Personal Narrative: Living With Type 1 Diabetes
I was four years old when my life came to a crashing stop. I have had people tell me that there is no way that I could so clearly remember something that happened to me at just four years old. My family has filled in some details for me, but there are things that I remember as if they only happened yesterday. It all started during the last week of January 2000. I had caught a cold. It was no big deal. A couple of days of rest and some fluids and I would be just fine. At least that is what the doctors told my parents. Why then, after a couple of days was my condition only worsening? After fighting the cold for one week things took a turn for the worst. I was drinking more than I ever had before. However, I could not keep any liquids in me.
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As fast as I was drinking I was urinating. Solid foods were no good either. I could not hold anything in my stomach. I was so weak that I just sat on the couch and watched television and slept all day every day. At the end of the first week my parents took me to the doctor again. The doctor assured my parents that everything was just fine. What they thought was a common cold was actually the flu. The doctor said that I had probably seen the worst of it and would surely start to get better in the coming days. My mother was supposed to be leaving for Las Vegas in a couple of days for a girl’s trip with my aunts and grandmother. My mother was insisting that she stay home and take care of me. My father continuously told her that he would be able to take care of my brother and I. He would be able to take off work and would have everything covered. After hours of talking things over, he persuaded my mother to take the trip that she had been planning for months. Over the next few days my condition continued to worsen once again. I was starting to rapidly lose weight. I was so weak that my father would have to carry me to and from the restroom. After a few days he decided that he could no longer handle the situation and that he needed to call my mother to come home. The next day, February 12 2000, my mom, my aunts, and my grandmother all got on a plane to come home. My dad, brother, and I picked up my grandfather and drove to the airport to meet everyone that afternoon. Everyone was so worried that they practically ran off the plane to get to me. My mother took one look at me and knew that something was horribly wrong. We all drove straight to Children’s Hospital from the airport. I vividly remember the white walls of the hospital. I remember the smell in the air, something like a mix of vinegar and bleach. I felt as though I was standing still and everyone else was rushing around me. I was so scared because I had no idea what was going on and I was not feeling well. This was the first time I would hear the words ‘blood sugar’ and ‘insulin’ which are now part of my every day vocabulary. The doctors knew immediately that I did not just have the flu. When they tested my blood sugar the results were shocking. A normal person blood sugar should be around 120. Mine was in the 900’s. Next thing I knew there were nurses and doctors surrounding me. I was quickly being hooked up to big scary machines. This scene would be quite overwhelming for anyone, let alone a four year old. My parents were the only ones allowed in the room with me, the rest of my family had to wait in the hall. I remember my dad crying. I had never seen him cry before so I knew that something was wrong but I did not understand what was going on. I was so confused. A little while later things started to calm down. I was admitted to a room in the Intensive Care Unit. I would share this room with another little girl named Abby for the next week. My family was allowed to come in and see me. They all looked like they had been crying. Everyone was hugging me. More and more family members were showing up. I still had no idea what was going on. I was starting to feel like myself again, so why was I still stuck in the hospital? More time passed and I started to get tired so I closed my eyes but I could not sleep because I was still so scared. The doctors and my parents assumed I was sleeping and they started to talk about what was going on. I hear words like ‘disease,’ ‘life-long,’ ‘incurable,’ ‘shots,’ and finally Type 1 Diabetes. This left me even more confused. What was going on? Over the next few days the doctors were in and out of my room hourly. They kept poking my fingers. I was still hooked up to an IV. More and more family members kept coming to see me. I remember very specifically watching Tarzan with my Aunt Kelly. She would always have to leave when visiting hours ended and the movie would not be over. When she would come back the next day we would start Tarzan from the beginning. To this day I still do not know how Tarzan ends. Abby and I would do arts and crafts together and sometimes we were even allowed to go down the hall to the playroom which had videogames. I still did not really know what was going on but I was feeling better and I had made a new friend so I was not really worried anymore. The day that I was set to be discharges from the hospital the doctor introduced me to a group of people that he referred to as my ‘team.’ This ‘team’ would be with me for the next fourteen years until I turned eighteen. The group of people were my diabetes team. There was a dietician, a psychiatrist, and an endocrinologist. These were the people who told me why I had been so sick and why I had spent the last week in the hospital. These were the people who told me that I had Type 1 Diabetes and that my life would never be quite the same. They first explained to my parents and I that there was nothing we could have done to prevent my situation, I was just unlucky. They then explained that there was nothing that we could do to make my diabetes go away, we could only manage it. They taught me that I would have to test my blood sugar at least eight times a day by poking my fingers. They explained to me what range my blood sugar should be within and what to do when it was not within that range. They taught me how to give myself shots every morning, every night, and before I ate or drank anything with carbohydrates. We were given a big box of supplies and a list of numbers to call in case we had any questions and we were sent on our way. Life with diabetes took quite a lot of adjusting. I could no longer eat or drink what I wanted or even when I wanted. I was put on a strict diet and schedule. My parents quickly taught me how to test my own blood sugar but they had to do my shots for me for a while. I still remember how exited I was when I prepared and gave myself my first shot. It was such an exciting feeling for me. I now had the independence to be away from my parents because I could take care of myself! Diabetes care technology is rapidly advancing. For the last ten years I have not had to give myself shots. Instead, I wear what is called an insulin pump. It is attached by a small cannula under my skin. It gives me insulin every hour. I no longer have to have such a strict diet or schedule because I can just tell my pump what I had to eat and it calculates and delivers the proper amount of insulin for me. As of just a month ago I also got a device called a Continuous Glucose Monitor, or CGM for short. My CGM, like my pump, is attached using a small cannula under my skin. It tests my blood sugar and sends my numbers to my phone every three minutes. No more poking my fingers (for the most part). The advancements in technology have made living life with diabetes much easier. However, every day I remember that I am living with a life threatening disease and if I do not take care of myself there are serious consequences. While living with Type 1 Diabetes for the last sixteen years has come with many trials, mental breakdowns, scares, and a lot of pain, it has not been all bad.
In fact, I am often thankful for the hand I have been dealt. First and foremost, I am happy that I am the one with diabetes and not my brother or sister. I would not wish this disease on my worst enemy. Second, my diabetes has shaped me into the person I am today. Diabetes taught me to be responsible at a very young age. At four years old I had to learn the science, math, and statistics to keep myself alive. People often say that diabetics are scientists, mathematicians, and doctors all in one. Diabetes has also taught me a lot of patience and that things do not always (sometimes even rarely) go my way. As fast as technology changes, so do my medical needs. From day to day my insulin needs change and I have had to learn to incorporate that into my already busy and sometimes stressful life. Lastly, diabetes has brought me friends that I now call family. For ten years I got to attend a week long summer camp that was for type 1 diabetics only. Often times diabetes can feel quite lonely. There are times when I feel as though no one understands what I am going through. Then I remember that I have my camp friends. Even though we have not attended camp for the last three years we still all talk almost every day and get together every once in a while. At any given time I can call them and they will know exactly what I am going through. They are some of the strongest and most supportive people that I
know. As previously stated, diabetes is not all bad. With all of the terrible times it has brought me, there have been just as many good times. What I am out to do now is inform and educate others. Many people are misinformed about the difference between Type 1 and Type 2 diabetes. This is incredibly frustrating to Type 1 Diabetics. Type 1 is an autoimmune disease. Doctors are still not entirely sure what causes it but we do know that our immune system got mixed up and started attacking our insulin producing cells. There is nothing that we could have done to prevent it and there is still nothing we can do to stop it, although some researchers may be getting close to a ‘cure.’ Type 2 diabetes is due to excess weight. In type 2 diabetes the body still produces insulin, but not enough. This can usually be cured by taking pills and/or more exercise and a better diet. Type 1 Diabetes is a daily struggle and is life threatening which is why we sometimes get offended when people tell us that we would get better if we ate different foods or did different exercises. I hope to be able to continue to educate people about the difference between Type 1 and Type 2 diabetes, and I hope that you now have the information to help educate someone too.
