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Diabetes Campfire Stories

“Back in my day, we used pork-sourced insulin when I was diagnosed!” I may one day proclaim to my future grandchildren.

At this point in time, there will be a cure for diabetes and they will laugh off my fireside tales of the struggles of the past, oblivious to the hardships that generations before them have faced. Honestly, that’s how it should be if we aim to improve the world during our brief time here.

So many changes have occurred in diabetes treatments since my diagnosis just before my third birthday in the early 1990s. And I have not endured half of what rockstars like Supreme Court Justice Sonia Sotomayor have lived through regarding diabetes management processes! Change does not have to be a comparison battle, rather it should grant a clear perspective of just how blessed we are today despite a conniving autoimmune condition.

Almost one year ago I began using the Dexcom CGM (continuous glucose monitor) in the hopes of alleviating anxiety surrounding my diabetes. From the first day, I was absolutely floored by this product. Sure, it is technology and it is not the same as a properly-functioning pancreas. I have to carefully prep my insertion sites to avoid blistering rashes. And I am still waiting on my winning lottery ticket so that I can make my first purchase: a fulltime nurse who will check my blood sugar at night and will perform Dexcom insertions on me so that I do not have to do the one-handed pretzel move to get a sensor in my lower back.

Despite these minor issues, Dexcom is, in my humble opinion, the best quality product on the diabetes market. Due to many diabetes hurdles this year, I cannot boast of an A1C that drastically improved while on Dexcom, but I can say that my mental anguish regarding diabetes has lessened substantially thanks to Dexcom’s accurate readings. That, my friends, is half the battle. I still fear overnight lows, but I am much more confident that I will wake up thanks to Dexcom rattling and alarming from an empty coffee mug on my nightstand. I owe my life to Dexcom, as do many others. In the past, we all had to make do with what we had, and plenty of us survived prior to CGMs. But Dexcom is an added safeguard that makes life less complicated. It is the sort of change that is easy to embrace.

The Dexcom Facebook group was my true introduction to the diabetic online community. For the most part, this group is wonderfully supportive and non-judgmental- a place where we can all feel at home. We are able to share our scary moments and our triumphs with an audience who “gets it.” As I ventured off into the blogosphere, I fostered genuine friendships with others in the community, but I will always have Dexcom to thank for being the springboard to finding some of my largest supporters in fighting diabetes.

In grade school my mother used to drive to the auditorium to check my blood sugar every day at lunch. These were the infamous NPH and R days, and lunchtime was primetime for lows. My mother recalls seeing me file into the cafeteria with the rest of my class looking white as a ghost; she does not know how I had enough energy to even walk on some occasions when my blood sugar hovered in the 30s and 40s. There was no Dexcom back then to alert my teacher to the rapid decline.

On the playground in fourth grade, Michelle spoke the unfiltered truth. “I’m sorry that I didn’t invite you to my sleepover for my birthday. You could come if you weren’t diabetic, but my Mom doesn’t know how to take care of your diabetes so you can’t sleep over.”

In fairness to Michelle’s Mom, after twenty-four years of diabetes, I’m still trying to crack its code. I give her credit for recognizing that this disease is much more serious than an herbal cure remedy. Perhaps she could have coached her child on her delivery of the bad news a little more, but we can’t always have it all.

When I see the parents of children using Dexcom CGM post in the Facebook group about little Joey or Susie attending the first big sleepover of the school year, it never fails to bring tears to my eyes. Those kids put up with enough pokes and prods, fingersticks and pump site rotations, Dexcom insertions and limited cake consumption that they warrant having some fun with their friends every once in a while. They deserve to stay up all night eating popcorn and watching movies, forgetting that diabetes exists while Mom and Dad rest comfortably at home watching the steady line of the Nightscout Project’s Pebble watch display or the Dexcom Share apps.

