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.

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

IMG_0283

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. 

Signs

Sometimes God taps you on the shoulder and says, “Pay attention!  I am right here.”

  
  
^ A moth-type creature with a cross on its back on the steps of my apartment building.  Google tells me its nickname is “the Jesus moth.”  Aptly so. 

I’ve never seen a Jesus moth until just now, coming home after hours of Boston traffic and feeling sorry for myself despite an otherwise decent day.  

Ironically, I told my doctor that I needed to pray more a few short hours ago…  

“Yup, you do!!!” -God

Time to change my perspective before I miss out on the good stuff. 

Adirondack Chairs in the City

No, it’s not a dramatic Nicholas Sparks novel.  It’s just what happened yesterday.

I’ve been waging an epic battle against the “Hormonal Hell Highs”- that thing that happens for the younger female crowd once a month and is emotionally and physically draining, diabetes aside.  But then diabetes hears the terms “emotionally and physically draining,” and it is all about joining the party.  It’s diabetes.  That’s what it does.  It’s just a fact.

If there were a diabetes Tampax commercial, it would show a bunch of insulin-pump-wearing, happy women prancing around the neighborhood with picture-perfect CGM graphs.  Let’s get with the program here: That isn’t reality for most of us.  Not many things are as frustrating as doing everything you’re supposed to do- checking your blood sugar often, increasing boluses, raising basal rates, trying to keep Grumpysaurus Dex in its lair, and more- and seeing that steady yellow line indicating “high” on the CGM for hours and days on end.  Some months are better than others, and in typical diabetes fashion, what works one month rarely applies to the “hormone play date” of the next month.

For someone who is accustomed to working hard and seeing that hard work pay off in terms of job opportunities, GPA, and other objective measures of “success,” it has been a tough pill to swallow- rather, a painful injection of insulin to take- to make peace with the fact that I am trying my best and those blood sugar numbers, although elevated, are the best that I can do right now.  I am not rolling over and letting the diabetes waves swallow me.  Instead, I am throwing on the insulin life preserver and trying to stay afloat until the hormonal college mixer going on inside of my body quiets down.  It is okay to have those moments of hormone-fueled tears, but I still have to ride the diabetes wave and get back to shore safely.

*****

Yesterday at work, many of us participated in certification testing to measure how well we understand the medical and legal aspects of our job.  It is about as un-fun as it sounds, but it has to be done.  We all filed into the office like nervous teenagers before the SATs, coffees freshly brewed and pencils newly-sharpened.  The test was divided into morning and afternoon sessions.  After finishing the first half of the test, we had an extended lunch break with a heavy emphasis on coffee-refueling at the local shop.

My first word upon leaving the test-taking haze was not “coffee,” though.  Instead, it was “LANTUS.”  I went to the bathroom, jabbed the needle into my backside, and felt immediate relief as I watched the life-sustaining insulin leave the pen and enter my body.  Must. have. insulin.

“Work Mom” texted me about getting coffee, but I neglected to respond due to the Lantus shooting up session.  (The Millennials crowd truly cherishes our connections with “Work Moms,” those kind souls who keep a watchful eye on the young professionals in the office.)  My Work Mom later found me in the coffee shop, where she knew I would be all along.

“Do you want to get out of here and go for a walk or something?” I asked.

And so we strolled through Providence until we found the perfect resting place: Adirondack chairs in the middle of a local college campus.  We parked ourselves there and chatted about anything and everything, never pausing while I checked my blood sugar or injected Humalog into my abdomen.  Work Mom’s empathetic presence in the Adirondack chair indicated that she understood what I needed to do and that diabetes did not have to interrupt anything in that immediate moment.  Amen. 

Here’s where I’ll sound like Nicholas Sparks in a corny, yet heartfelt, manner: How often do we get to pause and enjoy those little moments, removed from the hullabaloo of the world around us?  As college kids bustled by our Adirondack chairs on their way to the dorms, we simply soaked up the sunshine and the good company of one another.

