Who’s at Your Thanksgiving Table?

Who is eating at your Thanksgiving table this year? Neighbors? Friends? Family? Recently, I discovered there is a tropical parasite called “Blood Fluke” dining at mine. Blood Fluke is not found in the United States. It is indigenous in third world countries, such as the Caribbean, where we vacationed 16 years ago.

A “parasite” is defined as an “organism living in or on another organism (it’s host) that benefits by deriving nutrients at the host’s expense. Simply speaking, you might say a parasite “eats” from another’s table, causing varying degrees of damage or disease to it’s host. Parasites are generally much smaller and reproduce at a faster rate than their hosts. An extraordinary variety of viruses, bacteria, parasites, and organisms stand ready to attack us and feed off our bodies' cells. They can come from our water, food, animals, and even small insects. Parasites can also carry a host of other destructive pathogens with them, such as the Lyme pathogen that my Blood Fluke carried with it.

After 16 years of chasing after the complicated pathogens associated with Lyme disease, I have finally discovered who has been eating at MY table! Blood Fluke—a tropical parasite, has been hiding in my body, undetected by traditional medical tests—an organism so small and naked to the human eye that it has been able to feast and thrive heartily at my table. Blood Fluke—carrying within it’s digestive system the Lyme pathogens that have plagued my body.

Before my September post, ‘Remembering 9/11,” I had not written on my blog for over six months, due to the electrically charged pinched nerves in my neck and arms—somehow made acthive when I am working on the computer. What began as an annoyance that I controlled with essential oils for several months, suddenly spiraled out of control into an extremely painful, traumatic condition. I had been religiously following a new medical protocol over the past year that had been helping my joint pain and over-all condition, when suddenly I found myself at a healing crossroad. I tried a Lymphatic and Cranial Sacral massage therapy, as well as a Chiropractor, for what originally appeared to be tendinitis, to help relieve my “burning” shoulder, arm muscle, and elbow pain. The “electrical” cramping nerve pain would plague me for hours after sitting at my computer keyboard. My only continuous relief was to discontinue using the computer—my connection to the world, family and friends—my creative outlet. I love literature—reading, writing—manipulating the English language, like an artist painting a portrait with colorful oils. I enjoy weaving together different colors and shades of the written word.

Last February, with no other choice readily available, I had to retire from the church job I have loved for ten years—writing my ward’s weekly ward bulletin, monthly newsletter, phone directory and yearly history. My burning arm pain has been reminiscent of the sciatic nerve pain I experienced in my legs eight years ago, causing me to be bedridden. It was also comparable to the foot and arm pain that signaled the beginning of my health crisis 16 years ago. I have been told many times by medical personnel that I have a high tolerance for pain, but the “nerve pain” I have ever experienced is pain unlike I have ever known and has literally threatened to bring me to a breaking point. Medically speaking, there has never been a logical answer for these painful episodes and I have had to rely on a much higher power for inspiration when I didn’t know what to do or where to turn for help.

Life has been compared to a continuous journey with obstacles and challenges that threaten to destroy us. We are sometimes faced with life-threatening opposition and treacherous rocky roads, with dips and turns that hamper our physical and eternal progress. Like parasites, sometimes people can be parasitic to our soul, feeding off our tables, trying to diminish our God-given light—in an attempt to brighten their own lamps. They want us to feel the same unhappiness they feel. Parasitic people––sometimes called “haters” or “bullies” are usually just unhappy people, looking for joy by feeding off our tables of light.

We must watch out for parasitic people and believe them when they show us who they really are by their actions. We want to believe there is good in everyone, but like real parasites, parasitic people can block our eternal progress by taking away our “good nutrients.” Like the previously undetected parasites hidden within my body, they leave a negative environment of unhappiness in their path and it is up to us to clear their negative effects from our lives.

Sometimes parasitic people, like parasitic pathogens, can be a blessing in disguise––helping us discover “who we are” and what we are made of. Parasites may try to block our progress by taking away our good nutrients, but once we identify them we can begin to navigate around them and clear away the destructive behavior.

