Many thanks to the talented Chris Snider for having me on the Just Talking Podcast this week. We discussed everything from the #doc to mental health to #MedX to how we chose our respective website names. Take a listen here!
***Update: The survey is now closed.
Thank you so much to everyone who participated and/or helped to spread the word!
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Please read the bold text of the cover page, as it is very important to our data collection.
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My insulin pump administered ten units of Humalog in my sleep! I must have rolled onto it the wrong way, and the buttons got pushed! HELP!!!
I splurged. I drank the entire island-themed mixed drink with all of the sugary syrup, and I forgot to bolus. Where is the insulin vial that’s normally bouncing around in my purse?
My meter says “HI” but it’s not the same friendly “Hey what’s up hello” a la everyone’s favorite rapper, Fetty Wap. I could drink an entire gallon of water.
“Your GFR results were funky. We’re going to do this Fancy-Sounding-Medical-Test to further evaluate things. The nurse will be in soon with a mile-long needle to stick in your back.”
“Can’t we wait a minute for Dr. Z to arrive? I don’t want to do this before talking to her.”
“This is healthcare, honey. Time is money. We can’t wait for another doctor.”
“What are you doing?!! Why would you pull your car over in such a dangerous location? There is a blind spot around this curve in the road! Another car could hit you! So, so stupid!”
“I’m low.” Even if I’m not low, maybe that reasoning will be enough to make him stop this time.
Must. have. food. Hamburger. Fries. Soft serve vanilla ice cream. Anything. The words aren’t coming out when the cashier rings me up…
I’m so tired of needles. It’s not even the momentary pain. It’s the voluntary submitting of myself to another human being whose societal title raises him or her “above” me. Doctor. Patient. Needle. I’m not signing up for this again. One month off from appointments won’t make or break my health.
But then the baby kangaroo hopped over to me. Overcome by its cuteness, I hugged it tightly. Baby Joey reacted by biting my hand, slicing into my thumb. Mom tried to catch him so we could test for rabies, but he bounced away into the woods.
Rabies shots? No, please no more needles. Can we just wait a little bit? My doctors will be back from vacation soon and then we can move forward with the shots. This is supposed to be one month off! Please! I promise I’ll be good.
I always assumed other diabetics dreamed about diabetes as often as I did, until an impromptu and unscientific Twitter inquiry informed me otherwise. Some #doc members replied that they had only dreamed of diabetes once or twice; others shared a few humorous tales inspired by overnight hypoglycemia.
[After-Publication-Note: The above-mentioned were just dreams. All is well.]
I am in the Twitter minority that dreams of diabetes on a weekly basis. The snippets illustrated above come back to one resounding theme: There is an emergency, the odds are against me, but I somehow am responsible for getting myself out of trouble. Life with diabetes in a nutshell, if you ask me. We just look pretty damn brave while we live it every day, so others do not always notice our superhero capes.
Along with some valuable assistants, I have moved mountains to quell my anxiety in recent years. Anxiety will always be there, but it does not have to be the loudest voice in my head at all times. What saddens me with these regular, scary dreams is that my body is subconsciously in survival mode even when at rest. Diabetes never sleeps, and neither do we.
The good news is that these dreams have value. The incessant cravings in the McDonald’s line? Yup, my body is signaling that my blood sugar is low. Eventually a light switch goes off and I jerk awake, covered in sweat, just in time to hear the CGM alert going off and to gulp down the juice on my nightstand.
The kangaroo? Well, I have to be honest with myself: Although I appreciate the wonderful healthcare I receive in Boston, everyone needs a break at some point. I recently booked a few non-essential appointments closer to my Rhode Island residence in an effort to cut some traffic corners where I can. For now, I’ll reserve Boston for the vitally important appointments only.
But as much as I want to pretend that I can handle all of this on my own right now- during the self-prescribed “month off”- the reality is that I still need the support of my healthcare team.
Can’t we just wait for my doctors and nurses before the rabies shots? Can’t they just take it all away- diabetes and injections and highs and lows and fear- just for a few minutes? Please.
I don’t say it enough, but I’m braver with their help.
Dictionary.com defines the verb as “
At that rate, why wouldn’t we spare roses this February, and perhaps all year long?
The premise is simple: click here, donate $5- the cost of a rose you may normally give to a loved one on Valentine’s Day (or, set up additional monthly donations if you can!), and save a child by providing life-sustaining insulin through your donation.
If you are reading this blog post from a cell phone or a computer screen, chances are you have $5.00 to spare. If you do not, that is okay, too; instead, please help to spread the word about #sparearose.
What is $5.00 worth?
-one medium coffee and one donut from your local coffee shop
-half of a movie ticket (What use is that?!)
