diabetes

Healthcare loop-de-loop

This blog post serves as a simplified example of the complex headache that is the “healthcare loop-de-loop.” Ironically, I pledged to write about this topic last year as an offshoot of a blog about diabetes needles. Today, I again blog about diabetes needles, and how many hoops we must jump through to obtain minimal elements of surviving diabetes.

Many have it more difficult than me, their basic health needs unmet. Frankly, I have somewhat decent healthcare coverage through my employer, and I have also studied healthcare at the graduate level and understand its nuances. My point being: Despite all of this, healthcare remains an untamed beast, from the lower administrative levels all the way up. If I have it “good” and experience this, what about all of those slipping through the cracks merely due to circumstance?

The healthcare loop-de-loop reemerged last week when I went to refill an insulin pen tip prescription, which was promptly denied by my insurer. (I use two different types of insulin pen tips- the 4 mm BD tips for Lantus and the 8 mm tips for Humalog. My doctor and I found that the smaller Humalog volume was not being absorbed by my body with the 4 mm tips, so we begrudgingly opted for the larger 8 mm’s. Your diabetes may vary.)

Allow me to further explain, via Twitter rant:

^ Because of the confusion about the needle length sizes and what had previously been refilled/what needed to be refilled currently, insurance flagged the new prescription as something to deny. In reality, it was simply a new prescription for a different needle length, granted by my doctor to alleviate some pain from multiple daily injections.

^ I cannot make lengthy phone calls at my job because my job duties would be compromised. And I need to work for reasons of insurance and paying healthcare bills. Many of us are in the same boat here.

^^ “This probably should’ve been a blog.” …Yup, now it is.

^ As maddening as this phone call marathon was, Spare a Rose puts it all in perspective. Although our healthcare situation is far from ideal in the United States, we are blessed to have what coverage we do have.

At first I felt dramatic for live-tweeting my everyday diabetes grievances. Later, I was pleasantly surprised by how many people validated my feelings, unfortunately having experienced similar irritations of their own.

The resounding theme was: This isn’t right. Whatsoever. Amen.

Healthcare is a complicated, multidimensional goliath. I just so happen to love learning about it. But when healthcare bites back at me, it is a reminder that I am still a little coffee cup in a big sea of healthcare coffee beans. Socioeconomic status, insurance coverage, and corporate power are just a few of those beans playing in the healthcare game. The stakes are high: Quality of health, and, therefore, quality of life, are on the table.

I recognize that my tiny roar may not jostle healthcare mountains. Currently, there is too much bureaucracy and red tape to allow many of my suggestions to move forward. But in order to do my part rather than sit back and complain behind the shield of my laptop screen, I must recommend some changes. If they are heard outside of the confines of my own mind, then it is worth expressing them.

I will start small, with the insulin pen tip example:

“Hi, my name is Ally. I have been type one diabetic for 25 years. One day I am confident that there will be a diabetes cure. We always keep that faith alive.

However, that cure is realistically still far away. In the meantime, I will require insulin every day in order to survive. This insulin should be affordable and accessible. Anything less is morally reprehensible. The same logic goes for any other life-sustaining medication for any other serious illness. We can and we must do better.

If a type 1 diabetic is not using an insulin pump, he or she requires insulin syringes or insulin pens (glorified insulin syringes for ease of user experience). Insulin will be delivered into the body through a needle at the end of the syringe or insulin pen.

Because I require insulin to live, and because I use injections rather than an insulin pump to manage my blood sugar, my skin must be pierced by needles every day until I am cured. Insurance could make this more bearable by not causing obviously-necessary prescription refills to be a royal pain in the @$$.

The Endo clinic could edit their coding system, so that pen tips can be ordered by millimeters, rather than gauge. No one likes to say, “Can I refill this 0.99784567325 X 54321 infinity pen tip needle, please?” Just say 4 mm in your system. Thumbs up emoji.

Kindhearted pharmacist who empathized with my worries over the insurance-endocrinology clinic ping pong battle deserves a coffee on my dime. So does insurance representative who patiently worked through the mix-up in order to get my supplies.

