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.





Tuesday, September 10, 2013

Who is passing out cures? Are they free?

Here we go again...

My past two entries that I have posted, along with their overwhelming response, has triggered a very strong desire to stop my insulin. 

With those posts, I wanted to raise awareness, and let other type 1 diabetics, who are struggling with the same issue, know that they are not alone.

I sort of feel as though I'm in the spotlight, and I have that unsettling, "all eyes on me" sense of being. 

I enjoy the center of attention, don't get me wrong. I love laughing at myself and making others laugh at my expense (it's sort of my thing), but I have recently just felt so unworthy of it all—the praise, the attention. Am I being judged? Not my character, but my body? Do I deserve to be referred to as brave, and courageous?

The weather here has been slightly cooling off; a season of the year that all of us Ohioans call, "football weather." I couldn't wait to put on my jeans when the high temperature hit 64 degrees on September 2. 

I dug through my neatly-folded and stacked pile of jeans on the top shelf of my closet. I chose my favorite pair; a flare-style, dark wash pair from Express. I had purchased them on sale, the day after Christmas in 2011. They were so cheap. Anyone who knows Express, knows that their clothing isn't exactly the most affordable. This $100 pair of jeans was mine for a mere $40. They fit so wonderfully on my short stature—they even made me look like I had more of a backside! I cut out the tag that stated the size—I have this thing where I don't like having a number define the size of my ass—so, I couldn't be honest about the true size of them. All I know, is that when I went to put them on, they were uncomfortably snug. To the point where I was trying to stretch them—you know, the embarrassing act you engage in, mostly in dressing rooms. You duck-walk, jump, and hold each side of the flaps apart, in order to somehow make the jeans magically bigger. 

No such luck. 

These babies were TIGHT. I was panicking. How much weight had I really gained, since I quit smoking? I thought it was only eight pounds, but it felt more like sixteen. 

The next morning, after a relaxing Labor Day, I arrived at work to use the scale. Fortunately, it was before the rest of the department got to work, so I made sure to remove EVERYTHING. It's 6:08 AM, and I am standing in my bra and underwear in the middle of my clinic area, on the same scale I use to weigh my patients. 

This scale is a son of a bitch.

It's September 3rd, at 6:08 AM, I'm half naked at work weighing myself, and the number that greats me on the scale was so unkind. I am up ten pounds. Ten.

So, after I dressed myself for the second time that morning, I went back to my office to sit down. I needed to try and slow down the thoughts that were frantically running through my brain. 





At this point, my heart starts racing, and I become sweaty. I look down at my Dexcom, which had just begun to greet me with loud beeping noises, indicating that my blood sugar was dropping. 54 mg/dL. I panicked myself into a hypo. All over the number I had seen on the digital scale.

The work day carried on as usual, nothing too crazy. Flu season had begun the week before, so I was busy giving each of my patients an immunization. 

All I could think about all day was stopping my insulin to lose weight. My blood sugars were perfect; glistening 80s, 90s, and 100 mg/dL readings on my Dexcom. Why would I want to ruin that? 

In an effort to keep my mind off of harming myself, I went for a walk on my lunch break. Do you remember me telling you about the rheumatologist I had worked with, back in 2010-2011? Well, I ran into her on my walk. 

"Meghann, hi! How have you been?" I responded appropriately, despite the lump in my throat (that happens when you really struggle to keep yourself from bursting into tears). I could feel her eyes look me over. Twice look me over. 

"Any special guy for you, yet? Are you continuing to watch your diet and exercise? How is your weight doing?"

There it was. The unspoken. She was inadvertently trying to tell me that I had picked up weight. 

I get it; the woman loves me, she cares about me, but COME. ON.

I sweetly responded to her that yes, diet and exercise are in check, and my blood sugars are immaculate. She wished me a good day, and headed in the opposite direction.

I immediately walked to my car in the parking lot and stewed. Was I overreacting? 

When I got home that evening, I had forgotten that I had brought home my entire diagnosis summary and hospital discharge notes from 1990. It was a 3" binder that was entitled, "Diabetes Notes," from the Medical College of Ohio. I had found it at my parents house over the weekend, cleaning out my old room of junk (I'm a closet pack rat—Don't tell anyone).

