I agree and if I am ever on there we can chat,my name is Lia.
Amy H said:
It would be even better if members here would chat with one another,... i find that no one uses the chat room... i have met a few authentic people on here, but know that i went out and extended the first hello.. so many times i have attempted to reach someone to chat with, getting no reply. It would be great to meet others in any way that works! thank you for your outlook,
Amy
I hope you can get to Austin too.
draginfli said:
Lia,
This is a fabulous idea!! Fabulous!
We wouldn't have to worry about our splotchy faces or our brain fog conversations either! ;)
This is something that I would love to be a part of!
Currently I'm in the Lometa/Lampasas, Texas area.
Hopefully by end of summer I'll be back in the Austin, Texas area - crossing my fingers that there are others in this area!
Thank you Lia!
Ang
You can always talk to me I dont mind we all have bad days, moments the great thing about this service we can communicate and can relate, my name is Lia from Ga born and raised in Boston Mass.
mzfuller said:
This is a great idea maybe we also could call sumtimes and talk to each other bout wat we r goin through sumtimes because i really need sumone who can relate to wat im goin through and maybe we can share sum thoughts wit each other so if u think its a good idea lets start there ok im from texas
Darn it I don't have Skype :( I do have Face time for my Ipad..
Bjwright2012@me.com if anyone out there has facetime :)
Regards,
Bethany
Hi Bethany,
I had skype and incredimal and got rid of them both...slowing down my pc...as i used to talk to a cousin in spain and autralia but my god i was on the moan at the time the wordings look slow motion.lol
Bethany Wright said:
Darn it I don't have Skype :( I do have Face time for my Ipad..
Bjwright2012@me.com if anyone out there has facetime :)
Regards,
Bethany
Lia, I can help you set it up sometime this week. It is free. There are other options where one can pay, but I dont use that. I work part time and home by 12:00, New York time.
John, I can call you too!
lia nuriddin said:
I am not familar with this set up you woulld have to educate me on how to do this,it sounds exciting virial,ido have a camera, you made me laugh about fixing our hair that was cute,so tell me how we get started.
JeanJeanne said:Just wanted to make a suggestion, being that we live so far apart, I live in New York...First, this is a great idea getting to know each other, and Second, we could join Google and multi chat. It is a new feature they have with their social media. Like FB has mini chat, Google has multi chat. Actually they are not the only one who does this. There are other apps, so to speak, that could be attached to this page and we could chat through here. Yes, we look awful on camera, but what better excuse to get our hair and makeup done. AND, we dont have to leave the house AND, if we get tired we can lay down and chat. They also have virtual classrooms that we can join and be avatars too. My friends and I used to meet in YoVille. It was surreal at best. My friends live all over and this was the only way we could meet at times. So maybe our moderators can investigate this and we can come together virtually. Just a thought...
BRAIN FOG!!! It is so embarrassing. I have two group pages and belong to several others on FB, We share a common denominator of toxic water exposure while living in the military. I seriously embarrassed myself the other day, I asked the same question to someone that I had already asked. Mind you we hacve been talking for two years!This is upsetting to say the least. I am trying to act professional in helping people...well they laughed and I felt the fool! One of them has traumatic brain injury and said he has problems sometimes too.
Kadeeeee said:
Yes, lia...I did! Check your friend requests! lol
lia nuriddin said:
did you find out the answer to how to add a friend?
Kadeeeee said:
lol! I guess we all have the same problems! Today, I thought I must have left my purse somewhere because I always keep it in the same place! I started sweating and my heart was pounding, trying to remember when I had it last until I realized while babysitting my grandson I put it somewhere else! Geesh! Always so afraid I'm going to lose something or forget something important. Thank you so much for your help! Better get started before I forget what you said! Kathy
draginfli said:Kadeeeee,
This confused me for a while too! I just go to their profile page, not the page where their comments are. There should be a "add friend" place that you can click towards the top.
Also - and this IS a brain fog moment! Once I was trying to add a friend that I already had! I spent an hour trying to figure it out before it dawned on me to check my "friend list"! Ha Ha!
