No, It's Not a Beeper, It's My Insulin Pump": Reflections on the Use of Continuous Subcutaneous
Insulin Infusion Pump Therapy
from Medscape Diabetes & Endocrinology Posted 07/22/2003 Melissa P. Ford
I don't want the fact that I have diabetes to be the first thing that people know about me. Though
it's bright blue (my favorite color) and usually fairly visible in my jeans pocket, my insulin pump
allows me to be a person with diabetes, not an autoimmune disorder with a pet human. For me, playing
show-and-tell when someone points at my pocket and asks, "What's that for?" is the best way to begin
sharing basic diabetes information. If I placed a personal ad in the London Review of Books, it
might read:
Ex-pat Anglophilic American SWF, 22, 5'2", fit, blonde/blue eyes, nonsmoker. Neglecting doctoral
work in history for wine tasting, travel, choral singing, the Oxford Union, real ale, and the gym.
Seeks cute, funny guy, overeducated, under 30, willing to learn the definition of "cannula."
For 7 years now, an insulin pump has given me the freedom to do the things I couldn't have done as
confidently on injections. I eat just about whatever I want, when I am hungry; I drink alcohol in
moderation; I travel at will; and I exercise to good effect. I can spend long hours in the library
or at the pub. Yet with freedom comes responsibility. I need a good stock of infusion sets and pump
reservoirs, spare batteries, extra insulin and syringes "just in case"; assertiveness at airports
("Medical equipment -- not a bomb!"😉; and a clear head most of the time. I wear my Medic-Alert
bracelet, but in the 10 years since I was diagnosed with type 1 diabetes, I have never become
unconscious or incapacitated (knock on wood). And the only way anyone will take my pump away will be
to pry it from my cold, dead hands. My pump not only changed my life, it gave me a different one.
I was diagnosed with type 1 diabetes in the spring of 1993, at age 12. Immediately I went on 2
injections per day, mixing NPH and regular insulin i n one syringe before breakfast and before
dinner. I tested my blood glucose 4 times per day but gave correction doses of regular insulin
before meals only. Within 6 months I was on multiple daily injections (MDI) and taking 3 to 5
injections per day.
My diabetes educator first mentioned a pump when a few months of MDI had not improved my control
very much. I told her I'd think about it. I was actually disgusted at the idea of being dependent on
a little box. After several months of railing at God, heredity, and the second case of chickenpox I
had at age 7 that may have been my viral trigger, I could handle insulin dependence as a fact of my
life...but how could a little gadget stuck in my abdomen truly help?
I came up with some fantastic reasons for maintaining the status quo on MDI. I couldn't be
responsible for poor blood sugars if my insulin acted unpredictably. More injections, resulting in
scar tissue build-up, would render bad absorption inevitable. I had no choice but to gain a lot of
weight -- I had to eat a meal or I would pass out every time I exercised. Clearly it wasn't my fault
if I had to stick to a schedule that inconvenienced not just me but my whole family in order for my
insulin to work at all.
However, the prospect of being called "a brittle diabetic" grated against my nerves more than the
idea of an insulin pump. I realized that resignation to suffering from diabetes substitutes poorly
for the courage to manage it appropriately. After my first year of college, shortly before my
fifteenth birthday (another story), my diabetes educator convinced my pediatric endocrinologist,
then dead-set against pumps for under-16s, that I needed a pump.
Going through puberty as a college student presented some challenges that MDI could not meet.
Even if MDI could have controlled my dawn phenomenon, which it did not, MDI was not flexible
enough to cope with my raging hormones, irregular daytime schedule, variable diet, and
inconsistent sleeping patterns.
Decent hemoglobin A1c results on MDI did not disclose my cycle of stubborn morning hyperglycemia
finally giving way to quite low afternoon and evening blood sugars. Frequent blood glucose testing
revealed that my intermediate-acting insulin hardly ever did what it should have done. The solution
to one problem would cause further trouble. A good blood glucose reading at lunch might be followed
later by a low blood sugar 1 hour before dinner, but decreasing the morning NPH would mean a higher
lunchtime value because increasing my breakfast regular insulin would take me too low 2 hours before
lunch, because by then my dawn phenomenon was wearing off and then I would have to snack too close
to lunchtime so that my prelunch blood sugar would be elevated, which would entail a correction dose
and possibly a hypo in the late afternoon (frustrating even to read about, huh?). Even more
worrying, God only knew what my predinner NPH would do while I was sleeping. My pre-bedtime blood
sugar rarely had a clear connection to my fasting blood glucose 7 or so hours later.
