What. Just. Happened: TYPE WHAT NOW? (Part 4)

Part 4.

For Part 3, click here. 

For Part 2, click here. 

For Part 1, click here. 

It hurts to remember this. It hurts to remember, authentically, the emotions and feelings I had when I was in the hospital. I wish I could change them – I wish I could have understood then what I understand now, because even though I’ll deny it to your face, I’m actually a highly superstitious person and that half-spiritual-half-paranoid part of me wonders if, in the intensity of my hopes and wishes that night, I actually impacted the course of my disease, somehow – like, by wishing hard enough I made the outcome what it was. For those of you who are not superstitious, you’ll argue that I’m being insane/unreasonable. And I really hope you’re right, because the truth, the ugly, gross truth was that in that moment in the ER, when the beautiful resident told me that they “ran some tests” and that it was “looking like it might be type 1”, the first thing I felt was hope.

Phew. Eew. I will take a pause from this moment, from this ugly moment I am not at all proud of, to provide a contextual gamebreak:

So, there’s this cycle of “eat carbs -> carbs become glucose -> pancreas makes insulin -> insulin allows cells to use glucose for energy”. We’ve established that, in diabetics, this cycle gets interrupted. How? There are two ways. These ways are extremely different, but because they both deal with this glucose-insulin-energy cycle, they are both classified as “diabetes”: Type 1 (or autoimmune, or insulin dependent) and Type 2. We’ll start with Type 2.

29 million people in America have diabetes. If you’ve ever heard someone (on the news, at the doctor’s office, in pop culture) talking about diabetes, they rarely preface it with “type 1” or “type 2”. That’s because, of the 29 million people with diabetes, 95% have Type 2 diabetes. So, when people say “diabetes”, they usually mean “type 2 diabetes”. In Type 2 diabetes, the cycle starts out working pretty well. You eat food, the food is converted to glucose, your pancreas gets the signal to make insulin, your beta cells (the insulin-producing cells in your pancreas) make that insulin, and send it on its way.

Then something happens. It’s something that doctors refer to as “insulin resistance”, and it means that your cells somehow stop processing the glucose as well as they should. They begin, literally, resisting the insulin that’s trying to get the glucose in. A little might get in, but not enough. So the amount of insulin you’re making is suddenly insufficient. Your cells might get a bit of energy from all that glucose floating around, but a lot of it keeps floating around – hence, your blood sugar goes up. Usually, your pancreas responds by making more insulin – makes sense, right? It realizes the amount it’s produced, which should have worked, isn’t enough, so it makes more to compensate. Before the disease progresses too much, that “more” can often make up the difference. However, the longer you go with Type 2 diabetes without treating it, the worse it gets – your body is compensating by producing more and more insulin, but your cells are still resisting it, so the “more” stops being enough, but still your cells demand more, more, more. This often overtaxes or “burns out” the pancreas, and eventually people with Type 2 diabetes can lose the ability to produce insulin at all. However, that’s after going a long time with the disease – decades and decades, usually. And if you treat yourself well, and manage the disease, that never has to happen at all.

Sometimes I think the medical profession thinks people with Type 2 diabetes are very, very stupid, because it often “explains” Type 2 diabetes by saying it’s a condition where your body “doesn’t use insulin properly”. True, but the mechanism is pretty simple, too, and it’s described above. The very, very good news about Type 2 diabetes is that it’s a progressive disease. It doesn’t “hit all at once” – it’s usually a slow mover. Your blood sugar starts slowly going up over the course of months, years. If you have a good doctor and you’re vigilant, you can really get a handle on it. See, different foods hit your system different ways. Simple sugars, white flours, fried foods (and, as we’ve established, juice) – they become glucose very, very quickly. They present something of a challenge for your pancreas, which has to work FAST and HARD to make enough insulin to keep your blood sugar under control when you eat them. But other foods – complex carbs, vegetables, etc – are much gentler on your pancreas. They convert into glucose slowly. They’re like physical therapy for your pancreas, especially if your pancreas is overtaxed from the effects of Type 2 diabetes. If you eat enough of these foods (and do other things like exercise, which, when done at the right time, “burns” glucose without your body having to produce insulin at all), you can often restore function of your pancreas pretty effectively, and you can help your cells respond to insulin a lot better. And, weight loss. Weight loss helps Type 2 Diabetics big time. Weight loss literally changes the shape of your cells and helps them become more “insulin sensitive”.

