Diabetes by the Numbers

252 - Last blood sugar reading 684 - Highest blood sugar on record- although it may be a bit inaccurate since the new meters don't go higher than 599 28 - Lowest blood sugar on record- They say you're supposed to pass out at 30 102 - Favorite blood sugar- high enough not to worry about lows and not the "perfect 100" that everyone else strives for 15 - Pounds dropped at diagnosis 19 - pounds gained after starting insulin 8.3 - Last A1C blood test 5-6.9 - "good" A1C range 7.0 A1C I want 5.5- A1C that I would "shit bricks" over 9+ - A1C that makes me cry 36 - Number of A1C test results I have had to endure 8 - Mini boxes of candy I had last night on Halloween 10 - how much I hate Halloween on a scale of 1 to 10 because of the constant temptation of packages of candy just small enough not to register on the "to avoid" list

1,460 - Number of shots I took before giving up the shots and getting an insulin pump, never to look back 42,340 - Number of times I have sliced a tiny hole in my finger to extract enough blood to give to the machine who will grade my diabetic efforts for the last few hours and give me a result that will either make me smile or make me curse, but either way will better inform me of my enemies tactics and how I can outsmart him. 2,867 - Number of curse words spilled from my mouth in reaction to diabetes 1 - Number of entire boxes of Rice Krispies almost poured over my head in a state of low blood sugar 528 - Number of crying spells brought on by my enemy 2 - Number of E.R. visits due to freakishly high blood sugars 1 - Number of official D.K.A.'s because a box of recalled pump infusion sites got out to me and happened to get used at the same time I was battling the flu (and yes I am pulling out every reason in the world that this one was NOT MY FAULT) 2 - Number of crazy docs who thought they knew more about my body than I did and set me up to do or believe down right stupid things like I would never be able to walk barefoot or that to have 7 different basal rates on a pump is "not necessary" 3- Number of amazing docs who know I live with my body and my enemy daily and who work with me to sharpen my battle plan, who give advice on new research, new tests or new technologies to fight the bastard 14 - years I've had diabetes 12 - years I spent trying to battle diabetes on my own 1,000's friends I feel like I have through Insulindependence.org who help lend support and comfort as we fight together 20ish- the actual number of friends I have made through Insulindependence, though their support makes it feel like more 764 - the Number of times I've said to myself, "Now why didn't I join Insulindependence sooner?" and replied to myself, "Oh, Yes, That's right, they've only been around since 2005!" 864,357- people I wish I could tell to become a part of Insulindependence- It will change the way you attack the enemy 62 - boxes of pump supplies, glucose monitor supplies, sensors, tapes, I.V. Prep, glucose monitor strips and other assorted supplies in my closet/pharmacy 42,120- used blood glucose monitor strips I've sent to the landfill 24 strips currently in various crevices in my car 56 strips currently in my wallet/monitor case 138 strips in the trashcan in the bathroom 2 strips in my running bag 33,476 words written in my slightly humorous (but only to the warped minds of the world) memoir on life with diabetes and sailing solo through the keys 16,534 words to write by November 30 to be a winner in the NaNoWriMo or the National Novel Writing Month 551.13 words per day to write to meet that goal 665 words written so far today, oh wait make that 674. 16 Times I've said since I committed to NaNoWriMo last night, "Oh Crap! How am I ever going to be able to pul this off?" 14 sailing books I own and have read- most of which end in hideous disaster and ruin 3 boats I own, though the largest of the fleet is 15 inches long and attached to a stand so it doesn't tip over on my desk 12 - number of feet of the boat I will build this Spring Break 2- number of children who will help me build it 22- feet of the boat graciously donated for me to use for my trip this February by the Key Lime Sailing Club, my favorite sailing club in the world 4- days I will spend sailing alone int he Florida Keys 100- nautical miles I will cover from Key Largo to Key West 480- GPS waypoints beamed to the satellites and then back to mapmytracks.com where anyone can follow along as I sail 168- messages sent to the social networking sites to update everyone of everything I am doing, seeing, hearing, smelling and eating along the way 7500- dollars that I am trying to raise to benefit the oceanic recreation branch of Insulindependence.org 765- dollars I have already raised (thank you, by the way, to all those amazing people who have helped out in this) 105- days left to raise the additional $6735 64.14 -dollars to raise each and every day until I sail 872- times I have said "Oh Crap! How am I ever going to be able to pul this off?" 4696 miles to fly 63 miles to drive 5 sunsets to watch 3 manatees to talk with 82,354 skeeters to avoid 459 pictures to take 152 minutes of HD video to take so I can edit it down to the 3 minutes I am not looking like a total dork 6840 minutes I will be truly enjoying myself as I seek to take some time away from my everyday life to reflect on what diabetes has done to my life and what the fight against letting it take over has done for my character and my life 40,000 words I will have left to write to finish the memoir expressing those new revelations I am sure to have while spending 6840 minutes alone on a boat in the middle of the sea (well, ok, maybe not the middle of the sea, but far enough away from land that it will feel like the middle of the sea) 17 minutes I have just forced you to read far too many numbers 63 useless numbers that have now been stored somewhere in your brain taking up valuable space that could have been used to remember your telephone number when you move into the retirement home when you are 89 1 person you have now far too many unrelated details about that may come together to form a slightly clearer picture of (sorry Mrs. Fullenwider for ending that one with a preposition)

Sensor Dating

A TYPICAL LOVE STORY

I have had the great fortune of trying out a new continuous glucose monitor recently. I currently am using the one my insurance says they prefer, but, a friend of mine happens to work for another company out there producing the CGMS’s.

