Rebels like me

The windowless basement room is filled with smoke. My pipe is clenched in my teeth. A bead of sweat trickles down my temple. I can barley make out Fidel through the blue-gray haze. He sits across the green felt table from me, hat pulled down over his eyes, a pile of red and white chips in front of him. He’s chewing on the butt of his cigar.

“Come on, deal the cards already,” snaps Lech curtly, stubbing out a cigarette. Dr. Joslin cuts the deck and rapidly flips cards out to the players; except for Che, who’s already passed out from to much tequila. Mohandas yawns briefly and picks up his first card. Thomas scratches his ear. I get the feeling he’d rather be writing than playing poker with the rest of us Revolutionaries.

Dr. J finishes the deal. I pick my cards up and unfold them in front of me, holding the hand close to my chest.

Ace of spades, ace of clubs, two black eights, and the queen of diamonds. Hmmmm….. something familiar and ominous about this hand…..

I’m sure that back when I was a Cub Scout my Mother never expected me to be a revolutionary. Neither did I. But desperate times call for desperate measures, and for us D-folk the desperate times are about to get a whole lot more desperate. There are dark clouds on the horizon. A storm is coming, and it could well sweep us all away.

High in corporate towers the lawyers for the insurance companies and the Doctors who have sold their souls to the devil for dollars are cooking up a new black magic. Behold the lowly test strip: now you see it. Now you don’t.

Like most shocks I receive, this one started innocently enough… My problem was pretty simple: I get free test strips for poor diabetics from the state; but I have too many diabetics. My allotment of free strips for the needy is based on the clinic having 50 diabetes patients. The problem is I have 200. Oh, right, I forgot, I got 50 boxes of strips per quarter before the budget got cut. Now I get 36 boxes of Abbott Precision X-tra strips per quarter-year for a thousand square mile area. Lovely.

I can’t even split the boxes up. P-Xtra meters use a calibrator strip. Each box has only one calibrator. I tried giving out half-boxes and making patients sign an affidavit in blood stating that they would return the calibrator once their meter was ready. No luck.

About two weeks ago we ran out of strips. To be honest, I was so out to lunch I didn’t even know we were low until the mob showed up at my office with pitchforks and flaming torches. I knew I had to do something quickly.

I called everyone I know. Solutions were few and far between. Conversations went something like this:

Me: Hey, its Wil over at Valley. How ya doin?

Colleague at neighboring health center: Overworked, underpaid. You?

Me: You know me, I love my job... but we’re having a test strip problem over here.

Colleague: Welcome to the club.

Me: Yeah, we’re out. Totally. Ideas?

Colleague: How big is your budget?

Me: Ummmmmmm….I think I’m allowed to buy two pens and one Band-Aid this year.

Colleague: You’re screwed.

After about a dozen of these conversations, I had a good cry, a stiff drink, and then I thought to call my Primary Care Physician. She actually had a possible solution for me. She’d found a source for “affordable” test strips.

I called the outfit and told them the sad tale of my rag-tag band of diabetics living in tents in the freezing weather of the current economy. And they made me a pretty good deal. As we are a non-profit we could have test strips for $9.50 per box of 50; plus shipping of course. That put them right at twenty cents a strip, which is actually moderately affordable, an 80% discount off of name-brand strips, and roughly equivalent to the amount most insured diabetics shell out in co-pays.

The catch?

I had to buy 100 boxes at a time. They would give me 16 meters free for every 100 boxes I bought. Problem was I knew we’d need a lot more meters right out of the gate to start switching people over. I told them I needed 50 meters and reminded them about the starving children of diabetics who were pan-handling on the street at that very moment. (I actually got hired here after sitting in front of the clinic for three months with a “Will work for test strips” sign around my neck.)

We’ll get back to you, was their answer.

Tick-tock…

Tick-tock…

Tick-tock…

Tick-tock…

Boop! (sound of email arriving) Hot Russian women are waiting for you! How does this shit get though the clinic’s spam filters?

Tick-tock…

Tick-tock…

Tick-tock…

Tick-tock…

Boop! An answer! Five bucks a meter. I’m good to go. I just need to come up with a little over a thousand bucks to make this deal happen. Hey, J, what’s the current street price of Lortabs? What? No. No, of course I’m not serious. Damn this moral compass!

