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Lupus NewsLog Thrivers


"I do not allow myself to be overcome by hopelessness, no matter how tough the situation. I believe that if you just do your little bit without thinking of the bigness of what you stand against, if you turn to the enlargement of your own capacities, just that in itself creates new potential." Vandana Shiva, Activist and Author.

Lupus NewsLog's Thrivers' Mission
In Sanskrit, there is a character which translates into obstacle or opportunity, depending on how it's read. Lupus can be the wolf that brings us down or our springboard to leap into life. Those who share their stories here will not accept defeat - they strive to thrive. This disease is so little-known that, without the power in their words, the wolf would strike in silence.They utilize their own challenges to contribute their hard-won wisdom and strengths to our community and to help others recreate their lives.
Lupus NewsLog's Own Links
Lupus NewsLog
Our Home Base
Lupus NewsLog's Articles With Attitude
Study & Sass On LNL's Reading List
Lupus NewsLog Thrivers
Our Own Stories
Lupus NewsLog Wolf Bytes
Cookin' With Chris
Recipes/Food Tips
Lupus NewsLog
Links Library

Our Large LNL
Links Database
Lupus NewsLog's Articles
Our Right to Pain Relief
Don't Suffer In Silence
Pain Care Bill of Rights
Protect Yourself
Lupus and a Wolf-Wise Diet
Nutrition News
Breathe Easy for Better Health
Real Life Relaxation Tips
Boogie Your Woogie to the Beat of Life
Dig Life In Your Own Groove
The Fat Fights - Part 1 - The Straight Skinny
Lupus and
Big Fat Lies
The Fat Fights - Part 2 -The Wolf Weighs In
Feed Your Inner Wolf Well
Obesity & The
American Healthcare Shell Game

The Fat Follies

Email Shar Phoenix
Your Lupie Scribe
LNL Thrivers ~
Our Own Stories
Patricia
"Learn To Live Again" (Invata Sa Traiesti Din Nou)
Sharon
Finding Solace
in Sharing
Julie
Julie's Journey
Kris
Running With
The Wolf
Sherry
A Survivor
Gives Her All
Chris
Taking a Bite
Out of the Wolf
John
Rewriting the Story of The
Big Bad Wolf
Sheila
She is Still Here
Shar
Living Beyond Acceptance
Lupus NewsLog's Sister Sites
Lupus Romania
Patricia and Stefan's Superb, Resourceful Site
The Lupie Bin
and Lupie Bin's Forum
Julie's Friendly Home Site and Private Haven
Lupus Ohio
John's Home at
The Lupus Sundial
LWLupus Sherry's Friendship Garden
Shar Phoenix
At AuthorsDen

New Articles, More Topics, Short Stories And More
Strange Dame
Rose Harris and Shar Phoenix rideshare life’s journey minus Thelma’s and Louise’s Grand Canyon glide.
Lupus Links
Alliance for Lupus Research
Seeking A Cure
Arthritis Foundation
Supporting Over 100 Related Conditions
Do I Have Lupus?
NIAMS
¿Tengo Lupus?
NIAMS
Dr Andrew Weil
Lupus Archive
Faces of Lupus
Everyday People
FMS-CFS-MS-LUPUS & ARTHRITIS SUPPORT
FMS and related diseases.
Get Into The Loop with The Lupus Research Institute (LRI)
HealingWell
Lupus Library
Living With Lupus
Dedicated Support
Lupus Chronicle
Hope, Support
And Humor
Lupus Foundation of America (LFA)
Changing Our Lupie World
Donate to LFA
Educate And Help Find A Cure
Become a Lupus Advocate
Help Shape the Future
The Lupus Lady's Autoimmune Disease Support
"a place for solutions!"
Lupus Meetup
Meet other local lupies on the 3rd Tuesday monthly
Lupus Multiplex Registry and Repository
Help Track The Wolf
Lupus Site
Our Butterfly's First Home Site
Lupus Support and Survival
An Excellent Resource
L U P U S website
St. Thomas Trust Archive
Sister Syndromes
AllThyroid.org
Thyroid Disorders And Treatments American Autoimmune Related Diseases Association
(AARDA)
Arthritis Foundation
Take Control
American Fibromyalgia Syndrome Association
(AFSA)
Arthritis Insight
"Knowledge is power...support is essential"
British Sjogren's Syndrome Association
(BSSA)
Celiac Disease Foundation
(CD/DH)
Crohn's/C olitis
Foundation

