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Posts from the ‘Guest Diabetes Blogger’ Category

Guest Post: Let’s Talk About It.

Diagnosed with type 1 at age 15, Kimberly Hislop has been living with diabetes for 18 years. She’s been an insulin pumper since 2009.  Kim is currently studying psychology with hopes of one day working with people who have been diagnosed with chronic illnesses. She’s been a guest speaker for pharmacists, nurse practitioners, and physician assistants, teaching about diabetic complications from a patient’s perspective.  Her writing can be found at Deniabetic, and today she’s rounding out my week of guest blogs with a really important topic:  diabetes complications and learning to live well despite their diagnosis.

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Being diagnosed with diabetes is scary. We quickly learn that we can overcome our fear of needles as we do what is necessary to survive. In my opinion, the hardest fear to conquer is the fear of the unknown. As a person living with diabetes we hear the terrifying word “complication” and our thoughts run down the black hole of “what ifs.” This black hole can be depressing and paralyzing for some. I truly believe that the diabetic community needs to start talking about complications. Most of us can name them but that is where it ends. If we could understand what the complications were and how to treat them it could possibly lower the fear factor.

Seems simple enough, right? So why don’t we talk about it?

To me, people with diabetes are truly afraid of three complications:  retinopathy, amputation, and kidney disease. I have had to deal with all three of these. I think it is so important to talk about these for a few reasons. When you can find someone who has SURVIVED these complications it gives you hope. You can see that there is life after complications. Also there is treatment out there. When you diagnosis complications early, there is a possibility of reversing it or at least stopping the progression. It is not necessarily a “done deal.” We need to talk about these things so that we can learn to be an advocate for ourselves. If it is a new diagnosis, you may not know what treatment is out there or even feel that you can ask for a second opinion.

My first complication was neuropathy. It came on five years after my diabetes diagnosis, when I was 20 years old. I did not know anyone who had this complication. It was incredibly painful and debilitating. I spent six months in a wheelchair and had horrible side effects from the medication. I felt shame, guilt, and really misunderstood. Mostly, I felt alone. I followed what the doctors told me to to but like with most complications, they can’t tell you for certain that you are going to be alright. I became suicidal because I couldn’t handle living with the pain. I spent a few days in a treatment program and from there started talk therapy on a regular basis.

For me, when I am diagnosed with a complication my first reaction is to figure out what I need to do to treat it, if it is an option. I think it is overwhelming to deal with my emotions while dealing with going to doctors and figuring out treatment.  And after a complication diagnosis, I always wonder why. Why me? Why did this happen? What caused it? The problem with diabetes is that it is a self-managed disease. Sometimes the only answer I can come up with for the question “Why?” is “because of me.” I think of all the things I did wrong such as,

I didn’t test enough.
I didn’t count my carbs right.
I didn’t cover with enough insulin.
I skipped my shot.
I didn’t exercise enough.

The hardest complication to face was my chronic kidney disease. I did not want to talk to anyone about it. It took me a year before I made it public and really I was forced to when I realized that I needed to find a live donor for a kidney transplant. I did not want pity from anyone. I did not want anyone to ask me if I was ok because in truth, I was not. I did not have the energy to fake it for the sake of others. I also felt like it was my fault. If only I had taken care of myself during my college years, instead of living with an A1C of 19% for two years. I felt like maybe I didn’t deserve a new kidney.

I was also incredibly freaked out about having someone else’s organ inside of me. I was sure that I would feel different. I wouldn’t be myself anymore. I even had pictures taken professionally about a month before my transplant as a reminder of who I once was. My guilt and shame kept me from reaching out to others who were transplant recipients. When I would go to the doctor’s office it would be filled with people 20+ years older than me.

I felt alone.

