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.)