Nancy’s Story

Nancy~

PREFACE I DID NOT WANT TO PUBLISH MY STORY. IT REFLECTS MY INNERMOST SELF AND I FEARED PUTTING MYSELF OUT THERE IN THE WILDNESS OF OUR WORLD. HOWEVER, THERE IS SOMETHING FAR MORE IMPORTANT THAN ME. IT IS THE WIDENING SPREAD OF SUFFERING DUE TO THE STEALTHY SALIVA OF AN INSECT NO LARGER THAN A POPPY SEED. THIS IS REAL. IT IS. AND SO I BEG, PLEASE PROTECT YOURSELVES FROM INSECT DISEASES. THIS RAVAGING DISEASE ESPECIALLY EFFECTS THE LIVES OF CHILDREN, THE ELDERLY, AND YOUR PETS.

MY STORY

IN THE SPRING OF 2010, I WAS TREATED FOR LYME DISEASE WITH DAILY IV AND ORAL ANTIBIOTICS FOR THREE MONTHS WITH GREAT SUCCESS. NUTRITION AND SUPPLEMENTS ALSO PLAYED AND PLAYS A BIG PART IN WELLNESS. WHAT FOLLOWS IS THE LONG, PAINFUL ROAD IT TOOK TO BE HEALED.

1983 WAS THE YEAR I WAS FIRST TESTED FOR LYME DISEASE, WHILE LIVING AND WORKING IN FAIRFIELD COUNTY, CT. THE FOLLOWING EVENTS LED ME TO GETTING TESTED: I WAS 23 YEARS OLD AND A WELLNESS FIEND. WHILE RUNNING THROUGH THE BEAUTIFUL SURROUNDS OF MIANUS RIVER PARK AT DAWN ONE BEAUTIFUL AUGUST DAY, AS I DID A FEW TIMES A WEEK, IT OCCURRED TO ME THAT I HAD BRONCHITIS FOUR TIMES IN THE PAST YEAR. I ALSO EXPERIENCED FLU SYMPTOMS AND STOMACH VIRUSES TOO MANY TIMES, SOMETIMES LASTING A DAY OR TEN … YES, I PLOWED THROUGH ON THOSE DAYS, HAVING YOUTH ON MY SIDE. I ALLOWED NOTHING TO GET ME DOWN OR STAND IN THE WAY OF ALL I WANTED TO ACCOMPLISH. YET THERE WAS A NAGGING FEELING ABOUT THESE SETBACKS. WHAT WERE THEY?

I ACTUALLY HAD THE AUDACITY TO ASK, “WHY ME?” WHEN THE NEXT FLU-TYPE BOUT HIT ME, I VISITED MY LOCAL MD. “WHATEVER IT IS,” I THOUGHT, “EARLY DETECTION AND TREATMENT IS THE KEY TO GETTING BACK ON LIFE’S HEALTHY TRACK.” FORTUNATELY, MY MD KNEW OF LYME DISEASE, PERHAPS DUE TO OUR PROXIMITY TO OLD LYME, CT OR, BECAUSE OF HIS DEDICATION TO REMAINING ON TOP OF NEW MEDICAL FINDINGS.* HE INFORMED ME THAT I HAD THE TYPICAL SYMPTOMS OF A RECENTLY DISCOVERED PATHOGEN THAT CAUSES SOMETHING CALLED LYME DISEASE. THE BLOOD TEST RESULT WAS NEGATIVE. I WAS DIAGNOSED WITH EPSTEIN-BARR VIRUS AND LOW IMMUNOGLOBULINS; BOTH ARE COMMON IN LYME DISEASE PATIENTS. WE DID NOT KNOW THIS IN 1983.

