Dr Jekyll and Mrs Low

Poetry Parody: If A. E. Houseman had diabetes

2011-12-22T15:41:00.000-05:00

So tomorrow is my quarterly fasting blood draw. Does anyone else get the feeling they're "off the hook" for a few days right after their a1c gets taken? (Or am I the only bad diabetic out there?). I've been congratulating myself on synching up my "free" period with Christmas this year - a smaller than usual family gathering of just 30 people at my house....

Anyway, with apologies to A. E. Houseman and his cherry trees:

Loveliest of treats, the pastry now

To bolus for I know not how

My blood just drawn, they’ll never know

Besides, I think I’m headed low

Since in just four score days and ten

They’ll check my a1c again

In lifelong marathon ‘tis clear

I need a break four times a year

For all the times I really try

Despite best efforts, shoot sky high

It’s to the bakers I will go

To have a treat when it won’t show

The construction experiment, or DIY diabetes camp

2011-09-02T21:05:00.000-04:00

OK, as long as I just accidentally posted a camp blog update on this site, I will actually do a quick update.

At times I’ve wondered, if I were more active, if I didn’t have a desk job, would my BG control be better? It always seems to be on vacations or during weekend gardening binges. But what about a whole lot of activity, all day, for a couple of weeks?

Years ago, as part of a plan to always have something to look forward to (and right after my dx with T1) we purchased a wooded lot in the adirondacks with beach rights at a small lake. For years, we’ve planned our camp - I’ve spent many hours sitting on the windowseat in my “castle room”, making sketches and looking through books for the perfect camp.

It would be small. It would have a loft and a catwalk. Since our lot was sloping downhill, we hoped for a walkout basement. We’d start off with just a place for the summer, eventually insulate and heat it.

And so we planned, and set funds aside, and finally got ready to build. Since we couldn’t find anything close to my dream camp in our budget, we decided to cut out the labor costs by doing it ourselves. We wound up being our own general contractors and arranged the driveway, well, septic, foundation, permits, and inspections. We bought a pre-cut kit and worked with the kit architect to get all our “must-haves” in.

We arranged the delivery day for the start of July, and took three weeks vacation, renting a cabin a short drive away to get us started.

Turns out, with weeks of 12-hour days hauling lumber, going up and down ladders, and swinging a hammer, my daily BG wasn’t any better than at my desk job. I think the stress canceled a lot of the activity out. And believe me, there was stress. Nothing was ready on time - we didn't have a foundation until a week after the kit was delivered. Things went slow. It either thundered or went over 100 degrees. Family crises kept drawing our attention back home.

But, we are still working on it. It's moving along. And even if my BG doesn't seem to care if I'm programming or hauling lumber, the rest of my body is in great shape. And next year, when it's a relaxing vacation getaway, maybe then my BG will behave!

TCOYD Albany

2011-06-12T10:16:00.000-04:00

On Saturday I went to the TCOYD event in Albany. My husband and I had gone last year to Providence, but it’s nice to get a refresh of the camaraderie and spend a day around other people who “get it”. (My husband came this time too, but had to skip out after the morning sessions). Plus, there was the great opportunity to meet with some online bloggers - like Karen and Abby (the Person). Of course I didn't bring a camera and am spacing on the blogs of the others in attendance, but I figure Karen will post hers up soon and I'll be off the hook by virtue of having linked to her. (Sorry, Karen - but if I wasn't lazy I'd have done D-Blog week...)

The conference was smaller than Providence - but it was also right in my backyard. I’d expected smaller - this is Smallbany, after all - but found a few things disappointing. Lunch, for one. After morning lectures talking about how you should eat healthy, less-processed foods, and eat what you like in moderation, our box lunch consisted of choice of sandwich, carrot and celery sticks, a tiny container of low-fat ranch dressing, and a pack of “no sugar added” cookies - 21grams of carbohydrates, high in fat, plus the warning label that “excess consumption may have a laxative effect”. Yum, yum. Two Newman-Os would have been lower in carbs and fat, not to mention much better tasting. [I realize I mentioned Newman-Os in my last post too, which makes them two-for-two this year....]

The other disappointment was during the afternoon programs. The first session was pretty evenly split along “type” lines: either “Type 2 Treatments: Orals and Injectables” by a local endo, or “The Latest on Pumps and Continuous Glucose Monitoring Devices”. I chose the latter, even though I’ve been wearing a pump for seven years and a CGM for five and a half, joking with Karen, Tina and Abby that if there was no new information, maybe at least I could heckle the presenters.

As it turns out, we all did. OK, so not heckle, exactly, but when a presentation called “The Latest” in 2011 has slides talking about how Dexcom has a 3 day sensor with no arrow displays or 24 hour screen, I was compelled to point out that the Dexcom STS was five years ago, and she needed to update her slides with the Seven Plus which could do all those things. Then she went on to say that Minimed has an integrated pump/receiver, but her info was also out of date and didn’t include the Revel or its features. Oh, and she kept calling the “receiver” of both systems a “transmitter”. And most of her descriptions of the MiniMed product were in reference to the 3-day “Pro” version - no screen, that you wear blind and download at the doctors. Not really what people interested in getting a CGM want to hear about, although I’m sure it is still a valuable tool to be used if you are a health care professional with patients who cannot get a CGM of their own.

Perhaps one of the worst disservices of the lecture was showing a screen with four graphs and data lines scribbled everywhere, and saying “this is how the software provided can help your doctor adjust your treatment”. It probably scared off anyone even thinking of a CGM. I mean, I was in the FDA approval study for the MiniMed 722 in 2005, and even then their software had many more user-friendly and understandable displays. Dexcom’s software is kind of lame, but again many times more useful than the crap they showed.

At any rate, our little “blogger” cluster turned into the most vocal section of the audience, and afterwards we got to talk to several of the prospective pumpers/CGMers in the audience. In fact, maybe we should have grabbed some of the logos and set up our own fake programming track: “Sugar free is just more processed crap”, “Ask a real user about pumps and CGMs”, “You are not the only type 1 dx’d as an adult”. Hmmm.. next time...

However, despite the disappointing session, the rest of the conference was still great, and definitely worth the time to attend. Even if you learn nothing new, you still spend a whole day thinking about your diabetes (which, let’s face it, when else would you be doing that?), and getting reenergized by being around other PWDs of any type who are interested in improving their health.

Next year, though, I'm bringing my own "session" signs.

Eu-Brain versus Low-Brain

2011-05-20T09:52:00.000-04:00

Typical conversation between my euglycemic, rational, brain and the hypoglycemic version:

Eu-Brain : Hey, Dex just beeped. Check it out.

Low-Brain: Nah. You have got to pee. NOW!

Eu-Brain: Okay, but remember, that’s one of your chief low BG symptoms.

Low-Brain: Don’t worry about it. Hey, you were supposed to start the laundry, remember? Why don’t you just sort the stuff out now?

Eu-Brain: I don’t think this is such a good idea...

LB: Relax. It will only take a few minutes.

EB: Yeah, but you were 64 with 2 units on board half an hour ago, and we treated with orange juice, which never sticks around....

LB: Oh, come on. All that insulin on board will be gone by now. You’re fine.

EB: Laundry sorting is done. Time to test.

LB: Wait, we’ve got online bills to pay. Check those out.

EB: No! Test. NOW. I’m waiting.

LB: Look! Shiny!

EB: 58. Told you. We need to treat that.

LB: That’s not so bad. Let’s grab the mail first and then get a snack.

EB: Grab a juice box off the counter and drink it.

