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Archive for August, 2013

5,000 Names Needed.

There’s a petition circulating to add diabetes as a disease topic to be discussed over the next five years.  Diabetes, despite the number of people touched by it, isn’t on the list.

Yet. 

If we can gain 5,000 signatures on this petition, we have a better chance of adding diabetes to the discussion docket, helping improve the lives of those we love.  It takes about fifteen seconds to sign the petition.  Do you have fifteen seconds to spare to help raise the voice of the diabetes community?

Yeah you do.

“The Food and Drug Administration has begun to hold a series of patient meetings to gain a better understanding of specific diseases. Over the next five years, the agency plans to conduct at least 20 such meetings on conditions ranging from Chronic Fatigue Syndrome to Narcolepsy to Irritable Bowel Syndrome.

But not diabetes.

That is unacceptable.

Four “slots” remain open (view the current list), and we want the FDA to add diabetes to its meeting docket for 2013.

According to the American Diabetes Association, nearly 26 million Americans have either type 1 or type 2 diabetes,and an additional 79 million have prediabetes. Those numbers are also increasing each year – the CDC estimates that if current trends continue, one in three US adults will have diabetes by 2050.

No one disputes that diabetes is one of America’s – and the world’s – most serious health epidemics. In 2012, more than one in five total US healthcare dollars was spent on diabetes, totaling $245 billion, and the government covered 62% of those costs, meaning everyone is paying for this epidemic. Despite growing needs, research dollars have also leveled off.

New therapies need to be investigated, tested, and brought to market, and as part of that process, the FDA must understand the daily challenges that patients face.

We need to tell our story to the FDA: about the need for accurate strips, more physiologic insulin, a broader range of drugs, and the Artificial Pancreas.

Our voices need to be heard.

Please sign this petition to urge the FDA to sponsor a patient meeting focused on diabetes – and the sooner, the better.

Thank you very much.”

Pile o’ Diabetes.

Borked cannula?  Compromised insulin?  Miscalculated food?  Wonky meter result?  CGM on the fritz?

Diabetes?!

My blood sugars been absolute crap for the last 48 hours, with more yellow on my Dexcom graph (indicated blood sugars above my target range) than I’d care to admit.  It makes me wonder if someone did a Folger’s switch with my insulin and a bottle of saline.  (“Let’s see if she notices.”)

I noticed.

Sometimes the variables of diabetes feel like they’re in a big pile, waiting to be sorted through and I’m more inclined to throw the whole mess out the window.

Only in my mental pictures, I’m wearing pants.

Shine On, You Crazy Pedometer.

I’ve spent a few weeks playing with the Shine fitness tracker from Misfit Wearables.  (Hence the title, which I’ve been itching to use since receiving the device.)

As with any pedometer/fitness tracker/new thing, I’m paying attention to this device and becoming immersed in the data.  I use it as intended; I wear it all day long and sync it to my iPhone when required.  And it’s not hard to integrate, as I’m still in the wicked techno-joy portion of using this fitness tracker.

Doesn’t hurt that it’s slick, design-wise.

Shine vs. a quarter

The Shine is about the size of a quarter, and looks like a spaceship.  Only more Batteries Not Included than Wall-E, which I’m fine with.  Already suited up with an insulin pump and a continuous glucose monitor, I’m grateful for the small, discreet design of this fitness tracker.  Especially since I view exercise as necessary in my diabetes playbook as insulin.

Right out of the box … well, I have to admit:  I had trouble getting this thing out of the box.  Literally.  The package design is streamlined and reminiscent of all-things Apple, and admittedly took me ten minutes to figure out how to pop the Shine out of the packaging.  (I had a photo of the box, etc. but it ended up lost down an elevator shaft along with my OCP [original cell phone] two weeks ago.  Don’t ask.)  But once the Shine was released from its factory packaging, all I needed to do was download the Shine application, put the battery in the fitness tracker, and sync that sucker up with my phone.

Pros?  Once I had the battery in, it took me about two minutes to set up my profile and assign fitness goals.  The Shine goal system is based on points, and I opted for 1000 points to start, which worked out to about 1.5 hours of brisk walking, according to the app.  It was encouraging, and informative, to see the patterns of my day.  Having worn the Shine for the better part of the last three weeks, I’ve seen that I’m lazy as eff in the morning, but by 1 pm, I’m already logging points and usually have my goal met by early evening.

