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Focusing on Happy.

Clouding on the Road.

The CGM in the Cloud concept matters most to me when I’m traveling alone.  While I was in Orlando last week, my bedside table looked like this at night:

A Moto G hooked up to my Dexcom G4, sending CGM data to the cloud.

And that data being routed to my family back in Rhode Island and to my wristwatch.

A few questions I heard from people throughout the conference:

“What peace of mind does it give you that the CGM itself doesn’t?”

I slept better with this thing rigged up.  It’s a clumsy set-up (all those cables and wires and plugged-in-ports) but the ends justify the means.  Chris could see my data while I was sleeping, and his system would alert him to any wicked overnight hypos, should they occur.  That’s some good peace of mind for me when I’m a plane ride away from my support system.  While my overnights are usually unnervingly spot-on (nailing down my overnight basal has been the luckiest break ever, and I blame my in-range A1C on spending those 6+ sleeping hours in-target), low blood sugars still creep in and can cause chaos.  I liked being hooked up while I was sleeping.

“Why wear it connected throughout the day?”

It was more convenient than I thought to have the graph running on a watch.  I didn’t realize how often I go digging through my bag for my Dexcom receiver until I spent a few days not doing that.  I like the seamless flick of the wrist and the “Hey, that’s my number,” and moving one sentiment.  But, to be honest, I think I kept it hooked up during the day partly because I knew people would have questions/want to see the rig and I wanted to be able to show them. Nothing answers questions better than seeing the system “in the wild.”

“Why don’t you wear it all the time?”

What made it less convenient to keep the system “clouding” on this trip is that I haven’t purchased a data plan for the Android phone yet, and have been running it off of open wifi signals (the hotel, convention center, restaurants, etc).  That’s a definite hurdle, and since the system is most important for me to run while I’m sleeping during travel (or home while Chris is traveling), using wifi seems to work best for my needs.  It’s simple to connect/disconnect from the cloud system as I need to.  I’m also hesitant to tax the USB port on my Dexcom receiver because I don’t have a spare receiver and I also don’t want to break the device I have come to rely on.

“Do you really want your family seeing your numbers all the time?  What about your privacy?”

Really good question.  This is why I’m looking forward to the Dexcom Share application, because that app will allow me to revoke access to my data if I choose.  As it stands now, my CGM data is clouded to a site that I have shared with my husband and my mother, and if I’m hooked up to the CGM in the Cloud system, they have access to my data.  It’s not a password-protected application.  I would love to see the data protected by some kind of password system.  I appreciate the option to share the data for my safety, but not for their scrutiny.  However, when it comes to the overnights while I’m traveling, I don’t care who sees those numbers.  Their having access makes me feel less vulnerable, and I’m willing to sacrifice my data privacy for those 6+ hours.

Clouding CGM data is a work-in-progress.  Much like life with diabetes.

#wearenotwaiting

 

 

If I Were Ever …

If I were ever Gretel, finding home would be a snap
A trail of bloody test strips mark my way across a map.

If I were ever Batman and in need of a grappling hook,
The most-used lancet in my bag would do the trick to catch the crook.

If I were ever Superman, and lows my kryptonite,
A jar of cherry Glucolift would save me from my plight.

If I were ever Katniss, my District would go “Whoa,”
Because The Hunger Games have nothing on a meter reading “LOW.”

If I were ever Mario, I’d find all my 1 Ups
At the bottom of a juicebox or a kid’s juice sippy cup.

If I were ever Vader, I’d embrace the ol’ Dark Side
Because in robes like that it’s easy to make my Dexcom sensor hide.

If I were ever Walter White, I’d wear diabetic socks
So only my feet would have the ‘betes while I’d be the one who knocks.

If I were ever Pinkie Pie, there’d be lows and I’d be in it
Because that little tweaky pony can’t sit still for a hot minute.

If I were ever Legolas, and had a midnight hypo fright,
I’d wake up with food in my bed. “Crumbs have been spilled this night.”

If I were ever Aquaman, I’d still workout in ocean gyms
Because my insulin pump is waterproof, and still works while I swim.