I am not happy that diabetes has run my patience rather thin during this time of the month. But I am thankful that this time around, I do not have guilt about how I have handled the highs and the lows.  It does not mean that I have failed if I feel like crap sometimes.  I am trying my best.  Right now that means being present in the moment, sipping on coffee in the Adirondack chairs.

Thanks for the perspective, Work Mom.

One Step Back, Many Steps In

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.

The Existential Crisis of Grumpysaurus Dex

There’s a prehistoric beast on the loose who goes by the name of Grumpysaurus  Dex(com). (“Grumpy Dex” for short). You don’t believe me? Take a look at this footprint that I found on my keyboard!

Grumpysaurus Dex

Grumpy Dex spends much of her time dodging meteor showers (translation: ketone build-up) while looking for low-carb snacks to chomp on. Sometimes Grumpy Dex is grumpy or sad for reasons she cannot quite wrap her non-paleontologist brain around, but the mountains and valleys of the CGM graph confirm that she does not physically feel well in these moments.  Regardless of the cause, she carries a lot of guilt in her tiny T-Rex-like arms.

Grumpy Dex gets a raspy voice after playing Whose Roar Is Louder, Anyway?  Her thick dinosaur skin is unable to be pierced by even the 8mm BD insulin pen tips.

I have spent some time trying to catch Grumpysaurus in a net, to tie her down in one place and ask what is wrong. Following the trail of footprints got me closer to the source: Diet Cokes here, coffee cups there. A trail of peanuts led me to her lair.

Once inside, I turned and faced the mirror.  What I was looking for was right in front of me. Grumpysaurus Dex was, in fact, me — me tangled up in a Jurassic Park of diabetes lingo within my own mind.

*****

During DBlog Week when I read this post from Scott, I admired how brave he was for sharing such intimate feelings. I owe you all that same level of truth right now.  The phrase “It’s not you, it’s me,” has been muttered in many of my romantic break ups from the past. Yet when I write it today, for the first time I can say it with conviction and mean it. My mood is not due to anything said or done by members of the #doc. These are simply growing pains while reconciling my place in the world in light of the past, present, and future.

At the beginning of May, my doctors and I were pumped up. We had finally turned the diabetes corner! There was a noticeable difference in the pep in my step and the smile on my face. My friends commented on how relaxed I seemed. I got a glimpse of what it was like to feel good again, and I was hooked.

After twenty-four years of type one diabetes, I have built up a wall regarding emotion. I can’t be too happy because things may come crashing down at any moment. But this time, I did show my emotion. I emailed my doctor excitedly with picture-perfect CGM charts. I indulged in carb-filled snacks. I did not feel the lethargy- both mental and physical- that prolonged hyperglycemia evokes.  Instead, I allowed the thought “I am happy this weekend” to cross through my mind as I watched the sailboats in Newport, RI, harbor while sipping on beer with my friends.

And then, just like that, diabetes broke my heart- in a matter-of-fact, rather than melodramatic, sense. The good blood sugar rug got pulled out from under me, and my heart got bruised in the fall. How can you take this away?! My family and friends were happy. I was happy. Nothing hurt. And now it all hurts! My pancreas, my pancreas, why have you forsaken me?

My anger came out in self-bullying tweets, many of which fell victim to the “tweet and delete” method.  Still, they existed at one point in time, and, therefore, I need to take responsibility in good conscience.  Popular themes included: “You’re [Grumpysaurus] not good enough today.” Or there was the mask of cocky tweets: “My GPA is rockin’, so it makes up for my mediocre blood sugars.”

“My best friends have gone to combat. I’m afraid of carbohydrates. Grow up.” That’s not a fair comparison to make, first off. My friends are certainly heroes. But my fight is just different than theirs was.

There is a level of deep-seated pain there that is beyond diabetes and the #doc, and I am sorry that any of you have to witness that battle with myself via social media. I am working on this. I want to be better than that person, and I have to work through those emotions instead of  further cementing the bricks in the wall.

My biggest fear is that if something “bad” [insert scary diabetes story] happens, outsiders will think that I did not try enough. The truth, though, is that maybe I have tried so much that it is somehow too much.  In the process of surviving, I have forgotten what it means to live.

