First
off let me say thanks for taking your time to read this piece. It took me quite some time to put everything
into words. What I am trying to convey
in this piece is how diabetes, while part of my life, has meant something
different to me at each stage of my life.
Sometimes it consumed every aspect of my life while other times it was
behind the scenes as an afterthought. Regardless of how front and center or
back behind me it was or is diabetes has changed who I am and has changed my
life forever.
D-Day
October
1995, I was 8 years old and in 3rd grade. I was looking forward to Halloween, dressing
up and eating candy until my stomach hurt, or until my mom took it away from
me, whichever came first. Instead the 2
weeks leading up to Halloween went like this…
Jumping
off the school bus with my little brother, we raced inside. It was a Friday afternoon and what kid wasn’t
excited about 2 days of freedom? We had
our normal afternoon snack, my mom said there was something different going on,
but I didn’t notice. All I wanted was
something to drink, and not just a glass of juice or tea or water, but more
like a pitcher of anything. I was
thirsty, like if I didn’t have something to drink my tongue might just fall out
of my mouth and dry up right in front of me.
I continued to play with my siblings but besides wanted to drink
everything I could get; my play time kept getting interrupted because I
couldn’t stop having the urge to go to the bathroom.
Well,
all of you familiar with diabetes know, these are the key symptoms. My mom kept an eye on me all weekend and told
me Sunday night at dinner that I was not to have a snack before bed or to eat
breakfast that we would be going right to the doctor’s office on Monday
morning. Monday morning came and off we
went, where my mother explained to our GP what was going on, they did a finger
stick and came back to the room and blurted out, “Your daughter has
diabetes.” Mom burst into tears, I was
confused, but since mom was sobbing, I thought, “I’m dying, I’m going to
die! This is really bad if mom is crying
like that.” The doctor and nurse tried
to console both of us and explain to me what was wrong. From there they sent me to a pediatrician and
then onto the pediatric unit of our local hospital where I spent 1 week
learning about diabetes and being poked and prodded like cattle. When I finally came home, my mom and dad kept
me out of school for another week to help me adjust to my new life, needles,
needles and more needles followed by insulin vials, glucometer strips and
glucose tabs. I remember each time the
phone rang, I secretly prayed it was the doctor’s office saying they had made a
mistake. Too bad that phone call never
came.
This
was my new life. October of 1995 this
was when I went from a child to an adult.
The old me was gone and the new me, the diabetic me, was here taking on
the burden of a disease, becoming responsible and having fear and worry become
part of my every day.
 | |
| 8 year old me after diagnosis with my hideous medicalert necklace |
Elementary School and Middle
School
Being
the only kid with diabetes sometimes had its perks. Not that I took advantage, but if I was
hungry I ate in class, if I had to go to the bathroom I went and if I didn’t
feel good I left class. No one
questioned the only diabetic kid in town because no one really understood
diabetes.
Elementary
school and diabetes to me meant being a little different, but
most of my friends liked being able to get out of class with me to walk to the
nurses office, so no biggie there.
Moving on to middle school though, diabetes took on a whole different
meaning.
Pre-teen
and beginning teen years with diabetes were tough, especially as a girl. Having diabetes meant I wasn’t like my
friends. I had more trips to the
nurse’s office, I had to take more insulin usually in the middle of the day
which meant more shots, and there were more low blood sugars more frequently in
class. I went on my insulin pump during
middle school, which was cool for a little bit but eventually only added to my
non-normalcy. Teachers would stop and
tell me pagers weren’t allowed in school, and kids would ask a gazillion
questions about it. I started referring
to it as my “idiot detector,” because only idiots would repeatedly ask me to
take off my “pager” even after I had already told them it’s an insulin
pump. A slippery slope started during
these years as well. My doctor’s had
foolishly told me having an insulin pump meant that I could eat whatever I
wanted. Who does that? Beyond dumb!
So there began my battle with body image, eating issues and exercise. .
.
I
wanted to be like everyone else, especially the more popular girls eating junk
food and staying skinny. These were the
days when schools were first having Little Debbie cakes in the lunch rooms as
well as vending machines for fruit punch.
