When you have a chronic illness like mine and you go to the doctor – any kind of doctor, really – you inevitably get The Lecture.
I am a type 1 diabetic. This is an immune disorder that hit me 5 years ago when I was 26. Basically, it’s triggered by some kind of event that convinces your white blood cells that the cells in your body that produce insulin are now Evil and must be eaten. Over time, your body ends up eating all of them, so you no longer process sugar anymore. Eventually, your body starves to death, because the blood cells no longer receive sugar (food). Most people who get it are kids. It’s rare to get it after your early 20’s, but it happens. And, importantly it is NOT the one generally linked to high carb diets and lack of exercise – you know, the one that’s ALWAYS in the news and so everybody thinks they know about (people are just as woefully ignorant about that one, yet I still find myself enraged when they mistake me for a type 2 and assume I will just “get better” someday)
In fact, I make no insulin. Not a lick of it. I have none. Give me 24 hours without a shot of synthetic insulin, and I’ll die. And unless somebody figures out how to reprogram my white blood cells to not attack my insulin-producing cells, I will never get better. No amount of diet or exercise will ever “cure” me.
Them’s are the bald facts. It sucks. It’s unfortunate.
What this means is that no matter how many miles I run, pounds I lose, or how much medication I take, I still won’t produce any insulin. I will still not get any better.
Got that? OK?
It is also a chronic condition. That means that it will eventually wear me down and kill me, because even if you’re living on eggs and cheese, your blood sugar is never going to be 100% “normal”. Oh, you can get it pretty close if you test about 10 times a day and never, ever, ever deviate from an eggs-and-vegetables diet, but any amount of strong exertion will send you low, and one mistimed or incorrect dosage of insulin could send you low or allow you to get too high, and when your blood sugar gets too high, it slowly starves and damages all your nerves and organs.
A normal person’s blood sugar is about 80. Your body’s always going to regulate your system back to 80, unless there’s something hosed up. When I was wheeled into the hospital five years ago, passed out and vomiting, hallucinating about little black dogs and how I should be doing my taxes in May, my blood sugar was up over 800. For nearly a year beforehand, nobody knew what was wrong with me. I mean, after all, I was an otherwise healthy young adult who ate right and exercised! Surely all the weight loss and exhaustion and infections and blurred vision and urinating and thirst and extreme hunger were just due to stress! (my non-diagnosis was just the first step in my extreme distrust of doctors)
Anyway, after 20-30 years or so of irregular sugar numbers, your body just starts to fail.
But what’s often most aggravating about chronic illness (really, any chronic illness, let’s be honest) is that nobody fucking understands how it works. And especially not how it works for me.
BUT THEY ALL WANT TO TELL ME HOW IT WORKS ANYWAY.
I am so often confused with a type 2 – and, worse, an uneducated type 2 – that I try very hard never to use the word “diabetes.” It inevitably leads to lectures. As if I don’t know that vacillating sugar numbers are bad for me. Like I don’t know my feet could get chopped off or I could go blind due to overly high sugar numbers. Like I don’t stick to a stupidly low carb regime and exercise routine to mitigate these effects as best I can.
When my eye doctor asked me yesterday what my lowest low and highest highs were ever (no, she is not a new doctor. I have been there 3 times. And I always get THE LECTURE), I told her I’d been anywhere from 22 (after miscalculating the carbs in a croissant in Spain – I’m more insulin resistant in the morning [like most people], but my internal clock was still on evening, so when I dosed myself the way I would in the a.m. for this carb count, it was too much. I saw black spots and nearly passed out) to 435 (that was an unfortunate night in which my 2 a.m. sugar check alarm didn’t go off, so I missed a correction, which can be dangerous after eating pizza – this is one food I allow myself very rarely).
Are these numbers generally what I’m at ALL THE TIME? Of course not. My lowest lows are usually in the 50s and my highest highs in the 230s. On average, I’m clocking in at about 130. And that’s with regular (planned) exercise, low carb living 6 days a week, and testing my blood sugar 5-7 times a day.
But my eye doctor was shocked (shocked!) that my sugars vacillated between lows and highs like that (ever!), and decided to give me the usual lecture about how eventually I would go blind and have my feet chopped off if I didn’t control my blood sugar, and even though my eyes looked fine, you know, diabetes is a chronic illness and EVENTUALLY YOU WILL DIE HORRIBLY.
Oh, she said it much more nicely than that, with a very chipper smile on her face. And I just nodded my head sagely like it was the first I’d ever head of such amazing things and she knew what the fuck she was talking about. Then I proceeded to lie to her about my numbers the rest of the session.
