It's all in my head

It was the start of an awkward 60 min. and no one wanted it to end after 3 seconds, more than me.

My doctor came in the exam room and clearly, the MRI was structurally normal.  He knew, as well as I knew, that just about any horrible thing would have been better to explain away, than the fact that I have a perfectly, normal looking brain.

It was so painful watching him search for a neutral way to say, "It's all in your head."

He is such a great doctor and has always been one of my favorites.  He left his practice back in the early 2000's to take various positions at the hospital and University but he recently came back to family practice. I chose him to talk to about my memory problems and such, because he was there when Shelbie had her first seizure.  He was the one to diagnose her with ITP.  He was the one who discovered she had Hashimotos Disease when she was 5 years old and suicidal.  He was the one who did the spinal tap on Spencer when he was 8 and ultimately life flighted him to Boise.  He was there for Sam's birth, his failure to thrive...He was always there.  He was there when we got the news that the kids had...what they thought at the time, was Shwachman Diamond Syndrome.  He has watched me slide down the wall at the hospital, in complete hysterics, when he told me the worst news of my life.

And...I was there for his family when his young daughter was hit by a car.  I designed his clinic when he opened his own practice.  We have just always had this connection of trust and caring.

I tried to spare him and boldly announce, "You don't have to sugar coat it.  I know, I'm crazy.  It's all in my head. I knew that in my gut."

"You aren't crazy.  I know you aren't crazy." was his response. He was kind enough to visit with me for well over an hour.  In fact, the nurses were locking up the building and didn't realize he or I were still in the exam room.

He offered me a first aid kit of pharmaceuticals but I graciously declined.  Medication isn't going to change my environment.  Medication isn't going to change my past or my present or guarantee a smoother future. Medication will only mask and numb the underlying causes, but do nothing to change it. 

I have spent weeks researching in every spare moment about the effects of caregiving, trauma, and PTSD.  They actually have a name for what I have...Complex Trauma.  PTSD is typically an event; a horrific accident, a military event, a sudden death...it can be anything really but a period of time when the event began and the event had a definite ending.  Complex Trauma differs in that the traumatic events are constant and varied.

When experiencing a traumatic event, it has been shown, over and over through functional MRI's that the entire left side of the brain goes offline.  The left side of the brain is your verbal center, organization of experiences, memory, executive function.   There is another part of the brain called the Brodmann's Area 19.  Anytime a traumatic event is remembered, spoken about, triggered, this area becomes activated and rekindles the emotional brain, as if you are experiencing the traumatic event for the first time, completely unmodified by the passage of time.

With each triggered moment, the stress hormones react, the left side of the brain goes offline, memory is disrupted, organization, sequencing and attention are all affected negatively.

As time goes on, the body registers a threat but their conscious mind goes on as if nothing is happening but the emotional brain is already alarmed and shutting down and splitting off.   What happens next...the world is now seen with a completely different nervous system and you will never be the same.

And this is the side effect of caring for chronically ill children.  The effects that no one wants to talk about.  The effects that make you feel scared and crazy and so very tired.

So, I'm really looking forward to Monday and Tuesday when I get to go to Salt Lake again.  Spencer is having surgery on Monday morning to remove the loop recorder sitting above his heart.  Tuesday, we meet our new Complex Care doctor to see if there is anyway they can re-route her lymphatic fluids and get some better blood flow and circulation to her poor leg.

So, the good news is, it's all in my head.  The bad news is...it's all in my head.  I'm not really sure how to fix this but I'm certainly going to figure it out.  In the past 24 hours, I have heard 3 stories of crippling anxiety from fellow moms of chronically ill children.  They have bravely told the tale of their own irrational thoughts and crazy making we become plagued with.   There is so much shame and guilt, it's a terrible thing to admit but so devastating.


Comments

  1. You are a hero. My hero and their hero. There has to be a solution.

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