Well, I don’t know what caused them – and Medtronic has certainly been willing to work with me so I don’t end up in a potentially troublesome situation (i.e. like Swampy, but asking “Where’s my Insulin?”), but I’ve decided to make a few changes on my own, just in case. But first…

Every time I’ve had a problem with my Revel, I wax nostalgia about my old Medtronic 515 which worked for years without even a hiccup. What’s different about that pump and this one? Well, first of all, the older one had much less precision with insulin delivery. I don’t know the numbers off the top of my head, but the old one only gave me the choice of one digit beyond the decimal point, while the newer one gives me a choice of at least two. That’s a tenfold increase in precision right there if you’re talking bolus.  But if you’re in the basal-domain, take the hourly basal and divide it by sixty minutes (or however often the pump delivers pieces of basal) and you’ve got some really tight tolerances.

Maybe those tighter tolerances mean a better ability to detect when the pump falls out of those tolerances? Though the official definition of a Motor Error is vague and circular at best,  The best definition I’ve heard of a motor error is that it occurs when the piston doesn’t line up where it’s expected. It makes sense to me, so I’m sticking with it.

Activity-Guard

This tiny thing might make all the difference

Getting back on track.  When I wore my 515, I always used the Activity Guard. It’s the little tiny clip at the end of the pump that keeps the reservoir from accidentally falling out — or something like that. My CDE at the time (who trained me on the pump, but is not a Medtronic employee) told me it’s pretty much useless. She never used it herself (she’s also a T1 Medtronic pumper) and found it a bit laughable that I bothered with this trivial element. Still, I used it religiously.

See the snapped locking-clip at the top? Proof that these things move.

Until one day, while spending the weekend with relatives out-of-state relatives and doing a set change in a pre-teen’s messy bedroom (understatement!), I lost it. Yes, I worried a bit, but then accepted that I probably didn’t need it anyway, so I went on with life, sans-Activity Guard.

When I upgraded to the Revel, I still went on without the Activity Guard. Could something have possibly bumped the tip of the reservoir? Possibly. Could that, in turn, have bumped the piston? Possibly. Could that have resulted in the motor error? Maybe.

This is Riva’s artwork, not mine. She owns all rights and deserves all the credit. Used with permission.
Source: typeONEderful.com

And last Saturday, while everyone was admiring Reva’s diabetes body-art, I noticed that she has the activity-guard on her pump.

So maybe it really is worth using.

Purging the bubbles

Aside from not using the Activity Guard, I was given another piece of possibly ill-conceived advice – this about starting a new reservoir/infusion set. I was told that, after filling the reservoir and connecting the tubing, but before inserting it in the pump, that I should use the little removable plastic plunger to begin filling the tubing. This would give me an opportunity to flick some of the air bubbles into the tubing which could be purged out during the priming process.

In reality, I noticed that when I did that, it fought me. I would fill two inches of tubing, then an inch would get sucked back out. Push another two inches, another inch back. I’ve done this since my very first site change without concern.

But now I wonder. Why is it sucking back out? Am I causing too much pressure inside the assembly? Am I creating some sort of a vacuum? Is the initial “push” damaging the first section of tubing?

Again, I don’t know. But if insulin is “backing out” of the tubing, the plunger might be getting pushed back as well. Or not.

It’s a theory, and I don’t know how credible it is. But that could certainly cause the piston to move and cause a motor error. Even days after the site-change.

Maybe,

This one’s probably my fault

During my most recent motor error, I made a surprising – and surprisingly embarrassing – observation. At work, I had been using a portable two-way radio – a typical walkie-talkie style, that day. When I went to get lunch, I put the walkie-talkie in my jacket pocket and forgot about it.

I bolused for lunch, and halfway through I got the motor error. That’s when I realized: my pump was clipped near my hip on the left side. My jacket was hanging over the pump. Inside my left jacket pocket, not too far from the pump, was the walkie-talkie.

I wasn’t using the radio, it was just sitting there idle. But it was there.

The folks on the phone at Medtronic always ask if I’ve been near any “strong magnetic fields”. MRI’s, airport scanners, that sort of stuff. MRI’s are strong; they can pull an earring right out of your ear (or wherever you may have it). A cell phone doesn’t count. I’ve asked — repeatedly.

