6.

Very Light, No Sugar celebrated its sixth anniversary this September. Every year I am humbled to remember that this website has been read by people in more than 100 countries worldwide. Other aspects of life have taken up more of my time and energy in recent years, and I have certainly reduced my blogging frequency. I am slowly learning to accept that perhaps this is just how the tide rolls sometimes, yet I still cannot quite let this blog go completely.

I’ll be honest: I feel a bit out of the loop in terms of DOC stuff lately. Snippets on Twitter allude to the latest in DOC news or passionate talking points, and I sense the gist of the backstory but do not quite know it all more often than not. Again, that is okay. Now is others’ time to shine and my time to listen. But it is not an excuse to be complacent on my part when there are inequities in diabetes, and healthcare at large. We can definitely do better, and although I may not be as vocal as I once was, I am still rooting for the good eggs and a better world for all people with diabetes.

Thank you to those in our community who have become friends over the years, those who have been along for the full ride- the ups and downs of life akin to a wild Friday night Dexcom graph, and to those who care about improving our quality of life throughout it all. Here’s to many more years together.

Hugs,

Ally

Masks

If it is too much to wear a mask

for thirty-four seconds

in the peppers and carrots aisle,

Imagine what it feels like

to stab your abdomen

with a gigantic Dexcom CGM needle

every week or so,

Taping a foreign device on your body

through showers and swimming pools,

on your wedding day

donning a mask again at happy hour

To be privileged by virtue of the pain

we don’t discuss

The incessant buzzing in your ear

that something is almost always ‘wrong’

What if we were just kind enough

to care about it all

about each other

anyway?

Listening

I’ve done my fair share of tweeting (eh, venting) recently.  The constant struggle of survival with chronic illness is a challenge only truly appreciated by those who live it, day in and day out, for decades.  We never get time off, and our feelings and exhaustion are valid.  Add a pandemic to that, and the Covid reverberations amplify this specific pain.  But, it’s not all about me.

As for here, on this blog, right now, I am all about listening.  I can never write a blog post that says I truly know how it feels.  I acknowledge that privilege, often dictated by zip code at birth, has affected my life and its opportunities.  Although I empathize with their struggles, I would not purport to know exactly what others go through, as influenced by lenses of psychology,  disease, war, socioeconomics, race, lived experience, and so much more.  Frankly, we only know our own stories best, and it is a disservice to others when we claim, via logical fallacy, to represent everyone.  The current headlines are an example of why.

I simply want to write a note here saying that I am listening, and I hear you.  In the niche example of the diabetes world, the ripple effects of Covid-19, racism, and healthcare, combined, are a costly threat.  Our society snuffs out its promising people by these intertwined inequities by design.  The voices of those affected the most should guide our way as our world demands change now.

 

Much love,

Ally

April as a List

I find us at the conclusion of yet another month, and perhaps my hopes to get back into blogging more frequently have lapsed or feel too self-centered, as evidenced by this last minute post for April.  The hectic pace of work, life, healthcare appointments, advocacy, and, a pandemic!!!, have certainly taken up my time lately.  But I do miss this space, and connecting with you regularly. I hope that you are staying well during all of the chaos in the world right now.

My main superficial, positive takeaways from self-imposed quarantine:

  • There are never enough books to read! But reading voraciously again is a nice perk.
  • The show, Power, on Starz is totally binge-worthy.
  • Reconnecting with friends and family via phone calls or emails
  • Long, quiet walks

 

Superficial Cons:

  • I understand the need for telehealth, but it is just not my thing.  I can’t wait to get back to in-person care once it is safe to do so.
  • Iced coffee at the drive-thru was a bigger part of my life than I realized!
  • Too much pressure to Zoom!

 

To be continued in the future, as health/safety/time permit:

  • Much-needed vacation with friends this summer / fall
  • Perhaps more blog appearances
  • Coffee dates!

 

How about you?  Stay well!

 

 

 

 

Awake

What have I learned during this November, another ‘National Diabetes Awareness Month’ (NDAM)?

