Skip to content

Posts from the ‘Robot Life’ Category

Whoa! Woe.

First this:

Then this:

So whoa!  Much woe.

The Dexcom / Mac Dance.

Sharing, because that’s what friends do.

Brian Bosh, living with type 1 diabetes and also apparently a very clever guy, found a workaround for uploading Dexcom G4 data to a Mac computer. Yes, you read that correctly.

“I created Chromadex because I was trying #DIYPS but hated carrying around a second phone. I figured I was close enough to a computer enough of the time that I could run an uploader on there and it would work well enough. There already is an uploader for Windows and Android, but no way to do it on the Mac. (Or Linux for that matter.) Once the uploader was built, though, I thought it really ought to do some of the same things Dexcom Studio did, since that’s not available on Mac either: If I had the data, I might as well offer their reports too. At this point it will upload to #DIYPS, NightScout and run three reports. It still takes a little bit of wrenching to get it to upload and I’d like to make that easier. Had a few people ask if I could make it work with MMOL. I’d like to get more reports working.”

I haven’t downloaded my data yet via this application, but others have:

If you want to try it for yourself, visit the Chrome web store and download Chromadex for free. And if you like how it works, please thank Brian.

#wearenotwaiting

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

 

 

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!

 

Go Bionic: Ed Damiano, Clara Barton Camp, and How the Bionic Pancreas “Really Works.”

During my visit to Clara Barton Camp yesterday, I heard the same sentiment over and over again from the kids wearing the bionic pancreas:  “It works.”

“It was weird not to touch the buttons when it beeped,” Addy said, an 11 year old camper at Clara Barton Camp who has been living with type 1 diabetes since she was two.  “I’d reach down to look at it or touch it when it beeped but then I’d have to remember not to touch anything.”

“A big change from needing to check every beep and look at the devices all the time, right?  So when did you feel like you were used to wearing it?”  I asked her.

“Yesterday.  Yesterday, it beeped and I didn’t reach down.  I just said, ‘Whatever.’”

“You trusted it?”

“Yes.  I trusted it.  It works.  If you check it, it’s perfect.  My blood sugars are perfect.”

Addy has been wearing the bionic pancreas since Sunday, part of  the Bionic Pancreas study taking place at The Barton Center (and also the Joslin Camp) this summer.  She’s one of thirteen campers at Barton taking part in the study, ages ranging from six to 11 years old, six girls suited up with the bionic pancreas last week and seven this week.  “My blood sugars have been perfect – I haven’t been low at all and I haven’t been high, except for one 203 mg/dL.”

If a week without blood sugar excursions sounds like an impossible dream, take heart.  Take pancreas, too, because this technology actually exists and is currently attached to seven girls in Massachusetts.  And not “seven girls stuck in a hospital bed under strict activity guidelines,” but seven girls who are running amuck at camp, swimming, dancing, singing in the dining hall, and burping at picnic tables outside of the cabins.  The bionic pancreas has been highlighted in the New York Times, NPR, chronicled extensively over at diaTribe, and has also been the subject of a frequently-downloaded-and-rabidly-shared New England Journal of Medicine article.

The system has a few moving parts:  two t:slim insulin pumps with the Bluetooth switched on for communicating with the phone (one filled with insulin and one filled with glucagon), a Dexcom CGM, and an iPhone.  An in-depth look at how the technology works together can be found in the NEJM paper, but the basic gist is that the Dexcom monitors blood sugars and sends that data to the iPhone, which is running an algorithm that doses insulin, glucagon, or refrains from dosing anything at all.  Lows can be corrected by glucagon, highs by insulin.  Meals aren’t carb counted, but instead the algorithm “learns” what a big meal, small meal, or snack is based on minimal input from the PWD.

“It’s beautiful,” I said to Ed Damiano, one of the principal investigators on the project, after seeing some of the blood sugar outcomes from previous studies.

“It’s still a little clunky,” he replied.  “I want to see one device, one infusion set.  But this?  It works.”

Currently, the camp study at Barton has girls on the full bionic pancreas system for five days, and then five days on their own insulin pump, but with the CGM blinded to the user and still uploading to the cloud.  Bionic pancreas campers are required to check their blood sugar at least seven times per day.  Due to camp safety protocols, the study team can’t let low blood sugars “ride” and assume that the bionic pancreas will step in with glucagon in time, so success on some levels isn’t judged by minimal time below 70 mg/dL but instead the reliable metric becomes how many times did the study team need to intervene for a low blood sugar.

