Friday, I had just gotten back from a weeklong work-shop in Southern Ohio.
It was enjoy able trip with the exception of the mosquitoes. In recent years
my body seemed to swell up more whenever I got bitten. The icing on the
cake for this trip however, was not the mosquitoes, but the bite from a
horse fly. It really hurt, and quickly swelled up to the size of a fifty-cent
piece. My first symptom happened the next day. I was driving home from the
auto parts store and I blacked out. "Moments later it happened again. The
experience was really frightening. I told myself that if "it" happened again
I had better pull off the road and get some help. Nothing happened, so I
kept driving. I made it home and was relieved. The fear subsided. I remember
thinking that I would call the doctor on Monday. Sunday I drove to Cleveland
to my regular A.A. meeting. I am a recovering Alcoholic. Now sober 22 years.
During the AA meeting my second symptom happened. I had difficulty putting
my thoughts into words. I apologized to the group.
Monday came; I called the Doctors office to make an appointment. Told
them I wasn't feeling well. They told me to come in. They did a urine
test and found blood in my urine and put me on antibiotics. Due to my
previous history of Stroke, I mentioned about the "weird ex-perience"
I had on Saturday. I told them that I "phased out" twice on the highway.
Unfortunately I wasn't able to explain my experience clearly enough. Had
I said I "blacked out", perhaps they would have checked more than my urine
that day.
Tuesday through Thursday I called in sick. I felt like I had the flu.
I was weak, headachy and light bothered me so much I had to darken the
room. I made a follow-up appointment with the Doc that was covering for
my regular family physician. My urine was okay. I told the Doc about the
incident driving so he did an extensive exam, checking for possible stroke.
He could find nothing that would indicate anything was wrong. Monday back
to work. I worked in a small V.A. Clinic across from St. Thomas Hospital
in Akron, Ohio. I worked the afternoon shift. More symptoms. I complained
to my co-workers that I kept getting the date wrong, that I felt like
I had lost a day. I was grouchy and irritable. A client was expected for
an intake at five o'clock. He arrived, the interview began. I blacked
out; then the next thing I remember happening was seeing my right hand
in front of my face vibrating. I remember telling the client that I thought
I was having a seizure, to go get help. At the same time I wondered how
I knew that. I thought that I would fall and probably hurt myself. I thought
that perhaps I would fall in an undignified manor, and my next thought
was who cares. I have told people that this moment was the closest thing
to a death experience that I have felt. I wish I could go through life
with the attitude that was in me at that time. At that moment all I re-member
was that I felt at peace. It was the absence of Fear that was remarkable;
I felt safe, at least part of me anyway......
My co-workers verified that I did tell the client that I thought I was
having a seizure to go get help. I did in fact fall and really hurt my
shoulder. I also did not land in a particularly dignified manor. They
told me I wasn't exactly Peaceful!! When the Paramedics got to the site
I was highly combative. They said that I was trying to punch the paramedics.
Apparently I didn't like getting strapped down. So much for my peaceful
state of mind. (Grin)
My family and co-workers have told me that I was transported to the
hospital across the street. My family said I was "out" I am not sure if
they called it a Coma or not. My temperature was 105. Several hours went
by. When I "came to" I was delirious, "in and out". My one son said I
was very thirsty, disorientated and argument-ative. The first thing on
the agenda was that they needed to rule out another bleed (stroke). I
remember con-versations with family and co-workers. I was joking with
them about doing my work from the bed using my supervisors lap top computer.
The weird thing is that I could not see anyone. No color, everything was
foggy and gray. My daughter told me that they were going to send me home,
which was fine with me. The scary part is that I was in no way ready to
go home...so much for managed care. They had gotten me to sit up according
to my daughter, to help make me more comfortable. The nurse had left my
daughter alone with me and she was holding my IV bag, when I told her:
"Oh no! It's happening again!" I saw my hand vibrating and I went into
my second complex seizure. Infectious Control was called to rule out Bacterial
infection. A Neurologist was called. They admitted me to the ICU. Batteries
of tests were done. MRI, Spinal tap and later the next day I was given
a CT Scan. I was "out of it" for most of "it", with the exception of the
Spinal tap. The pain of the Spinal tap made me conscious and I remember
telling them to numb me out more, then I drifted back into blessed oblivion.
The Medical staff told my family that I had viral meningitis/encephalitis.
They ruled out the herpes encephalitis, no check for mosquito (arbor borne)
encephalitis was done. I later requested that test and it was negative.
We were informed that it was too early in the season for arbor borne infections.
I told them about the horse fly bite, and was told that you could not
get encephalitis from horse fly bites. I was put on Acyclovir IV for 14
days. I chose to go home half way through the treatments. The Visiting
Nurses came and helped with the infusions. It worked and I got better.
The other drug that I was put on was Dilantin, but I but was taken off
of that, as I was allergic to that medicine. I have not had any more seizures,
and I am not on any current medicine for seizures.
The only thing that makes sense to me is that I may have had a major allergic
reaction to the horse fly bite and that may have caused the encephalitis. At
this point it is no longer important how or why. In the beginning of my recovery
I was obsessed with trying to find the cause. I was full of Fear; somehow it
seemed logical that if the cause were identified I would be able to protect myself.
With time on my hands I went to the Internet looking for answers. That
is where I found some answers. They had a listserve at the time where
you could ask questions, vent and just connect with other folks that had
survived or were caregivers to those with this disease. This is where
I met Daniel. He was so helpful. It is so important for us to use our
brains. He was one who encouraged me to play computer games to help stimulate
the brain. Writing and re-writing this story has been very therapeutic
for me. The NEF site is down, but Daniel is still around and now Ingrid
has started up a place where folks can go to ask questions, and get support.
I am one of the lucky ones, diagnosed and treated quickly. I was off from work
for two months, then began working part time, finally full time. My current
residual effects are short-term memory loss, fatigue, visual confusion,
mood swings, depression and photosensitivity. I find it difficult to deal
with too much stimuli, such as large crowds, a big busy store, or more
than one task at a time. My reaction is usually anger. I look like I am
the same old Joy, but I am not. The problem is that sometimes I try to do
what I used to do. I can't! Sometimes I have to remind folks I work with,
that I can't keep up with the old pace. I forget things, even how to do things.
But I must say it does pass. If I forget a word, I give it a minute most of the
time it comes to me. If I were to give some sort of advice it would be to
surround yourself with people, who care, even if it were just here in cyber space.
It is so important not to be alone in this. Get plenty of rest, use your brain,
eat right, get exercise, most of all be gentle with yourself.