Still, I’m going to make a conscious effort no to keep any kind of cell phone, walkie-talkie, or transmitter of any type (CGM transmitter excepted) on the same side of my body as the pump.

It shouldn’t matter, but it just might…

If you use a pump, particularly a Medtronic, do you make any of the “mistakes” that I did? Do you think they really are mistakes?

Today is May 21, 2013. It has been thirty-two years since my diagnosis.

Life goes on.

So today I have a choice: I can either tell you three blog posts I’ve read and loved this week, or I can tell you three new blogs I’ve found, or I can pick another wildcard and tell you my fantasy device.

Since it’s the last day of Diabetes Blog Week and I don’t really want to leave any stone unturned, I’ll do all of them (sort of).

First up: three blog posts that I’ve loved, from blogs I hadn’t known of before this week. In no particular order….

1. Share and don’t share. After finding out that anything she says can and will be used against her, this type double-awesome (husband has LADA, daughter recently diagnosed with T1) found it easier to just say as little as possible. This heartwrenching tale is told in the post I ain’t tellin’ you nuthin’ at Girl Glycosylated.
2. Memories. Passing out from hypoglycemia while lunch was burning in the oven? Yes, this happened while Rhonda was home alone. Somehow (and we don’t know exactly how) she pulled through, thankfully. When a meal-bolus is on-board, don’t follow the rules of Fifteen Wait Fifteen.
3. We, the undersigned. It’s not an unreasonable or far-fetched request. All we’re asking for is a little less packaging, a little less waste, a little less cost. A full vial of test strips shouldn’t be so empty. Makes sense, right? I’d sign Denise’s petition at T1Together.

And as for my dream device? If we’re revisiting a topic from last year, I’m re-hashing my post on this topic from last year. I still want to see an integrated insulin pump and CGM. Not just in the same box, but truly integrated. Where a “high” sensor glucose wouldn’t raise such a racket if sufficient insulin was on-board. Where I could be alerted if I’m coasting slightly above-target, but not in the danger zone, if there’s no sign of coming down. Where a low can be predicted not only from my sensor glucose trend, but from my IOB as well. I’m still waiting for my Fantasy Diabetes Device from DBlogWeek ’12.

I know today is Sunday, and pretty much nobody reads blogs on Sunday. Thank you for reading this one.

And this concludes Diabetes Blog Week ’13. As always, I’d like to thank Karen at Bitter-Sweet Diabetes for coordinating this year’s event. For a different perspective on this year’s topics, you can find all of the great posts written by talented diabetes bloggers here.

My very first pets were a pair of goldfish. My dad bought them for me as a young child as a reward (a/k/a bribe) when I stopped wetting my bed. I named them after the then-famous cartoon magpies, Heckle and Jeckle.

When I get my diabetes service-animal, I’m going to honor it by naming it after my very first pet. I’ll name it Heckle. But this Heckle won’t be a bird, nor will it be a fish.

Heckle the Second will be a goat. A goat would make a perfect pet for a person with diabetes. Not only will it happily eat up the specially-prepared sugar-free dessert that Great-Aunt Ida prepared (but nobody dared try), but a goat would clean up all the diabetes-evidence left in a PWD’s wake.

Dropped needle guards and lancet covers would be a snack for him. Infusion set packing and medical adhesive backing would be dessert. Free-range test strips would be the most delectable treat of all (fortunately, they exist in plentiful abundance). A goat would find them and take care of them without a worry in the world. (Note: you should still check your local regulations for proper disposal of medical waste.)

Of course, my goat wouldn’t be just any ordinary goat. It would be a special kind of goat. A scape-goat (obviously!). He’ll go with me everywhere, and if anything should happen to go wrong, Heckle will be there to take the blame.

Low blood sugar overnight? Heckle ate some of my dinner.

Insulin went bad? Heckle left the refrigerator door open.

Occlusion alarm? Heckle chewed the tubing.

Infusion set ripped out? Heckle turned the doorknob.

Got felt up at the airport? Heckle was… well… heckling the TSA agent.

My point is this: Heckle absolutely CANNOT be trusted … and that is exactly why I need him with me at all times. Because as long as he’s there, he’s guilty – and I’m exonerated from any wrongdoing. I could use the freedom.

Oh, and by the way. A couple of years after Heckle the Fish died, the bed-wetting started up again. And then I was diagnosed with diabetes.

