Four

Very Light, No Sugar celebrates its fourth blogoversary today.  I am typing this while sipping on a blueberry coffee with cream, of course.  Some things never change…

Healthcare is keen on data, and I am humbled to note that VLNS has been read in 104 countries and counting since my first post in 2014.  We surpassed the 100 countries mark this year, a feat that I never could have predicted those 4 years ago when I was sick on the couch with a defective insulin pump, simply setting out to blog in search of answers, advocacy, and support.

While my personal healthcare and advocacy journey has been marked with the typical waxing and waning, highs and lows analogous to life with type 1 diabetes, overall I am happy that this space exists.  Where we go in the future is to be determined, but VLNS will forever be a part of my heart.  And I am grateful for those of you who have loaned VLNS some space in your hearts as well.

I have admittedly been quieter on social media lately, and particularly, on this website.  Perhaps my semi-silence is my own subconscious form of protest, the loudest way to express that I will never be okay with the clanging tambourine of the status quo in diabetes land.  The older I get, the clearer it is to me that we have our work cut out for us.  Perhaps I am the rogue #doc voice still figuring it all out, and I would be remiss to pretend to be anything else as a blogger.

Simply being alive, ~27.5 years after a T1D diagnosis, with health insurance and access to insulin, puts me in a very different position than most of the people living with diabetes worldwide.  I pledge to continue to advocate for all of us.  Sometimes that means taking a step back in order to stand up, to challenge the way things are and to remember the human faces behind why we need drastic change.  Sometimes that means recognizing that my own voice doesn’t have to be the loudest in this moment; in fact, it is easier to hear the community vibe when I turn my own volume down and listen.

There are pillars of truth that have not changed in my 4 years here:

We need a cure.

We need inclusive community that is not scared of entertaining various viewpoints, that can agree to disagree, that lifts up rather than puts down.  We need each other.

We need megaphones, and at times, we may need space.

We need a free, unbiased press and a healthcare industry that values humanity above all else; we need healthcare players who recognize that sometimes the will of The Whole may differ from the corporate office views.

We need affordable, accessible insulin.

We need blogs and tweets and advocacy actions.  Look around.  It’s working.  I’m proud to call many of you my friends and fellow advocates.

 

Thank you for allowing Very Light, No Sugar to be part of the #doc fabric for the past 4 years.  The diabetes landscape may change, for better or for worse, but our roots will always be strong.

Cheers,

Ally

 

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“I Be Up In The Gym Just Working On My Fitness”

In the famous words of Fergie, “I be up in the gym just working on my fitness.”  Or, at least I should be for my overall health, as well as my diabetes management.

Admittedly, my exercise regimen has waned in recent times.  During grad school, I was on a mission to do #AllOfTheThings and to do them very well, so I was somewhat of a “gym rat.”  Nowadays, I will meander around the city on my lunch breaks or take a stroll to de-stress after work.  Otherwise, does lifting up a Bud Light and putting it down count as a workout? (Inquiring for a friend…)

Needless to say, when I was asked to review the fabulous Christel Oerum’s eBook, Fit With Diabetes, I realized it was a good opportunity for an exercise and diabetes tune-up, and, perhaps, to help some of my readers/followers do the same.  (See below for my disclosures).*

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Christel is “one of us,” a fellow person with diabetes (type 1), who clearly has a passion for fitness and healthy living.  She does not come off as “preachy” in the eBook, which is a welcome change to what is customary in literature regarding diabetes and exercise.  Rather, Christel is down to earth and likable.

She acknowledges that there is certainly tough work cut out for us, yet illustrates that our goals can be more attainable through some helpful tips.  As Christel explains in the introduction to the eBook, we each have individualized diabetes and exercise needs, but with a proper framework in place, we can make the process smoother.

From cardio, to resistance training, to nutrition, to workout routines, Fit With Diabetes has us covered.  The various chapters of the eBook are user-friendly in terms of looking up specific areas of focus quickly and easily.  Christel provides real world examples for various scenarios, such as planning effectively for different types of exercise whether using an insulin pump or injections.  From my viewpoint as someone looking to get re-motivated on the exercise front, it was nice to see these firsthand examples.

I believe this eBook is a useful tool for anyone living with diabetes, their support networks, and healthcare professionals, alike.  Christel provides a straightforward guide by which you can generate your own effective course of action.

Please see here if interested in reading the eBook.

Many thanks to Christel for contributing this insightful work to our community!