LB: How about a nice glass of milk instead?

EB: I really think the juice will be faster...

LB: Yeah, but it burns off and you’re low again. Plus, you just had your first cavity in ten years. Milk would be better than juice.

EB: I suppose so.

LB: Mmm. Tasty. Know what would go really good with that?

EB: No, we are *not* going to overtreat!

LB: A cookie. Think how yummy it would be. Double Chocolate Newman-O. Your favorite.

EB: No, you don’t need that. Get away from the cupboard!

LB: You need six.

EB: Stop! You’ll regret this later! What the hell are you doing???

LB: Don’t listen to him. He was wrong about that orange juice, wasn’t he?

EB: That wasn’t me. And no more cookies! At least drink your milk, the cookies are too slow.

LB: Just shut up, why don’t you?

EB: We’re done eating. What was that, eight? Did you count? We’ll have to fix it later, for now just sit down and rest until Low-Brain nods off.

LB: Heck, we can fix it now. I bet eight units -

EB: Don’t you dare! Go sit down. Surf the web or something.

LB: We still have those online bills.

EB: We are not, repeat, not going near the bills now. Find something harmless to do or we’ll regret it later.

LB: Yawn! I suppose we can write a blog post...

EB: Good idea. If you ramble too much, at least Sprinkles will understand...

Wanted: day off. Will pay anything.

2011-04-20T08:59:00.001-04:00

So I’ve been fighting really high BGs since Friday evening. I’m talking average of 300 high – about double my usual levels. Not helped by bad allergies/possible sinus infection, either.

2am Monday night (ok, tues am) I wake up with all the symptoms of a bad low – pounding heart, shaking, sweating. Test – 453. Wonderful. After a do-nothing correction (and reading for an hour rather than falling asleep and needing an ambulance in the morning), I ripped out the site, change the whole pump setup, stayed awake for another half hour to make sure it was dropping, then went to sleep.

An hour later I rolled over and literally grabbed the mattress and screamed because it felt like I was on a tilt-a-whirl ride and was being dumped off. BG still 307. BP (when I made hubby get up and dig it out of the closet) was 110/62, so I wasn’t actually dying. I guess what happened was all the sludge in my sinuses solidified around the doohickey that controls your balance, so then the slightest move sent the room spinning big time.

Needless to say, one does not drive in to work like that, even if one had a full nights sleep. I gradually worked my way over to the other side a bit at a time and went back to sleep. It was hubby’s work from home day so he came up to check on me every once in a while and I didn’t get up to have breakfast until almost ten. BG was about 270 at that point, but I’m sick, so not surprising. Spent the whole day napping on the couch with about the brain power of an acorn squash.

After dinner (BG 220 before/385 after) I took a massive correction and went to bed, telling hubby to wake me in 90 minutes to see what correction did (nothing). So I take a second correction, this time by injection, and slightly lower since I don’t want to kill myself if the first correction suddenly starts working too. This one works, so I rip out pump works and redo again, and by 11:30 seem to have stabilized around 180, which is on the high side but nothing I want to fuck with before sleeping.

So at 3:30 am I wake up to see Dex reading seventy with two arrows straight down – four hours after all the extra insulin should have been out of my system. I slurp down a juice box and drop to 50 15 minutes later, so send hubby downstairs for a big glass of milk and drink that too, then wait another 40 min to make sure I’m going up again…

Wake at 270. Correct, shower, test. 180 and starving. Breakfast, bolus, work. Test. 375. Correct.

What really gets me is the best I can hope for is a day that isn’t too much work. Which is not looking too likely today. There is never a day with no work, no matter how badly I could use one…

The eleventh clue

2011-02-14T08:41:00.000-05:00

So in my last post, I talked all about the ten clues that your insulin might be going bad. On the way home friday, I stopped at the pharmacy and exchanged two dead bottles (both different lot #s, btw) for fresh ones. Bottle #3, which had misbehaved at my first meal after opening, had settled down and seemed to work fine, and was yet another lot # from the others.

Remember how I mentioned that once your brain is in diabetes overload, and things seem to be "fixed", it turns off? Well, guess what? Mine has been in troubleshooting mode for over two weeks, and so this morning I woke up to:

clue #11 - ketones - yup, sometimes it all slips by you until you wake with a 350 point rise overnight, moderate ketones, and feeling like Indy's stunt double after the dragged-behind-a-truck-by-your-bullwhip scene. Nothing left to do but break out the syringe, yet another bottle of insulin, chug a gallon of water to try to flush things out, call in sick to work, and hope that things will be better tomorrow.

g'night all.

PS - I did decide to swipe the red-bearded Viking setup from Number Three Son, and keep that on the current bottle on my dresser, because every time I look at it I crack up.

How to Identify Bad Insulin

2011-02-10T20:06:00.002-05:00

The suspects

Over the past few years, I’ve had a great deal of practice at identifying bad insulin, unfortunately. So much practice that I’m about to give up on Apidra entirely. When it works, it’s great. It’s turned my Dexcom shots from Charlie Brown’s tee shirt to gently rolling hills. BUT I’ve gotten bad batches from at least 3 different pharmacies. So either the local distributor is bad, or the insulin itself is so flaky they can’t control the strength. Add to that, it’s off formulary for my new insurance, so my copay is five times what it used to be, for something that more and more frequently just isn’t doing its job.

In a perfect world (scratch that, in a perfect world I wouldn't need insulin)...In a reasonable world, there would be a test to check your insulin. It doesn’t have to be a perfect test (hmm, this bottle scored a 93 and my last was a 96). I would settle for something from the insulin Dark Ages, involving tablets, fizzing, urine (even someone else’s urine!) and ambiguous color changes: Now it says chartreuse is good, but this is more of a celadon...

Anyway, I’ve unfortunately had to come up with my own checklist, because we’re all conditioned to assume it’s our bodies, not our insulin, that is the problem. See “litany of blame” in this post.

Here it is:

Clue #1 - unexplained spikes from “safe” meals - I eat the same breakfast every day. It usually does the same thing (if by usually you mean about 70% of the time): I gradually climb 100 points or so, hover 15 minutes, then drop like a rock around 10am, which I stave off with a single Dove Dark (hey, whatever works, right?). Final result, nice and level in the 80s just before lunch. So when my typical breakfast launches up like the space shuttle, peaks around 300, then drops like the spent fuel tanks, I start to wonder...
Clue #2 - basal creep - this can take two forms. The first is the “that’s odd, I’m 20 (30, 60) points higher than I usually am at this time of day” reaction. Correct and move on, right? The second is the “Hmm, maybe I’m coming down with something. Let’s set a temp 170% basal for a few hours and see if that helps”. Eventually basal creep leads to 150+ point rises overnight, which is when I start getting suspicious.
Clue #3 - corrections don’t help - Darn it, I corrected for that 240 hours ago - why am I still 208???
Clue #4 - altitude changes - My gentle hills on the Dexcom change to the Rockies and then the Himalayas. Sometimes it looks like a normal day, only shifted upward by 80 points.
Clue #5 - site changes don’t help - you pull the site, nothing’s bent, bruised, puffy, bloody, or leaking. Repeat as needed.
Clue #6 - rage boluses DO help - It says I only need 1 unit to correct, and there’s a half unit still active - let’s do the whole unit anyway. No, two. Three! Bwah-ha-ha-ha!!! Then your BG goes back where it is supposed to be, and your poor brain, already in diabetes overload from a few days of troubleshooting, tells you the problem is solved, we’re all back to normal, and turns off.
Clue #7 - “overtreated” lows - if your rage bolusing sends you low, your normal low treatment looks like you emptied the entire fridge. So much for hitting the normal range for more than twenty minutes today...
Clue #8 - injections don’t help - after a few needless site changes, you break out the needle and try that (sometimes combined with a rage bolus, because at this stage you are grasping at straws). It lowers your BG - a bit. Maybe 60% of what you expect. What the heck is going on here?
Clue #9 - new bottle DOES help - You grab a fresh bottle, do a site change - and it works! You go from being tied to the mast in a hurricane, with alarms ringing, waves that threaten to swamp you, and dragons swooping down to poop on your head, to a paddle boat in a park, with rainbows, unicorns, and puppies. Why on earth did it take so long to figure this out???
Clue #10 - it starts all over again - If your fresh bottle was from the same batch, there’s a good chance it slowly turns once opened. If you’re unlucky, like me this month, “slowly” becomes quickly.