The fork in the road of my dining room healing crisis led me to explore an alternative path I had heard about previously in a local Lyme support meeting. Along with my regular medical appointments, I am also going to a new medical clinic trained in Chinese medicine, acupuncture, and genetic testing. I have discovered new answers—what happened to me and why I got hit so hard, so fast. I have been exposed to new ideas, new technology, and new people, who have traveled equally difficult paths of healing. In a world filled with turmoil, I am continuously amazed at the wondrous world of technology we live in, and the generous people who strive to help others and make this world a better place for everyone. I am filled with gratitude for the multitudes of God’s children who work tirelessly, serving others in His kingdom—from my dedicated doctors to my husband who has become chief cook, maid, and bottle washer, and our children who generously give their time and talents to clean our home and massage my sore muscles. We are grateful for good friends and neighbors who faithfully show up each day to help me exercise, and bless our lives with their genuine friendship and acts of love.

Slowly we have begun to unravel the complicated mysteries of my illness, causing me to realize that I have been led “line upon line, precept upon precept,” according to my faith and willingness to open my heart in acceptance. For example, even though I had been taking an abundance of supplements, we discovered I had a very specific calcium and magnesium need, correcting my cramping muscles almost immediately. I was also tested for very specific toxins and pathogens that are relative to Lyme disease when a patient’s is unable to rid themselves of the Lyme die-off. Through genetic testing we discovered I am a slow detoxer and have began to skillfully begin to bypass that genetic code to help my body turn things around to the best of its ability.

Ir makes me smile now remembering my sister, Judy, who passed away 25 years ago, when she used to say jokingly, “I wish I could have a parasite from South America for a little while, so I could eat whatever I wanted and get real skinny!” However, it is definitely not something you want eating at your table! Happy Thanksgiving! And count your blessings!

Blessings From Lyme

Earlier in the month I attended a local Lyme support meeting at the Alta View hospital. I have mixed feeling about attending these meetings—wanting new information, but not wanting to focus my life on the disease. This disease called “Lyme” does not define “who I am,” and I refuse to allow it to bring me down.

The meeting turned out to be very informative and truly a “wonderful day.” They try to address all aspects of health improvement at the monthly meetings, and this month we discussed the medical benefits of essential oils. Interestingly, it was a discussion specifically about my favorite dōTERRA essential oils! I even learned some new things about fighting the Lyme battle that I didn’t know before.

Towards the end of the meeting the group leader, Jenny Bezzant, who is also Mrs. Utah and a fellow Lymie, gave us a sheet of paper with a stethoscope water image on it to use in an emotional exercise. We were asked to address the statement, “Things Lyme has taken away from me.”

I let go of the anger and sorrow associated with my condition long ago, so I didn’t expect to gain anything from the emotional exercise. However, it turned out to be an interesting experience for me. As we each shared our feelings I was surprised at the sadness still hidden deep within. We learned that it is important to address our sorrow over about the things Lyme has taken from our life, instead of putting on a happy face and stuffing those feelings inside. As children we are often taught it is a sign of weakness to display our emotions. Loving, well-meaning parents calm our fears and tell us not to cry—to be a “big” boy or girl. We learn to hide our true feelings, fearing the judgement of others. Interestingly, as we shared our feelings and a few tears were shed, the emotional release in the room felt extremely healing.

After we finished Jenny gave each of us a second piece of paper with a beautiful river stream of life-giving water on it. We were asked to address a second statement: “Things Lyme has given me.” Interestingly most of us had a longer list of things Lyme had “given us”—blessings of gratitude that we wouldn’t have realized otherwise!

Lyme disease has taken away my ability to be the wife, the mother, and the grandmother I’d wanted to be. I wanted to be the grandmother that hosted slumber partied and made gingerbread cookies with her grandchildren. I’d wanted to be the mother who took her grown children shopping and out to lunch and tended their children. I wanted to be the wife who traveled to far away places with her husband in joyous retirement.