I blame Heckle.

I’ve been thinking about this one for days, and honestly, I’m stumped. I had a few passing ideas, though…

1. Bad Medicine. Jon Bon Jovi sang about it – “You’re love is like bad medicine … there ain’t no doctor that can cure my disease.” It sounded pretty good — Jon seemed happy. If I understand the words correctly, the girl is the treatment and his lust for the girl is the “disease”, but it took a lot of lyrical analysis to reach that conclusion (and I’m not sure I’ve got it right). But I’m happily married, and there are so many ways that this could be mis-interpreted. So I think I’ll pass on that unnamed disease.
2. Hashimoto’s. I don’t know what it is, but I know it has something to do with the thyroid. I remember after being terrified of adding yet another ailment to my Medic-Alert bracelet, my pediatric endo tried to console me with “If I had to choose to have any disease in the world, it would be Hashimoto’s. Generally you don’t have to do anything, but if you do, you just take one tiny pill a day and that’s it”. It sounds like a pretty good deal to me, but since I’ve apparently already got it, I suppose I can’t quite trade for it.
3. Diaphragm Spasms. I took to Google and looked up “harmless diseases”… and the first answer that popped up was hiccups. Hiccups! At first I thought I’d found a winner — but then I tried to imagine life with hiccups every minute of every hour of every day, and it wasn’t pretty. I’d get no sleep, people would constantly laugh at me, and I’d constantly be drinking water (though I can already relate to the last one). It might even be worse than diabetes. Plus, I’m not so sure it fits the criteria of “incurable”.

This prompt sure is intimidating. It’s like going on to Priceline, telling them what you’re willing to pay, but leaving it up to the Internet gods to figure out what you get. Or maybe it’s like dumping your rack of seven Scrabble tiles back into the bag, hoping to get something better (but possibly getting something worse, or maybe the same).

Seriously — trading chronic diseases? It just doesn’t seem right. Do I really want to inflict my diabetes on someone else? I probably know how to deal with this better than the pour soul who knows nothing about the balancing acts, the IOB curves, or the carbohydrate SWAGs; but ends up drawing my D-tile from the Scrabble pouch (for two whole points!).

And besides, since the mechanics of this whole idea is a trade, the worldwide count of PWDs will still remain at 347 million. So who am I helping here? Me and only me. My gain is someone else’s loss. It sounds a bit selfish, doesn’t it.

So I think, for the sake of humankind overall, there’s no point in trading diseases. I’ll stick with what I know. I’ll keep it. To conjure up another Bon Jovi lyric, “We’ve gotta hold on, to what we’ve got.“

Besides, without diabetes, what would I blog about?

The store on 14th Street in NYC where diabetes hustlers try to wheel and deal their disease.

Just two short years ago, I was shy about my diabetes. I kept it to myself and kept all signs of it hidden.

Just two short years ago, none of these images would have been possible.

My grandmother gave me this hat last summer. I wore it everywhere. (Until I accidentally left it outside in the rain and it got covered in mud, then put it in the laundry. It hasn’t been the same since.)

* * *

This bracelet, and the effectiveness of its message, lasted longer than the LIVESTRONG bracelets some of my friends wore.

* * *

After moving to a new neighborhood, I learned that there’s a T1D living just around the corner. I thought it would be a friendly gesture to go with her in the 2011 JDRF walk — a nice “meet the new neighbors” kind of thing. It turned out to mean so much more than that.

* * *

Image from SurfaceFine.com, used with permission.

In 2012, I proudly joined Alecia’s (aka SurfaceFine) Stem Cells, not only raising money and bringing traffic across the Brooklyn Bridge to a temporary halt, but being very vocal in telling my friends and family (and in a larger sense, all of New York) that I’m proudly living with diabetes, even though I’d much rather live without it.

* * *

For years I would only put my pump in a faux-leather cell-phone case that covered the front display so no one could really tell what was on my hip. Just recently, I gave that up and went with the standard-issue holster with buttons that tell the world that I can “B an ESCape ACT” (that’s gotta be a metaphor for something, but I’m not sure what).

* * *

No photo of this encounter was available, so I improvised.

This was at the top of a water slide at Sesame Place (Langhorne, PA) last summer. I realized I had put my sensor on my arm rather than “below-the-belt”. I seriously contemplated not going on the rides, swimming with my shirt on, or pulling the sensor. In the end, I told myself Ahh, screw it. Let people see it and see what happens.