-crappy red wine and a headache you don’t need, anyway
-an overpriced bottle of water at a sporting event
*****-And oh, yeah, A LIFE!!!!!!!!
Close your eyes and think of a time when you did not receive a viable amount of insulin for a few hours. We have all been there: a kinked insulin pump cannula, diabetic ketoacidosis (DKA) during diagnosis or severe illness, or whatever the case may have been. We have felt the heartburn and nausea of high ketones, the unquenchable thirst, and the longing for comfort that takes too long to get there.
For most of us, those days represent acute instances of distress. Scary, yes. Life-threatening, sometimes. But if we are reading this blog post today, we somehow escaped diabetes’ wrath and are feeling better thanks to the insulin taking up all of the shelf space in our refrigerators.
Without insulin, kids in developing countries know that type of suffering intimately. Those of us who are more fortunate cannot lay our heads on our pillows at night and be okay with that. We understand diabetic ketoacidosis. We have a moral obligation to curtail DKA as best we can before it senselessly takes any more lives.
If my words come off too harsh here- well, it is a risk I am willing to take. If our moral obligation leaves us momentarily uncomfortable in our realization of its truth, so be it. These kids are more than uncomfortable as they await insulin that they should have to begin with. We owe it to them to do the right thing.
If you can, please spare a rose this February. Through the simple act of sparing, we can dry so many tears.
“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 ❤
A few weeks before attending Stanford Medicine X (#MedX) 2015, I wrote down my thoughts about life in the “Before #MedX” stage. I knew that this experience would be life-changing, inspiring, and empowering, but if I multiplied those factors by a billion, I still would have underestimated just how powerful the #MedX experience was for those of us who were so blessed to be there.
We talk and tweet a lot about the big moments at #MedX: when Cyrena Gawuga brought the crowd to our feet during her Ignite! talk, which chronicled her personal growth in the face of what previously seemed like a failure; when Abby Norman carried us through the whole spectrum of feelings- from hysterical laughter at her wit and humor to blinking back tears in awe of her journey to get properly-diagnosed with endometriosis and appendicitis; when Julie Flygare illustrated that anything is possible despite narcolepsy; when we marveled at the strength and determination of Emily Kramer-Golinkoff, who is improving the lives of those with cystic fibrosis as they race against time (side note: I was totally “fangirling!”); or when Ben Bahan taught us that he can communicate and listen (and do so with a sense of humor that rivals Amy Schumer’s!) despite being deaf.
All of those moments were just- Wow. My fingers couldn’t tweet the powerful one-liners fast enough. Every sentence spoken was just that darn spellbinding.
As much as #MedX completely renews your sense of purpose and advocacy with the big headliner stories, it also reinforces those concepts in the little, behind-the-scenes moments.
I received support from #MedX before I even stepped foot on the Stanford campus. When a good friend’s child was diagnosed with a serious condition recently, I sought advice on what to say and what not to say (from a 2015 ePatient who I will not name here to respect my friend’s privacy; ePatient, you know who you are- thank you). The #MedX advisory board and administrative staff made sure that all of the i’s were dotted and the t’s were crossed to ensure a pleasant experience for conference attendees. #MedX alums were always available to yield my rookie questions at all hours of the night. At the ePatient dinner, our hearts overflowed with compassion and respect for one another. The list of human goodwill goes on and on when it comes to Medicine X.
From a diabetic online community (#doc) standpoint, I enjoyed talking about the highs and the lows with Chris Snider, Amy Tenderich of Diabetes Mine, Sophie Thacher, Meredith Hurston, and Dana Lewis- who carried her (artificial) pancreas in her purse, which automatically ranks her pretty darn high in my book of praise! It was refreshing for me to be around people who understood without me having to really say anything, who could swap campfire tales of funny diabetes moments, and who were so passionate about our #doc advocacy endeavors.
The #MedX workshops were particularly informative and interactive. Dr. Bonnie Feldman enthralled us with her autoimmune disease research, and we pledged to keep in touch and work hard to crack the autoimmune code as a community. My good friend and fellow ePatient, Danielle Edges, held a workshop on eHealth in pediatrics, which featured her family’s brave story of caring for a daughter with a congenital heart defect called heterotaxy and another daughter who is secondarily impacted by having a sibling with a chronic condition. It was so uplifting to witness this Mom, who would go to the ends of the earth to help her family, whose humor remained intact in the face of challenging circumstances, and whose loyalty and friendship is beyond measure.
#MedX is renowned for bringing together the various participants in the realm of healthcare. We hear the term “Big Pharma” thrown around quite often online. But I can assure you that the pharmaceutical representation at #MedX was laser-focused on getting the little details right and connecting with the patients whom they serve. I was asked, “What can we do for you? What message do you want us to hear from your patient perspective?” I was so humbled by their willingness to listen and their desire to drive innovation.
