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Discussion Starter · #1 ·
:sad: Where should I start? I was told that I have lupus and at first I had that nervous laugh and then I wanted to cry, but ended up laughing with the doctor. I'm trying to be strong and at times find myself wondering off into space trying not to think about it or talk about it, because i dont think anyone would understand how I feel. My family is being supportive but I think they dont know what to say or how to handle it, when i say just give me time to myself. I'm on plaquenil and so far I've heard some good things about it. Just dont know what to do with myself. I'm scared and confused. :(

shorty67.....
 

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Hi Shorty,

Welcome to the board. It is nice to meet you. You have found a wonderful site with good information and wonderful caring members.

It is a diffcult time right now for you. When I was first dianosed with sle it was a roller coaster ride of emotions. (still is some days) (((hugs)))

It is good you were started on plaquenil. Are you on any other meds? How is lupus effecting you? Lupus can effect everyone differntly.

It is good your familly is very supportive. They are going threw emotions right along with you.

You have found the right place to ask questions. do a search, or just want to express what you are feeling.

Take care and let us know how you are doing. You said you were dxed 5-5-08, did you get the dates mixed up?

:posy:
Lyn
 

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Dear Shorty

I am glad you have a diagnosis but at the same time i am sorry you have to deal with this not so much fun disease Lupus.It is a roller coster ride for sure with it because we just do not ever know what is around the corner.

One thing i do try to do is to laugh a lot more about life.You will find a lot of wonderful people on this sight to vent to as i like to call it anyway.You can ask all kinds of questions and someone will always try to answer them for you.We are here for you in whatever way we can help you through all this.
Hope you find everyone here to be your friend :) like i have ;)
Tammy
 

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Hi Shorty,

It will take awhile to digest your diagnosis. In a way you are happy to have an answer, but then there is the fear of how it will affect you. My advice is to take it a day at a time. Try to get plenty of rest. Let your family be your rock. They may not understand how you feel, but they do hate to see you suffer and want to be there for you.

In time you will learn to listen to your body. It will give you signals to tell you when to take extra care. You may also find things such as the sun that trigger your flares. Each of us is different.

Feel free to vent to us. We have all experienced the fear, the disappoints, and frustration. This is an amazing group of people here to both help and learn. I look forward to seeing you in the chat room some day.

Take care,
Lazylegs
 

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Hi Shorty!

Welcome to this site! I wish I could give you some help but really I can't!! I was DXed in Feb so also on a huge learning curve.
I think that being in touch with others in the same boat will definately help though. So well done for joining this group and being so proactive!! I look forward to getting to know you!

Keep your chin up!
ColleenT
 

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Newly diagnosed ~ my story...

Welcome Shorty!

I know it's a shock to be told you have "LUPUS"..... it's a scarey word. And now you've got it. But what does that mean to you...and, what exactly IS Lupus anyway??

If you're like me, you went online and tried to find out anything & everything about this disease. Some info probably scared you - like it did me. But Lupus is different for everyone - remember that. The good news is, it can be diagnosed early now, and that's a big blessing. Your knowing about it is good, and you'll probably never encounter the major health issues you've read about. So don't dwell on the bad stuff!


My best advice to you & anyone reading this:
Beware of the guilt trip this disease can put on you.
Educate your loved ones. Go to a support group or seminar, at least once.
Don't ever feel guilty when you need to say "NO, I'm just not up to it today."
Be positive...mind over matter really works!

nitey nite -

Dayle
 

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Discussion Starter · #7 ·
keebler;507429 said:
Hi Shorty,

Welcome to the board. It is nice to meet you. You have found a wonderful site with good information and wonderful caring members.

It is a diffcult time right now for you. When I was first dianosed with sle it was a roller coaster ride of emotions. (still is some days) (((hugs)))

It is good you were started on plaquenil. Are you on any other meds? How is lupus effecting you? Lupus can effect everyone differntly.

It is good your familly is very supportive. They are going threw emotions right along with you.

You have found the right place to ask questions. do a search, or just want to express what you are feeling.

Take care and let us know how you are doing. You said you were dxed 5-5-08, did you get the dates mixed up?

:posy:
Lyn
Thanks for the support. Its nice to meet you, also. My first visit was 4-21-08and I got my results on 5-5-08. I've been having problems for awhile, like someone ran over me with a big mac truck and I was always tired. My family dr. started noticing my ana count was rising from 1:140 to 1:60, then straight to 1:80. Most of my problems is pain.
 

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:) Hi Shorty, and a warm welcome to this great site. We all know what you are feeling, you will go thru every emotion that there is. Your family and friends will try to be very supportive, but they actually don't know what you are feeling. I live by two rules; 1-the sun is your enemy, and
2-stress=pain, ( memorize #2) Also, try to learn to pace yourself,like set the table and get out the pots and pans for dinner, then rest, then begin cooking, then rest, and so on,
it's one of the easiest ways to help with the pain. Plaquinel is a great drug, and I know of no side effects, it will take 3-6 months to kick in, maybe more. Learning to live with, and how to live with Lupus, took me a few yrs, but this is the place where I got my most support. So, begin reading
the information at the front of this site, and ask anything you want, we are glad you are her with us.:rolleyes:
 

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Hi Shorty,:wavesmile:

Sorry about the date mix up. You are not the one who was mixed up, it was me. I was still in the month of April yet. I even made out a check today and put 4-9-08.:oops:

Yes, I know that feeling of being run over by a mac truck. I say sometimes it has backed up a few times too.:wink2:

Has you doctor given you anything for pain? Do you see a rheumatologist that knows lupus. Not all of them know how to really treat lupus.

Here is a link on this board that helps explain to friends and relatives how we feel with lupus. You could show that to your family.

http://www.thelupussite.com/forum/showthread.php?t=67968

Take care of yourself, I hope to see you around on the board.

:foryou:
Lyn


 

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Hi Shorty

Sorry to hear you've joined the loopie gang - I am newly diagnosed myself and am on a steep learning curve - I can't really offer any advice as I am new to it all myself - but all I can say is be kind to yourself - you're not alone! I'm on plaquinel too - it's ok - nothing nasty and it does help alot with the pain, fatique and rashes. Be patient with it though - it takes ages to work!!

Oh and one more thing - I've learnt over the last few days that sun doesn't suit lupus - so take it easy in it and use a good suncream!

Let the journey begin hey!!!:blink:
 

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Discussion Starter · #12 ·
Its Okay

Its okay Keebler, and yes I'm seeing a rheumatologist who specialize in lupus. Just the plaquenil hope I spelled it right,:hehe: I just try to rest when it starts in.
 

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Hello Shorty, from another short person! Known to my children as Dwarf! (well they are taller than me)

You will be amazed at how fast you learn things here. I have been lupie for many years but only on this site for just over a year, and the people here are wonderful. It is always busy too so there is always something to catch up on reading.

Best Wishes to you,
x Lola
 
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