I know I am not the only one. The problem is that we feel such guilt and shame that we don’t talk about it. I don’t want to talk about my kidney transplant because I know that people will assume that I didn’t take care of myself. I don’t want to share about my retinopathy because clearly I caused that myself. If you have ever felt this way, raise your hand. The truth of the matter is … diabetes is not your fault. There are some people who take the best care of themselves and they do not suffer from any complications, some take the best care and do. There are those that ignore their diabetes completely and yet are never diagnosed with a complication. Sometimes there is just no explanation for any of this.

It is so important for our community to talk about complications and the fears associated with them. Instead of feeling shame and guilt, we need to stand together. When you are diagnosed with a complication it is imperative that you connect with someone who has gone through it. It can take away some of the unknown fear.  Every time I have been diagnosed with a complication I have felt “this is the worst thing that has ever happened to me.” In the moment, that is what it feels like. But somehow, you survive. It takes hard work both mentally and physically.

We need to discuss the importance of mental healthcare in all of this. It is only natural to feel depressed when diagnosed with a complication. The fact is, you can’t take the best care of yourself if you are not feeling good about yourself.  We need to figure out how to take the stigma of “it’s my fault” if you are diagnosed with a complication.

Complications suck but there is a life after being diagnosed with a complication. So … raise your hand if you want to talk about it. Let’s get this conversation started.

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:: raises hand ::  I have written before about my own experiences with diabetes-related complications, and I know that sharing that information was simultaneously terrifying but also empowering.  By talking about the thing I needed the most information about and the most support with out in the open, I was motivated to move past fear and step towards positive actions to improve my health.  If you are dealing with complications, or simply scared by the thought, please raise your voice.  You are not alone.  And with early detection, early intervention, and good mental health support, we can find a very good life regardless of the road we’re on.  Thanks for sharing your story, Kim.  It’s an important one to share.

 

Guest Post: Does Diabetes Tech Assist or Insist?

Several years ago, I “met” DCScribe (who remains mostly anonymous) on Twitter and he and I did not see eye-to-eye on much, aside from sharing the diagnosis of type 1 diabetes.  For a while, the lack of common ground frustrated me because I identify with and bond over experiences, but then I realized the alternative viewpoints he provided were not only important but essential to my growth as an advocate.  It is good for me to hear perspectives outside of my comfort zone; they help keep me realistic.  And when I had the chance to sit down and have lunch with DCScribe several months ago, it was really nice to confirm that two people who might butt heads constantly can still share a mutual respect … and a lunch table.

He was diagnosed with type 1 diabetes at 8 months and has lived with T1 for more than 50 years. Over the course of his career as a journalist, he has worked as a reporter in Washington for 26 years covering the White House and Congress as well as conflicts overseas, hurricanes including Andrew and Katrina, and every presidential election since 1988.  He’s recently embarked on a new career in global health that will take him to the frontlines in the battle against Ebola, malaria, AIDs and other scourges around the world.

And today, DCScribe is taking a turn here at Six Until Me to talk about diabetes technology as something that assists or insists.  Read on for more.

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The older I get the more I’m struck by how the decisions I make in so many facets of life are deeply informed and influenced by my long career refereeing soccer at the highest levels.  It’s even shaped my relationship with diabetes technology. And yeah, I can hear the rumbling. “Holy hell. Where’s this going? That dude ought to check his ‘sugar.’”

But it does. And here’s why. Reffing has helped me understand the difference between someone (or something) who “assists” and someone (or something) who “insists.”

It’s a question every diabetic should ask when making a decision about the technology you need (and don’t), how to use it and whether it means being in control or under control. Understanding where that line falls and enforcing it is central to my D management and my easy, stress-free life with the disease.

I speak only for myself, of course, and concede there might be gaps in my perspective. After all, only two other people outside my wife and kids and my doctor knows of my condition and my identity. My wife knows I use a pump but doesn’t know the brand or really how it works. I never share my BGs with anyone, though I’ll offer vague updates at home such as, “I’m gonna wait a bit to eat dinner.” It works for me; I’ve never had a single bad day from diabetes in more than 50 years. Sure, some days are better than others but not one has been truly bad or difficult.

