Skip to content

Posts from the ‘Diabetes Products’ Category

Animas Vibe: A Few Weeks Later.

Again, disclosure:  I work with Animas and have a sponsorship contract.  Here are more details on my disclosures. And this is the Mr. Plow theme song.  Mr. Plow would be great, about now, since the snow keeps dumping down outside.

It’s been several weeks since I’ve switched to the Animas Vibe insulin pump (with integrated CGM technology – doesn’t that sound like a rehearsed phrase?  How about “insulin thing with CGM thing built in and have you seen my coffee, pleaseandthankyou.”), and I thought I’d take a crack at some second impressions, since the first impressions were only compiled after a few days.

Talking ‘Bout CGM:  I am still into the concept and application of having one device that does the work of two.  While the Vibe still requires that I wear an insulin pump infusion set and a CGM sensor as two separate insertions, it removes the need for an external CGM receiver.  I wrote about this last time, but to reiterate:  I am okay with not using the separate receiver.  I’ve traveled a lot in the last few weeks and the first few trips, I brought along my CGM receiver so I could plug it into the SHARE port.

For the record, I still haven’t upgraded to the 505 software.  Judge all you want.  :)   Which may explain my identical CGM graphs.  (And, also for the record, I’m really, really excited to see the new Dexcom receiver.  That may change how I feel about clouding, as it would be much simpler.)

But then Chris and I came to realize that we aren’t good at this whole “data sharing” thing.  As much as it sounds like a good plan in theory, we aren’t good at the application of it.  I think this becomes a patient-specific preference sort of thing, and for this PWD, I’m not a data-sharer.  But as I mentioned with that previous dead horse that I keep flogging, I like options.  Love them, actually.  And anything that gives data options – LIFE options – to people touched by diabetes, I am all for it.

(That sentence was a grammatical nightmare.  Ignore the sloppy parts and move on, yes?)

DiasendYesterday, for the first time in a long time, I downloaded (uploaded? loaded.) my data to Diasend.

The data collection portion is cumbersome.  I hate dongles and charging cords and all the extra beeps and wires required to make sense of diabetes data.  (Which is why I’m such a fan of the Verio Sync idea, which uses bluetooth technology to automagically suck the results off my meter and spit them into my iPhone, but there are issues with that system, too, because it’s only iOS compatible.  Pluses in one way, minuses in another.  But see aforementioned “I love options” sentiment, because it still applies.)  But I did download my pump data, which also downloaded my CGM data.  And, because I was feeling ambitious, I uploaded my glucose meter, too.

So this was my first time looking at Diasend with information about my insulin doses, glucose meter results, and CGM results on the same screen.  (No, I am not sharing my results.  My numbers have been absolute shit lately and I’m not going to pepper my blog with confirmation that I have diabetes.  I’ll let the c-peptide test that’s required by my insurance in order to cover my insulin pump serve as that confirmation.  Yes, that’s a thing.  Yes, more on that later.)

Diasend is good for granular information, but the information on the “compilation” tab was ace for me.  Seeing my blood sugar averages based on time of day was powerful.  (I have midnight to 11 am nailed and awesome.  Everything not in that time frame needs a solid snuggle these days.)   As a Mac user who hasn’t explored the new Dexcom/Mac Portrait (I’m woefully behind on everything that doesn’t involve Birdy these days), seeing my Dexcom data on my laptop is amazing.  I’ll be exploring Portrait in the next few days but in the meantime, I’m happy that information can be siphoned over to Diasend.  And it puts the constant flow of data into digestible context.

Pump Stuff.  Since I was a Ping user before, using the Vibe feels familiar and easy.  I’m still glad this sucker is waterproof and the button clicking process is familiar to me.  All of that feels the same.  One thing I have noticed is that the more my CGM needs attention, the faster the battery in my pump needs replacing.  This is annoying, but makes sense despite the annoyance.  For the first time ever, I’ve invested in lithium batteries for my pump and it seems to hold much better than the alkaline ones I have been using for the last … forever.  But overall, the pump feels familiar and comfortable, and since I hate change, that familiarity is a plus for me.

