Friday, June 30, 2006


OK, this week I turned in my study pump-and-continuous-monitor, started using my new DexCom, started Symlin, went back to my old pump, had it break two days later, and am now using Lantus and a Novolog Jr pen until my replacement pump shows up on Saturday (right before the big family party at my house…) Busy, busy, busy.

I was going to jot down some of my first impresssions/pleas for improvements on the various hardware I’ve been using, but I left my notes at work, and I’m not going to be back in there until Wednesday, when I can hopefully come up with a more in-depth analysis of my pros/cons of the two continuous monitors I have used…

So instead, for today I’ll jump onto the Symlin-starters bandwagon and add my comments. Let me say that having a continuous monitor does a lot for my piece of mind, from trying the new drugs to guestimating the seldom-used back-up plan…

1. My dr’s office started me out on 2.5 units of Symlin with half my regular insulin dose. Believe it or not, for dinner this was perfect. I watched my BG on the DexCom arch gracefully up about 40 points and then back down, over the course of three hours or so. We still want to increase the Symlin, but I’ll have to cut the dinner insulin back to a quarter my regular dose.

2. Lunch seems to be better right now with about 80% of my insulin bolus plus the 2.5 units of Symlin.

3. Breakfast still sucks, even with 80% of the bolus dose. Tomorrow we try 100%, then scale it back on Sunday when I up the Symlin to 5 units.

4. I wish Symlin came in a pen – or that I could use it to fill some Novolog Jr cartridges. Symlin people – are you listening?

5. Even better, any plans to test out Symlin mixed with insulin? Maybe for people who’ve already done the ramp-up to a standard dose…

6. I haven’t experienced any nausea, or appetite issues. The theory is by starting out on a really low dose and ramping up gradually, your body will be less shocked into nausea. I hope so. Haven’t noticed any changes in my feeling full or snacking, either. Which is fine by me.

7. Symlin makes my continuous monitor graphs look more like a “typical” T1 reaction, instead of the near-vertical ups and downs. Or at least it did when I still had access to a combo bolus, which is pretty damn hard to do with a syringe (you push it veerrry slowly…) It seems to smooth stuff out overall, even at the lowest dose. We’ll see what happens when I’ve worked up to 10 units….

Friday, June 23, 2006

24 hours of being me

Thursday 10:48 am (this "day" is not starting when I wake up because I'm pretty much a zombie then). I'm sitting in front of the computer at work. My pump beeps to remind me it's been 2 hours since my last bolus. I was 277 after breakfast for no discernable reason so I took 1.6 units the pump said I didn't need [3.1 to correct, 3.9 still active]. Sensor says 192 with a single down arrow. Study meter says 145. Val 1, diabetes 0.

10:55 am. Bathroom trip. Check pump tubing from where it enters my leg back to pump, looking for air bubbles. Thought I'd seen a half-unit sized bubble last night near the pump, but now it's nowhere to be found. Maybe that explains the breakfast high, or at least part of it.

11 am Meeting. Bring meter and juice.

11:30 Discretely reach down and hit button on pump to display sensor reading. Glance down. 136. That's 60 points lower than last time I tested, where sensor was about 50 points higher than fingerstick. Even if it's still 50 points off (not likely as things should have slowed down), that would put me at 86, still ok.

11:40 Repeat push and check. 132. OK, we're fine, not moving much at all.

11:55 Meeting ends. Get lunch from cafeteria, whole wheat sandwich (26), salad (0), cookie (16?), and water. Sensor says I'm 120, UltraSmart says 98. Pump bolus estimate is 4.2 units. I usually eat an extra 15g carbs or so and still go low if I'm doing my standard 3-mile walk at lunch, but today I'm running errands. Go for 4.4 units, split half now, half over 30 minutes.

12:15 Heading out to store. Check sensor - 106. But, it hasn't caught up with my food yet. I'm fine.

12:30-1pm During errands, periodically check sensor using same technique as in meeting. 140 with 2 up arrows, 138 level 10 minutes later; 126. Hmm, maybe I should have taken less insulin. Decide I'm OK to drive back to work without testing.

1:55 - my post lunch reminder. Sensor: 114, UltraSmart: 119. Yes! Now, I should be OK for most of the afternoon.