* * *

I thought that putting my diabetes on display would make me increasingly self-conscious.

I was wrong. It made me increasingly self-confident.

To me, that’s an accomplishment.

It’s Diabetes Blog Week again! For the next five days, Karen , author of Bitter-Sweet diabetes, will tell me what to write about. (She did this last year, too). Today, she wants me to write about a memorable diabetes day. I don’t know if this one is my MOST memorable, especially since the most significant diabetes-events tend to be the ones where I’m in no capacity to remember things, but here goes…

This happened over ten years ago. Add old-age to hospital-grade hypoglycemia, and memories get hazy, but I’ll do my best.

Back then, I was living alone in a second floor apartment in the suburbs of Philadelphia, PA. I was dating a girl who lived on the outskirts of Queens, NY. Because of the distance between us, we only saw each other on weekends – and the “dates” usually included an overnight stay.

Don’t judge.

Late one Saturday night (or perhaps early Sunday morning – and this is where my memory is really hazy) – I remember the following things:

• A glass of orange juice, which splashed all over because my hand was shaking
• Sweat-soaked clothes and sweat-soaked sheets
• NYPD officers
• An ambulance
• Someone reciting a blood glucose level – in the teens*
• An emergency room
• An IV

*That number was in mg/dL, by the way. For the benefit of folks who use mmol/L, it was less than one. Kinda sounds more dramatic that way, anyway.

There are other things that I remember, a bit later on.

I remember my girlfriend, who followed the ambulance a whole five blocks to the hospital, standing over the hospital bed, looking at my pathetic self.

I remember her parents, who only lived about 20 minutes away on Long Island, standing over the hospital bed, looking at my pathetic self.

I remember my parents, who lived in the middle of New Jersey and over an hour away (less if my father’s behind the wheel, it’s the middle of the night, and there’s an emergency), standing over the hospital bed, looking at my pathetic self.

I remember her parents and my parents, standing over the hospital bed, meeting each other for the very first time.

This wasn’t how I planned to introduce our parents to each other. There actually were no plans to introduce them, but if I had made any, they certainly wouldn’t have been like this. After the four of them left the hospital (I stuck around a bit longer), my parents followed her parents to their house, where they got some sleep and some breakfast. And probably got to know each other a little better too.

Fast-forward to the time I presented my girlfriend with a diamond engagement ring in August 2003. By that time, the daunting task of introducing our parents had already been taken care of. There was no planning needed, no prior “be on your best behavior” warnings, no preparation. It just happened – unplanned.

And everything was good.

It’s Diabetes Blog Week again! For the next six days, I’ll be participating in the Fourth Annual Diabetes Blog Week (my second; you can find last year’s posts here). I’ll be taking cues from  Karen and her assembled guest topic-suggesters Bitter-Sweet Diabetes.

Today’s Prompt: Recently various petitions have been circulating the Diabetes Online Community, so today let’s pretend to write our own. Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) – get creative!! What are you trying to change and what have you experienced that makes you want this change?

NOTE: This is not a real petition. I suppose it could become one, but without credible citations and fact-checking, it is nothing more than my own airing of personal grievances.

* * *

Use of this public-domain image does not imply endorsement of this article by Mr. Hancock, his heirs, or the financial services company of the same name.

WHEREAS the manufacturers of most diabetes devices (including but not limited to insulin pumps, blood glucose meters, continuous glucose monitoring systems) are developed in the United States,

WHEREAS most diabetes devices debut in overseas markets prior to commercial introduction in the United States,

WHEREAS the regulatory process in the United States adds significant costs to diabetes device manufacturers and these costs are ultimately passed down to consumers,

WHEREAS minor enhancements of diabetes devices is discouraged in the United States, as the approval process is too overbearing for small improvements,

WHEREAS the continued use of obsolete device features and outdated user-interfaces are encouraged over newer, enhanced technology when evaluated on the basis of speed-to-market,

WHEREAS the financial burdens placed on diabetes devices and diabetes patients by the current regulatory environment is a detriment to healthcare costs and to the economy overall,

WHEREAS the withholding of the latest life-saving technology from diabetes patients is a detriment to the health and well-being of Americans,

WHEREAS the United States can only regain its status as the highest-ranked nation in terms of innovation and leadership if government regulations facilitate that end,

WHEREAS the corresponding regulatory bodies in other nations have permitted the use of more advanced, sophisticated diabetes devices than in the United States without significant adverse effects.

