About Lupus NewsLog Library
Dear friends and readers,
Here in Lupus NewsLog's Library, you can find links to sites that may educate you, amuse you, challenge you and give you hope. The more we learn, the more we can grow as individuals and the more we have within us to share with others. And, from all we here at Lupus NewsLog have learned so far, nothing is more stimulating and satisfying than sharing. What benefits one, can benefit others just as well.
So, if you have or know of a site you'd like to share, one that is educating, amusing, elevating and encouraging, please send us your link and a brief write-up to share here in our library. We're also glad to exchange site banners. Just email Shar
your lupie scribe.
Autoimmune (AI) & Lupus Log Links
An Attitude Of Gratitude
Arthritis Blog Archives About.com The Bright Side of Life
"Enjoy uplifting stories, positive thoughts and inspiring Web sites." etiology
"This is a blog about the diseases that impact my life and the issues related to them......" Hermes
(See Archive, 12/15/03, “Flexibility is Freedom” on Osteoarthritis) Information Directory lupus is a fool
"DIY Medical Knowledge... aims to make it easier for people to find the medical information they are looking for, by covering a range of DIY medical and health topics." IBS Tales Weblog
“Read the personal stories of IBS sufferers and share your own experiences.”klbrowser blog
(Living with fibromyalgia, Sjogren's and a good sense of humor) Kirsten's Health Blog
“focusing on the positive side of being young with Inflammatory Arthritis” the porphyria blog
"This is a syndrome that develops when toxic chemicals or heavy metals interfere with the enzymes that metabolize the intermediates in the production of heme which makes hemoglobin for our red blood cells." Science Blog: Arteries Clog Earlier in People With Lupus, Says New Study Science Blog: Staph study could help with treatment for lupus Science Blog: Transplant researchers stumble on possible treatment for lupus, blood cancers TV Is My Drug of Choice
(Cedar Fever, Heart Disease, RA, humor and more. Sheila also contributed invaluable site aid to Lupus NewsLog.) What's Gnu? Lupus Awareness Initiative
"A blog of news, resources, and events of use to reference librarians."
The Creepy Turtle Pages
"I was diagnosed with lupus in college."
"lupus...aspergers...nursing...other distractions in life..."
diary of a lupie
“i am not a hypochondriac. it is not my imagination. it is my pain, my struggle and my life.”
Etherian's Island Lupus Archive
(Jayne’s journey, living with Epstein-Barr, Fibromyalgia, CFS and – perhaps? – SLE)
The Lupus Lady shares her thoughts
"lupus, fibromyalgia, osteoarthritis, raynauds and sjogrens... The past 7 years I have seen tremendous challenges, but you can't see the true beauty of life without climbing the mountain."
Life With Lupus
"This is the up to the moment story of living with systemic lupus from the point of view of the person who wakes up with it, spends the day with it, and then must sleep through another night with it."
L is for Lupus
"I'm no doctor, I'm just a patient: wherein I muse and grumble about my experiences with Lupus."
"When I'm home, that's an underground house way back in the woods of Vermont. I have an organic vegetable farm and am a homesteader...I've been told I have Crohn's, lupus, MG, etc…."
AI and Lupus Logs at Live Journal - Post Questions or Comments
"swop ideas on pain management, treatment or somewhere to chat when you cant sleep because of it. This is an open community, so whether you are someone who has one of the many (about 170) forms of arthritis or are a relative of an arthritis sufferer feel free to join."Autoimmune Disease Community
"This is the community for people who have autoimmune diseases, know someone who does, or just want to learn more about autoimmunity in general. Here you can share your story, ask questions, seek support, gripe and complain about your disease and/or treatment, or find hope and inspiration for recovery." Chronic Health Issues
"A shared community for sufferers of any and all sorts of chronic health issues, mental, emotional, and physical. These can be anything from Irritable Bowel Syndrome to Diabetes, Leukemia to Panic Attacks, Allergies to Cancer."Coping With Lupus
(and lupus-related illnesses)"Please feel free to join, to post and to add your comments and thoughts about Lupus and lupus related questions - regardless of whether you have Lupus or not. Also people who wish to post about related illness such as antiphospholipid antibody syndrome or becet's disease are welcome"Creaky Joints
"a community for people of all ages with arthritis or other chronic illnesses that could be termed "creaky" who want to live their lives despite their condition. A place where having a little chronic pain (or even a lot of chronic pain) is OK, because there are others within earshot who understand."Death To Prednisone
"This is a support community where you can bitch and complain about prednisone. Yes this little miracle pill allows alot of us to function it can frustrate us. So, please feel free to vent ALL frustrations you have about prednisone. Good or bad. If you take this medication or have in the past please feel free to join and share any information you feel may do some good. VENT VENT..."Adventures in Disability Benefits, Gov't & Private
"I will write something brilliant here when I recover from my latest bout of wrestling with the system." (shar says - offers info and links plus discussion on comparison between US and Canadian benefits) your winter= my austral summer
" Meaghan writes on Lupus unto the 2nd generation. Be sure to read Tuesday, April 20th, 2004. An intelligent, thoughtful post and an interesting journal. Raynaud's Syndrome's Journal
"This is a community journal designed for people who have/want to know about Raynaud's. mnfiddledragon is the moderator/maintainer of this community - as of now, this journal is open to everyone. Please be respectful - no trolls, no flames, or she will make it restricted."
