Just bringing up a idea ,after carefully reading the topic have you lost friends that I posted it appears quite a few of us have been treated somewhat different since we have been diagnosed with lupus.I was suggesting maybe since we all are going through similar obstacles with our bodies and dealing with this first hand and sometimes you feel like you are alone, we have this support system online why don't we start another one ,anyone who resides in Ga and from time to time like to meet whether it is ,movies,coffee or tea, meet at a book store read up on lupus or just read,Out to eat,just being in the company of people who care and love you outside your family,We are not hibernating from others but we will not deal with rude or sarcastic comments from others they are welcome.I feel and I know it is hard because you may wake up and you are feeling ok and later that morning you may start to ache,you just don't wanna go,All I am asking is for us to spend sometime together pick a day out the month and we meet up , I feel once you start spending time with others who share your feelings you will start to see you are not alone and become more knowledgeable and you can put a face with a name.Just a thought, please respond accordingly, I know we all have busy schedules and don't feel our best but it has been so long since I have been able to do anything mentioned above , I don't wanna live my life sheltered, Only if you are able I truly understand if you cannot,don't let this disease beat you,be strong we can be united,maybe even participate in one of the lupus walks.
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Lia,
This is a wonderful idea... I know that I have lost many friends in state and out of state. Even some family members just don't get it. I live in Tennessee and I know I hate going out by myself, who wants to go out to eat by themselves, nothing wrong with it, but I spend all day by myself (except for my father). Hope this finds you doing well today :)
Lia, We must be kindred spirits. I feel the same way. My working career was with people and do feel isolated from the mainstream world now. Even though we feel crummy, maybe we wouldn't feel too crummy to befriend others in our situation in person as our expectations are where they are and that's it! Unfortunately, I'm in Southern California so couldn't be a part of your group but who knows, maybe you're on to something!
What a awesome idea JC, I live in Houston Texas and when I do feel like getting out, I like to roll in my scooter chair and shop, of course, I won't last long, but I enjoy it while I can. I hope your idea will come to life. Many blessings and hugs
WOULD LOVE FOR YOU TO RIDE THROUGH ON YOUR SCOOTER , YOU ARE WELCOME ANYTIME AND IT DONT MATTER HOW LONG YOU LAST WE ALL CAN RELATE AND LOVE YOU.REMEMBER YOU HAVE LUPUS ,LUPUS DONT HAVE YOU REBUKE IT YOU SOUND FULL OF SPRIT AND I LOVE YOUR NAME (FIGHTER)
YEAH i CAN RELATE,LUPUS SHOULD ALSO STAND FOR LONELINESS,i AM SO HAPPY YOU ARE ARE ABLE TO GET AROUND i AM JUST STARTING AND BETWEEN THE PAINS AND MEDS SOME DAYS I DONT KNOW , BUT I AM SO HAPPY TO BE HOME AND NOT AT THE HOSPITAL, MY BOBY AND I HAVE REALLY GOTTON TO KNOW EACH OTHER BETTER AND MY FAITH WITH GOD HAS GROWN CLOSER I FIND MYSELF TALKING TO HIM.THANKS FOR YOUR KIND WORDS AND SINCE I WONT BE ABLE TO CONNECT FROM BEING IN THE SAME STATE YOU ARE ALWAYS WELCOME TO VENT AND IF YOU HAVENT ADD ME AS A FRIEND PLEASE DO SO WE ARE ALL FRIENDS NEAR OR FAR.
Bethany Wright said:
Lia,
This is a wonderful idea... I know that I have lost many friends in state and out of state. Even some family members just don't get it. I live in Tennessee and I know I hate going out by myself, who wants to go out to eat by themselves, nothing wrong with it, but I spend all day by myself (except for my father). Hope this finds you doing well today :)
Well Lia,
I'd just to like to add this...i don't live in the states but you've brought up a brillliant issue here for other's by you and i hope it goes to how you'd like and that goes for other's wanting to meet up.
Lia that is a good idea, I wish I did live in that area but I’m in delaware. I would love to meet up with a lot of y’all. and I love to eat that rite up my alley.
Or even planning something. and a lot of us could fly to that destination. plan a trip or something like that…
Ang, you get worse mate (We wouldn't have to worry about our splotchy faces or our brain fog conversations either!)....you could all get your heads together and come up with something verbal and that would soon make them turn their heads the opposite road.lol
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
Ang it's one way to stop nosyness and a good hint never look again.lol
draginfli said:
Terri -
You always make me laugh!! ;)
Ang
Tez_20 said:Ang, you get worse mate (We wouldn't have to worry about our splotchy faces or our brain fog conversations either!)....you could all get your heads together and come up with something verbal and that would soon make them turn their heads the opposite road.lol
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
I love this idea.. I live in central florida and would love to meet with someone for dinner, movie.
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
also is there anyone here from texas i live in marshall
Helo mzfuller, I am from good old Houston, Texas Hooowdy!!! My daughter attended Wiley in Marshall for two years, and we drove up there all the time to see her. I don't do long trip that much because of my muscle weakness in my legs, but it is good to talk to someone close to home. Chat with me anytime. Many blessings and hugs.
I like your personality already, we think alike, you are right I have lupus, lupus DOES NOT have me. Just look for me I will be the one with the TEXAS liscence plates on the scooter chair with the mag wheels (lol). That would be awesome. Many blessings and hugs.
lia nuriddin said:
WOULD LOVE FOR YOU TO RIDE THROUGH ON YOUR SCOOTER , YOU ARE WELCOME ANYTIME AND IT DONT MATTER HOW LONG YOU LAST WE ALL CAN RELATE AND LOVE YOU.REMEMBER YOU HAVE LUPUS ,LUPUS DONT HAVE YOU REBUKE IT YOU SOUND FULL OF SPRIT AND I LOVE YOUR NAME (FIGHTER)
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!?
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!?
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!?
thanks for the response and I just want us to know that know matter us having this disease you still can have a life and surround yourself around people who can relate , when you tell one of us that you are fatiqued as we no a flare can come up at anytime or pains can come from anywhere,when someone is walking in the same kind of shoues you are walking in they will show more compassion.We donot have to be hermits if we can get out,we still have life ,
Kadeeeee said:
Lia, We must be kindred spirits. I feel the same way. My working career was with people and do feel isolated from the mainstream world now. Even though we feel crummy, maybe we wouldn't feel too crummy to befriend others in our situation in person as our expectations are where they are and that's it! Unfortunately, I'm in Southern California so couldn't be a part of your group but who knows, maybe you're on to something!