Ta-da! LADA!

With the sky as dark as night at 3 p.m. here in Maryland, and the rain pouring down without any sign of stopping, I thought I’d write an appropriately bluesy post.

For the last four weeks, I’ve been rolling along just fine with my pump site changes.  (Well, that is, after one hilarious change when I panicked because I couldn’t fit the new cartridge into the pump and called the Animas helpline — “IT DOESN’T FIT!!”, “Did you rewind the pump, dear?”, “Oh.”)  Everything had been going along smoothly.

Then came my site change Friday morning.  So, I mostly do sites below my waist, in an area I’ll call South Tummy.  I did one above the waist, in North Tummy, when I was just starting out, but it wasn’t comfortable.  So on Friday, I picked one of the last un-red-specked areas of South Tummy, aimed my big blue plastic infusion set, and stuck myself.

It seemed okay at the time, but then I went downstairs to eat breakfast.  For those who don’t own an Animas pump, let me tell you how a bolus works: the amount shows up on screen, and then the pump injects you with first the fractional part of the bolus, then one unit at a time, till you’re down to zero.  So if you’re bolusing 2.5 units, you get 0.5, then 1, then 1.

So my bolus for breakfast was something like 2.2 units.  And with each push of the pump cartridge, with the insulin traveling from the cartridge into the tubing, into the cannula, and finally into my body, I gave an involuntary yelp.  “Yow!  Ow!!  EEEOW!!”  A burning pain accompanied each infusion of insulin.

That’s a bad sign, right? I thought to myself.  Still, I thought I’d give the site the benefit of the doubt.  I packed an alcohol wipe and a new infusion set in my purse and headed off to work.

My office went out to lunch, something we do rarely, but it’s awfully fun when we do get around to it.  We went to a place called BGR — which, despite being a massive chain, seems to have no nutritional information available, a fact that irritates me to no end.  Still, they have an amazing soda machine that has more diet choices than you could shake a stick at, so I contented myself with a SWAG for the veggie burger and a Sprite Zero with strawberry flavoring added.

But when I went to bolus for that burger, it happened again: “Ow! Ow!! OW!!”  There was my confirmation: it was my first bad site.  When we got back to work, I made a quick trip to the ladies’ room, thanked Congress for the Americans with Disabilities Act (because the handicap stall was the only one big enough to allow me to maneuver a site change), and stuck myself again, this time in North Tummy.

My readings were high for the rest of the day, and I was at 282 (!!) when I went to sleep.  But I’d eaten some kind of sugary snack before bed, so I wasn’t too worried.  (Well, I was worried about long-term effects of a number that high, but I didn’t worry that there was anything wrong with the site.)

But the next day, Saturday, was when things officially went to hell in a handbasket.  The site was itchy all damn day.  Here are my readings from yesterday, which you can see increase in frequency as my desperation ratchets up:

11:33 a.m.: 140
2:06 p.m.: 215
3:43: 205
4:27: 193
6:13: 149
8:55: 203
9:46: 249
10:43: 239
11:02: 236
11:42: 212
12:34 a.m.: 196
1:18: 208
1:54: 194

With each ridiculously high reading I administered a little correction bolus, none of which seemed to do anything.

I think it was after the 1:18 a.m. reading that I said, “SCREW THIS SITE,” and migrated back to South Tummy.  Of course, as soon as the needle went in, I felt the same strange throbbing, burning I’d felt with the original site I’d used on Friday.  And now I know, thanks to the lovely bruise blooming on my abdomen, that this pain means I’ve hit a blood vessel.

But I was exhausted, and I couldn’t stomach doing yet another site change.  So I told my body, “I’m sorry, but you’re going to have to deal with this, I’m going to sleep.”  I was tired enough that the pain couldn’t keep me awake.

A check between 7 and 8 this morning revealed I was back down to 136.  Phew.  Oh, and the pain is gone.  I assume that the damage is done to whatever little blood vessel I hit, and my circulatory system has ceded that battle to diabetes.  The first of many, I have to assume.

This whole experience has been a much-needed reminder to me that even with the best technology available, we’re still at the mercy of flubs, flukes, and failures.  It’s hard for me to force myself to change a site prematurely — those infusion sets don’t grow on trees! — but what good is a pump if it’s at a site that doesn’t want to absorb insulin for whatever reason?  (And, seriously, North Tummy, what is your problem??)

Next site change, I think I’m migrating to Rear End.  I’ve certainly got lots of nice padding there!!

