The eleventh clue

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

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

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

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

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

This is Every Day

The Insulin Nazi

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

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

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!

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

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

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

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?

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)

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.