The Diagnosis

I barely remember what happened during the days following my diagnosis with type 1 diabetes. I don’t even think I remember when I truly found out what type 1 diabetes was. In fact, I had to have my mom look over my version of the story to make sure my memory was accurate, and there were so many aspects of her side of the story I don’t remember to this day. For those who don’t know, type 1 diabetes is an auto-immune disease where a person’s antibodies destroy beta cells produced in the pancreas, causing them to stop producing insulin. Insulin transports the sugar from the food they eat from their blood into their cells. The destruction of theses insulin-producing cells prevents the body from getting the energy it needs unless insulin is manually injected. Type 1 diabetics need to monitor the amount of sugar in their blood to make sure it's not too high or too low. This is a disease that the individual must live with for the rest of their lives once they’re diagnosed. Even though progress is being made in developments towards 3D printed pancreases and experimental drugs to delay its onset, there is no cure as of this writing. Even though I've forgotten a lot of what happened after the diagnosis, I’ll never forget the actual diagnosis day. From then on, my life would never be the same.

It was early morning on September 1, 2013. I remember the time as somewhere around 5:30 am, but when I asked my mom about that day to see what she remembered, she told me she remembers it as more like 4:00 am. Regardless of what time it was, I had woken up maybe a half-hour earlier and was having trouble getting back to sleep, probably jostling around my bed trying to relax and fall asleep again. I finally got up and walked into my parent’s bedroom, which is adjacent to mine, to wake my mom and tell her I couldn’t sleep. I shook her awake, and what I remember next was her waking up, looking up to see me, and gasping at how sunken in and pale my face was. That's all I recall from that morning. My mom, however, remembers a different sequence of events. She remembers getting up after I shook her awake and told her I wasn't feeling well, then walking into a better-lit room to get a better look at my face and realizing how terrible it looked. I had looked unwell for a couple of days prior to this, but the fact that I still looked sickly and pale that morning was what made my mom realize it was time to take action and do something about it. She went back into the bedroom, woke my dad up, and told him we needed to go to the emergency room. My dad groggily asked her, “Now?” She responded, “Yes. Now.” He got up with no hesitation after that.

We rushed to the emergency room, my parents and I grabbing whatever we could for entertainment as quickly as possible. I remember the drive there, probably watching a movie on my DVD player on the way. I also remember being brought into the hospital room on a gurney, but I think that event was one my memory created for dramatic effect. What actually happened was I was checked in to the emergency room at Avista Hospital (in my pajamas) and stabilized there. I was supposed to get together with a friend of mine that day and go to the Gilpin pool with her -- have a "pool party," as I kept saying. I remember asking my parents continuously if I would still be able to go to the pool party. Obviously, that answer was a resounding no. I still held out hope that I would be able to go. I hoped I would be released from the hospital by the end of the morning and I would still be able to make it to the pool on time to hang out with her, swim around and drink sodas that I would bring with me in a cooler. It was only when I heard the doctor giving the official diagnosis to my parents at Avista that I realized I was hoping against hope. My mom had suspected I had type 1 diabetes for a couple of weeks before diagnosis and even had a conversation with her sister where she told her she thought I may have diabetes. Her sister said that she was probably overreacting and that it couldn't be type 1 diabetes. Well, it turns out that's what it was. (Apparently, my mom later had another conversation with her sister where the sister said something to the effect of, “Oh my God, you were right.”) The term was so scary for me at the time. I had no idea what it meant. All I knew was it was one of those medical terms that was thrown around as something you never want to have, like cancer or something. Now I had it. Now I had to truly understand what it meant.

I was transferred to the emergency room at the nearby Children’s Hospital in Aurora, which to this day is the only time I have ever been on an ambulance. I remember laying down on the gurney (this time, I actually was on a gurney) in that ambulance, struggling to stay awake, and that’s all. I thought I stayed in the same room in the same hospital bed for the next two days, but apparently, I did change rooms and beds a couple of times once I arrived at Children’s. The diagnosis having been confirmed, IVs were inserted into my arm with various fluids (insulin, glucose, potassium, etc.) to bring down my enormously high blood sugars and correct other damage done to my body. I was in diabetic ketoacidosis, which means that my body was producing ketones that made my blood acidic. I was on a cardiac monitor to evaluate my potassium and oxygen levels, my electrolytes had to be corrected, metabolic imbalances had to be fixed. I was not allowed to eat or drink anything except for small ice cubes every couple of hours -- and that was only because my mom, a retired nurse, begged the staff of the hospital to give me something to tide me over for the next couple of days, even if it was just ice cubes. She knew how terrible it was to be given barely any fluids at all for days, and she didn’t want me to suffer that. I was weak, barely functioning, not thinking clearly. The friend I was supposed to go to the pool with came to see me the afternoon I was diagnosed and gave me a giant stuffed panda as a get well gift. My mom told me later that when my friend first saw me in the hospital, a frightened look spread across her face as she realized how terrible and sickly I really looked. I didn't notice the frightened face, though. I wasn’t thinking clearly enough to notice and probably wouldn't have either way. For me, it was just great to see her and I was so happy to get a gift from someone who genuinely wanted to see me get better. Looking back, it was also great to see her there to make up for not being able to hang out with her that day. At least I still got to see her somehow.

