Life with a Spouse

Why oh why didn't we ask?

2006-08-15T12:06:00.000-07:00

Jack finally called the insurance company yesterday about covering his testing supplies. And boy, do we feel stooopid. J: "I wish I had done it earlier. It's really quite easy. They cover all the test strips except for a $20 co-pay." Me (in a very snappish-PMS tone): "Jack, I told you to call them months ago!"

I don't even want to think about calculating all of the thousands of dollars we've needlessly spent over the years simply because we didn't ask. We just assumed. ARGHHH.

However, the person he talked to had never heard of the DexCom and asked for a billing number. We'll see how long it'll take Jack to follow up on that... So really, the DexCom is quite more expensive if we'd actually, correctly, used our insurance coverage.

The Belly

I was looking at Jack a couple of days ago while he was relaxing after lunch - usually not a very attractive pose for anyone, but gosh darn it, I could have sworn his belly looked a bit smaller. Then later that day, he patted it and said: "I think my stomach's smaller!" Independently confirmed - I guess it wasn't a trick of the light after all =) Yay - and all it's taking is cycling an hour a day for 2 weeks. I wonder if Adora will remark...

The Husband's Mysterious Mind

2006-08-08T13:11:00.000-07:00

Jack has been dropping off and picking up Kooky Kid from daycare by bicycle. Hooray! I think this fortuitous turn of events was inspired by KK's classmates' bon mot. I'm immeasurably impressed by his efforts because it took quite some effort to retrofit the bike, take the childseat off my bike and install it on his. So he's biking at least 45 minutes each weekday, the DexCom faithfully recording the BG as it steadily lowers during his journey. And (the cherry on top of all), he takes glucose tabs with him (woohoo! preparation!), and he loads himself up with milk and juice before going. I am so proud, I could cry... He is so proud of himself, he reminds me every day: "My stomach's smaller already! I really like the biking!" Then, yesterday, "And I thought of it all myself, right? You didn't make me do it!"

Right. I thought he was a bit more enlightened than that. He's Dutch. He cooks. He vacuums. He changes diapers and he can get the baby to fall asleep when I can't. But he doesn't do things just because I tell/ask/suggest him to?! Yeegads, that would explain a lot of things. And I can't believe I didn't realize this until now, on our 14th-year anniversary. So I should be more crafty when I want him to do something? Plant the seeds instead of laying it out straight?? But it's understandable - he probably often feels that the diabetes controls him. Add onto that the perception (maybe reality) that his wife is also imposing control over him, and any sane human being would balk.

Ironically, I actually did suggest the bike riding, months ago =)

Oh, My Kingdom for a Peaceful Night

2006-07-31T12:52:00.000-07:00

My best-est friend, The Dex, woke me up 3 (or 4?) times last night. As any new mother will tell you, the lack of uninterrupted sleep will fry your ability to create coherent thoughts or memories.

Anyways, Jack has his lower limit alarm set to 80. It buzzes me awake when it crosses that 80 mark, and I wake him up to drink something. We've recently figured out that one glass of milk will very nicely bring his BG up and keep him steady for hours while he sleeps. Last night, however, he either didn't feel like getting up or never really woke up. His BG hovered around 80 all night - which is great, but every time it crossed that limit on its way down, it would buzz. I tried to kick him out of bed to drink some milk so it would at least hover around 100, but he just checked The Dex, and turned around. And snored. The big lug...

Again, what's a little cross-eyed sleep-deprivation for my husband's healthy A1c?

Not Even Safe at Safeway

2006-07-31T12:22:00.000-07:00

Sometimes I think Jack and I are both simpletons. Some things, very obvious things, completely pass us by, even though they're waving red flags in front of our noses. Such as...

We often walk to Safeway, our friendly overpriced neighborhood grocery store. It's a 10-minute walk at most, unless the Kooky Kid is accompanying us on his motorcycle (aka tricycle), in which case it's a 45-minute journey. Invariably, after about 30 minutes of shopping, Jack's BG takes a nose-dive. Usually as we're walking out the door on our way home. I always assumed it was due to the increased physical exercise, but was somewhat puzzled because walking to the same-distanced park did not produce this effect.

Lo and behold, an epiphany when the same thing happened yesterday: It's the temperature, dummies. Just as last week's record heats wreaked havoc on Jack's BG, so does Safeway's sub-zero ambient temperature. His BG also plunges after he's been swimming for 1/2 hour. It would seem that he needs more glucose to combat the effects of the cold and keep his body temperature up. Duh. So. Obvious.

The other thing I learned, in retrospect, is that we eat a lot of junk food! These post-Safeway BG emergencies were always saved by the loot we were carrying home. On different days: chips, cookies, chocolate milk. Yikes. Yesterday it was bananas - but only yesterday. Gotta get more control over the junk food!

Night Visitor

2006-07-21T10:39:00.000-07:00

For the 2 of you who got to my blog not through DiabetesMine, I have another post there on a peculiar Night Visitor.

Hooked On It

2006-07-20T13:56:00.000-07:00

Well Jack's truly and verily hooked. He can't get enough of it and gets very, very nervous when it's gone. It's even warped his sense of reality and rational thought. Yep, he's addicted to The Dex Line. Yesterday it fritzed out on him again by showing him at 384 (yikes). He did a fingerstick to check and that came in at 38 (ouch). Well, The Dex was only off by one digit right? heh. And then came the shocker. He refused to drink any juice.
Me: Since when do you not drink juice when you're 38??
Jack: Since I have The Dex. And it says I'm high.

