Dr Jekyll and Mrs Low

It's d-blog day

2008-11-09T15:17:00.002-05:00

Back when I started blogging in Sept 2005 it was out of a sense of desperation. Was there anyone else out there who knew what I was going through? All the reading I had done on type 1 talked about blood glucose levels that behaved correctly as long as you counted carbs properly, exercised, and found your "patterns".

What a relief it was to discover the non-textbook reality: people whose BG refused to fall into predictable patterns, people to remind me that 2+2 almost never equals 4 in the world of diabetes, people who said the same things I wanted to say, only much more eloquently.

A big part of the reason I don't blog as often is that I am no longer so frustrated with this disease. And that is because of the comments, support, and writing of all of the other d-bloggers out there. Thank you all, and happy D-blog day!

Hanging out at the D.R.I

2008-10-26T20:25:00.006-04:00

Yesterday I had what was probably one of my all-time most frustrating D-days, but with the greatest people to hang out with. I got up at 4:30 (after 2 below-40 lows overnight) and was already rebounding high as I took the train down to NYC and the Diabetes Research Institute’s “Diabetes 2.0” conference. I did a small correction on the train (no breakfast yet, and I didn’t want to worry about being low while trying to find the conference).

I got to the conference just as the first speaker was about to begin, grabbed some breakfast, elbowed my way to a seat between Allison and Kelly… and proceeded to spend the next 22 hours fighting against The High that Would Not Die. You’ve heard the expression “glass ceiling”? Well, this was a glass floor. I passed quickly through the “maybe-I-underestimated” and “just-bolus-again-might-have-been-an-air-bubble” stages, while my BG hit the 300s and would not go down. I could see the nice little dotted-line high threshold on my Dexcom, and soon rage bolus followed rage bolus as I kept trying to tap, stomp, and finally jackhammer my way back through the glass floor into somewhat normal BG readings. I mean, if you can’t risk a low by stacking insulin sitting at a table with a bunch of Type 1s, when can you do it?

But the amazing thing about the day was, I was not alone. Really, really, not alone. While I was fuming and running through the whole troubleshooting checklist (can’t be the site, I was low all night; basal is at 180%, 5 units on board, why the hell am I still 280) Kelly next to me was doing the same thing. While the mom in one session was talking about being worried that her son would be over-bolusing for highs while away at college, I was attempting, unsuccessfully I need not add, to over-bolus myself back down. When Bernard complained he had been above his Dexcom’s high threshold all day, I knew exactly how he felt – we even had the same threshold set! And when Dr. Rappaport asked how we react when we see a 300 on the meter, I had just seen a 304 on mine. And Kelly’s quick response of “W.T.F?” was exactly how I felt. Kelly, you are my new hero!

Other people have written about how great it is to get together with other Type 1s, other people who really “get it”. I can’t agree more. If I had been home, I would have been in the throwing things and swearing stage. Instead, we were laughing, hugging… and still swearing. Let’s face it, diabetes is pretty damn frustrating sometimes. And that’s why it was so great to spend a day with the people who “get it” – with the bloggers I am always surreptitiously reading from work: Amy, Bernard, Scott, Allison, Gina, LeeAnn, Kelly, Karen – and anybody else I forgot. Thanks guys, for turning a crappy BG day into such a great time!

Oh, and that high?

After a day with no fewer than nine correction boluses, doubled basal rates, and a 3am site change by the light of my dex did nothing it finally faded away - of its own accord - around 9 the following morning. W. T. F.?!?

Oh, for crying out loud!

2008-04-14T18:25:00.004-04:00

Even though there is another blog post I’ve been meaning to write for weeks.. um, months … now, in honor of Raise Your Voice Day, I figured this one would be more appropriate. I’m not going to do a “type one 101” session, as you can find many good examples here at Kerri’s blog. And, in previous posts I’ve covered my diagnosis, a 24 hour log of life with diabetes, and a short humorous summary of the impact of this disease. So for today, I will instead write about being a Type 1 in a world trying to cut Type 2 costs – fun with health care chronic illness “support”. My snide comments on the Q&A will be in italics, their questions in bold.

My new health care plan at work has this wonderful (this word should be dripping with sarcasm by the way) perk for people with chronic illness: your own personalized version of the “diabetes police”. Just what every diabetic needs – a “friend” to call you up and chat about your diet (don’t have one) your weight (doing fine, thank you) and remind you to test your blood sugar (I’m pretty compulsive about this - as my Number Three Son has observed “Just like the dog leaves black hair everywhere, Mommy sheds those little test strips”).

A few years ago I had inadvertently been signed up for one of these and hated it. The first call wasn’t too bad. Do you know what a hemoglobin a1C test is? Yes, I had one last week. Every three months, in fact. Do you know it’s important to keep your a1C below 6.0? Actually, given the huge fluctuations in my BG, like dropping 150 points in an hour for no reason, trying to get my a1c below 6.0 would probably kill me. I already have to treat two 50s a day to keep myself in the sevens. How often do you test your blood sugar? Ten times a day. [dead silence on the phone]. Then: “Oh. Keep up the good work then.”

From there on in, the calls got more annoying. Next was the 6pm call on Halloween. Yeah, sure, maybe it’s a tough day for diabetics, but it’s not like I’m sitting here contemplating eating the whole bag of Almond Joys. I’ve got three kids to get into costumes, a dog having a nervous breakdown (she’s scared of flapping robes but loves barking at the door) and I live in a development where my doorbell is guaranteed to ring no less than 150 times tonight. I do not want to discuss the exchange diet with someone who tells me if I don’t control my weight I could wind up on insulin.

After the second call, I started just saying “If you really cared about improving my health you would pay for my continuous monitoring system.” When the next year’s health care flavor showed up, I made sure they did not sign me up. I don’t return the messages left by various perky sounding people, offering to tell me of an exciting new benefit free with my healthcare plan. I considered issuing the callers a test to see if they even know there is a chance they could be talking to a person with type one. You know, “can you explain the significance of a positive GAD64 antibody test?”….but then I decided that took too much energy.

Last week at work, we were told that if we completed an online health survey, we would get a few bucks taken off the cost of next year’s health care plan. OK, so it wasn’t much money, but I figure they are at least trying to do something good, so I should play along. Even though I knew what I would be in for.

To start off, I resolved to be as honest as possible with the thing. Honesty is the best policy, right? I did fine with the gender, age, height, weight, non-smoker, non-drug-abuser, teeth-brusher, exerciser, seatbelt-wearer, single-partner, occasional-drinker questions.

The general state of my health? Well, excellent is out. Good, I guess. With one glaring exception. I smile a bit, remembering my favorite great-aunt saying "For the shape I’m in, I’m healthy."

Have I missed more than one day of work in the past month due to illness? Well, considering I had strep throat and a 102 fever the week before, spent two days home asleep… Yes. Yes I have.

Have I ever been told by a doctor that I had diabetes or pre-diabetes? Um. Yeah. How long ago? Within the past 5 years.

Have I seen a doctor since that time? What are you smoking? Yes. (duh!)

Has my doctor ever told me my blood sugar was high? Is a bear Catholic? Does the pope shit in the woods?

Have I tested my blood sugar in the past three weeks? Yes. They only ask yes or no, so I can’t put “over 200 times”.

What was it? Excuse me? My choices are “80-110”, “120-140”, “150-180”, or “above 200”. No “All of the above”? No “below 40”? No “above 400” (thank you, strep throat!) I decide in the interest of honesty here to go with my most recent reading. “120-140”.

OK, I am now booted out of the information collection stage and into the “diabetes for idiots” stage. I’ll try and reproduce the gist of the canned messages here, cleverly tailored with personal data from the collection stage inserted in so I know they really care…

Diabetes can be controlled through diet and exercise. Hooray! I’m throwing out my pump! You indicated that you exercise 5 times a week. You should exercise at least 3 times a week for 30 minutes. I should cut down? Exercise doesn’t have to be tough. Try starting with a brisk walk for 15 minutes and work your way up.

Maintaining a healthy weight is important also. Your BMI is 21. An ideal BMI is 19-24, so yours is in range. Dieting is an effective way to control your weight. Don’t get discouraged if you don’t see results immediately. Remember that controlling portion size is important to losing weight.

Your fasting blood sugar was 120-140, which is above the ideal range of 80-100. It’s also not a fasting BG, you morons, it was dead-on after lunch! You never asked for a fasting reading. Elevated fasting blood sugar can lead to crippling complications. Yes, I know that. This may be a good time to speak with your doctor about changing your medication to something that may more effectively control your diabetes. Yeah, fine. I’ll tell him I want to stop insulin and switch to something more effective. Should give him a good laugh.

Controlling your blood sugar is easy with proper diet, exercise, and regular doctor visits. Obviously written by a person without diabetes, any acquaintances with diabetes, or any knowledge of diabetes – of any type. Contact your doctor for more information and help and directions on how to manage this illness. Oh, yeah, maybe I should call every time my BG is out of range… Remember, it’s all up to you. And that is the exact kind of blame-the-victim bullshit that makes ANY TYPE of diabetes so hard to live with. It is NOT just up to me. But now I’m going to be haunted by those perky phone idiots who call during supper to ask what I weigh. I just know it.

The final page of the survey asked if we had ever been the victim of a medical error. And for once instead of a multiple choice we could actually write in 250 chars to explain. So of course I put in that my medical error was being misdiagnosed as a type 2 diabetic when I was type 1 and would die without insulin. I’m hoping if my answers get spit out to their telephone police, maybe they’ll actually glance at that and decide not to call.

