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Posts from the ‘SUM in Other Places’ Category

Returning to diaTribe.

After a long hiatus, I’m back at diaTribe and explaining where the hell I disappeared to:

“Diabetes is the dog I don’t like but I still have to be kind to. It barks and occasionally pees on the floor (or worse), it has chewed up at least ten of my shoes, and it jumps up and freaks out whenever the doorbell rings. And somehow it has me on a short leash. But even if I’m not into having this dog, I still have to walk it and feed it. It still needs to be cared for and protected. I am its reluctant owner, but at least it behaves when it has my attention. When it’s well-groomed and attended to, it doesn’t bite me. And becoming a parent meant I needed to protect my children from the beasts in my house (with diabetes falling into that beastly category).”

More of this column over at diaTribe, and keep up with all the news by subscribing to the diaTribe newsletter.

ConnecT1D Retreat.

Until a few months ago, I didn’t know much about the peer-to-peer support and family connection accomplished by ConnecT1D.  It wasn’t until Susan Horst reached out to me to see if I was available to visit for their ConnecT1D retreat that I was thrown into their world of the powerhouse diabetes outreach taking place in the Pacific Northwest.

Susan Horst, project manager at ConnecT1D, shared her personal story over at A Sweet Life, shedding light on what brought her into the diabetes space in the first place and what keeps her here.  She was tasked with organizing and launching the first ConnecT1D Retreat and it was an event that both inspired PWD and ignited friendships. Joe Solowiejczyk and I were charged with facilitating discussions and delivering the keynote addresses, alongside Jody Stanislaw, Cassady Kintner, and other speakers touched by diabetes.

The Facebook group for this event was a little quiet before the retreat, but after everyone had a chance to connect, discussions started to blow up (in a good way) in the threads.  People were reconnecting, firming up plans, and sharing photos of experiences with new friends.  It was awesome to watch the group transition from “functional” to “frigging unstoppable.”

Jo Fasen, an attendee with T1D, said, “[The] ConnecT1D Retreat created a wonderfully unique opportunity, offered no where else that I am aware of, to connect in a safe, fun and friendly environment. Everyone could share in their own way and we learned from everyone while the speakers addressed serious issues and concerns with humor and humility. Memorable, compelling, impactful are only some of the words to describe this experience … and I don’t know anyone that won’t be back next year.”

Julie Schliebner said, “To connect with others sharing in the same struggle was invaluable to me. When I feel less alone and understood I am able to ride the roller coaster with greater self compassion. I am so grateful to ConnecT1D and each attendee. I really look forward to more time with this community. I want to attend every single year!”

Jim Cheairs chimed in with two things:  “I understand that I don’t have to live with T1D in a vacuum and I am in the process of ordering a CGM … [a] Dexcom, which is a result of info gleamed from others at the retreat.”

“The retreat aspect of the weekend is what made it the best ever,” said John Highet.  “Saturday’s conference was great – don’t get me wrong, with really good talks and really good participation & interaction.  But the real connecting didn’t start for me until the walk to the ferry with Brandon and Brenna VanDalsen and didn’t end until the ferry ride back to Seattle with David, Patricia, Alex, and Joel. In between were connections with many more, enjoying the sun and resort, just hanging out, and some inspiring, vulnerable and emotional small group breakouts on Sunday. It will be hard to top this, but I will be there whenever it happens.”

“For the first time in my life I felt like I wasn’t alone with type 1 diabetes,” shared Lauren Sorteberg.  “Connect1D was amazing and the speakers were down to earth and real! It shaped me in more ways than I could have imagine! It was an emotional, eye-opening experience.”

Diana Cheairs brought some spousal perspectives, attending the retreat with her husband (who has type 1 diabetes).  “I missed the first day so I didn’t know I am a T3 [person who supports a PWD]. All the T3 met outside by the beautiful willow tree. Looking around at all of us, many of us realized that we had never spent any time with other spouses of T1’s. Most of us had never even met another spouse of a T1.  Wow , that was weird to realize that in the 20 years out of 38 years that Jim and I have been together I had not spent any time with a T3. I shared things with the group that I have not shared with others because those others would not have understood.”

Access to sound and reasonable medical advice is necessary for a healthy life with diabetes, but peer-to-peer connections are just as essential.  Sitting with a group of people who understand the intimacy of diabetes, both emotionally and physically, can be a powerful healing and dealing strategy.  I’m grateful to have had the opportunity to visit the ConnecT1D group and see the power in their collective stories.

Attendee Tracy Wu summed it up perfectly:  ” It was such a great weekend for my mental well-being and gives me more oomph to face tackling diabetes for another 32 years!!”

Traveling with Diabetes.

Over on the Tandem website, there’s a new bit about traveling with diabetes (that I helped craft up), and that went live this morning.  You can read more here:

But it made me think about my travel experiences this past weekend (I was in Seattle for the ConnecT1D retreat – more on that in a few days, as I’m waiting for some input from the group out there), where diabetes was not at the top of my concern list, and yet I still spent some quality time with the TSA agents.

