Merry Christmas and Happy 2020 from VLNS and friends! Wishing you peace for the holidays and in the upcoming year.
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.
Boston traffic sucks.
Especially in the summertime.
To save myself some unnecessary frustration, I did something that I do not normally do: booked a few local medical appointments here in Rhode Island.
Don’t get me wrong: In my graduate studies I met many nurses and healthcare folks who work in our small state and do a darn good job making patients well. But, having begun my care in Boston at a young age, I historically stuck with the endearingly-nicknamed “Mecca of Healthcare” for my treatment.
An hour commute is a small price to pay for the best healthcare on earth. I grew up in the Joslin waiting room, watching families fly in from all over the world to seek help for their kids. I accompanied my #MedX bestie, Danielle Edges, and her brave daughter, Alex, when they traveled to Boston Children’s Hospital from Phoenix, AZ, earlier this year. Trust me: Boston has it going on, and I am always cognizant of how blessed I am to live relatively close to these topnotch facilities.
The problem, though, is that my trips have not been an hour commute for as long as I can remember lately. Between traffic coming from and going to Boston, as well as time with the provider, I am usually gone for 6 to 8 hours per appointment. The bags underneath my eyes were growing larger by the day, and my attitude was strained. I needed a break.
So, I made a pact with myself: For reasons of self-care, I would book some “non-essential” appointments back home in Lil Rhody. While every medical appointment is certainly important, the urgency is not necessarily there for this local stuff, versus the “essential” diabetes tune-ups that I receive in Boston.
One hot afternoon in July, I gulped down my coffee and headed inside a RI dermatologist’s office. I have experienced itchy-then-painful blisters on my hands since childhood, and no doctor has ever been able to crack the code. If the best providers in Boston specializing in autoimmune disorders don’t know, how will anyone else? I naively wondered. But, with the commute being a mere 15 minutes, it was worth a shot.
I arrived early to fill out new patient paperwork as instructed. Parking had been easy- no expensive, overfilled parking garages. The receptionist and intake nurse were both friendly. And finally, it was time to see the doctor. She was kind and concise.
“Do you have a blister right now?”
“Yes. It’s healing,” I replied, extending my hand for further inspection.
“Oh, I know exactly what this is. It’s dyshidrotic eczema- common in diabetics. I’m actually shocked that you went through decades of your life with no diagnosis for this; how awful! I’ll prescribe you some hydrocortisone creams which should help,” RI Doctor advised.
+1 for the local expert!
I am a little miffed that Boston dropped the ball on this for so long, considering I looked like a burn victim who couldn’t hold a pencil in third grade due to the severity of the blisters. However, I am SO grateful to finally have an answer and effective treatment options!
Then it was time for the mole check. Melanoma does not discriminate between right arm or left arm, right butt cheek or left butt cheek. Almost every inch of the body is observed to ensure safety. Smart, yet still kind of awkward…
“Just so you know, I’m wearing a…” I began.
“A thong?” RI Doctor replied.
We’ve seen it all, honey, the observing nurse thought.
“Actually, it’s a continuous glucose monitor for my type 1 diabetes. It’s on my…”
*Ten seconds later*
“Oh! Good thing you warned me!” RI Doctor exclaimed, having located the sensor where the sun doesn’t often shine.
As odd as it was to have a conversation while naked in a room among new acquaintances, the professionalism and thoroughness of the doctor made the experience more bearable. I felt at ease knowing that the eczema- which has for years induced a stress response in my body, and, therefore, my BGs- would finally be tamed, and that the funky mole on my ribs was nothing dangerous.
“When were you diagnosed with type 1?” RI Doctor asked.
“Just before my third birthday.”
“And your parents caught it early?”
“Early enough that I survived. But I was in DKA.”
And then I thought again about the little boy whose name I still do not know, who passed away from complications of T1D diagnosed too late, just a few days before my arrival in the same ER.
“Wow. That must have been so hard,” RI Doctor wondered aloud.
“That must have been so hard. It is so hard,” she pushed.
“It is…” I admitted.
And there it was: the truth, exposed. Diabetes is hard. But we’re still fighting.
Sometimes localized empathy makes all the difference.
Today’s Dblog Week topic is about tips and tricks. There are many nuances to my diabetes management. This injections trick is probably my favorite:
1. Download the mySugr app.
2. Log blood sugars, insulin injections, carbs, and more in mySugr.
3. If your insulin pen does not have one of those fancy calculators indicating when you last took insulin, create your own system to minimize the risk of double-dosing, or forgetting to dose.
4. For example, in the photo shown below, mySugr would have indicated that I already took 3 boluses of fast-acting Humalog today. For my fourth shot of Humalog, I move the green hair tie up to the #4 drawn in marker on the insulin pen. Later, when I take my fifth injection, I will move the band up to #5 on the pen. And so on.
*If I exceed 8 boluses in one day, I simply move the hair tie back down to #1 (which becomes #9 in this case, and according to my logbook information in mySugr.)
