Guest guest Posted July 29, 2004 Report Share Posted July 29, 2004 Thanks, Joleen........hope you have a great day today. Hugs, Darlene > > Darlene, > I totally agree with you !! Cuz there are days, when I just want to read > whats going on... and dont want to bother to answer... but as you said... > WE ALL ARE IN THIS TOGETHER..... we each have our own personal reason and > personal monster we are fighting with every day.... so everyone, take > heart to darlene's words... cuz no one can tell/explain it better than > her! > > take care.. your ALL in my thoughts and daily prayers !! > joleen:) > j:) > >>;nsmods > Subject: Re: Hey Everyone > Date: Thu, 29 Jul 2004 05:03:07 -0500 (EST) > > In regard to all the discussion about someone not getting their emails > answered.........this has happened to me lots of times! I just figured > that everyone was so sick they could not answer and when you get back you > have so many emails to go through that you forget to answer each one. I > know that is what happens in my case. When I am able to answer, I try > to answer each email but when I am sick, I just cannot. When this > happens to me, I just forget it and figure everyone is sick.....do not > let little things such as this bother you....the stress is NOT worth it. > We are all sick here and we DO think of each of you, LOVE each of you, > and PRAY for each of you ---- every day. I would like nothing better > than to be able to see each one of you (including me) be healed of this > sarc monster but this is not possible at this time --- so we must stay > together as a group and fight this sarc monster.... and hopefully someday > soon, there will be a cure or at least some GOOD help! Just my opinion, > but there it is, for what it's worth.......... > Sending lots of hugs and prayers, > Darlene > NS Moderator/Co-Owner > > FREE pop-up blocking with the new MSN Toolbar – get it now! > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > Live Group Chat:- > Mondays & Fridays 10pm EST USA > www.mirc.com download the program, follow instructions find Server Dalnet > then type in /join #NSChat. If you need help please notify at > topdat@... or topdat on yahoo messenger. > > 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 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2004 Report Share Posted July 29, 2004 teresa I love your letter and idea about the christmas card list.... as a new member, I am extremely grateful for finding this support group... i LOVE getting mail (dont we all??) ur right.. it would be cool to get cards from all over the world and especially those with pictures so we can place the face with the name !! i think its a great idea to have daily on-line chats too..i guess the yahoo or mirc can stay open indefintely.. if someone is there... then its their lucky day.. i know chatting is better way to release the tension etc... than posting emails... though they ALL help one way or another... im sure something can be worked out... as you have in the past listed several members AOL, yahoo, msn, instant messages... so that alone it a lifesaver when you need to talk to someone "now"..... I also hope everyone realizes that how much time is devoted to managing these sites and I THANK ALL the moderators for volunteering their time and for keeping up to date .. also Thank EVERYONE out there on this list for all your support and encourging words .... even when we all have those "bad" days.. we like hearing of them.... its nice to know we arent the only ones experiencing some of these symptoms etc.. as teresa said... the group is OPEN to ideas and suggestions... so bring'em on... alright... hopefully got my point acrossed hugs joleen:)j:) Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Hey Everyone Date: Wed, 28 Jul 2004 09:36:28 -0700 , You are awesome! What a wonderful letter! And YES, to your question, I can not take the heat at all!! Same think when I'm out in the heat, I find myself in bed trying to recover too, it just wipes me out, not to mention, I get lesions on my any skin exposed to the sun, too. I haven't head back from anyone, when I post, which I know I don't do to often. I hope I have not offended you, if I did, I am so sorry, and hope you will forgive me. I am doing better and feel so blessed to be doing better, expect for the pain, that seems to be getting worse!! But I am still here for all of you, so please forgive me if I said something to upset you, I love you all, you are my family and support group!! God Bless and Love, Marla > > > Hope this note finds everyone doing the best they can this summer as, > its getting more and more impossible to hide from the heat here in > TN. Hope you are all finding cool places to hide away, and avoid > this heat. As time moves on and I start understanding my body more > with sickness, I'm getting to know more and more everyday about what I > should avoid and what's ok. The heat is in definite list. I find > that being in the heat, I find myself in the bed more for the next 2-3 > days following. Do any of you have any of the same symptoms, or am I > just weird? OK, no comments about the "being weird" LOL. > > Just wondering also, if all of you are some of you are getting the > emotional support you need being this sick from your families? Do > they understand your illness? Do that want to understand your > illness? Is this group meeting your emotional needs? What can we do > better to do that? Cause I can tell you right up front if we aren't > meeting your emotional needs that we certainly want to. This is your > support