There is a delicate balance in our life of ups and downs. Of course we strive for the ups and do our best to weather the downs when they happen. The perfect balance is never easy to achieve yet we wake up each day and hope and pray that for just today we get it right.
At the moment our delicate balance is in jeopardy and it absolutely terrifies me. Recently I blogged about our year in hell...a year I was confident we would never have to live through ever again. In the past week my confidence is wavering as we once again begin a major medication change.
Briefly, our year in hell began with the medication Risperidone and a severe side effect called tardive dyskinesia*. In Scotty it manifested itself in an uncontrollable jaw movement that caused him an enormous amount of pain and discomfort. Unbelievably enough that was horrible, but it was not the worst part. The most distressing part came as we tried to take him off the medication he had been on for ten years. He became violent and aggressive and we lost our Scotty for much too long.
Fast forward...new doctor...new medication. Invega...same class of medication as Risperidone...true. Less intense side effect profile...false.
Fast forward...new doctor #2...new medication. Serequel XR...completely different class of medication...true. Very few side effects...to be determined.
So as we add Serequel XR to minimize the horror of coming off the Invega...we wait. And we watch each and every movement he makes... jerky uncontrollable body movements, yelling, pounding the walls, hitting himself in the head, biting his arm, or taking a swing at us...we are constantly looking for any small sign that we are heading for another crisis.
The passage of time has so blessedly dulled the memories and softened the edges of that horrible place where we lived for almost a year.
I guess it is a lot like childbirth...you forget the jerky uncontrolled body movements, you forget the pain, you forget the yelling and the pounding. The passage of time dulls the memories and softens the edges of the actual labor and in its place is just a beautiful memory. Then the first pain hits, the one that takes your breath away and sets every nerve in your body on high alert...the one that makes you pound the nurses call button and scream, I NEED DRUGS! Very quickly the memory sharpens and you remember every single detail.
That is exactly what this feels like. Every yell, bang and hit brings it all right back into focus, and it is terrifying. New doctor #2 has promised us that she won't let that happen again...but no one can predict how his nervous system is going to react.
So every day we wake up and stand above the fulcrum on our teeter totter and using all our strength we try to keep the teetering and tottering to a minimum as we pray for stability and balance.
Therefore do not be anxious about tomorrow,
for tomorrow will be anxious
for itself.
Sufficient for the day is its own trouble.
Matthew 6:34
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Here is a link to the post about our year in hell.
*Tardive dyskinesia is a difficult-to-treat form of dyskinesia a disorder resulting in involuntary, repetitive body movements. In this form of dyskinesia, the involuntary movements are tardive, meaning they have a slow or belated onset. Tardive dyskinesia may persist after withdrawal of the drug for months, years or even permanently. According to a study being done at Yale, the majority of patients will eventually develop the disorder if they remain on the drugs long enough.
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