Understandably, BD does not want to market their insulin pen tips as “8 mm LARGE, will leave giant bruises; 5 mm semi-large, still may bruise; or 4 mm, smaller but you’re still jabbing yourself with a needle!!”. However, calling the pen tips “Short (8 mm), Mini (5 mm), and Nano (4 mm)” all indicate “small” in the minds of patients, providers, insurers, and pharmacists. You can see the root of the miscommunication.

Below is a color-coded chart, created by yours truly, for future reference. Feel free to disseminate to all parties involved here. It will lessen monthly Advil bills.

BLUE = 8 mm “Long needle. Only intended for use by badasses.” Lamely called “Short” in real life.

PURPLE = 5 mm “Medium-length needle. Sassy.” Lamely called “Mini” in real life.

GREEN = 4 mm “Small. Dainty needle for dainty pain.” Lamely called “Nano” in real life.

ALLY = happy that you listened

Thanks for hearing me out. Until the next prescription refill…

XOXO,

Ally”

Name Game

My diabetes-related Facebook account has been deactivated for awhile now. It all started with Facebook asking me for government-issued ID to ensure that Ally VeryLight NoSugar was my legal name.

Well, no surprise here: It’s not.

But does that make the name any less meaningful?

After multiple back-and-forth emails explaining myself and my name to Facebook, they bureaucratically decided that my personal account should become a fan page. Too bad I already had a fan page here, and now my personal account was exiled by Facebook.

When I established my blog and its related Facebook account, I was slowly and painfully succumbing to a lackluster amount of insulin being delivered into my body due to defective insulin pump products. (All is well now thanks to some creative problem-solving.)

I went online to search for technical answers, and I ended up finding so much more than I ever could have imagined: peer support, courage to return to multiple daily injections and to feel better, a purpose in advocacy. But when I created Very Light, No Sugar, I had legitimate concerns about employment discrimination due to my health status. I feared that no current or future employers would want a woman with a defective insulin pump representing their offices.

So, I wrote under my nickname, Ally, and did not think much of it until the Facebook fiasco. Allison was sidelined to the couch, fighting ketones and trying to solve biomedical infusion set engineering defects on her own. Ally was the empowered diabetes advocate, enjoying the companionship of a newfound online community and writing for a greater cause. Although I am both of these entities in one authentic being, at the time I preferred the life Ally was living, the act of using my own suffering to invoke goodness somehow.

My issue with Facebook is the discriminatory nature of its names policy. I am not the first ePatient advocate, and I imagine I will not be the last, to be singled out by Facebook. While Facebook has every right to enforce a strict names policy, the problem is that they do not do so universally. My friend can have an account for his Chihuahua, Scruffy the Dog, yet ePatients advancing charitable causes are somehow pinpointed as “sketchy” by Facebook. Far from it; ePatients are some of the bravest and most selfless people on earth.

Safety is also an issue on Facebook. When my friend uprooted her life to escape domestic violence, she wanted to keep in touch with loved ones without her abuser knowing her whereabouts. Logically, she used a Facebook pseudonym to maintain communication with us from afar.

Additionally of note, I was uncomfortable uploading my government identification material to Facebook’s site for verification. My personal information was compromised in an HR data breach at my office last year, and those feelings of violation and “what ifs” are still raw today. I did not feel the need to further justify my name to Facebook, so I chose to take a break from it.

No matter the reason, if Facebook truly cares about community as they claim, these circumstances should be incorporated into their names policy in a supportive, understanding manner.

Although my blog does not make the world go ’round, I do believe that a good name helps a good cause. Just as I remembered the website sixuntilme.com for its creative brand and background long before I became a blogger myself, my hope was that Very Light, No Sugar would stick in the minds of a few people who needed to hear my story. If the name allowed me to give back to the diabetes world in my own small way, then it carried a reputation I could be proud of.

Despite all of this, the break from Facebook has mostly been refreshing. Although I want to keep up with the diabetes community, my Facebook newsfeed had been overwhelmed with scary diabetes stories, quarrels despite all of us being in this fight together, and surely my own “endearing” moments of annoyingness. Frankly, I needed to detox from triggers contributing to diabetes burnout.

I missed little things like easily messaging my friends to catch up, specific advocacy groups, or discovering links to new, enjoyable blog posts. And, hey- it’s Facebook. Like it or not, (almost) everybody’s using it.

Out of principle, I am back under a slightly different ePatient pseudonym. I believe that ePatients should be given the due respect that others receive. This is my symbolic way of standing up to a social media behemoth.