This months 3 bottle supply of Apidra went down one right after the next. Bottle #1 lasted 4 days before the weird symptoms started showing. I jettisoned it 3 days later. Bottle #2 gave me 12 hours of blood sugar nirvana, then turned to dishwater by day 4. Bottle #3 kept me level at 80 for 4 hours.... then launched into the stratosphere with a single sandwich and my usual bolus. Tomorrow I take all 3 back to the pharmacy, but I don’t think I will be replacing them with more Apidra at this point. I figure staying in the Rockies is better then alternating between gentle hills and Himalayas...

Why I will never get an A in Diabetes Math

2011-01-31T20:09:00.001-05:00

Simplify. Solve. Repeat.

127bg + 20g carbs - 4 units insulin + 3 hours housework = 232bg

232bg + 40g carbs - 3 units insulin + 30 minutes sitting in car = 180bg

180bg + 10g carbs + 5 min waiting to get trail pass = 70bg

70bg + 30g carbs + 15 min cross country skiing = 42bg

42bg + 15g carbs + 60 min skiiing = 82bg

82bg + 30 g carbs + 90 min skiing = 559bg (recheck: 508bg, which is really the same number given meter accuracy)

559bg - 3.2 units insulin + 90 min waiting = 395bg

395bg - 1 unit insulin + 2 hour nap = 120bg

120bg + 10 g carbs + 2 hours loafing and feeling like crap = 187bg

187bg + 3hours sleeping = 51bg

51bg + 15 g carbs + 3 hours sleeping = 237bg

The Diabetic’s Dilemma

2011-01-29T14:18:00.000-05:00

I have an infusion set in, that was due to be changed this morning. And it hurts! It gave me that stinging-sore, probably-bent-the-cannula feeling going in, and it’s being doing the itchy, achy, give up and change it feeling ever since. Plus, it’s right where the waistband of my jeans rubs, so sitting down puts even more pressure on it, making it more uncomfortable.

I really ought to pull it out. Even if if hadn’t been bugging me, the three days were up this morning, and I generally do best changing every two or three days.

But here’s the clinker: my blood sugars have been fantastic!!! I’m talking no-hitter for over 60 hours (OK, a few lows and quite a few extra snacks as things get close to my low threshold) and that’s with my Dexcom set at 80/160. And the only reason I broke 160 last night was because I went out for a fancy dinner, involving wine, fresh bread, potatoes, palate-cleansing sorbet and chocolate lava cake - and even then after a few hours I drifted down to 101 without correcting after a conservative bolus.

So I’m trying to figure out: is it one of those rare breaks from the chaos gods - because believe me, even with major effort I can seldom manage 12 hours between the lines, not most of three days. Did a few beta cells manage to grow while my immune system has been busy taking down another organ? Is it the infusion set itself - maybe it’s nicking into a small blood vessel or something making the insulin work much quicker? If so, how often can I find that spot again?

I don’t know, but whatever it is, I don’t want to screw it up. Which means keeping the site in place until my BG starts doing its usual Charlie-Brown zigzags, or the pump reservoir is empty, whichever comes first. With any luck, I can make it to lunchtime tomorrow.

Wish me luck - if you need me, I'm in the kitchen watching my BG go up just 30 points and back down on its own whenever I eat a double-chocolate Newman-O!

Trust

2010-11-14T09:43:00.000-05:00

When you glance at your monitor before shutting off the reading lamp, and it has you 98 and dropping, even though less than an hour ago your fingerstick was 130 and you haven’t bolused since dinner and you’ve been flat overnight for weeks, you trust it. You drink a juice before turning out the light, and you go to sleep.

When the low alarm wakes you at 12:30 am, and says you’re 65 and that bedtime juice did absolutely nothing, you trust it again and set up a new juice box in the dark, slurp it down and toss the empty off the side of the bed.

When it goes off again at 2 am, claiming you’re 48 and you need more juice, you don’t exactly trust it, but you figure correcting a high later is better than risking a low, and besides you’re too tired to deal with dragging out the meter to double check, so you drink yet another juice.

When sometime in the still pitch black night, your own body wakes you, covered in sweat, heart pounding, limbs shaking, and mind so frozen with terror you can’t even speak, you can only let out a kind of high pitched whine, you trust your husband will hear you, wake up, and ask if you’re OK. And you trust that when you gasp out “More juice!” he grabs another one off the headboard, gets the straw in, and makes sure you drink.

And when you wake to a fingerstick of 61, a bladder the size of a volleyball, and a brain that feels like its been taken out and run over during the night, and send another juice box over the side before you even get up for the toilet, you trust that it was just a fluke, that your guardian angels mechanical, metabolical, metaphysical, and marital will continue to watch out for you, that it will be OK to go to sleep again tonight, and tomorrow night, and the night after that.

But as you struggle to get on with your real life during the day, you have to trust that there are people out there, who understand that this is much more than just an inconvenience, that insulin and meters and monitors are not a cure, that even constant vigilance cannot give more than an illusion of control over a broken body.

And you trust that they’ll keep trying, that despite battles for funding and dead-ends and discouragement, you trust that some one, some where, some time, will come up with the key to unlock this prison, to free us all from this undeserved life sentence.

You trust. You have to.

Diabetes Art Day

2010-09-01T06:59:00.000-04:00

This is Every Day

The Insulin Nazi

2010-05-04T18:58:00.000-04:00

This is a copy of a letter I plan to mail out once I calm down. Apparently I have to choose between the friendly-but-incompetent pharmacy that keeps giving me bad insulin, or the effective-but-infurating one I dealt with today:

To Whom it May Concern -

I am writing to complain about unauthorized altering of a prescription by one of your pharmacists at CVS #XXXX. I presented the pharmacist with a valid prescription written by my doctor for 3 vials of insulin per month, with three refills. This is a dose I have been taking for years and filling without issue at a non-chain local pharmacy. My insurance company has never had any problem with this amount.

Last month, when I brought the new prescription to CVS, the pharmacist at first only gave me a single bottle of insulin. When I told her it was supposed to be three bottles, she said she needed to know how much insulin I took per day. I told her that the amount varied greatly because I was on an insulin pump and had a variety of issues affecting my insulin sensitivity on a day to day basis (as do many people with diabetes).

She said she needed to calculate what a thirty day supply of insulin would be. I replied that a thirty day supply was what my doctor had written the prescription for - three bottles. The pharmacist replied that she needed a number. So I told her it could go as high as seventy units per day.

She said 70 units times thirty days would be 2100 units, and rounded down to two bottles (2000 units total). I was in a hurry and needed to leave, so I agreed to the two bottles and was able to leave with my partial prescription.