Alarms, for whatever reason, remain easier to hear and feel when they are coming from the pump.  This was a huge concern of mine because I thought the pump alarms would be muffled by clothes and bedding, making them hard to catch.  But I actually respond to low and high alarms more readily on the Vibe.  I am not sure why.  Maybe because it’s attached to my hip and I feel the vibration?

What remains to be seen is how the changing state of Dexcom progress will affect my feelings about this pump.  Right now, it’s the only one integrated with the CGM I already use, so that’s a huge plus.  But I am concerned about the fact that the software in the Vibe is already behind on the current Dexcom system.  I know the FDA process creates hurdles that are hard to clear, but since the Vibe has already cleared the Big One, can I expect that updates and upgrades will come fast and furious?  As a PWD using the Animas product, I hope this is the case.

And lastly, I’m hoping to have this pump covered by my insurance company.  I’m still trying to get a c-peptide test done (travel, snow, and issues with fasting) to fulfill the requirements issued by Blue Cross Blue Shield, so that journey remains ongoing.

Thankfully, I’m still pretty effing sure I have diabetes.   So yay?  Yay.

Jack Frost Hates Me.

Over the last few weeks, the elements haven’t been particularly forgiving.  Arctic temperatures blasting their way through New England, feet of snow falling by the clump … my whole front yard looks sponsored by Frozen and I can’t let it go because I have to fucking shovel it.  Despite having a heavy winter coat and gloves and all the “right” clothes to keep my body warm and protected, my skin is still suffering in this winter wonderland.

Being skinned alive by Jack Frost is not good for diabetes device real estate.

Even though I do my best to mitigate the rash that blooms after wearing a Dexcom sensor, my sites still turn red and scaly (sometimes not for a few days, which makes for a fun surprise).  The Toughpad works to keep the blisters from cropping up, but it’s not a perfect system.  The winter weather makes it worse, causing the scales to go full-dragon and itch like mad.  Same goes for insulin pump sites.  Even though those are only stuck to me for three days (at most), they still leave a red ring and the aforementioned scales.

As far as diabetes crap goes, I love my insulin pump.  And my CGM data.  These two devices have put diabetes into context and have helped turn down the once-constantly-boiling back burner to more a simmer.

(the tools I usually use to keep my Dexcom from eating me)

Which is why it pisses me off when my skin makes wearing my devices uncomfortable.  The frigid air outside and the unnaturally dry, warm air inside has left my skin dry, scaly, uncomfortable, and unable to host invasive devices for their approved time frame.

So for the last few days, and for the next few coming, I’m taking a reluctant break from my Dexcom sensor, and will probably take a short pump break, too (though it’s less pressing since the sites are so much smaller).  I hate taking breaks that aren’t “by choice” but instead are forced by a lack of diabetes real estate.  (Yes.  Waaaaaaah waaah.)

Maybe this will be a good opportunity to tune back into relying more on my meter than my CGM.  Or maybe it will teach me a higher level of appreciation for the devices I have access to.  Maybe it will teach me to drink more water and to take colder showers and to moisturize more?  Maybe it will annoy the absolute fuck out of me?  And maybe I’ll do that to you by ranting about it?  ;)

Regardless, at least I can itch madly and apply this smells-like-a-stick-of-chewing-gum lotion all day long until my skin stops hating me.

 

#WeAreNotWaiting: The (Not So?) Brief Story of Tidepool.

Technology has scrambled forward by true leaps and bounds in the last few years, making my Clinitest urinalysis kit of 1986 seem pretty archaic.  Now, people touched by diabetes can see their glucose levels with a flick of their wrist, and there’s more on the horizon as far as data and diabetes management.  Today I’m so happy to have Howard Look, President, CEO and Founder of Tidepool, sharing his personal diabetes story on SUM, talking about why he simply cannot wait.

*   *   *

“Katie, why are you going to the bathroom again?”

“I have to go! And I’m SOOOO thirsty!”

Our story is probably familiar: We were on a weekend camping trip and all together in our family-sized tent. Katie, now 14 but 11 at the time, had gotten up THREE TIMES that night, unzipping the tent and wandering with her flashlight to the campground bathroom. The next morning, breakfast was the usual campground fare – several glasses of orange juice and pancakes.