If not, I’m compiling my own list of questions. Maybe I’ll ask my personal policeman what they weigh and how often they exercise. If they test their blood sugar at least eight times a day. If they have tested their basal rates recently. How many abstracts they have read on PubMed. If they have noticed different insulin sensitivity at different times of the day. If they re-evaluate their insulin to carb ratios periodically..........

The low-over

2008-01-18T12:27:00.000-05:00

My numbers have been wacky lately. I mean seriously wacky, not just diabetes-wacky. For the longest time, lunch has been my most stable meal. I eat my usual lunch, do a 3-mile walk, and my BG does one of two things: either climbs to 260 or so and drifts gently down to 110 by 3pm, or dips first, meaning an occasional juice on my walk, then climbs to about 180 before back down by 4. I can live with that. That’s about as close as I get to being predictable.

But lately, things have been weird. I always knew if I skipped my walk, I need to add another 0-1.8 units (your guess as good as mine). Lately, even doing that, with or without the walk I hit 300 and stay there. Plus, missing lunch (which I don’t do too often) meant my BG goes up to 350 by 1pm. So, I decided it was time to do some midday basal testing.

Skipping breakfast has never been a big deal, except that as Mr Thyroid finally dies off I find it really tough to miss that a.m. coffee – actually cappuccino (make it myself 4oz milk, 2 oz espresso with our little electric cappuccio maker – best $40 I ever spent). So I decide I will just have my cappuccino at 6:30, then around 10:30 I should be in range to start a lunchtime basal check. I still pack a lunch figuring I’ll eat it around 3pm.

Wake up at 80, look real good overnight, like between 70-120. I’ve been level overnight for two months. Have my drink, bolus the usual amount and head off to work. Waiting for the traffic light two intersections from my office, my Dex’s high alarm goes off, saying I’ve passed 180. This happens almost every morning at the exact same spot, regardless of how long between having breakfast and actually going out the door.

Ten-thirty rolls around, and I check my BG in preparation to starting the basal test. 390. O-kaay, no lunchtime basal checking for me. Plus, thanks to my body’s completely backwards wiring, I am ravenously hungry anyway. Eat my lunch, bolus and correct. BG stays steady a bit, then drops, then back up….basically for the entire rest of the day I’m between 200-250.

At ten pm I’m around 190 and drifting down very gently. I decide not to do any corrections and just fix things tomorrow morning. But, I’m not sleepy yet so I spent forty minutes or so working on my “The Times’ Fiendish Sudoku” book I picked up in London.

After a while, making no progress on my current puzzle, I decide to turn off the light and go to sleep. But, let me just check first and see how out of range I really am. Thirty-one. WTF? Did I do a correction and forget about it? And where the hell are my juice boxes – my bedroom stash is empty.

I go downstairs, pour myself a glass of milk, and chug it. And interrupt my husband’s piano practice to tell him I’m low. I should be using something quicker, but I don’t have my little green juicy-juice boxes and stubbornly wont consider those darn sidewalk chalk glucose tablets. After about 5 minutes, I have a second glass of milk. And one of my homemade molasses cookies. So I don’t go low again. Then, because they’re tasty, I have another. And another.

OK, I’ve just gobbled down like 50 g of carbs. Now I’m tired. My husband comes up and reads to me, to make sure I’m going up before going back to sleep. It takes an hour for me to break 60. At this point I assure my husband that I’m most likely headed for 400 but that I really just want to sleep now and I’ll fix it tomorrow.

The alarm goes off. I hit the snooze, grab the meter, and test. 74. WTF x 2??? I pull Dex from under the pillow. According to him, I never went above 100 all night. Unhook pump, shower, get ready for work, sit down for breakfast, retest. 78. Hmm. Have a real breakfast – toast and cappucino. Low alarm goes off. Hang out for half an hour until fingerstick shows my bg hitting 78 again, then go in to work.

At work, I feel like I am completely wrapped in blankets. Muscles ache, brain hurts, and I bumble through the day, feeling as though I’ve switched brains with the dog. At least, maybe the dog could make more sense of the code I’m supposed to be working on today.

At lunchtime I’m 94. I eat, bolus lightly, and take a walk, hoping to clear my head. Nope. All I can think about is going back to bed, lying down, and sleeping.

Somehow I make it through the day – with a juice box at 3:30 as I dip down to 64 – and head home. Bed. Bed. Bed.

I call Number One Son over, explain to him what needs to get done for dinner, and go upstairs. Bed. Bed. Bed. I check my BG – 96 – and fall asleep instantly.

45 minutes later, my husband wakes me up for dinner. I feel about one thousand percent better. I can keep my eyes open. I go down to eat, do a fingerstick. 46. Hoo, boy.

By the time dinner is over (juice, wait for BG to come up, dinner + extra 35g carbs so I don’t dip again) I am back wrapped in my metaphorical blanket, too dull to think of anything. I stand up. “I’m going back to bed.” It’s barely eight. BG 220.

Dex beeps at 1am. I’m 46 and drink juice (bedside stash has been restocked). Back to sleep, wake up at 90, go to work. Once again, high all afternoon and evening. I do no corrections, only bolus for the carb contents of meals. 224 at 11pm. Ignore it and go to sleep – last bolus 5:15.

I wake in the middle of the night, drenched with sweat and shivvering like mad. Check Dex; he says “LOW”. It’s 3:30, and I’ve been LOW for an hour. Flip to the 3 hour screen and see that BG went into free fall about 1am. I must have slapped the “below 90” and “below 55” alarms in my sleep. Wonderful. I feel much, much worse than the 31 two days ago. I know I should wake my husband, but all I can think of is that he’ll turn on the light, and I don’t want the light on. Poke straw into juice box in the dark, slurp, toss, roll over, sleep.
When the alarm goes off this morning I’m 46. Great. Another juice. Wait. Shower. Get ready. No way am I driving in to work this morning. I feel like I’ve been beaten with sticks, then taken a few turns in one of those witch dunker things, into ice water. I’m achy and tired and miserable and not able to think.

I try to log in from home, but after about 90 minutes of bumbling around in the code, doing things like spending fifteen minutes trying to figure out where I can find the script that updates the version info file, giving up and emailing a co-worker to ask where to look for it, then getting the sudden brainstorm that maybe the code is inside the file named “update_version_info.bat”. That sort of thing. A menace to myself and any poor sucker stuck working on the same code base. And my brain is running through the same loop, over and over : “I’m tired. I’m cold. I want to lay down. I don’t like these lights. I’m tired…”

I check out Dex's nine hour graph and see a perfect "W" 220 - LOW - 55 (after 3am juice) - LOW - 220.

I give up, email my boss that I’m sick, and go upstairs, proceeding to lie in bed for two hours with my brain going “I’m bored. I’m cold. This bed isn’t comfortable. Too much light….”

At least it’s Friday.

Seven Random Things

2007-11-21T09:20:00.000-05:00

Sandra tapped me to join in.

To participate, one must:

Link to the person’s blog who tagged you.

Post these rules on your blog.

List seven random and/or weird facts about yourself

Tag seven random people at the end of your post and include links to their blogs.

Let each person know that they have been tagged by posting a comment on their blog.

I am what my husband calls a “binge gardener”. I will often spend entire weekends outside setting up new flower beds, planting trees and whatnot – then ignore the whole thing for months. I figure any plant that can’t deal with this kind of neglect doesn’t deserve a spot in my yard.

For our honeymoon, we spent ten months doing some low-budget backpacking through the Mediterranean: Italy, Tunisia, Greece, Austria, Germany, France, Spain and Portugal on a fellowship my husband won. I always claim I married him for the ten-month honeymoon. He always claims he married me for the extra four grand he got as a married student.

I once took a completely bizarre language course that taught seven languages simultaneously. To this day, I can still say “Hello, Fish-face!” in German, Italian, French, Spanish, Portuguese, Japanese and Arabic. This was after the honeymoon, when we were homesick for travelling and could not afford to go anyplace…

When I was little, my next-older brother’s nickname for me was “Grace”. This was because I was a complete klutz, and would fall down the entire flight of our non-carpeted stairs once a week or so. Surprisingly, I never once hurt myself doing that, though I would regularly turn my ankles just walking to school.

I really enjoy faux-finish painting. I started with the castle room, and just recently did this in our basement band room:

I am apparently a natural at ping-pong. Who knew?

I own a 1925 player piano that we just had restored. It’s the only way I’ll ever be able to play an instrument (see #4 above), and I’m sometimes found doing Singing Frog imitations while pumping away.

I don't know who hasn't been tagged, so if you read this and aren't tagged yet, consider this your tagging!

Val

Hugs

2007-09-21T13:00:00.000-04:00

So on Saturday I'm in the kitchen, trying to clean up the mess of us being a virtual single-parent family for a week, when Number One Son walks in.

"Mommy! Are you still radioactive?"

"No," I say, and he runs over and gives me a big hug. Now Number One Son just turned 13, and hugs really aren't his thing, so I hug back happily, glad for a bit of spontaneous cuddling.

Then he backs up, grabs his neck, and gasps, "Ahh! My thyroid!"

Wise@$$.

Because

2007-09-13T07:14:00.000-04:00

Because the first attempt to kill off my thyroid with radioactive iodine didn’t work.

Because it was an abyssimal failure as a playroom (As in I didn’t make the mess in here, Mom! times three).

Because that honking huge bed from my in-laws needed the proper room to set it off.