There are lots of reasons, but an important one is my comfortable but always skeptical relationship with technology.

I have no idea if I’m different in that respect. But from scanning the Diabetes Online Community twitter feed and beyond, I wonder if enough people asking the question about technology’s proper place and power. (Here’s one place where it was asked and discussed publicly. It’s a cautionary tale and luckily I can’t ever imagine finding myself in a similar place.)

At the same time, I’m not immune from the pull of technology. I use a pump and have for 16 years (though my current pump is 7-years-old. Let’s face it: a pump is little more than a tricked-out syringe.) It’s why I got my first blood glucose meter in the 1970s and have used one ever since (though my one-and-only meter today is 9-years-old.) It’s why I’ve never used a continuous glucose monitor and never will. I’m constantly examining that distinction and that, along with my natural skepticism keeps me from chasing the latest, often imperfect, shiny object until its use and accuracy are proven.

This also fits with my belief that too much information can be more of a burden than a savior, especially if that information is imperfect. I wonder too if a fixation on technology diverts attention from proven and powerful “human factors.” For me, the basis of my success and easy life with D is rooted in discipline when it comes to food, making sure I’m physically fit and a refusal to ever use diabetes as an excuse for anything at any time.

Which brings me back to the beginning and “the pitch.”

In soccer, most games have three refs (though in a lot of my games there’s also a Fourth Official.) The Center Ref is the only one with a whistle. He or she prowls the entire field and is the one person responsible for fair play and safety; for keeping the official game clock and chaos to a manageable level. The Center Ref is the ultimate and singular authority. All decisions start and end with him or her.

The Center Ref uses his or her experience, training, knowledge and physical fitness to manage the game, navigate nuances and the many “gray areas” woven into the Laws of the Game and to ensure the rules are applied in a fair and consistent way.

But the Center isn’t alone. Along for the ride are two Assistant Referees, one on each sideline. Without ARs, the Center’s job is difficult if not impossible, especially on a regulation field that measures 120 yards by 80 yards.
The ref crew is a team in the truest sense, but to work well, everyone understands this: Good assistant referees never “insist.” Their job is to “assist.” That means there are times when the Center Ref will wave down a flag (or tell an AR through the headset) because the Center Ref is in a better position or has more experience or a different understanding of the larger picture.

Replace “AR” with “diabetes technology” and you get the idea.

That’s why I seldom follow the number my bolus “wizard” spits out. Its why, when my meter says I’m 70 mg/dL and I’m getting ready to ref a game that will require running upwards of seven miles and demand thousands of decisions, including a few that are game critical, I don’t hesitate. I appreciate my meter’s “assistance,” jam a granola bar in my mouth, wash down with a gulp of sports drink and go. But not always. Sometimes I simply walk on the field and start the game.

I seek assistance in carefully chosen places. That makes perfect sense to me. It doesn’t mean I’m anti-technology.

I’m a guy, so I’m hard-wired to get all tingly from even most dubious technological “innovation.” It should be no surprise that I would have instantly given up insulin before surrendering my satellite phone or the solar charger for my up-armored laptop when I was reporting overseas. In the early 1980s I had a very public and very serious relationship with my 30-pound Teleram “portable” computer that I happily lugged from one corner of the country to the next so I could transmit stories to the Mothership at the wondrous rate of 1,200 baud per minute.

And yet, I still use a 5-year-old iPhone and have zero urge to change because … it works.

Technology is great. I love it. I use it – a lot of it. But skepticism is more useful for me, as is enough patience to make sure the latest, greatest bit of technology works as advertised, and that whatever tech I use in my ride with diabetes knows its place, no matter how hyped or magical or shiny.

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Thanks for your perspectives, DCScribe.  And for the link to the oldest computer ever. 

Guest Post: LIVE! On-Air with Diabetes.