By noon, Katie was throwing up.

It was an exciting time in our family, full of possibility. Katie had just started 6th grade at a new school. She was making new friends, trying out for the softball team, and was ready for new challenges and a new chapter in her life. Who knew.

Katie one week before diagnosis. I look at this now and realize how much weight she had lost.

Katie one week before diagnosis. I look at this now and realize how much weight she had lost.

A day later, we were at Lucille Packard Children’s Hospital at Stanford. I just wanted someone to say “Don’t worry, your daughter is not going to die.” I wasn’t so sure. After a sleepless night and a morning full of words we didn’t understand (beta cells, boluses, ketoacidosis…) our heads were spinning. Fortunately, our day-one angel, Jen Block, looked Katie straight in the eye and calmly reassured us: “Katie, I just want you to know that everything is going to be OK. You are going to be fine. I have type 1 diabetes just like you.” Jen showed Katie her insulin pump and explained how she could have the same thing. In Jen, I could see a grown-up Katie. And finally I knew everything was going to be OK.

Well, sort of…

Like Crawling through Broken Glass
I’m a nerd, a Geek Dad. I’ve lived and worked in Silicon Valley since college and have been really fortunate to be a part of some really cool things: I was on the founding team at TiVo and was VP of Software at Pixar. Just prior to Tidepool I was VP of Software at Amazon.

Like geeks do, I dove in to try to understand what T1D was all about. Katie had mastered computing doses and giving herself shots really quickly (great at math, that’s my girl) and we saw the value in an insulin pump and CGM right away. Within three months, Katie was on a pump and a CGM.

I tried to get us up and running with the software that came with her pump. Bzzzzzt. No sorry, thank you for playing. It won’t work with your browser. OK, you made it work with your browser, but your plugin is out of date. OK, you updated the plugin but BEWARE: it’s an unsigned app that you shouldn’t trust. OK, you are willing to take that risk, but your new computer has USB 3.0 and the USB stick isn’t compatible with that.

Some people wonder why almost no one uploads their pump data… I think I know why: because getting it to work can be like CRAWLING. THROUGH. BROKEN. GLASS. And remember: I’m a software guy, a Geek Dad… I usually LIKE dealing with this stuff. But I found that even if you could get it all to work, the software didn’t provide intuitive, actionable insights.

To make matters worse, Katie didn’t like her first CGM. It hurt to put it in (we called it “the harpoon”) and it wasn’t accurate for her. Fortunately, the Dexcom G4 had just come out, which worked MUCH better. It hurt less and gave readings that were dead-on with her BGM.

But unfortunately, Dexcom Studio is PC only we are a Mac family. I sorted that out (with Parallels for Mac), but still, we had one piece of software for the CGM, a different piece of software for the pump and BGMs, and no way to see it all together in one place.

I asked myself, over and over:

Why is this so hard? And WHY ISN’T ANYONE DOING ANYTHING ABOUT IT???

Right around that time, fellow Geek Dad, T1D guy and tech blogger Scott Hanselman posted
The Sad State of Diabetes Technology in 2012”. I was fist pumping and shouting “Yeah! What he said!!!” while reading it. If you scroll halfway down the comments, you’ll see me chiming in:

“… I have a dream that a smart, motivated team of people could create ‘The Mozilla … of Diabetes Technology.’ … What if we … did it in a way the wasn’t constrained by VC funding and sought goodness, not profit?”

Scott’s article catalyzed me to take action. I met with anyone that would talk to me and looked for people who felt like I did. Jen Block introduced me to Lane Desborough (at Medtronic at the time), who introduced me to Aaron Kowalski at JDRF, who introduced me to Brandon Arbiter, who had invented this amazing app called Nutshell. I had found my peeps.

Jen also introduced me to Dr. Joyce Lee, who connected me to Dr. Saleh Adi at UCSF, and to Steve McCanne, yet another Geek Dad (or as I called us “D-Dads with Attitudes”). Steve also has a teen daughter with T1D, and had been hacking some code to make it easier for Dr. Adi to review his daughter’s data, all in one place. When I saw what Steve and Dr. Adi and the team at UCSF had put together, I knew it was the start of something beautiful.

