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Posts tagged ‘community’

May 26

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Guest Post: What FFL Was Like as a First Timer.

Wondering what it’s like to be surrounded by thousands of people affected by diabetes?  Today, my fellow Friends for Life faculty member and longtime family friend, Scott Johnson, takes over SUM to share his experience as a first-timer at FFL back in 2010.  

Scott was diagnosed with type 1 diabetes back in 1980 and has been blogging about his experiences since 2004 over at Scott’s Diabetes Blog.  Today, he’s an integral (and huggable) part of the diabetes online community, working tirelessly as an advocate and also as the US communications lead for mySugr.

(And if you’re looking to connect in person with like-pancreased people, you can register for Friends for Life here.  Or, if July in Orlando is not your thing, there’s another conference in Falls Church, VA that might hit the mark for you.)

  *   *   *

As soon as I arrived at the hotel, I started noticing people with diabetes stuff around the hotel. A Dexcom sensor or OmniPod pump on their arm. Maybe a diabetes-related t-shirt. A used test strip. I was gawking at everyone! Rubbernecking my way from place to place as I walked around the hotel. It’s so uncommon to see people like me out in the world, but at Friends for Life, it’s the norm, which is a very powerful experience.

And when it comes to powerful experiences, Friends for Life has plenty to offer. One of my favorite moments was walking into the big breakfast room for the first time. By dumb luck, I picked a corner door and walked inside. That moment stopped me in my tracks.

I was stunned by how massive the room was. I couldn’t see everyone because it was too big. The other side of the room felt lost to the curving horizon line of the earth. And it hit me, suddenly, that everyone there was there for me. Well, not me, exactly, but “me” as in type 1 diabetes. I’d never seen so many people together specifically for type 1 diabetes before I’m my life – and I’ll never forget feeling so amazed, so grateful, and so ready to drink it all in. It tugged on some heartstrings I hadn’t known were there. I’d found a family I didn’t know I was missing.

Friends at Friends for Life

photo credit: Jeff Hitchcock

The whole conference was extremely emotional for me. Seeing little ones with diabetes knowing they’ll grow up with a better experience than me thanks to Friends for Life made me so hopeful and happy for them. But knowing they’ll know the shitty sides of diabetes too made me want to hug them and cry.

Some sessions were presentation style with slides, others were small group sessions offering a safe place to vent about tough topics with others in similar situations. There were different tracks to choose from, depending on interest, relationship to diabetes, age group, and more. I bounced around from session to session and was impressed by all of them. Jeff, Laura and the FFL team pull together an impressive roster of faculty members and volunteers to make magic happen. It was the first time in my life where I could listen to a famous doctor or scientist that I’d only read about give a presentation one hour, then find myself visiting with them later that day somewhere else in the conference. It felt surreal in so many amazing ways.

And then there’s simply sitting with a group of PWDs for hours and commiserating about some situation that we’ve all dealt with or just laughing the night away and talking about everything but diabetes.

It’s hard to describe the level of understanding present at Friends for Life. I remember listening to Rick Philbin give a talk about insulin pumps and exercise, and as he’s up at the podium he described the subconscious urge to check his pockets for glucose tabs every time he programmed a correction bolus out of fear for going low down the line. I was like, “whoa… he can see inside my soul..” but I’d never been able to articulate that subtle fear! And then there’s the story of getting to play basketball with Rick and Gary Scheiner – an awesome experience – until they got into a “discussion” about the score. That’s a day I’ll never forget!

And stay tuned for another guest post all about eyes …

I have to acknowledge Roche Diabetes Care’s huge roll in my first Friends for Life experience. They invited me to the second Roche Social Media Summit and hosted the event at the same location as the Friends for Life conference. This reduced some of my out of pocket expense (airfare) which made it possible for me to attend. That small logistical favor changed my life in so many ways. I’m forever grateful.

  *   *   *

Thanks, Scott.  See you in a few weeks!

