and have never reached out to any of the TM communities before...for whatever reason.., and now they have decided to reach out and they have gone to Facebook to look for others... When I made the TM Folks groupI made it so that it is a "closed" group...meaning that none of the posts that are made in there, can be seen by anyone other than the other membersso that assures us some privacy and saves some of our dignity toobecause some of the things that are talked about, are obviously, of a very personal nature. Other people within Facebook can search for 'Transverse Myelitis" and the group will appear,(except for the posts) but a person has to request to be allowed into the group, they can't just join... The one other thing that I like about the Facebook group...is that you can chat with others that are within the group.if there are others, that are online and they are on your "friends" list...you have a private group chat box, and you can chat away. The one drawback as Bobberino said...is that you do get inundated with emails...every time someone posts, an email gets sent out... but, that can be changed, by editing your settings in the groupIt's a very easy thing to do... Anyway, the group is extremely active...there is always something going on, information being put out there...or whatever... I didn't mean this to be a "sales pitch" for the group...I just wanted to explain so that folks understand a little more about the Facebook group... As I said, this group here still has it's placeand hopefully always will...because there are those that just feel more comfortable with this type of format... and I'll continue to be a member for as long as this group stays around too... Mindy Edwards-King and Greg Sapp are my co-admins on there... Thanks all and keep posting here... Kevin Weilacher N.E. Ohio (Canton) From: Jeron Rampersad To: bpe...@austin.rr.com; cherp...@msn.com; tmic-list@eskimo.com Sent: Tuesday, August 30, 2011 7:51 AM Subject: RE: [TMIC] gone to facebook Hey guys, I too am on facebook, but to me this seems more appropriate. I get honest and open discussions from you guys and that's something I need to have. On facebook your privacy is not kept and sometimes things I'll say on here aren't things that i would share naturally with family or friends that don't understand TM and the life that I am forced to endure. Also, with my current situation, going through a messy divorce and traveling by myself for the last few months, I'd like to be as discreet about my life as possible. I can only find solace here and you guys give more value to my life than the people I'd always pray would understand instead of thinking of me as a burden. So, I'm always going to be right here.where I found the most beautiful bunch of people on the planet. Jeron, from Planet Earth! Date: Tue, 30 Aug 2011 04:03:18 -0500 From: bpe...@austin.rr.com To: cherp...@msn.com; tmic-list@eskimo.com Subject: Re: [TMIC] gone to facebook Hi Linda et all, I'm still here with ya'll, but I do have the Facebook along with this. And I wouldn't dream of leaving this list either. This is where it all began, and it's like a warm blanket. I don't post much as it's always the same, day after day; nothing to report. But that has a good side I guess lol. Take care and God Bless! Peace, Bernie in burning Texas
Re: [TMIC] gone to facebook
Jeron, I enjoy seeing your posts on facebook, but you are right, this is the best place for TM conversations. This is our TM family and I find it a great support. - Roger in Kennewick, WA - Original Message - From: "Jeron Rampersad" To: bpe...@austin.rr.com, cherp...@msn.com, tmic-list@eskimo.com Sent: Tuesday, August 30, 2011 4:51:37 AM Subject: RE: [TMIC] gone to facebook Hey guys, I too am on facebook, but to me this seems more appropriate. I get honest and open discussions from you guys and that's something I need to have. On facebook your privacy is not kept and sometimes things I'll say on here aren't things that i would share naturally with family or friends that don't understand TM and the life that I am forced to endure. Also, with my current situation, going through a messy divorce and traveling by myself for the last few months, I'd like to be as discreet about my life as possible. I can only find solace here and you guys give more value to my life than the people I'd always pray would understand instead of thinking of me as a burden. So, I'm always going to be right here.where I found the most beautiful bunch of people on the planet. Jeron, from Planet Earth! Date: Tue, 30 Aug 2011 04:03:18 -0500 From: bpe...@austin.rr.com To: cherp...@msn.com; tmic-list@eskimo.com Subject: Re: [TMIC] gone to facebook Hi Linda et all, I'm still here with ya'll, but I do have the Facebook along with this. And I wouldn't dream of leaving this list either. This is where it all began, and it's like a warm blanket. I don't post much as it's always the same, day after day; nothing to report. But that has a good side I guess lol. Take care and God Bless! Peace, Bernie in burning Texas
Re: [TMIC] gone to facebook