However, that was not to be. So in honor of the month of Thanksgiving, I’m counting my blessings with those of you who are suffering from your own life challenges. We all have our own “Lyme disease” or trials. Everyone is walking his or her difficult path. May we have compassion for one another and learn to live in gratitude for all we have been given. And in doing so, may you come to realize your gifts far outnumber your sorrows!

Things I Have Gained From Lyme:
1. Tranquillity—I don’t sweat the small stuff anymore—fingerprints, broken China dishes, or spilled milk.
2. Being Present in my Life—I live more in the moment, enjoying each day with whatever it brings.
3. Closer Relationships—I enjoy close relationships with each of our children and with my husband—who demonstrates his unconditional love for me daily.
4. The Love of Nature—I appreciate more fully the great gifts God has given us—the sunshine, rainbows, sunsets, trees and flowers.
5. Remembrance of My Love of Music—Somewhere along the hustle and bustle path of life, I’d forgotten how much music has always meant to me. It calms my Spirit and soothes my soul. And with our world of technology—iTunes, and iPods, it’s always available.
6. Knowledge—Learning has never been easier with the information Internet highway of electronic books. I’d forgot how much I enjoy reading for pleasure!
7. Laughter—They say, “Laughter is the best medicine,” and my life is blessed with all the various forms it comes in—hilarious things my grandchildren say, jokes I receive from friends in forwarded emails, my husband’s zany dry sense of humor, and the “laugh out loud” books and movies so easily obtained.
8. Knowing “Who I Am”—Lyme has given me a closer relationship with my Heavenly Father and the knowledge that I am truly “valued” in His eyes.
9. A Strong Testimony—My testimony of the restored Gospel of Jesus Christ of Latter-day Saints has grown and been strengthen. This is the greatest of all His gifts—to know “Who we are,” “Where we came from,” and “Where we are going” after this life.

In the words of one of my favorite recording artists and songwriters, Joshua Radin, “It’s a brand new day”—a day of gratitude for the gifts of Lyme. Like in the song’s lyrics, I hope “the sun is shining” for you during this season of Thanksgiving.

“Wishing you a day full of thanksgiving without the turkey hangover!”


* * * * *

“A grateful heart … comes through expressing gratitude to our Heavenly Father for His blessings and to those around us for all that they bring into our lives … When we encounter challenges and problems in our lives, it is often difficult for us to focus on our blessings. However, if we reach deep enough and look hard enough, we will be able to feel and recognize just how much we have been given.” (“The Divine Gift of Gratitude,” General Conference, October 2010) ~ President Thomas S. Monson

Lyme Disease Awareness Month

The month of May has been proclaimed as Lyme Disease Awareness Month!

As warm weather arrives and people spend more time outdoors, it becomes more important to acknowledge the impact of Lyme disease in our community, especially with the recent events in the Lehi, Utah neighborhood. However, residents who are aware of the threat can easily take steps to protect themselves. I was completely unaware of the existence of this disease 15 years ago when I unsuspectingly crossed paths with this mysterious malady.

Lyme disease is a serious bacterial infection that is commonly misunderstood. There is a widespread misperception that Lyme disease is rare or nonexistent in Utah. However the tick that spreads this disease can be carried by deer, squirrels, rodents, birds or even family pets, which means virtually no place is safe from the potential of infection.

Early indications of infection of Lyme disease can include a bull’s eye rash and flu-like symptoms. If treated immediately and appropriately, Lyme disease can usually be cured. If Lyme disease is misdiagnosed or goes untreated, it can cause long-term health problems, including neurological disorders, memory loss, crippling muscle and joint pain, disabling fatigue, psychological disorders or even death. Inflammation is a “bonfire” produced by the immune system in reaction to allergies, infections, poor diet, chemicals, heavy metals, and intestinal dysbiosis. It is the inflammatory response that produces many of the symptoms of Lyme disease.

