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Posts from the ‘Diabetes Online Community’ Category

Entering the Mancave.

There are issues we talk about openly in the diabetes community – tips on how to wear a pump, resources for good diet and nutrition, exercise goals, frustrations with blood sugar control, research, and on and on.  All of these topics matter because they play a role in diabetes management, and life as a whole.  But some of these topics are easier than others.  It can be easy to say, “I suck at counting carbs and I need help!” but it’s another discussion entirely to give voice to, “I’m dealing with reproductive issues and I need support.”

Those personal issues need discussing as much as the topics like counting carbs.  Complications are delicate.  Fertility is delicate.  Sexual issues are delicate.  Depression is delicate.  These topics are raw and riddled with social stigma, but they need unpacking.  Otherwise, they get heavier, already heavy all their own.

I remember when I first read about a woman who had given birth after decades with type 1 diabetes and it soothed a panic in me that was there for years, that idea that motherhood was beyond my grasp.  It was a moment, a good moment, that helped change the course of how I approached becoming a mother.

But I also remember the first time I found stories from people in their 20s and 30s who were dealing with diabetes-related complications.  This moment was good in a completely different way.  My diagnosis of macular edema in 2013 generated more than just a new medical condition to manage, but stirred up all these feelings of failure, guilt, and blame … a deluge I wasn’t really prepared for.  These emotions aimed to drown me.  I wanted to hide.  I had very dark, very uncomfortable thoughts that took me away, in a sense, from my friends and family.  I needed support, and am grateful that I found it.  Conversations with peers about dealing with complications at a point when I still felt young but realized how many decades of diabetes I’d logged helped me get through the initial diagnosis and kept me on the path of taking care of myself in order to preserve and protect, but also to continue living despite this new diagnosis.

“Me, too!” stories can help do that.  They confirm that you aren’t alone in what you’re dealing with and that there is support and camaraderie available even in the darkest of times.

I wanted to share a new website called The Diabetes Mancave, created by a writer who has decided to remain anonymous but not to remain silent, and his website is hosting discussions about the topics of male infertility, retrograde ejaculation, and erectile dysfunction, among other things.  From the site:

“You’re not going find my real name here. That’s because this isn’t something I am comfortable sharing online with these issues, because they are very personal and not something I’m comfortable letting everyone tie to my name.

But that aside, this also isn’t about just me. It’s about these issues, and the larger point of how so many men who may be experiencing these, just don’t share because they aren’t comfortable talking about them.

… In a Diabetes Community where we so often tell each other “You Are Not Alone,” I certainly do feel alone.

I’m hoping the D-Man Cave can help remedy that, to some extent. Because I don’t want to keep this in anymore, and I don’t want to feel so alone.”

Discussions and blogs (and Twitter profiles) like his are long overdue.  I’m really sorry you’re dealing with these issues, Diabetes Mancave guy, but I am so, so grateful you are putting them out there.  I hope you find community and support because by putting your story out there, you’re potentially providing a life preserver for someone else.  Thank you for being brave, and encouraging others to be brave, too.

The Emerging Diabetes Online Community.

I’m really proud of this paper, The Emerging Diabetes Online Community, written with Marisa Hilliard, Jeff Hitchcock, Tamara Oser, and Korey Hood, about the diabetes online community and the importance of peer-to-peer support between patients on the Internet.

The official abstract: “Diabetes self-management is complex and demanding, and isolation and burnout are common experiences. The Internet provides opportunities for people with diabetes to connect with one another to address these challenges. The aims of this paper are to introduce readers to the platforms on which Diabetes Online Community (DOC) participants interact, to discuss reasons for and risks associated with diabetes-related online activity, and to review research related to the potential impact of DOC participation on diabetes outcomes.”

There are a lot of friends and colleagues mentioned in this paper, like Children with Diabetes, Scott Johnson, Diabetes Mine, Texting My Pancreas, the CGM in the Cloud group, and several others.  Actually, that’s one of my favorite features of this paper, noticing how many of these resources are created and maintained by people I consider friends.  Speaks to the true connectivity of the Diabetes Online Community and how what we provide for one another is hard to quantify but easily recognized as “important.”

It continues to amaze me, seeing how much this community has changed and grown and evolved since I ventured online ten years ago.

To download the paper, you can click on this link and the PDF is free.

Flick of the Wrist.

In the interests of getting through TSA in Orlando as quickly as possible and making my way over to my gate so I could find some iced coffee and a banana, I disconnected my insulin pump and put it through the x-ray machine, caring very little if it melted in the transaction because I was melting in the transaction.