I'm still here, too. I don't comment as much -- if someone else has already said what I might have said, then I don't usually chime in. The TMIC as a whole is not nearly as active as it was when I first joined back some...oh, 14-15 years ago. I'm coming up on my 16th "anniversary" with TM on Sept. 1. I think one reason is that there is a lot of information available online now, and that's a good thing. When I first contracted TM, I didn't have a computer, and the local library had a two-page spread in one medical book, and that was it. TM was the first thing I searched for when we did get a computer, and this group was the first concrete link I found. It was a godsend, really, to have somewhere to post questions and compare notes. But now that so much more information is online, people may be getting their questions answered in their own research. And I think, too, for some of us who have been here a while, we've gotten our basic questions answered (even if the answer in some cases is that there is no known answer), so there's not as much to talk about. The main reason I stay on now is to be of help if anyone else has a question or just needs some empathy and support. Too, as Roger said, some have gone on to other means of communication now. I think the TM message board or bulletin board was pretty active for a while, and now Facebook is where many people go to interact online. I was in the group there for a while, but left -- the 50+ messages Bobby Jim referred to were just too much for me. When I first came online, TMIC was about the only thing I "did" online besides an occasional e-mail to family who had e-mail. But now nearly everybody has e-mail, many friends are on Facebook, I've found several blogs I read as well as news and entertainment -- now I have to be careful not to let computer time eat up too much of my day. And I don't know, but I think that may be the biggest reason some folks aren't as active. When I send out birthday greetings, if an e-mail bounces back to me, I'll make a note of it so I don't post that non-working e-mail again next time, but I don't delete the name in case they come back. It is sad every month to see that there are almost as many inactive names there as there are active now. I miss hearing from some of those folks and wonder how they are. But I truly think as long as there is a TMIC, there will be some of us here. We just need to wave every now and then. :-) Barbara H. http://barbarah.wordpress.com
Re: [TMIC] gone to facebook
Thanks Kevin. You can explain it so much better than I ever could. Before these groups, I never checked my FB account, but now I do everyday. At first, I was also loaded with e-mails from FB, sometime 100 per day. My daughter then changed my settings for me, and now I only get the e-mails from our TMIC group, but there have been so few that I figured most went to FB. Our FB groups have expanded so much with so many new and younger people, and you get such a nice feeling to be able to help all the newbies with information. I for one am so thankful that you and Greg had the idea to set up the FB group. Patti -- Wisconsin On Tue, Aug 30, 2011 at 9:06 AM, kevin weilacher wrote: > Hello all, > > I'm still a member here too...and read every single post that comes from > this group > and this group still has it's place in the TM Community...because for some, > this is the type of correspondence that they are comfortable with... > ButI started the TM Folks group on Facebook first of all, for those of > us that were already on Facebook and wanted to connect that wayand > second, is because the majority of the "newbies" that are younger and also > the ones that are now coming on board.generally look to Facebook for a > group that is pertinent to them... > I have had literally dozens of people that have had TM for a long > time...and have never reached out to any of the TM communities before...for > whatever reason.., and now they have decided to reach out and they have gone > to Facebook to look for others... > When I made the TM Folks groupI made it so that it is a "closed" > group...meaning that none of the posts that are made in there, can be seen > by anyone other than the other membersso that assures us some privacy > and saves some of our dignity toobecause some of the things that are > talked about, are obviously, of a very personal nature. > Other people within Facebook can search for 'Transverse Myelitis" and the > group will appear,(except for the posts) but a person has to request to be > allowed into the group, they can't just join... > The one other thing that I like about the Facebook group...is that you can > chat with others that are within the group.if there are others, that are > online and they are on your "friends" list...you have a private group chat > box, and you can chat away. > The one drawback as Bobberino said...is that you do get inundated with > emails...every time someone posts, an email gets sent out... > but, that can be changed, by editing your settings in the groupIt's a > very easy thing to do... > Anyway, the group is extremely active...there is always something going on, > information being put out there...or whatever... > I didn't mean this to be a "sales pitch" for the group...I just wanted to > explain so that folks understand a little more about the Facebook group... > As I said, this group here still has it's placeand hopefully always > will...because there are those that just feel more comfortable with this > type of format... > and I'll continue to be a member for as long as this group stays around > too... > > Mindy Edwards-King and Greg Sapp are my co-admins on there... > > Thanks all > and keep posting here... > > Kevin Weilacher > N.E. Ohio (Canton) > > -- > *From:* Jeron Rampersad > *To:* bpe...@austin.rr.com; cherp...