My Story

I was in the hospital for 6 weeks, which unfortunately started on Mom’s birthday.

This began the long process of learning how to live with Type 1 diabetes in the mid 1950s.
First we had to teach the doctor, no small feat since we didn’t know anything yet ourselves.

First the doctor wanted to make things “easy”, so I was prescribed 1 shot of insulin each
morning. Always went very low after the shot, then blood glucose (aka sugar) levels rose
through the day and I woke up with extremely high levels next morning. Kept trying for a
year or so with no good effect, so was finally given 2 shots a day which was almost
workable. Still had poor control with wildly different patterns nearly every day. This
continued for a total of 7 years.

In the meantime we moved back to the family’s hometown when I was 7. Mom searched
madly for a doctor who could help me to gain control. Right about then Dr. Dube, a new
endocrinologist, opened his practice in the city and she started calling him. He said that he
wouldn’t work with a Type 1 diabetic since it was so risky, so he’d stick with Type 2s only.
Mom kept calling him and pushing to get me treated there. Finally she wore him down and
he accepted me as a patient in 1959. This was 2 years after we moved into town.

He put me through every combination of insulins he could think of. Varied limited success
but no consistency or stability resulted. Then in 1962 he found a new pill that had just
become available, known as DBI, or Phenformin. It was for treatment of Type 2 diabetics
ONLY, but had a totally different action than earlier pills. When he changed me to 2 insulin
shots a day combined with 2 pills taken at the same time I was suddenly stabilized!
Suddenly I became a model patient, along with about 5 other Type 1s that he had taken on
in the meantime.

This discovery was a key to my good health through the teenage years until I was 25, and is
most likely why I am still alive and well today. Unfortunately there had been some
unexpected problems for other patients taking Phenformin and the FDA removed it from the
market in 1975. At that point I had to go back to multiple shots of mixed insulins, but was still
fairly stable.

In the meantime I got married to Skip in 1971 and we had a son, Ken in 1975. We’re still all
doing well.

In 1979 I finally went to college for a 2 year course at a technical school. I got a job after
that which only lasted 10 months, but then in 1981 was given the chance for a dream job
with the largest company in the world.

Everything went well in that job and I was enjoying it tremendously. Very challenging and I
was doing advanced things that no one had thought possible when I got there.
Unfortunately I was working closely with Felix, an engineer who thought my work was best
described as “Mickey Mouse”, but he wasn’t even trying to accomplish anything. He’d
earned his Doctorate in a German university so he didn’t have to work, and pulled every
trick he could to avoid actually doing anything.

Then after I’d been developing new ways to do things for 3 years I received a letter from
one of my customers in the company that praised me for doing an excellent job. This letter
went all the way up to one level below the Vice President of the company.

Felix got mad since I, with a 2 year degree, had received recognition that he hadn’t with his
Doctorate.

Then the company had everybody working with chemicals checked by the company doctor,
with a full range of blood tests taken on a Monday morning. I had a problem that I didn’t
understand at the time but my glucose levels were high all weekend, as found by the Tes-
Tape I was using in 1985. Since I really didn’t know then how to counter it reasonably with
insulin, since I just took routine doses and we hadn’t set up adjustment schemes, I tested
high on Monday morning.

Then Felix started telling everybody about it, including the bg reading that the doctor told
him when asked, a clearly illegal use of private personal medical information. Between them
with the assistance of my Supervisor they spread the idea that I was totally unstable and
couldn’t be allowed to operate machinery, at the same time that they eliminated my earlier
job and assigning me to operate machinery. As a result I was not allowed to do any work at
all for about 6 months. I was also not permitted to do various things. None of this had any
basis in fact, and came from the doctor’s earlier experience with a different diabetic some
years before.

When I asked the doctor what having a single high test had to do with having dangerous
hypos that might endanger my work he changed the subject. I was lectured about the
complications of diabetes, which I knew very well, by every medical person they could get
me to see. I was sent to an endocrinologist, eye doctor and others while they tried to prove
anything that would support their ideas. Nobody ever came up with anything, but they kept
me running in circles anyway.

That was the start of 5 years of medical discrimination by my employer. I protested
constantly to his boss, and my job was moved into another Supervisors control, with
promises to avoid entering the 6 months non working period against me in the next annual
salary review since it wasn’t my fault. Next review it was in there anyway. Then I was turned
over to another Supervisor, who pointedly kept telling me that I had been a “bad employee”
because of the lack of work in ’85 regardless of the fact that his boss had removed that from
my personnel files.

All of this made me an activist for the rights of Diabetics everywhere. In fact it’s why I’m
writing this now.

