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  • Writer's pictureErin Spineto

Never, Never Land

I think I have done such a good job of convincing myself that I can do anything with diabetes and that it will never stop me-- I surround myself with Diabetics who are conquering the world, I read the thoughts of those who are pushing the limits of what is possible, I talk with the experts who are pushing for us to go harder--- so much so that I forget entirely that I am sick. And I am sick. Sometimes, very sick.

I live a near normal life most of the time. Most people who know me have no idea I have this hidden life. The only people at work who know have been told so that in the case of an emergency someone will be able to tell the paramedics that the reason I am lying unconscience in front of a room of 11-year-old, terrified school children with a partially drunken juice box laying nearby is not because I am a passed out drunk, but because I have Diabetes.

Most people I socialize with may have heard something about it, but really have no idea of what it means. They get the shooting up thing and they have some faint notion that either I caused it because I ate too much sugar as a kid (which, of course, I did) or that I now can't have any sugar. They have no idea how sick I am. I do a good job at keeping that under wraps.

Even with the diabetic friends I now have, I am always tempted to don the Good Diabetic face. I will admit to the common mistakes (I don't change my lancet to prick my finger to get blood samples for months at a time, I reuse needles, and I don't always check my sugars before driving) but never the big ones. The ones you hide from even those who, most likely, are making the same ones within the isolation of their own world.

I almost believe it myself. I am fine. I am normal. And then comes a day like last Wednesday. This past week or so I have had blood sugars that are well out of even my overly relaxed comfort zone. Ones that some diabetics would flinch at the mention of. Not the 200's or low 3's that I can explain away-- I forgot to give myself insulin with dinner, my infusion site (or my plug as I call it) was bent.

These were a constant stream of high 300's and 400's that were becoming a steady state. I would enter the good zone only for a brief respite between long extended periods of highs that were starting to frustrate me. Usually a superhigh is short lived. I find it, I push more insulin, I come down and try to recover.

These just kept coming, one after another, and just wouldn't respond to the usual regimen. So, I got frustrated and changed my basal rates throughout the day. That was a good decision. I probably was a bit low overall and could have used some more during the day. But I should have upped it about .05 or .1 units. I went a little ballistic and hit it up .2 or .3. Yeah, a bit much.

I was about to go to bed and had a 375. Usually that would take 5.5 to bring me down during the day but at night it only takes half as much. I was a bit pissed at my body and decided if it wasn't going to respond, maybe I would push a little more than usual. So instead of the 3.7 units I probably needed, I went with 4.5.

Now, mathematically, that would bring me down only 75 extra points, not much when you're trying to drop 275. But the good zone is a small one. 80-120 they say. The safe and still alive zone below that is not much bigger. Drop below 30 and they say you're supposed to pass out and start convulsing and then just die. So, overshooting by 75 puts me down to 25. Not really where you want to be when you are asleep and way less likely to notice the symptoms of low blood sugar.

I woke up as I usually do with a low blood sugar. For some reason I have figured out a way to tell by the type of dream I am having that I am low. They get vivid and repetitive and stressful. Sometimes I am trying to eat and can't find food or I can't seem to get enough food. I was having one of these stressful dreams and woke up, grabbed my kit and headed for the kitchen, no time to test before I could secure a source of sugar.

I checked to see how big and chocolaty I should make my Nestle Quick. Would it be a small and barely brown night, or a big cup of sludge? Usually I am on self-steering mode. Get number, calculate, drink, drag my half-asleep body back to bed to fight off the sweats, then the freezings, aches and starvation sensations all without even thinking.

That night when I saw the 35, I actually thought. Loud and clear and scary. Oh CRAP. Five more minutes and I was DEAD. And not the I lost my term paper dead or I stayed out to late my parents are going to kill me dead. But DEAD dead. And I mean a literal five minutes. The way my sugars were dropping I would have been in the DEAD zone that quickly.

Thank God Johnny had been just loud enough to enter my dreams and get me awake to the point of watching my own dream and recognizing I was low. You see, Johnny is my CGM, my continuous glucose monitor. When my sugars run low he's supposed to make a beeping noise to wake me. (By the way, Minimed, if you're out there, what could possibly make you think that a beep barely negligible during the day would be loud enough to wake a sleeping person!!! Get it together and make it LOUDER!!!)

I am getting used to my relationship with Johnny. He can be annoying at times. Some of the time, during the night, he reminds me that in a few hours I will need to feed him data from my other blood glucose monitor to calibrate. Thanks for the heads up, now let me sleep. Sometimes he tells me that my sugars are 54- a wake up and Chocolate myself moment- when really I am in the good zone. Shut up already and let me sleep. Some nights its 8 alarms. Sometimes he, too, sleeps through the night.

Those are the good nights. Sometimes, I'm just so tired I shut off his alarm in the middle of the night without even waking up to realize it. But on this night, I couldn't be happier with his performance.

