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). 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.
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.
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 isn’t really 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 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 lets get back to the story. I began to have all of these symptoms. Looking 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.
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 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.
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.
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.
Something was wrong and it was becoming more and more obvious. My mom googled my symptoms Tuesday night. We stupidly thought, no way it’s diabetes. But, I had a physical planned for the next morning anyway, so we would get everything figured out then.
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 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.
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 always 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, and said Dr. Ingalls 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 back 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. This is strongly 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. 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.
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. 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. 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.
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 it 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.
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, 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. Very bad actually. A normal blood glucose range is…. are you ready…. 70-120.
Yeah, so, not great.
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.
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 quickly loaded 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 make-shift... 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's 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.
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 several additional days of education. 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 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 lets round down to 9 units. I’ll draw it up. We’re going to pinch the back of your arm in… one two three. 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 in the hospital while I’m sick.
"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 at college, so they had essentially broken into our house to get some clothes for our stay at Children’s. And of course came to offer support and share some laughs. Which is exactly what we did.
Towards the end of their visit we received the exciting news that an actual room had become available. They moved us to a beautiful private 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.
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 some other similarities. We were both interested in music and theatre. I was more of an athlete though. She also hated Justin Bieber and 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.
Katherine and I took diabetes classes together. 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 have nothing but great things to say about Boston Childrens 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 to 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 melt down that 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.
As overwhelming as everything was, I remember having fun. I remember laughing a lot. I remember all of the nurse’s names. 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 I like to think. There was a touch of blissful ignorance. But most of it was because of my mom.
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 on Coast Guard duty. 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, still, 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.
Anyway, before I cry…
I had other visitors, which was fun. My friend Theresa visited me with her family and her sister passed out in the hospital. She was fine, but we always chuckle about it. Some of my teachers sent cards. Everyone was texting me, 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. I felt safe there. I was having fun. I loved the nurses. I loved learning. I loved being in a bubble where doing 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. 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. 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 be my story. Other T1Ds are not as fortunate. Whether that is due to presenting in 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.