In the spring of ’86 my employer offered special deals for employees to sell off repaired or
returned computers for very low prices. I ordered mine just before they closed the sale,
which was a run away success. When I got it in the fall, along with a modem, I got online in
various ways. First went on Compuserve, and then found FIDOnet that was available
through a computer at work that was open to the general public and was actually run by
someone in my immediate work area. I found there was a FIDOnet Echo (discussion group)
and started networking with diabetics around the world.

I also joined the local branch of the Juvenile Diabetes Foundation or JDF (now known as
the Juvenile Diabetes Research Foundation) and started publishing their newsletter in
1987. Since there was an effort being made to get a new law, the Americans with
Disabilities Act (or ADA) passed in Congress that would make it more difficult for employers
to practice this sort of discrimination I mentioned that in every issue. Followed progress of
the legislation through Congress and on the news.

The bill was passed in 1990 and became effective in 1992. My employer laid me off in the
summer of 1990 just after the bill was passed. Since that wasn’t available yet I complained
to the Office of Federal Contract Compliance, which used basically the same rules but only
against Federal contractors, which my employer was. Of course when they ”investigated”
my complaint they found no record of the management using medical discrimination against
me.... Who in their right mind would keep a record of breaking a law? So I responded and
they said it was on appeal, and then lost the file.

I remain interested in helping diabetics in any way I can, particularly in the area of
discrimination.

Since then I found my foot neuropathy was increasing slowly. When the Diabetes Control
and Complications Trial (or DCCT) was publishing their conclusions a year earlier than
planned since the results were so clear. I decided I needed to get an insulin pump to
improve my control and possibly reverse the neuropathy in whole or in part as claimed in
the DCCT. Told my new endo, son of Dr. Dube who had retired while I was living
elsewhere, that I needed to get an insulin pump before the end of the year, which was 6
weeks away. He was startled since he hadn’t trained anyone else to use a pump before,
just had several move into the area and come under his care. So the MiniMed 506 pump
arrived in mid December and I went into the hospital to have a chance to train him to train
me in its use.

Later on he told me that he had trained several others to use an insulin pump. When I told
him that Humalog was available that day, which he hadn’t been aware of, he prescribed it
for me and it made things work even better. Some time after that he told me he was glad I’d
called since all of his other pumpers found it so much better and all had improved their
control.

Then in 1995 I started using the Internet, which is so much better than FIDOnet or other
earlier networks. I’ve been a member of several diabetes lists over the years, served as a
member of the BOO (Board Of Overseers, a minor joke) on one of them and have now
become an ADI Moderator.

Dr. Weinstein came immediately to the hospital and began work on Ted. The strep throat
in combination with the diabetes, coma resulting in unbalance of electrolytes in the
system. We sat together for two nights and days restoring the system by many changes
in medication. Mrs. Meyers put on her nurse's uniform as needed to keep progress going.

The point was reached where we were called in to be with Ted as he passed away to his
maker. Our Minister prayed with us and we walked down the hall to the bed room I can
well remember wondering why I was completely calm with no fear or was I some kind of
monster that did not care. This was soon answered when the nurse came dashing down
the hall and dragged me by the arm. She said hurry and put your head on his pillow and
talk with him.

I did this but do not remember what I said or how long it took. Finally the nurse said, "He
is coming around". Jean was with me all the time and just as calm. This is how prayers
work. Our Church family was supporting and strengthening us through their prayers. We
in turn had the calmness to reassure the child. The good doctor was free to put full time
on the case. Eleise Meyer was free also and knew all the skills needed to get the best
help assigned. The Church members knew that Ted had been building plastic model
airplanes and there were several presents for him on the table waiting for him to get well.

He was so weak that he could just move his hands a little. I gave him a flashlight so he
could shine it on the walls and ceiling. One nurse took it away so he wouldn't run down
the batteries. I purchased a carton of batteries and left them with a note for the nurse to
change the when needed. Another nurse asked me to post a note on the door to refuse
admission to other doctors. The treatment notes on the bed were getting so thick and the
records showed that Ted had made medical history. The amount of Insulin used before
recovery started was 500 units for a full-grown man. Ted had 1050 units before recovery
started.

Progress seemed slow after that occurred. He was sitting up and acting improved but he
did not speak. He was thoroughly examined by specialists and they concluded that he
was a very tired child. We began to open some of the presents. First was an airplane
model. He looked at the numbered drawing of the pieces and smiled a little.

We then opened another and he spoke his first words "but daddy it would be hard to put
two of them together". I asked him if it would be hard to keep the parts from getting mixed
up. He could not read so he just put them together by the numbers.

I can never forget that moment. It was now proven that Ted had all his mental abilities. It
also proved the power of prayer and the power of love.