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Posts tagged ‘psychosocial support’

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.)

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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.

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Thanks, Scott.  See you in a few weeks!

The One About Broken Windows.

Tackling diabetes, one window at a time.

(See also:  caulk)

(And the second part of the CGM in the Cloud write-up will be up on Monday. A long night with a cranky Bird didn’t make for any decent writing. Thanks for your patience!)

Diabetes Food Lies.

So many rules were slapped into place immediately upon diagnosis, with diabetes feeling like a disease of “don’ts.”  Don’t eat cookies, don’t forget to measure your food, don’t leave the house without your meter or insulin or glucose tabs, don’t go to bed without checking your blood sugar, don’t eat too much sugar-free candy or else you will take up temporary yet violent residence in the bathroom.

But some of the don’ts were more subtle:  like “don’t allow the disease that’s built around obsessing about food to let you become obsessed with food.”

My mom used to hide packages of cookies in her closet, and I’d wait until she was in the shower to steal into her walk-in and grab cookies by the fistful.  I’d eat until my stomach ached and I didn’t take an injection to cover my indulgences, and to this day, I still grapple with the “why” of my actions.  I know I am not the only kid who did this.

Guilt and food went hand-in-hand right away for me, as a kid with diabetes.  I felt guilty about eating those closeted cookies, and even more guilty about lying to my mother about my actions.  And yet I did it anyway.  I have a very clear memory of hiding a carton of ice cream underneath the couch upon hearing my father’s approaching footsteps, afraid not of him telling me I couldn’t eat it, but being angry that I didn’t care enough to take insulin to cover it.  I have no idea why I never bolused for those furtive snacks; it was as if taking insulin for them forced me to acknowledge that I shouldn’t have eaten it in the first place, as though the bolus itself made the action real, instead of the resulting high blood sugar.  Or, you know, chewing and swallowing.

I never wanted to have that high blood sugar.  I just didn’t want to have the restrictions, and my way of rebelling against them seemed rooted in pretending I didn’t have the rules of diabetes to own up to.  Rebelling was so subtle, and so easy, for me.

Now, as an adult, I still find my feelings about food to be complicated.  I feel very lucky that I have never dealt with an eating disorder and I always accepted, even if I didn’t always like, the shape and layout of my physical body, but diabetes has a way of making me view food through a lens that my non-diabetic friends don’t share.  My mind knew that numbers on the scale or the size tab on the back of my pants didn’t matter as much as number on my meter, but still, it is always a struggle to remind myself of that fact.

But the guilt that comes with my relationship with food, as a person living with type 1 diabetes, is always on my plate.

I live in my own house with my husband and my daughter, and I still have that urge to hide my food.  Last night, I had an uncomfortable low blood sugar reaction that I decided to use the candy conversation hearts in the deli drawer of my fridge to treat, instead of glucose tabs, and as the deli drawer creaked as it slid open, I wondered if my husband thought I was just “sneaking candy.”  (For the record, Chris hasn’t ever, ever made me feel guilty or judged for what I’m eating.  The guilt isn’t borne from the reaction of others, but from my own projected perceptions.  It’s a weird head game.)  Some of the thoughts remain, but my mini-binges stopped long ago, once the don’ts of my mid-1980’s diagnosis of type 1 diabetes gave way to today’s modern insulins, meters, and mindsets.

A few days ago, a parent wrote to me and asked me why her child with type 1 diabetes would lie about eating certain foods.  And I had no idea what to say, because I still don’t know why I did it myself, or why I still sometimes have the urge to do it.  All I know is that even with a supportive family, friends who don’t judge, access to like-pancreased people, and a mindset dominated by confidence in my diabetes management, I struggle to explain what made me binge-eat those cookies, or binge-lie about doing it.  And I don’t know why, decades later, it’s still hard to say out loud.

[This week is National Eating Disorders Awareness weekWhile this post is not about an eating disorder, it is about the disordered mindset that can come along as part of a disease that is anchored in food.  If you’ve ever felt guilty about your food choices or perceptions, you are not alone.]

What is a Diabetes Advocate?

Last night’s #dsma chat was a terrific one, focusing on how people in the diabetes community define “advocacy.” I wanted to summarize it here (at least the parts that resonated for me) because it could serve as a catalyst to inspire.

[For information on what the #dsma chat is, click here. And to learn more about connecting with people with diabetes on Twitter, click here.]

The community shared their advocacy “origin stories:”

And then we compared notes on what we’re most passionate about:

… segueing into reasons why that topic is something that touches our advocacy hot spots (sounds sassy …):

But of course, the road towards getting something done is often paved with obstacles. For many of the folks on the chat, “fear” played a huge role in holding us back:

So how do we, as the “diabetes ONLINE community,” remove the Internet component and bring advocacy offline?

Not everyone has to be an advocate for diabetes, and not every advocate raises awareness in the same way. But every voice matters, and no effort is too small. How do you advocate for diabetes? And how can we, as a community, help move your efforts forward?

Guest Post: Someone Who Understands.

Part of what drew me to the idea of creating a diabetes blog was the search for, and the hope of finding, people who understood.  Google was a dark abyss of bad news and depressing statistics; what I needed was to connect with others who were living life, with diabetes along for the ride.  That same connection still feels necessary, now almost a decade later.  This morning, fellow PWD Heather Gabel has offered to guest post about the search for and the becoming of Someone Who Understands.