2:15 - cup of tea with milk. No bolus.

2:30 Sensor 120. I typically (but not in the last 2 days) drop between 50-175 points on the way home. Better keep an eye on numbers, since I may have to eat at 3:30 to be able to leave at 4.

2:50 Sensor 128. Great, we're level.

3:09 Sensor 138. Still good.

3:30 I've got my "turnaround" feeling, like I'm in an elevator that's gone down unexpectedly. Sensor: 132. UltraSmart: 101. I don't want to eat too much, but I don't want to go low on the way home either. Break off two squares of my emergency dark chocolate bar, figuring 7 grams of carbs with fat should digest slowly just over the time I normally drop.

3:45 Sensor: 124. Uh, oh. Let's wait a few minutes and use meter.

3:51 Sensor: 116. Nuts! UltraSmart: 101. Still. Decide to drive home without further snacks. School ended today, and my mother in law is watching the kids, so I don't have to pick them up, making my drive less than 25 minutes instead of 90.

4-4:30 Periodic checks of sensor on the drive home show me steady around 120. Val 2, diabetes 0. Go chocolate!

5:20 Supper is ready. Sensor: 114, UltraSmart: 80. Perfect. My mother in law has made us a batch of pasta fagiole, with directions to add the pasta to the beans and sauce at the last minute. I nuke up leftover brown rice instead of pasta for me, and have sauce over that, with a small glass of red wine. Yum. My guess is 48 g carbs, I take pump's recommended 4.0 units, 50/50 split over a half hour.

5:40 Sensor alarms low, 84 with one arrow down (I set it to 100 to catch lows). Ultra smart says 90. I've just finished eating, so I should be fine. Dig up the flyer for the summer camp orientation tonight and discover it starts at 6 and serves food. So I guess we didn't really need that supper, except it was better than hot dogs. For everyone. Pile kids into car and head out. My husband drives, as he usually does when we both go out together, even before diabetes.

6:15 - 7. I have a plate of salad, two oreos, and a cup of diet pepsi at the picnic. Bolus 0.7 units for 16 grams without testing or checking the sensor.

7 pm Back in the car. Sensor says 146. We drive to supermarket with kids.

7:50 In checkout line, better look at sensor. 194, just on the slope down. Fine, no problems. Get kids ready for bed.

8:41 post-bolus alarm. Sensor : 136, StudyMeter: 141. Great!

9:12 Sensor is level at 138. I usually drop at some point before midnight. Let's try 15g dark chocolate again, no bolus. Check tubing for bubbles now because I won't remember in the morning.

11pm. Sensor still level at 140. StudyMeter: 136. Perfect. Go to sleep. Val 3, diabetes 0.

5am Friday. Alarm clock goes off, waking me from a dream that I'm low and can't find any food. Not a good sign. I'm also bathed in sweat, and we have central air: Not a good sign, either. Hit the snooze and reach for the UltraSmart. Pop the cap off in the dark and try to slide a test strip into the little notch in the meter. Can't get it in. Try using the backlight on the pump. Still can't get it in. This, too, is Not A Good Sign. Give up and flip on the bedside lamp, discovering the reason I can't get the strip in is that there's still an old one in there. Sensor says I'm 106. UltraSmart: 119. Did I bounce? Dirty finger? Stress of trying to get the frigging strip in? Or is that the real reading, and dreams of being low were just that, dreams? The cat has curled up on top of my pump. Pull the sheet up and shut off alarm clock.

5:30 am pump low alarm (cat has moved): 96. UltraSmart: 97. Get up, decide to unplug for the shower. Feed cat. Usually I wrap the pump in a ziploc freezer bag and take it in with me, but usually I'm a lot higher than 97 too. Val 4, diabetes 0. Shampoo, removing AUTS (another used test strip) that has somehow entangled in my hair.

5:50 shower over, hook pump back on and get dressed. Sensor did not lose signal when I showered, says I'm 90.

6am sensor low alarm. Turn it off but don't check.

