Hi there. My name is LiAnne and I have Lupus. I searched online for a place to interact with others who suffer some of the same symptoms I do, and to join in an exchange of information, support, ideas and friendship.
From what I've read here already, this is really a warm, caring group. That sounds like just what I need. I am a very empathetic person; actually I think most people with serious illnesses or long term pain are quite empathetic. We've been there, so we understand.
I look forward very much to chatting with you and learning from your experiences.
Hi there Sunshine, thanks so much for responding. I really appreciate it. You know, I think you are so right about finding help and support here. I've only been a member a day or so, and yet I've already learned (From Lupus Resources Discussion) things about the forms of Lupus I have and the symptoms that go with them. What a great place to be this is!
You say such nice things. You have a talent for saying profound things in just a few words. You make a big difference to a lot of people, I'm sure. I know I'm one. Thank you for your comments and messages, they mean alot.
now how did you do that? The way you made your point (about how I say cool things that help people ) by saying something profound in just a few words...whoa!!! very cool
WELCOME!! WHAT A GREAT SUPPORT SYSTEM WE HAVE HERE.FEEL FREE TO ASK OR SHARE WHATEVER YOU PLEASE.WE ALL LOOK FORWARD TO GETTING TO KNOW YOU AS WELL.TAKE CARE AND I HOPE ALL IS WELL
Thanks for the warm welcome! I've seen the awesome way that sincere empathy has been shared so freely here. Speaking from experience (from both sides of the tear-drenched kleenex) I can say that the right words, shared at the right time, can mean the difference between life and death.
I look forward to getting to know you all as well.
hey, sorry if i embarrased you...just love words and enjoy it so much when another word-person comes along. When I was little my brother and I used to go with grandpa to the peanut mill where he worked (mom and grandma worked there to) and Kelvin and I sat on burlap bags pretending we could read the Worldbook Children's Encyclopedia. Niether one of us were old enough to read but it was still our favorite past time.
then my uncles teased us mercilessly with words we didn't know; they could make them sound like something vile or shameful ( and we loved it) -- things like, "You have epidermis! " or "Eww you have ancestors and I saw you hesitate on the doorstep!" to which we replied, "No we did not! Leave us alone! I'm tellin'...Grandma...Raymond said we have epidermis..."
And then later my mom and I could entertain ourselves by going to Denny's with a dictionary; we could drink coffee and feast on weird words for hours. so how could i have turned out any other way?
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but i will contain my enthusiasm ^^^&^^^ (the pic is a Cheshire cat holding in a grin)
Hi LiAnne, i remember the name Kaylan, so i think i have already welcomed you, but if i havent i am now doing so. Its lovely to meet you. This is one of the best sites to come to, if not the best i think. I have looked at a few others before, but there wasnt so much involement i found. Its so lovely to be able to talk to people who do actually care about each other. We are all here for the same reason, so we cant help but understand and empathise with how someone may be feeling. I have found this site and LWL friends so helpful and such comfort when i am feeling awful. I hope you enjoy being on her aswell. I wont go on, i have a terrible memory until i have known someone for a while, so i apologise if i have already sent you a message, bye for now, love and hugs Astrid40xoxo
Oh not to worry Janice. I have never been good at accepting compliments, but thank you very much. I too, love words and from as far back as I can remember a huge goal of mine was to learn all the words I could. I absolute love reading...I will gobble up a good sci fi story, or a non-fiction biography, or even a history book equally voraciously. I guess it probably comes with the territory for me...I know I talk way too much, so it's only natural that I'd get fairly good at using words, eh?
Thank you again, and don't think I was serious...just goofing around.
