*Not Another Mount Everest Story*

Today marks my 27th diaversary.

 

My detailed reflections are still there.  But, to speak my current words, I just require a proverbial megaphone and a rooftop to shout from:

 

It remains unconscionable that there is no cure. 

#weneedacure

 

Diabetes has made other things more difficult.  And other things have made diabetes more difficult.  And around we go.

Behind all of that, I see a human being.  Her eyes look back at me in the mirror, tired.  She will never stop fighting this disease, and she drinks a lot of coffee.  But, damnit, she is tired.  

There’s still so much left to accomplish. It’s certainly doable. But, it feels like a lot a lot a lot. 

She is telling her truth here because that is the realest advocacy she can offer today.

There were many times when she did not want another “climbing Mount Everest” diaversary story.  She simply needed a beer with a friend (or an affirmative blog post), a friend who could not reasonably promise that it would all be okay.  But that friend would sit beside her and say cheers to #weneedacure anyway, because it was the bravest idea they could hang their hope on.

This is the “tell your truth” edition of the Mount Everest story.

Sometimes, that truth hurts.  Tell it anyway.

Advocacy lives in the stories and in the people with the eyes, staring back at us in the mirror.

It is more than enough.

 

#weneedacure

  

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#MedMo17

*dusts off blog*

I recently enjoyed a trip to New York, where I caught up with my good friend, Mette Dyhrberg, CEO of Mymee.  We presented at MedStartr’s #MedMo17, which I would describe as the healthcare version of Shark Tank but with even more meaningful interaction among all participants in the ocean of health.

For those interested, you can view MedStartr’s #MedMo17 Empowered Patient Panel here.  Our presentation begins on Day 2 around the 4 hour, 41 minute mark.

While not giving too much away for those who want to watch the video, I will mention a few noteworthy takeaways from MedMo17 here:

  • It was an honor to present with such passionate healthcare advocates.  It was even cooler that our panel ended up being all women- such a rarity in the healthcare world.  These ladies know their stuff and have done so much for their respective communities.  The audience engagement was also A+!  Many thanks to MedStartr for having us!

MedMo17

         (Panel photo via Aline Noizet)

 

  • I was totally impressed with mycounterpane.com, a platform created by MS advocate Kate Milliken, who pitched at MedMo17 and also presented on our panel.

 

  • Other shout outs go to socialworkr.com for supporting those who do so much to support others, and to FHIR HIEdrant as an example of good marketing/branding in health technology.

 

  • Some MedMo17 attendees approached me to talk about diabetes advocacy following our panel session.  They reinvigorated my spirits and reminded me why we do what we do (so well!) here in the #doc.  Thank you for sharing your heartfelt stories and for rooting for our cause.  It means more than I can express here.

 

  • Brooklyn has always been on my bucket list to visit, and it was just as charming as I imagined.  I had fun catching up with my first college roommate (who by some miracle is still my friend considering how obnoxious I was freshman year!) prior to my drive home.  #GoFriars

 

  • Finally, thank you to Mette for your ongoing support and for hosting me in New York.  We were instant friends when we met at Stanford Medicine X in 2016, and our foundation of friendship remains strong to this day.  Through the help of Mette’s Mymee app and coaching, I have achieved a better quality of life.  (Watch our panel video to learn more!)  I am eternally grateful.

 

MedMo- NYC

 

 

 

 

 

In Memoriam

  • Alec Raeshawn Smith (26 years old; USA)

 

  • Shane Patrick Boyle (48 years old; USA)

 

  • Kevin Houdeshell (36 years old; USA)

 

  • Others worldwide whose names we do not know

 

 

This list honors those confirmed to have died prematurely due to healthcare inaccessibility and the high costs of obtaining insulin.  Sadly, these deaths occurred in the 21st century, at a time where cutting-edge treatments and healthcare benefits are hot topics.

We can and we must do better.

 

While I am normally shouting from the rooftops for a diabetes cure, this year feels different.  The diabetes community will never forget the names on that list, which speaks to their continued advocacy even after death.

My one ask on World Diabetes Day (WDD) 2017 is this:

Let’s not add more names to this list by the next WDD, or the next one, and so on.  The clock starts now.

 

The best memorial we can provide for those named here is to keep that list stagnant through our collective efforts.  Whether you identify as a fellow person with diabetes; someone who loves a person with diabetes; an employee of Pharma / PBM (pharmacy benefit manager) / insurance company / healthcare entity; an advocate; a non-profit leader or volunteer; an elected representative; a healthcare provider; or simply a human being with a heart, we must actively address this issue, together.

All politics aside, the only meaningful, mutually exclusive interests when it comes to insulin are life or death.  Particularly in the past year, we have encouraged a more open dialogue among many parties in the healthcare equation.  I hope that today reinvigorates us to keep moving that dial forward, toward more equitable opportunities for survival and quality of life for every person touched by diabetes.

There are many blog posts and articles out there detailing how this can be done effectively.  My little piece of WDD advocacy is not to reinvent that wheel today.  It is simply to ask us to reflect on lives lost too soon, and on so many others who fight convoluted healthcare systems all over the globe in search of insulin.

Keep saying their names.  May we hold their stories closely today, and always.

 

 

If you know of other names we can honor and remember here, please contact me to update the list.  Thank you.

 

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3!

