Guest guest Posted May 2, 2004 Report Share Posted May 2, 2004 Hello ALL, What a lousy weekend so far., I happened to get sick and not feeling too good. The pain meds are not working. I have hernaiated disks about 4 of them also arthritis in my nerves and tissues. To top that off I had to fall in the house at 30 I feel like I am 100. I have 2 kids one who is 8 and the other who is 13 months. So to say the least not good. How is everyone else? In memory of my Daddy ph & Mommy both died from smoking.In your travels if you know someone that is in need of a caring touch, is sick, dying, has lost someone to death please go to this website http://www.angelsforhope.org and have an angel sent to them. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2005 Report Share Posted May 16, 2005 , I am so glad you had a good time, my husband and I are going to San TX this weekend for our 22 anniversary and I am so excited to get away, we have not been anywhere without our kids in years, and though I love taking my kids, it will be so nice to have a break and be just the two of us. Even though he didn’t get the job (they put a hiring freeze on, after offering the job to him) we still want to check out the city, as we believe when the freeze is lifted they will call him back. AND, no you were no wrong asking questions regarding your daughter’s first communion. WE need to remember to use the delete button, when we don’t want to read something. We need each other here in more then just our NS, we are a whole person. Please the Moderators work so hard, they can’t possible keep all of us happy, please just delete and move on to the next posting. I delete certain post, in fact most the time, unless it is address to me, or to all, I just delete. We need to take care of each other. , keep your happy feelings with you from your trip they will carry you for awhile. I love each and every one of you, God Bless us all, Marla Hello All Hello Everyone, I just got back from my trip to California late last night. It was a fantastic experience! Once we got out there, they explained that the " Cook Off " was just for fun and it wasn't really a competition. There were 3 other teams (one chose not to come..too bad for them!), and everyone was really there to have fun except one team. They were really serious and went a bit over board, so they got the fake " first place medal " . But I must say, popular vote seemed to be that everyone liked the PhillyCheeseburger best! But, most important, it was a great time. The people at Sutter Home Winery are some of the nicest people in the world. They were so kind and generous to all of us that there was no way anyone could have a bad time! It was a short visit, but a much needed break from the insanity. I did get into San Fransico for a few hours on Saturday and I really enjoyed myself. The weather was fantastic the whole time! I haven't had a chance to read all of the posts yet, but I must say I am saddened by the response to the political/religous content. One of my biggest problems with having such a " rare, uncurable " disease is that it seems to try to take over my whole life and identity. All that I am now is a person with NS. I find it sad that we can't share other parts of our lives so that we aren't always just reduced to the illness. I really hoped this was a place where we could be individuals beyond the disease and share all that we had to share. If we are talking about TRUE TOLERANCE, it is letting people be who they are and not judging them. Tolerance isn't holding back and making others hold back. Tolerance is understanding that we are all different and being able to listen to what they have to say despite the differences. We don't have to agree, but we aren't being tolerant if we don't let people speak. I understand that the moderators are taking care of 300 people, and you can never make 300 people happy, I can't even seem to make the 5 people in my life happy! But if we are going to say that we are going to be tolerant, then I think that is what we should be. Quite frankly, at this point, I need a supportive place where I can be anything but sick with NS right now. I am tired of it taking over my identity and reducing me to nothing but sick. Yes, I have the disease, and if sucks. ANd that is why I found this website, but I still need to talk about other things. I talked about my daughter's First Communion. I asked the group for help, because this is all I have. I have no family or friends to ask. That was religious, was I wrong to do that? But if I can't talk freely, that makes me sad. I enjoy a good debate with people on all kinds of subjects because it makes me feel alive again. I don't always do well because the sarc is in my frontal lobe, but I still enjoy it. I don't have to agree, and sometimes I debate even if I do agree just to use more brain power and see things in a broader sense. Tolerance isn't keeping our mouth shut because people believe something different and we don't want to affend them. Tolerance is hearing what others have to say and accepting them anyway. If it is labled in the title and you don't like it don't read it! How hard is that. I am not just a sick person with NS. I am a single mom of 2 great kids who happened to be Catholic when I am not. I am a counselor by trade who can't counsel because of my disabilities. I love to do gardening and build things. I