Out, damned set! out, I say!

I usually change my infusion sets every 48 hours, in the evening. I do it at home where all of my stuff is, I'm not rushed, I can lift up my shirt without feeling weird, I have resources for disposal of giant introducer needles - the whole scene is just way better than any alternatives.

But. (It's diabetes. There's always a but.) Sometimes I forget to change that set. I notice when I get a stubborn, sticky BG that just won't settle back down. A hovering line on my Dexcom anywhere between 140 and 200 - nothing epic, but incredibly aggravating since it just. won't. budge. Once it dawns on me that I've missed my 48-hour set change window, I double-time it to get a new one in. Alas, sometimes that means I have to leave my little comfort zone and do a set change at work. Like I had to do today.

I leave a box of sets, a box of reservoirs, and a kerchunker at the office for emergencies. Today I lugged in a bottle of Novolog, too. I got most of the change set up - reservoir filled and hooked up to tubing, pump primed and ready to go - and then scurried to the ladies' room to insert the set. Note: I generally refuse to do diabetes care in the bathroom on principle (I firmly believe my disease does not need to be relegated to the level of excreting waste!). But I have no desire for my cubemates to see my bare midriff, so desperate times call for desperate measures, amiright?

TMI time, kids.

I entered a stall, hiked up my blouse, and undid the top of my skirt so I could access some fresh real estate. A quick kerchunk, some fiddling with adhesive, and the set was in. Someone else entered the bathroom as I finished and, on autopilot, I flushed the toilet. (My "business" was done, and apparently that's what my brain associates with "finished business.") Now, I usually leave the old set in for an hour to help with the Set Transition Highs - a little trick I learned from Sarah that's helpful for me, but only if my numbers aren't already crappy - but it was hurty and I was high, so out it came.

Of course it was a gusher. I immediately started hissing "shitshitshitshitshit," dropped my skirt to the ground so it wouldn't get covered with blood, and grabbed for the toilet paper. And when I say "grabbed," I mean "yanked" such that a healthy puddle of tissue ended up on the floor. You know, next to my skirt.

I stood there, adding wads of paper to my gushing bleeder, pushing against my stomach to stop the outpour, swearing and trying not to trip over my skirt...and then I remembered I wasn't alone in the bathroom. What kind of horrible poop-related disaster was this poor person imagining from the next stall?!

The bleeding finally stopped, but not before the stall looked like the scene of a triple murder. I cleaned up, scrubbed the blood off my hands, and tried to escape the bathroom while looking cool, calm, and collected. All the while fervently hoping no blood started to ooze out of my shirt on the way back to my desk.

This sort of stuff does NOT happen to the non-pancreatically challenged.

The reason for the drama: a kinked cannula.

The artificial pancreas is important and all...

but I'd REALLY like some research into why toothbrushing temporarily fixes a busted pancreas.

Hunger games

No, no, not that rad book series. But the kind of hunger PWDs struggle with - the one where you feel those pangs because you actually need fuel to sustain yourself, rather than pangs in response to varying levels of blood sugars.

I vividly remember the first time I felt real-people hungry after my diagnosis. I was in college, and had just made the switch to Humalog. I was wandering around the mall with my mom and realized I was starving. My stomach felt like it was dissolving itself and it took a horrifyingly long time for me to realize that the sensation was hunger - it had been years since I'd felt it.

I looked at the clock and it was way past my usual NPH-peak snacktime. I had blown right by it and hadn't gone low. I'd just shopped and browsed, blissfully unaware, just like a normal person, unconcerned with insulin and blood sugar and where my next meal was.

Of course I promptly burst into tears in the middle of the food court. It's not often you're able to be 100 percent aware of your life changing radically for the better.



(h/t to Kerri for the inspiration! Her post this morning, linked above, brought me instantly back to that moment of time.)

Up up down down left right left right B A select start

1.0.0.

It's over 80 degrees in New York today

So I thought I'd get outta the office to enjoy a quick walk around the Columbus Circle neighborhood:

The Circle! Nothing looks quite as New Yorky as a slew of cabs.

