View Full Version : Writing about my lupus experience

09-05-2013, 01:32 PM
Hi everyone. I wanted to introduce myself and say hello. My name is Kayla. About 11 years ago, I was diagnosed with lupus and found a support system on message boards like this one. Since then, my life has really changed and I was asked to write about it in a blog for the Huffington Post. I thought I would post it here in case anyone was interested and also, because I want to reach out to the rest of the lupus community to ask you if there's anything in particular about healthcare and/or lupus that you want me to write about in the future.

Unfortunately, I'm unable to post the link here since I'm a new poster, which is fine. :-)

I'm still happy to be a part of this community and chat with you guys.

09-05-2013, 07:31 PM
Hi and welcome. We had to take some strict precautions a while back after having to shut the. Lard down to new members due to an influx of spam. Sometimes it gets in the way. It it has allowed us to re-open the. Lard to more members so it is worth it.

Welcome to our WHL family. I look forward to getting to know you!

09-05-2013, 08:33 PM
THATS FANTASTIC!! You should write about the little things that lupus affects, like for me it's the lupus is ruining my teeth and I get muscle spasms. No one but us lupies really know that we go through things like that constantly and it's almost as bad as the lupus it's self.

09-06-2013, 07:54 AM
You asked. I'd like to see more in the press about Lupus being one of the "invisible" diseases. How, just because we look fabulous (I know all of us on this forum look AMAZING!!! we lovely lupies!) doesn't mean we don't feel lousy. I've started a thread or 2 about that particular topic and even did an experiment where I dressed down, wore a lot less makeup and finally coworkers claimed I didn't look like I felt good- DUH. If I looked on the outside how I feel like on the inside most days, zombies would be an improvement...

01-27-2014, 11:04 AM
Hi my name is Alicia. I was diagnosed with lupus a month ago.
I feel so alone. Nothing I take seems to work. Any advice maybe?
How I can feel better? I'm so sad all the time.

01-28-2014, 05:16 PM
Hi Alicia;
I am so sorry to hear that you are sad and lonely. This disease can make us feel that way. We feel that we've lost the healthy life that we once had, that no one truly understands what we are feeling or what we have to endure, that our life will never get better.
Here at WeHaveLupus, you will find that we all truly understand, that we know how lost and lonely you can feel and that we want to do all that we can to help you so that you realize that You Are Not Alone!!
We advocate that, yes you former life may indeed to be changed. However, we help one another to find "A BRAND NEW ME!!" (also known as "our new normal"). Amongst people who care and understand, you can find answers, information, advice, and support. That is what we do here. Most importantly, we want you to know that you are part of a caring family who wants only to help you in any way that we can.
I am glad that you are here...once again.....welcome.

Peace and Blessings