There were a few problems with her calculation. First, it assumes I can get every unit of insulin out of the bottle with no waste. This is physically impossible. Second, it does not take into account that I use an insulin pump with 43 inches of tubing. This tubing must be primed (filled with insulin) every two days when I change my infusion site. It takes a minimum of 21 units of insulin to prime the tubing, insulin that is discarded when the site is changed. Third, it does not take into account that the very nature of diabetes is change. A huge variety of factors can cause your blood sugar to rise, and very few of them are within a patient’s control. Infusion sets get accidentally torn out, hormone levels change, other chronic conditions interfere with insulin sensitivity. Three bottles was the amount determined by me and my physician to keep me healthy.

What I actually should have said was on a typical site change I load the pump with 150-175 units of insulin, and change it every two days, but I was thinking “dose” not “priming plus dosage”. This comes out to be about 2500 units of insulin - clearly more than two bottles.

Also, I was not expecting to have to justify my doctors written directions. Do patients with infections have to argue that 250mg of penicillin should be enough if the doctor had prescribed 300mg, or do I need to worry that this pharmacist will suggest that I only need to take Synthroid for six days a week?

Since I still had a partial bottle at the time I filled the prescription, I was able to get through the month and figured I would explain as I picked up my refill that she had miscalculated the amount I would need. That ran into a few snags. First, my phone refill was not ready on the day I stopped for it. They said it would be in by the next day so I agreed to come back then. On the following day, a violent thunderstorm had knocked out the store’s power shortly before I arrived; the pharmacy’s computer was still running on back up power and I had cash to pay for the prescription so I thought I would be in the clear.

Once again, I was given a single bottle. Apparently, while modifying my prescription to fit her idea of my doctors directions, the pharmacist wiped out all my refills; instead of nine bottles doled out stingily two at a time; only one bottle was left on my record. After several minutes of arguing I was able to leave with my single bottle - no charge. Of course it should be no charge, it was part of the incomplete original thirty day prescription. I agreed to return again when the computers were up to try and straighten out the issue.

This mix up would not have occurred if my prescription was filled as written, and I would like your assurance that in the future your employees will not attempt to second-guess my physician.

I am not a junkie; I am not selling extra insulin on eBay or sharing it with my friends so they can experience the joys of a life-threatening insulin reaction. I simply think that your pharmacist should not be determining my quality of life, simply because she suspects I might be trying to cheat my health insurance company - a company that has never once complained about the amount of insulin or test strips I use per month.

I am sending copies of this letter to the local CVS pharmacy, the CVS customer service, my doctor, and my health insurance company.

(...And of course posting it on my blog to be read by diabetics everywhere)

My dying apridra comments were eaten by blogspot

2010-04-12T08:44:00.003-04:00

For some reason blogspot keeps saying I have no "unmoderated" comments, but a friend said she posted last week and comment never went anyplace... If you commented on that post please try again on this one (or that one) and hopefully it will work this time....

Is your Apidra dying early???? Commenting Fixed, I hope

2010-04-09T06:57:00.004-04:00

NOTE - blogspot decided I don't need to see any comments for some reason. I had to turn off comment moderation. Any comments on this post went into some kind of black hole, so please recomment if you said something before...

I live in upstate New York, I've tried two different pharmacies (an independent and a CVS) and I seem to run into issues with my Apidra dying about 10 days after opening a vial. It can't be my fridge as it happens even with the first vial I bring home from the pharmacy, which gets opened and set on my dresser.

This has been happening on and off since July, but it's gotten really bad since Christmas. I'm talking like 80% of the insulin I open lasts a week. Has anyone else seen this???

My last two bottles (different pharmacies, both not very effective after 6 or 7 days, and virtually dead by 10) are from lot numbers 40C413 (exp 7/2011) and 40C419 (exp 9/2011).

Anyone out there with those lot numbers, can you let me know if yours works? I suspect all the local pharmacies may get supplied from the same place....

Thanks!

Eeeww!

2010-02-22T16:52:00.002-05:00

So I just got in the door from work, and Numbers Two and Three Sons meet me at the door. "Puzzle got a mouse."

What, in the house? "No, outside. We brought her in and put her in her crate. The mouse is on the patio." Puzzle is a sixty pound Labradoodle, not a cat, BTW. She has also gotten rabbits and once a possum (that got up and ran off after playing dead on our patio for an hour).

So I grab a bag and to pooper scooper, figuring I'll tie it up and toss it in the barrel. Kids get so squeamish. I walk to the back patio, glance around, then turn toward the door.

Mouse my a$$! There was an ENORMOUS, DEAD RAT right next to my back steps. We're talking larger than most squirrels.

I knock on the back door, request a larger bag, gingerly lift said enormous rodent by the tail using the scooper - "Jaws" - and drop it in the bag. A few minutes before I can touch the bag and tie it shut. I wheeled the barrel out of the garage and then put the bag in it.

If you need me, I'll be hiding in my room, watching the adrenalin based BG spike....

Losing It

2010-02-04T14:28:00.004-05:00

I broke an almost-new bottle of insulin this week. It had been opened less than 48 hours, had only 150 units removed. It wasn’t an accident or a cat attack, though.

The short story is it broke because I threw it at a wall. Twice.

The long story starts with it being a typical day at work. Getting ready to drive home, I tested at 160. Which was kind of high for that time of day. But, I was about to get in the car so I figured I would keep an eye on it and check again after I got home.

Now, at home this wasn’t a typical day. This was Number Two Son’s 13th birthday, so we were skipping most of our kids extra activities to stay home and celebrate as a family. So from the minute I got home I was rushing around, trying to hustle the boxes from Amazon upstairs, clear the table, and work on dinner. Normally Number Two Son helps me prepare, but since it was his birthday he had the day off.

Brown rice, chicken with spicy Thai basil sauce. I start the rice, start digging out ingredients, chopping veggies, and getting it all set to cook. I run around, glancing down at Dex. About 170. Well, not great, but I’m too busy to deal with that now, I will just add in a correction at dinner.

Life happened. Grandparents stopped in to see the kids, husband was late trying to pick up the cake on the way home. As grandparents leave I resume cooking, really hungry now. Chicken smells amazing. Even more so as I add the fresh basil, ginger and garlic and that wonderful smell fills the kitchen. Husband arrives home, with carrot cake and Samoa Girl Scout Cookie ice cream. I add the curry paste, broth, and cornstarch and give one more stir. Dinner should be ready in five minutes - just an hour later than originally planned.

And then it happened. That sudden metallic taste at the back of my mouth. High. I glance down at Dex. Crap! I wash my hands, test. 379. Nooo! Now here is where I doubt the conventional “being high makes you cranky” symptom. I felt absolutely fine until I saw that number.

I got cranky pretty damn fast, though.

You see, I should have been expecting this number. Two days before, I had to jettison a half-empty vial, because my numbers were running high and I’d realized, after opening the new one, that it was from the same lot number and might cause a problem too. But the first 36 hours had been fine, nothing that couldn’t have been explained by typical D fluctuations.

But with the 200-points-in-two-hours jump, I knew exactly what it was.

“I can’t eat, I’m high. This is ready. I’ve got to go up and pull the site, I’ll be down when he opens his presents.” I grab a fresh vial from the fridge (different lot number), and I go upstairs, the smell of that incredible curry following me.

At least knowing it was a bad batch saved me from the usual litany of blame:

1 - Is it me (miscalculated the carbs)?