Lyme Disease Points to Ponder:
1. Lyme disease is much more common in Utah than people realize.
2. There are documented cases of individuals (and entire families) who contracted Lyme disease while camping in our local mountains.
3. There is a Lyme Disease support group in Utah that meet every month to provide to provide patients and families with support and education.
4. There are VERY FEW Lyme literate healthcare providers in Utah. Many patients are forced to go out of state for treatment.
5. Lyme disease is the most widespread vector-borne disease in the USA and is a major problem worldwide. Ticks know no borders and respect no boundaries. A patient's county of residence does not accurately reflect his or her Lyme disease risk.
6. In 2007, 27,244 cases of Lyme disease were reported to the Center for Disease Control (CDC). That is 2,287 cases per month, 571 cases each week, 77 cases per day, and 3 people each hour.
7. Lyme disease is under-reported. Of the reported cases only approximately 23,000 per year meet the strict criteria. The CDC has gone on record saying that they estimate the official cases reported may be 10% of the total number of cases that would be accepted if all cases were reported, so 230,000 new cases per year is likely the reality.
8. Fewer than 50% of patients with recall a tick bite. In some studies this number is as low as 15% in culture-proven infection with the Lyme spirochete. Adult deer ticks are about the size of sesame seeds.
9. Lyme disease has been frequently misdiagnosed, especially in absence of the rash, as MS, ALS, Chronic Fatigue, Fibromyalgia, Autism, Alzheimer's, Parkinson's and others. Lyme disease is often referred to as “The Great Imitator,” as it can virtually imitate any symptom of any disease.
10. Lyme disease is the most common tick-borne disorder in the United States. Lyme disease can affect the joints, nervous system, heart, skin, and eyes.

Reducing Your Exposure to Ticks—Your Best Defense: 

1. Avoid Tick Infested Areas: Ticks prefer wooded and bushy areas with tall grass and leaf litter. When you do enter tick areas, walk in the middle of trails to avoid contact with overgrown grass, bushes, and leaf litter.

2. Dress Appropriately: Wear long pants, long-sleeve shirts, and long socks to keep ticks off your skin. Wear white or light-colored clothing making it easier to spot ticks. Wear a hat and tie back long hair. Always wear shoes (no bare feet or sandals). Tuck pant legs into socks or boots and tuck shirts into pants to help keep ticks outside of clothing. Taping the area where your pants and socks meet can prevent ticks from crawling under clothes. Do not sit directly on the ground or near stone walls.

3. Tick Repellents: Spray tick repellent on clothes and shoes before entering areas infested with ticks.

4. Check for Ticks: Perform daily tick checks after being outdoors, even in your own yard. You should also inspect your pets. Carefully inspect all parts of your clothing, skin, and body including: armpits, back of the knee, nape of the neck, navel area, scalp, and groin area. Remove any ticks before they become engorged (swollen with blood).



What If I Find a Tick?

1. If you do find a tick imbedded in your skin, do NOT panic. Not all ticks are infected. Infected ticks normally cannot begin transmitting the spirochete (the bacterium that causes Lyme disease infection) until it has been attached for about 36-48 hours.

2. Keep in mind, if you do find a deer tick attached to your skin that has not yet become engorged, it probably has not been there long enough to transmit Lyme disease infection.

3. You should remove a tick immediately! However, improper tick removal increases the chance of the tick transmitting infection. To remove a biting tick, grasp it as close to the skin as possible with fine-pointed tweezers and pull straight out slowly and steadily. Disinfect the bite site and SAVE THE TICK for possible testing. Ticks can be tested easier than humans. 

4. Avoid crushing or squishing the tick's body. Avoid getting tick fluids on your skin.

5. Never use petroleum jelly, mineral oil, matches, nail polish, or other products to remove a tick. Removal methods such as these could actually backfire, causing the tick to excrete or regurgitate out bacteria.

When to Take Antibiotics: (If you answer “yes” to any of the following questions.)

1. Were you in an area where Lyme disease is common when you acquired the tick bite?

2. Was the tick attached for at least one full day?

3. Has it been less than three days since you removed the tick or since it fell off?

4. Do you feel strangely tired, flu-like, or achy all over since you were bitten?

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

No Man Is An Island

The 1960’s Folk singer, Joan Baez, sang in her musical lyrics, “No man is an island, No man stands alone,” and like Joan, I have discovered my own truth in those immortal words. The seven unsuspecting castaways on the humorous TV sitcom, “Gilligan's Island,” also discovered the reality of these words. Gilligan and the other six passengers aboard the S.S. Minnow on that 1960’s television show, assumed they were going on a relaxing three-hour cruise, never expecting to find themselves hopelessly shipwrecked on a uninhabited tropical island. I too, had high expectations for my long awaited Royal Caribbean Cruise, never suspecting how my adventure would change the course of my life into formerly uninhabited territory!

