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.