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Just recently noticed a free newspaper at Books A- Million (NOVEMBER -BOOK PAGE-2005) had a Question Ans. section on first page and Rebecca Wells ans. a question about how she is now being treated for LYME and she mentions going to a great LLMD and lists LYMEDISEASEASSOCIATION.ORG for those wanting to learn more about LYME. Just passing this along. Every little article helps us all I am sure.
Posts: 560 | From PA | Registered: Apr 2001
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Here's the article from her website. Great to know she's getting the word out!
A Personal Letter About Lyme Disease Dear Ya-Ya Community,
From my quiet home on an island near Seattle, I'm writing to share my joy with you at the publication of Ya-Yas in Bloom. Thank you for helping welcome my new novel into the world! At the same time that the buds on the cherry trees that grace the woods near my home are opening, this new book is blossoming.
Spring! A new book, a new beginning!
I'm also writing to give a special welcome to those of you visiting ya-ya.com for the first time. This is a place where you can find friends, support, humor, and inspiration. Not to mention plenty of Ya-Ya fun. For those of you who have been part of this online sisterhood for some time, I send you my warm affection.
I'm thrilled to have a new novel out. As attention turns my way, I ask myself the questions: "What are the life blessings right now?" and "How can I be of service?" I listen to Bob Dylan singing "Gotta Serve Somebody" over and over these days. I want to do what I can to serve others who are suffering. I have a spotlight turned on me right now. It's my job to direct that light where it's most needed.
I think of Ya-Yas in Bloom as a miracle baby. I'd like to tell you why.
During the same time in 1998-99 that my novels, Divine Secrets of the Ya-Ya Sisterhood and Little Altars Everywhere introduced the Ya-Yas to millions of readers, and the hot white light of success hit me as a #1 New York Times best-selling author, I was getting very sick and did not know it.
At first I thought I just had a recurring case of bronchitis. I didn't foresee the difficult journey that lay ahead of me.
Things went from one weird symptom to the next, then a whole cocktail of symptoms just to keep things jumping. Right when I thought it couldn't get worse, it did. Again and again. I stopped saying "Things can't get any worse than this." Those who have suffered know it CAN get worse.
Years went by in which I did not know what was wrong with me. I was told maybe I had epilepsy, maybe I had dystonia, maybe if I only took the latest miracle anti-depressant that all my symptoms would magically disappear. (Pause very carefully if ANYone tells you that.)
In the last seven years, my symptoms have included severe respiratory infections, intense muscular skeletal pain, severe fatigue, Multi-Chemical Sensitivity (MCS), hunger for air, extreme sensitivity to light and sound, seizure-like events, and freezing hands and feet (probably due to peripheral neuropathy). Weakness in my lower limbs has been one of the most physically dangerous symptoms because it can -- and has -- led to falling down.
At times I was so deeply fatigued while writing this book that I could not lift my hands. When I was very ill, I lay in my bed and talked my book into a tape recorder, which was later transcribed. There were many times when I had to use a wheelchair to get to the door of my writing room, then be lifted by my husband into my writing chair because the door was not wide enough for the wheelchair to get through.
To finish this book I had to accept the situation I was in and find ways to work that respected my limitations. I realized that I was being given small packets of energy to be used wisely. Once I accepted this I was able to complete the book.
Ya-Yas in Bloom is for me a victory of the imagination over my illness and fear. The delivery was painful, but grew less so when I began to humble myself to the power of writing to help me keep going. When I was in the bleakest of times, before I was diagnosed or treated, writing this book kept me going. I love these characters, and their stories helped heal me. Writing can save.
Like any act of creation, whether baking a pie or chopping wood, it can dispel the dark. Ya-Yas in Bloom, if I really let it, reminds me that miracles are possible for me, right here, right now.
I was so sick for so long -- and did not know why -- that I grew ashamed of my illness. This meant that my own sisterhood and brotherhood was left uncultivated. I lost a sense of community. With the exception of my sweet, steadfast husband and a few dear friends (most of whom live far away), I became painfully isolated.
The incredible ya-ya.com community has supported one another through both health and sickness. You Dahlin Gumbo Girls have held the hands of so many online Ya-Yas as they have dealt with a variety of health issues. I did not avail myself of that kind of community. I was afraid to let people know I was ill.
On some level, I bought into the unhealthy belief that many of us suffer from: the idea that we should have been able to control everything. That somehow, we must keep up with this increasingly fast-paced culture we live in, no matter what the expense is to our body. My illness has taught me differently.
After having seen 12 different doctors, I was not correctly diagnosed until my wonderful environmental health doctor, Dr. David Buscher, who treated me for chemical sensitivity (MCS), thought to test me for Lyme Disease. I received the results of the lab tests on Election Day, 2004. I tested positive. Now that was a day for news. Whew, boy.
Lyme Disease is the most widespread disease that is carried by ticks or insects in the United States. It is crucial that all of us, especially more doctors, become educated about its symptoms, diagnosis, and treatment. People are suffering, and sometimes dying, unnecessarily. This cannot stand.