“It’s more than a vacation, it's a royal experience,” the promotional brochures promised us. Yes! We were going on a Royal Caribbean Cruise! It would be a vacation of pure rest and relaxation, daily pampering, gourmet food, entertaining shows, and interesting shore excursions. We looked forward to the lazy days and a week in the sun, with all our responsibilities momentarily left behind. On April 1, 1995, my husband and I embarked on the adventure of our lives. It was April Fool’s Day, but the trip was no practical joke. After giving birth to six children, ranging in ages from 3–21, and in addition, loving, nurturing, raising, and caring for their every need, we were taking a once in a lifetime Caribbean cruise! It was part of an incentive reward given to my husband’s top selling hardwood flooring distributors.

The cruise was indeed an incredible adventure. Never in our lives had we experienced such stress free rest and relaxation. We slept in late every morning, ate beautifully prepared gourmet meals, watched movies, attended entertaining variety shows, visited with interesting people, and relaxed in the sun. Throughout the trip, as the ship docked, we were able to tour the intriguing sites and ruins of the local villages in three different third world countries. We ended our dream vacation on a privately owned island in Haiti, where my husband went snorkeling with the “guys,” while I relaxed with the wives, or spouse equivalents, on the sunny beach. I swam in the beautiful, clear blue water and wiggled my toes in the snow white sand (never suspect of the invisible bugs and parasites that might have been lurking there). Little did I realize how soon my life would be completely turned upside down, as if shipwrecked.

One week later we arrived home, refreshed and rejuvenated and life returned to normal. Prior to this vacation I had been fairly healthy. I’d had a bout of childhood asthma and the normal childhood diseases of the 1950’s and 60’s, but I’d needed few antibiotics and my only real professional medical experiences were during pregnancy and childbirth. My gynecologist and our pediatrician were literally the only family doctors I knew well. I prided myself on my ability to keep my children in fairly good physical health with my limited knowledge of vitamins, herbs and what I considered nutritious eating.

I had lost weight prior to my cruise and bought some new clothes, so as I returned home I was determined to keep exercising and shed the last of my unwanted pounds. I had been speed walking two miles every morning and vowed to continue. But within a week after returning home, I developed a strange throbbing pain in one of my toes, preventing me from my daily walk. Within another week a toe in my other foot was in pain as well. I could no longer wear the new dressier shoes I’d purchased for the trip, although low healed and very comfortable. I’d had a minor foot problem the previous year, which had been resolved with foot massages recommended by my chiropractor. So I assumed I was now having a different kind of foot issue. However, when massage proved too painful to endure, on the advice of friends, I sought the help of a foot doctor.

The new foot doctor, chosen from a coupon book in the mail (uncharacteristically not like me) told me I had “neuromas” in my toes, a thickening or enlargement of nerve tissue generally occurring at the base of the third and fourth toes. Neuromas are usually the result of compression and irritation of the nerve, like when women wear high healed, pointed-toed shoes. I had been a sandal wearing, opened-toed kind of shoe girl my whole life, and even my new cruise shoes were conservative by any standards. Also my pain was between my second and third toes. But what did I know? He was the doctor and I needed to get out of pain and move on with life. So I took his anti-inflammatory medication and ordered the prescribed custom made shoe inserts that he assured me were medically proven to eliminate pain and discomfort. I quickly put the possible foot surgery recommended in the back of my mind. It wasn’t long before I discovered that while I was on the pain medication I could function, but without it I was riddled with throbbing, painful feet.