(CDFA)
Defeat Diabetes Foundation
Early Detection
Self-Management
Diabetes Mine
One of the best and most info-rich "Big-D" sites
Fibromyalgia (and CFS) Basics
(FMS/CFS)
Hughes Syndrome Foundation (APS)
(HS/APS)
International Diabetes Federation
(IDF)
IBS Tales Irritable Bowel Syndrome: Shared IBS Stories
Lupus Nephritis
Kidney Disease
National Fibromyalgia Association
(AKA National Fibromyalgia Awareness Campaign)
MSMusings
MS-Network
National Graves' Disease Fnd.
(Thyroid Disease)
PTC-info
Pseudotumor cerebriarticles, abstracts & info.
Sjogren's Syndrome Foundation
(SSF)
Raynaud's Association
"Support, Advice and Resources"
Nutrition Links
Big Fat Blog
Truth, Lies
And Obesity
Celiac.com
Gluten-Free Nutrition
Center for Food Safety
Watch What
You Eat
Food News.org
Pesticides In Produce Guide
Food Pyramids Nutrition Source
Harvard School of Public Health
Oldways
Smart, Happy, Healthy Eating
Organic Consumers
Food Safety
NATS
Nutrition Analysis Tools and System
Purple Medical Blog
Health/Food News
Good Food Logs
Cheap Cooking
Frugal Food Tips
Food Network
Meals In Minutes
Fresh Vegetables
Lean and Green
Reci-Please!
Food, Beverage
Scrapbook
Tang Monkey
FoodBloggers WebRing
Tasting Menu
Multi-Course Meals
Urban Organic
Shop Online
Support Coalition Troops/Familes
Fisher House
"comfort homes" - food/staples and healing care for injured soldiers and their families
Supporting US and Coalition Troops
Send Cards, Share Care Packages And Give More Help
SOS - UK
Support Coalition Soldiers - Help Protect Iraqi and Afghani Children
Click to Donate
Your Free Clicks Will Help Others

Animal Rescue Site
Feed Pets & Help Animals Survive
Breast Cancer Site
Help Provide Mammograms
Chid Health Site
Medical Care For Children
Clear Landmines
Clear dangerous inhabited land and help save lives.
Help End Hunger
With Dannon & Second Harvest
EcologyFund
Protect wildlife and wilderness
HungerSite
Feed Kids In Need
Literacy Site
Give Free Books To Children
Rainforest Site
Help Save Our Rainforests
Archives

Misused Medical Info Can Hurt
Please don't copy, edit or rewrite the information on this site to use without consent. LNL has received reprint consent from other sites. Facts used out of context, removed from their interacting links and material or copied inaccurately have already had negative impact on readers’ health. Please, for safety’s sake, save and share the links but leave this data where you find it or request consent and respect these simple guidelines.
Health Weblogs
A Chance to Cut is a Chance to Cure
a general surgeon
Adventures In Anesthesia
An interesting blog
Code Blog
Tales Of A Nurse
Nurses, Share
Your Stories
DB's Medical Rants
Health From Every Angle
Doc Notes
Family Medicine
Doc Shazam
A young resident's perspectives
Do No Harm
Stem Cells
Health Beat
Research Round-up
Health Care Blog
Insurance And Drug News
Interns' Diary
Two Healers With Heart
The Lingual Nerve
"The "Troupe Fantastique" - eight distinct voices from the medical field."
Medical Weblogs
News Feeds Directory
Medpundit
Hot Medical Commentary
Purple Medical Blog
News and Ideas
Q Fever!
Medical humor and medicinal parody
Random Acts Of Reality An E.M.T for the London Ambulance Service
RangelMD.com
Internal Medicine Library plus Q & A and Support Links
Science Blog
Clinical Topics
Trust Me, I'm a Doctor
An urban family doctor
AI & Lupus Logs
Bright Side of Life
Jillian's Weblog
Coping With Lupus
lupus and lupus-related illnesses
Death To Prednisone
Livejournal community
HGH Experiment Trying Human Growth Hormone to Combat FMS
IBS Tales Weblog Read personal stories and share your experiences.
Life Beyond Lupus
A Thoughtful, Articulate Lupie
Living with Diabetes
"How I attempt to live with diabetes"
The Lupus Lady
"shares her thoughts"
Thumper Thinks Out Loud: FMS One feisty writer, married to an anesthesiologist.
Wendy Usually Wanders
A Vermont
homesteader,
living lupie life
underground
your winter=my austral summer
An intelligent, interesting read
Health News
AMEDEO
Free weekly newsletters / new medical articles
American Medical News
The Physicians' Newspaper
BBC Health
Public Health
News Source
B.M.J.
The British Medical Journal. News and customized email alerts in lupus research and more.
The Free Medical Journals Site
Free access to medical journals.
Golden Links 4 Doctors
The Best Medical Websites, voted by the Amedeo Community.
Health On the Net
(HON) News HealthDay Archive
JAMA Highlights
Current News And Article Archives
NYT Health
Registration Required
Reuters Health News
Breaking News
UPI (Medical)Investigations
Holistic Health
Alternative Medicine Homepage
Health Sciences Library System
American Association of Integrative Medicine (AAIM))
Integrative and Western Medicine
American Holistic Health Association
(AHHA)Partnering to Create Wellness
(NCCAM)
National Center for Complementary and Alternative Medicine
Center for Integrative Medicine (CFIM))
Univ. of Maryland School of Medicine
(CAM) Sites
Complementary and Alternative Medicine
Doctor Yourself
Dr. Andrew Saul
HealthWeb
Integrative Medical Arts Group, Inc.
Holistic Online
Information Clearinghouse
Integrative Medicine Alliance
Bringing together healing traditions
Omega Institute for Holistic Studies
workshops and
retreats since '77
Whole HealthMD
Alternative, Complementary and Integrative Medicine
Mental Health
Borderline Personality Disorder Resource Center
(BPD)
How To Choose
A Competent
Counselor