Take care!
janice said:
hey, sorry if i embarrased you...just love words and enjoy it so much when another word-person comes along. When I was little my brother and I used to go with grandpa to the peanut mill where he worked (mom and grandma worked there to) and Kelvin and I sat on burlap bags pretending we could read the Worldbook Children's Encyclopedia. Niether one of us were old enough to read but it was still our favorite past time.
then my uncles teased us mercilessly with words we didn't know; they could make them sound like something vile or shameful ( and we loved it) -- things like, "You have epidermis! " or "Eww you have ancestors and I saw you hesitate on the doorstep!" to which we replied, "No we did not! Leave us alone! I'm tellin'...Grandma...Raymond said we have epidermis..."
And then later my mom and I could entertain ourselves by going to Denny's with a dictionary; we could drink coffee and feast on weird words for hours. so how could i have turned out any other way?
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0 0
but i will contain my enthusiasm ^^^&^^^ (the pic is a Cheshire cat holding in a grin)
Thank you for the warm welcome, I appreciate it very much. You know what you said about understanding and empathy that is shown here. . .it really seem genuine. SO many people suffer without emotional support, it is terrible. But that is one huge way the internet has been such a blessing to so many...it enables us to "get together" and share our thoughts, our heartbreak, our frustration and our happiness with each other.
I learned something....there may be a lot of people who sympathize with us, and a lot of people who pity us...but none of that is as helpful or life enhancing as those who empathize with us. That means they know how we feel. To me, that is a big difference. And I have found that empathy here already, in a large way.
I have a terrible memory too (I blame it on my kids!) LOL so I can understand. But don't worry about it. A welcome, is a welcome thing anytime!
Hi Kayhland, Thankyou for your lovely message. Yes we are lucky to have people to talk to who understand. I never used to use the computer much, but just lately i have used it alot more, and i am so glad i have. I never used to understand why my husband was using it so much but now i do, he goes on chat forums. He is really into music and loves to use the internet to speak to his friends when he cant get round to see them. I agree about the empathising and pitying, we dont want pity, just abit of understanding and empathy some times. I dont think the average person can do this, as they dont usually have a clue what we go through. My memory loss is through the brain involvement i have, i can be talking to someone and i will forgot the word that i want to use, its worse some days than others. I forget the names of people i have known for ages, it can be really embarrassing, i have explained to the people that really matter whats happening. I also have epilepsy which i dont think helps with things like that. I am on antibiotics at the moment for an ear infection, and MRSA and just over the weekend i have caught flu, i am so fed up with it all. I was only saying to my husband earlier, it seems to go in stages where i just get one thing after another, then i might have a few weeks where i dont catch anything. I,m in the phase of getting one thing after another. I also had some sickness earlier today, so i went to sleep for a few hours which has helped a little bit. I am going to have an early night tonight, not that i really have late nights now, i just have broken sleep through the pain etc. I would love to have more than 2 hours sleep in one go, i always think that two hours is really good for me. I get up and get a drink, maybe go back to sleep again, then wake up again another hour later, its no wonder i feel wiped out some days hehe. Anyway i will go now, take care, look after yourself, love and hugs Astrid40xoxo
I just re-read your profile page and I feel like I must have some kind of weird information/cognition defect. As I read the words I remember reading them the first time; what I don't remember is the emotional reaction i had to the content! I know the person who experienced such trauma can block the feelings, but until now I didn't realize a person just hearing the news could block the pain as well. but i guess it is part and parcel of the age we live in where we can watch horrific events on the news during dinner hour and then just saying, "Oh that's awful, pass the potatoes."
Can we start over?
I can't begin to fathom the strength you must be endowed with to have experienced all the pain from the accident, all the physical and emotional trauma, only to have the insult of Lupus's added to injury.
i am so sorry for all that you've lost. Did you see the Time to Mourn group? It is there for you if you ever need it (and by "it" I mean a place to hold your feelings and a place where others will be waiting to help you through.)