6:15 make breakfast. Sensor: 98, StudyMeter: 121, UltraSmart: 114. We're all in sync, good. Have a Thomas' mini-bagel (24), milk(13), and cream cheese (let's try 5). Take pump's recommended 7.0 units, split 50/50 over half an hour as usual. Feed dog and kids, or at least perky, cheerful Number 3 Son, who wakes up at 6 with no alarm. Definitely not my genes there. Make decaf coffee to take with me.

6:30 ready to leave for work. Sensor: 122 with an up arrow. Fine.

7:05 am Arrive at work. I have my "turnaround" feeling. Sensor: 166, one up arrow.

8am. Bathroom, tubing check, look at sensor. 164. No arrows. Perfect. This was the same breakfast that took me to 277 yesterday, by the way.

8:10. Feeling a little sweaty. Could be the a/c. Low? After breakfast? Not likely. Check sensor: 170. It's the a/c then.

8:15 pump reminder. Sensor: 168. StudyMeter: 171. For breakfast, this is success.

8:40 Walk to cafeteria with my office mate. They do not have apple turnovers, my real weakness, so I just refill my decaf coffee and head back. Sensor: level at 170.

9:15 Sensor 134, two down arrows. Huh? I'll check with meter later..

9:30 Sensor 120. No more arrows. Probably fine, check later.

10am Sensor 102. Hmm. UltraSmart: 90. An hour and a half until lunchtime. Snack, or wait? I'll wait a bit and see what happens.

10:15 Sensor low alarm 94. So that's what happens. Don't bother with the meter, just eat a bit of lunch early. Except, didn't make a lunch today. Break into the pack of PB crackers, eat 2 (7g). Should be OK until lunch.

10:30 Sensor 90.

10:45am Sensor low alarm 78. Huh? UltraSmart 96. Crackers worked after all. I'm OK until lunch. Low successfully averted; Val 5, diabetes 0.

This was a good day. In fact, this was an extremely good day, the kind of day I only have every couple of weeks. The sensor and meters were in agreement, unlike last week, when the sensor said 160 and a finger stick said 30 (sensor never went below 85 that day). Or the night before last, when my BG wouldn't go below 350 for four hours, despite all the corrections.

This was the kind of day I hope I have more of. And that I probably will have more of, because although I hope and pray for a cure, realistically I know that when and if it comes, it will probably be for people who've just been diagnosed, who still have some beta cells left. That I may go the rest of my life like this, hoping for days when I "only" have to think about diabetes 46 times in 24 hours. Because I can deal with that, I really can.

But no little kid should have to.

Wednesday, June 14, 2006

Continuous Monitoring, Part 2

I have to turn in my pump-and-CGMS setup in two weeks. Which means I am back to my regular pump then. I can't go back to guessing, though. With all its problems, having the sensor still sucks less than not having it.

I have ordered a DexCom. I should be able to seamlessly jump from one to the other on the 27th.

Stay tuned for my comparison.

Thursday, June 01, 2006

The Hike from Hell

Sunday of Memorial Day weekend. Wanting to do something outdoors. Decide on a hike with kids and dog, including a picnic lunch on the trailhead before we start. The kids are good hikers, completing a 6 mile hike last fall with more energy than we had. So we decide on Hadley Mountain, a nice two-hours-each-way hike with a fire tower at the top for the boys to climb, roughly 90 minutes from home.

My husband goes out for a quick shopping trip for hiking goodies and breakfast while I pack. My waking BG was 123 and was still flat around 2 hours later when he arrived with the breakfast. I ate half a cheese danish and half a glazed donut, figuring my best guestimate for the carbs minus a bit, as we’ll be exercising. We eat and get in the car.

I’m wearing my commando-dork outfit, an LL Bean fly fishing vest with every pocket stuffed: meter, extra strips, new infusion set, four juice boxes, pb crackers, gorp, spare pump battery, sunflower seeds, etc, etc. Plus a fanny pack with the digital camera, dog treats, and two water bottles, one for me and one for the dog. Number One Son (age 11) and Number Two Son (9) carry their own backpacks with water and snacks, and my husband has another with the rest of the snacks, binoculars, bug spray, sunscreen and water for him and Number Three Son (age 6). It’s surprising we even manage to get out of the house.

