Guest guest Posted May 12, 2004 Report Share Posted May 12, 2004 Hi I'm so sorry to hear you're getting a flare up. I'm sending you healing and warmest thoughts for a speedy recovery. You take special care of YOU. Welcome Joleen, you will find so many loving, friendly people here that will help you in any way they are able. I'm so sorry you have this horrible disease, it's a long hard road, but you CAN get there, even though it is a HUGE struggle at times and odds seem insurmountable. I'm sure we've all been there and certainly where you are at right now. Happy birthday to you Shirley. Have a great pain free day. Luv Toni Brisbane, OZ --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.673 / Virus Database: 435 - Release Date: 1/05/2004 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2004 Report Share Posted July 24, 2004 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 28, 2004 Report Share Posted July 28, 2004 Hi . I find the heat horrible for me too, although it has been unusually cool up here this summer in New England. We still have had a couple of hot & humid days and I hear there are some coming up this week. I stay inside with the AC myself! You are not wierd , unless we both are! LOL I don't get much emotional support from my family at all. They don't understand , the kids just know that Mom is always sick and can't do what she used to do. I have tried to explain it to them and I know they try to understand. My husband just refuses to hear it as usual. He turns on the tv and ignores it. (But he's always done that, so it's no big deal.) That's why I love this group. They are my family for support. I don't know what I would do without them. I am so glad I found them when I did or else I would have been more of a wreck than I already was! So try and hide to stay cool! Can you believe the summer is almost half over already? Luv, Debbie wrote: 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 CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAwww.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/messagesMembers 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 28, 2004 Report Share Posted July 28, 2004 Hi . I find the heat horrible for me too, although it has been unusually cool up here this summer in New England. We still have had a couple of hot & humid days and I hear there are some coming up this week. I stay inside with the AC myself! You are not wierd , unless we both are! LOL I don't get much emotional support from my family at all. They don't understand , the kids just know that Mom is always sick and can't do what she used to do. I have tried to explain it to them and I know they try to understand. My husband just refuses to hear it as usual. He turns on the tv and ignores it. (But he's always done that, so it's no big deal.) That's why I love this group. They are my family for support. I don't know what I would do without them. I am so glad I found them when I did or else I would have been more of a wreck than I already was! So try and hide to stay cool! Can you believe the summer is almost half over already? Luv, Debbie wrote: 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 CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAwww.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/messagesMembers 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 28, 2004 Report Share Posted July 28, 2004 , 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 28, 2004 Report Share Posted July 28, 2004 , 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 28, 2004 Report Share Posted July 28, 2004 Hey Marla, Honey you've never that I know of offended anyone and especially not me. So, no worries here, I often don't get responses either and that sometimes worry me that I've done something wrong, or my big mouth has upset someone, but I really think its that everyone is just trying to get along with their on sarcoid sick life and sometimes doesn't take the time to answer. Forgive me for that, I don't answer the post that I should. Anyway Marla, You are loved! You take very much care of yourself, and please if you want to post more often please do, I'll have to say, I've had you on my mind for several days, wondering where you were and if you were ok. Love ya, -- Re: Hey Everyone ,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 28, 2004 Report Share Posted July 28, 2004 Hey Marla, Honey you've never that I know of offended anyone and especially not me. So, no worries here, I often don't get responses either and that sometimes worry me that I've done something wrong, or my big mouth has upset someone, but I really think its that everyone is just trying to get along with their on sarcoid sick life and sometimes doesn't take the time to answer. Forgive me for that, I don't answer the post that I should. Anyway Marla, You are loved! You take very much care of yourself, and please if you want to post more often please do, I'll have to say, I've had you on my mind for several days, wondering where you were and if you were ok. Love ya, -- Re: Hey Everyone ,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 28, 2004 Report Share Posted July 28, 2004 Hey Debbie, good to hear from you, I was thinking about you too. Yeah the heat is a killer, I hate it. Especially since every a/c that we had stopped working. They house a/c and even my vehicle a/c. Can you believe that. We finally managed to get a/c in the house but my vehicle is very expensive for me on disability, sooo I only go anywhere in it that I have to, and use my parents vehicle if I can. I understand about your kids, mine turned 14 this year and being MR COOL. It embarrasses him that mom uses a quad cane to walk short distances, then has a scooter for long distances. He still after 3 years forgets I'm sick and pushes my limits till sometimes I just drop. I think that's a good thing sometimes, cause I want to do more. You take care of yourself, know you are thought of and if I can be of any support to you please feel free to let me know. We have to take care of each other. Hugs, -- Re: Hey Everyone Hi . I find the heat horrible for me too, although it has been unusually cool up here this summer in New England. We still have had a couple of hot & humid days and I hear there are some coming up this week. I stay inside with the AC myself! You are not wierd , unless we both are! LOL I don't get much emotional support from my family at all. They don't understand , the kids just know that Mom is always sick and can't do what she used to do. I have tried to explain it to them and I know they try to understand. My husband just refuses to hear it as usual. He turns on the tv and ignores it. (But he's always done that, so it's no big deal.) That's why I love this group. They are my family for support. I don't know what I would do without them. I am so glad I found them when I did or else I would have been more of a wreck than I already was! So try and hide to stay cool! Can you believe the summer is almost half over already? Luv, Debbie wrote: 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 CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAwww.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/messagesMembers 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 28, 2004 Report Share Posted July 28, 2004 Hey Debbie, good to hear from you, I was thinking about you too. Yeah the heat is a killer, I hate it. Especially since every a/c that we had stopped working. They house a/c and even my vehicle a/c. Can you believe that. We finally managed to get a/c in the house but my vehicle is very expensive for me on disability, sooo I only go anywhere in it that I have to, and use my parents vehicle if I can. I understand about your kids, mine turned 14 this year and being MR COOL. It embarrasses him that mom uses a quad cane to walk short distances, then has a scooter for long distances. He still after 3 years forgets I'm sick and pushes my limits till sometimes I just drop. I think that's a good thing sometimes, cause I want to do more. You take care of yourself, know you are thought of and if I can be of any support to you please feel free to let me know. We have to take care of each other. Hugs, -- Re: Hey Everyone Hi . I find the heat horrible for me too, although it has been unusually cool up here this summer in New England. We still have had a couple of hot & humid days and I hear there are some coming up this week. I stay inside with the AC myself! You are not wierd , unless we both are! LOL I don't get much emotional support from my family at all. They don't understand , the kids just know that Mom is always sick and can't do what she used to do. I have tried to explain it to them and I know they try to understand. My husband just refuses to hear it as usual. He turns on the tv and ignores it. (But he's always done that, so it's no big deal.) That's why I love this group. They are my family for support. I don't know what I would do without them. I am so glad I found them when I did or else I would have been more of a wreck than I already was! So try and hide to stay cool! Can you believe the summer is almost half over already? Luv, Debbie wrote: 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 CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAwww.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/messagesMembers 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 28, 2004 Report Share Posted July 28, 2004 Hi , I don't have time or energy to answer properly right now, but thanks for your support as well! I Love the group and I Love the individuals in the group! I Love you! Jeri 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.