If I had to organize the events of the recent past into sequences, Sequence 1 ended with my first trip to the endocrinologist. I went from symptoms to diagnosis – “This is definitely Type 1 diabetes” (and, you know, maybe type 2, too).
Now I had to learn how to live with the disease.
In recognition of this shift in “sequence”, I’ll re-title the next series of posts “Living with Diabetes”. If Sequence 1 (What. Just. Happened) was like a rollercoaster ride – extreme and intense and nauseating – Sequence 2 will be more like what happens after you get off the rollercoaster. (If, you know, you happened to get diabetes while on said rollercoaster.)
I learned. For days, then weeks, than months, I learned. I’m still learning. When it comes to diabetes, it seems that the more you learn, the more you have to learn. See, not only is it a pretty fucking complicated disease with many, many aspects of it still mysterious and unknown, it also effects each person differently. A nurse who I saw early on put it best when she told me “Your body is now a walking science experiment.” You just have to watch, observe, and conclude. Unfortunately, as soon as I started to “conclude” something about how diabetes affected my body based on what I watched and learned one day, it would be directly contradicted by what occurred the next day.
Would you be surprised if I told you my first two months with diabetes sucked?
My sugar was a disaster, and it felt miserable. Plus, I didn’t know what to eat. I didn’t know how to work out. I didn’t know how to resume my life as though nothing had changed – because everything had changed. I didn’t know how to treat the various symptoms of high and low blood sugar. And most importantly, I guess, was that I didn’t know what to feel.
My doctors’ practice has this online portal where you can login and access your medical records. One of the tabs is “Current Health Issues”. After my appointment with Dr. M, she must have made some notation in the system that caused “Type 1 Diabetes” to show up right next to “Obesity.” I noticed it casually when I was looking up my hospital test results in the week after I was discharged, and the words hit like a bullet to the chest. Like that thing when you’re walking next to a mirror but don’t realize it, and your reflection completely takes you by surprise? You’re like “who’s BODY is that?” and then you realize it’s your own, and you’re left with all the unadulterated thoughts you would have about yourself if you were being 100% objective? In my case, that used to happen to me where I’d half-notice-not-notice myself in a store window or random mirror and then realize it was me and then be stuck thinking “Fuck. How fat.”
Seeing “Type 1 Diabetes” was just as jarring. A lot of “shit” and a lot of “what”? Because you know what? Not only did I not believe it, a lot of fucking other people didn’t believe it. People who I love very much, who meant well, who probably were just in shock that Type 1 diabetes could have struck a 26 (now 27) year old, but who nonetheless caused me a fuckton of additional stress and confusion in their denial and skepticism.
“Are they sure it’s Type 1?” became the refrain of my first two months with diabetes. Because you guys: I was fat. It didn’t matter what the tests said, what my blood was saying, what my goddamn doctor had said, I was fat. It was ridiculous – I had spent the week after being told I had diabetes absolutely hysterical wondering what Type I was, and now I had the answer I had been so desperate for!
No one! (myself included)
To those around me, Type 1 diabetes was inconceivable – unlikely for so many reasons, starting with my age and ending with my weight. To me, Type 1 diabetes was unbelievable because, essentially, it bypassed my weight as “cause”, striking, instead, senselessly. Type 2 diabetes would have been punishment for a life lived disgustingly. As an overweight person with deep body image and shame issues, punishment made sense. I was familiar with it – it was a language I operated in, a system of cause and effect I knew well.
You are fat. You are gross.
You are worthless.
You don’t deserve the life you were given.
If you insist on living the life you were given in this disgusting body, you will pay for it by feeling the extent of your disgustingness all day, every day. You’d better hate yourself because there is so little about you that’s worth loving.
