Thursday, September 26, 2013

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.)