diabetes

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.

“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.

gpa

“Shots, Shots, Shots, Shots! Everyyyybodyyy!!”

(Thank me later for getting that LMFAO classic stuck in your head.)

May 6 will mark six months since my return to multiple daily injections (MDI), or, as I like to say, “shots.”  Let’s call it like it is, people.  It’s sticking a needle in your arm, butt, back, stomach, leg many times per day to deliver life-sustaining medication.  It is not a cure, but it gives us life each day.

At a recent doctor’s appointment I proclaimed, “This rollercoaster isn’t working.  I need to return to the pump!”

To which my doctor countered, “And you told me the same thing about the pump before you went back on shots, Ally!”

I responded with a stunned face that only a googley-eyed emoticon can convey.  My doctor was right.  Diabetes is not as simple as insulin pump versus shots versus Afrezza versus whatever floats your boat.

If I have learned anything in the past six months, it is just how different everyone’s diabetes is and just how different our treatment methods may be- whether out of personal choice or simply out of necessity.  I’ll give another plug for Spare a Rose here: Most of us in the #doc are blessed to have any access to insulin, never mind the added bonus of having some flexibility in treatment options.

With that said, I know I seem like a broken record about the insulin pump.  I want to set things straight here once and for all, while providing an update about my shots journey for those who may be interested.

Insulin pumps, when functioning optimally, are amazing devices.  Going on the pump in high school opened up a whole new world to me.  My parents breathed a sigh of relief that I could enjoy being a dorky kid with a bit more freedom back then.  There are things that I miss immensely about insulin pumping: fine-tuning insulin doses, temporary basals, basal adjustments in one minute flat, carb-count/correction factor/insulin on board “wizards,” stability in blood sugar values on the good days.

If the pump works for you without many issues, all the more power to you. I want you to use whatever makes you feel healthy and happy- the same goals that I want for myself. In my rare case, going on shots had to serve that immediate interest in order to save my health. Do what works for you.

You can achieve a healthy lifestyle on shots, but it is more of a clunky, awkward sort of dance.  Once that Lantus is injected, it’s there for the day.  On Friday, my pancreas decided to rev up a notch (sarcasm), and for some odd reason I could not get my blood sugar to rise all day despite having taken the same dose of Lantus that I take every single day and hardly bolusing Humalog.  I force-fed myself almost all of the leftover Easter candy to no avail.  Good Lord did I miss the temp basal feature of the pump then! I longed for the personalized touches of modern technology that brick and mortar insulin injections simply do not afford.

I would ultimately like to ease into an “untethered” regimen of background Lantus in case of pump failures coupled with insulin pump usage again. However, this is quite complex, and we are not quite there with the shots yet. More details need to be worked out in terms of my basal and bolus plans. We are not settled into our comfort zone at this time, but we will get there.  For now, we are enjoying the fact that insulin is getting into my body without technological glitches causing ketones each day, a freedom that I will never take for granted again.

Many topnotch brainiac doctors have looked into my pump issues. We know that the product did not work for me personally. But we also know that a pump-centric solution has not yet been provided. Right now, we do not need to add another factor to the equation. We’ll give shots a shot (see what I did there?) for another few months, at least.

I find myself daydreaming about a cure so often now: the party on the tropical island with the entire #doc; the sugary drinks consumed without having to stop and bolus- whether that be via insulin pump or shots; the happy kind of tears.

As a child when that elusive diabetes cure was “ten years away” (cue inside diabetic joke laughter), my father used to tell us about the enormous cure party we would have. There would be a table in the middle of the front yard with a sledgehammer on it. We would smash my blood glucose meter, syringes, and other diabetes supplies into tiny pieces to signify victory over a vindictive disease.

The sentiment was well-intentioned, although today I must admit that I laugh a bit at that particular daydream. If I were cured tomorrow, all of those diabetes supplies would immediately be donated to people who needed them in the interim. The supplies have nobler uses than being crushed by a sledgehammer.

We should be thankful for the supplies that we have keeping us alive right now. If an insulin pump does its job for you, perfect. If Afrezza is your drug of choice, inhale away. If shots suit you better, go for it. However you choose to do so, just fight the good fight until there is a cure.

