Wednesday, October 2, 2013

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

Part Nine: Life Continues and With It Still More Stress

You know what they say, “if you want to get a job done, find a busy person" or, in our case, persons.  Well that was us and so in 1990 we took on the care of my mother and moved her here from Colorado.   Already stretched but with much compassion for my dear mother in need, what else could we do?

My sister had issues and was unable to offer enough support, and my older brother was busy raising his children as a single parent and could only offer her a spot in the nearest senior care center, so we took her “in” and her care “on”, moving her into our house for four months while we had her house repaired and fixed to sell in Denver and then she purchased the house next door to us. Her cross-country move ensued, all facilitated by my husband’s sister, may she now be crowned with jewels in heaven for this gift to us.

I was realistic that my mother had to live very close in order for me to manage her, my own care, work part time and care for my family too. It happened and the rest is history.  It was another decision that I will never regret, though it stretched our already too stretched family even thinner and made for many wrinkles that took much time to iron out. We learned that love has its own rewards and the increase in responsibilities taught us lessons for what was yet to come.  Roles got redefined again, and we all grew to take on what we felt was important to do.

This stress was not the only one however.  My youngest daughter’s benign Pectus Excavatum took on a life of its own and indeed her pediatrician had been right!  Her development was dramatic in ways that we had not expected. Her indented breast bone grew further inward leaving her only a few inches of space between her breast bone and spine. Her heart, to keep from being crushed, moved over to accommodate the crowding in her chest. This change was caught on camp physicals from one year to the next and by our GP, who was a heart specialist as well.There are many miracles in our journey and this was one of them!

No doctor had told us about this possible complication of her “benign” Pectus and I longed for city life and the vast array of medical specialists to face this problem.  After consulting with pediatric chest surgeons in a major medical facility a couple of hours away, it was decided that there was no guarantee about the results of a very invasive surgical corrective procedure, and her doctors and us held our breath and patiently watched her continue to grow and monitored her symptoms. Fortunately the worst was past us, and her heart continued to function normally and her lung capacity was miraculously only minimally reduced. Surgery, we decided, was not the best option.

Shortly thereafter I faced my next big health issue: insomnia. My side of the bed was built up with extra egg crate foam mattresses until my side was seven inches taller than my husband’s side.  I felt like the princess and the pea, as my body hurt in all the “touch-point areas” know to fibromyalgia patients.  Pain made getting restful sleep a challenge. Sleeplessness added to my chronic fatigue and after a sleep test to document that I was, in fact, getting little deep dream sleep, an anti-snoring mouth appliance was tried.  After biting through the first appliance and getting yet another, my snoring decreased but my sleep didn't increase.

Desperately seeking to feel more rested, I decided to try a holistic sort of doctor that I had heard good things about. She was a bit "out of the mainstream" and a licensed Nutritionist and Herbalist as well. She immediately voiced her suspicions of Lyme Disease, but decided to see if a strict diet and supplements would be enough to improve my condition. Dysbiosis and gastrointestinal issues followed the many antibiotics used to treat my bladder infections, wiping out the normal bacterial flora in my gut. This was to be a diet like I had never known before.  I eliminated sugar, wheat, milk, caffeine, all additives, and sugar substitutes and any alcohol including alcohol based flavorings. She then added enzymes and supplements. This frequently meant double meal preparation, but was worth it as I felt much improved!

Life was more challenging than ever before, with so much focus on my mother, our youngest child's chest condition, as well as my issues, but we were growing in our ability to deal with the difficult.  In the middle of this our oldest daughter took her turn at the limelight and had the worst ear infection her doctor had ever seen,causing scaring that permanently damaged her hearing in that ear. (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.)