As insane as I know it is to type this, I felt like I didn’t deserve Type 1 Diabetes. (DEAR PAST JESSIE: WHAT WERE YOU THINKING??? — LOVE, CURRENT JESSIE). When other doctors, family members, whoever would break out that constant refrain (“Are they sure it’s Type 1?”) I would flush with shame, lower my head, mumble something about how, well, you know, my endocrinologist insisted. If they pushed the issue, I’d usually wind up agreeing that, yeah, actually, I was skeptical too, it really did seem unlikely. It was “probably” type 2. In fact, she had suggested it could be Type 2, too! So, yeah! Type 2! You’re right, random stranger; and my experienced, trained doctor is probably wrong. Thanks for insisting.
It still happens. Just a few minutes before I sat down to write this, I got off the phone with yet another insurance agent over yet another insurance issue who, when taking down all “my details” paused when I told her I’d had Type 1 Diabetes for 7 months.
“Are they sure it’s Type 1?” she asked.
(The best is how EVERYONE who asks me this seems to think they are the first person suggesting it. Like, yeah, insurance lady, I’ve seen, probably, a dozen different doctors since I got this diagnosis and had more blood drawn than there IS IN MY BODY, and talked to like 10,000 specialists but WHAT A GOOD POINT! HADN’T CONSIDERED THAT BEFORE. ARE THEY SURE IT’S TYPE 1? BETTER CALL MY MOTHER FUCKING DIABETES DOCTOR WITH THAT REVELATION. CRAZY THAT SHE DIDN’T THINK OF THAT.)
(Rage issues, Jessie?)
Now, of course, there was still the very upsetting concept that I might also have Type 2 diabetes “symptoms”, and, essentially, be “Type Both”. But regardless of how that worked out, my endocrinologist struggled to make me understand that I had type 1 diabetes. And that was not something to be ashamed or proud of. It just was something.
That was the hardest, I think. Disease without cause. In those first two months I had so clearly dichotomized Type 1 and Type 2 Diabetes. And since Type 2 diabetes had become the shamed disease, Type 1 automatically took on, in the most fucked up way possible, this position of honor. One I, in my insanity, felt I didn’t deserve. I think, ultimately, it was because it was too damn hard to consider that it was just bad fucking luck – it wasn’t “awarded” to me or meted out as punishment. Sometimes, things just happen.
And I guess that’s the hardest part of life, in general. Meaninglessness. Randomness. Chaos.
Sometimes, things just happen.
I didn’t understand it then, but I see now that I had another clear sign pointing me towards Type 1: the speed with which my blood sugar rose (and, eventually, crashed.)
As I mentioned in an earlier post, diabetes is such a hard disease to manage because there are consequences of your blood sugar going too high or too low. You have to work hard to keep it in within a very specific range. Now, in the first two months, “low” wasn’t especially an issue for me. I know now what that rodeo is like, but in a way, I was lucky, because since I had those “could-be-glucose-toxicity-could-be-insulin-resistance” issues, I really avoided any lows right off the bat. But before I get into that deeper, let’s take another gamebreak, shall we?
DIABETES 105: HIGHS AND LOWS
So, we’ve established that:
Food (carbs) make your blood sugar go up.
Insulin makes it go down.
That’s the elementary school version. Let’s go to high school:
Food does, indeed, make your blood sugar go up. So do some other things. Like: stress – specifically, cortisol and adrenaline, sickness (infections, fevers, other more malignant things), pregnancy (hey ladies: if you’re a diabetic GET USED to a doctor asking if you could be pregnant EVERY TIME your sugars start running high), and hormones (hey ladies: if you’re a diabetic GET USED to your sugar being a fucking nightmare during PMS/your period). Other things that can make your sugar go up: disruptions to your sleep or eating patterns, time changes, time of day, spoiled insulin, needle or pen leakage, or injecting into a bad spot. Or, you know, just unknown causes! So…a bit more than food.
Insulin does, indeed, make your blood sugar go down (when you’ve injected it properly – see above). So, too, do some other things – like exercise, or movement/activity generally, certain medications, the interactions of certain foods (high fat or high protein, specifically) with insulin, or alcohol.
