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Posts tagged ‘Diabetes Online Community’

Voices Carry.

There’s no generation assigned glibly to me – not a millenial, not a Gen X’er, but I seem to be an “xenial,” according to this new write-up.  I identify completely with “experienced an analogue childhood and a digital adulthood.”

My journaling has gone from paper journals to blog posts, too.  I used to keep volumes of chaotic ramblings as a kid, before switching over to blogging.  I’ve written over 2,760 entries on Six Until Me, chronicling my diabetes since May of 2005.  And recently, I’ve wondered what keeps this pen to paper (or, more accurately, these hands to keyboard).  What’s the point in sharing my story?

Even my diabetes has made a transition from analogue to digital.  When I first came home from the hospital after my type 1 diagnosis, my mom used a urinalysis kit for a month before gaining access to a glucose meter.  (Note:  Glucose meters were available, but we didn’t have one for four weeks)  My glucose meter was an Accu-Chek Brick (not the real name but could very well have been) and my lancing device was this wretched thing.

Glucose results were not stored in my meter but instead were logged by hand.  I didn’t count carbs; I followed the ADA’s exchange system.  Two starches, a protein, a fat, a fruit … and a headache with each meal.  My insulins were NPH and Regular and yes, the bottles had little cows and piggies on the side.

Thirty years later, the touchscreen insulin pump on my hip delivers fast-acting insulin without uncapping a syringe.  A continuous glucose monitor offers up glucose results every five minutes.  My meters download and upload to the cloud consistently and even my prescriptions can be refilled using an automated service.  My diabetes has gone entirely digital.

… except.

That it remains diabetes.  All of the technology is truly amazing and life-changing, but this body still doesn’t make any insulin.  Still experiences blood sugars above 200 mg/dL and under 60 mg/dL.  Exercise is still an exercise in planning and perseverance.  Still doesn’t process food physically the way that people without diabetes do.  Mentally doesn’t process food the normal way, either.  Or the concept of longevity.

Diabetes is a raging back burner that is on all the time, despite going digital, because it is still NOT CURED.

And that’s what keeps me sharing my story, and sharing stories from other PWD:  it’s still not over.  We’re surviving and thriving and kicking a tremendous amount of ass but we’re still doing this with diabetes dragged behind us, a weight that is light as a feather some days and heavy as an A380 on others.

Our voices carry.  Sharing your personal diabetes experience helps it reach the ears and eyes of someone who needs that affirmation that they aren’t alone.  Stories change over time, too; and diabetes has been a part of all of those experiences.  When I first started writing, it was about college and dating and finding a job.  Then it became planning a wedding and cultivating a career.  Now, twelve years later, it’s a lot about traveling, expanding my writing, and raising my children.  My life has changed, is changing, and sharing these experiences shows one small version of what life with diabetes might look like.

That yeah, it’s diabetes and it’s not over.  But my life is also not over.

So cheers to you, all of you who are sharing all the triumph and chaos that comes with chronic illness.  Our collective cadre of storytellers – the ones who write about incredible feats of strength and conditioning their bodies.  The ones who write about creating life.  The ones who share the mental health perspectives.  The ones who influence policy.  The ones who talk offer a moment of “me, too.”

The ones who change minds.

The ones who change hearts.

We keep going because we don’t have a choice to leave diabetes behind.  But we do have a choice to bring hope forward.

Looking to make a difference? Here’s how.

Scrolling through a newsfeed these days can be downright painful.  There’s not a lot of happiness or success being highlighted, and that can take a toll on your mental health.  What can you do to make a difference?

There is something you can do.  Something you can do this minute.  And your actions have the power to save the life of a child.

Today marks the beginning of the Spare a Rose campaign, which runs every February 1 -14th.  The idea?  Instead of buying a dozen roses for your loved one, buy 11 and take the value of that spared rose – about $5 – and donate it to IDF’s Life for a Child program.

“Living with type 1 diabetes can be challenging wherever you live, but in some countries lifesaving insulin, management tools and education are entirely unaffordable or even unavailable. Life for a Child partners with diabetes centres in these countries to supply young people with these vital components for life. We are working towards the vision: No Child Should Die of Diabetes.