I've been (and am) a staunch proponent of this CGMS, but this is a negative I did not expect. Oh boy, they did warn us, those DexCom people, and the FDA, that you shouldn't base your treatment on its data. But it's hard not to do that - after all, why the hell get it if not to use its data to modify your treatment??!

Well, this is why. You get hooked, and it deceives you when you can least resist it, in the midst of a very low hypo. I finally convinced him that his meter really is more accurate than The Dex. The performance of this last sensor has been sporatic. Its data has been very far off fingerstick values a few times, and a couple of other times it's gone dead altogether. This latter situation is never pretty because then Jack gets very nervous: I don't know whether I'm going up or down! I don't know what my BG was 5 minutes ago, or now, or 5 minutes from now! I can imagine it's a bit like being blind (pre-Dex), getting full eyesight (during-Dex), then going blind again (no-Dex).

Both he and I have become very reliant on it, even with all its quirks. I check it during the night when I happen to be awake (and he asleep). We talk about the "night-line" every morning and cheer if it stayed within limit the whole night. He proudly shows me sustained flat lines like a little kid (Do you want to see my line? Do you? Do you?). I wonder if CGMS users show each other their lines when they get together (I'll show you mine if you show me yours.).

Anger vs Patience

I can be very angry at him when he goes low, as if it were his fault. But most commonly, anger within relationships is rarely about the specifics of the events, but reflective of some deeper problems. I notice that when I'm upset, I react angrily at his lows. When I'm calm and well-fed, I can patiently get him juice and repeat many times, You need to drink some juice. Yesterday I was tired from work and cooking dinner, and it was fricken' HOT people. So when he went low, and wouldn't drink the juice, and was telling me that the fingerstick numbers meant nothing, I lost it. I would have screamed if I weren't a repressed 'girls don't raise their voices' type of girl, but instead had to contend with dramatic eye-rolling, throwing a couple of fists in the air, and grrrrrowling in frustration. I walked away and really wanted to stay away, but I couldn't, could I? I had to stay and make sure he didn't slip into a coma, damn it. Maybe it was the growling, but he drank the juice after a few minutes. Afterwards, of course, I always feel guilty about my anger.

When our relationship was going through a bad patch (totally non-diabetes-related), I would become livid with his lows. There's a huge difference between an accusatory Are you low?!! and a gently inquiring Are you low?. Luckily for the both of us, nowadays I do the latter more than the former.

Ho Ho Ho

2006-07-18T10:29:00.000-07:00

Exercise

Jack went to pick up Kooky Kid from pre-school last week. One of the classmates is a very cute, very chubby, pig-tailed little girl who looked up at Jack and said, "You have a big stomach!" Well Jack, being the type of guy who'll not let a 3-year-old get away with slighting him, poked her in her stomach and said, "Well you have a big stomach too!"

I totally cracked up when Jack told me the story because he said his feelings were "still hurt". I've been suggesting that he modify his diet or exercise more because he looks like he's 8-month pregnant. When I was pregnant, I would compare my increasing belly with his (at the time, he had a 6-month belly). Not subtle you say? Ya - subtlety does not count with him. Did this work? Naah.

But a little 3-year-old commenting, well that did (somewhat) work. He jumped on the treadmill for 30 minutes the very next day, and vowed to do so every day until the belly's gone. He "took a break" during the weekend, so we'll see whether the resolution will hold.

Diet

Jack loooves his fried/sated potatoes/meats and thick cream sauces. And his mega-size burrito. And his beer (especially his beer) and wine. Which would be ok if he exercised as much as he used to, but not at his present level of physical activity.

We used to live in The Netherlands where he commuted to work by bicycle because it was the norm, people! He ate more then, but was a slim, trim, muscle machine (I was certainly slimmer and trimmer too, but we won't dwell on that).

Lately he's argued that his diabetes is a cause of the belly: too much insulin=glucose correction. Too much glucose=belly. I say it's simply: more calories in than is being used up.

This is Life?

Jack and I have an ongoing debate about health and finances. He resists too many limitations on his diet or his spending because he says he may die tomorrow. So he should enjoy today. But, I argue, what if you live to be 100? Would you want to be decrepit and poor? Enjoy life today, but also remember that you're the caretaker of your future. Luckily, he more than knows this with regards to his diabetes.

The Temperamental Dex

2006-07-17T10:24:00.000-07:00

Jack put in his 3rd sensor on Saturday. Two hours later he calibrated it (one finger stick from each hand), and started getting readings. But a short while later, he said that he felt low. The Dex showed 146. A finger stick showed 46 - ouch. The rest of the evening didn't fare much better, with huge discrepancies between The Dex and Jack's meter. We have a couple of hypotheses for this: (1) It takes a while after a new sensor is inserted for the readings to stabilize. Jack's heard that it sometimes takes a sensor a day to get the most accurate readings. (2) His BG was wildly fluctuating (most plummeting down) during the period after the calibration. But increased finger sticks & inputting that data into The Dex drastically improved readings.

By 11pm that evening, he wasn't getting any readings at all. Nada for 3 hours. So he restarted his session and the calibration process (yeah, it woke me up at 1am to demand those 2 finger sticks). Since then, it looks like it's been ok.

The Dex does lose contact every now and then, notably at night. Jack keeps the receiver on his night stand. Is is possible that when he lies on top of the transmitter the signal is lost? Supposedly the signal should easily traverse sheets/blankets/mattress. Ah well - this is still no worse than not having The Dex...