@msn.com; tmic-list@eskimo.com > *Sent:* Tuesday, August 30, 2011 7:51 AM > *Subject:* RE: [TMIC] gone to facebook > > > Hey guys, > I too am on facebook, but to me this seems more appropriate. I get honest > and open discussions from you guys and that's something I need to have. On > facebook your privacy is not kept and sometimes things I'll say on here > aren't things that i would share naturally with family or friends that don't > understand TM and the life that I am forced to endure. Also, with my current > situation, going through a messy divorce and traveling by myself for the > last few months, I'd like to be as discreet about my life as possible. I can > only find solace here and you guys give more value to my life than the > people I'd always pray would understand instead of thinking of me as a > burden. So, I'm always going to be right here.where I found the most > beautiful bunch of people on the planet. > Jeron, from Planet Earth! > > -- > Date: Tue, 30 Aug 2011 04:03:18 -0500 > From: bpe...@austin.rr.com > To: cherp...@msn.com; tmic-list@eskimo.com > Subject: Re: [TMIC] gone to facebook > > *Hi Linda et all, > I'm still here with ya'll, but I do have the Facebook along with this. > And I wouldn't dream of leaving this list either. This is where it all > began, and it's like a warm blanket. I don't post much as it's always the > same, day after day; nothing to report. But that has a good side I guess > lol. Take care and God Bless! > Peace, > Bernie in burning Texas > * > > >
Re: [TMIC] gone to facebook
How do I find the group on Facebook? Like what exactly do I type in but I don't know how to find you on facebook. Jane/Splendora Tx In a message dated 8/30/2011 9:07:32 A.M. Central Daylight Time, hwyfli...@yahoo.com writes: Hello all, I'm still a member here too...and read every single post that comes from this group and this group still has it's place in the TM Community...because for some, this is the type of correspondence that they are comfortable with... ButI started the TM Folks group on Facebook first of all, for those of us that were already on Facebook and wanted to connect that wayand second, is because the majority of the "newbies" that are younger and also the ones that are now coming on board.generally look to Facebook for a group that is pertinent to them... I have had literally dozens of people that have had TM for a long time...and have never reached out to any of the TM communities before...for whatever reason.., and now they have decided to reach out and they have gone to Facebook to look for others... When I made the TM Folks groupI made it so that it is a "closed" group...meaning that none of the posts that are made in there, can be seen by anyone other than the other membersso that assures us some privacy and saves some of our dignity toobecause some of the things that are talked about, are obviously, of a very personal nature. Other people within Facebook can search for 'Transverse Myelitis" and the group will appear,(except for the posts) but a person has to request to be allowed into the group, they can't just join... The one other thing that I like about the Facebook group...is that you can chat with others that are within the group.if there are others, that are online and they are on your "friends" list...you have a private group chat box, and you can chat away. The one drawback as Bobberino said...is that you do get inundated with emails...every time someone posts, an email gets sent out... but, that can be changed, by editing your settings in the groupIt's a very easy thing to do... Anyway, the group is extremely active...there is always something going on, information being put out there...or whatever... I didn't mean this to be a "sales pitch" for the group...I just wanted to explain so that folks understand a little more about the Facebook group... As I said, this group here still has it's placeand hopefully always wi ll...because there are those that just feel more comfortable with this type of format... and I'll continue to be a member for as long as this group stays around too... Mindy Edwards-King and Greg Sapp are my co-admins on there... Thanks all and keep posting here... Kevin Weilacher N.E. Ohio (Canton) From: Jeron Rampersad To: bpe...@austin.rr.com; cherp...@msn.com; tmic-list@eskimo.com Sent: Tuesday, August 30, 2011 7:51 AM Subject: RE: [TMIC] gone to facebook Hey guys, I too am on facebook, but to me this seems more appropriate. I get honest and open discussions from you guys and that's something I need to have. On facebook your privacy is not kept and sometimes things I'll say on here aren't things that i would share naturally with family or friends that don't understand TM and the life that I am forced to endure. Also, with my current situation, going through a messy divorce and traveling by myself for the last few months, I'd like to be as discreet about my life as possible. I can only find solace here and you guys give more value to my life than the people I'd always pray would understand instead of thinking of me as a burden. So, I'm always going to be right here.where I found the most beautiful bunch of people on the planet. Jeron, from Planet Earth! ____ Date: Tue, 30 Aug 2011 04:03:18 -0500 From: bpe...@austin.rr.com To: cherp...@msn.com; tmic-list@eskimo.com Subject: Re: [TMIC] gone to facebook Hi Linda et all, I'm still here with ya'll, but I do have the Facebook along with this. And I wouldn't dream of leaving this list either. This is where it all began, and it's like a warm blanket. I don't post much as it's always the same, day after day; nothing to report. But that has a good side I guess lol. Take care and God Bless! Peace, Bernie in burning Texas
Re: [TMIC] gone to facebook
