It actually feels good to start getting back into creative writing. I've neglected my blog for a while, admittedly because writing and painting took a back seat as I've lost my creative spark/artsy side somewhat these past few years, and also because I've been in the process of converting my blog into a book for some time.
I'm going to try to work on not neglecting my creative side a little more. My blog is definitely integral to that. It's a myriad of various musings and writings--a lot of them like a time capsule, reflecting parts of my life that aren't mine anymore, and even political views that don't reflect me anymore. I like to leave everything though. It's a story of my very own that reflects my growth and change for nearly 15 years, something I wouldn't change.
Regardless of it being a myriad of things, I originally started my blog as a way to cope and process being diagnosed with Type 1 Diabetes. I kept it diligently throughout college, and classmates and friends would tell me they found it enlightening to learn about what life with Type 1 Diabetes is like.
Deciding to start my blog back up last week was somewhat fortuitous I suppose, because now that I'm back in college, I feel like I have a good reason to write since I've gotten questions about Diabetes. So, I'm throwing together some thoughts/day-to-day experiences about what Diabetes is like in case folks want to read.
I find it somewhat ironic to write about this now, because Type 1 Diabetes was honestly something that wasn't very visible on me back when I was in undergrad and even grad school. I didn't have access to good health insurance, or even any, much of the time. That meant I gave multiple daily injections and needle sticks to check my blood sugar because it's what I could afford. I didn't have an insulin pump, I didn't have a continual glucose monitor, and I didn't have cool additional tools like inhalable insulin to fine-tune my blood sugar. My struggles with access shaped a lot of my writing back then. Access issues are actually why I found my way back to law school. My blog, in a way, made my Diabetes more visible, which helped me feel like I was a normal human again--after feeling foreign in my own body for so long after my diagnosis. Now though, the ironic fact is because I can afford proper care, Diabetes is more visible on me than it has ever been, which comes with its own set of new experiences.
In going back to school, I stressed and wondered how to approach professors about the occasional beeps and sounds I make in class, I actually can afford a doctor to get needed accommodations, and yes, I make noises occasionally that make classmates glance at me curiously. I guess what I'm trying to say by that is this experience is actually all as new to me as it is to my classmates. I've never had to stress about what TIME to give my insulin so I don't make a loud beep in class, or worry about when I do, or jump to cover my pump if it happens unexpectedly, or wonder if folks are going to stare at me if I take inhalable insulin mid class so that my blood sugar comes down because it's been a particularly rough day. I'm navigating this all too, which has been a unique experience for me I'm still processing.
Anyways, here is a little rundown of what Type 1 Diabetes is.
I was diagnosed with Type 1 Diabetes at 17. I have no family history, and it was very sudden and unexpected. Type 1 Diabetes is an autoimmune disease that attacks something called Beta Cells in my pancreas. You don't do anything to cause Type 1--it's something that just happens. A mix of environmental and genetic factors can cause it, but you don't have to have a family member with it to get diabetes.
Back to Beta Cells. Beta Cells make insulin -- which your body uses to break down food molecules, and most importantly carbohydrates, when you eat. Without insulin, your body cannot bring down the blood glucose (Diabetics use the slang term "Sugar") that naturally gets put out into your bloodstream by your liver, and it cannot bring down blood glucose from food that you eat. This means that I'd die in approximately 3 days without insulin, but potentially sooner. I can't go more than 3 hours without insulin without rather significant and unpleasant effects, including spiking blood sugar and oftentimes terrible nausea, sometimes vomiting, and extreme thirst and fatigue.
Low blood sugar, or "Lows" are the opposite- you get them from being an insulin user. Too much insulin, too much activity, heat, or any other number of activities can cause a dangerous low. These must be treated immediately or you will die. This means I always have a snack on me (fruit gummies are my choice) and I remain vigilant to treat lows quickly if they happen.
So how do you manage Type 1 Diabetes? You take insulin. There's many ways you can take insulin. If you choose to do so "manually," without a pump, that means that you'll generally give one injection of "long acting" insulin that brings the blood glucose down that your liver naturally produces (to keep you in a normal range regardless of food you eat), and then you have to add up the carbohydrates in every meal you eat and administer short acting insulin that works faster than long acting insulin to keep your blood glucose from spiking from the food you eat. We call measurements of insulin "units." Measuring units is what makes diabetes so incredibly hard-- there's no magic universal formula for how many to give. It's different for everyone, and can vary based on your body makeup, your weight, stress, the time of month, and numerous other factors.