Health/Medical Blog Links
Behavior and Health Blog
at Johns Hopkins Public Health
Big Fat Blog
"... links to and gives opinions on articles dealing with fat, as a general rule. There are hundreds of articles out there that perpetuate the "fat = bad" myth and Big Fat Blog really tries to offer up a fat-positive opinion."
"biologging is a community website for biomedical researchers, which allows you to create your own annotated store of abstracts, and to browse the logs of other users."
"Public health, law, policy, etc. from a public health law and policy researcher." (a must read)
BLOGWISE - Keyword: health
Blog Directory and Weblog Research (an assortment of health related links)
“There Ain't No Such Thing As A Carbohydrate-Free Lunch”
CodeBlog: Tales of a Nurse
“… specifically for personal medical stories…Almost everyone that comes into contact with someone in some sort of medical situation has at least one good story, be it an RN, MD, LPN, nurse’s aide, unit clerk, unit support, manager, or volunteer." (patients, too)
DB's Medical Rants
“An academic general internist comments on medical issues and the current state of medicine. I reserve the right to be blatantly opinionated; you should take the right to criticize me!!” (another must-read)
"Mr. Hassle's Long Underpants and Other Stories, by Doc Shazam. A young resident's perspectives about learning medicine, taking care of patients and being overworked."
Family Medicine Notes - Docnotes
"... Occasional Notes from a family physician - since 1999"
"… I’m a first-year medical student at Stanford Med School... learning how to be a doctor.
"Ramblings of an Emergency Physician in Texas"
The Health Care Blog
"Musings about the goings-on in American health care. Areas of concentration include health plans, policy, IT and eHealth, physicians, pharmaceuticals…"
"Reflections on the study of medicine... I am a... final year student studying medicine at Melbourne University in Australia."
HubMed: pubmed rewired
"An alternative interface to the PubMed medical literature database"
Kill as few patients as possible
"I'm a family doctor in semi-rural east Texas. First, though, I'm a husband, a dad, and a Catholic Christian."
"Commentary on medical news by a practicing physician."
"We are your source for medicine and psychiatry news."
MPN Medical Blogs List
"Web sites that are medical blogs and weblogs."
"A bioinformatics weblog"
Medical Weblog "A Dutch medical intern logs about healthcare related issues."
Purple Medical Blog
"Medical News and Information Understandable " (mighty interesting weblog)
"a psychology blog with new links for health and psychology"
"A physician practicing as a hospitalist in TX."
"Take part in the tradition of science discoveries." (lupus research info here)
Tucker Library News
from the renowned rheumatology resource, National Jewish Medical and Research Center
veiled4allah: Islamic medical poetry
"The occasional thoughts of a Muslim woman. Islam, current events, my life, and whatever else interests me."
"My source of greatest satisfaction has been my involvement with implementing new systems and technology... I've particulary enjoyed the experiences I've had with surgical patients over the past two years."
Children’s AI/Lupus Health and Support Sites
"Message Boards/Directory of Healthcare Resources/The Most Recent and Accurate Medical Information/Interactive Games and Contests/ MSN TVs to seriously ill children with emphasis on those from low-income families. This enables these children to establish e-mail communication with teachers and links the child to school work so they can maintain their studies. Brave Kids Resource Centers." Compassionate Friends
is a loving support group of and for parents who are grieving after the death of a child of any age. Coping.org
"Tools for Parents of Children with Special Needs" (and plenty of resource links)CROHNS 4 KIDS
"useful advice... contact other people that suffer from Crohn's, as well as helping others to understand the disease." CROHNS 4 KIDS Crohn's Disease Links List FLRA
Lupus, Fibromyalgia and Rheumatoid Arthritis in our Youth "This group has been created as a place for the younger generation (ages 6+) to gather to find support while living with and dealing with lupus, fibromyalgia, Rheumatoid Arthritis and others. Please join us!!" JRD Website
Juvenile Rheumatic Disease Online Support Group. "for those interested in joining our free online support group... read personal stories…" Kids Get Scleroderma Too!
"The Juvenile Scleroderma Network ... the only national voluntary organization that works for all children affected by juvenile scleroderma and their families." KidsHealth
"is the largest and most visited site on the Web providing doctor-approved health information about children from before birth through adolescence." Pediatric Lupus Board
At Lupus Around the World. "... a place for discussion of the special issues that children with lupus have..." Lupus "and other autoimmune disorders."Pediatric Lupus ICQ Interest Group
(Chat) "... some of our parents have scheduled a regular chat time on Thursday evenings, at 5:30pm Pacific Time."Teens With Crohn's Disease
"On this page, I will post experiences we teens have had with the disease. Any advice you may wish to pass on to others is also welcome. Since most all of us follow special diets, there is a recipe section." The Wolf in Kid’s Clothing
"My daughter was diagnosed with lupus at age 12. The information contained on this site is information I have learned during my quest to return some normalcy to our family life."
Camps for Challenged Children
Barretstown Gang Camp
in Ireland, serving Ireland, Britain and Europe. "psychosocial support for children diagnosed with cancer and other serious illnesses through an innovative residential camping programme of Therapeutic Recreation. We also provide specialised programmes supporting the families of these children."
The Boggy Creek Gang Camp
"gives campers a chance to normalize their lives by being with children battling the same illness. "Everyone is just the same as me!"...programs include week long summer sessions as well as family weekends in the fall and spring."
is "the only program in the nation whose mission is to address the impact of a life threatening illness on every member of the immediate family—the ill child, the parents, and the siblings...a haven for over 16,000 individuals from diverse cultural backgrounds... week-long camps. Free quality services... including accommodations and meals, onsite medical services, counseling services, and recreational facilities."