How The Dex Affects My Responsibilities

Last night I woke up to its vibration and nudged Jack so he could check it. He looked at it, then turned around and went back to sleep. So then I was left in the dark, wondering, "Did he consciously decide to ignore the alarm, or was he just groggy from sleep and just fall back asleep? Should I get up to check it myself and nag him to get juice/bolus, or assume he can take care of his own regulation?" Hmm - what a conundrum. Bad spouse that I am, I just turned around and went back to sleep.

This morning, he said he'd expressly ignored it because it showed 79, but the line was pretty steady. Then we looked at the data, and it showed a dip into the 50's, and a subsequent rise into the 80's. So it was ok this time, but he should probably have had a little juice.

Since The Dex, I've felt my responsibilities lighten a bit. Jack is *mostly* alarmed by it when he's **about** to go too low, so takes action then. As opposed to finding himself in a state where he is no longer able to make decisions. We've had many less situations when I'm nagging him to drink juice, although it does still happen. Sometimes his BG plunges so rapidly that The Dex isn't quite caught up yet (my hypothesis).

Money Money Money

Believe it or not, our monthly expenses have decreased since Jack's been on The Dex. He was able to use his first sensor for 6 days (the insertion site hurt by then) and his second for 10 days (probably could have gone longer, but the tape holding the sensor came off). Even if we had bought the system at full price, we would have recouped the money in about 4 months. So all in all, a savings!

The Dex (not including transmitter/receiver):

- $35/sensor, 1 sensor/8 days (average) = $131.25/30 days
- $0.90/strip, 2 strips/day = $54.00/30 days
- Total for 30 days: $185.25

Without The Dex:

- $0.90/strips,14 strips/day = $378/30 days
- Total for 30 days: $378

What's My Line?

2006-07-13T12:52:00.000-07:00

Here are the first charts from Jack's DexCom data (provided by the DexCom rep). Each of the dots is a measurement point:

One week's data:

My immediate reaction to this chart was, "Wow, his regulation is not at all bad!" With a few exceptions...There's the spike up to 350 on the last day which oh-so-pissed him off at the time. But in context of the whole week, he realized that it was just a blip. This chart also clearly shows him that he's too often in the low range (about 30% of the time), so he's recognized that he needs to take action a lot earlier to prevent those.

Seven days' data overlaid on top of each other:

This chart shows consistent highs around 4am, and lows around 8am, 1pm, and before dinner. He's tweaked his basal in response, and now is much better around 4am. We'll have to see about the rest of the day; it's very difficult to analyze without the PC software.

5-min interval data points are bad?
Yesterday Jack was low for 4 hours. Glass after glass of juice, and The Dex still deemed him low, at 60 + 10. We were starting to wonder whether he was the first Diabetic medical miracle (28-year Diabetic Produces Insulin Again!!). In this case, he was annoyed and angry at his body's weird reaction for 4 hours straight. If he had not been hooked up to The Dex, he probably would have been annoyed and angry 8 times in 4 hours. So which is worst?

To CGM: The Dex

2006-07-11T10:20:00.000-07:00

Serendipity and nagging finally paid off! If only I were talking about the lottery, but alas... Still, it's close enough to winning the jackpot: Jack is hooked up to the DexCom CGM! I have to give kudos to the DexCom rep who jumped through hoops to make this happen in a timely and cost-effective manner.

For insightful and detailed experiences recounted from the user's view, read Amy's and Matt's blogs. My observations after 1.5 weeks of living the The Dex:

5-minute interval data is good:

- I have a much better idea of what Jack's BG is doing. Because: (1) he keeps gleefully telling me every ten minutes (ok, so this can get old), (2) I can check for myself if he's asleep, and (3) we see trends. This last point is crucial. Is it increasing? Is it decreasing? Now we know! As Amy wrote in this month's Diabetes Forecast, we're watching a movie instead of only looking at snapshots.

- And yes (contrary to official recommendations), Jack's based his treatment on its data, and prevented countless highs and lows by:
* Reacting to The Dex's alarm when he exceeds his limits (80-160)
* Doing analysis of long-term trends (e.g. because he was consistently high at 4am and low at 8am/1pm/5pm, he's changed his basal insulin delivery around those times to great results)
* Monitoring in real time the effects of sleep, insulin, food, and time of day. It's much easier to adjust the regimen on-the-fly.

- It's easier to put things into perspective. Before The Dex, Jack became livid when his BG went far out of range (e.g. 350). But then we looked at this whole week's worth of data, and it only happened once. It absolutely helps to keep those spikes in perspective.

- Jack says he "loves it". I think he feels he has much better control, and that he isn't dealing with his diabetes with a blindfold on anymore.

- It's pretty fun to look at that line, especially when it's flat-lined around 100 for the past three hours!

5-minute interval data is bad:

- We've had a couple of bad nights when The Dex has vibrated and yelped several times during the night. Well I guess that's good because it helps with the BG treatment, but bad because I get no sleep (couple that with baby & toddler interruptions, and I'm looking at 1-hour sleep intervals). Also, Jack's such a heavy sleeper that The Dex wakes me up, and then I have to wake him up. Nevertheless, I'll take a few sleepless nights over BG readings of 230 or 39.

- Jack can get rather obsessive about the readings. Yesterday he was in the 50's before, during, and for 2 hours after dinner. For some reason, being able to see the unusual trend real-time really worried him. But I calmed him and it all resolved itself nicely (again, thanks to being able to see the trends).