Because I’ve always wanted a window seat to read in.

Because we need more than one spare bed when out of town friends and family visit.

Because my BG never seems to do as well as when I’m coating myself in sawdust, dirt, or spackle.

Because my dad didn’t mind me borrowing all his power tools for months at a time.

Because if a hyperactive thyroid is giving me all this extra energy, I may as well put it to good use.

Because if I’m spending my second week of the year shut away in a room, I might as well enjoy being there.

Because when you don’t normally do caffeine, starting the weekends with an espresso makes you really productive.

Because if I do develop superpowers this time, I’m going to need a really cool secret hideout.

Because as a guest room it was just a place to collect clutter.

Because my husband got the basement for his playroom.

Because neat wall painting always escapes me, but I can make messy look pretty darn good.

Because if I’ve got a spare bedroom, I can do what I like with it.

Because our cat looks really good curled up on a window seat. (Don’t worry, he is not allowed in while I’m radioactive).

Because I’ve been a castle freak my whole life.

Because all three boys think it’s the coolest sleepover room ever.

Because it will probably always be a work in progress, but I wanted a fun work in progress.

Because that cute boy from high school English class, to whom I’ve been married for the past nineteen years, has many great qualities but is not an actual prince. (Though I hear real princes are pretty high maintenance, anyways).

Because Number One Son and his friends really like it as a place for playing Dungeons and Dragons.

Because last time I was locked in here, I got to play around with my sewing machine for a week.

Because I’ve collected really weird souvenirs over the years and needed a place to display them.

Because my elliptical really does look like a medieval implement of torture.

Because we always have more books than shelves to hold them.

Because barring a winning lottery ticket, I’ll never afford to live in a real castle.

Because if I made the whole house look like this, people would think I’m really weird, but one room practically makes me a medieval Martha Stewart.

Because if I’m spending a week locked away in a tower, it should look like I’m locked away in a tower.

So What's Not to Like?

2007-09-12T11:33:00.000-04:00

I said I would post more about using the new Guardian instead of my Dexcom Seven. Here it is.

I would say the “honeymoon” with this device is over. I had originally thought that by setting the low threshhold to 100, I could bypass the Guardian’s rather crappy performance on lows. So I have. And most of the time that is OK, I get a low warning that I am 100 or 95, and test and see that I am really in the 70s, so I treat if it’s dropping and forget about it. But that doesn’t always work. Today, for example, I was working and my “Low Predicted” alarm went off. It said I was 120 with one arrow down. I tested and got a 60. Quite the difference there.

Still, though, it caught it. So that’s not the most annoying thing.

The most annoying thing is when a sensor just flakes out and your readings either launch skyward or drop like a rock. Sure, my Dex has done this a handful of times in the 15 months I have had either the STS or the Seven. But I have been using the guardian a little over two weeks and it has happened 3 times.

The first time I was at work. It was the middle of the morning and I had been drifting down after breakfast when I suddenly got a predicted high warning at 170. I tested and was 125. A few minutes later Guardian said I was 190. Then 225, then 300 in the next half hour. I tested again. 122. I entered this value on the Guardian, which by now had me in 400+ range, and promptly got a CAL ERROR and a request for a new reading. Now, when Guardian thinks you have a CAL ERROR and asks for another reading, it doesn’t really mean it. If you give it that second reading you’re begging for a second cal error and a bad sensor. So instead you wait for your BG to level out if it was weird, and don’t give it a new reading for an hour or so.

So I waited. And waited. Ate lunch, went for a walk, tested two hours after lunch and was 170. OK, let’s tell Guardian. Cal Error. Bad Sensor. Since I’m in a study, I can’t just restart, I do need to change the sensor. Which is at home in the fridge. Big PITA.

The second time, I was in bed. It was not quite one in the morning, and I got a predicted low warning. I tested and was 130, right where I want to be at night. A few minutes later a high warning. Then a predicted high warning, then a bunch more high warnings and assorted beeps. I was never over 160 on the meter and pretty level. Again I tried a sync up, and got a cal error. Now it was also beeping for a “Meter BG Now” that I wasn’t going to give it. Needless to say, after that first alarm, I never fully got back to sleep. At 5:15 I finally got out of bed, flung the damn receiver into the closet and shut the door. I could still hear its muffled complaints in my 30 minutes of sleep before morning. I had to call in sick to work that day because I just couldn’t function.

At 9am I let Guardian out of his prison and let him Find Lost Sensor. He happily chugged along for the rest of the time with no problems.

Then a few days ago it happened again. Only this time Guardian thought I was low. I was 156. After an hour or so of bogus below-40 readings, that I refused to dignify by trying to sync up again, I locked Guardian in his closet and went downstairs. Several hours later he was paroled and again behaved himself.

So now I’m thinking that clunky software and carrying a goddam potato clipped to my belt might be a small price to pay for actually getting to use the darn sensor when I want to. If I’m at work when Guardian flakes out, how do I get him out of range for long enough to smack some sense into him? Ask a friend to keep an annoying beeping or vibrating device in their office for a few hours? Put him inside some kind of Faraday cage to block out the signals? Leave him in the ladies room with a “please don’t steal me” post-it note? Or just give up and go back to Dex, who flakes out every few months not every few days.

I’m done with this study in a week and a half. I find now that I’m looking forward to my old clunky but reliable Dex.

A new CGMS study

2007-09-06T20:55:00.000-04:00

Note - I wrote this post overa week ago and hadn't gotten around to downloading the pictures to go with it...

Yes, just a few weeks after upgrading to the Dexcom Seven, I am participating in yet another CGMS study, this one using the Minimed Guardian system. Unfortunately my Dex was in a Day 11 fade-out when I got the new system, so I don’t have a good comparision, but I may try to put a new Dex 7 sensor in at the same time I put in my last sensor for the study.

In the meantime, here’s some comparison pix (please excuse the quality I’m not at my best first thing in the morning):

The sensors (side view, I know they look a bit beat up – sorry) Yes, the Minimed really is that much thicker)

With transmitters

Transmitters again

Receivers

Now, having been completely exasperated with the MM product in the first study I did, I’m going to revisit some of my original concerns.

Accuracy at BG readings under 100: I still feel the Dex is more accurate here; but I currently set my low threshhold on the Guardian to 100, meaning that it sets off the “predicted low” alarm when I’m around 85 in real life. So, it’s something I can work around.

Features – by this I mean how much can you customize the alarms. The Guardian wins hands down, having not only a “crossing threshhold” alarm, but alarms for impending highs or lows, and for rapid rise or fall rates, as well as a “snooze” feature (meaning beep again in 20 minutes if I’m still low, or 2 hours if I’m still high), and a regular alarm clock feature. Everything is configurable. Dex only allows you to set the low and high alarm threshholds.

Software – OK, I don’t actually get to use the software until the download at the end of the month, but I was able to look it over at the doctors office, and it is much better than the Seven’s reporting software.

Added bulk – I had been resigned to the Dexcom’s big bulky oval, but didn’t realize what I was missing until I have the Guardian’s reciever, which is basically a minimed pump with the pump guts taken out. Very easy to slip into a pocket, while the Dex reciever is too large to do much except clip on a belt.

So now, having lived with Dex for over a year, I’m starting to think about more than just the accuracy. I mean, I can easily work around the Guardian’s flaw by setting my “low” level to 100. But how to you work around lame software, limited configurability, and the bulky receiver? Next year when my pump goes out of warrantee it might be worth it to go for the all-in-one system. I’m tempted.

Dexcom, are you listening?

Next post - I remember what irritated me so much about MM in the first place....

Duelling Dexcoms

2007-07-30T19:20:00.000-04:00

Copying Bernard, I'm posting a picture of my duelling Dexcoms. This shows some data from this morning, after spending all of Sunday doing yard work. The new Dexcom Seven is on top.

This shows me a couple of things:

They really do track quite well - at one point I got low alarms 30 seconds apart on the two recievers.

The new Dexcom Seven is a little more cautious about jumping up at the first few readings after drinking my juice. Actually I had just tested at 102, so both were quite reasonable. When I finally stopped treating them as alternating snooze alarms and actually looked at the screens this morning, one said 61, the other said 62, and my meter said 61. Can't get better than that!

Obviously, I need to quit my job and become a landscaper. I never see nice in range lines like that after a day of programming. And you don't want to know what I was eating Sunday night, but it did include bolus-free eclair, cookies, and lemon Italian ice - and my yard looks great.

There has been a huge gap in my posting. Life intervened - busy at work, big vacation (took the family to Edinburgh, York and London for 2 weeks), visitors and family parties. I still may be getting another shot at superpowers depending on my bloodwork mid-August. If so, maybe I'll have some time to post ; )

You would think I’d at least get superpowers

2007-04-17T13:15:00.000-04:00

I mean, that’s how it happens in the comics. Radioactive spiders, gamma ray exposure, you name it. So there was always the hope that the pill full of radioactive iodine I swallowed for a hyperactive thyroid could have imparted some kind of special ability.

Hey, it could happen.

Just think of the possibilities here. The ability to regrow beta cells, or corral and destroy the errant T-cells that have already taken down two organs. Being able to wave your hand over a plate (I admit, I do this) and know instantly the precise carb count of everything on it (OK, so that part seldom works).

Or better yet, being able to see different paths 4 hours in the future to know the precise insulin dose you should give yourself to avoid that nasty 327 after lunch.

How about being able to keep you blood sugar level, no matter what you eat? Or turn a chocolate chip cookie into a “free food” just by looking at it? Without changing the taste or texture of course.