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Aug 5

9 Comments

Panel: Challenges in Healthcare Leadership.

Yesterday, I took part in a panel discussion at the Executive Master of Healthcare Leadership Class of 2017 Convocation at Brown University (say that three times fast … I sure as hell can’t) and part of our discussion was about leadership in the healthcare space.

My fellow panelists were folks who were employed in the healthcare arena (Michael Hudson, EVP of Blue Cross Blue Shield, Secretary of the Executive Office of Health and Human Services Elizabeth Roberts, President and CEO of Care New England Dennis Keefe, Director of Alnylam, Ironwood, Momenta Pharmaceuticals Marsha Fanucci … and me), and I thought about who I work with:  medical device companies, diabetes advocacy organizations, magazines, publishers, etc.  I like the work that I do and I like the organizations I work with.

But, but, but.  Who do I work FOR?

The people I work for are people touched by diabetes, and to be honest, that starts with me and my family.  (My oxygen mask on first, right?)  One of the attendees yesterday asked me what kind of advocacy work I did as a kid with diabetes, and I admitted, “None.  I decided to get involved when I was in my mid-20s.  Before that, I didn’t do much at all in terms of diabetes advocacy.” It took time for me to grow into a desire to connect, and that desire was driven by isolation.

I joined this community because I didn’t know anyone in my day-to-day who was dealing with diabetes.  That absence of community drove me to seek out my peers and find people with whom I could be weird together.  And now this community of like-pancreased people can lean on one another and learn from one another in ways and about things that healthcare professionals aren’t able to provide.

Spent some quality time yesterday with the EMHL class of 2017 at Brown University. #rhodypride

A photo posted by Kerri Sparling (@sixuntilme) on

I spoke about the positive influence of patient communities a lot yesterday.  When discussions turned to the silos of healthcare and the dissemination of information, I advised people to take cues from patients who are sharing their stories online for a how-to.  “If you want to see information that’s crowd-sourced and self-policed, hopefully without a whole bunch of egos and competing interests, the online patient communities can give you some tips on how it’s done.  It’s not medical advice but it is honest and shows what illness looks like in the wild.  Patient communities take information from medical teams and integrate it into real life, with better health outcomes as the goal.  And that’s what we all want, right?”

Discussions about “what makes a good leader” took up the better part of the afternoon discussion, and I leaned heavily on bursting the bubble of privilege.  “My job as a voice in this community is to recognize what I have access to and what others are striving to gain access to.  My refrigerator is stashed with bottles of insulin, while some of my fellow people with diabetes are panicked about where their next injection will come from.  I need to remember that and raise their voices, whenever I can.”  (See also:  Spare a Rose.  See also also:  CGM Medicare Coverage.  See thrice-so: DPAC)

I’m hopeful it was an interesting panel discussion to listen to; I learned a lot by listening to my fellow panelists.  Secretary Roberts repeatedly voiced concerns about the different factors that play into health (socioeconomic, literacy, etc) and urged discussions about improving society’s views on proactive health efforts instead of reactive ones.  Dennis Keefe voiced hopes for true universal healthcare and how we can transition to that system most effectively.  Michael Hudson made an excellent point about throwing bias and stigma aside when communicating with one another; we aren’t just “the insurance guy,” or “the patient.”  Each panelist brought their unique flavor to the discussion, and I did my best to inform this EMHL about the crucial need for input from patient perspectives.

One of the other panelists mentioned that high deductible insurance plans force patients to have “skin in the game,” but I’ll counter that being responsible for paying doesn’t give us skin in the game.  We’ve always had skin in the game.  Now we have a voice at the table, and it’s high time we raise it for the betterment of our communities.

I’m proud to work with diabetes organizations, but I’m prouder still to work for people with diabetes.  This community, and all perspectives in it, have improved my life and my health in ways I’ll spend the next few decades gratefully and respectfully repaying.

