And so it begins...

I knew this had happened, but find it gratifying to have received a personally addressed email attachment. Oh, I so hope this goes well...

I couldn't, it's the way I was raised -- call it etiquette.

Bernard posted about the Diabetes Etiquette Card from the Behavioral Diabetes Institute. My favorite point on the card is #2:

DO realize and appreciate that diabetes is hard work. Diabetes management is a full-time job that I didn't apply for, didn't want and can't quit. It involves thinking about what, when and how much I eat, while also factoring in exercise, medication, stress, blood sugar monitoring, and so much more -- each and every day.

Coming in a close second is #1:

DON'T offer unsolicited advice about my eating or other aspects of diabetes. You may mean well, but giving advice about someone's personal habits, especially when it is not requested, isn't very nice. Besides, many of the popularly held beliefs about diabetes ("you should just stop eating sugar") are out of date or just plain wrong.

Excuse me, I think I have some mass mailings to make.

Clear as a heavy lead curtain

Conversations About Diabetes, 1985 - 2008

I.
Family friend: Would you like some Sprite?
Me, age 10: No, thank you. That's got sugar in it.
Family friend: Oh. Well, how about just a little?
Me, age 10: No, thank you. I can't have any.
Family friend: How about if I mix it with water?
Me, age 10, disgusted, to mother, hours after the above exchange: I didn't know that WATER HAS THE POWER TO TURN REGULAR SODA INTO DIET SODA!

II.
Me, age 20, to nurse in hospital, following appendectomy: I need more insulin.
Nurse: The orders say you're only supposed to get insulin every four hours.
Me: I understand, but because I've had this glucose IV drip, my blood sugar is now higher than 300. I need more insulin right away.
Nurse: [Ignores me, walks away]
Me, when nurse returns: When are you bringing me the insulin?
Nurse: The doctor said to only give you insulin every four hours.
Me: Right. But my sugar is now 3 to 4 times higher than it should be, which is dangerous and very bad for me. The way to make that stop is to give me more insulin, regardless of what the order says. This is what I do: I take extra insulin when my blood sugar is higher than it should be.
Nurse, in surprise: Oh! You do this at home, too?

III.
More people than I can count, upon observing me checking my blood sugar: Ohhh, are you shooting up now?

[Inner Monologue: Yes, and if you hang around, later I'll teach you all the finer points of freebasing.]

Me: No, I am checking to see how much sugar is in my bloodstream. That tiny thing I pricked my finger with is not a syringe, and does not put anything into my bloodstream. It's just for getting a blood sample.

IV.
More people than I can count, upon observing me checking my blood sugar: Eeeeeeeeew! I don't know how you do that. I could never do that. Ew!

[Inner monologue: Well, if your choices were do this or die, you could probably do it.]

Me, on a good day: Well, if your choices were do this or die, you could probably do it.

Me, feeling murderous: [Tight smile]

V.
More people than I can count, upon learning I am diabetic: So, you ate too much sugar, huh?*

[Inner monologue: Yes. I ate too much sugar. So much so, that at the age of ten, my body had finally had enough, and my pancreas BROKE. It's all my own fault.]

Me: No... no one knows what causes type I diabetes.

*Particularly ironic considering that my all-natural-granola parents didn't allow sugar in the house when we were kids.

VI.
Me, to the company that makes my insulin pump supplies: I have not received any supplies in two months now. I realized I had an outstanding bill but that was paid about two months ago.

Customer service rep: Hm... there was a hold on your account...

Me: Yes.

Customer service rep: Did that payment you made just clear?

Me: No, it was paid about two months ago.

Customer service rep: Oh, I see that your orders were canceled just recently.

Me: Why were they canceled?

Customer service rep: Because there was a hold on your account.

Me: Yes, but that was two months ago.

Customer service rep: Well, on our end we didn't know, and Billing canceled it, and --

Me: It's all on your end, you're all part of the same company. And canceled or no, I still need to live, right?

Customer service rep: Well, yes.

I keep a poker face so well

Through NaBloPoMo, I've found a group of people who have blogs and also have diabetes. Never one to join any kind of group, let alone one in which the criteria is having a pancreas that decided to drop out, I was a little leery. But after nearly 22 years of going it mostly alone, I find myself craving someone to talk to about what it's like -- someone who knows what it's like. There is no shortage of people I can talk to about it who care, but I feel bad burdening them with it; it's overwhelming and quite frankly boring to me - I hate thrusting it upon someone who doesn't have to think about it. And, too, I hate to feel as though I'm pitied.

So yes, I joined, and there are some very lovely, encouraging, intelligent people in the group. Some of them have been actively participating for years in The Fight Against Type I Diabetes; others simply need someone to talk to. Bernard is the ringleader; he started the group and also started a Flickr group called Diabetes 365: every day for a year, its members post a photo of what it looks like to have diabetes.

I am tentative and afraid, and unsure as to why. My feelings about having this disease are so strong, and generally remain buried (save this post). I don't understand how other people who live with it can remain hopeful that a cure will be found. I don't see how they can talk about it, every day, without falling into despair. It frightens me, this openness.

But I'm trying. I suspect this will be a good, and an important, thing to do.

