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.

It May Be Funny, But That Still Doesn't Necessarily Mean You Should Do It...

I would just like to throw out to the crowd a recent thing that happened to me and put out my thoughts on it. It may make me sound like an uptight Type A with no sense of humour; it may be justified; I don't know. It's just one of many opinions.

When I first got to Mercer, literally one of our first sessions during orientation involved the use of people first language. In short, this basically means that, out of respect, you shouldn't call your patient "your 3 pm shoulder", but rather, should refer to them as, "your patient with shoulder pain (or whatever condition) that has a 3 pm appointment." Taking it further, for example, you shouldn't say "the blind man", but rather, "the man who is vision impaired." It may seem like a subtle difference to some, but I do think it is an important difference. We as people should not be defined by our conditions, our weaknesses, what's wrong with us. People first language gives dignity and respect to your patients. It treats them like people - not diagnoses. And this is why I certainly support it, especially as someone with a chronic disease.

So imagine my disdain when I literally hear my professor last week correcting someone about a patient with (x) condition. "It's a patient with (condition),", not your (condition) patient," she corrected one of my classmates.
20 minutes later we are concluding class, and the topic of diabetes comes up. I give some diabetic blood glucose ranges to the class and our professor apparently remembers something she wants to show us. It's the last 10 minutes of class. She pulls up a video. It's the "diabetes rap", if you've never seen it. I actually hadn't, but I had certainly seen the memes of a white mustached man stating "Diabeetus" for the world to ridicule.

This video is funny for like.... the first 30 seconds. I'll give it that. I chuckled a little in class. But by the time we hit minute 3, I start to get really frustrated. Why is it that it's okay for a program that teaches people first language since literally day one to literally mock an illness that kills hundreds of thousands every year? It may not be that serious day to day for people like me. Some days can be totally normal. You'd look at me and never know I have a life threatening illness. But diabetes is life threatening. Diabetes changed my whole life. I've heard stories of people going to sleep and never waking up from lows. There's an American Idol contestant or winner (can't remember) that lived on the streets and couldn't outright afford her insulin for years. People spend more money on insulin than mortgages sometimes...Kids cry over this condition. Kids have eating disorders because of this condition. They are different than their friends because of this condition. Moms worry if their diabetic children will be ok during simple sleepovers because of this condition. I cried three weeks ago because the pharmacy tech essentially mocked the insulin prices I have to pay regardless of whether I want to. I deliberately don't give myself shots in my arm because I'll bruise and bleed there every time if I do, and the fact that I know that (which is sad) is because of this disease.
Whether I like it or not, diabetes has shaped a part of me. But it doesn't define me. And I'm proud of all I have had to do to fight to survive. I fight every day to survive. Every time I prick myself with another needle, I'm telling myself I want to survive. Not everyone can be that strong. And when all of that hardship mixed with triumph in trying to overcome this gets trivialized in a moment to people laughing at videos like these... well, it kind of hurts. It hurts a lot. I don't appreciate it when people decide to define what they think diabetes is on their own and it ends up turning out really derogatory towards people that never did anything to get the disease.

So that is why I started to take some offense to this situation. I don't find it appropriate for someone in a professional position that is not only teaching me but corrected someone that same day on people first language to show a video mocking Diabetes. If my friends do it, that's one thing. If I do it, that's my prerogative. I can deal with some humour. But I get frustrated at the fact that Diabetes consistently appears to be the ONE exception to the rule that it's not actually socially acceptable to make fun of medical conditions. Please don't trivialize such a serious condition in this manner, especially if you are in a professional academia setting... it erodes all of your credibility with me. I hope someday this mindset towards Diabetes changes, because in the meantime, people like me are stuck with a disease that can kill you and drastically reduce your quality of life, but it's okay to make fun of it.
That's all for this evening. End rant.

How Little You Know

Looking back on this last year, I am in utter and absolute awe at how fast everything has gone by. A year ago, I was prepping to complete my final competency for my didactic coursework at school. I was emailing my first clinical instructor and preparing for internship #1! I was planning a wedding.

Fast forward one year. I have traveled out of country. I've completed all of my clinical and didactic coursework for school. I'm graduating May 13th. I've been married for nearly a year. I'm applying for physical therapy jobs. My husband started his own journey in school on the way to becoming a physician.

I'm so content and full with life right now. It has had its ups and downs, but I'm truly blessed. I have a sweet and smart husband who loves me so perfectly everyday. I knew so little a year and a half ago, and when I got engaged! There's so much I could have told myself back then. The wedding was only the beginning of a much longer life; only a small part of the picture of our bigger every day lives. After all, what is life, but thousands upon thousands of little 24 hour days, each with their own unique experiences, events, emotions, memories? You have to learn to love the little days. The "chill" days, the gloriously normal days. Lacy this past year has learned about sharing finances, of letting go of some of her control freak-ness, and learned about trust. You have to trust the other person to act on their judgement. You also have to collaborate to come to decisions; not because of codependency, but heck, out of respect (that's been a big thing for independent stubborn me). That girl, since a year and a half ago, has learned about priorities. She's learned that if you ave one car that week and it's raining but it's you're only day off and you really just want to sleep in, you need to get up and take your husband to class. Because it's so rewarding to your relationship to do good and be supportive. I'll often stay at Kris's work until 10:30 at night just to drive him home so he doesn't have to bike home in the dark, or keep him company. Now I'm the one that drives so my husband can do homework in the car instead of the other way around! I think appreciatively back at the times where he'd stay at work with me until midnight practicing. Where he'd stay up with me studying until he fell asleep.

You do things and you don't keep score. It's not about who emptied the cat litter x amount of times this week. You're a team and you each do your part. My husband is probably never going to clean the same way I do. But he cooks amazing french fries and takes out the garbage all the time. It works out.
I've learned how important it is to care of yourselves and your soul. Be good to each other. Take time to get away. Hike. Hold hands at church. Put your phone away when you're at dinner. You may not even realize that your day to day is wearing you both down, and then suddenly you've been working all week, spent one night alone over dinner and that's it, and you realize you've hardly had time just to enjoy with each other in a long time. For me, I've learned a lot about work-life balance. Sometimes, it's about not taking that extra job and deciding to go out of town, just the two of you, that weekend. It doesn't even have to be anything fancy. You can travel on a budget. But the important thing is, you're taking time to tell the other person they are important.
You learn to listen better. Ask questions. Bring them water when it's 12 am and you just got in bed and you're tired. Let them play the music they like. There's so many things.

Because that person will do the same things for you. It's a privilege to share my life with someone who is just as devoted as I am. To know I have a permanent advocate for me, a forever teammate in life. Someone I enjoy not just the big things, but the every days, with. I've enjoyed these past 11 months of learning. I look forward to a lifetime of it.