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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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One Year Later: Thank You

One year ago, on September 6, 2014, I was a shadow of the person who I am today. I was gaunt, hungry, and insulin-deprived, the result of months of insulin pump product defects and subsequent health problems due to medication delivery malfunctions. Alone and desperate for answers, I decided to start a diabetes blog from my tiny apartment in Rhode Island. Very Light, No Sugar was created, and technical insulin pump support, as well as general diabetes support, was sought. I thought that I was looking for biomedical engineering answers, but it turns out that I was really looking for something more powerful: empathy and understanding. The diabetic online community (#doc) rose to the occasion.

I distinctly remember, years earlier, sitting at my desk overlooking a soccer field during my junior year of college. I Googled “diabetes blog,” and clicked on sixuntilme.com. Wow, can she write!, I thought, as I nodded my head along with the words that I read and laughed at Kerri’s signature humor. At the time, blogging seemed like something really cool for other people to do, but not for me. I was too busy pretending that diabetes-related anxieties were not affecting my life negatively. What do I really have to say, anyway?

Reflecting on the past year, right now I want to speak to those who think similarly to how I did in college. Trust me here; you do have something to say and something to write. Go for it. The #doc is generally supportive and uplifting, and each member offers a unique perspective peppered with the common bond of diabetes, whether as those with T1D, T2D, LADA, MODY, cystic fibrosis-related diabetes (CFRD), or as friends/family/caregivers. We all “get it.” Your perspective is part of the larger fabric of diabetes which connects us all. Isn’t that voice worth sharing, then?

When I started Very Light, No Sugar, I was the epitome of the dorky new kid on the playground. I tweeted and retweeted and never stopped virtually talking. Even today, live-tweeting my emotions could land me on TLC’s My Strange Addiction. [Insert “thumbs up” emoji].

Back in September of 2014, some criticisms labeled the #doc as too “exclusive.” I had only been in the #doc for a few days or so, but my first impressions of its friendliness meter were positive. So, I threw myself into a Twitter conversation amongst many “#doc pioneers” (i.e. the “big names with big hearts” whom we all love- no need to name-drop here) regarding how to make everyone feel welcome.

Much to their credit, the #doc pioneers did not bite at a newbie who had very little perspective to offer at the time.  To be honest, I did not really belong in that conversation. But they entertained my rookie thoughts, which went something like, “THE #DOC IS GREAT. EVERYONE IS COOL. BE FRIENDS WITH ME!!!” (I’m blushing as I write this). My point here is that when you start a blog, you cannot possibly be as nerdy as I was, and the #doc embraced me. Sooo, again- go for it!

My largest piece of blogging advice would be to foster genuine connections, which begins with being your authentic self. If others take the time to comment on your blog or to tweet at you, write back! Understandably, there are some #doc superstars who get inundated with messages; it is unfair to expect that they can respond to every single one. But for me as a “humble beginner” blogger, I had a lot of time on my hands. So I took an extra few minutes to engage with my audience, and I now consider many of those who I interacted with to be my friends. Also, dive into weekly chats like #DSMA and #DCDE for helpful advice and comradery.

Find your balance. Share as much or as little as you choose, but know that if you open your heart to the #doc, they give great big bear hugs of support. I will forever be indebted to Laddie and Cherise for sharing my Broken Record blog post about my insulin pump issues. The response was more than I ever could have garnered on my own, and it helped me to make the difficult decision to try insulin injections again. (In particular, Caroline’s reassurance that it would be okay sticks out in my mind; thank you.)

While I still have room for improvement in my diabetes management, I can say that I have grown into an emotionally-stronger person through this experience.  I have also learned that each person’s diabetes management choice is a very personal one; do what works for you.  We have plenty of options, and nothing has to be permanent.

Although we are unique individuals, we make up a larger whole- a powerful, inspirational, worldwide community.  At the time of publication of this post, my blog has been viewed in 58 countries, from here in the United States to Madagascar to Afghanistan, and many more globetrotting locations. That fact, in and of itself, has made me a better person. I am no longer desperate and alone. People from all over the world understand and support the same fight against diabetes.  All I can say is, “Wow!”  Although I wish that this disease did not touch so many of us on an international level, it is humbling to know that we are all in this together.