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FFL: Social Media as Part of the Prescription. Power of Patient Communities. Partnering for Diabetes Change.

Jun 4

Interview: Anna Norton on the Future of Diabetes Sisters.

Organizations that bring people touched by diabetes together have a special place in my heart, because peer-to-peer support checks that “whole person care” box on the mental diabetes management to do list.  The Diabetes Sisters organization is a group that brings women with type 1 and type 2 diabetes together in an environment that fosters open discussion, camaraderie, and learning.  Today I’m talking with Interim CEO Anna Norton, who is helping transition the organization into a new era.

*   *   *

Kerri:  Thanks for taking the time to talk today, Anna!  We’ve known one another a long time, and you’ve been part of the Diabetes Sisters organization for years.  Can you tell me a little bit about how you got involved with DS?

Anna Norton:  Thank you, Kerri, for taking time out to interview me! I initially became involved with DiabetesSisters in 2011, when I attended my first Weekend for Women Conference in Raleigh, NC. That was the first time I had ever experienced being in a room with 99 other women with diabetes. I never realized how much I needed their understanding and support until that weekend; before that, I just managed on my own. Following that event, I was asked to join the planning committee for future conferences. In 2012, Brandy asked me to join the DiabetesSisters’ staff full time as Operations Manager, where I oversaw the National PODS Meetup program (our monthly support group meetings), the Weekend for Women Conference Series, online contributors, and other programs. Over the last four years, I’ve gotten to know so many people with diabetes, so many “movers and shakers” in the diabetes community, including you!

Kerri:  What is your personal connection to diabetes?  How does your personal experience color your involvement with Diabetes Sisters?

Anna Norton:  I was diagnosed with type 1 diabetes in 1993, when I was 18 years old. Initially, I had a few years of okay management, followed by years of noncompliance, depression and poor medical care. Eventually, I faced the reality that diabetes was controlling me and holding me back. Once I realized that, I was able to make changes in my management, starting with finding a new endocrinologist and going on a pump. Then I fulfilled my personal dream of getting married and having a child, which so many people told me I would never be able to do.  It’s been 15 years since I “transformed” my diabetes care and I’ve never looked back. Over the years, I have met so many women through DiabetesSisters, all at different stages in their diabetes care. I see myself in so many of them: a younger version of myself struggling to figure out how diabetes plays a role in her future, a mom managing both diabetes and a young child, a professional figuring out how diabetes will affect her career. I am inspired by every woman I meet living with diabetes, thriving with it, each with her own story of success. It’s important to me to have these women in my life, to support and guide me, and in turn, for me to do the same for them.

Kerri:  With Brandy leaving the organization (and she will be missed!), how do you see yourself stepping up and taking charge of this amazing group?

Anna Norton:  Brandy really did an excellent job in building a strong foundation for DiabetesSisters and for that, we are grateful. Over the last three years, she and I teamed up to create more programming to serve our online population and train more women to lead our PODS Meetups – monthly support groups that meet in over 30 cities throughout the US, including an online meetup. Over the years, Brandy entrusted me with the care of DiabetesSisters on so many levels, all the moving parts became very familiar to me. When Brandy decided to step down, the Board of Directors asked me to step into the Interim CEO role and continue the work. In my new role, I have the opportunity to meet supporters and funders that have helped shape the success of DiabtesSisters, and I get to share our member stories with them, as well as represent their needs. It’s important our funders to know how much their support helps change lives.

Kerri:  What are you most excited about, as CEO?  What scares you the most?  And how can the DOC help as you transition?

Anna Norton: I am definitely excited about continuing on this great path, growing our programs and services, adding more topics to our webinars, and reaching as many women as we can. I’m excited about adding some services for underserved populations, such as African American and Hispanic women. I have a busy summer ahead of me, representing DiabetesSisters at various conferences. The biggest challenge, though, is our small staff, although we’ve had some key volunteers step up to plate to help out, which is fantastic! During this time, I’d love for the DOC to reach out to me, introduce themselves virtually or in-person, and learn more about how the organization can serve them or ways we can partner up to impact more lives. I’d love to see women in the DOC step up as leaders and create more PODS Meetup groups in their communities, share their stories with the community through our website blogs, and provide online support through their own blogs.

