It Varies.

I don't love being defined by numbers. As compliant or noncompliant. But, this is what you will experience during a typical endocrinologist visit for Diabetes. I don't think people mean to, that's just the way it goes. Diabetes is an illness that a lot of people view as black or white when you have it. When you're a good diabetic: your A1C is good. When you're bad: You ate too much sugar and you just didn't care enough to take care of yourself. I mean, how hard can controlling your levels be? Just don't eat sugar, right?  (This is a common misconception).
I arrived at my endo appointment at 9:50 on Friday, dropped my car off at the valet, and stared up at Emory's towering building and up into the bright morning sky before walking in. I couldn't remember what floor in this massive building that my doctor was on, but I hopped on an elevator and got out with a group of people at floor 15. Turns out I was lucky, as I saw the sign for the doctor's office and walked into the quiet waiting area filled with people. I waited about 15 minutes before my name was called. The medical assistant took my weight, then took my blood pressure, and proceeded to ask me questions. "How much medication do you take daily?" I told her approximately how many units of Humalog I took daily. I always had to guess, since I count carbs, and what I eat day by day varies. I gave my best guess. "And are you more compliant with your medications than last time?" I looked at her. It's true, when I first came in three months back, I hadn't been very compliant. I had promised to work on that. I had - I was injecting into my abdomen more, and my insulin absorption was better. I was keeping track of my blood sugar better. I wasn't perfect though. I was still working on it. Then there was the fact that I was running out of short acting insulin, but it was expensive with the copay... insulin was a commodity and I didn't want to accidentally overgive any of it.
"Yes." I answered.
"And what level do you usually wake up at?" She asked.
"I don't know. It varies. Today I woke up low."
"Well when is it normally high?"
"I don't know... it varies. It just depends on what I eat."
"And are you compliant with a low carb diet?"
"Yes."
"Your A1C was a little higher than the doctor wanted it last time, so we will take it again today."

"Okay."
The nurse was nice about not seeming judgemental, but I sighed inwardly nonetheless. I hate this back and forth, the "it varies" blood sugar levels. It's hard for me to explain why I was so noncompliant the past half year. There were a lot of factors that caused that. But, despite that. I was here now. I was not getting any awards for "best diabetic of the year." I would continue to try harder over the next three months. But it doesn't always matter. When you come in with not the best numbers, that's what you are: noncompliant. You did something wrong to get there. Didn't try hard enough, didn't eat quite right, didn't give enough medication, so on. It's something you did. I suppose that's fair. I didn't try hard enough. I let myself slip too much.

But some days that's heavy - you never wanted this disease, you grew up expecting a fully functioning pancreas. Diabetes makes your life hard, and people don't understand it. People make fun of it sometimes. People don't see how tough it can be. Life goes on; it's still hard. Day in, day out, you're tracking numbers, giving insulin. You slip, and suddenly dozens of little slip ups turn into 3 months and you're sitting there answering questions about how you don't know exactly how much insulin you give each meal or when most of your highs happen; they just do. Burnout happens. I think it's inevitable. But you're stuck in your body nonetheless, and this is the body I'm stuck in. It doesn't matter whether or not I get burned out. The fluctuating sugar levels hurt me more than any judgement from the healthcare practitioners that I'm a patient to. I know they care, I'm just frustrated with having this illness sometimes, but I'm the one that suffers if I don't give it my best effort. I'm young though, I can get myself back to the good A1C I used to have, I can be more disciplined. It's a process, but I can do it, and I do it for me.
I met with the diabetes educator that same day after my appointment. I hadn't been to a diabetes educator since I was first diagnosed. I remember those spring days clearly, years ago. My endo, Marie, who also had diabetes, inspiring me to power through it. She was beautiful and successful and she inspired me to do anything I wanted. She even belly danced. She had told me she was having her first baby and going to be a stay at home mom for a while. I missed her at all my subsequent visits when I still went to my doctor's visits in Florida. I remember attending seminars on counting carbs for apples because the carbs in different apples and apple sizes varied so greatly. I even remember the shade of eyeshadow I wore that day. That whole spring was new and scary as I accustomed to life with a new disease, learning to see the world through new lenses.
 Now, 6 years later, I hadn't had insurance for a long time, and my knowledge of diabetes technology had honestly sort of frozen since the time I was first diagnosed 6 years ago. Back then, continuous glucose monitors weren't covered by insurance because they were new technology. Insulin pumps were not tubeless. There was new insulin I hadn't heard of, like Toujeo. The diabetes educator showed me a tubeless pump called the omnipod and for the first time ever,  I actually thought I'd consider getting on once I got good insurance in August with whatever job I'd be working. I liked the idea of a pod I could refill with insulin every three days. I liked the lack of tubing. No shots every 3 days! I was game. I told her I wanted to get a CGM too - I'd always wanted that little machine to constantly monitor my BG levels. I left a little hopeful that I could have access to this new technology and make diabetes care easier. She gave me a demo kit that I could wear to just see what it would be like to have the insulin pump on. I plan to try it this week and write about it.

That doesn't mean I don't want to wake up and have this illness be gone one day though. As I was standing out in the waiting room paying my copay at the end of my visit, I watched people outside the doors walk by and get into the elevators. I went downstairs, and watched people around me get into cars. I grabbed my ticket from valet and walked outside to wait for my car to be pulled up. All of the people around me had their own unique problems. They were seeing doctors for one reason or another. Maybe it wasn't diabetes. Maybe they had never known what it was like to give shots all day, to count carbs like numbers in your bank account. To have dreams about eating without giving a shot. To not get blood drawn and pinpricks on a regular basis. They have their own burdens to bear.

Diabetes, whether I like it or not, just so happens to be mine.