This summer, there are a few new features on the bionic pancreas.  One is “microburst glucagon,” which is most useful for when people are disconnecting the system for swimming or similar, in efforts to provide a safety net for low blood sugars while doing that kind of activity.  There is also an option for temporary targets, which allows people to adjust their target thresholds.  “Normally, we aim for 100 mg/dL, but if we can adjust the threshold and show a change in the A1C based on that adjustment, we’re able to titrate A1C levels using the bionic pancreas,” said Ed.

Some challenges still exist with the system.  The bulky devices, for one, are their own challenge, but as the project moves forward, the diabetes community rallies to support current needs.  “Donna from Tallygear came up and made these ‘GO BIONIC!” belts in a matter of 48 hours.” Ed said, smiling.  “We didn’t ask her to do that.  She offered, and we are so grateful because the kids love them.”

The kids sing the praises of this device.  Ally, diagnosed in 2009 at the age of five, wore the bionic pancreas the week before Addy suited up. “It really works. When I saw the video online, I thought it was made up. I thought the girl in the video was lucky, and that her numbers were just perfect that day. And then I wore it [the bionic pancreas] and I was like, ‘Wait … it really does work!’”

Addy chimed in, her bionic pancreas belt visible over her shirt:  “Ally wore this last week and now I’m wearing it.  She said to me, ‘If you don’t want to wear it, can I wear it for you?’”

Ally nodded.  “I did say that.”

“Does the weight of the device bug you?”  I asked Ally.

“No.  It’s a little heavier but I don’t care.  Even with all the pumps on and the phone, I could still do a back-handspring in the grass.”

The study at Barton concludes this week and then moves over to the nearby boys’ camp.  But after this study finishes, there is still work to be done.  The amazing bionic pancreas team has come so far and the 2016 pivotal study is in sight, but needs community support to get there.

This is where the Bionic Challenge comes in.

According to the website call-to-action:  “The Bionic Challenge asks each family to raise $5,000 in 60 days (by September 1, 2014). If each family in attendance here today can turn to their friends and relatives and obtain 50 $100 donations (that means finding only about one donation per day for the next seven weeks), we can resume our development effort in September and keep on schedule for our final pivotal study in 2016. If we cannot resume in September, it could jeopardize our ability to secure a recently announced time-limited $20MM NIH funding opportunity, which is due in about nine months (April 15, 2015) and could support all of the clinical costs of our pivotal study.”

tl;dr:  the project needs the support of the diabetes community because, without it, the goal of a 2016 pivotal study may be delayed. If you can donate, please do. If you can’t, please consider sharing this information with someone who can. The more people who know how to help, the better.

After being promised a “cure in five years” back in 1986, the idea of the bionic pancreas being delayed because of money makes me feel insane. I could understand a delay if the technology wasn’t up to snuff, but to delay due to funding is unreasonable.  I saw kids playing outside yesterday afternoon, running around and laughing and having fun and the burden of diabetes seemed only as heavy as the belt around their waist, which with time and technology becomes smaller and lighter.

“I look at diabetes as management and maintenance,” said Ed, as we sat in the Barton Center bionic pancreas command center, where the study team was hard at work monitoring the campers blood sugars from the cloud.  “The maintenance part is the changing of an infusion set, the changing of a sensor, the checking of blood sugars.  The management part, to me, is the emotional part of diabetes.  The fact that you are so often told that you’re ‘wrong’ because you’re trying to thread the needle.  This device doesn’t take away from the maintenance part because it still requires that you wear something, do something, change something.  But it does make the management part smaller.  So much smaller.”

I don’t know if a biological cure will be seen in my lifetime.  I was diagnosed with type 1 diabetes in 1986 and have been living well, but not without frustration, as a host to this disease for almost 28 years.  My perception of what a “cure” is has changed as I’ve grown older, and my hope for something that takes this disease away fades with time.  But seeing the bionic pancreas at work, around the waists of children not much older than my own, and watching the worries of diabetes lifted from their minds and the minds of their families, I feel renewed hope.  More hope than I’ve felt in a long, long time because this is real.  I held it in my hand.  It filled me back up.

Because it works.