Please keep those cure daydreams alive by continuing to advocate so well. #weneedacure

Try.

Try.

Dictionary.com says

“to attempt to do or accomplish”

“to put to a severe test”

“subject to strain, as of endurance, patience, affliction”

“to attempt to open (a door, window, etc.) in order to find out whether it is locked: Try all the doors before leaving.”

Fear.

Dictionary.com says

“the feeling or condition of being afraid.”

I fear spiders.

I fear insulin- too much and too little and not finding that happy medium dose.

I fear carbohydrates- too many or too few.

My biggest fear, though, is misconception.

If something “bad” ever happens diabetes-wise, others might think that I didn’t try.

This is why,

despite the fears,

brush the spider off the car windshield.

Say a prayer and take the insulin.

Eat the carbohydrates.

Treat the lows and the highs.

Until there’s a cure, we must

“Try all the doors before leaving.”

Try. 

Short and Sweet

If you have wanted to get more involved with the diabetic online community (#doc) but are not quite sure how to do so, today is a good day to dive right in.  We don’t bite!

Use the hash tag #IWishPeopleKnewThatDiabetes (brought to us by Kelly @diabetesalish) to document what you want others to understand about diabetes.  Advocacy starts with the first tweet, Facebook post, blog writing session, and so forth.  And advocacy can happen anytime, not just today. We’d love to have you onboard!

Insulin Angels in Hotel Mini Fridges

Please note: I was asked as a member of the diabetic online community to provide feedback on Insulin Angel and I am happy to do so.  I did not receive compensation in any form for writing this blog post.

Let’s be honest, no one designed hotel mini fridges with the intention of storing insulin at safe temperatures.  I was always under the impression that the original hotel mini fridge engineer wanted just enough tilt when opening the door to rustle a few alcoholic beverages and drive up your bill.

When most people open a hotel mini fridge, their objective is to quench their thirst.  My main concern, however, is just how cold the beverages in the fridge may be- because if the beverages are borderline frozen, well, so is my insulin.  You’ve all heard enough of my griping about ketones to last you a lifetime, so I’ll spare you the story this time around.

Bottom line: We all know that we need insulin to survive.  Insulin that is too hot or too cold compromises the efficacy of the medication, and, therefore, endangers our health.  Forgetting that insulin in the fridge when going out for the day is not highly recommended, either.

Mike Hoskins of Diabetes Mine provided a detailed take on Insulin Angel, a product which will alert users to unsafe insulin temperatures and inadvertent moments of forgetting to carry insulin by utilizing that handy dandy thing called modern day technology.

While I have not personally used the Insulin Angel product yet, I feel comfortable stating why I think this concept has potential:

1. Insulin Angel’s marketing strategy catches my attention because they are reaching out directly to those who their product will help: the diabetic community.  Through crowdfunding, diabetics will drive this idea.  Insulin Angel understands their consumers because they understand life with diabetes.

2. Have I mentioned how I just want a nice cold iced tea from the hotel mini fridge without thinking twice about insulin temperature yet?!

3. Fun activities like going to the beach in the summer should stay carefree.  Let Insulin Angel do the worrying about insulin temperatures for you; you can correct any potential insulin temperature problem early on, rather than suffer the consequences later.

4. This product offers possibilities in a world that is not always diabetes-friendly. 

As an example, diabetes is often considered a medically-disabling condition of military service.  Although we have heard of people with diabetes who are able to remain in service in some capacity, one big reason why the military and diabetes don’t jive well is because of the need for insulin refrigeration; this proves technically-burdensome on deployments.

While I in no way, shape, or form am implying that Insulin Angel’s product will be helpful to allow diabetics to join or stay in the military (nor do I want to start a debate here), the main takeaway in raising the example is this: Previous/current limits on diabetics- whether self-imposed or societally-imposed- may one day be lessened due to this product.

Insulin Angel has the potential to give us another useful tool in our diabetes toolkits.  It eliminates one of the many “I wonder if I’m high because of ______?” factors in that we can cross “unreasonable insulin storage temperatures/forgetting my insulin at home” off that list.

Think of it what you will.  In the meantime, I’m ordering my #SaveHotelMiniFridges bumper sticker.