enjoy sewing and cooking. Spiritually I am searching for a balance right now. But I am so many things and I want to be able to share all of them and still be accepted by a group who is TOLERANT to understand how important it is to not reduce me to just a sick person with NS. That is just my view. I understand this is such a difficult job for the moderators. I just hope we don't just give in to the people who like to whine instead of expecting THEM to be TOLERANT. I hope everyone is having a pain-free day and can find joy in at least one thing today. Missing You ALL, ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community NS CHAT:- Has been cancelled for now. Message Archives:- http://groups.yahoo.com/group/Neurosarcoidosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2005 Report Share Posted May 16, 2005 , I am so glad you had a good time, my husband and I are going to San TX this weekend for our 22 anniversary and I am so excited to get away, we have not been anywhere without our kids in years, and though I love taking my kids, it will be so nice to have a break and be just the two of us. Even though he didn’t get the job (they put a hiring freeze on, after offering the job to him) we still want to check out the city, as we believe when the freeze is lifted they will call him back. AND, no you were no wrong asking questions regarding your daughter’s first communion. WE need to remember to use the delete button, when we don’t want to read something. We need each other here in more then just our NS, we are a whole person. Please the Moderators work so hard, they can’t possible keep all of us happy, please just delete and move on to the next posting. I delete certain post, in fact most the time, unless it is address to me, or to all, I just delete. We need to take care of each other. , keep your happy feelings with you from your trip they will carry you for awhile. I love each and every one of you, God Bless us all, Marla Hello All Hello Everyone, I just got back from my trip to California late last night. It was a fantastic experience! Once we got out there, they explained that the " Cook Off " was just for fun and it wasn't really a competition. There were 3 other teams (one chose not to come..too bad for them!), and everyone was really there to have fun except one team. They were really serious and went a bit over board, so they got the fake " first place medal " . But I must say, popular vote seemed to be that everyone liked the PhillyCheeseburger best! But, most important, it was a great time. The people at Sutter Home Winery are some of the nicest people in the world. They were so kind and generous to all of us that there was no way anyone could have a bad time! It was a short visit, but a much needed break from the insanity. I did get into San Fransico for a few hours on Saturday and I really enjoyed myself. The weather was fantastic the whole time! I haven't had a chance to read all of the posts yet, but I must say I am saddened by the response to the political/religous content. One of my biggest problems with having such a " rare, uncurable " disease is that it seems to try to take over my whole life and identity. All that I am now is a person with NS. I find it sad that we can't share other parts of our lives so that we aren't always just reduced to the illness. I really hoped this was a place where we could be individuals beyond the disease and share all that we had to share. If we are talking about TRUE TOLERANCE, it is letting people be who they are and not judging them. Tolerance isn't holding back and making others hold back. Tolerance is understanding that we are all different and being able to listen to what they have to say despite the differences. We don't have to agree, but we aren't being tolerant if we don't let people speak. I understand that the moderators are taking care of 300 people, and you can never make 300 people happy, I can't even seem to make the 5 people in my life happy! But if we are going to say that we are going to be tolerant, then I think that is what we should be. Quite frankly, at this point, I need a supportive place where I can be anything but sick with NS right now. I am tired of it taking over my identity and reducing me to nothing but sick. Yes, I have the disease, and if sucks. ANd that is why I found this website, but I still need to talk about other things. I talked about my daughter's First Communion. I asked the group for help, because this is all I have. I have no family or friends to ask. That was religious, was I wrong to do that? But if I can't talk freely, that makes me sad. I enjoy a good debate with people on all kinds of subjects because it makes me feel alive again. I don't always do well because the sarc is in my frontal lobe, but I still enjoy it. I don't have to agree, and sometimes I debate even if I do agree just to use more brain power and see things in a broader sense. Tolerance isn't keeping our mouth shut because people believe something different and we don't want to affend them. Tolerance is hearing what others have to say and accepting them anyway. If it is labled in the title and you don't like it don't read it! How hard is that. I am not just a sick person with NS. I am a single mom of 2 great kids who happened to be Catholic when I am not. I am a counselor by trade who can't counsel because of my disabilities. I