*THIS MD’S KNOWLEDGE WAS CUTTING-EDGE. MANY MD’S TODAY DO NOT KNOW ENOUGH ABOUT DIAGNOSTICS AND TREATMENTS FOR TICK DISEASES. AS TIME MOVED FORWARD, MULTIPLE SYMPTOMS OF THIS STRANGE AND INSIDIOUS DISEASE WRACKED MY BODY AND MIND. WEEK-LONG BOUTS OF FATIGUE, SEVERE PAIN, AND MUSCLE WEAKNESS LINGERED TOO FREQUENTLY. DEPRESSION LURKED IN A DARK FOG SURROUNDING MY CONSCIOUSNESS, THEN HIT ME LIKE A 2X4. AT TIMES, WITH INCREASING FREQUENCY OVER THE YEARS, I WAS MEMORY CHALLENGED. POOR HEALTH PHASES WERE INCESSANT. HAVING BEEN ACTIVELY ENGAGED IN A LIFETIME OF FITNESS AND NUTRITION COUPLED WITH GOOD GENES*, I WAS LOSING PRECIOUS TIME. THERE WAS TOO MUCH LIFE TO BE LIVED AND I WAS MISSING OUT. ABSOLUTELY UNACCEPTABLE. OUR BODY IS GOD’S TEMPLE. I CANNOT IMAGINE THE ONSET OF THIS DISEASE IN A BODY THAT MIGHT ALREADY BE HEALTH-CHALLENGED.

*I THANK GOD FOR THE HEALTHY WAY THAT I WAS RAISED. MY PARENTS AND GRANDFATHER, IN PARTICULAR, HAD TREMENDOUS RESPECT FOR LIFE AND HEALTH. THROUGHOUT THE NEXT TWO AND A HALF DECADES, I REMAINED SYMPTOMATIC; NEW HEALTH RELATED ODDITIES, OFTEN DEBILITATING, SURFACED WITH NO FOREWARNING.

AFTER MOVING TO A PHILADELPHIA SUBURB IN THE 1990’S, SEVERAL GENERAL PRACTITIONERS AND SPECIALISTS* TESTED ME FOR LYME. THE TEST RESULTS WERE CONSISTENTLY NEGATIVE UNTIL A NEW TEST BECAME AVAILABLE IN THE MID-90S. ONE VERY DEDICATED MD STRONGLY ENCOURAGED LYME TESTING. MY THOUGHT WAS “OH NO, NOT ANOTHER LYME TEST. WHAT’S THE USE?” I TOOK HIS ADVICE, RESULTING IN A POSITIVE TITER FOR TWO TICK DISEASES: LYME AND ERLICHIOSIS. SINCE THEN, I HAVE BEEN THROUGH MORE TREATMENT PROTOCOLS THAN I CAN REMEMBER. THE LYME DIAGNOSIS OFFERED TREMENDOUS RELIEF. UNTIL THIS TIME, I WAS CONVINCED THAT I WAS EITHER CERTIFIABLY INSANE, SUFFERING FROM MUNSCHENHAUSERS DISEASE OR SOME OTHER DEBILITATING UNKNOWN DISEASE RESULTING IN A SLOW, CRUEL DEATH. THIS IS NOT AN OVERSTATEMENT. THE MD THAT ULTIMATELY DIAGNOSED ME ASSURED ME THAT IT IS IMPOSSIBLE TO IMAGINE A THREE MONTH FEVER, ELECTROLYTE IMBALANCES, A DECREASE IN BLOOD CA BY 40%, MIGRAINES, LACK OF NORMAL REFLEXES – SOMETIMES NO REFLEXES, SHORT TERM MEMORY LOSS, LOSS OF DEPTH PERCEPTION, INSOMNIA, INTERMITTENT LEG PARALYSIS , INABILITY TO DECIPHER COLORS, VERTIGO CAUSING SEVERAL SUDDEN PHYSICAL COLLAPSES – I’D RATHER NOT GO ON. THE LIST IS DEVASTATING AND EVER-CHANGING OFTEN WITHIN THE COURSE OF A DAY.

* AN ENDOCRINOLOGIST, RHEUMATOLOGIST, NEUROLOGIST, CARDIOLOGIST, PULMONOLOGIST, INFECTIOUS DISEASE MD, NUTRITIONIST, AND A PSYCHIATRIST. I FELT LIKE A MANIACAL HYPOCHONDRIAC. THE TWO YEARS BEFORE DIAGNOSIS WERE THE MOST CHALLENGING. WAS I IMAGINING THIS? WAS I LOSING MY SENSIBILITIES? WAS IT STRESS? OF COURSE, I WAS STRESSED, NOT BEING ABLE TO FUNCTION MINIMALLY ON A DAILY BASIS. OR A YEARLY BASIS FOR THAT MATTER. THE FINANCIAL COST OF BEING UNABLE TO WORK WAS CHALLENGING, BUT NOT IMPOSSIBLE. YET.

