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Posts from the ‘Diabetes Online Community’ Category

Look to the Edges.

I saw this thread on Twitter last night from Dr. Jake Kushner, Chief of Pediatric Diabetes & Endo, BCM/Texas Children’s Hospital in response to a person with type 1 diabetes living without health insurance. Here is her account of what that experience is like.

You can throw whatever stones you’d like about people needing to pull themselves up by the boot straps or whatever you want to use to explain their perceived inability to fix their dire situation, but I read her words and they were overwhelming. I was diagnosed with type 1 diabetes at the age of seven and right away, I was on my parents’ insurance policy and they fought the access battles for me. I stayed on their insurance through college and started my “real job” two days after I graduated, on my own insurance policy and finally understanding what it was like to ensure I was insured. Now, I have the support of my family and access to insurance coverage that, for the time being, covers what I need and also a fair amount of what I want.

I am lucky. I know this. I appreciate this more now, in these strange political times, than I ever have before.

Dr. Kushner mentioned “the edges” of the diabetes community, where people are crowdsourcing funding for their insulin or forgoing other bills in order to afford their supplies. Where people are struggling. Where people are dying. These stories aren’t often heard. But they need to be. Reading Ana’s story didn’t open my eyes to the fact that these stories exist, but more than they need to be told and amplified and heard.

They need to be heard.

“We need to look to the edges of our T1D community, away from the center. Who is having trouble? Who struggles to get care? How can we help?”

If you feel as though you are on “the edges” that Dr. Kushner mentioned, and you have a story about diabetes, access, and what real life is like with this disease that needs to be heard, please share it. If you’d like to share it here, please email me. I would really, really like to share this platform for stories that make a difference, and those stories are so much bigger than mine alone. Our collective is powerful.

But whatever you do, please don’t stay quiet. We need to hear your stories.

Every single person with diabetes counts.

Guest Post: A Note to My Newly-Diagnosed Self

Today, thanks to a very generous reader named Cathy Fisher, I’m able to host a guest post about being diagnosed with type 1 diabetes as an adult in the form of a letter from Cathy, to her newly-diagnosed self. 

Cathy was diagnosed November of 2003 at age 18, in her first semester of college. At the time, she was the first diabetic she knew. She has spent the 13 years since her diagnosis writing about diabetes. Cathy is also an entrepreneur and avid traveler living in Lisbon, Portugal, and I’m honored to share her words today.

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Dear Self,

You were diagnosed 13 years ago, during your first semester in college. You had just turned 18. You passed out in the dining hall at breakfast, in DKA. Do you remember waking in the emergency room, doctors hovering above you, blurred images like scenes from a movie? The thirst. The phone call to Dad, all terror. The CD mix from Lauren, “Get Well Soon.” Your first episode of Saturday Night Live from a hospital bed.

You struggle(d). And you’ve learned/are learning. There’s so much I wish you had known from the beginning, and so much to keep in mind still. Here is what I can put into words:

There’s knowledge. You’ll wake in a hospital bed with a new identity to own – “Type 1.” There’ll be so much to learn. How to fill a syringe, the difference between bolus and basal, what the heck a carbohydrate is and how to count it (please learn this one ASAP, it will serve you well). Etc. Etc. Etc. These are all tools. Seek and use them.

Seek wisdom. Book knowledge is only part of the story. Your body will teach you its own truth, a sort of wisdom that doctors can’t teach. Be present for what your body has to say – how different foods make you feel, or how to sense an oncoming low. How to recharge emotionally. Be receptive to your body and mind’s own insights. They can be more important than what you can get from a pamphlet or Google.

Respect your body. Use your body in every way that you can … seek adventure, explore, and do what you love. Go backpacking in Peru, dancing with friends, running by the ocean, for a sunset glass of wine with Pete. Pull an all-nighter, be a student of yoga, try new foods, get lost walking through a city. Catchphrase: with respect. Cathy, it will take you years to learn this, but not all limits need to be pushed. Remember that time you partied on a Friday, ran a half marathon on Saturday and went skydiving on Sunday? That was probably too much. Treat your body with tenderness. Can you find the place where adventure, challenge and harmony meet?