My name is Allison. I also go by my nickname, Ally. I have type 1 diabetes. I like coffee. A lot.

Call me whatever you want (within reason), but I will never stop fighting for a diabetes cure.

What more could Facebook need to know, anyway?

Spare.

Spare.

Dictionary.com defines the verb as “to give or lend, as from a supply, especially without inconvenience or loss.”

At that rate, why wouldn’t we spare roses this February, and perhaps all year long?

The premise is simple: click here, donate $5- the cost of a rose you may normally give to a loved one on Valentine’s Day (or, set up additional monthly donations if you can!), and save a child by providing life-sustaining insulin through your donation.

If you are reading this blog post from a cell phone or a computer screen, chances are you have $5.00 to spare. If you do not, that is okay, too; instead, please help to spread the word about #sparearose.

What is $5.00 worth?

-one medium coffee and one donut from your local coffee shop

-half of a movie ticket (What use is that?!)

-crappy red wine and a headache you don’t need, anyway

-an overpriced bottle of water at a sporting event

*****-And oh, yeah, A LIFE!!!!!!!!

Close your eyes and think of a time when you did not receive a viable amount of insulin for a few hours. We have all been there: a kinked insulin pump cannula, diabetic ketoacidosis (DKA) during diagnosis or severe illness, or whatever the case may have been. We have felt the heartburn and nausea of high ketones, the unquenchable thirst, and the longing for comfort that takes too long to get there.

For most of us, those days represent acute instances of distress. Scary, yes. Life-threatening, sometimes. But if we are reading this blog post today, we somehow escaped diabetes’ wrath and are feeling better thanks to the insulin taking up all of the shelf space in our refrigerators.

Without insulin, kids in developing countries know that type of suffering intimately. Those of us who are more fortunate cannot lay our heads on our pillows at night and be okay with that. We understand diabetic ketoacidosis. We have a moral obligation to curtail DKA as best we can before it senselessly takes any more lives.

If my words come off too harsh here- well, it is a risk I am willing to take. If our moral obligation leaves us momentarily uncomfortable in our realization of its truth, so be it. These kids are more than uncomfortable as they await insulin that they should have to begin with. We owe it to them to do the right thing.

If you can, please spare a rose this February. Through the simple act of sparing, we can dry so many tears.

Thank you

Chocolate and Nightmare Visit Boston

I recently had the honor of accompanying my Stanford Medicine X (#MedX) bestie, Danielle Edges, and her young daughter, Alex, on their visit to Children’s Hospital Boston for a heart catheter procedure. Alex has a congenital heart disease called heterotaxy, additionally complicated by liver and spine issues. Danielle’s honest perspective on her family’s life with CHD can be found on her blog, Life is hard. Wear a Helmet. Adventures in Life. With Danielle’s permission, I am sharing my take on her family’s bravery here.

I joined the Edges at their hotel room because Alex’s heart cath had been postponed a few hours. Danielle and Alex had endured many tiring hours of travel across the country two days earlier. The good news about the delay in the procedure was that I got to hang out with them for a few hours away from the beeping of hospital machines and the drowsiness of anesthesia. The bad news was that Alex could not eat before the heart cath, so adding an extra few hours to that timeline was understandably not ideal.

MedX and MedX’er-in-training selfie.

Alex’s lively spirit was contagious despite being hungry, however. Danielle and I are both known to say what we mean as healthcare advocates, which is probably why we click so well. I saw Danielle’s energy and wit in Alex, who is well-versed in medical lingo after many hospital stays in the past. (We totally have a future MedX’er-in-training!)

We tried to distract from the hunger pangs by coloring birds in a coloring book, or playing with Alex’s new stuffed puppy toy that the Fairy MedX Godmother, Ally, brought along for the hospital stay.

“I love my present.” -Alex. (Complete with Chocolate, the puppy, picture).

“What is that? I want one!” Alex proclaimed, pointing to my Dexcom receiver.

We discussed how we were similar in some ways, as Alex has a medical device connected to her as well- a G-tube to help her get the proper amount of nutrients each day. Her blood sugar can also dip low due to her liver condition, and who doesn’t like a communal grumble about hypoglycemia?!