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Holidays are meant to bring family, friends, and loved ones together. It is the nature of holidays to feel warm feelings, give hugs and thanks, and to eat all the treats you can.

I would be fibbing if I said the ‘Holiday Spirit’ didn’t consume me each year. I start preparing for December 25th on November 28th. The giving and the hugging and the loving fills me with a sort of joy that I don’t find as readily accessible in other times of the year.  However, ever since diagnosis, which for me was at 11, there has always been something missing. One piece of the puzzle that until last year I could not seem to find.

Pardon this cheesy attempt to convey the overall sentiment, but to feel complete during the holidays, all I want for Christmas is … Someone Who Understands.

I want someone who knows what it is like to wake up in the morning on Christmas and do diabetes things before joining the family. I want to talk about what it feels like to miss those moments of laughter coming from where you would have been if diabetes didn’t take those minutes away.  I want someone who has been through the “Should you be eating that?” and that saddened glare when mom sees that you have stolen one of Santa’s cookies.

Connecting with someone who understands is so powerful during the holidays, when what makes you different feels isolating and you really get the FOMO (fear of missing out) going on.

Last year I stumbled upon something that filled that gap. What was it you ask? Why, the DOC [Diabetes Online Community] of course.

This outstanding community of individuals, via Twitter, Facebook, blogs, TuDiabetes, Glu, Children with Diabetes, or other social networking site, has connected me to a SWU (Someone Who Understands). And, to even more capture the holiday spirit,  the DOC allows me to be someone else’s SWU.

The DOC is a birthplace of friendship. Year after year, you get to know your DOC friends more and more.

I was talking with Mike Lawson about this recently and he described something I hadn’t really addressed before. He said that before he started going to conferences and meet ups, it felt like he had two distinct groups of ‘friends’. His “friend-friends” being those he physically spent time with and his “online-friends” being those in the DOC. When he started going to conferences and meeting face to face with the people he knew so well online, the groups began to merge. The lines between them became fuzzy and overlapping.

As a PWD (person with diabetes), and a PWD who has now attended four diabetes conferences, I couldn’t agree with Mike Lawson more.

Meeting people you know well through online platforms feels strange and almost backwards. You know their secrets, their fears, their hopes and dreams, and then you meet them and begin small talk because you don’t know much about their home life, their job, responsibilities, their family.

Relationships develop online, but they seal in person.

As a PWD who is 23, the holiday gap is not entirely filled by the DOC, and this is why: finding a Someone Who Understands who is close to my age is incredibly difficult online.

I don’t always feel a need to talk to someone in my exact same boat, usually if you have diabetes that is sharing waters and thus close enough. But there are times when I want to connect with a PWD who is wondering what to do after college, how to land a entry level job that offers good enough insurance, how to wear a bikini with both CGM and pump sites hooked in, etc.

There are programs out there bringing together 20-somethings with diabetes. There is College Diabetes Network, Friends For Life, Students with Diabetes, Facebook groups such as Females w/ Diabetes, Diabesties, etc. There are mentor programs like Insulliance via Beta Connect and fundraising young adult groups such as JDRF YLC chapters. BUT, there still seems to be something lacking.

It is a feeling of solidarity.  Where is a core group of PWD’s going through life post college?  Where do we meet up? How do we stay in contact?  I am certain that there are groups of friends with diabetes in the 20 something range who would completely disagree with me. You interact constantly and feel supported by your peers. That is wonderful! Where do I sign up?

If this is your circumstance, I urge you to grow your group.  Find ways to connect with others who are blogging and tweeting and Facebooking. Make a blog, yourself, and invite others your age to read it.  (A great example of someone who recently started this process is Walt. He is a 20-something who has yet to meet another PWD in person. He couldn’t find the voice, so he started it.)

During this holiday season, the DOC could become greater, more powerful. We could reach out, and welcome floaters and lurkers and plan to meet or attend the same conferences. We could inspire them to begin sharing their vital voice.  It could be a merrier year in the DOC, if we collaborated and sought out a 20-something group of advocates, writers, athletes, innovators, students, shakers, and makers.

I feel certain that there is complete openness for something like this to develop within the DOC. We just have to begin moving in that direction.  (Hey veterans, any ideas of how to begin?)

If you are a 20-something and write a blog, leave your URL in a comment below and share if you are interested in forming a solidarity group. How can we better support each other?  Moving forward through life’s many stages would feel more safe if we could all experience it together.

If you are interested in reading some diabetes blog’s by 20 somethings:

Walt’s Blog
Courtney’s Blog
Heather’s Blog
Elizabeth’s Blog
Jen’s Blog

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After graduating from UC Berkeley with a degree in East Asian religion and philosophy, Heather Gabel joined the Diabetes Hands Foundation team in fall 2012. While working there, she has become greatly involved in the diabetes community, both online and off. Heather founded an organization called Beta Connect that inspires positive language practices in people with diabetes through the implementation of mentorship programs at hospitals and healthcare centers.

And please, if you’re a 20something blogger living with diabetes and you want to find, or be, that Someone Who Understands, please leave a link to your blog in the comments.  Make the search easier!

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