Daily Life and Language

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I went pro when I was 11. Drawing up shots is in my nature. Two a day, rain or shine, in a moving car, on a plane, in public, and in front of friends who are scared of needles. I can’t let their fear stop me.

Needles are the most harmless part of diabetes. Emotions, thoughts, and feelings are the scariest part.
It’s not how we feel about ourselves but how diabetes is perceived and then reflected back on to us that can hurt.
1. Don’t feel bad for a person with T1D. Tell them they are amazing.
2. Don’t say “I’m scared of needles”, to a person with T1D. Tell them they are badass and fearless.
3. If you have T1D and suddenly find yourself having a bad day, STOP, and see yourself; You are a person first. Diabetes is a partnership. Remember who you are and what you love. You are not your A1c, or a test strip, or a pump. You are YOU. You are strong. Believe that you are are unbreakable and so you are.

Language

I’m definitely a sensitive person but extra sensitive when it comes to the way diabetes is talked about. Several times in the past I have attended a lecture about diabetes and the presenter speaks as if no one living with diabetes is in their audience. Unfortunately, I’ve heard type 1 diabetes described in so many dreadful ways and it breaks my heart.

This invites negative self-talk and defeat coming from within and we don’t deserve that. It is never appropriate for a healthcare practitioner to give the impression that diabetes is too hard, sad, or unfortunate. We must be the strong who stand up and remind ourselves that perception and positive self talk is everything.

Pudding

I am an adult and I hate pudding. Nothing reminds me more of what it felt like to be a kid in a hospital bed than pudding. This plastic four-ounce cup filled to the top with mucous-textured slop has a three-week shelf life and little nutritional benefit. It can be eaten in under 60 seconds since it oozes down the esophagus like a slug. I’d rather get into a dandelion eating contest with a fat wild rabbit than to ever see one of those puss-colored vanilla cups ever again. 

I do not have an exceptional memory and would describe my temporal lobe as highly selective. However, I do recall being a weak and sickly 11-year-old kid in a hospital bed with an intravenous drip inserted into the protruding vein of my small malnourished hand. It ached every time blood was drawn from the port, which was every hour on the hour for several days. I remember thinking that blood smells warm. 

Hospital food was delivered to me three times a day plus snacks, and it was as if I had never had a bite to eat in my life. Ravenous was my middle name. Suddenly, I was bouncing back from near death as a growing kid that previously lacked the ability to absorb nutrients for an unknown number of months. Damn right I knocked a chocolate pudding cup back with six heaping dips of a vanilla wafer as often as I could. It was worth the injection I had to take for it. After three days of pudding-loading, I walked out of the hospital with my parents and went home to start a new life with type 1 diabetes.   

Back to my hatred for pudding. 

What is it about that stupid little plastic cup that makes me despise it so? Perhaps it’s a symbol of experiences that shaped my moral fiber to this day. A thousand memories and feelings that sting at every tiny puncture site on my fingers, belly, and thighs. When you realize that your body no longer makes something it can’t live without, you unwillingly change to survive. 

Well, that’s awfully dramatic for pudding but it’s probably true.  

Every pudding cup is like the health advice I never followed as a teen: processed, unfulfilling, and forgettable. I devoted as much time trying to develop a relationship with a pudding cup, as I spent trusting in my healthcare team. Pudding was on my snack list as having the right number of carbohydrate grams that worked within my meal plan that left me overfed to meet my insulin requirements, but somehow I felt low blood sugar frequently. I wanted to be athletic but my constant leg cramps due to poor blood sugar control and insufficient hydration hindered my ability. Everything was completely out of balance and it’s just the way it was. I felt like a square trying to fit inside of a circle. I couldn’t will my body to work better and I didn’t know if it was in my power to change anything. Non-sense and struggle was my norm and it was completely unfair.     

Enter, anger.  