In a non-diabetic, your pancreas is such an efficient little worker that it produces insulin in perfect synchronicity with the foods that you eat AND ALL THE OTHER STUFF THAT GOES ON TO MAKE BLOOD SUGAR MOVE. You don’t need to regulate a thing yourself – your pancreas does it all for you. But what, you ask, about people who fast? Or exercise and fast? Or drink alcohol and exercise and fast? If a non-diabetic did any of these “low-blood sugar” inducing things, couldn’t their blood sugar start to fall0? Wouldn’t they be susceptible to these mysterious “lows” I’ve teased?
Well, yes and no. People without diabetes often complain of “low” blood sugar, and it’s possible for a non diabetic to get low(ish) blood sugar. As I mentioned a few posts ago, normal is considered 70-100. Could a non-diabetic go below 70? Sure – maybe into the 60s. Maybe even into the 50s, but it’s unlikely. Interesting fact: the irritability and sluggishness you attribute to “low blood sugar” is, most likely, less because your blood sugar is creeping below 70 and more because it moved quickly from, say, 127 (after you ate) to, say, 78. It’s probably the “crash” that you’re feeling rather than an especially “low” number – and, no, it doesn’t feel great.
However, the non-diabetic body has a very intricate system to protect you from going too low. I’ve talked about the beta cells in the pancreas – those are the ones that make insulin. Your pancreas also has alpha cells – these cells make a hormone called glucagon, which, when released into the bloodstream, basically does the opposite of insulin. It raises your blood sugar. So, not only does your body have the ability to lower its blood sugar, it has the ability to raise it. Pretty cool, huh?
Of course, in Type 1 diabetics, glucagon function is heavily impaired. So we can’t raise our blood sugars like you can. Of course.
For the extra credit-seekers among you, glucagon works in the following way: it signals the part of your body that stores starch to release it. Your body is, literally, keeping a reserve of glucose at the ready in case it needs to raise your blood sugar. It keeps it in your liver, in the form of glycogen. (Glycogen: not to be confused with glucagon).
So, if you decide not to eat for the day, your body probably won’t be happy about it, but it will, grumblingly, tell your liver to release some glycogen so your blood sugar doesn’t drop to dangerous levels.
What are “dangerous levels”? Well, when I first got introduced to diabetes, I was told to fear all numbers below 70. I must admit that, 7 months in, I am less horrified by the 60s. In fact, ‘medicine’ doesn’t really get worried about hypoglycemia (low blood sugar) until you dip below 55. That would be nearly impossible for a non-diabetic, and that’s when diabetics really have to take action.
High blood sugar and low blood sugar are very different beasts, primarily for reasons of urgency. As you might imagine, high blood sugar, if not accompanied by ketones (that acid in the blood signifying DKA) is not immediately urgent. Hence why I was discharged from the hospital rocking a blood sugar in the 200s. However, long term (say, if you have diabetes for weeks and weeks without knowing it), it can cause horrible things like DKA. Really long term, like, we’re talking years, decades of sugars consistently hanging out in the 200s, 300s, 400s, and beyond, and then you start to get all the terrifying diabetes side effects you hear horror stories about: neuropathy (nerve damage) which leads to amputations, blindness, kidney failure… stuff that, frankly, even to write about makes me sick to my stomach and panicked.
Does reading in the 200s once mean that is going to happen? No.
Does reading in the 200s a hundred times mean that is going to happen? No.
But consistently reading in the 200s, thousands of times, over years and years, drastically increases the chances those terrible things will happen.
So, highs are bad. But they are not medical emergencies (unless they’re accompanied by ketones (DKA!), or you’re really sick with something else, etc etc.) They are often hard to feel, too – it requires getting pretty high (like before I was hospitalized) to start feeling any symptoms – nausea, thirst, difficulty concentrating, exhaustion, etc.
