Take August...PLEASE! <grin>
The last month as been very difficult for me and my family. I
continue to try to find the correct drug/dosage to control my
pre-seizure activity and to find a good doctor, but I'm not there
yet.
First 'the story' summary. I am trying to move from Dilantin to
Tegretal. To do this, I have to slowly reduce the Dilantin (so I
don't induce seizures) and slowly raise the Tegretal (so I don't
get too much). Add to this getting a blood test each week to see
what's happening. I have been doing this and this week I finally
stopped taking Dilantin. I've felt worse ever since. I've been
in bed about half the day for the last 4 days and I've decided to
take some Dilantin again until we get this figured out.
About the doctors: I mentioned before I saw a wonderful doctor
in July that he was ending his practice, so we needed to find
another local doctor. On Dr. Matthews recommendation, we went to
see Dr. Venkatesh first. She is a very nice person, but the
office she works in felt very cold. Since it was a branch
office, they had not received the records we had sent ahead. We
told our story to the nurse. Then the nurse told the story to
the doctor. Then we told our story to the doctor again. I felt
okay about her, but she did not stop to listen to questions
sometimes and Abi and I did not feel comfortable asking many
more.
When we went to setup an appointment to return, there was
nothing available 1 month from now, so they have to fit us in.
We're waiting for that call.
Then we went to Dr. Brown, another suggested neurologist. Abi
liked Dr. Brown's office right away because they ASKED to have
our history sent before we arrived. We signed in and waited.
Then - for the first time in Dayton - we had a problem with using
the HMO. The receptionist came out and said they do not accept
our HMO...that they used to but the doctor did not agree with
HMP's rules on testing, so she had separated from them. We said
we wanted to just consult with her, so we would pay for the
visit.
"Do you want an exam?" she asked. "No," I answered, "I've been
examined enough!"
Well, this time we had to tell our story to a resident who had
ALREADY read my history (imagine that). Then we talked to Dr.
Brown who had also already read my history. She was very
conformable to talk to for both of us. She did answer our
questions and said not to worry about the Lorazapam I am still
taking (remember the happy pill?). In short, we like her and
felt good about talking to her. She charged us $45 - half an
office visit.
But, now what. If we want to use Dr. Brown, our insurance won't
pay for office visits or tests she orders. Abi and I spent a lot
of time talking about other health insurance option. Blah.
That was on the 6th. A few days later I stopped taking the
Dilantin and started feeling worse. Saturday we called Dr.
Brown's on call person. He said, take more Tegretal. I asked
about taking the Dilantin again and he said he did not think it
would do any good. I decided to call Venkatesh's weekend service
to see what they would say. He said to get a blood level and
then we'd know what to do. What about the Dilantin, I asked? He
did not think it would help, either. Well, as I said before, I
took it anyway. I feel a little better - but I don't know. I'm
going to get a blood test Monday morning.
I current feeling about the medicine is either my Tegretal is way
off or it's just not doing it for me...
=====
The other side of the story:
I've noticed two things recently. One is that I am not able to
convey the different feelings I have in words to others. The
other is I've been on an Huge Emotional Roller Coaster and I'm
getting pretty TIRED of it!
Yesterday afternoon I was watching True Lies with Abi and
Zachary. After an hour, I felt like 'I better lay down or I
might have a seizure right here.' I went to lay down. As I
walked up stairs, I felt weak and was afraid I might fall. When
I laid down I tried to relax. I started to feel what might be a
seizure, so I moved to the middle of the bed. I felt a sense of an
electrical tingling starting on my scalp and then energizing all
of my mussels. My heart started beating faster and my breathing
increased. My thought was, 'this is it.' Then it dissipated.
It left me very raw emotionally. Fear still pounded through my
veins for a few minutes. Abi came up, we decided call the
doctors and to take some Dilantin. Abi checked on the kids.
When she returned, she asked if I wanted to pray. Absolutely.
Tearful prayers.
Moments past. Then I was crying. Deep, sorrowful crying. "I
feel so trapped!!" I yelled. When am I ever going to feel okay
again? We spent most of the evening together and I did feel
better - not complete.
Now I feel strange. I'm okay...except my stomach is queasy.
Throughout the last month, I've been singing a song in my head
that I heard from Pete Seeger. It goes:
Woo OO Freedom
Woo OO Freedom
Woo OO Freedom, over me, over me.
And before I'll be a slave
I'll be buried in my grave
And go home to my Lord
And be FREE
I've been thinking a lot about freedom. About being 'free' with
my self and not acting 'sick,' even though I don't feel good.
Makes my eyes water.
I just picked up a fortune cookie fortune that was on the floor.
It says "You will be fortunate in everything you put your hands
to." Today I don't feel that way.
----------
Some strengthening things are happening. Abi and I now pray
together every night. We give thanks for all the wonderful
things we have and our children and our friends. At the dinner
table, we give thanks for the day and our health. I'm moved.
Zachary has added his twist by going around and giving each
person a hug.
-------------
We went to an epilepsy support group last week. Several people
told us that, over time, everything will work out. Some times I
will have seizures, but it won't be a big deal. That I'll get
used to the sensations and won't pay SO much attention to them.
I heard them. Abi heard them. But, it's hard to imagine today.
-------------
Finally a few words about Abi. This 6 weeks have been very hard
for her. She has again had to take up all the work with the
kids, the house, the finances, the shopping and getting me
places. Since I've only been able to work about 20 per week for
the last 6 weeks, we're both watching my time-off disappear and
trying to plan for 'what then.' Should she hurry and get a job?
What about the kids? What about time for me? Should we not
send Zachary to the Antioch school? Etc., etc.
Abi is wonderful. I'm SO glad I married her! Despite the
difficulties, she has been the most supportive person. She has a
good sense about doctor's too.
I'm not sure what I'd do without her.....
--------------
Despite these gloomy words, we're okay. Tomorrow is new. Soon
I will get my medicine straightened out and feel comfortable for
an entire day.....
Thank you again for your kindness and kind thoughts. Thank you
again for caring enough to think about us.
With love,