**Handwriting was never my strong point. Sorry, Catholic grammar school nuns!
5. Injections are a blur when your body has endured a lifetime of pokes and prods. This system helps me to keep track of which injection I am on for this particular day. My hope is that sharing this trick helps someone else. Get creative with those hair ties! 🙂
Disclaimer: This is my own experience; consult with a medical professional before making changes to your diabetes management.
Admit it. You clicked. But I pinky-promise Very Light, No Sugar is not about clickbait. Instead, let’s have a good time with this one.
The Discovery Channel hit a homerun with its series Naked and Afraid, which drops made-for-TV couples in the middle of nowhere and challenges them to survive together with few resources. Heavy emphasis on few resources. Because oh yeah, the individuals are naked while doing all of this, their not-so-PG-features blurred out with video editing and then broadcasted all over cable television.
I’d argue living with chronic illness presents similar trials. At diagnosis time, your entire world was rocked. You were thrown into unchartered waters with a leaky inflatable raft and asked to somehow make it all work. And you did. Some days are better than others, but even on the worst of days, you’re still floating.
Picture the tabula rasa of #doc Adam and Eve in the Garden of Endocrinology. They have no shame. They have not experienced the “diabetes police,” the misinformed stereotypes, the media onslaught. They are simply there, together. And naked. Except for those button-looking health technology thingamajigs attached to their skin.
Eve may have come from Adam’s rib, but the missing aspect of the story is that she came wielding prehistoric weapons of mass destruction: CGM inserters. Hence, Adam’s rib pain. From there, they took turns replacing insulin pump infusion sets for one another, the very first example of putting the “care” in healthcare. There were no deductibles or tense waiting rooms. This was solely Adam and Eve, charting the course together.
When they found the apple, they wondered how much to bolus for the carbs.
“This looks like a McIntosh. What do you think? 15 grams?” Diabetic Eve asked, squinting at the red and green hues.
“I don’t know. That’s kind of big. Won’t Endo yell at us if we don’t get this right?” Diabetic Adam fretted.
“Don’t be a wuss, bae,” Diabetic Eve retorted.
And so they each took a bite, tossing the apple back and forth. A few minutes later, the CGM beeped, its graph entering the yellow “high” territory just in time for the dreaded Endo appointment.
As I previously wrote, I received my Dexcom supplies last week after fighting for far too long to obtain them from various avenues.
The new Dexcom transmitter has been great, from what the box still holding it tells me. After all of the drama in reordering the Dexcom, I would have bet money that I’d insert a sensor and begin the 2-hour warm-up within minutes of the package delivery.
But that did not happen. I do not exactly know why, but I have some educated guesses:
I got so burnt out by the process that I wanted nothing to do with health tech once the battle was won.
This is not for lack of being thankful; I am eternally appreciative of the positive impact of diabetes technology. Instead, this is about needing a break, to not think about something that consumed my thoughts for weeks as I awaited its arrival. Considering I use insulin pens instead of an insulin pump, my body is momentarily device-free. Now I’m working on such a literal and figurative diabetes reprieve for my psyche, too.
Perhaps the tech hiatus is also a “screw you” to our ridiculous, convoluted system. The healthcare loop-de-loop may have briefly stripped me of my dignity, but this tech vacation affords me some “control” again. I have the ability to make my own decisions about my body, mind, and soul. This is the first step in putting my anger aside to do so.
Years ago, the conversation would have played out like this:
“You’re so stupid! How can you be so ungrateful? After going through all of that to get a new Dexcom, and spending all of that money, you’re just going to let it collect dust in the corner?!! Just so, so, stupid. So selfish.”
Many conversations with compassionate friends and healthcare providers later, I know now that the people who said those harsh things to me could never handle the constant nature of diabetes if they had to live it. I can. It is not always graceful, but I do it. I’m not stupid. Or ungrateful. Or selfish.
Tired? Yes. But every new morning is a “reset button.” This time I will not be pressing the button on a tech device; this reset button is an emotional one that cannot be objectively quantified. Its name is Freedom.
Diabetes is a catch-22, a continual give-and-take, a balancing act on a tightrope that is jostled every few minutes. Sometimes we have to weigh the risks and benefits, the pressing concerns and the long-term impacts. In doing that, I recently realized that my emotional needs trump the physical safety ones provided by Dexcom, in this immediate moment.
Although I miss Dexcom alarms alerting me to problems overnight, I have to trust my own intuition again. Strip it down, back to the basics, Diabetes 101. Simplify.
I set nighttime alarm clocks and hope that now is not my time to go via an unshakeable low blood sugar in my sleep. And if it is my time to go, well, that’s mostly in God’s hands, anyway. My gut tells me that a Dexcom break for a few weeks will do more good than bad, so I’m running with that idea. I am trusting in Him, and trusting in me.
When I am ready, I will definitively return to CGM. Without Dexcom, I find myself looking back at my apartment whenever I climb into my car, sensing that I left something behind, like I am reaching for a familiar hand that suddenly is not there. I miss slipping into Dexcom’s added diabetes security blanket like it is a favorite pair of boots, the perfect fit.
