Monday, June 30, 2014

Video Reboot.

Related Posts Plugin for WordPress, Blogger...Just a quick note to say that the You Can Do This Project has a new introduction video:

We hope you'll continue to share your story, and encourage others to do the same.

Wednesday, June 25, 2014

"How Are You Managing Your Diabetes"?

Are you asking what devices I use? A glucose meter, an insulin pump, and a continuous glucose monitor (CGM), mostly. Sometimes my phone joins the party. I know that the tools I use are not indicative of how "bad" my diabetes is, but I recognize that you may not know this.

Are you asking about medications? My insulin pump uses short-acting insulin (Humalog), if that's what you're wondering. I know that insulin is a scary medication to have to use, and I've had to reach a place of acceptance. I don't expect you to realize that on your own.

Or maybe you want to know my A1C, to give some indication of how "controlled" I am. That's what the measurement exists for, right? To be able to judge? I clocked in at 7.0 last week. Does that tell you everything that you want to know? I know that it won't, but I acknowledge that this is the easiest way for you to find an answer to what you think your question is.

It could be that you're wondering how many severe glycemic excursions I experience; how many times my postprandial readings fall outside of a specified range. Maybe you wonder what my fasting numbers look like. They may tell you something, but with the absence of context I know you won't be allowed to see the full picture.

Do I count every carbohydrate accurately? Do I bolus with precision and punctuality? Do I make smart food choices? Not all the time, no. But I strive to be kind to myself and realize that there is no "perfect" when it comes to diabetes.

Perhaps your curiosity lies in my abilities - do I feel up to the task? Do I wake up each morning motivated to do all of the things I must do to care for myself? Do I actually live when I live with chronic illness? Those are valid questions.

It is said that living with diabetes is a test of patience. This is true for more than one reason; while the disease itself tests me daily, the conversations and questions it inspires in my daily life allow me the privilege of practice: to not bristle at a sharp comment; to swallow the instinct to be defensive; to remind myself that someone's questions about my diabetes are always, always shaped by the experiences that person has had in their life and any misdirected hate has actually nothing to do with me; to practice kindness with both myself and with others. Each question is a chance to remind myself of our shared humanity and curiosity and to respect and (when warranted) educate those around me.

Part of what is so challenging about advocacy is the vulnerability required of those sharing their stories. Part of the reward, though, is that the process allows us to practice and become better human beings.

Too deep? I don't think so. We're getting better, and we're doing it together.

Monday, June 23, 2014

MasterLab / #CWDFFL14.

Next week is going to be one big blur of diabetes advocacy and emotions (and being without my kid for a whole week) (cue more emotions) so please leave a message kthanks BEEP.

By way of a scholarship* (immense gratitude as I wouldn't be able to attend either of these events without a scholarship's help), I'll be at the Diabetes Advocates MasterLab event and then the Children With Diabetes Friends For Life conference in Orlando, FL. And then because I really love a three-pronged challenge we will also be exhibiting the You Can Do This Project during FFL's exhibit hall hours.

MasterLab is on Wednesday. The exhibit hall also opens on Wednesday. Stress; I haz it.

Luckily I have some great friends and advisory team members who are more than willing to make this all work out. (Are we sure that beaker in the MasterLab logo isn't actually some sort of cocktail, because a few of us may be looking for one after trying to balance all of this.)

I'm really looking forward to the MasterLab as a way to figure how to move some things forward, and also because I'll get to meet so many of my favorite fellow advocates in-person, finally. There's a special magic that happens when we get a bunch of us into the same physical space.

In relation to exhibiting You Can Do This Project, I want to say a BIG THANK YOU (imagine me waving my arms around in an exaggerated fashion while saying that) to two organizations that helped me pay for the stuff we'll be giving away at the booth:
Like so

Thank you to Asante Solutions, makers of the Snap insulin pump, for paying for 1,500 You Can Do This Project bracelets to be given out to FFL attendees. You may recall that I did a four-week trial of their insulin pump last December. They'll be at this conference and offering free trials with their insulin pump there, too.

Thanks also go to Akibah Health for covering the costs of printing flyers and magnets (we're going to have magnets!!!) to hand out. They are developing a smartphone case all-in-one glucose meter, and will also be at FFL.

These are incredibly generous gestures, considering YCDTP is not a registered non-profit (we're a grassroots thing that dreams of being an official non-profit some day) and the only way you'd know they covered the bill for these is that I'm telling you right now. No co-branded anything. No signs of recognition at the booth. Just this blog mention/disclosure and my eternal gratitude to them for stepping up in a "we'll help where you need it and then just kind of back away and let you guys do your thing" kind of way.

Hell yeah.