I was stuck in my hospital bed, desperate for and craving the next time I could have my ice cubes whenever I finished sucking the previous batch. I remember laying in my bed, weak beyond belief, a DVD player on my lap watching Bee Movie to take my mind off of the situation (hey, give me a break, I was 11). I had to be given potassium first through IV, then orally one or two times during the stay. My mom told me I was the only person she ever saw who didn’t throw up after being given the potassium, and remember, she is a retired nurse. I can believe it, to be honest; I don't blame Mom's other patients for hurling after tasting that. Finally, after two days, I was discharged from the hospital and given a meal of my choice. I had to go to an orientation at the nearby diabetes center, The Barbara Davis Center for Childhood Diabetes, soon after so that I could learn about what my parents and I had to do to manage my diabetes. Apparently, I didn’t even manage to stay awake for the orientations. I cuddled up and slept with a pillow and blankets that my parents brought for me while they went through the orientation. All I really remember from any of the orientations was the terror I felt after realizing I would have to take a shot and poke my finger every single day, multiple times a day for the rest of my life. I didn’t care how small the needle was, I hated shots and needles in general and I couldn’t believe I had to do that for the rest of my life.

Sure, I had symptoms that were, in fact, all symptoms of type 1 diabetes, but none of us would have truly guessed that’s what I had until diagnosis. The symptoms started becoming obvious in my memory during my first week of middle school. I started losing weight, craving water (I don’t drink much water in general), and losing energy, struggling to even walk up one flight of stairs at my school. My mom knew something was wrong longer than that; the symptoms became obvious to her around the last two weeks of August. The instructor of a fly fishing workshop I attended that summer even noticed something was up, but neither he nor my mother could put their finger on what. My mom bought me new clothes because on the outside, it looked like I was having a growth spurt. However, sometime before I was diagnosed, she weighed me and realized I had lost a significant amount of weight. That’s when warning signals started going off in her head and she realized something was truly wrong. Once we found out that I did, in fact, have type 1 diabetes, none of us wanted to believe it. None of us wanted to live the reality we realized we were now forced to live for the rest of our lives.

That next school year was one of, if not the, hardest school year of my entire life (this past school year comes pretty close for different personal reasons). I missed about a month of my first year at a new school, not only because of diabetes but also because about two weeks after I was diagnosed, something else happened that was just as scary. After one of our follow-up diabetes appointments, my mom, who usually takes the time to look around and notice the weather around her (because meteorology interests her), was so focused on getting me home safely and taking care of me she didn’t notice three days of constant rain. One morning, my mom’s other sister called to make sure we were okay and my mom didn’t know why. That’s when we found out Boulder County was completely flooded. Our normal driving routes were completely washed out. Apparently, there were no routes we could take to get me to school or to get down to Boulder for prescriptions for my diabetes for 4 or 5 days afterward. I struggled to catch up with all of the work from the three weeks of school I missed. That first month, my family and I cried more than we have in our entire lives. I won’t lie, I thought about killing myself. I never went as far as to plan anything out, but the month following diagnosis I often found myself wondering if life was worth living anymore. I could never get my old life back, and I had trouble accepting that.

Now, almost six years later, I feel like I'm managing my diabetes better than ever before. Admittedly, my blood sugars are really labile most of the time (partly because I’m a teenager, I guess), but I’m more confident with my decision-making about when to increase or cut back on the amount of insulin I take, what I need to eat or drink when I have low blood sugars (depending on how low they are), and when I truly need to ask my parents for help to manage my diabetes and keep my sugars stable. Sure, I’m not perfect at managing, but who is? I’ve heard multiple people, including from Barbara Davis (where I still go for tri-monthly appointments and where quite a few of the workers have type 1 themselves), say that diabetes is an art form, and they are absolutely right. It’s hard to predict when my blood sugars will go haywire because there are so many factors I have to think about and sometimes forget to think about or don't even consider. There’s the food I eat, the insulin I take, the amount of exercise I have, hormones like adrenaline that can raise my blood sugars, making a decision thinking my blood sugars will rise and they end up dropping (and vice versa), and so many more that I can’t even think of off the top of my head.

Even now, there are days where I want to push diabetes aside and pretend that I don’t have it (including after writing and re-drafting this article). There are days where I wonder if it’s worth fighting a battle that I know I will never truly win. However, when I stop and think about it, I realize there are so many things in my life that I appreciate and enjoy doing and that make it worth it to keep on living. Music, theater, writing, movies, YouTube, learning, friends, family -- all of these things keep me going because of how much I enjoy them. In retrospect, if you asked me if I would change a single thing about my life, I would say no, I wouldn’t. Type 1 diabetes has helped me take on the responsibilities of a challenging world and allowed me to feel more confident about handling life on my own. The November after diagnosis, after talking to my mom about my suicidal thoughts, she found a therapist for me who I still visit to this day, who my mom eventually started visiting herself, and who I would now consider a family friend. It may be an absolutely terrible disease that I ultimately wish I never had, but I’m in a place now where I realize it doesn’t have to control or define me or my life. At this point, I’m not going to let it.