Three months later, while on a Fourth of July outing at our family cabin, we received early morning news that my beloved father-in-law had passed away. We needed to pack up and return home as soon as possible. But that morning I suddenly began experiencing a flu-like fever with no other apparent flu symptoms. As my strange symptoms progressed with no relief in site, I was desperate to be available for my husband and his family. So I medicated myself with a strong over the counter pain reliever (uncharacteristically not like me). My feet were more painful than ever and medication seemed to have little or no effect. To get through the funeral I wore running shoes with my dress, as any other shoes were too painful to tolerate. When people stared or jokingly commented on my fashionable attire, I responded with humor, blaming what I now considered the most painful neuromas ever! Following the funeral, anxious to rid myself of the unexplained pain and return to normal activities, I submitted to foot surgery without research, study or thought (uncharacteristically not like me). I, like most Americans, wanted a magic pill, an easy solution that would solve all my problems.

The surgery failed to cure me and I never really walked well again. Months later I was still wearing the foot surgery boots, hobbling around, unsteady on my feet. While I appeared as though still in recovery, the truth of it was, that my feet were now swollen and I was unable to fit into any of my shoes. I began wearing sandals with Velcro adjustable straps, with promises from the foot doctor that things would get better. They didn’t. My legs and ankles began aching intensely and the mysterious pain began rapidly spreading to my knees and hands as well. Within months, my legs that previously could have leapt up our staircase two steps at a time could barely crawl up a single stair! The pain in my toes developed into burning pain in my feet, that I can only describe as what it would probably feel like to walk on “hot coals.”

The foot doctor finally suggested that I should get blood tests and seek other medical advice. Scared, crying, and frightened, I hand carried my own papers to the hospital to have blood tests that day, something I had never experienced before. My only previous experience with my blood was giving blood twice in college and having my finger pricked at my gynecologist’s office. If only I’d know to check the box marked “Lyme” before submitting my papers.

My blood tests showed that there was no infection whatsoever in my body, and no explanation could be found for the now burning sore throat pain I was experiencing. I did have a slightly elevated RA factor, and further tests were recommended. I had no idea where to begin or who could help me. After all, with the exception of having difficulty walking, I looked fine! I felt horrible, not unlike what I imagined being run over with a truck and surviving might have felt like. But the worse feeling of all was the feeling of being all alone, stranded on my own tropical island, with no rescue in sight. Thus began our long and turbulent road with a succession of different kinds of doctors, with different kinds of degrees, recommending different protocols and therapies.

While the popular, comedic, American culture television icon of “Gilligan’s Island,” aired for three seasons on the CBS network, running a total of 98 episodes, and spawning three TV movie sequels, my little tropical island experience has not proved as popular. Among the estimated 30,000 people diagnosed with Lyme disease yearly, this disease is definitely not a crowd pleaser. The seven castaways on Gilligan’s Island found that although stranded on an uncharted isle, they were never alone as long as they had each other. I too have discovered who my true friends are and how important it is to have family and loved ones who support us. Without my disease and the lonely isle of uncertainty it brought, which has ultimately become a gift, I would never have recognized the unconditional love that I have always been given by my spouse and children. Each of our journeys are different and each road changeable. But those who bravely take the voyage with us are the ones who make it all worthwhile. No man is an island!

No man is an island,
No man stands alone,
Each man's joy is joy to me,
Each man's grief is my own.

No man is an island,
Way out in the blue,
We all look to the one above,
For our strength to renew.
~ Joan Baez, American Folk Singer

Note: Lyme Disease is prevalent across the United States and throughout the world. A tick doesn't see borders on the states and say, “Hey I am stepping off a deer from Wyoming and onto a deer from Utah.” Where you live doesn't effect your chances of getting it because everyone travels and everyone is susceptible to Lyme Disease whether you want to believe it or not!