2 - Is it me (forgot a bolus)?

3 - Is it me (missed seeing an air bubble)?

4 - Is it me (caught site on clothing)?

5 - Is it me (should have changed site earlier)?

6 - Is it me (didn’t do my usual exercise)?

etc, etc, up to about

129 - Is the insulin bad?

I was able to cut right to the chase, yank out the perfectly good site, fill the pump with new (and cold!) insulin and blast in a correction. Then I sat at the edge of the bed. I should have used a syringe to correct - but I knew I had essentially been pumping dishwater for the afternoon and the fresh Apidra should fix it. And that’s when the meltdown began. I didn’t want to be here, didn’t want to have to deal with this, wanted to be downstairs with my family eating a yummy dinner, followed by birthday cake, ice cream, and no thinking.

And it’s not just the two duds in a row that got to me. This is the fourth time since Christmas (yes, Christmas day I got bad insulin - talk about unfair! How long does it take to deduce bad insulin on a day you expect to run high??). There is nothing obviously wrong with my fridge, and when I pick up my last refill at the phamacy, I’m going to skip the fridge entirely and see if if goes bad in two weeks at room temperature. The next script is going to get filled at a different pharmacy, just to see if it’s their handling, not mine [editor’s note, see litany of blame, #130 - Is it me (did I do something to make the insulin go bad)? ].

I started collecting all the various bits of site-change garbage off my dresser, remembering to “flip off” the little blue cap like it asks you too (they probably don’t mean given it the bird, but then they should be more specific). Then I see the old, dead bottle and pick it up. I even check it to see if there’s any outward sign - good til April 2011, clear, no floating crap. Just dead. Sigh. I head for the trash, and and am suddenly hit by an overwhelming urge the throw something.

Well, what better thing to throw than a defective bottle of what is supposed to be life-sustaining medication? I toss it, startling the cats but not really doing much else (the phrase “throw like a girl” did come to mind). So I retrieve it from the floor, scope out a nice blank section of bedroom wall, and really put my heart into it. The top and bottom broke off, although the plastic label kept the rest of it intact.

I feel somewhat better, retreating to a corner with a book to wait for my sugar to go down. I even went down to watch Number Two Son cut the cake and open his presents, pretending to be in a good mood until I could slink back upstairs.

I finally got to eat about three hours later. Rice AND curry AND birthday cake AND ice cream. Morning BG? 74.

Fuck you, diabetes!

The Gusher

2010-01-26T16:59:00.001-05:00

Site change day. Given my more or less complete zombie state in the mornings, I was quite proud of myself for remembering. I shut off the alarm clock, took my synthroid, checked my BG (114) and fumbled around until I got a grip on the tape on my stomach for my infusion set and pulled it loose. I left the pump in the bed, grabbed Dex, and headed for the bathroom, my eyes barely open enough to keep me from stepping on the cats. They twined around my legs, meowing in eerie harmonies. We feed Sarah in our bathroom, and Tucker in our bedroom to keep the food away from the dog, so they associate alarm clocks with breakfast. And they want it NOW.

It was only after I'd chased the cats out and turned on the light that I happened to look down. Blood was running down my bare legs, and my bedtime tee shirt looked like something from a slasher flick. There was a huge pattern of blood drops all over the front of my shirt, like I'd been standing right next to Freddy Kreuger's latest victim. Ugh. A dozen large drops on the bathroom floor (and presumably the cats as well, as they are yowling unhappily outside the door).

Good morning, diabetesland! I ball up the tee shirt and press it against my belly, then feed the cats to shut them up before tossing the shirt into the sink next to Dex and hopping into the shower. Only to be interrupted a few minutes later by my husband, pounding on the door to ask if I'm all right. Apparently Freddy Kreuger got the bed too.

Bleeding stopped. New site in. Bathroom floor wiped down. Pajamas, sheets, and bathmat in the wash. Cats at least are self-washing. Just another day with diabetes.

Only I don't like the way the cats are looking at me. Maybe tonight I'll put a baseball bat under my pillow next to Dex. Just in case.

Turning D-blog day into D-log day

2009-11-09T20:20:00.002-05:00

I did it. After several months, tonight I finally started the beta test of my logging software. This is the idea I pitched last spring for the DiabetesMine design contest, which I've been using to log my own readings since March. In June I bought a MacBook and now take that along to my endo's and look at the output together.

It's been working pretty well for me, and my inherent laziness had kicked in, and I had really stalled on doing anything else with it. Until I was contacted by someone who found the ChaosTracker website, and asked if I still needed beta testers. And after weeks of email tag, I had something almost ready to send out - and as I was writing up the directions, two more people found me and asked to help. Which is probably all I can handle at this point, until I clear up the know bugs and start looking at enhancements.

So now I have my beta test starting, with the goal of putting in a real effort between Christmas and New Year's this year and actually getting this out the door shortly afterwards. Wish me luck - and happy D-(b)log day!

Can somebody make this movie?

2009-10-10T10:51:00.003-04:00

Back in college, I had a friend who was a pretty good juggler. Sometimes, he would start off with just 2 or 3 objects, and we'd toss more and more in, until eventually he'd have maybe 7 or 8 items going, and then they'd all fall down, except for a few he'd manage to catch before they hit the floor.

If anyone out there has the coordination (it sure ain't me), could you do a "life with D" juggling video? Start with a meter and pump, then add in an apple or something ("eat healthy"), then a sneaker ("exercise"), then a juice box ("you're low"), bottle of ketone strips, wallet, alarm clock, CGMS, whatever. I think it would be a great visual on the juggling we have to do every day, along with a reminder that no one can get it perfect all the time...

If you build it... (nothing to do with D)

2009-10-01T07:53:00.006-04:00

This is where I send myself when I'm in desperate need of a "Mommy time-out".

The Castle Room, with elliptical decorated for effect:

Close up of the doors to The Crawlspace of Unfinished Projects (like half-finished afghans, needlepoint, curtains, and shirts. That visible "table" leg is from my great-grandmother's 1931 electric Singer sewing machine, which I still use)

... THEY WILL COME:

That's Tucker (big gray one) and Sarah (little brown one), in their favorite spot in the house.

Comments from the castle

2009-09-16T18:48:00.002-04:00

I'm trying a vlog today from my "castle room", the room over the garage the kids and I turned into the perfect reading nook...

Come again?

2009-08-25T17:19:00.002-04:00

What the weather forecaster says:

"Increasing clouds tonight with scattered thunderstorms, some severe. Lows around 70."

What a PWD hears:

"Increasing clouds tonight with scattered thunderstorms. Some severe lows around 70." Severe lows? What do they mean, seventy's not bad at all... WTF?

... oh

The Magic Brownie

2009-08-19T20:27:00.002-04:00

Okay, okay, it's not that kind of magic brownie. I was always too much of a goody-two-shoes to ever try anything stronger than alcohol. But this particular magic brownie was I think even better than what first leapt into your mind.

Let me preface this by saying my BG is always wacky. Diabetes seldom lets me get away with anything. I actually need to bolus about 1.2 units (from a TDD of under 30) for a cup of decaf coffee with a tablespoon of milk in it. I can be 100, eat 10g of carbs, not forget to bolus, and still be 340 an hour later. It's more or less completely random. That is why I have been wearing a CGMS since the minimed FDA approval study - I cannot reliably predict what can happen, I can only react to what is happening now. (Yes, I do know how to count carbs, use a scale, exercise, etc, etc. It doesn't get me to predictable, it only keeps me conscious). Although, as my immune system has taken out a few more hormone-producing organs after killing off my islets, things are slowly getting easier.

