Lupus NewsLog

Lupus and the War Within

2007-07-18T22:00:00.000-07:00

An elder Cherokee Native American was teaching his grandchildren about life. He said to them, "A fight is going on inside me ... it is a terrible fight and it is between two wolves. One wolf represents fear, anger, envy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority, and ego. The other stands for joy, peace, love, hope, friendship, empathy, generosity, truth, compassion, and faith. The same fight is going on inside you, and inside every other person, too. "They thought about it for a minute and then one child asked her grandfather, "Which wolf will win?" The old Cherokee simply replied, " The one you feed."
***
Recent clinical studies into cancers have some researchers questioning the usual practice of attacking the disease. They believe now that current regimes based on drugs and radiation may only aggravate disease reaction and spur a more aggressive spread of cancer. These researchers hope that gentler, carefully thought-out individualized programs will calm cancer and give those coping with it a better chance of healing and survival. While battling my own inner wolf, I learned that fighting tooth and nail only provoked a more rabid response. Now, I strive for peaceful coexistence and though there are still difficult bouts and and occasional time-outs, Ol’ Wolfie and I tread more softly towards each other and I have lived with SLE for well over fifty years. If we think of lupus as our mortal enemy and feed it with our fear, we allow it to wage shock and awe on us. In this most intimate conflict, we must be armed with knowledge in order to win. When it comes to surviving the struggle within, the wise warrior learns to make love, not war.
***
Throughout this work, we've investigated the multitude of environmental factors that can trigger and worsen lupus. I've written on the roles healthcare and medical support play in our well-being and the importance of knowing, understanding and enforcing our medical rights. I've reported on medications, supplements, nutrition, assorted chemicals and more and there's plenty more to come. Modern warfare, industry and "better living through chemistry" are rapidly changing our world and environmental science is finding out just how it all hits home.

We all carry some biological factors for various illnesses but they usually need specific stimuli to generate disease activity. After decades of debate, our ancestry is now one recognized component, thanks to our own persistence, improved medical record keeping and more specifically oriented research. Our ancestors' origins, their health and their diseases can have tremendous impact on our own health and many of us have relatives who also have autoimmune diseases.

Diseases like asthma, cancers including childhood leukemia and autoimmune diseases such as lupus, diabetes, fibromyalgia, multiple chemical sensitivity, scleroderma, reynauds, sjogren's and others are rapidly increasing over the last couple of decades alone. Cancer rates are expected to double within less time than that and many responsible researchers believe our chemicalized environment is the most toxic culprit. Researchers sometimes love to disagree but many factors have already been identified, with others under suspicion.

We need to know what lurks in our water, our air, our food, medications, cosmetics, household products, back yards, building materials, schools, hospitals, parks and playgrounds. Information that should splash across the front pages of every big newspaper and highlight every major broadcast is often buried in back pages or mentioned as an aside. There may always, unfortunately, be wars and rumors of wars but in this most intimate conflict, we must be armed with knowledge, in order to win.

The war on Iraq has unleashed its own army of chemical hazards in earth, water and air. Iraqi soil is contaminated by depleted uranium from spent weaponry used in both gulf wars yet gulf war illnesses are only now being officially acknowledged.Sometimes it seems like we're all living in Dodge City and everybody wants to be Wyatt Earp. My Cherokee grandfather knew Wyatt Earp and called him, "A back shootin' SOB" - not much of a role model. but despite my Grandpa’s colorful language, we can't necessarily blame his mother. Like us, he had the choice to blaze a war path or explore a path of peace.

In our lives with lupus, we often use warlike metaphors, with good reason. After all, we were drafted or conscripted by disease so we fight and survive battles, developing the gritty determination of seasoned warriors. In our efforts to combat our illness, metaphors dramatically accent our words, lace our thoughts together and influence our attitudes.

An assertive attitude can be a worthy and formidable weapon but if we view life as a battlefield, then we're always at war. If we think of lupus or any illness as our mortal enemy, it assumes far more power than it has naturally, because we allow it to wage shock and awe on us. When we're living in the stress of fight or flight mode, our adrenaline develops a hair trigger that's never fully holstered.