A troop of Boy Scouts! I hope they were prepared.

The bike rental guys are AGGRESSIVE every summer -
it's a wonder they don't tackle tourists en route to Central Park.

It wasn't all just soaking up the sun. I also bought new cookie sheets! :)

Getting to Brooklyn at the end of a workday

and being greeted by this munchkin? Priceless.

What the what, T1D Exchange?

I enrolled in the T1D Exchange Clinic Registry a while back. I haven't been asked to do much for it aside from filling out a little packet and agreeing to become part of the program. Until this week, when I got an emailed survey.

A survey? That could potentially help patients with Type 1 diabetes? I'm in.

Except, hoo boy, were some of the questions doozies.

Um. I don't think my diabetes is placing a burden on my family. I mean, sure, it's a pain in the ass. But so is L's sleep schedule and I don't consider that a "burden" - I consider that life with an eight-month-old baby. Similarly, my diabetes is time-consuming, it takes a toll on my body, it's a helluva lot of work and stress...but it's not a burden on my family. I was offended that there was no "I don't think my diabetes is a burden on my family" option in the multiple choice.

And then there was this gem:

Eat something I shouldn't? Whatchoo talkin' 'bout? As long as I eat healthy food in moderation - like EVERYONE IN AMERICA should be doing - I can eat whatever I want, as long as account for it with an insulin bolus. The days of food exchanges and NPH peaks are well over for yours truly. Speaking of which....

An eating plan? I thought that died with the food exchange system. Have these people never heard of carb counting or Humalog?

And don't get me started on the mental and relationship health questions - no, survey people, I do not often consider divorcing my partner. (First question in that section, I kid you not.)

On the whole, I'm thrilled to help out and I can only hope my clicking helps someone somewhere kick this disease to the curb. (Or, heck, even just help some fellow PWD avoid complications or feel better on a day to day basis. I'm not greedy.) But the questions on the survey make me wonder who wrote the thing - it's part of a program affiliated with some of the top diabetes centers in the country. You'd think they'd have had some input over the language used.

If there's anything worse than Dexcom's ???s...

it's getting the ??? when your last three blood sugars have been 35, 87, and 41 and you're heading to bed.

Rassafrassing ???s.

By the Numbers: Report #5

Today:
7-day - 93
14-day - 116
30-day - 127
TDD - 35.54

I'd like to think the nicer averages are all about a jillion blood sugars that fall precisely in range like rows of little toy soldiers. That would be fiction, though. Reality involves plenty of bouncing around - I just have a little more hang-time in range than I had before. Why is diabetes management so reminiscent of playing a fast and furious game of pinball?

I did a whopping TWO WHOLE DAYS of logging last week. At this rate, I might - might! - work my way up to having 14 continuous days of logs to bring with me when I go see the endo next month. Might. (I'm not holding my breath.)

On the agenda for this week:
- download my Dexcom to see if I'm missing any patterns
- continue to log (er, um, attempt to log)
- not eating buckets of Easter candy

Keep on keepin' on, kids. Hope your week is smooth sailing!

*   *   *

Past reports:

March 12 start:
7-day - 158
14-day - 151
30-day - 156
TDD - 40.86

April 2, report 4:
7-day - 136
14-day - 151
30-day - 141
TDD - 37.28

March 26, report 3:
7-day - 165
14-day - 136
30-day - 144
TDD - 35.25

March 19, report 2:
7-day - 113
14-day - 132
30-day - 140
TDD - 37.10

Mindreaders

Last Sunday, I changed out my Dexcom sensor as I always do. I grabbed the box, yanked out the package...and saw it was the only one in the box. I usually order my supplies two or three weeks before I'm completely out so that I don't have any lag time between sensors. I was surprised to see how far it had gone, but figured "Hey! I've got a week before my sensor expires. No sweat."

Except when I called for reorder on Monday, the very nice customer service rep Hmmmed. 

Me: "Hmm? Why 'Hmm'? Is something wrong?"