I like seeing the progress build throughout the day, either through syncing-and-reviewing on the app, or tapping the device and watching it light up, clockwise, signalling how close you are to completing your goal.  That ‘around the world’ light show is very satisfying, once you’ve hit your goal for the day.

The detailed reports for each day are seen from the application, and while they aren’t as detailed as I’d like (I use RunKeeper to track miles, pace, etc, so I’m accustomed to that level of exercise detail, and I prefer it), it’s useful.  If I hit goal for a few days in a row, I get the “on fire” icon, showing that I’m on a good streak.  The device also tracks sleep patterns (see photo below).

And lastly, it can go through the washing machine.  Or you can sweat all over it.  Or wash your hands without fear of water-logging it.  Nice feature, considering what circumstances fitness trackers are put through (running, swimming, bathing toddlers, etc.)

Cons?  The biggest con is that the night I put the device on, I lost it about an hour later.  I used the magnet clip, at first, and it somehow came loose while I was giving my daughter a bath.  That sucked.  It’s so small and so slick that it hid from me, underneath the bathroom cabinet, for a long time before I found it.  I wish it had some kind of tracker built into it so that I could use my phone as a honing device.

I mentioned that the level of detail leaves much to be desired, for me, and I’m hoping the interface upgrades will eventually reach the RunKeeper level.  Also, there’s no way to track weight training, and no open data field to add notes, which would be really useful.  I’d love to be able to add notes about blood sugars, etc. to help make this useful in tandem with uploading my meter, etc.

Another issue is cost.  While this device was sent to me for review, at no cost to me, it’s not cheap.  (Which is why, when I lost it for a few days, I was spazzing, feeling like I lost $120.)  It’s a durable little sucker, but isn’t easily kept-track-of without accessories like the magnetic clip or the sport band.  You can splurge even further and go for the necklace option, or durable leather band, but you’re dipping into the $80 range there.  Overall, the design and functionality seems worth the cost, but it’s not a purchase I’d make without thinking through.

And the sleep tracker function?  I’m iffy on these sorts of things.  How does it know I only had two hours of deep sleep?  And why didn’t it notice I woke up to use the bathroom?  I have yet to find a sleep tracker app or device that seems to work for me, especially on days when they claim that I should feel rested when I feel more like I’ve been hit by a truck.  Tricky tracking there.

Overall, I think the design of this device is excellent, and integration is easy (that is, providing I don’t lose it again).  With time, I hope the interface evolves to customize more details.  So far, it’s been fun to use.  What I really want to do is stick this pedometer – or any pedometer, for that matter – to my three year old and confirm that she logs over 20,000 steps per day.  I’m sure she’d kick the crap out of the goal system.

[Disclosure:  Misfit Wearables sent the device to me to keep and review.  I was not asked to blog about it, and my opinions are all mine. ALL MIIIIIIIINE.]

“Popovahs!”

For the past five years or so, Chris and I have been going up to Bar Harbor, Maine to spend a few days walking around in the woods.  (Let me clarify.  “Walking around in the woods” means going on hikes, spending hours on end outside, and then retiring to the comfort of a bed & breakfast because I do not pee or sleep happily in the woods.)  Spending time offline and with the family was long overdue.

This year was particularly special, because we introduced our littlest Bird to some of our favorite spots in Maine.  Anti-stroller and anti-nap since she was about two years old, Birdy was ready to take on the three mile hike around Jordan Pond, chattering the whole way about the popovers she’d be able to eat when we returned to the tea house.

Allowed to use a butter knife (for the first time – big moment!) to slather butter and strawberry jam onto the fresh-from-the-oven treat, Birdy was excited to take a bite.

“Mawm!  Popovahs!!”

We introduced her to my favorite breakfast place of all time:  2 Cats.

And when she wanted a different view of the world, we lifted her up and let her see things from way up high (allowing her a new vantage point and also the opportunity to mess with her dad’s hair).


“Have I been here before?  In mom’s belly?”

“Yes, you were here once.  And now you’re here, on the outside.”

“Yeah.  Because I got so big that I had to come out of your belly and have popovahs.”

“Exactly.”

Diabetes Art Day: Strip Safely Edition.

A long weekend’s worth of test strips for the Diabetes Art Day:  Strip Safely edition.

Managing a disease and making medication decisions based on data that’s built on shifting sand is scary.