I have feverishly read thousands of diabetes-related documents and articles. I have tried to intellectually get ahead of a disease that quite often has a mind of its own. I have drowned myself in a sea of information overload. When you are already overwhelmed, does perusing the press releases for every new iota of diabetes technology really matter in the immediate moment?

Secretly, all I really wanted was for someone- anyone who understood- to hold me close and tell me that it would somehow be okay, to allow myself to emote freely via waterworks of tears. Even if that imaginary person has to lie to me, even if we both know that it may not be okay, perhaps even Grumpysaurus Dex needs to shed the thick skin from time to time.

What if what I can do is enough- tiny blogosphere roar and all? Compartmentalizing all sorts of scientific data in my brain may not be my greatest asset to myself, nor to the diabetic community right now. Perhaps the goodness that I can give back to the world as a type one diabetic is simply by telling my story honestly and with no edited outtakes on the levels of pain and frustration that I sometimes feel.  Maybe someone else hears that little roar and nods along with it? 

Perhaps God wants me to instead follow my heart, even if it seems like my dreams are small compared to others’ work, even if it seems like some days I am floundering no matter how many pre-boluses I take?  Establishing a figurative “little lemonade stand” scholarship fund to sponsor mental health treatment for a diabetic may play a small role in changing the course of someone else’s life for the better.  Over the next year or so, maybe that is enough; that idea could be my puzzle piece fitting into the context of diabetes a bit more smoothly than it has been. For various reasons, I may or may not achieve a target A1C, but that does not mean that I should be a lost cause.

Why not start that scholarship fund after I graduate from school, instead of pushing it off for a few more years?  Doesn’t that do more justice towards strengthening the faith that I have kept since I was a very little girl- just shy of three-years-old, walking out of the hospital to tackle the world, and diabetes, too?

The interim solution, I think, is to take a step back and do some soul-searching.  Allowing myself to truly feel my growing pains, rather than live-tweeting them, just seems like the right thing to do.  The #doc is a great community, and I want to offer it positive value in return for all of the goodness it fosters. Complex diabetes information overload has a time and a place.  In this immediate moment, I want simplicity. Frankly, I want a real cure. And a guilt-free cupcake. And that epic cure party on a Bahamian island with all of you and an open bar filled with sugary beverages.

I will continue to blog and tweet- just not as frequently for the next couple of weeks.  Perhaps I will scroll past the live updates on the latest diabetes technology and instead read about trashy reality TV shows.  Don’t get me wrong; anything that improves life with diabetes is a win for all of us.  But right now, Grumpysaurus Dex will leave the worrying about the scientific facts and the technological funding to the Pterodactyls and the Triceratops of the diabetes world.

I love you guys.  I always will.  Don’t mind me while I shed the Grumpysaurus skin, okay?

XOXO,

Ally Saurus

Greater Love Has No One Than This

Greater love has no one than this: to lay down one’s life for one’s friends.           John 15:13

Every day that we wake up as free individuals is because a Veteran/Service Member sacrificed for that freedom.  Some make the ultimate sacrifice.  Please pray for and reflect on them during Memorial Day, and every day.

Favorites and Forgiving Diabetes

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!

If Diabetes Were A Cinnamon Cure

 

I’m a big fan of Katy’s wit and attitude in Bigfoot Child Have Diabetes, so I wanted to stay true to her suggestion for today’s food-related theme for DBlog Week.  Alas, I am embarrassed to say that I am on the “grad school diet,” a fad that I do not endorse for full health benefits.  It amounts to guzzling coffee at all hours of the day, eating handfuls of peanuts in the car while driving to and from work/school, and scarfing down frozen dinners at 10:00 pm.  Ahh!!

Therefore, I’m playing the Diabetes Personified wild card today, but I’ll keep it food-related! 

One more disclaimer: As a former college English major, I must admit that my take on this exercise does not 100% meet the definition of personification.  Cinnamon “cures” are not people, but they do affect people’s attitudes.  So, please play along with the diabetes-cinnamon analogy here.  Mostly, I just really freakin’ wanted to write this!