You can follow the progress of the bionic pancreas on the Bionic Pancreas website and “like” their Facebook page for more updates.  Links to articles featuring the bionic pancreas are here , and this video shows you how, and why, the bionic pancreas works:

Unexpected Advocacy.

The last thing I wanted to do was take my cover-up off.

Chris and Birdy (and our friends and their daughter) were at a water park in New Hampshire where kids can run and play in safe-for-littles sprinklers, pools, and water slides, and as the adults, we were tasked with guarding the perimeter.  Pacing back and forth, the four of us kept watch on our kids, ready to jump in at any moment to help them climb a slide, pick themselves up if they fell, or slather on more sunscreen.

I didn’t care who saw my body.  Not really, anyway.  I’ve run miles and given birth (not simultaneously), so I know there are strengths and weaknesses to my frame, but it wasn’t the shape and curve of my body that made me want to stay covered up at the water park.

I didn’t want people staring at the diabetes devices stuck to my body.

“Oh, suck it up.  No one is looking at you.”

Of course they aren’t.  They don’t mean to.  But when someone walks by wearing a bathing suit with a few curious looking devices hanging off it, it’s hard not to notice.  My standard beachwear is a bathing suit with my pump clipped to the hip, the tubing snaked out to wherever the infusion set happens to be living, and my Dexcom sensor taking up more real estate elsewhere.  These items aren’t jarring, and people don’t snicker, but they do look twice because cyborgs aren’t the norm.

Most of the time I don’t think twice about who might look, but on this particular day, I felt self-conscious.  Why?  Who knows.  Who cares.  I just felt eh that day.

But motherhood dictated that my self-consciousness take a backseat to being part of Birdy’s waterpark experiences, so I sucked it up and removed my cover-up.  My insulin pump infusion set was stuck to the back of my right arm, the tubing snaking down and tucked into my bathing suit, where the pump was clipped to the back.  My Dexcom sensor was mounted on my right thigh.  Even though these devices are reasonably discreet, I felt like I had two giant toasters stuck to my body.


Birdy needed help climbing to a higher platform in the play area and I helped her do that, thankful that my pump was waterproof.  We ended up in the sprinkler pad for a while and I was thankful that the tape around my Dexcom sensor was strong enough to withstand the water.  After a few minutes, I got over the whole “blargh – I don’t want to wear giant toasters” feeling and got on with things.

“Excuse me.  Is that an insulin pump?”  All casual, the question came from behind me, where one of the park lifeguards was standing.  His arms were crossed over his chest as he confidently watched the pool, but his question was quiet.

“Yeah, it is.”  I wasn’t in the mood to have a full chat about diabetes, but I didn’t want to make him feel awkward for asking.

“You like it?”

“I like it better than taking injections.  I was diagnosed when I was a kid, so the pump is a nice change of pace from the syringes.”

“I bet.”  He paused.  “I was diagnosed last August and I’ve been thinking about a pump.  But I hadn’t ever seen one before.  Is that it?”  He pointed to the back of my arm.

“Kind of.  That’s where the insulin goes in, but the pump is this silver thing back here,” I pointed to the back of my bathing suit, where my pump was clipped.  “This is the actual pump.  It’s waterproof.”  A kid ran by, arms flailing and sending splashes of water all over the both of us.

“Good thing,” he said.

“For real.”  Birdy ran by to give me a high-five and then took off playing again.

“Your kid?”

“Yep.”

“How long have you had diabetes?”

“Twenty-seven years.”

He gave me a nod.  “Thanks for not making it seem like it sucks.  Enjoy your day,” and he moved towards a group of kids that were playing a little roughly.  I stayed and continued to watch my daughter play, very aware of my diabetes devices that, for the first time ever, didn’t seem quite noticeable enough.

 

(Also, today has been unofficially designated as a “day to check in” (hat tip to Chris Snider) with the DOC blogs that we’re reading.  I read a lot of diabetes blogs, but I don’t often comment because I usually want to say something meaningful, instead of “I like your post.”  (But I do like your post!)  But instead of finding that meaningful comment, I usually roll on and forget to return to comment.  NOT TODAY!  Today I’m commenting on every blog I read, because that’s the name of the game.  I love this community, and today I’ll show that through comments.  So please – if you’re here, say hello!  And thanks. xo)

Miss Idaho: #ShowMeYourPump!