Most of the time, the issues at TSA screening points are minimal.  There are moments when discussions get a little combative or feel intrusive, but I’m not the most comfortable flyer, so it’s kind of par for the whole travel course.  (As in, everything makes me twitch.)  This past weekend, I was pulled at the Seattle airport for extra screening because my bag tested positive for explosives.

This resulted in having everything screened with an extra level of scrutiny, including but not limited to the TSA agent unfolding all of my dirty laundry (actual dirty laundry, not metaphorical) and inspecting it.  Made me feel weird that I folded all of my dirty clothes before packing them and also grateful that I didn’t accidentally bring something dodgy on my trip (waves giant exploding sex toy).  My bag kept flagging as an issue, to the point where they spent 20 extra minutes examining everything in it, from my laptop to my phone to the hair brush at the bottom of my backpack.  They even took a good look at my baby, who was kicking wildly at the inconvenience and making his presence visibly known.

“It might be your curling iron,” the TSA lady said, putting it in a bin and sending it through the x-ray screening for the second time.

“Maybe,” I said, wishing they’d give me my shoes back so I wasn’t toes’ing all over the highly trafficked airport floor.

“Your baby seems amused, though,” she said, watching my stomach undulate underneath my shirt.

“Yeah, he would prefer I visit the bathroom soon,” I said, while my son bounced around on my bladder.  “But he’s definitely amused.”

40 minutes later, the agents concluded that I was not a threat and that my items all cleared.  The agents barely looked at my pump and my CGM was a blip on their radar.  I was sent on my merry way, realizing after a few waddling steps that diabetes played a role of ZERO in my TSA hold-up.  Which was a weirdly nice change of pace from the “Excuse me, miss – is that a pancreas in your pocket?”

Link Love.

My inbox was not properly maintained while my daughter was on school vacation last week (but let’s be honest – when is it ever properly maintained?), but I’m taking a crack at catching up.  I wanted to share a few bits and pieces that were interesting to me, and might be of interest to you.

First, this:

Okay.  Now links:

  • “Diabetes sometimes feels like the ultimate roller coaster: ups and downs, no idea what’s around the corner, and moments where I fear for my life. Part of that ride is an incredible emotional and mental balancing act …”  Read more from diaTribe‘s Adam Brown in his informative article, The Diabetes Emotional Rollercoaster.
  • “Maybe,” he told me, “you could do a better job of managing his diabetes at night.”  A dentist runs commentary on one mom’s diabetes experiences over at A Sweet Life.
  • Tom “Diabetes Dad” Karlya joins the Diabetes Patient Advocacy Coalition to share the success of Reegan’s Rule in North Carolina as a precedent for other states.  You can find more information for the April 28 webinar here, and you can register here.  Tune in at 12 pm eastern on April 28.
  • This weekend, out in Dallas, TX, is the TypeOneNation summit, and I’m excited to be rolling my pregnant self out there for the conference.  “The TypeOneNation Summit is JDRF’s signature educational event for people with type 1 diabetes (T1D), their families and friends.  Join other individuals, families and caregivers affected by T1D at all life stages, for a day of education, inspiration and connection.”  For more information, check out the details here.
  • Also coming up is the DREAMS in the City silent auction, benefitting the Diabetes Research Institute.  Check out this link for more information on the NYC event on May 5th.
  • The DiabetesMine Patient Voices contest is up and running again this year, and applications to receive a scholarship to attend the Innovation Summit are open for the next month, so consider applying!  More information on the summit can be found here.
  • The team at Lifescan recently shared their KnowMyCopay.com site, which aims “to help you discover which brand of test strips has the lowest co-pay.”  I wasn’t able to find my health insurance provider on the list (I wanted to know if strips other than Lifescan’s would pop up as a result, considering the source), but I’m hoping that this site can be of service to folks who are trying to figure out how to make sense of the insurance hoops they have to jump through for decent diabetes care.  In any event, I appreciate something that aims to make life easier for consumers/patients/PEOPLE.
  • And lastly, but not least(ly), I wanted to extend an invitation to folks in the Pacific Northwest to a really cool event taking place June 25 and 26th in Seattle, WA – the ConnecT1D Retreat.  I feel that the psychosocial influence of diabetes is under-served and frankly, under-valued.  We, as PWD, don’t want a frigging pity party, but there needs to be care taken of our emotional and mental well being; it’s just as important as our physical self.  Whole-person care starts with conferences like the ConnecT1D Retreat, and I encourage people touched by diabetes to consider registering.  (Besides, you can hang out the absolutely amazing Joe Solowiejczyk, and I’ll be drafting off his brilliance all weekend.)

And now we dance.

Meme’d.

The team at Disney’s T1D Everyday Magic asked for some meme’ry from some folks in the community.  Here’s mine.  (And you know how I feel about cupcakes.)

Check out the rest, and for more T1D Memes, there’s a whole awesome site.  🙂

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