That Time I Asked the Cancer Version of the “Dumb Diabetes Question”

We’ve all rolled our eyes and stomped our feet at the ignorant diabetes phrases thrown at us over the years.

“You’re on the thin side.  How on earth do you have diabetes?”  Probably because my islet cells could care less about the size of my jeans.  Those aren’t the kind of “jeans” we need to focus on here.

These moments frustrate the heck out of me, but once I sarcastically detail the encounter on Twitter, I start to delve a bit deeper.  The people posing the questions do not live with diabetes each day.  Their fingers are not freckled from thousands of finger sticks.  The term “ketones” just sounds like a raspberry smoothie that Dr. Oz would recommend to get in shape.  “Scar Tissue” is nothing more than a Red Hot Chili Peppers song.

They’ve lived unscathed by diabetes, for the most part.  I can’t fault them for that.  Although I love all of you in the #doc and cherish the positive mark you’ve left on my life, at the same time, I wish that no one had diabetes.  I hope that those who do not have it gain a bit of perspective and inspiration by watching us carry the cross.  Sometimes that process takes time, though.

There is also a psychological element to the “dumb” questions.  They may not be so dumb, per se.  They are, rather, a defense mechanism.  Damn!  My friend suffers sometimes!  I want to control it and ease her pain.  She looks flustered.  I can’t just snap my fingers and make it better!  All of those thoughts roll through their minds while they watch me inject insulin or drop everything when the doctor calls.  Human beings, for the most part, want to help; diabetes is confusing when it comes to figuring out how. Fair enough.  I’m still learning, and heck, I’m the one experienced at living it.

The tables were turned on me recently.  I was in their shoes for a moment, and I asked the same silly questions because I didn’t know what else to do.

Providence is a small city.  As much as I poke fun of it, that’s part of the reason why I love it so much.  We have a mini community downtown.  If I need a break from work gossip, I stroll over to the local coffee shop, where I quickly observe that every office has its own dramatic story.

I walk by the Italian badass barber each morning- tough on the outside but soft on the inside.  His Chihuahua’s unbridled love for him confirms this.  When badass barber nods at me, I feel cool in the “I’m a high school freshman but the senior soccer captain just waved to me” sort of way.

I consider the disabled and the homeless my friends. They have taught me more about human resilience through our interactions than any school book will ever do.

*Names have been changed to protect the privacy of those discussed here.

There is John- always smiling, always happy.  He lifts weights at the Y each morning.  The would-be-understandable-excuse of being in a wheelchair is the farthest thought from his mind.  His humble example inspires all of us who know him.

There is another John who is down on his luck but sharp as a tack intellectually.  The brain beneath the scraggly mop of hair is a curious, gifted one.

Agnes doesn’t yet know this, but she kept me in grad school when it was getting hard to stay afloat. She reminded me that education is a gift, no matter what the circumstances may be.

“I want you to know that I’m going to move eventually.  I won’t be sitting on this stoop much longer.  I hope you don’t think that I’m taking advantage when I ask you to buy my lunch.  I’m just… SO hungry.  But I’m going to get my GED.  And an apartment.  My health will improve and I can get a job. I take my lunch to the library and I study there every week.”

Finally, there is Deana. But that’s Sister Deana to you and I. She preaches the Gospel on the street corner, talks to the birds as they eat the crust from her sandwich, and blesses the passersby of Providence. Sister Deana hasn’t looked well recently. The cancer has spread, and I am more emotional about it than I like to show on the outside.

For years, Sister Deana has lifted my mood during my afternoon walks. She is blunt yet kind all in one, a humorous combination. “Got any blessings for me?” is translated to “Where’s my money?” Yet if I’m short on cash, she still has a few prayers to send my way.

She sleeps in the street after her chemo rounds while the young professionals are careful not to trip over her tired body.

“Is there some sort of help that the hospital can provide for you? It’s not good to be out here exposed to the cold and the germs right after chemo,” I explain, citing WebMD wannabe medical knowledge.

“I don’t want help. I want my independence,” she replies.

Me too, I acknowledge in my head, reflecting on all of the times that I have pushed helping hands away during my own health struggles.

Desperately hoping that she will somehow be okay, clinging to any sense of security that may still linger, I ask the dumb question:

“Well, the chemo must be making you feel better, right?”

