A few months back, I shared the story of my T1D diagnosis. If you read it, you know my mom was there through it all, and has been ever since. She took the time to write inserts in the story from her perspective in real time. Her comments are below in red. I occasionally forget, on top of my own challenges with T1D, being the mother of a child with a chronic condition brings its own difficulties and uncertainties. I know I cannot understand that now, since I am not a parent, just like she cannot fully understand my perspective. However, we choose to recognize this fact with a mutual understanding of our unique challenges and unconditional love. I am so lucky to have my mom as my mom. I thank her for her unwavering support and bravery in her own obstacles. Also, if you are a parent of a child with T1D and this resonates with you, I know my mom is always willing to offer you support as well.
II. IX. MMXI. February 9, 2011. This date has great significance in my life. In
fact, the Roman Numerals are tattooed on my rib cage (basic location, I
know). Another great story, for another time. This is the day in which this
journey began, the day I was diagnosed with Type 1 Diabetes. My
“diaversary,” if you will. Here is the story…
In February of 2011, I was a freshman at Plymouth North High School. I was
doing well in school, surrounded by inspirational teachers and great friends. I
was working hard to get good grades. I wanted to be a writer. I was active
and had unlimited energy. My parents used to refer to me as the “Energizer
Bunny.” I was part of an indoor lacrosse league, working tirelessly to make
varsity as a freshman for the spring season. I was a normal fourteen-year-old
gal.
Then I got sick, nothing crazy - just a bad cold. It must have been the first
week of February. I missed school for a few days, binge watched the Disney
Channel and I was fine. Unbeknownst to me at the time, as my cold symptom
began to improve, my diabetes symptoms kicked in.
Quick pause in the story for a little science lesson, stick with me.
Symptoms of Type 1 Diabetes include extreme thirst, excessive urination,
hunger, weight loss, irritability, and fatigue. The symptoms make a lot of
sense if you understand the physiology of T1D. Type 1 Diabetes is an
autoimmune disease. It is not caused by eating too much sugar (or anything
else for that matter), there is no way to prevent it, and there is currently no
cure. GRRRR!!
The pancreas is made up of islet cells, which produce alpha and beta cells.
Beta cells secrete the hormone insulin and alpha cells secrete the hormone
glucagon. These two hormones regulate the body’s glucose levels. In
someone with T1D, the body’s immune system mistakes these cells as
intruders, therefore attacking and killing them. My mom likes to say my
immune system is just overprotective. This seemed like a reasonable in-part
explanation to a 14-year-old.
So how does this correlate with the symptoms of T1D?
Well, the initial symptoms of T1D are also the ongoing symptoms for
hyperglycemia, or high blood sugar. Let me explain.
Let’s say I have a smoothie for breakfast. (You can substitute your favorite
breakfast food in there, the smoothie really isn’t important to my point.) The
sugar enters the bloodstream and needs to enter the cell to be used as
energy. Think of insulin as the key that unlocks, and allows, the sugar to go
from the blood stream into the cells. Now, without the insulin, there is no way
for the sugar to enter the cells and it will remain in the blood stream. Hence,
high blood sugar. This is where those symptoms kick in. It is uncomfortable
for the body to be in this state, so it does everything it can to help (which like,
thanks for trying bod but you’re literally not helping at all). The extreme thirst
is the body’s attempt to flush out the sugar from the blood stream. This
correlates directly to the excessive urination… and neither is successful.
Since the sugar is simply sitting in the blood stream, the cells are starving
without energy… and so are you. No matter how much you eat, the body
cannot use the majority of the nutrients. You are hungry, losing weight, and
exhausted since your body cannot find a source of energy. This is why T1Ds
need insulin. We will die without it.
But let’s get back to the story. I began to have all of these symptoms. L
ooking back, I may have had them for a few weeks, but they certainly ramped
up after my virus and in the week leading to my diagnosis.
I. was. so. thirsty. This is an understatement! Kelsey would wake up in the
morning, have a tall glass of water. She’d disappear to straighten her hair (as
she said, typical 14-year-old high school freshman), and within minutes, would
be back for another tall glass of water. At the time, I was a distributor for a
health and wellness company. Purified water was one of our products. We
were all a bit crazy about it. We were all drinking a lot of it. But it did register
for me that her intake was excessive. A mental note was made.