#WeAreNotWaiting
Fast forward to now, early 2015. Tidepool has existed for just over a year and a half and I’m really proud of what we’ve accomplished in a very short period of time. As the hashtag says, #WeAreNotWaiting.

In the beginning, we got funded by some very generous donors. That allowed me to hire an amazing team of developers and designers. Six of us have T1D, and two of us have family members with T1D. We like to say “We have pancreas in the game.”

Our mission is simple: Deliver great software that helps reduce the burden of managing T1D.

We’re tackling that mission in a pretty unique way:

  • We are a non-profit. We’re not in this for the money. We’re in this to help make things better for the whole diabetes industry. By not competing, we can get more done.
  • We are an open source project. This lets us leverage a vibrant, motivated community. It also means we are giving away the source code for free.
  • We feel strongly that design and usability matter. T1D is a burdensome disease. You don’t need the software to be making it worse.
  • We are building everything with the utmost attention to privacy, security, HIPAA and regulatory compliance. Yes, this is more work and takes longer, but without this, we can’t achieve broad distribution and help as many people as possible.

Most importantly, we are helping the industry see the value in liberating device data. We’ve made it very clear: We believe that patients own their own health data. People should get to choose what software they want to use to for their diabetes therapy with that data.

We’ve made great progress on the open data front: Asante, Dexcom, Insulet, Tandem and Abbott have all given us their data protocols. We also have great supporters at Animas and Medtronic and they are considering it. We will also implement and support the IEEE 11073 standards for BGMs, CGMs and pumps, which will make it that much easier for device makers to create interoperable products.

What is Tidepool building, and where are we headed?
The Tidepool Platform enables the next wave of diabetes applications. It’s secure, HIPAA-compliant and lets you choose how you want to see and share your data. We hope that it will foster a whole new ecosystem of applications that help reduce the burden of T1D.

The Tidepool Uploader gets data from any diabetes device that has made their device protocol available.  It’s a Chrome Extension, so it works with Macs and PCs (and Linux, too, if you’re a geek like us :) . JDRF generously funded development of the Uploader. The project will also make it easier to gather data that will be useful to artificial pancreas researchers.

Blip is the home for all of your data. You can see it all in one place. You and the people who support you can use Blip to look, learn and make informed decisions together. Blip is currently being used in a pilot study at UCSF. We’re talking to other clinics like Stanford as well. We hope to have Blip ready for broad testing and deployment in the first half of 2015.

Nutshell is a mobile app that remembers what you ate and ties it together with your diabetes numbers. The next time you order that burrito, you can figure out how much insulin you need with confidence. Nutshell currently exists as a working prototype and we’re looking for funding to take it further.

Going forward, we have lots other projects to tackle:

  •  We’ll be asking users if they’d like to donate their data to an anonymized research database. We plan on exposing that database freely. We also plan on creating the “Tidepool Query Language” and APIs that will enable researchers to easily use our platform to conduct studies based on device data.
  • We will integrate fitness data from apps Strava and RunKeeper and devices like FitBit and FuelBand.
  • Our platform is the perfect foundation for artificial pancreas research and commercialization.
  • We’d love to build an advanced decision support interface that will help people and their doctors optimize their insulin therapy. We have a prototype of this called Sonar.
  • Some device makers will choose to let us host their data and applications. For them we’ll need to expose APIs so they can access their device’s diagnostic data and let them connect directly with their customers. We hope to generate modest revenue by doing this so that we can become a self-sustaining non-profit.

Which brings us to…

How you can help?
Most importantly, we need your financial support. So far, we’ve had some very generous donors who have supported us. Unfortunately the funding that we have received up to this point is not enough to get us to where we need to be.

The good news is that we have a solid plan to generate just enough revenue to break even and become a self-sustaining non-profit, hopefully by the end of 2015. That means that you can think of your donation as an investment in the future of diabetes technology. There is no financial return on this investment since we are a non-profit, but you will definitely rack up Good Karma.