Love yourself. Love your beautiful brilliant diabetic self. You have always been enough. The day you were born with a perfect pancreas. The day your pancreas began to fall apart. That time you “cheated” (could we call it “excursioned”?) over tiramisu in a hostel in Puerto Montt. You are inherently wonderfully made.

Own it. Diabetes contraptions and all. Rock your glucose sensor anywhere that works for you. Clip your pump to your bathing suit bottom, give yourself injections on the subway as needed, and understand that your diabetes paraphernalia can be a sexy thing. And if you ever get weird looks, never underestimate the power of Sass (No, this is not an iPod clipped onto to my hip and INSERTED IN MY SKIN) and teaching opportunities (It’s for diabetes – want to see how this works?).

Make love, not war. Sass can be an ally, but keep your feistiness in check. Don’t take feelings out on diabetes! There are days to hate it, and I hope most days you can accept it. Try to make friends with it sooner rather than later.

Humor helps. Sometimes, all you can do is say “Oh shit,” shrug and move on.

Yes, you can. You have never let anyone tell you that you can’t. You go, girl. Keep it that way. Because yes, you truly can. You can do what you dream of, with or without diabetes. Be a person you are proud of, explore, reach for what’s important to you, set goals and reach them, make mistakes, learn, love and be loved. There is a part of you that is diabetes neutral. Listen when it tells you: yes, you can.

Inspire yourself. Look for inspiration everywhere. Truffaut, Zadie Smith, paper journals, Tokyo, a place called Cherokee, yoga, learning, travel, dawn, morning coffee, the ocean, solitude, people. Diabetes can be heavy, so fill yourself with what inspires and nourishes. And when you do this, can you see the world through a lens of wonder?

Seek community. And lean on it. Friends and family, near and far. The diabetes community, online and in person. Support groups. Your doctor, nutritionist, diabetes educator, psychologist. Putting yourself “out there” can create the most unexpected and meaningful connections.

Perspective. This will be your greatest tool. Your diagnosis was crushing. You felt profound grief for the first time. But you’ll find moments of perspective. When you do, hold onto them, they will humble you. The question will shift from “Why me?” to “Why not me?”. This will feel so good.

Rock on,
Cathy

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Thank you for this amazing, introspective letter, Cathy.  Hopefully you’ll inspire others to pen one of their own … working on mine now.  

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!

“Don’t you all know each other?”

A few weeks ago, we were in Venice and I almost walked right into the canal because I saw a lady with an insulin pump on her waist and a CGM sensor on her arm, speaking Italian to the shopkeeper and casually wearing her pancreas on her hip.

The flurried rush of emotions – excitement, understanding, the urge to shout “one of us!” – flooded me.  I grabbed my husband’s arm and said, “Hey DID YOU SEE HER PUMP?!” and he was all, “No, where?” and I pointed my finger while trying to make it look like I was itching my nose.

And my daughter said, “Yeah mom, I saw her!  And her pump! Do you know her? Don’t you all know each other?”

(You know, I wish we did.)

And even though we don’t all know one another yet, we can contribute to the growth and collective power of our diabetes community by participating in Diabetes Blog Week.  Sign-up details are on Karen’s blog – this is the 8th year! – and topics will be provided throughout the week.  And if you’re not into running a blog, you’re welcome to guest post here on some of the topics, if you’d like.  (Email me!  kerri (at) sixuntilme  (dot) com. )  Also, you can shape-shift the topics to fit into 140 characters on Twitter, or through Instagram, or other social sharing platforms.  Don’t let the “blog” in blog week keep you from sharing your story.  All voices are welcomed!

Twelve Years Old.

My blog turns twelve years old today.

Twelve years ago, I was a twentysomething mess wondering if I was the only PWD who wanted to connect with other like-pancreased people.  Twelve years later, I’m a thirtysomething mess who has found her peers and benefitted from those connections in ways that far surpass any drop in A1C.

Grateful doesn’t even begin to touch how I feel about the last 12 years.  Thanks for being part of it.  And for making the journey with diabetes one we’re on together.

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