Part Ten: Living with Chronic Lyme Disease: a long and difficult journey

Part Ten: Lyme Disease Diagnosed, and Still Doctors Don’t “Get it” 

My new "out-of the-mainstream-doctor/nutritionist" had been a God-send. The diets and supplements made me much healthier, but my doctor also noted the dips in my health that seemed to be cycling with some regularity, so after almost two years on her special diet and supplement regime, she tested me for Lyme Disease using the Western Blot IgM and IgG Blood tests.

These blood tests were sent to Igenex, a special lab for tick-borne illnesses, along with my medical history. At the time little was known about this special lab by regular mainstream doctors. This lab has both extra-sensitive testing equipment as well as specialists in tick-borne illnesses to properly review the histories as well as the lab results. Their conclusion was that I definitely had Lyme Disease and needed proper treatment. My IgG test was Negative (indicates current or old infection) and the IgM test positive (indicates current infection).

Because my IgG test was negative, but the actual test result paper read “equivocal” for all but one band, other doctors I worked and consulted with were not so sure that I should consider extensive antibiotic treatment without further testing to rule out a false positive test. Confused and not wanting to believe that I had Lyme, I took the advice of the regular mainstream doctors and asked my personal doctor for more testing. She agreed and a series of 24 hour urine tests were done following medication that was taken to flush out any potential antigens from my bladder walls. These test were positive. Lyme Disease could no longer be denied and as I read about this illness, I realized my history all made sense. My doctor also told me, what it took years for me to fully understand, that I was far sicker than I ever imagined.

I have since learned that testing for lyme disease is extremely difficult.  There are many different strains of Borrelia (lyme infection), and it is able to escape detection and treatment by mutating into a cyst form and hiding so that the immune system doesn't produce antibodies to kill it.  For this reason diagnosis by tests alone is NOT recommended and clinical findings must be considered as well, though in my case, my blood IgM test for active infection was positive, as were my urine antigen tests.

I then asked about my children and whether or not I could have passed it onto them during pregnancy as my pregnancies were so difficult and I had had the false positive syphilis (VD) test when I was very young. My doctor helped me to understand this false positive test had likely picked up the presence of my Lyme spirochete infection in my early twenties. I learned what many doctors do not know: Lyme can be passed in utero and my doctor agreed to test them as well. The results of their tests returned with a “strong positive”. Apparently they tested more positive than I did as their immune systems were not as damaged, having had the illness less time than me.They too had never had a tick bite or any rash excepting those that came with the usual childhood illnesses.

Their history indicated that their Lyme was most likely congenitally acquired.   Many doctors do not know that Lyme Disease can be passed in utero, and it is suspected that it may also be passed sexually. Fortunately, my husband seemed to be without clinical findings and went on to have a negative Western Blot test.  (to be continued....)

The illustration above is done by Hannah McMillen and the figure drawing by Sarah Kate McMillen

 (*Caution: These blogs are not meant to be actual medical advice but rather meant only to empower others to face medical issues as equal partners with their medical providers and never give up questioning and exploring what alternatives may be available for conquering their illnesses.  Living life with a chronic illness is a daily challenge and it is my prayer that no one give up on living their life to the fullest extent possible.)

Part Eight: Living with Chronic Lyme Disease: a long and difficult journey

Part Eight: Small Town Living Knows All Secrets

It is not surprising that my husband took on greater roles with raising our kids, though I used my well-developed farm voice like a megaphone and continued exerting my influence over my family as I could. I didn't know it at the time, but our small town collectively felt bad for my kids and so their friends’ parents extended their parenting to my kids and myself too, protecting me from their antics that should have been mine to know.

My youngest daughter, read her Mother's Day special writing about me, to me at a first grade Mother’s Day program. I shuddered to think of what she might write, with good reason.  She told the story of her mother as only a child can.  She read that she she too had gone on a family vacation to Disneyland, like the other children in her class, when she was six months old, though couldn't remember riding any of the rides.  She also wrote about her having to clean the house, upstairs and downstairs and all around it while her mother was in bed and added that she also fixed her own lunches to take to school. I was embarrassed but tried to be gracious and added that she was indeed a wonderful daughter, though I wanted to cheerfully choke her! It was an embarrassment to my daughter as well, for her greatest fear was to be laughed at, and the town had a good chuckle over her personal rendition of her Cinderella story. The town was privy to what I hoped I could keep private.

