Insulin-a-versary

It’s my two year insulin-a-versary! This is not to be confused with my dia-versary, the anniversary of my diabetes diagnosis which is in late December. These two dates, my initial diagnosis date and my correct diagnosis date, occurred more than a year apart from each other. Which is part of the reason why today is special for me. (You can read more about my diagnosis story here.)

It might seem strange to celebrate the day that my life entirely changed and I had to start injecting myself multiple times a day (and will have to do so for the rest of my life). But it is also the day that I started feeling relief, started feeling heard, and started really feeling better. This chronic illness had slowly been creeping up on me over years and years, taking away my energy, my happiness, and my ability to live my life. Getting my correct diagnosis as type 1 and starting daily insulin injections truly gave me my life back. I had been slowly dying, my body literally eating itself from the inside, and things were finally turning around.

What I didn’t know at the time of my initial diagnosis was that there was something called LADA, or latent autoimmune diabetes in adults, which is basically a very slow-progressing form of type 1. Before my original diagnosis I didn’t even realize that adults could get type 1, and had no idea there was a slow moving version of it1. Many doctors are not even aware of it, which is one reason why so many adults get misdiagnosed like I did, even though I presented with the classic symptoms. It was a frustrating year after my initial diagnosis and brief hospital stay, where the type 2 medications they original prescribed me worked ok for a few months but then slowly stopped helping. And I didn’t know why. I was doing all of the things I was supposed to and I was beginning to feel like utter crap all of the time again. I had one doctor blame me for not trying hard enough. It was not great. Luckily I eventually got a consult with an endocrinologist and within five minutes of just talking/listening to me, she told me I had type 1 and gave me some insulin.

Before that day two years ago, insulin had been held over my head as a punishment for not doing things properly. It really messed with me. And I think that a lot of the public also get this message (especially around type 2 diabetes), that having to inject a life-sustaining hormone into your body is a sign of weakness and failure. It is not. Everyone, every single person, needs insulin to survive. Most people’s bodies make their own. And most people have no idea how much insulin they use.

I tried hard for a long time to use as little insulin as possible. Because I had still internalized this message that insulin was bad. I didn’t eat foods that I wanted to eat because I knew I would need a lot of insulin for them and kept myself on a low-carb diet for months just because I was trying to be “good” and only use a certain amount of insulin every day. This was partly because my prescription was for a certain amount and I knew if I went over, I would run out early and that would be bad. But it was also because I didn’t think it was ok to just use the amount that my body needed for the food and life that I wanted.

I’m happy to say that I don’t feel that way anymore, but it took a long time. I also had to talk to my endo and have her prescribe more than my “average” amount per day so that I wouldn’t feel anxiety anymore about running out (which I almost did twice in my first eight months and actually only didn’t run out because I bought some extra insulin in Canada). I definitely use more insulin now than I did two years ago and there’s nothing wrong with that.

Some things that I didn’t realize two years ago would soon become a part of my life:

  • I have to schedule exercise into my day in a complex and nuanced way that I didn’t think twice about before
  • Some carbs are worth calculating for and some are not
  • I carb count things I see on TV without realizing I’m doing it
  • I hate the American health insurance system with every fiber of my being
  • Being your own pancreas is a lot of work and you never get a break from it
  • Anything can become a normal part of your day, even having two medical devices attached to you 24/7
  • Post-apocalyptic fiction is no longer as interesting to me as it once was because I can’t forget the fact that I would die a slow, painful death in any kind of scenario like that
  • I have opinions about different needle manufacturing companies (Tandem just changed the brand of needles that come with their insulin pump cartridges and I’m kind of annoyed)

This year, 2021, is also 100 years after insulin was first discovered. The 99th anniversary of the first insulin injection in a patient was earlier this week. In America, insulin is still too expensive. The list price, set by the pharmaceutical companies, is around $300 per vial when it only costs them about $5 to make it. They are extorting diabetics because we will literally die without it. It hasn’t changed in over twenty years and the price just keeps going up. In basically every other country, insulin is a reasonable price or even free. It can also be bought over the counter in most countries, which would be a huge positive change here. The prescription barrier, in addition to the financial one, is another way that insulin is not accessible here. It needs to stop. We need insulin for all and we need it now.

  1. Also, side note: fun fact! There are lots of types of diabetes! Not just the two that you’re familiar with. There’s gestational, type 3c, MODY, and some other ones. None of them – including type 2 – are caused by eating too much sugar.

Author: cynthiadangelo

I am a researcher, working on educational games, science education, and data visualization. I like photography, soccer, traveling, and teaching my dog new tricks.

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