Give Kids the World
” Give Kids The World Village is a non-profit resort that creates magical memories for children with life-threatening illnesses and their families. Wish-granting organizations coordinate transportation to Orlando, while Give Kids The World provides accommodations at its whimsical resort, attractions tickets and meals for a week-long fantasy vacation. Since its founding in 1986, Give Kids The World has welcomed families from all 50 states and 50 countries.”
Hole in the Wall Camps
"are the world's only network of camps for children with life threatening illnesses. To date, over 70,000 seriously ill children from 34 states and 27 countries have attended free of charge. We are a not-for profit organization totally supported by charitable contributions. Hole in the Wall Camps are the dream of actor Paul Newman who started the first camp in 1988 and has been the driving force ever since."
"pour les enfants européens...this center welcomes critically ill children aged from 7 to 17 for stays of 12 days. Children come from France and other European countries."
The Painted Turtle
"Here is a place to give encouragement and comfort to one another, sharing laughter and joy through every step, experiencing new and exciting things, challenging yourself beyond what you think is possible and supporting new friends in experiencing this same joyfulness."
Lupie Web Weavers – Personal Sites and Groups
Debby, who has Lupus and Celiac Sprue, is never free from pain, not only because of these diseases but for the love of her son Carl, who died young. Debby’s giving nature and strong spiritual beliefs keep her focused with a view that extends beyong her challenges, to what she can do about them. As she has said, “making others feel better makes me feel better.” She is a
member and has lovingly created webpages to honor Carl. On these pages, Carl and his feline friend Measy are vibrant with life because Debby makes sure they are never forgotten.
Angela’s website covers a lot of territory besides Living with Lupus and FMS
because she’s survived traumatic experiences, including child abuse and alcoholism. Angela has achieved 10 years of sobriety and her husband Phil is coming on strong with 15 years. Phil’s website, Price Of My Soul
is linked to Angela’s, both sharing a commitment to recovery through honesty.
Didi set up the five groups below, to help others who face the same issues she deals with everyday. Thank you, Didi, for your contribution.Autism Support
"We are here to support each other, discussion are open for all."Life with Lupus
"… find the support you need, to get day by day, that special word off encouragement, or just an answer to a question… this group is for all of you lupies... refuge and comfort."LIVING IN PAIN
"We know what you are going thru, we are going thru the same, it does not matter the cause of the pain... pain is pain, and hard to deal with... You will be sharing with people who like you know the pain is real..."Mommies with Lupus
"Welcome… please tell us about your self and your lupus ups and downs, your family… message board… morning, afternoon and evenings chats…"mommies with lupus and children with learning delays
"We are all here because we have Lupus. We can talk and vent some air. laugh and cry, share experience, and maybe suggestion. Just a community that cares."
Lupus Community Health/Medical and Support Sites
Alliance for Lupus Research
"Our mission is to prevent, treat and cure lupus through medical research. 100% of all donations go to support medical research."ALT.SUPPORT.LUPUS
North East Lupus Group site Lupus UK (an excellent information resource)ALUA Asociación Lupus Argentina
"Revista de ALUA basada en notas cientificas de especialistas de nuestro país y de Asociaciones de Lupus de distintas partes del Mundo."Arthritis Foundation
“is the only national not-for-profit organization that supports the more than 100 types of arthritis and related conditions with advocacy, programs, services and research.”American Autoimmune Related Diseases Association
“AARDA is the only national organization dedicated to addressing the problem of autoimmunity, the major cause of chronic illness.”American College of Rheumatology
“is an organization of physicians, health professionals, and scientists that advances rheumatology through programs of education, research, and advocacy that foster excellence in the care of people with arthritis and rheumatic and musculoskeletal diseases.”American Pain Foundation
"Our mission is to improve the quality of life for people with pain by raising public awareness, providing practical information, promoting research, and advocating to remove barriers and increase access to effective pain management." (Pain Info Center, Pain Action Guide and Pain Care Bill of Rights)American Fibromyalgia Syndrome Association
"is the only charitable organization whose primary mission is to seed research in FMS and CFS. We acknowledge that patient and physician education, public awareness and advocacy are all important ingredients in aiding the lives of people with FMS and CFS."British Sjogren's Syndrome Association
"is a self-help group for people with SS. It aims to spread information about the disease and how to alleviate its symptoms. The quarterly Newsletter provides a regular up-dating of information on current research and a forum for the exchange of views on how best to cope with the problems of living with Sjogren's Syndrome."Celiac.com
“The Celiac Disease and Gluten-free Diet Support Page provides important resources and information for people on gluten-free diets due to celiac disease, gluten intolerance, dermatitis herpetiformis, wheat allergy, or other health reasons. Celiac.com offers key gluten and wheat-free on-line resources that are helpful to anyone with special dietary needs.”Celiac Disease Foundation
"CDF provides support, information and assistance to people affected by Celiac Disease/Dermatitis Herpetiformis (CD/DH. CDF increases awareness among the general public. CDF works closely with health care professionals, pharmaceutical and medical industries. This cooperative effort puts CDF at the forefront of CD/DH care and research, helping us to aid and benefit those affected."Cyndee Miller's Lupus Home Page
