Category: Conferences

Sex, Insulin, and Rock & Roll – with Strangers

Jim Turner, Christel Marchand Aprigliano, Anna Simos, and Nicole Johnson (l. to r.)
Jim Turner, Christel Marchand Aprigliano, Anna Simos, and Nicole Johnson (l. to r.)

Diabetes isn’t fun, but if you’re with the right people, it can be funny. Especially when sex is involved.

Wait…what?

I had the honor of being on a panel with some smart, funny people. “Sex, Insulin, and Rock & Roll,” sponsored by Insulet on Friday night at the American Association of Diabetes Educators (AADE) annual convention in San Diego. We packed the house.

Who were those smart, funny people? Jim Turner, Anna Simos, and Nicole Johnson.

The audience was a glorious mélange of diabetes educators and people with diabetes. We were all there to explore how to have conversation about taboo subjects: sex, alcohol, body image, disordered eating, drugs, living real lives with diabetes.

I get to talk about taboo topics a lot with my tribe when we are at The Diabetes UnConference, but that’s private discussions amongst peers. It’s different when you’re sitting in a standing room only area (with apparently a long waiting list!) of mostly strangers. Thank goodness for the funny, smart people sitting next to me. And an extra thank goodness for the delicious beverages served.

#Sexpump

Insulet took a huge risk by allowing us to answer questions from the audience and to talk without restriction. While they sent out a survey before the panel asking what CDEs and PWDs (people with diabetes) wanted to hear about, you never know what could happen.

And I don’t think we or the audience disappointed. Like a public announcement that the Insulet Omnipod has a new nickname, stolen from a comment by Amy Tenderich of DiabetesMine: #sexpump. Jim ran with it and suggested it become part of the new marketing campaign for Insulet. (Please expect some forward thinking CDEs to mention #sexpump to their patients, tongue in cheek.)

Sex and Diabetes

Sex was the first topic we tackled. Questions from the survey included how to feel sexy with a pump, intimacy where spontaneity can result in lows or highs, and dating disclosures.  (But Anna won with her story of ripping off her Omnipod by accident during an intimate moment.)

Body image plays a huge part in intimacy. I shared that I don’t feel sexy with the bumps and lumps from years of injecting. (This elicited a “that’s so sad” from a CDE in the audience.) I said that’s OK, because I found a partner who appreciates the CGM and Omnipod attached to me . My husband is a sci-fi fan. I consider myself a cyborg these days, so I’m sexy Seven of Nine to him.

Disordered Eating

The packed audience.
The packed audience.

While there weren’t any specific questions posed beforehand, the survey showed that both CDEs and PWDs wanted to talk about disordered eating. As the only one with a history of diabulimia and disordered eating, I shared my story. It’s  important for CDEs to talk with their patients about signs and symptoms of disordered eating. (Some of us just needed someone to ask…)

Disordered eating with diabetes isn’t just diabulimia (skipping shots) It can and does include anorexia, bingeing, orthorexia, and bulimia. It’s scary to broach the subject and some CDEs may not know where to start, which is why I mentioned great resources, including WeAreDiabetes, Diabulimia Helpline, and DiabetesSisters.

Alcohol

Why bring up drinking with diabetes with young (and older) patients? Because telling them “just don’t drink” is a waste of breath for most of us; learn to drink responsibly with diabetes is a much better discussion.

Glucagon, while lifesaving in most situations when a person with diabetes has a debilitating low, is pretty much useless when you’re imbibing alcohol. (Your liver is too busy with the alcohol to respond to the glucagon.) This means you can’t just carry a glucagon kit and expect that you’ll be fine. (That was my tip.)

Jim shared a cautionary tale. After a night of adult beverages, food, and a stubborn high blood sugar, he took a second insulin injection and headed to bed. He awoke to paramedics and an inability to say who he was or who his wife was. A simple error was almost deadly.

Pregnancy

Nicole and I were the moms on the panel. Both of us shared experiences: hers with a pregnancy before CGMs were widely used and mine when diabetes was not the primary focus. I expressed a desire to have CDEs to share that women with diabetes can have healthy pregnancies and to work with their patients to get into that mindset.

I was told at Joslin when I was diagnosed that there was no reason why I couldn’t have a healthy baby, yet I hear women every day say they are told not to pursue motherhood because of diabetes. This shouldn’t happen.

A Thank You

We ran out of time, but not questions and certainly not laughter. These taboo topics need to be discussed and I hope that our panel provided some food for thought for the audience. I’m grateful for Insulet bringing us all together, the honesty of the panelists, and the questions asked by CDEs and PWDs. I hope that this is just the beginning of many…

(Disclosure: Insulet paid me to talk openly about my diabetes “life experiences,” although you know I’m not shy and often do so freely. I also wear an Omnipod; they do not sponsor me or pay me for that.) 