group too. And I'd love to hear your suggestions.Would you > like the chat times to be at different times, earlier or later, > different days, a morning chat? Anything like that would be > helpful. I too appreciate the people that responded to the recent > Roll Call. It helps to know what's going on, if your drastically sick > we would like to know. > > Another thing, I know its early to start thinking about the Holiday > Mail Out. But I do want to give us more time this year to get your > names in so we can compile and send out the list earlier. I just love > getting cards from all over the world. I know my postman is envious > that I get Christmas Cards from Sweden, Germany, Australia, Canada or > any other Country and of course from all over the states. Geeze, you > guys have become my family, you understand more about what's going on > with me than anyone person in my family and I have a huge handful of > nurses. Which by the way, don't know much about this disease. > > I wrote all of this to say, "thanks to all of you" for your love and > support. > > Love to you all, > > Ns Moderator > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > Live Group Chat:- > Mondays & Fridays 10pm EST USA > www.mirc.com download the program, follow instructions find Server > Dalnet then type in /join #NSChat. If you need help please notify > at topdat@... or topdat on yahoo messenger. > > 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 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2004 Report Share Posted July 29, 2004 teresa I love your letter and idea about the christmas card list.... as a new member, I am extremely grateful for finding this support group... i LOVE getting mail (dont we all??) ur right.. it would be cool to get cards from all over the world and especially those with pictures so we can place the face with the name !! i think its a great idea to have daily on-line chats too..i guess the yahoo or mirc can stay open indefintely.. if someone is there... then its their lucky day.. i know chatting is better way to release the tension etc... than posting emails... though they ALL help one way or another... im sure something can be worked out... as you have in the past listed several members AOL, yahoo, msn, instant messages... so that alone it a lifesaver when you need to talk to someone "now"..... I also hope everyone realizes that how much time is devoted to managing these sites and I THANK ALL the moderators for volunteering their time and for keeping up to date .. also Thank EVERYONE out there on this list for all your support and encourging words .... even when we all have those "bad" days.. we like hearing of them.... its nice to know we arent the only ones experiencing some of these symptoms etc.. as teresa said... the group is OPEN to ideas and suggestions... so bring'em on... alright... hopefully got my point acrossed hugs joleen:)j:) Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Hey Everyone Date: Wed, 28 Jul 2004 09:36:28 -0700 , You are awesome! What a wonderful letter! And YES, to your question, I can not take the heat at all!! Same think when I'm out in the heat, I find myself in bed trying to recover too, it just wipes me out, not to mention, I get lesions on my any skin exposed to the sun, too. I haven't head back from anyone, when I post, which I know I don't do to often. I hope I have not offended you, if I did, I am so sorry, and hope you will forgive me. I am doing better and feel so blessed to be doing better, expect for the pain, that seems to be getting worse!! But I am still here for all of you, so please forgive me if I said something to upset you, I love you all, you are my family and support group!! God Bless and Love, Marla > > > Hope this note finds everyone doing the best they can this summer as, > its getting more and more impossible to hide from the heat here in > TN. Hope you are all finding cool places to hide away, and avoid > this heat. As time moves on and I start understanding my body more > with sickness, I'm getting to know more and more everyday about what I > should avoid and what's ok. The heat is in definite list. I find > that being in the heat, I find myself in the bed more for the next 2-3 > days following. Do any of you have any of the same symptoms, or am I > just weird? OK, no comments about the "being weird" LOL. > > Just wondering also, if all of you are some of you are getting the > emotional support you need being this sick from your families? Do > they understand your illness? Do that want to understand your > illness? Is this group meeting your emotional needs? What can we do > better to do that? Cause I can tell you right up front if we aren't > meeting your emotional needs that we certainly want to. This is your > support group too. And I'd love to hear your suggestions.Would you > like the chat times to be at different times, earlier or later, > different days, a morning chat? Anything like that would be > helpful. I too appreciate the people that responded to the recent > Roll Call. It helps to know what's going on, if your drastically sick > we would like to know. > > Another thing, I know its early to start thinking about the Holiday > Mail Out. But I do want to give us more time this year to get your > names in so we can compile and send out the list earlier. I just love > getting cards from all over the world. I know my postman is envious > that I get Christmas Cards from Sweden, Germany, Australia, Canada or > any other Country and of course from all over the states. Geeze, you > guys have become