Of course, it’s not quite that simple. Type 2 diabetes develops because of lifestyle (lack of exercise, weight gain, eating a lot of foods that tax your pancreas…), but it is also genetic. Some people are just very unlucky, and predisposed to it. If these pre-disposed people gain some weight or stop exercising as much or start eating more simple sugars and carbs, it can really increase their chances of getting Type 2 diabetes, much more than if a “non-predisposed” person gained weight. Some people, despite working very hard to manage the disease, can’t fully stop the progression. Genetically, they drew the short straw. But the bottom line is, Type 2 diabetes is, if not “curable”, at least fully “manageable.” For many extremely impressive folks (including my grandmother!), the right diet and lifestyle changes (and perhaps a bit of medication), and their blood sugar numbers can fully return to normal. A doctor, at that point, would consider your diabetes in ‘remission.’ You might never have to take medications, be able to stop the ones you’re on, or never have to go on insulin.

It’s hard. You have to be extremely conscientious of food choices, you have to be extremely diligent about exercise, and you have to monitor constantly. And, you have to get at least a bit lucky, genetically. But there’s hope.

So that’s the prospect facing 95% of the 29 million people with “diabetes”. For the last 5%, things are different. Unlike Type 2 diabetes, Type 1 diabetes is not a progressive or lifestyle-driven disease. Rather, it is an autoimmune disease. That means, something goes wrong in your body; your immune system. It has nothing to do with your weight or food choices or lack of exercise. In one random moment, a signal gets crossed somewhere and your body suddenly perceives something perfectly harmless inside itself as a “disease”. Your immune system takes the necessary steps to remove this “disease” (NOOO SILLY BODY A HEALTHY PANCREAS IS NOT A DISEASE) and it begins attacking itself. In Type 1 diabetes, your body suddenly decides those innocent little beta cells in your pancreas, the ones that produce insulin, are foreign invaders, and it sends antibodies to kill them.

Why does this happen? We don’t know. Doctors don’t know. The origins of type 1 diabetes have been studied for years and years and no one has especially gotten any closer to figuring out what flips that “disease switch” for some. Theories include environmental factors, unknown viruses, overuse of antibiotics, and genetic links (although – fun fact: only 10% of people with Type 1 diabetes have a relative with Type 1 diabetes). So your body starts killing off your beta cells, and consequently you lose the ability to produce insulin. No beta cells, no insulin. No insulin, no way for your cells to access the glucose that’s floating around your bloodstream. So your glucose rises, your body panics, your kidneys kick into overdrive…and, when not treated, DKA.

There is no cure for Type 1 diabetes, and no way to send the disease into “remission”. Without beta cells, your body will never be able to produce insulin. The only treatment is regular injection of man-made insulin, 24/7, into your body. The risks of this are numerous, but mostly center around the fact that we are human beings, not human pancreases, and we will never have the ability to understand exactly how much insulin our body needs at any given time as well as a pancreas will. And unfortunately, the consequences of having too much or too little insulin in your bloodstream at any given time are numerous, and potentially very dangerous.

So now, perhaps, you understand why I am ashamed to admit that, when that resident told me “it’s looking like it might be Type 1”, I felt hope. I was looking at the difference between a controllable chronic disease that, with hard work, I could potentially arrest or reverse, and a less-controllable chronic disease without a cure that would require intensive treatment for the rest of my life, and I was hoping for the latter.

In my defense, I didn’t at the time know all the differences between Type 1 and 2 diabetes as I just outlined for you. My only experience – quite literally my only experience – with Type 1 diabetes was a scene from the 1995 Babysitters Club movie (have you seen it? HUGE part of my childhood. And yeah, embarrassed to admit that the movie made a bigger impression on me than the books…) Anyway, in the movie, Stacey, who is portrayed by a very beautiful and very skinny actress, is a Type 1 diabetic. She’s the babysitter who loves to shop and is super into makeup and all that stuff – the first time we meet her in the film, she flounces into their weekly meeting holding a delightfully varied collection of shopping bags.

