Lupus is a mimic disease whose sufferers are often diagnosed with and suffer from a multitude of ailments before the Lupus is correctly diagnosed. Symptoms range from mild to wholly debilitating, and the "lupie" will likely experience both extremes, much to the confusion of observers. "But you look fine!" or "But you were fine yesterday!" or even "But you could barely move last time I saw you!" are common refrains to the lupus-sufferer. People just don't understand how fast or slow symptoms appear and disappear or realize that the effects of the disease are not always visible.
My mom has to depend on chemical tests to tell her how she's actually doing and to determine her medicines and doseages. Some days she's only in moderate pain, while other days she shuffles along in extreme pain. Sometimes that shuffling has *invited* annoyed ridicule, not always hidden, from observers. Mom says nothing. Like many with Lupus, Mom is not a complainer and does not want to use the disease as an excuse even though it is usually the cause of whatever perceived behavior (really just a visible symptom of the internal physical ailment) is troubling her.
In late 1998 Mom's doctor decided she could stop taking prednisone! But in late 1999, after my grandpa died of stomach cancer, Mom had to begin taking prednisone again. She also appears to have Fibromyalgia--or at least enough pain to feel like she has Fibromyalgia. Nevertheless, like many with Lupus who don't want the disease to *stop* them, she continues to volunteer at the local hospital and other places.
I hope this page will be useful to others who are interested in Lupus for whatever reason.
Asociacion Lupus Argentina --a Spanish-language site (gracias a Mari)
Autoimmune Diseases at CliniWeb
Bem-vindo ao Lupus Brasil --a Portuguese-language site
CNN Report on finding Lupus genes
Connective Tissue Disorders at MedCheck--SLE
Lupus Erythematosus Page at Univ. of Washington, Seattle
Lupus Forum, Dep't of Neurology, Massachusetts General Hospital
Lupus Foundation of America, Inc. Main Page
Lupus Home Page at Hamline University --this link is full of information about Lupus and tells how to join several Lupus mailing lists.
Lupus prognosis article at Mayo Health
#lupus --DalNet Lupus Support Group and Clean Chat
Mayo Clinic Health Oasis Daily News
Mining Company's (now About.com) Lupus Resources
Moderated Lupus list at Acor.org
On the Road--Stories of Lupus for a documentary
Pathology of SLE at Univ. of Utah
RxList--The Internet Drug Index
SLE page at the National Jewish Medical and Research Center
Systemic Lupus Erythematosus page at MedCheck
Victorian Lupus Association Inc.--an Australian site
Welcome to the Lupus Letter Website
Carol Klarich's Home Page --with Lupus links
Cyndee's Lupus Home Page--Living With Lupus for 30 Years
Honeybee's Hive --with Lupus links
Joanne and Muffin's Homepage --with Lupus links
Mick's UCTD and Autoimmune Page --with Lupus links
Sara Cargill's Lupus Home Page
 |
This Lupus Awareness Ring site is owned by Rebecca Lambert. |
|
[Skip Prev] [Prev] [Next] [Skip Next] [Random] [Next 5] [List Sites]
<a href="https://members.tripod.com/~Ilesa/Lupus/masque.htm">Masque of the Wolf</A>
If you have a page you'd like added to the
listings, please let me know.
E-mail
the webmaster: lambertr@cei.net
Last updated 16 May 2000
Do you want a graphic logo to link to this site?
And look! This page won an award on 14 May 1999 for being in the top 50 Lupus resources from Links2Go.
--The wolf eyes photo comes from Papagei Studios.
--I made the bordered background (my first one ever!) using Paint Shop Pro 5. If you want to borrow it, please give me credit!
--I got the Celtic MD Decorative font for the title from Kyl's Medieval and Fantasy Fonts.