I wanted to see her work out her diet and exercise and insulin calculations for two full days, let alone five full years, before she started telling me how crazy it was to have a 242 number at 2 a.m. after eating nothing but green beans, chicken, and sugar-free whipped cream mousse for dinner (hint: all the fat in the dairy makes it slow to process the carbs both in the dairy and the rest of your meal. So you may go to bed with a number of 90 and four hours later, ta-da! You’re at 240. The same thing happens with pizza, which means that if you want to eat a lot of it, you have to test your blood sugar and dose yourself with insulin every 2-3 hours or so for about 10 hours if you don’t want to hit that 430 number. Yeah, eating is tons of fun!). Yes, I have learned everything I have about how I react to carbs, certain foods, different types of exercise, and how the time of day affects my insulin doses through very hard, frustrating, scream-worthy, world-raging trial and error.
BUT OBVIOUSLY EVERYONE ELSE IN THE UNIVERSE KNOWS MORE THAN I DO ABOUT HOW TO MANGE MY ILLNESS.
I had surgery earlier this year, and the surgeon insisted I call my endocrinologist for “special instructions” about how to manage my blood sugar before surgury. She gave me strict instructions not to take ANY Novolog insulin that morning, and to take half my dose of Lantus (my 24 hour basal insulin). I knew she was full of shit. When I get up in the morning and start moving around, my blood sugar can jump anywhere from 60-80 points in an hour. It just… does. Which is why I generally take a half dose of Novolog at 6:30 a.m. on weekends to correct for this spike (even if I’m not going to eat until 9am. On weekdays, I just dose immediately upon waking for breakfast, planning for a breakfast and a.m. workout routine which is always exactly enough insulin to cover 10 carbs). But, trying to be a good little patient, I followed her instructions, and sure enough, come surgery time, my blood sugar was at 160 and then 180, and they were watching it intently, because if it gets above 250 THEY DO NOT OPERATE. So I was in a holding pattern for another 30 minutes to ensure that my sugar was holding steady and not continuing to go up.
Needless to say, that’s the last time I contact my doctor before a surgery. I already knew exactly how my body would react.
But anyway, ignorance aside(I know! You’d think that was the WORST PART!), here’s what really fucking pisses me off about going to the doctor (and when you have a chronic illness like mine, you’re expected to go to the doctor at least 5-6 times a year – 4 times for your endocrinologist, once for the eye doctor, and once for the podiatrist. This is so you can get MAXIMUM lecture time). What really pisses me off is people telling me how horribly I’m going to die. I’m tired of hearing about blindness, and kidney failure, and congestive heart failure and cataracts, and nerve damage, and amputation, and all the fifty bazillion things that are MOST ASSUREDLY GOING TO HAPPEN TO ME EVENTUALLY.
It’s like, you know what? What the fucking point is there going to the doctor if you’re just going to DIE HORRIBLY ANYWAY? And I swear to fucking hell, if I have to have one more useless appointment where it’s like, “Well, your A1c is fine, but it could always be better! You know, so you can put off having your feet amputated another year or two!” or “Well, there’s no sign of nerve damage… yet!” I think I will fucking punch something.
What the fuck is the point of this? Why am I spending my money to hear all about how I’m “not dead horribly… yet!” And “Yep, still got a chronic illness!”
I am never going to get any better. It’s never going to go away. I’m never going to be able to “get off” my drugs if I want to survive to tell of it.
It will not get better.
So why the fuck am I paying people to tell me how horribly I’m going to die so they can illustrate that they once read an article about how much it sucks to be a diabetic?
You know, if I was a type 2, there would at least be SOME KIND OF CHANCE that I could possibly wean myself off my meds after aggressive lifestyle changes as prescribed by my doctor, but as a type 1, THINGS ARE JUST GOING TO GET WORSE. And yes, thank you, doctor, I KNOW THEY ARE JUST GOING TO GET WORSE NO MATTER WHAT I DO AND THAT IMPROVING MY SUGAR NUMBERS IS SIMPLY PUTTING OFF THE INEVITABLE. It’s just a matter of how fast they get worse.
I am so fucking sick of paying people to tell me what I already know.
Sometimes I feel like they are giving me these lectures every time because, to them, it justifies me coming in. I mean, what else are we going to talk about? “Yep, things look fine!” is just not going to cut it. They must prove their usefulness. So it becomes, “Yep, things look just fine… but EVENTUALLY HERE ARE ALL THE HORRIBLE THINGS THAT COULD HAPPEN.”
Thank you, doctor. I had no idea!
Afterall, I am just an ignorant little bauble head. I never even read a book! Let alone wrote one!
It was really, really hard to stop listening to what doctors told me. You see somebody in a white coat and you assume they know everything. It’s not true. In fact, 90% of them know less than you do about your own illness. There are some good ones, yes, and to be fair my current endocrinologist always tries to be helpful, and has been the best I’ve had for actual lifestyle suggestions (like switching from vials and syringes to pens – this was nice), but for the most part, people are just woefully ignorant, all of them operating on the same knee-jerk assumptions or six-year-old article they read about how you should eat a balanced diet full of carbs if you want to control your blood sugar.
At any rate, that’s why I hate going to the doctor.