I couldn’t handle it. My mom initially said I was just dehydrated from the virus
and my active lifestyle, but we quickly realized something was wrong. I
couldn’t get enough water. There wasn’t enough water in the world, I thought.
I remember taking a flashlight and looking all around my mouth because I was
convinced that I had crystallized salt particles stuck to my cheeks that I simply
could not wash away. I woke up in the night, dumped out the gallon of milk in
the fridge, filled it with water and poured it down my throat as fast as I
could…… about three times. It was unbearable. See above.
I was peeing every 20 minutes. I was exhausted. I was getting spoken to in
school because I was constantly leaving class to go to the bathroom, or fill up
my water, and when I was at my desk I was nodding off. I was cranky. I was
snippy with my family. Yep.
I was starving. I was eating all the junk food in the world and was still less
than 100 lbs. We’re talking Boston cream donuts, Monster Mash Ice Cream
Sundaes from Friendly’s, two lunches and multiple helpings of dinner. This is
accurate. Looking back, it seems so obvious. At the time, however, she was
a growing adolescent, or at least that was the thought. She wasn’t losing
weight, but at a time she should have been gaining, that wasn’t happening.
Something was wrong and it was becoming more and more obvious. My
mom googled my symptoms that Tuesday night, February 8th. We stupidly
thought, “No way it’s diabetes.” I had a physical planned for the next morning
anyway, so we would get everything figured out then. What Kelsey didn’t
know at the time was that on Monday, February 7th, I called the pediatrician. I
informed the nurse of Kelsey’s symptoms and I said I was very worried that
she might have Type One Diabetes. I knew about the thirst, and the mood
swings. I asked if I should bring her in. I was asked a few more question and
was told in that she had a physical scheduled for Wednesday, she could wait
until then. I was told what to watch for if it became necessary to go to the
Emergency Department. Sidebar, I’m not blaming the pediatrician’s office. In
retrospect, I wish I’d been more persistent, but I was scared and didn’t want
this to be so, and if they weren’t overly concerned, well, then perhaps I was
overthinking my assumption. Kelsey and I did look up the symptoms the
following night. To be honest, I was starting to mentally prepare.
The next day, February 9th, I woke up and got dressed for school. I still
remember what I wore. Light flared jeans, a white long sleeve shirt, white
sneakers, and I stole my older sister’s black and white striped scarf. I put on
my favorite silver flower earrings and left my hair in its natural curl. I do not
remember what she wore, or what I wore. I went off to Plymouth North High
School and struggled through first period Spanish with Mr. Wooten. Finally,
my mom picked me up to dismiss me and we headed to my appointment.
On the drive from the school to the doctor’s office, Kelsey asked, “What if I do
have diabetes? I’ll be like Nick Jonas!” Sorry Nick. I was relieved that you
were one of her celebrity crushes, and that you were healthy and young and
living your life with this diagnosis. If you could do it, so could Kelsey. I didn’t
say that to her. I think I said, “Oh, you don’t have it, Honey.” All the while
thinking, “Please don’t let her have it.” I wasn’t nervous walking into Long
Pond Pediatrics. I was young and healthy. I felt invincible, like any other
teenager. We checked in and sat in the waiting area, which had a large
wooden whale hanging from the ceiling. I stared at it as we waited for the
nurse to call my name. When she did, my mom and I walked into the exam
room. The nurse took my vitals and asked how I was doing overall. We
explained my symptoms and with a newly pale face, the nurse excused
herself from the room. She returned moments later with a urine cup. She
said Dr. Ingalls, my pediatrician, wanted to get a urine sample.
This was no problem for me. I could’ve peed constantly around the clock if
that was an option. I left the cup in the bathroom and returned to the exam
room. Dr. Ingalls knocked on the door several minutes later with a half-
hearted smile. My mom grasped my hand.
She went on to explain that there was an abnormal amount of sugar and
ketones in my urine. These are indicative of Type 1 Diabetes, but I would
need to go to the hospital for further testing and a formal diagnosis. I don’t
remember if we asked her many questions. I do. I point blank asked if this
could be indicative of anything other than T1D. She shook her head and said,
“No.” It was pretty obvious she couldn’t officially tell us much more. But she
was kind and supportive. She told us to drive to South Shore Hospital in
Weymouth. Here they would do blood work and a few other tests and then let
us know what to do from there.