The program commenced in 2000 and currently supports over 18,000 young people living with type 1 diabetes. In 20 of the 42 countries where we work, we have the resources to help every diagnosed child. With your support, we can achieve this in all 42.”  – LFAC website

I looked in my fridge this morning and saw three months worth of life-saving insulin sitting there, all casual, in my butter compartment.  Seeing that stash of insulin made me feel lucky.  So I spared a rose.

And I hope you will, too.

 *   *   *

You can participate in the Spare a Rose campaign by sharing the donation link, spreading the word on social media (use the hashtag #sparearose), and asking folks in your family, neighborhood, and office to consider joining the efforts.  Thank you for helping make this campaign a success and for taking care of our diabetes community both here at home and across the globe.

Type 1 Origins: Talking Comic Books with Partha Kar.

Dr. Partha Kar

Dr. Kar has been a Consultant in Diabetes & Endocrinology at Portsmouth Hospitals NHS Trust since 2008 and the Clinical Director of Diabetes from 2009-2015.  One of his main areas or passion is in helping to redesign diabetes care in an attempt to integrate chronic disease management across primary and secondary care.  He’s won many awards and has helped patients with diabetes across the spectrum.  I’ve been following UK endocrinologist Dr. Partha Kar on Twitter for ages now and have been watching the development of his type 1 diabetes-centric comic book with excitement.  Just recently, the comic was released into the wild.

The superhero twist that wraps around the diabetes narrative makes the idea all the more interesting.  According to the comic intro, “As comic and superhero fans, it seemed to us that there were some parallels between the times when a type 1 diabetes diagnosis is made and when a superhero discovers their powers for the first time. There is often shock and surprise among the feelings experienced in both situations, followed by acceptance and adaptation.”

I couldn’t agree more, and was thrilled that Dr. Kar took a few minutes of his time to answer some questions about his work, the comic, and the DOC.

–   –   –

Kerri: Thanks for taking the time to answer a few questions, Dr. Kar! Can you give me a little background on your involvement with the diabetes online community, and how diabetes has touched your life, personally?

Dr. Kar: Social media and interaction with the DOC probably has been the biggest education I have received in my career. Its been fun, enjoyable and educational and I have enjoyed so much of it! Personally, this is my life, my work, my job and everyday in one way or another, diabetes always affects what I do – much needs to improve in my view. I see folks struggle every day with little things – somehow it would be nice if even a little bit of that could be improved.

Kerri: I’ve been watching the development of your T1D-centric comic book with great interest from the US. Can you tell me a bit about why you created this comic?

Dr. Kar: Comics are great source of education-as far as I am concerned – I have always loved how they have explored the issues of social isolation (X men); teenage angst (Spiderman) etc. and has always been one of my loves of life. Somehow it seemed natural to join that and diabetes together – it felt like a medium which hasn’t been used much – and perhaps could help with showcasing type 1 diabetes and raising awareness.

Kerri: What makes the narrative of diabetes so important, in your opinion?

Dr. Kar: Diabetes is and always has been a multifaceted condition – ignorance towards it – or simply labeling it as a condition of “being unhealthy” is wrong on so many levels, let alone the different types which are totally different entities. Its important we make that clear.  Type 1 and type 2 diabetes are fundamentally different with fundamentally different needs – it’s important as HCPs that we help in raising this awareness too.

Kerri: Who helped you bring your creative vision for the diabetes comic to fruition?

Dr. Kar: As regards the comic book, big thank you to many individuals. I don’t have type 1 diabetes – it would be silly as fellas wrong for me to do the narrative – I wouldn’t even know what it is to have a hypo. Thus, my huge thank you to Andy Broomhead, Jen Blackwell, Laura Cleverly, and Joe Griffiths who helped create the story board. Danny Mclaughin from Revolve Comics was the dude who brought it all to life – while my co-conspirator was Dr. Mayank Patel- we have always call each other Bruce & Clark. I will let you figure out who is who!

Kerri: What are you hoping to accomplish with this piece? And what part of the comic are you most proud of?

Dr. Kar: Raising awareness is a key theme, as well as maybe helping to explain type 1 diabetes to someone newly diagnosed slightly differently. My analogy is that its perhaps like a super power – but not one which people want – sort of like the Hulk, who spends his entire life trying to find the cure but along the way, learns to live with it, sometimes control it … a super power he never wanted in the first place. Proudest part? Perhaps the panel where the character meets someone he knows and understands he is not “alone.”