There are other ways you can help to. If you are a developer, tester or UI designer you can volunteer as a contributor to the project. Join us at https://developer.tidepool.io for more detail. If you have experience with regulatory filings, you can help us with those. It’s a lot of work!

If you want to stay in touch with us and hear about updates, you can sign up for our mailing list at tidepool.org, join us at facebook.com/Tidepool_org and follow us on Twitter @Tidepool_org.

Thanks to Kerri for letting us take the mic for a little while, and to the entire diabetes community for your ongoing support of our efforts.

#WeAreNotWaiting

Cheers,
Howard

*   *   *

Howard Look is the founder and CEO of Tidepool, a 501c3 non-profit with the mission of reducing the burden of managing diabetes through technology. Prior to Tidepool, Howard  was on the founder’s team at TiVo where he was VP of Software and User Experience. He was also VP of Software at Pixar, where he led the team developing Pixar’s proprietary film-making system, and at Amazon where he ran a secret software project to develop devices that leverage cloud services. Howard has a BS in Computer Engineering from Carnegie Mellon University. His teenage daughter has T1D.

Animas Vibe: First (and Quick) Impressions.

Again, disclosure:  I work with Animas and have a sponsorship contract.  Here are more details on my disclosures.  I link to my disclosures more than I link to cat .gifs, which is saying QUITE A BIT.

As I mentioned, I’m testing out the Animas Vibe.  Here are my first, quick impressions after a few days using the Vibe.  (What, you wanted some long, flowery introduction paragraph?  I’m out of words.)

First things first. Change can be awkward and uncomfortable.  When I switched from Medtronic to Animas back in 2010, I had trouble with the switch not because of the pumps themselves but because of the change, in general. Wearing an insulin pump means being connected to a small box and tubing 24 hours a day, so you really get to know that box/tubing combination.  The curves and edges of the pump  became something I knew by heart, and wearing a pump that was even half a millimeter different than whatever I was used to made me grouchy.  It took me about three weeks to become used to wearing the Animas Ping pump, and about a month and a half to become entirely used to the differences in filling the reservoir, changing the infusion set, responding to alarms, etc.  (I experienced this all over again when I took the t:slim pump for a spin over the end of the summer.  The pump itself was fine but the different size/shape/process made me grumpy like this cookie and I was less accepting of the pump because it wasn’t what I was accustomed to.  This isn’t a comment on which pump is superior, but a commentary on why the learning/acceptance curve, for me, is a true curve.  It also illustrates my hate for change.)

I was set up on the Animas Vibe on 12/31, so I haven’t had this thing for more than a few days, but going from Ping to Vibe was simple in terms of learning curve because I’d already done that curve.  I have worn an Animas Ping since 2010, so the routine is familiar.  Keep that in mind as you read through my perceptions, as they are colored by familiarity.  And coffee.  (I had two cappuccinos with dinner.  TWO!!  Bees in fingers [h/t CSparl].)

CGM Integration.  I was unsure how I’d feel about integration, to be honest.  I like having my Dexcom separate sometimes, and things like CGM in the Cloud and Share are important to me because I most-often travel alone, so having my data streaming to the cloud is an important safety feature.  But, on the whole, I don’t stream my data (with overnight exceptions as noted).  Basically, I am the main person who needs access to my data.

However.  (And this is a big however.)  I like, and appreciate, options.  I don’t have the option of ditching diabetes, but I do have options on the tools and technology I use to make sense of diabetes.  I LOVE having the Dexcom data showing up on my pump screen.  Love, love, love.  Why?  Because I always have my pump clipped to me.  I didn’t realize, until a few days ago, how often I was keeping tabs on my external receiver, bringing it from room to room with me, and keeping it clipped to my purse while I was out of the house.  I went for a run the day that I hooked up to the Vibe and it was exciting to bring only one device with me.  With a tube of glucose tabs in my pocket and pump clipped to my hip, I was good to go.  It felt liberating.