When we overload on built-up stress, we implode, blowing like bunker bombs, exploding from deep inside. We're bombarded with shrapnel from cluster bombs of hormones, cholesterol and systemic chemical assault. Our vital body fluids and essential nutrients are drained, leaving us prey to infection, virus and full blown flare. This is indeed biochemical warfare, with the warrior trapped inside enemy lines, caught in an endless internal firefight.

To win with lupus, we do need to be warriors when appropriate but we also need to be explorers, students, scholars and most of all, we need to be diplomats. We can't win this one by imposing sanctions or declaring war on ourselves - that will surely do us in. We'd better learn instead to observe, understand and nurture our true needs. When it comes to surviving the struggle within, the wise warrior learns to make love, not war.

Weapons are forged to attack, fight and destroy, while tools are crafted to reveal, create and refine. With supple hands and modeling tools, sculptors coax shapes from clay, freeing the art hidden within the lumpy dough. Weapons are effective in warfare but they're counter-effective overkill when negotiating a truce. If we want to shape and recreate our lives with as little collateral damage as possible, we'll accomplish far more with tools than with grenades.

We are the battleground, so we must learn to live in peace. Research and communication are powerful tools and we learn even more, by sharing what we learn with each other. We're connected by our health, our humanity and our hope. It is our shared experience, pooled research and stalwart support of each other that teach us how to survive this illness and can even teach us to thrive, despite war, within or without.

Pretty Green and So Good Looking

2007-04-23T01:27:00.000-07:00

Despite Kermit the Frog's pitiful plaint, "It's Not Easy Being Green", it can not only be easy - see the going green bit above - but sweet-smelling and good-looking. Try the homemade beauty care tips in the Kitchen Beautician
another "You Go Green, Girl!" article from Good Housekeeping Magazine and iVillage. Good magazine, good website, good ideas - go for it and enjoy being a girl - or a guy. These are not gender specific tips. Anybody can appreciate soft skin, along with all the benefits that brings.

Easy Ways to Go Green

2007-04-23T01:40:00.000-07:00

Green choices aren’t only good for Planet Earth; they're good for all of us, especially those living with limiting health conditions. By now there’s no doubt that chemicals in our environment affect everyone’s health and have a bigger impact on us if we are hypersensitized by allergies and illness. It amazes me how many folks think green thinking will break their brains and green living will break the bank. Not a chance.

For starters, just read Easy Ways to Go Green
from Good Housekeeping Magazine at IVillage.

Inheriting the tendency for making green choices has helped me live longer and healthier, while having a good time doing it. A little responsibility never killed anybody but a whole lot of us can die because of irresponsibility. How would you feel if someone trashed your creation? After all, if we believe this earth is a gift from the Giver of Life, shouldn’t we cherish the gift, to honor the Giver?

Read to Live - Be Lupus Literate

2007-04-20T23:46:00.000-07:00

Low Health Literacy Puts Patients at Risk: The Joint Commission Sets Forth Solutions to National Problem.
February 07, 2007

Knowledge is only power when we can understand the language it comes in. To survive well - or at all -with lupus or any other severe illness, we need to be sharp, smart and snapping it up.

If you don’t read well or at all, find someone who does and will read health information for you. Join an English as a Second Language class or find a literacy program in your community.

If someone you know can’t read to save his life, read him his rights and help him access them. This will make you a true hero and give him a chance to be a true survivor. He - and we - will love you for it!

Body and Mind: Melding to Meet Our Needs

2007-04-20T23:06:00.000-07:00

Several LNL readers are Pastors’ wives and the stress of their mission can be difficult, especially while coping with family and serious illness. It can be isolating to stand on a pedestal, with little room for even one understanding person to stand beside you in solidarity.

Thankfully, The National Coalition of Pastors’ Spouses.
(NCPS) is a dedicated minority-inclusive support group, sending its 2500 members weekly emails and is very focused on responding positively to illness and healthcare needs.