When I do speaking engagements, I get a little nervous about the arrow on my CGM before going on-stage, because a low during a presentation would be less than optimal.   How do you keep your wits when your blood sugar is tanking in front of an audience?  Live television anchors with diabetes know that feeling.  A few years ago, I met Cristina Frank through the #dsma Twitter chat and learned that she brings diabetes to LIVE TV every weekday evening, doing the blood sugar dance before every broadcast.  Cristina Frank is the evening anchor at KSNT News in Topeka Kansas. She anchors the station’s evening newscasts during the week at 5:00p, 5:30p, 6:00p, 9:00p and 10:00p, and today she’s taking the mic here at Six Until Me. 

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A lot has happened to me on-air. I’ve played basketball with Harlem Globetrotters, reported from the scene of bridge collapse into the Mississippi River, covered severe flooding of upstate New York and even did a creepy ghost hunt in a haunted inn. While all that footage is sitting in news stations’ archives – what hasn’t been captured on tape is my type 1 diabetes.

I was diagnosed when I was 11 years old. So, by the time it came to graduating college and entering the grand ol’ workforce – I had the diabetes basics down pat (or as much as I thought!). Carb counting, insulin ratios – no problem…but now, throw into the mix the stress of breaking news, an unpredictable schedule (covering a ribbon cutting one day to then switching to a downtown fire that you cover overnight), deadlines…and this was a whole new game plan that (9 years into the industry) I’m still trying to navigate.

One of those twists and turns – has been how to handle a low blood sugar on-air. Low blood sugars are already a monster in itself. Now, try throwing that hypoglycemic beast with solo-anchoring a show, bright lights and facing a camera that is broadcasting out to hundreds of thousands of people.

I’m the evening anchor for the NBC/ABC affiliate in Topeka, Kansas. I have a co-anchor – but sometimes I have to solo-anchor some shows. In those moments (and even when my co-anchor is around) I am vigilant about making sure a low doesn’t hit while I am front and center on the newscasts. I test my sugar multiple times before the show. I try to keep my levels in (what I consider) the ‘safe range’ and then I always make sure to keep my meter right by the desk. But, sometimes – diabetes is stubborn and likes to make sure IT has the limelight.


One of those moments happened a night I was solo-anchoring. I felt good. I was walking out to the studio holding onto my pile of hundreds of pages of scripts. I headed to the desk prepped for 90 minutes of news. Back-to-back I was going to one-woman anchor the 5:00p, 5:30p, 6:00p news.

My sugar before show time was a steady 134. I felt confident in that range. The teleprompter was ready to go and keep on track, microphone was clipped on – lets do this!

The 5:00p newscast was cleared….the 5:30pm newscast was solid. One more newscast left. That’s when it hit. I got a little lightheaded (maybe it was just the fact I had talked for an entire hour), I was STARVING (it was almost dinner break anyways), I started to get a bit hot (I am sitting under a plethora of BRIGHT lights). All that reasoning went out the window when I did the no-excuses meter check: 54.

I didn’t have time to run to my desk to get a juice box. The newscast was starting and the news music was right on cue. There was no hiding. There was no, “good evening, northeast Kansas….can you give me 15 minutes to have a juice box?”

Nope. It was game time to power through this. I had to focus. I looked at the prompter (maybe it looked a bit hazy and those words appeared to be dancing around like they were doing the limbo) but I read it the best I could. I knew what stood between me and that fruit juice blend – was 10 stories. If anytime the phrase, “the show must go on” applied – it was here and now.

As soon as we got into the first commercial break – I talked through my microphone to my producer: “Can someone please go to my desk and open the first drawer? I need a juice box in there AS SOON AS POSSIBLE … I’m feeling low.”

Within seconds, a director was already down the hallway to come to my sugar rescue. I had 5 minutes – commercial break + weather forecast. Before the meteorologist had made it back to the anchor desk to cross-talk with me … I was feeling better.

At the end of the show, I asked everyone, “did I seem off?” To them, they couldn’t tell the difference.

When I first went into this industry, I secretly worried having my diabetes out there would be seen as a weakness. Raising questions from employers, co-workers, in the hiring process….is this going to be a negative held against me? This time had once again proven all of those fears and concerns – did not exist.