Jane if are already on facebook all you need to do is have someone already on friend you and then add you to our private group. To find you on FB, I need to know how your name is listed, and where you live so I can find you. I can send you a request to be friends and when you accept it I then can add you to both groups. You can only join when someone already in the group adds you to it. Patti - Wisconsin On Tue, Aug 30, 2011 at 10:27 AM, wrote: > ** > How do I find the group on Facebook? Like what exactly do I type in but I > don't know how to find you on facebook. > > Jane/Splendora Tx > > > In a message dated 8/30/2011 9:07:32 A.M. Central Daylight Time, > hwyfli...@yahoo.com writes: > > Hello all, > > I'm still a member here too...and read every single post that comes from > this group > and this group still has it's place in the TM Community...because for some, > this is the type of correspondence that they are comfortable with... > ButI started the TM Folks group on Facebook first of all, for those of > us that were already on Facebook and wanted to connect that wayand > second, is because the majority of the "newbies" that are younger and also > the ones that are now coming on board.generally look to Facebook for a > group that is pertinent to them... > I have had literally dozens of people that have had TM for a long > time...and have never reached out to any of the TM communities before...for > whatever reason.., and now they have decided to reach out and they have gone > to Facebook to look for others... > When I made the TM Folks groupI made it so that it is a "closed" > group...meaning that none of the posts that are made in there, can be seen > by anyone other than the other membersso that assures us some privacy > and saves some of our dignity toobecause some of the things that are > talked about, are obviously, of a very personal nature. > Other people within Facebook can search for 'Transverse Myelitis" and the > group will appear,(except for the posts) but a person has to request to be > allowed into the group, they can't just join... > The one other thing that I like about the Facebook group...is that you can > chat with others that are within the group.if there are others, that are > online and they are on your "friends" list...you have a private group chat > box, and you can chat away. > The one drawback as Bobberino said...is that you do get inundated with > emails...every time someone posts, an email gets sent out... > but, that can be changed, by editing your settings in the groupIt's a > very easy thing to do... > Anyway, the group is extremely active...there is always something going on, > information being put out there...or whatever... > I didn't mean this to be a "sales pitch" for the group...I just wanted to > explain so that folks understand a little more about the Facebook group... > As I said, this group here still has it's placeand hopefully always > will...because there are those that just feel more comfortable with this > type of format... > and I'll continue to be a member for as long as this group stays around > too... > > Mindy Edwards-King and Greg Sapp are my co-admins on there... > > Thanks all > and keep posting here... > > Kevin Weilacher > N.E. Ohio (Canton) > > -- > *From:* Jeron Rampersad > *To:* bpe...@austin.rr.com; cherp...@msn.com; tmic-list@eskimo.com > *Sent:* Tuesday, August 30, 2011 7:51 AM > *Subject:* RE: [TMIC] gone to facebook > > > Hey guys, > I too am on facebook, but to me this seems more appropriate. I get honest > and open discussions from you guys and that's something I need to have. On > facebook your privacy is not kept and sometimes things I'll say on here > aren't things that i would share naturally with family or friends that don't > understand TM and the life that I am forced to endure. Also, with my current > situation, going through a messy divorce and traveling by myself for the > last few months, I'd like to be as discreet about my life as possible. I can > only find solace here and you guys give more value to my life than the > people I'd always pray would understand instead of thinking of me as a > burden. So, I'm always going to be right here.where I found the most > beautiful bunch of people on the planet. > Jeron, from Planet Earth! > > -- > Date: Tue, 30 Aug 2011 04:03:18 -0500 > From: bpe...@austin.rr.com > To: cherp...@msn.com; tmic-list@eskimo.com > Subject: Re: [TMIC] gone to facebook > > *Hi Linda et all, > I'm still here with ya'll, but I do have the Facebook along with this. > And I wouldn't dream of leaving this list either. This is where it all > began, and it's like a warm blanket. I don't post much as it's always the > same, day after day; nothing to report. But that has a good side I guess > lol. Take care and God Bless! > Peace, > Bernie in burning Texas > * > > >
Re: [TMIC] gone to facebook
Barbara, You were one of my first "friends" online. I too have had TM for 16-17 years and now I have mononeutritis multiplex, another autoimmune condition that effects peripheral nerves. Knowing that I have friends out there, even if we don't post that often, means a great deal to me. - Roger in Kennewick, WA - Original Message - From: "Barbara H." To: "kevin weilacher" Cc: "Jeron Rampersad" , bpe...@austin.rr.com, cherp...