love to do gardening and build things. I enjoy sewing and cooking. Spiritually I am searching for a balance right now. But I am so many things and I want to be able to share all of them and still be accepted by a group who is TOLERANT to understand how important it is to not reduce me to just a sick person with NS. That is just my view. I understand this is such a difficult job for the moderators. I just hope we don't just give in to the people who like to whine instead of expecting THEM to be TOLERANT. I hope everyone is having a pain-free day and can find joy in at least one thing today. Missing You ALL, ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community NS CHAT:- Has been cancelled for now. Message Archives:- http://groups.yahoo.com/group/Neurosarcoidosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2005 Report Share Posted May 16, 2005 --- lynne zacharias wrote: > , > Glad that you had a great time. What were they > cooking? I know that you probably said, but I > forgot. I also have my squares done, but I forgot > who I sent them to. Can you help me? > Lynne > > mom22angels1 wrote: > Hello Everyone, > I just got back from my trip to California late last > night. It was > a fantastic experience! Once we got out there, they > explained that > the " Cook Off " was just for fun and it wasn't really > a competition. > There were 3 other teams (one chose not to come..too > bad for them!), > and everyone was really there to have fun except one > team. They > were really serious and went a bit over board, so > they got the > fake " first place medal " . But I must say, popular > vote seemed to be > that everyone liked the PhillyCheeseburger best! > But, most important, it was a great time. The > people at Sutter Home > Winery are some of the nicest people in the world. > They were so > kind and generous to all of us that there was no way > anyone could > have a bad time! It was a short visit, but a much > needed break from > the insanity. I did get into San Fransico for a few > hours on > Saturday and I really enjoyed myself. The weather > was fantastic the > whole time! > I haven't had a chance to read all of the posts yet, > but I must say > I am saddened by the response to the > political/religous content. > One of my biggest problems with having such a " rare, > uncurable " > disease is that it seems to try to take over my > whole life and > identity. All that I am now is a person with NS. I > find it sad > that we can't share other parts of our lives so that > we aren't > always just reduced to the illness. I really hoped > this was a place > where we could be individuals beyond the disease and > share all that > we had to share. > If we are talking about TRUE TOLERANCE, it is > letting people be who > they are and not judging them. Tolerance isn't > holding back and > making others hold back. Tolerance is understanding > that we are all > different and being able to listen to what they have > to say despite > the differences. We don't have to agree, but we > aren't being > tolerant if we don't let people speak. > I understand that the moderators are taking care of > 300 people, and > you can never make 300 people happy, I can't even > seem to make the 5 > people in my life happy! But if we are going to say > that we are > going to be tolerant, then I think that is what we > should be. Quite > frankly, at this point, I need a supportive place > where I can be > anything but sick with NS right now. I am tired of > it taking over > my identity and reducing me to nothing but sick. > Yes, I have the disease, and if sucks. ANd that is > why I found this > website, but I still need to talk about other > things. I talked about > my daughter's First Communion. I asked the group > for help, because > this is all I have. I have no family or friends to > ask. That was > religious, was I wrong to do that? But if I can't > talk freely, that > makes me sad. I enjoy a good debate with people on > all kinds of > subjects because it makes me feel alive again. I > don't always do > well because the sarc is in my frontal lobe, but I > still enjoy it. > I don't have to agree, and sometimes I debate even > if I do agree > just to use more brain power and see things in a > broader sense. > Tolerance isn't keeping our mouth shut because > people believe > something different and we don't want to affend > them. Tolerance is > hearing what others have to say and accepting them > anyway. If it is > labled in the title and you don't like it don't read > it! How hard is > that. > I am not just a sick person with NS. I am a single > mom of 2 great > kids who happened to be Catholic when I am not. I > am a counselor by > trade who can't counsel because of my disabilities. > I love to do > gardening and build things. I enjoy sewing and > cooking. > Spiritually I am searching for a balance right now. > But I am so > many things and I want to be able to share all of > them and still be > accepted by a group who is TOLERANT to understand > how important it > is to not reduce me to just a sick person with NS. > That is just my view. I understand this is such a > difficult job for > the moderators. I just hope we don't just give in > to the people who > like to whine instead of expecting THEM to be > TOLERANT. > I hope everyone is having a pain-free day and can > find joy in at > least one thing today. > Missing You