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View Full Version : It took 2 yrs to say this, better late than never...I HAVE LUPUS!



lovingred2
05-27-2013, 01:41 PM
Hello everyone!

I found this site yesterday & although I've visited many sites recently, this one really touched me & somehow gave me the courage (for lack of a better word) to finally join in & say "I have Lupus!". I've never had trouble telling people I have Lupus, but for some reason I couldn't declare it to the online world; like if I said it, it had to be true, for my internet life I guess! Silly I know! :embarrassed:

I briefly introduced myself in my "bio" section; I'm still VERY new to the site & wasn't sure where to put things. So I'm going to post that info on here as well; sorry for the duplicate info.

I certainly can't wait to share my trials & tribulations in more detail; I have oh so much to share! But more than that, I look forward to getting to know my fellow Lupus warriors, because that's what we are! I have experiences to share, questions to ask, big shoulders for you to share & cry on & probably could use some shoulders too.

Either way, I'm just glad I have a place to go where I can let my guard down, not be afraid someone will judge me or make me feel like I'm just being a baby & need to suck it up! It's nice to know I'm not alone (although I always knew I wasn't the ONLY person lucky enough to have this wonderful fun carnival ride!) & that I have a place to go where I don't even have to explain what or why, & to know I'll be welcomed, understood & supported.

Yall are awesome & I'm so happy to be here!!


Just signed up today & still not sure what to put about myself & where, so wanted to get something in here for starters. Will have to detail more later.

I have been battling major illnesses for about 5-6 years; including major sinus problems (3 sinus surgeries in 2010 & STILL infected; now including MRSA & staph) & FINALLY diagnosed with Lupus about 2 years ago. We STILL don't have it under control yet, even with being seen monthly, along with a team of docs, including Stanford Univ. The sinuses complicate the Lupus & the Lupus complicates the sinuses. I've gone through hell these last few years & finally had the courage to get online in hopes of finding some help & new directions. Found this site yesterday & although I didn't necessarily find answers to my never ending circle of ailments, I DID find a wonderful community of caring people that are going through it too & can totally understand me.

I very much look forward to exploring this site & community more, as well as sharing my experiences, lessons learned (many the hard way) & making new friends & support for this crazy disease that is Lupus!

tgal
05-27-2013, 02:02 PM
Welcome to our family! I am sorry that you need us but I am so glad that you decided to join. Please make yourself at home here. Share as you feel. Ask any questions that you have. Vent when needed. The one thing we have is that we all understand.

I look forward to getting to know you and,once again, welcome to the WHL family!

debbie-b
05-27-2013, 04:07 PM
Welcome to WHL.
I am glad you are here.
I am sorry, that you are having a hard time, especially with your sinuses.
When you said that it's not under control yet, we understand, that it might take a while, until the right meds are working for you.
You are right on the nose, when you said, that you have found a caring bunch( my words), because you have, we are like extended family here. Another good thing is, everybody here knows how you feel and what you are going through, because, we are all in the same boat.
If you have any question, just ask.

Debbie

Pink13
05-28-2013, 05:01 AM
Hi lovingred2. Welcome to the forum I am also very new to this forum and am still in the process of being diagnosed, I see the immunologist in July. I was interested to see that you complained of sinus problems! I also have these issues and up to my third sinus infection of the year (diagnosed). Has your doctor linked the lupus and sinus problems? Hope you get some relief soon.
:-)

Nonna
05-28-2013, 07:55 AM
Welcome, I actually think it's funny that you could say it. I could say it here online while it was hard to say it verbally.

Welcome and have only good thoughts

Jaynie
05-30-2013, 01:22 AM
Hi
Welcome!

I understand what you mean. I've been I'll for 23 years and I can only just admit to it. I feel guilty saying it tho! Like I'm some naughty kid who's trying to get some attention. (My counsellor is working on me LOL)

Jx