So, I woke up, sugared myself and with my self control shot for lack of sugar proceeded to give in to the Midnight Munchies. Two waffles, pretzels and shredded mini wheats. I could pull together enough brain cells to at least push some insulin to cover the food, but its never enough with my liver freaking out because of the low and pushing more sugar into my blood to try to save my life. So two hours later, Johnny notifies me that I'm now 235. Push 2.0 more units. Back to sleep.

At 6, when I got up, I was back at 54. And boy did it hurt. With my brain and body now in revolt mode I still had to get two kids ready for school and hope my sugars get high enough, quick enough to drive to school. Brain still didn't work. Students were asking me the simplest questions and I just couldn't answer.

They would ask, do we have homework tonight, and I knew they were saying words and that they expected me to say some words back to them, but I couldn't figure out what their words meant let alone how to put together my own set of words. I would just stare at them with this pained look on my face as my brain tried to work to no avail. I decided to come home early, right after I had finished "teaching" my classes for the day.

I came home to Tony, who I have got to say, is just about the best person to come home to like this. At this point, I had nothing left in me even to make the most simple of decisions. Do I stand, sit, eat, talk? I couldn't figure it out. So I just stood there, confused and hurting.

Tony canceled my workout and sent me to bed for an hour. With a night like that one, I was low on sleep in addition to hurting and would have normally passed out in about 26 seconds. Today I laid there for the whole hour just listening to every inch of my body vibrating with this blend of pain and ache. I could hear it humming. The noise wouldn't let me sleep and I was too brain dead to daydream so I sat there and listened for a hour.

At some point, I got a call canceling my 7 pm tutoring job that I was foolish enough to think I was going to make that night. Once again a victim of the 'I am not sick' delusion. I stammered that I was glad she was canceling because I was a diabetic and wasn't feeling well. She gave me the, 'Oh, I hope you feel better' line which is such a funny statement. Great sentiment and I understand she meant well, but is that even a possibility?

Tony woke me up and was off to an appointment. I somehow got in the car, turned the key, and made it safely to pick up my daughter, Shea, and made it alive. Once more, have to thank God for looking out for me. I could barely figure out if I should stand or sit let alone guide a huge hunk of metal down a highway.

When I got there, Eli, my youngest, informed me that he had to go pee. So off to the school bathrooms. Not a long walk, but, oh how it took it out of me. I was between wanting to throw up, pass out and scream. I couldn't figure out which to do first so I just walked back to the car with business taken care of. Checked my sugars again to confirm that I was, for the third time today, low AGAIN. And I had tapped all of my car sugars. So we were off down the hill to the store to buy some before the trip home.

Two kids in tow, big unfamiliar store, no idea of what to get. I was hungry and confused. All I knew was Gatorade. Just find Gatorade. Oooh, Lucky Charms. I can get a bowl and sit down right there in front of the display and eat about 22 bowls, that would do. Oh wait, social norms. Crap. Gatorade. Find Gatorade. Think it's on the far lane. Been here before searching for sugars during a run. Quaker Chewy Granola bars, grab those, too.

It's a throw back to my early diabetic days; the Quaker chewy granola bar became my unit of exchange. I kind of came up with my own system of food exchanges. I don't count carbs. I don't even know my carb-to-insulin ratio. I make it up when the doc asks because when I try to explain my system I get that 'you're crazy' look from him.

I don't really do the ADA exchange either. I do the Quaker Chewy exchange. I learned that 1 unit of insulin perfectly covers 1 granola bar. Every other piece of carb is measured against that. Most of my carbs have the same ratio of carb, fat, and protein. Any that don't go on a sliding scale that my brain does and pumps out a dose of insulin to match.

I bought a lot of those bars in the early days. They were easy to dose and fit nicely into the converted CD case that served as my kit (where I kept my insulin, syringes, and ancient blood glucose monitor.) And then, I stumbled upon it, the Holy Grail, my Gatorade. Open, drink, then pay.

I made it home, where Tony, again, assigned me to another nap. This time my body was vibrating a little quieter, a little slower, and the sleep came. When I awoke around dinner, I finally had started feeling a little better. My daughter had made me a get well card that almost made me cry. Maybe my limbic system was still a little off, maybe just really glad that I have my family around to pick up the slack when I am down.

I wonder what I did before Tony. I think I just hid in my closet and cried on a day like this. A lot less responsibility to deal with, just skipped classes and waited to surf another day, so it made it easier to hide. But at least now, I wake up to a house full of cheery faces who are glad to see me among the living. And who spur me on to go out and live and get back to the place where I can fool myself into thinking again that I am really not all that sick because it's only when I can get to that place that I can live.

It's there that I can race and sail and parent and wife with any semblance of normalcy. Because although my body is sick, although it revolts and screams and shuts down, my soul is not. My soul is the same it has always been, maybe a little older, a little wiser and maybe a little more jaded, but it's the part of me that I depend on, everyday, to be human. So I am off to Never Never Land - Never sick, Never sad-- I'll let you know if I ever get there.

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