Sort-Of Guest Post: What Do You Wish Health Care Professionals Knew?

[Hey guys.  This post was not written by me, but was instead written on my behalf. It's more streamlined and professional, and I didn't want to toss it out there without some kind of explanation or positioning.  Take a look, read through, and please do participate if you're inclined.  Also, please share this post if you'd like to help highlight this effort.  It's a very cool study aiming to take a look at how HCPs can learn from communities like the DOC, and I'm looking forward to seeing the results.)  

A researcher in a medical school in Quebec City, Canada (who is type 1 herself) is doing a study about how health care professionals might learn from online communities of people living with conditions like diabetes.

I have been collaborating with her on this study since November 2012. Other people in the DOC are involved, too. I encourage you to participate in the study and to spread the invitation to be a part of this.

This study is open to anyone who has personal experience with diabetes. You may have type 1, type 2, LADA, gestational diabetes, or another type. You might have diabetes yourself or you might be a family member or friend of someone with diabetes.

Tell us what you wish that health care professionals (doctors, nurses, dietitians, physiotherapists, counselors, you name it) understood better about diabetes.

If you want to participate, sometime in the next two weeks, put up a blog post or post a video, and then post a link to it here: click this link for the study.  Tell us what you wish health care professionals knew!

After the two weeks are over, we will ask you to vote to help us prioritize which ones we should show to health care professionals first.

If you have questions about the study, contact Dr. Holly Witteman, PhD, the lead researcher on the study, or Dr. Selma Chipenda-Dansokho, PhD, the research professional running the study.

More Willpower Than Carbs.

It’s been a week of strange and unusually clingy lows, and they are often to blame for a rough day of blood sugars, as it’s so easy for me to over-treat a low, causing me to bounce  up too high, which makes me aggressively correct with a bolus (rage bolus!), which sometimes makes me low again.  Vicious cycle involving too much insulin and way too much candy corn (hypothetically speaking, of course – it was on sale!!).  Today, I’m looking back at some words of wisdom from my endocrinologist about over-treating nasty lows.

*   *   *

“It takes more willpower than carbs to properly correct a low blood sugar.”

This goes through my head every time my blood sugar is below 65 mg/dL.  I talked about lows with my endocrinologist a few weeks ago, and how when I’m excessively low (the ones that tangle my tongue in my mouth and leave cotton balls in the place where my brain should be), it’s very hard to measure out fifteen grams of carbs, then eat, and then sit patiently and wait for my blood sugar to rise.

“Usually, I measure out fifteen hundred grams of carbs, usually in the form of an entire bottle of grape juice, and then consume the whole lot in a matter of seconds.  Then I end up haphazardly bolusing to cover the extra carbs.  Usually, I end up much higher than I was aiming for, mostly because I’m in a freaking panic and treating the low as fast and desperately as I can.”

She and I talked about how panicky lows often lead to over-treating, which leads to highs, which leads to rage bolusing, which leads back to panicky lows.

“Fun vicious cycle, that is,” I said.  “I do notice that the more stable my blood sugars are, the more stable they remain.  It’s once the bounce starts that it becomes gross. My Dexcom graphs start looking like giant letter Ms.”

“Not over-treating a low is very important, but I know it’s a tough thing to avoid.  That panic drives you to eat until you don’t feel low anymore, which can take up to twenty minutes.”

“So I need to distract myself while low?”  (Like I’m not already distracted enough at a blood sugar of 40 mg/dL.)

“Whatever you can do to treat the low without overdoing it, yes.  It can help stop that vicious cycle.”

Lows aren’t as prevalent now as they were a few months ago, but they do hit every once in a while.  (As irony would have it, I’m writing this blog post while low.  But I only had three small sips of juice.  And now I’m waiting patiently.  PATIENTLY.  SEE HOW PATIENT I AM?!)  I’m trying to be patient while low, and waiting out the panic until blood sugar serenity sets back in.  I thought about crocheting while low, but decided that would be an epic exercise in dropped stitches.  Thought about jumping on Twitter while low to pass the time, but that would end up looking too much like drunk Tweeting. And I can’t whistle, or else I would fashion up a low blood sugar tune to pass the time.

So I’ll try to sit.  And wait.  And pretend that my brain and my body aren’t freaking out while I wait for the glucose to hit my blood stream, the same mantra running through my head while the adrenaline runs amuck in my body:  “More willpower than carbs.  More willpower than carbs.”

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