Someone please slap me. Chemo and feeling good aren’t normally associated in the same sentence. I know this. But I am trying to control the situation, to convert my naïve wishes that my friend’s pain will somehow be eased into her reality. I don’t know the right thing to say, so I say the first thing that comes to mind. It is not the right thing, but it is something. And for a brief moment, I feel fabricated relief that perhaps my words were comforting.

How many times have my friends seen this scenario play out in front of them? They have watched me projectile vomit my lunch, the ketones too thick in my blood. They have witnessed the wrath in my verbal outbursts as I see spots from high blood sugars. They have felt helpless and useless as a vindictive disease beats its prey bloody. That prey is their friend. They want to make it better, but don’t know how.

Sometimes just being there is all we need to do.   

“Better?! Honey, I scream through the chemo!” she laughs.

But she doesn’t bite my head off, either. She doesn’t angrily snap at me about how I should have known better. She doesn’t roll her eyes or tell me how ignorant I am. Instead, she calmly explains how the chemo wipes out her energy, how she would rather be on the street where she is comfortable than alone in a scary hospital room. I nod my head as a wave of understanding consumes me.

She really doesn’t feel well because she doesn’t want a Snickers bar this time- just her signature can of Coke. I place it into her outstretched hands and leave her resting her head against the brick wall of the vacant building. The birds finish off the bread crumbs and fly away.

 

 

Please keep Sister Deana in your prayers.

 

Sticks and Stones and Words

Many thanks to Douglas @salguodmai for being a supportive member of the #doc during the initial stages of writing this. And have I mentioned that he runs more miles in one weekend than I probably have in my lifetime?!  Inspirational!  Also, here’s a big shout out to Scott @Scott_InTheD for his Quotes that stick blog post, the concept of which I am borrowing here (with a somber spin on it- you’ve been warned!) with his permission.

“Sticks and stones may break my bones, but words will never hurt me.”  Maybe on Opposite Day?

Diabetes scares the people who love us on occasion. In moments of weakness or misunderstanding, they may say things that hurt us, often unintentionally. This blog post has been batting around in my head for a few weeks now, and my inner English major keeps reminding me to let it out.

Words from others are only words. They do not have to define us, but they may explain things like the subliminal pain masked by epic Twitter rants or the irrational self-blame that we impose on ourselves when the CGM graphs look like Mount Everest.  It’s sometimes there in the background, that internal voice that says you’re not good enough. The truth is that you are doing your best despite a rather difficult job as a substitute pancreas. Choice of words perhaps clouds this idea.

To quote Jay-Z, “Allow me to reintroduce myself.” Or at least to explain where I’m coming from on the bad days.

*****

“You’re a straight-A student, but you still can’t get it through your head!”

You’re right. I should have bolused more and eaten fewer carbs. But guess what? I’m going to be diabetic for a long, long time, and there’s always tomorrow. I messed up at a disease where you can give 110% and still not see the results that you want to see. I could do without the lecture.

^ That’s what I should have said. In reality, I probably walked away, did my homework to maintain those A’s, and hid my tears. And for the record, I’m still a straight-A student in grad school, and I still can’t get it through my head. But I know now that trying counts for a whole lot.

 

“If you didn’t eat _____, your blood sugar wouldn’t be 400.”

Because everyone loves a blood sugar value of 400…

 

“It IS your fault!”

No, it’s really not. My diabetic relative was simply trying to maneuver through a social setting, forgot about this pain-in-the-ass illness for a few minutes, and didn’t bolus until after the meal. You try doing this job and see how you like it.

 

“If this was Survival of the Fittest, you’d be long-gone by now.”

At the time, I laughed with the rest of the group. We were naïve high schoolers and the joke was not as tasteless as it looks on paper now. But there is that element of survivor’s guilt that still lingers. What if I had been born in another place or another time? He’s right; I wouldn’t have survived. But am I not ‘fit’ to survive as one of the ‘fittest’ now?

The consolation is that it isn’t another time, nor another place. It is here and now. I’m here. You’re here. Right now. We have survived as type one diabetics. It’s not a question of Why? but a question of What are we going to do with this life? We’re all doing a decent job in my book.