Have you heard?  Sierra Sandison just earned the crown as Miss Idaho, and she accomplished her goal with an insulin pump clipped to her hip.  Yes, that’s right – another Miss America contender has hit the stage with diabetes front-and-center.  And since winning Miss Idaho barely a week ago, Sierra has already brought type 1 diabetes to the national stage via stories on NPR, People Magazine, Buzzfeed and a host of other media outlets.

Diagnosed with type 1 diabetes just after she turned 18, Sierra is helping empower people with diabetes to wear their devices proudly with the #showmeyourpump hashtag as her rallying cry.  Today, Sierra is sharing some some of her diabetes story here on SUM.

Kerri:  Sierra, you were just crowned Miss Idaho and are off to compete for the Miss America crown this September.  Congratulations!  And you’re also living with type 1 diabetes!  Can you share a little bit about your diagnosis story?

Sierra:  My dad is a family practice physician, but I was diagnosed shortly after my 18th birthday and had recently moved out of my parents’ house, so we didn’t catch it as quickly as we could have if my dad had been able to see the symptoms. Fortunately, I was never hospitalized!

I was extremely thirsty and hungry! It finally got to a point where it was ridiculously inconvenient. One day, I was snowboarding, and had to buy water bottles every time I got done with a run. I would drink them on the way up the chairlift, and then have to “relieve” myself at the top, and then again when I got to the bottom. Then, the cycle would repeat. On the chairlift, I called my dad and said, “Dad, I have a problem. I am an aquaholic. Can I go to rehab for a water addiction?” He immediately knew what the real problem was, since my late uncle and grandpa had diabetes, and my second cousin does as well.

However, when it was confirmed, and 550 [mg/dL] popped up on the glucometer, I bawled and bawled and bawled. A diabetes educator came and spoke to my class the next day, because I was terrified that they would make comments along the lines of “it’s your fault”, “maybe if you ate healthier…”, etc.

Kerri:  I saw on your Facebook profile that you were proudly rocking your t:slim insulin pump onstage at Miss Idaho – were you nervous about showing the judges your diabetes device?  What made you decide to go for it and share openly?

Sierra:  I’m going to be completely honest, it still scares me sometimes to wear my insulin pump. Getting the confidence to wear it on stage has been a journey.

When I was first diagnosed, I hated diabetes so much. I just tried to ignore it, and let my blood sugar be high until I felt to sick to deal with it. It was awful. In July, my friend asked me to compete in our local pageant, Miss Magic Valley. I met the director for lunch, who told me everything that was involved. When our food arrived, I pulled out my insulin pen, and she immediately told me about Nicole Johnson, Miss America 1999.

Nicole wore her insulin pump on the Miss America stage while she competed for her title. Knowing that has had such a huge impact on my confidence. As a young woman, we often long to look like the girls in the media: movie stars, super models, cover girls, etc. The media gives us unrealistic expectations, and most of us will never measure up. We soon begin to think that, because we are different from those girls we see, that we are somehow worth less, or less beautiful than them.

What a disgusting lie! Unfortunately, I don’t think we can ever completely escape the influence the media has on us. I hope that someday the media can be filled with a variety of beauty! That is one of the reasons I love the Miss America Organization:  Nicole Johnson rocking her insulin pump in 1999; Alexis Wineman, the first woman with autism to compete at Miss America, in 2012; Heather Whitestone, the first deaf Miss America in 1995; Nicole Kelley, Miss Iowa 2013, was born with one arm.  And countless more women who have inspired the country while competing at Miss America!

So, eventually, after thinking about, researching, and following Nicole Johnson, I got the guts to get a pump. However, it took me another year to compete with it.

This year at Miss Idaho, I was honestly terrified. I was nervous the judges wouldn’t ask me about it in my interview. I was nervous that the audience would be confused. I was scared the other contestants would think I was using it to try and get pity from the judges.

I walked into my interview, and the very first question was about diabetes. It was a huge relief. “I can do this,” I thought, until I walked out of the dressing room, and was immediately asked about the pump.  The person who asked me was Miss Idaho’s Outstanding Preteen, McCall Salinas. While my heart sunk when she first pointed it out, that quickly changed when she explained she was a diabetic, but was too scared to get a pump because of what people would think.