Ang
Kadeeeee said:Not sure if it's lupus related fog...Can't figure out how to send a friend request! lol Would someone tell me what to do!?
ok it is 11.00pm in ga right now so when it is good for you , do you want to send me instructions to me email adress if u want.
JeanJeanne said:
Lia, I can help you set it up sometime this week. It is free. There are other options where one can pay, but I dont use that. I work part time and home by 12:00, New York time.
John, I can call you too!
lia nuriddin said:
I am not familar with this set up you woulld have to educate me on how to do this,it sounds exciting virial,ido have a camera, you made me laugh about fixing our hair that was cute,so tell me how we get started.
JeanJeanne said:Just wanted to make a suggestion, being that we live so far apart, I live in New York...First, this is a great idea getting to know each other, and Second, we could join Google and multi chat. It is a new feature they have with their social media. Like FB has mini chat, Google has multi chat. Actually they are not the only one who does this. There are other apps, so to speak, that could be attached to this page and we could chat through here. Yes, we look awful on camera, but what better excuse to get our hair and makeup done. AND, we dont have to leave the house AND, if we get tired we can lay down and chat. They also have virtual classrooms that we can join and be avatars too. My friends and I used to meet in YoVille. It was surreal at best. My friends live all over and this was the only way we could meet at times. So maybe our moderators can investigate this and we can come together virtually. Just a thought...
Lia, my email address is ■■■■■■■■■■■■■■■■■■■■■■. Send me an email and I can give you my phone number. We can do this together. All I would ask you to do is google Skype and follow the steps for the free version. Then we can chat. Then we might try the group chat and call John too. To see if that works, for free. I am all about free stuff too! Hope your day is a good one and not a seriously hot one!
An interesting idea. I have lost touch with a few friends, and family, too. Mostly it is because they only have time after work to talk, and most of the time I don't have energy to even have a conversation. I don't really want them to see what a mess I am, which they would know if I tried to talk to them in the evenings. I get so incoherent, and my tongue stumbles trying to say the right thing. It is something I am not really willing to share with many people. It would be very nice to meet for a lunch with others afflicted with this problem. Anyone with Lupus out there living in the Antelope Valley, So. CA??
Going out and meeting for lunch has as much preparation, as talking with people on-line. Preparing to go out and then suddenly becoming weak and cancelling your date is what usually happens. I have often thought of starting a support group in my area, but as I know all too well, many may commit, but at the last minute will cancel. I have done this on occasion.
I understand that many people do not like the concept of talking on-line, as we all have a vain side, and are fearful of how we look. It is the same thing as if we were going out, we are still concered about our image. It is safer to meet people first, face to face on-line, than it is meeting in person for the first time. Unfortunately, we live in a dangerous world. We dont know who each other is...we only have faith that who we are speaking too are legit.
I, like everyone else here, wants to help in any way I can. I have a Master's in Education and my thesis was on the importance of a child's self esteem. Without this, children grow up to be insecure adults. I can usually pinpoint in adults the age at which their self esteem was damaged as a child. Many adults do not recover from this damage, but many do.
Getting to my point....we are all dealing with an illness that affects our self image as well as our self esteem. I have stopped telling people I have this illness, because of the many reasons that have been listed in this discussion. I have forgotten about the people who are no longer a part of my life, they werent real friends or family in the first place. Cause if they were, they would still be a part of my life. Those who are left, are the ones I truly cherish. I work part time, I engage myself in activities that I like and go about my business. Today is a good day. Tomorrow could be a bad one, but I am prepared for it.
In October of 2013, God willing, I will be in Austin, Texas. I have already made plans with a member here to meet up. If anyone else from the Texas area would like to meet us, please do. When it gets closer to the date I will post where we might be able to meet. It would probably be the hotel that we are staying in, as I am not from the area and would not know where to go!
I wish everyone the best of luck in finding inner peace while dealing with their illness. When I first became ill, it was so devastating, as I had been misdiagnosed and what I believe ultimately got me through the original rough patch was I repeated this every day, "God helps those who help themselves."
God helps those who help themselves.