(This site has many worthwhile links and Cyndee's own story of living with lupus for 38 years. Like me, she's been wrassling with Ol Wolfie long enough to pin him down now and then and learn a few of his tricks. This site, her story and her efforts on our behalf deserve your attention)Disinissues
"The purpose of Disinissues is to share information and advice about the processes of applying for, appealing, and renewing Social Security Disability Insurance (SSDI), Supplemental Security Income (SSI), and private long-term disability insurance." (Yahoo Group)Dr. Nelson's Osteoarthritis Page
"I believe that the key part of treating osteoarthritis is patient education, which is why I created this website and wrote this paper. Once the patient understands what is going on, they can take charge of managing their condition. Osteoarthritis cannot be made to go away; getting younger is the only thing that will do that (we are working on it!). Osteoarthritis is not "cured", but managed. Patient involvement in that management is key."DrWeil.com
(Information on food as medicine, the use of herbs, supplements, discussion forums and a personalized line of nutritional products)DrWeil.com’s lupus Q & A archive
(a must-read, with valuable information on our nutritional do’s and don’ts. Also provides links to lupus related syndromes and their needs)European Lupus Erythematosus Federation
"The members of ELEF are the national organisations of Lupus Groups in Europe. At this moment there are 15 countries with 16 organisations and about 16.500 patients represented:"Faces of Lupus
"… shows the many faces of this unpredictable illness. Lupus receives far less attention and funding than other illnesses yet more people have lupus than AIDS, cerebral palsy, multiple sclerosis, sickle cell anemia, and cystic fibrosis combined. There are currently 255 faces on the site and anyone with lupus is welcome to add their face. (You don't need a scanner or digital camera!)" (see yourself in others’ faces, add your own and show the world that the true face of lupus is humanity)Fibrohugs
"Fibromyalgia Related Illnesses such as MS & Lupus... the largest interactive Fibromyalgia site that is truly designed for the entire Family… Monitored Chats & Forums, Member Submissions, Research Results, Tons of Information, and the sincere unconditional love and support we offer each person that visits this site."FIBROMYALGIA (and CFS) BASICS
The Fibromyalgia Network "Fibromyalgia Network is not only the name of a newsletter publication on FMS, but it also stands for a small group of patient advocates who maintain this Web site and answer a toll-free phone number for people living within North America." (newsletters, Specialty Packets, MD referrals, online store)Get Into The Loop
with The Lupus Research Institute (LRI) and its National Coalition of state and local patient organizations. Actor James Garner, whose daughter has lupus, is the spokesman.Global MedNet
"The largest worldwide hospital and health care provider directory on the Internet. Search your hospital online by name, country, state and location... comprehensive list of physicians, dentists, and other health care professionals on the World Wide Web. Locate your doctor in Cyberspace, online databases.."HealingWell.com - Lupus Library
(information, resources and numerous articles on lupus and related medical conditions. A reliable and extensive base for study)Hospital for Special Surgery
"Information on rheumatoid arthritis, osteoarthritis, lupus, osteoporosis, and other rheumatic diseases from a world academic leader in patient care and research in musculoskeletal medicine"Hughes Syndrome Foundation
"Just 20 years ago, in 1983 Dr Graham Hughes and his team in London described in detail a condition now known as Hughes Syndrome and often known as ‘sticky blood’, in which there was a danger of thrombosis. The Hughes Syndrome Foundation was set up to help promote awareness of this condition and to help fund medical research into what is now known to be a major and common medical condition… to provide information and support for patients, and it is also working to make the medical profession more conscious of ‘sticky blood’ – how to diagnose and treat it. Please find attached two patient case histories."IBS Tales
Irritable Bowel Syndrome: Articles and Information. A very resourceful site.Lupus in Black Women
at ALL ABOUT BLACK HEALTH “… As many as 1 in 250 young black women will get the disease… a website that keeps you informed on health related issues as they affect Blacks and minorities at risk, for the betterment of their lives.”Lupus: A Patient Care Guide for Nurses and Other Health Professionals
(this is an absolutely excellent series, with important information for those with lupus, their families, caregivers and medical support professionals. From the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) an American government agency.)The Lupie Bin
(a true labor of love by Julie, a very dedicated and dear lupie. Visiting this site is like dropping in on an old friend and catching up on family news. Among TLB’s many and varied pages, you’ll find the "What’s New With Lupus" pages, a page in Spanish, with links and loads of lupie stories to read.)The Lupie Bin Message Board
at MSN groups is also Julie's inspiration. This is a members only group to protect the privacy of posters and requires registration.Lupus Canada
"Lupus Canada, as a national voluntary organization, in partnership with its members, promotes research to find the causes and a cure for lupus; advocates on behalf of the lupus community; facilitates and coordinates education and public awareness; and supports organizational growth and development."Lupus Chronicle
(a remarkably well done lupie owned and run publication, featuring articles by lupie authors, personal lupie stories, lupie spouse’s stories, Laugh Lines and Life Lines, along with current lupus news. TLC is smart, funny, innovative and educational, all at once. I was once the featured writer at TLC, and I’m pretty darn picky - Linda and her loyal lupie crew put out a true gem.)Lupus Clinical Trials
(find out what trials are going on and coming up)Lupus Foundation of America, Inc.