So I go to my boss to convince her to find over a grand from some other department’s budget. My argument: it isn’t really a loan as much as an endowment. If we sell the strips at cost, every box we sell gives us the money to buy a replacement box. It is more like a one-time capital expense than an inventory.

“Wait a minute,” interjected the clinic’s executive director mid-pitch, “you’re telling me these little plastic strips cost a dollar? That’s criminal! How much could they possibly cost to make? A penny? Half a penny?”

Her blood pressure up, her moral outrage up, and her sense of basic patient rights insulted; she proceeded to start rattling off a list of people I should call, email, and write to. Yeah, right, I thought to myself, I’ll get right on that in all my spare time. My eyes must have glazed over because she stopped in mid-sentence and studied me carefully. “Oh never mind, I’ll do it myself! Just get me the facts and double-check the letter when I’m done.”

OK, if you want to spit into a gale….

And the test strips? Our medical director was called in and the decision was made to add the ten-buck strips to our pharmacy’s formulary. Now, just like Z-pack, lyvoxil, and metformin; test strips are now always stocked. Always available. Always 10 bucks. That helped my people. But not everyone else.

My boss wrote the letter. Then I emailed it to every one under the sun. Various colleagues and assorted power-brokers emailed back: “Yeah. Sucks. What’ya gonna do?”

Then our regional ADA advocacy director emailed. The problem was MUCH larger than I had even known. She told me that her office has been flooded with complaints that insurance companies are re-classifying test strips as Durable Medical Equipment. What the fuck is durable about a test strip, for crying out loud! Why would they do that? Well, DME coverage is usually at 50% on most policies. Now, instead of a med co-pay, diabetic patients are all of the sudden asked to pony up half the cost of the strips at retail.

Oh yeah. And on top of that, you have to reach your deductible before they will pay their half. Oh yeah. And on top of that, some polices have a separate DME deductible above and beyond the policy’s basic deductible. This is the black-magic I was talking about at the beginning of the post.

Boy was I pissed. I didn’t know what I was going to do, but I had to do something. My little band of our tribe is OK: for now. But this was a basic assault on the health and well-being of my entire kind.

Not knowing what else to do, I started by emailing Amy at DiabetesMine.

I didn’t hear from her for a day or two. Rio is on spring break (so no school runs). I took the week off, locked myself in the library, turned off the DSL modem—no point in tempting one’s self—and starting hammering out the first draft of one of the D books I’ve been promising everyone I’d write for months, and months, and months.

Yesterday evening I booted up and I had mail. Boy did I have mail. Amy posted about me. There’s the picture of one-quarter of my face that was the first photo Rio took under the headline “Local Heroes.” Holy crap!

I guess I’d better go to eBay and buy myself a cape. And maybe a heroic pipe.

All the emails boiled down to the same message: Read about you on Amy’s blog. I think it is awesome what you are doing. How can I help? Well, all except that email from my buddy Kerri over at SixUntilMe; who jokingly called me a Diabetes whack-a-mole for my propensity to pop up for a while, disappear for a while, and then show up again. Guilty as charged with extenuating circumstances. I am a DWAM; but just ‘cause you don’t see me on the internet doesn’t mean I’m not doing something for us D-folk somewhere else!

So last night I went to bed thinking: all these people want to help. This could be the start of a movement. What to do with all this energy? How can we make a statement that will make the rest of the world understand how critical this is?

As I tossed and turned, unable to sleep, part of an idea came to me. A vision formed in my head. A dollar bill with a test strip taped to it. A dollar bill with a test strip taped to it and a sticky note that says “I pay one dollar per strip. I need six strips a day to stay healthy and in control of my diabetes. Can you spare me two grand?”

I pictured hundreds, thousands, tens of thousands of envelopes piling up on someone’s desk. But whose desk? Who can help us?

If we send our dollars to the test strip makers they’ll have a good laugh and take our money and buy hookers and crack cocaine with it.

If we send them to politicians, once again, we’ll be getting thank you cards from the Hooker’s Union and the Columbian Cartels.

The American Diabetes Association comes to mind, but…. well it is no secret how I feel about them. In case you are a new reader, I feel they are more interested in razing, er, raising money from patients than helping patients. All they do in our state is sell T-shirts and host money-raising diabetes walks. They don’t help individual patients. They don’t have support groups. They don’t help at all. But still, they are good when it comes to things that require money, guns, and lawyers. Especially lawyers.