- It's not going to keep the BG within range all the time. Because shit will happen. The BG will plummet and shoot up, despite the alarms, trending lines, and analyses. All we can hope is that it'll happen less often.

Could be improved:

- We have noted, as have others, some inaccuracies in the readings. But we've been lucky, I guess, because the differences in The Dex's readings and Jack's meter haven't been more than 20 points off. e.g. Yesterday The Dex's reading was 49, and his meter came in at 67. Is 20 points a lot? IMO, it's acceptable because it's coupled with the trending data.

- We're still waiting for the software to be approved by the FDA (although the Dexcom rep and Jack's endo have it).

- Data display on the receiver could have been better designed.

- The transmitter is not waterproof! They've got "shower patches", but it still makes me nervous. We went swimming last weekend, and I swear that I saw some water in the patch, but Jack says it was ok.

Finally...
Lastly, I can't prove this of course, but I firmly believe that Jack's had fewer extreme lows and highs, and less fluctuation from the norm. Yesterday, I sent Jack and the baby out for a walk, without my internal alarms going off. How about that?! And low and behold, Jack even grabbed an emergency source of glucose before he set off. Is it my imagination, or has he become more responsive & responsible over the past week?

The Benefits of Diabetes

2006-06-05T13:58:00.000-07:00

I'm usually not an optimistic person (call me a realist), but on rare occasions, I like to take a walk on The Other Side. Some musings on the benefits of diabetes:

We appreciate health where we got it. I don't take for granted the workings of our body and am so thankful that we're all healthy & mentally capable. Today.

Science is amazing. Diabetes is a chronic disease, not a fatal one. Today.

It's a great excuse for belly fat ("But honey, I need this belly so it's easier to inject").

My 3yo appreciates the ever-present supply of sweets/glucose tablets/juice.

Appreciation for hardwoods & very funny hypoglycemic reactions (hey, I'm not an ogre - Jack laughs at these too). I always remember one in particular: I woke up at around midnight and didn't see Jack in bed. I wandered out into the living room, where I found all 6'1" of him on our smallish-coffee table. He was on his back, curled up into himself (how else could he fit on the thing?), and amazingly propelling himself around and around, like a top (or weird synchronous swimmer). I've forgotten the rational around this, but there definitely was one, in his glucose-deprived mind. Well, we found out that night how strong that hardwood coffee table was.

I'm so educated about diabetes, I can lecture other people and dash their misconceptions (yeah, right).

To CGM cont.

2006-05-31T14:34:00.000-07:00

To CGM cont.

Jack and I have been continuing our sporadic conversation about whether he should get a CGM. Couldn't hurt, I think. But then, I'm not the one with canulas stuck into me. Well the other day, he mentioned a new objection: too much information. He said it's enough of a headache to modify his present regimen with the ~15 data points he gets from fingersticks. Let alone the ~280 data points he would get with a CGM. Would he have to be continually adjusting his regimen? This objection, I understand. It's absolutely exhausting to deal with this disease. What he does now is to allow himself to "forget about it" in increments of 1-2 hours between fingersticks. The possibility of continuous data points also creates the possibility of continuous adjustments. How tiring does that get?

Well, I replied that he doesn't have to do anything differently than he does now. That's the thing with having more information: you can always ignore it. If nothing else, the thing will alert him if he goes above or below the set threshold. If nothing else, that in itself is an improvement. I think that convinced him. He said he would talk to his dr. about it (good), but has so far procrastinated (bad).

Depression
The other day, Jack got very depressed. Kooky Kid K had yelled at him and tried to bite him again. That seemed to have been the last straw for Jack. He started to talk in scary, desperate terms. The 3 items on the list:
1- Kooky Kid hates him.
2- He'll never find a job.
3- He can't control this f*** disease.

Yeah, that outburst scared me shitless. But we talked and talked, and he felt better. Lots of stress in our little household; diabetes has a long sharp tip which chips away at our sense of control and creates jagged edges in the sculpture of the family.

How to avoid lawsuits?

I found this warning within the packaging of a Mounds bar, which cracks me up:
"Candy is a treat. Please consume in moderation."
Uh huh, candy's now in the company of alcohol.

Money & Diabetes

2006-04-28T14:47:00.000-07:00

Wanted to clarify my last posting in response to a reader comment:
"Worries: Arguing with Jack about money & diabetes"

I didn't mean to say money and diabetes in connection to each other. As we all know, health is priceless. It would be ridiculous & cold-hearted of me to resent the money we spend on testing strips and infusion sets (although I do resent the fact that our insurance does not cover either).

I don't argue with him about how he manages his diabetes, because I think he does a damn good job at that. I do argue with him about how he manages his life (e.g. driving, looking after the kids) and that he could take into greater consideration the fact that he has diabetes. What he can do to best mitigate the dangers of hypoglycemias.

And I argue with him about how much money he spends on non-essentials when we only have one salary coming in, living in one of the most expensive areas in the country. Yep, I'm the saver and he's the spender. Why not enjoy life now, because you could be gone tomorrow? he says. True, except that you may live to be 100 and not have enough to live on. And so it goes...

A lot of patient literature refers to those who live with a PWD as "loved ones". It's funny (or not) but sometimes I don't feel like a "loved one" at all. In the heat of those moments and dark of the night, I'm not feelin' much love for Jack. Momentary lapses born out of frustration and fatigue, I suppose. And then I feel guilty because he's the one with diabetes; I have the easy part.