@msn.com, tmic-list@eskimo.com Sent: Tuesday, August 30, 2011 7:44:02 AM Subject: Re: [TMIC] gone to facebook I'm still here, too. I don't comment as much -- if someone else has already said what I might have said, then I don't usually chime in. The TMIC as a whole is not nearly as active as it was when I first joined back some...oh, 14-15 years ago. I'm coming up on my 16th "anniversary" with TM on Sept. 1. I think one reason is that there is a lot of information available online now, and that's a good thing. When I first contracted TM, I didn't have a computer, and the local library had a two-page spread in one medical book, and that was it. TM was the first thing I searched for when we did get a computer, and this group was the first concrete link I found. It was a godsend, really, to have somewhere to post questions and compare notes. But now that so much more information is online, people may be getting their questions answered in their own research. And I think, too, for some of us who have been here a while, we've gotten our basic questions answered (even if the answer in some cases is that there is no known answer), so there's not as much to talk about. The main reason I stay on now is to be of help if anyone else has a question or just needs some empathy and support. Too, as Roger said, some have gone on to other means of communication now. I think the TM message board or bulletin board was pretty active for a while, and now Facebook is where many people go to interact online. I was in the group there for a while, but left -- the 50+ messages Bobby Jim referred to were just too much for me. When I first came online, TMIC was about the only thing I "did" online besides an occasional e-mail to family who had e-mail. But now nearly everybody has e-mail, many friends are on Facebook, I've found several blogs I read as well as news and entertainment -- now I have to be careful not to let computer time eat up too much of my day. And I don't know, but I think that may be the biggest reason some folks aren't as active. When I send out birthday greetings, if an e-mail bounces back to me, I'll make a note of it so I don't post that non-working e-mail again next time, but I don't delete the name in case they come back. It is sad every month to see that there are almost as many inactive names there as there are active now. I miss hearing from some of those folks and wonder how they are. But I truly think as long as there is a TMIC, there will be some of us here. We just need to wave every now and then. :-) Barbara H. http://barbarah.wordpress.com
Re: [TMIC] gone to facebook
Wow!!!Nice to see all of this sudden activity at the TMIC list. seems to me that y'all were hiding because of the crappy weather. Nice to hear from 'some many' again. Yep, we're ones of the earlier members. Me missus had her first attack on 97 September.How time flies. regards, Bobberino Original Message - From: "Roger & Terese Pratt" To: "Barbara H." Cc: "Jeron Rampersad" ; ; ; ; "kevin weilacher" Sent: Tuesday, August 30, 2011 10:47 AM Subject: Re: [TMIC] gone to facebook Barbara, You were one of my first "friends" online. I too have had TM for 16-17 years and now I have mononeutritis multiplex, another autoimmune condition that effects peripheral nerves. Knowing that I have friends out there, even if we don't post that often, means a great deal to me. - Roger in Kennewick, WA - Original Message - From: "Barbara H." To: "kevin weilacher" Cc: "Jeron Rampersad" , bpe...@austin.rr.com, cherp...@msn.com, tmic-list@eskimo.com Sent: Tuesday, August 30, 2011 7:44:02 AM Subject: Re: [TMIC] gone to facebook I'm still here, too. I don't comment as much -- if someone else has already said what I might have said, then I don't usually chime in. The TMIC as a whole is not nearly as active as it was when I first joined back some...oh, 14-15 years ago. I'm coming up on my 16th "anniversary" with TM on Sept. 1. I think one reason is that there is a lot of information available online now, and that's a good thing. When I first contracted TM, I didn't have a computer, and the local library had a two-page spread in one medical book, and that was it. TM was the first thing I searched for when we did get a computer, and this group was the first concrete link I found. It was a godsend, really, to have somewhere to post questions and compare notes. But now that so much more information is online, people may be getting their questions answered in their own research. And I think, too, for some of us who have been here a while, we've gotten our basic questions answered (even if the answer in some cases is that there is no known answer), so there's not as much to talk about. The main reason I stay on now is to be of help if anyone else has a question or just needs some empathy and support. Too, as Roger said, some have gone on to other means of communication now. I think the TM message board or bulletin board was pretty active for a while, and now Facebook is where many people go to interact online. I was in the group there for a while, but left -- the 50+ messages Bobby Jim referred to were just too much for me. When I first came online, TMIC was about the only thing I "did" online besides an occasional e-mail to family who had e-mail. But now nearly everybody has e-mail, many friends are on Facebook, I've found several blogs I read as well as news and entertainment -- now I have to be careful not to let computer time eat up too much of my day. And I don't know, but I think that may be the biggest reason some folks aren't as active. When I send out birthday greetings, if an e-mail bounces back to me, I'll make a note of it so I don't post that non-working e-mail again next time, but I don't delete the name in case they come back. It is sad every month to see that there are almost as many inactive names there as there are active now. I miss hearing from some of those folks and wonder how they are. But I truly think as long as there is a TMIC, there will be some of us here. We just need to wave every now and then. :-) Barbara H. http://barbarah.wordpress.com