If diabetes were to take the form of a cinnamon “cure” concoction that actually worked in a non-spammer world, would I pour it in my coffee and watch the Dexcom CGM line even out with each sip?

Would it fade that scar on my right lower back?  The one where the needle didn’t quite stick in all the way- so the nurse had to fiddle around with it until she could secure it with medical tape?  When she quietly asked if she was hurting me as I fidgeted under her grasp, would I still mutter “It only hurts a little bit” through clenched teeth?  Would my doctor still look on and pretend to believe me, mostly for the sake of my stubborn pride?

Would all of the needles and sleepless nights get swept away in a sea of cinnamon?

Would we inhale it like Afrezza, or tell Uncle Brad to “Pass the cinnamon, please” at Thanksgiving dinner?

Would we keep calm and bolus on?  Or would we keep calm and cinnamon?

If diabetes were a cinnamon cure, would insurance still want Prior Approval?  Would we be limited to one dab of cinnamon per month instead of the five that we might require to live healthy lives?  Would paperwork swallow us whole?

Would some people not have access to cinnamon?  Would we advocate long and hard for them?

What would the spammers say when the cinnamon cure suddenly worked for diabetes as advertised, its years of falsehood erased by a magic wand in the sky?  Would the spammers tap the Staples “That was easy!” button in unison?  Would they move on to the next groups- the cancer and the cystic fibrosis heroes?  Would they diminish the battles that these human beings face each day by promoting a “cure” so ludicrous that society rationalizes its way out of the burden of easing their pain?

“It’s your fault. You didn’t eat the cinnamon.”  And just like that the moral compass gets readjusted!

Would Wilford Brimley still say diabeetus?  Would he order a very light, extra cinnamon coffee at the drive-thru before breaking out in a dance?  Because of course he still has two functioning legs. He didn’t lose them like your grandma’s best friend’s tabby cat’s brother’s cousin did because he “failed” to “control” an autoimmune disease that doesn’t like to follow orders.  He was cured by cinnamon.  You heard it here first!

Would the #doc become the #coc- the Cinnamon Online Community?  Would we have weekly #CSMA chats?  Cinnamon Social Media Advocacy, it’s what all the cured kids are doing!

What happens to a cinnamon cure deferred?  Does its powdery dust make an audible “poof” as it dissipates?

#IWishPeopleKnewThatCinnamon is silly, mon! (Said in best Jamaican accent)

Cinnamon pleases the taste buds, not the islet cells.  If diabetes were as simple as a cinnamon cure, we wouldn’t enjoy all of the hidden blessings that we have grown to love through the complexity of managing this disease as best we can. It’s just not the same having a Kerri / Cinnamon, a Cinnamon Unconference, a @CinnamonCherise, a #dayofcinnamon Symplur hash tag, or a Cinnamon Hands Foundation- to name a few.  The real life diabetes versions of these people, organizations, and events bring far more goodness to the world than cinnamon ever will. Perhaps our virtual paths would not have crossed if silly cinnamon cures actually worked.  #Coc just doesn’t have the same ring to it as #doc, unless your mind is in the gutter!

Occasionally I sprinkle cinnamon in my coffee mug.  Then I check myself in the mirror.  It doesn’t hurt anymore, but the scar is still there on my back, a reminder of a disease that cannot be remedied by simple measures like cinnamon, a visible testament to the care I receive from others despite the pain, part of what gives us perspective and gratitude for the good days.

The needles are still required.  There will be more tears, more laughter, and more perspective gained along the way.  A sprinkle of cinnamon cannot make up for the other ingredients which have shaped our lives.  Wacky cinnamon cure theories do not do justice to the crosses we have carried.

There are no Nutrition Facts on the packaging that is life with diabetes along for the ride- not the other way around.  When we come together as a community, things are sweet enough to enjoy this #doc life for what it is without the artificial flavoring of ridiculous cure remedies.

For now, I’ll take one large coffee.  Very light, no sugar.  Hold the cinnamon, please.