My mom and I got back in the car. Looking back, I can’t believe we did the
next two things, but we did. I guess at that point neither of us realized how
serious this situation was. I told my mom I wanted to drop off my homework
at school. (Yes, I’ve always been a nerd.) So, we drove down the road back
to PNHS and I strolled into my English class with Ms. Roderick. I remember
her saying, “Oh shoot. I just marked you absent.” I told her to keep me
marked as absent because I had to go to the hospital. The whole class heard
and my best friends, Jamie, Theresa, and Alli, ran to my side to ask questions.
I told everyone what I knew. Classic fourteen-year-old Kelsey (and let’s be
honest, every-age Kelsey) loved the attention. I hugged my friends goodbye,
walked back out to the car, and told my mom I was STARVING. Again,
classic.
You, the reader, might be shocked by this next sentence.
We went to McDonalds. Hmmm mmm. We did. I know, I know. But I was so
hungry. I needed something quick. We didn’t understand that this was…. like
such a bad idea. LOL. SUCH A BAD IDEA! But, I mean everything ended up
fine, obviously, or you wouldn’t be reading this I guess.
So, we went through the McDonalds drive through. I ordered a cheeseburger,
a large fry, and a large sprite. Now, if you know anything about carb counting,
you know this is a lot. OMG - Sprite, geeze!! Could I have some sugar with
my sugar for my precious daughter’s sugary sugared blood??
Whenever I tell this story, I always mention the McDonalds. I don’t always
mention what I was wearing or that there is a random whale hanging in my
pediatrician’s office. But I always mention the McDonalds. Not because it
was a bad idea or to emphasize how hungry I was, but because this was the
last time, for the next 8 years, 11 months and counting, that I ate something
without THINKING. Type 1 involves so much thinking. Every time I eat,
whether it’s a Thanksgiving meal or a snack on the go, I have to think about it.
I have to prick my finger, I have to do math, I have to inject insulin or enter
information into my pump. I have to make sure it is the right dose and make
any adjustments based on if I’m sick, or if I’m planning on going to the gym
later, or a dozen other things. And that is okay. I am okay with that because I
don’t have a choice. But, I always mention the McDonalds because it was the
last time I ate before I knew I had Type 1. I found a picture of 13-year-old
Kelsey a couple of years ago. I think it must have been the first time I had
looked at pictures in a long while. There she was in the photo, no diagnosis.
I’m typically pretty in control of my emotions, but I lost it. Spontaneously cried.
It hit me what a simple time that was, and we didn’t even know it. I didn’t cry
because I longed for the previous days. I cried because it hit me how much
goes into each and every day for her. I think this is in part what she is
describing in the McDonald’s story.
Finally, after my silly escapades, we headed to the hospital. We parked and
walked into the Emergency Room. My doctor had called and they were
expecting us. The nurse asked us to sit in the waiting room and someone
would be with me soon. We sat for about ten minutes before I started to feel
very sick. My head was throbbing (one of the symptoms I had been warned
about when I called the pediatrician’s office two days earlier), I was nauseous,
I felt faint. My mom told one of the nurses and they took me right away.
I sat with one of the nurses and she told me she was going to check my blood
sugar. It was my first finger prick and the meter read back “639.” I asked her,
“Is that good?” Now, for those of you that don’t know; 639 is NOT GOOD.
NOT EVEN CLOSE TO GOOD! Very bad actually. A normal blood glucose
range is…. are you ready??? 70-120.
Yeah, so, not great. Such newbies, we were.
She walked us back into the exam room and a doctor and nurse walked in.
They had those pale faces with half-hearted smiles we had been seeing all
day.
I barely remember the doctor. I just know there must have been one
diagnosing me. I vividly remember the nurse. Her name was Barbie. As the
doctor explained he was diagnosing me with Type 1 Diabetes and went into
detail about the physiology and blah blah blah, Barbie translated it for both the
fourteen-year-old girl and the panicking mother to understand. (A little
foreshadowing to me realizing I wanted to be a nurse.)