Thank you for hearing me out on the good days and the bad days, and thank you for allowing me to do the same with you. Thank you to those who email or message regularly with me (you know who you are); I cherish the wisdom, strength, and support found in our virtual Pen Pal notes. Thank you to those in the Boston area who came together for our inaugural #BetesOnTap meet-up, which offered social support for diabetics and filled a void in my heart that I had not quite acknowledged before.

I write often about electronic forms of communication, but- with her permission obtained beforehand- I want to note that my first old-fashioned mail came from Hope Duncan in New Zealand (NZ). I admire Hope so much for the wonderful example she sets for youth with diabetes. She is also one of the most talented artists out there, and I encourage you to check out her creations on social media.

Hope’s gift still sits atop my fireplace mantle, a spot reserved for cherished items. Her card explained the gift’s background, stating, “Well, it’s a marae, a little piece of NZ for you in the States. 🙂 The native people in NZ are called Māori and their meeting places are called marae (said like ma-rye)… I hope you can fit it all together. I taped the pieces where they should go, so hopefully that helps.”

Hope marae pic

The marae model (pictured above, along with Hope’s card) represents the #doc to me: a meeting place that feels like home, where all of the puzzle pieces fit together as part of the larger story of community.

One year later, I still want a cure for diabetes to help our community, our marae. I still hope and dream and pray for it every day.

One year later, I am motivated to achieve better health and to try new approaches if needed. Through the #doc, I have a safety net of support to catch me if I fall or to cheer with me when I succeed.  Likewise, I hope that in my own way, I have given the same support back to some of you.

One year later, I look forward to fostering new friendships and learning more in the online world of healthcare interactions, particularly with Stanford Medicine X (#MedX) coming up shortly.

One year later, I still drink very light, no sugar coffee, and one year later, I still lift my coffee mug to all of you.

Thank you, #doc- for everything. Thank you for who you are and for what you do, for advocating long and hard, for listening, for talking, and for caring. You inspire me every day, and I feel so blessed to consider you my friends and diabetes family. Cheers to many more years together!

Love always,

Ally

Why Blog?

I have been experiencing a late-twenties existential crisis of sorts.

What am I doing?  Am I doing enough?  Am I helping others?  Where is my career going?  Do I really want to study what I am studying?  Should I go back to school after this degree?  I don’t like homework, but I like school, but if I go back to school to study A, then I have to cross B and C off the list. What if I like B and C, too?!  I love Providence, but I’ve been here forever.  Should I move? etc. etc. etc.

Every BuzzFeed article tells you that your twenties are all about this mental turmoil and that things will work themselves out later on.  And come on, it’s BuzzFeed, so it has to be right!

Then I start to wonder about blogging.  Why did I get into it?  Do I have a purpose in blogging?  Has that purpose changed?  Is that okay?  Should I take a break?  How long of a break?  What am I doing with my life?!!!

When I first started blogging, my posts stuck to two general themes:

1.) It’s about dang time that we cure this disease!

2.) Can someone out there offer a solution to my insulin pump problems- because this whole “insulin-getting-into-my-type-one-diabetic-body” thing seems kind of important?

Number 1 still tops my morning and evening prayer request list, and number 2 has found a workable fix for the time being.

So, why blog?

It is difficult to give a canned, one sentence answer when someone asks me that question. The obvious terms of “advocacy,” “friendship,” and “hobby” come to mind quickly. But there is purpose beyond even those things.

When we blog, we keep the conversation going. No matter where we live, our healthcare systems could all use improvements. If we do not talk about diabetes, who else is really going to? Who else understands how it feels to rip a pump site out via doorknob entrapment, or to wait for a cure that has always been 10 years away with an automatic “reset” button at every tenth year mark? Leaving our stamp on (virtual) paper pays homage to this courage and comradery, this part of the story that may otherwise be overlooked.

So, why blog? Because #AllOfTheThings.

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!

Gmail Folders

In a half-hearted attempt to organize the chaos that is life, my Gmail is full of color-coded folders.

Diabetes is red, like blood and rage and sunsets all in one.