Whether we recognize it or not, body and mind are wedded in teamwork till death they do part and both are greatly influenced by whatever affects the other. A cooperative mind-body relationship can help us be healthier and have more to share that may help others as well.

Introducing CarePlace

2007-03-23T22:48:00.000-07:00

I’ve found a terrific website or, rather, it found me. Jenny, from CarePlace, sent me an invitation to check it out and share my impressions, opinions and ideas. She, Ben and the rest of the CarePlace team want to create a privacy protective, member only comfort zone for those dealing with their own challenges and those who care for them and want to help. I qualify on both issues, having lived my life on both sides. Lupus NewsLog has a similar intent and approach because the more we learn and the more we share, the more positive possibilities we will discover and everybody can benefit.

As the Internet grows older and wiser, our communities are adapting and expanding to meet our deeper needs. CarePlace is a resourceful site with a multi-dimensional mode, almost like an information mall made for morale-boosting and strongly encouraging individual involvement. We all have both needs and gifts and CarePlace is a gathering ground where both can be enriched.

Many years ago Margaret Mead wrote, “Never doubt that a small group of committed individuals can change the world; indeed, it is the only thing that ever has”. Those of us who are true believers always reach out together to create change.

Ben, Jenny and CarePlace have made such a powerful impression on me that I’ve joined, taking part in discussions and starting an onsite journal. As I wrote recently in Who is this Strange Dame?
I’m used to writing about lupus, not about me but I do believe it’s time for this ol’ wolf wrangler to learn some new tricks.

Luciano de Creszeno wrote, “We are, each of us, one-winged angels and we can only fly by embracing one another”. This has been my email signature quote and my personal motto for a very long time - it is the belief that gave wings to our Butterfly newsletter and still breathes life into these Lupus NewsLog pages.

A principal of Buddhism is, “Life is suffering”, but for a purpose. If we live, suffer and strive to grow beyond our pain, we gain so much that can elevate our own lives and help to uplift others. Come check out CarePlace
with me - you’re likely to find something there, to give and receive, that will refresh your spirit.

Next Lupus Live Chat March 21st!

2007-03-17T19:40:00.000-07:00

Don't forget to tune in for the next Lupus Live Chat at the Lupus Foundation of America on Wednesday, March 21 at 3:00 p.m. Eastern Time, USA. This live online chat will offer recent research info on Kidney Involvement in Lupus. Renal or kidney problems are common in lupus and are among the leading causes of death. Please take your health seriously - even if this isn't an issue in your health, we never know what the future holds and the more we learn, the better we can plan for a healthier, happier, longer life.

Who is this Strange Dame?

2007-03-11T22:55:00.000-07:00

Since my work is about lupus and not about me, that question has only been answered in relation to my life with lupus, in "Living Beyond Acceptance"
in our Lupus NewsLog Thrivers’ pages. Even getting that done took months of pleading, pressure and massive infusions of chocolate before it was published and still it was ordered back to the typewriter for more answers to more questions. I’ve had major surgery that was lots more fun.

Finally, in answer to the misplaced prayers of misguided friends, family, readers and my favorite publisher, I’ll be writing in a personal weblog - uh-oh, be careful what you pray for! Rose Harris, one of my favorite friends, kinfolk, writers and my co-columnist at the famed but now defunct Everyday Warriors has asked me to co-write her weblog, Strange Dame. Rose’s health makes it too hard for her to do alone anymore. I can’t refuse her anything and I’ve gotta admit the name is apt so I’ve already started.

Lupus NewsLog will continue, with my research and writing and Chris’s creation of more yummy, healthy recipes. This is such marvelous work; I meet the most heroic people, who don’t even know they’re exceptional - they’re just doing what they believe in, working in the way that fulfills them. Like Patricia Ionea, the creator of Lupus Romania who‘s also constructing the official Lupus Foundation of Romania. You’ll realize what an historical achievement and breakthrough this is once you read "Welcoming Lupus Romania”
and Patricia’s story, "Learn To Live Again" (Invata Sa Traiesti Din Nou)
in our Thrivers’ section.