Wherever I went in our small town after that, inquiries would be made as to whether she could be rented out. It spoke loudly of what I knew: our life wasn't normal and the paper she wrote and read to me was glaringly honest and spoke of the hardship that my health had taken on my family, not to speak of my pride as well! It didn't matter that I took on teaching Catechism at church, for it was my child that spent the longest time in the confessional, though at least the priest and God would keep her complaints confidential! Our life was far from perfect, and I wasn't the mother or wife I had planned to be! Our girls worked hard, as did my husband and some things never changed: when I wasn't working hard, I could be found on the sofa or in bed...still too tired, or sick. Little did I know that this was but preparation of what was yet to come! (to be continued).....

Note that this blog precedes others that will discuss my diagnosis of Chronic Lyme, now known as Disseminated Lyme, and will discuss the split in the medical community regarding whether or not it exists and how it should be treated, and the challenges of getting adequate treatment with this politically unpopular disease.

My story is not an uncommon one.  Lyme patients often suffer being victimized twice, once by the disease and another by the medical community that questions the sanity of those that know that this illness exists and seeking treatment often puts us at odds with the majority of the medical community. Although writing my story is cathartic, I really don't have a need to live my story more than once, but as it is a common story for lyme patients, it is a story that needs to be told as seen through the patient's eyes.  More and more of us are coming out with our private stories, no longer hiding what we, ourselves would prefer to remain private. Only recently the CDC revealed that the incidence of this illness is thought to be ten times greater than reported, and those of us familiar with the CDC know that this figure is likely a gross under-estimate of the problem caused by this disease!  It is also a disease that is not just passed through tick bites, and my children's Congenital Lyme is a testimony to that! It is a disease that is worthy of research support, as it is a health threat not unlike cancer and AIDS that is taxing the vitality of people all over the world!

The illustration above is done by Hannah McMillen and the figure drawing by Sarah Kate McMillen

(*Caution: These blogs are not meant to be actual medical advice but rather meant only to empower others to face medical issues as equal partners with their medical providers and never give up questioning and exploring what alternatives may be available for conquering their illnesses.  Living life with a chronic illness is a daily challenge and it is my prayer that no one give up on living their life to the fullest extent possible.)

Part Seven: Living with Chronic Lyme Disease: a long and difficult journey

Part Seven: Life Goes On and Disease Symptoms Progress

We lived on the farm for six years before the owners decided to sell it. We were heartsick about the decision and yet knew it was time to quit renting and get back into a house of our own and so we relocated to the nearby town of Castleton, putting us only a short distance from the small city of Rutland, and still only a fifteen minute drive down the road from our collection of new Vermont friends, and also a bit closer to my husband's work.

We had learned the difficulties of being too rural and Castleton was a beautiful little college town, with more local ammenities and we moved into an air-tight almost new house.  Stress came with having to use our window shades for privacy once again, but it was still semi-rural, and our beloved Vermont countryside was still there to enjoy all around us. Our new home offered us walls without the scritch-scratching of critters within them and the cold didn’t blow in. It was very quiet and nice and we were ready for a more modern house, though it was a good deal smaller than the farm house.  It was a local move and easy next to our cross-country move.  We did miss the wood stoves we had on the farm when the power went out, but in our new home, the power outages were less frequent.

I was tying fishing leaders for Orvis then as my school job only lasted one year.Leader tying allowed me to stay home with my youngest child, and was relatively stress free, though the work wasn't always consistent,so I decided to return to nursing for greater job security and did a refresher course at a nearby hospital to renew my RN license. I went onto achieve this goal and the next, becoming a per diem office nurse in a family practice. The leader tying work became an extra job that my husband and I did on the side with the help of our girls. Working per diem was nice as it gave me the option of having some days off as I needed to accommodate days I didn't feel well  and with the side "leader work" our income was pretty steady. As long as I was on level ground and wearing "sensible shoes" I was steady on my feet. I was already noticing that with patience, it seemed that my symptoms would pass, but others would replace them.

Serious headaches and frequent bladder infections were my next symptoms. (Spirochetes move into the brain and also the bladder walls—again I learned this much later). I was under the care of my GP as well as a rheumatologist and a GYN doctor, and as with all my other symptoms, I was treated for separate acute illnesses and it was thought that CFIDS made me more susceptible to them.

My headaches would make me pace and cry in the dark or sometimes rice-bag my head to my pillow to decrease the dizziness that sometimes went with them. It was so bad one day that I had to call friends to pick up my kids from school and summoned my husband home.  I couldn't move without the entire room spinning. Dizziness had turned to vertigo and I remember sticking my head in a pan as I was so nauseous.  I even rice-bagged my head  to my pillow to slow the spinning sensation and crawled to the bathroom, as I couldn't walk. My doctor prescribed Antivert over the phone, and I saw him only when I was better and could travel.