Enjoy that good type of change. Remember the freedom that this product affords us, even on the days where the calibrations seem a bit off. After all, we are dealing with type one diabetes; diabetes’ “calibrations” to everyday life are rarely on the mark. Innovative products like Dexcom CGM allow us to live life in the moment, to have an additional security blanket onboard, to do things that diabetics in the past may not have been able to do.

To the parents of the kids going to the sleepovers where Dexcom gets the invite, too: Your kids will thank you for allowing them to just be kids one day when they are old enough to realize the sacrifices that you made for them. One day we will all sit with our respective families around the campfire and talk about that first sleepover as a diabetic, the first time fast-acting insulin was introduced, and so on, until we can finally talk about the first big meal after the cure.

Keep up the good work.

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“I never meant to make you cry, but tonight / I’m cleanin’ out my closet.” -Eminem

My apartment could easily get selected for a TLC special entitled Hoarders: The Diabetes Edition. I have mountains of old supplies stocked up just in case the apocalypse ever occurs and I for some reason need a 6-year-old infusion set for an insulin pump that I no longer utilize…  (Note: Proper medical guidance instructs never to use expired supplies.  I am in no way recommending that you do so.)

I have trouble discarding diabetes supplies because they represent my lifeline, even if they are expired.  The thought of running out of supplies freaks me out.  Temporary relief arrives when my mail order pharmacy prescriptions knock at my front door, providing life in predetermined 3-month packages per my insurance provider.  But what if I drop and shatter a vial of insulin accidentally?  I may need my fridge stockpile to get me through until my next order.  Most of us are privileged enough to obtain medication through various means, however much of a longwinded telephone loop-de-loop headache that process may render.  If we lived somewhere else or during some other time, we may not have been able to count these blessings.  My bedroom’s diabetes supply closet is a constant reminder of this privilege.

There are certain items that I can’t bring myself to throw out, but probably should.  I returned to multiple daily injections in December after going through the hardest time of my life- a period in which the only type of infusion set that would work with my body type just so happened to have a product defect in multiple lot numbers.  I spent a majority of my time on the couch chasing ketones and brainstorming with insulin pump company representatives and my medical providers as to how we could correct this problem.  I fought going back on shots tooth and nail, bitter that an infusion set component measuring only a few centimeters long could have such dire effects on my health when it was not functioning properly.

“My quality of life will be ruined on shots!” I exclaimed.

“Can you honestly tell me that you have much quality of life right now?  You’re on the couch with ketones every day fighting for your life,” my wise doctor replied.

And so I finally caved and returned to a Lantus and Humalog regimen.  It was rocky at first, but I am now enjoying my time (mostly) ketone-free.  The blood sugar management still has its ups and downs, an inherent trait of type one diabetes.  There are days when I miss the insulin pump’s fine-tuning aspects wholeheartedly.  I still glance down at my waist to check the time on my pump from time to time, only to discover that what was once such a major part of my life is not there any longer.

When I first transitioned off of the pump, my resentment was palpable. Screw you, pump! I’m moving on! This was a mental game in which I tried to convince myself that this was the right move.  A majority of modern day diabetics use pumps, and I felt crazy that this was not a viable option for me.  Yet time and time again, my infusion set changes proved that this was not working for me personally.

Subsequently, I grieved the pump’s loss under a mask of anger and sarcasm.  During some particularly emotional days, I still think it’s Halloween mask time.

Yet after this struggle, there remains a part of me that cannot bear to throw out the pump supplies.  They have defects, so I cannot donate them to charity for fear of putting someone else through ketone hell.  Instead, they crowd my coat closet by the front door, my bedroom closet from floor to ceiling, the space under my bed, and other spots below stacks of grad school books. I might need these supplies again one day, right? They are a lifeline to another time, another method of managing this jerk of a disease.

Perhaps I will try again.  Not yet.  But perhaps.  The pain is still too raw and we still have too much work to do on the shots before a new decision can be made.