If I were ever Dumbledore, I’d be at peace with D
Because it matters not my pancreas, but “what I grow to be.”

Tuning Back In.

Feeling crummy is a slippery slope for me, in that acknowledging it is a healthy move, but if I cater to it, I’ll get sucked down the rabbit hole of feeling overwhelmingly crummy.  I’m not even sure that makes sense when you read it, but it does to me, so there it stays.

Three years ago, I went through a pronounced emotional slump and it was not my favorite time in life.  I am not interested in going back to that place, emotionally or physically, so I’m attempting to head it off at the pass.

Things That Help Immediately:

Exercising.  Sounds so simple, because it is, but it helps.  Being outside, either walking or running, helps my brain.  It makes me feel better.  Sitting around all day long and staring at my computer trying to make the writing thing happen doesn’t do much for me, but going for a run jogs my brain (ha – weak pun but a pun all the same) back into gear.  It’s like I physically require 10,000 steps in the day before my mind decides to get creative again.  Which is fine by me.

Paying Attention to Food.  When I’m in a crappy mood, I will drink coffee all day and maybe have a protein bar, but that’s it.  And that sucks, because my body needs more diversity/nutrients/how about a hard-boiled egg, motherfucker.  Cooking hasn’t ever been something I’ve enjoyed, but I’ve always liked eating well, and looking back at a day’s worth of food that isn’t dominated by iced coffee and the random Luna bar is a plus.  The better the food, the better I feel.

Engaging in the Moment.  I have a tendency to get tangled up in the to do lists in my mind, and the things I haven’t done yet eat away at me.  To the point of anxiety, which is ridiculous, because so many of those to dos are fun and things I like, yet they’re still stressing me out?  No, no, no.  When I’m on the slippery slope towards Crumbdom, I don’t enjoy the moments I’m in, but instead I fret about the shit I haven’t accomplished yet.  Again: no, no, no.  It helps if I make the conscious decision to ease up a little, like going to the zoo with Birdy instead of staying home and freaking out.  It also helps to hug my kid, and my husband, and the cats.  They are all warm and snuggly creatures, and they make me feel good.

I’m glad there are things I can do to help feel better, to shake off the ennui.  I feel better when I’m doing something, and best when that something involves my family.  I can’t change all of the things that are weighing heavily, but I can refocus on the things that bring me joy, damn it.

You Take the Good, You Take the Bad.

… you take it all and then you have Life With Diabetes (LWD?).  (This is all sung to the tune of The Facts of Life theme song, which is the earworm to end all earworms, as far as I’m concerned.)

I can’t remember where I first read this sentiment – I think it was on a #dsma Twitter chat – but it stuck with me.  To paraphrase: someone was feeling down about their diabetes management and couldn’t find solace in the Diabetes Online Community because everything they saw online was way too upbeat and it made them feel strange/sad/isolated because they thought they might be the only ones bummed out by the daily duties.  (Only they managed to say all of that in less than 140 characters.)

I’m kind of in those kinds of moments these days.  Even though I have 100 mg/dLs that I could take pictures of and post to Instagram, I don’t feel like it.  Can I just post a picture of my Dexcom graph and spell “BLARGH” in yellow, white, and red letters?  I’m not in diabetes burnout mode (numbers-wise, my rotten old diabetes is fine and dandy), but I might be in social media burnout and sort of over the diabetes thing and am also working through quite a few non-diabetes-related moments that aren’t causing any harm but are eating up a lot of my brain space.

That sentence was a disaster.  But I don’t particularly care.

Yeah, it sounds like vagueposting but it’s not. Not intentionally, anyway.  It’s more that it’s not that interesting and I don’t feel like talking about the bulk of it.   (Do you really want to hear about how I spent four hours boxing up clothes that my daughter had outgrown?  No, you don’t.  It would make you the mayor of Yawn Town, and me the Town Crier.)