There were just so many things that could have happened.

I guess I just wasn’t specific enough about which organ I wanted to regrow.

Because, in the nine weeks since the radiation treatment, my thyroid output has more than doubled. In fact, if it doesn’t die off soon, we’re going to have to try it again.

This time I’ll be hoping it’s the pancreas that regenerates.

Late Night Conversations

2007-01-29T15:30:00.000-05:00

A play in six acts

Cast of Characters –

Val – an increasingly sleep-deprived, mother of three, type 1 diabetic
Pump – an Animas IR1200+ insulin pump, who usually sleeps in the pocket of Val’s tee shirt
Dex – a DexCom STS continuous blood sugar monitor, whose job it is to make sure Val’s blood sugar doesn’t go too low or too high overnight. He is set to alarm at values below 80 or over 200. He usually sleeps under Val’s pillow.
Clock – your basic digital alarm clock, set for 5:30 am on weekdays, 7 on weekends. Lives on Val’s bookcase headboard next to a large pile of Juicy Juice 100% apple juice boxes (15 grams carbohydrate each) and a scattering of used test strips.
Meter – a one-touch Ultra Smart blood sugar meter, whose job it is to provide real data if Dex is getting flaky. He sleeps on the headboard between Clock and the juice boxes.
Various and sundry other characters, whose short-lived appearances should be self evident.

Act I

Thursday night – or very early Friday. We can assume that Val went to bed around 11pm, after first checking that both Meter and Dex agreed that her blood sugar was about 140.

1:30 am

Dex You’re low.

Val Hmm? [reaches under the pillow, jabs Dex, who shuts up. Goes back to sleep.]

2:15 am

Dex You’re low.

Val Hmm? [reaches under pillow, jabs Dex again. Then thinking better of it, grabs Meter off the shelf. Pops cap, inserts test strip, pricks finger without turning on the light. Then pulls Dex from under the pillow and hits a button so he lights up.]

Dex You’re low. 68, you know. [Val uses light on Dex to guide her finger to the appropriate spot on the test strip. Meter begins his countdown]

Meter 5 – 4 – 3 – 2 –

[Dex goes dark]

Meter 1!

[Val pokes Dex again, twists him so light falls on Meter]

Meter 46.

[Val stuffs Meter back on his shelf, tucks Dex under his pillow and grabs a juice box from the shelf. Pulls off straw, unwraps it, and finds the little foil dot in the dark. Sucks down juice, tosses box off side of bed. Sleeps.]

2:21 am

Dex You’re low.

Val I know that, let me sleep. [Jabs Dex and rolls over]

2:32 am

Dex You’re low. Really, really low. Like 40.

Val I know that, I just drank the juice. Leave me alone.

2:40 am

Dex You’re low. [Val hits him]

3:28 am

Dex You’re low.

Val I can’t be low.

Dex You’re low.

Val What time is it, anyway?

Clock 3:28 am. [Val grabs Meter, repeats testing procedure.]

Meter 5-4-3-2-[pause as Dex goes dark]-1. You are 54.

Dex (smugly) told you so.

Val Shit! [Stuffs Dex and Meter under pillow, grabs another juice box, then has to pull Dex from under the pillow to light up because she can’t find the spot to put in the straw.] How the hell did that happen, anyway?

Dex Last juice box brought you up to 134, then you coasted back down again. Drink your juice.

Val’s husband (sleepily) You all right?

Val Yeah. Just low. I’ve got juice.

Val’s husband You sure?

Dex We’re fine. [Val’s husband rolls over and returns to blissful sleep. Val finishes juice, tosses box to the floor, sleeps]

3:36 am

Dex You’re low.

Val Will you shut up! I just drank the frigging juice. [Jabs Dex and goes back to sleep]

5:30 am

Clock Time to get up. [Val reaches under pillow, jabs Dex]

Dex Hey!

Clock Time to get – [Val reaches up to shelf, slaps Clock]

5:39 am

Clock Time to get up. [Val groans and sits up. Turns off Clock and reaches under pillow]

Val How’d we do last night?

Dex You are 124. Nice and steady after that second juice.

Val Is that right? [tests]

Meter You are 124.

Dex See?

Act II

Friday night/Saturday morning. Scene – the same. Val was about 86 at bedtime, so she had a glass of milk and a cookie before going to bed at 11.

11:57 pm

Dex You’re high.

Val I know that, I just had a snack.

Dex But you’re high.

Val Yes. Shut up. I’ll be fine in a half hour or so. We don’t want a repeat of last night. [pokes Dex]

3:12 am

Dex You’re high.

Val I’m not low, leave me alone. [pokes Dex].

3:20 am

Dex I said you’re high. High, not low.

Val What was that? [Pulls Dex from under the pillow and hits a button].

Dex 278

Val Oh, man! [Gets Meter from his shelf]

Meter 5 – 4 – 3 – 2 [pause for light] – 1. You are 174.

Val 174’s not bad. And I drop in the morning anyway. [Pulls a wire from Meter’s case and plugs it into Meter and Dex. They converse]

Dex Maybe you aren’t that high after all.

Val Go away, Dex.

4:46 am

Dex You’re high again.

Val Wha…. [Val grabs Dex from under the pillow and hits a button]

Dex You’ve been steadily climbing for the past hour. 172 to 265. [Val hits button again] You did it twice in the last three hours. [Val hits button a third time] All night long. You’re high.

Val Are you sure? [She frowns at the nine-hour graph, blearily realizing that she is seeing The Dreaded Scallops, a pattern she has recognized before. She reaches down and finds where Dex’s transmitter is clipped to the sensor on her leg and presses on it. A click is heard.] Aha!

Dex I’m only as good as my information, you know. So what is your blood sugar? [Val pulls Meter off his shelf, puts test strip in slot, pricks finger]

Val’s cat [jumping on bed] You’re up! You’re up! Feed me. [Val pushes cat off bed. Cat jumps back up] You’re going to feed me, aren’t you? Even if you aren’t I just love you. I’ve told you that, right? And my buddy Meter. Can I have the little bottle of strips? Please? It shakes and it rolls -

Meter Get him off me! [Val picks up cat, drops him off side of bed. Now has cat fur stuck to blood drop, so has to prick a different finger.]

Meter Any day now.

Dex Don’t bother her, it’s been a rough night. [Second finger refuses to bleed, Val pricks a third]

Meter 5 – 4 – 3 – 2 – [pause] – 1. You are 143. [Val finds wire for Meter, plugs him and Dex together.]

Dex. Oh. 143. My bad. [Val returns Dex to his pillow and stuffs Meter, wire still dangling, on the shelf. Sleeps]

7 am

Clock Time to get up. [Val slaps him] What?

Act III

Saturday night – early Sunday. Scene – same. As with Wednesday, Val had a snack – a glass of milk - at bedtime because her blood sugar was 74.

2:03 am

Dex You’re high! [Val hits him]

3:16 am

Dex You’re high! [Val pulls him out from under pillow, hits a button] You’ve been high all night. Go ahead, ask Meter, he’ll back me up.

Val There is no way one glass of milk can bring me from 74 to 300. Leave me alone.

Dex But you’re high. Ask Meter, if you don’t belive me.

Meter Leave me out of this. You don’t want her getting mad. Remember what happened to Pump.

Pump What?

Dex Not you. The last Pump. Three weeks ago.

Meter Dropped on the bathroom floor. Cracked the screen straight across. It was awful.

Pump Ooooh!

Meter So watch your step.

Dex (worried) She wouldn’t do that to me, would she? I’m out of warrantee, and out-of-pocket besides. [No one answers] Oh, all right. She is high, though.

7 am

Clock Time to get up.

Val [reaching under pillow] Dex?

Dex You’re high. Like 400 plus. I can’t count that high.

Val Shit. [takes meter from shelf, tests]

Meter 5 – 4 – 3 – 2 – 1. You are 374.

Val What the hell?

Dex I tried to tell you, but you just wouldn’t listen.

Val What do I do now? [She wiggles the little button on her stomach marking Pump’s infusion set, thinking he’s disconnected. But it seems fine]

Pump Well, for starters, let’s try three and a half units of insulin. You changed the site yesterday, so it should still be good.

Val All right.

Pump And you could try listening to Dex. [Dex preens]

Act IV

Sunday. It is bedtime. Val has just tested.

Meter You are 157.

Val OK. Good. No snack tonight. Now, I have work tomorrow. You’re going to let me sleep, right, Dex?

Dex I’m just doing my job. Talk to the pancreas. And the thyroid, too, he’s hyper.

Val I mean it, I really, really need some sleep. No interruptions.

Meter (whispers) Bathroom tiles! [Dex gulps]

3:09 am (now Monday)

Pump Uh, Val? [Val reaches under pillow, slaps Dex]

Dex (sleepily) What?

Pump Val? [This time Val hits the shelf.]

Clock Ouch. Hey, what’s the big deal?

Pump Val? [She pulls pump out of his pocket and looks at him incredulously] Umm.. I just thought you should know. I’ve only got 20 units of insulin left in my reservoir, so you’re going to have to fill me by about suppertime tomorrow.

Dex Asshole.

Val What time is it anyway?

Clock 3:10. [Val puts Pump back in his pocket and looks at Dex.]

Dex You are 145. Perfect. And I’d like to point out, I didn’t wake you up. [Val puts Dex back under the pillow and sleeps]

5:30 am

Clock Time to get up. [Val hits him]

Act V

Monday night/Tuesday morning. Scene – same. Val has gone to bed at 10:15, exhausted.

