In the summer of 1997, my mother was diagnosed
with Lupus. Since then, I've searched the internet for information.
I've discovered that Lupus is not a well-known disease among the general
public, and those who are forced to dance with the "Wolf", as the Latin
"lupus" is translated, are misunderstood by friends, family and co-workers.
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.
|The following are the links to Lupus related
sites I've found or been directed to:
Asociacion Lupus Argentina --a Spanish-language site (gracias a Mari)
Bem-vindo ao Lupus Brasil --a Portuguese-language site
Lupus Home Page at Hamline University --this link is full of information about Lupus and tells how to join several Lupus mailing lists.
#lupus --DalNet Lupus Support Group and Clean Chat
|These are the homepages of other Lupies:
Carol Klarich's Home Page --with Lupus links
Honeybee's Hive --with Lupus links
Joanne and Muffin's Homepage --with Lupus links
Mick's UCTD and Autoimmune Page --with Lupus links
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|Other Lupus information sites may freely add
a link to this page:
<a href="http://members.tripod.com/~Ilesa/Lupus/masque.htm">Masque of the Wolf</A>
|Created 7 July 1998.
Last updated 16 May 2000
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And look! This page won an award on 14 May 1999 for being in the top 50 Lupus resources from Links2Go.
|--The font for the links is Folio Lt BT, 12 pt. and for the headings
Folio Md BT, 12 pt.
--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.