Final Feature story

Genevieve Shaffer

Magazine Writing Spring 2015

The Trials and Tribulations of a Type 1

To avoid death is an everyday goal of yours but when people look at you they have no idea that it is a battle. Type 1 diabetes is serious and life threatening. You go about your day as any ordinary person would. No one knows that you take extra steps to stay alive every second of your life. No one knows you tend to refer to yourself as a robot but you like to keep it that way. But the truth of the matter is that you are not “normal,” no one is, but your type 1 diabetes certainly sets you apart. Type 2 diabetes is prevalent in America, and every commercial, every ad seems to only discuss how to help them… you may find yourself asking, what about me?

Middle school is commonly known as some of the hardest years in a kids life. Everyone is going through hormone changes and everyone can be just plain old nasty. Not to mention some of the kids are just coming out of elementary school feeling terrified to enter a new world and others are getting ready to enter high school, where they will be faced with more responsibility then they have ever had. Middle school is an extremely stressful time. Now picture this, you missed most of your sixth grade year which helps you feel established, you were bullied all through out 7th grade switching in between classes hoping for some sort of solace in a new group of friends. Summers were always easy, friends on swim team were friends for life, at least some of them, and soon you were going to be in eighth grade where you would be the top dog. Except luck was not on your side in middle school and looking back that is clear.

People tend to be curious about how a disease develops or how someone might know they have a disease. Well one thing is certain, type 1 diabetes does not develop because someone ate to much sugar as a child. It’s pretty scary and much more complicated in its explanation. Type 1 diabetes does not develop from being overweight and not eating right but is genetic. That’s right type 1 diabetes is not “preventable.” People always want to know what the signs of type one diabetes are, and one things for sure you know they will never understand the true pain. Your blood sugar is so high that your body does whatever it can to cope. You become so thirsty that all you can do is try to consume as much water as possible, which usually amounts to what seems like gallons. Although you are drinking as much as possible you are becoming discouraged that you still feel so consumed with thirst that crying is anticipated and likely. Its almost painful how thirsty you are. With the immense amount of water you are consuming you will be making frequent trips to the rest room making it very difficult to go on long road trips or even to sit in class for long periods of time. It’s embarrassing to be running back and forth from the bathroom and when you are in middle school, one must ask permission to use the bathroom, and many teachers won’t allow all of those trips in one class period. Finally, your mood is terrible, everything makes you mad and crying comes easily. Your eye sight is becoming blurry especially objects in the distance. Something clearly is not right with you and a week has gone by and clearly something is wrong. Your parents are also noticing and when the blood test results come in the doctor calls, go to the hospital right away.

You gain a new appreciation for hospitals when it becomes your new home. The phone call requesting your presence at the hospital though completely necessary it was dinner time and have shown up to the hospital completely famished. You are also completely confused as to why you are at the hospital but can’t help but feel some excitement because you know the chances of you going to school the next day are extremely unlikely. Most hospital visits consist of long waits in the emergency room but once you arrive, your realize that they were anticipating your arrival and within minutes they have you in triage, testing your blood sugar, taking your blood pressure, pulse and temperature. You are quickly admitted to a room and an IV is started. You remember among all of the chaos that you have yet to eat dinner and all you want more than anything is a cesar salad. Making it clear that you are hungry they promise after one more IV bag is done you can have a salad. You still have no idea what is going on, what the diagnosis is or why you are there. Doctors are coming in and out and you find yourself exhausted, your parents don’t leave your side and they fall asleep in the chairs in the room. The next thing you know you are waking up, opening your eyes to a room with two beds, one in which is emptying the other you are occupying and there are 6 people in white coats staring at you.

Being poked and prodded becomes a common activity for the next week. But since you are only 12 years old and happen to be in the children’s hospital there are many perks. There happens to be a play room and that room includes a wii, a ton of cool crafts and board games. So you don’t really mind all of the attention you are getting from the doctors, especially when you have all day to play wii. Except it isn’t that easy because when you aren’t sleeping or tying to be a regular kid, you are practicing injecting yourself with needles. In order to practice as much as possible you are stabbing oranges with syringes filled with a saline solution. You are being fed so much information about your disease it feels impossible to take it all in and your parents are so exhausted, that they are constantly taking power naps so that they will be able to comprehend everything.

The last day you are at the hospital is pretty frightening. You are going to be venturing out into the world, without doctors to make sure that you don’t make a life or death mistake regarding insulin intake. On your last day technology is brought to your bed side. Now keep in mind you are in eighth grade, all of your fellow students have cell phones and can text each other whenever they want. Of course the idea of a cell phone has been brought to your attention while you examine your new blood sugar meters. So you take advantage of this life threatening situation and pull at the heartstrings of your parents. The argument, “wouldn’t you feel more comfortable if I had a phone for emergencies?” In the end you win this argument but that is against the point. You have a new reality and it hasn’t hit you yet that your whole life has completely changed. You head home and your mom has made it her mission to remove all of the bad food in the house and has been working to figure out the amount of carbohydrates in each meal, and thank goodness she did that because you really hadn’t figured out the severity of your disease. What you didn’t know was that your teachers and staff at school were going to be extremely difficult to work with and you had yet to experience the extreme blood sugars that would effect you mentally and physically.