Lows, on the other hand, are also bad, but, unlike highs, they are immediate medical emergencies. The problem with lows is that if you don’t treat them fast enough, you can pass out. And that leads to something that, grimly, is called “diabetic coma”. In extreme, extreme cases, “diabetic coma” becomes death.
Oh, and lows feel like shit – shaking, blurred vision, rapid heartbeat, mood changes (legit), headache, fatigue, and, generally, the overwhelming urge to eat LITERALLY EVERYTHING THAT EXISTS.
Have you ever had a panic attack? And I don’t mean that thing where you declare you’re having a panic attack as a way of saying you’re nervous; I mean a legitimate, physiological panic attack – where your heart rate speeds up and then starts to palpitate and you can’tcan’tcan’tcan’t catch your breath and you start to hyperventilate and you’re shaking? Anyway, lows – like, really bad lows, feel a lot like panic attacks. Plus a few more symptoms. Like, sometimes also they make your hands and feet very, very cold.
Oh, and you can’t think. They sort of fog up the brain and you find yourself struggling to remember things, finish sentences. If you’ve ever seen Steel Magnolias (watched it for the first time after I was diagnosed, not good call NOT NOT NOT GOOD CALL)… that bit where Julia Roberts gets all “mad-dog” in the hair salon? Not complete bullshit. Another observed side effect of lows is “personality changes”. Legitimately.
When I first read that, I was like “what the fuuuuuuck?” And while I have never starting rolling around on the floor mumbling or like, joined a cult during a low, I have occasionally been kind of an asshole when low and wondered afterwords if it maybe that wasn’t entirely my fault. (Retroactive sorry, Stef).
So, yeah, highs are bad, but, to a certain degree, lows are worse. So, let’s all say it together: “Drink the juice, Shelby!”
Because lows pose such a more immediate threat, most doctors tend to be pretty conservative with diabetes treatment plans – when in doubt, they want you to err on the side of high rather than low. A high is bad, but not the end of the world. A low could, literally, be the end of the world.
OK, so we’re back from our gamebreak: as I mentioned, I didn’t really have any lows right off the bat. My sugar was high. Super high. So instead, I spent my first two months with diabetes worrying about blindness and amputations and kidney failure. (And weight gain, my god, weight gain.)
And worry I did. I kept having to take more insulin, more, and more, and when my sugar finally did come down, it would shoot back up again, seemingly anytime I ate anything. That’s what I was getting at, before, when I mentioned that the “speed” of my blood sugar shifts indicated Type 1 much more than Type 2.
Type 2s tend to have blood sugar that moves more slowly – as we know, they still make their own insulin, so they have a buffer over huge spikes or crashes. In my case, I wasn’t really “crashing”, but man oh man was I spiking. Testing my blood sugar, as I was at this time, 15-25 times a day, I would observe my numbers slowly, slowly settling after an injection, and then I would eat a piece of toast, and jump from 180 to 250 in twenty minutes.
That kind of jump is a Type 1 jump.
However, my utter “resistance” to the insulin I was injecting (I had to take so much insulin!) seemed to suggest that my doctors’ fear of “Type 2 symptoms” was on the mark. Perhaps I did, indeed, have “both” types – one that I was randomly cursed with, and one that I had cursed myself with because of my fatness.
It seemed hopeless. I remember I would wake up in the morning wondering if this was the day (it wasn’t), if today my numbers would finally settle (they wouldn’t), and despairing when this day was as hard as the day before. Dutifully, I emailed a daily log of my numbers to my endocrinologist, and she responded every day with tweaks to my sliding scale (I hadn’t yet moved on to “advanced diabetes” – carb counting and correction), but nothing seemed to really be working.
Until a week later, when I went back to the endocrinologist and again, despite EXTREME diet restriction, weighed in a four pounds higher, at a frightening 191. The 200s, which I had foolishly thought were in my rearview mirror, loomed.
Truly, it seemed like it couldn’t get any worse.
And then, of course, it did.
Because then my hair started falling out.