my family, you understand more about what's going on > with me than anyone person in my family and I have a huge handful of > nurses. Which by the way, don't know much about this disease. > > I wrote all of this to say, "thanks to all of you" for your love and > support. > > Love to you all, > > Ns Moderator > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > Live Group Chat:- > Mondays & Fridays 10pm EST USA > www.mirc.com download the program, follow instructions find Server > Dalnet then type in /join #NSChat. If you need help please notify > at topdat@... or topdat on yahoo messenger. > > 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 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2004 Report Share Posted July 29, 2004 teresa I love your letter and idea about the christmas card list.... as a new member, I am extremely grateful for finding this support group... i LOVE getting mail (dont we all??) ur right.. it would be cool to get cards from all over the world and especially those with pictures so we can place the face with the name !! i think its a great idea to have daily on-line chats too..i guess the yahoo or mirc can stay open indefintely.. if someone is there... then its their lucky day.. i know chatting is better way to release the tension etc... than posting emails... though they ALL help one way or another... im sure something can be worked out... as you have in the past listed several members AOL, yahoo, msn, instant messages... so that alone it a lifesaver when you need to talk to someone "now"..... I also hope everyone realizes that how much time is devoted to managing these sites and I THANK ALL the moderators for volunteering their time and for keeping up to date .. also Thank EVERYONE out there on this list for all your support and encourging words .... even when we all have those "bad" days.. we like hearing of them.... its nice to know we arent the only ones experiencing some of these symptoms etc.. as teresa said... the group is OPEN to ideas and suggestions... so bring'em on... alright... hopefully got my point acrossed hugs joleen:)j:) Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Hey Everyone Date: Wed, 28 Jul 2004 09:36:28 -0700 , You are awesome! What a wonderful letter! And YES, to your question, I can not take the heat at all!! Same think when I'm out in the heat, I find myself in bed trying to recover too, it just wipes me out, not to mention, I get lesions on my any skin exposed to the sun, too. I haven't head back from anyone, when I post, which I know I don't do to often. I hope I have not offended you, if I did, I am so sorry, and hope you will forgive me. I am doing better and feel so blessed to be doing better, expect for the pain, that seems to be getting worse!! But I am still here for all of you, so please forgive me if I said something to upset you, I love you all, you are my family and support group!! God Bless and Love, Marla > > > Hope this note finds everyone doing the best they can this summer as, > its getting more and more impossible to hide from the heat here in > TN. Hope you are all finding cool places to hide away, and avoid > this heat. As time moves on and I start understanding my body more > with sickness, I'm getting to know more and more everyday about what I > should avoid and what's ok. The heat is in definite list. I find > that being in the heat, I find myself in the bed more for the next 2-3 > days following. Do any of you have any of the same symptoms, or am I > just weird? OK, no comments about the "being weird" LOL. > > Just wondering also, if all of you are some of you are getting the > emotional support you need being this sick from your families? Do > they understand your illness? Do that want to understand your > illness? Is this group meeting your emotional needs? What can we do > better to do that? Cause I can tell you right up front if we aren't > meeting your emotional needs that we certainly want to. This is your > support group too. And I'd love to hear your suggestions.Would you > like the chat times to be at different times, earlier or later, > different days, a morning chat? Anything like that would be > helpful. I too appreciate the people that responded to the recent > Roll Call. It helps to know what's going on, if your drastically sick > we would like to know. > > Another thing, I know its early to start thinking about the Holiday > Mail Out. But I do want to give us more time this year to get your > names in so we can compile and send out the list earlier. I just love > getting cards from all over the world. I know my postman is envious > that I get Christmas Cards from Sweden, Germany, Australia, Canada or > any other Country and of course from all over the states. Geeze, you > guys have become my family, you understand more about what's going on > with me than anyone person in my family and I have a huge handful of > nurses. Which by the way, don't know much about this disease. > > I wrote all of this to say, "thanks to all of you" for your love and > support. > > Love to you all, > > Ns Moderator > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > Live Group Chat:- > Mondays & Fridays 10pm EST USA > www.mirc.com download the program, follow instructions find Server > Dalnet then type in /join #NSChat. If you need help please notify > at topdat@... or topdat on yahoo messenger. > > 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 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2004 Report Share Posted July 29, 2004 Hi Lashunta, Nice to hear from you. You are