I WAS UNABLE TO RAISE MY SIX-YEAR-OLD SON ACCORDING TO MY OWN PRE-EXISTING VALUES AND BELIEFS. ON SOME DAYS, I COULD NOT WILL MY VOLUNTARY MUSCLES TO MOVE. MY LITTLE GUY LEARNED HOW TO BRING THE CEREAL BOX, MILK, A BOWL, AND A SPOON TO MY BEDSIDE SO I COULD HELP HIM PREPARE HIS BREAKFAST. HE ATE ON A TRUNK NEXT TO MY BED. WE PLAYED RESTAURANT. MORE OFTEN THAN NOT, I COULD NOT GET HIM ON THE BUS; HE MISSED ENTIRELY TOO MANY SCHOOL DAYS. CONTRARY TO ONE OF MANY “I WILL NEVER” IDEALS, I ALLOWED THE TV AND VCR IN MY BEDROOM. LEGO’S, ACTION FIGURES, ART SUPPLIES, BOOKS, AND STUFFED ANIMALS WERE THE MAINSTAY OF OUR DAYS AS I LINGERED IN BED, USING MY ENTIRE WHEREWITHAL TO STAY AWAKE AND THINK ABOUT HOW TO CREATE SIMPLE, NUTRITIOUS MEALS. WAKEFULNESS IS NECESSARY WHEN RAISING A CHILD. WHEN I COULD NO LONGER KEEP MY EYES OPEN, AT LEAST WE WERE IN THE SAME ROOM. MIRACULOUSLY, HE NEVER STRAYED TOO FAR FROM MY BEDROOM. MOSTLY, WE WOULD LIE ON THE FLOOR AND PLAY, HOUR AFTER HOUR. WE WATCHED MORE DISNEY MOVIES, BILL COSBY AND FRESH PRINCE OF BEL AIRE TV SITCOMS THAN I EVER BELIEVED POSSIBLE. AFTER ALL, I WAS GOING TO BE THE TYPE OF MOM THAT ALLOWED MINIMAL, IF ANY TV. INSTEAD, LIFE WITH MY SON WAS GOING TO BE FILLED WITH HIKING, VISITING FAMILY NEAR AND FAR, CANOEING, FISHING, SKIING, SKATING, BALL PLAYING, BIKING, THE BEACH, MUSEUMS, COMMUNITY SERVICE, OUTDOOR CONCERTS, WALKS IN THE CITY … ALL THAT WAS OF VITAL IMPORTANCE TO LIFE ITSELF. LOSS OF A HEALTHY LIFE AND LOSS OF DREAMS AND GOALS ARE DEVASTATING; JUST DEVASTATING BEYOND WORDS. DID I TELL ANYONE HOW BAD MY HEALTH WAS? OF COURSE NOT – IT WAS THAT PRIDE THING; THAT “I CAN DO IT MYSELF,” STRONG-WILLED INSISTENCE THAT OFTEN WORKED AGAINST ME THROUGHOUT MY LIFE. THERE IS SO MUCH MORE TO SHARE. IT IS EXHAUSTING TO RE-LIVE WHAT WAS FOR ME, A TRAGEDY. I PRAY THESE EXPERIENCES WILL IN SOME WAY MAKE A DIFFERENCE FOR THOSE WHO SUFFER FROM ALL ‘INVISIBLE’ ILLNESSES. MORE ON THAT, NEXT TIME …

