Diabetes & Personal Space

Different cultures have their own idea of “personal space”. I’ve lived in other countries and worked in companies where my own concept of “umm… you’re a little too close…” has been questioned. It’s a matter of how you were brought up and how comfortable you are in your own skin combined with the ability to be perfectly fine with someone standing very, very close to you when having a business discussion.

This isn’t an anthropology blog (although, really, aren’t we all studying human behavior in relation to diabetes, so…), but I am starting to feel like my personal space is being invaded and I don’t like it.

I’m a hugger. A snuggler. A squisher and a giggler and a tickle monster when it comes to my daughter. I am sometimes the instigator but as The Kid has grown older, she wants to attack me with the same happy ferocity and fire the first shot across the bow of runaround shenanigans that I used to incite. And the sensors and infusion sets on my abdomen are getting in the way… and they hurt. And that hurts me.

The real estate I have on my body is limited (seeing as I’m limited in stature and subcutaneous tissue locations). The current trial I’m conducting with the Medtronic MiniMed 530G with Enlite only allows placement of the Enlite sensor on my abdomen. I had three failed sensors last week. Three. Every time one failed, I had to find a new place to put the next one.

I am placing my infusion sets on my upper abdomen to stay out of the way of waistbands that chafe. I’m reluctant to put the sets anywhere else (I rip them out of my arms and legs far too easily, even with taped down tubing), but I’m thinking I may have to rethink things here, because…

I’m running out of my own personal space because of diabetes.

braveheart-crazy-faceThe worst part of this all is the reaction that I have when The Kid comes barreling straight for me, screaming wildly (causing me to have Braveheart flashbacks) for a hug… I tilt my abdomen inward as if pulling away from her. To protect the sites in the small space I have to use, I sacrifice the full body hug that I want to give. Every time I lift her up, I must be careful not to scrape her legs against my abdomen. Tickle war on the bed begins with a “Careful of my pump, sweetheart…”

And of course, I know that I have options. Take all the diabetes gear off. Go back to MDI and no technology. I understand that I am lucky. The technology has kept me alive and healthy so I can complain about not being able to hug The Kid as tightly as I want… and I hope I’ll be able to continue to complain about that long after we send her off to university. By then, I am sure it will be she that complains that I am hugging her too tightly.

But today, diabetes is invading my personal space. The space that is sore from repeated pokes and prods and insertions. How do I tell it politely to step back?

I have no idea.

 

A Beeping Mess

headphonesI’m a beeping mess right now.

And beeping is not a substitution for an expletive, although it could be. Since my trial of the Medtronic MiniMed 530G with Enlite, I’ve become my own electronica band, beeping melodically throughout the day and night. No rhyme or reason, thus no rhythm at the beginning, but I’m starting to see some trends.

The MiniMed 530G with Enlite has a unique feature beyond the Threshold Suspend (The pump suspends if the Enlite sensor says your BG reading is below your “low” threshold.). It has a “predicative high” or “predicative low” setting, which will warn you if the algorithm believes you are going to go outside of the ranges you have set. When we did the initial setup, I put my low range at 80 mg/dl and my high at 200 mg/dl. (I drop pretty quickly, so I’m trying to catch it before I get to that point where I am not thinking straight and ignore the sensor readings in favor of…well, anything, because I think it my blood sugar will come up on its own while I’m walking around. Hint: it doesn’t.)

It is the new equipment adjustment period or is it my body? The food choices I make? (Pizza, oh pizza… I love you, but that 400 mg/dl? Even my broken pancreas rolled its eyes.) I beep, look at the pump, and it says that a low is predicted, yet less than ten minutes later, it says that a high is predicted. I’m still not used to the arrows that are on the MiniMed screen and everything is pretty wonky overall. But I’m learning, and that’s the point of this trial. I will figure this out.

The accuracy is not really in question at this point. How do I know? Because along with the MiniMed 530G with Enlite, I threw my Dexcom G4 sensor onto my arm on Thursday. There have been several times when both the 530G and the G4 have buzzed and beeped at exactly.the.same.time. If there’s any inaccuracy issues, I’ve found that sometimes it’s the G4 and sometimes it’s the 530G, but neither one is perfectly accurate all the time. Thus is life.

I haven’t had a night in which beeping hasn’t woken me up. The Threshold Suspend alarm has gone off, only to check my blood glucose level and find it to be a beautiful 110. Other nights, I’ve woken myself up and I’m low, except the 530G hasn’t caught it. (Until a few minutes later when I’m standing in kitchen over a glass of juice.) That’s been frustrating, along with the lack of response by the system to recognize that I’m coming up from a low, insisting that despite my canceling the threshold suspend, it throws up another beep and alarm and threshold suspend less than 10 minutes later.