The tram to the gates was arriving just as I was finished at security, so I grabbed my pump off the tray and held it in my hand. dragging my bag to the shuttle. Just after “stand CLEAR of the closing doors,” I reached around to the top of my hip and reconnected my infusion set, sticking the pump into my pocket.

A woman boarded the tram, her infant daughter strapped to her chest. I noticed her noticing me while I reconnected my pump.

“Insulin pump?”

“Excuse me?”

“Is that an insulin pump? Sorry – my son has diabetes and I recognized the pump.”

“Oh, yes.” I searched her wrist for an orange or green CWD bracelet but didn’t see one. “Were you here for the conference?”

“What conference?”

“The diabetes conference. It’s called Friends for Life and it’s put on by an organization called Children with Diabetes. It takes place here in Orlando, over at Disney.”

She smiled. “I’ve never heard of it, and I live right here in Orlando. What’s it called?”

“Friends for Life. It’s a diabetes conference for families with diabetes. Lots of kids with type 1 attend with their parents, and lots of adults like me who go to connect with other adults who have diabetes. It’s really nice, like diabetes camp. Community helps, you know?”

She nodded, and the baby on her chest flapped her arms happily. “My son goes to camp. He loves it. But I’ve never heard of the conference before.”

I reached into my bag and fished around for a pen. Nothing. Checked my pockets for a business card. Nothing. The tram was about to stop and ditch us at the gates, leaving me just a few seconds to try and explain how a few days in Florida can change your life for the better.

“What’s the conference called again?”

I grabbed the edge of my green bracelet and pulled it off my wrist.

It's on. #ffl15

A photo posted by Kerri Sparling (@sixuntilme) on

“I know this seems weird to hand you a slightly-used conference bracelet, but the URL for the conference website is on it. Everyone who has diabetes wears one of these green bracelets. You see one of these and that person understands, you know?” I handed her the bracelet, pointing at the website address. “I hope this doesn’t seem creepy. It’s just an amazing experience, being around all of those other families, and it would be great to have you and your family check it out, if that’s your thing.”

She took the bracelet and put it in her pocket. “This is very nice of you. Thank you. I’ll check it out for sure.”

The tram doors opened and we stepped out.

“Where are you headed home to?”

“Rhode Island.”

“And you come here just for that conference?”

I thought about the week that had just passed, when I was surrounded by people who redefined family.

“All the way here. Green bracelets are pretty awesome.”

She waved, and her baby waved, too. “Thank you for passing this along. Safe travels back home. Maybe we’ll see you next year.”

Usually when I board the plane home from Friends for Life, I like to look down at my green bracelet because it reminds me of my PWD tribe.  This year, with a flick of the wrist, I was grateful it had found a new home.

What Are You Advocating For?

A discussion from Masterlab at Friends for Life:

Some answers:

My answer:

What’s yours?

Pump Peelz Giveaway Winners!

Time for the Pump Peelz Giveaway winners!  The original contest rules are from earlier this week are here, and the entries came in through blog post comments and Twitter. Some were poignant, some were silly, and all were written by people touched by diabetes.


Ahem … here we go.

All were so awesome
Random number thing picked three.
These are the winners:

It’s midnight again
Sugar monsters sucking life
Double-stuffs for win!

- Susan C.

Diagnosed last year
The only thing he can’t do
Is make insulin

- Maria Conroy


Winners!  I’ll be connecting you with Scott from Pump Peelz to receive your prizes, and for those who didn’t win, you can still use the “SixUntilMe” discount code at Pump Peelz for 15% off your order. Thanks for playing, and thank you so much to the team at Pump Peelz!!!

Diabetes Connections, with Stacey Simms.

There’s a new podcast on the … block?  On the radio?  The Internet.  It’s definitely on the Internet.  And it’s brought to our community by one of our own – Stacey Simms, mom of a child with type 1 diabetes and a professional broadcast journalist.  In her new podcast, Diabetes Connections, Stacey is bringing those two passions together to inform and inspire the diabetes community through discussion. 

Today she’s offering insight on what brought her to the DOC, what inspired the podcast, and what’s to come for Diabetes Connections.  [And if you'd like to check out the latest episode of her podcast, it features me!]

Kerri:  Stacey, you’ve been involved in the diabetes community for several years now. Can you tell me a little bit about your personal connection to diabetes?

