Monday, September 23, 2013

My Story

I have had type 1 diabetes, or "juvenile" onset diabetes, since 1990.


I was four and a half years old when I was diagnosed.


Living with type 1 diabetes is no easy feat; the decisions I make are primarily based around my disease. I am consistently testing my limits, wondering if the choices I make will affect me and my disease in a positive or negative way.


People try to understand – people say that they can “totally relate,” when the reality is: You Think You Know, But You Have No Idea.


A day in the lifeI am a walking pin cushion. In the days before my Medtronic insulin pump and my Dexcom CGM, I had to test my blood sugar up to eight times per day. Can you imagine drawing blood from yourself before and after each meal, or any time you didn’t feel good? How about injecting a chemically engineered liquid that saves you from winding up six feet under, more than 5 times per day? The thought makes many nauseous, but it’s unfortunately become routine for me.

When my parents and my endocrinologist gave me the reins to take care of my disease on my own, I abused it. More on my story with diabulimia can be found in earlier posts.


I was denied the privilege of having my driver’s license at 16 – my parents wouldn’t even let me get my permit until I started taking better care of myself to bring my hemoglobin A1c down.


I finally obtained my driver’s license at 17 and a half years old – well into my junior year of high school, when most of my friends had already been driving since they turned 16.


I was also unable to attend college after graduating high school, which at the time, was hard to understand from my parents point of view. I wasn’t healthy, I was having too many high blood sugars, and having intermittent seizures from low blood sugars – they couldn’t trust me to take care of myself, and they were scared. I understand this now, but at the time, I was angry. It was no one’s fault but my own. So, while my friends were getting ready to pack up for college and have the experience of their lives, I was working two jobs and applying at technical/trade schools for medical assisting and phlebotomy.


Being 27 years old now, and looking back at the 18 year old me, is such an out-of-body experience. Who was I back then?

I was a hypocrite—I wanted to be a nurse, to care for others, the way I have been cared for my entire life, but how could I even try to take care of my patients, when I didn’t even take care of myself?


In 2007, I started using an insulin pump, but the process to get one wasn’t easy.  I had to keep a log for 60-80 days. I had to write out my blood sugars (up to eight times per day), the food that I ate, the amount of insulin I used, and the correction that was needed. My doctor even had me wear a CGM, or “continuous glucose monitor” for seven days. The needle/sensor that they injected into my belly was a good 1” long, and I won’t lie, it hurt! The CGM (circa 2006-2007) looked like a cardiac Holter monitor, and it was concealed in a black bag with a strap that I had to wear on my shoulder, like a purse. I had to put a Ziplock bag over it when I showered. It was exhausting, but for the first time, I wanted the change. I worked my butt off, and my hemoglobin A1c that was consistently between 10% and 12%, dropped to 7%, one month before I received my insulin pump. I achieved that on my own, and I was so proud of myself.


At that point, I was 21 years old, and had a great job with great insurance, but I was still worried about the cost of an insulin pump.


After my physician submitted a letter of medical necessity to my insurance company, all I had to do was wait.


I finally received a phone call from a “Juan” at Medtronic. The call came while I was getting ready to sit down to dinner. Once Juan delivered the news that, yes, I was approved to receive an insulin pump, and yes, it was covered 100% by my insurance company, I sank to my kitchen floor and started crying. This was going to change my life. This would possibly extend my life. No more injections? Like, ever? I couldn’t believe it.


Pump training was miserable. All great changes are preceded by chaos, am I right? My dad was laid off from work at the time (winter of 2007), so he drove us to Toledo and attended the 3 hour long class with me. It’s funny, to me, because those are some great memories of just my dad and I.


We learned how to draw up insulin into the reservoir, how to inject the infusion set, how to remove the infusion set, and how to disconnect from your pump. Confusing, right? Are you still with me?


For a week, I had to infuse saline with my pump, instead of insulin, just until I got the hang of it. I was still using injections, but I would have to remember to enter my blood sugar and the amount of carbohydrates (measured in grams) I was eating into the insulin pump, so it could calculate the amount of insulin (or saline) I would need to cover my meal and my blood sugar, if a correction bolus was warranted.