I would be lying if I said that I am not still processing my frustration and disappointment in the entire faulty infusion set situation.  Heck, I’ve certainly blogged about it enough.  But I am more cognizant of the concept of forgiveness and enjoying the present moment now.  I saw firsthand how quickly health can change, what it feels like to watch yourself dwindle away into nothingness.  If it was not for determined doctors and nurses who believed me and did not give up, I may not still be here.  But I am here, so I need to make the most of this life.

Just in case I ever need the insulin pump collecting dust on a shelf, its infusion set and reservoir packages will decorate my room for now.  Whenever I move to a larger residence, I will box them up and put them in a storage closet, packed away neatly with the other memories of my life.  Out of sight, out of mind.

Honestly, though, whether insulin pump enthusiasts or shots supporters, we do not need bigger apartments with huge walk-in closets.

What we really need is a cure.

pump boxes

#NoFilter Coffee?

In my enthusiasm for the start of DBlog Week yesterday, I did not give a proper shout out to Karen Graffeo until the Comments section of my post.  I’d like to rectify that here.  This is my first DBlog Week, and I am absolutely loving the discovery of blogs that I did not know about beforehand, as well as hearing from my usual favorites.  How cool is this community?  Seriously.  It’s bursting with goodness this week.  I am sure that organizing DBlog Week involves tons of hard work on Karen’s part.  Not only that, but every time I go to comment on a post, I see that she has already left her words of wisdom behind!  What a great example of giving back to this powerful community.  Thank you, Karen!

Here’s my take on today’s theme, “Keep It To Yourself”:

Those of you who read my blog or follow me on Twitter already know that I wear my heart on my sleeve and I speak with #nofilter in the heat of the moment.  There are some things that I have been rather coy about, though.

When I first began blogging in September 2014, I vowed to be transparent, and I still uphold that promise.  Sometimes it makes me feel like I need to share everything, though.  Realistically, I can be honest and helpful in the diabetic online community without jeopardizing the privacy of those who have not necessarily signed up to be featured on a diabetes blog.

When I was in high school, I used to hide behind bathroom stall doors when taking insulin injections.  My classmates did not know that I was diabetic until the end of my freshman year. I built up my “diabetes coming out party” so much in my head that I turned it into a much bigger deal than it was in reality. Once I was cool with diabetes, everybody else was, too. For the sake of living my life with more ease and with more safeguards in place in case of an emergency, I eventually disclosed that I was diabetic. A weight was immediately lifted. No more hiding syringes in my coat pocket. No more making excuses about why I had to sit out for a few minutes at soccer practice while my blood sugar came up from a low. The rest is history. Now ya’ll can’t shut me up about diabetes, right?

We all come to terms with diabetes in our own unique ways. Some people may always choose to be private about diabetes. Others might spread the diabetes Gospel loud and proud. We are all individuals, and just because I am outspoken about my life with diabetes does not mean that it is the right path for someone else to follow.

  • I have a type one diabetic relative who I have alluded to at times.  For the sake of my relative’s privacy, I do not mention personally-identifiable details online.  While my relative is not necessarily shy about diabetes, I also do not feel that it is my place to tell my relative’s story. It is not my own story to tell. If/when my relative ever wants to get involved in the #doc, I will always support that choice. But ultimately that choice is up to my relative, not me.
  • I also hint at my employment duties at times, not necessarily because I have some big, fancy, secretive job, but more because in a selfish way the #doc for me represents a little cocoon in which I go to seek comfort and strength. If I mingle my professional life with the #doc, it loses that element of “everybody gets it here” that I have grown to love. This is not to say that diabetes and professional lives do not mix. Heck, there are plenty of #doc success stories to show that one’s passion can become a great job. This is just where I am here and now, and right now I need the unconditional support that I find in the #doc. No strings attached.
  • I have never named my personal doctors and nurses on my blog. They did not sign on the dotted line to become the heroes that I describe in my writing, so I do not give their identities away. They may be humble about what they do, for example. I try to respect those boundaries. This is not to say that I would not disclose that information in the right moments. If someone lived in my geographic area and thought that my personal doctor could help him/her, by all means I would ask my doctor’s permission to pass along contact information. The point is similar to what I noted above with my diabetic relative: I try my best to respect that perhaps others do not want the spotlight on them.
  • My tweets have also been vague regarding the topics of mental health and sexual/physical assault, also out of respect for friends near and dear to me who are some of the strongest people in the world. Just know that I support their advocacy causes wholeheartedly. Society is starting to turn the corner on stigma in these situations, but we still have a heck of a long way to go.