There were also the little moments at the Sheraton pool, where ePatients and other #MedX attendees dined after the day of conference events concluded. Nisha Pradhan’s passions for advancing anosmia research and providing an empathetic medical experience were contagious. Britta Bloomquist taught me about life in northern Minnesota and juggling Lyme disease and ankylosing spondylitis. Kristin Coppens was an example of grace and determination while managing multiple chronic conditions.
Natalie Abbott and her service dog, Cassius, educated us on Moebius syndrome, a rare disease only diagnosed in 1,000 patients thus far. Natalie and Cassius were the epitome of a good team; they worked together seamlessly, never complaining. I gained perspective that I must admit I very much needed by watching Natalie and Cassius together: Moebius syndrome is a passenger along for the ride in Natalie’s very-accomplished life, not the other way around. We can apply that same lesson to every sort of adversity in life. Thank you for inspiring me so much, Natalie and Cassius!
There are so many other big and little moments from #MedX which I would love to highlight, but the truth is that I could write a novella about how great each individual who attended is. I would like those reading this blog to know that #MedX is a phenomenal experience because of the positive, enthusiastic, dare-to-dream-big nature of its attendees. We are without a doubt going to change healthcare for the better. Heck, we already have, and we’re just getting started.
The best way to summarize what #MedX means to me is to leave you with a story. (We really like stories at #MedX!):
I woke up having some concerning diabetes issues on the first day of my #MedX experience, the pre-conference Healthcare Innovation Summit event. To be honest, I felt quite ill. My mother convinced me to take the shuttle to the conference location. There would be plenty of healthcare geniuses around if I needed assistance, she advised. How very, very true.
As the day went on and I took many insulin injections, my diabetes situation began to improve. The group disbanded for an afternoon coffee break, and I walked to a bench in the shade of the Stanford campus. Eventually, a professionally-clad woman sat down on the neighboring bench.
“This shade is so welcome,” she noted.
“Absolutely, and it’s nice and quiet here- a good opportunity to take a breather,” I replied.
And so we chatted. She was at #MedX representing her healthcare company’s new technological product. Her excitement for the tech’s potential to improve lives was palpable, and it was clear she loved her work.
“Can you explain to me what an ePatient is?” she asked.
“We’re all here to advocate for our respective causes. We believe wholeheartedly in improving healthcare, in humanizing the story.”
“Is diabetes… hard? As in, does it impact you a lot?” she asked tentatively.
“Sometimes…,” I admitted. “We fight hard for our health every day. But we believe in a brighter future. Isn’t that why we’re all here to begin with?”
And with that we walked back towards the conference hall, two people on different sides of the healthcare equation, united by a common ambition to help others.
That’s what #MedX is all about. It was my greatest honor to attend this year, and I would like to sincerely thank everyone at Medicine X for sharing their perspectives. Keep doing big (and meaningful little) things.
Disclosure: I attended #MedX on a partial scholarship as an ePatient delegate. Opinions expressed here are strictly my own.
^ With the world-famous #MedX mascot, Zoe Chu! ^ Excited for #MedX!
This blog post appears as part of Diabetes Daily’s Diabetes Social Media Burnout Day.
Much like diabetes is a balancing act between the highs, the lows, and everything in-between, so, too, is social media advocacy.
I find myself pulled between extremes: excited when having a great day, frustrated when things go awry. How much should one vocalize these feelings? It is no secret that I wear my emotions on my sleeve, especially on Twitter. But I always hope to lift others up by being transparent with my diabetes experience, rather than to tear down anyone’s mood by being too-transparent in a Negative Nancy moment. Again, life is a balancing act.
On the one hand, I am so proud and thankful to be a part of the diabetic online community (#doc). I want to scream it from the rafters so that my non-#doc world knows how great it is. But on the other hand, I love my #doc cocoon just the way it is: bursting at the seams with people who “get it,” devoid of judgment from those who do not “get it.”
The #doc may have differing opinions on various topics (Should we inhale insulin, or inject it, or pump it, or pray harder for a cure?!!!), but at the end of the day, we all understand without needing to say much. We know how tiring it can be when the CGM line continues to drop down no matter how many juice boxes are guzzled. The non-#doc sphere requires some introductory, explanatory information in these, and similar, circumstances.
For example, there is a large difference in screaming, “I’m high!” to my diabetic relative, versus yelling the same phrase at a baseball game and receiving some weird looks in response. I can Instagram a picture of an empty Juicy Juice box on my nightstand, and the #doc immediately understands. Whereas I may need to explain to my non-diabetic friends why overnight hypoglycemic episodes can be dangerous. Most of the time, I enjoy educating others about diabetes. But especially during times of burnout, I simply want to get on with my day and push diabetes aside.
There is a weird juxtaposition of advocating outside of #doc territory. I often want society to respect diabetes for the jerk that it is, so I may post a picture of a CGM graph showing 55 mg/dL with a slanted down arrow. As in, “Wow, I survived that sh*t! Heck, yes!” The media does not always portray just how strong we are. We deal with life-threatening lows and highs, and we start over the next day. Some of us have not been so lucky, and we mourn their losses and raise awareness for their stories.