Anyway, back to the actual story, last night's dinner was stir-fried organic farm veggies with some leftover pork chops, brown rice, and biriyani spices thrown in. And a glass of milk. Tasty, but hard to predict. So I bolused conservatively, because I was about to get in the car to go to my writers group and down that aforementioned cup of decaf coffee. I figured I would recheck then and add in any extra along with my coffee bolus.

At the bookshop cafe, there was a line. There usually isn't. I had to stand for ten minutes, staring at their yummy display case. They all looked good, but the brownie, well, it was like one of those early dracula movies - me standing there, all innocent and confused, and the brownie on the other side of the glass, beckoning, beckoning...

I tore my concentration away and looked at Dex, to remind myself why I needed to virtuously avert my eyes from the evil confection. 110. With two arrows straight down. Obviously a sign from above. Or below.

I carried brownie and coffee back to my table, doublechecked with the meter. 94. Okay, let's eat. I will keep an eye on Dex, and as soon as I start rising I will bolus, because this brownie has gotta be at least 50g all on its lonesome, so even if the fat takes a while to hit, it's not going to be pretty.

Writer's group over: 112. Run into Staples and Target for kids school supplies: 81. Drink 15g juice box. Drive home. 110. Get ready for bed: 108. These are fingersticks, btw, as Dex looks too good to be true.

Okay, I'm too tired to stay up for the carb blast, either Dex will wake me or I'll treat him like a snooze and fix it in the morning.

Wake at 6:30. 71.

Like I said, a magic brownie.

We all deserve one now and again.

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.

My early Christmas present

2005-12-28T10:14:00.000-05:00

OK, sorry it's taken a bit for me to update this, but Christmas time is somewhat crazy here. But crazy in a good way. I had my parents and four of my five siblings with their families over for dinner. This year, that was 26 people -- a small crowd, last Christmas was 34. I think we scared off my husband's tiny family this year. And no, I don't do it all myself - we all bring something (Mom made the turkey/stuffing/gravy) so my job was to clean the house, buy beverages and make mashed potatoes. Everything went really smoothly and I had a great time. It was great to see my 3 boys and 6 boy cousins all piled on the couch playing/watching Lego Star Wars on the Xbox. And the best of all was that, even with gingerbread men for breakfast, wine, brandy alexanders, potatoes, stuffing, cookies, two kinds of cheesecake, trifle, etc, etc, etc that I ate, my BG stayed between 80 and 140 80% of day, and peaked at 216 for just a short time! Of course, Monday I was back to being mostly healthy and that's when I spent like half the day out of range. Oh, well.

I know some of you have been looking for an update on the integrated continous monitor & pump setup. I can't really provide identifying info without pissing off the study people (whom I really want to stay on the good side of - I don't want to have to give this gadget up), and I don't think I'm up to the detail and elegance provided by Wil in LifeAfterDx, so I'll just highlight a few things different from Wil's experiences and include my own observations.

Basically, it works a lot like the Guardian described by Wil, with the exception that you don't need to carry a separate receiver with you. You put the sensor under the skin and tape the transmitter nearby, then the pump picks up the readings. It has 2 status pages, one a graph of the last 3 hours, one the last 24 hours. Both graphs let you scroll the cursor back to see the numbers, and have little tick marks to indicate when you've bolused. I've had the sensor remain in contact while I'm in the shower and the pump is left next to the sink, but I've also had it lose contact twice when I'm in bed with the pump on one side and the sensor on the other (it beeps and I set the pump right against the transmitter for a few minutes and then it's happy again).

Based on what I've seen from the CGMS I wore last year, the week I wore one recently and random testing when the kids/dog wake me up at night, I sleep through a low (50 or below) an average of twice a week. I think this is a big contributor to my lack of "patterns" - my body remains in a permanent state of panic, making it tough to get any set of basals that really seem to work. Two days after I got this pump, it woke me at 2am to warn I was dropping low and I tested and was 56. (the sensor thought I was 78 but I guess it's the thought that counts). It does take a while to get synched up with the fingersticks -- as synched as it's going to get. I've had one day where they stayed within 10 points and another where I got readings 35-90 points off. I also had a sensor go bad on me -- while I was on the phone to my CDE. I just told her what the alarm said and she said I'd have to put in a new sensor. Since I was at work I waited until suppertime to set up the new one, now I'd rather have my next change be a morning thing but of course I'm leery of going a night without it, since that is when it really pays off.

I guess what I'm saying is its still not perfect, but it's a heck of a lot better than whatever else is out there at the moment. I tend not to feel a low until I'm below 60, so it's real handy to just look at the pump and see whether I'm headed upward or downward, even if I still need the fingerstick to confirm what's going on. I made a lot of use of this on Christmas, double-checking to see if my guesstimates were anything close to what I needed. This was perhaps the most useful thing about it, one click on the pump and I can see that I had been climbing, but have now leveled off and started to drop. I see Wil has started to make use of this as well, in his Light Bulb Moment post. Proactive BG treatment - the wave of the future!

Name that stress

2005-12-19T13:24:00.000-05:00

The other day my five year old said to me, "Mommy, I don't remember what you looked like before you got your pump." I ignored his older brother ("the same as she does now, only without a pump, stupid!") and said "Sometimes I don't either". Because he had just turned four when I started taking insulin; was four and a half when I got the pump. So he really doesn't remember a time when Mommy wasn't all stressed out with this disease; when I wasn't sticking my fingers ten times a day, when every third morning I wasn't busy with a site change and snapping "ask Daddy to get you breakfast". I can't say he doesn't remember a Mommy who wasn't cranky if she missed a meal, because that has pretty much always been true ; )
On the other hand, life wasn't exactly stress-free before. When my oldest son was five, I was working a ton of extra hours at work with a toddler and a baby on the way; when the middle guy was five, I was agonizing over a job change, building a new house with an old one that wouldn't sell, and so on. So I recognize that even if this is a huge new deal to me, to the kids it's just another in a long line of grownup issues. And I just have to deal with it, because that's the only real option.
His comment did bother me, but I need to look at the fact that most of the time this disease is really nothing more to me then a big pain in the butt (literally!). And sometimes, it's a source of humor. I mean, I'm getting ready for my end-of-study-control-period by wearing a CGMS again for a solid week. It would, of course, have to be the week of my company Xmas party, where my BG was way up there pretty much all day as I pigged out. Lord knows what the graph for that is going to look like ("When good diabetics go bad"). And I had a pretty amusing time trying to come up with a way to hide both a pump and a monitor beneath a slinky evening dress without looking like some kind of holiday suicide bomber. Note to self: clipping both devices to a single garter wasn't the best idea - the combined weight kept trying to pull down the garter, which was clipped to my underwear, which wasn't clipped to anything... Luckily a few timely trips to the ladies' room averted any real catastrophe.
And then there was yesterday's conversation with my husband:
me - You got a box from Amazon.
him - Don't open it; that's your Christmas present. It's something you really want.
me - I don't think they sell pancreases on amazon. Though I imagine you could try on eBay.
him - That box would be in the fridge.

Actually, my real present comes tomorrow, when I start my non-control group six months of integrated-pump-and-continuous-monitor study. Stay tuned for details...

Oh, the technology!

2005-11-21T20:58:00.000-05:00

OK, I’ll try and keep this rant a bit shorter, in the hopes of actually being able to post more often. I’ve actually been doing pretty good, BG-wise, for the past few weeks. Except for waking up at about 60 in the morning, which I’m afraid to play with since everything else has been going so well.