I am lucky to have always worked in newsrooms where my colleagues have always supported me – and have many times, ran out to a newsroom desk drawer to get me a juice.

Life in a newsroom can be very hectic and ever changing – no two days are ever the same. Throwing type 1 diabetes into that mix can be even a little more challenging. Juice boxes are a staple in my desk drawer. I have a special basal rate I have set with my doctors to make sure my sugars are on-point during a newscast. Even when I was a morning anchor, I had a special basal setting for waking up at 2:30 am (yikes!), being at work at 4am, on-air 5-7am and then going to bed at 6pm.

My producers, co-anchor, news directors, heck – the whole station knows I have type 1 diabetes! Most importantly, the community knows I have diabetes. Kerri was the person who inspired me to put my type 1 diabetes-ness (is that a word?) out there. And that has opened doors.

It’s introduced me to kids, people and families who are all impacted with type 1. I’ve been asked to visit local camps for kids with type 1 diabetes. I’ve met a man who is biking around the country taking part in several JDRF Rides to Cure. I’ve bumped into other type 1’s where I see a “pump in the wild.” Those moments have turned strangers into friends asking about temp basal rates before exercising.

Keep on talking about diabetes. Keep on tweeting about diabetes. Keep on posting about diabetes. Keep on creating awareness on diabetes. You can guarantee, I’ll be watching and cheering.

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Thank you so much for sharing your story, Cristina, and I am really glad you’ve become such an integral part of the diabetes online community.  Cristina grew up in Massachusetts and is a proud fan of the Boston Red Sox (yay!)!  You can follow her on twitter @CristinaKSNT or on Facebook at facebook.com/cfrankKSNT.

Guest Post: Keep Calm Once They Cover Dexcom.

Today, Colleen is taking over my blog while I’m taking a few days off.  And I love her introduction bio so much that I’m pasting it in without edits.  Colleen is terrific, opinionated in a way I respect deeply, and today she’s talking about the importance of having access to a continuous glucose monitor (CGM) as she ages.  Take it away, Colleen!

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I signed up for Medicare this year. Deep breath. (I’m having a really difficult time believing that I’m 65.)

I’m not using Medicare (yet) because I’m still working. I like my job. I like my insurance. I like my five minute commute. But mostly, I like my Dexcom CGM (Continuous Glucose Monitor).

I always thought I’d be retired, lazing around, maybe playing some tennis.

Not really, I’m not lazy and I haven’t played tennis in a gazillion years. But, I really was looking forward to doing some volunteer stuff, especially working with kids who have learning difficulties. I’m a former Special Education teacher and I love seeing/helping kids to “get it.” Literally watching that invisible light bulb start shining when they would “get it.”

Instead, I’m working so that I can keep my Dexcom CGM.

Not to worry. I’m not suffering – I work as a church secretary, an absolutely delightful job!

Several years ago, when I started seeing a dermatologist, he explained that removing those things growing on me would be covered by my insurance because, “It’s covered by Medicare.” I was insulted and stated, “For heaven’s sake, I’m NOT on Medicare.” He then explained that if it was covered by Medicare, then insurance would pay for the procedure. “Oh…”

And now, turning 65 – my own light bulb has turned on. But it’s not going anywhere.

I remember talking with my primary care physician at an appointment once and saying how I work so hard to maximize my use of health insurance. I am careful to coordinate lab work with her and my endocrinologist. I keep up with scheduled appointments. I try very hard to be a wise consumer of health insurance. And she calmly replied, “You’re cheaper to Medicare if you’re dead.”

Well, that sucks.

Maybe – but – the cost of keeping me alive might be a sh**load more (Kerri said I could use bad words) [Editor's interjection:  You can use all the words you'd like, Colleen.]  without my CGM.

And I truly believe that soon – Medicare will figure out that the expense of a CGM is whole lot less than the expenses of ambulances and ER visits and hospitalizations.