It's no wonder why I love this work and I think my work at Strange Dame will swing in sync with my work at Lupus NewsLog, going full-circle and tying it all together with a zippy little bow. But whatever will I write about? Shall I discuss my tri-lingual cats, my Subaru-sized fish, my fascinating family and friends, my previously private sex life and unusual marriage proposals, my place in world events, my world travels and inter-planetary interactions or just stick to the truth? Which of these might be the truth and which might be delusions? What if all are both? Sufferin’ Succotash!

Whatever comes up at Strange Dame
it’ll be more sassy than somber because that matches Rose and me just fine. From our email conversations over the years and my lupie bio, some of you seem to have a pretty good idea of what I’m made of and what fuels my drive. Now, the word-portrait will be more dimensional. If you stop by and come up with comments or suggestions, drop me a line or two. Just don’t cuss me out or I’ll sic my cats on you and they‘ll lick, tickle and talk you to death in three languages.

Lupus Foundation of America - On Our Side

2007-03-11T00:29:00.000-08:00

The next Live Lupus Chats at the Lupus Foundation of America (LFA) will be "Kidney Involement in Lupus" on Wed. March 21st and "Diet and Nutrition for People with Lupus" on Wed. April 11th.

There is also an ongoing interactive poll at LFA that helps you contribute to greater understanding of lupus by answering the questions of the week. Both chats and poll are linked on the LFA's home page so check in often to learn more about lupus and to help others' to do the same.

The LFA has so much to offer us. A non-profit organization, it uses contributions to support clinical research, help provide education and support for lupies like us, to raise public and governmental awareness and to work for legislation that will help define and strengthen our patient rights while speeding effective research.

Get to know the LFA - they're volunteers, working hard on our side and they can use our support as much as we need theirs.

LFA Responds to Dr. Phil's Comments about Lupus

2007-03-07T22:32:00.000-08:00

March 6, 2007

The Lupus Foundation of America is concerned about and wants to correct misinformation given by "Dr. Phil" on his USA television show on March 5th. This is an important article so I hope you'll read it. Please remember, even well-known 'experts' aren't always expert in all their opinions. I remember this TV personality in his first Oprah appearances telling women they were "fat" and it was their "own fault". I saw some of those women break down and cry in humiliation - so far, humiliation and public shaming have not proven to be weight-loss solutions and it doesn't take a PhD to figure that out. Even then, clinical obesity research proved there are many factors affecting people's weight, most of them having little or nothing to do with "fault". Dr. Phil is a television personality not a medically specific lupus or obesity doctor and sometimes speaks outside his area of education and expertise. For factual obesity or lupus information - or any medical condition - please seek out the real experts and act in your own best interests.

Alliance for Lupus Research Videos

2007-02-23T18:33:00.000-08:00

Drop in to the Alliance for Lupus Research
(ALR) to view the Faces of Lupus and the Walk to Cure Lupus videos. The links only allow you to download and watch the videos from your desktop.

Our Debt to a Great Scientist

2007-01-20T01:24:00.000-08:00

Inflammatory pain in lupus and like diseases can drain our inner resources and speed the progression of our illness. Just imagine what life must have been like for folks like us before the development of cortisone. Without cortisone, a host of medications would be missing from our lives. Before cortisone, many of us lived much more painful and shorter lives, with more severe disability from deforming and debilitating disease effects.

Some of us must also cope with vision defects, such as glaucoma. In this, a drug named physostigmine has made the difference between darkness and light, smeary blur and sharp sight, for so many.

With all our struggles, coping with excruciating pain, with swollen, twisted joints and losing our sight at the same time can be devastating. Our job security, safety and survival all at risk and nothing to do but do our very best just to keep going. No medication works equally well for everyone but without these drugs, there’d be no chance of an equalizer at all, no protection for any of us.

Think of the beggars depicted in antique stories and pictures, hands and feet wrapped in rags to cushion against the cold and pain, cast out from employment because of their infirmities. People just like us struggled to eat, maintain any kind of shelter and simply survive, in the days before the medications that have changed and even saved so many lives since then.