So, I thought I would give it a try. Being a scientist by training, I decided to run both sensors at the same time to see first hand which is more accurate and which I like more. As I did, I began to get the distinct impression that wearing two sensors at the same time is a lot like dating two guys at the same time (not that I speak from experience, I have rarely been lucky enough to find one guy to date, let alone two at once).

GIRL MEETS BOY

I realized that Johnny, my first CGMS, had developed a sort of relationship over the last year and a half. The first couple of numbers he spits out with any new site, I tended not to trust fully until I had confirmed them with my regular blood sugar meter.

Once a day or two has gone by and he was consistently telling the truth, I began to trust what he was telling me. I slept a little easier knowing he was on guard to wake me up if my blood sugars got a little too low or way too high at night.

I could have a conversation with him (really a series of pushed buttons) to decide on a range of acceptable numbers where he wouldn’t have to alert me. And the more I worked with him the more time I spent in that range, that range that would extend my life by at least a few months if I could stay there permanently.

Working with Johnny changed my diabetic world. I could finally sleep at night without great fear, I always had an extra set of eyes to search out wayward sugars. He was my first CGMS and I will never forget what he taught me and how he changed my life.

GIRL MEETS OTHER BOY

But then Michelle, my friend with an inside track to new technology, introduced me to Nick. And Nick, my Dexcom sensor, was different. Instead of just dumping Johnny, I decided to try having a relationship with both at the same time. And that’s where the trouble began.

THE SCHEME

I set up both sensors to start at the same time so neither one would have the advantage. Just like a first date where both people are a little bit nervous and not quite themselves, sometimes with a CGMS the first few numbers can be a bit off. Then, when everyone is relaxed and comfortable in their new surroundings, we can really get into the groove of things.

So, I let both boys chill out for a day and then the testing began. With every new gadget comes new enthusiasm and the race between Nick and Johnny was no different. I tested on my regular meter almost hourly. I wanted to see who was more accurate, who would follow my trends up and down quicker. In effect, who was the better partner.

The problem was that I couldn’t develop any sort of trust with either one. I would be 148 on my hand-held meter. Nick would say I was 120, Johnny 180. They were both off and Johnny was high. An hour later I would be 250. Nick says 276, Johnny 221. They’re both off again but Johnny’s low now.

WHO WINS OUT??

I did find that Nick was clearly better on one thing, catching my lows. I felt a little low and tested to find out I was 56. I pulled out both guys and set them in front of my face waiting to see who would figure it out first and how long it would take.

Nick was up just 2 minutes later with a 56. Spot on. I downed some sugar to get back into the normal range and waited. Five minutes later Johnny came back with a 85. Still not low enough to set off the alarm. Five more minutes and a 78, low enough to set off an alarm but not accurate enough to convince me on a normal day to go running for the sugar.

Johnny was a full 12 minutes late and 22 points off.

GIRL CHOOSES BOY #2

Since one of the most important reasons I got a CGMS and that I continue to deal with all the hassles and pain that come along with the technology is to catch lows I was no longer feeling, Nick clearly wins in this category. Huge points in his favor.

I decided that to give Nick a real chance I really needed to start that relationship with just him and so got rid of Johnny for a time. One of the things I realized in this time is that Nick listened more. When you use CGMS, two to three times a day you test on a regular meter and feed that data to the CGMS.

With Johnny reading 158, if I tell him I am really 120, he just says, “That’s great. I accept that you say you are 128. But I still say 158.” There would be no change in his data.

Nick would listen immediately. I tell him I am 128 and he replies sweetly, “I had 158, but if you tell me 128 let’s meet in the middle. How about we go with 143?”

AND THEN BOY LEAVES GIRL...

Shortly after I started my relationship with Nick, I was moving and after bumping into a lot of furniture realized that we had separated. I mourned the loss, but busied myself with all that moving demands.

It wasn’t until about a week later when my life slowed down and I had time to go back to Johnny (my supply of Nick's sensors had run out) that I realized what had happened. I had charged Johnny’s transmitter, stuck a new sensor in the gun that I use to inject the sensor under my skin to give it access to my blood stream, swiped my hip with alcohol and got ready for the pain to come.

I sat for a moment while I tried to convince myself to pull the trigger, a process that sometimes can take minutes, my self-preservation struggling with having to purposely hurting myself, and I thought back to when I started with Nick.

It was surprisingly painless. I kept waiting for the pain to set in and it never did. The sensor is by far way thinner and round, a seemingly petty detail but when you are injecting a long, metal thread into your tissue, the shape can make a huge difference in the way it rips through your flesh.

