[ATS]

I am new to the board although not new to Lupus. I have had SLE for 18 years (I was diagnosed when i was 15, and am 33 now). I have had ups and downs from being disabled to being symptom free for 5 years. I just wanted a place to talk about SLE and treatments, compare situations with people with SLE and so on. Recently a friend died at 35 years old of SLE complications, so I am a little panicked and depressed about that.
anyway, hello everyone!

-A

 

[ROSJAC]

Hi and welcome to the board. I joined just last month,wished i had found this site long ago. It is a great source of information and support. I was diagnosed with SLE 11 years ago. I have lost 40% lung function due to Lupus. Never smoked but still ended up with lung disease! I am so very sorry for the loss of your friend and understand your anxiety. How fortunate you were to have been symptom free for 5 years. I pray you are given that gift again. Take care, Rosie

 

[ATS]

Hi Rosie,
i too am glad i found the board. i used to go to a group meeting in a hospital but it's so far from my job and house that i started missing it all the time. i don't know anyone with SLE anymore now that my friend has passed away so i felt really alone because i hate to discuss it with anyone that is SLE free, it seems to confuse and depress them!

anyway, i was so fortunate to be SLE free for 5 years. the clincher was catching an awful flu here in new york city and not being able to kick it. it seemed to bring it all back. oh well, i am hoping it goes away again soon!
- amanda

 

[maryfrances]

Hi Amanda--welcome! I have been diagnosed for around 11 years and have found that everytime I catch a virus it triggers a flare. Nice to see that I'm not alone there.

Maryfrances

 

[Katharine]

Hello Amanda and welcome

First of all let me say how sorry I am to hear that you lost your friend. Your sadness is very understandably heightened by worry. When something happens to someone close we no longer feel so invincible any more.

I'm sure that you will enjoy the sense of community here. As you say, it is so hard to speak to anyone who doesn't have lupus about the disease. It is, afterall very hard to imagine something you have never experienced.

It's wonderful that you were able to have five symptom-free years and I hope that you will be able to achieve that kind of stability again.

bye for now,
Katharine

 

[LolaLola]

Hello Amanda, A big welcome to you. Very sorry to hear of the loss of your friend.
x Lola

 

[ATS]

thank you everyone! i already love the site!

 

[pollianna]

Hi amanda, welcome to the forum. I am sorry about your friend :hug: You will find many people here know exactly how you feel. I was so glad to find this site too, everyone is so lovely.

See you round the board :wink2:

 

[lazylegs]

Hi Amanda,

Welcome to the site. I am glad you happened to find us. The forum is a great place to share experiences and gain knowledge. Even though I have been diagnosed for 22 years I am still learning new things all the time.

Seeing that you were in remission for 5 years might be very uplifting for our newer members. Most of them are pretty scared right now and you have given them hope.

I am sorry to hear about the loss of your friend. It is always hard to lose someone we are close to. Hopefully we can help fill some of the void.

Take care,
Lazylegs

 

[onetay]

ATS,
Hi and welcome to the site. You will find a lot of information and friendly people at this site. They are willing to help anyway that they can and very open to talk about anything really. I do hope to see you in the chat room soon. I hope you are feeling well and doing well.

 

[ATS]

i love all the pets i am seeing in everyone's pictures! i have a cat and a rabbit. (charlie and fred).
thank you for the welcome everyone. and it's true, YES, i did go into remission for a long time, so it is possible! it took a concerted effort to be positive on my part and also took some luck and strict self care and so on. but it can happen!

 

[iksyfaye]

Hi Amanda,
I am so sorry for your loss...such a young person...and your friend...you are in my thoughts and prayers...I am newly diagnosed, and as Lazylegs said, it is nice to know you had a 5 yr remission!.. I hope you feel better soon...
I