In which I run over my pancreas

So I have been a Dexcom user since they were FDA approved, paying out of pocket for several years before insurance started kicking in for it.  And I was part of the FDA approval study for the MiniMed CGM before that.  So, basically, I have been using a CGM 24x7x365 since 2005.  And in all that time I have only voluntarily gone without it a handful of times.  I know “brittle” is a loaded word, but let’s just say I do what I’m supposed to do, my body doesn’t.  It’s fond of 200 pt drops in the middle of the night on the same basal that keeps me perfectly level 70% of the time...  So, long story short, I try never to be without my Dexcom.  Ever.

Anyway, after having the potato shaped receivers since 2006, I was thrilled to get my G4 last weekend.  Adding that to my new T-slim, I was rocking both an “iPanc” and an “iPanc Touch”, and had been showing them off to family and friends.

Which is why I was startled to reach down for the new Dex to show it to my sister-in-law, and it. wasn’t.  there.  In a panic, I start slapping pockets, dumping out my pocketbook, etc, and finally look outside, where I see it in the driveway.  I dash out, rescue it, and notice that unlike my previous Dexcom cases, this belt clip seems pretty loose - loose enough to get knocked off by a retracting seat belt and drop out as I leave the car.

I try to squeeze the clip tighter manually, which helps a little but not much, and make a mental note to tighten it with pliers as soon as I get the chance.

How many of you have spare time to go digging out the toolbox in the week before Christmas?  Yeah, I thought so.

Which is how I wound up driving yesterday to Colllege Town, 2.5 hours away, to pick up Number One Son and a high school friend.  (Yes, Number One is now in college.  He was eight when I was diagnosed.  I am now both old and a veteran PWD)  I had lunch with a former co-worker, helped Number One Son and Number One Friend (who has the same first name as Number One in real life too) to stuff bags of dirty clothes and guitars into my car, help Number One Friend unload at his place and finally get back home, seven hours after I left.

At which point I go to peek at Dex, and he is gone.  Oh, crap!  For a panicked instant, I picture him lying on the concrete outside some dorm, hours away.  But no, I had been checking him frequently on the drive home.  He must be in the garage.  Or the car.

Nope.

With sinking heart, we call Number One Friend, and have him check his driveway, for a black box in a black case on the black blacktop in the dark.  He’s got it, so I drive back over there, and pretty much grab Dex from his hands.  Case looks fine, Dex looks fine, glass looks fine... until I push a button, and am greeted by that spiderweb-mosaic pattern all-too-familiar to parents of teens with cellphones.  Must have backed over it while pulling out the driveway.

Crap!  Crap!  Crap!  Crap!

I drive home, phone Dexcom tech support, and leave my information for a callback.

Then I start explaining to V2 what happened.

And Dex beeps.  He beeps!  Poor little shattered screen Dex is still looking out for me.  I pull out my meter and test -- 74.  He’s set for 80.  Thank you, Dex.  Nos, (spero que non) morituri, te salutamus.   (OK, its been 25 years since I took Latin, and I stuffed a bit of Italian in there too, probably.  What I was going for was “We, (hopefully not) about to die, salute you.”).

When the Dexcom Tech Support rep calls back, I explain about the loose clip and the dark and the driveway, and he agrees to send me both a new receiver and a new case at no charge.  (Of course, the current case’s belt clip is now nice and snug, as being run over by a Toyota is even better than pliers for tightening it up).

All I can think of, is thank goodness I didn’t just completely lose it somewhere, and thank the guys at Dexcom for sending me a replacement.  Luckily, I had two old Dex7 sensors left, so I put one in last night (and got woken with a 54 at 4am) and new Dex the Second should be here tomorrow.

Dexcom Support is awesome!

And don’t forget to check your clips, everybody! 

Poetry Parody: If A. E. Houseman had diabetes

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

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

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

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.

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

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!