Wanting to fit in, I did more damage than good to my body. I ate that crappy food, knowing the
consequences but risked it because I wanted to be normal. Fudge rounds and a canned fruit punch would
be my lunch, not every day but frequent enough that I recall wanting to fall
into a deep sleep within 20-30 minutes after lunch (gee I wonder why? I’m sure
my sugar was sky high). I think back to
how stupid I was, eating practically 100grams of junky carbs for lunch. The outcome, a bigger jean size, higher A1c
and more insulin-not so great! My
solution was far from intelligent, bouts of starvation diets where my thinking
was, “well if I don’t eat my blood sugar will be lower (helping to lower my
A1c) and I’ll lose weight and be like the popular girls.” My poor mother never knew the crazy things I
did until recently, and one of these crazy stints actually caused severe
hypoglycemia with a reading in the mid 20’s, numb arms and complete confusion
and the inability to feed myself.
Luckily I never lost consciousness and I was with my mother when it
happened. Moving onto high school and
dating with diabetes. . .
The Teen Years in Full Effect
aka High School
Oh
high school, such a mixed bag, boys and dating, soccer and friends and my sidekick
diabetes. Let’s start with dating.
 |
| Kicker for the varsity team |
I was
always an open book with my diabetes, I never hid it but high school opened a
new can of beans, especially with the boys.
Yet again, dating and diabetes to me meant I was not like all the
other girls. I was embarrassed, was
afraid of being judged, I was afraid of being different. What if my finger pricking freaked out my
date? What if I passed out on my date?
What if, what if, what if? My first date
I remember planning what diabetic essentials I absolutely had to take to be
safe and thinking how I could discreetly hide my glucagon. Instead of enjoying my date I spent my time
terrified of a low or high blood sugar, pump malfunction, what if he wants to
eat food I can’t, etc., not exactly what a teen girl wants her first date to be. (Luckily, when I met my husband at age 17, I
had gotten over feeling awkward with diabetes and dating.)
Where
I did find my stride and I wasn’t different was the soccer field. I had diabetes but despite it I was strong,
I was determined and I was able.
Granted I did some stupid things like not waiting to be fully recovered
from lows before I took the field because I became OBSESSED with the game.
During the high school years I learned of the dreaded high blood sugars from
intense exercise and trying to combat those after a handful of 90 minute,
stressful games (which all of I had to disconnect my pump). Half time team huddles for me consisted of
blood sugar checks and correcting highs with my insulin pump or lows with the
nearest juice box or whoever had Gatorade would share. I had a great group of girls and a great
coach that looked out for me and I could forget about my diabetes for a slice
of time mid-game and just be Dorothy.
Goodbye Home, Hello College
& A Serious Relationship
What a
jump from my tiny, fishbowl town, to a school that had more students than my
town’s population. Having diabetes in
college meant so many things; I was really on my own with this disease! No one knew me here except for my roommate,
there was no one else to look after me or help me out. It meant being the college kid at the party
with the water bottle while everyone else was drinking. It meant when I did drink I was usually
scared beyond belief that my blood sugar would whack out so badly who knows
what would happen, but peer pressure is a tough thing sometimes. It meant that I addressed every professor on
the first day of class and filled them in on my diabetes and I usually sat very
close to the front row. Diabetes in college meant (at least for me) that I was
more responsible.
An
awesome thing that happened during this time period was the fact that I allowed
someone else in to my diabetes realm to help me other than family. My now husband was the first guy that I
shared everything about my disease with and let him help me with everything,
finger sticks, changing my insulin in my pump, treating my lows, my anger at my
highs.
This is when I learned that
having diabetes and a relationship meant NOTHING! Having diabetes didn’t cause judgment,
embarrassment or for him to look at me differently. I was just a girl and he was just a boy and my
diabetes didn’t matter when it came to love.
I
graduated Cum Laude with a business degree in 2009, with a diamond ring on my
left hand and a wedding planned for June.
What would diabetes and newlywed life, working full time and being a
real adult mean?
Welcome to the Real (business) World
I want
to warn everyone reading this that not every diabetic has the same experience
that I did in the workplace. However, having
diabetes and working meant that I needed an understanding employer that
accommodated me needing breaks for the bathroom, blood sugar checks, dealing
with lows or highs, lunch and my endocrinologist appointments every 3-4 months. My position started out with management that
understood all of this but quickly changed once I went from part time to full
time.