The best part, for me, is that I can run my separate Dexcom receiver at the same time.  Yes, they can run simultaneously.  (No, I have no idea how that impacts the battery life of the transmitter.  Nor am I certain this is a sound idea.  But I’m doing it anyway.)  Both the Vibe and the receiver need to be calibrated separately, but for the times when I’m away for work, I’m happy I can still make use of the Dexcom Share without getting all weird. Options where there once weren’t any at all; I’ll take it.

(And I haven’t had a chance to test the accuracy of the receiver vs. the Vibe, but since I haven’t yet upgraded my receiver to reflect the 505 algorithm [we don't have a PC], I don’t know if my comparisons would be best.  Once I hijack someone’s PC and update my receiver, I’ll circle back on this.)

One concern I had about integration was whether or not I would hear the alarms on the pump.  In setting up my pump, I customized my alarms to reflect a vibration for any low blood sugars and a beeping for any highs, thinking that a vibration would be good for middle-of-the-night low warnings.  While I haven’t had much time to test the highs and lows (thankfully, numbers have been reasonable for the last few days), I did have one 2 am low blood sugar and the vibration woke me up.  I’ll have to wait a few more weeks/months to truly test how responsive I will be to the alarms.


Graphing it.

A photo posted by Kerri Sparling (@sixuntilme) on

One other concern I have is about the color indications for the different numbers.  I’m a creature of habit (see above bit about hating change) and I am used to the way that the Dexcom G4 receiver lays out blood sugars, in terms of color.  Ketchup and mustard, you know?  Highs are yellow, lows are red, and white means don’t touch anything because in range.  However, since companies cannot sync up their shit in a way that makes things easiest for end users (aka the PWD), the CGM graph on the Vibe is entirely different than that of the G4.  On the Vibe, highs are red, lows are blue, and in range is green.  For me, this has been a weird change because I like at-a-glancing at my CGM throughout the day, and now I need to readjust my mindset for what “red” means.

Screen Resolution.  This might seem ridiculous, but there’s a new feature on the Vibe that allows for the brightness to be turned up/down with a click.  The button on the edge of the pump with the little lock (or lightbulb, or whatever that icon is)  makes whatever screen you’re on brighter, or less bright, with a click. I like this more than I should, I think.

Food Database.  I haven’t used the Ping meter in a few years (I switched to the Verio when it came out, and am now using the Sync), so I haven’t done much with the food database in the past.  On the Vibe, the food database is built into the pump, so if I go in to give a bolus and use the EZCarb bolus, I can access a customizable database on the pump itself.  I haven’t had much time to play around with this feature yet, but I plan to as I fiddle around with the pump.  (One note:  on the “snack” screen, the food options are all junk food.  Chocolate cake, cannoli, donut holes, key lime pie, just to name a few.  Who categorized these as “snacks” instead of “junk food”?  Confused the small, rational part of my brain.)

To that same end about not using the Ping meter for a while now, it’s important to note that the loss of meter remote capability in the Vibe vs. the Ping did not matter to me at all. I haven’t used the meter remote option in ages, so not being able to use it with the Vibe made zero difference to me. Your preferences will vary, of course.

WearabilityFor better or for worse, this pump does not feel different on my body because it is essentially the same physical pump shape/size on my body.  Having worn the Ping now since switching to Animas, the Vibe feels the same.  But, for the record, I did try a blue pump this time instead of my time worn silver one, which feels sassy.  Also, not needing to carry the Dexcom receiver makes for a lighter purse.  (And when my purse holds glucose tabs, my meter, an insulin pen, car keys, wallet, gum, Batman, and a deck of Crazy Mates on an average day, one less thing is awesome.)

Battery Concerns.  Since it’s only been a few days, I don’t know how quickly running the CGM and the insulin pump will burn through the battery.  As it stands now, my Ping went through about one battery per month (maybe every 5 weeks), and my concern is that the Vibe will require more battery change outs.  Time, again, will tell.

Software Questions.  I haven’t uploaded my data to Diasend yet, but I’m excited to see what the overlap looks like for my pump, CGM, and blood sugar data.  My past experiences with Diasend have been good – I like the software – but I’m not the best at uploading data from my pump (read:  I never, ever do it because the process is annoying).  I’m hoping that future iterations of the upload process make it more plug-and-play instead of “hey, weird dongle.”

