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SuperGiv
11-14-2008, 05:04 AM
Hi i recently got diagnosed with SLE and decided to come on here as i've been having a bit of a hard time coming to terms with how limiting this illness is. Im 19 and recently started at University, and being away from homes not made it easy, so its nice to have somewhere where i can chat with other people the same as me. :D
So yea, hi everyone :D

KathyW1958
11-14-2008, 05:18 AM
Hi SuperGiv,
Welcome to the site. My name is Kathy and I also have SLE Lupus. I have had this illness for a very very long time. I will be 50 in December. This is a really good site with a lot of great folks that come in here. I know they have helped me deal with this illness. For years I didn't deal with it well at all.. Unfortunately with this illness there are a lot of limitations. Feel free to ask anything you want. I hope to get to know you.

Hugs,
Kathy

Saysusie
11-14-2008, 08:19 AM
Hi SuperGiv;
Welcome to our family. I am the moderator here (along with Rob & St. James) and I've lived with Lupus for 20+ years (Diangosed in 1985). Currently, I am considered to have been downgraded to mild Lupus, but I also have several overlapping diseases that are causing me quite a bit of grief right now.
You've come to the right place to find people who understand you, who understand your symptoms, and who understand how life can be changed with this disease. You will always find that there is someone here who is more than willing to share with you and to answer your questions.
I'm so glad that you found us and that you joined us. You are never alone when you are here with us.

Peace and Blessings
Saysusie

SuperGiv
11-15-2008, 12:08 PM
Aww thanks guys, its nice to have somewhere to turn, cause all my close ones are worrying a lot about me, so i don't like going into too much detail with them,whereas here people will understand :D

coltsfan
11-15-2008, 07:22 PM
Hey SuperGiv,
Just wanted to stop here and say hi. Isn't it great to talk to others who know what you are talking about? It is very weird trying to explain to someone else how you feel, or not feel horrible when someone asks and you say, oh I hurt here and here and I am so tired...you know what I mean I am sure.
Anyway, welcome. I look forward to getting to know you and chat with you.
Robyn

buddhabelly
11-18-2008, 06:53 PM
Hi SuperGiv! Welcome. :)

I was first diagnosed close to 3 years ago. It was rough in the beginning. I was diagnosed with a disease I never really heard about it. So, I was scared and alone.

Only my closest family and friends knew I had SLE Lupus. In the beginning, I had fevers, rashes, weightloss, hairloss, aches/pains, swollen fingers, weakness, hmmm, musta missed some stuff, but I had it all. Had to call out of work a lot. Didnt want to tell my coworkers what I really had, didnt want them to treat me differently, or ask me what it was, didnt want to bother.

I, too, have close ones that worry about me. But, I, try not to complain much with them. I think they hear my aches and pains stories too many times. So, Im glad that I found this new great family, who understands what Im going through.

So, welcome and post up again, we'd love to get to know u more. :)

SandraC1983
11-18-2008, 07:03 PM
HI FROM NEW MEXICO AND WELCOME IM NEW ALSO IF YOU NEED ANYTHING LET ME KNOW

SuperGiv
11-19-2008, 08:05 AM
Hey thanks for all the responses guys! I agree that its nice to come and speak to this 'family' although im lucky cause all of my friends and family have read up on the illness so have a better understanding now :D
I've been quite ill the past few days which is annoying cause i've been finding ti hard to get into Uni the past few days and have missed a few lectures :S Doesn't help my legs either that i live on the 4th floor of a building with no lift so the stairs kill me :S Ah well hopefully will be better in a few days. :(

KathyW1958
11-19-2008, 09:08 AM
Hi SuperGiv,
I am sorry to hear that you are not feeling well right now. I hope that you get to feeling better. I am getting over a cold right now myself and am finallGy starting to feel better as far as that goes. God Bless.

Hugs,
Kathy

sick n tired
11-20-2008, 09:44 PM
Hey Supergiv,

Welcome to the site...I have a daughter who is your age...she has had some serious illness' too...last year she had to wihdraw from university because they thought she had cancer and had to have a major surgery.

How far from home are you? I hope close enough for you to get help when you need it.

I look forward getting to know you better.

Oluwa
11-20-2008, 11:34 PM
Hi Supergiv...

Welcoming you with open arms..squeeze.

It can be a very limiting disease, but if we learn to manage it and prevent flares it can be a good life. We all strive for intermission from it...

Again welcome...see you around...

Keep well.
Hugs,
Oluwa

SuperGiv
11-23-2008, 12:16 PM
Hey Supergiv,

Welcome to the site...I have a daughter who is your age...she has had some serious illness' too...last year she had to wihdraw from university because they thought she had cancer and had to have a major surgery.

How far from home are you? I hope close enough for you to get help when you need it.

I look forward getting to know you better.

Hey, im about 100 miles from home atm, but it isnt too hard to get back home on the train and my boyfriend lives in the same city, im hoping i cant stick at Uni, it shouldn't be a problem unless i get worse.

sick n tired
11-23-2008, 07:57 PM
Try to get plenty of rest, hon...no all nighters or anything..

Are you familiar with the spoons theory having to do with lupus? If not go to the site: www.butyoudontlooksick.com you will be able to read about that theory, but it has to do with energy conservation and how we only have so much energy allotted to us a day and how to deal with that.

I hope that this semester is a great one for you...actually it is almost over.

rob
11-23-2008, 09:05 PM
Try to get plenty of rest, hon...no all nighters or anything..

Are you familiar with the spoons theory having to do with lupus? If not go to the site: www.butyoudontlooksick.com you will be able to read about that theory, but it has to do with energy conservation and how we only have so much energy allotted to us a day and how to deal with that.

I hope that this semester is a great one for you...actually it is almost over.

Hi SuperGiv,

The site she mentioned is really a good one. "The Spoon Theory" has become pretty much standard fare for dealing with Lupus. Check it out, I think you'll like it.

Rob

SuperGiv
11-24-2008, 05:02 AM
Hi SuperGiv,

The site she mentioned is really a good one. "The Spoon Theory" has become pretty much standard fare for dealing with Lupus. Check it out, I think you'll like it.

Rob

Ah wow thats ace, its such a hard thing to explain lupus to people, usually im just like 'err i cant walk very well n im just stuck in bed atm so i'll meet you in a bit' but now I can bombard them with this :D