Soon it was time to head over to the hospital. The air was frigidly cold on our short walk there. This was my first time stepping foot in Children’s despite decades of treatment nearby at the Joslin Diabetes Center and having family and friends who have received lifesaving care at BCH. Simply walking through the main entryway is a moving experience; there are families from all over the world, children with conditions both very visible and very invisible, all there to seek topnotch medical care at the best children’s hospital.

We were taken to a hospital bed for the preparations prior to the heart cath. A kind nurse gently informed Alex that she would need IV fluids. The nurse spoke directly with Alex, not at her. Alex was treated like the informed member of the healthcare team that she is, even at only eight years old.

Another nurse came in and the IV insertion was done before we even blinked. Kids tell it like it is, especially complex-medical kids whose perspectives are better than most. So, Alex looked right at the nurse and said “Ow,” and then immediately went back to watching TV stoically while Danielle and I chatted.

The nurses were so impressed with her courage that they rewarded Alex with a dark brown and black beanie baby puppy to complement Chocolate, the larger brown and white puppy.

“What is the new puppy’s name?” the nurse asked.

Alex had just been poked with a large needle. She was ravenous and about to undergo a difficult medical procedure.

“Nightmare,” she aptly replied.

From the mouths of babes, as they say. I will never forget the humor and irony in that moment for as long as I live.

Rocking out with Chocolate and Nightmare.

Shortly thereafter, a nurse anesthetist administered medication to prep Alex for the heart cath, and it was time for her to be wheeled into the surgical room. As Alex dozed off, Danielle whispered that she loved her, and Alex whispered back, “I love you, too.”

In these moments, Danielle had to be strong not only for herself, but for her medically-complex child, as well as her daughter and husband back home. She is truly SuperMom, as evidenced by the poise she and Alex exhibited throughout the long day at the heart center.

I, on the other hand, do not always handle hospitals so well. We had not eaten much over the course of the busy day, and suddenly everything hit me all at once. The doctors came to the waiting room to speak to Danielle while Alex was in recovery. Danielle can explain the details far better than I can; please see her blog post here. In layman’s terms, there was good news peppered with difficult news.

We then proceeded back to Alex’s room. A nurse was with us as Alex slowly roused from the heavy sedation. This same nurse called Danielle with updates every hour while Alex’s heart cath went on, proving once again why Children’s Hospital gets every detail right. As I watched this little girl arising from such a long fight, my head suddenly started to spin. The room was hot, and my Dexcom indicated a fairly fast blood sugar drop.

I alerted Danielle and the nurse, who brought me some water and this adorable tiny carton of orange juice just in case I needed it.

OJ for the diabetes win.

Half of a granola bar consumed later, and I had recovered just as quickly as the dizzy spell had appeared.

“Diabetes is so… constant,” Danielle remarked afterwards.

“Yes, but so is all of this,” I replied, glancing around at the machines in Alex’s room.

Our respective diseases can act up in the exact moments when we wish they would behave; but the understanding and support that we have gained through our friendships at MedX and through ePatient communities have made those moments less scary. That much was articulated by those two sentences exchanged between myself and Danielle, an unspoken understanding and respect bridging the gap between health conditions.

As the evening progressed and Alex was moved to a new room for overnight observation, it was time for me to head back to Rhode Island. Danielle’s night was just beginning, though. There would be more IVs, chest xrays, and medications to be delivered, and this Mom would be by her daughter’s side through it all. We hugged and parted ways, knowing that we would see each other soon.

*****

To simply state that the Edges family is inspiring does not do justice to their story. I can best describe their strength by detailing a tiny moment in the grand scheme of the heart catheter day.

While we waited for Alex to be called in for the procedure, Danielle and I conversed in our signature animated dialogue, talking about hopes and dreams for healthcare, how much we missed our MedX friends and could not wait to be reunited, and more. Alex was quiet and focused on the cartoons playing in her room. She had an IV in her hand and was about to receive sedation medication before having an investigatory procedure performed- and, later, some intervention procedures- in the hopes of improving her quality of life. This was big stuff for a little kid.

I heard soft noises in the background as Danielle and I spoke, and I at first thought that Alex was crying or whimpering in nervousness before being taken away from Mommy. But then I listened more closely.

Alex was not crying. She was humming.

