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Posts tagged ‘TCOYD’

ONE Great Weekend.

Diabetes for 30+ years means you’ve earned a “legend” sticker.

“So what made you want to do the TCOYD ONE conference?” I asked the TCOYD team.

“We were sitting around one day having drinks and just said there is so much stuff coming out in the field of type 1 diabetes that we NEED to put on an event with the absolute best of the best speakers and invite every person with type 1 diabetes around the world who we can get the invite in front of,” said Dr. Steve Edelman, Professor of Medicine at the University of California San Diego and Veterans Affairs Medical Center.  He’s also the founder of Taking Control of Your Diabetes (TCOYD).  “Oh my god, the conference was an incredible weekend of palpable excitement in terms of learning the most up-to-date real information about managing diabetes but also the emotional outpouring was not anticipated or expected. Something I have never experienced in my personal or professional life.”

This is saying a lot, since Steve has been living with type 1 diabetes for almost 50 years.

Tricia Santos Cavaiola, MD and co-director of the TCOYD Type 1 Track, highlighted the differences between ONE and the other TCOYD conferences.  “The biggest difference with this conference was putting more emphasis on living life well with type 1 which is why we tried to make it a retreat in addition to the typical education component. Looking back on this weekend, my favorite part was just seeing how happy everyone was, from walking around the health fair, to huge turnouts at the group activity/exercise sessions, to laughing at the talks, to watching EVERY SINGLE PERSON walking around with a smile on their face. TCOYD conferences always leave me with a ‘feel-good’ feeling at the end, but this one topped them all.

Jeremy Pettus, MD (co-director of the TCOYD Type 1 Track), echoed Steve and Tricia, adding, “I think I’m just proud to have been a part in making it all happen!”

The TCOYD ONE conference that took place last weekend in San Diego, CA was nothing short of amazing.  PWD hanging out, learning from one another, and sharing their diabetes lives without hesitation or judgment is the kind of connection that benefits people’s emotional health as well as their blood sugar numbers.

Nothing leans into “good health” quite like “good friends.”

Ann Ryan Donahue, 46 years into her life with type 1 diabetes, said, “It was clear that this was a dynamic group of T1’s who have all learned to make something positive out of something negative … a room full of progressive, motivated, positive individuals with T1 … and what a great forum to share all the ‘tricks of the trade.’ This may rate as the ‘hungriest group begging for information’ that I’ve ever been a part of.”

I’ll second that completely.  In addition to giving a talk about my 30 plus years with type 1 diabetes, I lead two discussions about the mental/emotional health surrounding the issue of diabetes-related complications.  The stories that were shared in that room can’t be summed up in a blog post or a paragraph.  People were honest, and raw, about what they were dealing with or what they were fearing, and the connections in that room were instant and intense.  I could not be prouder of our community for coming together and talking about where their hopes and fears are rooted.  This is what it’s about for me; connecting with others in efforts to live big, and live well, diabetes be damned.

“It felt so great to be with so many people who understand and know how challenging life is with this condition,” said Julie Forsgren, living with type 1 for over 40 years.  And this was a theme among the attendees, the peer-to-peer connection between PWD.  “I loved how even the doctors and expert speakers were also type 1. It felt SO good to be among others who really get it! The food was a delicious bonus, too. It was so exciting to hear about the developments in improved technology from the CEO’s of the companies working on them. It was an inspiring and informative weekend full of impressive speakers. Such a great feeling of comfort and understanding being among my peers!

“When I looked up in yoga and realized that everyone in that space, at that moment was present with peaceful intentions AND diabetes, it absolutely took my breath away,” said Cynthia Celt, T1D for 20 years, about being part of the yoga group in the morning.  “It was one of the most awestruck diabetes moments I’ve ever experienced. There was no worry of a CGM alarming or the disapproving glances that sometimes accompany a yogi toting her phone into class. It was the first time I have ever felt 100% part of ‘the group’ rather than an outlier.”

Rachel Mercurio hadn’t ever met a person with type 1 diabetes “in the wild” before. “Words cannot adequately describe how incredible this weekend was for me. Before this conference, I didn’t know a soul who had T1 ‘in real life.’ Of course I knew other T1s were out there, but I have always felt like I was alone on an island. Hearing the CGM and pump beeps throughout the weekend was so comforting to hear. Warm, lovely people came up to me and introduced themselves to me. For the first time in my life, I was talking about diabetes without educating anyone about this disease, because you all get it. The presenters are true advocates. I knew this was going to be a great weekend, but I didn’t quite expect an impact of this magnitude.”  (And for the record, I had the honor of meeting Rachel and she’s a force.  And her neon yellow hair is awesome.)

It was called ONE but not because you’re the only one.  You’re ONE of many, and you are not alONE.

Thanks to the TCOYD for hosting this event, to Tandem Diabetes Care for sponsoring my keynote and breakout sessions, and to every person living with diabetes who came to find support, camaraderie, and the other ONEs like them.  See you at the next ONE!!

Good / Bad.

At the TCOYD / diaTribe forum at ADA last week, Dr. Edelman showed a video that he and Dr. Pettus had put together about the doctor and patient relationship, highlighting the good, the bad, and the ugly.  It kicked up some serious laughs from the audience because it’s uncomfortably true in many ways.

(My favorite line is at 2:38 – “By the next time you come back, I want you to have two new friends you can tell me about …”)

The Friday Six: Poutine Edition.

