Lyme Disease

Dear Readers,

I have advanced neurological Lyme disease.  It effects the way I think, move, write, read, eat, and every aspect of my life.

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 becoming 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 a brain tumor, perhaps 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 does -- lead to falling down.  

At times I was so deeply fatigued while writing Ya-Yas in Bloom  that I could not lift my hands. 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 Ya-Yas in Bloom 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.

Like any act of creation, whether baking a pie or chopping wood, creativity 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.

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. B, 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.

I immediately went online to learn more at www.LymeDiseaseAssociation.org. Lyme Disease is the most widespread disease that is carried by ticks and other insects in the United States. It is crucial that all of us, especially doctors, become educated about its symptoms, diagnosis, and treatment. Particularly in its advanced stage, Lyme Disease can be very difficult to diagnose.  

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, Lyme disease has been reported in every state except Montana.

It is crucial to be aware and be informed. The CDC estimates the actual numbers of those infected each year is at least tenfold of what is documented as cases. Some Lyme specialists believe the numbers are even much higher than that.  If you could only see little children suffering from misdiagnosed Lyme, if you could hear the pleas of their mothers for treatment, you would know that Lyme disease is indeed an insidious ticking epidemic that must be dealt with.

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.

On the day Hurricane Katrina devastated my homeland, my sweet husband was also diagnosed with Lyme disease. Because our co-infections are different, our doctor presumes that we were bit by different insects. Watching him suffer and not having the energy to help is heartbreaking.

Just after Christmas, one of my dearest girlfriends was diagnosed with Lyme.  How I had hoped that I would be the only one to get Lyme!  That somehow my being infected might protect those I love.  I even made a sort of unconscious bargain with the Universe: let ME be the one with this disease; I'll muddle through--but DON'T give it to my dear ones.  But that's not how it works. The Divine has plans that we cannot discern.  Only faith gets you through.

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. Over the past year, I have 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. Because babesiosis is quite similar to Lyme, I also take anti-malarial medication. I have just begun injections of antibiotics, and for the first time in my life, I actually wish I had a bigger toosh!  Never thought I'd say that.

I am aware that my late diagnosis means I am in this for the long haul, perhaps even for life.

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. As a patient, I am now part of a club of people with a stigmatized disease that many doctors refuse to touch.  While I am lucky enough to have a doctor who is willing to provide open-ended treatment -and I have the means to pay for it- many of my fellow Lyme patients have gone without appropriate care. As a consequence, they have lost their health, their jobs, their homes, their marriages, and even their lives.  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?

In the past year, my mental clarity has improved, along with my problems with air hunger.  I am no longer on supplemental oxygen.  I still have seizure events, and have trouble walking at times.  My light sensitivity is so high that I must wear sunglasses at all times, and when outdoors in sunlight, I must be blind-folded.  

Yet I am blessed to walk into my writing room on my own, sit down, and work on the next Ya-Ya novel.  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 so I can type. My spirit is willing, but my flesh is weak.

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.  I try to use the "50% rule," which means to never use more than 50% of my available energy before I rest.  This is the only way that the energy needed for healing can take place.

In terms of a prognosis, there is every good reason to believe that in time, with continued treatment, I will get much better. I take hope from colleagues and friends like Amy Tan and Jordan Fischer-Smith, who have been in treatment longer than I, and who have generously given me support and counsel.  I also participate with a wider Lyme community online where I find information and solace.  Complete strangers who I would have never met have become close friends because we share this disease. I am so lucky to have a girlfriend here on the island, darling Mei-Mei, with whom I share a similar diagnosis.  Our frequent conversations and visits are a touchstone for me. Without my new Lyme friends, I would be one lonely Ya-Ya.  

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.

This April, the trade paperback of Ya-Yas in Bloom comes out.  While I would love to dress up and priss across the stage, embodying the characters of the Ya-Ya universe, I will have to be patient with my body and ask it daily what it can 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. If you are bitten by a tick and suspect you have been infected, go see a Lyme-literate physician. Get treated early and adequately. Don't wait, as I did, and let a treatable disease turn into a chronic one. For more information on Lyme Disease, a Lyme-literate physician, or LymeAid4Kids, see: www.LymeDiseaseAssociation.org.

For information on research on Lyme Disease, see www.ilads.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!

I have consulted with the Ya-Yas (yes, I do these kinds of things), and they have proclaimed that my new nickname is "Lymetta."  Furthermore, the Ya-Yas proclaim that girls and women who suffer from Lyme are "Lymettes." Further, the Ya-Yas believe that boys and men with Lyme should be called "Lymesters."

Vivi says that "Lymester" sounds like "gangster," and that to fight these darn Lyme bugs, one has to get tough.

I must also tell you that since humor is one of the most important of the divine secrets of the Ya-Ya Sisterhood, they have suggested that my sweet husband develop his lounge act in which he sings in a totally sleazoid voice several tunes to frighten off Lyme bugs (if not the listeners as well.)  Between his singing, his "lyme" colored leisure suit, and Lymetta's jokes, we shall not only survive, but prevail.  We're just waiting for the next national Lyme
conference to perform!

Take sweet care.  Keep laughing, no matter how dark things may seem, and count your blessings one by one by one.

Many prayers and all good wishes,


Rebecca Wells

Rebecca Wells is not a doctor or medical professional. The information provided in anywhere on this site should not be used during any medical emergency or for the diagnosis or treatment of any medical condition. A licensed physician should be consulted for diagnosis and treatment of any and all medical conditions. Call 911 for all medical emergencies. Rebecca Wells makes no representation or warranty regarding the accuracy, reliability, completeness, currentness, or timeliness of the content, text or graphics. Links to other sites are provided for information only -- they do not constitute endorsements of those other sites or any physician, product, or service they may recommend. 

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