I always found it ironic that her name was Barbie. In our society, Barbie is a
symbol of perfection. Barbie is a symbol of childhood. There I was, being
diagnosed with this imperfection. I would try hard to hold on to my childhood,
but I would have to grow up quickly in some ways in order to manage this
disease. Fun fact, I wrote my college essay on nurse Barbie and this irony.
It’s an amazing essay and I will encourage Kelsey to post it to this blog!
Barbie and the doctor said I needed to urgently go to Boston Children’s
Hospital for further management. I was in the early stages of Diabetic
Ketoacidosis or DKA. (I will make another post about DKA in the future, for
now just know it is a life-threatening form of hyperglycemia.) I was loaded
quickly into an ambulance and off we went. I don’t remember much of the ambulance
ride. I remember my mom holding my hand and telling me we would handle
everything thrown our way. Spoiler alert, we have done just that.
Time passed and before we knew it, I was unloaded onto a floor at Children’s.
They didn’t have any rooms available, so I was admitted into a makeshift...
closet, for lack of a better description. To be fair, it was a big closet. And they
managed to get all of the emergency equipment in there, so that was a plus.
The next few hours were a blur. Everything happened so fast. There were a
lot of questions and tests and exams and medicine and IVs. I remember I
thought the doctor was cute. I was probably embarrassed when he asked
some of the questions. A slew of interns came in and out of the room (closet),
and continued to do so for the duration of our stay. They ALWAYS asked the
same question. “Soooooo, how are you doing with your diabetes?” Huh? Ah,
frightened, kind of in shock, completely ignorant, no precedent for this, did I
mention frightened? That’s what went through my head. Kelsey paused, and
just said, “Um. Good.” We laughed about this throughout our time there, and
still do today.
It was obvious we were going to be there for a while. They would first need to
stabilize my blood sugar and treat the subsequent complications of
dehydration and electrolyte imbalance. Once I was stable, we would need to
stay for some additional days. I needed to be able to leave the hospital with
the skills to manage this disease on my own.
By this point, its evening time… and I’m starving. I asked if I could have
something to eat. I ordered two boxes of Frosted Flakes and a bagel. I
realize now how much sugar that meal contains. I’m glad the nurses and
doctors allowed me to have it though. It was an important lesson (without
knowing it at the time), that I can still eat what I want, as long as I cover the
carbs with insulin. Ah yes, insulin. Carb counting. Injections. This was my first
lesson.
The nurse put all the food out in front of me. She spewed out some gibberish
that went right over my head. It went something like this.
“Okay one box of Frosted Flakes is 46 carbs, you’re having two so that’s 92.
Two milk cartons, 24. So 116. Plus 30 for the mini bagel. Butter is nothing.
146. 146 divided by 15, 9.7. So let’s round down to 9 units. I’ll draw it up.
We’re going to pinch the back of your arm in… one two three (surprise,
injection!). Awesome job. Okay, go ahead and eat. Remember you have to
eat the whole thing because we covered for the whole thing.”
I had no idea what was going on or had just happened. I didn’t care. I
thought I was sick. They have to do this just while I’m sick in the hospital. I’m
thinking at this point, math. Lots of math, every day, from now on. Math.
“Don’t worry, I’ll explain all of that later,” she said.
Cool, whatever. Bon appetite.
You probably guessed it wasn’t a problem for me to eat the whole thing.
When I was done eating, some visitors came to my room (closet). It was my
best friend, Alyssa, and her mom, Pam. Pam was always like a second mom
to me, and one of my mom’s good friends. My sister was away at college,
and we needed some things from home, so they essentially broke into our
house to get what we needed for our stay at Children’s. And, of course they
came to offer support and share some laughs. Which is exactly what we did.
It was a relief and a comfort to be with friends. Pam and I shared the look
only mothers understand. The one that says, “Oh geeze. This is frightening.
So much uncertainty. I feel for you and I’m here for you.” So much in just a
passing glance. I was grateful for her company, and for that look.
Towards the end of their visit we received the exciting news that an actual
room had become available. They moved us to a beautiful large, private room.