Re: [TMIC] gone to facebook
well Im not gonna dwell on 14 years,wow! the past 3 years have been the most wonderful years of my life. never have i had so much to wonder about! ergo,wonderful. --- On Tue, 8/30/11, bobberino wrote: From: bobberino Subject: Re: [TMIC] gone to facebook To: "Roger & Terese Pratt" , "Barbara H." Cc: "Jeron Rampersad" , bpe...@austin.rr.com, cherp...@msn.com, tmic-list@eskimo.com, "kevin weilacher" Date: Tuesday, August 30, 2011, 2:25 PM Wow!!! Nice to see all of this sudden activity at the TMIC list. seems to me that y'all were hiding because of the crappy weather. Nice to hear from 'some many' again. Yep, we're ones of the earlier members. Me missus had her first attack on 97 September. How time flies. regards, Bobberino Original Message - From: "Roger & Terese Pratt" To: "Barbara H." Cc: "Jeron Rampersad" ; ; ; ; "kevin weilacher" Sent: Tuesday, August 30, 2011 10:47 AM Subject: Re: [TMIC] gone to facebook > Barbara, You were one of my first "friends" online. I too have had TM for > 16-17 years and now I have mononeutritis multiplex, another autoimmune > condition that effects peripheral nerves. Knowing that I have friends out > there, even if we don't post that often, means a great deal to me. - Roger in > Kennewick, WA > > - Original Message - > From: "Barbara H." > To: "kevin weilacher" > Cc: "Jeron Rampersad" , bpe...@austin.rr.com, > cherp...@msn.com, tmic-list@eskimo.com > Sent: Tuesday, August 30, 2011 7:44:02 AM > Subject: Re: [TMIC] gone to facebook > > I'm still here, too. I don't comment as much -- if someone else has already > said what I might have said, then I don't usually chime in. The TMIC as a > whole is not nearly as active as it was when I first joined back some...oh, > 14-15 years ago. I'm coming up on my 16th "anniversary" with TM on Sept. 1. I > think one reason is that there is a lot of information available online now, > and that's a good thing. When I first contracted TM, I didn't have a > computer, and the local library had a two-page spread in one medical book, > and that was it. TM was the first thing I searched for when we did get a > computer, and this group was the first concrete link I found. It was a > godsend, really, to have somewhere to post questions and compare notes. But > now that so much more information is online, people may be getting their > questions answered in their own research. > > And I think, too, for some of us who have been here a while, we've gotten our > basic questions answered (even if the answer in some cases is that there is > no known answer), so there's not as much to talk about. The main reason I > stay on now is to be of help if anyone else has a question or just needs some > empathy and support. > > Too, as Roger said, some have gone on to other means of communication now. I > think the TM message board or bulletin board was pretty active for a while, > and now Facebook is where many people go to interact online. I was in the > group there for a while, but left -- the 50+ messages Bobby Jim referred to > were just too much for me. When I first came online, TMIC was about the only > thing I "did" online besides an occasional e-mail to family who had e-mail. > But now nearly everybody has e-mail, many friends are on Facebook, I've found > several blogs I read as well as news and entertainment -- now I have to be > careful not to let computer time eat up too much of my day. And I don't know, > but I think that may be the biggest reason some folks aren't as active. > > When I send out birthday greetings, if an e-mail bounces back to me, I'll > make a note of it so I don't post that non-working e-mail again next time, > but I don't delete the name in case they come back. It is sad every month to > see that there are almost as many inactive names there as there are active > now. I miss hearing from some of those folks and wonder how they are. > > But I truly think as long as there is a TMIC, there will be some of us here. > We just need to wave every now and then. :-) > > Barbara H. > http://barbarah.wordpress.com >
Re: [TMIC] gone to facebook
it is quite odd when you look at the size of the directory we get compaired to the few people we have met in these groups.Im sure some dont know and some dont want to know. --- On Tue, 8/30/11, kevin weilacher wrote: From: kevin weilacher Subject: Re: [TMIC] gone to facebook To: "Jeron Rampersad" , "bpe...@austin.rr.com" , "cherp...@msn.com" , "tmic-list@eskimo.com" Date: Tuesday, August 30, 2011, 10:06 AM Hello all, I'm still a member here too...and read every single post that comes from this groupand this group still has it's place in the TM Community...because for some, this is the type of correspondence that they are comfortable with...ButI started the TM Folks group on Facebook first of all, for those of us that were already on Facebook and wanted to connect that wayand second, is because the majority of the "newbies" that are younger and also the ones that are now coming on board.generally look to Facebook for a group that is pertinent to them... I have had literally dozens of people that have had TM for a long time...and have never reached out to any of the TM communities before...for whatever reason.., and now they have decided to reach out and they have gone to Facebook to look for others... When I made the TM Folks groupI made it so that it is a "closed" group...meaning that none of the posts that are made in there, can be seen by anyone other than the other