advocacy

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

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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.  

 

 

 

HealthiVibe Blog

This week I was featured in HealthiVibe’s “The Patient Lens” blog series, where I discussed the challenges of diabetes stigma and misunderstanding, as well as the need for advocacy.  To read the blog post, please see here.

HealthiVibe does great work for patients, and for the healthcare community at large, by representing the human voice in medicine with an emphasis on the importance of clinical trials.

I am of the opinion that participants in clinical trials are of the very bravest and selfless amongst us.  Those of us currently taking medication owe our improved quality of life to clinical trial participants who stepped up and said “We’re willing to do this” when these medications were being tested.

Thank you to HealthiVibe, and to clinical trial participants, for all that you do.

Try.

Try.

Dictionary.com says

“to attempt to do or accomplish”

“to put to a severe test”

“subject to strain, as of endurance, patience, affliction”

“to attempt to open (a door, window, etc.) in order to find out whether it is locked: Try all the doors before leaving.”

Fear.

Dictionary.com says

“the feeling or condition of being afraid.”

I fear spiders.

I fear insulin- too much and too little and not finding that happy medium dose.

I fear carbohydrates- too many or too few.

My biggest fear, though, is misconception.

If something “bad” ever happens diabetes-wise, others might think that I didn’t try.

This is why,

despite the fears,

brush the spider off the car windshield.

Say a prayer and take the insulin.

Eat the carbohydrates.

Treat the lows and the highs.

Until there’s a cure, we must

“Try all the doors before leaving.”

Try. 

Short and Sweet

If you have wanted to get more involved with the diabetic online community (#doc) but are not quite sure how to do so, today is a good day to dive right in.  We don’t bite!

Use the hash tag #IWishPeopleKnewThatDiabetes (brought to us by Kelly @diabetesalish) to document what you want others to understand about diabetes.  Advocacy starts with the first tweet, Facebook post, blog writing session, and so forth.  And advocacy can happen anytime, not just today. We’d love to have you onboard!

World Diabetes Day 2014: The Day The Whole World Turned Blue

We are all together in a great sea of blue, and if I do say so myself, blue looks good on us!  Who doesn’t like watching the blue ocean waves crash along the shore?  Who hasn’t wondered what goes on all the way across the pond?  We all know that diabetics wake up and fight every day in every corner of the globe.  That is why blue unifies us.  Now it is our time to tell others about our lives with diabetes. No matter the type of diabetes, we share a universal goal of taming the diabetes beast, living well, and supporting each other.  We dream of a cure together.  We know that the potential for a cure is there.  We want future generations to speak of diabetes as a mythical monster that some brave souls once crushed into the soil, never to hear from it again.

There are plenty of wonderful research and advocacy endeavors going on right now. We all have our personal favorites and I encourage any cause that lessens the burden of this disease. Today, I ask you to take a moment to look at the Faustman Lab at Massachusetts General Hospital.  For those of you who do not know Dr. Faustman, suffice it to say that she is a phenomenal, witty, kindhearted, passionate human being first and foremost, and these qualities make her an innovative doctor. I am a bit biased, but I would love to see her cure this disease.

If you are unfamiliar with the Faustman Lab, please check out their website at faustmanlab.org.  If you are looking for a new cause to support, forego your morning cup of coffee and instead send a few dollars to Faustman Lab. If you already support the Lab, please continue your support. The research is promising, the process is not invasive, and the team behind it is fully dedicated to conquering autoimmune disease. I am not a scientist, but I believe solving the complexities of one autoimmune disease will be to the benefit of many other diseases, whether defined as “autoimmune” or not. The more we understand about the malfunctioning of the human body, the better.

Thank you for your support, and I truly hope that everyone enjoys World Diabetes Day 2014 whichever ways you choose to celebrate. May your blood sugars be stable, your bodies and minds able, and your hearts basking in the glow of the diabetes “label”- for this one day, at least.  Own it!

#BigBlueTest

Big Blue Test

The last month or so has been a balancing act of sorts made more difficult by the fact that my balancing skills ended decades ago after a few too many tumbles-gone-wrong in kindergarten gymnastics class.  Work was stacked up on my desk, and many days I found myself slouched in my chair at lunch, reading feverishly before grad class scheduled for that evening and picking at a salad and a half-eaten salami sandwich.  I’d break away for 5 minutes to get a very light, no sugar coffee, but that was the extent of things.  Exercise?  I don’t have time for that! echoed around the tired spaces of my head.

I kept hearing of the Big Blue Test and shrugging it off as something that I’d like to do one day when life wasn’t a three-ring circus trying to fit four rings of obligations into a tiny amount of time.  When Laddie over at Test Guess and Go suggested that I give the Big Blue Test a try, I tucked her words into the back pocket of my mental toolkit for a few minutes, procrastinating yet again when it came to exercising.

I Google-searched Big Blue Test, promising myself to throw in the towel if signing up was even remotely challenging.  In hindsight, it was thankfully quite easy to register.  Big Blue Test is free; it encourages you to get off your bum and move around; and it fosters a good conversation about diabetes and exercising.  It’s a win-win-win-win-win-situation, and you can also encourage others to join in on the fun.  You can download the phone app, answer a few questions (whether diabetic or non-diabetic) each time you work out, and $1.00 towards diabetes efforts is granted by the Diabetes Hands Foundation for each exercise log that you make.

I have found that this app holds me more accountable for leaving my desk to stretch my legs for 15 minutes at work.  The ten second practice of entering the data into the app makes the process fun and rewarding; watching blood sugars drop from even 220 to 205 in 15 minutes is still a little victory for diabetics versus the diabetes monster.  Take that, diabetes!

I may have felt like the world would collapse without me typing up a storm at my computer for 15 minutes prior to the Big Blue Test, but, no surprise here, the world moved along just fine and I was able to enjoy the nice fall weather when taking my weekly walks.  Friends have joined me and we have some great diabetes discussions on our walks after I explain the meaning behind the Big Blue Test.  Krissy over at Krissy’s Dance and Fitness Studio in Rhode Island is helping out our cause by logging her workouts and asking her clients to do the same.  Coworkers have risen to the occasion to keep me company on my strolls through the city.

“So, do you have to take shots?” one walker asked.

“I used to take a lot of shots, but now I have an insulin pump,” I explained, lifting my shirt to show him the “pager” part of the pump.

(Don’t worry, I spared him the dramatic war stories of my insulin pump experiences in recent months for now. Baby steps…)

In all seriousness, though, moments like that help our mission to spread awareness of diabetes. They get people thinking outside of the misguided media portrayal of the disease.  They inspire others to stay healthy by working out with us and giving to a great cause in the process.  There is all good and no bad by participating in the Big Blue Test, as far as I’m concerned.

Lastly, those walks make these moments quite salvageable:

Nurse, while flipping through my blood glucose logs from the past week: “So, cheese and crackers for dinner almost every night…? And ice cream sometimes?  I mean, you did pretty well with your blood sugars, but still…??”

She wasn’t being judgmental, rather, she was rightfully concerned that a fully-nutritious meal definitely wasn’t happening on school nights.

Me: “Yeah, it’s called the ‘grad school special.’ Plus, I ‘worked out’ this week…”