What
T1D and working turned into was misery.
I almost never had a set lunch time, many days without lunch breaks or
breaks at all or I would be called off of my break, trying to control my blood
sugar under the amount of stress I had was ridiculous, having many people
understand that when my sugar was low I needed to address it right then, not in
10, 15 or 20 minutes. I had a schedule,
but frequently would be packing up for the night and would be told I had to
stay meanwhile I was unprepared and would have no dinner and my days would
stretch from an expected 8 hours to 10-12.
Overall, it was a bad experience; my A1C began to climb from the long
days which exhausted me and I quit exercising, crazy eating schedule, stress,
etc. Everyone with diabetes also knows that ensuring our feet are in
comfortable, good, supportive shoes is a necessity. I was regularly harassed by my superior about
my shoe choice to the point of tears and she finally relented after saying,
“We’re not having this conversation again about your shoe choice.” Tears filled my eyes, “ugh, if this is
because of your diabetes then I guess we just won’t talk about it anymore but
you could probably find better looking shoes.”
They were brown clogs and I stood on my feet practically all day behind
a counter at a bank, no one cared what my shoes looked like as long as I could
deposit their money. To make a long
story short, after 4.5 years of banking, depression and the highest A1C I’ve
ever had (7.3%), my husband landed an awesome job and I was able to put this in
my past and put myself first.
Taking My Health on as My Full
Time Job
There
I was at 24, coming out of depression, leaving a miserable job and putting myself
first again. I wanted to take a break
from my insulin pump and found many people supporting the theory that I had
come to on my own; my tissue was no longer absorbing my insulin correctly due
to scar tissue therefore my blood sugars were inconsistent and my A1C was
up. My endocrinologist shrugged at this
and became less and less help in the months that passed. I knew that I had to do something and I
became consumed with research and educating myself on nutrition, diabetes,
alternative medicine and fitness. At
this point in my life, having diabetes meant that I had to be my own advocate,
my own experiment and take control of my health 100%.
 |
| Finishing a 5k in 2012 |
I
slowly began cutting dairy out of my diet, then grains and sources of sugar and
was finally 100% paleo. I saw a drastic
turn around in my blood sugars within a week.
I picked up kettlebell exercises twice a week, jogging 2 to 3 times a
week and dropped 8 pounds in 2 months.
Everything seemed to be going well and I finally felt that I had found
the solution to diabetes management.
This
past fall I found Dr. Richard K. Bernstein, a T1D himself and began following
his plan. I approached my new
endocrinologist with a well put together treatment plan which included
disconnecting from my insulin pump and going back to MDI’s. My plan also included a ketogenic diet of
30-45 carbs per day from non-starchy veggies, moderate protein intake and a
higher fat intake. I was very surprised
when my new doctor got on board and on January 3rd of this year, for
the first time in 12 years, I put my insulin pump in a bathroom drawer and
picked up an insulin syringe. Granted,
there are ongoing adjustments when switching from one regimen to another, I am
taking at least 6 shots a day and testing my sugar 8 times a day, but I feel
great. I’ve had to experiment with
dosages, figure out a different strategy to combat the dawn phenomenon and
become my own guinea pig however I feel that it has been 110% worth the extra
effort. My A1C is finally in the 6’s
after years of struggling to get it back down, I’ve lost a little weight and I
have nowhere near the number of extreme highs or lows that I previously
experienced on my insulin pump.
The Here and Now-What Does
Having T1D Mean to Me
After
years of merely existing with this disease and letting it run its course
however it pleased, I finally feel that I’ve gained back control. Having
diabetes means to me today that I am blessed.
Yes, blessed. Why you ask? Because I don’t know who or how I’d be without
it, so while some may consider it a curse, it is my blessing. Having this disease has opened my eyes to
realize the beauty of life, to see how precious life is, how intricate and
wonderfully made we are, how complex our bodies are. It has given me a great passion for education,
alternative medicine and holistic nutrition.
This disease has given me a life that at times may be challenging, but
it has enabled me to inspire and help others navigate the ins and outs of
diabetes and for that I am grateful.
~D