We owe a huge debt to research scientist Percy L. Julian, who pursued a career in human service against incredible odds, labored long frustrating hours in research labs and developed these powerful medications for our benefit.

February 6th, 2007, Mr. Julian will be honored as one of the most important scientists of the 20th century. PBS television’s “Nova” science series will run “Forgotten Genius,” a documentary on the life of this high achiever and dedicated humanitarian. His accomplishments and concern for others without prejudice or reservation may be even more remarkable considering his great-grandmother bore deep scars from beatings inflicted during her days as human property, before America’s Civil War.

In America, February is Black History Month, when we formally honor the accomplishments and contributions of citizens whose ancestors came up from Africa. If we can remember Percy L. Julian when we ease our pain or see our loved ones faces, and then visualize his potential in those around us, we might be making a considerable contribution of our own.

NOVA “Forgotten Genius”

Tuesday, February 6, 2007, 8:00-10:00 p.m. ET

Welcoming Lupus Romania

2007-01-20T02:02:00.001-08:00

Dear friends and readers,

As difficult and challenging as our lives with lupus can be, our experiences can also be educational, encouraging and mind/spirit expanding, when we stretch ourselves to exceed our limitations and surpass our expectations. One of the very best inspirations for personal growth in lupies like Chris, me and all of us is getting to know other lupies. I get so zinged by the sincerity, hope and determination in those I meet that it elevates me above my own pain and I leap to meet them in mid-air, reaching out beyond what life seems to be, to what life can become.

I’m so happy to introduce you to our new sister site here at Lupus NewsLog, the ground-breaking and incomparable Lupus Romania
.
The long history of Romania has been romantically colorful and politically complicated and, perhaps because of it, Romanians are very strong, passionate and resilient people. With the new year, Romania has joined the European Union, a move which can be politically and socially energizing for all member countries. This could be a great opportunity for scientific and medical research and our new friends Patricia and Stefan are right at the pivot point, surging forward to serve all those Romanians who are living with lupus.

Patricia and Stefan have not only created the research based website, Lupus Romania but are in the process of establishing the Lupus Foundation in Romania. They are remarkable people with impressive drive and determination and it is my great pleasure to introduce them to you. Although their site is naturally published in their native language, I’m sure you’ll get a profound sense of their dedication, effort and high ideals, just as Chris and I have.

As our new sister site, Lupus Romania will be publishing our articles, translated by Patricia, sharing our research and our links. Lupus NewsLog will be publishing updates on news from Lupus Romania. This is one of the beauties of digging up clinical research, clarifying it from medical-speak into everyday terminology and carrying it forward for the benefit of us all; we all share the weight, responsibility and benefit as we pass it along.

Chris and I feel so honored and delighted that our work will help men, women and children in Romania to understand and cope with their own lupus. Yet, it isn’t only Patricia, Stefan and lupies in Romania who benefit from this new relationship - we are all enriched and enlightened by sharing and we all grow from such bonds. We really are all members of the same human family and what graces the life of one, enhances the life of another. In the words of Luciano de Cresenzo (and my signature quote for many years), "We are, each of us, angels with one wing and we can only fly by embracing one another." Together, we may even soar beyond the reach of the wolf.

Please visit our Lupus NewsLog Thrivers page and read "Learn To Live Again" (Invata Sa Traiesti Din Nou), Patricia’s story in her own words. In her graceful self-expression, you will touch and be charmed by the soul of Lupus Romania.

In Tribute to True Soulmates

2005-07-10T23:05:00.000-07:00

For our Lupus NewsLog Thrivers, my beloved friend Sharon wrote so touchingly of her faith, her lupus, her loyal husband George and his own struggles for survival. Sharon’s SLE has been extremely fierce and George has had severe heart related problems with repeated surgeries. Through all the pain and anxiety they’ve endured, their faith in God and in each other, purified by fire, has grown stronger, deeper and richer in wisdom. Their marriage has been a true meeting of minds and blending of spirits, with compassion flowing like a stream between them and pouring like a waterfall onto their family and friends.