This month saw the release of Jay Radcliffe’s findings that he could hack his own insulin pump.  The response from the DOCosphere, so far as I’ve seen, has been gentle admonishment directed towards Jay and/or the media for “sensationalism” (see SUM or My Busted Pancreas, for example).  The other sentiment I’ve been seeing from a lot of folks in the DOC is, “I hope this doesn’t delay integration of pumps with CGMs.”

This is, to put it mildly, missing the point.  I’m writing this post from the perspective of someone whose profession has its roots in computer security — I’m paid to worry about stuff like this.  But you should be worried, too, as should anyone with any sort of medical implant or electronic assistance device.

We are just now beginning to see the convergence of medical technology and the Internet.  Right now, in order to get the data from my Animas pump to my computer, I have to balance the damn thing precariously on an infrared reader attached to my computer via USB.  How long do you think it’ll be before I can just connect my pump to a Wi-fi signal and upload everything wirelessly?  There are already medical implants that make connections to the Internet to send data to health care professionals.  I can’t imagine that pumps/CGMs will really be so far behind.

Right now, someone needs to be quite close to you to hack your pump.  (They also need the pump’s serial number, but this is not a secret value.  You’ve probably emailed it out and/or entered it on insecure web forms.  A determined individual could get it.)  Once we get integration with the Internet, that will be over, for the same reason that someone in Russia can hack your computer in Pennsylvania.

So we’re not safe now, and we’re poised to become less secure as technology advances.  But instead of protesting this fact, we’re worried about that the FDA might do something about this state of affairs.

Here’s the thing: there is a simple way to make diabetic devices secure.  It’s the same thing that makes it safe for you to buy books at Amazon.com, or do online banking, and it’s called encryption.  Pump manufacturers don’t want to include encryption in their devices, nor do any other medical device manufacturers.  Why?

1. Encrypting data takes more electrical power, so batteries run out faster.
2. Encrypting data takes more processing power, so it’s hard to keep devices small.
3. Paying engineers and production plants to add in encryption raises costs.

I’m not saying these aren’t understandable reasons.  Frankly, pump/CGM manufacturers are businesses, and they are in this game to make money.  I don’t expect them to do anything safety-related that the FDA doesn’t flat-out require.  No one should be shocked that even though these security problems have been well-known for years (yes, they have — Mr. Radcliffe is not the first to point them out), and yet we are no closer to a secure pump than we were five years ago.

What I am saying is, we need to advocate for our own safety.  Rather than whispering amongst ourselves that we hope the FDA doesn’t look too closely at this, we should be shouting at the top of our lungs: “The FDA needs to require secure wireless communication to and from medical devices!!”

Reacting in any other way to Jay Radcliffe’s findings is doing what the manufacturers are already doing: putting convenience and wishful thinking ahead of our safety and the integrity of our bodies.  I expect that from the corporations making the devices, but I expect better from the fierce advocates who comprise the DOC.

It’s been a skooch over two weeks since Jean Grey and I became joined at the hip, quite literally so.  (Well, it’s more the abdominal area . . . but you get my drift.)  It’s been something of a whirlwind, not least because Dan has gone to and come home from California within this time, and did I mention our wedding is in nine weeks?

But I’m adapting . . . slowly.  One of the biggest changes is in what I eat.  This coming Monday marks my third diaversary, though at the time I was told I was Type 2.  There are a whole lot of foods I mostly stopped eating as a result of that diagnosis.  I’d even managed to forget about most of them, over the last three years.

Then I got my pump.  And less than a week later, I found myself craving . . . Raisinets.  Raisinets?  Those little sugar bombs that masquerade as quasi-health food?  Yep, those.  A quick trip to the vending machine at work, and I had them in my possession.  I bolused for them and devoured them.

That started me down the path to other foods I’d forgotten I love.  Oreos?  Oreos, even scraping and saving the cream from multiple cookies, the way I did when I was a little girl.  Auntie Anne’s cinnamon sugar pretzel?  With lemonade, no less!  When was the last time I had lemonade??  And Pop Tarts, those desserts pretending to be breakfast.  When I was young, I could count on getting S’more Pop Tarts maybe once every three months, when my mother was feeling especially lenient.  I’ve had several just in the past two weeks.  And they’re delicious.