On a pump I have sometimes had slightly higher HbA1cs than I did on injections, but with fewer
unpredictable swings and a more spontaneous, fulfilled lifestyle. I live well with diabetes instead
of suffering from it. Last spring I decided that I had let myself go a bit since finishing college.
In 3 years I'd slowly put on weight through lack of exercise and allowed my HbA1c to creep up to
7.8. My healthcare team in Oxford wasn't worried, but I was. Within 3 months I lowered my HbA1c to
6.9 and lost 15 pounds by running a few miles a day in the park down the road from my dorm and
adjusting my insulin more carefully. I also had a little bag of Doritos and a cold beer at least 4
nights per week.
I still take more pride in having known what do to than in having actually done it. The proverbial
difference between giving a man a fish and teaching him to fish can apply in diabetes management as
well. The education and tools to control diabetes oneself are of far more use than any number of
admonishments, warnings, and dictates from well-meaning third parties.
Three months after reluctantly prescribing me a pump in 1996, my endocrinologist led the charge to
put a 12-year-old boy on one. My diabetes educator told me with a proud smile, "You changed his mind
about kids and pumps." Whether someone seems already bright or responsible enough to have a pump may
be a moot point: if a child has the capability to tie his or her shoes, get homework done, and take
a dog for a walk, he or she may not be overwhelmed by pump therapy. Combined with continuing
diabetes education, the level of self-direction a pump requires equips a young person to control his
or her own diabetes. Away from home for most of my adolescence, regular phone conferences with my
diabetes educator and seeing my endocrinologist during scheduled holidays helped me feel supported
but independent.
I've observed that rebellion and family dysfunction can result when a young person perceives
diabetes management as a project undertaken mainly to please the grown-ups and not something in
which he or she has the biggest stake. My relationship with my parents has always been good, but it
did improve when my control stabilized. Reduced diabetes-related frustration and depression freed me
to discuss things other than my blood sugars -- campus events I had attended, what I was learning in
my classes, and fun with friends -- when my mom called. Mom and Dad knew I would call them if I had
real trouble, as I did when I got a rather bad site infection (the only one I've had) in 1997.
A pump does not necessarily create practical inconveniences in exchange for physical and
psychological benefits. Medical professionals who don't have diabetes may be projecting their own
desire not to see their own blood when they deem frequent blood glucose testing oppressive and
burdensome. Many of us who have diabetes consider it a great technological advance that lets us live
our lives feeling good, or at least knowing why we might not feel so good, in an instant. Replacing
an infusion set every 3 to 4 days beats the "human pin cushion" effect of 5 injections per day.
Learning to ski 2 years ago would have been rather more frightening if long-acting insulin had kept
me perpetually hypoglycemic. On day 3 of 7 I reduced my basal rates by 50% and increased my carbohydrate-to-
insulin ratio. With my blood glucose meter and a few Nutri-Grain bars in the pocket
contraindicated: disconnecting and reconnecting tubing at the infusion site takes less than 1
second. I am not the only female pumper I know to have heard, "Where does your pump go in?" as a pick-
up line from a member of the
tried to get my number over drinks by asking about the latter!
It has taken me a few years to want to wear a 2-piece bathing suit or low-cut jeans and a short top,
but I wouldn't wear sandals for 3 years after having foot surgery, either. These days I don't care
who sees my little scars or my set: Every "What's that for?" creates a teachable moment. So, if
you're a cute, funny guy, overeducated and under 30, do you know what a cannula is -- or are you
willing to learn?
Melissa P. Ford, doctoral student in early modern British history at Oxford University;
founding coordinator of the Oxford University Student Union Diabetes Network; member of
Balliol College
Medscape Diabetes & Endocrinology 5(2), 2003. © 2003 Medscape
--
Steve