Welcoming Lupus Romania
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.
Jillian Leslie - Immortal Warrior
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!
Our Debt to a Great Scientist
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
©Shar Phoenix, Lupus NewsLog.
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