I don’t expect to transition to an all-chocolate diet.  This is more like visiting the paint store every day after being cured of colorblindness: you’ll get back to your normal life soon, but for now, you just have to see all those shades, from deep crimson to gorgeous royal purple.

I wish I could say I’ve been sailing along with perfect blood glucose numbers, but sadly, that hasn’t been the case.  My best explanation is that my body is in a bit of turmoil: between halting my doses of Amaryl and Lantus, and introducing Humalog, I’m not sure my metabolic system knows which end is up.  I started out strong, but I’ve been spiking this week.  (Lest you think Pop Tarts are to blame, I’ve been seeing numbers like 190 after a perfectly carb-counted breakfast of Kashi cereal and 1% milk.  Let us not heap scorn on the delicious Pop Tarts without supporting evidence.)  Even this morning, going to aerobics class before eating a thing, my blood sugar rose between waking and eating.  Clearly some of my settings are wrong.

My Animas nurse and I are trying to adjust, but it’s moving very slowly.  I’d rather go the scientific route — fast and see what happens to my BG numbers, then adjust basal accordingly.  Once that’s worked out, eat carbs, wait two hours, see what happens to my numbers, and adjust insulin:carb ratios accordingly.  She prefers guess-and-check.  We’ll get there eventually, in any case.

In the meantime, can I ask the DOC braintrust for book recommendations for new pumpers?  There are several tomes on the subject, but I’d like to know what people have found helpful.  Pumping Insulin?  Think Like a Pancreas?  Smart Pumping?  Something else?

Yesterday was my appointment with the Animas clinical manager for my area.  But before the appointment, I had to come up with a name for my pump and the accompanying meter/remote.  Normally I name my inanimate objects after their color — my iPod is named Cerulean, my Prius is named Cherry, my KitchenAid is named Ruby, etc. — and it just so happens that instead of the blue Ping I ordered, they sent me a gray one, probably in their haste to overnight it to me.

I was thinking about names for something gray, and though of Jane, for the Nine Days’ Queen.  My fiancé said, “Do you mean Jean?”, as in, the X-Men member.  Well, I hadn’t, but I liked that name much better.  And that meant the meter/remote was obviously Professor X.

Jean Grey (left) and Professor X (right)

Now we can talk about the appointment yesterday.  It was about three and a half hours, which thankfully I’d been prepared for.  I was surprised by how much stuff there was to learn how to use — the pump and the meter were pretty simple, since they’re just electronic equipment and fairly user-friendly.  But I’d never had to draw insulin into a syringe before, and that was a challenge.  Getting the infusion set in wasn’t so bad, but I was still surprised by the sheer number of steps there were.  I’m glad there are detailed instructions on the Animas website.

On the other end of the spectrum, I was pleasantly surprised by how easy it is to disconnect from the pump if need be.  The infusion set has a little clip-in for the tubing, and you can just unclip if you need to.  So, like my trainer said, “If you want to have wild, passionate sex, just take it out!”  (She is a funny woman, and very kind, too — I lucked out.)

My poor trainer had to invent my settings out of thin air, since I wasn’t coming from multiple daily injections.  But she seems to have a done a very good job from the meager data she had available.  I haven’t gone particularly low or high in the last 24 hours.  I suspect that my pancreas, which is still quasi-functional, is able to establish equilibrium from a certain range of settings, and she managed to hit inside that range.

Despite some awkward situations arising from having a bionic pancreas hanging off me 24/7 — for example, if you keep it clipped to your pocket, beware when it’s time to go to the bathroom!! — I already like this much better for many reasons:

1. I am in control.  When I was on oral meds and basal insulin, sometimes I would spend an hour making dinner, then sit down to enjoy it with my fiancé, test my sugar, and see — whoops, wicked high (say, low 200s).  I would always stare at my meter, as if it were the meter’s fault.  I have to eat, I would tell it silently.  What do you want me to do?  Now, if that happened, I would just increase my bolus.  No more staring helplessly at highs!
2. No more Amaryl.  I still want to write a post about why Amaryl is a bad idea for LADA patients, and I’ll get around to it.  But even if you’re not Type 1.5, Amaryl can be a real hassle.  Vertigo and GI disturbance are its most likely side effects, and I’ve experienced both, to my dismay.  I will spare you gentle folks the details of the GI problems, but they have been numerous, and at times (mostly when changing doses), serious.  I am ecstatic to wave bye-bye to that drug.
3. The cool factor.  Look, I have a pancreas hanging out of my pocket.  Where’s your pancreas, inside your body?  Well, yours is probably way more functional and low-maintenance, but mine fits in my pocket, look!

