Hey There

My story starts in November of 2007 when I was only 6 years old. The first signs of Diabetes made their appearance when I started losing weight even though I was eating and drinking a lot more than usual. These signs would later be joined by nausea, vomiting, irritability, tiredness, weakness and dizziness.  After multiple doctor's visits and being mistreated for the flu, UTI and any other sickness that comes with similar symptoms we headed off to spend thanksgiving with my aunt and uncle (who are both doctors) in Chicago. 

 

I remember the feeling like it was yesterday. I was 6 years old. I knew I was sick. I knew nobody could figure out why. I was terrified that there was something really wrong with me. If the doctors can’t figure it out the first couple of visits then it had to be bad right? I remember thinking why wasn’t anybody helping me,or why wasn’t I getting better. Everybody around seemed to be on eggshells just waiting for some kind of diagnosis, but Diabetes was the last thing anybody expected. Nobody else in my family had it. Why would I have it?

 

The first time diabetes was mentioned was on our trip to Chicago. My mom was explaining all of my symptoms to my aunt and uncle when my cousin had mentioned that maybe it was diabetes. They had been learning about it in school and I had all the symptoms. At 6 years old I had no clue what that meant, but it didn’t sound good.

 

After a rushed trip back home we sat in the doctor's office first thing on Monday morning. This was the day that it all began. I remember my mother explaining to the doctor what she thought was going on and his willingness to test that theory. I remember the orange drink sitting on the window sill after my doctor had told me to drink. I remember the screaming coming from my own lips the first time they poked my finger to check my blood sugar. I also remember the look on everyone in the room's face when it came back extremely high. 

 

That day my mother took me straight from the doctor's office on a three hour drive to Little Rock Children's Hospital. She was doing everything she could to keep me awake although I just wanted to sleep. I knew we were going to a new hospital but I didn’t fully understand why we needed to go this far to see more doctors. 

 

The night we arrived at Children's hospital was filled with test after test to be sure they knew what was going on before they treated me. My mom was pacing the room while I cried and cried over all of the needle sticks. I begged and begged for her to just take me home and that I’d get better all by myself. Of course 6 year old me didn’t know that was impossible.

 When all of the test results came back I was admitted to the hospital with a blood sugar over 900 and in diabetic Ketoacidosis. Ketoacidosis is a complication of diabetes that occurs when someone's blood sugar runs too high for too long. A chemical called ketones starts to rise and travel through the bloodstream and becomes deadly. The doctors were surprised that I was still conscious and not in a coma or dead. 

 

Over the next few days I was tested for many different causes of high blood sugar. I received my first I.V and my first ever insulin shot on December 1st 2007 with no idea at the time that there would be thousands of more shots and plenty more I.V sticks. This was also the day that I was supposed to attend the Best of Both worlds Miley Cyrus concert right down the street from the hospital where I was being treated. At 6 years old this was a big deal! I was missing what I thought was going to be the best day of my life.

 

 I screamed and cried and begged the doctors to let me leave. I promised I would come right back afterwards. I didn’t understand that what I had was life threatening and that I couldn’t leave. I stood at the window right outside my hospital room on the 4th floor and watched the fireworks and bright lights from the show that I was missing. 

 

December 4th 2007 we got the official diagnosis from my first ever endocrinologist who was a God sent. That day my mother received a call from a family friend, Bret Micheals, who was offering to send me to a diabetes camp every summer for one week. After much convincing my mother agreed. 

 

A few weeks later I returned to school with a red binder placed in the school office, and every classroom that I would be in. My mother spent many days at the school educating staff and school nurses about Type One Diabetes. We lived in a small town where T1D is not common. The school at that point in time only had one other Diabetic who was a few years older than me. I can’t thank her family enough for their support during that time of my life.

 

Going back to school was terrifying. I would no longer have the comfort of my mother, and would have to trust that the school nurses would give me the right amount of insulin to live. This is where I would see my friends for the first time since getting sick. I would explain to them over and over all of the information that was carved into my brain in the best way a 6 year old could. None of them would fully understand what I was going through or why I was constantly in the nurse's office. This is when the isolation and bullying would begin. 

 

 We would now be entering what is called the honeymoon phase. The honeymoon phase occurs around 3 months after receiving treatment for diabetes. The beta cells would slowly begin dying off and the symptoms of diabetes can even decrease. A person with diabetes may even need less insulin than needed before. The phase can last anywhere from a month to years depending on the person. During this time I had little to no issues with diabetes. I had adjusted to my new normal and was starting to believe that this wasn’t so bad. For me this phase would last around 2 years. 