membersso that assures us some privacy and saves some of our dignity toobecause some of the things that are talked about, are obviously, of a very personal nature. Other people within Facebook can search for 'Transverse Myelitis" and the group will appear,(except for the posts) but a person has to request to be allowed into the group, they can't just join... The one other thing that I like about the Facebook group...is that you can chat with others that are within the group.if there are others, that are online and they are on your "friends" list...you have a private group chat box, and you can chat away. The one drawback as Bobberino said...is that you do get inundated with emails...every time someone posts, an email gets sent out... but, that can be changed, by editing your settings in the groupIt's a very easy thing to do... Anyway, the group is extremely active...there is always something going on, information being put out there...or whatever...I didn't mean this to be a "sales pitch" for the group...I just wanted to explain so that folks understand a little more about the Facebook group... As I said, this group here still has it's placeand hopefully always will...because there are those that just feel more comfortable with this type of format...and I'll continue to be a member for as long as this group stays around too... Mindy Edwards-King and Greg Sapp are my co-admins on there... Thanks alland keep posting here... Kevin WeilacherN.E. Ohio (Canton) From: Jeron Rampersad To: bpe...@austin.rr.com; cherp...@msn.com; tmic-list@eskimo.com Sent: Tuesday, August 30, 2011 7:51 AM Subject: RE: [TMIC] gone to facebook Hey guys, I too am on facebook, but to me this seems more appropriate. I get honest and open discussions from you guys and that's something I need to have. On facebook your privacy is not kept and sometimes things I'll say on here aren't things that i would share naturally with family or friends that don't understand TM and the life that I am forced to endure. Also, with my current situation, going through a messy divorce and traveling by myself for the last few months, I'd like to be as discreet about my life as possible. I can only find solace here and you guys give more value to my life than the people I'd always pray would understand instead of thinking of me as a burden. So, I'm always going to be right here.where I found the most beautiful bunch of people on the planet. Jeron, from Planet Earth! Date: Tue, 30 Aug 2011 04:03:18 -0500 From: bpe...@austin.rr.com To: cherp...@msn.com; tmic-list@eskimo.com Subject: Re: [TMIC] gone to facebook Hi Linda et all, I'm still here with ya'll, but I do have the Facebook along with this. And I wouldn't dream of leaving this list either. This is where it all began, and it's like a warm blanket. I don't post much as it's always the same, day after day; nothing to report. But that has a good side I guess lol. Take care and God Bless! Peace, Bernie in burning Texas
Re: [TMIC] gone to facebook
thats because they are old ,really really old.
;~)
--- On Tue, 8/30/11, bobberino wrote:
From: bobberino
Subject: Re: [TMIC] gone to facebook
To: "L T CHERPESKI" , "Janice Nichols"
, rn11...@yahoo.com, tmic-list@eskimo.com, "Dalton
Garis"
Date: Tuesday, August 30, 2011, 9:05 AM
Nobody is talking about abandoning the TMIC site, me
neither...;>)
It's just that I get only one or two e-postings from TMIC
a day (if that) and 50+ from TMFolks.
Go figger.
All the old timers (you know who you are) I've
e-rresponded with since 1997rarely do I see a post from
them.
BobbyJim
- Original Message -
From:
L T CHERPESKI
To: Janice Nichols ; rn11...@yahoo.com
; tmic-list@eskimo.com ; Dalton Garis
Sent: Monday, August 29, 2011 10:28
PM
Subject: Re: [TMIC] gone to
facebook
Dalton, Janice, Cheryl, John ~~ I am right here
with you all. I love the TMIC ~ this is where everything
good started for me 9 years ago. This is where I learned I
was not all alone in this foreign body. I knew nothing about TM, my
friends and family knew nothing; but this is where they came to learn what it
is, what to expect and how to be supportive ~ after all, they didn't know any
more than I did about this mystery disease/disorder.
Facebook is fine for a lot of things, even to visit with our fellow
TMers, but "this" is home.
just my 2 cents worth, Linda in Eagle, ID
- Original Message -
From: Dalton
Garis
To: Janice Nichols ; rn11...@yahoo.com ; tmic-list@eskimo.com
Sent: Monday, August 29, 2011 8:35
PM
Subject: Re: [TMIC] gone to
facebook
I have a Facebook account, but don't know anything about a TMIC account
on Facebook. Wouldn't even know how to do it.
What's wrong with this, anyway? Facebook just means you have to
wait longer for answers and y0u get all this other stuff like, "Anna has
commented on her new picture," "John just commented on Anna's comment about
her new profile picture," and other useless nonsense.
Hey, I miss you all. It's tough out here for all of us.
Fine to go Facebook but whey eliminate the old working thing at the
same time?
Dalton
From: Janice Nichols
Date: Mon, 29 Aug 2011 16:44:45
-0500
To: ,
Subject: Re: [TMIC] gone to
facebook
Resent-From:
Resent-Date: Mon, 29 Aug 2011 14:45:22
-0700
Cheryl,
How are you doing? I am still
here, just haven't been on the computer much. Am thinking
of going to facebook, but will not
give up the TMIC website.
Janice
From: rn11...@yahoo.com
Sent: Monday, August 29, 2011 12:19 PM
To: tmic-list@eskimo.com
Subject: [TMIC] gone to facebook
Hi,
Since it seems
most of the tmic group has gone to facebook,could you cc copies of emails
to
me? I miss
you!