Which leads into my rant, which is about the level of technology available for use by people with diabetes. Don’t get me wrong. I love having a pump, and I’m really glad I didn’t get this disease until after the availability of home BG testers (not to mention really REALLY glad that it was after the discovery of insulin, unlike one of my great-grandfathers, who died in the early nineteen-twenties a few months after being diagnosed - wonder which type he was). But, the technology just isn’t quite "there" yet.

For example, why isn’t there some way of telling if your bottle of insulin has gone bad, other than injecting it and waiting to see what happens?

I tend to be both incredibly sensitive to insulin and to carbohydrates. This is wearing off a bit as my honeymoon ends, but last February I had a correction factor of 1 unit for 80 points and BG readings that were just all over the place. So my doctor suggested I wear the 72-hour continuous glucose monitor to see if we can get a picture of what the heck was going on. Wow, that will really be useful, I thought. Until I found out that I don’t get to see the numbers. And that the piece of equipment you had to wear looked like a Radio Shack remote control from the 1970s. And that the thick rubber cable didn’t detach when you took a shower, so you had to wear it in a baggie around your neck in the shower. I suddenly knew how a cat feels when it has to wear one of those plastic Elizabethan collars. If I had cat ears, they’d be flat back against my skull. Mad, and humiliated. And wet.

My CDE explained to me how to enter in all my carbs, exercise, and readings (and I’m not even going to go into to user interface design here). She also mentioned that it won’t pick up readings below 45 or so.

"But will it beep or something if it gets that low, to warn you?" Well, no. That would be the next generation. Lovely.

Anyway, I wore the thing and dutifully entered everything I could think of. I even ate the same breakfast and lunch every day, and have virtually the same dinner, too, to eliminate as many of the extra variables as I could (two or three out of dozens, doesn’t really help, but made me feel more in control ; )

My fingersticks were my typical 60-220 or so. I had one reasonable day and a couple of bouncy days. Then I turn in the monitor and get a copy of my readouts in the mail.

Whoa! Turns out one night, where I’d gone to bed at about 160 and woke at 70, I had really nose-dived immediately after falling asleep, hit "too low to read" by 1 am, and despite my body trying three times to push my BG back over 70, it didn’t happen until I woke up and had breakfast. I was psyched about the 70, but then ate the same breakfast as the day before and this time went over 220 with it. I had two lows around 50 late that afternoon too.

So what would happen, I keep asking myself, if my liver didn’t kick in at 2am and try to dump in some sugar? For that matter, what did happen, between 1 and 2 that night? I don’t know, I was asleep. And just how often does it do that, anyway?

For months I tried setting alarms at random points during the night, only to discover the diabetic’s equivalent of the Heisenberg uncertainty principle: you can see what your BG is, or you can sleep, but waking up enough to measure it basically stops what you’re trying to measure in the first place, and shifted my predictable late-afternoon low to random times throughout the day.

Here’s a shot of the CGMS readings, each day a different color. Keep in mind this was with food and exercise levels as close to identical as I could make them.

So after months of pestering my CDE that there has got to be something better out there, I find out about the study. It’s for an integrated pump and continuous monitor. You wear a sensor that’s inserted like an infusion set, (and then taped in place) and it broadcasts readings to the pump, giving you a continual readout. Great! There’s a six month study period, followed by a six month extension, where both the sensor and control groups get to use the sensor. I am so psyched about this, this may be my only way of tracking down my incredible bouncing BG to some sort of reasonable a1c value.

So I go for the preliminary screenings, wear the klunky old CGMS around for a week (can’t see those readings until the end of the year), and finally get enrolled – in the control group. Man, that was disappointing. So for the past five months, I’ve been using a pump and monitor for the study that I like less than my Animas 1200 and UltraSmart, and uploading my values a few times a week, plus talking to the dr’s once a week or so and tweaking my basal settings. It took four months of guesswork for my readings to get to something approaching the level of control I’d be happy with, and of course I’m amazed it’s stayed okay for even these last few weeks. It’s so frustrating to know with a sensor I could probably straighten things out within a week or so.

But, I’m trying to look on the bright side. Right now, what I’m thinking is that I have documented evidence of six months of intensive work between me, my doctor, and my CDE, resulting in an average a1c over this time of: 8.0. Really, eight point frigging oh! How on earth can I put this much time into something and not see some better results! Oh, yeah, bright side, bright side.... Well, what I’m thinking is, when I also have six months of documentation on what my BG is with the sensor, I’ll have a very good argument for my insurance company that I need this device! And that paying for the sensor might be cheaper than paying for me to have a weekly appt with the doctor, not to mention the complications that I’m trying like mad to avoid...

So anyway, that’s where I’m at now. So much for the shorter post - it’s just that when I’m pissed ("motivated") enough to write, I tend to just dump it all out. Stay tuned for a report on the sensor, which I get to use just in time for Christmas ("Hey, watch me eat this brownie!")

Have a happy turkey day, all!

Val

PS - yes, it’s OK for any members of the "OC" out there to link to my site - drop me an email if you do. And I do plan on fixing the ugly colors on here at some point....

My Diagnosis

2005-11-06T19:07:00.000-05:00

I’ve read many stories talking about how people were first diagnosed with type 1 diabetes after an illness - in fact, I’ve read claims that there "must" be a viral infection to set it off. Which isn’t me. I honestly don’t think I had so much as a cold for at least six months before diagnosis, and I hadn’t taken a sick day for me (as opposed to the kids) in two years. To be truthful, everything at home had been going so smoothly, I was getting a bit superstitious about it. We were past due to get hit with something. Big. And we were. How I was diagnosed with this serious, all-consuming, pain-in-the-ass disease was: I went for a physical.

Looking back, there had been a few symptoms: my eyesight had seemed a bit blurry for a while. But I was almost 37, had been working on computers 10-12 hours a day for 20 years. I figured maybe I finally needed glasses. And I was going to the bathroom more often, even if it seemed like just a tiny amount was coming out. I would go just before I left work, and by the time I’d picked up the kids and gotten home an hour later, I would have to charge into the bathroom again. I figured it was a urinary tract infection, but I had a dr’s appt less than a week away, so I wasn’t worried.

I was drinking a bit more than usual too, but nothing drastic. Certainly not anything out of line with what everyone else was doing with the dry office building heat. The one time I was really thirsty, two days before my physical, was when I’d been at saber fencing lessons with my then-eight-year old. We’d had a real workout in too-warm sweatpants, were dripping with sweat in December, and on the way home we got an ice cream cone as a reward. I got home and drank three glasses of water - very unusual for me - but the next day I was fine.

So I wasn’t really expecting it when instead of the nurse coming in for the usual stuff at the start of the checkup, my doctor comes in instead. He says my fasting urine sample had sugar in it, and they wanted to double-check with a finger-stick and then maybe draw some blood. The finger-stick showed 232. My doctor (I’ll call him Dr A for this piece) asked if anyone in my family had diabetes. Well, my grandmother had it since her sixties. And my dad was diagnosed about a year ago, in his early seventies. Both had done fine with just diet control, which I had vaguely assumed meant cutting down on sweets.

Dr A seemed very surprised that someone my age and build (5 foot 6, 128 lbs) would get diabetes. He wrote out a prescription for a meter and told me over the next two weeks to check once a day: sometimes when I woke up, sometimes two hours after a meal. He said to cut down on my carb intake - rice, pasta, potatoes, sugar, bread, etc. "You mean like Atkins?" I asked. Atkins was pretty much at its peak then. "Yes, like that. Eat less, exercise more, and call me if it goes over 350."