(LFA) (the eminent national and international pioneer in support of lupies and lupus research. Most activists here are volunteers, committed to lupus awareness. LFA offers support, research, articles, links, newsletters and Lupus Now magazine)Lupus Foundation of America Online Support Groups List
pageLupus Foundation of America Chapter Locator
(find a chapter in your community, with the U.S.)LFA's List of International Lupus Groups
(find a lupus group in your country)Lupus Meetup
International Lupus Meetup Day. "People affected by lupus worldwide and friends... Meetup ... for support, info and conversation. Meet locally the 3rd Tuesday of every month."Lupus Multiplex Registry and Repository
(collecting family information for genetic studies, in an effort to decode lupus DNA. They’re seeking American families with two or more members who’ve been diagnosed with lupus. The LMRR hopes we’ll all participate and they’re especially looking for families with African American and Native American ancestry. This very important Oklahoma Medical Research Foundation study is sponsored by the National Institute of Health, Musculoskeletal and Skin Diseases)Lupus Nephritis
National Kidney and Urologic Diseases Information Clearinghouse "provides information about diseases of the kidneys and urologic system to people with kidney and urologic disorders and to their families, health care professionals, and the public."LupusOhio
(this active and interactive site offers a large Lupus Information Library, forums and The Lupus Sundial, an interesting, educational newsletter and a fine reading resource. No matter where you live, this site, its newsletter and many other services will benefit you)The Lupus Site
(A popular internet hub of medically based information and support. The original home of Butterfly News, which became Butterfly NewsBytes. TLS has a variety of message boards, current research and so much more to offer. Previously known as Joanne's’ Lupus Site)The L U P U S web site
LUpus Patients Understanding & Support (Roz has organized encyclopedic documentation, with most contributed by doctors and professors. Because of this site’s long standing support for the St. Thomas Hospital Lupus Unit, much of their research is published here. Message boards include Diagnosis, Symptoms, Medication and Therapy, Emotional/Psychological and a Teens with Lupus board)Lupus Trust of New Zealand
"We are committed to understanding and supporting people with Lupus and related autoimmune diseases."Lupus UK
"LUPUS UK is the only national registered charity supporting people with systemic lupus and discoid lupus and assisting those approaching diagnosis. We presently have over 7,500 Members and 30 Regional Groups who arrange medical talks, publish local newsletters, set up local occasions and organise fundraising events. LUPUS UK also produces an informative national magazine with lupus articles, letters, reports, and photographs, and operates a strong Grant Programme for research purposes and welfare."LWLupus
Yahoo Group. This is the original widely popular Living With lupus e-group, smaller and cozier at its new site.MedicineNet Systemic Lupus Main Index
"The MedicineNet doctors have carefully compiled the related articles…" (links to medical information on symptoms, tests, diagnosis, medications, pregnancy, healthy lifestyle, related syndromes and much more)MS MuSings
online magazine "By and For Those with MS, Multiple Sclerosis" and one of the World's
Top MS websites.National Fibromyalgia Association
(in-depth info, support, a store and more)National Network of Libraries of Medicine
"Consumer Health Information... Multilingual Consumer Health Information"Raynaud’s Association
"Support, Advice and Resources"Sjögren's Syndrome Foundation
"… practical information and coping strategies that minimize the effects of Sjögren's syndrome... the clearinghouse for medical information and is the recognized national advocate for Sjögren's syndrome."St. Thomas' Lupus Trust
"Welcome to the official website of the St. Thomas' Lupus Trust and Dr. Graham Hughes. This website contains information for medical professionals, patients and supporters."3 Autoimmune Diseases Share a Genetic Defect, Scientists Find
(Tucker Library Link)WeHaveLupus.com
“The purpose of our We Have Lupus is to provide a free meeting place online for emotional and information support of Lupus patients and their families. Our admin and moderators on the bulletin board are volunteers here to help with questions and to strengthen the faith of those afflicted with Lupus.”
Adults and Families Health/Medical Sites
"It's how Nurses surf the web"BioMed Central
"an independent publishing house committed to providing immediate free access to peer-reviewed biomedical research. All the original research articles in journals published by BioMed Central are immediately and permanently available online without charge or any other barriers to access."BlackWomensHealth.com
"Dedicated to the Health and Wellness Of Today's African American Woman"Canadian Women's Health Network
"committed to sharing information, resources and strategies to better women's health."Center for Young Women's Health
Children's Hospital Boston "International in scope and collaborative in nature, we are committed to improving the health and well being of adolescent girls with the creation of this Center of Excellence."ClinicalTrials.gov
"provides regularly updated information about federally and privately supported clinical research in human volunteers…information about a trial's purpose, who may participate, locations, and phone numbers for more details."Coping.org
"Tools for Coping with Life's Stressors... home of the Tools for Coping Series - onsite manuals for coping with a variety of life's stressors, authored by: James J. Messina, Ph.D., & Constance M. Messina, Ph.D."DAWN
Ontario DisAbled Women's Network Ontario "Building an inclusive community...fostering virtual activism & individual empowerment locally and globally"Doctor’s Guide
Global Edition - registration requiredHandout on Health: Systemic Lupus Erythematosus
National Institute of Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse NIAMS/National Institutes of HealthHealingWell.com
“… a thriving community and information resource for patients, caregivers, and families coping with diseases, disorders and chronic illness... to help people on their way to "healing well". “ (support, research information, a bookstore, interactive tools and much more)Health On the Net Foundation