As fast as I was drinking I was urinating. Solid foods were no good either. I could not hold anything in my stomach. I was so weak that I just sat on the couch and watched television and slept all day every day. At the end of the first week my parents took me to the doctor again. The doctor assured my parents that everything was just fine. What they thought was a common cold was actually the flu. The doctor said that I had probably seen the worst of it and would surely start to get better in the coming days. My mother was supposed to be leaving for Las Vegas in a couple of days for a girl’s trip with my aunts and grandmother. My mother was insisting that she stay home and take care of me. My father continuously told her that he would be able to take care of my brother and I. He would be able to take off work and would have everything covered. After hours of talking things over, he persuaded my mother to take the trip that she had been planning for months. Over the next few days my condition continued to worsen once again. I was starting to rapidly lose weight. I was so weak that my father would have to carry me to and from the restroom. After a few days he decided that he could no longer handle the situation and that he needed to call my mother to come home. The next day, February 12 2000, my mom, my aunts, and my grandmother all got on a plane to come home. My dad, brother, and I picked up my grandfather and drove to the airport to meet everyone that afternoon. Everyone was so worried that they practically ran off the plane to get to me. My mother took one look at me and knew that something was horribly wrong. We all drove straight to Children’s Hospital from the airport. I vividly remember the white walls of the hospital. I remember the smell in the air, something like a mix of vinegar and bleach. I felt as though I was standing still and everyone else was rushing around me. I was so scared because I had no idea what was going on and I was not feeling well. This was the first time I would hear the words ‘blood sugar’ and ‘insulin’ which are now part of my every day vocabulary. The doctors knew immediately that I did not just have the flu. When they tested my blood sugar the results were shocking. A normal person blood sugar should be around 120. Mine was in the 900’s. Next thing I knew there were nurses and doctors surrounding me. I was quickly being hooked up to big scary machines. This scene would be quite overwhelming for anyone, let alone a four year old. My parents were the only ones allowed in the room with me, the rest of my family had to wait in the hall. I remember my dad crying. I had never seen him cry before so I knew that something was wrong but I did not understand what was going on. I was so confused. A little while later things started to calm down. I was admitted to a room in the Intensive Care Unit. I would share this room with another little girl named Abby for the next week. My family was allowed to come in and see me. They all looked like they had been crying. Everyone was hugging me. More and more family members were showing up. I still had no idea what was going on. I was starting to feel like myself again, so why was I still stuck in the hospital? More time passed and I started to get tired so I closed my eyes but I could not sleep because I was still so scared. The doctors and my parents assumed I was sleeping and they started to talk about what was going on. I hear words like ‘disease,’ ‘life-long,’ ‘incurable,’ ‘shots,’ and finally Type 1 Diabetes. This left me even more confused. What was going on? Over the next few days the doctors were in and out of my room hourly. They kept poking my fingers. I was still hooked up to an IV. More and more family members kept coming to see me. I remember very specifically watching Tarzan with my Aunt Kelly. She would always have to leave when visiting hours ended and the movie would not be over. When she would come back the next day we would start Tarzan from the beginning. To this day I still do not know how Tarzan ends. Abby and I would do arts and crafts together and sometimes we were even allowed to go down the hall to the playroom which had videogames. I still did not really know what was going on but I was feeling better and I had made a new friend so I was not really worried anymore. The day that I was set to be discharges from the hospital the doctor introduced me to a group of people that he referred to as my ‘team.’ This ‘team’ would be with me for the next fourteen years until I turned eighteen. The group of people were my diabetes team. There was a dietician, a psychiatrist, and an endocrinologist. These were the people who told me why I had been so sick and why I had spent the last week in the hospital. These were the people who told me that I had Type 1 Diabetes and that my life would never be quite the same. They first explained to my parents and I that there was nothing we could have done to prevent my situation, I was just unlucky. They then explained that there was nothing that we could do to make my diabetes go away, we could only manage it. They taught me that I would have to test my blood sugar at least eight times a day by poking my fingers. They explained to me what range my blood sugar should be within and what to do when it was not within that range. They taught me how to give myself shots every morning, every night, and before I ate or drank anything with carbohydrates. We were given a big box of supplies and a list of numbers to call in case we had any questions and we were sent on our way. Life with diabetes took quite a lot of adjusting. I could no longer eat or drink what I wanted or even when I wanted. I was put on a strict diet and schedule. My parents quickly taught me how to test my own blood sugar but they had to do my shots for me for a while. I still remember how exited I was when I prepared and gave myself my first shot. It was such an exciting feeling for me. I now had the independence to be away from my parents because I could take care of myself! Diabetes care technology is rapidly advancing. For the last ten years I have not had to give myself shots. Instead, I wear what is called an insulin pump. It is attached by a small cannula under my skin. It gives me insulin every hour. I no longer have to have such a strict diet or schedule because I can just tell my pump what I had to eat and it calculates and delivers the proper amount of insulin for me. As of just a month ago I also got a device called a Continuous Glucose Monitor, or CGM for short. My CGM, like my pump, is attached using a small cannula under my skin. It tests my blood sugar and sends my numbers to my phone every three minutes. No more poking my fingers (for the most part). The advancements in technology have made living life with diabetes much easier. However, every day I remember that I am living with a life threatening disease and if I do not take care of myself there are serious consequences. While living with Type 1 Diabetes for the last sixteen years has come with many trials, mental breakdowns, scares, and a lot of pain, it has not been all bad.
In fact, I am often thankful for the hand I have been dealt. First and foremost, I am happy that I am the one with diabetes and not my brother or sister. I would not wish this disease on my worst enemy. Second, my diabetes has shaped me into the person I am today. Diabetes taught me to be responsible at a very young age. At four years old I had to learn the science, math, and statistics to keep myself alive. People often say that diabetics are scientists, mathematicians, and doctors all in one. Diabetes has also taught me a lot of patience and that things do not always (sometimes even rarely) go my way. As fast as technology changes, so do my medical needs. From day to day my insulin needs change and I have had to learn to incorporate that into my already busy and sometimes stressful life. Lastly, diabetes has brought me friends that I now call family. For ten years I got to attend a week long summer camp that was for type 1 diabetics only. Often times diabetes can feel quite lonely. There are times when I feel as though no one understands what I am going through. Then I remember that I have my camp friends. Even though we have not attended camp for the last three years we still all talk almost every day and get together every once in a while. At any given time I can call them and they will know exactly what I am going through. They are some of the strongest and most supportive people that I
know. As previously stated, diabetes is not all bad. With all of the terrible times it has brought me, there have been just as many good times. What I am out to do now is inform and educate others. Many people are misinformed about the difference between Type 1 and Type 2 diabetes. This is incredibly frustrating to Type 1 Diabetics. Type 1 is an autoimmune disease. Doctors are still not entirely sure what causes it but we do know that our immune system got mixed up and started attacking our insulin producing cells. There is nothing that we could have done to prevent it and there is still nothing we can do to stop it, although some researchers may be getting close to a ‘cure.’ Type 2 diabetes is due to excess weight. In type 2 diabetes the body still produces insulin, but not enough. This can usually be cured by taking pills and/or more exercise and a better diet. Type 1 Diabetes is a daily struggle and is life threatening which is why we sometimes get offended when people tell us that we would get better if we ate different foods or did different exercises. I hope to be able to continue to educate people about the difference between Type 1 and Type 2 diabetes, and I hope that you now have the information to help educate someone too.