I am a little eh about diabetes these days.  My meter average is fine and my insurance company continues to cover the same shit it has always covered, but I’m so meh and blah and YAWN about the whole thing.  It’s a whole lot of work with the payoff being to do a whole lot of work again tomorrow (and the next day, and the next) and it’s giving me run-on sentences.

It feels counterproductive to post Tweets that say, “Sometimes I have nothing positive to say.”  Or “I don’t like the way that focusing on diabetes makes me feel some days.”  I like playing the positivity card because it is usually how I feel and also because it feels better than throwing down the “diabetes can go screw” card, but – being honest – the positivity thing feels better because it doesn’t feed into itself.  If someone posts a “Hey, check out my no-hitter!” graph, the kneejerk response of, “Way to go, you!!” is easy to send out.  But someone posts:


… finding the right response can be a challenge and the silence can feed into the negativity. But it’s not all happy moments. There are some downer moments mixed into the flow of things, and not acknowledging them alongside the happiness feels disingenuous.

I don’t know. Diabetes can be an overwhelming little mess at times, and more often than not this week, I’d rather throw my meter after checking my blood sugar. And not because the result itself is crap, but because I’m low on the positivity thing as of late. I need a reboot. This morning, after doing some prep work for this week’s AADE conference, I didn’t feel like posting anything so my kid and I went to the zoo. Maybe I need more of that.

There’s no succinct end to this post. It sort of trails off because I don’t know what else to say. Other than hey. And blah.

Help People with Diabetes Access Care Data; Medicare CGM Coverage.

There are advocacy tides rising this morning, and we have a chance to jump on board.  There are two opportunities to raise our voices.

The FDA has proposed new guidance for  Medical Device Data Systems (MDDS) and the diabetes community has the opportunity to comment on that guidance document.  There are more details on the StripSafely website as to what that means and why we should care.  We have until August 25th to leave our feedback.

Here’s what you can do:

Leave Your Comment on the FDA Draft Guidance.

1.  Highlight and copy the text in red below:

Support:
I am encouraged by the FDA’s draft guidance on MDDS. I support the FDA’s position that technologies that transport data, without changing values, are low risk. I believe that access to medical data should be available on multiple platforms that are accessible to both medical professionals and patients. Access to this type of data is becoming increasingly essential in healthcare, with the potential to reduce costs and improve outcomes – in fact, not having timely access to needed data poses a far greater risk. I strongly support access to this type of data and am pleased to see FDA recognizing its importance.

Diabetes:
People living with diabetes depend on data in order to minimize the chance of life-threatening complications that can arise with very little warning. I am happy to see that in his blog post Bakul Patel specifically mentions diabetes devices. I support this guidance’s decision to not mandate the PMA process for MDDS that include diabetes information.

Suggestions:
The draft guidance seems to be focused on data provided by MDDS to healthcare professionals. It should be modified to also explicitly state the value of access by patients, particularly for chronic conditions like diabetes where patients need access to their own data to manage their own care as safely as possible.

Real Time:
The draft in section V-B seems to precludes active patient monitoring. Specifically how or if this impacts diabetes is unclear. A clear definition of active monitoring should be included in the guidance. I strongly suggest that real-time access by patients to their own data *not* be defined as active patient monitoring. I strongly support including in this guidance more open access to information from continuous blood glucose monitoring for patients with diabetes. The appropriate risk of device performance is regulated through the device PMA, and shifting CGM data to secondary screens does not in any way increase risk. From a patient perspective, secondary screens significantly decrease risk by making information more readily accessible to the patient. This is particularly relevant for those of us who may be unaware of early stages of hypoglycemia.

ER and Hospitalizations:
Geller et al estimate in JAMA (JAMA Intern Med. 2014;174(5):678-686. doi:10.1001/jamainternmed.2014.136.) that almost one hundred thousand Americans a year are treated in the Emergency Room for insulin related hypoglycemia and that about one third of those are admitted. Timely access to real time sensing data may help prevent many of these ER visits. This suggest real opportunity to mitigate risk through secondary device display of CGM information.