"Our mission is to guide the growing community of healthcare consumers and providers on the World Wide Web to sound, reliable medical information and expertise. In this way, HON seeks to contribute to better, more accessible and cost-effective health care... HON's MedHunt©  and HONselect©  offer all users the best-available Web sites and support groups, medical images and terminology, journal articles and news."Hospital for Special Surgery Rheumatology.HSS.edu
"the Center of Excellence in Rheumatology Care and Research...integrated and comprehensive information about musculoskeletal conditions..."Joslin Diabetes Center
"To improve the lives of people with diabetes and its complications through innovative care, education and research that will lead to prevention and cure of the disease."The Kidney Foundation of Canada
“… has helped millions of Canadians suffering from kidney failure and related disorders such as high blood pressure, kidney stones, diabetes and urinary tract infections."The Mayo Clinic
(search “lupus” for great articles)Medscape
(requires 2 page free registration)National Jewish Medical and Research Center
"the only medical and research center in the United States devoted entirely to respiratory, allergic and immune system diseases, including asthma, tuberculosis, emphysema, severe allergies, AIDS, cancer and autoimmune diseases, such as lupus."NurseZone
“Designed by nurses, for nurses, NurseZone.com is the only nursing Web site you'll ever need.”PDR.net
(no acess without free membership registration) the Physicians' Desk Reference online home. "PDRhealth offers reliable healthcare information for consumers and healthcare professionals. NexProfiler Treatment Option Tools are free interactive resources providing patients, their families, and physicians with customized, evidence-based treatment options for cancer, heart disease, and lung disease."PubMed
National Library of Medicine (biomedical article database)Randall Chronic Pain Scale
"No two people experience pain alike. What makes this scale unique is that it allows you to create a personal scale using your own words to describe how your pain feels to you and how well (or not) you are able to function at each of the self-described levels."Rx-List
"Search the RxList database for brand name, generic name and pharmacologic category."SafeMedication.com
"Pharmacists helping people make the best use of medicines"The Sensory Garden
"A site and garden especially designed for people with Multiple Sclerosis and a valuable asset for anyone disabled or elderly and their carers. As a carer or a disabled person you will find both refreshment and inspiration here!" Take a virtual tour.SEVERE.net
“Social Security disability law information source - David A. Bryan”UrologyHealth.org
"...written and reviewed by urology experts in partnership with the American Foundation for Urologic Disease…search by choosing from adult or pediatric conditions..."USA TechGuide
"Empowerment by Choice... A Web Guide to wheelchair and assistive technology choices, related information and articles, wheelchair views and reviews. Promoting user involvement in the selection of appropriate assistive technology." (with links and extra resources galore)
Flu and SARS Links
Flu LinksCDC - Influenza (Flu)
U.S. Center for Disease ControlThe Flu ScareWHO - Influenza (Flu)
SARS LinksSARS – CDC
U.S. Center for Disease ControlSARS Watch.orgSARS – WHO
World Health Organization
Books on Lupus
Half.com –Lupus Books
(good books, really cheap - 115 books on lupus, including “The Lupus Book: A Guide for Patients and Their Families” by Daniel J. Wallace MD. $15.00 here - $20.97 at Amazon.com )Geometry.Net – Books on Lupus
(including “Lupus: the Facts” by Graham R. V. Hughes, Head of the St. Thomas Hospital Lupus Unit in the UK. Published 2002, $19.95)LFA Store
Lupus Foundation of America’s bookstore. “The LFA Store has books, brochures, videos, awareness kits, and other educational materials to help individuals with lupus and members of their family better understand and live with lupus. The LFA Store also features merchandise to help promote awareness of lupus and show your support for those affected by the disease.”
Daniel J. Wallace MD is the author of “The Lupus Book: A Guide for Patients and Their Families”, "Fibromyalgia: An Essential Guide for Patients and Their Families, "The New Sjogren's Syndrome Handbook" and "Fibromyalgia & Other Central Pain Syndromes". Working with other credited writers, Dr. Wallace has produced "Taking Charge of Lupus: How to Manage the Disease and Make the Most of Your LIfe" co-written with Maureen Pratt and David Hallegua, "All About Osteoarthritis: The Definitive Resource for Arthritis Patients and Their Families" written with Nancy E. Lane, "Making Sense of Fibromyalgia" and "All About Fibromyalgia", the last two co-authored with Janice Brock Wallace. You can find brief summaries, reviews and the lowest prices for Dr. Wallace's books at Shopping.com
, Half.com (listed just above) and other sellers online.Seek Wellness Alternative/Complementary Medicine Bookstore Lupus Novice: Toward Self-Healing
by Laura Chester 1998. $12.56 Used Price: $3.99 "Recommended by Dr. Andrew Weil in Natural Health, Natural Medicine"WellnessBooks.com - Lupus Bookstore
(HealingWell.com – 6 ½ pages of lupus related books, to be purchased through links to Amazon.com.)
AuthorsDen – Insightful Writers
is an actress, photographer and writer - she is also a very human being. In the process of "being", she has become so expressive that her words draw the reader into her experience and make it feel like their own. "Too Late For The Early News" and "Angels In Heaven" will reach right into your hearts. Bad Hair Day
flows from her heart, as diabetes runs in her family. The poem, "Tango, For My Parents" is written in both Spanish and English and inscribed with an appreciative understanding of lifetime love.Carolyn Howard-Johnson
is the author of “This Is The Place” and “The Harkening: A Collection of Stories Remembered”. A chapter from “This Is The Place” was chosen as a finalist for the Masters Literary Award and this book has won eight other awards. Her second book has won three awards. If you have a book in the works, visit Your How To Do It Frugally
website and check out her "career-boosting" books, "THE FRUGAL BOOK PROMOTER: How to Do What Your Publisher Won't" and "THE FRUGAL EDITOR: Put Your Best Book Forward to Avoid Humiliation and Ensure Success". She is the founder of Authors' Coalition
and hosts Sharing With Writers
at blogspot and a newsletter
by the same name.