Call me jaded, but I am already quite aware of diabetes every time I poke my skin with one of hundreds of thousands of needles involved since my T1D diagnosis almost 29 years ago; or, when tweeting out the bat signal during a 4:07 am low blood sugar yet again interrupting a healthy sleep cycle, and seeing dozens of Twitter folks nodding in solidarity.

During NDAM this year, I felt a sense of “been there, done that.”  Frankly, at times, I did not even like this month- having the unwanted spotlight on me per se, as one member of the diabetes demographic.

November has its merits: sharing the warning signs of diabetes to prevent future death and disability related to preventable DKA; highlighting the high price of insulin; detailing why #weneedacure; finding much-needed new voices here in the diabetes community; involving people without diabetes in the diabetes cause.  All good stuff.

I suppose for me, personally, the pivotal “woke” advocacy moment did not occur this November, though.  Rather, it was in September 2019, when watching the peaceful protest video of Nicole Smith-Holt, hearing the anguish in her voice as she said her son’s name then, and continuing to hear it resonate now.  That is good advocacy- the kind that wakes you up, makes you think many months later.

Some media coverage of that September citation moment was passive in its reporting.  ‘Protester tripped and fell into a cop car’ sort of stuff.  Far from it.  Given the circumstances, Nicole and other advocates see a need for change, and they bravely and gracefully take action to get us there.

During November, I shared a few random tweets about life with diabetes, the hope for a cure, etc.  But mostly, I tried to do more listening than talking this time around.  As I tackle other challenges lately, diabetes has not taken up as much space in my world.  Perhaps that is a change of interests, my admitted privilege, or a combination of these and other factors.

But at the end of the month, it’s not all about me.  It’s simply about making our world better for all people touched by diabetes- honoring the past, present, and future.  Whether it is November or December, we have no other choice but to continue showing up to the diabetes fight.

Perhaps, here in the informed online diabetes realm, we are aware enough already.

The real question may well be: Are we awake yet?

Good Vibes

I am excited to join HealthiVibe’s patient steering committee, composed of key opinion leaders from diverse areas of healthcare.  Together, we are dedicated to driving the patient advocacy perspective in clinical trials and drug development.  My disclosures can be found here.

I am not shy about my feelings towards a type 1 diabetes cure: We are long overdue.  Clinical trials and drug development get us that much closer to improving quality of life for people with various health conditions.  I appreciate the opportunity to work with the creative minds at HealthiVibe and on the steering committee to foster this greater cause, to hope in a better future.

Many of my close friends are Veterans and Service Members.  They admirably answered the call to serve a purpose larger than themselves.  They sacrificed their time during deployments, as did their families who supported them from afar.  They, perhaps, went through physical and emotional pain while in service, and afterwards.  They signed up when not everyone is brave enough to do so.  They knew that their contributions could make a positive difference in the world.  They are modern day heroes and heroines.

I view clinical trial participation and drug development similarly.  Those who sign up for these scientific inquiries sacrifice their time.  They take the pledge knowing that not everyone else does, and that there may be emotional and physical effects on their lives.  They show up anyway because they can make a difference.  Even if a clinical trial does not yield the best case scenario results – diabetes or cancer is not yet cured, for example – we still garner invaluable information from the process.  We learn more about what works and what does not.  We cannot get there without those who volunteer, who serve a purpose larger than themselves much like my Veteran and Service Member friends.

We are currently at a crossroads in healthcare.  On one side, innovation and opportunity are promising.  On the other, access and affordability remain real world barriers to lifesaving and life-sustaining treatment.  We need cures and attainable, high-quality healthcare for many conditions, from type 1 diabetes and more.  And to get there, we need clinical trials and drug development to meet those in the trenches where they are, to lift up the mission for improved quality of life for all.

I welcome your insights as I work closely with HealthiVibe’s steering committee to advise on such matters.  Thank you to HealthiVibe and to the members of the steering committee for the opportunity to collaborate.

 

Cheers,

Ally