Rep: "It appears as though your prescription expired last month."

Instant dread. I'd have to call my endo - there was no way I'd going to get a shipment in time for Sunday. Which meant I'd have to insert the damn thing solo as soon as I received it, instead of having a helping hand from B on his day off. Which meant I'd be stuck with sensors in spots that were accessible for a one-handed insertion, instead of out-of-sight-out-of-mind on my lower back where I like them. Ugh ugh ugh. D karma for not paying closer attention to my supply situation.

Rep: "Oh, wait. It looks like there's a renewal here - it just got put in the wrong place. You get a 3-month supply, right? We'll have those out to you today!"

I don't know who to thank - Dexcom or my endo - but MAN am I glad they were more on the ball than I was.

Glorious supplies!

Light and dark

By the Numbers: The A1c

6.5

Six. Point. Five. I don't know how it's possible. The 156 30-day average I started with should have kicked me up to 7.1 at the very least - and even though the A1c measures for a longer stretch, I still don't understand how it's as low as it is.

Maybe it's The Dexcom Paradox? I know for a fact that when I'm coasting with a perfect BG graph, feel fine, and don't see any dramatic dips and mountains...well, I just don't test. I know that even if Dex is 20 points off, I'm still in range, and I have other things I'd rather be doing than stabbing myself. But when I'm high? I'm a serial tester. I bolus and then watch that BG, willing the insulin to work faster so I can feel better. And I test over and over again, in hopes of catching that moment when my Minimed's bolus calculator does the math and says "Hey! You actually don't have enough on board to cover this crazy-ass blood sugar. Dial up .2, please!" Perhaps that repeated testing while high - and not testing when Dex says I'm aces - is giving an inflated average on my meter?

It's diabetes. I'm sure I'll never actually know why - too many factors to consider, too unpredictable a disease. So even though I feel undeserving - I didn't do anywhere near the work required to get that kind of A1c - I'm delighted, and I'll take it.

The March to the Endo is looking a lot less bleak now.

Changing it up

A lot of people find buying a little D-something helps with burnout. A cute meter case, a new medical ID,  blue nail polish for Fridays - whatever works as an inspiration to get refocused on the disease. Well, I'm totally that kind of person, and have been searching for my source of inspiration...and, while $25 in new lipsticks from Rite Aid was a nice boost, it was more of an "Ugh, this weather is terrible and I feel new-mom schlubby" kind of kick than a "Woohoo, let's lock you down, dirty D!" one. 

But my search got a little nudge in the form of diaTribe's Issue #41 in my email inbox yesterday. Their test drive this month was meters, and now I'm nursing a little crush:

I think Steve Jobs would dig this puppy.

I know a few people in the DOC have had the opportunity to test drive this (Kim at Texting My Pancreas, Kerri at Six Until Me, and Stacey at Girl with the Portable Pancreas definitely did, and I'm sure there are others out there, too). I noted with interest when I read their posts, but I was truly clobbered by Adam's description:

When the meter discovers a pattern following a test result, it immediately flashes a message. For instance, I received one that said: “Low Pattern – March 16, 12:30 pm. Looks like your glucose has been running LOW around this time.” After I selected “Get details,” the meter displayed the past glucose results associated with the low pattern.

To me, that sounds like a Dexcom-level analysis - rapid feedback showing patterns in your numbers without any number-crunching done by the person who's testing. How rad is that? I know I struggle with getting my info downloaded, logged, and interpreted. I feel like a glowing success if I manage to do it once a week! Having this more consistent feedback would, I'm sure, mean me paying a lot more attention to something that happens day after day...and actually changing things to accommodate that.

Truthfully, I'm THE MOST in love with another meter they profiled: the Telcare.

I would do bad things for this meter.

Automatic upload of glucose results! Fancy-pants iPhone app! AND IT TALKS TO YOU LIKE HAL:

The meter also gives the user constant feedback on testing averages and trends through an innovative communication feature. Following a test result, the Telcare system analyzes a user’s data and sends customized messages right to the meter. Some examples that I received included: “Adam, you have completed 90% of your targeted tests this week and your glucose is within 20% of target,” (cool!) “In the past 7 days, your pre-meal BG average is 118 mg/dl,” and “Your average BG today is 106 mg/dl.”

