View Full Version : new member looking for someone who understands my pain

06-03-2007, 03:41 PM
I'm a Lupus patient, newly diagnosed, that just wants to talk with other people that are going through the same thing that I am.

06-03-2007, 07:47 PM
You have come to the right place! I'm new to this, too. My GP said "probable lupus" in April. I don't get to see the rheumy until July, and its very hard just being in limbo. The folks on this listserve have been wonderful. I have learned a lot and now everything has been making sense to me. The way that I've been feeling for the last 7 years now makes total sense. Have you seen a rheumy yet? Good luck to you, and keep us informed. If you have questions, there is always someone on this list who can answer them.

06-04-2007, 08:05 PM
I understand and I never get tired of hearing about Lupus b/c no one I know has it or understands the pain that goes with it. They look at you like you're not really sick b/c your arm isn't falling off. =) I have 4 children so I would love to talk with you any time you need to or if you have questions. I was diagnosed 8 years ago so Lupus and I know each other very well. :D

06-05-2007, 10:37 AM
Hi Mlarie :lol:
You will never find anyone here who will not be willing to listen to you, to answer your questions, to provide information or to give you support and comfrot. We are here to help you in any way that we can, as much as we can and for as long as you need it!!
Being newly diagnosed is rather frightening, but do not let it overwhelm you. It is not the end of anything, it is just a change!

Peace and Blessings

06-05-2007, 12:46 PM
Hi Mlarie!

I am 39, mom of 2 nearly grown daughters. (19 and almost 18 ) I am married to a great guy who I adore, and who takes great care of me. I am a lucky woman!

I, like you, tend to not share my physical ailments with my friends--actually, I have a hard time even acknowledging them to myself--because I do not want anyone (especially me) linking Kristin=sick, and sick=Kristin. I want to be known for what I can do, not what the illness does to me.

People who do not experience for themselves the different aspects of having a daily illness cannot understand one that does. They try--certainly they try--and are sympathetic when they can be... but there are times when I see "the look" from a friend or acquaintance that tells me they are doubting my sincerity. That bothers me deeply. But I understand--that they do not understand. Hence my decision not to share. Most people know that I have it--but they don't need to know the daily diary of what's happening "now"... I only say something when I believe it's important--ie. I can't carry heavy things; My heart is acting really badly; I am too out of breath to talk on the phone today...

There are many people here that are SO knowldegable regarding Lupus and its many faces. I have learned a lot, and have tried to input some of the things I have found out, too. I think you'll like it here. It's great to know that there are others out there--that you're not alone--and not lazy or crazy or what-ever.

Have a peaceful day,

06-06-2007, 02:42 PM
Hi MLarie!

Welcome to the Forum! :D I'm glad that you found us! :D

Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you!

Keep well! :)

06-06-2007, 02:59 PM
Thank you to everyone that wrote to me. I appreciate being so welcomed into this group. It feels good to have the support!