Emergency care at our local hospital, I had already learned, was to be avoided.  I was chemically sensitive and so, many medications given to decrease my pain or alleviate my symptoms made me actually feel worse, not better.

UTI’s (urinary tract infections) were frequent and came on suddenly and violently.  I was on a standard antibiotic treatment for them and always kept a supply of bladder anesthesia medication in case I couldn't get in to see my doctor right away. I simply carried on doing the best I could to deal with chronic exhaustion, and these more acute flares, working per diem as an office nurse and helping to raise our two girls. I didn't even stop to consider alternatives to my treatment—which at the time, I would have simply asked, “what alternatives?”

I figured that pushing myself didn't really do any harm, as no matter what, I would be “down” the day after any good day, so I made “hay when the sun was shining”. My do-list was readied when I was horizontal in bed or on the sofa and I worked as efficiently as I could when I had a good day. I sought hormone replacement treatment (HRT) as I still felt like my illness was cyclical and must be related to the only cycle I knew I had, and was still trying to blame it on hormones or lack thereof. Our move to the country had not cured my ills, though small town living certainly made it easier to connect to our community and I don't know what we would have done without the support of friends. (to be continued....)

The illustration above is done by Hannah McMillen and the figure drawing by Sarah Kate McMillen

(*Caution: These blogs are not meant to be actual medical advice but rather meant only to empower others to face medical issues as equal partners with their medical providers and never give up questioning and exploring what alternatives may be available for conquering their illnesses.  Living life with a chronic illness is a daily challenge and it is my prayer that no one give up on living their life to the fullest extent possible.)

Part Six: Living with Chronic Lyme Disease: a long and difficult journey

Part Six: A New Convert and a Serious Warning

It is not surprising that with our move came a conversion of heart and spirit. I needed strength beyond my own and though I prayed and had a strong Christian faith, I converted to Catholicism at this time. Attending a Stations of the Cross Service brought meaning to my suffering that I needed. I realized as never before that a crucifix, didn't just symbolize faith and salvation, but was also the the very symbol of suffering. I was beginning to appreciate that in embracing my life, I would also be embracing suffering, as I was diagnosed with having a chronic illness. I needed even more faith to take my life, full of uncertainties, on a day to day basis.

A bonus to being Catholic also meant that I also got extra "earthly Fathers” to watch over me and my family. Our priest before moving, warned us to be sure to practice a lot of forgiveness during and after our move! He knew what we did not: that we were biting off a real challenge in the midst of already being seriously challenged with my ongoing health issues and Vermont, though beautiful, would be no utopia.

I was already sick and tired and we weren't just moving across country, changing our home, jobs and friends, but changing our life style from city to rural living as well. It was a new adventure and our chance for a new life!! Without a commitment to this dream of a better life, we likely wouldn't have made it. My husband had rented us a big old farmhouse, with emphasis on the old, on a three hundred acre farm, for no more than our house payment in Denver and thus began our new life in Vermont.  It was a move that we have never regretted, though it did make us question our sanity for years to come.

Falls followed, quite literally, and were to be my next symptom. I didn't even stretch out my arms to catch myself and just simply went flat down! These falls, I knew, were different from falls caused by ankle instability. Despite their “inconvenience”, it must have been that I experienced blood pressure or balance issues and they happened so quickly that I fell relaxed and remarkably did not seriously injure myself with them. My new country doctor never did know what to make of them and fortunately like everything else about this illness, they came and went and we continued spending the summer painting rooms and planting a garden, which has been the subject of previous blogs. (Everyone Needs a Farm)
                                        
I was still chronically tired, but fortunately my country doctor  knew a lot about my most recent diagnosis of Chronic Fatigue/ Fibromyalgia. It was known as CFIDS for short which stood for Chronic Fatigue and Immune Dysfunction Syndrome. I had suspected that my bizarre symptoms would add up to something that medicine would one day be able to explain.  My mysterious illness now had a name, though explanations weren't so easy to come by and a cure was even more elusive..

