30 years ago today, I sat on the floor in my college dorm
room drinking a gallon of water. I was
parched. I could not satisfy the thirst
I had been experiencing for a couple of months.
It started off slowly but the last two weeks were awful. I had lost 20 pounds, had no energy, was
drinking liquids all the time and constantly running to the bathroom to
pee. My skin was dry and cracked and my
hair was falling out. I didn’t have
health insurance at the time and was reluctant to see a doctor but something was very
wrong. The next morning, I went to the
infirmary at school. It was full of
students. Flu season had arrived. I told the nurse some of my symptoms and she
looked concerned and brought me right in to see the doctor. She asked if I could give her a urine sample,
which of course I could since I was drinking and peeing constantly. As I was talking to the doctor, she came back
in, showed him something on a piece of paper and he turned to me and asked,
“Does anyone in your family have diabetes?”
The next day I was admitted to the hospital for a one-week
stay with the diagnosis of type 1 diabetes. I didn’t know at the time if I had
any relatives with diabetes although I did learn over the years that several
relatives had it. No one spoke about it so I didn’t know the symptoms. I quickly learned that I had a classic, textbook
case of type 1 diabetes and started to take insulin right away. The average blood sugar level of a
non-diabetic is around 80-100 mg/dcl.
When I was admitted to the hospital, my blood sugar was 850
mg/dcl. A very astute medical resident
asked me “You must feel pretty crappy right now.” And he was right. I had never felt so run-down and sick in my
life. I didn’t know much about diabetes other than it could be managed with
medication. In my case - insulin.
There was no question that I had to use insulin. My blood sugars were far too high to try oral
medication. I quickly learned that there
are two types of diabetes. Type 1
diabetes (previously know as juvenile diabetes) is an autoimmune disease where
the beta cells in the pancreas stop producing insulin and type 2 diabetes
(previously know as adult onset diabetes) is where the pancreas still produces
insulin but the body is not able to use it effectively. Insulin helps breaks down carbohydrates into
useable components that the body can use for energy. About 5% of diabetics have type 1
diabetes.
At the time of my diagnosis, my family doctor was getting
ready to retire. He was a lovely, older
gentleman who took care of my mother, brother and me for over 20 years. I had to find a new doctor and decided to see
one that I saw when I was hospitalized.
All the literature I read indicated that diabetics should see their
doctors regularly – every three months until blood sugars stabilized. I went to see this doctor and wanted to check
in and ask some questions. He was
dismissive. He told me I did not need to
see him unless something was going wrong.
I told him I didn’t’ know enough about diabetes to know if something was wrong. He asked how I felt and I
told him fine but I didn’t know if in fact I was fine. He told me I really
didn’t need to be there and didn't need to come unless I was feeling sick. I quickly
realized I needed to find another doctor.
Luckily, I learned that one of the secretaries at school had
type 1 diabetes and she told me I had to go to the Joslin Diabetes Center. I had been avoiding this in part to denial –
I didn’t really have diabetes….it was just some weird phase I was going through, but finally admitted that I wanted/needed to learn more about diabetes and made an appointment.
The doctor I got seemed nice. He was young and just finished his residency
at the Joslin and recently became a staff physician. During my first appointment, we spent 90
minutes going over my health, my care plan, and all the tests I should have to
get a baseline reading on my overall health.
When the appointment was wrapping up, he told me something that I
thought was profound. He said that his
job was to help me learn more about diabetes, to give me the tools to manage
it, but ultimately, it was my disease.
It was my choice to take insulin.
It was my choice to watch my diet.
It was my choice to exercise and it was my choice to stay healthy. He told me he expected me to come in to our
next appointment ready to talk and to ask questions. This was a new concept for
me – I thought you weren’t supposed to question doctors. If I had to get diabetes, I’m glad I got it
when I did. I was old enough to
understand the complications that would likely arise if I didn’t take care of
myself. But, I was young enough to dump any bad habits I had. And, I was fortunate enough to get a doctor
who showed me that I had a major role to play in my health.
30 years later, he is still my endocrinologist and we
continue to work together to keep me healthy.