This child was about to have dye injected into her heart, to have coils installed to curtail pulmonary AVMs, to lie on a stiff operating table that would anger her scoliosis, to be in pain.

Yet despite it all, she was still happy.

She was humming.

To help get the #EdgesToBoston this summer, please see here.

HealthiVibe Blog

This week I was featured in HealthiVibe’s “The Patient Lens” blog series, where I discussed the challenges of diabetes stigma and misunderstanding, as well as the need for advocacy. To read the blog post, please see here.

HealthiVibe does great work for patients, and for the healthcare community at large, by representing the human voice in medicine with an emphasis on the importance of clinical trials.

I am of the opinion that participants in clinical trials are of the very bravest and selfless amongst us. Those of us currently taking medication owe our improved quality of life to clinical trial participants who stepped up and said “We’re willing to do this” when these medications were being tested.

Thank you to HealthiVibe, and to clinical trial participants, for all that you do.

25.

Today is my 25th diaversary, a day I have anticipated with the whole spectrum of emotions inherent to living with diabetes. If you want the lovey dovey, Rah! Rah! diabetes blog post, I can happily refer you to last year’s diaversary musings. This year, the raw emotion needs no further introduction.

Sunday, September 27, 2015. Stanford University, Palo Alto, CA. Medicine X.

“Ahh! Dr. Bonnie Feldman’s autoimmune disease workshop already started! We have to go!” I texted my Stanford Medicine X (#MedX) buddy from Minn-e-so-tah, Britta Bloomquist.

As I hurried upstairs to the correct location, I found Sophie Thacher, a fellow diabetes advocate, and encouraged her to join.

The three of us bustled into the room just as the opening remarks were concluding, and Dr. Feldman, et al. welcomed us heartily. As I took my seat at the front of the classroom, an easel used for brainstorming ideas crashed down upon my head.

Clearly, we had arrived in comical style…

Britta introduced herself first, describing how she navigated the healthcare delivery system of Minnesota in search of proper diagnosis and treatment. When the spotlight landed on me, the words tumbled out in a nervous haze.

“I was diagnosed with type 1 diabetes just before my third birthday. January will mark 25 years since my diagnosis.”

In my mind, time stood still. My glance met that of a young doctor sitting in the middle of the room, and he seemed like one of those cartoons with thoughts encapsulated in a bubble coming out of his head.

But you’re so… young, the doctor thought.*

Yes. How has a quarter-century of living with this disease gone by already?, I blinked back in reply.*

Frankly, 25 years of diabetes is mind-boggling to me. To say those words out loud to a room full of people who “got it” was a moment that redefined my relationship with my disease.

You’re still here. Do something with that gift.

Yes, I am young. Yet my body has been poked by over 202,000 needles since my diagnosis. Diabetes has been there for every major life event: birthdays, senior prom, academic graduation ceremonies, and more.

At times, diabetes has kicked and screamed and thrown punches at the most inconvenient moments. I have shed my fair share of tears hidden in bathroom stalls and parking lots.

My 25th diaversary thoughts are an emotional teeter-totter. I feel empowered by wonderful patient communities; lucky to have somehow escaped diabetes’ truly abusive potential thus far; thankful for family, friends, and healthcare team members who loyally support my fight; disappointed that with all the braniacs in the world, the diabetes code has still not been cracked; not surprised because the one unspoken truth about diabetes is that it is a #JerkFace; yet hopeful that my future children and grandchildren will not have to know what this jumble of emotions feels like, because we are that much closer to cracking the diabetes code than we were 25 years ago.

What I most admire about diabetics is our willingness to exceed diabetes’ persistence. If diabetes is not going anywhere in a hurry, neither are we.

Life with diabetes is one big run-on sentence, after all. Every. single. morning. we wake up and face our reality. We scramble eggs and put on clean clothes and go to school or work, all after making life-sustaining treatment decisions and prodding our skin with needles and somehow maintaining the faith that a better day will eventually arrive. That is all we can really ask of ourselves- to keep the faith.

To see 25 is a poignant reminder of the many lives touched by this disease. My heart breaks for those who never got the chance to reach this milestone. I know that they are in a better place; heaven doesn’t care about silly things like basal rates or pre-boluses. But I still hurt for their families and friends, for the joyous spirits prematurely taken from this world.