Our new doctors were encouraging as they didn't seem to be fazed by our health issues.  Even the kid's pediatrician in nearby Middlebury seemed familiar and comfortable with my youngest daughter's severe Pectus Excavatum (indented breast bone birth defect) and the extra krink in her bowel that caused severe constipation issues since birth. Country doctors seemed to be "common-sense sort of doctors", practical, accepting and pleasant. Our pediatrician smiled as he warned us to expect dramatic physical changes when my youngest daughter hit adolescence as she would look more developed than usual as her chest was so inwardly concaved. The digestive issues and other health issues were just a matter of taking them one by one. More fiber, more fluids and we were advised to be flexible about her eating habits as she would regulate what she ate according to how well her bowels were moving. My doctor came with expertise about CFIDS, for he himself suffered with it and moved to the country just as we had done to decrease the stress of his life as well. This was reassurance that we had made the right choice.

We didn't miss the city, except for our family and friends left behind in Denver, and country life had many unexpected pleasures. Wild animal life abounded right outside our farm house and even moved into its walls in the winter. A school teaching job fell into place for me and all was well.  Nirvana, we thought, was achieved and it would only be a matter of time before my health would be normalized with our new stress-free life (or NOT?). (to be continued...)

The illustration above is done by Hannah McMillen and the figure drawing by Sarah Kate McMillen.

(*Caution: These blogs are not meant to be actual medical advice but rather meant only to empower others to face medical issues as equal partners with their medical providers and never give up questioning and exploring what alternatives may be available for conquering their illnesses.  Living life with a chronic illness is a daily challenge and it is my prayer that no one give up on living their life to the fullest extent possible.)

Part Five: Living with Chronic Lyme Disease: a long and difficult journey

Part Five: Major Life Style Changes—More or Less Stress?

My job as a special educational consultant in a large suburban school district was a stressful position, especially with my health being so compromised. Added to these stresses were those of my husband’s job lay-off as well as living in a city where cross-busing children to provide for racial balance in the schools made us think twice about our life style. A stabbing across the street and being shot at while strolling on a bicycle path pushed us over the edge. We considered a major move across country to the rural life of Vermont. If stress was increasing my health issues, perhaps decreasing my stress would improve it.

We had visited Vermont during a summer break following my husband lay-off and traveled with a camper, so as to take our beds with us.  We stopped to see relatives along the way, including a cousin in Vermont while on route to my husband’s homeland of Massachusetts. Vermont, we decided would be "the solution" to our problems and give us the peacefulness and tranquility of a more rural setting and would help me to regain my health.  A job offer in Vermont was not to come for several years but when it did come, we didn't hesitate to jump on it.

Decreasing our stress did, however, mean that my husband moved ahead of the family by six months, leaving me behind with two kids to care for, along with working  full time, as well as the job of packing us to move after my daughter and I finished the school year.

All was falling into place or so we thought, until my husband left town.  The deal on the house fell through, and being so desperate to sell and continue with our plans of moving to Vermont, I decided to sell the house myself and did so more aggressively than our realtor. Of course showing the house and selling it on top of everything else was enough stress for the most normal of people and I was anything but.

I learned to pray my way through most days and nights and my oldest daughter grew up too quickly being my right-hand helper in early grade school! I don’t know what I would have done without her help of watching her little sister as I methodically and systematically packed a few boxes each night before going to bed.

The house was sold and we were packed and ready to move as planned in June of 1990, when my husband returned to move us via a U-Haul truck with a trailer on the back. I followed behind in my VW convertible, loaded to the roof and I remember stopping every few hours for me to nap and giving my husband and kids a chance to stretch.

This move was a growing step for us all! Bursts of creativity came with it! I stepped through the bottom of the back of my car only days before picking up my husband from the airport when he returned to move us. Desperate to keep anyone else from stepping through the hole, I pulled out the strongest pizza pan I had and set it under the back floor mat, spanning the hole.  I thought it a temporary fix and was temporarily safe enough as the hole didn't extend under the seats, but was shocked to see that the car repair man simply bolted it permanently to the bottom!  Our humor and laughs were growing along with our creativity, both invaluable coping skills in the years that followed.

In addition to the hole in the bottom of my car, the starter went out as soon as we left Denver and so we had to park my car on an incline whenever we stopped and my husband had to push it to jump start it all the way to Vermont! Life, we were learning was a series of challenges and creativity and humor added to our ability to cope! (to be continued...)

The illustration above is done by Hannah McMillen and the figure drawing by Sarah Kate McMillen.

(*Caution: These blogs are not meant to be actual medical advice but rather meant only to empower others to face medical issues as equal partners with their medical providers and never give up questioning and exploring what alternatives may be available for conquering their illnesses.  Living life with a chronic illness is a daily challenge and it is my prayer that no one give up on  living their life to the fullest extent possible.)