Stacey Simms:  My son was diagnosed with type 1 in 2006, just before he turned two. It was a shock, of course, and our lives turned upside down for a while. Luckily, I did know a few people through our local JDRF chapter. The radio station where I worked was the big sponsor for their golf tournament every year, so I had actually interviewed families living with diabetes and I had people to call when we got home from the hospital.

I started blogging in 2007 because my listeners were asking questions and, while I could have talked about diabetes all day long, Charlotte’s Morning News wasn’t that kind of show! The blog became a very healthy and necessary outlet for me. It also led me to the incredibly helpful diabetes online community, for which I’ll always be grateful.

Kerri:  And how about your connection to broadcast journalism?

Stacey Simms:  I’ve been in broadcasting since before I graduated from college, working weekends at an all-news radio station. I went on to a career as a TV anchor and reporter and hosted a morning radio news show for a decade. We were the News-Weather-Traffic station (you have one in your town) and did several interviews every morning on a variety of topics. It was always fun and interesting but it was exhausting. I got really tired of getting up at 3am to do morning drive radio while raising two little kids. There’s no describing how difficult that shift really is – but it’s absolutely the best time to be on the radio. I made a tough decision to move on and I left full time broadcasting. No regrets. It was definitely the right decision.

Kerri:  What made a podcast your medium of choice, and what makes your podcast different from the other health-related podcasts out there?

Stacey Simms:  I love to listen to podcasts because it’s exactly what I’m interested in, exactly when and where I want to listen.
Radio (and podcasting) is a very intimate medium. It’s just you and the listener, it should feel very one to one.  You almost develop a relationship with the best radio hosts; that host should be someone you feel you know, your friend you look forward to hearing each show. Even during an interview, the person who’s hosting is hopefully asking the questions you want to ask.
I love that about radio and about podcasting.

My podcast is different because of my broadcast experience. Throughout my career, my beat was always health and medical reporting. Those years of experience have given me a good mix of skepticism, hope and interpreting medical jargon (I speak doctor).

I listen to several diabetes-themed podcasts and they’re fun and conversational, but I find myself always wanting to hear more or to jump in with my own questions.

While I hope many people find this podcast entertaining and informative, I’m really doing it so I can have conversations with people I find interesting and learn about topics that I care about. I’m making a podcast I can’t wait to listen to. Sounds a little selfish when I put it that way!

Kerri:  What can people expect from Diabetes Connections?

Stacey Simms:  An interesting, engaging conversation each week. You’re driving to work or doing chores around the house. Let me keep you company for a half hour. You’ll learn something about a prominent person or issue in the diabetes community and hear about how other “ordinary” people are managing.

Diabetes can be a very isolating condition and connections empower us in a way that is a vital compliment to medical care.
My first guest, Christal Marchand Aprigliano, talked about the power of “me too.” I’m going to steal that for a moment. I want people to listen to Diabetes Connections and benefit from the power of “me too.”

Kerri:  That’s awesome.  And thank you for having me as a guest this week!  What other shows do you have on tap, and how can people sign up to be featured?

Stacey Simms:  I loved talking to you! As I said in the podcast, Six Until Me was one of the first blogs I found after my son was diagnosed and it helped me realize that while life would be different, it would still be great. That was a wonderful gift, so thank you!

Next week, I’ll be talking to Sierra Sandison who touched off the #showmeyourpump campaign last year by wearing hers in the Miss America pageant.  She’s just about ready to hand over her Miss Idaho crown. We’ll find out what’s next for her.
I’m also speaking with Laura Billetdeaux from CWD Friends for Life, the annual conference that’s coming up. You’ll find out how a question over a message board sparked the biggest diabetes family conference in the world.. and we’ll talk about what’s on tap for this year at FFL.

I also have guests coming up to talk about diabetes camp and about raising teens with diabetes.  Best way to reach me right now is through social media and at www.diabetes-connections.com.  I’m already getting requests and I would love to find out what more people would like to hear. Please let me know!

Kerri:  Thanks for taking the time to chat with me today, Stacey!  I’m excited to bring your podcast into my rotation on trains, planes, and automobiles.

Diabetes Connections is available where ever you get your podcasts.  You can find it on iTunes here (and Stacey would love to have you give her a review).  You can also find Stacey on Twitter @staceysimms, on Facebook, and on her blog.  The official podcast website is still under construction, but when it’s up and running in full, you’ll find it at Diabetes-Connections.com.  Good luck with this new adventure, Stacey!

 

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