Overall, I’m excited about the Vibe.  (And even if you aren’t, let me be excited, would you please?  I’m appreciating the fact that this system has finally been approved in the US.)  I like carrying one less device while still using the CGM and pump combination that I trust and prefer (bias, bias, remember). 

I’m looking forward to sharing thoughts at the close of this trial period, and then moving forward with a Vibe of my own … even if the name of the product gives me a bit of a smirky smirk.

A Wicked Rash.

When I was younger, my pediatric endocrinologist told me that I shouldn’t be poking the syringes into the parts of my skin that didn’t hurt.  “If you don’t feel the pinch of the needle, that means you have scar tissue building up, which can lead to poor absorption of the insulin.”  She stayed on me about rotating injection sites, and even though I didn’t like rotating to new spots that hurt a little, she was right.  The more I rotated, the better my skin felt and fewer egg-bumps of scar tissue formed under my skin.

… shame on me for not following that same rotation protocol when it comes to Dexcom sensors.  I wear mine almost exclusively on my outer thigh because that’s where they feel the best, stay put the best, and are least apt to peel away before their time is up.  For several years, this worked fine because I rotated within the thigh site, making sure not to reuse an area in the same month.  But once the Dexcom adhesive rash started, I was screwed because the skin was taxed not just by the sensor itself, but by the residual rash.

Dexcom rash management has been better lately because of precautionary measures, but sometimes the rash flares up as a result of ten different factors (all ones that itch).  Last week, I was traveling for work and kept applying Opsite Flexifix tape to my Dexcom sensor as it was starting to peel away (and yes, I had a spare sensor on me but still didn’t want to pull the one that was working.  I’m a stubborn human.)  I covered that thing with tape.  And for two days, it was great.  But then it started to turn a little red underneath the tape (not the sensor adhesive, but the skin underneath the tape).  After another day, it went entirely bananas and turned bright red and started to swell.

“I can feel the heat of the infection through my jeans,” I said out loud to Chris.  At which point, I realized I was a frigging idiot for not pulling the sensor off.

Off it came, and what lurked beneath was gross.  (“It was the worst Dexcom rash … I ever seen!!”  Actual Large Marge quote.)  No way was I going to take a picture for evidence because it was horribly nasty and I’m irresponsible for letting the cost/convenience/reinstallation of the sensor supersede the integrity of my skin.  What was underneath the Toughpad was completely fine, but every bit of skin that had come into contact with the Opsite tape alone was raised, red, and borderline blistering.

It took a week for that site to heal, and only after I carefully applied Neosporin and bandaged to it.  Which brought me to that unfortunate realization:  I suck at rotating my Dexcom sensor sites.  And I need to be better about it, especially since the data is very important to me.

So I’m trying out a new spot in efforts to give my thighs some time to properly heal.  For the last week, I’ve had a sensor on my lower hip and it has worked much better than I thought it would.  It’s just below the belt time on my outer hip (see Gingerbread Man for placement accuracy because holidays) and despite the rub of pants, etc. it is staying put and not peeling up.  I have a little bit of Opsite tape on the lower edge and so far, so good.

I hope this sensor can run its seven day course without leaving a mark.  Because otherwise … itch, please.

Birdy the Kid and Jerry the Bear.

“Jerry has diabetes, like you do, mom.  So I give him food and insulin and check his blood sugar and he likes to play archery.”

A brief pause as Birdy rand her hands over Jerry’s soft bear ears.

“Mom, what’s archery?”


A photo posted by Kerri Sparling (@sixuntilme) on

[Disclosure:  Jerry was a gift from Hannah to Birdy.  We did not purchase Jerry.]

Yesterday, Hannah Chung from Sproutel kindly visited Birdzone and I to drop off a new friend for my daughter:  Jerry the Bear.  Jerry is a stuffed animal bear who has type 1 diabetes, and part of snuggling him and playing with him can also include checking his blood sugar by pressing a button on his paw.  Developed to help kids make sense of their own diabetes diagnosis, Jerry helps normalize diabetes by being a kindred spirit who also needs insulin and glucose tabs. 