There is no public transportation up here in the woods so, I have to drive.

I almost always (I’m being honest) (95% of the time!) check Dexcom before I drive anywhere. I frequently have to make short trips during the day for work and Dexcom has certainly kept me in my office/the parking lot sipping on juice before leaving.

I hate shopping. Yes, really. Shopping irritates me. Shopping and going low is really annoying. The nearest real mall is over an hour away and there have been times that I’m pulled over at an exit or a rest area because Dexcom beeped at me. More juice … (Not easy in the winter when it’s frozen. Yes, I have glucose tablets, also.)

We get a whole lot of snow up here on our hill. And it’s not plowed every hour on the hour. There are times we literally cannot get out (or in). I’ve checked with our local police to ask – what would happen if I needed an ambulance in the middle of a snowy night? The answer – They’d hike up our hill with a sled to get me out if needed. Scares the sh** out of me.

Way back when I was diagnosed, I knew I would want a pump. At that time, you had to have been on MDI (Multiple Daily Injections) for a couple of years before they (insurance) would even think about approving a pump. By the time I was ready to start pumping, it wasn’t that difficult.

Thank you to everyone who advocated for pumps for all of us who want one.

Way back when, Kerri was one of those people writing about her fight to get a Dexcom CGM – with letters and refusals and more letters and more proof and finally – Dexcom. By the time I was ready to start using a CGM (I always swore there was NO WAY – have you seen the needle in those things?), getting a CGM wasn’t as difficult. (That needle? Not an issue.)

Thank you to everyone who advocated for CGMs for all of us who want one.

And now – those of us who are and will be the d-elders need to be able to continue using or begin using CGMs for better health and safer living. And your help is needed. You’re not just helping the older d-people. You’re helping yourself. Because you know what? We’re all leading healthier lives even with Diabetes because we work hard to stay healthy. If a CGM helps, we should all have access to that.

How can you help?

JDRF makes it easy. Go here:

Help others, and help your future selves -  and the children who will grow up – just by contacting a few of your state’s senators and representative.

It’s a win-win for all of us.

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From Colleen:  “I’m Colleen and I have type 1 LADA – Latent Autoimmune Diabetes in Adults. Diagnosed at the age of 55 (yes, really!), I was just a tad surprised. My husband and I live and work in New Hampshire and even enjoy the snowy winters. We could be retired but, the need for health insurance has us both working at a local church. Yes, together. Yes, we’re surprised. No, we haven’t killed each other, yet.  Hope you’ll introduce yourself and it’s nice to meet you!”

Please say hello to Colleen, either on this post or at her blog, D-Meanderings.  For more on the goal of covering CGMs for Medicare, check out these links:

Guest Post: “KITTY!!” and Other Low Tales.

Mindy was diagnosed with type 1 diabetes during the age of NPH (not the actor) and Regular when she was 7 years old. She’s been involved in the diabetes community since she was diagnosed and got involved in the online community when she started her blog (Telling Type 1 Diabetes Who’s Boss – which she recently changed to There’s More to the Story after getting diagnosed with ADHD, anxiety, and OCD.)  Today, Mindy is guest posting about how her low blood sugars can go from goofy to goat cheese in a matter of seconds.  Read on to see what I mean.

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When I’m low, I get extra chatty and very loopy. I’m already chatty without outside (well inside) factors and loopy- hello ADHD! Add the low blood sugar, and it becomes quite entertaining. After fighting with lows for four days, I’ll take the entertaining because well … the little things, right?

No seriously. Blood sugar, what in the world is going on? I actually still don’t know (even called the endo!)

I made changes; lowered Lantus, lowered basals, changed ratios and corrections, lots of juice, lots of snacks (should I be truthful and mention the Chinese food, fried food, red velvet cake, chocolate covered pretzels, gummi-bears, and beyond I have consumed this week? Most were related to lows- but a few- I was in a bad mood and wanted it).

