Hey everybody, it’s rant-o-clock. I just read something that soured my mood. In part because I’ve heard this sort of thing so, so many times.
It was a piece about the price of insulin, and the human costs involved. The part that set me off was all the responses. I’m a fairly smart person, and I usually know better than to subject myself to the half-witted theories from the self-righteous and cowardly anonymous. But in this case, I was looking for responses from people who have shared my experiences. What I found was a whole lot of carbon blobs explaining that maybe if diabetics weren’t so lazy, undisciplined and food-addled we wouldn’t require medication. Here’s my perspective…
It was in the late nineties when I got sick. First it was my eyes. Things were getting blurry, and I started noticing more and more floating spots. So I got glasses.
Then I started feeling tired. At first it was just a late afternoon thing. I had no energy, I felt sluggish. Then it turned into an all day thing. Then, it became the default. I assumed I needed more exercise and that, as the father to a toddler and a preschooler, it was normal. But man, I was constantly weary.
Next came the thirst. We should all drink more water, and I figured my body was just telling me something. But it kept getting more and more intense. Near the end, I was drinking many gallons of water a day, and was going to the bathroom about every 10 minutes. In retrospect I figure this is when I should’ve started worrying.
But then, I started becoming unfocused. I started feeling…unplugged. Stupid even. Look, like I’ve said, I’m a smart, focused guy, but during this stage I just couldn’t concentrate. This is when I started to worry. I was getting sick, and I knew it.
I wasn’t very hungry, I was exhausted, I was drinking water non-stop, my eyes were screwed up, and I couldn’t concentrate. And every one of these things was getting worse, daily.
Then one Sunday, in February, She and I went to the Mall of America to get a few things done. We live not far from there and had been to the mall many, many times. But this day, a Sunday afternoon, we came out of a store, and I was lost. I had no idea where I was. And I don’t mean I didn’t know where in the mall I was. I mean I didn’t know in what place I was. Nothing looked familiar, or RIGHT. It was all jumbled and wrong. I asked Her if we could just go home, because I didn’t feel well. I think this is when She knew something was very wrong.
The next day, Monday, I went to work. I probably reassured Her that I was fine. But I knew I wasn’t. In fact, and this is very hard to type, I thought I was dying. I joke about it a lot now, but at the time I felt I was dying. I knew that the processes, the sensations, of dying had begun. I knew I was on that road. I knew it. But I didn’t know why, or how, or what to do next.
So I went to work. That day I was to sit with one of the producers I worked with and walk through an animation sequence. Here’s what I remember: She sat down and we chatted as I started loading pre-rendered frames for playback. Then she was shaking me, loudly saying my name. My reaction was irritation.
“What?”
“You were just sitting there, staring at nothing! For like, a minute!”
I apologized. I grabbed my keys and drove to Urgent Care. It felt like I’d crossed the Rubicon. It felt like I was picking up speed. I was well and truly terrified.
I walked into Urgent Care, and explained my symptoms. I remember the nurse putting her hand on my forearm, picking up the phone with the other and pushing a few numbers.
“Hi. I’m sending up a patient.” She gave my name. She hung up and said to me,
“You’re going to the fifth floor. They’ll help you there.”
So I went to the fifth floor. The elevator doors opened to a little hall. At the other end was an entry with no doors, over which was a sign that read, “International Diabetes Center”. There was a nurse under it, waiting for me. She had a little kit in her hand.
And right there, under that sign, she checked my blood sugar. The meter read 800 (or so). For all you Normals, 90-120 or so is normal.
She too put her hand on my forearm and said, kindly, “you have diabetes. Please come with me.”
She showed me how to give myself my first ever insulin injection.
Within a few days, I was better. I was normal (ish). I was not dying. Even my sight improved, though the floaties are permanent.
In the decades since that day, I’ve answered many questions about my condition. Most of them come from kindness and curiosity, and I’ll always gladly answer those. I’ve also been asked questions that were from curiosity, though not very kind. And a few times I’ve been asked questions that were neither kind nor curious. One theme is pretty common though: how do I know I need insulin? That I can’t manage with a better diet?
About a year after my diagnosis, I asked my endocrinologist a similar question. I was a little bitter, a little angry. I asked him how they knew I needed to give myself 3-5 shots a day for the rest of my life. I asked why I couldn’t just eat differently.
He gently reminded me that for one year, I’d been taking 3-5 shots of insulin per day. That would kill a non-diabetic, or even a Type 2 diabetic.
The proof, as they say, is in the sugar-free pudding (Which is gross, by the way, and makes me fart).
The reason I’ve told this whole story, this long preamble, is to point out that I need insulin. Without it, I will surely die.
I take three types of insulin. One I take every night. This one helps prevent spikes while I sleep. I take another once a week, every Wednesday morning. It gives me a critical baseline for the week. It helps manage the peaks and valleys. The third I carry with me. It covers everything I eat.
I need all three to manage my blood sugar, because my pancreas is a quitter.
I needed to refill the weekly one the first of December. A one-month supply cost me $720. Last week, I needed to refill it for January. It cost me $720. I’ll have to fill it in 2-3 weeks for February. It’ll cost me $720.
That’s for one of the three I’m required to take.
I called ExpressScripts once, spending 8 hours on the phone arguing for the right to spend hundreds and hundreds of dollars for insulin because they didn’t want to cover it at all. On the phone I was told, in a very knowing and haughty tone, that there’s an alternative to my weekly dose, and that maybe I “should just try that one.” I told her that I was initially prescribed that one and that it caused me to shit myself uncontrollably. I asked her if she knew what my insulin did. She had no idea. I thanked her for her medical advice.
Our system is ridiculous and broken beyond measure.
People are dying because their insulin is too expensive. Phone-line insurance automatons administer medical advice. Online troglodytes offer solutions and admonishment for my gluttonous addictions. We are an easy target. We have no choice but to pay up.
What do you call, “pay up or die”?
Ransom. You call it ransom.
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