Yet these measures of advocacy often draw out the questions that make my skin crawl. “Is your diabetes still bad?” You’re missing the point. Diabetes is an enormous Swear Word, a complex beast that we do our best to tame. If I’m talking about diabetes often (I am), it is because I want you to hear my story and to respect it. The non-#doc Wilford Brimley anecdotes provided in response often add to the feelings of burnout. Social media is overwhelming sometimes, and I can be my own worst enemy when in a cranky high blood sugar-induced mood.
Diabetes isn’t Burger King, and we can’t always have it our way. I cannot simultaneously expect the non-#doc world to understand more about my personal life with diabetes if I do not let them peek inside my #doc cocoon sometimes. They know Ally already, but do they know that I take my coffee very light, no sugar? Some do, and some do not. In order for me to be a better advocate, I do not have to tell every detail to everyone. But I may choose to explain that I am grumpy due to high blood sugar or why I believe so wholeheartedly in finding a cure for diabetes. Achieving that balance of what to share and when to back away from over-sharing can be a difficult tightrope to walk in the heat of one’s emotions.
Generally, I find the #doc to be a very supportive environment, willing to listen to each person’s shared, yet unique, experience with diabetes. If I ever feel stressed out about blogging, then it is simply not the right time to be blogging. It is a purposeful hobby which I enjoy greatly, and I never want it to feel forced.
As for “diabullies,” or internet trolls, or cinnamon-cure-enthusiasts, I have been tangled up in a few instances where no matter what I said, the hole seemed to get dug deeper with them. My intentions here will always be good, and I believe that we should all be able to respectfully agree to disagree if we choose to do so. If a person hiding behind a keyboard is especially cruel, I try to remember that said person is hurting. Bullies target others to distract from their own pain. It does not make it right, but we are all human and we all make mistakes. We should hope that internet bullies one day find the type of love and support that we have within the #doc.
So there you have it: the diabetes blogosphere balancing act. Am I high? Am I low? Am I happy? Am I sad? Should I advocate harder? Should I let others into the #doc cocoon? Is that a friend? Is that a bully? Do we all experience our own versions of diabetes, whether as T1D, T2D, LADA, MODY, CFRD, caregiver, friend, family member? Aren’t we all in this together? And aren’t we all in it for the right reasons?
I believe that we are indeed here for the right reasons, and we share our stories as they unfold. If you need to take a #doc break because you are genuinely burnt out, then by all means, go on hiatus in the spirit of maintaining authenticity. That, in and of itself, can be a valuable aspect of your own diabetes story.
It has been almost one month since I took a step back from blogging. I can’t quite say the same for live-tweeting my stream of consciousness, but I did my best to avoid reading feverishly about diabetes technology as promised.
My tiny blogosphere roar does not make the world go ’round. But, for me- and hopefully for the people who read my blog on occasion- Very Light, No Sugar will always be my own little piece of the larger diabetes puzzle. Blogging is how I shed light on the thoughts that have bounced around in my head for over 24 years of living with type one diabetes. Reading others’ blogs has been empowering and unifying; many of those same thoughts bounce around in other heads, too. Putting my feelings on (virtual) paper makes them real- a part of our shared experience of diabetes. Changing up the blog post pace allowed me to reexamine why I chose to blog in the first place.
By taking a step back, I was able to let others step in. Before the mini-hiatus, I probably did not realize just how much I needed those little moments with big meanings because I was caught in an overwhelmed, overtired haze.
Emailing back and forth with various #doc buddies who offered unconditional support and understanding, paying more attention to the humorous side of diabetes via the Twitter and Facebook jokesters, and spending a few days on Cape Cod with my family allowed me to hit the figurative “reset” button. And let me tell you, the “reset” button is more refreshing than pounding the “snooze” alarm three times each morning.
It’s good to be back, even if only at “training wheels” pace for the time-being.
***Update: The survey is now closed.
Thank you so much to everyone who participated and/or helped to spread the word!
Those 18 or older with diabetes of any type: Please consider participating in research for my current grad course by taking this 5-10 minute survey here:
My favorite post is one that mostly flew under the radar: 24. P.S. I forgive you.
This post describes how I chose to forgive diabetes for the bad and to reflect on the good I have received during my 24th “diaversary.” While it was not my most popular post of all time, it openly represents my emotions on a day that is always bittersweet.
Stephen’s short yet powerful comment on this blog post meant a lot to me, as did another I received via Facebook from the mother of a diabetic child who thanked me for writing the things that her son could not yet articulate at a young age. Those little moments make blogging so worth it. We can use our words to connect with and encourage others who face similar obstacles each day. #DOC in a nutshell!