Some of the nights I woke up high. Needless to say, I was exhausted. The lack of sleep, emotions of the entire thing, and how my body was feeling (plus the heat wave that hit the Northeast)-led for a very fun Mindy. I am so grateful for the understanding people I have in my life who read my texts and tweets, saw my snaps, and stayed with me on the phone during lows (even during a bad mood).

I got the loopy thing going for me, right? I’ll go ahead and say that makes me absolutely adorable.

Everything is hilarious at this point and once the giggle fest starts, nothing can stop me.

You can find me screaming “KITTY” everywhere I go and the cat is terrified. I chase him for love that he doesn’t want to be a part of.
I have a knack for getting lost and being clumsy and low BG makes it even worse. I’ve been walking around with my arms extended ready for a fall and extra time for the navigation purposes.

My new favorite low moment? Thursday night (not the fact that I couldn’t get my blood sugar up until 1AM and not the fact that I couldn’t enjoy my delicious cupcake because nothing tasted delicious and my stomach was a mess).

After my third juice and complaining while giggling, I SHOT up and screamed “GOAT CHEESE.”  I immediately ran to the fridge grabbed a container and a spoon. Ran back to the living room. Kept standing in the middle of the room (because that’s how I roll. There’s something about a low blood sugar that wants me to keep moving- at camp people chased me to sit down to treat a low and eventually get a mini-glucagon). Enjoying the delicious goat cheese (and remembering to take a Lactaid!). I also added some awkward low-infused dancing (to some silent music or maybe very quiet music?). In between spoons of goat cheese, I used the spoon as a wand or pretended to be a conductor.

Yes. That all happened.

I also embrace my child-like sass and blame my endo for bringing up the low blood sugar conversation – about how we don’t want lows – Which makes me gawk every time and ask how? I’m trying to decide if I would rather go the endo while it’s my period and trying to discover the magic formula for not being high during it (like I did last week) or in the middle of constant lows like this week.

Gosh, I thought the “real world” would make blood sugar management easier. You can take the college out of the girl but not the T1D, unfortunately.

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In addition to telling her story here today on SUM, Mindy is the Program Assistant at the College Diabetes Network, CDN, in Boston, MA.  She graduated Cum Laude from the University of Georgia in May of 2015 with a Bachelor’s in Social Work and minor in Sociology (which throws her immediately into that aforementioned “real world.”)  

After living in Georgia in a small town, her whole life and being Pre-Law since she was 14, she decide law school wasn’t right for her and moved to Boston. In addition to the diabetes bits and pieces, she thoroughly enjoys diabetes camp, travel, crafts, running, quotes, reading, binge-watching Netflix, and being awkward. You can follow her on twitter and Instagram @mindy_bartleson.  Thanks for sharing your story today, Mindy!

Guest Post: #SpareARose and Symplur.

I’m late with today’s post, but it’s a good one.  :)   This afternoon, Chris Snider of A Consequence of Hypoglycemia has contributed a guest post about Symplur and the Spare a Rose, Save a Child campaign.  It’s an in-depth look at how the stats of the #sparearose hashtag campaign influenced the spread of the message.  This post is an interesting peek at where analytics and community passion line up, and where they don’t.  Thanks, Chris, for offering your insight!

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I started working with the folks at Symplur at the beginning of this year. My objective was to tell stories and bring the patient community further into the conversation around data – specifically the data they are generating through health conversations on Twitter. After the Spare a Rose campaign concluded, I reached out to Kerri to see if I could help shine a light on the 2-week whirlwind using Symplur’s fancy analytics tool, Signals. I was given four questions to try to address.

1. How did the message spread? Did it reach outside of people with “diabetes” in their profile?
2. What kinds of messages resonated on the whole? Calls to donate, stories about why insulin matters, etc?
3. Did people with small reach still have a big impact because of the close knit nature of the DOC?
4. Can the data prove that every voice does matter?