Kerri:  Will the PODS meetings still continue?  How about regional conferences?

Anna Norton:  Of course! We just completed a weekend Leadership Institute for our PODS Leaders, which focused on more training for them. This program is, by far, our largest in-person, serving over 1,200 women annually, with a balance of education and support once a month.

Our national Conference Series – Weekend for Women, along with the Partners’ Perspective Program – is still alive, although we took this year off to focus on the Leadership Institute. It’s always a challenge with limited funds, so we’ve tried to provide the best programming in 2015.

Kerri:  What’s next for Diabetes Sisters, and how can the DOC get involved?

Anna Norton:  Our future is bright – and I’m glad to be a part of it. This is a time of continued growth for DiabetesSisters, and for all diabetes-related organizations. There’s so much to learn, so many treatments to trial, so much support to be provided. The DOC can move mountains with its influence, and encourage their audience to learn more about DiabetesSisters, read our website (www.diabetessisters.org), subscribe to our e-newsletter, listen to our webinars, and most importantly, get the word out about how we are a one-of-a-kind organization focusing on the emotional and social well-being of all women living with all kinds of diabetes.

Kerri:  Where do you see Diabetes Sisters in six months?  A year?  Five years?

Anna Norton:  That’s a great question! I definitely see DiabetesSisters continuing on the path of growth. With a great Board of Directors leading, there’s no doubt that will happen. In the near future, we will continue to build upon the foundation that is set, growing existing programs, trialing new ones, listening to our members and providing for their needs. Over the course of the following years, I see great partnership being forged with other organizations, maximizing our potentials in the diabetes support world. Eventually, I envision DiabetesSisters as the go-to for women living with diabetes to learn more about every stage of life including the years of young adulthood, relationship, pregnancy, parenting, peri-menopause and beyond, advance duration, etc.

Thank you, Kerri, for allowing me this opportunity, for being a DiabetesSisters’ cheerleader and for giving so much of yourself to the organization. I am excited to expand my role in the DOC and contribute to the support of our community!

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May 6

4 Comments

A Look at Diabetes Blog Week, With Karen!

Karen Graffeo is a talented knitter, devoted cat owner, and tireless advocate for diabetes, and I am so proud to call her a friend.  Six years ago, she launched the first Diabetes Blog Week, an effort that serves to expand the diabetes online community and embrace the beauty of diversity of voices.  Today, Karen is sharing some of the how’s and the why’s of Diabetes Blog Week here on SUM.

Kerri:  Congratulations on the sixth annual Diabetes Blog Week!!  For those who aren’t familiar with what it’s all about, can you shed some light?

Karen:  Thank you, I’m so excited to be doing this a sixth time!  Diabetes Blog Week was inspired by a similar event in the knitting blog community.  There is a set topic each day of the week, and participating bloggers write about that topic on their blog.  There is a list set up for each day and bloggers add the link to their post once they’ve published it.  Then we can all hop around the DOC blogosphere and read the different perspectives on each topic.  And, in the process, we can find some new blogs to read and make some new connections.

Kerri:  Is it tough to come up with topics every year?  Where do you draw your inspiration from?

Karen:  It does get tougher each year to think up fresh and enticing topics.  Every year has seven topics (one for each day) and two “wildcards” that bloggers can use if a certain day’s topic doesn’t inspire them.  So that’s nine topics a year, and we’re in the sixth year – yikes!!  However, in the past few years I’ve been asking bloggers to submit topic ideas and that has been a huge help and inspiration.  And since Diabetes Blog Week is for the community, putting out a call for topics seemed like a great way to get the community even more involved in DblogWeek.