Part Four: Living with Chronic Lyme Disease: a long and difficult Journey

Part Four: Life Continues and New Problems Arise

As my biological clock was ticking, and my daughter's and my symptoms were abating, we decided to have we had a serious talk with my GYN doctor about having another child. The issues I had during my first pregnancy were frightening and we wanted to better understand what had happened and whether or not having a second child was a safe option.

He assured us that as my symptoms had largely come and gone and with it my first and only serious diagnosis, it was foolish to let a seemingly “fluky health incident” destroy our dreams of a bigger family. This was the advice we wanted to hear and I was soon pregnant with our second child.

This time I took greater care of myself and though I seemed to do better in some ways, my second pregnancy still did not go well.  I "spotted" during the first trimester and my GYN didn't think I would carry my second baby to term. He told me I would likely spontaneously abort her, the way it was going. We were all pleasantly surprised that I did manage to carry her full term. I was more lucky than I realized at the time, as many mothers infected with Lyme Disease cannot. I, of course, still did not know that I had Lyme.

By the end of pregnancy I had experienced carpal tunnel in both of my wrists and after giving birth, I became sick with pneumonia and pleuritis (yet another “itis”).  Still being watched by rheumatologists, the diagnosis that followed was Chronic Fatigue Syndrome/ Fibromyalgia.  There wasn't much known about it at the time, but it legitimized what I was feeling: very tired with pains that would come and go!

As I struggled to adapt to what I thought was to be a chronic state of exhaustion, I used both my skill sets as a nurse and special educator not just to do my job, but to live my life. I became an expert in setting goals and doing small incremental tasks to accomplish them and found ways to become better organized, more efficient, plan ahead in the extreme and when I could, execute everything according to plan. It was my way of compensating for my lack of energy and achieving what I wanted in my life.

My nursing knowledge and skills were also invaluable, for without realizing it, I was constantly evaluating and treating us and only seeing  a doctor when it was absolutely necessary.  Doctors, I learned, didn't seem to provide any real answers to what was happening to me or my kids. It seemed that most often my issues were blamed on this inexplicable illness and I was simply advised to take better care of myself, though I didn't have the energy I needed to work and care for a young child and baby? They didn't seem to understand that however I managed, my exhaustion disrupted any sort of routine or resolve I might have for leading a healthier life.

My second daughter was also colicky, and was born with “benign birth defects”.  We didn't know at the time that she too suffered with Congenital Lyme Disease. Her colic issues were worse than my first daughter's and we nick named her "our cry baby" as her colic lasted six months. Her belly was distended and she suffered severe consitipation that doctors thought was due to an extra crink in her bowel.

We were led to believe that her Pectus Excavatum, although rather extreme, was a benign condition. This is a birth defect where the end of the breast bone is indented.  Sometimes heart issues accompany this deformity, but luckily not in her case.  We weren't done with the issues that her Pectus Excavatum caused, though we didn't know it at the time and were given many years before we had to revisit it.

Life wasn't getting easier! We didn't understand at the time just how ill I was and that we were raising two children that were equally as ill. I did master the art of compensating which meant that I was the only one in my neighborhood to have my holiday shopping done, along with my Christmas cards ready for mailing before I returned to my school job every fall, for I knew I would likely be so exhausted by December vacation, that I would be ill and spend much of my vacation in bed recovering before starting the second school term after which I would crash again.

I called after-school time with my kids parties which meant my oldest would run for the crackers, while I got the games and books and headed for bed. I had to go horizontal after a day of work. We even got a bigger bed. All Martha Stewart ideals of home-making were adjusted as well. Casseroles and home-made TV dinners were made and frozen on the weekends and simply popped into the oven each evening. Our life schedules were altered to meet the demands of raising kids and working a full time job that exceeded my physical energy.

Our family roles were flexible and accommodated the demands that our illness was causing. We simply did as we needed to do to keep up with raising our kids and working, and could only wonder why others doing the same were not so stressed.  My husband’s evenings were spent doing laundry and household tasks, while I took the children to bed with me right after dinner.  I read to them until I fell asleep, and then the oldest would get her dad to tuck her and her sister into bed.

At the same time we felt so stretched, little help was available from our extended families, as my husband's parents lived out of town and  my parents were struggling to deal with the return home of my younger brother who was suffering from a serious atypical MS that would kill him eight years later. My doctors speculated later that his Multiple Sclerosis was possibly lyme-related. My younger sister suffered with drug addiction problems. Her drug of choice seemed to be "speed", likely self-medicating through similar issues with fatigue as I was having, though not perceived that way at the time. As I was putting up meals for our family on most weekends, I took to putting up special meals for my brother and would offer support as I could for medical emmergencies that my parents struggled to know how to handle. We were all on overload!

