Not sexy.

15 06 2012

I hate diabetes.

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Slander

12 06 2012

Disclaimer: this is a controversial topic that I get very heated about. Read at your own discretion.

Here’s the definition of an artificial organ.

An artificial organ is a man-made device that is implanted or integrated into a human to replace a natural organ, for the purpose of restoring a specific function or a group of related functions so the patient may return to as normal a life as possible. The replaced function doesn’t necessarily have to be related to life support, but often is. Implied by this definition is the fact that the device must not be continuously tethered to a stationary power supply, or other stationary resources, such as filters or chemical processing units. (Periodic rapid recharging of batteries, refilling of chemicals, and/or cleaning/replacing of filters, would exclude a device from being called an artificial organ.)

Okay, now here’s the definition of the artificial pancreas.

The first-generation system of the artificial pancreas will use a CGM device and an insulin pump.  The wearer will still need to manually instruct the pump to deliver insulin at times, such as around meals, and adjust insulin delivery rates based on activity, illness and other variables.  But the system would “treat to range,” that is, try to keep blood sugar within a set range between, for example, 80 mg/dL and 180mg/dL by automatically increasing insulin delivery when it senses blood glucose going above the high end of the range, and slowing down or turning off insulin delivery when it sensed blood glucose levels moving below the low end of the range.

Now I don’t have a medical degree but what the hell? How dare they call the closed loop system, the “Artificial Pancreas Project”. The trade-off is that I have to wear a bulky, painful, stress-inducing CGM in order to no longer have to manually give myself corrections. This repugnant “Artificial Pancreas” consists of two external devices that are already available to the public. The only new “medical advancement” is an algorithm connecting the two.

Did I mention, these two devices that I will be forced to wear are external? And it’s not even one device, it’s two. How the hell can you call this an “artificial organ”?!

Everyone’s getting so thrilled about this being the future of diabetes. They’re bouncing up and down with excitement. It’s all you’ll read about in a diabetes magazine or online articles. It’s all you’ll hear about at any diabetes conference or panel. In fact, it’s all I heard about when I participated in Children’s Congress. I had to be an advocate, a child spokesperson, for the “Artificial Pancreas Project”.

As a teenage diabetic who has raised over $50,000 for diabetes research since 2004, I have had no say in what my money goes towards. If I disagree with what they’re doing with my money, I am shit out of luck. Because I am outnumbered.

I’m pretty sure I’m the only diabetic against the APP. There must be others out there. I must find you. We must convene.

The APP doesn’t sound like a blessing to me. It sounds like it will make diabetes into a bigger burden. I will be forced to have more external symptoms of my chronic disease. It won’t make life any easier. I will still have to be conscious of my disease at all times and always paranoid. I will always have to be prepared for the unexpected.

I want a real Artificial Pancreas. I want a surgeon to rip out my bum pancreas and replace it with a man-made machine that will do exactly what a normal functioning human pancreas does. I don’t want to be in control of my disease anymore. I want a machine to do everything for me, with precision. I don’t want to have to worry about diabetes anymore. I want to live my life as if I don’t have it. I totally won’t mind having to spend a little more time in airport security if it means I will be free of the guilt of managing my diabetes and having to be perfect all of the time.

When the APP is released to the public, I do not want anyone to think it truly is an “artificial pancreas”. But considering how small-minded people already are about diabetes, I already know the outcome of this. Life will not be easier when the APP is released. I don’t understand how everyone has gotten so brainwashed about this.





Baggage

12 05 2012

So yesterday after school, I went to a picnic for my school’s Best Friends Club and then went to the gym with a couple friends. I’ve been running really high (300s-400s mg/dL or 16-27 mmol) during the week from late morning til the afternoon. After a few site changes, I’ve concluded that I need to adjust my basals or maybe my sensitivity rate. Anyway, it’s been really annoying. I’ll test well before lunch and give myself a correction and by lunch, I’ll still be high. Bleh.

At lunchtime, I was 480 mg/dL (26.7 mmol), and not feeling so great. I sucked it up, made it through the day, and went to the picnic. Some of the dd kids were extremely active, so there was a lot of running around. Over the course of 90 minutes, we played tag, duck duck goose, red light green light, frisbee, catch, etc. There was socializing and snacks, and I bolused accordingly.

My friend picked me and another friend up at the picnic and we ran a few errands before going to the gym. We made it to the gym, got changed, I bought a water bottle, and we headed over to the ellipticals. After less than 10 minutes on the elliptical, I felt unusually weak and shaky. I knew it wasn’t from the exercise, because I had it on a low setting and I hadn’t been on that long. I stopped the machine and told my friends I felt low and I was going to the locker room to test. My friend asked if I wanted her to come with me and I couldn’t really think straight so I just said “I don’t know”. She said I was scaring her and I told her “I think I’m fine” so I stumbled my way back into the locker room. I dialed my combination in, dropped the lock, picked the lock back up, and fumbled through my bag til I found my blood glucose kit. I sat down on the bench, tested, and sure enough I was 34 mg/dL (1.8 mmol).

I put my stuff back in the locker and walked over to the ellipticals. “Guys I’m low”. They asked if I’d be ok and I said I needed to go into my friend’s car and get some candy out of my bag. They asked how long it would take to bring my sugars back up and when I told them at least a half hour, we decided to leave. After gobbling down some sour patch kids, I realized how guilty I felt.

Now it wasn’t my fault we had to leave, it was diabetes’s fault. But it is my diabetes and, therefore, my fault. Even though lows come out of nowhere sometimes, I still could’ve been more careful to prevent the low. It was an unusual day so I should’ve tested more. I should’ve been more on top of it. It was my fault my friends had to sacrifice their afternoon at the gym. It was my fault we wasted all that time and gas.

Diabetes is a burden, and in many cases, it makes me feel like a burden. I hate having this excess baggage. I hate that my baggage has to interfere with my life and my friends. I hate being the diabetic one. I hate being responsible for ruining things.

I have to get over it. As much as I hate diabetes, it is a part of me.

And I can’t hold grudges against myself.