John and I have had several discussions about the “is it me or the technology?” He maintains that it’s the technology, and to a large degree, he’s right. I need to train the technology to work with me… and I am also recognizing that I need to begin basal testing again. (It’s springtime in Paris and my insulin regimen. Hooray!)

I’ll have to adjust the predictive settings as well with the trainer, so that I can cut down on the beeping. I do find that it causes undue stress (and I’m full up on stress, thankyouverymuch) and worry that I didn’t have before.

So, if you need me, just follow the beeping. I’ll be dancing with the glowsticks in the corner.

Guinea Pig: MiniMed 530G Insulin Pump with Enlite

OLYMPUS DIGITAL CAMERAIn second grade, Mr. Harris introduced us to our class pet: a black, tan, and white guinea pig named Zipper. He (she?) squeaked quietly in a large cage filled with shavings in the back of the room while we learned about math and good citizenship. I got to bring him home for one of our breaks and loved on that little guinea pig while our cat shot daggers from her eyes. She was jealous.

Hi. Please call me Zipper for the next 90 days.

The MiniMed 530G with Enlite will become my insulin pump/sensor system, along with all that it entails over the next three months, thanks to a trial offered to me by Medtronic.

Here are the details of the trial, as I’m all into disclosure:

Medtronic is loaning me the entire system for the 90 day trial, including the 530G pump, CGM transmitter, Bayer Contour Next Link meter and test strips, Enlite sensors, reservoirs, and infusion sets. After the trial is complete, I will return all unused supplies as well as the pump, transmitter, and Bayer blood glucose meter.

I will be providing feedback to Medtronic through a survey and a one hour phone call after the trial is over. I will go through the entire set up as if I am a new pump user, including meeting with a Medtronic trainer and using their protocols and help desk. I will be changing my infusion sets every three days and my Enlite sensor every six days.

They won’t be putting words into my mouth (which is great, because it’s already full of my own) and I will share my honest opinion, my ups and downs, and what I think about the system. They know I’m not one to dance around the real issues, so you’ll get what you always get from me: unabashed and never whitewashed realism.

I’ve worn a Medtronic MiniMed pump for years and I’ve been happy with it. As I have said before, when I first started on a pump, there were only two companies in the game. As I was moving to Europe, I chose the “not Minimed” company, but when I returned to the U.S., Minimed had jumped so far ahead in technology, it was a no-brainer.

Time marches on and the market has expanded, not just with insulin pumps but with CGMs, and this is where my trepidation comes in. I had tried the Sof-Serter and abandoned it due to pain and accuracy issues. When I attended the Medtronic Advocacy Summit in January, I spoke with several Medtronic employees who assured me that the new CGM is less painful to insert and more accurate than before.  We. Shall. See.

Why I’m Trying The MiniMed 530G with Enlite

I’m curious. (Isn’t that enough?)

I love my Dexcom CGM. I love its accuracy, it’s ability to eek past the recommended seven day readings, and the fact that my husband can take it from me and still watch my numbers as I snuggle in the other room with The Kid. (And yes, he has brought me a juice box when I didn’t realize I was going low.) I love my MiniMed Revel 723. My fingers know the buttons in the dark. It’s been a part of me for so long. There are other insulin pumps out there and I’ve petted some of them, wondering if I would like them just as much if not more than what I currently have.

But this Threshold Suspend thing that will stop insulin delivery if it goes below a decided upon BG level? Totally looking forward to that if it does what it’s supposed to do. My overnight lows, even with the Dexcom, are still pretty rough. I’m sleeping through my alarms until I get to the 55 mg/dl or below “prisoners are escaping” blare. By then, I’m wobbly, cranky, and I eat until I stop panicking. Total barrel full of fun the next day. As the Threshold Suspend is unique to the Medtronic Minimed 530G, it’s a big deal for me. Will it be worth giving up my Dexcom? Would it be better for me than the upcoming but not yet released Animas Vibe? Can I get over the non-open standard nature of Medtronic data?  We. Shall. See.

We. Shall. See.

I keep saying: “We. Shall. See.” because you’re basically taking me home for 90 days. You get to watch me run around like Zipper and observe this experiment in ThePerfectD.com habitat. Fun photos! Great stories! An expletive or two! (O.K., I hope not…) Reality.

I would like a water bottle on the side of my cage, please. Maybe filled with caffeine? Can you do that for me?

My name is Zipper and I’ll be wearing the MiniMed 530G with Enlite for the next 90 days.

Squeak.

 

Accidentally Untethered…

1439534_15304554In the fifteen years of insulin pumping, I have been “off the pump” once for less than a day. (The child birth protocol forced me onto an insulin I.V. drip for about 12 hours.) I’ve been incredibly fortunate in that I’ve never had a pump fail.