#HealtheVoices16

HeV16 Theme GraphicIt’s taken me a few weeks to get back into the swing of things (and by things, I mean life), but I wanted to share my takeaways from the most recent HealtheVoices conference in Chicago. There are some other blog posts that will talk about what happened, but I’m going to give you my perspective. And you know that it will be honest and forthright, because that’s who I am.

Not a wallflower.

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HealtheVoices is designed to bring advocates from different health conditions together to learn about how to amplify our voices online and create deeply rooted connections. (In fact, the tagline for this year’s conference is “Deeply Rooted Connections.”) I attended last year and was honored to be asked back to be an advisor for this year. (Disclosure: Janssen Pharmaceuticals and Everyday Health paid my travel, lodging, and compensated me financially for my brilliant mind. They did not ask me to write about this and didn’t pay me to do so. I don’t do that. )

HEV16_Advisor

Who?

There were over a 100 of us (which is almost double the amount from last year) and we spanned a wide range of conditions: HIV, Mental Health, RA, MS, IBD, Psoriasis, Cancer, HepC, AFib, Blood Clot, Diabetes, and more. We were there to connect and learn – from each other and from experts.

What Happened?

20160415_healthevoices_127People talked. (Yes, that’s me.) I was able to share my story and my passion about my community, ending with what I believe: “Find your tribe. Love them hard.” And my tribe got bigger that weekend. I wanted to hear what other communities were doing and how we can support each other.

I’m so impressed by what many of these individuals have done with their own passions. Some choose to share their lives out loud in public to help others get the information they need, others to help create safe communities where shame and stigma do not exist, and others to make sure no one feels alone.

It Was Like Inside Out

There was joy in seeing friends and meeting new people. Sadness when it was time to go. Fear from some on how to take all we learned and apply to to our own lives and communities. Disgust at a TSA officer who questioned an individual about her handicap. There was anger at some of the things that keynote speakers said during presentations.

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OK, a lot of anger.

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Jamie Heywood and Dr. Kevin Pho, MD were our keynote speakers and reflecting back on their presentations, they weren’t really geared to a patient advocate audience, which made for some contentious moments. (I’ve given some suggestions for keynotes next year. Stay tuned.)

The Sessions

One of the awesome takeaways was the visual creation happening during the sessions. I’m sharing a few that I thought are worth examining further:

Compassion Fatigue

We have it. Any of us who care for someone else, even remotely and online, can experience this. (It can also be called burnout, which is more real to me than just “fatigue.”) I had a wake-up call with this and I know I’m not alone. I love: “No is a complete sentence.”

Let's Talk Compassion Fatigue_Talk 1_Small

 

Keeping It Fresh

How many times can you talk about a low blood sugar? How can you create a content calendar that you can live with? How do you define your writing and what content you share with others?

I loved Amy O’Connor and Rose Pike’s discussion on headlines. Big time. That’s another post in itself.

Keeping It Fresh_Small

Better Together

While this was one I couldn’t attend because it was being offered at the same time as Everyday Health’s Keeping It Fresh session, I was able to get great insights and ideas from this visual representation. (And I’ve already started to incorporate some of the Top 10 rules.)

BetterTogether_small

 

What’s Next?

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We will be making our own journeys this year. But we’re not alone.

Ask questions. Connect with people who may be outside of diabetes how they do it. How they live? What they do to advocate for themselves and others? What can we do together? How can we make it better, easier, or if nothing else, more exciting as we all travel our own health journeys.

I’ve got my bags packed. And my traveling buddies. Let’s go.

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Find your tribe. Love them hard.

Stop.

It’s no surprise to those who know me or read this blog that I have fingers in a lot of (no carb!) pies these days. What started with this blog has blossomed into two non-profits, The Diabetes UnConference, policy advocacy, reviewing funding grant applications as a peer reviewer nationally and internationally, and attending/speaking at health conferences.

stop-sign-1420987-639x639This past month, I didn’t stop. Coming off the high of The Diabetes UnConference in Las Vegas, there was a short vacation with family (although John says that I really didn’t act like I was on vacation), then the launch of the DPAC #suspendbidding campaign and in the midst of it all, travel to the CWD Friends For Life conference in Falls Church, where Bennet and I unleashed the DPAC Diabetes Advocacy Boot Camp with some phenomenal guest speakers and calls to action. All good things. All important things.

Yes, I slept. Yes, I ate. Yes, I took time for myself. (Although in retrospect, reading a grant proposal with a highlighter in my hand while I got my hair cut doesn’t qualify as time for myself.) I was gearing up for a weekend conference that I not only wanted to attend, but had the privilege of helping to design as an advisor. On Thursday, I headed to Chicago, raring to go.

Off.

