I’ve Done That Already!

It has been said by both critics and newpaper columists that America's Queen of Opera, Beverly Sills, who enjoyed success in the 60’s and 70’s, could “light up the stage!” She was an ambitious star with the gift of self-mockery and a soprano voice of sparkle, charm and brilliance. She retired while her voice was still in top performance quality on October 27, 1980. On that auspicious occasion her husband, Peter Greenough, gave her a ring with the inscription, “I’ve done that already!” It was a sentiment meant to pay tribute to the opera star and a statement about moving forward in life, not living in the past.

Sometimes people ask me if I could go back in time, would I want to? As far as I’m concerned Beverly Sills said it all! “I’ve done that already!” Oh, I’d love to have the young, energetic body that could work endlessly and leap two stairs at a time, but I wouldn’t want to give up all the knowledge I’ve gained, lessons learned, or the relationships acquired. I have enjoyed all the different stages of each chapter of my life, but when all is said and done, I want to keep moving forward, experiencing new things. I don’t want to go back and live it all again.

In April of 2004, nine years after becoming ill, I had a memorable dream. In the dream I was talking with a woman who’d had many trials. I woke up with her words ringing through my head, “It is through our trials that we discover who we are!” For me that knowledge has become a treasured gift.

As I began my still unidentified Lyme journey in 1995, I searched for answers, becoming susceptible to any, and all possible cures. The initial medical help I’d sought (blog post, “No Man is an Island”) resulted in unnecessary foot surgery that failed to cure me. My blood tests showed no infection whatsoever, anywhere in my body! To the naked eye I appeared healthy. Several professionals suggested that I might consider psychiatry, implying that my pain, though real to me, was perhaps psychological and a desperate need for attention to get out of my household and motherhood duties. I seriously began to wonder if I WAS crazy! Perhaps I had some deep seeded emotional trauma I was unaware of. However, inside I was in terrible pain, so exhausted I could barely function.

Towards the end of my mysterious summer of painful frustration, I woke up one morning unable to move my right arm without intense pain. I was also having difficulty breathing, feeling like there was a huge file cabinet sitting on my chest. My husband began calling the list of various types of alternative doctors I had been seeing after my medical attempt failed to help. It was a Saturday and their offices were closed. Finally we reached a new chiropractor in town that had dropped by his office to fix his air-conditioner. Although his office was closed he allowed my husband and I to come in. He greeted us cheerfully and after his initial examination he convinced me that I had a pinched nerve. In my painful desperation, I eagerly accepted his diagnosis and proposed treatment. I began triweekly sessions of physical therapy, liberally dousing myself in anti-inflammatory creams and lotions.

Oddly, I’d been experiencing strange, seemingly unrelated symptoms for over five months and no one had ever prescribed an antibiotic, as my blood tests could not verify any type of actual infection. (It is imperative that the correct antibiotic be given within three days to three weeks of any suspected Lyme disease symptoms.) I was completely naive of all things medical. I had rarely even taken an aspirin prior to that summer! My list of mysterious symptoms began to grow. I had aches and pains that moved around my body, and a sore throat that burned like fire. My feet burned, making it difficult to stand still without walking. My hands burned periodically too, as if caught in a hot flame. My glands were swollen and my knees began to swell, making it difficult for me to get off furniture without rocking back and forth, catapulting my way upward, hoping I wouldn’t loose my balance and fall. My jaws, also in pain, suddenly didn’t fit together, making it impossible to eat. I began losing weight rapidly. However, I had no exhilaration over my new emerging skinny figure. I was too sick to shop for new clothes and enjoy it.

As my strange symptoms continued and the prescribed pain pills and anti-inflammatory pills no longer helped my intense pain, I sought new medical advice. A new physician finally diagnosed me with what he suspected was rheumatoid arthritis, although my “Sed Rate” (a word new to me), was four times higher than anyone he’d ever treated. I had an aunt with rheumatoid arthritis, so surely I had inherited it. Never mind that it took my Aunt Maurine 40 years to become as crippled in pain as I was becoming in a few short months! [Since then I have discovered that Lyme disease can awaken formerly dormant conditions in the body, which is why the disease mimics so many other diseases and becomes difficult to diagnose and treat.] Long story short, the new treatment failed to eliminate my pain as promised. My pain and mysterious burning symptoms stubbornly persisted.