 

During those 2 years I would attend Diabetes camp for the first time. This is where I would meet other kids who were just like me. I made friends who also had diabetes and were going through the same struggles I was. I remember the first time I went to camp. I had finally felt like I belonged somewhere. There were other people who understood me and the feeling of isolation got so much better. I made friends that I still keep in touch with. This was a lifesaver when it came to battling high school. Camp was the place where I learned to come to terms with my diagnosis, but also learned how to deal with all the struggles that were to come. 

 

When my honeymoon phase was over I was around 8 years old. This is when the frequent emergency room visits would begin. I started running into complications with my diabetes that would require medical attention. I was hospitalized multiple times due to ketoacidosis. My blood sugars were always too high or too low. It was like I could never stay within my target range. 

 

The emergency room became my home away from home. At that time I had started learning what affected my diabetes more and what didn’t. The more active I was the more my sugar would drop. My blood sugars would rise not only from carbohydrate intake, but also from things like stress, emotions, social pressures and even the slightest cold. If you factor in things like incorrect carb counts, insulin sensitivity, and a preteen who thought she knew everything it was inevitable. My a1c levels were through the roof and only getting worse.

 

 I got my first insulin pump in the 4th grade. The pump was able to administer insulin to me all throughout the day without the need to take shots. The pump would also help prevent any mathematical errors because I was able to type in my blood sugar and my carb intake. It quickly became my lifeline. My blood sugars got easier to manage. My mother was more at ease because I was fully able to treat myself for my high and low blood sugars. There were only a select few people who were allowed to touch my pump and administer insulin to keep from errors being made.This didn’t keep me out of the hospital completely, but it made the emergency room visits a lot less frequent .

 

The older I got the harder school became. I was bullied frequently. It started off as kids just being kids and not understanding the full concept of what diabetes was. Some treated me like I was contagious, others would tell me it was my fault for eating too much sugar.  The older I got the more the bullying continued. Junior high and high school were difficult to navigate especially when it wasn’t just the students making me an outcast, but a few of the teachers also. I was sent out of class on multiple occasions due to the beeping of my insulin pump being too disruptive. I was reprimanded for missing school due to my illness even though I had good grades. 

 

My teen years were filled with me neglecting my diabetes in a way. It was almost like if I ignored it long enough maybe it would go away. This concept never seemed to workout like I thought it would. Although having an insulin pump helped slightly lower my a1c I also had to be willing to put the work in to get it where it needed to be done. I had gone down the path of self destruction for a little bit at that point in time. I didn’t care anymore. My blood sugars were ridiculously high all the time. My a1c was reaching a 12. I spent many nights upset and wondering why this had happened to me. I later learned the reason why. 

 

  It wasn’t until tragedy struck and a close friend from camp had passed away from diabetes complications that I started to get back on track. I realized that I had more work to do. There were children who were just like me who needed guidance. There are children who didn’t have the resources I had. Kids who didn’t get to go to camp and learn to cope. Kids who don’t have access to the supplies needed to stay alive. 

 

My mother was my biggest advocate whether that meant she was fighting the school board or educating others on teaching their children what diabetes is. I had an amazing family friend who I owe my life to for sending me to camp every year until I aged out. I had friends from camp who I could call and talk to at any time about our struggles. I had a great team of doctors and nurses who were always fighting for me. 

 

In my teen years I volunteered at the diabetes camp I had gone to as a child. I got to spend the week with kids who I was once just like. I got to help them come to terms with their diagnosis and hopefully be a light for them to look forward to. My training and experience at camp also led me to work with other people with special needs. I graduated high school, got married and started a family of my own. Although the pregnancy didn’t go without complications, I was lucky enough to be blessed with the most beautiful little girl who shines a light everywhere she goes. I learned so much from camp and my other experiences in life that camp led me to. This knowledge would then help me guide my own daughter through her journey with autism. 

 

Now I have an insulin pump and CGM system that I swear by. My a1c is lower than it ever has been before. I have an amazing family and a wonderful support system. It is now my turn to give back what was given to me and then some. I was given the resources that many other type one diabetics go without, and it saved my life. Now I hope to spread those resources and education with other children, and hope to guide them and their families through Kayla's Journey.