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

 

VeryLightNoSugar_Logo_Final_3

 

 

 

 

 

This is also for

writing shitty, third-string poetry. boldly dubbing it ‘poetry’ anyway. then rhyming poetry with poetry in a so-called poem. knowing that we all have to start somewhere and this is your clean slate. the previous writer at the coffee shop gifted a warm window seat, the free Wi-Fi password, and a slightly weathered stick of chalk, neon pink. the freckles on our fingertips glow in the dark.

This is for

the unpublished drafts

the phone notes

the changing of the font

and calling that a poem

the “for what it’s worth I’m sorry”

if sorry could be plural

for existing, maybe

for being there, sometimes

for not being there, enough

for showing up

and talking down

for myself

for others

for hitting “publish”

because your brain demands

at 11:33 pm Eastern Standard Time

that this is right

that this has to get out

that these prepositions

go against everything

that middle school grammar book said

when you read it obsessively

to prepare for a pop quiz

so you could always be the best

on paper, that is

 

but you don’t care

about those silly rules

anymore

 

Que será, será.

Thank You Card with Flowers and Sunshine

Thank you to those who participated in the infusion set online research study previously detailed here.  Thanks also to those who looked into participating, and to those who shared the screener link.

As many of you know, insulin pump infusion set functionality is a topic close to my heart.  Understanding more about user experience is invaluable to the future of diabetes care.  I hope to call on you again for future opportunities.

Thanks for doing your thing!

-Ally

Flowers2

PAID ONLINE RESEARCH STUDY

Yes, you heard me correctly.  This is an opportunity to give back to the diabetes community through participating in research,  while also receiving compensation to do so if selected.

I am working with Matchstick LLC (my disclosure) to help spread the word and find participants for their study detailed in Matchstick’s words quoted below:

“[Matchstick’s] goal is to understand what patients and caregivers want and need to create solutions that eliminate barriers to treatment and ensure clients are developing the right devices. To us, the people who use these devices always come first.

Matchstick is running an online research study that can be completed on your computer or through an app. The study goal is to understand the current practices of insulin pump users. If you have diabetes, are insulin dependent, and use either Sure – T or Silhouette with a pump you may qualify for this research study.

This online study is currently open and closes end-of-day Thursday, July 5th.[*] The study is set to be completed over the course of 2 separate days of your choosing during the open period. It should take approximately 45 minutes to complete the activities for each day, for 90 minutes of participation in total.

If you qualify and complete the study you will receive compensation for your time.”

*Date updated.

Also noteworthy:

  • You must be US-based to participate.
  • Encrypted platforms are used, and participant information will be de-identified.
  • The research is being conducted for a device company client of Matchstick LLC.  The research will not be published.

If interested in participating and/or sharing the link, the insulin infusion study screener can be found here.

Or, you can manually copy and paste the link from this address:

https://docs.google.com/forms/d/e/1FAIpQLSez5jzqrl6N-UXb0TuB9wex7JJnwrcLvwvy_pVlx-S6l4Y2ag/viewform

I encourage you to please share this link within your networks, particularly Twitter and insulin pump-related Facebook groups.  Thanks so much for your participation and assistance!

-Ally