Carolyn is a gentle, humorous woman and thoughtful, inspiring writer, mamanging to be both down home and elegant at once. Don’t forget to visit her well-tended Autors' Den Home Site
site for many more articles, book excerpts and writing tips. She's a favorite of mine and will capture you with her winsome writing too.Dennis Lewis
is a Healing Tao instructor and expert in the arts of breathwork and meditation. He has written "Sacred Tradition & Present Need", "On the Way to Self Knowledge", "The Tao of Natural Breathing: For Health, Well-Being and Inner Growth" and "Free Your Breath, Free Your Life". He also offers a two-cassette audio program, entitled "Breathing as a Metaphor for Living". His article, "Belly Breathing" is a terrific exercise and "Personal Problems & Spiritual Growth" can contribute to a deeper understanding of our own potential for improvement.Darlene M. Caban
has been through nearly seven years of hemodialysis and her medical experiences have sharpened her savvy, sassy wits. Whether you’re more likely to stand over the dialysis recliner or lie in it, Darlene’s incisive insights will spark your interest. "Dar's Guide to Dialysis Nurses", "This is a hospital! You people should know this stuff!", "Coming Back: The will of the doctor versus the will of the patient", "If you're a dialysis patient, anger can kill you" and "Lessons learned on dialysis" should be must-reads for anyone employed in this field and anyone who might be on the receiving end.Marilyn C. Morris
is the author of two books and one entertaining, audacious, high-stepping attitude. She’s written a supernatural mystery set in Texas and a book on her adventures as an Army brat growing up in Europe and the Far East. To my delight, she’s also posted a short tale, "Speaker at 100 Women in Red Rally" that plucked my heartstrings and tickled my funnybone. Under "events", it's a sassy take on her travails with lupus, vasculitis, diabetes and a pair of redesigned, red, high-top sneakers. Her wolf better be on his toes because this lupie’s got some mighty moxie.
"My wife is Australian. I'm American. Our cat is from Hong Kong. Two of us taught English in China for over 6 years. I also taught Advanced English Writing and Creative Writing in several universities in China, and was the senior editor of a designated Key Learning Resource for universities throughout China. In 2006 we moved to Chiang Mai, Thailand where my wife continues to work as an artist and I'm a full-time editor. I also telecommute to the US, Singapore and Hong Kong as an editor and legal transcriptionist. I've been writing since 1978 and editing since 1990. I made the transition from tech manuals and sales literature to fiction in 2000."
This is a great intro to the life, the mind and the writings of Michael LaRocca, the most prolific and one of the most likable writers I've ever known and I've known quite a few. Michael is a smart, sharp, honest and entertaining author. His books include "Rising From The Ashes", An American Redneck in Hong Kong", "Vigilante Justice" and "The Chronicles of a Madman", which is an anthology. His latest book, "Who Moved My Rice"
("you can't eat grits with chopsticks") is also his latest award-winner. In this book, Michael writes vividly of his unusual life as a Spoken English teacher in Hangzhou, China.
If you don't read Thai, scroll down for a page full of great links and gifts for writers and those who aspire to that job description. You can visit Who is Michael LaRocca (And why should you care?)
for the answer to that intriguing question, a list of his books with brief synopses and how to order them. At his Editing Service
he can help you turn your pages of lovingly strung together words into readable, salable books and guide you into becoming your own editor. This is no small feat since, although most of us fancy we're terrific editors, few of us actually have the eye, the economy of words and the impact of imagery to really earn the title.
Michael is a three time EPPIE finalist and winner of many other awards including two Sime~Gen Readers Choice Awards for nonfiction. His books and short stories are fascinating and his talents are especially impressive since each book is written in a different genre. This proves his brain does more than just keep his eardrums from banging together like cymbals. Book excerpts, short stories and articles on writing from this editor of over ten years experience are at his AuthorsDen
site. You can subscribe to his enjoyable newsletter by visiting Who Moved My Rice at Google Groups
. He'll keep you absorbed by his life in Thailand, his cat Picasso's adventures and keep a smile on your face, even on days when smiles don't easily crinkle up. Thanks to Michael, you can experience all the fun, furor and frustration of living in a foreign (to you) land, without ever having to leave your home sweet seat. If you love to read or write, Michael has something to offer you.Niki Collins-Queen
is a children's therapist and modern day pioneer, trekking the wilderness to find the center of her universe. She is the author of "Earth, the Forgotten Temple: A Spirit Quest in the Wilderness", which chronicles her explorations and expresses her keen observations. In articles such as, "People-Centered Health Care is an Art Not a Business", "Living With Chronic Illness" and "Hidden Agendas In The Cancer Industry" she shares her opinions of society’s ills and their effects in our lives. Her writing stimulates thinking in those who dare to care.Regina Pounds
has written the quirky romantic historical novels, “LEONORA: Tulips in Winter”, “Theo's Ghost” and “Lord Eaglebeak”. Her books capture the senses and her articles and poetry enhance the reader’s interest. A demanding childhood in post-war Berlin and the difficulties of coping with Fibromyalgia have fueled her artistic endeavors and brought depth to her talents. As a writer or a reader, be sure to see her article, Book Buyer Beware on the perplexities of dealing with print on demand publishing and the wise range in prices.Sherry L Gibson
is the author of “Only a Game’, a newly published mind warping psychological horror novel. She’s also the founder of a wonderful online lupus support group, LWLupus
(Living With Lupus), a wife, parent and grandmother and my dear friend. Her personal story of Living With Lupus is published at her AuthorsDen website, along with a huge portfolio of verses including “Our Final Waltz”, "Little Vampire Baby", "Silent Wolf", "Memories" and so many more. Sherry’s writing creatively expresses her passion for family and life and her powerful will to win, despite the wailing of her wolf.