The best way to describe the fluctuation of blood sugar in terms of the mental and physical effects on someone’s body, would be to compare it to someone who is drunk and exhausted or so hungry that you are essentially shoving food into you mouth mindlessly. When most people see you and your blood sugar is through the roof people think you are insane, your vision is completely off and your body feels like its drunk, like you have no control. Your dying of thirst and you are starving but you can’t eat because that will just make the situation much worse in terms of raising your blood sugar even higher.

A normal blood sugar for you is anywhere from 90-120 but you experience some ridiculously high blood sugars in the 400’s and 500’s. But then there is the complete opposite which you see as way worse than these high blood sugars. Highs can put you into ketoacidosis, which is sugar in the urine, which damages you kidneys, also has the potential to end in a coma. Although low blood sugars terrify you so much more. Your blood sugar can drop out of no where sometimes reaching has low as the 40’s. When that happens all you want is food and endless amounts. Your mom has to bring you the orange juice or glucose tablets to raise your blood sugar as quickly as possible because if you try to get up to go and retrieve the glucose yourself the exertion on your body may lower your sugar even more. When you are alone at college sometimes you feel as though you need to call someone to sit with you while your blood sugar levels come up because you just want to fall asleep, but you know that if you were to do that there is always a chance that you won’t be waking back up.

Having diabetes can be extremely frustrating in terms of living a healthy lifestyle. One would think that being a diabetic means that you eat healthy and not in large amounts to keep your blood sugar stable but it is much more complicated than that. Imagine you are at the gym you are feeling really great, running consistently for 40 minutes on rather difficult intervals, followed by Ab Attack, a class that is targeted towards rather difficult ab workouts, and suddenly, once you have completed your workout, you feel like you are completely drunk. You are dizzy, acting goofy and starving. Immediately you know something isn’t right. It’s like something has completely taken over you. You walk up to the café and start to order everything. Your order a bagel, two scones, two granola bars and chocolate chip cookies as well as a bag of chips. Under 10 minutes, you have eaten it all. So now you are filled with disgust. You just consumed all of, if not more, of the calories that you had just burned. Which leads to the body image issues that have emerged due to your condition.

Growing up you had always been extremely thin and then as you have gotten older and lived with type 1 diabetes for longer you body type has shifted. Because you find yourself eating more food to have a stable blood sugar you find yourself working out more excessively and becoming obsessed with losing the weight you have gained over the years. On top of that you have gained “scar tissue.” So many people don’t understand scar tissue, many people think scar as in what you get when you scrap your knee, well that’s not what it is. When you have scar tissue from insulin injections it builds up and appears as fat, making your stomach stick out a little bit more and it also affects insulin absorption makes taking insulin shots more difficult and can effect the way you view your health and your body image.

When you are a more seasoned diabetic you have the opportunity to use an insulin pump. Although before you can even consider using an insulin pump, your doctors want you to be completely familiar with calculation how many carbs you have taken divided by the ratio in which you use to determine the amount of insulin you need as well as how much insulin you need to correct the current blood sugar you are at, if it needs to be lowered. So for about a year you are injecting insulin every time you eat or have a high blood sugar. Finally you have done the injections long enough that you have mastered calculating the amount of insulin you need so you can finally receive the pump and it gives your body a chance to lose the built up scar tissue.

The pump seems to help you live a more carefree lifestyle and yes you are no longer injecting large amounts of insulin multiple times a day. But every three days you are expected to fill a new pump and inject a catheter into your body that will deliver insulin for the next 3 days. There is also always a chance that you may have to change your insulin pump earlier. Your pump tubing can get caught on doorknobs and the catheter can be pulled right from your body. Which seems to be a common instance between you and doorknobs. But accidents regarding insulin pumps are common..

When you were a freshman in college you had to be admitted into the intensive care unit because your insulin pump didn’t get inserted correctly and you didn’t know. Accidents like this happen all of the time and it is extremely frightening. There is a continuous glucose monitor that can be used in conjunction with the insulin pump that will alarm the user when their blood sugar is reaching unsafe numbers. But this is yet another item to attach to your body which can be discouraging and an annoyance, especially when you are spending your summers in a bathing suit but might be embarrassed by the technology hanging from your body. When you say you feel like a robot, you are being serious, yes technology has improved and that’s wonderful but you always wish you could be “normal.” Yes there have been plenty of advances in terms of technology. The insulin pump used to be a giant backpack and now it is small enough to fit in your pants pocket just as if it were a cell phone. There have been rumors of technology such as contact lenses that change color when blood sugar increases. How cool would that be your eyes could change colors, now that would freak people out. What we need now is awareness.

The most important idea is that you, though different, can live a life just like everyone else. You just have to remember that you were given this battle for a reason and that everyday you survive with type 1 diabetes the stronger you become. The emotional strength you have gained from this will help you with future endeavors. To raise awareness for type 1 is important since type 2 is the most prevalent in terms of it being well known. JDRF, the juvenile diabetes foundation, sponsors many walks for diabetes, has a website for donations and is constantly updating their website with the latest information on diabetes and the technological advancements. Everyone needs hope that one day there will be a cure but for now each person that has type 1 diabetes has a story and by sharing your story the more aware and understanding people become. To find a cure is to make sure that people with type 1 live long fulfilled lives where there is no fear of death.

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