My Life as a Dog

2006-04-21T11:25:00.000-07:00

Random notes from 1-4am last night

- Got up every 1/2 hour to calm 3-year old K, who's sick & coughing.
- Got up once to nurse baby, her dark liquid eyes blinking at me.
- Woke Jack up to suggest that he check his BG (which he did (43), drank some juice, came back to bed without any fuss - woohoo!).
- Stayed awake listening to them breathe and snore.
- Had Billy Bragg's "Blake's Jerusalem" run through my head over and over
- Had "The Magic Schoolbus" theme run through my head over and over
- Thought about some movies:
* Really Disliked: "Breaking the Waves"
* Liked: "Spring, Summer, Fall, Winter...and Spring", "Night on Earth", "Curse of the Were-Rabbit", "My Life as a Dog"

"My Life as a Dog"

Thought it was time to take a step back after many months of rage and sadness and self-pity, and think about the dog. In the film, the young boy tries to take the positive view of his tragic-pocked life: it could always be worst. Like the dog which was sent up in the experimental rocket ship.

As much as I complain, my life is sooo not tragic or miserable. We go swimming at a local pool every now and then. About 6 months ago, I noticed another family: father, mother, twin babies. The father sat in a wheelchair calmly watching over one twin seated in a stroller; he had obvious limited physical mobility. The mother was always energetically playing in the pool with the other baby. The next week, she would have the other twin in the water with her, smiling and laughing. Well surely their family logistics is three times as difficult as mine!

Worries:
- Jack's diabetes, future complications, financial strain of paraphernalia.
- Jack being unemployed for almost 2 years, desperately wanting a job.
- Assorted worries about the kids, present and future.
- Possibility of being layed-off from the struggling ill-managed Corporation, and losing insurance coverage.
- Arguing with Jack about money & diabetes.

Good things:
- Jack is a great husband and tries-hard-father.
- Jack loving bonding with the baby because he's at home taking care of her.
- Everyone in my family is healthy.
- My boss is great.
- K is 95% potty trained!
- Crunchy crusty bread smeared with a thick layer of Plugra butter (best butter on this side of the Atlantic).
- Getting a surprise, sizable refund from the IRS for 2004, yesterday (how weird is that?!).

Regrettable things
- Our idiotic foreign policies.
- My gas-guzzling v6 midlife/mommyhood-crisis car.
- My father never knowing sweet baby.

To CGM or Not To CGM (cont.)

We continued our conversation about the continuous Glucose Monitors last evening. Jack was still hesitant, and I prodded him about other causes for his reluctance. He admitted that he didn't want another thing stuck into him in addition to his pump. He's had good success with the pump, except for the infusion sets. Sometimes they work, sometimes not. It is a pain, when his BG is very high, to guess whether it's really his BG, or whether it's simply because the infusion set's bad and he's not getting any insulin.
Although, he did recognize that getting a CGM will decrease the need for finger-sticking (which he does ~15 times/day). Anyways, I suggested he read blogs of folks who are already on the CGM's. He said he would (without much enthusiasm). To be continued...

Acknowledgement
I would like to acknowledge Amy's blog, DiabetesMine
a great source of the latest diabetes technology & advances, as well as an insightful commentary on living with diabetes. I've pulled many of my D references from her site. Thanks Amy!

To CGM or Not To CGM

2006-04-19T12:52:00.000-07:00

Continuous Glucose Monitoring (CGM) Gadgets

It's hard to believe that just over a month ago, I was despaired at ever having peace of mind when Jack's alone with the kids. And now, I feel as if I've hit the jackpot (not quite gold, but at least silver).

Just over this short period of time, not one, but two CGM gadgets have received FDA approval. After comparing available options, it's clear they each have their benefits and shortcomings. But I'm excited about Dexcom. These are the characteristics that I care about*:
- The FreestyleNavigator seems to have the most potential, but it's still awaiting FDA approval after three years. Listen to the informative presentation from the 2004 Diabetes Symposium.
- The MiniMed Paradigm REAL-Time System is a step closer to the artificial pancreas, but come on folks, it costs $1000 plus $35 (or $40?) per 3-day sensor.
- The Dexcom transmitter has the smallest footprint, and at $500, a lot more affordable. The 3-day sensors each cost $35, but rumors say it's possible to wear them up to 7 days (Abbott is currently seeking FDA approval for the longer use). Matt Vogel's blog about using it

Jack's (Mental) Challenges

Anyway, I've been subtly making all of this information available to Jack, trying not to cram it down his throat. His reaction? (1) He doesn't see the benefit of getting glucose readings every 10 minutes instead of every 2-3 hours. (2) The gadgets are too expensive.

Well, I think, I'm quite sure I didn't marry a stupid man. Someone actually awarded him a PhD once, and he sounds reasonably intelligent in normal conversations. Although, my boss has a theory that PhD's are so focused on the esoteric that the logic of pedestrian life passes them by. Hmmm. Anyway, my crack rebuttals go like this:
(1) It'll be easier to catch highs and lows before they happen.
(2) CGM will help to keep his BG within normal range. Yes, his HB1Ac is always around 5.3, but that only measures his average BG, not how widely they diverge from the norm.
(3) He's ok spending thousands (and I mean thousands, although I steadfastly refuse to know exactly how many thousands) of dollars on two speakers for his beloved/treasured/idolized stereo system, but he complains that a few hundred bucks is too much for the improvement of his health? Hah! Got you there!

More discussions after I get home tonight. We'll see how that goes...

