Dear Teresa, I am sorry to hear that you are having so many problems.
Glad you got to see Reno and Lake Tahoe. I would like to see your
beautiful Smoky Mountains. I am glad you have that beautiful view!

My name is Sharis. I live in California. I had polio in '49 when I was
4. My brother and sister had it too, but I have the worst effects. I am
still able to drive and I can walk with 2 canes, an AFO, and a shoe lift.
I have many pillows to help keep my back less sore when I sit to drive,
and a backpack to carry them in.

I was an elementary school teacher for 36 years. I retired thinking I
was aging. Turned out the new building materials used to renovate my
classroom were giving off gases that made my lungs shut down. I felt
weak and tired. Now that I am away from them, I feel better. I still
have energy problems and I get very little done...

The outpatient doctors in '50, told me not to let anyone know how hard I
had to work to look almost like a normal person. They said not to
complain to them because they didn't know what to do. I learned not to
complain or show my pain, but no one understands that now. They just
look at how well I seem to be doing and say I don't need any help.

I wanted to travel, but I fell and ripped the ligaments in my back. Now
I am afraid to fly because it will make that worse after 25 years of slow
progress toward less pain. (The doctors just laughed and said it was my
old polio acting up...)

My polio did get worse when this state sprayed our county for medfly
infestation in the fruit trees in '81. I tried to tell the doctors that
it was making me weak, but they just laughed at that too. After I fell
because my leg really was getting weaker, and hurt my back, they put on a
back brace that sat right on the torn ligament. I told them that it hurt
and they laughed. I was afraid to take it off for 2 years because I fell
at work and they were sure everyone was cheating for the worker's
compensation money. (I nearly lost everything because I couldn't work
and make $. Worker's comp was not nearly what I earned before. There
was no one to help me.)

I had to stay home a year, away from the children I loved. It broke my
heart and I didn't want to live. I figured out how to feel it, when I
was hurting more, through the agony; and not do things that hurt my back
more. (The doctors just wanted to cover up the pain with drugs.) The
drugs made me sick and I didn't want to take them, so they said I wasn't
really hurt.

I worked hard to get back to school, but the physical therapy they
prescribed was bad because they missed the diagnosis. The physical
therapist told them my ligaments were torn, but they were sure I could
not have done all I was doing if I was that badly hurt. They just look
at everyone as average and can't understand how hard polio survivors work
to look normal.

I loved teaching and fought to go back to work even though I was in
agony. I barely survived it, but did get through 4 years of constant
agony and another 7 years of constant pain. I kept protecting my back
from further injury and I slowly got better. Now I do not have pain when
I am careful, but it limits what I can do. I am afraid to ever get in
that much agony again.

The AMA doctors wouldn't help, but I found a chiropractor and an
acupuncturist who helped me survive. I even went to a social worker and
told her everything I was feeling. After 2 years, she told me she
thought I was just abusing workman's comp! (She was a doctor's daughter
who had always had the very best care for every little problem!) I told
her, "We pay into workman's comp everyday we work so that it will be
there when we are hurt! We don't have a special network looking out for
us like you do!" She had wasted my time and taken my $ for 2 years while
I was in constant agony and she never even thought I was hurt! I fired
her!

I found another social worker who did understand. She helped me deal
with my pain for the next 10 years. She became the director of services
for disabled students at Stanford University. She used my case for her
doctoral thesis. Now she is too busy to help me, but at least I helped
her understand how hard we work to cover our disabilities.

I pretended that I didn't need a cane for the first 21 years. Now I
didn't know how to act like a normal person. This is not the first time
I ever had a problem. I have been handling things myself for 56 years.
I got myself another cane because they ordered me to walk 2 miles a day
after the fall and I couldn't get them to understand that I fell because
it was hard to walk! Finally I found someone through the post polio
support group who said, "Of course you need 2 canes and you should have a
leg brace too."

It took another year to find a good brace maker who would make one for my
atrophied leg. He made me 4 braces before he retired. I am still using
3 of them!

I found another chiropractor who helped decrease the pain over 10 years.
I don't see him often because he is 80 miles away. I found a wonderful
Feldenkrais Therapist who is a trained physical therapist too. She is
the one who fixed my lungs and helped me be less tired. I can move much
more easily when she has worked on me. My legs move themselves instead
of me having to drag them! She is a great help.

I also discovered Homeopathic remedies at the health food store. There
was a homeopathic clinic 50 miles away. I went there and they gave me
CAUSTICUM. It is for burns and trauma. It made me feel much better.
According to homeopathy, post polio symptoms are the result of slow
poisoning from things in the environment that our bodies do not remove as
well as other people's bodies do. That took out the post polio fatigue.

I also find that I need a much smaller dose of medicine than most people.
My acupuncturists taught me to use a 1/4 dose. That works much better
for me. That is why the medicine made me sick when I hurt my back.
Sometimes I can stand a 1/3 dose. I do much better with just a little
medicine.

One of my students gave me strep throat 4 times in 2 months. The AMA
doctor finally gave me SUPRAX. It also took out the post polio fatigue.
I took only a 1/4 dose and it gave me manageable morning diarrhea for
years, but that was better than the fatigue. I told 3 doctors about it
and they all got very mad. They said SUPRAX had given one man almost
terminal diarrhea. It did not occur to them to try a smaller dose. They
were not interested in helping post polio patients, even though 1 ran a
polio clinic and another was supposed to be knowledgeable about polio
problems!

No one ever tested my muscles because I have minor polio damage. The
doctors said I didn't have polio at first because I didn't have the high
fever that was easiest to identify.

Sorry, I do have other problems. I never was average! Why can't they
open their minds? With computers available now, they need to begin to
realize that people are not all average and easy to treat! Computers can
help handle the differences. Why are they all so lazy?

In '03 I fell and poked the lens and iris out of my eye. I went to 8
different eye doctors. Most of them were mad at me for changing their
regular office routine. I healed with 10X contact lens needed to see
clearly, but couldn't get a contact lens for 3 months. By the time it
arrived I had lost more vision! It had to be sent back. The doctor just
guessed how much more vision I would lose by the time the next one
arrived! Fortunately the technician put a rush on it and I didn't lose
that much more vision, but the lens doesn't fit because no one will admit
he did it wrong. (The technician was sent away to a worse office even
though she was much better at her job than the fumbling fool who replaced
her!) I am stuck with a 14.75X lens.

Such a mess and they don't try to help me regain my vision or protect
what is left. I tend to see them all now as the children they would have
been in my 2nd grade class. They were very smart, but they just want to
stop thinking and do what they are best at for everyone. Their routine
is more important than the health of their patients! No one tries to
think of finding anything new or solving a new problem.

I haven't been to one of the new polio clinics the tell about on the web.
I have been disappointed so many times I am too discouraged to try
again.

I am going to try a new nutritionist Friday. I have a very low body
temperature and no one seems to want to help. A friend whose temperature
is much higher than mine is doing very well with thyroid medication. She
has much more energy now. I still want to do things to help others. I
need energy to do that.

I think it is very good to be able to talk to others who understand what
we are going through. Thank God for computers and e-mail! Please feel
free to write to me about your feelings. I do understand. I can't do
much physically, but I think it helps to 'talk' about our real feelings.

I wish you many blessings, Sharis