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View Full Version : First Visit, Hello to all



cferrer56
04-09-2008, 02:42 PM
I just finished with one of those "Live Chats" that are offerred by "Major Lupus Organizations" (I know enough to not call them out by name), and left wondering (as usual) on the process of who and how a person is selected as moderator. It turned out pretty much the same old same all. I "accidentally" found your site, and wanted to "share". I am a 52 year old male with SLE, "Officially" diagnosed in the fall of 2001. My kidney biopsy made plain that I have had SLE going back 10-15 years (So my nephrologist stated), for things to have gotten so bad as it was at that time. It also shed light on the "many unexplained strange things" that I have been going thru for so long. I also have a younger sister who has been diagnosed with SLE about 24 years ago. Needless to say I am no "stranger" to this disease. I have gone thru the "proverbial stringer" for a loooong time, but thanks be to God, I am able to "maintain" some sort of life. Originally from Brooklyn, NY, now living in Chattanooga, TN for about 22 years, I still find it surprising that there were no local SLE support groups in town. I have been helping facilitate one here, and it is a struggle, but I am commited to "carry on". As if the problems with this disease is not enough, to have to deal with not only the local doctors which behave, if not really, completely lost of any current knowledge of SLE (Legal fears I believe. So goes "our healthcare system") I have trouble, with what I think are the two biggest organizations supposedly created to help "Us", in getting"support", because it seems each organization is acting as if "who gets the credit" for helping is more important than the "help" itself. I do not wish to make this so "heavy", but just felt like I needed to "vent" a little. We all know stress is our great "enemy", and have accepted that I get more "stress" from those closest to me (Hint-Family). So I have accepted, with help from a Power much greater than I, to continue to take "care" of myself and manage my treatment. Hey everyone! I have found that I receive a lot more gratification and joy (and thus, feel less of my pains) when I focus on trying to help these newly diagnosed SLE patients that show up at my modest support group meetings. These "poor" folks are scared, and seem not to be properly educated as to what to do. Lord willing I will help!

scubagramplit
04-09-2008, 02:56 PM
God bless you for your efforts to help those that are in need of it. I agree this is an awsome place to vent, ask questions, talk to somebody that understands what we are going thru. I must say that God has blessed me with a very understanding and supportive wife. She is always there with support for me and seeing what I go thru at times she has compassion for all that are going thru this.

Saysusie
04-09-2008, 03:04 PM
Cferrer56;
I am happy that you found us and that you felt comfortable enough to vent with us. I have to ditto Scubagramplit in saying "God Bless You" for what you are doing to help those with Lupus in your area. I remember my fear when I was fist diagnosed and I had no one to go to for help, support or answers. You are, I am certain, a blessing to those who've come to you.
You are absolutely right about stress and about our need to be educated about Lupus, its co-existing illnesses, its treatments, and its medications. I know that you are providing this education to those who come to your support group and I applaud you for that.
Everyone here in this forum is helpful, comforting, understanding, informative and supportive. I hope that we can provide, for you, those things that you are providing for others! Welcome to our family!

Peace and Blessings
Saysusie

Pearl
04-09-2008, 03:06 PM
I too just participated in the Live Chat and wanted to welcome you to our little corner of the world. This is a wonderful forum, filled with positive, truly inspiring people who lift one another daily in the journey toward health.

Your frustration with the Chat and with the lack of local support is understandable. I think these Chats are unable to address more individually specific concerns because of the liabilities and privacy issues related to discussing specifics over the web with a live audience. The Chats by design are intended to provide general information that might be useful to a large number of people. You never know when you tune in what treasure of information might be shared. If not for you, then for someone else who needs it. That being said, I think you have brilliantly faced the dragon by creating your own support group and by helping others less knowledgeable than yourself. I would venture a guess that you read something on the Chat today that you are intended to share with someone in your group. A blessing in disguise, so to speak. Thank you for joining us and for sharing your experience. Your courage to start your own group where none existed before is inspiring.

I hope you find comfort here.

Jana

strengthnme
04-09-2008, 03:10 PM
Hi, Im new to the boards too and i just posted my first message its awesome to see that you are so willing to help other people cope with this disease...I dont know alot about it and i have a possibility of having, people like me are scared and looking for answers so Thanks for your help...

Saysusie
04-09-2008, 03:31 PM
You Are Very Welcome! We are here to help in any way that we can!

Peace and Blessings
Saysusie

sits_inthe_corner
04-09-2008, 04:55 PM
:) Welcome cferrer56 and strengthnme

It's nice to have you two with us. I'm just on my way to find out, I've got a new rhuemy that I'm waiting to have my first appointment with.

Lupus has been in my family so I'm not new to it. I think I started displaying when I was in my late teens but very little was known about lupus back then.

So most of my symptoms just went by the wayside.