If we sent our protest to ADA, at least after our point was made and publicized the dollars would go to a more-or-less good cause.

So, fellow rebels with a cause. Check in via comments. Do like the basic idea? Who do you think we should burry in test strips and dollar bills?

Oh…and this poker hand doesn’t look too good and my back is to the door…

The Mix mix-up

Confession: I wrote this a little while back; but was never quite happy with it. I’m still not quite happy with it, but on my second glass of cabernet sauvignon I’m thinking it doesn’t suck all that badly…. so I decided to post it. My inner man has been missing the writing and I’m feeling called to start posting. I have things to talk about again.



In the beginning there was death.

Then insulin was discovered. First it came from various animals: it was crude, brown, unpredictable. But heaps better than death.

Next came a long line of “improvements” to insulin. Each generation better. Each generation more expensive.

Now we live thanks to the black-magic preformed in Big Pharma’s factories. God-only-knows-what goes in on one side of the factory; and liquid gold for the stock-holders comes out the other.

But a few steps down the evolutionary ladder from where we cling to life today, in the days before 24-hour basal insulins like Lantus and Levemir, there was an insulin called NPH. It had a medium-range duration of action and was often used to get us through the night alive. At some point it was “mixed” with fast-acting to reduce the number of shots we had to take in a day.

Recently, for reasons totally unclear to me as mix is rarely prescribed anymore, Lilly created a new 50/50 mix. It is half fast-acting and half NPHish insulin. It seemed like an unlikely product when my Lilly Rep dropped off a few pens at the clinic. They languished in my fridge for months.

Then, as some of you know, a change of insurance cost me my life as a pumper. Back to taking multiple daily shots I got to thinking about Mix. I wondered if it might work as a poor-man’s combo bolus. A combo bolus (dual wave to you Med-T speakers) is a pump bolus for a carb load followed by increased basal pumping for a period of time. Works great for pizza and other complex foods that have a carb spike followed by a long duration digestive element. (Read high fat, in general).

So I was thinking that the 50% fast might cover the sugars in the pizza crust and sauce; and the NPH might help knock down the secondary spike brought on by the meats, cheeses, etc. I brought a pen home and downloaded the volumes of fine print available on the product from Lilly’s web site.

The fine print convinced me that my idea wasn’t too good after all. I had it in my head, wrongly, that NPH lasted 4-6 hours. Nope. Much longer. I shelved the idea and now the 50/50 pen languished in my fridge in my office at the Lab, rather than languishing in my fridge in my office at the clinic. I actually forgot it was even there.

We took a trip up to Denver last week. I packed frantically after my 12.5 hour clinic day and at the last minute I realized my Humalog Turbo was almost empty. I grabbed a fresh Grey & White on our way down the driveway.

Two days later I was down to 20 units of Humalog. I took out the spare pen to put a pen needle on it before heading out to the aquarium with Rio and his God-parents, who were visiting from Jersey. I uncapped the pen to find the insulin foggy, cloudy, white. What the fuck?

It had been so long since I’d seen NPH I’d forgotten what it looked like. At first I was trying to figure out what catastrophe had wiped out my insulin! Then, with a sinking feeling, it dawned on me. I took the wrong pen from the fridge. In my hand I was holding a 50/50 Mix pen. Far from home. On a weekend.

We’d just bought a big box of Einstein Brother’s Bagels (I think I’ve mentioned before that I’m a piss-poor role model). If I use the fast-acting I have left, I won’t make it back home. Damn if I’m going to pay $175 for Humalog at retail even if I can convince a pharmacy on a Saturday to give me some without a script. Besides, even if I tried to, the credit card machine would explode in my face when I swiped my debit card. I’m in Denver with $5.12 in my bank account back home. I resolve to give the mix a try, what’s the worst that can happen?

We all know that Death rides a pale horse. It turns out that the Hypo Reaper rides a grey and white one, as does his girl-cousin the Hyper Reaper; and as you will soon see, they will both visit me within the next 24 hours.

Back to the bagels. Ever had an Einstein Brother’s bagel? Like potato chips, you can’t eat just one. I take 10 units. Soon my day becomes….. sub-optimum.

My blood sugar shoots up to over 300 in an hour. Crap. Then, hours down stream, the drop begins. And it’s bad. The most aggressive hypo I’ve seen since…. Well since I use to use NPH, as a matter of fact. I just could not turn the fucker around. I kept upping the carb ante every fifteen minutes and every fifteen minutes the BGL was lower. In the low 50s I was beginning to get…. Concerned.