As my frustrations piled up like used test strips, I sat on an exam table of resistance and resentment that grew with every clinic appointment. The more I heard that I needed to do better at diabetes the more I recoiled from the people trying to help. From my perspective, they didn’t know why I struggled and they weren’t trying to know. Most of all, they didn’t have to take insulin shots for a living. I held in what I wanted to say to the scrutinizer but inside I was screaming this at the top of my lungs: Maybe I’ll take direction when you start to feel diabetes from the inside and poke a hole in your finger six times a day. Attempt to teach me about nutrition when pudding is on your meal plan!

If the experts aren’t eating it why the hell am I? 

I took my frustrations out on everyone, especially myself. I hated my body and I couldn’t make sense of what was going wrong so I internalized my feelings. I was a chubby little kid but hit a growth spurt about a year before being diagnosed and transferred a few inches in width to inches in length. The gain in height was a fortunate change until symptoms of diabetes and ketoacidosis caused my body to lose more fat than what would be considered healthy.

It’s important to explain that I didn’t begin to hate my body because I developed diabetes but because it didn’t make sense that I was gaining weight when I exercised daily. Why was I getting fat when the clinic told me to eat this much? Surely, they would be focused on keeping my weight under control. Right? Mom weighed every bit of food and followed my meal plan set by the dietitian every day. It also felt as though I was gaining weight weekly and this persisted through high school. Do I really have to describe what that does to a girl who is athletic, and should feel confident, but is anything but sure of herself?

I was spiraling into a dark place that I kept to myself up until I wrote about it on this page. My anger typically reared its ugly head when I couldn’t control an outcome. Like when I struck out during softball games I would occasionally throw a bat. I got in trouble for it but just shrugged it off. I drove too fast, screamed into pillows, and didn’t put up with anyone I didn’t like. I was such a hot head but I didn’t pick fights or lash out. Thank goodness social media wasn’t a thing when I was in high school! I wanted to be around people who made me laugh and that’s why it was more likely that I would be hanging out with my parents on a Friday night instead of going to the football game. I’ve always had a low threshold for small-talk, gossip, and talking about boys. In my humble opinion, my concerns were a little more weighted and important. My daily routine included the following questions: am I low? Am I going high? Did I bring food? Do I have a place to test my blood sugar where no one will see me? If not, I wouldn’t do it. Boys were not a priority, which really limited my conversations with girlfriends.  

 I was the kind of kid that absorbed conversations even if it appeared that I was not listening. My intuition and self-awareness were brewing like a strong pot of coffee. I was sharpening an arrow of sound judgment that kept me relatively out of trouble because of my health responsibilities. Feeling out of control or allowing others to influence me was not likely to happen as I grew up. My inner compass always pointed me to careful decision making.

It wasn’t long before distrust set in and I was critical about who I took advice from. My hot temperament raced with burning questions. I was fed up with wondering why something was happening dozens of times per day until it dawned on me that I had to find my own solutions. It was time to use the arrow I had been sharping and the good judgment I had built and point my anger and resentment towards acquiring knowledge.

At the beginning of my quest to seek information, I knew that I had to set my priorities on healthier habits with food and exercise. Running looked like something healthy people do. Let’s try that.  

One thing led to another and I was back to exercising daily like I was a kid again. I learned how to cook a few healthy meals which helped me make better food choices everywhere I went, and I was finally understanding how food and exercising affected my blood sugar. A better understanding of how my body functioned was the key to a fulfilling future for myself. All I had to do was decide to become a questioner and take ownership.

Some might call this controlling your destiny. I call it a simple reset on my second chance at life. Morbidly speaking, my body was not designed to make it through the age of 11 without scientific intervention. Some kids aren’t so lucky. All I had to do was take the opportunity in front of me to simply live better, take ownership of my health, and become the expert of my own body. The perception that diabetes is a death sentence never entered my mind. What drove me to get better at diabetes was to figure out why I felt like I had to do it alone. 

In the walk of life, one disheartening moment can shatter our very existence or become a monumental catalyst for change. Experiences shape who we are but our perspective is not set in stone. If I had not struggled in anger perhaps I could have chiseled my square into a circle and somehow managed to blend in.

Would I have turned out any better without having diabetes? We’ll never know. What I do know for certain, is that I will never consume another pudding cup for the rest of my life.