“Sorry I’m late!” she intones, looking sheepish, “There was this really big –”

“SALE!” everyone finishes, smiling indulgently. She smiles back. They know her so well.

if this is what type 1 diabetes looks like, sign me up
if this is what type 1 diabetes looks like, sign me up

Anyway, in the movie, Stacey meets Luca, the super hot 17-year-old cousin of one of her babysitting clients. From somewhere super mid-90s romantic, like France. (Can we also discuss the fact that Stacey is THIRTEEN, and her love interest SEVENTEEN? I mean, this is not, like, a 31-35 age difference here. I hadn’t even hit puberty by thirteen. BUT ANYWAY).

you can tell he's ARTSY and from FRANCE cuz of his shirt
you can tell he’s ARTSY and from FRANCE cuz of his shirt

Stacey and Luca are going on their first big date, and Stacey’s all excited because Luca is from FRANCE and maybe they’re going to go to a FRENCH RESTAURANT or something equally fantastic AMIRITE, but then Luca’s like, “I thought we could go for a hike,” and Stacey’s face drops and she’s all “A hike! HORRAY!” while inside she’s like “A hike! DANG!” because obvi she likes shopping, so hiking is NOT her forte. But she’s into Luca so she goes anyway. And they’re on the hike, and Stacey doesn’t look too good, but Luca barely notices because he’s all appreciating nature or whatever, but then Stacey really starts to struggle, like, she gets all white and pasty and really starts slowing down (makes me think of one obese 26 year old struggling to do a Barre workout class in her living room…), and then she like, collapses on the ground prettily, and Luca turns around and he’s like “Stacey! What’s wrong?” and she goes (god, I remember this moment so clearly) “Luca! I need… some food!” Flash forward to a few minutes later, Stacey’s on the ground, and her pretty pale face is a little less pale (but no less pretty) and she’s eating an apple that the enigmatic Luca pulled from his hiking bag, and he’s looking concerned and he goes “Why didn’t you tell me you were a diabetic??” and she says something about how, like, she thought he’d make fun of her (??) or not want to date her, and he smiles wisely and assures her that would never, ever happen.

To this overweight 8-year-old, the scene made quite an impression. What was this glamorous disease, where you got to be skinny and pretty (and blonde) and super hot French guys would fawn over you? The worst case scenario for type 1 diabetes appeared to be that you would collapse prettily and then – wonder of wonders – you could demand FOOD? Remember: I was an overweight 8-year-old. All my interactions with food until this point had been people suggesting that I was “probably done” with my dinner or that I could “probably wait” to eat until lunch or that it “might not be the right time” for a snack. The idea of having some condition where food became something you required that urgently, for like, medical treatment, AND you still got to be super skinny felt, frankly, too good to be true.

Of course, when that resident told me “it might be Type 1”, I was 26, not 8, and also not a complete idiot, and vaguely aware of the permanence and severity of Type 1 diabetes, but still, I cringe to think it, I cringe to write it… the idea that “it might be Type 1” filled me with hope.

See, Type 1 diabetes would mean that I hadn’t done it to myself. Type 1 would mean that I hadn’t, in my fatness and laziness, in my utter lack of willpower and a lifetime of poor choices, ruined my body, eaten my way into chronic illness usually reserved for the much older, the much sicker. Type 1 diabetes could happen to anyone – children, for god’s sakes; skinny and beautiful people got Type 1 diabetes. If it was Type 1 diabetes, I could be a victim. If it was Type 2 diabetes, I was a fat, complicit, lazy waste who deserved what I got.

And for some reason, I kept thinking about my parents. About what they would tell their friends. “Jessie got Type 1 diabetes” had such a mournful, significant air. Their friends would cluck their tongues and nod sagely and say something conciliatory about the randomness of the world – how unfortunate it was, the way these things just struck people for no reason. “Jessie got Type 2 diabetes” didn’t sound so noble, in my head. It had something severe and, always, shameful about it. Their friends would nod sadly, in sympathy, then go back to their houses and whisper behind closed doors about how overweight I was, how it was unfortunate but not, you know, surprising. They’d speculate on the poor care I must have been taking of myself; in my worst fantasies, they’d condemn my parents for failing at raising me, exchange looks that implied I deserved it, that perhaps this would teach me the importance of good health and good choices. In my worst fantasies, my parents dreaded the moment they had to share this news with their friends; were embarrassed, ashamed, and angry at me for putting them in this position.

(NB: I’m not sure why all my fantasies involve my parents having the world’s meanest friends. My parents’ friends, in real life, actually seem like perfectly nice people.)

Spoiler alert: the entire time I was at the hospital, I never got a definitive diagnosis between Type 1 and Type 2. The problem was, I didn’t perfectly fit into either category. Type 1 usually strikes the very young; children under 20… maaaybe under 25. And usually, for whatever reason, the victims are often slim. But Type 2 usually strikes the old, or at least, the older-than-me. Meantime, Diabetic Ketoacidosis (DKA) doesn’t usually present in Type 2 diabetics, but it can. And 50, 60, 70 year-olds can get Type 1. Just as an 8-year-old can get Type 2.