11:31 pm

Dex You’re low.

Val Leave me alone. [Hits him].

12:04 am (now Tuesday)

Dex You’re low. [Val hits him again]

12:13 am

Val’s bladder I gotta go!

Dex See! I told you you were low. [Val pulls Dex from beneath the pillow, tucks him in the pocket with Meter, and heads for the bathroom]

Val’s cat You’re up! You’re up! Feed me. [Val pushes cat out of bathroom and shuts door]

Dex You’re low, you know. You really should check with Meter when you get back to bed. I think you’re 58. [Val finishes, opens bathroom door]

Val’s cat You’re back! Now you’re going to feed me. [Val pushes cat into bathroom and shuts door]

Val’s dog What’s going on up there? Are you feeding the cat? Because if he gets fed, I get fed. [Val ignores dog and goes back to bed, this time switching on the reading light]

Meter What’s up? Oh, a check. 5 – 4 – 3 – 2 – 1. You are 53.

Dex Told you. Have a juice box. [Val drinks juice, turns off light, goes back to sleep]

12:27 am

Dex You’re low! [Val hits him]

12:46 am

Dex No, I mean really low! [Val hits him again]

1:04 am

Val’s bladder I gotta go again! [Val gets up, walks to bathroom]

Val’s cat I’m saved! You’re here to feed me, right? [Val blinks at Dex]

Dex You are 55. Talk to Meter.

Val I can’t be low again, after the juice.

Dex Didn’t work. You just went lower.

Val Oh, crap. [Back in bed, Val reaches for Meter]

Meter Again? Somebody have a loose transmitter?

Dex Up yours! [Meter counts down]

Meter You are 39.

Val Shit. [Grabs another juice box]

Dex I tried to warn you, you know. If you’d just listen –

Meter Yeah, it’s the little boy who cried high. [Val ignores the bickering and sleeps]

3:29 am

Dex You’re low!

Val OK, I believe you. [Drinks another juice].

Val’s bladder You really are, you know. Or maybe it was all that juice.

Val I know, I know. [puts Dex in pocket, goes to bathroom, shuts cat in closet]

5:23 am

Dex You’re low!

Val You have got to be joking.

Dex No. 61. Honest!

Val What time is it?

Clock You have seven minutes.

Meter You are 64. Drink some juice.

Val Arrgh!

Val’s cat Um? Somebody? It’s dark in here…

Act V1

Tuesday night to early Wednesday. Scene – same. Val was 112 at bedtime and too tired to care that she should have had a snack.

5:30 am

Clock Time to get up! [Val reaches under pillow, hits Dex]

Dex Hey!

Clock No, it’s me. [Val stares at him]. It’s 5:30. You know, wake-up time?

Val Dex, how’d we do?

Dex Flat at 120, all night long.

Val You mean, we slept the whole night? It’s over?

Dex Don’t get used to it.

Quick, bring me an orange!

2006-12-16T20:17:00.000-05:00

My in-laws took the boys overnight last night, and we decided to go out to dinner. It was a spur-of-the-moment thing; we didn’t have much in the way of leftovers and were both frazzled from the long week at work.

I wasn’t worried; I had changed my site the day before, had a ton of insulin in my pump, had my meter and juice and all in my purse. Decided, in the light of recent news, to go eat something with chili peppers in it as a sort of salute to capsaicin.

I had been running in the low 200s all afternoon despite corrections, but wasn’t too concerned. This was just my thyroid getting jealous since the pancreas was getting all the attention. I’ve noticed before I work backwards to most “typical” Type 1’s – this apparently includes being hyper- not hypo- thyroid. So when things act up, it just randomly spits out some extra hormones and keeps my around 250 for 4 or 5 hours. My 4 hours was just about up, the latest correction would work, and I’d be back to normal by the time our food arrived.

Alas, wrong again. Still 250 when we sat down. Ordered a Pilsner Urquels on tap and nibbled a bit of bread, bolused 4 units and doubled my basal for 4 hours. Dinner arrives: 300. Eat the Cajun fish and a few tablespoons of spicy risotto. Despite the menu, this is an Irish pub; my beer comes in a pint, about 4 times as much as I normally have at one sitting, and I’m pleasantly buzzed. Maybe my site’s clogged. No problem, we’ll just finish eating and head home and I’ll take care of it there. Bolus another 5 units.

I check my Dexcom. 390. Yeah, like it climbed that fast in ten minutes. Restaurant is pretty tight quarters; I’ll just nip into the ladies’ room and swap out my site with the spare from my purse. Once in the ladies’ I test again. 390. Damn! OK, lets swap out that…site…Damn again. I’d transferred the spare infusion set to my evening bag for last weekend’s Xmas party, and hadn’t put it back. OK, another 6 units, and I’ll just ask for a doggie bag for that lobster risotto.

We head home. I run upstairs to check. 372. OK, forget the stupid site, let’s just inject 5 units and then change. Rip out the old set and inspect it carefully. No kinks or bends, nothing to show why it didn’t work. Which means I may actually have like 15 units of insulin on board. Probably not though. I check Dexcom; it shows me dropping. Sharply.

Oh, shit.

“Honey, you remember how to use the glucagon, don’t you? Just in case?” We’d done a practice with an expired set last year and he’d been nervous just injecting an orange – but since then I’d made him do my site change or Symlin a few times so he’d be used to sticking me (I’m snickering here) just in case he ever had to.

I dig out the glucagon kit from the bedside table. It expired in June. But wait, I know I picked up a new one; must be downstairs. We take out both kits, set the good one aside and take the expired kit and a Clementine from the fruitbowl. Practice time again.

“All right, you need to figure out what to do. I’m not going to be telling you if you really need to use it.” He flips over the kit and begins studying the label on the bottom. “The instructions are inside.”

He opens it up, takes out the folded glucagon-for-dummies sheet and starts reading.

“Um, honey? I don’t think you need to shake the bottle until you add the liquid – it’s just a tablet in there now.”

He growls just a bit and returns to reading the sheet. Needle in the bottle, squirt and shake, draw it up into the syringe.

OK, that takes a few tries, he keeps sticking the needle too far in and sucking up air. My tipsy self is finding this incredibly humorous.

Finally, the moment of truth. He pins the orange firmly against the counter with one hand, needle in the other.

“Throw it in like a dart, don’t hang on to the plunger. Great. Now just wait ten seconds or so, you don’t want to let it dribble out if you pull out too soon…” Yeah, I know I said I wouldn’t help him. I also promise not to back seat drive.

He waits, then pulls out the syringe. The orange erupts like a mini geyser, like a garden fountain with its single perfect arc three inches into the air. Our own personal “Citrusken Pis”, taking a leak on the kitchen counter.

I lose it. We laugh so hard we can barely stand up. We can’t even look at the real kit without giggling.

“Okay, honey, if my BG keeps dropping, just dial 911 tonight, all right?”

But we don’t need to. It levels out at a great 150, stays that way most of the night.

On driving a junker

2006-11-09T18:38:00.000-05:00

(This really is a D-related post, so be patient..)

I grew up in a family that bought only cheap used cars. So I’ve seen my share of real clunkers: the rewired toggle-switch ignition, the horn under the dash, the rusted out gas tank that could never be filled more than half full (well, it could be filled more, it would just run out until it was half full), the speedometer that always read 0 mph. When I was in grade school my dad even had a car that, if he stopped at a traffic light, he often had to open the driver’s door, duck under the side of the car, and hit something with a wrench before he could start moving again (don’t ask me what he did, I think it was something involving the clutch).

So when we were first married, our first car was a true junker given to us for free by my older brother. To be fair, he really thought we would just use it for a weekly trip to the grocery store, not 3 ½ hours of daily commuting in Boston (Callahan Tunnel or Tobin Bridge in a rusted out 1979 Chevy Monza is not for the faint of heart) and for trips back and forth between Boston and Albany at least once a month. That car lasted almost two years, helped out that every time we came home, another brother would rebuild the carburator or something to keep it running. I used to be proud of the fact that I “paid” less for my car than for subway fare; that, by God, it was ugly and clunky but had four wheels and ran (most of the time); and that when you were trying to merge on Storrow Drive you could just look over at the Alfa Romeo next to you and laugh - a car full of holes is a great intimidation factor - and they would always move out of the way.

But there was a downside to the seventiesmobile, as we affectionately called it. We had to get the AAA-plus package, the one with the 100-mile free towing (and actually used a 96.2 mile tow once when we broke down in the middle of the pike); we had to carry at least 2 gallons of water for the leaky radiator at all times; we had to drive with the heat on full blast and the windows open in the middle of July; we had to fill one tire with air every two weeks, and we had to budget a lot for repairs for the times we broke down when we weren’t near family. I could call the local tow company and say “Jim, it’s Val.” and they would ask “are you at home or at work?” not “who are you?”. We had to plan trips around how flaky the car was being, what the temperature was, and how far to the nearest rest stop. And on mornings it wouldn’t start, we had to call in to work, because none of the rental places in town would rent to someone under 25.

Finally the repairs were more than a car payment would be (and the seventiesmobile died with a boing, as the snapped alternator belt richocheted through the radiator leaving nothing but a pile of metal shavings behind). We decided to break with my family tradition and get a real car. It was a life-changing experience. Not only did we not need to run the heater in the summer, it had A/C! We no longer had to say “We’ll be there sometime between 2 and 7” or check that our supply of antifreeze and fix-a-flat was okay before we went anywhere. We could just get in the car and start it up and go.

