A Few Good Nurses

For a couple of years, I have kept this story close to the vest, mostly because I felt quite vulnerable sharing it.  I still feel sensitive, but the timing is now right to tell the tale.  We are seeing many headlines in the news about nurses today.  As far as diabetes blog headlines go, I hope you’ll take a few moments to read this one and to thank a deserving nurse.

Winter.  I had recently started grad school and I was optimistically trying to do #AllOfTheThings.  This included a regular, intensive gym schedule, a disciplined diet, and very little sleep- just the right ratio of “healthy” ingredients to convince myself that I was not running on vapors in reality.

I booked an appointment with my diabetes nurse, as I was experiencing more frequent insulin pump site problems.  We needed to find viable locations for site changes, or perhaps to discover a different type of infusion set that worked better for my body type.  Also attending the appointment would be a nurse employed by the insulin pump company.

At the appointment, we had all of our diabetes ducks lined up in a row: various infusion set types, reservoirs, alcohol swabs, IV prep, and Humalog vials.

Historically, I stuck to the abdominal area for pump site changes.  We wondered if significant scar tissue had developed, causing the numerous pump site failures.

“Alright, can I take a look at your sites?” D (diabetes) Nurse asked.

“Yeah…” I replied, eyes darting to the floor.  I felt weak as I handed the control of the situation over to the healthcare professionals.  It’s my body, but now I have to trust someone else with it.

D Nurse gently felt around for scar tissue, but did not find much despite my long-term insulin pump usage.  P.S. (pump site) Nurse from the pump company inspected the same areas and came to the same conclusions: no scar tissue, but not much pump site “real estate” to work with.

“Geez, no wonder these sites are hurting you.  You don’t have much padding to use!” P.S. Nurse said, making eye contact with D Nurse as if to communicate, “This might be a difficult appointment…”.

In terms of pump sites, my extra sit-ups after the gym workouts were not helping matters much.  (Now that I am in my last semester of grad school, I assure you that extra sit-ups are a thing of the past!)

“You can try leg, back, or upper butt sites whenever you feel comfortable.  But for today, if you want to continue with the stomach, we can do that,” D Nurse said.

“Okay,” I replied nervously.

We all knew what was coming: the “trial and error” method of identifying infusion sets that would work well for me.  The nurses had to be sure that I was inserting the sets properly and that we were not overlooking a better option.  Like many diabetics, I have endured thousands of needles in my lifetime.  Although unpleasant, at some point you get accustomed to the momentary pokes and prods and you do not dwell on them.  Regardless, even at the age of twenty-five, it was a harrowing thought to know that my stomach would soon be a pincushion.

First, I showed them how I inserted my sets.  The process was automatic and quick.  The nurses agreed that I performed every step correctly and we could cross my name off the list of possible suspects causing the site failures.

“Your skin is tough- literally and figuratively.  I think you may be getting some resistance from the insertion devices, which could be kinking the cannulas as they go into your body.  Can I try an insertion?”  P.S. Nurse asked.

I nodded and allowed her to try without protesting.

“Okay, that was good but I felt the kick-back with the inserter.  What if we manually put the site in?  You could insert the needle by hand, without an insertion device, and perhaps you can curtail the bent cannulas that way,” P.S. Nurse suggested.

Whaaaat?!  I wanted nothing to do with that idea, but was also willing to try anything to get the sites to work better.  I made a feeble attempt at manual insertion and watched as the needle bounced back off my skin.  Defeated, I slumped down in the chair.

“Do you mind if I try it?” P.S. Nurse asked.

I liked how she always sought my permission before attempting anything.  The control was still in my hands to an extent, even though she now held the needle.

“You’re doing so well.  You’re so brave,” D Nurse whispered.  She wiped the dried blood off of my stomach using alcohol swabs, distracting me while P.S. Nurse prepped for the final insertion.

And just like that, it was over.  P.S. Nurse swiftly launched the needle into my side, and I did not feel more than a minor pinch.  We high-fived and hugged afterwards, proud of our hard work.

That appointment lasted a few hours.  While it may not have been as draining as receiving chemotherapy or undergoing heart surgery, I can tell you truthfully that it was an exhausting afternoon for all of us.  Emotions were high in the face of uncertainty, and we had to trust and communicate with one another.  If it hurt, the nurses were right there to make it hurt less.  Likewise, I had to admit when it did hurt, when I did need their help.

In my lifetime of medical appointments, I have felt the cold stainless steel of stethoscopes from nurses and doctors alike.  I can attest to the other tools that nurses use: infusion set needles, alcohol swabs, bandages, medical tape, bear hugs, TLC.  A few good nurses can change the entire course of an appointment, making it go from “scary” to “It’s going to be okay” as they work steadfastly to heal their patients.  Nurses often handle the difficult moments behind the scenes, with little fanfare.  They comfort patients like me when we are scared.  They make it hurt less.  And they deserve to hear “thank you” more often in our society.

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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

The Balancing Act

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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.