I did not take notice of the beauty, or the size. I’ve only just learned upon
reading this that it was an impressive room. We stayed there for the first
night. The nurses came in every hour to check my blood sugar and correct
appropriately. I didn’t get much sleep. I doubt my mom did either, for different
reasons. Word.
In the morning, they broke the news that we couldn’t stay in the private room
and would be moved to a shared room with another young girl also being
diagnosed with T1D. Her name was Katherine. She was 11 and at first the
only things we seemingly had in common were our diagnoses and our shoe
size (8…abnormally large for two young gals). We eventually learned we had
other similarities. We were both interested in music and theatre. We had
differences. I was more of an athlete. More importantly, she hated Justin
Bieber. I was practically signing my name, Kelsey Bieber. I even made a
Justin Bieber wallet out of duct tape in one of the hospital craft rooms. Cute
right. Not creepy. I’ve always had this thought when filing onto an airplane.
When I look around and see children, I tell myself, “This flight will be safe.”
The thought is, “They are young, it is not their time to go.” I’m not an anxious
person in general, but I was then, and there was comfort in being with another
mother and daughter in the same boat (plane).
Katherine and I took diabetes classes together. We were told we could not
leave until we could show that we could manage this on our own. What???
Math, changing scenarios, medications, do’s and don’t, exceptions to the
rules. WHAT??? The nurses would come in and teach us different lessons:
the basics, various situations, challenges, emergencies, etc. We had to learn
carb counting, carb ratios, correction factors, basal doses, how to draw up
insulin, how to give ourselves injections, how to check our blood sugar, how to
recognize and manage a high blood sugar, how to check for ketones, what to
do if ketones are positive, how to recognize and manage a low blood sugar,
how to manage a “sick” day, how to manage and plan for exercise, how
things will change when menstruating… just to name a few. Seriously. I
could write a book on all the things I learned.
I asked a ton of questions, as did my mom. We didn’t really have a choice not
to. In a few days, I would be back at school, living my normal fourteen-year-
old life, but so many things were different. It was overwhelming, but the
system was a well-oiled machine. I had to learn how to give Kelsey a shot.
Another requirement before we could be discharged. They let me practice on
an orange, twice. Then I had to give the shot to her. I did it, and I did just
fine. Much more worthy of note, is that that is the one and only shot I have
ever given to her. Immediately, and not because I didn’t do well, she took
charge. I offered periodically when we first got home, but she always refused.
I have nothing but great things to say about Boston Children’s Hospital.
These nurses and doctors knew what they were doing and knew exactly how
to get the information across. They were patient and explained things several
times until we were all confident in the lesson. My life was being flipped
upside down, I would have to do everything differently, and they gave me the
foundation to live a healthy life, as well as the confidence to live a normal life.
I was constantly encouraged to never sacrifice anything because of this
diagnosis. One nurse told me, “The only things you cannot do are join the
military or become a pilot. For everything else, ask “How can I make this
work,” rather than “Why can’t I do that?” My mom and I recite that quote to
each other from time to time. Like when I had a meltdown because my insulin
pump wouldn’t fit anywhere in my prom dress. Or when I was constantly
reminding her that I’d be fine on Spring Break. Both ended up fine, btw.
Kelsey was also told that adolescents and parents sometimes argue each
other. She was told that she was allowed to argue with me about anything,
anything at all, except diabetes care. That was the one topic that was sacred
and needed to be treated as such. This seemed like a valuable tip at the time.
Over the next few years if there was conflict, this was a contract to which we
faithfully adhered. We never did argue about diabetes care. This is a tip I
share now with moms of T1D newly diagnosed teens or pre-teens.
As overwhelming as everything was, I remember having fun. I remember
laughing a lot. I remember the names of all the nurses. I remember feeling
positive, powerful, inspired. I remember feeling strong the entire time. I never
once doubted I would be able to handle the challenge.
I’m sure some of that came from being so young. Some is just my
personality type, I like to think. There was a touch of blissful ignorance. But
most of it was because of my mom. Huh? Words on this page could never
express how much of a superhero my mom is. I cry just thinking about it
because she is so…. There’s not even a word! She must have been scared,
but she never showed it. She had a smile on her face the entire time. When I
had to give myself shots, she sang silly songs to distract me from the pain. I
was cracking up. Giving myself shots, and cracking up. We made it one of
our little adventures, and we still do.