* I guess I should do the disclaimer blah blah: I'm not compensated in any way by Dexcom, nor am I making any recommendations for treatment or gadgets!

An Amazing Night & My Children's Diet

2006-04-07T13:23:00.000-07:00

An Amazing Night

Hurray, last night was amazing. No, no, not in that way (though, don't I wish...).

Baby wakes up for her 2am feeding, and then I stay up reading because I can't go back to sleep. I'm already feeling miffed at this particular parenting book (more on that in another blog!), so my annoyance radar is a bit sensitive. I feel Jack's foot jerk - once, twice. I reach over to check, but he's cool. Is it a hypo or just an exciting dream?? I wait 5 more minutes, and there's the unmistakable foot jerk again. Oh s_, I think and shake him: "Jack, are you low?" A rhetorical question if there ever was one - he has no idea anyway.

Amazing happening #1: He wakes up right away: "I don't know, but I can go check if you want." His kneejerk reaction has always been: "I don't think so!" and then turn around to go right back to sleep.

Amazing happening #2: Last night, he immediately gets up, goes to the kitchen to check, I hear the clinking of a glass, fridge opening. He comes back to bed. He's quiet and lucid and calm. Turns out he was 41, but you'd never have known it. Strange - sometimes he's 39 and completely out of his mind. Then he's 41 and completely rational. So last night was amazing. If only all hypos could resolve like that!

On my children's chances of becoming diabetic

"If the father has it, the risk is about 1 in 10 (10 percent) that his child will develop type 1 diabetes." So my children have 10 times the risk of developing diabetes than the general American population.*

It's clear that genetics predisposes people, but only that and interaction with environmental factors actually causes diabetes. There has been a lot of speculation the last few years on those environmental factors. Some of those factors I can only ignore because they're out of my hands: body trauma, viral infections. Others I incessantly worry about because I do have control over them. This is the stupid part, though. There are no conclusive studies that prove that any one of these is a culprit: length the child is breastfed, time of introduction of soy and cow proteins, hydrolized vs. non-hydrolized infant formula, volume of cow milk injested in toddlerhood. Even the highly-respected Joslin Diabetes Center counsels parents: "To be prudent, mothers of infants at high risk of developing diabetes may want to breastfeed as long as possible and rely on cow's milk only in moderation after the baby is weaned."* Oh, and beware of folks who advocate against children drinking milk at all (I'm convinced they're not so much concerned about the kids' health as much as wanting to push a vegetarian agenda).

The best literature review I've found on this subject concludes: "The question whether milk is involved in the pathogenesis of type 1 diabetes still needs further clarification."**

Jeesh - What's a mother to do in face of such contradictory advice and findings??

Well, this mother drove herself a bit nuts with the first baby: paranoia about not letting anything but breastmilk pass his lips until he was 6 months. Goat milk until he was almost 3, questioning whether she's increasing his risk every time she fills up his bottle with cow milk now. Questioning whether the yoghurt she fed him at 9months will trigger it.

She hasn't learnt and is driving herself a bit crazier with baby #2: Fed her 4oz of soy-base formula at 4 months, and is now questioning whether that'll trigger it (thought at the time that soy had no risks). Is horrified that she fed her beef at 7 months (didn't think that beef contained cow proteins???!!!). Wondering whether she should feed her yoghurt?? It's so healthy & tasty & full of calcium! Should she be denied on inconclusive studies?

Well that's the crux, I suppose. None of these studies has proven anything - as we know, biology and the study of human biology is particularly fickle. If I were to believe and rely on the scientific method, I wouldn't be worried about feeding my children whatever. However, my nagging paranoia (oh, faithful companion) warns me to be cautious. What if one of those hypotheses turn out to be true? I could not forgive myself if either my children were to develop diabetes.

On the other hand (you see, so internally conflicted!), I wouldn't blame any other parent for their child's diabetes. Blame is simply not warranted where there is no intention to cause harm...just as I could never blame my husband if either my children were to develop diabetes.

So I just continue to worry about my children's diet. Not quite convinced that it has any impact, but not quite convinced that it doesn't either.

References:
*Joslin Diabetes Center
**Milk and Diabetes (Jürgen Schrezenmeir, PhD and Alexandra Jagla, PhD - 2000)

Midnight Adventures

2006-03-22T12:14:00.000-08:00

Bleary-eyed from last night... The baby woke up every 2 hours. The Husband was low at midnight. I asked him to check his sugar and he got up, went to the kitchen (why doesn't he just keep a meter on his bedside? I don't know because he won't tell), then came back without checking. I remind him that that's what he was supposed to be doing. We both go into the kitchen and he checks - 46. I pour a glass of juice which he directly puts down on the counter. And he tries to check his sugar again, re-using the same strip. Feeling of dread - are we going to get into a crazy, go-nowhere, irrational discussion? Because we've had plenty of those when he's this low. This time, just a mild scuffle about why he can't re-use a strip, and that his sugar probably hasn't changed since he hasn't had the juice. Ok, he remembers now that his last check was 46 and drinks the juice. He wanders around the kitchen, agitated. I try to calm him down, wait for the juice to take effect.

Meanwhile the baby woke up but I've been ignoring her up 'til then. But now she's starting to wail. Should I stay out here with Husband, or go in with baby before she wakes the rest of the household? I go in to baby because hubby seems ok. He comes back to bed 10 minutes later, whew.

