Living With Lupus
This week, Jaynee explains her medical dilemma.
For weeks, I’ve been depressed. My
lupus doctor moved to the suburbs and referred me to a new doctor—she said
a “hand-holder”. The new doc insisted on a barrage of tests to gauge
where my central nervous system lupus was now. Tests showed I have
vasculitis of the small arteries in my brain and that causes progressive
brain damage. Previously, when I had flare ups, my internist called
it “Labyrinthitis”, which is an inner-ear problem that stands alone.
That wasn’t really the problem, although that was the outcome. The
problem was my vasculitis causing a lack of blood to certain nerves, which
caused inner-ear disturbances. The difficulty with lupus is that
it closely imitates many other illnesses. Even when lupus is diagnosed,
as with me, flare-ups can be misinterpreted.
The first test to be repeated is called
a SPECT scan. Not being claustrophobic, having a shot, and lying still
under a giant machine doesn’t bother me. The SPECT scan was able
to see that although there was still some abnormal blood flow, it looked
okay enough to the radiologist. My neurologist said any abnormality
is abnormal. Next, I spent all day at a hospital taking a Neuropsychological
Evaluation, also my third, but my first at this hospital. The neuropsyche
eval measures cognition, memory, emotional difficulties, and muscle/nerve
strength. They are able to specifically identify deficits and which
parts of the brain are affected. This is really a terrific test.
I had to call around to see who was covered by my insurance, but it was
worth it.
My results were complicated and disturbing.
I have specific areas of difficulty in the same areas where my other skills
remain excellent. They showed more problems than I suspected.
The next test was a brain MRI with contrast. That means half the
time you lay in the MRI “plain”, and then they shoot a chemical into your
veins, which will highlight problems, and you lay in the MRI for the rest
of the hour. The MRI results were a surprise for me. They turned
up a lesion on my brain. My neurologist called it a Meningioma—a
kind of tumor. He says they can just watch it for now. The
fourth and last test I had was one my doctors had to fight for. My
insurance arbitrarily turned it down initially, but eventually, my doctors
won. I had to take the test at the University of Pennsylvania Hospital,
the only place in Philly who offers it. It was a PET scan, a much
more complicated test similar to a SPECT scan. It will show how much
blood is going to specific areas of my brain. The results will be
in from that next week. I will know what kind of tumor I have, and
how serious the slow blood flow to my brain is.
Needless to say, I have been on edge for
weeks. I started complaining to my rheumatologist wanting to staunch
the progression of my brain damage. Her retort is that she doesn’t
want to throw very heavy drugs at it unless the problem is deadly serious.
My question is why not half-measures? I still don’t understand and
that doesn’t make this time easier for me. All this stress and complicated
medical tests are not unusual with lupus. Patients have to fight
with doctors for a diagnosis and for treatment. It never stops.
I know there is a lesson in this, and I hope I’m learning it. Meanwhile,
I’m a nervous wreck.
Copyright 2000 by Harry Martin Polis
Harry is available for lectures and entertainment
with stories and poetry. Contact SCOOP USA, or e-mail Harry.
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Driving Me Crazy
Since September, we have been on a merry-go-round
called college application time. Maybe it’s the last straw of teenage
torture before the child finally begins his solo voyage. Brian has
tons of schoolwork and in between, he is supposed to fill out applications
and write essays. Parents have their own role in this farce.
Not only do we supervise it and keep an eye on the deadlines, we are required
to compete pages and pages of financial information. Not only do
we forward our income tax returns, we have to complete complicated questionnaires,
which will determine our child’s college fees. Every institution
has to be sent copies of these forms and forms have to be completed and
checks sent so that the forms are sent from the group that governs the
financial piece. Each college has different requirements. Each one
has its own codes and numbers. Can you imagine having forms for four
or five different schools? You need a chart, a healthy heart, and
a hairpiece so you will look okay after you tear your hair out. Add
into this mix a smart son who procrastinates. At this time, everything
is due in a couple of days. Brian still has about four applications
and maybe five essays to write.
During this college application process,
which ideally should be over by now for us, we have needed to keep in contact
with Brian’s college counselor, and the principal’s assistant. Of
course, parents have to drag their kids around to visit the college campuses
too. Dragging is accurate because kids have their own assumptions about
colleges and areas they have never experienced. We were not able
to convince Brian that there was any culture below Philadelphia or above
or beyond Boston. Although there are excellent schools in Pittsburgh
and Baltimore, we could not convince him.
I am hoping that next summer Brian will
pack his bags ready to go live in the dormitory of a wonderful college
somewhere within 100 miles of here. We will have been picked clean
of money, but then we are used to that. Opening up a child’s mind
to knowledge and love of learning is priceless. Someday, when Brian is
older and wiser, I hope he appreciates the effort we have made.
Copyright 2000 by Harry Martin Polis
Harry is available for lectures and entertainment
with stories and poetry. Contact SCOOP USA, or e-mail Harry.
WHY A PRIVATE SCHOOL?
Yesterday, I went with Brian to make sure
he got to take his Scholastic Aptitude Test for college. The last
time, about two weeks ago, the teachers delayed him so much by sending
him from one room to another that he never got to take the test.
No room was set-aside for the ‘L’s, (for Levy-Polis), and each ‘L’ kid
had to be individually seated. Brian happened to be the last child,
and he was moved more than twice, and then sent to have papers signed.
Only Brian seemed to care about his taking the test. The teachers
were rude and disrespectful. I was enraged. Yesterday, I accompanied
Brian to supervise his treatment and insure he was seated for the test.
I was told we had to go to another room where students and two teachers
checked identification. While I had their attention, I told them
how angry I was. I was led out by one teacher and escorted to the
door by another. It did not matter that I was a retired school employee.
My opinion is that the public school system
has a prison mentality. Many teachers and principals hate the students.
I should know because I worked in the system for over 16 years. I
heard all the disparaging remarks. Teachers are entrenched.
They have a civil service way of looking at work and job security.
Too many teachers should not be teaching at all. I remember even
when I was a child, how teachers threw erasers at students or grabbed students.
One teacher even hung a boy on the chalkboard by his shirt. These
are some of the reasons I paid a lot of money to send Brian to a fine school.
I wanted him to really learn and love learning. He has learned to
enjoy learning, and he’s had a great education. I am proud I took
him away from the public school teachers who would have killed his spirit.
I have gifted my son with an intact soul. He will attend a good college
and be a productive member of society like our daughter, Honey.
Our public system promotes discord, hate,
and fear among the students who attend. Good or bad, the students
are all treated as though they are worthless at some point. It is
a smart, lucky parent who can remove his child from the clutches of these
so-called educators. I am glad I retired from a system that hates
its employees and its students from top to bottom. It was the worst
outfit I ever worked for. The police department with all of its problems
had more compassion for its members than this group ever dreamed.
Copyright 2000 by Harry Martin Polis
Harry is available for lectures and entertainment
with stories and poetry. Contact SCOOP USA, or e-mail Harry.
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