There are exceptions to every rule, but the bottom line was this: I was too old and too fat for Type 1, but too young and too suddenly-sick for Type 2.

I saw many doctors, nurses, residents, nutritionists, diabetic educators, and social workers when I was hospitalized. Each one seemed to have a different theory of which Type I was. The majority, though, I’m sorry to say, took one look at me – at my big arms and my double chin and my big stomach – and assumed Type 2. It wasn’t that they were mean or condescending about it, mostly they, like everyone else, just seemed sad, but there was also an incredible bias towards my size and the fact that I probably had eaten my way to this disease.

Nonetheless, when I look back on the time I spent in the hospital, I feel incredible, overwhelming gratitude to the dozens of people who took such amazing care of me. I say this without irony or cynicism – the hospital staff was amazing. They took a very overwhelmed and very scared and very horrified person and treated me with respect, compassion and thorough care. The problem I perceived was that everyone who worked in the hospital seemed extraordinarily overloaded – the visits I got from the dozens of specialists (endocrinologists, nutritionists, diabetes educators, social workers) were often no longer than a few minutes. I received, in fits and starts, a crash-course on diabetes and diabetes management that, despite the staccato delivery, I never would have gotten otherwise.  Yes, with one exception, I have nothing but admiration for every single person I came into contact with at the hospital.

The exception, though, was a particular doctor. Let’s call him Doctor Smug. Dr. Smug sauntered into my ICU room the morning after I was admitted to the hospital, read over my chart, gave me an up-down, smirked, and announced he’d be back later to teach me “everything I needed to know about diabetes.” Come back he did, a few hours later, and began his oratory with the following pronouncement: “The problem,” he said, pausing dramatically, “Is diabetes.” Thank you Dr. Smug. I thought I was here for gout, so this is useful.

He continued on, describing the basic mechanism of diabetes as I’ve described it to you already, but then his lecture got pretty patronizing. “This is probably Type 2 diabetes,” he said, raising his eyebrow at my double chin. Soon, he was rambling on about “avoiding all the unhealthy foods” I was probably eating and “doing exercise.” He said it so slowly, so painstakingly slowly, as though I was an idiot, that I half expected him to finish by saying “Exercise. E-X-E-R-C-I-S-E. Ever heard of it?”

“It’s pretty much up to you how you manage this,” he continued, giving me a look that said he was not especially optimistic about my ability to do so. “Exercise would help though. You could, say, walk to work,” he suggested, the way you “suggest” to a toddler that sharing is good, or making “poop poop” in the toilet is the right place! I didn’t bother telling him that I lived in Queens and worked in Soho, and to “walk to work” would mean over 2 hours of walking over highways and bridges with questionable pedestrian paths. I did, however, mention that I already did exercise. He smiled, unbelieving. “Really? What do you do?” Suddenly feeling horribly judged, I mumbled something about my thrice-weekly trips to the gym for the elliptical and bike, and the jogging I had recently taken up. (Crazy, right? I’d never tried jogging before in my life, but, thanks to the Couch-to-5K app, I had started jogging in the months before the whole DKA mess had started.)

To Dr. Smug’s credit, he did not laugh out loud when I said “jogging”, but I watched the disbelief pass his face as he nodded. I saw the internal monologue he was barely trying to contain: “No way this chick jogs.” He continued his lecture about eating less and moving more, and my face burned with shame. Meanwhile, in my head, the ticker tape was back: “You’re FAT, You’re DISGUSTING, How could you DO THIS TO YOURSELF, how dare you waste everyone’s time and energy with your fat, worthless body; these doctors should be caring for people WHO ACTUALLY DESERVE IT.”

But then he left, and, fortunately for me, a new, kind, thoughtful doctor took his place and I was back to receiving the superior care the hospital stay had so far provided.