(1.) What the data says: people associating themselves with diabetes in their screen name, user name, or description represented 43.9% (321) of #sparearose participants, but generated 63.5% (5,825,580) of the impressions. What is difficult to report on is how many of these impressions overlap within the community. How many followers do each of the 43.9% have that are associated with diabetes in one form or another? How many impressions from the other 56.1% were made on people living with or associated by diabetes? It’s difficult to truly parse out where the venn diagram sits, but I think it’s safe to say the diabetes community came strong with their effort to spread the word. This does leave me with some bigger questions to consider for 2016: How might we increase the number of people sharing #sparearose that aren’t immediately associated with diabetes? Should that ratio always favor the diabetes community? How might the appeal of Spare a Rose better resonate with people without diabetes?

(2.) I tried to see what kind of activity was generated around tweets featuring the word ‘donate’ and ‘insulin’ as those are the two biggest subjects related to the Spare a Rose campaign. Every tweet including the word donate included a link to sparearose.org or the subsequent donation page. Similarly, 93% of links including the word insulin included a link to one of those two pages. It makes sense, right? If we’re going to ask people to donate, we need to show them where to go. If we’re going to appeal to the life-saving insulin #sparearose provides, we need to include a link to show people where to go. Looking past the percentages, however, reveals something quite curious. There were over twice as many (2.3x) tweets featuring the word insulin as there were the word donate. What would the final fundraising totals look like if more tweets mentioned the fact that one of the goals of #sparearose is to collect donations? Something to think about, perhaps.

One other stat I noticed was that of all the #sparearose tweets, 67% of the ones that were recorded were Retweets. I wonder what this data would show if more communication about #sparearose was original thought rather than rebroadcasting the words of someone else. To be fair, I’m just as guilty of this as the next person. Sometimes someone else does a better job of saying what I wanted to say and rather than repurpose someone else’s thoughts and words, a simple RT is enough to get the point across.

(3.) To address this, I tried to determine what maximum follower count yielded half of the total impressions from the reporting period. And, what maximum follower count yielded half of the tweets. Where is the tipping point in the makeup of participants that best represents how much of an influence a smaller following can generate. My impressions goal was 3,536,645. Tweets was 868.

Of all the people participating in #sparearose on Twitter, participants with 19,150 or fewer followers generated a little over half of the impressions recorded – How many participants have fewer than 19,150 followers? 97%. 19,000 twitter followers isn’t realistic for most of us, so to put all of this in perspective, participants with 1,000 or fewer followers generated 3% of the total impressions recorded. A single tweet from Crystal Bowersox makes a huge difference in terms of exposure.

Of all the people participating in #sparearose on Twitter, participants with 945 or fewer followers sent a little over half of the tweets during the reporting period. So, most of the tweets came from people with less than 945 followers, but they generated less than 3% of the impressions? My thoughts on this lead into the final question.

(4.) Do small voices matter? Unfortunately I can’t report on how many links were clicked, whose tweets generated the most clicks to sparearose.org. Crystal Bowersox understands the value of a vial of insulin, but do her 60,000 followers? But, for someone with 150 followers, how many of them are going to acknowledge and engage with a donation ask? It feels cold making all of this a numbers game, but the numbers fascinate me. Is there a point where you have too many followers to trust that any significant percentage will engage with a fundraising ask? How likely will followers outside of the diabetes community donate? Should we, all of us, try to cultivate a following outside of the diabetes community in addition to the relationships we build up among the pancreatically-challenged? Is it a matter of making the right ask or the right number of asks?

So we’re clear, I don’t think it’s the responsibility of the entire diabetes community to think about the nuts and bolts of how all this works. What matters most is the passion to connect with others and help educate whoever will listen to the reality that a little can mean a lot to a child with diabetes. Thanks to people like Kerri, we can make a difference. Even if the numbers from Symplur may suggest otherwise, believe me when I tell you that every voice does matter. Every one of you reading this, telling your story, paving the way for someone else with diabetes to feel safe enough to join our crazy little group, all of us are making a difference.

#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.

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