With the final point in mind, I invite you to foster a Coffee Convo with someone who may need it.

It is okay to have #nofilter. But sometimes we do not need to yell things from the rooftops to get the job done. We can respect others’ privacy and still show the world that we care. I kindly ask you and your coffee cup to do so.

I Can Because Someone Believed That I Could.

I was running late one day during junior year of high school and our Spanish teacher, Ms. K., questioned me in front of the class.

“Why were you late again, Ally?”

“Umm… we got out of Math late today.”

“Fair enough.  And who is your Math teacher?”

“Mrs. H.”

“Okay, I’ll chat with Mrs. H. later on today.”

Umm, what?!!  Well, there goes my great excuse!  Mrs. H. knows that we were not late today! 

As my classmates filed out into the hall at the conclusion of class, Ms. K. held me back, deciding to give me one more opportunity to come clean.

“Ally, why were you late?  For real.”

“I didn’t want to say it in front of the class, but I was having issues with my blood sugar,” I replied, staring at the floor.

“I’m so sorry.  I wasn’t thinking of that earlier.  Anytime you have to leave the classroom and do whatever you need to do- please just take care of yourself, okay?” Ms. K. responded, suddenly concerned.

“Okay.  I’m sorry again.”

When I tell that story to my coworkers, I usually tell it as a joke.  In my head I know full well that it is a rationalization: Hardy har har, see, diabetes comes in handy sometimes!

The truth of the matter is, being so far removed from that incident in high school, I’m not entirely sure what actually transpired when I look back now. My best guess is that diabetes became a convenient excuse when I saw that I was going to be disciplined; there was not a major diabetes emergency going on that made me late for class. In that case, I owe Ms. K. a coffee/beer with my apology the next time I see her.

At the same time, did diabetes sometimes make me late because I had to make an extra stop at my locker to check my blood sugar, or go to the bathroom when my blood sugar was too high, or scarf down a granola bar when I was low? Absolutely. The mature thing would have been to discuss this with my teachers beforehand so that they knew that I was trying my best. Alas, I was a dorky high school kid just trying to fit in.

You are in the driver’s seat of your life; diabetes is just the pesky younger sibling trying to hang out with the cool kids. Do not let diabetes be the excuse that gets you out of detention. If you mess up, take responsibility. But also recognize that diabetes does like to throw some wrenches into the mix of life, and you should be upfront with those who may need to understand. Tell your teacher or your boss if you are not feeling 110% one day and need to take a breather outside. I wish that I had fostered that discussion in hindsight.

In grad school I have been blessed with professors who have taken a keen interest in my academic development. I am open with them about diabetes because I am more comfortable in my own skin now compared to high school. On the particularly rough days with my insulin pump problems in the fall, my instructors showed me selfless compassion. They respected that no matter how sick I was, I was going to get my work done on time and do it well. (Something about stubborn Italian pride, right?) Yet on many occasions, they held me back after class- not to scold me for being late, but to make sure that I was okay. Every ounce of hard work that I put into my degree is a reflection of the confidence that my instructors hold in their students’ abilities.

I can.  You can.  We all can.

I can because academic instructors believed that I could- diabetes and all.  In the process, I started to believe, too.

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