Kerri:  What is your favorite part of Diabetes Blog Week?

Karen:  My favorite part is definitely all of the excitement and enthusiasm the DOC shows.  I remember back in 2010 when I held the first Diabetes Blog Week I wasn’t even sure anyone would sign up.  So I’ve always been very thankful for all of the support over the years and I’m so happy bloggers still are willing to join in.

Kerri:  What is the hardest part of Diabetes Blog Week?

Karen:  That first year, Diabetes Blog Week had 142 participants.  Although it was no small task, I was able to read and comment on almost every post written.  As of last year we had more than 200 participants and it gets harder to leave as many comments as I’d like.  It’s a good problem to have, but I definitely feel disappointed that I can’t find the time to comment on every single Diabetes Blog Week post.

Kerri:   And how can people participate this year? 

Karen:  I have put all of the information (I hope!!) and a sign up form in this year’s Diabetes Blog Week post.  Also, the topics have been posted here so bloggers can check them out and start thinking about what they want to write.  And if anyone has a question I haven’t addressed they can email me at DblogWeek@bittersweetdiabetes.com.

To sign up for Diabetes Blog Week, click on that snazzy little button there (designed by the endlessly talented Mike Lawson) and fill out the quick and easy form!  Diabetes Blog Week is an amazing way to become reacquainted with diabetes blogs you’ve been reading for years and to discover new voices to add to your support team.  Have fun!  Make friends.  Write bunches.

Thank you, Karen, for bringing us all together for a sixth year.  🙂

 

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Apr 13

23 Comments

Dexcom SHARE: First Impressions.

“Your thing is going off.”

Though nondescript, that phrase is a loaded one.  It is Chris-speak for, “Your Dexcom is making an alarm of some kind; you need to take a look at it.”  And now that the Dexcom SHARE application is feeding my glucose results to my husband and a few other authorized viewers, when the thing goes off, other things go off and people are notified.

And by way of notification, I’m disclosing right here and now that I have a relationship with Dexcom.  It’s kind of serious, and I look forward to when they meet my dad.  Details here.

I’ve been using the Share for a few weeks, and have had some time to give it a good once-over.  My take on the SHARE 2 application itself:

  • Overall, my data transmits pretty seamlessly from the receiver to the phone, but there have been weird times when the data just stops.  (When I’m on a plane, this makes sense.  When I’m at my kitchen table, it does not.)
  • Essentially, that means I am poking this fine little fella in the face several times a week, to help jump start whatever is borked in transmission.  If he were less cute, I wouldn’t feel so bad about jamming my index finger into his jaw.
  • It feels weird to have to put my password into the app in order to access the “followers” screen.  Why protect that specific screen, but not the others?
  • I thought having the option to only add five followers would feel limiting, but in fact, the ability to share my CGM data has not made me want to broadcast my stuff to the world.  Five followers is fine so far; right now, I have my husband, a close friend, a doctor-who-is-not-my-doctor-but-we-are-trying-something-out-for-the-sake-of-SCIENCE, and myself.  And yes, I have added myself because I wanted to be able to access my data alongside the data of those who I am following when I go into the Follow app.
  • (Does any of that make sense?  Let me know if it does not.)
  • Also, iOS only?  Frustrating because anyone who is not using an iOS device can’t be added to my network.
  • The alarms that are issued through the phone are wicked loud, and very useful.  I recommended that Chris keep my high alarms off and only receive notifications for hypoglycemia, which is working out reasonably well.  (Especially when I am traveling, and can respond to his, “Eat something,” texts with a quick, “Already did.”)
  • The application doesn’t seem to eat up my battery life on my phone or on my receiver, which I appreciate.  I feel like the Share receiver holds battery life better than my previous receiver.  I charge it once a week and even then, it’s not drained.
  • I forget that the application is on and working because 85% of the time, it’s on and working.  I rarely switch it off because it doesn’t impact my battery life (or actual life) much to keep it on.  Except when it becomes emotionally charged, which is a whole different point and one I tackle a bit further down.
  • Using the receiver that’s Bluetooth enabled versus the dock you had to plug into the wall is obviously an upgrade, and contributes to ease of use.  Also, it’s easier to pack.  And harder to forget.