After a week of having a “grownup” car there was no way we could ever go back. A whole layer of stress I wasn’t even aware of evaporated once I realized that I no longer had to keep track of where the nearest pullover was or how long a walk back to the emergency telephone.

Fast forward fifteen years or so to my diagnosis with Type 1. I feel I’ve got a pretty good handle on things, I’m doing okay with carb counting, and there isn’t a heck of a lot that I want to do that diabetes really gets in the way of. But, it’s like driving a junker. It’s always that background level of stress, that constant vigilance, that keeping track of stuff that nobody else needs to. I want automatic transmission, cruise control, and a stereo system. I want my grownup car.

DexCom versus The Other Guys: Twelve Thoughts

2006-07-16T12:27:00.000-04:00

I am in a fairly unique position with regards to the new continuous glucose monitors. I partcipated in a study with an integrated pump and monitor (you know the one) where I got to use it for six months, and then went out and bought a DexCom, which I have been using for two weeks now. So I thought I’d give you the lowdown on them. Remember, this is only my opinion, your mileage may vary, etc, etc, etc.

So, here’s my notes on who beats who for various categories:

1. Size of transmitter: DexCom wins. You get a little rectangular plastic doohickey on a large white pad that’s the size of the other transmitter. Plus, DexCom has no wires, while The Other Guys (hereafter TOG) have a little 3-inch wire tether between the sensor and transmitter, which I wound up having to over with a second piece of IV-3000 so the wire didn’t catch. That brings me to the next item:

2. Sensor and water: this is a toss-up. DexCom says not to cover your sensor, except for short periods of time like a shower. I’m not going to pay $ for the big cover-up every time I shower, so I just shower with the transmitter/sensor still uncovered on my leg. Sometimes it’s a bit off for an hour or so after, other times it stays dead-on. However, when I have covered the sensor, about half the time my improvised multi-IV-3000 patch leaks, and I walk out of the shower with the sensor in a little bag of water taped to my leg, and it’s off for much longer. With TOG I never had to worry about the sensor, happy under it’s IV-3000 blanket. However, read number 4 below:

3. Accuracy in the 200-400 range: Hey, am I supposed to admit I still go this high with a continous monitor? Well, I do, and I would say both seem pretty good in this range.

4. Accuracy in the 30-100 range: DexCom wins, big time. If I look over my six months of records with TOG, it claims I’ve been below 70 maybe a handful of times. Not True. My favorite was a gardening low where I felt low even tho sensor said I was 160. Tested in at 30. I hit 30 while on vacation last week, and DexCom read 36. Much, much better. The times when the DexCom sensor is off are when it’s still drying out from one of my bad shower patch jobs. In fact, that’s when it acts like TOG – maybe theirs is affected by the humidity under that patch and they just haven’t figured it out yet?

5. Size of receiver: TOG definitely win on this. DexCom’s receiver is way too big, and awkward to stuff in your pocket. I like the size of the screen on the DexCom, but maybe in version 2.0 they could move the buttons to the top and slim it down a bit. I mean, TOG has all the same kind of stuff in there, plus a full insulin pump in almost half of the space.

6. Flexibility: TOG lets you program in a lot more choices: alarm volume, etc – DexCom pretty much lets you set the high and low alarm numbers (it also has a built-in non changeable low alarm at 45). TOG would let you specify when to re-alarm if you are still low x minutes after the first alarm. Plus, DexCom’s picture driven menu is just a pain in the butt to use. Either use that extra CPU space to do something useful, or let me have the option of a single menu with “start sensor/stop sensor/set alarms/set date”. I don’t need the cute little animated transmitter. Really.

7. Accessories: TOG wins here too. Because it’s a pump, it has the standard belt clip plus all those companies making pump cases, etc. DexCom comes with a psuedo-leather, black plastic case with an annoying cell phone clip on it. You know, the ones that stick out like a little flat-topped mushroom on the top and hook into a too-small clip that keeps falling off your pants? Plus, it clicks whenever you bump it: CLICK…CLICK…CLICK. Yuck.

8. Packaging: I have to say, I know it doesn’t matter in the long run, but my DexCom came in a plastic case, that looked like I bought it off the shelf at Target. Much nicer than the standard cardboard-box-with-label. I felt more like a consumer of geeky electronics than a medical patient.

9. Battery usage: For both, the transmitter battery is understandably sealed. TOG’s pump-and-reciever works on a AAA battery, while the DexCom needs to be recharged every 3-4 days. It would be convienient to keep the charger at work, because that’s where I sit still the longest, but then I might forget it on the weekend. The don’t recommend charging it in bed, because the range may be a bit less while it’s charging, but that’s what I have been doing anyway. Come on, guys, drop a double-A into it, please.

10. Receiver range: Seems about the same on both. Both occasionally flake out in bed. I can live with that, I suppose, but I don’t like it. Maybe Navigator will fix this.

11. Sensor insertion: Once they’re in, I never felt either sensor, though TOG's transmitter would sometimes catch on somthing and feel like a pinch. DexCom has a thinner sensor wire, but TOG has a reusable inserter that is spring-loaded. With DexCom, I can’t help feeling that part of the $35 cost is the big plastic inserter I have to throw out with every use. Plus, I really can’t bring myself to do thumb-on-the-plunger insertion with something that big – I wind up holding it in place with one hand, and slapping the plunger down a la whack-a-mole with the other.

12. Software: I’m not sure if the software I used for the study is available to those who buy TOG, nevertheless they win because DexCom doesn’t have any yet. I know, it’s in the works and I’m waiting for it, but I really miss being able to print out my single-day summaries.

Well, I’ll probably have more to say later but that’s it for now. For me #4 is the only real point. That’s what I want the thing for, the rest is just fluff. I’m sure as these products mature, they’ll move a lot closer together – especially if insurance would start paying for them, a lot more people would use them.

Ch-ch-ch-changes….

2006-06-30T14:46:00.000-04:00

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….

24 hours of being me

2006-06-23T12:02:00.000-04:00

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.

Continuous Monitoring, Part 2

2006-06-14T15:46:00.000-04:00

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.

The Hike from Hell

2006-06-01T19:02:00.000-04:00

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.

Sensor Redux

2006-05-21T18:10:00.000-04:00

I feel that after all the rants I’ve posted about this sensor study, I ought to post an update on how I feel now. Two major things have changed. Number one was, I decided since the BG meter they wanted us to use wasn’t accurate at normal-to-low BG, that anytime I thought my BG was in the normal-to-low range, I would use my regular meter and manually enter the BG into the sensor. That has helped a lot with its accuracy. It’s still off, but now it says I’m 95 when I’m 65, not 40.

The second thing is, they’ve come out with a 2.0 transmitter and pump software. I had to go trade in what I’ve been using since Christmas, and start the new ones. This is to help with the long warm-up time, where you start a new sensor and it’s 120 points off for 12 hours. Now it does seem to reach its typical accuracy after about 3 hours.

So is it now at the point where I would use it? Yeah, I’d say so. The catch? My Animas pump is only 2 years old, so even if I wanted this, my insurance wouldn’t pay for it. On the other hand, I’ve gotten really used to being able to see the trends of what my BG is doing. The solution? The day I have to turn this in, I’m buying a DexCom. And keeping my fingers crossed my insurance will pick up at least some of the sensors. We’ve got six months of data to show how volatile my BG is, how I don’t have a hope of controlling it without continuous monitoring. So maybe they’ll pay for it. If not, well, starting in September we’ll be done with daycare, except the elementary before-school care, which is $500 less a month than we’re paying now. We’ll use that. Of course, it would be nicer if we could actually have a savings account, and we’ll have 3 kids to send to college starting in 6 years. But when you think of the possible expense of not having it…

So, for anyone who is planning on getting this integrated pump and sensor, here’s my top 5 tips/tricks/cheats. Disclaimer: I am not a doctor, blah, blah, blah, but here’s what I would do were I to keep this thing:

1. Never use a BD logic meter.

2. Be aware – this pump eats batteries.

3. When it claims to have a calibration error, don’t give it another BG value for at least an hour.

4. Unless you’re actually low when you calibrate, check the sensor isig value first. If it’s under about a 9.5, it’s not ready yet. Wait a bit.

5. If it says the sensor is bad, leave the sensor in, and tell the pump you’ve just put in a new sensor. Nine times out of ten that works and the sensor initializes happily and has no problems.

6. That same strategy also seems to work when your sensor has hit the end of its 36-hour life span. Tell the pump it’s a new one, and leave it in. The FDA says not to do it, but they aren’t paying for the damned things.

At the same time I start the DexCom, I am also going to start trying Symlin for the spikes at breakfast. We’ll see how that goes….

At what point does it become OK to blame the victim?

2006-05-19T15:10:00.000-04:00

Last week a “friend-of-a-friend” (type 2, diet controlled) was hospitalized in diabetic coma. She’s doing OK now, still in the hospital, but my friend was asking me questions like “Is 1200 a high blood sugar?” (you bet!). The doctor said she will need to be on insulin from now on, so I was explaining about how sometimes with type 2 the beta cells burn out and just can’t produce any more. In the course of the conversation it turned out the the woman in the hospital has not been to a doctor or tested her BG in more than ten years!

Made me want to hop into a time machine, go back ten years, and slap her when it might still do some good. I didn’t want to upset my friend, but lord knows what kinds of complications Hospital Woman has set herself up for. Or what kind of success she’ll have now that she has to pay attention to her disease.