Statistically speaking, fewer than 50% of patients with Lyme disease recall getting a tick bite (like me). Fewer than 50% of patients with Lyme disease recall getting any type of rash (like me). (www.lymewalk.org)

In 2007, 27,444 cases of Lyme disease were reported to the Center for Disease Control and Prevention (CDC) in the United States. However, the CDC has gone on record saying that they believe only 10-12% of Lyme disease cases are actually being reported to them. Many experts believe 200,000 people per year in the United States alone are being infected with this disease! (www.lymeresearch.org)

It Takes a Village

There’s a 1966 song that still plays in my head, by Marvin Gaye called, “It Takes Two,” and statistically speaking, two people have proven effective in marriage. But when you have a crippling, neurological form of Lyme disease, no longer able to stand or walk, “It takes a village” of people to care for your needs and replace the former you. I have five neighbors who fill an appreciated service, as they come one day a week each, providing physical therapy and highly valued, “girl talk.” My husband has become chief cook and bottle washer, care taker, housekeeper, lawn mower, gardener, child nurturer, and dedicated Sunday School teacher, all while running his own business, mostly from home by cell phone and computer. He has many balls in the air to balance, so to speak, although claiming his are generally all lying on the ground. Three of our married daughters have volunteered and divide their time weekly as well, providing me with muscle soothing massages, five times a week. They along with my neighbors, provide a much-needed relief to my overworked, underappreciated, tired husband.

While my daughters massage, I am able to share in their lives and visit with my grandchildren. This provides for some hilariously, entertaining stories, and delightful conversation. It’s been said that, “Laughter is the best medicine,” and the stories about my grandchildren are more than entertaining. I must admit however, that these same experiences were not as humorous when they were happening to me as a young mother. But now I giggle under my breath, enjoying the mother-child scenes displayed before me in all their glory. It’s vindication somehow for all have gone through, having “been there, done that!” Now it’s their turn, realizing what they have signed up for and wondering why there were no specialized instructions with delivery.

Last week, for instance, my daughter, Ashley came to massage, bringing along three-year-old Isaac. Ashley’s older sister, Liz, was already at our house, doing her weekly house cleaning, a service we pay her meagerly for, but could never actually pay her what she is actually worth to us, as she does so many extras, like decorating Christmas trees, and organization projects. Liz brought her children too, Acacia, six and Joshua, four. Liz is normally an overprotective mother (I can’t imagine where she picked that up from, as I stop breathing watching Joshua climb our wall unit). However, on that particular day Liz allowed her active children to play outside on my neighbor’s swing set, giving Acacia her cell phone with our number programmed in, just in case Joshua decided to wander away. This was her plan, in order to be able to clean quickly and efficiently without whining children begging for her undivided attention. Acacia is a rule follower and very responsible. I could only imagine the brain cells churning in her head as she was probably thinking, “I’m going to be so good at this. I think I’ll be ready for my own cell phone.”

It was decided that Isaac could go outside as well, as he never gets to go outside without his mom. He agreed that he would stay by Acacia, never going near the road, with threats of having to come inside if said rule was disobeyed. (Where do my girls come up with this stuff? It’s like we all read the same mom book!) Anyway, less than five minutes later, Acacia called Aunt Ashley. “Ashley, Isaac is throwing rocks in my eyes.” “Let me talk to him,” Ashley demanded, rolling her eyes and muttering something under her breath about little boys. “Isaac, did you throw rocks in Acacia’s eyes?” she asked. I am thinking, “Of course he’ll say no. What kid would say yes?” To my surprise Isaac said remorsefully and honestly, “Yes.” “We do not throw rocks in peoples eyes,” Ashley patiently explained. “Say we do not throw rocks in people’s eyes!” “We do not throw rocks in people’s eyes,” Isaac repeated. “Tell Acacia you’re sorry,” Ashley instructed. “I’m sorry,” Isaac said . . . end of conversation . . . play resumed.

Five minutes later, the phone rang again. It was Acacia. Isaac had committed yet another infraction, bordering on a criminal act in Acacia’s mind. Once again Isaac was summoned to the phone and the conversation went much as before, substituting the new crime of course. Every 5-10 minutes there was a new phone call, sometimes with Joshua being the offender and sometimes it was just Acacia wanting to chat, hungry with her new found power. Finally, one last phone call and Isaac was again summoned to talk with his mother. The phone was on speaker and I could hear Isaac's reply in the back ground. "No thanks, I don't want to talk to her." He had obviously caught on to the conversational pattern occurring and didn't want to be bothered anymore!