Next morning he's pissed off because his sugar is 266. Turns out he drank a second glass of juice during the midnight adventure after I went to pick up baby. Then he's angry at himself because he did so. Sigh.
But then he says, "Maybe I wasn't thinking straight because I was 46." Wow - that's the first time I've heard him admit anything of the sort.

Thanks to folks who've posted comments. It's really very encouraging for me to keep writing!

Kicks for Nix

2006-03-20T09:47:00.000-08:00

Kicks for Nix

The other day hubby was swaying in the kitchen, uncharacteristically quiet with a little smile on his face. You guessed it, he was really characteristically low. I suggested he check his sugar and he said, "The problem is that it's a well-known fact that low blood sugar causes a euphoric feeling". So he enjoys his "euphoric feeling" for a few seconds more and goes to check his sugar (54). His friends call that his "kicks for nix (nothing)". I suppose that's slightly better than getting kicks from his old recreational drugs - which, I hear, contribute to impaired sperm motility...

To tell or not to tell?

I wonder whether he self-debates to tell or not to tell me. Sometimes I'll walk in the door and he'll bombard me with a litany of his BG readings for the day. He'll usually do that when they've been uncontrollable (182. Bolus. 210. Bolus. Beer. 220) or (58. Juice. 58. Juice. 60 - maybe he should drink beer instead of juice, but I won't suggest that). Writers of fiction use the word "uncontrollable" too glibly:
"Uncontrollable sobbing and crying"
"Uncontrollable gaiety"
"Uncontrollable desire for power"
"Uncontrollable bowel movement"

Umm, ok - that last one I'll allow. But a diabetic unsuccessfully normalizing a BG in the midst of life (physical activity, emotional winds, infusion set temperaments, meal carb and fat contents, ...) - now that's uncontrollable.

On the other extreme of telling and not telling, he was driving us all home from the park last weekend. As soon as he stepped in the door, he headed straight for the fridge and a glass of juice. He checks his BG 10 mins later, and he's 39. 39!! Or, another day we got ready to go to Target and he checked his BG. He drank a juice and drove (I very rarely ask him what his BG is, so I assumed he was in the high 60's or 70's). When we arrived at the store, some 20 mins later, he casually mentioned that he was 41 before leaving. But, he pointed out (almost triumphantly?) that he had no symptoms and that I didn't notice anything, did I?

In both cases he deliberately did not tell me - to what end? So he could drive (not that I'm a bad driver, in my own defense)? So he could prove that he's still in control even when he's so low??? He must truly believe that his low BG doesn't cause any impairment. Or want to believe that.

Sex, lies and videotapes
Well, just the last of the three actually. Goes to show how titillating my life is. Every morning after a nighttime "save", he asks me how I knew that he was low. I describe the shaking, foot-jerking, sweating, incoherent ramblings. And the next time, he asks me again, almost as if he doesn't believe his body could morph that way. Even 8 years ago, 5 years into our relationship, he consistently refused to drink anything when I woke him in the middle of the night. Out of desperation, and a sneaking-suspicion intuition that his conscious beliefs did affect his hypoglycemic behaviors, I videotaped him. We watched the inky dark pictures the next morning and he seemed mystified, angry, and embarrassed at the man with tightly-pressed lips who was turning his head away from the juice I was trying to give him. He apologized to me, which nearly broke my heart. Since that very day, he has not once refused any juice or glucose I've given him at night.

Nightmares and Insurance

2006-03-09T14:17:00.000-08:00

Yesterday hubby went to pick up older kid from school, then ran an errand with him. Before he left the house, his BG was 98. When he returned 40 minutes later, it was 36 (he didn't notice). Again, nightmare scenarios flit across my mind. What to do? Maybe I should ask him for solutions; the problem is convincing him that there is a problem.

That so clearly illustrates the inadequacy of single BG monitoring. They're only a snapshot in time, entirely missing trending: Is the BG going up? Plummetting down? No way to tell unless you check yourself at continuous intervals. And who has the time, or tolerance for pain, or money for the test strips to do that? And while I'm at it, here's the rant against insurance companies. How ridiculous is it to not cover test strips??! How do those not fall under the rubric of "medical care"? The companies do pay for yearly checkups (preventive care), why not test strips? Don't those provide preventive care as well? Here's the math: my husband spends about $200 on test strips per month. One ambulance trip to the hospital costs about $1000. For one trip (and we're not even counting the cost of hospital care, if only to monitor for x hours), you have 5 months' worth of strips.

Kids & safety; Dogs 4 Diabetics

2006-03-06T10:56:00.000-08:00

My nightmare as a parent

Yesterday was a wake-up call (besides being no, no fun). We had gone to a restaurant for lunch, it was small with only a handful of occupied tables. Because of these circumstances, it was the first time my utter paranoia allowed me to not have my 3-year-old in sight (I usually have him within my sight every second we're out of the house).

Well yesterday, he decided that he was done with lunch and climbed out of his chair. The baby fussed, so my husband lifted her from her seat onto his lap. When I looked back for the older one, 10 seconds later, I couldn't see him. The next 10 minutes were bedlam as I ran around, ran outside back, ran outside front, calling for him. 10 minutes doesn't sound like a long time, but for a parent searching for a missing toddler, it's eternity.

My husband finally found him under our table, playing hide-and-seek. The nutty kid was laughing, delighted at having tricked his parents.

Lessons from this incident?
1) Continue being paranoid about keeping the kid in sight.
2) Always tie him to the high-chair (must figure something out with chains because he can un-click himself)
3) Decide what to do about husband going out alone with nutty kid.