The “untethered” regimen is extremely interesting to me, especially as our plans for the summer include frequent trips to the hot beaches, but not yet. It’s not time yet. My insertion set, however, had other plans in the middle of the night.

I accidentally untethered myself during sleep. At 3am, I awoke to my Dexcom beeping, but after looking at it with one eye, I can only assume that it had been beeping for a while. That arrow was reaching for the sky, and I had that sinking feeling that it was going to be a tough day ahead.

I checked my blood sugar, knowing that I wouldn’t like what I was going to see… and I wasn’t surprised. 406. That would explain the sandy desert in my mouth, but not the smell of bandaids. (Insulin smells like bandaids. Yick.) I got up and looked down at my insertion set site… it was still adhered to my body, so I gracefully tiptoed like an elephant into the kitchen to grab a vial of insulin to inject my correction bolus, ignoring the odor of eau de bandaid.

The cool water only temporarily parched my tongue. The injection stung as the needle sunk into my arm. And then I realized…

The insertion set was still adhered to my body, but the cannula had sneakily pulled out in my sleep. I must have rolled back onto the adhesive after I pulled it out.

Well, isn’t this a fine mess you’ve gotten us into, Ollie?

I hate inserting a new site without warming up my skin per a long, hot shower, but sleep… I wanted sleep… And so, barely awake, another needle slid into my body and in five minutes, I was back in bed, correction bolus, new insertion set, and a Dexcom that felt unloved because I had ignored it.

Less than five hours later, my blood sugar was 184. Two hours after that, I clocked in at 52 mg/dl.

Even when you think you are doing everything you can to stay within range, sometimes life unthethers you and the smell of bandaids fill the air.

The next time I untether, I’m going to actually use a long acting insulin. I hear that works a little better than what I did.

 

Diabetes Mine Innovation Summit 2013

Q: How do you fit millions of people with diabetes into a room that seats 120?

A: Send 10 Patient Voices winners to the Diabetes Mine Innovation Summit. 

2013 Diabetes Mine Patient Voices
2013 Diabetes Mine Patient Voices

On November 15th, an eclectic group of people converged on the Stanford School of Medicine for what has proved to be one of the most monumental days in my diabetes career. (OK, so it’s not a vocation that I would have picked for myself, but I treat it like a career, except there’s no time off and no 401K and the medical benefits are tepid at best.) Medical investors, the FDA, representatives from pharma and device manufacturers, non-profit icons, big names in diabetes, physicians, and for the first time ever, payers from a few large insurance companies all talked – sometimes with each other, sometimes at each other, and even at one point, yelling at each other about diabetes.

There was laughter, there was anger, and there was wonderment over the promise of technology and the frustration over the same technology. There were surreal moments and for the first time in what seemed like forever, a moment where I was left speechless, jaw gaping and heart pounding. Intrigued? Thought so.

Amy Tenderich, the woman behind Diabetes Mine and the Innovation Summit, welcomed everyone with a brief overview and the Patient Voices video, which I have already provided for you in a previous post. This summit was to share ideas surrounding the topic: “delivering on the promise of diabetes technology”. I’m going to give you a spoiler early in the post: the diabetes world is not even close to delivering on that promise.

Strip Safely and the FDA

Dr. Courtney Lias, the FDA representative of the In-Vitro Diagnostics division (overseeing pumps, strips, etc.) was first-up on the podium, giving an overview of the role that the FDA plays in the technology innovation machine. She stressed the importance of an open dialog between manufacturers and the FDA well before the tech is submitted for FDA approval. Requests for more data slow everything down, but if the FDA and the device manufacturer are skipping down the yellow brick road together, there are fewer surprises. (I don’t know how close a relationship the FDA and Dexcom, Tandem, and Animas have. There was a collective sigh heard around the country when the integration of Dexcom and these two pump companies were delayed for “more data”. Case in point.)

But what was a proud moment was the mention of the Strip Safely advocacy campaign held up as an example of advocacy that is working (for better or worse, I’m sure, in the FDA’s mind). As her slide titled: Patient Interaction stated: If our goals are aligned, can support our efforts. If not aligned or in sync, they can hurt policy implementation. Good communication is key. Bennet Dunlap, my partner in Strip Safely (He’s Batman. I’m Robin. I get to say “HOLY…..” a lot.) and I were tickled to see Strip Safely mentioned. We made a few waves with the FDA initially, but we also understand that they’re just as frustrated as we are. We need to work together to find a way to enforce the accuracy of the technology that is currently on the market.