On the day of my diagnosis, I was rushed to the Emergency Room with a blood sugar value of over 900 mg/dL after my mother recognized some of the symptoms of type 1 diabetes and brought me to a local lab to test one drop of blood. The doctors and nurses were frantic to save me. The previous day, another child- about the same age as me- passed away at that very hospital; his type 1 diabetes had not been diagnosed and treated in time.

I do not know that little boy’s name. I do not know his family, or who he would have become. But this 25th diaversary reflection is just as much about his story as it is about mine.

*****

When I was a child, my father occasionally climbed into bed with me in the morning. He would prick my finger to check my blood sugar, squeeze the blood onto the test strip, and determine the proper insulin doses.

He would also hug me tightly, whispering, “If Mommy and I could take diabetes from you and instead have it ourselves, we would do that in a heartbeat. One day soon there will be a cure. We will eat whatever we want and never have to worry about insulin again.”

My back turned to him, I discreetly wiped away tears until he left the room.

The cure may be 25 years tardy as far as my family and I are concerned, but what is most important is that it eventually gets here. If the cure does not arrive in time for me and you, then we have to at least scatter the trail of breadcrumbs for those who will come after us. Our diabetes legacy is not so much about the individual A1c results, but more about how we make the world better before we leave.

Until diabetes is a thing of the past, I will always be that little girl, blinking back tears in an act of strength, praying for the cure.

Here’s to 25.

*Cartoon thought bubbles source: Microsoft Office clip art

**Facebook has deactivated my personal account because apparently they forgot to have an extra cup of very light, no sugar coffee last week. (Facebook’s overly-dramatic names policy is not in favor of the nickname on my account. #LameBook) In the meantime, please follow my Facebook fan page here and share with your friends. Thanks!

Oh Snap.

Wishing the #doc a Merry Christmas and Happy 2016! Thanks for reading Very Light, No Sugar this year! 💙

Livin’ Lyfe with Diabetes

Today I am thankful to the good folks at Lyfebulb for featuring my diabetes Lyfestory, which can be found by clicking the link here.

Over the past few weeks, I have admittedly been a bit burnt out diabetes-wise. Writing my guest blog for Lyfebulb was refreshing, particularly in recognizing the strength that diabetics so often tap to deal with whatever diabetes throws at them while living “lyfe.”

Many thanks are in order for all of the support that Lyfebulb brings to the diabetes world through their work.

PS- On a cute note, my Dad saw the link to the Lyfebulb post when a friend of mine shared it to Facebook. He printed it out and is eagerly sharing with family members now. I guess the #doc has that effect. 😉

PPS- Here is a non-diabetes-related picture from my newfound hobby of college basketball. It is also a shout out to two of my favorite people. #gofriars

Go Friars

Milestones.

This week will be my final class before graduating with my Master’s degree at the end of December. The saying about a weight being lifted is true. As I handed in my final paper last week and my classmates hoorayed, happy to see one of their own crossing the finish line, I instantly felt relief.

Unless you live under a #doc Twitter rock, you know that I was on an emotional rollercoaster last week. I second-guessed whether I would get my final paper done in time. Mostly, though, that doubt was due to the anxiety of moving forward in life, of leaving behind the structure, love, and discipline that grad school has blessed me with over the past two years.

As much as I have complained about homework on the weekends, truth be told, I will miss the academic environment very much. There is a definable purpose there, a working towards something greater than oneself, a joy of learning amongst peers and professors who are just as passionate about healthcare and making the world a better place.

Grad school becomes a part of one’s identity, and I am scared out of my mind to not cling to that role soon. My go-to introduction spiel at cocktail parties has been, “I’m Ally. I work fulltime at _____ and I go to grad school at night at _____ and have I mentioned how freakin’ busy I am all the darn time?!!” As fulfilling as these different components of my life are, it is now time to put what I have learned to good use and to explore new opportunities- after taking a much-needed vacation.

My identity as a graduate student may be shifting, but I do not necessarily have to be lost. Perhaps I have already been found, and that is what is so scary- those moments of truth where you reconcile who you are, with who you have been, with who you want to be.