It is especially important that primary care doctors become Lyme- literate so that this disease can be caught in its early stages. While Lyme is better known on the East Coast, it exists in many areas of the country, and awareness is sorely lacking.
I learned I had to be very careful to be sure I was treated by a Lyme-literate doctor. I was fortunate to become a patient of a doctor very experienced in the treatment of Lyme Disease.
Now that I've been diagnosed, I have begun to reach out to more people, tell them the truth about my life and ask them for support. I know more deeply than ever that friends are everything. I need support from every corner of the universe to make it through this.
I have advanced Lyme Disease. This, along with other factors dictates the course and design of my treatment. I've taken several rounds of antibiotics to try to eradicate the bacteria and will have to take more. In addition to Lyme, I also have a malaria-like infection called babesiosis which I probably got from the same tick or insect which introduced the Lyme bacteria into my body.
Anti-malarial medication and antibiotics are treating the babesiosis. My doctor has temporarily stopped treating the Lyme until the babesiosis has been dealt with. After that I'll resume Lyme disease treatment with more antibiotics.
Unfortunately, for most people, insurance covers very little of the cost of Lyme-related doctor visits and appropriate treatment. My out-of-pocket medical expenses are staggering. The cost to individuals and families for Lyme treatment can often cause serious financial strain. I am blessed beyond measure for so many reasons, one of which is being able to afford good medical care. I only wish this were true for everyone.
I'm trying to take everything one day at a time. To wake up every day and play the hand I've been dealt as best I can. I'm discovering what we all have to learn eventually: attitude, not external circumstances is what determines happiness. Happiness does not depend on having a healthy body. It has to do with taming the mind, with learning to accept each moment. Prayer, meditation, healing imagery, and kindness sustain me. The ever-constant love of my husband holds me up. He has never wavered in his love and support. The knowledge that there is a divine presence much larger than myself who loves me unconditionally and who wants my happiness sustains me.
As for success, I define it differently now. As Vicki Baum puts it: "A woman who is loved always has success."
My suffering has opened my heart more fully to the suffering of the world. When I have a malaria-like infection, how can I not feel deeper compassion for the 2 million people, mostly in Africa, who die of malaria each year?
These days I am slowly getting better. I am blessed to walk into my writing room on my own, sit down, and write. At present, because my hands are so cold, I wear gloves to type, and use a heat lamp to warm the area above the keyboard. My doctor feels very confident that once Lyme is cleared from my body, the effects of what is probably peripheral neuropathy in my hands and feet will go away.
Now, when I'm at the computer, I set a timer for 20 minutes, then get up and walk around and stretch. I don't work for 12-14 hours a day like I used to. I pace myself and try to listen to my body. The mind is not always one's best friend, period. It will try and sucker you into being a perfectionist workaholic if you're not careful. We all have to listen to our bodies; I just need to listen much more carefully than most others do. I have to not go past my body's limit -- whatever it is on a given day. I have to be extremely careful about keeping stress to a minimum.
In terms of a prognosis, there is every good reason to believe that in time, with continued treatment, my body will rid itself of Lyme and babesiosis and that I will grow much, much healthier. I take hope from my colleague and friend, the writer Amy Tan, who was once so sick with Lyme Disease she could not walk one city block. After two years of proper treatment, she's just back from trekking in Bhutan!
Writing Ya-Yas in Bloom required much emotional and physical energy from me for a very long time. The grace I received is that the stories contained in my book truly did blossom forth with their own powerful energy into my life, and that energy sustained me during the times when I was unable to work and was struggling simply to survive.
For the hardback edition of Ya-Yas in Bloom, I'm doing promotion from home. How I'll miss my bookseller friends and meeting y'all -- all my readers, those of you who've already read Little Altars Everywhere and Divine Secrets of the Ya-Ya Sisterhood, and those who are just meeting the Ya-Yas for the first time in my new book. (And yes, not touring will also make me miss dressing up and prissing across the stage to embody the characters of the Ya-Ya universe, as the actress in me does love to do!)
As those of you who visit the website regularly probably know, there is nothing I like more than blasting up some good music and dancing in my living room. Especially when the moon is full. I'm not always strong enough to do that these days. But when I can, it is more special than before, because every single movement of my dear body, which bears so much so valiantly and does its best to fight infection, is a further sign that I am loved.
I urge you all to learn more about Lyme Disease and become involved. Educate yourselves, your children, your friends and family, and ask your doctor to learn about Lyme Disease. Visit www.LymeDiseaseAssociation.org. Please do what you can do, from right where you are right now.
When we give, when we help, WE ourselves receive a gift. No matter what our circumstance, we are most blessed when we share with the world.
I like to imagine how the Ya-Yas -- Vivi, Caro, Teensy, or Necie -- would respond if one of them was diagnosed with advanced Lyme Disease, or any disease, for that matter. There would be no stopping those women. I can see them now!
