Welcome Firebabe

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Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 8/21/2007 7:15 AM (GMT -6)   
Welcome to the forum Firebabe!!! I saw your post in another topic and thought we should all give you a warm welcome!! Glad you found us and I hope you make some great friends here.

Firebabe said...

(Hi, I'm new here, but I would like you to know that I've experienced people who are just as insensitive as you have described. For awhile I was actually talking to a phsyciatrist and we came up with some conclusions on how to react to people in this situation. First of all, we talked about always keeping a smile on our face, not necessarily a genuine one, but kind of a cock eyed one (the scare tactic). Always use humor when stating your response and laugh afterwards, like the joke is totally on the other person. If someone asks you whats wrong and you tell them you have Lupus, most people will ask what that is. At that point, you tell them you have no idea but only really great people get it. Keep your chin up.

I was only diagnosed in May of this year, but my doctor has been running tests for about 3 years. I've been through alot of misery and people just don't understand. They think they are being sympathetic, but they don't know how to react because they can't experience the pain and emotions that you have to on a regular basis.

I do have to say, that your closest friends will look out for you. I have 3 people at work that if they notice I'm struggling, they will quietly take over for me, because I will refuse help if they ask. I do appreciate them. It's people like them that help me cope on a day to day basis. They do care, and they do want to know what I'm going through everyday. Hang in there. What else can you do?)

Post Edited By Moderator (Lynnwood) : 8/21/2007 12:58:12 PM (GMT-6)

Veteran Member

Date Joined Jan 2004
Total Posts : 4151
   Posted 8/21/2007 8:16 AM (GMT -6)   
Welcome firebabe!! :-)
Co-Moderator ~ IBS Forum
Co-Moderator ~ Lupus Forum 
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Klonopin PRN, Miralax 17g, Supplements


Veteran Member

Date Joined Mar 2006
Total Posts : 2570
   Posted 8/21/2007 8:22 AM (GMT -6)   

You sound like a firecracker! I like your attitude! I hope you'll join us on a regular basis. We have a great little supportive family here and we love your kind of humor and happy spirit.


Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 8/21/2007 10:40 AM (GMT -6)   
Hi Firebabe and welcome. We're glad to have you here and I look forward to hearing more from you.

Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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Co-Moderator: Lupus and CFS Forums

Regular Member

Date Joined Jul 2007
Total Posts : 261
   Posted 8/21/2007 4:47 PM (GMT -6)   
Welcome, Firebabe. You have found a great family of support here! They are very understanding and always seem to know just what to say. I hope you feel at home.
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg

Audrey Ann
Veteran Member

Date Joined Jul 2005
Total Posts : 815
   Posted 8/21/2007 10:13 PM (GMT -6)   
Welcome Firebabe!
Audrey Ann
Diagnosis: Lupus and RA
Medications: Plaquenil (400 mg), RelafenMethotrexate Injections, Folic Acid, Aldactizide for High Blood Pressure, Lipitor for High Cholesterol, Actonel for Osteopenia, and Allegra & Patonel Eye Drops for Allergies.


Regular Member

Date Joined Aug 2007
Total Posts : 206
   Posted 8/23/2007 7:59 PM (GMT -6)   
Thanks everybody for welcoming me.  I almost started to cry, but I do have to say that I've needed people to talk to who really understand what's going on.  I live in a smaller community in Wisconsin and there aren't any support groups in my area.  People here haven't even heard about Lupus and I think my family is afraid of what I'm going through, so we don't talk much about it.  I think this is going to be the best therapy for me, and I look forward to making new friends here.  Thanks again!

Audrey Ann
Veteran Member

Date Joined Jul 2005
Total Posts : 815
   Posted 8/23/2007 9:06 PM (GMT -6)   
Fantastic! We would love to hear all about you. What is your story?
Audrey Ann
Diagnosis: Lupus and RA
Medications: Plaquenil (400 mg), RelafenMethotrexate Injections, Folic Acid, Aldactizide for High Blood Pressure, Lipitor for High Cholesterol, Actonel for Osteopenia, and Allegra & Patonel Eye Drops for Allergies.


Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 8/23/2007 10:35 PM (GMT -6)   
Hugs to you firebabe. We really do understand what you are talking about.

Check out the thread titled "Lupus Resources" at the end of my signature there is a link. In that thread, about three posts down, there is a list of suggestions all the members have compiled. It might be helpful.

Also . . . when someone asks me whats wrong, I usually tell them that "My immune systems attacks my healthy tissue, this disease is called Lupus" That way, they really do have a clue as what is going on. If I say Lupus first, they seem to zone out and not even here the immune attack portion of the sentence. Then if they ask any other questions I'll answer . . . if not, it is a nice short answer to their kind concern.

Glad you found us. If you have any questions be sure to ask and the members will really try to help you.

In His Grip,
AlwaysRosie          "We can't control the waves, but we can learn to surf!"
Psalms 139
Co-Moderator Lupus Forum
UCTD (Undifferentiated Connective Tissue Disease), Hashimoto's
Healing Well:  Lupus Resources
Lupus Foundation of America (LFA) Facts and Overview: Lupus.Org
Criterea for Diagnosing Lupus:  Lupus Criterea 
Find a Lupus Foundation Chapter near you: Lupus Chapter Locator

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 8/24/2007 3:29 AM (GMT -6)   
Well I'll try this again. I posted a welcome to the group but I hit submit and it shot my post somewhere into cyberspace LOL. so I'll just say welcome and look forward to getting to know ya

God Bless
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I

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