Not every meal comes with an easy carb count either. Oftentimes I have to just guess the carbs. I'm pretty good at it. If I'm off on my math, I'll have to adjust in post. If I give too much insulin, my blood sugar can drop to dangerous lows that require immediate treatment. If I don't do this right and my blood sugar is consistently high, this will lead to kidney damage, nerve damage, dangerous ulcerations, slow healing, foot pain/nerve pain (Neuropathy), potential stomach digestion issues (gastroparesis), retinopathy (issues with your eyes), amongst other things. And of course, you have to know what your blood sugar is before you give insulin. If you're already low if you give insulin for food, that can make you lower. If you're already high, you might want to adjust what you're eating, and you'll certainly have to give yourself more insulin to "correct" the high blood sugar in addition to giving insulin for the food. It's like a scale, and every day, for every second, you can't ever get off that scale.
If it sounds tiring, it really is. Diabetics have so much autonomy over their care, which also makes us uniquely blameworthy in the eyes of healthcare providers sometimes. If my blood sugar numbers--my A1C aren't good--that's my fault. My endo doesn't make me feel bad for that (and mine is in a normal range), but it creates very unique psychological impacts that I'll have to unpack in a separate post.
You can also use an insulin pump. Everything I've said above is functionally the same, but instead of giving two types of insulin, you use one, just short acting, and you don't give multiple daily injections. You instead insert a "cannula," essentially a needle under the skin, connected to a device you fill with insulin that can have tubing or be tubeless. Mine is tubeless and called a "pod" (Omnipod), and I change it every three days. My endo helps me with the insulin settings, which I adjust as needed. I receive a dose of short acting insulin every hour, and my pump has an internal calculator where I'll add up the carbs in my food and it'll dose out the appropriate amount of insulin for me based on my blood glucose and how much insulin is already in my system. It can even sometimes catch a low blood sugar before it happens and turn off my insulin to try to prevent it, and can start dosing out insulin for me if my blood glucose is high.
It works in tandem with my continuous glucose monitor (CGM) which uses another needle under my skin to give me 24/7 blood sugar readings (I change this every ten days), as opposed to having to prick my finger and only get readings a few times a day. Being able to know what my blood sugar is doing at all times and have an insulin pump that helps me manage my blood glucose has been such a lifechanger and one I think all Type 1's should have access to. My pump does unfortunately beep when I self-administer insulin, several times before I have to change it every 3 days, when it loses contact with my CGM, or when my blood glucose drops below a certain level. I can't turn this off.
Pumps aren't perfect. I've accidentally sweat it off or bumped it on something to dislodge it, and it's not just something I stick on and don't worry about my Diabetes anymore--I still have to be in full control, it just helps me as a tool. Pump technology continues to improve though so I am hoping for a fully automated version someday!
My skin is also lowkey allergic to my insulin pump from several years of exposure to the adhesive, so it is often itchy and leaves rashes on my skin that make me feel self conscious sometimes. It's a pain in the ass in the summer to swim with it and a lot of times it falls off or I have to tape the hell out of it to try to keep it on. It isn't easy, but a pump certainly does make my life better.
On top of that, if my sugar is still being stubbornly high, I can use inhalable insulin to bring my sugar down faster. I also take an injection at mealtimes that helps my stomach not empty so quickly, called Symlin, which is a synthetic version of a hormone called Amylin. Type 1 Diabetics often struggle with excessive hunger because Amylin is another hormone made by our beta cells, which don't work, and Amylin helps food stay in your stomach the appropriate amount of time and makes you feel full.
So... that's Diabetes in a very quick nutshell! It's a lot, and the visibility of my devices is something I fought against for a while. Even when I could finally get a pump, I put it off, not wanting to give people something to stare at. Reconciling with the concept of Diabetes being a "disability" is also a post best saved for another time. But, most importantly, all of my devices and medications help achieve the very singular goal of trying to make Type 1 as small of a part of life as possible. Diabetes won't ever play a "small" role in my life, not truly. But I'm very grateful to have all the tools that I do. It certainly makes life better.
If you're curious, I hope this helps shed some light on life with Type 1 Diabetes, and if you've made it this far into my writing, thanks for following along.
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