The sensor Johnny uses is rectangular. As far as piercing skin goes, rectangular tends to tear much more and cause considerably more pain. And it wasn’t just the pain. I realized I missed Nick’s accuracy and how he could yell loud enough for me to hear him while I slept. And how he doesn’t have to hurt me as often.

The sensor he uses goes for 12-14 days (off label, of course). Johnny hurts me every 5-6 days. And because of that I tend to take more time between when I remove one sensor and start the next. Time I need to have data and reminders. Time that, with sugars swinging more wildly, could add up to more complications and complications that strike when I am younger, really taking days or months or years off my life.

I don’t have that kind of time to waste. I need all of my days. I have stuff to do.

GIRL GETS BOY BACK

And so I have gone back to my friend Michelle like a now addicted druggie, begging for any way that I can get my next hit. I have started the paperwork to once again fight with my insurance so that they wil cover a better product even though they usually like to play with their own pre-picked companies that put out an inferior product.

Lucky for me, the people who make Nick are exceptional people. Not good customer service, although it is, but good people. Everyone I have met who works for Nick's company are genuinely interested in helping Diabetics get good technology. They have seen how it can change a person's life and will work above and beyond to help you get what you need.

And it is never a call to some company somewhere in the world who is working just to get a paycheck. They are real people with real email addresses and real cell phone numbers who will come over to your house to let you borrow a system and show you how to use it and actually care how you are doing with it.

So battle I will. My last insurance battle took six months and countless letters and research and follow-up, but at least this time I know I will fight alongside some great people to get an amazing technology. Nick, baby, I am coming to get you and I won't stop until you are back in my life.

There's Always a Way

With so many limitations placed on diabetics by doctors ("You'll never drive a big-rig for a living"), the media (in that news-casterly fake empathy, "Diabetics must watch and measure every thing that goes in their mouth"), and the general public ("Should you really be eating that cookie with your sugar disease and all?"), I sometimes surprise myself but setting up my own barriers.

A few weeks ago, I concluded and posted a blog stating that I should never (a word our pre-marital pastor told us should never be uttered in marriage) take a sleeping pill because it makes waking up and treating low blood sugar very difficulty and could lead to a very dangerous and even life threatening situation. I was certain it was now on the list of things I will never do, right next to eat a scorpion, hike Antiacrtica (I hate the cold), and drive big-rig for a living (I really didn't want to do it, even before the doc told me I shouldn't). The thyroid problems I have been having lately have made it so that it is very difficult to get any sleep of good quality. Its like trying to sleep after consuming 30 cups of espresso and downing a bottle of no-dose. Your mind never really slows down enough to get good sleep. Vivid, anxious, haunt my dreams all night and my body is constantly tossing and turning trying to calm down enough to get comfortable.

After a particularly bad stretch of horrible nights, I revisited the thought of a sleeping pill. I started playing around with how it might be possible. What if I had someone wake me up every hour to test my blood sugars. But, that kind of defeats the purpose of getting a good nights sleep.

O.K. So what do I have? I have a Minimed Continuous Blood Sugar Monitor, Johnny, but, he sometimes won't catch a low until I have been in the 30's or 40's for about a half hour. (For reference, the docs tell you you'll pass out at 30 and if nothing is done, you'll die.)

But I can change the range for which he alarms me. So I tell him to buzz me when I get to 100. One hundred is in the normal range, but I find if my sugars drop, I can feel them going low while Johnny still says I am 100.

And I recently have fixed a series of nighttime lows by reducing my basal rates in the first part of the night. I haven't had a low overnight in 4 days. I can also purposely run my blood sugars a little high, not high enough that I will wake up the next morning feeling hung over, just high enough to guarantee no lows. So I indulge in an extra mother's day cupcake that my daughter made all by herself (yes, I am a little proud that my seven year old can already bake). The evening becomes all about getting everything in order before I take the pill. Sensor in at 6. Calibrate it at 8. Check to make sure it is accurate and trending along with my regular blood sugar monitor which requires a stick every half hour.

At 9, I pop a pill and eat my cupcake. 9:30 and 10 come with more checks of the blood and at 10:07 while watching another episode of my dumb T.V. shows (as Tony calls them), I can feel the pill take hold and get the distinct feeling that I should get into bed rather quickly before I pass out for the night on the hard wood floors of our living room. I wake up the next morning.

I wake up the next morning. It's a funny world when you are appreciative that you actually wake up, when death at night is a constant possibility and every night you lay down could be one that ends up with you coming to while staring at a ceiling that has become so familiar you can recognize which room in the ER they have wheeled you into by the pattern of the roof tiles and lights.

But it is also a life where sleeping through the night is a huge accomplishment. Another battle you have fought valiantly and won. One more notch in your belt of all of the ways you have never let the disease win. My Junior High math teacher always said one day when I grew up I would use all of the skills I learned while solving one stupid word problem after another. I can tell you I do it every day with almost every decision I make to get a leg up on this disease.

So fight on, and make sure you are not adding barriers to the ones the world has already placed for us.