Cheryl
Re: [TMIC] gone to facebook
Now I understand the old expression of the "curse" of may you have an interesting life.. John, you make me smile! I'm using " too much pain to explain" and wonder'/full -- Love IT! Thanks! Akua --
Re: [TMIC] gone to facebook
Glad you said it, John! I've had the same question! Each year i search for someone near me--- not that i wish this on anyone ever.. it is quite odd when you look at the size of the directory we get compaired to the few people we have met in these groups. Im sure some dont know and some dont want to know. --
Re: [TMIC] gone to facebook
there sure are times i dont want to talk to anyone or be bothered by anyone but if I dont watch it that could lead me to places in my mind that I do not want to be. --- On Tue, 8/30/11, Akua wrote: From: Akua Subject: Re: [TMIC] gone to facebook To: tmic-list@eskimo.com Date: Tuesday, August 30, 2011, 7:46 PM Re: [TMIC] gone to facebook Glad you said it, John! I've had the same question! Each year i search for someone near me--- not that i wish this on anyone ever.. it is quite odd when you look at the size of the directory we get compaired to the few people we have met in these groups. Im sure some dont know and some dont want to know. --
Re: [TMIC] gone to facebook
Hey! We're all back again! Thank you, Cheryl! From: Akua Date: Tue, 30 Aug 2011 19:44:07 -0400 To: Subject: Re: [TMIC] gone to facebook Resent-From: Resent-Date: Tue, 30 Aug 2011 16:45:52 -0700 Now I understand the old expression of the "curse" of may you have an interesting life.. John, you make me smile! I'm using " too much pain to explain" and wonder'/full -- Love IT! Thanks! Akua >> --
Re: [TMIC] gone to facebook
Linda E - Deep East Texas I am still here too, just read & don't post much. Plus this has been a terrible HOT summer for me & I have been doing good just to get around the house. We have had 50+ days straight of over 100 degree weather & had about a week of 105 to 110 temps. The heat has given me constant fatigue & my muscles & nerves are not working as well. Seems like most of my summer has been spent in the recliner. Does anyone know how Jude is doing?
Re: [TMIC] gone to facebook
walking the tight rope. doing something that I am doing on my own. not a suggestion,just a doing. cutting back on my meds. when taking the prescribed meds I hurt. so far in cutting neuronton all the way out and baclofin to a 4th, i still hurt. cut hydrocodone to one in the morning and one in the evening,,still hurt. but I'm not hurting any worse than I was when i was taking the fully prescribed doses. bottom line,,,if i need more or if i think i need more ,,i have it. if i don'tgood for me. even at steep discounts it is hard to buy this stuff . more money for the gumball machine and the little horsey outside the store. --- On Tue, 8/30/11, Dalton Garis wrote: From: Dalton Garis Subject: Re: [TMIC] gone to facebook To: "Akua" , tmic-list@eskimo.com Date: Tuesday, August 30, 2011, 10:22 PM Hey! We're all back again! Thank you, Cheryl! From: Akua Date: Tue, 30 Aug 2011 19:44:07 -0400 To: Subject: Re: [TMIC] gone to facebook Resent-From: Resent-Date: Tue, 30 Aug 2011 16:45:52 -0700 Now I understand the old expression of the "curse" of may you have an interesting life.. John, you make me smile! I'm using " too much pain to explain" and wonder'/full -- Love IT! Thanks! Akua --
Re: [TMIC] gone to facebook
jeepers havent heard from Jude since like back in the winter! --- On Wed, 8/31/11, Linda Egli wrote: From: Linda Egli Subject: Re: [TMIC] gone to facebook To: "tmic-list@eskimo.com" Date: Wednesday, August 31, 2011, 2:26 AM I am still here too, just read & don't post much. Plus this has been a terrible HOT summer for me & I have been doing good just to get around the house. We have had 50+ days straight of over 100 degree weather & had about a week of 105 to 110 temps. The heat has given me constant fatigue & my muscles & nerves are not working as well. Seems like most of my summer has been spent in the recliner. Does anyone know how Jude is doing? Linda E - Deep East Texas
Re: [TMIC] gone to facebook
My husband's family is from around Bismark, N. D. & we have jokingly talked about going up there next summer if it is this hot again. We can be "summer birds" instead of "snow birds". From: "rn11...@yahoo.com" To: Linda Egli Sent: Wednesday, August 31, 2011 12:06 PM Subject: Re: [TMIC] gone to facebook Hi My brother moved to Arizona last fall. He hates the heat,and his wife loves it. He hasn't left his house in weeks! I could never live in a place that hot! I like having 4 seasons. Cheryl in Easthampton,MA From: Linda Egli To: "tmic-list@eskimo.com" Sent: Wednesday, August 31, 2011 2:26 AM Subject: Re: [TMIC] gone to facebook Linda E - Deep East Texas I am still here too, just read & don't post much. Plus this has been a terrible HOT summer for me & I have been doing good just to get around the house. We have had 50+ days straight of over 100 degree weather & had about a week of 105 to 110 temps. The heat has given me constant fatigue & my muscles & nerves are not working as well. Seems like most of my summer has been spent in the recliner. Does anyone know how Jude is doing?
Re: [TMIC] gone to facebook
Hello still here in Ohio where it's still 80. Oddly, I can't feel it's hot until the temp is 70 and I am burning up and yes I too have FB but staying here as well. Ella
