All told, I spent two nights in the ICU, and three days in the hospital. This comprised:
- Dozens of visits by social workers, nutritionists, endocrinologists, diabetes educators, doctors, residents and nurses
- 4 diabetes education videos, each made in approximately 1988, accessed from the TV in my hospital room
- 1 completely absurd and frankly hilarious “shaken baby syndrome” video, made in approximately 1981, which gave me my first good laugh in many days (you had to be there)
- 0 showers
- Horrible food
- My first introduction to carb counting
- My first introduction to insulin injections
- My first introduction to (accurate) blood sugar testing
- The perfection of my go-to defense mechanism
I did a lot of acting in high school and college, and while I don’t especially do it anymore, I find it an effective tool as a defense mechanism. When I am overwhelmed, frightened, or simply not sure how to survive a given experience, I often just put myself into someone else’s body – make the conscious decision to “play” a character who just happens to be going through whatever I am going through. It wasn’t that I had diabetes, it was that I was playing “Jessie”, that overweight chick who got diabetes.”Probably Type 2″. How embarrassing for her.
And so, when I walked out of the hospital three days later, I (foolishly) felt like I had a pretty decent handle on things. I mean, I was no longer in DKA, and although my blood sugar wasn’t within normal range, I had been assured by the doctors that, in the aftermath of something as extreme as this, it can often take the body days, or even weeks, to settle back down. And I no longer had the bladder of a 75 year old man! When the DKA went, so did my incessant need to pee, constantly. Miracle of miracles.
I was also carrying seven prescriptions which demanded to be filled ASAP: for a long-acting insulin, for a short-acting insulin, for the pen needles which would allow me to inject the insulin, for a glucometer (although, fun fact: if you get diabetes you’ll get so many free glucometers you’ll never actually have to fill a prescription for one. Currently, today, there are 8 glucometers in my apartment), for lancets, for glucose test strips, and for alcohol swabs.
No one had told me if I had Type 1 or Type 2 diabetes – because at that point, it honestly didn’t matter. The treatment immediately after DKA, whether you’re a Type 1 or a Type 2, was the same: GET INSULIN INTO YOUR BODY. When Type 2s go into DKA, their bodies, in the shock and trauma of it, often lose the ability to produce insulin temporarily. If I was indeed a Type 2, hopefully in the coming weeks and months, my body would recover some of its own ability to make insulin, and I could stop injecting it as much – or, fingers crossed, entirely. But that remained to be seen. True, it was still possible I was a Type 1, but I kept remembering Babysitter’s Club Stacey’s beautiful, skinny face and the prospect (to my, at the time, despair) was looking less and less likely.
So there I was, diabetic, discharged. Blood sugar sitting, probably, around 275 mg/dL (bad), hair unwashed (gross), and ketones, marvelously, gone.
I remember the walk to the front door of the hospital with extreme, painful clarity. With every step it became harder and harder to maintain my perfected defense mechanism. It was easy to play “Jessie, that girl who got diabetes” when I was in the hospital – because the hospital “set” was so extreme, so different from any place that the real Jessie ever went. But every step I took away from the kind, compassionate staff who had supported me through my first few days with this diabetes took me closer back to my life – a life I would now have to live with a chronic disease. I was going back to the same life, the same environment, but everything was completely, utterly different.
I cried. I tried not to, I really, really tried to hold it in, because frankly I was afraid if I started crying it would all come out, everything – all the fear and the shame and the worry and the disgust, and the pain would just pour out of my body; my chest would spill open and I’d empty myself out until there was nothing left and I’d have dissolved into a puddle at the door to the hospital. I realized, as I walked, that everything I was doing – walking, wearing clothes, using my eyes, ears, nose – was stretching my spirit to its absolute limit. I was hanging on by the thinnest of threads; the slightest upset and I’d completely come apart. Don’t cry.
Don’t cry don’t cry don’t cry don’t cry don’t cry don’t cry don’t cry don’t cry don’t cry don’t cry don’t cry don’t cry don’t cry don’t cry don’t cry.
But, of course, the harder I tried not to cry, the more the tears squeezed themselves out, until I was full-out sobbing in the big marble lobby of the hospital. Blerg. What a cliché.
My parents had suggested I stay at their place for a few days, but the thought was intolerable. I had been so dependent for days; it seemed essential to get some- any – independence back. So my mom had to settle for driving me home, instead. Walking at my side as we excited the hospital, she noticed my sobs and steeled herself to say something supportive.
“I know it seems hard,” she said.
And then, instead of finishing her sentence, she cried.
I can count on one hand the number of times in my life I’ve seen my mother cry. Normally, she is a source of relentless optimism, and seeing her cry is strange and scary and always completely disturbing. Seeing her cry in this moment was awful. No holds barred, no strings attached, all-out awful. Worse than the look on my dad’s face, worse than my doctor saying “It’s diabetes”, worse than collapsing in the subway or Dr. Smug and his scathing judgment. If I thought it couldn’t get any worse in any of those moments, I hadn’t yet seen my mom cry. This was it. This was the worst.
I actually had that thought – at that moment, to myself, I said “This has to be the lowest point.”
It has to be.
Because if it can get worse than this, I quit.
I’m happy to report that, thus far at least, I was right. That was the lowest point.