Grad School is blue, and there is a whole rainbow of colors designating each course in the sub-folders category.

Finance is green, and it is often ignored until it can no longer be ignored.

Quotes folder is pink.  Because “On Wednesdays, we wear pink,” a la Mean Girls.

Speaking of quotes, C.S. Lewis and Mary Karr (The Liars’ Club) are my go-tos.

“I have seen great beauty of spirit in some who were great sufferers. I have seen men, for the most part, grow better not worse with advancing years, and I have seen the last illness produce treasures of fortitude and meekness from most unpromising subjects.”

-C.S. Lewis, The Problem of Pain

“For me, everything’s too much and nothing’s enough.”  -Mary Karr

And one more for good measure because it reminds me of all of the bloggers/tweeters who I’ve come to love:

“She spoke with unhesitant authority, as though we had just picked up a long-running conversation in which her opinion mattered greatly. However frail the rest of her was, all her strength was in her voice.”

-Gail Caldwell

Happy One Month Anniversary!

Wow- it’s really been one month since Very Light, No Sugar got dropped off by the stork and fell into the internet world?! First of all, I want to say THANK YOU to everyone who reads my blog. While I am probably not a blogging superstar by any means, I am happy to report that SOMEONE OUT THERE READS THIS! That, in and of itself, has helped me immensely to not feel so alone with diabetes.

The same concern from the very first day of kindergarten- “Will anyone like me?”– translates over into adult life, too. So, to those who do like me, thank you. It is a pleasure to get to know you through our shared connection of diabetes, and through the general connection of our roles as human beings supporting one another. It has been quite therapeutic to have someone to talk to here, to hone my writing skills that my talented English teacher, Ms. O’Neill, spent countless hours instilling in me during high school, and to connect with all of you. I have thoroughly enjoyed reading your blogs, your tweets, your Facebook posts, and the like.

On the bad days, you are the motivation to keep on truckin’. On the good days, I am happy that we all celebrate our moments of victory together. I have learned so much from you- more than any medical book could have ever taught me. You helped to troubleshoot my pump issues, analyzed proper sick day protocol, and so much more. Your wealth of knowledge of one of the most complicated diseases out there never ceases to astound me. You know diabetes because you live diabetes. You cannot put a price tag, or even a graduate degree, on such intimate understanding of a chronic illness. I wish that we did not have to comprehend exactly what the other person means when it comes to diabetes, that we did not have our own diabetes vocabulary, that this would be cured overnight for us, and that none of us had to suffer difficult times. But if we have to go through it, I am so happy to be doing so with some of the best people around.

My one regret is that I did not start this process sooner. I suppose I had to build up the confidence to give it a go, and I am so happy that I did. It helps that those in the diabetic online community (#doc) were so welcoming in letting me be a part of their diabetes social media advocacy (#dsma) efforts by expressing what being diabetic means to me. I promise to pay it forward to other “newbies” in the future whenever possible. I want to specifically express gratitude to Craig @HumnPincushion and Jere @integraljere for rooting for me in the very beginning. Sometimes all it takes is knowing that you have a little support out there, and it gives you room to grow. You both exemplified this for me, and I have learned a lot from your kindness.

Cheers to you all, and keep doing what you do in terms of our ongoing diabetes discussion. It means something to someone out there, especially on the sick days.

Thank you for coming into my heart. You’re officially stuck there, just saying.

 

Love,

Ally

Sun’s out, pump’s out.

99.987% of the time that I change my insulin pump, I deal with stubborn high blood sugars for a few hours afterwards no matter what I do.  It frustrates the heck out of me, but in some ways I don’t blame my body.  I’m sure its internal dialogue goes something like this with every new poke and prod: Why the efffff does this girl hate me so much?!!!  More to come on pump site changes later, but my simplified theory for the time being is that there is a learning curve where the body adjusts to the new site.  Whatever, it still doesn’t make it any easier to endure…

Anyway, I woke up this morning around 5:00 am to see that my BG had dropped to 180 after being in the 250s post-pump change.  Progress, but not good enough considering I wanted oatmeal for breakfast.  My bladder wasn’t happy, either.  As I dragged myself out of bed to get to the bathroom and to take a mini-correction dose of insulin, the light from the window attracted my eye.  Diabetes generally has horrible timing, but in terms of catching the sunrise, it was right on point this morning…

Sunrise

True Life: I’m afraid of spiders and insulin, in that order.