HERE COMES THE GOOD PART: IN THE SUMMER OF 2009, I FELL INTO ACCEPTANCE/PASSIVE MODE, WITH THE HEAVINESS THAT ONE-TOO-MANY DISAPPOINTMENTS CAN BRING, RESIGNING MYSELF TO THE FACT THAT I WILL LIVE OUT MY REMAINING YEARS WITH MULTIPLE PHYSICAL AND COGNITIVE DEFICITS. I WILL MAKE THE BEST OF MY GOOD TIMES AND BELIEVE THAT THERE IS INHERENT GOOD IN SOME WAY, DURING, OR, BECAUSE OF THE ROUGH TIMES. MY MOM NOTICED THAT I WAS GIVING UP THE HOPE THAT I MIGHT HAVE THE HEALTH THAT GOD GAVE ME BEFORE THE NIGHTMARE BEGAN. SHE REMINDED ME OF THE ONGOING, EXPEDIENT LEAPS IN MEDICAL ADVANCEMENTS. I REMEMBER HER WORDS: “THERE JUST MIGHT BE SOMETHING OUT THERE THAT WILL HELP YOU, NANCY. DON’T GIVE UP HOPE.” HAVING THE ENCOURAGEMENT AND SUPPORT OF MY MANY EARTHLY ANGELS, I EXHAUSTED WHATEVER ADRENALINE REMAINED IN MY BODY AND REVVED UP WHAT WAS LEFT OF MY BRAIN FUNCTION. I WENT INTO EXTENSIVE RESEARCH MODE TO LEARN WHAT HAD BEEN RECENTLY DEVELOPED IN THE WORLD OF INSECT DISEASES, TESTING, AND TREATMENTS. OF EQUAL IMPORTANCE, I DROPPED IN ON A FAMILIAR ONLINE LYME DISEASE SUPPORT GROUP. THE PURPOSE OF THESE TYPES OF GROUPS IS TO SHARE INFORMATION AND TO SUPPORT ONE ANOTHER THROUGH THE HAZY, NARROW TUNNEL THAT MUST BE NAVIGATED TO FIND EFFECTIVE, INSURANCE-COVERED DIAGNOSTICS AND TREATMENTS. AS GANDHI ONCE SAID, “A SMALL BODY OF DETERMINED SPIRITS FIRED BY AN UNQUENCHABLE FAITH IN THEIR MISSION CAN ALTER THE COURSE OF HISTORY.”

THAT IS EXACTLY WHAT MY SUPPORT FRIENDS DID AND STILL DO FOR ME. WHILE PERUSING THIS GROUP, I LEARNED ABOUT A DIAGNOSTIC AND TREATMENT CENTER FOR TICK DISEASES THAT OFFERED A PROMISING DEGREE OF HEALING SUCCESS, ONLY MINUTES FROM MY HOME. THERE IT WAS – A BIT OF LIGHT AGAIN … A BIT OF HOPE. LEAVE IT TO THE GENTLE ENCOURAGEMENT FROM MY TOP CHEERLEADERS, MOM, DAD, MY SON, SIBLINGS, OTHER FAMILY MEMBERS, FRIENDS, AND A MULTITUDE OF FELLOW LYME AFFLICTED SUPPORTERS AND THEIR FAMILIES. THEY HAVE ALL LIVED WITH IT ONE WAY OR ANOTHER. THERE IS A SAYING AMONG MANY THAT SUFFER WITH CHRONIC DISEASES, “YOU DON’T GET IT UNTIL YOU GET IT.” BEING TWO OF A VERY FEW, MY PARENTS DO GET IT AND THANKFULLY, HAVE NOT GOTTEN IT.

I CANNOT LEAVE OUT THE INCREDIBLE LOVE AND SUPPORT OF MY CHURCH FAMILY, AND DIE-HARD FRIENDS. KATHY, JUDY, JUNE, JACKIE, JO, ELBERTA, FRAN, AND MELISSA, GAVE AND GIVE ME UNCONDITIONAL LOVE, HOPE, FAITH, AND GOOD HUMOR! THE GOD-GIVEN WONDERFUL INDIVIDUALS IN MY LIFE HAVE NEVER FAILED TO BELIEVE IN GOD’S GUIDING HAND, IN ME, OR IN MEDICINE. I ATTRIBUTE MY NEW-FOUND WELLNESS TO THE HEALING POWER OF PRAYER. SPECIAL ACKNOWLEDGEMENT THANK YOU, LISA HILTON*, FOR ENCOURAGING ME TO SHARE MY STORY. THANK YOU FOR ENCOURAGING ME TO REMAIN ACTIVE IN THE FIGHT FOR ACCURATE DIAGNOSIS AND PROPER, FAIR TREATMENT FOR THE CALAMITOUS TICK DISEASES, BOTH KNOWN AND UNKNOWN.

*LISA HILTON IS A DEDICATED AND TIRELESS ADVOCATE FOR ALL OF THE COMMUNITY SUFFERING WITH TICK DISEASES, WHILE DEALING WITH HER OWN TICK DISEASE AFFLICTION. THIS IS IMPOSSIBLE, BUT SHE DOES IT. LISA IS GOD’S VEHICLE. THROUGH HER, WE ARE GIVEN HOPE THAT IS INDESCRIBABLE. I HAVE CONFIRMATION IN MY HEART THAT LISA HAS SAVED THE SANITY AND LIVES OF MORE PEOPLE THAT WE WILL EVER NOW.





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