The only thing I had presence of mind enough to ask was "this can only mean diabetes, right? It can’t be anything worse?" Boy, was I naive.

I got a bunch of type 2 diabetes pamphlets in a bag. Welcome to the club.

I went home, somehow managing not to blurt out my bad news or start crying until after the kids were in bed. I did another finger-stick. 283.

My husband probably saved my life by going off to amazon and rush-ordering me a book. The First Year: Type 2 Diabetes. I read it through twice in one day. Dr A called to tell me the lab test came back with an a1c of 9.2. Definitely diabetes. "But what about type 1?" I asked. The book talked about how many thin type 2's were actually type 1. Well, that wasn’t too likely, Dr A said, given that I had a family history of type 2 (???) And anyway, it wouldn’t be treated any differently as long as things were working.

So I went thru Christmas and new years on an ultra-low carb diet. It seemed to work, at first. I had fasting readings in the 80s in January. Then Feb came, and kicked off a month of pure hell.
To start off with, I got a sinus infection, and my bg readings were back in the 290s. I was also running a temperature of around 101 all the time. I went in, got antibiotics, and the sinus infection went away. The temperature didn’t. I could not get a temperature reading below 100 degrees for 22 days. I bought 2 different thermometers, made my husband take both our temps in case there was something wrong with my technique. Dr A checked for a urinary tract infection - nothing. He did blood work, looking for other weird viruses. All negative. My BG readings remained high. He told me to eat less and exercise more. At this point I was down to 24 g of carbohydrate a day and 90 minutes on an elliptical after supper every night. It didn’t help.

The blood tests started getting more esoteric, and more scary. We even did a C-T scan, looking for tumors. I kept asking "Could this be connected to the diabetes?" and kept being told no. I complained that I ate virtually no carbs and my blood sugar still went up 100 points when I ate. Dr A said I was testing too often. Once a day was plenty for type 2. I responded I wouldn’t test more often if every time I tested I saw values between say 100 and 130, but I was seeing things like 187 - 316 - 248 - 325 - 192....

I stopped going back to the doctor’s about the temperature, figuring he was out of ideas anyway. In March I went back to Dr A and asked him to run tests for anti-GAD, anti-insulin, and anti-ICA. He’d never heard of them, but agreed to have them done.

I got a phone call from a nurse about the results. Dr A was not available, but in the background I heard his partner complaining "Who ordered these tests? We never order these tests. I don’t even know what they’re for." The lab had never ran the anti insulin one. The anti-GAD lab normal range was from 0.0 to 0.1 and I had 128.2. Anti-ICA was usually negative and I had 38. "Um, what do these test mean?" The nurse asked. "They mean I want a referral to an endocrinologist and I no longer wish to be seen by this practice." I did phone Dr A later and politely informed him that it was indeed type one diabetes, and should he ever see another patient with similar symptoms, please keep that in mind and not put them through four months of guesswork.

Enter Dr B. I was probably the first patient he ever had who was relieved to be told they needed insulin. At this point I weighed 111 lbs and since I am 5'6, looked like a poster child for eating
disorders. Or in my case, not-eating disorders. We phased in insulin using MDI and gradually phased in the food as well. But what really pissed me off about the whole runaround was that two seconds after Dr B first walked into the room, he touched my forehead and said, "You seem to be running a temperature. That is very common in autoimmune disorders." So much for all the expensive testing over the whole month of February.

Just once, how about a normal day???

2005-09-27T13:25:00.000-04:00

OK, so I’m a bit compulsive. I have been testing 8-10 times a day since diagnosis, I call my CDE an average of once a week, and I can and do make various adjustments based on what’s going on that particular day. I’m not stupid. I feel like, just once, I deserve a break and get BG numbers where they’re supposed to be. It never happens.

Take last night for example. We were pretty much out of food (yes, I’m another of those thirty-something women with kids, with both of us working and 3 kids with activities; dinnertime tends to be pretty hectic). Not having the energy to thaw anything, I reluctantly take out the pasta. I say reluctantly because in 2 years of diabetes I still cannot come up with a formula that works for pasta (being married to an Italian, this is a big issue). The closest I can come is to do a split dose, half now and half spread over 30 minutes, followed when the 30 minutes are up by something quick-acting and another bolus. Oh, and don’t eat very much - 1 cup tops. So we get out the meatballs, sauce, pasta, milk and canned green beans. The kids are thrilled because we never have pasta anymore. I figure out my split dose on 57g carbs and dig in.

It’s apple season, and we’d just gone apple picking with the kids. I have pretty much given up on fresh fruit altogether after twice trying almost double the insulin for an apple that I have weighed beforehand (and not even eaten all I’d planned on) and going up over 330 both times (yes, the second time I had taken way more insulin. No dice). So much for eating healthier after diagnosis – my eating habits were great before, now they’re less so. I mean, an apple will send me to 350 or 42 depending on I-don’t-know-what, sunspot activity or something, nothing I seem to be able to keep track of. An Oreo is always 0.6 units of insulin at lunch. Which would you rather deal with at work?

I’m digressing (expect that a lot). Besides apples, we also picked up a home-baked apple pie from the farm. First of the season. So, for my after-pasta part 2, I cut a slice of pie, weigh it, consult two different books and pick a magic number. Two hours later, 143. Hey, not bad!

Since this was a pasta meal, I know I’ve got to check at bedtime, because it’s going to be way up there. Sure enough, 230 two hours later. So I take a small correction (1 unit, should leave me at 180) and head to bed.

I sleep thru the two-hour check beeping. This is a problem because I know from past experience if I sleep thru it, I probably went low and I’m going to be bouncing all over the place from now on. I wake at 4:30am and test. 267. OK, get the pump to recommend a correction. 4.7??? that can’t be right. I try to wake up enough to figure out what number I should be using. How about 3.0? Should bring me to right about 100.

At 6am I’m 48. Shit. OK, grab the juice box from next to the bed, slurp it down and lay back on the pillow. Wait fifteen minutes or so, then drag myself out of bed, try and help get the kids out the door. I test again and I’m 85. I can’t function, find myself just staring stupidly while my husband runs around, signing homework, making lunches, making sure the kids are dressed and brushed. I manage to pour milk, make some whole wheat toast, take half my usual amount of insulin, turn the kindergartener’s shirt right side out, and watch the puppy poop on the rug. Shouldn’t be acting like this; I’m not low. Looks like full shutdown mode. Shutdown mode is what I call it when my BG has bounced up and down too much, too quickly. It’s similar to the aftereffects of a migraine; when it happens pretty much all I can do is crawl into bed and sleep for 4 hours.

I call in sick to work and go lay on the couch. I stay downstairs until my 2-hour post-breakfast reminder - hm, only 65. OK, drink a cup of milk and go back to bed.

Wake up 3 hours later and feel human again. Test - 235, yeah, well, it’s all going to be shit today, I’m not surprised. Look for lunch - my husband has somehow managed to make me a sandwich during the morning havoc. I settle down to whole wheat sandwich, glass of milk, half a green pepper and an oreo (yes, I’ve tried without the Oreo, cut out all "bad" carbs for months. Didn’t make one bit of difference in my control and I felt like I was in prison. "Bad" carbs are back, as long as the rest of the day is reasonable).

So yet again things are seesawing, and yet I keep plugging away, hoping that tomorrow I'll finally get it right..