Subject: Dan's update - take September 96
Date sent: Sat, 21 Sep 1996 12:57:39 EST

I don't know where to begin.

After increasing my Tegretal dosage from 800 to 1300 mg/day, I
have finally begun to feel human. Though - I'm sensing 'human'
is relative. For the last two weeks I have worked all morning,
then come home, eat, sleep, work some from home. Before bed,
I've even shot basketball with our neighbor. Human means I'm not
examining every sensation and feeling neurologically unstable.
Human is living a protected life - I'm not driving and not
spending too much time with the kids alone. Human is recovering,
praying for a better tomorrow/next week. Human is always
wondering 'will it get better than this?'

Quick hit on the doctors - We have chosen to go with Dr.
Venkatesh. The one covered by our insurance. At first we did
not like her, and did like Dr. Brown. I communicated with both
of them as I tried to get 'human.' When I was still feeling not
okay, Dr. Brown said my blood test was 'perfect.' We were not
satisfied! Dr. V had predicted I would need to be in the higher
range of this medicine because I did not get coverage at the high
end of the last medicine (the reason we switched). So, we saw
Dr. V again and felt much better about her. Told Dr. Brown
thanks, but....

--------------

Changing medicines and this entire transition has been THE most
difficult thing I've ever experienced. The surgery was easy by
comparison.

With the surgery, most things were known. I'd have the surgery,
they'd take out the tumor, and I'd have about 4 to 6 weeks of
recovery before I could go back to work. I had no more seizures
so I could drive. I started 1/2 time and worked what I could. I
got a little better each week. When a month past, I could look
back and say -'boy I'm much better than I was then.'

Not so now. I had full-body seizures at the beginning of July.
It took a week of simple seizures to get them under control. Am
I better than I was almost THREE months ago? Yeah, some.
Weekly, I have felt better, then worse, then better, then worse.

But not being BETTER yet is very difficult.

I'm also facing a deep terror of being alone. I've always
feared being alone. Seizures have magnified my fear - and the
anxiety makes me feel more 'pre-seizureish.' Vicious circle.

With medicine changes, I spent several days in August in bed,
completely wiped out. Imagine having very low energy, your
entire body aching, and being scared/lonely/unhappily/oh when
with this ever end.

Abi and the kids have their own lives and often aren't home in
the afternoon when I sleep or work. I've been thinking that at
some level I do have to live with my 'seizure potential' alone.
It is a part of me.

All of this is why the surgery was easier. Also, people
expected me to be 'sick' and getting better. Now people don't
know what to expect. Abi asked me when I'd be working full-time
again (money planning). I said I don't know. She said well do
you think it will be in November, or December? I said I don't
know.

Don't know.

That is a difficult concept.

At work, I was moved from the computer area to Human Resources
because the president thought I was too stressed in the IS area.
I did not want to move, so I was even more stressed....I'm
getting used to the idea and I just did not have the energy to
fight the idea. I am also a very valuable resource to the IS
area, so I'm not sure if I'll be doing no IS work or what. Malte
wants me to help create our new training center that will also
have a lot of Information Technology stuff.

I'm seeking physiological support through our EAP and he is
searching for an appropriate source. Someone that knows
something about my 'condition' and medicines.

When I saw our holistic healer, he said I need connect with my
heart to help my head heal. He mentioned I am very good at using
my head, now I need some balance. I've been thinking about that
- notice 'thinking.' My heart is very warm and strong...I've
been reaching some and it feels good.

---------

My children have been wonderful. Especially Zachary. He meets
me at my level. If I'm in bed, he comes and snuggles me in bed.
He wants time with me every day and adapts. Hana is a beautiful
joy. She has adapted by often turning to me and say 'daddy,
okay?' and visiting me when I'm resting.

---------

So, all of the above is what has been. Recently I am feeling
'human' again and liking it. The Jewish new year just past. May
we all have an amazing new year!

Love,

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