And my take on sharing, in general, with this application:

  • Sharing data is personal.  Wicked personal.  And it’s a choice, one I’m grateful I can make.  Again, I can’t rework my islet cells, but I can decide what devices and treatments I use to manage this disease.
  • And sharing makes me feel a little ashamed, at times.  I can reason as to why it should NOT, but it’s a reasoning I find difficult to follow through on.  Keeping my blood sugar data devoid of emotional valuation is difficult for me.  I was raised on “good” and “bad” blood sugars, not “in range” and “out of range,” and seeing a graph that pings and pongs all over the place makes me feel weird emotionally as well as physically.
  • For example, two weeks ago I had a urinary tract infection (much like this epic one).  It was nasty, and both the infection and the antibiotics for it sent my blood sugars into the stratosphere.  This glucose saturation was sent up to the cloud and pinged out to the people I trust.  None of them knew I had an infection, but I felt the need to say something about said infection so they’d understand why my numbers had gone bananas.  I felt good about having people I trusted so much that I knew they wouldn’t judge me, but at the exact same time, I felt the need to explain myself.  My knee jerk response of justification kind of flies in the face of the security and trust.  And it’s not because of them or how they judge me, but because of me and how I judge me.
  • Same goes for the following week, when I was on another medication (everything is fine, by the way – just a flurry of things all at once) that caused wicked blood sugar spikes.  We’re talking HIGH with arrows still pointing up.  I took a bolus that put every other bolus I’ve ever taken to shame.  And after a few hours, I mentioned this medication to those with access to my data because I felt the need to explain the numbers.
  • Which opens up my “what the fuck” mental folder, where emotional responses to diabetes end up filed.  On the one hand, I really like having a loved one or two able to see my data because that their access offers up a safety net I’m very grateful for (and have written about several times).  Also on that hand is the accountability that works to my benefit.  As I told my friend who has access to my CGM data, the commiseration angle is empowering because it makes me want to rein things in faster than if I was the only one looking.  Blood sugars on display are ones I watch more carefully, for whatever reason.
  • But on the other hand is my desire to turn off the data sharing because I want to let my blood sugars stutter and splutter without scrutiny.  I want to fail, or do what I perceive as failing, in private.  Sometimes I want to leave the Sharing option on only throughout the nighttime hours, or exclusively when I’m traveling, so I can keep a foothold on my dignity.  Not that my numbers are shit all the time, but the past two weeks have been tough even for me to see, and I’m familiar with my own bounce.  (And there I go again, explaining away the things that make me feel ashamed.  This is part of the fuckery, because my management does not come easily to me, and I try every single day to work these blood sugars out.  I test and exercise and track and eat well and truly make efforts and yet blood sugars bounce.  I can blame diabetes, but since the due diligence list is so long, there’s always something I can look at and blame myself for.  Which is a fun dance.)
  • Have I mentioned that sharing data is personal?  Let’s go back to that for a second, because it is.  And the level of sharing that works for me on days when my blood sugar is 94 mg/dL and holding steady is very different than when I’m riding out a 287 mg/dL for three hours.

I’ve made no secret of the fact that I appreciate options, and the option to Share is one I’m happy to have.  Coming full circle, I can choose to share or not share.  I can also turn off accessibility to others with the click of a button.  Honestly, I am grateful that I have a network of people I trust with this kind of personal data because it’s some soul-baring kind of shit.  And as an adult, I can decide how these data are dealt with because they are mine.

Maybe, with time, I’ll stop viewing these data as little dots of validation and instead as information to help me live better.

 

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