Date sent: Tue, 28 Jan 1999 23:05:45 -0500
Subject: Spirit of Health
I started an update a month ago then stopped. Now I'm ready to finish it.
I look at my children - Zachary will be 9 in 4 weeks, Hana will be 5 in a few months -
and think, 'they are not babies anymore.' I met a couple my age yesterday with a 2 year
old and that's when it really hit home. While I've been living day-to-day, my family is
growing up around me. More about this after earlier thoughts….
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(December)….
Moved to write. Months ago I was getting off of Klonopin thinking it wasn't helping me.
Now I am taking more than I was before and still have about one small seizure per day.
Waiting.
I feel myself waiting for 'something' better. I'm participating in life and
yet….yet my boat is not very big and I still don't see land.
As I laid down for one of my naps, for some reason the thought ran though my head - you
know you just turned 35 not 25. Abi and went to talk to a Family Health class at WSU about
our experience and reflected that we're going on 3 1/2 years since my tumor was
discovered.
I'm looking over at a picture of Zachary reading to me. A birthday gift. It's very
beautiful.
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The short of it:
Healthwise I am pretty steady state. I am taking about the same drugs I was taking in
March. But now I have one seizure a day where I need to sit and concentrate for a minute
or two. Then I can go on.
This has made it a lot easier to participate at work and in activities in general
because my seizures are more predictable and generally more controlled.
I am wrestling with some of the side effects like some short-term memory loss and a
very flat mood. Also, now my seizures are triggered by vigorous activity.
Throughout this journey, it has always been a balancing act. What I get verses the side
effects. And sometimes the trade-offs are not reversible.
(end December…)
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Just a few weeks ago, I reduced my Lamictol (the only drug I have not changed) and it
has helped my speech and sluggishness some….
Before I leave the stability thought - I have been so much happier since my last
update. Just being able to sit through meetings and not feel 'on the edge.' Being able to
go to meeting in the evening without feeling threatened. Even my one seizure a day is
usually between 4-6 pm. Predictability really has allowed me freedom to do some things I'd
never even consider before.
I when on a plane to NYC to see my grand father for his birthday. Never would have
considered that. Never.
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So, here I am. 25.
NO.
35.
With an 8 year old and a 4 year old.
I am in the same place with Abi that I am with the kids. Time. Years. Direction.
Life is a paradox…..
Be well.
Love to each of you…..
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