For now, though, I am going to enjoy the little things again: the long, hot showers; the consumption of McIntosh apples with old-fashioned carb-counting and blood sugar checking a few hours later; the silence of a room devoid of vibrating tech devices; what it feels like to be Ally in her own skin- skin that is entirely her own real estate right now.
Like Diabetic Adam and Eve, I am naked and trying my best to remain strong, and good.
I am naked and not-that-afraid.
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.
“What’s that blue circle on your Facebook picture?” is always a loaded question.
Firstly, as the international symbol of diabetes, the blue circle is like the communal social media head nod which symbolizes, “I get it,” to others like us who encounter the image.
Not everyone chooses to flash the blue circle, and that is okay, too. We all cope with this disease in our own ways.
Secondly, let’s be honest. The blue circle magnifies the attractiveness of any picture. It’s an unwritten rule. Blue circle = automatically cool.
Thirdly, there is a tale of strength and perseverance behind every blue circle. The story goes something like this:
When speaking to someone not intimately familiar with diabetes, I want that person to know that diabetes is not anyone’s fault. If you want to blame something, point the finger at rebellious islet cells, environmental factors, viral triggers, genetics, and the perfect storm of other elements. But please, do not blame the human being.
Society preaches the message that diabetes is a disease brought on by poor choices. “You ate too much sugar, so you are to blame for your type 2 diabetes. Just lose weight and you’ll be fine.” Phrases like these are tossed around daily in the movies, in comic strips, and in casual conversation. Yet the reality is that if any type of diabetes were so simple to acquire, the whole world would be diabetic.
Type 1 diabetes, an autoimmune disease, does not discriminate according to who collected the most Swedish Fish from the birthday party piñatas as a kid. Instead, it strikes us innocently and without fair warning. We have lost children with their whole lives ahead of them this year because our healthcare system failed to identify the warning signs of diabetes in time. Extreme thirst, blurry vision, weight loss, frequent urination, and other symptoms should ring a “diabetes bell” in your mind after reading this. When in doubt, we implore you to play it safe and see a doctor immediately.
There are other types of diabetes, too: gestational diabetes during pregnancy, cystic fibrosis-related diabetes (CFRD), latent autoimmune diabetes of adults (LADA), maturity onset diabetes of the young (MODY), and other offshoots of the disease process.
Allow me to play devil’s advocate for a moment. Although no one singlehandedly causes any form of diabetes, let us pretend that the overly-simplified media theories are correct: Ally eats a cupcake, so Ally deservedly acquires diabetes. I “deserve” to take ten shots a day for the rest of my life. I “deserve” to wake up at 4:23 am with a blood sugar of 52 mg/dL, half the normal value, fighting to live- if I am even lucky enough to wake up before it is too late.
Now, substitute someone you love in place of our fictional Ally character. What if Ally was your sister, your father, your favorite high school Math teacher, your best friend? Can you accept the status quo of a world in which someone you love has to go through all of that to survive each day? Could you handle the emotional burden? Wouldn’t you get upset, too, when the severity of the battle was diminished by a corny joke on a TV show? Isn’t the pain still there no matter what caused the disease? Aren’t these people still important to their loved ones?
But, it’s no big deal because fictional friend/sister/father/teacher chose to eat the cupcake, right? (I’m taking my coffee with a heavy dose of sarcasm today.)
When we rationalize away the seriousness of this condition by poking fun of Wilford Brimley commercials, what we are really saying is that this is too much for our society to handle. If we laugh it away, we mistakenly presume that diabetes will not touch our lives at some point. Statistically and scientifically-speaking, that is a losing bet to make.
We must, instead, be brave and face the truth that defines this disease: Diabetes is no one’s fault, it is a profoundly-complex condition which is difficult to tame, and we owe it to ourselves and to future generations to lessen its toll by advancing technology and research.
The blue circle represents any of us and all of us. We have endured thousands of needles in our lifetimes. Diabetes changes its mind every day. Given the same scenario, what works on a Monday may not work on a Tuesday. Insulin sustains life, but each dose is an educated guesstimate. One miscalculation can be deadly.
We do not tell you these details because we want you to have a pity party for us. We can do anything. One of us, Sonia Sotomayor, sits on the Supreme Court of the United States. Others have run marathons, graduated from medical school, or written books. We have an enduring human spirit which rises to the occasion of fighting this disease every morning.
This November 14, when you see a blue circle on World Diabetes Day, do not simply scroll right by it. Pause and look at the faces behind the superimposed shapes. Recognize the human being who is affected by diabetes, who is more than a blue circle can ever truly describe. Marvel at his or her resilience. Perhaps donate your weekly coffee fund money towards a diabetes cure effort. Walk with us. Pray for us.
And the next time you hear, “What’s that blue circle all about?,” respond with a story about one of the strongest people you know- someone you love who lives with diabetes.
^ Longtime type 1 diabetics, having fun despite diabetes ❤