At the core of true nitty-gritty diabetes management is lots of little changes over a long period of time that yield huge results. I'm convinced that having a meter that provided this sort of instant feedback would be a game-changer for me. And I'm sure they'd be better than my current OneTouch UltraLink. (I mean, how could they NOT be? Sometimes I think a Magic 8 Ball would be an improvement in accuracy.)

But - the inevitable "but" - what about insurance? Right now, all my strips are completely covered. My meter was free, as I got it by prescription. I'd bet dollars to doughnuts that the newer meters and the required test strips are either a) completely uncovered, b) covered unfavorably compared with my current UltraLink, or c) require so much hoop-jumping that even if it's possible to get it with an appeal (or twenty appeals) the sheer effort  involved isn't worth the trouble. Not to mention the little negative interior voice that says "And you could achieve the same effect by logging and downloading your information, you lazybones."

And isn't that the rub? A lot of our gizmos have bells and whistles we covet but aren't really necessary. Not like insulin is necessary. Or glucose testing is necessary. But our job as PWDs is daily management of a chronic condition and that's a freakin' long row to hoe. Forever is a really, really long time. So every little bit of equipment we get our grubby little mitts on, every little log innovation or carb counting trick or diabetes shortcut we come across, helps us keep our focus and do our jobs a little better.

Sign me up, then. Put me on the list for the next fanciest meter (my heart belongs to HAL!), the most tricked-out CGM, the shiniest pump. I need some inspiration, and I'll take it wherever I can get it.

Right after I call my insurance company, of course.

My boss

She is a nice lady. My belated birthday tulips are quite lovely!

OneTouch strips and a pic of L captured, too.

By the Numbers: Report #4

Today:
7-day - 136
14-day - 151
30-day - 141
TDD - 37.28


Well, it seems as though I've settled into a gradual drift down in the numbers department. The shock-and-awe drops are always better somehow, though. Watching the radical shift in what you're doing is a more hardcore payoff for all the mental work involved in diabetes management, right? I think the gradual drift is more sustainable, though. Baby steps, Bob.

I'm still sucking hard at the logging, though. I've resorted to deputizing B as my heavy (sorry, dude). It can help to have someone around to say "Hey! Logging!" So I will try tonight, again, to get on that gravy train.


In other news, despite a blood draw on March 16th, I still haven't received my A1c results from my GP. After two calls to his office, I finally lied to the nice medical records lady and told her I wanted to bring my labs to my (fictitious) endo appointment this week - she's mailing them out today. Devious, I am. Not that I should have to be. Grumble, grumble, grumble.


Wishing everyone a week of smooth sailing!

*   *   *

Past reports:

March 12 start:
7-day - 158
14-day - 151
30-day - 156
TDD - 40.86


March 26, report 3:
7-day - 165
14-day - 136
30-day - 144
TDD - 35.25


March 19, report 2:
7-day - 113
14-day - 132
30-day - 140
TDD - 37.10

Of all the wonderful birthday wishes I've had...

this one has GOT to be the most hilarious:

The Squirrel Board? Yes, the Squirrel Board. Years ago, we had a little squirrel crawling on the bars of our garden-floor apartment window - I tried to shoo it away, and to my horror the little thing freaked out, fell, and bashed its little nose. I felt awful and was afraid it was going to die, so I hit Google for information. The Squirrel Board popped up, and a whole slew of friendly squirrel-lovers manning a message board helped me get the little guy protected and warm so it didn't die overnight. (I'm not kidding - I was using a heating pad and a shoebox, and I did it all while being safe and not touching any wounded animals.)

I unsubscribed from the board after the incident, but every year I still get a birthday message from them. It makes me happy to think of all those squirrely folks out there doing what they love, sharing this totally niche thing. A little like the DOC, right?