Hello All

[Guest guest]

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,

[Guest guest]

,

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?

Lynnemom22angels1 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,~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.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