It's also worth mentioning that CWD very generously "upgraded" us to a booth space (instead of the table location we started out with), so we'll be sprawling out in our 10x10 area, maxin' and relaxin' and actin' all cool. Thank you thank you thank you, Jeff and Laura.

It will be a crazy week that I'm crazy thankful to be having. Let the packing procrastination commence!

*The scholarship from DA covers the cost of my flights to and from the conference, the shuttle between the airport and hotel, conference registration, and the hotel room that Sar-Bear and I will be sharing (scholarship recipients were required to room together, as part of the whole deal - I'm used to that, anyway!). FFL just wouldn't be the same if Sara and I weren't sharing a room!

Tuesday, June 17, 2014

A Bad Habit.

When my endocrinologist downloads the data from my Dexcom receiver later today during my appointment, she's bound to notice quite a few gaps - like the one last night, where there will be no data from around 11:30 pm until I woke up this morning at 5:45 am.

You see, about a half hour before that I had clocked in at 80 mg/dL. I had no insulin on board and no food in my stomach, as dinner was hours before that. I hadn't gotten much exercise that day or the day before, so I felt reasonably comfortable taking the gamble of doing nothing about a reading that teetered right on the cusp of being "low".

Literally the only things I did in the next few minutes were brush my teeth, plug in my phone, and lay down. I tossed and turned though, and couldn't find a comfy position. And when I finally did?


Where the hell did that 67 come from? And then the 55? Mild sleepiness transitions to anger: Ugh, GOD, I'm fine, stop freaking out.


That's it; I'm done. You're done. 

Some might say, "TURN DOWN FOR WHAT". Lately, I too often say, "SHUTDOWN FOR SLEEP".


It worked out in this instance, but there's never any guarantee - when I turn off my CGM receiver, I'm opting out of a safety net. In theory this shouldn't bother me, as I should be able to use technology in the ways it works for me (and opt out of it when it doesn't), but that all too often comes with a side order of guilt. When I'm forced to decide, "what's more important - sleep or safety?", all too often the need to sleep has been winning.

Tuesday, June 10, 2014

Joslin Diabetes, Dexcom, and "The Institute".

Related Posts Plugin for WordPress, Blogger...I just got this email (bold emphasis is mine):
BOSTON (June 10, 2014) – Joslin Diabetes Center today announced the introduction of the Joslin Institute for Technology Translation (the “Institute” or JITT), a new division of Joslin Diabetes Center that formalizes the delivery of Joslin’s clinical solutions to medical device and technology companies. In addition, it was announced that Dexcom, Inc., a San Diego-based maker of continuous glucose monitoring systems for patients and blood glucose monitoring systems for healthcare providers in hospital settings, has joined to become the first Founding Member of the JITT and is a member of the Institute’s Advisory Board. 
“Our goal in establishing the Joslin Institute for Technology Translation is to further the use and development of technology and medical devices to improve diabetes care, improve the lives of those living with diabetes and reduce health care costs,” said John L. Brooks III, President and CEO of Joslin Diabetes Center. “With Joslin’s expertise as the world's largest diabetes research and clinical care organization, the Institute is uniquely positioned to impact digital health by offering meaningful solutions to strengthen technology, and we are extremely pleased to have an organization of Dexcom’s caliber join us in this quest.” 
The mission of the Joslin Institute for Technology Translation will focus on four key areas: 
· Create and offer physician-designed, and patient-tested, decision support tools for improved solutions in glucose and insulin management;
· Be a powerful voice in moving digital health to improve diabetes care in a cost-effective approach – collaborating with numerous medical device and technology organizations;
· Create individualized, confidential collaborations with industry partners providing new solutions that advances the monitoring and treatment of diabetes via new technologies; and
· Pioneer innovative education and training programs that optimize decision-making processes and the adoption of best-in-class technologies for healthcare professionals and patients world-wide.
Mountains of jargon aside, this sounds like something to get excited about. Full press release found here.

Friday, June 6, 2014

Five Years.

Five years ago today, my insulin pump died and a photographer didn't show up. Oh, and I got to marry my best friend.

It was a full day.

It also taught me that one should never stuff an insulin pump under a pair of Spanx in 80+ degree heat while wearing a heavy satin gown. LEARN FROM MY MISTAKES, YOU GUYS.

Wednesday, June 4, 2014

How Will I Know?

How will I know if this sensor loves me?
I say a prayer with every reading
I watch the graph whenever I eat
I'm asking you why I can't just believe this thing

This sensor's new
Why do I feel weak?
How will I know?

Related Posts Plugin for WordPress, Blogger...

(Thoughts on some graphs that feel too good to be true lately. Why isn't my gut reaction to be happy for these results, instead of being skeptical of their accuracy?)