Very Light, No Sugar is celebrating its third blogoversary!

Thanks to those from all over the world (99 countries!) who have read my website over the past 3 years. How humbling to see that our words are able to reach so far, and that we remain unified in our mission to kick diabetes to the curb.

This year provided different avenues of healthcare advocacy for VLNS.

Reese joined our ranks!

The Coffee Dates interview series was a big hit, and our strong resolve to make insulin accessible and affordable was a highlight topic.

I am grateful to have traveled to Indy to participate in Lilly’s insulin access workshop at their corporate headquarters in April.  (Yes, I still intend to blog on this; yes, I’ve drafted the blog many times, in my head and on paper; yes, I have disclosures: Lilly covered my travel, lodging, and meals.)  More to follow, but briefly: It meant a lot to me to see the makers of and the history behind insulin firsthand, and to be able to advocate at that level for a better diabetes world.

Also new this year, VLNS has dabbled in No Rules (free verse) Poetry.  Poetry is fluid; it is not always autobiographical; it allows us to explore beyond the usual confines of writing. I am super excited for my tickets to see Neil Hilborn during his upcoming, mostly-sold-out U.S. tour!  Mental health and poetry- these are a few of my fav-o-rite things right now, and no one does them better than Neil.

On that note, I believe strongly that sometimes our best advocacy is to simply be honest- even brutally so. Do I have regrets about blogging? Frankly, yes.

If I could go back in time, I wouldn’t have been so corny when first starting out in the DOC. (“We are diabetes warriors, waging a cliche battle, we will overcome, ahhh!”).

A hard lesson in reality this year is that sometimes, no matter how tough your armor, diabetes and other stuff still hurt like hell and feel like losing more than winning. Occasionally, I wish I could crawl back under my little rock and regain my privacy and my life pre-blog. Or that there was a non-live-tweeting-your-emotional-rollercoaster space where one could simply shout at the wall.

There are a lot of asks in advocacy, and it is hard to say no. But advocacy needs a better balance- taking our time (and having our time respected) when experiencing too much at once.

No matter what, I will always be appreciative of this website and its following. And I hope year #4 is productive and meaningful for all of us.

Cheers!

-Ally

 

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Guest Blog: Mindy Chats Mental Health and Chronic Illness

Editor’s Note: My good friend, Mindy Bartleson, joins Very Light, No Sugar in this guest blog to discuss mental health, chronic illness, and her upcoming work. Thank you to Mindy for saying what is sometimes difficult to put into words.  It matters to many of us, and I can’t wait to read more from you in the future!

 

From Mindy:

Whether you live with a mental health diagnosis or not, mental health plays a significant role in life and chronic illness, like diabetes. But it isn’t the first thing that is focused on- or at all. Why is it often ignored? Or discounted?

 

Over the years I’ve seen how chronic illness and mental health impact each other. I have type 1 diabetes, but there are also a lot of other things going on in my life, including anxiety, OCD, and ADHD.

 

I often hear that message is it must be diabetes distress. That these emotions and possible diagnoses are only because someone has diabetes. Yes. This might be the case, but it isn’t always so. Diabetes is used as the easy answer- the quick way out- and this causes things to be missed- like a diagnosis or how to cope.

 

It’s a lot easier to cope and figure out ways to manage things when you know what’s going on. When I was diagnosed with anxiety, I realized how much of it played into my life growing up. I was told that I had grown accustomed to it. That it was my normal. I honestly cannot say if there was ever pre-anxiety. I was always a high strung and worried kid- even before the diabetes. The moment I went on medication, I realized that it had made a lot of things more difficult.

 

Sometimes my mental health impacts my diabetes- if I get anxious or stressed, my blood sugars typically go higher. If I cry, my blood sugar spikes. Then if I’m more stressed, my OCD plays out in my diabetes management. If I’m above the 200’s, I obsessively want to check my blood sugar every 20 minutes (even with a CGM). Then sometimes, if my blood sugar is high or low, it impacts my mental health too. A low blood sugar makes my ADHD more obvious- I’m more scattered. High blood sugars make me more anxious.

 

When my blood sugars aren’t in target or the issues from PCOS and endometriosis arrive, it becomes more difficult to manage my mental illnesses. It’s hard to appear like there isn’t a lot going on in my head. I cannot hide it.

 

But my mental health isn’t always about my diabetes- sometimes it is- sometimes it isn’t. The same goes for my diabetes. It’s hard to distinguish between the two, but the go to shouldn’t be to attribute everything to diabetes- it could be that, but it could also be something else. Like my blog focuses on, there’s always more to the story. It’s not just one thing- it’s often many things going on.

 

This is a major reason why I decided to take on a project.

 

You see, I’ve written a book, and I’m pursuing self-publishing. It’s about coming of age with chronic illness and mental health. I want to balance the positive with the negative of life experiences with honesty. I’ve always wanted to be an author, but to be perfectly honest, I never saw myself writing this type of book. Since I’m self-publishing, I also decided to use crowdfunding to make this dream a reality.

 
Mindy is self-publishing an honest book about growing up with chronic illness and mental health. She wrote the content before rose colored glasses impacted her experiences too much. To help this book get published, you can visit the crowdfunding page to learn more, back her project, and help spread the word. You can also follow Mindy on Instagram, Twitter, Facebook, and her blog “There’s More to the Story”.