As we’re driving my sensor high alarm goes off. I ignore it for a bit because I just had the danish, which I know is going to shoot up there. Within 15 minutes it changes its estimate from 220 to 300. Uh-oh, better test. 358. Ugh. Well, still got over an hour before the hike. Three units should do it.

11:30 am - arrive at the trailhead, unpack the picnic, test again. 302. WTF? OK, just half a unit more. No lunch for me, just that diet ginger ale. We coat the kids and us with sunscreen and bug repellent and hit the trail. We see a bunch of tent caterpillars crawling around. The dog amuses herself by eating them and then coming to me for water.

12:15 pm – Damn, it’s hot. Wishing I brought my hat just to keep the sweat from running down my face. Hmm, sweat: let’s test, just to be safe. 47. Oh, shit. Down 3 juice boxes, suspend the pump, wait ten minutes, eat a pack of pb crackers. 12:45 – gotta be better now. 60. All right, another juice box, a handful of dried apricots. Maybe two. Put the pump back on a low temp basal. Keep going, as Numbers One and Two Sons are way ahead now.

1pm. We reach the fire tower. The kids and husband go up. I hang out with the dog, drinking water. The sensor has me at 175. Test : 111. OK, I eat a few more snacks, make the temp basal even lower, and just hang out, relaxing. The kids get a certificate from the ranger in the tower. Number Two Son (the outdoorsman) goes up and down the tower five or six times, then starts exploring the summit with his brothers. I even climb up the fire tower (trying not to focus beyond the metal ladder as I’m afraid of heights).

2pm – shortly after starting back down, I start getting stomach cramps. Well, I’ve drank four juice boxes and a bottle of water. Time to find a little girl’s tree and let some of it out.

2:30 – it didn’t help. Still got bad stomach cramps. Keep walking. Only as we get to the wet, shady section of the trail, they move in. The tent caterpillars, having lured us into a false sense of security by crawling harmlessly along the path on our way in, attack. They rappel down from the trees by the hundreds, aiming for our faces. Number Three Son wants to hold my hand, but I can’t – I’m clutching my stomach with both of them, and besides if we’re two abreast, there’s no way to avoid the dangling critters. Even the dog won’t eat them now.

The cramps increase in intensity. I almost never have stomach problems, and the last time I felt like this, it was right before getting an epidural. Why the hell did I eat all those dried apricots?

The kids look upward and flip out. Literally thousands of the caterpillars are moving in for the kill. Looks like something from an Indiana Jones movie. I fully expect to see a few hikers dangling from the trees, caught by some caterpiller Shelob. Number Two
Son takes one in the face and screams. Husband tries to calm the kids by speaking calmly, and eats one. Twice.

They’re all walking way too fast. I check my BG again, 170, so the cramps are only indirectly diabetes-related. Damned juice boxes.

Number One Son grabs Two by the shoulders and propels him forward as a human shield. Two is shreiking, One is laughing – and suddenly it’s reversed, as a kamikaze ‘pillar hits One’s open mouth and he does some impromptu break-dancing. Lord, I wonder how this will look in their autobiographies. Our kids are never leaving the house again.

3:30 – kids are ahead with the dog, trying to find the end of the trail and our caterpillar-free car. Husband is walking with me, holding my elbow as I’m bent almost double. I brush three caterpillars from my hair, find one on each shoulder of the vest like some epaulets from a goddamn caterpillar army.

The stomach cramps reach their logical conclusion and I dash for the trees, ignoring the bugs, only hoping I don’t squat in poison ivy.

We make it to the car, climb in, and pass out the cookies, ice tea, etc, we’d left in the cooler. I eat one, then reach for my meter. 245. Correct and add in that cookie. Laugh each time a caterpillar splatters on the windshield.

It’s fifteen minutes to the nearest fast-food joint. While my husband goes in for a coffee, I dash for the ladies room and stay there. Then I make it all the way home, where I lock myself in the bathroom for two hours, and don’t even attempt to eat anything until some toast about nine pm.

The next day, two of the boys broke out in a rash that looked like the start of poison ivy. Luckily it faded after a day, only a reaction to the bug spray. The kids have developed a fear of caterpillars. The dog won’t even try to get in the car anymore. And me? Tomorrow Number Two Son and I leave for a weekend camping trip at Lake George.

We’re bringing hats.