But I won't be weeping long

A normal blood sugar, for your average type I diabetic [no caps because it's a disease, unworthy of the recognition], ranges between 75 and 140, roughly, or at least it used to. They changed the rules, you see, a couple of years back, after a very famous study in which it was found that -- and I hope you're sitting down! -- over time, keeping a tighter reign on blood sugars is like almost a promise that one will be able to keep the complications at bay. (Forgive me if I do not gasp in amazement, the way various members of the medical community have been doing since the results of the study were published. It seems like common sense, but perhaps that's just me.).

Anyway, I suppose now the ideal numbers are more like 70-120-ish. In any case, rest assured that a blood sugar of 549 is high. It happens, sometimes for reasons completely out of my control. Today, for instance, it happened. And here's the thing: one of the biggest symptoms, for me, is a general sort of confusion, lack of focus and stupidity. So as I walked over to HQ to see a client this morning, I was very slowly thinking Why do I feel so strange? It's like my arms and legs don't work properly. And that dull headache should have gone away after the coffee [oops, forgot to mention I am back on the caffeine, there]. And I am so thirsty. Huh. After about thirty minutes it dawned on me that perhaps something was awry, endocrinologically speaking, and sure enough, it was. So. I took more insulin and lay down for a bit -- oops, that turned into a 40-minute nap, and no one noticed I was gone, which was quite nice. The pain in my stomach lessened and I was pleased, after checking the blood sugar a second time, that it was dropping.

And then about an hour later, it was back up, actually even higher than before. Why? I don't know. Maybe the very small plastic tubing under my skin was bent and not delivering the insulin properly. Maybe it was hormonal. Maybe it was something else, nothing at all. It's happened before. I took more insulin and tried to push through, but I couldn't think anymore, my head and stomach hurt, the muscles in my arms and legs hurt, I was sleepy and confused. And you know, most of the time it's not a big deal, I push through, I figure out how to arrange my schedule and my tasks to maximize what little brain power I have during these times. Today, for whatever reason, I just couldn't. I left work and went to my mom's house and slept. And cried a little, in the car, on the way there.

Generally I don't dwell on it too much; there's no point. There's nothing I can do about it, after all. It's not cancer or AIDS or a colostomy bag or any number of horrible things. I'm able to function, at least on the outside, in a mostly-normal fashion. It's been twenty-two years, nearly; I know what to do. But every now and then it brings me to my knees. It accumulates and I crumble for a couple of days. There's a constant algorithm running in the back of my mind -- perhaps less algorithm than chorus: how do you feel? is your sugar low or are you just tired? is your sugar high or are you just tired? is it climbing or dropping? do you have something in case your sugar drops? did you remember to bring extra supplies in case your infusion set fails? is that an itch where the tubing is inserted in your abdomen? usually once it starts itching it means the tubing has bent; is your blood sugar high now? and on, and on. Time and space and energy. I am kept alive by tubing and a triple-A battery, by a computer program and a foul-smelling hormone produced in a lab. I'm tethered to a small device at all times, save for when I'm in the shower. Even then I'm left with a plastic piece taped to my skin, which I have to be careful not to jostle too much, in the interest of not causing the subcutaneous part to bend. Sub-human. Robo-human. Freakish.

And, oh, I know, it could be so much worse. I know! But every now and then, maybe a couple of times a year, I just can't stand it anymore and lose interest in keeping at bay an intense hatred for these things that I'm stuck with. The things I'm physically chained to, and the thing that created the need for them. Sometimes it's more than I can handle.

The aftermath of very high blood sugar: exhaustion, depression, and a heightened likelihood of both low and high blood sugars (the diabetes rollercoaster, as I fondly derisively refer to it). Tomorrow I'll still be tired, I'll be behind on my work and I will not have an assignment to turn in at school on Tuesday because I was too tired to go to class today. Everyone will ask if I'm feeling better, and they will have questions about why it happened. Some will have theories. It will be uncomfortable. It will not be a new experience. By Saturday I'll be back to normal. In the meantime, here I am.

It's not right, it's not good

Oh man, what a bust. Last night I had blood sugar woes for hours on end. This happens from time to time, and modern medicine is seemingly unable to explain it. It's as if, all on its own, my blood sugar decides "I'm just going to hang out here at this level, three to five times higher than I should be!" and then, the freaky part -- no matter how much insulin I throw at it, it will not be budged. At some point, usually 3 to 5 hours after it has begun, it is over. Just as mysteriously. So that was going on last night, and at 10:30 I thought I'd just lay down for a bit until the worst of it ("it" being the hot, sausage-casing-esque feeling under my skin; the wooziness; the inability to see straight) had passed. I woke up at 12:20 am! Thinking that perhaps it might still count for an entry on Tuesday, since I had not yet officially gone to bed, I hit up Blogger immediately!! But the stupid Time Warner/Comcast switchover is still wreaking havoc on the internet over here, and we had no connection.

Ah, well. It could have been worse, I suppose -- I could have then gone to bed and woken up the next morning to find my son, his socks and his bedclothes covered in poo.

Oh, hang on. I DID!!

The End.

Love,
Emma