Paying for child care while we worked was no small expense, and while we moaned about the stress, we were grateful to our wonderful neighbors across the street who would occasionally take the kids so Tom and I could have a couple of hours to ourselves to grab a quick hamburger out. As one of my favorite authors wrote in her book, The Hiding Place, "this was but preparation of what was to come." (to be continued....)

The illustration above is done by Hannah McMillen and the figure drawing by Sarah Kate McMillen.

(*Caution: These blogs are not meant to be actual medical advice but rather meant only to empower others to face medical issues as equal partners with their medical providers and never give up questioning and exploring what alternatives may be available for conquering their illnesses.  Living life with a chronic illness is a daily challenge and it is my prayer that no one give-up on living their life to the fullest extent possible.)

Part Three: Living with Chronic Lyme Disease: a long and difficult Journey

Part Three: My Symptoms Increase and More Challenges Ensue

Although my symptoms and complaints increased they were often discounted by my doctors or worse, were attributed to anxiety, or even being a hypochondriac. This is not uncommon to those who have invisible and undiagnosed illnesses. Lyme often produces strange, inexplicable symptoms that come and go and leave doctors perplexed. What cannot be explained is often attributed to having a psychological basis.

There was good reason for my concerns, as well as the anxiety that accompanied them. If inflammation is enough to be systemic, the brain will also experience inflammation and cause anxiety. I was more than willing to to seek psych support as I knew that I needed help, though I didn't understand, nor did my doctors that many of my issues really could not be helped with counseling. My symptoms still weren't being recognized as being connected to the serious infection raging in my body and brain.

I learned in my nursing school days that the name of any bodily organ with “itis” at the end means “inflammation of” and my list of "seemingly acute illnesses" ending in “itis” grew longer through my twenties and then into my thirties. Along with my many “itises” I also went on to have heart irregularity that stymied cardiac specialists. Doctors noted that this irregularity was fortunately benign, not life threatening. This was just yet another of many documented and seemingly random bizarre symptoms.  I later learned that Lyme is a disease that causes inflammation as well as heart irregularity, which for some can, indeed, be life threatening.

When I became pregnant at age thirty-five, my symptoms finally got the attention they deserved from medical specialists. Pregnancy can further tax a body that is already stressed with an underlying disease process, causing symptoms to worsen.  For me, it was a time of fevers, joint instability, allergic reactions, and skin break outs as never seen before.

It should not surprise me that my first serious diagnosis, albeit a false one, came right after I delivered my first child. Serious back and joint issues ensued and with them more abnormal lab results. Systemic Lupus, an autoimmune disease, was the suspected cause.

I couldn't lift my baby without serious pain and my neighbor had to help me lift her in and out of her car seat when I went back to work. Breast feeding did not go well.  My daughter was colicky and had on-going ear infections.  Pink liquid bubblegum Amoxicillin seemed to be a daily supplement to the usual infant feeding regimen.  I was not a glowing mother, nor was my baby easily contented. Twenty-one years later we would learn that she had been born with Congenital Lyme Disease. Lyme we learned could be passed from an infected mother to her child in utero. We didn't realize that our baby's health issues as well as mine were Lyme Disease induced. We just knew that life was a lot harder and we didn't seem to be like other young parents with their first-born children.

A colicky baby is enough to stress any parent, new or experienced, and we struggled to cope.  Being too tired or too stressed, became our way of life and by the time she was off to kindergarten, we had mostly acclimated to our new "norm" and our symptoms seemed to have abated a bit.  My diagnosis of Systemic Lupus was rescinded by my doctors, though Chronic Lyme Disease had yet to be diagnosed.

I had surgery to repair a badly damaged ligament in my left ankle and still wore ankle splints on both ankles under my socks, to prevent my ankles from turning at the slightest irregularity in the ground surface. I didn't know it then, but I was not only experiencing joint instability problems but neurological issues as well.  My proprioception was altered and I didn't know exactly where my feet were in relation to the ground.  I exchanged beauty for function by wearing “sensible, broad-based flat shoes", that would not easily turn, keeping me safer and preventing further injury! My husband and I were altering our dreams, and adjusting to the new realities of what we thought were random health problems for both me and my child. (to be continued.)

