I've added a few new people to my list - so for orientation....
I've been keeping an e-mail journal of my feelings and thoughts
since my March 1995 brain tumor diagnosis. This is probably
update #15 or something. It helps me think and to share some of
my thoughts we a lot of my friends and loved ones. Onward.
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I've been avoiding writing this update. I've been waiting for my
feelings about my health to improve. I've been waiting to have a
lot more energy. I've been waiting to be moved to write. I've
been waiting…..
Waiting has been one of the themes of the past 8 months. I've
been exploring new depths of patience. I've also been living at
a very base level. Abi was surprised the other day to find out
my goal now is not to 'return to work full time.' My goal is to
live days with energy, conviction and comfort. Then I'll think
about work, etc.
Maybe they are related….I'm not sure.
I considered going on Short-Term Disability at the end of 96
because YSI asked me to do that or change to part-time status. I
thought hard about this because now if I go on STD I get 60% of
25 hours/week pay and I thoughts the time off might be helpful. I
choose to keep working.
Anyway - a weather report:
In Dec. I started to see Dr. Layne Moore at OSU who specializes
in epilepsy. Abi and I like him a lot. He confirmed my 'spells'
are 'complex-partial' seizures (as we thought) and believed us
right away when we said the meds I was taking were not working.
He also said complex-partial seizures are the hardest to control
and that he thought it would be possible, but he did not know how
long it would take.
I started a new medication called Lamitcol and have ramped up
since then. Lamitcol is definitely making a difference. Even
though I've had 3 seizures since Jan 1, they have been much less
frightening and my recovery has been in hours instead of days.
This is very good news! Two things are still bothering me, 1 -
I'm still having seizures and 2 - I'm now taking 3 drugs daily.
The goal is to stop my seizures and then to get me off the
Klonipin, in that order. Even two seizures a year, he reminded
us, will keep me from driving. He said he thought I was 'close'
to getting seizure control.
In the mean time, I wait. I have good hours and difficult hours.
Meeting with people one on one is very tiring. A 1 hour meeting
is about my limit. Group meetings are also a drain. I like to
keep doing different things and eating a lot. The computer is
some times tiring as well.
I'm at work 3 hours each morning and will eat a banana, peanut
butter crackers, an apple, a PPJ sandwich and maybe a cookie
before getting home - all to keep my blood sugar up and to try to
feel 'okay.'
Then I find someone to drive me home (2 miles away); eat lunch,
relax and got to sleep for an hour or two.
I feel better in the afternoon at home and the evening is
unpredictable. Kids to bed and I'm laying down by 9pm.
Then I do it again tomorrow.
My 2 year surgery anniversary is at the end of the month, so I'll
get another MRI and see the surgeon and Dr. Moore as well.
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I do see a positive trend. The Lamitcol has given me more 'good
times.' Some hours I feel GOOD. This is a big change from a few
months ago.
Patience, waiting, uncertainty…..
I pray at night and am thankful for my health, my family, my
work, all the help from our families, my community and love.
Often I add the serenity prayer.
Abi had surgery for uterine prolapse two weeks ago and I got to
see the hospital experience from the care giver's perspective.
Not pretty. And it gave me some healing to see what happened to
me two years ago watching her. She also gained some
understanding from my perspective.
We've started participating in the Exceptional Patients support
group again. I find it life affirming to see we are not the only
ones struggling and people do persevere.
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Finally, I continue to think about my insight from pull-ups….I
can struggle and fight my way through it/life. Or I can 'flow'
with it. My end point is very similar, but my experience is very
different.
I feel the pearl in this idea. I experience it exercising. I
have trouble with it day to day.
So I wait….for the promise of better times.
I know I shouldn't. I know I 'should' seize the day (no pun
intended).
And - this is where I am anyway.
Thanks for thinking about me and us.
With great love,
Dan