On July 7th, 2005, after twenty-two years together, George flew free of his pain, because his body, made so fragile by his suffering, could no longer shelter his buoyant spirit. As they have always done for each other, Sharon quietly, gently, tended his needs, this time, through his last good-bye. My heart breaks for them both but I know they are only parted by time and not by spirit.

Sharon and George are two of the most exceptional people I’ve ever known and my life, like all the lives they’ve touched, is enriched and strengthened by their kindness. Nowdays, we often speak of ‘soulmates’ but Sharon and George have exemplified their marriage vows with a rare devotion to each other. Some people become teachers or mentors by profession, some through character and conscience. I am grateful to Sharon and George, for all I’ve learned by loving them and I am thankful to be their true friend.

Season Of The Switch

2004-07-11T16:32:00.000-07:00

I deeply appreciate the input of our readers, the support of our hardworking compatriots and our impressive technical assistance. Still, I’m your lupie scribe so the bulk of the newslog’s and ezine’s medical research, writing and site maintenance is my responsibility.

This year, along with setting up and refining our LNL pages, I’ve also been restructuring my offline life. I’ve been moving to a new town, in a new state of mind, while coping with a ferocious lupus flare and a cantankerous computer. Lately. I’ve been as frazzled as a cat with a litter of nine two-headed kittens.

Jillian, our ally at(the once famed but now defunct Everyday Warriors - please read Jillian Leslie - Immortal Warrior) and publisher of our Butterfly NewsBytes (BNB) ezine is seriously ill right now and may also be moving soon. Must be the season of the switch, since our fellow Thriver Julie, webmaster of The Lupie Bin, recently relocated. Her move riled her wolf, too. Right now, BNB is a mighty rocky row to hoe, with Jillian and me caught between my wolf and her hard place.

To ease the load on Jillian’s generous shoulders and balance the burden on mine, we’re suspending publication of new Butterfly NewsBytes issues for now. You can follow our BNB links, to read this year’s past issues and you’ll find related bits here at Lupus NewsLog. Thank you muchly for your patience and your support.

Reaching Through the Wreckage

2005-09-12T20:38:00.000-07:00

Hurricane Katrina has caused perhaps the greatest sudden loss of life worldwide since the recent tsunami. It's so hard to believe that such horrible things could happen again - Katrina is the worst disaster on American soil since September 11, 2001 and the largest displacement of Americans since the Dust Bowl migrations in the 1930’s. We are all struggling to cope with the shock and anguish, trying to make sense of this trauma. And we are not alone in our shock and grief, in America, in Indonesia, anywhere in the wake of the ocean's wrath.

In the USA, Florida, Alabama, Louisiana and the Mississippi Gulf Coast have been battered and shattered by nature running wild. Along the coastline, thousands of homes have been flattened by the winds or swallowed up by the sea. Entire towns are reduced to rubble and sewage. Some of these towns may be reclaimed and rebuilt but many will sink into the marshlands and the memories of those who’ve lost so very much. Katrina and the tsunami are kin as close as we all are, in the horror and the agony of their ravage and waste.

Now, hurricane Ophelia seems to be biding its time offshore, as if debating whether to strike or settle down. (Update: Ophelia is now heading for the Carolinas, aiming at North Carolina’s south coast and South Carolina’s north coast. Residents are evacuating.)

New Orleans, Louisiana is celebrated world-wide as the birthplace of the blues and jazz music. It is renowned for its cuisine, architecture, friendly folks and culture. This unique city has always attracted visitors from around the world. Now, it's almost wiped off the map and all the lives lost will probably never be accurately counted. With Katrina, the tsunami and as with the twin towers in New York, the victims of these tragedies are international.

One of the kindest, most courageous people I've ever known is Sharon Sanders, a warm and wise Lupus NewsLog Thrivers contributor and LWLupus co-moderator. As I’ve written in A Tribute to True Soulmates her husband George died recently, at home with her, in Louisiana. We’re very grateful that Sharon is not among those lost or in the wreckage.