Psychology Today
Self Tests And
Find a Therapist
Samaritans
24 hours/7 days confidential emotional support
Health Watch
100 Top Hospitals
Protect Yourself
BeMedWise
Use OTCs Wisely
COPD Center
Test Your Lung Function
The U.S. FDA
Recalls, Withdraws and Safety Alerts
Diabetes Monitor
Huge Resource
Drug Digest
Drugs, Herbs, Supplements Information Site
HealthGrades
Health Care Quality Reports
Healthy Skepticism
Countering misleading drug promotion
InformedHealth Online
Research Facts "Informative, Objective and Evidence-Based"
Internet Medical Journal
Medical Info
Medicine Bridge
Free And Discounted Prescriptions
MedLinePlus
Health News, Drug Info
No Free Lunch
Drug Hustles And Hi-Jinks
Pharma Watch
Punctures drug promotion
Public Citizen
Examine Your Doctor
Randall Chronic Pain Scale
Helps Doctors Understand
Rx Assist
Free And/Or Cheaper Meds
SafeMedication
Look Up Your Medications
WorstPills.org
Read Before Swallowing
Consumer WatchDogs
BodyBurden
Pollution In People
Children's Health Environmental Coalition
For Kid's Sake
Congress Watch
Make Your
Vote Count
Consumer Lab
Tests Health Products
Health Care Without Harm
Protecting
Patients
Trust for America's Health
Protecting The Public

Good Works
EarthDay Network
Help Preserve
The Planet
Green Ribbon Pledge
Conserve Energy
Habitat for Humanity International
Help Build Homes
IraqiSchools.com
Help Protect Iraqi Children's Future
Malaria No More
Malaria kills over 1,000,000 children every year. $10. bednets save lives
Medic Alert
Wear or Give Emergency Medical History Emblems
Mercy Corps
Help kids and others in need
Natural Resources Defense Council
Donate And Help Save The Planet
Network for Good
your town needs you right now
Operation Give
Supply Toys and Special Needs for Iraqi Children
Spirit of America
Help Americans serving in Iraq and Afghanistan aid people in need.
Lupus NewsLog's Code Warriors
LNL thanks Sheila Wilder for original weblog template design. Visit TV Is My Drug of Choice.
to read about this smart, salty, wry and witty blogger. Sheila's a keeper.

LNL thanks Jared Taber for expert weblog template modifications and site expansion. Custom computer systems and network solutions since 1997. Producing anime music videos for Outlawed Sleep Productions. Semi-finalist, comedy category, Anime Expo 2003. Email Jared Taber.
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Julie's Journey
(Julie is webmaster of The Lupie Bin, a worthy web information resource and a compassionate haven. She is a dedicated person and a precious gem in the chain that links us all together.)