Oh yeah, I'm stylin'.

These instructions are going to be somewhat Animas-centric, but many of them will apply equally well to the other insulin pumps on the market.

1. Get the name and phone number of the clinical manager for your area.  You can get this from your doctor or by calling the pump help line.  If you call the help line, tell them exactly what you need — the local clinical manager’s information — and they will be able to help you.
2. Get your doctor to call in a prescription for insulin vials to your pharmacy.  Pick up your prescription (and, if your CVS is like mine, make sure they didn’t give you pens).
3. When you have a hard delivery date for your pump, call the clinical manager.  She may not want to make an appointment with you till you have your pump in hand, but get her to tell you what you’ll need to do before your appointment with her.  (I had to take three online courses and fill out part of the workbook that came with the pump.)
4. Do all your pre-appointment work.
5. As soon as the clinical manager will make an appointment with you, make one.  Be warned: this appointment could be up to four hours!!  You may want to start clearing your schedule when you get an idea of when your pump is going to show up.
6. Bring whatever the clinical manager tells you to bring to the appointment.  Forgetting anything means that four-hour block is lost!
7. Become bionic!

My appointment is tomorrow — I’m very lucky that she could get me in before next week, when I absolutely don’t have four hours to go for training.

I called the pump help line last night, who told me they would give my information to the clinical manager, but when she got in touch with me today, it was clear she hadn’t gotten my message.  So get the manager’s name and number from the help line, rather than accepting their offer to pass along your information.

I hope I can share more information as I continue to go through the start-up process.  It’s not particularly well documented, and there should be no uncertainty when it comes to a piece of equipment that’s so crucial to our lives.

Well, the Animas Ping finally came today, after a series of harrowing near-misses (forms that needed to be signed last-minute, malfunctioning computer systems).  It came late in the afternoon, after I’d spent the day waiting at home for it.  At least it was a beautiful day, not wretchedly hot like last week.  (Our house isn’t air conditioned; we have a window unit in the bedroom, but I wasn’t going to risk missing the UPS truck by retreating up there.)

I’d managed to finagle a last-minute appointment with my diabetes educator for 9 a.m. this morning, knowing my pump would not be showing up that early.  I went brimming with questions: how do I figure out all the settings?  Having never used fast-acting insulin, I have no idea what the right ratios are for me.  How often do I really have to change the site?  (My soon-to- be-mother-in-law says she keeps hers in way longer than the “official” amount of time.)  My fiance is going on a trip without me soon — what do I do to minimize the risk of lows when there’s no one around to help me?

But when I got to the appointment started asking, she shook her head.  “I’m not trained on that pump.  And your doctor is the one who’ll set those initial ratios anyway.”

I was utterly perplexed.  Wait, if I have to see the doctor before anything happens — how soon could that possibly happen??  Or do I just have to see a pump trainer?

I thought the answers would be clearer when I actually got the package.  I thought I would open it and there would be a letter in there, in big print: “CALL 1-800-XXX-XXXX TO SET UP A PUMP TRAINER APPOINTMENT.”  But there was nothing like that.  I tore through everything in the (surprisingly huge) box.  The most I saw was a warning not to do anything if I hadn’t been trained on the pump.

So I called the help line that they advertised in all their material.  It took me a while to get through to a person, who was very sweet, but seemed helpless.  “This is your first pump — ever?”  “Yes.”  “Oh, dear, you have to be trained.”  “Yes, I thought you could put me in touch with a trainer in your area.”  “Your doctor should be doing that.  Do you have a doctor?”  I bit back the sarcastic response — you need a doctor’s note to get a pump covered by insurance, after all, but she wasn’t trying to be difficult — and assured her I do have a doctor.  She promised to give my name and number to a clinical manager in my geographic area, but said there was nothing else she could do.  “But once you’re trained, we can answer your questions.”

Who dropped the ball here?  Was it my doctor’s office?  They were obviously aware the pump was on its way — they had to sign the medical approval forms, and they rushed a prescription for Humalog to my local CVS.  (Who screwed it up, but hey.)  Or was it the Animas sales team, for never noting I should follow up with my doctor’s office regarding training?  Or was it me and my unrealistic expectations?

