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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
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Our Large LNL
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Lupus NewsLog's Articles
Our Right to Pain Relief
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Pain Care Bill of Rights
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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
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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
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"a place for solutions!"
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Meet other local lupies on the 3rd Tuesday monthly
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Our Butterfly's First Home Site
Lupus Support and Survival
An Excellent Resource
L U P U S website
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Thyroid Disorders And Treatments American Autoimmune Related Diseases Association
(AARDA)
Arthritis Foundation
Take Control
American Fibromyalgia Syndrome Association
(AFSA)
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"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
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One of the best and most info-rich "Big-D" sites
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(FMS/CFS)
Hughes Syndrome Foundation (APS)
(HS/APS)
International Diabetes Federation
(IDF)
IBS Tales Irritable Bowel Syndrome: Shared IBS Stories
Lupus Nephritis
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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
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Smart, Happy, Healthy Eating
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NATS
Nutrition Analysis Tools and System
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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
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A young resident's perspectives
Do No Harm
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"The "Troupe Fantastique" - eight distinct voices from the medical field."
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Medical humor and medicinal parody
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RangelMD.com
Internal Medicine Library plus Q & A and Support Links
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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
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Registration Required
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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
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HealthWeb
Integrative Medical Arts Group, Inc.
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Information Clearinghouse
Integrative Medicine Alliance
Bringing together healing traditions
Omega Institute for Holistic Studies
workshops and
retreats since '77
Whole HealthMD
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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
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Pharma Watch
Punctures drug promotion
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Helps Doctors Understand
Rx Assist
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Look Up Your Medications
WorstPills.org
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Consumer WatchDogs
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Congress Watch
Make Your
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Consumer Lab
Tests Health Products
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Patients
Trust for America's Health
Protecting The Public

Good Works
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IraqiSchools.com
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Malaria kills over 1,000,000 children every year. $10. bednets save lives
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your town needs you right now
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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.
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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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John - Rewriting the Story of The Big Bad Wolf
Many folks who work with us do not have lupus but they're as dedicated to easing pain, raising awareness and finding a cure as those who do. John O'Connor is the editor/publisher of one of the most respected lupus newsletters in our global community and a great ally.


I edit and publish The Lupus Sundial, a quarterly newsletter of the Marcy Zitron Chapter (LFA) in Central Ohio. My friend Shar has been asking me for a few weeks to write something about myself for her lupus 'blog', so I'm finally getting around to it. I took up the editing job on the newsletter in late 2002, after browsing an internet 'volunteer' site and finding the request for an editor.

I had proof-read and printed a bi-weekly bulletin for a local Kiwanis club a few years back, and still had the 'itch' to do informal publishing. My dad was a printer and proof reader for a couple of Indianapolis newspapers for over 40 years, so whether I was conscious of it or not, I had a lot of exposure to the craft from way back.

One of the most rewarding things about doing the newsletter is the support and encouragement I get from the officers of the chapter. From the first, President Dolly Harmon and Treasurer Deb Hutchison told me to use my own instincts regarding content, as long as I could keep the information readable for the lay person.

That's not always possible, given the rather technical/medical terms that accompany lupus, or any disease, but there are still lots of ways to keep some of the 'med-speak' to a minimum. There's always a good 'human interest' story out there, which is what I try to include in every issue of the newsletter.

I don't suffer from lupus personally, so I can't impress anyone with how I manage to work a full-time (3rd shift) job as a computer techie, help raise a couple of teenagers, and squeeze in a newsletter four times a year. My son Matt is about ready to graduate from Ball State with degrees in Sports Management and Wellness Management. My other 2 kids are Steve, 18 years old and Emily , who is 15.

As I mentioned, the opportunity to do the newsletter made itself available at just the right time for me, and I get a lot of enjoyment from the different tasks that go into putting it together. As maligned as the internet may be, it is the main source of my articles, and I'm very glad to have the variety to choose from. I've found that authors of all sorts of lupus-related articles are more than happy to allow me to reprint their work for our local audience.

Finding the articles, contacting the authors, getting approval to reprint, and filling out the newsletter with my own personal touch (a 'today-in-history' two-month calendar and a 'home-grown' crossword puzzle) takes up most of the time in between publication dates. There's ususally a few very specific announcements to include with each issue, so I try to give the chapter officers plenty of time to get me that kind of info each quarter.

In just the first year of doing the newsletter, I've gotten to correspond with book authors, dedicated doctors and medical researchers from numerous universities around the United States, and even a Hollywood celebrity! Another wonderful 'lupie' acquaintance of mine is Shar Phoenix, a very talented writer who has her own touch of 'glitz-n-glam' and an amazing way with words. Finding her musings on lupus in various spots on the internet has been a real treat, and I'm hoping to make abundant use of her talents in the future by 'borrowing' articles and stories by her and other 'blog' submitters.

One of the nice things about the physical creation of the Sundial is the help that is provided by a dedicated class of middle-school kids in my town (on the north side of Columbus). After getting my final copy to the printer, the unbound editions are then delivered to the class for 'assembly' and addressing. Once that is done, which is no small feat, one of the teachers gets the 400-plus newsletters to the post office for bulk mailing.

I don't know how many of you may have had a 'bulk mail' experience, but I tried it once on my own last summer, and I don't plan to repeat the process again in this lifetime! The thing that most sticks in my mind was trying to get labels on the plastic and cardboard tubs while standing on the floor of a post office loading area. The day I took the newsletters in for final sorting and mailing, we had a tornado or two in the area, and all the bay doors on the loading dock were shut tight, thus providing me with a constant 9o-plus degree work environment.

After an hour or so of this experience, I left my latest editions with a courteous (disinterested?) postal 'liaison', hoping they would be on their way to chapter members by that night. Of course the next morning I was called by another 'liaison' and informed that my tubs were over-stuffed, and I would have to break my shipment down into more manageable packets. I finally ended up coercing my wife and kids into the family 'project' of addressing and stuffing envelopes with the newsletters, in the end paying close to one dollar per issue to mail them first class! Needless to say, I have nothing but pure respect for the dedicated middle-school class and their teachers for handling this task each quarter (at much less than $1.00 per copy!)

One of my goals as the newsletter editor is to get to know some of the other chapter newsletter folks around the country (whether LFA-associated or not.) I haven't had the time to really approach anyone directly, but many of the newsletters from different regions are sent to our local office, and we reciprocate by sending at least one copy to most of the current chapters of LFA.

As time goes on, I hope to be able to share some ideas with other editors, in order to help us all come up with the most informative newsletters that we can. Unfortunately, it looks like I'll have a job in the lupus information biz for the forseeable future. It's my hope that the continuation of efforts like mine and other info 'disseminator's will somehow be part of the equation that eventually provides a lupus cure.

©2004 John O'Connor



©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.