No Sugar for You

Before I can even remember I was told that I was not allowed sugar.

At the tender age of one year old I almost died from diabetic ketoacidosis. Which high blood sugar due to my pancreases not producing insulin. My body's immune system began to attack the insulin-producing beta cells in my pancreas. The beta cells become damaged and, over time, my pancreas stopped producing enough insulin to meet my body's needs. At least that is what they say medically.

My mother tells the story about how fruit flies would circle around my diapers from my body trying to get rid of the excess sugar that my cells could not process to get the energy they needed. I would lean against our chain link fence breathing heavy trying once again to rid my body of the extra sugar that it was consumed by.

The doctors told them when they first brought up my labored breathing that it was asthma. When my body began shutting down they rushed me to the local hospital. No one knew what was wrong with me. Running test after test finally a hematologist asked if my blood sugar had been tested. Bam, they found the reason. Yet had no idea how to treat me because back in 1984 I was the youngest case in that state to be diagnosed with Type 1 Diabetes.

We were lucky since home glucose monitors were available but man were they a pain back then. We were also lucky that a company called Eli Lilly developed the first genetically engineered insulin in 1982 known as “Humulin.” One eighth of a unit for eight ounces of food. Give it to me too early before I ate and I crashed hard. Too late and my blood sugar skyrocketed. Heaven forbid as a child that I refused to eat after the shot was given. Not eating meant death as did eating too much. The doctors told my parents that I probably would not make it to the age of five. Even at a young age I like to do my own thing and not listen.

When I started kindergarten they wanted to put me in the special education classes because they did not know how to handle a child that young with diabetes in the public school system. My parents fought them and I was allowed to attend a regular class. The teachers were instructed that if I started acting like I was drunk I needed to eat. The go to for those situations was sugar cubes and the pineapple juice in those little cans.

Getting older they knew that I could take care of myself at school. At least the school administration and teachers did. There was the time I had a low blood sugar moment “reaction”. And I was sent home having to cross a busy five lane street to get to my house. Then again it was only a block and a half away but what was the harm. Another time in fourth grade right before lunch my insulin hit fast and hard. I ended up wrapping a fellow student's coat around me like a cape and then passing out. I remember vaguely being carried by my teacher at the time to the nurses office. I didn’t wake up until after school was well past over. The office staff had forgotten that I was even there.

I felt so different and out of place. I mean how many kids can look at their lunch tray telling you how many carbohydrates it contains. During school parties and birthday treats for students being brought in I was not allowed to partake, being given an apple as a replacement for a cupcake. Then you had the times that I was told by friends or parents that the item was sugar-free so that I could partake not being left out. But it wasn’t and my sugar burst off the charts. That was just elementary school.

Junior high and high school were so much fun. I say that sarcastically. With the hormones trying to work their way through my body. Add on becoming insulin resistant. My blood sugar was over five hundred most days, normal is eighty to one-twenty. I have no idea how many times my body went into diabetic ketoacidosis. How I came to suffer from a rare complication of my disease called Mauriac syndrome, my liver was extremely enlarged due to glycogen deposits. I failed to grow and it delayed puberty. It was reversed by me getting an early model of a diabetic pump which is a line inserted into your body allowing you to give insulin at a quicker rate since it goes through all of the scar tissue built up from the continual injections putting it into the bloodstream instead of in the muscles to be absorbed.

I grew six inches in six weeks. Began to develop normal body parts. Went from a childrens size clothing option to now womens. I was a mess. Then came the hemorrhaging in my eyes. The blood vessels in them were trying to keep up with my rapid growth rate and would explode causing pools of blood to form in my eyes. I saw what looked like little black birds. After many laser surgeries on both eyes to cauterize the bleeding they had to go into my left eye in order to remove the tissue which is like working with wet toilet paper or so I was told.

In college my pump failed after I was given a new model type. I went to bed one night and a week and a half later I woke up in the hospital having done into diabetic ketoacidosis, causing my brain to swell and sending an infection into the lining of my heart. You know the small stuff that has you leaving the one place that you truly loved to be. I no longer use a pump and probably never will again, even though the technology has advanced.

Why am I telling you all of this?

The honest answer is I am sick of the misconceptions of this disease. I am sick of being told that I cannot have sugar. I can, I just have to take insulin for it. I am sick of the running joke that people use saying ‘Oh if you eat that much sugar you will get diabetes.’ Type 1 diabetes is an autoimmune disorder. Type 2 diabetes is when your pancreases does not produce enough insulin which could be from a number of reasons. And your cells are unable to absorb the insulin properly. I am sick of people thinking that you are safe from diabetes if you don’t gain weight. Come on people if it’s in your genes you can stay rail thin and still get it. That diabetes isn’t as serious a disease as cancer. Now please let me be clear that cancer is horrible and something that we should be able to cure by now. So is diabetes, it kills more people every year than Breast Cancer and AIDS combined. And aside from everything that I have gone through, I and many other diabetics run a higher risk of heart disease, stroke, blindness, kidney failure, and lower limb amputation.

Lack of understanding anything causes misconceptions and fear. Yes, the things that my disease has put me through can seem overwhelming, unbelievable, scary, as well as many other thoughts and emotions. The thing is after having this disease for such a long time, it has become a part of me yet it does not control me.

I met a mother the other day while at the park. My continuous glucose monitor signal that my receiver was out of range. She asked if I had the system that I do. She proceeded to point to her young son who was playing with my young daughter telling me that at a year old he was diagnosed with diabetes. We chatted for some time. I told her about the things that I had gone through. In letting her know my story she told me that it gave her hope for her son. That even though he might go through a shit storm of things because of the disease we share that if he was willing to fight he could win.

I often wonder what my life would be like had I not been graced with a disease that taught me how all we can do is fight and hope. Fight for what we want, what we need. And to hold onto hope when it seems that nothing else is left.