 

“Tons of people use the insulin pump. You’re the only one who had the problem, so it must be you.”

Look, diabetes is a blame game in society. We all experience this to some degree. What hurts is when people you love, who you’ve explained this to a million times before, take the cop-out option here. It’s easy to shrug pump problems or whatever it may be off on the user, the person with diabetes. None of us should ever have to defend actions we take to preserve our health, however unconventional they may be.

What I really want to say to you is that we both love each other. I do not want to keep rehashing the difficult stuff. You should inherently respect the decisions that I make regarding my own health. I may never know exactly why my pump problems happened, but they did. And every doctor and nurse involved came to the same conclusion: the issue was not caused by me, but by the product. I don’t want to have to prove it to you over and over again.  I have moved forward, and I would like you to move along with me.

 

“I’ve learned a lot from watching you handle your degenerative disease.”

Who said it’s degenerative? Not me.

Sure, there’s the term “complications” which none of us like to hear. But the good news with diabetes is that it doesn’t always have to be “degenerative.” We have a lot of tools in our toolboxes at this stage of the game. These tools enable us to potentially live better than those with diabetes in the past may have lived.

Diabetes will never be a walk in the park, for me at least, but I refuse to go down without a fight. And I also know that if it does become “degenerative,” it is not my fault. It will hurt, yes, but it is not my fault. There are too many outside factors that affect diabetes to hold myself solely accountable. For starters, I’m snitching on faulty islet cells, stress, hormones, inaccurate carb counts, exercise, not enough exercise, and many more variables which are all guilty as charged. But heck, there’s nothing “degenerative” about a heart and soul that refuses to stop fighting the good fight- whether we are speaking about diabetes or any other challenge. Keep doing your thing, #doc.

 

“If I were managing someone else’s diabetes and could take insulin freely with no personal repercussions [hypos and hypers] experienced, I’d be a good diabetic.” -Me

“Are you aware of your language?” –My doctor

What? I didn’t swear, did I?

“Good diabetic” and “bad diabetic” don’t exist. There is the diabetic, or the person with diabetes, or whatever you choose to call yourself. There is the human being, who is more than diabetes. But let’s lose the self-destructive adjectives. There is only the doing-the-best-I-can-diabetic.

 

“Camping. Soccer in Montreal. St. Patrick’s Day Parade. There are so many things that I still want to do with you.”

My former college roommate said this genuinely and nonchalantly. We were planning future trips with friends and daydreaming of warm summer weather. What resonated with me was how much I wanted these things, too, and how far away they had seemed a few short months ago when it felt like diabetes had the upper hand. There are so many things that I still want to do with my friend, and with others, too. Thankfully, I’m going to be around to do them now, whether diabetes likes it or not.

 

“You’re not saying you can’t do something. You’re asking for help. We all do it. It’s life.” -My boss

Wait, I’m not weak if I ask for help? (Sarcasm)

Also, you are a really cool boss. (Not sarcasm. That was a significant learning moment for me.)

*****

My doctor and I are working on this thing that we call The Wall. Sometimes I let her remove a brick from the wall with a tiny chisel. Other times I try to deflect attention away to something of lesser pain value.  I email her when I take a big bolus, a number that would have frozen me in fear in the past.  A few bricks tumble down.  We cheer via email and smiley face emoticons.  Slowly but surely, our masonry skills are improving.

The Wall impacts how I feel about and handle my diabetes management at times. It’s a learning curve, and there are days when I am not proud of my behavior or my attitude. There are disheartened tweets which I later feel guilty about. Curse words may be said to people who I care deeply for. Feeling sick is no excuse, but sometimes feeling sick negatively affects my emotional inhibitions.

I joined the #doc with the promise of being transparent, so I’m confessing my stumbling blocks here and giving my written word that I want to work on this. I hope to one day sledgehammer the stumbling blocks- rather, the bricks- into smithereens.

If this post rings all-too-familiar to you, I want you to know that you can be a straight-A student and still not get it.  Please know that it is okay.  You are smart, not dumb.  You are a fighter, not a failure.

Maybe diabetes is not yet meant to be fully understood? Just show up every day and work on it. That’s all anyone should ever ask of you.