I can understand getting burned out with a tight regimen. I personally think it’s worse to have to constantly refuse food you love than to just bolus for what you’re eating. But I can’t understand someone being told you have a serious disease, and just never bothering to do anything other than decide you’ll only have cake on special occasions.

I guess I just can't help feeling a bit pissed off at Hospital Woman. If someone had told me there was something I could have done to avoid taking insulin for the rest of my life, believe me, I would have done it. She has a niece or something with Type 1. Doesn't she know how much this sucks? Doesn't she realize she just threw away what I wish I still had, a body that works on automatic?

The Game

2006-04-22T12:18:00.000-04:00

Congratulations! You have been randomly selected to play. Here’s your first question:

Predict the amount of insulin you need for breakfast today.

To make it easy, we’ll show you a graph using the latest technology for the exact same breakfast at the exact same time with the exact same insulin dose for the past two days:

Take your best guess….You’re wrong! You’re always wrong! But, you do receive a consolation prize: blurred vision, irritability, nausea, rapid heartbeat, shakiness, confusion, fainting, etc, etc. Plus, at no extra cost, you’re automatically entered into our grand prize drawing for blindness, amputations, kidney failure, and a host of other disorders.

By the way, there’s an admission fee for this game. Depending on your insurance coverage, anywhere from several hundred to several thousand dollars per year.

What’s that? You don’t wan’t to play? That’s too bad, because according to our rules, you have to. You will never win, you will never break even, and you can never, ever, quit.

Time to proceed to the next round: correction or lunch. Again to help you out, here’s your last week of BG numbers:

Have fun!

Diabetes Hall of Shame, Vol 1 -- and the book meme

2006-04-14T20:05:00.000-04:00

I was surfing the OC at lunch yesterday and found this link on DiabetesMine

Amy’s comment on it was “Forbes reports: better treatments available, but the health care system falls short.” That sounded interesting, so I went to the page and read the article. As I did, I got more and more angry. The post is about Type 2 diabetes, although it never mentions there are two types nor that genetics play a role, and ended with the asinine quote "If you stay lean and fit throughout your life, you have a 95 percent chance of never getting diabetes," he said. "It's almost entirely preventable." From Dr. Robert Rizza, a professor of medicine at the Mayo Clinic and president of the American Diabetes Association, of all people. [emphasis mine]

I assumed that his quote was taken out of context, but still wrote out the following comment and sent it via their “comments” link:

"Diabetes" is not preventable
As a "lean and fit" person with Type 1 (formerly called juvenile) diabetes I found your article ignorant to the point of insult. Type 1 diabetes is an autoimmune disease having nothing to with weight, eating habits, or exercise. People with Type 1 must inject themselves with insulin daily to stay alive. There is absolutely nothing that can be done to prevent or alleviate Type 1 diabetes. Your article was about Type 2 diabetes, but you did not make any mention of this. And even though weight and inactivity are contributing factors to Type 2 diabetes, the are not the sole cause of it, and there are fit, active people with Type 2 because they have a genetic predisposition for it. [asswipe]

OK, so the grammar isn’t the greatest, but I was mad. And, of course, I didn’t add the “asswipe” but you can bet I thought it. I have gotten increasingly impatient with the blame-the-victim attitude found in almost all news reports, and this one didn’t even do the token “There are two types of diabetes…” sentence. I’m normally a fairly quiet person and don’t really enjoy calling attention to myself but now I am urging anyone who reads this to please follow the link and add your own comments to the editor….

And now for something completely different – Julia’s book meme. A disclaimer – I am a compulsive reader who has been know to read the toothpaste tube every morning if I can find no other reading material in the bathroom….

Instructions: Bold the ones you've read. Italicize the ones you've been wanting/might like to read. ??Place question marks by any titles/authors you've never heard of?? Plus I'm adding this, as Turtlebella noted that the choice of books by each author is a mite idiosyncratic: put an asterisk if you've read something else by the same author.

*Allcott, Louisa May Little Women
*Allende, Isabel The House of Spirits (also about half in Spanish)
*Angelou, Maya I Know Why the Caged Bird Sings
*Atwood, Margaret Cat's Eye
Austen, Jane Emma
??Bambara, Toni Cade Salt Eaters??
??Barnes, Djuna Nightwoodde??
Beauvoir, Simone The Second Sex
*Blume, Judy Are You There God? It's Me Margaret
*Burnett, Frances The Secret Garden
Bronte, Charlotte Jane Eyre
Bronte, Emily Wuthering Heights
Buck, Pearl S. The Good Earth
Byatt, A.S. Possession
Cather, Willa My Antonia
Chopin, Kate The Awakening
*Christie, Agatha Murder on the Orient Express
??Cisneros, Sandra The House on Mango Street??
Clinton, Hillary Rodham Living History
??Cooper, Anna Julia A Voice From the South??
??Danticat, Edwidge Breath, Eyes, Memory??
??Davis, Angela Women, Culture, and Politics??
??Desai, Anita Clear Light of Day??
*Dickinson, Emily Collected Poems
*Duncan, Lois I Know What You Did Last Summer
DuMaurier, Daphne Rebecca
Eliot, George Middlemarch
??Emecheta, Buchi Second Class Citizen??
*Erdrich, Louise Tracks
Esquivel, Laura Like Water for Chocolate
Flagg, Fannie Fried Green Tomatoes at the Whistle Stop Cafe
Friedan, Betty The Feminine Mystique
Frank, Anne Diary of a Young Girl
??Gilman, Charlotte Perkins The Yellow Wallpaper??
??Gordimer, Nadine July's People??
*Grafton, Sue S is for Silence
Hamilton, Edith Mythology
Highsmith, Patricia The Talented Mr. Ripley
??hooks, bell Bone Black??
*Hurston, Zora Neale ust Tracks on the Road
??Jacobs, Harriet Incidents in the Life of a Slave Girl??
*Jackson, Helen Hunt Ramona
*Jackson, Shirley The Haunting of Hill House
Jong, Erica Fear of Flying
Keene, Carolyn The Nancy Drew Mysteries
Kidd, Sue Monk The Secret Life of Bees
Kincaid, Jamaic “Lucy
*Kingsolver, Barbara The Poisonwood Bible*
??Kingston, Maxine Hong The Woman Warrior??
??Larsen, Nellaâ€“Passing??
*L'Engle, Madeleine “A Wrinkle in Time
*Le Guin, Ursula K. The Left Hand of Darkness
Lee, Harper To Kill a Mockingbird
*Lessing, Doris The Golden Notebook
??Lively, Penelope Moon Tiger??
??Lorde, Audre The Cancer Journals??
Martin, Ann M. The Babysitters Club Series
*McCullers, Carson The Member of the Wedding
McMillan, Terry Disappearing Acts
??Markandaya, Kamala Nectar in a Sieve??
??Marshall, Paule Brown Girl, Brownstones??
Mitchell, Margaret Gone with the Wind
Montgomery, Lucy Maude Anne of Green Gables
??Morgan, Joan When Chickenheads Come Home to Roost??
*Morrison, Toni Song of Solomon
??Murasaki, Lady Shikibu The Tale of Genji??
*Munro, Alice Lives of Girls and Women
Murdoch, Iris Severed Head
??Naylor, Gloria Mama Day??
??Niffenegger, Audrey The Time Traveller's Wife??
*Oates, Joyce CaroleWe Were the Mulvaneys
*O'Connor, Flannery A Good Man is Hard to Find
??Piercy, Marge Woman on the Edge of Time??
??Picoult, Jodi My Sister's Keeper??
Plath, Sylvia The Bell Jar
Porter, Katharine Anne Ship of Fools
Proulx, E. Annie The Shipping News
Rand, Ayn The Fountainhead
Ray, Rachel 365: No Repeats
Rhys, Jean Wide Sargasso Sea
??Robinson, Marilynne Housekeeping??
??Rocha, Sharon For Laci??
Sebold, Alice The Lovely Bones
Shelley, Mary Frankenstein
Smith, Betty A Tree Grows in Brooklyn
Smith, Zadie White Teeth
Spark, Muriel The Prime of Miss Jean Brodie
Spyri, Johanna Heidi
Strout, Elizabeth Amy and Isabelle
*Steel, Danielle The House
*Tan, Amy The Joy Luck Club
??Tannen, Deborah You're Wearing That??
Ulrich, Laurel A Midwife's Tale
??Urquhart, Jane Away??
*Walker, Alice The Temple of My Familiar
*Welty, Eudora One Writer's Beginnings
Wharton, Edith Age of Innocence
*Wilder, Laura Ingalls Little House in the Big Woods
*Wollstonecraft, Mary A Vindication of the Rights of Women (is this a trick question – isn’t this Mary W Shelley above?)
Woolf, Virginia A Room of One's Own

Things I have learned from using a continuous monitor

2006-03-21T14:56:00.000-05:00

1. The type of food I eat makes no difference whatsoever. Wheat bread is not better for my BG than white bread (it just tastes better).

2. Using the elliptical makes my BG go up for 4-5 hours three hours after I stop. It does lower it while I’m exercising, though. (this is the opposite of everything I have ever read on exercise).

3. The BG spike from two ounces of amaretto is negligible.

4. Orange juice used to treat a low wears off 20 minutes later and I’m low again. Whole milk works better.

5. Combo/extended boluses really work. I usually set mine for 50% now, 50% over the next half hour.

6. If I eat breakfast, my BG will go over 230. Always. If I take a lot of extra insulin, I will first go over 230, then go low. Skipping breakfast shows my basal is fine.