Quality nod to S.H.I.E.L.D.

Kerri: Outside of the comic trade, I know you’re actively involved with the diabetes community as a healthcare professional. What is your background as a healthcare provider, and how does that background intersect with your creative outreach efforts?

Dr. Kar: I like trying different things- for example a one stop shop for those with type 1 diabetes or indeed TED style talks. I like changing things, shaping new things, exploring new horizons … I suppose I like a challenge and for certain, improving type 1 diabetes care is no small one. I have a huge desire to improve type 1 diabetes care – let’s see where it takes me!

Kerri: How can readers of Six Until Me check out your comic book? And also, how can they connect with you on social media?

Dr. Kar: Comic book is free! Go to Revolve Comics and feel free to download- use it, spread the word and hey if you like it and want more, come back with ideas! Who knows – I have ideas swirling in my head about turning this into an animation … early days but who knows!

As regards getting in touch- just follow me on Twitter (@parthaskar) and feel free to poke, ask anything you want. As I say to all and sundry, if asked with respect, no question is tough- if I don’t know it, I will be the first one to put my hand up. I look forward to interacting with as many folks with T1D as I can.  As I said, it’s always such a fab learning opportunity and I genuinely enjoy the chats.

 –   –   –

Thanks for chatting with me, Dr. Kar, and I’m looking forward to more from your team of superheroes!  To download the comic, visit Revolve Comics and you can grab it for free.

Keeping it Bubbly Without Bubbling Over.

Yesterday, I was at the JDRF TypeOneNation event in Dallas (big thank you to Tandem Diabetes for sponsoring my attendance in full – more on that disclosure here), and I did two presentations.

Despite only seeing a circuit of airport/shuttle/hotel/shuttle/airport, Dallas was fun.

During my talk on “Life After Diagnosis,” a family asked about my views on diabetes, citing that I seemed to have a lot of energy.  (Little do they know that coffee is to blame.  A real one; my first in several months.  And it was lovely and made my brain go hey I still work – jump up and doooooown!)

“You seem very bubbly, and very positive about your diabetes. My daughter hears a lot about people who are very positive and upbeat about their diabetes. She is not there yet. How can we help her get there?”

That’s a loaded question, because it runs on the assumption that once you hit a moment of diabetes acceptance, you stay there. This September, I’ll mark the 30 year point with type 1 diabetes, and I’ve had more than a few run-ins with diabetes burnout, episodes of less-than-optimal, and emotional struggles with diabetes. Sometimes that’s not properly conveyed here on my website, and less-so in person, because I don’t like to write about struggling too often. It’s not a matter of being ashamed of the struggle, but more that chronicling emotional stress sometimes adds to emotional stress.

Think about it: if you’re feeling crumbs-ish about diabetes, and you make a list of reasons why you feel crumby about diabetes, now you have this list of crumbs-inducing stuff staring you in the face. A bulleted list of reasons you should feel like garbage.  That kind of reinforcement is not my jam.

For me, itemizing my grief doesn’t work. What does, at least for now, is identifying what’s bugging me and then embracing the opposite of that bug.  In the past, I’ve actively hated the process of checking my blood sugar.  Oddly enough, a new meter case was enough to trick my brain into being less frigging angry about it.  When my blood sugars were tanking after exercising and frustrations were mounting, my husband helped me focus on the benefits of the exercise itself, even if I was consuming a juice box (or four) after a specific workout.  Focusing on small victories made dealing with some of the bigger bullshit moments easier.

And sometimes I’ve just needed time to fill back up.

Diabetes “acceptance” isn’t a staircase, where you achieve a mental milestone and continue to work from that point. If anything, the emotional aspects of diabetes are more like an escalator that sometimes stalls out and becomes stairs, which then sometimes collapse entirely to become a slide backwards. I’m not sure what’s at the top, what the apex of acceptance might be for other people, but for me, I picture it as feeling comfortable taking a few steps forward at times, knowing full well I might stumble back.

The point is, there’s always something.  People aren’t always honest about what they’re struggling with, which can paint a perception of achievable diabetes perfection, which is absolutely not a thing.  I’m not sure how to advise someone to “get there,” but instead assure them that “there” looks different for everyone touched by diabetes.  Community, and connecting with others who understand on the most nuanced of levels, helps.   Diabetes is a journey.  It’s a pain in the butt.  It’s a constantly needy little thing that shouts often and loudly at times, whispers quietly and pokes me with an unraveled paper clip at others.