And I slept on the plane. Normally, once the flight attendant gives the signal that it’s OK to do so, I’m like a thoroughbred out of the starting gate, whipping the laptop out and working on projects and ideas while others watch cat videos. This time, while waiting to take off, I simply shut my eyes to meditate for a few minutes and the next thing I hear is the announcement that we were landing. That should have been my first clue.

Chit-chatting with the driver on the way to the hotel, I began to feel “off.” That “off” that you can’t really put your finger on, because you’ve done the mental checklist in your head:

  • Low blood sugar? Nope.
  • High blood sugar? Nope.
  • Food in your belly? Yep.
  • Could you be “real people” sick? Nope.
  • Hydrated? Yep.
  • Rested? Am I ever? But I just had a nap!
  • Is Venus in retrograde while you’re wearing itchy socks? Nope.

I assumed that it was a combination of getting off a plane and getting up early to get on that plane, but there was the little voice in the back of my head that said…  “Something else is going on.”

stop-1473017-639x772I checked into the hotel, intending to drop my bags and take a walk. That all changed when I opened the door to my room and a wave of exhaustion swept over me. Not a normal wave; a tsunami that scared me enough to text John and say: “I don’t know what’s wrong with me. What I am feeling isn’t normal. This is not normal exhaustion.” My smart husband told me to go eat lunch, then head upstairs and mediate for a few minutes.

A healthy lunch eaten and that meditation turned into a two and a half hour nap. I still felt tired. The next day, another long nap and still exhausted. When I asked friends why I might be like this (and saying that my blood sugars were in range and I wasn’t sick), the responses ranged from: “Could you be pregnant?” (Nopeity-nope-nope. The Kid will be an only child.) to “Have you checked ketones?” (Which was a smart idea and I didn’t have any.)

energy-1-1176465-640x512Everyone Should Know Rhonda.

And then I met Rhonda Waters. She’s part of the Johnson & Johnson Human Performance Institute, specializing in energy management. Not the kind of energy that keeps the physical lights on, but rather the energy that keeps the human lights on. During a reception at HealtheVoices16 (which I will share in a separate post as it deserves it!), I was introduced to her and joked: “Where were you yesterday when I needed you?”

I was trying to be funny, saying that I was tired and it wasn’t like me to feel like that. And she didn’t laugh, but rather talked to me about “forced recovery” which is what your body does when it’s void of  the mental, physical, emotional, and spiritual energy everyone needs.

I didn’t just listen. I heard and felt what she was saying. At that moment, I understood that if I kept depleting my energy, I was no good to myself, my family, my friends, and my community. The world will continue to spin without me attempting to direct its course.

At an energy break session on Saturday during HealtheVoices, a small group sat with Rhonda for what was supposed to be a quick 15 minute pick-me-up. An hour later (!), I left with words of wisdom from other advocates and Rhonda. My “ah-ha” for this conference was this:

“What would you say to a friend?”

Thunderbolt. And sadness.

What I would say to someone I cared about and what I had been telling myself were two very different things.

My question to you is this:

How do you know it’s time to stop before you get to “forced recovery” and what do YOU do to take time for yourself?

Right now (well, after this post) I’m reviewing my calendar and putting time in for me. And I’m going to stop removing those times that I had scheduled for me in favor of getting something else “more important” done.

I don’t want to stop. But sometimes, as I’ve learned this weekend, you have to stop before you can go.

Definition of Insanity: The Diabetes UnConference Las Vegas 2016

un-diabetes-conference-fullcolor-iconCall me insane. I’ll agree with you happily. 

One definition of insanity is doing the same thing over and over again, expecting a different result. (There are many who attributed that definition to Einstein or Twain, wrongly so, but it’s catchy and apropos, so who cares?)

The second Diabetes UnConference, held in Las Vegas from March 11 to March 13, 2016 proves that I am insane, because I wanted a different result.

The Diabetes Collective provides the framework, the facilitators, and many of the same topics. But what makes each conference different is the attendees and their inputs and insights. And not only was the conference different from the first held over a year ago, the outcome was different, too.

We had alumni return, volunteering their time to help ensure the “behind the scenes” items ran smoothly. They provided soothing continuity to me, a reminder that other people believe in this mission to provide safe, protective environments to talk about the psychosocial aspects of living with diabetes with others impacted by diabetes. My facilitators, many of them alumni themselves, gave their all to guide the conversations around the topics the attendees chose.

And the new attendees were… breathtaking. Some knew what to expect because they had friends who attended last year, but others came bravely, baring their souls. They have won my heart with their willingness to participate and add their voices to our community.

We also included a new group: PLUs, otherwise known as People who Love Us. Spouses, siblings, parents and significant others joined us this year, creating their own safe space to share. Do I know what they discussed? Nope. I’m not a PLU and because we honor the policy of not sharing what is said inside the sessions, all I can tell you is that some powerful bonds were created.

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2,521 years of diabetes was the final total in the room.