That was it. I was doing it. I was going to wear the pump for McCall, no matter what people said or thought, and no matter how badly it may affect my score. I walked on stage, and the rest is history.

Kerri:  Since the competition, you’ve also encouraged others to wear their devices proudly, with the #showmeyourpump hashtag/mantra.  What’s the response been like?

Sierra:  It has been so overwhelmingly AMAZING! You have to understand, I am a completely normal person. My sisters and I are getting embarrassingly excited about all my new followers and likes. It is so crazy how many people were so inspired by me doing such a simple thing! I was prepared for a lot of negative backlash for competing in a beauty pageant with a swimsuit competition involved, but as far as I know, most everyone has been positive!

The response to my #showmeyourpump campaign has been crazy as well! I can’t keep up—it is unreal! We have had responses from diabetics all over the country, and from all over the world. I have also heard from kids with hearing aids, feeding tubes, etc. How awesome that it is having an impact even beyond the DOC! Keep the pictures coming(:

Kerri:  Is diabetes advocacy part of your competition platform?  Can you tell me about how you plan to use your voice to improve diabetes awareness?

Sierra:  It was my original platform, but before I was Miss Idaho, I didn’t have much of a voice. My platform now is actually a program my sister and I started for kids with developmental disabilities. We put on sports camps for them! The program is called Possibilities for Disabilities. Originally, we just wanted to give them the chance to participate in the fun extracurricular activities their peers do, because we think that sports and music are important to adolescents in finding their identity, discovering their passions, and building confidence. What we soon realized is that the program was doing so much more! We have students at the high school volunteer as “student coaches” and work with the campers. By placing the kids with disabilities in a fun, empowering, positive environment with their peers, it breaks down barriers and helps the kids form friendships with their peers. This has transformed their lives more than anything else! The entire culture of the high school we work with has changed towards the kids in special ed. They have formed identities beyond their disabilities, and are accepted more than they ever would be at another school. I am so excited to have the opportunity to spread Possibilities across the state, and even across the nation, as Miss Idaho!

With my diabetes, the message I try to get across to everyone I come in contact with is this: whatever obstacle they are facing in their life, they can not only overcome it, but use it to become a stronger person, as well as impact the lives of others. There is one girl in my camp who is a high functioning autistic, and has decided to put on a Possibilities camp for her senior project next year. I am so excited. She is doing exactly what I hope I can inspire others to do: take their challenges and use them to serve others.

I love Possibilities for Disabilities, but now that I have a more powerful voice as a diabetic, I am ECSTATIC to use it! Who said I couldn’t have two platforms?

Kerri:  There’s a lot of discussion in the diabetes online community about diabetes stigma.  Have you ever been discriminated against in terms of diabetes?  How did you handle it?

Sierra:  Before my family and close friends were educated, there were some hurtful comments about how my diabetes was my fault, because of the confusion between type 1 and type 2. Aside from that, I cannot recall any other negative experiences, aside from confused and slightly cold questions about my insulin pump. I have been very fortunate!

Kerri:  How can the diabetes community help support you as you make your moves for Miss America?

Sierra:  In a couple weeks, all the Miss America contestants will be publishing their “People’s Choice” videos. America can vote one contestant into the top 15! Only the top 15 get to compete in the televised portion of the pageant. It would mean the world to me if the diabetic community would help me win People’s Choice to guarantee that I have the opportunity to compete with my pump on national television!

Kerri:  Sounds like a plan, Sierra.  Is there anything else you’d like to share?

Sierra:  I am so happy I can have a voice to inspire others who are similar to me, and hope to serve the diabetes community to best of my ability this year! The best way to reach as many diabetics as possible is through the DOC and social media! You can follow my year as Miss Idaho in the following ways:

Twitter: @sierra_anne93, @missidorg
Instagram: missidahoorg, sierra_anne_nicole
Facebook: Miss Idaho Organization

I have also had a lot of people ask me about sending letters and gifts! I adore snail mail, so everyone is welcome to send mail to:  Sierra Sandison, P.O. Box 6159, Twin Falls, ID 83303.  I love you all so, so much! Thank you again for all your support!

Thanks, Sierra!  You can follow more from Sierra on her personal blog, Miss Idaho, and via the #showmeyourpump hashtag.  We’ll be following your journey to Miss America this fall, and supporting you along the way!

Follow

Get every new post delivered to your Inbox

Join other followers