ALL, > > > - I am so glad that u had a great time in Cal. at the cook-off. Matt > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > NS CHAT:- Has been cancelled for now. > > Message Archives:- > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > Members Database:- > Listings of locations, phone numbers, and instant > messengers. > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2005 Report Share Posted May 16, 2005 --- lynne zacharias wrote: > , > Glad that you had a great time. What were they > cooking? I know that you probably said, but I > forgot. I also have my squares done, but I forgot > who I sent them to. Can you help me? > Lynne > > mom22angels1 wrote: > Hello Everyone, > I just got back from my trip to California late last > night. It was > a fantastic experience! Once we got out there, they > explained that > the " Cook Off " was just for fun and it wasn't really > a competition. > There were 3 other teams (one chose not to come..too > bad for them!), > and everyone was really there to have fun except one > team. They > were really serious and went a bit over board, so > they got the > fake " first place medal " . But I must say, popular > vote seemed to be > that everyone liked the PhillyCheeseburger best! > But, most important, it was a great time. The > people at Sutter Home > Winery are some of the nicest people in the world. > They were so > kind and generous to all of us that there was no way > anyone could > have a bad time! It was a short visit, but a much > needed break from > the insanity. I did get into San Fransico for a few > hours on > Saturday and I really enjoyed myself. The weather > was fantastic the > whole time! > I haven't had a chance to read all of the posts yet, > but I must say > I am saddened by the response to the > political/religous content. > One of my biggest problems with having such a " rare, > uncurable " > disease is that it seems to try to take over my > whole life and > identity. All that I am now is a person with NS. I > find it sad > that we can't share other parts of our lives so that > we aren't > always just reduced to the illness. I really hoped > this was a place > where we could be individuals beyond the disease and > share all that > we had to share. > If we are talking about TRUE TOLERANCE, it is > letting people be who > they are and not judging them. Tolerance isn't > holding back and > making others hold back. Tolerance is understanding > that we are all > different and being able to listen to what they have > to say despite > the differences. We don't have to agree, but we > aren't being > tolerant if we don't let people speak. > I understand that the moderators are taking care of > 300 people, and > you can never make 300 people happy, I can't even > seem to make the 5 > people in my life happy! But if we are going to say > that we are > going to be tolerant, then I think that is what we > should be. Quite > frankly, at this point, I need a supportive place > where I can be > anything but sick with NS right now. I am tired of > it taking over > my identity and reducing me to nothing but sick. > Yes, I have the disease, and if sucks. ANd that is > why I found this > website, but I still need to talk about other > things. I talked about > my daughter's First Communion. I asked the group > for help, because > this is all I have. I have no family or friends to > ask. That was > religious, was I wrong to do that? But if I can't > talk freely, that > makes me sad. I enjoy a good debate with people on > all kinds of > subjects because it makes me feel alive again. I > don't always do > well because the sarc is in my frontal lobe, but I > still enjoy it. > I don't have to agree, and sometimes I debate even > if I do agree > just to use more brain power and see things in a > broader sense. > Tolerance isn't keeping our mouth shut because > people believe > something different and we don't want to affend > them. Tolerance is > hearing what others have to say and accepting them > anyway. If it is > labled in the title and you don't like it don't read > it! How hard is > that. > I am not just a sick person with NS. I am a single > mom of 2 great > kids who happened to be Catholic when I am not. I > am a counselor by > trade who can't counsel because of my disabilities. > I love to do > gardening and build things. I enjoy sewing and > cooking. > Spiritually I am searching for a balance right now. > But I am so > many things and I want to be able to share all of > them and still be > accepted by a group who is TOLERANT to understand > how important it > is to not reduce me to just a sick person with NS. > That is just my view. I understand this is such a > difficult job for > the moderators. I just hope we don't just give in > to the people who > like to whine instead of expecting THEM to be > TOLERANT. > I hope everyone is having a pain-free day and can > find joy in at > least one thing today. > Missing You ALL, > > > - I am so glad that u had a great time in Cal. at the cook-off. Matt > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > NS CHAT:- Has been cancelled for now. > > Message Archives:- > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > Members Database:- > Listings of locations, phone numbers, and instant > messengers. > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > 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.