The illustration above is done by Hannah McMillen and the figure drawing by Sarah Kate McMillen.

(*Caution: These blogs are not meant to be actual medical advice but rather meant only to empower others to face medical issues as equal partners with their medical providers and never give up questioning and exploring what alternatives may be available for conquering their illnesses.  Living life with a chronic illness is a daily challenge and it is my prayer that no one give-up on living their life to the fullest extent possible.)

Part Two: Living with Chronic Lyme Disease: a long and difficult journey

Part Two: Abnormal Findings, but Not Considered Significant

Lyme disease is caused by Lyme Bacteria, Borrelia burgdorferi that is often, but not always transmitted to people through a tick or other insect bite. Lyme bacteria takes different forms, but often it is the spirochete form that first penetrates and infects human cells. Spirochetes have life cycles and so I erroneously reasoned that if my symptoms were cyclic, they must be related to the only cycle I knew I had, though sometimes the pattern of feeling good or bad did not seem to coincide with my female hormone cycle.

My hormones were raging and tumultuous at best and with them my menstrual cycles very hard and painful. My girlfriend in college used to laugh and tease me, asking how many days before or after my period, as I blamed everything on them, not knowing that I was in fact harboring spirochetes whose life cycle were truly making cycles of varied states of well-being in my body.

My validation for spirochetes being present in my young adult years, came when I had a false positive syphilis test during a physical when I went to work in a California hospital after my second year of college during my summer break. Apparently a VDRL test was done routinely for employee physicals and the results of mine came back positive. I was clueless, when they asked for ”my contacts”, I thought they meant the ones in my eyes.

It only took a brief examination to confirm that I was indeed a virgin and that naive! The doctor didn’t see then that fatigue, and achy joints along with this false positive test could be significant, though perhaps to gain employment I failed to mention my complaints. Syphilis is a spirochete, similar to the Lyme spirochete and hence showed a false positive VD test.  I also didn’t know, and neither do many doctors that women with Lyme have unusually hard and painful menstrual cycles with exaggerated PMS.

As my symptoms often came and went, I was optimistically fooled as many are, that I simply suffered from different acute and short term illnesses.  One doctor even thought that I was ill more often simply because I was a nurse and exposed to more “bugs”.  At the time this made perfect sense, though as a child I was never sick, and my peers weren't experiencing the same struggle with their health as they practiced nursing.

After college,I thought perhaps my fatigue was related to shift work, which didn't agree with my body. As a newborn nurse, we would often donate blood to assure that our tiny patients received only blood from healthy subjects. Mine was tested and not acceptable due to a positive CID Titer (Cytomegalic Inclusion Disease), another sign that all was not well within, though I didn't feel ill most of the time. I reported this finding to my doctor, but again he had no answer for me. He felt, no treatment was needed, as to him I appeared nothing less than a healthy young woman.  Lyme Disease, I have since learned, mimics many different illnesses and so it is not surprising that my doctors were as fooled, as I was.

I knew nothing of Lyme Disease and even if I had, I wouldn't have given it a second thought. I had never been bitten by a tick or experienced a bull’s-eye rash and my come-and-go-symptoms fit most common acute  illnesses.  I have since learned that many stricken with Lyme don’t recollect having a tick bite or any sort of rash, much less the hallmark symptom of a bulls-eye rash. Rashes can also go unnoticed if they are in an area that is hard to see. I did grow up in the era of Hair and had sufficient hair on my head to cover most of my body. (to be continued...)

(The illustration above is done by Hannah McMillen; figure drawing by Sarah Kate McMillen)

(*Caution: These blogs are not meant to be actual medical advice but rather meant only to empower others to face medical issues as equal partners with their medical providers and never give up questioning and exploring what alternatives may be available for conquering their illnesses.  Living life with a chronic illness is a daily challenge and it is my prayer that no one give up on living their life to the fullest extent possible.)

Part One: Living with Chronic Lyme Disease: a long and difficult journey

Doctors are Clueless and So Am I 

I have had Lyme Disease for what seems like forever. I figured that it has been about forty eight years which equals approximately 2,496 weeks, which is getting very close to forever! My symptoms started when I first went away to college. Overwhelming fatigue and joint aches were my complaints, but then I was “burning the candle at both ends” and worked in a kitchen carrying heavy stacks of plates and partied and studied into the wee hours of the morning, so who wouldn't be tired, or have achy hands?