The Animas booklet actually says as much, regarding that last question.  On the first page of their pre-pump workbook, there’s a questionnaire, and question #8 is, “Now that I have my pump, I should be pumping any day now.”  Then it says, “If you checked [number 8], you should have further discussions with your physician, diabetes educator and/or pump trainer before getting started.”

Well, forgive me, Animas, but I did believe I would be pumping any day now.  It’s not like anything in the promotional literature said anything different.  So I’m feeling like a disappointed kid on Christmas.  The gift came late — maybe Santa got lost on the way to my house! — and then when I opened it up, it was in a thousand pieces, with a little slip of paper saying, “Oh, we didn’t mention in the ad: some assembly required.”

It’s not just my disappointment.  It’s also that my work schedule is very unforgiving next week, and I can’t be running out constantly for more (and more and more) medical appointments.  I really just want to get started with this — it’s what my body needs, and I hate continuing on my oral meds for reasons I think I’ll explain more in a post tomorrow.  But I guess I’m stuck on them a little while longer.

A month ago, my new endocrinologist recommended I begin insulin pump therapy, primarily because I plan on having children in the near future, and Amaryl and my basal insulin are contraindicated for expectant mothers.

The month since then has been a study in jumping through hoops and slicing through yards of red tape, and it’s not over.  Here’s the short version of what’s happened so far:

1. My new endocrinologist gave me literature on Omnipod, Animas, and Medtronic and left me to decide for myself (though she warned that the Omnipod system is not yet as robust as she’d like).
2. I did mountains of research and decided on Animas.  I guess this was about a week.
3. I cleared the choice with my workplace.  (I work with a lot of electronic equipment, and we have to have all electronic devices okayed for use around our systems before we bring them into our workspaces.)  That process was over a week.
4. I contacted the regional manager for Animas, who put me in touch with a sales rep.
5. The sales rep had me fax a health questionnaire to him.  Oddly enough, it didn’t ask me what kind of diabetes I have.
6. The sales rep told me he needed a C-peptide test (which tests for pancreatic function).  I was confused by this, but told him I had one lying around.
7. It took me almost a week to find it, but I found my C-peptide test, along with the GAD autoantibodies test that confirms I have LADA.
8. The sales rep went on vacation last week and came back today.  (He’s entitled!  Just painting the timeline, not blaming the poor man.)
9. Today I learned from him that my C-peptide is “too high” for my insurance company — meaning I have some pancreatic function left, but that I could still qualify for a pump with an Insulin Antibodies test.  Which, if this Wikipedia page is any indication, tells you the exact same thing as a GAD antibodies test.  But, the rep said, the GAD test is “really old,” so my insurance company won’t accept it.  So they’re going to pay for me to take another blood test that gives essentially the same information.

And what is the point of all this number crunching, you ask?  An endocrinologist told me to get a pump, isn’t that enough?

Well, the rep said, “They’re trying to figure out if you’re Type 1 or 2.”

I’m neither, dammit!  I’m so tired of this pigeonholing that leaves me and all the other atypical diabetes sufferers out of the equation!  But to Aetna, my insurer, I must be either one or the other.  And if I’m Type 1, I guess I qualify; and if I’m Type 2, I guess I don’t.  Ironically, if I were Type 2, my C-peptide would likely be through the roof — your pancreas tries to pump out more insulin, in order to compensate for your insulin insensitivity.  My C-peptide is on the low end of “normal” (but apparently this isn’t sufficient for my body), which is still too high for them.

The sales rep told me, “Looking at your GAD numbers, there’s no way you won’t qualify with the Insulin Antibodies test.”  (Because?  Exact same information.)  So that’s a comfort.  But it’s still extra time away from work to pick up prescriptions and get bloodwork done, and more time for me on oral medications that have really begun to wreak havoc on my body.  Amaryl has given me GI problems for the past two years; last week, I had my first-ever bout with vertigo, which I suspect is partially the Amaryl’s fault, and partially a genetic predisposition.  I’ve stopped taking Amaryl for now, and while I’m consistently running 20-4o points higher at any given time of day than I was a week or two ago, I can’t tolerate the idea of another vertigo attack.  I was hoping for a quick resolution to the pump question, so I wouldn’t have to deal with Amaryl ever again, but at this rate, I may have to ease myself back on it, threat of vertigo or no.

I should say that up till this point, Aetna has been very good about covering all my D-related needs.  But now that we come to the $6000+ pump (plus all the insulin it entails), they balk.  You would think a physician’s order would be good enough, but unfortunately, I’ve got a ways to go.