I have some very useful, informative links to share today, but before I do, I have to admit:  I don’t like poutine.  It looks like discarded fries that someone fished out of a garbage can.  My husband loves the stuff and is trying to convince me that it’s a delicacy, but I’m not converting.  Being in Montreal this week for the Canadian Diabetes Association conference has shown me that my opinion on poutine goes against the grain, though, and I should keep quiet about my disdain (even if it rhymes).  I wish I liked it, though, because it’s found easily on the menus up here.  What’s not found?  American cheese.  (Carey, Wade, and Sandy:  If you’re reading this, you’ll be happy to know I did not order American cheese on this trip.  I’ve learned my lesson.)

Okay.  Links now.  And this Friday, I finally have an actual “six.”  –>

  1. There’s another TCOYD conference taking place in a few weeks, this time in the ABQ.  If you want to break bad with the TCOYD team, you can sign up here.
  2. The Big Blue Test is taking place now!  All you need to do to participate is check your blood sugar, exercise, check again, and then share the results.  “Each Big Blue Test entry you log between now and November 14th triggers a donation on your behalf to nonprofit groups that are providing life-saving supplies, services and education to people with diabetes in need.”
  3. The mySugr Junior app is ready for downloading, and this kid-friendly version of the Companion application is gorgeous.  I’m looking forward to taking it out for an extending “revisiting my childhood” spin in a week or two, but for now, just wanted to make you aware that it’s available in the US, and looks awesome.
  4. If you’re in the Boston area, you can catch two fantastic writers (and advocates) at the BBF [Boston Book Festival] Unbound: Writing About Health session taking place on October 19th (this Saturday).  “Cheryl Alkon (author of Balancing Pregnancy With Pre-Existing Diabetes) and Laurie Edwards (author of The Kingdom of the Sick) will offer strategies for those looking to begin telling their own medical stories, including: how to combine memoir and personal narrative with research; how to navigate issues of translation and accessibility in medical writing; and insights about the importance of social media, whether to self publish, and what happens after publication.”
  5. Also, there’s a study taking place about diabetes and romantic relationships.  Here are the details: “Announcing the ROAD Study (Relationships of Adults with Diabetes)!!  Researchers at Carnegie Mellon University are studying how young adults with type 1 diabetes navigate romantic relationships.  If you are involved in a romantic relationship (dating, living together, married), are between the ages of 18 and 30, and have type 1 diabetes, you are eligible to participate in this 30 to 40-minute phone interview.  Please email Dr. Vicki Helgeson at vh2e@andrew.cmu.edu for more information.”  I’m not involved with the study, but am helping to pass along the research information.
  6. And this post, I love, simply for the last request that we “be gentle.”  Thanks for sharing this, Meri.  (Almost called you “Merci.”  Which stands, as well.)

 

Hypoglycemic Blues.

This past weekend, I was in Omaha (pronounced in my head as “OMAHA!!!!” almost every time), Nebraska for a TCOYD conference, joining in as speaker for the event.

One of the topics in OMAHA!!!! that we talked about was the integration of medical devices, sharing anecdotal stories about life with out diabetes-related robot parts.  Panel moderator Dr. Jeremy Pettus shared a video he made about how using a continuous glucose monitor, illustrating the difference between catching a low when you’re deep in the trenches of it (whoa, 49 mg/dL) versus catching it when it first starts (like 8o mg/dL and dropping).

The ways a CGM has helped improve my quality of life are becoming hard to count:  I feel safer when I drive, when I sleep, when I was pregnant, when I am traveling, when I eat new and strangely-carb’ed up meals … and now I’m more appreciative of how it helps keep me from over-treating those frigging overnight lows.

Thanks, Jeremy, for taking the time to explain this CGM benefit while sporting your pajamas.  Bold move, doctor!

Friday Six, Plus a Few.

We have more than six items here, but who’s counting?  (Me, and clearly not that well.)  Onward!

I have had this song stuck in my head for over two weeks, and a Doritos commercial is to blame.  The hitchhiking banana doesn’t hurt.

We need less than 200 signatures to hit the 5,000 mark on this petition to put diabetes on the FDA discussion docket.  Let’s push this one over the edge today!

diaTribe has an incredible article about the bionic pancreas on task at summer camp in this month’s issue.  “When teenagers are happily volunteering to do extra work, it’s safe to say we’re dealing with something special.”

Need a cute way of reminding yourself to change your lancet?  Lancet the Pug can help.

Watching this made me cringe, because I’m guilty of doing this sometimes, and also because that lady is left hanging on the high-five.

Pregnancy is beautiful. And a woman’s body remains beautiful after giving birth (despite society telling women that they need to shed the baby weight the day after having the kid and if they don’t, they are somehow ruined). This project is very cool.

Is healthcare America’s forgotten civil right?  Forbes takes a look.

Melissa writes about The Thicker Envelope this week, talking about the possibility of a celiac diagnosis in her household.  If you have tips and resources to offer, please do.

Unicorn cookbook?!

TCOYD has some conferences coming up this fall that you may want to check out.  The conference is coming to Worcester, MA in September and Omaha, NE in October.   While I’m sorry to be missing the Worcester (downright local, by New England standards) conference, I’m looking forward to visiting Omaha.

Chris Snider’s Just Talking podcast hits up the founders of A Sweet Life.

Thank goodness Sara(aah) took her sensor off at the 27 day mark.  She missed zombie-hood by one day.

Do you use at-home A1C tests?  Elizabeth takes the Reli-On version for a ride.

I follow kale on Twitter, and I can’t stop.  Example of why:

Can’t argue with kale.  Have a good weekend!

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