But at the end of the day, diabetes is ours to wrangle in, and on our worst days, the diabetes community helps us to hog-tie that shit.

(Also picturing comfortable pillows and one extremely fluffy and endearingly cross-eyed/double-pawed kitten at the top of this staircase, and maybe a giant iced coffee that I can stick my whole face into and then sprout gills to be able to breathe under coffee.  To be specific.)

Guest Post: Making Connections.

Stephen Shaul is one of the most insightful – and kindest – people I’ve come across in the last few years, and I really respect his thoughts on all-things diabetes.  (Links to his blog and podcast are in the bio below.)  Today, while I’m en route to 10,000 doctor’s appointments, Stephen is taking over SUM to talk about the simplicity, and the power, of making connections.

  *   *   *

“Excuse me, is that a phone there on your belt?”

“No, it’s my insulin pump.”

With just one question and a simple, short answer in a doctor’s office waiting room, a conversation was started between me and a new member of the diabetes community. I put down the publication I was browsing and took a seat next to him.

The man was newly diagnosed, type 2, and had not yet even heard of an insulin pump. He had been diagnosed about ten days earlier by his primary care doctor. Initially, he resisted the idea of going to the hospital. In that moment, he wasn’t sure how to proceed. Everything was so new and so much, he told me. He was there for a follow up appointment. He looked scared. Really scared.

In the few moments we shared together, he confessed to not knowing much about diabetes, but he “must be bad”, because his blood glucose number at diagnosis was unusually high. I assured him that if his number at diagnosis wasn’t unusually high, he wouldn’t have diabetes, and while diabetes is bad, he as a person is not.

I told him a couple of things that I tell many people with diabetes: that the hardest thing about living with it is the fact that it’s always with you and you can’t walk away from it; and that BG checks and A1c results are just benchmarks… something to base treatment on, but not something to assign self-worth to. I finished up by telling him that there are many resources online to go to for information and support, and that he is not alone in living with a condition that affects 29 million people in the USA and 415 million worldwide.

You know what? Five years ago, I couldn’t have had that conversation. Five years ago, I didn’t know much about diabetes, I didn’t know much about the online community, and I certainly didn’t know how to talk about it. What’s changed since then?

Well … I found people online telling their stories and engaging with others whenever they had the chance. They made me want to do the same thing. They made me want to help someone newly diagnosed not feel so alone. I actually learned what to say and how to say it from others who have been in similar situations before. I learned the importance of making connections and opening up a brave, new world to someone who didn’t even know that world existed before they met me.

I also remember my diagnosis, how initially I thought I had everything together, and then walked helplessly through life as one awful A1c piled up after another. Let’s face it: if you’ve never been exposed to diabetes, it’s easy to be overwhelmed by the flood of new information (and misinformation) that comes with a new diagnosis. How I wish I had someone then to help me cut through the confusion.

As I was called back to see the doctor, we shook hands, I wished him all the best, and I asked him to call me if he had any additional questions. At the end of our conversation, he seemed more at ease. At least I hope he was. I don’t know.

Diabetes has a way of making us feel isolated, especially in the beginning, when we need reassurance the most. Making connections that support, empower, and foster communications between those living with and affected by diabetes can often be as critical to our health as the insulin and other drugs we take. It only took a minute to welcome a new member to the community. Here’s hoping my new friend finds survival along with comfort, and happiness instead of fear. And though I really hope we could have no more new diagnoses, here’s hoping he can find a way to help if he crosses paths with a new diagnosis in the future.


Stephen has been living with Type 1 diabetes since 1991. Since April 2012, he has been writer of the diabetes blog Happy Medium, and since then, has covered a number of diabetes-related subjects, including participation in clinical trials, living a week gluten free as if he were newly diagnosed with celiac disease, and the complex relationship between patients, corporate interests, and government entities.

Since July 2015, he has been host of the Diabetes By The Numbers podcast, where he interviews newsmakers in the diabetes community. He advocates for people with diabetes everywhere through support of legislation designed to reduce the burden and ensure safety of people living with diabetes, and through encouraging others with the phrase “I support you… no conditions.”

 

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