Tuesday, September 17, 2013

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.)