The most hilarious part of training and learning to use my insulin pump on my own, were the mini “freak outs” I had. I was frustrated with learning. I couldn’t get it perfect each time I tried, and that made me crazy (because I’m a perfectionist)! I remember running downstairs before I got in the shower, telling my dad that I couldn’t disconnect my infusion set from my body—it’s going to be stuck there forever! I’m going to die! Oh my God! Help! It always makes me smile when I think about it, how overwhelming change can be. I am the world's biggest drama queen, because I made my dad attempt to disconnect my pump with a pair of PLIERS! So hilarious!


I moved to Columbus in 2009, which was nerve-racking. How would I be able to care for my diabetes so far away from home and the familiar? At the time, the insurance I had through the first hospital I worked at had ridiculously expensive co-pays for my insulin and my pump supplies; Three hundred dollars plus! I went back to using injections temporarily, because it was what I could afford.


The first endocrinologist I established care with through Mount Carmel was awful. He never kept eye contact with me. He didn’t explain his plan of care for me. He billed my insurance company as Type 2 Diabetes. I was angry. He never listened to me. I felt like he didn’t want to help. I was dealing with my own personal hell, and this guy wasn’t making my life any easier.


I would intermittently just skip doses of my insulin to save money, and because I was still struggling with diabulimia.


At the time, I was working full-time at a cardiology office, where 14 physicians dictated my whole shift. I was given dirty looks when I would take a break to test my blood sugar, or run to the break room to drink juice for a low blood sugar. To the doctors I worked for—who only knew the cardiovascular side of medicine—stopping to check my blood sugar, or treating a low blood sugar meant that I was "brittle," or "uncontrolled." It meant weakness.


There was one exceptional cardiologist that I worked for, who advised me to stop seeing the endocrinologist I had just established care with, and to make an appointment with one he recommended. “You’ll love her!” he exclaimed. His excitement for this endocrinologist gave me newfound hope.


Since establishing care with my new endocrinologist, I feel confident working 50+ hours a week and living alone.


I applied for a CGM (continuous glucose monitor) by a company called Dexcom in February of 2012A sensor is inserted under my skin (subcutaneously), and stays there for approximately seven to fourteen days. The receiver, which looks like an iPod, transmits the data and allows me to track my blood sugars via graphing. 

I met with my area Dexcom representative at Panera one evening after work, and she showed me how to use it, and how to insert the sensor under my skin, which was another frustrating learning experience. I didn't want to say goodbye to her—I needed her! She took me in the women's restroom and inserted my first sensor for me. The whole time, I'm just standing there, completely overwhelmed, but smiling and verbalizing that I understood what she had just shown me and taught me. Oops.

I wish someone could have seen my mini “freak out” (the sequel) when I had to change the sensor for the first time by myself. I was dancing around, fake crying, and being so over dramatic (as usual) about it! I had Kerri, my Dexcom representative on speaker phone, coaching me through it. It took me about a half hour to insert a new sensor by myself, and now, months later, it takes me less than 10 seconds to insert one!


The Dexcom has been extremely crucial and beneficial to my disease. I love being able to know what my blood sugar is, at any given moment. I can confirm the blood sugar reading on my Dexcom by doing a finger stick glucose, and 90% of the time, they match.


Now that you know a little bit about my background, let me tell you about the “Diabetes Police” or the people who constantly criticize the way I care for myself and my diabetes.


The “Diabetes Police” are those individuals (even a group of people) who constantly feel the need to judge everything I eat. These people are sorely uneducated. They shake their finger at me when I have ice cream or pasta. They tell me I will eventually die from eating these things. Are you kidding me right now? You know what I want to say to them? “If you keep eating the way YOU eat, you’ll end up with Type 2 diabetes, and then we’ll actually have something in common!”


Just because I have diabetes, doesn’t mean I can’t eat something. I can eat anything I desire, anything I am craving, anything that a “normal” person eats, I just have to make sure that I take the correct dose of insulin to break down the nuclear content of the food, in order to convert it into energy, like someone with a working pancreas does.


If I don’t take enough insulin for something I eat, I’ll have a high blood sugar (hyperglycemia). When my blood sugar is high, I need take insulin to bring it back down. This is known as a correction bolus. I don’t feel good when my blood sugar is high. I feel grouchy, impatient and so thirsty. I feel feverish, like I have the flu. I need to drink lots of water to prevent the blood sugar from rising even higher, and from developing ketones in my urine. Ketones in my urine could be the beginning stages of DKA (diabetic ketoacidosis), which is potentially fatal to type 1 diabetics.