Our friend Kris Kutz is also a contributor to Lupus NewsLog Thrivers and one of the brightest lights in Alabama. We are fortunate that she and other friends who may have been in harm's way are safe. Linda, our long and loyal ally, publisher of The Lupus Chronicle lives in Florida and I hope to hear from her soon.

Sheila Wilder one of the architects of LNL, lives in Texas and I pray she is safe and well. Our friend and fellow LWLupus member Shine Rivai, her husband Yoel and their baby boy Mika (born on the fourth of July) live in Indonesia. I am little Mika’s true though honorary aunt and it worries my heart that I haven't heard from them since the tsunami.

Our challenge in any catastrophe is not to assign blame – that’s always easy and ain't it a shame – but to accept responsibility for what must be done and do our part. In the 20th century, Mahatma (“Great Soul”) Mohandas Gandhi said, “The difference between what we do and what we are capable of doing would suffice to solve many of the world’s problems.” In this 21st century, mothers, fathers and their children still die not just during but in the aftermath of hurricanes, floods, famines, fires, tornados, earthquakes and wars. On this planet of plenty, millions of children slowly starve to death every year, day by day. Can we even imagine what that must feel like - how it is to be abandoned by the world?

For all our techology, life still comes down to individuals reaching out to help others, one person recognizing and connecting to the precious life of another. By ourselves alone, we cannot save the entire world but those of us who care enough to try can comfort, change and even save lives.

In the opinion of philosopher/writer Luciano de Crescenzo, "We are, each of us, angels with one wing and we can only fly by embracing one another." According to all major religions, God, and the highest nature of humanity, is love. Our ability to recognize, feel and return such love can unify us and help us all to heal.

LNL's Articles With Attitude

2005-10-14T19:03:00.000-07:00

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.

Support Breast Cancer Prevention All Year

2005-10-05T01:08:00.000-07:00

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.

Reconstruction Blues-Pain Relief on Tap

2005-10-09T19:38:00.000-07:00

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

Jillian Leslie - Immortal Warrior

2007-01-20T01:41:00.000-08:00

Those of you who’ve been with us since at least 2001 have read articles about and by our dear friend and mentor Jillian Leslie. Jillian’s website, Everyday Warriors, was one of the most informative, professional and heartwarming medical sites most of us will ever encounter. Truly one of a kind, Jillian confronted her own devastating illness by offering support and solutions to others. With her long background as a respected author and editor, Jillian sought out and published writers she believed in, giving them an audience of well over 250,000 regular readers. Friends of Lupus NewsLog including Rose Harris, Royce Sharp and me, were regular columnists or frequent contributors to Everyday Warriors. At Lupus NewsLog Thrivers, we honor and carry on that intimacy of true life, hard won and shared with hearts wide open.

When our Butterfly NewsBytes home site froze due to too many (4500+) members joining too soon, Jillian published our newsletter issues at Everyday Warriors. My short stories of life as a country mouse and a bay city kitty won her praise. The books she cradled for me like their own godmother are making progress, one on lupie life, with the recent discovery of once lost member contributions and another book with a darkly mysterious but true to life premise. She constantly urged me to write weblogs too, not just Lupus NewsLog but more personally and far more opinionated. She respected my backstage personality but never stopped shining a spotlight in my direction. That site she wanted so much for me to create will be online soon, largely due to her faithful encouragement.

Jillian and I were so close and so reflective of each other’s personalities that we exchanged countless emails and she sent me frequent effervescent voicemails which I treasure now as a vital inheritance. Those of us with incurable disease often live with internal time bombs, silently ticking, reminding us to savor every moment and every experience, teaching us to turn tragedy inside out, to offer others the acceptance we all deserve and shape our lives with creative expression.

With Jillian’s sharp intelligence, fluent artistry and surpassing compassion, she didn’t just help lift us up the ladder of life, she built it for us rung by rung in Everyday Warriors. Eventually her own pain and struggle became to much for her, making the heavy duty of a first-class, hugely popular website too exhausting to continue. Although she carried the copyright, owned the domain and never sought to earn a cent from it, an imposter has taken the name and is using it to make a buck off one of the finest, purest non-profits the world-wide web will ever weave.