You must have phenomenal strength and I feel honored to call myself a friend of yours.
oh look, someone took a picture of us as children in Anything Could Happenville: there is you and me, i'm the squirrel y one
HI There LiAnne, i just happened to notice you were saying about being able to block pain. I used to be able to do this, anything physical or emotional. I didnt understand what it was i was doing at the time, until i spoke to a therapist who said what i was able to do was called Transindental Meditation. I am less able to do this now, i think mainly because i have talked and tried to help myself deal with my emotional pain. I have also been through several trauma's in my life, and i am lucky to be here. And also two years ago i lost my Father, Grandfather and best friend all in the same month. My Grandfather died the day after my Father, and my best friend a week later. We were very close, and we had each others door keys in case one of us was so ill we couldnt get to the door. My friend had alot of serious health issues, she was diabetic, walked with crutches as she had bone problems, and we sort of supported each other in whatever ways we could. I had been trying to ring her one day after she had a sort spell in hospital, and i hadnt got any answer, so i thought maybe she was having a sleep, and i would try again later, but every time i called there wasnt any answer, which wasnt like her at all. So i walked round to her place, as it was only one road away, and i found her in her bed, she has passed away, it was such a shock to find her like this. I knew she was very ill, but never expected that to happen. My father had cancer, my grandfather was just through old age really, bless him. Anyway that year and the year after have been so hard for me, i think i was blocking out how i was feeling, as i would leave things that were really important like filling in forms and other important things. I have only just started to get myself back together and getting abit more organised with things now. Although of course at the moment i am not doing alot apart from resting in bed until i get rid of the dreaded MRSA bug, i am on the antibiotics which at first i will have to take for three weeks and just rest until i am better. Sometimes it does feel just as you are getting on your feet again, something else comes to knock you back down again eh, we have to try and be strong whatever happens in life, although easier said than done at times. Anyway i hope you find it helpful talking to others about whatever you have experienced. I know i have found it a great help knowing that people have been there for me when i need them the most. Take care, bye for now, love and hugs Astrid40xoxo
Again you have managed to touch my emotions in a good way, even though some of what you said brought tears to my eyes.
I don't really think of myself as a strong person. In fact, just the opposite. What you see as strength, to me is nothing more than coping, in my case. I absolutely cannot speak for anyone else. But, if there were true strength in my character, I am sure I wouldn't be bogged down under such deep depression as I have for so many years. I wouldn't by any means be perfect, but I am sure that if my personality had more fortitude, I'd have been a much better mom, sister, daughter, friend. All the tedious details of my soap opra-ish life could have stayed buried and I would have been able to get on with things rather than always looking backward. But, I appreciate your kind words and your generous compliments, I really do.
Boy though, talk about a cognitive defect. . . I can't believe how single-track minded I am. I've managed to be a member here for several days now, and I hadn't a clue that there was a "Time to Mourn" group somewhere on the site. Thanks for the tip, because I'd really like to find it.
Oh I love that photo of us as "kids"! But you know you are way more photogenic that I am, it just proves your side of the family got all the good-looks genes! <giggle>
Take care and know that I care.
janice said:
LiAnne,
I just re-read your profile page and I feel like I must have some kind of weird information/cognition defect. As I read the words I remember reading them the first time; what I don't remember is the emotional reaction i had to the content! I know the person who experienced such trauma can block the feelings, but until now I didn't realize a person just hearing the news could block the pain as well. but i guess it is part and parcel of the age we live in where we can watch horrific events on the news during dinner hour and then just saying, "Oh that's awful, pass the potatoes."
Can we start over?
I can't begin to fathom the strength you must be endowed with to have experienced all the pain from the accident, all the physical and emotional trauma, only to have the insult of Lupus's added to injury.
i am so sorry for all that you've lost. Did you see the Time to Mourn group? It is there for you if you ever need it (and by "it" I mean a place to hold your feelings and a place where others will be waiting to help you through.)
You must have phenomenal strength and I feel honored to call myself a friend of yours.
oh look, someone took a picture of us as children in Anything Could Happenville: there is you and me, i'm the squirrel y one