Swept Away by Tidepool

This, my dear readers, was the reason I believe in the power of our community. Tidepool is a California Public Non-Profit that is putting into action my dream… or to be more accurate, it went beyond my dreams and straight into my fantasy. (No, not that one. Shhh…)

Tidepool is providing an open-source platform for real-time data from all devices I wear to the cloud, securely, sharing the data in real-time with anyone who should see it. Text messages to parents if their children go hypoglycemic while at school? Yep. Text message to physicians if a certain parameter is hit? Yep. It hit every one of my requests and some that I hadn’t imagined, including a little app called nutshell, which Brandon Arbiter created. You input a meal (in the example, it was Huevos Rancheros) and the carb count and how much insulin you take to cover it. The next time you eat that, you can look back and see if you went outside your acceptable range – and you can adjust accordingly.

I could type for hours about how much I admire what they are doing – and if they have a fan club, I want to be their President. (Heck, I’d make T-shirts and do spirit hands while cheering in their office. Too much? Probably.) They are a non-profit and as such, need a little financial help. Take a look at what they do and if you like what you see, you can donate to them. Out of all that I saw in relation to technology at the summit, this is the one thing that I am most excited over. That data would help a lot of us make good decisions in real-time. We need to support projects like this that will help us use the technology that we pay dearly to use.

Third Verse, Same As The First (Hat Tip to The Violent Femmes*)

Anna McCollister-Slipp, co-founder of Galileo Analytics and a T1 to boot, was blunt. Since the last DM Innovation Summit, nothing has really changed. We are still stymied by proprietary technology, frustration of the complexity and the cost, and the stall on the innovation disruption needed to make our lives with diabetes easier and more manageable. She was an excellent speaker, but left me feeling deflated and a little depressed. It’s not as if I didn’t know this already, but sometimes I want it sugar-coated Splenda-coated just a bit.

Passion With Payers

And now begins the heated, passionate part of the summit. As I mentioned earlier, my jaw dropped during the summit – and it happened more than once during the panel presentation of five different payers. It began rather sedately and I’m sure that those sitting up at the front of the room, including the moderator (who was incredibly patient), expected this to muddle along smoothly.

They obviously haven’t met the lot of us in the wild.

Insurance companies are not altruistic. They are a cross of risk-management gamblers, firefighters, and paper pushers looking to keep as much money in their pockets as they can. Despite my description, this isn’t a bad thing all the time. Capitalism is what it is.

Like Anna’s earlier discussion, they were blunt, but unlike Anna, they didn’t understand their audience. We are patients and doctors and manufacturers who were stunned to hear them talk, quite frankly, too openly about how they try to avoid new technology and paying out more than they have to, and that patients are not their customers.

My jaw was already unhinged, but another Patient Voices winner, Corinna, sent it crashing to the floor when she stood up and confronted the panel, interrupting the moderator, shouting:

“I don’t give a shit about your spreadsheets!” 

If I had a pin, I could have dropped it and heard it jingle jangle on the floor.

The silence was complete.

She wasn’t done. She told them what she thought and the floodgates opened, with other Patient Voices, advocates, clinicians and manufacturers representatives letting the panel understand what they thought of their policies and ideas.

The insurance company representatives became understandably defensive, with one stating that he felt personally attacked. In my opinion, if you’re in the insurance business and are sitting in a room of people who are denied over and over again for the items that keep them and their patients alive and healthy, please don’t expect to have roses laid at your feet or people thanking you for your cost-cutting limits and restrictions on strips and insulin.

Will they be back next year? Time will tell. I’m sure that some of them will wear thicker skin if they do attend.

Survey Says…

Diabetes Mine surveyed a large group of people with diabetes about technology and the results were presented by Kyle and… Oh, look. Me.

photo-2

We’ve got concerns. And complaints. And wishes. And if you want to see the survey results, the data is all right here.

Once again, I was struck with the feeling that none of this data is surprising to people with diabetes, but it may be to those who design the technology for us (and even a greater surprise to those insurance companies who often prohibit us from using the technology that does work).

That’s Not All

I haven’t even gotten to share the afternoon’s interactive creativity session and the closing presentation that rocked my world by Dr. Joe Smith of Westhealth. (Promise you I’ll give you that later. It’s worthy of a post entirely on the topic he covered.) I walked out of that room, my heart filled with the hopes and dreams of millions of us… and the desire to fight for the technology innovation that we need.

You want to hear some other perspectives? You should!

Scott Strange – I’m Sure All Patient Concerns Are Absurd 

Amy Tenderich – Exploring Disconnects & Black Boxes

Wil DuBois – A Skeptic’s View of Our Summit: Anger and Hope in Palo Alto

 

My thanks to Amy Tenderich and the sponsors of the Diabetes Mine Innovation Summit. As a scholarship recipient, I was reimbursed for my flight, lodging, and some meals while attending. I also received a free registration for the summit and a bag that included a Misfit Shine from Target.

*Prove My Love by The Violent Femmes is one of those songs that makes me think of my youth…and laugh.