Finally, on the advice of an another aunt, in December of 1995 (a week before Christmas), we traveled to a clinic in Nevada to seek unconventional medical treatment from a medical doctor practicing there. For the first time since my peculiar symptoms appeared, someone finally listened to me for more than a 15 minute office visit, recording and writing detailed notes about everywhere I’d been and everything I’d done in the last year. I remember that the weather was warm and sunny on that Nevada day, yet I felt dark and gloomy inside. My energy was so low, that as I looked outside the clinic’s window at the birds sitting in the trees, I presumed they were all dead. I wondered why they didn’t fall from their perched positions.

I spent three days coming and going to the clinic, being poked and prodded, tested and retested. I was the last patient to leave before the holidays. Finally, I was clinically diagnosed with Lyme disease, having 49 out of the top 50 symptoms! My husband and I cried when we finally had confirmation that there was something actually wrong, not imagined or faked. The doctor ordered additional diagnostic tests, but all I knew was that I had a diagnosis and I could get better! Little did I realize that my journey had only begun.

I returned home to Utah with a box full of homeopathic medicine, still feeling like I needed a doctor who would give me “real” medicine, yet following the new prescribed program, certain I’d be able to find a specialist that believed in and treated Lyme disease. Surely I’d be back to driving carpools in a few weeks!

A week later I found myself arguing with an “Ask a Nurse” hotline as I sought a Lyme disease specialist in Utah. “We don’t have Lyme disease in Utah,” I was told. “Well, I live in Utah and I have Lyme disease. I need a doctor,” I said. Once again she repeated, “We don’t have Lyme disease in Utah, and if you’ve really got it you didn’t get it here!”

At the time I was unaware where I had picked it up as I had also been to girl’s camp in the mountains that summer and our Bear Lake cabin as well. Never-mind that we are an international traveling people, we apparently didn’t have Lyme disease in Utah! I began to doubt my diagnosis and the expensive treatment I’d received. I mistrusted the kind doctor who’d tried to help me. Maybe I WAS crazy and in denial of what really was just arthritis. To top off my fear and confusion, my Lyme test came back negative.

Since that warm Nevada day in December I have traveled near and far seeking medical advice and a miracle doctor that would not only believe in the possibility of my Lyme disease, but additionally have the knowledge and skills needed to treat it. I began chasing symptoms. Each doctor had a specialty linked to something I was experiencing, each with a hopeful cure. After traveling not only to Nevada but also to a Chinese Lyme specialist in California and to a renowned German Lyme doctor in Seattle, I finally got an actual “positive” test for Lyme disease, seven years later. The doctor referred to it as a “gooey” case, with multiple pathogens.

Today I am fairly crippled physically, but my immune system seems to be improving. I can breathe freely and have my singing voice back, although my high soprano voice is still missing. My journey has helped me realize there is no “one” magical cure or treatment for Lyme disease, as there are for some other diseases. Everyone responds differently according to their body’s design. For me I have come to have an open mind, which has ultimately become one of life’s great gifs. I gobble up knowledge, new ideas and innovative thinking, knowing there is advanced knowledge, experiences, and cutting-edge ideas to be discovered. Gratefully, I have a husband who is open-mined, supportive, and willingly takes over our formerly shared household responsibilities.

I can’t go back to where I was before. I needed that pain, my own little “ring of burning fire,” to get where I am today. Like Beverly Sills ring said, “I’ve done that already!”

NOTE: Lyme Disease is a clinical diagnosis. The disease is caused by a spiral-shaped bacteria (spirochete) also known as Borrelia burgorferi. The spiral shape to the bacteria enables the Lyme disease to burrow into your body and attack any organ it wishes. The bacteria also has a cloaking device, a little like Star Wars, which allows the bacteria to get into your cells and disguise itself as healthy cells, attacking further. (www.lymewalk.org)



To Prevent Lyme Disease (avoid ticks): 


1. Avoid areas with lots of ticks. Ticks like wooded, bushy areas with high grass and lots of leaf litter.


2. Use insect repellent with 20%-30% DEET on adult skin and clothing to prevent tick bites.


3. Wear long pants, long sleeves, and long socks to keep ticks off your skin.


4. Check your skin and clothes for ticks every day. Remove ticks before going indoors.


5. In areas where ticks are found, walk in the center of trails to avoid contact with overgrown grass, brush, and leaf litter.


6. Since deer can carry ticks that transmit Lyme disease, discourage deer from entering your yard.


7. Take extra precautions in May, June, and July, when ticks that transmit Lyme disease are most active.


8. If you find a tick on you, remove by swabbing with high grade therapeutic peppermint essential oil. Save the tick in a container in case you develop flu-like symptoms, mysterious aches and pains or sudden extreme exhaustion. Ticks can be tested easier than human beings for Lyme.


* Learn more and become informed by checking out the movie in select theaters now called, “Under Our Skin.” www.underourskin.com