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View Full Version : Quick hello and a piece of my mind



pegslegs25
10-18-2006, 06:01 AM
Hello everyone. I'm kind of new to this, in fact I barely knew what lupus was before someone I love very much was diagnosed with it. It was very frustrating when we didn't know what was wrong(the searching, testing, and digging has gone on for almost 8 years), the doctors seemed to never believe her and when they did they didn't know what was wrong. After a long hard path a doctor finally took the time and the effort to really figure out what was going on. I'm trying to learn everything I can about lupus so I can help in any way, any information would be greately appreciated. Some of the sites I have found have been really helpful, and some of them have been downright confusing. So far I really like this site, I have a feeling this forum is a really great source of support and stress relief for people dealing with the every day struggles of lupus. :) Thanks all.

Jessica

MARYCAIN
10-18-2006, 07:27 AM
Hi, Jessica - your loved one is very fortunate to have you looking out for her. Sadly, what you describe is very common - many lupus patients may go for years without getting a proper diagnosis, with others are misdiagnosed with psychiatric illnesses or other conditions. Part of the problem is that lupus can look like so many other diseases, and some of the symptoms like fatigue and joint pain are common in many illnesses.

You can get a lot of basic information about lupus from websites such as the Lupus Foundation of America, the Lupus Alliance, the Lupus UK website, and arthritisabout.com. There are links to many of these websites on the homepage of this forum under "resources".

There are also many good books available, you can probably find some of them at yout local public library, and the librarian can get others for you through interlibrary loan.

The Lupus Book: A Guide for Patients and Their Families - revised edition 2005
by Daniel J. Wallace (This is one book worth purchasing to keep available as a reference)

Taking Charge of Lupus: How to Manage the Disease and Make the Most of Your Life
by Maureen Pratt, David Hallegua, Daniel J. Wallace

The First Year - Lupus: An Essential Guide for the Newly Diagnosed
by Nancy C. Hanger, Elena Massarotti

Living with Lupus: The Complete Guide, Second Edition
by Sheldon Paul Blau, Dodi Schultz

Lupus : Everything You Need to Know
by Robert G. Lahita, Robert H. Phillips

Positive Options for Living with Lupus : Self-Help and Treatment
Philippa Pigache

Lupus Q&A
by Robert H. Phillips, Robert G. Lahita, Barbara Bush

Talking About Lupus: What to Do and How to Cope
by Triona Holden

Lupus - A Medical Dictionary, Bibliography, and Annotated Research Guide to Internet References
by Icon Health Publications

You Don't Look Sick: Living Well With Invisible Chronic Illness (Paperback)
by Joy H. Selak, Steven S. Overman

Coping With Lupus: A Practical Guide to Alleviating the Challenges of Systematic Lupus Erythematosus
by Robert H. Phillips

Coping With Prednisone: (*and Other Cortisone-Related Medicines) : It May Work Miracles, but How Do You Handle the Side Effects
by Eugenia Zukerman (Introduction), Julie R. Ingelfinger

Sick and Tired of Feeling Sick and Tired: Living With Invisible Chronic Illness
by Paul J. Donoghue, Mary Elizabeth Siegel

Lupus Handbook for Women : Up-To-Date Information on Understanding and Managing the Disease Which Affects 1 in 500 Women
by Robin Dibner, M.D., and Carol Colman

Coping With Lupus : A Guide to Living With Lupus for You and Your Family
by Robert H. Phillips

Systemic Lupus Erythematosus
by Robert Lahita (medical textbook - noy geared toward toward patients)

Dubois' Lupus Erythematosus
by Daniel J. Wallace (Editor), Bevra Hannahs Hahn (Editor), Franci Quismorio (the original medical textbook on lupus)

A Dictionary for Lupus Patients
Linda K. Rohner (Editor)

New Hope for People with Lupus: Your Friendly, Authoritative Guide to the Latest in Traditional and Complementary Solutions
by Sara J. Henry, Theresa Foy Digeronimo

Medical Library Association Encyclopedic Guide to Searching and Finding Health Information on the Web
edited by P. F. Anderson and Nancy J. Allee

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If you live close to a major hospital, they often have a medical library which may be open to the public, and most medical librarians are very willing to help you research a particular condition and find the latest research. If there is a chapter of the Lupus Foundation of America anywhere near you, they may also have a library of books and other information available.

One thing you do want to be cautious of when researching medical information on the Web - you have no guarantees that the information is up to date or accurate. There are many reputable websites that have well-documented medical information that is very reliable - these include the websites listed above, and medical websites like WebMD, Medscape, and the website runs by medical institutions like Johns Hopkins, the Mayo Clinic and the Cleveland Clinic. There are also many commercial websites advertising "cures" or "new miracle treatments" for lupus - most of these are trying to sell you something so take their information with a whole shakerful of salt, not just a grain. Healthy skepticism is probably your best defense against being scammed - if something sounds too good to be true, it probably is.

Hope this info helps!

pegslegs25
10-26-2006, 11:54 AM
I have been doing my research online but wanting to get some books so this gives me a good place to start. I hadn't thought about libraries! that way if I find a book I find helpful I can buy it and if it doesn't help much I don't spend the extra $$. Thanks for your kind words and the many resources you mentioned. :D yeah, and as far as the if it sounds too good to be true it probably is... I agree. there's always people out there saying if you drink some magic juice or eat some magic pill you will be all better. I wish they'd quit it... it gives people false hopes!! *grumbles at scam artists*

Jessica