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The Beginning, Again

A reflective telling of the beginning of my family’s long journey through chronic illness, uncertainty, and unwavering love.

And here we go again.

I sat and stared at the blank page wondering to myself “Where do I begin…. again?” Do I start at present time with the latest ambulance rides and hospital stays or do I go back in time to symptom onset?

Common sense tells me the best place to start is always the beginning.

It was my daughter’s summer vacation between first and second grade. She had an energy and vibrancy that was hard to keep up with and could light up any room. She had more friends than she knew how to fit into a summer calendar. None of whom she knows any longer. Strange symptoms make estranged friends.

We had some time off and decided to pack up the car and head to Ocean City, Maryland. All we wanted was family time, ocean waves, and memories. Well, we certainly got the memories.

One rainy afternoon, while driving away from the beach, a sudden and rapid movement caught my eye from the backseat. “Something is wrong Momma”, my son said. I looked back and saw my daughter, buckled safely into her car seat violently whipping her head. I reached to her and she grabbed my hand as we made eye contact. All I could see was the fear in her eyes. I found myself speechless and all this sweet baby could muster was “I can’t stop.”

We immediately pulled over and I grabbed my little angel out of her car seat and I held her tightly to me. She wrapped her little arms and legs around me like a scared baby koala and as we stood on side of the road in the rain, I could feel her warm little breath on my neck start to relax. I could feel her soften in my arms and could feel her heartbeat slow. She settled down while we stood there and I started to think maybe what I thought I saw wasn’t what I saw. Any mother knows what I am talking about; that chronic second guessing we do to ourselves. Until we know better.

Sitting here writing this, remembering that moment that changed our lives almost two decades ago has made me break out into that familiar cold sweat that I have experienced hundreds of times over the years since then. That sick feeling in the pit of my stomach and the wave of chills that reaches my soul. The tears that fill my eyes uncontrollably. It is a fear of the unknown. A fear of lack of control. It is a fear of sickness and disease in my child. It is navigating a storm without a compass. It is eventually learning this will be a lifelong battle of searching and advocating and asking for things that the medical community denies exists and I will stand beside my daughter and wield a sword until my dying breath.

She never deserved this. We never deserved this. Yet here we are. Still fighting the fight. Again and again.

Never Ending Journey

A personal story of Borrelia miyamotoi, symptom relapse, and the many challenges faced by patients and families living with tick-borne disease.

The frustration of Borrelia miyamotoi. Round and round we go. We thought things were going great, and on the outside they were. We had no idea what was happening on the inside. After years of what appeared to be remission from life-altering Borrelia miyamotoi, we are once again dealing with severe symptoms. The original blog was stopped because, hanging onto anything that helped, I didn’t want to jinx us. She was doing great! Why tempt fate? The journey had seemed to end. How naive of me.

Before I go any further, allow me to clarify. My daughter, now 23, is in the throes once again of multiple ambulances, emergency rooms, hospital admissions, and every specialist under the sun. Once again, the majority of specialists attribute her symptoms to anxiety. As a parent, when asked, trying to explain to these doctors that there is obviously a component of anxiety in this, though it is a normal level for what my daughter is experiencing, they grab onto that statement as if their lives depend on it and type it out in her visit summary and send her on her way. Trying to explain that she feels as if her body and mind are out of control and never knows when/if another convulsive episode will occur which is triggering her anxiety falls on deaf ears repeatedly. Why is this so difficult for the medical community to comprehend?

The frustration felt by both parent and patient is real. As I sat in the hospital trying to explain the difference between Borrelia miyamotoi and Borrelia burgdorferi for the umpteenth time (because the wrong test was run) to the umpteenth physician I can feel my annoyance teetering on rage. I have gone there and have told some doctors “Go do some research,” and “I’m not here to teach YOU,” but upon thinking about that, maybe I am. Maybe I am just that person to teach. Maybe sharing this desperate journey will teach someone what to look for, even if it’s only one specialist or doctor. I’m just tired. I’m beaten down. I’m an empty skin suit of a desperate parent trying to get through another doctor visit on nothing but hope.

So, once again, this is my blog. New and improved. I will be posting the old blog posts to show the past symptoms and struggles and visits and labs and tests and sleepless nights. I am hoping this touches someone enough to want to understand the differences between all of these tick-borne coinfections and what they do to a human being and the people that love them.

This is a story of undying love and devotion. This is a story about a search for support and answers. This is my story.