I sat on my couch and began to flip through it. My actual discharge papers! On a fading, yellow sheet of paper.

Day of admittance: 12/06/90
Day of discharge: 12/11/90

Lots of sheets with "safe" foods. "Free" foods. How to treat a low blood sugar. How to treat a high blood sugar. Personal notes written to my parents by my pediatric endocrinologist; he even provided them with his home telephone number!

In one side pocket, I found letters from other parents of type 1 diabetic children that my parents had befriended in their diabetic education classes. 

A woman named Mary Ann had shared a diabetic recipe for carrot cake. A gentleman named John provided helpful insight on how to educate my teachers about my diabetes. And of course, my infamous "Dear Mom" letter on a piece of faded, orange construction paper.

Behind those letters, were letters from Dr. Horner, my pediatric endocrinologist from 1990-2007. They were all test result letters dated 2001-2005. 

I read through them, paying special attention to the personal instructions he would pen to me, always in the right lower corner of the letter.

February 10, 2003, Dr. Horner wrote, “We need to work on improving your blood glucose readings and HgbA1c, Meghann. Call if you need help. Doc H”
At this time, my Hemoglobin a1c was 12.2%. Looking at that number on this deteriorating sheet of paper made my stomach turn. I read through some more.

“Meghann, you really need to get serious, get those BG readings under control, and lower that A1c.” My Hemoglobin a1c on May 13, 2003 was 11.9%.

“Meghann, you really need to work on improving your diabetes control. Doc H”
My Hemoglobin a1c on September 8, 2003 was 10.0%.

They were so disappointing. Why did I do this to myself? When I read his dedication to me from October 28, 2005, I completely lost it; even the lump in my throat couldn't prevent the tears that started and didn't stop. 

“Meghann—you really need to work at improving your diabetes to avoid the chronic complications of the disease. You need to take control and protect your kidneys. Doc H”

At this point, I'm sitting on my couch, and having second thoughts about renewing my lease with diabulimia. No way; I can't go through this again. I need my kidneys. I want to be around for my family, and my unborn niece. 

I had my six week follow up with Dr. Christofides today; the appointment I had wanted to cancel last week, during my personal crises. 

We chatted about my blood sugar readings, that Josie (her amazing front office assistant) had downloaded from my Dexcom. We chatted about my basal rates, my correction factor, that one time I bolused 40 grams of carbohydrate for half a head of cauliflower (I know, right?), along with my dose of medications. 

I don't even know how the conversation started, but I was crying. I was telling her about my thoughts. How I wanted to lose the weight I had gained. How I wanted to fit in my jeans, and that the thought of buying a bigger pair disgusted me most of all.

Dr. Christofides, in true form, looked at me with her big brown eyes, and said: "Meghann, fuck all those people. I don't care about your weight. You are beautiful inside and out. We will fix your thyroid levels. Once those are straightened out, then I will worry about your weight. You have my permission to tell those people to fuck off." 

People, hear me: I smiled through the tears. I love this doctor. I mentally send Dr. Archer a thousand kisses everyday for recommending her to me. 

We made some changes to my pump, I made my follow up for ~7 weeks, and then I made my drive back to Reynoldsburg. 

I am happy, once again. I am in a good state of mind. I sang along to the radio. I waved cars in front of me (which is hard to believe, but I rarely allow that). 

I came home, cried a little more, and decided upon typing up this blog post. Honestly, I was kind of disappointed that my title wasn't very catchy, or witty, but I have plenty of upcoming opportunities to make you all giggle.

I have juvenile diabetes. 
I am the face of a chronic illness.
I have an invisible illness.


I am healthy. 
I am alive.
I am free of complications.

I don't expect to see those negative thoughts anytime soon, and I didn't appreciate their brief appearance cramping my style, but... I'm back.

Here are some photos of the letters from Dr. Horner:

And here is the letter I wrote to my mom, in a Crayola magic marker:

To celebrate my strength, and deciding to not give into temptation, I'm eating a chocolate chip cookie—gluten free, of course. And maybe sharing it with Phoebe.