Some triumphant years, some scary years, but when I looked at all the fortitude and determination in those faces surrounding me, I felt like there was nothing that we couldn’t do together. We had Joslin Medalists (50+ years) and those who had been diagnosed less than a year ago. Some Type 2, some Type 1, some who were impacted by diabetes in their lives but living with functioning pancreases. We can move mountains or, if nothing else, support each other through peer support.

Tears. Laughter. Anger. Frustration. All to be expected. After all, this is my tribe. And I love each of them not because of the connection… I love them for who they are at the very core of their beings – and it has nothing to do with diabetes. And what was different? Everything, because my tribe chose the topics and then bared their souls. New year, new souls.

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I look forward to growing our tribe at the next Diabetes UnConference in Atlantic City in September and being completely insane again.

Happily insane.

 

 

 

 

Floating…

It’s been quiet around here at the blog, but I’m not being quiet in other places. Lots going on and I’m happy with the way it’s all going… it’s just going at full speed most of the day (and night).

Zero complaints, because truth? I love my life right now. As I texted with Heather Gabel earlier today, the only way I can describe it is: “happily terrified.”

Here’s some things I’m involved with or care about… in no particular order.

The Diabetes UnConference Las Vegas 2016

IMG_6147Crunch time. Registration is still open, but we’ve got a only a few spots left for attendees. To think that in less than 30 days, I’ll be in Las Vegas with some of my most favorite people in the world – and that I’ll get to meet more new favorite people, well… swoon.

These people are my tribe. They believe in peer support and the power it wields. I expect laughter and tears and new inside jokes as well as some old ones (#vegasdust, #claptwice). There’s a lot to do between now and then.

The Diabetes Pre-UnConference Sessions

The Diabetes Collective (the non-profit I founded in 2014) is hosting the Friday, March 11, 2016 Pre-UnConference sessions, which will be free and open to the public. The focus is diabetes, but not necessarily psychosocial – we’ve got Moira McCarthy Stanford sharing her ideas on how to put the fun in fundraising for diabetes research and a session on how not to lose your mind with diabetes. There’s much more; take a look.

If you’re in the area (or road trip!), join us. You can register here.

Diabetes Patient Advocacy Coalition

We held our first DPAC Insiders dialog this week and while I knew what we were planning to do in 2016 in terms of diabetes policy advocacy, talking about it makes me even more excited.

Bennet and I will be doing DPAC Diabetes Advocacy Boot Camps online and in person to assist passionate people in becoming effective advocates for diabetes policy. It’s certainly not the same as raising diabetes awareness or being an advocate for myself.

In fact, if you want to join us in person, you can register for one of two DPAC DABCs: at the Pre-UnConference session or at the CWD Friends for Life Falls Church. (You need to register!)

HealtheVoices 2016

043774-151123_HealtheVoices Application Announcement 1.25.16

This is the HealtheVoices Conference‘s second year and I’m honored to have been chosen to be part of the advisory team this year. For those who are online advocates of ANY health condition, this is an amazing and empowering experience. I learned so much about other health communities and a little about how I view myself as an advocate.

Here’s my recap of the 2015 conference. Worth a gander.

If you are on social media (have a blog, Twitter following, Instagram groupies) talking about a health condition, I encourage you to apply. While I can’t publicly talk about them yet, the keynote speakers and the sessions are going to rock socks off.

This year, it’ll be in the Windy City (a.k.a. Chicago).

The application deadline is February 22, 2016. Don’t wait until the last minute!

Please note: Janssen Global Services paid for my travel expenses for the conference in 2015. I am being compensated for my time and travel expenses in 2016. All thoughts and opinions expressed here are my own. 

Still Pump Breaking

I’m tinkering. Experimenting. The lows are significantly better because I reduced the Tresiba dosage. I’m having issues with the nano pen needle length (insulin is leaking out, despite keeping the needle in long enough for it to do its thing) and I’ve got my pharmacy special ordering syringes with half-unit dosing. I appreciate the DOC for commenting and sharing their thoughts, tips, and suggestions so that I can have an alternative to insulin pumping. You all rock.

And Everything Else

You gotta read this. Biohacking. Whoa.

But as far as I go..

  • There’s stuff percolating with PatientsLikeMe.
  • Still doing interesting things with the Diabetes Advisory Council.
  • I signed up to run my first 5K in May.
  • There’s upcoming trips to DC and Tweet-Ins planned soon.
  • I’m using this to get a lot of writing done (everywhere but on this blog, it seems) to cut down on the noise in my head.

 

And then there’s these goofballs, who keep me grounded…

even when I’m floating.

Selfies with goofballs. It's like dancing with wolves but without dancing. Or wolves. I love these two.
Selfies with goofballs. It’s like dancing with wolves but without dancing. Or wolves. I love these two.