Because Everyday Warrior’s name is being ill-used in this way, I’m removing every link to this famous site. Please ignore them in their last days at LNL. I won’t shill for any shyster and I won’t help anyone to cheapen Jillian’s considerable contributions. Jillian brought energy, humor and enthusiasm to everything she did and she will always be vibrantly alive in the memories of those she’s shared so much with and done so much for. Ti amo, dear sister, you are truly an Immortal Warrior!

Illuminating Links

2005-10-23T22:49:00.000-07:00

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.

Lupus Awareness Month

2005-10-06T00:53:00.000-07:00

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.

Latest Links

2005-10-07T20:08:00.000-07:00

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 risk

Dubious Antibiotic Cancer Link

Women 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

Life Saving Links

2005-09-12T20:03:00.000-07:00

New Orleans, Louisiana A fascinating history. (Wikipedia)

Faith in the Eye of the Storm"

The Deluge Survivors and religious leaders comment on Katrina.
Katrina: Not God's Wrath--or His Will By Dr. Tony Campolo Oordained minister and author of 28 books, including 'Following Jesus Without Embarrassing God.'
Deep Waters: A Spiritual Response to Hurricane Katrina Wisdom and comfort from Billy Graham to Lama Surya Das.
Hope and Faith After the Storm A daily blog chronicling inspiring and brave stories of survival, hope, and faith in the wake of Hurricane Katrina.
Katrina Thanks Blog "A Public Forum to Express Thanks to Individuals, Organizations and Countries that Have Assisted with Katrina Relief Efforts"

Click for Free to Create Donations:

Click to End Hunger "For each click, Dannon will contribute $1. to America's Second Harvest (up to a total of $75,000). Every $1 donated helps America’s Second Harvest provide 15 meals to children in need."
The Hunger Site Corporate sponsers act on your clicks to feed children in the aftermath of the tsunami and hurricane Katrina.
The Animal Rescue Site Dedicated to rescuing and sheltering animals in need.

Send money, goods and/or volunteer your services:

Mercy Corps “92 cents of every dollar” is applied to good works.
The Humane Society of the United States' (HSUS) Disaster Relief Fund “Helping animals and their caregivers” after Katrina.
USA Freedom Corps represented by former presidents George H. W. Bush and Bill Clinton solicts cash, goods and services to help disaster victims.
Manilow Fund for Health and Hope “… You donate $1.00… Barry will match your $1.00… and the Manilow Fund will match another $1.00…. so your one dollar becomes $3.00.”
ASPCA – American Society for the Prevention of Cruelty to Animals “to help the animal victims of Hurricane Katrina.”
Best Friends Animal Society “A better world through kindness to animals.”

Check Out Charities:

Network for Good “an e-philanthropy site where individuals can donate, volunteer and get involved with the issues they care about."
Charity Navigator and Guidestar rate charities for effectiveness.

The ABCs of IBS

2005-05-01T23:26:00.000-07:00

Irritable bowel syndrome (IBS) is often either the topic of bad jokes (groaners in more ways than one) or too embarrassing to discuss at all. If we have SLE, we're likely to have IBS too so we need straightfoward information to ease our toxic tummies and debilitating digestive systems.

Sophie Lee publishes a very informative website, IBS Tales, writes a very personal IBS weblog and has written an interesting ebook, IBS and Me: Living with Irritable Bowel Syndrome, which costs only $9.99.

Imagine that - a usful ebook, for a reasonable price. She isn't trying to stick us up for our gas tank funds or chow down on our lunch money. Basically, it'a a trade up from a large latte. It's just a simple negotiation - she gets $9.95 = you get a pretty good read. Sophie invites you to visit her sites, to share your IBS experiences and those of others. She’s put together a triple-hitter there that packs a mighty wallop and, with all she has to offer, you're bound to learn something new and useful.