Bookstores and Communication Tools
"... the world's largest online marketplace for used, rare, and out-of-print books. Abebooks connects those who buy books with those who sell them, providing abundant selection at affordable prices. Every day, thousands of people find books they want on Abebooks... Libros en Español."Bill Moyers on Being a Journalist
"Bill Moyers, one of the most recognized and respected journalists in America, anchors an hour-long weekly news series offering fresh perspectives and analysis on today's events, issues, and the ideas that are shaping our world. NOW with Bill Moyers
includes documentary reporting, in-depth one-on-one interviews and articulate commentary from a wide variety of media-makers and those behind the headlines… Our goal is to illuminate news and ideas that can help viewers become more engaged and active citizens at the grassroots of democracy."Cambridge Dictionaries Online
- Cambridge University Press "We publish dictionaries for people learning English all around the world... Cambridge dictionaries range from intermediate to proficiency level. They are clear, completely up-to-date and very easy to use."Free-eBooks.net
"specializes in collecting free fiction, tutorial, marketing and business eBooks as well as resources to aid you in promoting eBooks. Our featured eBooks are below, please click on the name of the eBook to download to your hard-drive. We also have links to useful resources for eBook Publishers."The eBook Directory
"is the No. 1 free e-book information portal on the Web, bringing you the biggest and most comprehensive listing of FREE eBooks and texts online... simplifies the search for the best free ebooks online... includes links to ebook publishing resources, software and helpful articles on publishing your own ebooks."Infoplease
"Information Please has been providing authoritative answers to all kinds of factual questions since 1938—first as a popular radio quiz show, then starting in 1947 as an annual almanac, and since 1998 on the Internet at www.infoplease.com. Many things have changed since 1938, but not our dedication to providing reliable information, in a way that engages and entertains."The Journalist's Toolbox
“features more than 20,000 Web resources helpful to the media and anyone else doing research. Use the pulldown menu or search engine to locate information from a variety of beats and news industry-related topics.”The Literary Web
"a hypermedia guide to literary resources available on the World Wide Web... geared toward readers of fiction and poetry as well as those who write it, and those who teach it."MemoWare
"thousands of documents (databases, literature, maps, technical references, lists, etc.) specially formatted to be easily added to your PalmOS device, Pocket PC, Windows CE, EPOC, Symbian or other handheld device. The documents available here come in a variety of formats and cover a wide range of topics. Note that shareware documents are very rare here at MemoWare, as 99+% are totally without cost to you."OneLook® Dictionary Search
"... a search engine for words and phrases... definition or translation... into other languages. 5,998,569 words in 964 dictionaries indexed." (this is a one-stop dictionary mall, since by starting your search here, you can access dictionaries, thesauri and encyclopedias in a wide range of specific categories, including general, medical, scientific and tech.)The Online Books Page
"facilitates access to books that are freely readable over the Internet. It also aims to encourage the development of such online books, for the benefit and edification of all...An index of thousands of online books freely readable on the Internet."RosettaBooks Retail Website
“... instant and affordable access to e-books by many of the greatest authors of the twentieth century including George Orwell, Virginia Woolf, Kurt Vonnegut, William Styron, Ray Bradbury, and Agatha Christie. We select only the finest titles for our readers.Scholastic.com
"the global children’s publishing and media company... instilling the love of reading and learning for lifelong pleasure in all children. Recognizing that literacy is the cornerstone of a child’s intellectual, personal and cultural growth, Scholastic, for more than 83 years, has created quality products and services that educate, entertain and motivate children and are designed to help enlarge their understanding of the world around them."Soul Food Cafe
"a portal for artists and writers alike… a safe haven where creativity flourishes. The Soul Food Cafe aims to promote writing and creative pursuits as a daily practice. The site is quite literally overflowing with healthy and tasty morsels for every artist. It’s full of tips, techniques, references and encouragement."Thesaurus.com
"... simply type a word in the gold search box and click the 'Look it up' button. A list of synonyms and antonyms will be returned. The thesaurus that appears on this site is Roget's Interactive Thesaurus."Web Book Publications
" We offer high-quality free contents and also encourage you to publish your works on our site, either for free or for sale. As of June 1, 2003, our website traffic was ranked # 4 among all eBook publishers and sellers.Wikipedia
"… a multilingual project to create an accurate and comprehensive free-content encyclopedia. We started in January 2001 and are currently working on 203939 articles in the English version. Visit the help page and experiment in the sandbox to learn how you can edit any article right now."Words Without Borders
“The Online Magazine for International Literature .. to promote international communication through translation of the world's best writing--selected and translated by a distinguished group of writers, translators, and publishing professionals--and publishing and promoting these works (or excerpts) on the web… an advocacy organization for literature in translation, producing events that feature the work of foreign writers and connecting these writers to universities and to print and broadcast media."yourDictionary.com
"... the most comprehensive and authoritative language portal on the web with more than 2500 dictionaries and grammars in over 300 languages, games that build language skills, and a forum (The Agora) for discussing language issues with the logophile community."
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