Thank you all for taking the time to read this.
I deeply appreciate any prayers you might choose to send my way. If not prayers, then maybe some of Ya-Ya Necie's "pretty pink and blue thoughts." I've come to understand that the two are very closely related.
I hope your reading of Ya-Yas in Bloom will bring you what it brought me as I wrote it: laughter, tears, and some healing along the way.
84,000 Blessings . . . and
BLOOM ON!
Rebecca Wells
� 2005, by Rebecca Wells
Posts: 982 | From Florida | Registered: Feb 2002
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Ann-OH
Frequent Contributor (5K+ posts)
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This was written in March this year. I hope she is doing better by now. She is a great writer! Ann - OH
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Another article on Rebecca in the 4-10-05 edition of the Chicago Tribune (via Associated Press):
Counting Her Blessings, Fighting Her Way Back
Rebecca Wells celebrates the release of Ya-Yas in Bloom, written while she struggled with debilitating Lyme disease
Whether she is writing, meditating or gazing out her window at the salmonberry and wild cherry trees in her garden, Rebecca Wells takes time to count her blessings.
For the mega-best-selling author of Divine Secrets of the Ya-Ya Sisterhood and Little Altars Everywhere, blessings are no longer measured in fame or riches or the legions of fans who have embraced the books and their tale of enduring friendship among four saucy, sassy Louisiana ladies.
Struck with chronic illness shortly after her books began their remarkable ride up best-seller lists, Wells now finds quiet grace in living a simple life, and enjoying the fact that Ya-Yas in Bloom, her latest installment in the saga, came to be written at all.
"I think Ya-Yas in Bloom is perhaps a more tender book than my firt two," said Wells, who has declined interviews because of her health but agreed to an e-mail exchange with The Associated Press. "Illness and the love I have been gien have taught me about the need for tenderness. I know more deeply that we all need more compassion and kindness than this fast, consumer-driven world encourages."
The challenge of writing Ya-Yas in Bloom was just one part of Wells' terrifying descent into debilitating illness that began seven years ago, just as she was adjusting to the heady overnight fame wrought by her first two novels, which prompted women all over to form "Ya Ya" clubs to share books and do good works.
She began having dizzy spells which caused her to fall, and over time she became hypersensitive to sound. Then she developed respiratory infections, freezing hands and feet, and a multi-chemical sensitivity that made even the slightest whiff of perfume almost unbearable. For over a year, she was tethered to an oxygen tank in her home near Seattle for at least two hours a day.
"The terror of not knowing what was happening to me was dreadful," Wells recalled.
After numerous misdiagnoses by a dozen different practitioners, Wells was finally diagnosed with Lyme disease and babesiosis, a rare, tick-borne illness with symptoms similar to malaria. Through a regimen of anti-malarial medications and antibiotics, she is hopeful that one day her body will be restored to some approximation of normal health.
Writing Ya-Yas in Bloom helped Wells focus on something other than her illness, ut each day also sorely tested her will.
At her sickest, she was unable even to lift her hands, so she would lie in bed and dictate the book into a tape recorder. On better days, her husband, photographer Tom Schworer, would carry her to her computer, where she would work for 20 minutes at a time before stopping to rest. On her best days, she could write about four or five hours, less than half of her normal level.
In her bleakest moments, Wells said she drew inspiration from another esteemed Southern author, Flannery O'Connor, who wrote while suffering from lupus, a chronic autoimmune disease that eventually killed her.
"If ever there was a model to help me out her, it's Flannery," Wells said.
Another inspiration has been her friend and colleague, Amy Tan, the best-selling author of The Joy Luck Club and The Kitchen God's Wife, whose own prodigious writing career also was nearly destroyed by Lyme disease. Tan who suffered from the illness for four years before being diagnosed in 2003, says she didn't write a word during that time. She has since become an activities for Lyme disease awareness and a source of support for other writers suffering its ill effects.
"I got to know Rebecca in part because we both write about mothers and daughters, and the mothers tend to be intense and kind of looney," Tan said. "We talk a lot because she knows I understand Lyme disease, what it means to write and what it means to be public about it. She often says to me, 'Only another writer who has this would know.'"
In Ya-Yas in Bloom, readers are reintroduced to Vivi, Caro, Neecie and Teensy, the boozy, raucous quartet who form the heart of the sisterhood. But here Wells digs deeper into the lives of the Ya Ya offspring (better known as the Petites Ya-Yas) and further explores some oft he male characters, especially Vivi's husband, Big Shep.
Wells makes her home on an island in Puget Sound, where she lives with her husband in a hillside home with sweeping views o f the water. And as she begins work on her next Ya-Ya book, she has worked on accepting her new limitations while rejoicing in her continued gifts.
"The redheaded firecracker that I used to consider myself to be is pass�," she said. "At first, I mourned losing her. But now I'm getting used to a more mindful way of being that is more about love than about time. That redhead I used to be moved too fast anyway."
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