7. Stress does not seem to affect my BG at all. Or, my BG is so sensitive to stress that it is constantly affected by the stress of waking up, the stress of driving, the stress of working, the stress of not working….

8. The low BG alarm on the monitor is embarrassingly loud during the day, but will not wake me at night (possibly because by the time it thinks I’m below 100 I’m really below 50). It doesn’t wake my husband either.

9. The best week I have ever seen for BG was during Christmas, when I ate tons of baked goodies, drank lots of sweet booze, was under a lot of stress both at work and home, and did no exercise. Go figure.

10. Even having a continuous readout, doing ten or more fingersticks a day, and going over everything with my CDE once a week does not get me to an a1c of 7.0.

11. Some days, my BG numbers are just completely random. I have not yet tried seeing if there is a correlation to the Dow (Val’s BG went up after hearing news of the dollar’s weak showing against the yen). Don’t laugh, I’ve tried everything else.

12. I work backwards. I can pretty much read what is supposed to happen for the “typical” diabetic and know I’ll be the opposite. This includes exercising (higher not lower), junk food (spikes less than health food), menses (high for 2 weeks after, low the week before), and being sick (runs lower when I’m sick).

13. Decaf coffee raises my BG. A large decaf coffee with ½ cup milk I have to treat like 20g of carbs. Don’t ask my why, that’s just how it works.

14. Just because I can see my BG is high, doesn't mean I can do anything about it.

Don't pull out that checkbook just yet

2006-02-19T10:48:00.000-05:00

I haven’t been updating very often. I kept hoping the initial issues would be straightened out and I’d be able to tell you how wonderful the integrated pump and continuous BG monitor was. I knew it wouldn’t be perfect, but I had hoped it would at least be useful. I’m not so sure it is. Here’s my opinions, in bullet form:

What they got right

The display. One click on the pump and I see a graph of the previous 3 hours, plus my current BG reading, plus an indicator if things are changing “rapidly”: one arrow for rising/dropping a point a minute for the last 20, 2 arrows if two points a minute. This screen is probably the most useful thing about the whole setup.

The display part 2. There is a second screen which shows you the previous 24 hours, same extra info, which is really great when you wake up and want to see what the heck happened overnight, or is my bizarre overreaction to breakfast today as bad as it was yesterday, etc.

The software. As part of the study, you download the pump to a website, where you can create various reports of the data. My favorite is the one where you can overlay the past X days of sensor readings, to allow you to look for patterns. Sure, there are improvements that could be made to the interface for this, and more flexibility would be nice, but in general it’s a useful tool the way it is. Which brings us to –

What needs more work

Accuracy. It’s hard to decide where to start on this list, but I guess this is the biggest issue. I mean, we all know that the BG reading you see on your meter is pretty much an imaginary number. Try it twice in a row, or the same drop of blood and strips in your meter and back up meter, and you’ll see ten to fifteen points difference most of the time. Plus, sensor is measuring BG in interstitial fluid, not blood. So I know I shouldn’t be upset if the sensor and the meter disagree by 20 points or so. The problem is, they differ by much more than that an awful lot of the time. You pretty much have to ignore the first twelve hours or more, where I’ve seen the sensor and the meter as much as 100 points apart. (See warm-up time, below). But even when you’re on day 2 or 3 of the sensor, sometimes the readings are just out to lunch. Like 190 versus 286 as a post meal reading.

The BG meter. OK, this is a study thing, but maybe it’s contributing to the accuracy mentioned above. The deal is, all us study participants must use the same meter and strips. Makes sense, doesn’t it? Except, there’s a problem with the meter we’re using. It’s not great below 100. %$#@&! Hello? Below 100 is when you NEED the meter to be accurate. Here’s the deal. I tend not to feel a low until I’m about 55 or so. I’ve been working at avoiding them (I averaged one a day below 55 before the study started) and now only seem to get shaky every other day or so. But, when I check with the meter, I was seeing things like 94, or 78. Hmm, guess I was wrong. Well, then I get a call from our study coordinator saying that they think there is a problem with this meter in the normal-to-low range, so if you feel low, treat it anyway, or double-check on your old meter. So the next day I felt weird; the sensor showed me happily buzzing along at 110 or so, and I decided to do a comparison. Big drop of blood, half on old meter (fresh bottle of strips), half on the meter for the study, the one the sensor calibrates against. The result? Study meter says I’m 78. Old meter says 53. I feel 53. Making the sensor exactly DOUBLE my best guess as to my actual BG.

Sensitivity. I try to look at the picture more than the number. Hey, the numbers may be off, but at least it shows you whether you’re climbing or falling. Except when it doesn’t. Take this morning for instance. When I went to bed, sensor thought I was 156; meter said I was 136. No big deal – in the ballpark, if slightly lower than I like to be at bedtime. I decided to leave it alone and see how I did overnight. I woke up, and the display screen showed me relatively flat all night and currently 142. I checked with the meter and got 85. WTF? I dropped 51 points overnight, not 14. There’s a big difference there. To be fair, I realize this is a complex thing to measure, the sensor degrades as your body tries to “coat” the thing under your skin, which is why you have to keep re-calibrating it with the meter. BUT, as a consumer I’m just saying that I don’t like it.

Warm up time. You have to change the sensor every three days. I do it with my site change. After you put the sensor in, you tell the pump about it, and it goes into a countdown for 3 hours, and then beeps to ask you for its first calibration reading. About 15 minutes after the calibration your first reading shows up on the pump. So far, so good. The problem is, that it takes a lot longer than that to actually be accurate – or as accurate as it gets. Some times it seems ok in the afternoon after my morning site change, some times it’s not synched up until the following morning. Some times it never syncs up. Then, at 36 hours exactly, it beeps and shuts off. The reasoning (I assume) is, that it degrades over time (hah!) and they don’t want you using the meter values as gospel when they know it’s off. As opposed to the rest of the time, when the inaccurate values are apparently OK. It would be better if at 36 hours it gave you a warning (like a low reservoir warning) and then shut down in another 6 or so.

Quality control. The first box of sensors I got, half of them went bad. Most of those were during the warm-up period, before I ever got a reading from them. My study coordinator actually replaced the little transmitter too, in the thought that it might be that rather than the sensors going bad. Afterward, in the second box, I’ve only had one go bad. BUT, keep in mind in the real world, I’d be paying for these. Let’s assume these sensors sell for the same price Wil pays, about $40 a pop. I’m ignoring the cost of the transmitter and the pump itself here. That means I tossed about $200 without ever getting any benefit from them. Add to that the warm-up day, the accuracy problems, etc, and it comes out to about $40 a day when you actually get useful readings from them. Would I use it if my insurance paid for it? Yeah, in a heartbeat, because it’s at least better than what’s out there right now. Would I use it if I had to pay $15 a day on my own? Probably. We can afford that, if we’re careful. Would I use it as it stands now, where I average 1 day in 3 of useful information – $40 a day for the days that it works? No way in hell.

Transmitter. The transmitter which sends the readings to the pump is not small. It’s an oval shape, the length and thickness of my pinky. You stick it to your skin with an adhesive pad that starts to itch after about two days and leaves behind a sticky residue That you have to really scrub at it to get off. A lot of times, it doesn’t deal with the fact that while I’m sleeping the pump might be on the other side of my body. It beeps politely to let me know there’s a weak signal, which I sleep through, and eventually shuts off sensor communication. At this point the pump beeps again, and again, until it finally goes into beep and vibrate mode and wakes me up. I turn on the light, clear the alarm, and re-start the sensor, which means that in 15 minutes it beeps again wanting a calibration, so I can’t go back to sleep until that happens. Now on its own this wouldn’t be a big deal. In fact, if this was the only problem with the whole setup I wouldn’t even mention it, but it is an irritation. And the fact that it is this thing that wakes me up, rather than a low alarm when I’ve obviously gone low overnight, this just pisses me off. I’ve had to reset the low threshold to alarm if I dip below 100 to have a chance of catching it before the real BG hits 50. What I think the issue is here is that they are using the technology because it’s cool, not because it’s useful. Yes, it’s really cool that the sensor/transmitter broadcasts a (random) BG reading to the pump, and that the pump displays them for you. It’s great that you can do this without wires. BUT, what the developers seemed to have forgotten, is that we’re already hooked up to the frigging pump. Why not just run a wire along the infusion set tubing, with say 12-18 inches of free wire at the end so you can position the sensor away from your infusion site. That way, you’d definitely change it with your site, AND you wouldn’t have to worry about this lost sensor crap. Plus I wouldn’t find the damn thing alarming every time I step out of the shower, because it would KNOW I was disconnected.

OK, I’m not going to go into the minor annoyances at all, because if the major ones were fixed I could deal with the minor ones. My husband is amazed I’ve stuck with the study, but I want them to see what’s wrong, so they know what they should do before they make this a commercial product. I mean, it COULD be so damn good, if it only worked. In the meantime... Do you remember all the hype before Windows 95 came out? How great it looked, how much it did? And then when you actually used the real product, before the service packs came out? This is worse. This is Microsoft Bob (or the Paper Clip Guy, for those of you fortunate enought to have never seen Bob). It’s something that in theory could be really useful, even indispensable, but in reality it’s just a giant pain in the butt. I really hope they can get this to work – or someone else can – but I don’t think I’m going to be the first to jump on the boat to start throwing money at a 1.0 product.