Multiple Data Sources:
Existing regulations state that ‘Accessories to classified devices take on the same classification as the “parent” device. An accessory such as software that accepts input from multiple devices usually takes on the classification of the “parent” device with the highest risk, i.e., class.’ (http://www.fda.gov/MedicalDevices/DeviceRegulationandGuidance/HowtoMarketYourDevice/PremarketSubmissions/PremarketNotification510k/ucm142651.htm ) People managing diabetes often use multiple devices to provide the data needed to follow care instructions. Bringing that data into a single application would improve patient understanding. For example finger stick measured blood sugar, CGM trends, amount of insulin infused, and the time of each are all information that patients juggle. A dashboard displaying all relevant diabetes data would improve safety and reduce risk, compared to forcing the patient to consult multiple devices and displays.

FDA’s Dr. Courtney Lias offered promising comments on diabetes and mobile devices at the Keystone 2014, “Practical Ways to Achieve Targets in Diabetes Care” sessions. Closer Look reports that Dr Lias, in comments on artificial pancreas, spoke of a strong FDA interest in consolidating devices through mobile technology to facilitate better diabetes care. She reportedly spoke of “component artificial pancreas system,” where patients could choose component devices of a system. I fully support the vision Dr Lias shared. This proposed MDDS guidance can encourage logical, safe and incremental steps towards that future by opening multiple diabetes devices to display on a mobile devices.

Conclusion:
Diabetes patients implement the individualized care programs created by our doctors based on real-time data from multiple FDA-approved medical devices. Easing the accessibility of data from those devices improves our ability to follow our care team’s instructions. I support the FDA’s adoption of MDDS guidance that incorporates a nuanced appreciation of the low risk and incredible value in using MDDS to transmit and display diabetes data.

2.  Click here  and paste the text you copied into the comment box.
3.  Fill out your information.  (Note:  You’re commenting as an individual so be sure to uncheck the box that says: “I am submitting on behalf of a third party.”)
4.  Click the Category “Individual Consumer.”
5.  Click continue.
6.  Review, check the confirmation box, and submit your comments.

Sign the “Tell Medicare to Cover Continuous Glucose Monitors for People with Diabetes” petition from the JDRF. 

People with diabetes live longer, healthier lives these days.  (Celebrate!)  As a result, so many of us have the privilege of aging well.  Bottom line?  We’re getting older.  And when we enter the Medicare age bracket, continuous glucose monitors will not be covered by our insurance.  But we have a chance to change things.  Here’s something you can do in less than 1 minute that will make a difference:

  1. Click here for the petition.
  2. Sign it.
  3. Share it.
  4. Pat yourself on the back and carry on.

Oh, this is a real thing with an actual patent pending. (source)

Thank you for giving these issues your attention.  The community is lucky to have you.  And you.  But especially you.

 

Giving Diabetes the Finger: iHealth Winners!

(Technically, the post title should be “what finger do you use for diabetes?” but it doesn’t have the same zing! to it.)

Earlier this week, I posted about the iHealth meter giveaway and asked people to answer the question, “Which finger is your go-to one for blood glucose checks?

Give the middle finger to diabetes HA HA HA HA HA HA jokes are funnyWe only had ten options to choose from, so the answers unfortunately couldn’t get too weird.  (Unless you’re old school and remember testing earlobes.  I learned that at diabetes camp.)  The finger-most-favored, by far, was the ring finger, with the middle finger as a distant second place.  Pinkies had their own fan base, and thumbs were the only fingers that received a “Oh, heavens no!  Never my thumb!” sort of response.  (As a community, we are somewhat ambivalent about our index fingers.  Except maybe to point and say, “Can you grab me those glucose tabs?” or “Yes, I can eat THAT.”)

When I examined my hands, it became clear that I was a ring finger/middle finger frequent tester, like many of you guys.  The middle finger just seems appropriate, you know?

As Hilary so eloquently stated:  “Right hand middle finger. It’s a big *@! to TD1″

The winners of the iHealth glucometer giveaway are Binay, Danielle, and Mark B!  Congrats, you guys.  I’ve sent you an email to coordinate mailing out your stuff.

Thank you for entering!

 

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