#3 has been simmering for a long while now (3.5 years, to be exact). The worst scenario is that hubby becomes severely hypo and loses track of kid or cannot adequately supervise him. Couple this with the fact that hubby does not share my paranoia and does not keep him in sight every second. I remember reading about a study which found that fathers had a higher tolerance for having their children out of sight than mothers. That's certainly true in our case.

So until they find The Cure, or husband's on some sort of continuous BG monitoring, what are the choices?
1) They never go out alone, and I resign myself to tagging along to Circuit City and Sportmart for the next 10 years. Hubby's response is that he's always brought the kid back before, right?

2) Make sure husband's much more vigilant when they're out, although I'm always on pins & needles until they safely return. How to "make sure"?? And I'm sure there are many, many, diabetic parents who take care of their children alone on a regular basis. How do they make sure they're safe?

Dogs 4 Diabetics

Just had to share news of this organization. Unfortunately, they currently only operate in the San Francisco Bay Area, and only for type 1 or brittle diabetics.

They train dogs to recognize the early signs of hypoglycemia. I think it's absolutely amazing. This is non-invasive continuous BG monitoring! According to them, the dogs recognize a dipping BG before the person exhibits any behavioral symptoms.

And yes, I did suggest it to my husband, but his immediate response was that he doesn't want a dog. Ok, I understand his reasons (he had 2 pet dogs die terrible deaths when he was young). I could probably push him, but I also vacillate between the benefits (Continuous BG monitoring! Safety for him and the kids!) and the cons (how much energy/time/room/money do I have left over after the full-time job, the toddler and the baby? and do I want to subject my kids to unnecessary pain when their pet passes away?).

The organization is supposedly doing research on how the dogs achieve their detection. Wouldn't it be incredible if they could isolate those chemicals and create an electronic detector?

Continuous Glucose Monitoring & Nagging

2006-03-03T09:25:00.000-08:00

Continuous Glucose Monitoring

I've spent the last week delving into the shady (so much info, so much still lacking) world of continuous glucose monitoring. Imagine my excitement when I stumbled on "LifeAfterDx--The Guardian Chronicles: A internet journal from one of the first T1 Diabetics to use the Guardian RT continuous glucose monitor." What a great read! But disappointingly, the RT (1) is only available in select US cities, (2) is not yet covered by insurance (sheesh, the whole shebang's expensive), and (3) requires the hubby to carry another monitor (he's currently on a pump). He already gets grumpy carrying his regular BG meter with him. So, I'm not even going to suggest this to him for now.

Additional delving leads to the discovery of "Use of the Paradigm 722 System to Improve Glycemic Control in Adult and Adolescent Subjects With Type 1 Diabetes". The 722 eliminates the extra monitor because it's integrated into the pump... And clinical trials are usually free to participants... And there's a recruiting site 3 miles away from us!

I excitedly email hubby the link. When I get home, his reaction: "I think I want to wait because it's not exactly what I want." What he wants, of course, is a pump which will automatically adjust the insulin delivery based on his BG. I want to scream. But I just look angry and convince him to call them.

...The next day, I call him from work to nag him again to call them. Which he does. But another disappointment - this site is only recruiting 12-17 year olds.

Nagging
*A note on "nagging": Perpetuating the stereotypical wife-as-a-nagging-shrew? Yes, but damn the man, I have to force him more often than not to take care of himself:

Me: Go see the doctor for that lung-expelling cough you've had for the last 2 months.
Him: What can they do? It's getting better anyways.

Me: You're low. Can you check your sugar or drink some juice?
Him: I'm not low.
(repeat that last exchange about 5 times then go to the next exchange:)

Me (He's obviously low. His BG must be in the 30's): Here, drink some juice.
Him: I'm not low. No!
(repeat that about 6 times. What do I do now? Wait until he passes out to stick some glucagon into him?)

Ok, so it's gotten slightly better lately. He'll actually go check his BG or drink juice when I give it to him. We're still working on the driving when his BG is only in the 50's:
Me: Let me drive, you're still very low.
Him: But I'm totally in control.
Me: You think you're in control, but you're still very low. Let me drive.
(repeat last exchange 6 times). Meanwhile, I'm getting angry, he's getting angry.

It must be all about control

He was diagnosed when he was 20, in the prime of his wild oats sowing. When I met him, he was 33 and still wildly out of control (his BG regulation, I mean). He was adamant about not letting diabetics control or hamper him. Which in theory was possible. He was put on the pen (long-lasting at night, fast-acting during the day) a year after his diagnosis. He was very proud of the fact that he could eat whatever, whenever he wanted. Well, I lost count of how many hypo's I helped him out of the first few years (more on those in future posts). In his mind, he was in complete control.

My arrival into the picture coincided with better regulation because I was nagging him. So when he fights me helping him with his regulation, I suppose he's fighting: (1) handing more control to me, (2) admitting that he does not have complete control over himself, and (3) admitting that the diabetes does affect his life. #3 is a strange one, considering the obvious impacts on his everyday life, but denial will take you a long way. And after 13 years of marriage, I know how stubbornly he can deny...

I try to be sympathetic, I really do. But when it's 3am, and I'm getting up for the 3rd time that night (toddler nightmare, baby nursing, husband nosediving into a hypo), and he doesn't want to drink/eat anything for his hypo, I do get angry at him. Then I feel guilty, because he didn't ask for it, did he? And he's so low, he's totally out of his mind, so how can I expect him to be rational?