sounding so chipper and are so near to your goal that it makes me happy just to read your message. Keep up the great work. BTW are you still going to the San Leandro support group meetings? I haven't been able to get there since May and won't be back until the August meeting. I've been so busy lately that I'm really behind in replying to my e-mail .. . . so I'm hoping that your great weekend has extended to a wonderful week. All the best, Kay in San Leandro open RNY 12/1/03 lashunta7824 wrote: > Hi everyone this is lashunta and I am up bright and early this nice > saturday morning, well I have a weigh in this coming thursday and I > am hoping to be somewhere close to my goal. Well I weighed myself at > ww's this morning and only have 16 more pounds to go as of this > morning so I am very happy and relieve that this is the first time I > have been this close to my goal. Well enough about me, hope everyone > have a great weekend. I know i will this has just made my weekend > start off great. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2004 Report Share Posted July 29, 2004 Hi Lashunta, Nice to hear from you. You are sounding so chipper and are so near to your goal that it makes me happy just to read your message. Keep up the great work. BTW are you still going to the San Leandro support group meetings? I haven't been able to get there since May and won't be back until the August meeting. I've been so busy lately that I'm really behind in replying to my e-mail .. . . so I'm hoping that your great weekend has extended to a wonderful week. All the best, Kay in San Leandro open RNY 12/1/03 lashunta7824 wrote: > Hi everyone this is lashunta and I am up bright and early this nice > saturday morning, well I have a weigh in this coming thursday and I > am hoping to be somewhere close to my goal. Well I weighed myself at > ww's this morning and only have 16 more pounds to go as of this > morning so I am very happy and relieve that this is the first time I > have been this close to my goal. Well enough about me, hope everyone > have a great weekend. I know i will this has just made my weekend > start off great. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2004 Report Share Posted July 29, 2004 Hi Lashunta, Nice to hear from you. You are sounding so chipper and are so near to your goal that it makes me happy just to read your message. Keep up the great work. BTW are you still going to the San Leandro support group meetings? I haven't been able to get there since May and won't be back until the August meeting. I've been so busy lately that I'm really behind in replying to my e-mail .. . . so I'm hoping that your great weekend has extended to a wonderful week. All the best, Kay in San Leandro open RNY 12/1/03 lashunta7824 wrote: > Hi everyone this is lashunta and I am up bright and early this nice > saturday morning, well I have a weigh in this coming thursday and I > am hoping to be somewhere close to my goal. Well I weighed myself at > ww's this morning and only have 16 more pounds to go as of this > morning so I am very happy and relieve that this is the first time I > have been this close to my goal. Well enough about me, hope everyone > have a great weekend. I know i will this has just made my weekend > start off great. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2004 Report Share Posted July 30, 2004 Hi Marla I don't think you've offended anyone at all. I love reading EVERYONE'S posts and value the advice, opinions and stories of every single person in this wonderful sarc family, so please keep posting and keeping us up to date with how you're getting along. I'm really really happy that you're feeling better too, that's so great. Hi Jeri, We all love you too and I know that everyone here understands just how our lives can get sometimes. Like you I think of everyone everyday even when I don't have the time to post and I think we all know that in our hearts too. I just can't believe that you are able to work and do everything that you do being so sick with this monster. There is no way I could do it. And I have my purple bootstraps with me all the time. Happy birthday Debbie, Hope your day is full of happiness and love and pain free. Thinking of you all Luv Toni Brisbane, OZ --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.726 / Virus Database: 481 - Release Date: 22/07/2004 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2004 Report Share Posted July 30, 2004 Hi Marla I don't think you've offended anyone at all. I love reading EVERYONE'S posts and value the advice, opinions and stories of every single person in this wonderful sarc family, so please keep posting and keeping us up to date with how you're getting along. I'm really really happy that you're feeling better too, that's so great. Hi Jeri, We all love you too and I know that everyone here understands just how our lives can get sometimes. Like you I think of everyone everyday even when I don't have the time to post and I think we all know that in our hearts too. I just can't believe that you are able to work and do everything that you do being so sick with this monster. There is no way I could do it. And I have my purple bootstraps with me all the time. Happy birthday Debbie, Hope your day is full of happiness and love and pain free. Thinking of you all Luv Toni Brisbane, OZ --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.726 / Virus Database: 481 - Release Date: 22/07/2004 Quote Link to comment Share on other sites More sharing options...
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