Illuminating Links
Because of increasing scientific research on lupus, significant advances are being made. This proves the point made here, in "Lupus Awareness Month", just down this page. If we want to contribute to lupus research, we can accomplish more through direct donations. Not everyone who claims to support our cause is actually supporting our true interests. Some people are just in it for the money - we're in it for life.
"Thanks to a newly identified gatekeeper gene, lupus is now a preventable disease for mice. Humans could be next." The RU Scientist at Rockefeller University.
Lupus illuminated By Lynn Love.
"In the treatment of severe lupus nephritis, mycophenolate mofetil has emerged as an alternative to cyclophosphamide, offering a major advance in the therapy of lupus nephritis." JAMA Vol. 293 No. 24, June 22/29, 2005
Pharmacological Therapy of Lupus Nephritis Derek M. Fine, MD - JAMA. 2005;293:3053-3060.
Not all research is good for us or for our children. Without an ethical rudder and a moral compass, good intentions can be devoured by sharks in the water.
EPA rule loopholes allow pesticide testing on kids By Andrew Schneider, Baltimore Sun September 15, 2005 and reprinted by the San Francisco Chronicle.
There are some very interesting articles listed at the pages linked below. Please take a good look - you may find something that relates to your circumstances or those of someone you love.
Most Viewed Health News on Yahoo! News The top health news articles from Yahoo! News These next two links were contributed by an LNL reader who wrote "The first is on the disability process for lupus patients. The second is a good alternative med page for lupus.". I'd like to give due credit for the aid but didn't get a name. I'm very glad for the contribution and appreciate the consideration. As I've written before, this work and this site are of, for and by lupies, for the benefit of us all.
APPLYING FOR BENEFITS WITH LUPUS from Disability Secrets.com
Alternative Medicine and Lupus, Part 1 Vitamin Stuff .com. There's a link there, at the end of the article, that leads to its Part 2.
LNL's Articles With Attitude
Hello Dear Readers,
As I promised in my last post, we now have much more to read. Our log has rolled over to show us a whole new side, Lupus NewsLog's
Articles With Attitude. Here, you'll find updated and newly written articles on pain, nutrition, medical research and advances, our healthcare rights and more. When we exercise our bodies, our minds and our rights, life can really start to tone up.
Exercise your reading rights - there are more articles with attitude coming up and you're always welcome here among the pages of LNL. Remember, updated articles are as important as those fresh off the keyboard because research into autoimmune diseases is continually re-studied and new details or even radical reassessments are often made.
Our friend Kris has written up her lupie life story
Running With The Wolf as a worthwhile addition to our Lupus NewsLog Thrivers pages. Like many of us, including Sheila, another contributing Thriver, Kris is a nurse, dedicated to her patients and her work. It's now common knowledge that the risk factors for systemic lupus run higher among nurses like Kris, teachers as I once was and probably among hairdressers, too. The awareness is there but we're still seeking the reasons. Until we find them, shape them into tools and use them to change our lives, let's live like Kris, vibrant with love and laughter.
Reconstruction Blues-Pain Relief on Tap
Dear Readers,
Some of our links have fallen and they can't get up so I'm busy working on them right now. Ol' Wolfie may be gnawing on our Lupus NewsLog life-line but he's always biting off more than he can chew and our heart to heart connection's in far better shape than he'll ever be.
I'm also tapping out a couple of requested articles about pain relief for our new
Lupus NewsLog's Articles with Attitude pages. I could suggest y'all each buy a scattergun, fill the barrels with rock salt and let your wolves have it hard but since I am Buddhistically non-violent and, besides, these rangy wolves actually reside within us, this wouldn't be a good idea at all. There'll be much safer ideas in the articles. After you read data on some of the pain related research, you might be tempted to blast at a couple of specified others/agencies but, nope, we are loving - and legal, not lethal - lupies.
This is Sunday evening and I hope to have them all done, up and at ya by Tuesday or Wednesday night. They'll be going up one at a time so some will be up sooner, some perhaps later but all just as fast as I can make it. I aim to please - but not with a scattergun. To those whom much is given, much is required and we've for sure got our fair share of something so let's try to work it out, not throw it down.
Thank you for your patience and understanding.
Shar
Latest Links
Our good friend Julie, author of
Julie’s Journey at Lupus NewsLog Thrivers and publisher of The Lupie Bin has a new URL. The
Lupie Bin is one of the very best, most comprehensive and appealing lupus information websites around. You can learn a lot here and enjoy doing it.
Lupus Drug Fails Goals About LymphoStat-B for SLE, from Human Genome Sciences. New York Times, By REUTERS. (New York Times may require free registration to read full articles)
Human Genome Sciences offers a press release about the phase 2 clinical trial results of their SLE drug, LymphoStat-B. “While the trial failed its primary goals, it reduced the symptoms of the disease at 52 weeks in a subgroup of patients representing 75 percent of the study's patient population, the company said.”
Trying to Shut Off the Body's Friendly Fire By Andrew Pollack, New York Times.