WHEREAS machines can not and should not be used to offset poor judgement of the people who use them, and

WHEREAS overly burdensome “safety” features often lead to circumvention of these features or procedures, rendering them useless,

THEREFORE, WE THE UNDERSIGNED petition the United States Food and Drug Administration to modify its operations to best serve the people, the businesses, and the economy of the United States.

WE ASK that all medical device submissions be evaluated in a reasonable and timely fashion,

WE ASK for transparency and periodic public updates on the review of submissions, including a progress-tracker, timeline, and any relevant findings,

WE ASK that the FDA act in the interests of national health and economic progress, while exercising a reasonable but not excessive degree of caution,

WE ASK that the safety of diabetes devices be evaluated on the reliability of the device to perform as intended, not on the  ability of consumers to use the devices properly,

WE ASK, for diabetes devices that are not used for the administration of any drug or the dosing of any drug (i.e. continuous glucose monitoring systems), that a cursory review of the submission be sufficient to permit legal distribution of the device provided it is accompanied with a statement indicating that final FDA approval is still pending,

WE ASK that the FDA permit and encourage the development and publication of standard communications protocols, including both wired and wireless means, which will lead to interoperability of diabetes devices and third-party receivers developed by different manufacturers,

WE ASK that the Federal judicial system be empowered to subpoena the FDA for information relating to submissions currently or previously under review, to enforce timely reviews, and to rule on appeals.

Respectfully,

the Undersigned.

It’s Diabetes Blog Week again! For the next seven days, I’ll be unoriginal participating in the Fourth Annual Diabetes Blog Week (my second; you can find last year’s posts here) and writing about a variety of topics that I otherwise wouldn’t have approached.  Lots of other diabetes bloggers will be too, and you can learn all about it on this post at Bitter-Sweet Diabetes.

Today’s Prompt: Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see?

(Lets just disregard that earlier post about doctors being part of our team, shall we?)

Well, my doctor really seems to be quite informed and aware when it comes to diabetes. I don’t feel the need for him to better understand or sympathize what my life is like, nor do I feel like I need to hide anything from him. I’m generally an easygoing person and I accept whatever life throws at me, and I keep my emotions – for the most part – private.

So let me start with the second part first. What don’t I want him to see? Well – the rest of my family. It’s not that I’m ashamed of them or anything — in fact it’s just the opposite. I’m proud of them and love to brag about them. But I don’t want them to have a reason to see my endocrinologist. I don’t want to, ever again, be in such a position where a doctor and a loved one need to jointly figure out what to do with me. And I certainly don’t want them to be in a position where an endocrinologist needs to care for them! (but if they are, Dr. M gets my recommendation).

My doctor is well educated, both in theory and in practice. It was in his office where I learned about the three-day lifespan of a Medtronic sensor and the “loophole” that some people apparently use to circumvent it. He encouraged me to try a Super Bolus, whereas most other endocrinologists probably never heard of such a thing. He also told me a bit about the methods and findings in the LGS (Low Glucose Suspend) clinical trials.

The guy is connected.

So here’s what I wish he knew about me: I want to be connected too (speaking figuratively — though being literally connected to an insulin pump is OK too).

Who does he know at Medtronic? How do patient experiences/preferences/frustrations get communicated up the chain for consideration in future products? How can my voice be heard – and valued – by someone other than the phone rep who guides me through the Motor Error troubleshooting steps (just did that fifteen minutes ago, by the way)?

Does he have any connections at Novo Nordisk or Sanofi? Both of them have their US headquarters in our state; Sanofi is in our very county. LifeScan is in faraway California and Animas is in not-so-faraway Pennsylvania, but their parent company Johnson and Johnson is right here in New Jersey. So is BD. Surely there are forums, symposiums, or people that he’s participated in, and perhaps I could too, to learn more.

I’m not one of those thrice-a-year diabetics, who takes fifteen minutes out of every few months to learn something new. I’m looking to learn all the time — and learning is not only about what you know, it’s who you know. Knowing the diabetes-online-community helps me to know a lot. But I’d still love to know more. You know?