I lived in Colorado and I knew that ticks carried Rocky Mountain Spotted Fever.  Lyme wasn't even a consideration by my doctors or me. Lyme Disease was not a reality for most in the sixties, though it did exist, and was even tested from a prehistoric corpse found not long ago. To date there are no tick fences that have kept it from being everywhere, albeit its prevelence is greater in some areas than others. I just read that currently Vermont ranks second state in the US for highest prevalence of this disease, though I believe that it came with me when I moved from Colorado to Vermont over twenty years ago now.

When I sought early medical treatment, I was told that I needed more exercise, never mind that I had no car and walked everywhere!  More medical advice in the ensuing years seemed equally as useless: perhaps I had just overdone it; needed to have a better diet; or perhaps I was depressed and didn’t know it.  I did know that I ran short of the energy I needed to live my life fully and all medical advice focused on what I needed to do differently, though I appeared to be a healthy specimen, not unlike my peers (appearances deceive many, I have learned, especially doctors).

I heeded my doctor’s well-intended advice, as any young adult would. I simply carried on, tried to avoid excess, though likely NOT when it came to my passion for sweets or life and occasionally crashed and burned and slept for a day or two at a time and didn't seek more medical advice unless I felt like I couldn't live without it. (to be continued...)

(The illustration above is done by Hannah McMillen; figure drawing by Sarah Kate McMillen)

(*Caution: These blogs are not meant to be actual medical advice but rather meant only to empower others to face medical issues as equal partners with their medical providers and never give up questioning and exploring what alternatives may be available for conquering their illnesses.  Living life with a chronic illness is a daily challenge and it is my prayer that no one give up on living their life to the fullest extent possible.)

Introduction: Living With Chronic Lyme Disease: a long and difficult journey

Doing What I Vowed Not to Do

I have decided to write my own personal story of living with Chronic Lyme Disease.  It is becoming an ever growing passion of mine that Chronic Lyme Disease become officially recognized in the medical community. It is one of the largest growing illnesses of our time, and its chronic form is largely denied by most doctors (ones Lyme patients refer to a non-lyme-literate doctors). I realized how much I needed to write about this when three more of my friends/acquaintances were recently diagnosed and treated for Lyme and still another  goes with no treatment after his parents found yet another tick embedded and his doctors simply want his parents to watch and report any illness that should follow.

None in my family can stay silent when we hear such news, as we personally know that Lyme is a disease that needs to be taken seriously. All of those affected by Lyme, we feel, should be fully informed regarding the status of this disease in the medical community, the different schools of thought regarding treatment and the consequences of not treating it sufficiently. Sadly, some will not want to be informed, though I respect their choice.

I feel sick inside when I hear of so many acquiring this illness, though I forget that for them it may be different.  Perhaps they will be one of the lucky ones that get adequate treatment in time so they will not experience the long term effects of this dreadful illness.  I was not so lucky.

I vowed when I started my blog, not to write about Lyme, politics or religion but I have decided to break this vow.  I am going to tell my story, including the politics surrounding this illness and the faith that keeps me going.  It will be a series of seventeen blogs for those that are interested and I will post them in between my regular home arts blogs.

My intent is not to scare anyone. I will merely tell my story of living with Chronic Lyme Disease.  I consider living with this disease to perhaps be the single most creative accomplishment in my life and perhaps telling my story of going too many years without a proper diagnosis, will prevent someone else from doing the same and avert the struggle that I have lived. Knowledge is powerful and I often wish I knew then what I know now.

I believe that it is a story of hope for whether you are dealing with this illness or another, there is much to be learned spiritually, mentally and physically from dealing with something bigger than oneself. There are many ways to live life to its fullest despite limitations, and I hope that my story will encourage others to do the same or perhaps be of support to those who find themselves in a similar struggle.  For Chronic Lyme Disease patients, this is actually not an uncommon story.

I have intentionally broken up my story into short readings. It is a telling of facts, as best I remember them. I have attempted to cut out the extra drama and complaints, though to be sure, as I struggle with this disease  I have and continue to live with plenty of both. I believe that long term treatment aimed at the cause of the disease rather than its symptoms has enabled me to greatly reduce, if not eliminate many of my symptoms and has increased my hope of arresting this disease once and for all. (to be continued....)

(The illustration above is done by Hannah McMillen; figure drawing by Sarah Kate McMillen)

(*Caution: These blogs are not meant to be actual medical advice but rather meant only to empower others to face medical issues as equal partners with their medical providers and never give up questioning and exploring what alternatives may be available for conquering any illness.  Living life with a chronic illness is a daily challenge and it is my prayer that no one give up on living their life to the fullest extent possible.)