We win some, we loose some, but there is always pay back for each new parental idea. Always, you can be sure that whatever worked yesterday may not magically work again today. The rules may change, but kids like to keep life interesting, least we become bored with our dull, uneventful days! Gratefully, if we are fortunate, we have family and friends to share experiences and ideas with. Living with Lyme disease and raising children are similar in that like the African proverb says, “It truly takes a village!”

I Blame Hollywood, or Maybe June Cleaver!

I was 44 years old, having taken my three year old and living with my parents for what I assumed would be a short two-week visit (which turned into two months). I had just been diagnosed with a mysterious illness called, Lyme disease. Having abandoning my husband and five older children, leaving them to fend for themselves, I sought refuge in my mother’s caring arms. Surely with two weeks of loving care, I would be back to driving carpools and cooking meals in my self-imposed career called, motherhood.

That morning my father came into my room to chat, he himself miserable with shingles and the aches and pains of old age. “Linda, do you know why they call old age the Golden Years?" I replied, “No Dad, why?” “Because the doctors get all the gold,” he laughed, scratching his itchy shingles rash. He had only been to but a few doctors in his life, yet it was funny all the same. Little did I realize how true of a statement it would become in the following 13 years as I have battled my disease. It was 1996 and I had been searching for answers to my unexplained symptoms for a year. I lived in Utah, where no one tested for Lyme disease at the time. “Lyme disease?” I’d said, to the Nevada doctor in the clinic where I was finally diagnosed. “What’s that? Do you get it from eating limes?”

As I begin writing this first entry in my new online blog, I smile at the irony of it all, having told my mostly grown children, “Why would anyone want to write a public journal?” I wonder if I will tell them about it or if it will be one of those dark, hidden family secrets, the kind that are eventually revealed when you are standing in line at the supermarket, only to realize your life has suddenly been exposed, openly displayed on the front page of a trashy tabloid newspaper. Ah, the justification of it all! It would serve my children right and give them additional material to complain to Oprah about, telling her how their formerly sane mother cracked under pressure, becoming “crazy mom!”

How did I get here? Why did I choose this crazy life of mothering helpless creatures, loving, nurturing, caring, knowing they will eventually come to a point in their lives where they blame me for everything gone wrong, as I did my mother. The mother-daughter bond is a love-hate relationship, one we’re never entirely able to break away from, even if we wanted to. I blame Hollywood really, or maybe June Cleaver! The movies fill our heads with romantic ideas of motherhood and June certainly didn’t help out either in her 1950’s Television sitcom, "Leave It to Beaver." June served three nutritiously prepared meals everyday, displayed on perfectly set tables with china and crystal goblets. She was greeted each morning by her well-dressed husband, eager to go to work and be the bread winner and her two shiny faced, clean cut boys, handsomely dressed and ready to begin their school day. Oh that Beaver, now he was a rascal, sometimes having dirt under his fingernails, but not June. She cooked breakfast immaculately dressed with wrinkle free, pressed, tightly wasted dresses, salon hairdo, and pearl necklace displayed neatly around her neck. I don’t know how she managed, as I think of my sleepy-eyed, nightgown attire in my years of young motherhood, yawning as I put cheerios on the table, wondering if I’d get a chance to shower that day. June wore this same outfit when cleaning walls and vacuuming her home, never breaking a sweat or mussing her hair! Oh wait, I don’t think her home ever needed heavy cleaning, it was dirt free and magically self-cleaning somehow!

So here I am today, in the middle years after raising most of my children, rapidly approaching my mature years (old age). I am wife, mother of six, grandmother to eight and counting (hopefully), living my life with Lyme disease. It’s not who I am nor does it define me, as I think of those whose voices have lowered with sadness when asking my family how I’m doing, as if my situation is tragic beyond belief. My disease has marched on as my husband and I have attended high school and college graduations, given four wedding receptions as our children found love and married, and as we have held each new grandchild for the first time. It’s true that this disease has been expensive and the medical professionals get all our gold, but my life is golden, nonetheless!