As I get older, I realize she wasn’t only scared, but she was stressed. My
parents had recently separated. My dad was out of the country teaching
classes on a Coast Guard ship. Money was tight. We had minimal insurance.
In fact, our plan was called “non-catastrophic coverage.” While this wasn’t
exactly a catastrophe and things could have been drastically worse, it wasn’t
your average check-up, and it was life changing. Children’s wouldn’t let us
leave the hospital until we had enough insulin and supplies for a full month. If
you watch the news, you know insulin is dangerously expensive.
She figured it out. As she always does when my sister or I have a problem.
We had incredible support from family and friends. But my mom is a
superhero. She handled it with such grace, strength, independence, humor,
and bravery . I never saw an ounce of her stress or fear. I am so proud to be
her daughter. And I, her mother. Indeed, there are no words.
Anyway, before I cry…
I had other visitors, which was fun. My friend Theresa visited me with her
family, her sister passed out in the hospital. Low blood sugar. Apparently, it
had happened to her before. She was fine, but we always chuckle about it.
Some of my teachers sent cards. Everyone was texting me and I loved the
attention.
Before I knew it, it was time to go. I had passed all the tests, asked all my
questions, knew the resources for when more questions came up (which they
did, and still do). I didn’t want to go. Me neither. I felt safe there. Me too! I
was having fun. I loved the nurses. I loved learning. I loved being in a
bubble where having to do this thing on my own was still a “when.”
Katherine was discharged a few hours before me. She and her mom packed
up their things and handed me a bag. It contained a letter and a necklace
from the gift shop that read “kindness.” The letter explained how much I had
helped Katherine during our time as roommates. She wrote about bravery,
kindness, how we made things fun. She said a lot of the questions I asked,
helped her as well. She said the way I explained things to her when we were
alone really clicked. It meant everything to me.
Then something clicked for me. Diabetes for me isn’t meant to be a death
sentence or a burden. Sure, it will always be a challenge, but it is a challenge
I was meant to face. I was meant to face this challenge because so much
good will come from it. I’ll help people. I’ll learn so much about myself.
I’ll be a nurse. I’ll make a difference just like my nurses did for me.
Type 1 Diabetes has given me so many gifts: a career I am passionate about,
the opportunity to educate others, an amazing community of support. I have
been gifted with incredible friends and family who show me the meaning of
friendship and love every chance they get. I have learned about the strength I
possess. I have been humbled by the support and interest my teachers,
professors, coaches, employers, colleagues, and peers have shown.
Of course, T1D is a challenge. Some days, or parts of days, it is a f***ing
burden! But it always passes. This was another tip offered at the hospital.
“You will have THOSE days. It’s ok. It will pass.” Let me tell you, early on,
THOSE days were dreadful. If you are a parent, you understand that the
worst moments are those in which we are helpless to make things better.
Kelsey was a sophomore in college when at the end of a particularly difficult
diabetes day, she called and apologized for taking it out on me, and added, “It
was just one of THOSE days, Mom. Like they said at the hospital. I’m ok
now.” Once again, I was grateful for the experience we had at Children’s
Hospital, Boston. I always figure it out, relying on various resources and one
heck of a support system. I don’t wish that this had never happened. I would
love for there to be a cure one day, but I wouldn’t change this story. Because
this isn’t just the story of my diagnosis, but this is the story of my life and a key
piece to whom I have become.
I left the hospital with a positive outlook. I went back to school and received
nothing but encouragement from my friends, teachers, and the school nurse,
Nurse Patty. LOVE Nurse Patty. I took it day by day. And I still do.
I choose to celebrate February 9th, as many T1Ds celebrate their
diaversaries, because it is a reminder of how far I have come, how blessed I
am, and how I am still writing this story, in whatever way I want to. I am so
lucky to have this as my story. Other T1Ds are not as fortunate, whether that
be due to presenting with more life-threatening conditions, or lacking support
and means. I am so grateful to be here writing THIS story. I mean I used the
word “fun” five times. (Maybe I’ll invest in a thesaurus for future posts, btw.)
So, thank you for reading my story. I know everyone has one. I hope you are
having fun writing yours as well.
Once again, THERE ARE NO WORDS!