Oh screw that, I was scared out of my pants.

It is a long story involving cell phones, a rendezvous in a parking lot, and getting the kid safely to where he couldn’t see what was going on. Sorry, but I see no point in giving myself a post-traumatic stress attack relating it, but I owe a debt of gratitude to the Dole Juice Company for their fine carb-packed Pineapple Juice product. After ingesting something in the order of 200 carbs I got back up to 130, where upon I crashed again. It was a thoroughly rotten day, and by the end of it I felt like the LAPD had beat the crap out of me.

It also shook up the wife, the kid, and my mother—none of whom have ever bothered to really learn anything about diabetes, don’t understand it, and have deluded themselves into thinking I’m really healthier than I am. Right after the discovery of insulin one of the early diabetes Docs called us the “erstwhile dead.” And that is true, we are really zombies kept alive only by the magic of these pricy chemicals.

The next day was the drive home. I thought I had enough Humalog left to cover the one meal on the trip. I was wrong. Tricky to properly guess the last dredges in those throw-away pens.

Then a crazy idea struck me. Mix really isn’t a mix at all. NPH and regular really don’t mix all that well. There is a whole ritual you have to got through rolling and flipping the pen to make it happily homogenous before you shoot up. I set the pen on end and let the heavy white NPH settle to the bottom. Ahhhhh…. Did I have pure Humalog on the top? I injected upside down and was very proud of myself.

Until the shit hit the fan.

180.

210.

244.

342.

More clear fluid from the pen top.

403.

456.

498.

This is not looking good for the home team. We are now in the waste lands of northern New Mexico on a Sunday night. BGL now 507.

In hind sight, the thick layer of NPH only took up a quarter inch in the bottom of the pen. I’m not really sure the rest was insulin. It could be distilled water at the top for all I know, and it sure acted like it. (I later learn that Mix pens contain free and suspended fast-acting insulin, mixed in with a good deal of inert filler fluid.)

As the sun sets and long shadows race across the barren prairie, I discover my blood ketone test strips expired in July. Crap. My stomach is turning summersaults. Stress or ketones? Hmmmm…. Hard to say. I’ve been in dangerous territory for five hours by the time we get home.

I grab a Humalog pen as soon as we get to the top of the driveway, making sure it IS a Humalog pen. They should really make the mix pens some other color for crying out loud.

I don’t want to screw around with a sub-q shot. I want IM, straight into the muscle, a much faster way to bring a hyper down. An IV shot would be even faster, but I’ve never done one on myself. Every frickin heroin addict can do it, but I don’t have a clue. Something we should teach in diabetes boot camp, huh?

Pen needles are too short to reach muscle even in a spaghetti-armed skinny like me. After some frantic searching I find an old-fashioned syringe. Needle isn’t as long as I’d like, but should do. I have Deb pinch up my deltoid to get the muscle as close to the surface of the skin as possible. I stab the needle in, pushing as deep as I can. It hurts like hell, a good sign we hit our target. I start to inject 10 units, but we have a miscommunication and she lets go of my arm early. The needle slips out and we have no way of knowing how much juice hit the target.

There is nothing to do. If most of the insulin went into the muscle a second shot would be…. Bad. If most of it when into the fat it will work…. At some point. If I don’t go DKA first.

For the next 20 minutes the BGL continues to drift upwards. I re-program a Precision Extra meter, lying to it about the date so I can use the expired ketone strip. It shows negative for ketones but with a strip a half-year out-of-date, I don’t know if I can trust the result.

Then slowly at first, then faster, faster, faster, faster my blood sugar begins to drop. To plummet. I lose 100 points in 15 minutes. My body is racked with terrible cramps. My arms turn to granite. My toes seize up with incredible pain. I frantically rub in aspercream, down valiums, and pray I don’t go hypo.

I stay up as long as my exhausted and excursion battered body can stand it. 3.5 hours down stream of the IM shot Guardian shows as solid level-out in the low 170s. A finger stick shows that it is actually in the mid-200s; but I trust the trend. The mind-numbing drop has stopped. The IM shot was a good call, though not easy on the body. I’m back in safe territory.

I take two more units sub-q, take my basal and collapse into bed; hoping to wake up in the morning but too damn tired to care one way or the other.