I was, and am, incredibly lucky. My family and friends rallied; they were amazing. My sister arrived at the hospital the morning after I was admitted, pulled out her work computer and proceeded to set up shop, never leaving my side, as though it were perfectly natural that her office was now her little sister’s ICU room. My future brother in law arrived at the hospital within hours, and I will never forget how earnest and concerned he looked when he asked me how I was doing.  Let’s be clear: he signed on to my sister, not my sister’s sister (me); so his immediate support was not something I felt the right to expect, but it was something I was honored to receive. (Welcome to the family, Chris!) My mother was the same, sleeping sitting up in chairs until the rest of us finally convinced her to go to my sister’s apartment and sleep horizontally for the first time in many hours. My boyfriend arrived with my phone charger (!!) and a pair of clean underwear and got into the hospital bed with me, resting his head against my shoulder, as though, again, it were perfectly normal to have found me here, covered in wires and hooked up to machines. My friends – those who I could bring myself to tell – texted and called, or, in one case, showed up without pronouncement or fanfare, with no intention of leaving until I did. (And here was the funny thing: it was so critical for me, in those first moments after diagnosis, to tell my family, but once I knew it wasn’t definitively Type 1 or Type 2, I froze on telling anyone else. It was mostly, I think, the idea of having to share that it was one Type, and then have to take it back – “just kidding! I do have the happens-from-being-obese kind!” The threat of magnified shame was too great.)

And, the hardest memory to recount: my dad. Who respected my insane wish that he not come to the hospital. I don’t know why I was so weird with my dad in those first days after diagnosis. It was his judgment, I think (judgment he never once made), that I feared most. Disappointing him was the biggest threat of all. And I couldn’t stop thinking about his face when he’d walked into the kitchen on Wednesday night to find me with calloused fingers, surrounded by bloody glucose test strips.

It’s very hard to sleep in the ICU. There’s lots of sounds, always, and if you’re in DKA you can count on getting woken up at least once every 90 minutes to have your blood sugar tested, or to take a magnesium pill, or to get another drip put in. Plus, you’re probably already waking up every 90 minutes with the incredible urge to pee. There have been a bunch of studies about how exhausting being hospitalized is; how you tend to leave the hospital pretty sleep deprived and ready for actual rest.

Which is why it’s even more significant that, the first morning I woke up in the ICU, I felt wonderful. I had been on an insulin drip for at least 4 or 5 hours – the most immediate and direct and intense way to get insulin into the system – and my blood sugar was finally, finally coming down. By 8 am, when the morning nurse tested me, I was sitting at a perfectly acceptable 108 mg/dL. Probably, looking back, for the first time in weeks.

And oh my god, did it feel amazing.

It’s fascinating how your body can get used to things. I had walked into the ER pretty damn convinced that I was actually “just fine”; that I was getting along A-OK, but the truth was, I’d been in really, really bad shape. And that became exceptionally clear when I finally did get my blood sugar under control that next day. It was like living for six weeks with cotton balls stuffed down your throat, around your brain, in your ears, eyes, up your nose, in your joints. Everything fuzzier, murkier, harder to trudge through. And then one day someone comes up to you and is like “whoops! Those shouldn’t be there!” and takes them all out, and you’re like “oh…ok. This is what using my eyes and ears and brain and legs and heart and stomach is actually supposed to feel like.” It was clarity, crispness, sudden and sharp and delightful. It was exceptional. Not to say that I was out of the woods, cured, or “better”. Once they took me off the insulin drip my blood sugar stubbornly crept back up to the high 200s (more on that later) and a lot of the fuzziness, dizziness, exhaustion, “off-ness” came back. Plus, my system, from a metabolic standpoint, certainly had a lot of catching up to do (those horse-sized magnesium pills I had to take over the next few days were proof of that.)

My childish understanding of hospital visits had always seen them as expressly self-contained. Bad thing happens, you go to the hospital, bad thing goes away, you go home. It had never occurred to me that a hospital visit might mark the beginning of something; that you could enter a hospital pre-diagnosis, be diagnosed while you were there, and thus, actually, on paper at least, leave the hospital “sicker” than you came in.  I wish, I so wish, that this was the end of my story. But waking up that morning in the ICU, and feeling fully awake and fully alive in a way that I hadn’t in over a month, was enough to silence the last of my denial. It was time to admit it: Type 1 or Type 2, I had mother freaking diabetes.

My story wasn’t over. It was just getting started.

4 thoughts on “What. Just. Happened: TYPE WHAT NOW? (Part 4)

  1. JLB, I’ve been reading every single post of yours and am just completely pulled into your world. I’ve never stopped to think about the kinds of thoughts one might have with a new diagnosis of a chronic disease, and your writing has really impacted me in terms of the type of doctor I’d want to be in the future. Thank you SO much for sharing- I’ll definitely keep reading!!
    P.S- Dr. Smug….what a JERK. And, sadly, there are so many doctors like him out there. UGH.


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