Not that it got especially “better” or anything. I had plenty more moments where I cried, plenty of more moments that brought their A-Game in the competition for “worst moment.” Just an hour later, standing at the pharmacy, and paying over $250 for those 7 initial prescriptions (with insurance) was pretty bad. Or no, wait, sorry – before that, when the pharmacist announced she couldn’t fill my prescription for Novolog (a short acting insulin) because my insurance company was denying it. This medicine that I had just been told was essential, lifesaving, and for some unknown reason insurance had decided they wouldn’t pay for it – I could pay for it myself, of course, but that was going to cost me over $400 for a month’s supply.
Several frantic calls to the hospital later, it turned out to be just another example of bureaucracy and insurance specificities that I would come to be oh so familiar with in the coming months. See, there are three kinds of short acting insulin: Novolog, Humalog and Apidra. They’re essentially the same, although they all sort of hit and stay in your system in slightly different ways. Most insurance companies have partnered with one of the three – mine, it turns out, was a Humalog company and wasn’t going to pay for Novolog without a Prior Authorization. So, I got a Humalog prescription called in instead – an easy fix for a stupid, wasteful, ridiculous insurance-related problem.
I could write another blog about the tedium of insurance negotiations. Everything – literally, literally everything – has been a battle to keep all my medication affordable while still getting the medication I actually need. But you know what? That blog would be boring, and frankly I don’t want to re-live any of the insurance stuff anymore than you guys want to read about it. Suffice it to say, having a chronic disease without being a billionaire pretty much sucks.
Sometime around the second day I was in the hospital, a social worker came into my room and explained that it was my “right” to have up to five visiting nurse service visits after I was discharged. The nurses, she said, could help me make sure I was injecting insulin correctly and testing my blood sugar properly. When I told her that wasn’t necessary, she’d seemed so offended and shocked that I, feeling inexplicably guilty, quickly reneged and accepted the offer.
So, at 8 AM the next day, a nurse showed up at my apartment to watch me inject insulin and test my blood sugar.
Remember that thing I said about being super sleep deprived at the hospital? It was my first night home, and I had spent most of the previous day exhausting myself through crying – waking up for an 8 AM nurse visit wasn’t exactly my top choice for the morning’s activity. However, dutifully, my boyfriend and I dragged ourselves out of bed and prepared for her visit.
Before I continue, however, I should probably explain the regimen I had been given for managing diabetes when I left the hospital:
A normal body produces insulin in different amounts throughout the day. When you aren’t eating, your body produces a steady stream of insulin to keep your blood sugar stable. When you’ve had a meal, your body produces more in response.
Most insulin therapies today attempt to mimic that output – giving you a steady stream that’s released throughout the day, but also more in your system around mealtimes. For that reason, I had been given two different types of insulin to take – a long acting that I would take once a day at around the same time, that would slowly release into my system at a regular rate over 24 hours, and a short acting that I would take before each meal, that would stay in my system no more than 4 or 5 hours, and help control my blood sugar after eating.
Both of these insulins come in “insulin pens”, which get injected into your body using disposable pen needles. They can be injected into your leg, stomach, or arm, although, as I would soon find, I vastly prefer the stomach because I find you get the least bleeding there.
To make things simpler for me in the first few weeks after discharge, the hospital doctors had told me to eat a consistent amount of carbohydrates at each meal, and to test my blood sugar before I ate and decide how much short acting insulin to take on a sliding scale, depending on what my blood sugar was. (If it was higher, I took more, if it was lower, I took less.)
As I was soon to find, in those first few days (and weeks) after I got discharged, it was always higher. (More on that later).
So, the nurse arrived, and Stefan began preparing breakfast so that she could watch me inject my short acting insulin and I could eat right after. She freaked out when my blood sugar read at like, a 283, and insisted on calling the doctor, (what doctor? It was a Saturday…) and finally got through to someone at the hospital who approved adding a few more units of Humalog onto the dose I was about to take. As she observed Stefan making food, she made a smiling comment about how I shouldn’t let him cook for me that often, or I’d gain even more weight.
At one point, she stared at me the way you observe a captive animal at a zoo – sadly but with fascination, and remarked that I was so young to get diabetes.
“WHAT DO I DO WITH THAT?!” I screamed at her. “YOU’RE A NURSE, FOR GOD’S SAKES! DO YOU HAVE ANY CONCEPT OF PROPRIETY?!”
No. I didn’t say any of that. Instead, I smiled, nodded, and kept doing my diabetes tasks so that I could get her out of my apartment.
It was, if I need to say it, a perfectly lousy weekend. I had an appointment on Monday to see my primary care doctor again, after which she worked her ass off to get me an appointment with an endocrinologist (a doctor who specializes in the endocrine – hormone- system, and thus, diabetes) by Tuesday.
If I could go back to that weekend and give myself any words of advice, I would say “Just make it to Tuesday. Just make it to the endocrinologist. You’ll get some answers then.”
And I would get some answers on Tuesday. But in the meantime I had to survive two more visits from those stupid visiting nurses, and cope with the fact that every single time – every single time – I tested my blood sugar (which I probably did 5-10 times a day that weekend), it registered above 200. (The goal for diabetics? Around 100).
I didn’t know anything that weekend. I did so many things then I’d never, ever do now – from eating bread with breakfast (something I can pretty much never do again; my system positively revolts), to sleeping past 10 (again, something I can pretty much never do again what with the system revolting and all). I still didn’t even know what kind of diabetes I had. It wasn’t until Tuesday, when I got in to see the endocrinologist, when I was going to get those aforementioned answers. I wasn’t going to like them, but I was going to get them – hard, painful answers about weight gain, diabetes, and, of course what type I was.