LUPUS. What a long, strange trip it's been! The first time I heard the word Lupus was in 1987. I was 22 years old and taking three allergy shots twice a week in an effort to get control of my asthma-causing allergies. One day I just happened to mention to my allergist the amount of pain I was suffering. I've had pain since I was a child and just assumed it was 'normal'. But, this day, it caught the attention of my allergist and he suggested running a panel of lab tests.

At my follow-up appointment, I was stunned to learn that some of the testing had come back "positive", in particular the ANA (antinuclear antibody). The doctor said to me "I think you may have Lupus." Well, that just about floored me! The only person I had ever known with Lupus, a schoolmate's mother, had died young and suddenly!

This revelation started me on a path looking for the "right" doctor with the "right" answers and the "magic cure". Consequent tests all proved "negative" and the diagnosis was different with each doctor. I've heard everything from MS to fibromyalgia to depression to brain tumor!

Upon introduction to my local Lupus support group, I learned I was not alone in my symptoms. Here there were actually people who felt just like me - young and old. My current physician was a speaker at that first meeting. When I mentioned my symptoms to her, she was not at all surprised. It would still be several years of bouncing around from doctor to doctor before tests, symptoms and criteria confirmed Lupus.

Looking back to my adolescence, it is obvious now that Lupus may very well have been lurking in the shadows. The sudden and dramatic weight loss in high school after prolonged exposure to the sun. The days in bed, too weak to function, but not really "sick". The intense and unexplainable raised sunburn - I'd always been a tan sunbather before. And then there was always the rash on my face, looking more like "too much sun" rather than a "rash".

As the illness progressed, my social life plummeted. I felt that nobody would want to saddle themselves with a sick partner. I also found that people I thought were my friends quickly vanished when the going got tough. Boy, you sure find out fast who your true friends are in the face of illness!

Any idea of career aspirations suffered, too. Too sick to work full-time any longer in 1992, I started working part-time at the local hospital in data processing/reimbursement. September 1998 saw the end of my working life when I had to resort to disability in order to preserve what "energy" I had left.

Lupus has affected my central nervous system, making it difficult to function "normally" most days. Memory loss, headaches, irrational behavior, visual disturbances, increased intracranial pressure, neuropathy, and confusion are just a few of the symptoms I experience, along with the usual fatigue and pain of Lupus. Not to mention the effect the medications have - that's a whole other ball of wax! Nonetheless, I have hope for a cure in the future and, for myself, a return to better days.

The Lupie Bin was born February 2001 in an effort to help other lupies find the real lowdown on lupus and to get the sense that they are not alone. So many of the people, primarily women, that I get letters from tell me that they felt so alone in their disease until they happened upon The Lupie Bin.

Not only do these lupies feel alone, but are so hurt and disturbed by their friends and family members who do not understand lupus and label them "crazy"! They so often express to me their relief in knowing that they are not crazy and that they feel they have something tangible to show their loved ones, to help them to understand. This has been an amazing gift - one I could never have anticipated when first starting The Lupie Bin.

September 2003 saw the addition of The Lupie Bin's MSN Group. This group was started after I received numerous letters from fellow lupies searching for pen-pals. Some wrote looking for a forum to connect with other folks living with lupus.

The membership is growing daily and the members are amazing. They support and understand each other, and in doing so give and receive strength. I am humbled to be able to provide a place where lupies can come together and share, teach, learn and connect! The Lupie Bin's MSN group is a moderated message board forum for individuals diagnosed with Lupus and is directly linked to The Lupie Bin website.

Living with lupus can feel like an isolated journey. Not everyone has unconditional support from friends and family. Here you will find understanding, comfort and friendship with fellow lupus survivors. Join us; learn and share with lupie "veterans" and "newbies" alike. To quote one of our amazing members "...What you are really doing is singing in a choir. Because although we may have symptoms at different times, we are all on the same song."

I do not spend as much time on The Lupie Bin as I would like, as it is a never-ending battle to keep the wolf at bay. But I dedicate what time I can (and what my brain and body allow) to keeping the site up-to-date and running smoothly. I appreciate so much the kind words from friends and fellow lupies who like the site and find it to be a source of information and help. After all, that is the foundation of The Lupie Bin - to inform, assist, and lend support.

©2004 Julie Silva
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©Shar Phoenix, Lupus NewsLog. Article reprints are available upon request. Contributing writers retain their own copyrights. All Lupus NewsLog sites and pages offer research based information to assist in understanding lupus and in self-advocacy. Content here, on sister sites or in email response is not a substitute for medical advice or treatment. Consult a qualified physician for medical attention.