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An Understanding – Part I.

** As part of National Diabetes Awareness Month, I am re-posting a blog I originally wrote on April 6, 2010.   Keep in mind that this simply describes the daily activities that go on all day/every day for myself and other Type 1 diabetics. It really doesn’t delve into the long term emotional and mental toll that diabetes wreaked upon me. Those mental and emotional aspects extracted a much greater price on my quality of life than the diabetes itself did.

As a PWD (person with diabetes, Type 1 in my case), there are certain things that I do everyday without really even thinking about them. Having been diabetic since 1970, to me diabetes is like having blue eyes and brown hair. It just is. Tho, thinking of it that way can cause issues because D has to be managed every day, all day.

That is something that a person without diabetes just can’t truly understand, even as much as they want to. Sufferers of other chronic conditions can get a glimmer of it, I’m sure. But I know, as a diabetic, that I have no idea of what it is truly like to have a condition like rheumatoid arthritis, lupus, hashimoto’s or any of the multitude of other conditions that people can be afflicted with.

When I was 7 years old, I learned that I had a disease. I would always have this disease and it would kill me. Kids are often smarter than given credit for, so even tho parent’s want to protect their CWD’s (children with diabetes) from stories of complications, given today’s media stereotypes, that is just impossible to do.  So from an early age we learn that we can go low in the middle of the night and maybe have a seizure and possibly die. We learn that DKA (diabetic ketoacidosis) can put us in the hospital for days and possibly even be fatal.

And it is not only media, but friends. Will parents not want this CWD to be invited to a sleepover?  This can be a very solitary disease

We learn that managing diabetes is much more an art than a science. We learn that it is like holding the ball on the 50-yard line. While balancing on one foot. With our eyes closed. You know you are eventually going to get hit, but you don’t really know from what direction it is coming. Did I mention the monsoon we’re standing in?

My first thought when the alarm going off in the morning doesn’t involve the snooze button, it involves me asking myself how I feel. Do I feel low? Do I feel high? Grabbing the CGMS to see what it says.

Disconnecting everything to shower, checking my feet, remembering to reattach everything, making sure my meter is in my backpack along with extra pumping and testing supplies and testing my levels before I walk out the door. Am I low, do I need to some carbs before I drive or can I go ahead and just bolus for the 30 carbs I’m going to get at the McDonald’s drive thru?

In case you haven’t noticed, I haven’t even left for work yet.

The day at work is much like anyone else’s stressful at times, meetings, deadlines. Will this high-stress situation drive my sugars up and will I correctly compensate for it?. Is the meeting at a time when it is not too unusual for me to have a low? Do I need to eat some carbs before? How will an approaching deadline affect my schedule? Will I miss meals? Work odd hours?

All the while monitoring my condition. Are my numbers reasonably normal for that time of day? Are they high? Did I miss my carb count or do I need to change my pumping site? Are they low? Did I miss my carb count, have a little extra exercise or has my insulin resistance and/or sensitivity changed? Are the highs and lows happening at the same time for a few days in a row? Do I need to start making small adjustments to carb ratios, basal rates and/or insulin sensitivity? Are the lows dangerous enough that I need to make some big adjustments to get my numbers high and then tweak settings to bring them down or are they minor enough I just tweak to bring them back to a normal range?

Hmm, business trip in a couple of weeks? Make airline and hotel reservations. Can I get by with just a carry-on? Pack travel size toothpaste, deodorant, enough pumping and testing supplies. Will I have trouble with security? Do I have my doctor’s note, copies of current scripts? Does that state allow syringes without proof of prescription?

Will new people I meet care that I’m diabetic and what diabetic horror stories will they tell me? Do I let those stories slide or let them know what I really think about hearing that?

How much will I miss my carb count by when I go out to dinner with friends? Will the restaurant have carb info on all their meals? Are they even remotely accurate? Should I test in the car or when ordering? How long will it take the food to arrive? Should I bolus when ordering or when my meal arrives? Remember to pick test kit up off table before leaving and test before driving home.

So now I’m home for the evening. Like everyone else, we PWD’s deal with all the other things in life that non-PWD’s have family, work, friends, hobbies, bills, taxes, favorite shows, telemarketing calls, what’s for dinner? How many carbs will be in that?

Why am I having trouble reading right now? Is my sugar low? Yes it is, that’s right! I suffer from hypoglycemia unawareness. Why didn’t my CGMS alarm? Because it has gone to ??? status (and doesn’t alarm when it does) so it shows no reading. The meter shows 42. Will 15 carbs be enough? Am I actually capable of getting to the carbs? How much insulin do I have on-board? Is this low a reaction to a bolus at mealtime or a reaction to a basal rate that is too high? Or is it just one of those WTF moments where there is no explanation?

Did I get my sugars back up? Or am I still chasing this low?  Did I have too many carbs? Will I go high? If I did, do I want to correct before I go to bed? If I do correct, should I trust my CMGS to go off or set the alarm to get up and test?

Now I lay me down to sleep, I pray the Lord my levels to keep.

** You can also read An Understanding Part II and An Understanding Part III

© 2012 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com

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