From Fear to Focus: How T1D Shaped My Future

TCOYD Intern Aaron Albanez

20 Years of Diabetes (and Counting) In the Making

This year marks the 20th anniversary of my diagnosis of type 1 diabetes. Well into my late 20s now, it’s hard to believe how much time has passed since that life-altering day.

If you were to look at a retrospective of your life throughout the last 20 years, how would you define it? For me, I would look back at how diabetes became an integral part of my daily routine. Looking back at all the finger sticks, insulin pen injections, low blood sugars, high blood sugars, CGM sensor changes, insulin pumps, and device alarms is enough to make anyone’s head spin. But at the same time, despite the constant challenges that I have dealt with – and continue to deal with – there’s also a sense of accomplishment. I’m sure almost everyone has heard the phrase, “It takes a village to raise a child.” My village was comprised of family, friends, physicians, diabetes organizations, and other people living with diabetes. And the “child” was managing and controlling my diabetes.

Something Was Off

Before my diagnosis, I could tell something was going on. Despite not knowing the specifics, there were a lot of signs and symptoms that made me think: “This doesn’t feel right”. Normally on any given day, I would be scarfing one of my mom’s delicious home-cooked meals. My parents would tell you that I was usually the first among my family to finish their plate. However, right around my diagnosis, I could barely eat anything at all. I didn’t think much of it. All I knew was that I wasn’t hungry. On top of that, I noticed I was urinating a lot more frequently. At times, once I got back to the kitchen table from the bathroom, I would have to go again.

I also noticed that I drank more water than normal. This was accompanied by a weird sensation on my tongue. Later in life, I would recognize this as a thrush that was caused by high blood sugar. The last thing my parents noticed was that I was losing weight. My face thinned out and most of my clothes were either loose-fitting or baggy.

My Diagnosis Day

Then came November 11th, 2003. My mom made a doctor’s appointment. While there, they were running blood and urine tests to see what was going on. Needless to say, I was scared for whatever possible outcome was next. I remember bawling my eyes out while my mom was holding my hand tightly. When the doctor came, there was a look of shock on his face that automatically told me something was wrong. He stated, “You have type 1 diabetes”. At that point, my cries became louder. Admittedly, I didn’t know what diabetes meant or even what it was. All I knew was that it was bad news. Later, I would discover that my blood sugar at the time of my diagnosis was 800 mg/dL. Typically that number should be between 80-120 mg/dL. After that, there was no hesitation in the next steps; I was taken to the local children’s hospital.

My most vivid memory from that day was sitting in an empty waiting area with both my mom and dad. We didn’t say much. There were just somber looks on our faces as we braced for the unknown. What else can anyone say when receiving news this life-altering? After being whisked away to the diabetes unit, there wasn’t much that I can recall about what was happening. I remember many doctors and nurses giving instructions and support to my family. I remember having injections around the clock while screaming and crying louder than other children in the unit. There was much that was happening without a clear explanation, but having a TV and GameBoy in the room did soften the blow.

The “New Normal”, Diabetes Camp, and TCOYD

From the moment I left the hospital, my life was officially changed. Simple as that. Gone were the days when I could just eat as much as I wanted. Now it was a constant cycle of meals at specific times, injections, sugar-free drinks, routine appointments, hypo awareness, and (my personal favorite) cloudy and clear insulin mixtures. It was even clearer around times like Valentine’s Day and Halloween whenever there was candy. Instead of eating as much candy as I could in one sitting, it was saved for when my blood sugar was low. I was starting to worry if a “normal life” was in the cards. However, that changed after the summer of 2005.

My parents enrolled me in a summer camp. However, this wasn’t like other summer camps. This was one meant for people with diabetes: Camp Wanakura. On top of normal summer camp activities such as archery and swimming, we also learned valuable skills that we could use to manage our diabetes. I still remember the theme of that year: Safari. I was in the “Kiwi Kiwi Birds”. It was nice to connect with other kids who were going through the same experience. Despite having snacks with carbs counted for us and as much Crystal Light as we could drink, Camp Wanakura was like the typical summer camp most people think about. This was the first instance where I felt like I could adapt to this “new normal”. Although much time has passed since Camp Wanakura, one memory still resonates to this day. It was the final day. We all worked on a song that we presented during the send-off. I don’t remember the name of the song, but I remember the lyrics: “No pumps. No bumps. No bruises. No shame. Just fight for a cure that we can claim. Bring it on!”

Following that summer, the next few years felt like a blur. I learned very quickly that diabetes was a balancing act: a constant job to maintain my blood sugar levels while incorporating a healthy diet and exercise regimen. This was further maintained once I started using new devices and technologies such as a CGM and a hybrid closed-loop system. However, around 2010 I attended a diabetes conference in San Diego, CA that made me reflect on my diabetes self-management. That conference was TCOYD®. Needless to say, attending this conference made me feel more connected with the diabetes community at large. Getting first-hand knowledge of the latest advances in diabetes management and technology was insightful and useful. Not to mention learning valuable skills from cooking classes, seminars, and workshops only further honed my self-management skills. This would become even more crucial once my younger brother, Armando, was diagnosed with type 1 diabetes in 2012. Although this experience was just as life-altering as 2003, there was a shared sense of relief amongst my family in knowing that we were competent and skilled at managing diabetes. It was the culmination of skills, experiences, and knowledge from all my years of dealing with diabetes that helped my younger brother take control as well. Through helping each other out in our diabetes management, we have both made strides in self-managing our diabetes and continue to look for ways to help others.

Looking Back, Then Moving Forward

My experience, combined with a sense of advocacy and the skills I aquired from diabetes self-management, helped with aligning my career goals. My early experiences solidified my desire to continue serving others with diabetes. After finishing college, I decided to further my education by obtaining a Master’s in Public Health with an emphasis on Health Education and Promotion. I hope that my background and personal experience can benefit in creating programs, interventions, and strategies that positively impact those living with diabetes around the world.

Being diagnosed at such a young age helped. Honestly, I can’t remember what my life was like when I didn’t have to follow a routine or give myself insulin or other medications. Over time, I’ve learned to accept that diabetes was never a hindrance to having a “normal life”. I’ve been able to use my experience as a foundation for my career goals, values, and skills that were acquired through living with diabetes. I hope that I can continue to use my experience and knowledge to make impacts in public health as both a healthcare professional and patient advocate. As I remembered from my early days of diabetes camp, “Bring It On!”

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    Incredible story, Aaron! What an inspiration you are to kids, and adults, going through their own diabetes journey. Can’t wait to read more of your articles!

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    Sounds remarkably similar to my son’s journey. Dx at age 10, 30 years now. The most poignant memory was him asking me in the hospital “am I going to die”. Still breaks my heart. I am now a NP, CDE, BCADM. What a challenge, and so much progress!

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      Yes indeed, and sounds like you did an amazing job, Nancy! And to also pursue a career in nursing and diabetes management…hats off to you!

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    Thank you for sharing. My diagnosis was 1975 and I wasn’t afraid, I was mad. I was taken away from a school basketball game for a Dr. Appt and straight to the hospital. I wanted to finish that game! Bot much knowledge from doctors in my small little town. Yes, the mix of cloudy and clear insulin. I had 5 siblings so watching what I ate,1200 calorie diet was difficult. Attended a camp for 2 weeks for diabetics that included doctors, nurses, dieticians and counselor who were all t1. Changed my life. I am grateful everyday that I am here. I remember my doctor telling me I would be dead by 40, blind,loss limbs, kidney failure and heart disease. I have my vision, limbs, kidney function, minor heart disease but still kicking. Keep sharing, educating. Thank you!

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