If I take too much insulin, or get too much exercise, I’ll have a low blood sugar (hypoglycemia). When my blood sugar is low, I need to eat 15 or more grams of carbohydrate (with a small dose of protein to stabilize the blood sugar), like peanut butter crackers, or Goldfish crackers. I also need to drink juice, or a regular soda—something with fast-acting sugars. I can eat candy, such as Smarties, or Nerds (my favorite!) to bring my blood sugar back up to an acceptable level. I can usually feel when I am low; you feel shaky, sweaty, and hungry. I also get very irritable and near-impossible to deal with. I usually explain to others that my low blood sugars feel like borderline intoxication. I have trouble thinking and processing information. After I eat a snack, I usually wait 15-20 minutes to recheck my blood sugar. If it’s still low, I have to eat more to bring it back up. The lower my blood sugar gets, I can become combative. My mom used to tell me I had "super human strength" when my blood sugar dropped to a level where I required assistance. Falls put me at risk with extreme lows. Low blood sugars can be just as dangerous as a high blood sugar; in the past, I have had seizures from going so low. This is considered a true diabetic emergency—I would need the assistance of an EMT to administer what is called a Glucagon (a manmade hormone injection) to raise my blood sugar quickly. I have not had a true emergency since 2001, and for that, I am grateful. The side effects of the Glucagon shot are not pleasant! Vomiting and feverish for hours!


Having type 1 diabetes has also subjected me to teasing and ridicule from people. Co-workers, friends, family members, and strangers offer me their two cents on a daily basis. I don’t mind answering questions and providing education where I can, but the teasing, especially since I am a 27 year old woman, is uncalled for.


I currently work in a medical office, and each day at lunch, there is a gang of women who are ready to pounce on me at a moment’s notice when I walk into the break room to make my lunch.


My lunch usually consists of a large salad—not because I have to eat it, but because I want to eat it; I enjoy salad. These women always roll their eyes at me and announce, “Oh, here she comes with her huge salad! How do you eat that? Ew! I’m so glad I don’t have diabetes so that I don’t have to eat that crap.” One day, I had finally had enough, so I provided detailed information and education on type 1 diabetes. I don’t think they listened to a damn word I said, because they were still asking stupid questions like, “Did you get diabetes because you had too much sugar as a kid?” and providing commentary, such as  “My cousin has diabetes and he is so overweight. Did you lose weight to become a type one?”

The only thing you can do in a situation like this is to find a different place to eat your lunch every day.

I once had a physician, whom I worked for, tell me that I would lose my feet from eating too much sugar. First of all, you’re a doctor—you should know the laws of diabetes have changed, and type ones can eat whatever they would like, to their heart’s desire, as long as a sufficient amount of insulin is provided. His nurse would also constantly badger me about every single thing I put in my mouth—even gum!

Strangers are a whole different playing field. I have people accuse me of wearing a pain pump, saying things such as, “Wow, you don’t look like you are in as much pain as I am in. My doctor won’t even prescribe Percocet.” I explain that it is an insulin pump to help infuse insulin for my type 1 diabetes. The woman then goes on to say that, “You must have it bad, then.” I tell her that I wasn’t aware a ‘bad’ kind existed.

My mom tells me stories all the time about when I was younger, and the terrible things people said to her about me. “Say goodbye to your old daughter,” one woman had said. “She’s gone. This is the new Meghann.” What sort of heartless person says that to a terrified young mother?


The only thing I can do is to just ignore the ignorance, continue to provide education at each opportunity, and smile through the tears.


As I have said, many times before—diabetes is hard.


I assume I was chosen by God to live with this disease, so that I can be a symbol. What kind of symbol, you ask? A symbol of strength, courage, and bravery. I want to use this opportunity to be a light in someone else’s darkness—a sign of hope.


To me—That’s worth fighting for.





1 comment:

  1. Thanks for posting this! You are awesome! Doesn't blow you away how ignorant the medical profession can be? I don't mind ill-informed comments from regular people but the so called medical professionals make me angry. I work in an office with 16 Othopedic Surgeons and some of them need to be told.