 

 

 

*My disclosures are the following:

I was asked to review Fit With Diabetes, and I received a copy of the eBook in order to do so.  Opinions expressed are my own.

Thank you to Ginger Vieira for introducing me to Christel Oerum of DiabetesStrong.com and author of Fit With Diabetes.

 

 

 

 

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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Reese’s Cups and Hamster Wheels

I first fell in love with memoir as a junior in high school during a course aptly titled Rewriting A Life.  There, I was introduced to the work of Mary Karr, and to this day I soak up her words like a sponge absorbs a misplaced glass of cabernet: fully, and scattering droplets where they are most needed (the only clean part of the carpet, for example).

Here’s a droplet:

When you’ve been hurt enough as a kid (maybe at any age), it’s like you have a trick knee.  Most of your life, you can function like an adult, but add in the right portions of sleeplessness and stress and grief, and the hurt, defeated self can bloom into place.

-Mary Karr

That’s sort of how I feel lately.  The perfect storm of life stressors- past, present, and future- has left me questioning my moral successes and failures, my worthiness as an advocate, and where to go from here.  The answer is that there is no black or white response- only more questions, and more places to go.  The best work I can do at the moment is simply to voice this.

I am angry that our fellow people with diabetes are dying because insulin is inaccessible and ludicrously expensive.  I am angry that the people who can afford insulin- myself included- are under the constant pressure of maintaining positive disease outcomes with rusty toolboxes.  I am angry that we do not have a cure.  I am angry that we are so fragmented as a community, that when we voice dissent we are quickly hushed by the status quo of comfortableness and the diabetes industry- luxuries that so many others do not have.  Finally, I am angry that I am angry, that I have scapegoated much of my anger on diabetes, and that I have not always handled life’s difficulties with the grace and dignity that I know dwell within my heart.

However, I am grateful that despite the bad stuff, there are friends and supporters who still believe in the good stuff.  Their love has never wavered, and has inflated into a life raft when needed most.  (Thank you).

Rewriting A Life does not mean you get to copy and paste a Cinderella ending to your story.  You simply get to live it, and to describe the good and the bad in detail that has the potential to resonate with someone else who desperately needs to hear you.  Perhaps you desperately need to be heard, too.

Recently, emotional and physical health have felt like running on the hamster wheel while nursing a sprained ankle and a hangover.

So, I switched things up and adopted a guinea pig.

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This is Reese.  She is colored like a Reese’s cup.  

She is currently petrified of me, but I hope the same thing that I hope for you, or me, or any living creature: that she feels loved nonetheless.  

 

 

 

Not-So-Terrible-Two’s

Very Light, No Sugar has reached its second blogoversary.  Although I find myself wondering how time has flown by so quickly, that simply means it’s been a fun two years.  In 2015, I had a lot to say at this time.  This year, I will keep it short and sweet.

Thank you to those who have visited my website over the past two years.  When starting a blog in 2014 from a tiny apartment in Rhode Island, I never imagined that people in 73 different countries would visit my little corner of the internet so far this year.

Although 2016 has brought some diabetes frustrations along the way, I am comforted in knowing that we have honestly shared our stories with the world.  Someone out there who needs to hear our words is listening.  The #doc and other healthcare arenas are platforms by which we can give a voice to a greater purpose, where we can make the decision to be good despite the bad that life throws at us.

Your faith and support on the bad days make the diabetes cross a lighter weight to carry.  Your genuine kindheartedness makes the good days that much sweeter.

I still daydream about the day when I will celebrate blogoversary # XYZ and get to write that our communal efforts cured diabetes that past year.  In the meantime, I am simply happy to have found your support, and hopefully to have offered some back in return.

 

Forever lifting my coffee mug to you,

Ally

XOXO

 

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“Survey Says…?!”

***Update: The survey is now closed. 

Thank you so much to everyone who participated and/or helped to spread the word!

Diabetes folks, please consider participating in my research survey, which can be found here:

Very Light, No Sugar Survey 2016

 

Please read the bold text of the cover page, as it is very important to our data collection.

Sharing is appreciated. Thank you!

 

 

Words

The third DBlog Week topic, Language and Diabetes, is one that hits close to home for all of us.  Currently, I’m saving many of my thoughts on the topic in anticipation of Stanford Medicine X in September.  At MedX, I will be participating in an ePatient panel on mental health and chronic disease, and language will surely be discussed there.  We hope you will join us- whether physically at Stanford, or virtually!

In the meantime, please see here for some prior thoughts on the words we use, and how we should use them.