He’s a stuffed animal who happens to have diabetes.  Similar to how I’m a mom who happens to have diabetes.

And that’s exactly how I want my daughter to learn about life with diabetes, with the constant, comfortable caveat that diabetes provides a to-do list, but it can be done.  And it can be fun.

Birdy knows quite a bit about diabetes, but mostly the brass tacks sort of stuff.  She likes to press the button on my lancing device (though she’s always surprised when a drop of blood comes out – “Does that hurt, Mom?”  “No, kiddo.”  “Are you sure?  Because I see blood.”), she prides herself on selecting the spot for my insulin pump infusion set, and she has a solid grasp on the meaning of the sounds ringing out from my Dexcom.

What she and I have not discussed, however, is what so many of the numbers mean.  She knows that my glucose meter gives me numbers of some kind and that I respond to them with certain sets of actions, but the numbers aren’t in context.  165 means the same at 50 means the same as 433 … nothing.  They are just numbers, or at least they were, until yesterday.  Yesterday, through her interactions with Jerry, Birdy learned what “high” and “low” look like as glucose numbers.

“Jerry is high.  See?  His number is one-seven-six.  He has to pee.  I need to give him some water and some insulin,” she said to me yesterday and she and Jerry were coloring at the kitchen table.

“Oh yeah?  So what will you do, then?”

“Mom, I already said I will give him insulin.  And some water.  I know what I’m doing.”

“Okay then,” and I turned away so she couldn’t see me smirking.

Later in the afternoon, she asked me how many glucose tabs she needed to give to Jerry if his blood sugar was low.

“How many do I usually take?” I asked her.

“You stack them up on the counter.  You take four.  Is four right, mom?”

(And this is where she teaches me something  – I do stack up the glucose tabs on the counter before I eat them.  I take out a set number and make sure I eat precisely what I take out, to help avoid over-treating and to also help protect me from forgetting to eat enough in the flurry of a hypoglycemic episode.)

“Yes, four should do it.”

“Okay.”  She “feeds” Jerry four glucose tabs and checks his blood sugar.  “Oh, I fixed it.  He’s not low anymore.”  She smiles, satisfied.  “Hey, do you know that if I smush his fur down and draw my finger through it, I can make eyebrows for Jerry?”

I want her to continue to draw eyebrows on Jerry.  Just because his little stuffed pancreas doesn’t splutter the way it should doesn’t mean he should have weak eyebrow game, yeah?

As she learns, I want her to feel safe and feel protected, empowered to ask and to help.  Resources like Jerry aren’t just for kids with diabetes, but for kids touched by diabetes on all levels.  I want my daughter to learn about my diabetes absent discussions about complications, fear, and pity.  I want her to see type 1 diabetes in the context of my actual life, which is filled with joy and chaos unrelated to my health.  She should know about this health condition because it’s part of what I do every day, and part of what she does, too, after a fashion.

Because it’s not about diabetes; it’s about life.

Diasend: Now With More CGM!?

Is it a glitch?  A misfiring Internet tube?  A mistake that they haven’t realized yet and now I’m that jerk for pointing it out?  WHEN DID THIS HAPPEN?!!

Dexcom data, now available for upload on Diasend.  I don’t know when this changed (last time I looked was over 18 months ago), but it’s working now.  Even here, deep in Rhode Island (can’t go too deep, actually, as it’s a very small state).

After digging through the box of diabetes-related cables that lives in my bathroom cupboard, I can easily upload my glucose meter (Verio Sync), insulin pump (Animas Ping – actually not the easiest upload because it requires dongle dexterity and I can barely say “dongle” without losing it, so being dextrous is extra difficult), and continuous glucose monitor (Dexcom G4).  All my data garbage, dumped into one source.

It’s not streamlined, but it’s closer, and I’ll frigging take it.

(For a list of supported devices, check out this link.  And if you knew Diasend worked with Dexcom for US accounts a long time ago, sorry for being late to the game.  Also, why didn’t you tell me?  I am now VERY EXCITED and the CAPS BUTTON is sort of STUCK.)

Follow

Get every new post delivered to your Inbox

Join other followers