Lupus News at Medical News Today “The latest lupus news and lupus articles published daily from Medical News Today. All articles are ordered by date.” There are several very interesting research based articles here.
“…and hold the onions” “What follows is a journal of a live donor liver transplant written by two people, Chris and Shari.”
Painkillers cut risk of mouth cancer Soy not so smart for lowering breast cancer riskDubious Antibiotic Cancer LinkWomen told to show breasts 'TLC' Low-income women in US underuse breast screening“The Basics” “3 legal papers you shouldn't live without” By Liz Pulliam Weston
Lupus Awareness Month
Over the years, I've know people to say, "There is nothing worse than lupus" and maybe we all feel that in our worst moments. There are times when symptoms are so invasive and pain is so severe we are almost shattered in mind and body and smashing our heads against the wall would seem like pain relief, at least while we'd be unconscious.
In some ways, when it tries to burn us down to the ground, lupus does feel like the worst thing that could happen to anybody. If we truly think it's the worst catastrophy ever, maybe we're not reading the daily news. Nowdays, there's a lot of competition for most horrible event ever. Lupus can be our catalyst for change and wisdom, but only if we know that, far worse than having lupus is thinking our lupus is the be-all and end-all of our whole lives, because then it surely will be.
October is Lupus Awareness Month, although, for those of us who have it or have a loved one who has it, it's every month of the year. Still, every October we are reminded that there is no cure for lupus, that there has not been a new and truly effective medication for lupus in decades, that many of us live with obvious symptoms but no definitive diagnosis and that somewhere, every day of the year, someone dies because they have lupus.
We may feel helpless sometimes against the force of this powerful disease but there are things we can do to assert ourselves, contribute to research and educate others. Lupus used to be one of the most unknown illnesses in the world but the mystery guest is signing in and we are speaking up. We can’t expect instant abracadabra results – ever tried to pull a wolf out of a hat? – but we can do a lot to rattle Ol’ Wolfie’s cage and loosen his grip on our lives.
We can document our symptoms on paper and give copies to our doctors to aid in diagnosis and treatment. We can share the URLs of good lupus websites and weblogs with family and friends. We can write letters to the editors of our local newspapers, to let them and their readers know the significance of this month and share non-profit phone numbers, URLs and addresses. These actions won’t cost us more than a couple of sheets of copy paper or envelopes and postage stamps.
We can buy pins, books, wristbands ($1. each + shp.), Lupus Now magazine subscriptions and more through the
Lupus Foundation of America (LFA) and support lupus community efforts and research.
St. Thomas’ Lupus Trust (STLT) in the UK offers wristbands in two sizes and charges are contributed to that charity. Click Now will contribute 50% of all revenues earned from your Ask Jeeves, Google, LookSmart and Yahoo searches if you set up your homepage at St. Thomas’ Lupus Trust. To do that, visit the STLT
Click Now page and encourage family and friends to make the switch, too.
If we’re well enough to get out and about, we can volunteer and help our local lupus organizations to disseminate information, help hold meetings and sit on boards.
Lupus Canada has a great need for volunteers right now.
Throughout the world, lupus organizations are made up of ordinary individuals who have lupus, love someone who does or just want to help others. They're all struggling to share information and compassion with those who need it badly. If we can afford it, we might donate funds each month or even once a year. We can ask those who might give us gifts to make donations instead for this crucial cause. There are many lupus research links on this page and other sites – please use them well.
Beware of those who offer lupus wristbands and other items at marked up prices - that money doesn't support lupus research, it supports their lifestyles. There’s no need to pay big bucks for lupus t-shirts with negative slogans made for profit. Why fill somebody’s personal pockets with your hard earned cash and take an emotional downturn, too?
You can make your own shirts and maybe a few for holiday gifts for less than $15. each plus shipping or maybe even with no shipping fees. If they’re upbeat, you’ll feel better each time you slip one on and you won’t just be informative, you’ll be positive and you’ll be remembered.
Check out do it yourself (DIY) sites like
Zazzle.com. Drop in on
CustomInk.com ,
CafePress and other DIY sites. Type “make your own t-shirt” into your search bar and explore. Don’t forget, when you search you can be automatically contributing to lupus research.
Just don’t anybody try to sell me any lupus items that prey on our fears and at a jacked-up price or I’ll sic my rabid wolf on ‘em. We should be promoting our community, not pilfering from it. To paraphrase an old Beatles song, I am you, you are me and we are all together – we are the faces of the wolf.
Support Breast Cancer Prevention All Year
By the way, October is also Breast Cancer Awareness Month. That cause and those whose lives have been affected could use our support, too. One of my dearest friends unintentionally donated her bosom to the cause of breast cancer research. My sister-in-law, in love and in spirit, died on Easter Sunday from cancer that began in her breast 15 years ago. Please help all you can in any way you can. You can even give a
free click everyday all year to donate the cost of mammograms and help save lives – maybe even your own someday or perhaps the life of someone you love. Life isn’t really about what takes us down – it’s about what we can do to lift each other up. And that, my friends, is plenty.