Complicating such notions is the fact that today marks my one year shot-o-versary, or the anniversary of returning to a multiple daily injections regimen after a decade of insulin pumping. I have beaten a dead horse over this, but in case you are new to Very Light, No Sugar: Insulin pumps are great. Sadly, I experienced product defects with mine and watched my health slowly slip away as a result. The pros of using injections for me, personally, outweighed the cons, so here I am. Do what works for you.

My current apathy about the shots milestone surprises me. In many ways I expected to be just as proud about the shots as I am about my impending Master’s. But I’m just… not. Shots are my new normal. Some day that may change (diabetes cure, please!), but for now, this is what I am working with.

And to be honest, I think that apathy is a good thing. It means that I have made peace with some of the previous bitterness, that I have chosen to chalk up the pump company’s ignoring of my email pleas as being due to an overloaded pump rep.’s inbox, even though I know in my heart that was never the case.

I now experience the freedom of insulin getting into my body every time I inject, and those #JerkFaces also known as ketones do not hang around much anymore. I have proven to myself that I am stronger than I ever believed, and that it is good that we have many options in our diabetes management tool boxes.

Every day, I have access to life-sustaining medication, something I will never take for granted again. Others are not as fortunate, and I am attuned to their suffering because my faulty insulin pump taught me what it feels like to lack insulin. It is a brutal, desperate torment. Only insulin can fix it. And while I feel blessed to have escaped my insulin-delivery mishaps, I will always remember and pledge to help those who do not have access to insulin.

I recall emailing my doctors a week into our shots trial and implying, “Hey, I tried. Time to call it quits and return to the pump?” And I remember my dismay at their gentle urging to stick it out one more week, one more month.

Today- one more year- I am happy that I listened. The difficult days are still here. But the good days are back, too. Any day not spent battling ketones on the couch is a day that I must be thankful for, and I am. I just need to work on expressing that more often.

So here it goes:

I am thankful to have enjoyed the opportunity of receiving a graduate-level education. During the days of my insulin pump saga, when the ketones were syrupy-thick in my blood and the couch was my home, grad school was the bright light that I could focus on. I read and read and read and repeatedly told myself that one day I would feel better and have my degree.

Today, I am happy to be here to see that internal mantra come to fruition. Thank you to everyone who has rooted for me along the way. My gratitude is best expressed by leaving you with the prayer said on my long drive to Boston before difficult medical appointments:

“In every circumstance and in all things

I have learned the secret of being well fed

and of going hungry,

of living in abundance and of being in need.

I can do all things in Him who strengthens me.

Still, it was kind of you to share in my distress.”

-Phillipians 4:12-14

Your Grandma’s Diabetes Vignette

“My grandmother died of diabetes,” my ‘boyfriend,’ Jake, mentioned offhandedly as we climbed rocks in the woods behind his home.

We were in fifth grade, and the act of dating consisted of parentally-supervised playdates a few times each month and the added privilege of swapping prince and princess Disney-themed Valentine’s Day cards in February.

“No she didn’t,” I retorted.

“Yes she did. She got really sick. I don’t think she had to take shots like you. But the doctors said she died of diabetes.”

“People don’t die from diabetes. It must have been something else,” I replied, shaking my head as if to dispel the prospect.

The thought had never really crossed my mind before. I knew low blood sugar left me pale and shaking on the floor. But did people actually die from this stuff? I pushed the notion to the anxiety cupboard of my mind, a place from which I often plucked a topic to pester my mother about on the car rides home from school.

“Do people die of diabetes, Mom?”

“I don’t think that’s something you have to worry about,” was along the lines of her response- a well-played verse which straddled the line of truth just enough to shield me from the painful reality of the answer.

I packed the concept of death via diabetes back into the anxiety cupboard of my mind and closed the door tightly. Why had he said it if it wasn’t true, though?

Today I realize that Jake simply wanted his grandmother’s story to be heard, especially by someone who understood firsthand the turmoil of the disease that took his grandma away from Christmas mornings with her grandchildren far too soon.

If I ever walked into a bar now and happened to find Jake swigging from a frosty mug, I’d tap him on the shoulder and tell him that his grandma’s diabetes is different from my diabetes, which is different from your diabetes, which is different from Ryan Reed’s diabetes.

Then I would buy him a beer, apologize for his loss, and sit down and listen to his story.

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	Rick Phillips on Christmas Card 2022
	Ally on Christmas Card 2022