Without fail, every summer night when I go outside to get in my car, a few yellow spiders are hanging out on the hood and roof.  When I approach, they look at me as if I am interrupting their block party.  After catapulting myself into the driver’s seat a la Angelina Jolie in Tomb Raider, I give myself the “spider pep talk.”

“Ally, you are better than this.  It’s one moment in time.  Try to forget about them and get on with your life.”

If only the “take your insulin” pep talk was that easy…

Every type 1 diabetic understands the rocky relationship that we entertain with insulin.  We can’t live without it, but sometimes living with it makes the act of living really, really difficult.  Like the times when it almost kills us at 3:34 am with a blood glucose reading of 45 mg/dL when we inadvertently over-calculate the spike effect of pizza for dinner by bolusing heavily.  Or the times when we hit a bad pump site at insertion and the cannula kinks and suddenly we want to drink water out of a fire hydrant like dogs do in 1960s cartoons.  Those times, and any other times that insulin doesn’t work perfectly.  Which is almost every time.  Because. insulin. does. not. replace. a. normally. functioning. pancreas!!!!  As we have all heard many times before, insulin sustains life, but it is not a cure for diabetes.

I will delve further into my own struggles with insulin as we progress in our blogger-bloggee courtship, but for now just know this: I sincerely appreciate the discovery of insulin and how much diabetes technology has changed over the course of my 23 out of 26 years of life spent as a type 1 diabetic.  Every time I go to Joslin Diabetes Center in Boston, I look at the murals on the walls in the lower level of the building which depict some of the history of insulin, and I am so thankful to be a diabetic “now” as opposed to “then.”  But I also fear and respect this life-saving commodity for the abusive lover that it sometimes is to all of us.  I have a tendency to “under-bolus” because of the trauma that over-bolusing has caused in the past.  Whew- the hardest step is admitting that you have a problem, right?

We are stuck in an ongoing oxymoron of sorts.  We can’t take too little insulin or our sugar will be high; we can’t take too much insulin or our sugar will be low.  And many of us grew up with the dreaded lecture from (insert whoever is applicable for you) ____________ (doctor, parent, school nurse, etc.) if we did not perform flawless algebra to compute the correct “insulin to carb to exercise to stress to illness to social life” ratios every time we took insulin.

But you know what?  Once I admitted that the problem was there, a doctor looked me in the eye and told me that it was okay.  Hers was not a lecture of blame.  She told me that I could forgive myself, that I did not have to spend the rest of my days in self-imposed “diabetic timeout.”  She told me that it was normal to be frustrated, that trying to play the role of a perfect pancreas every day was “not a good look” because it was essentially bullying myself, giving myself that loathsome lecture that I never really deserved in the first place.  But why give yourself that negative commentary when you fully understand that diabetes is not so cut and dry?  You are not an outsider to the disease, so do not treat yourself like you are.

I understand that I have the tools to do this, to improve and maintain my health. Not carrying “survivor’s guilt” of sorts is difficult for all of us who put in 110% effort every day only to have diabetes knock us on our asses with a herculean effort when we least expect it.  What truly matters is that we have already entered the boxing ring.  We have given ourselves the “insulin pep talk.”  We have calculated the carbs in the 5 crackers that we snacked on and pressed a few buttons on our insulin pumps to account for them.  And if we forgot to do so, or if we mistakenly took half a unit of Humalog less than what we should have taken to achieve an ideal blood sugar goal, so be it.  We have tomorrow, and the next day, and the next day.

And we keep showing up at the boxing ring ready for a fight, which is more than most people can say…

Coffee helps diabetic eyesight? Count me in.

According to the Journal of Agricultural and Food Chemistry, drinking coffee may help protect diabetic eyes from retinopathy.  See the article here: http://www.battlediabetes.com/news/diet-and-nutrition/coffee-could-prevent-retinal-damange-in-people-with-diabetes.

And how do we take our coffee, everyone?  Oh, that’s right- very light, no sugar.  😉