Brushing and Flossing

I made a commitment to myself to pursue dental care this year following a lengthy hiatus fueled by various barriers to care- sorting out dental insurance, COVID-19 safety precautions, and generalized work/ life hecticness superceding this specialty. Despite knowing how important periodontal health, particularly, is for people with diabetes, with all of the other healthcare appointments we endure, I’ll admit that my chompers took the back burner in my mind for too many years.

I definitely needed a tune up and received homework from an initial appointment roughly six months ago: rinse twice daily with antiseptic, floss far more frequently than a few times per year (cringing as I write this), procure an electric toothbrush for thorough cleansing, and overall just be more attentive to intertwining dental upkeep into my typical routine. I’ve always been a nerd, so I took the assignment to heart and I’m proud to say I’ve diligently maintained the plan.

At a recent appointment, the hygienist praised my improvements, fueled by my obvious newfound dedication to the cause.

“I can really tell that you’ve been doing everything we suggested. Your gums and teeth look healthy and you’re back on the right track. Please keep up the good work!”

“Honestly, it’s so nice to hear that. With type 1 diabetes, we try so hard every day but our resilience is not always reflected by objective results. I’ll take the dental win here, and it’s nice to know my efforts are actually working,” I replied.

I can’t stop thinking about the juxtaposition between diabetes-related healthcare and this specific dental appointment. My healthcare providers have certainly been empathetic about the difficulties of managing an unruly, sinister autoimmune disease, but I cannot recall a time when I’ve received a glowing report card in over thirty years of T1D. That notion hurts my heart, for all of us.

I must give credit where due to this new dental clinic. I shirked my way into their care, eyes downcast, ashamed and embarrassed that I had fallen astray for many years, and generally afraid to receive the typical scoldings people with diabetes garner from healthcare’s inherent biases. To my relief, this clinic welcomed me and met me where I was at. There was still time to enact change and see improvements, rather than wallow in the past. Their supportive attitudes encouraged me to go home and follow instructions, and I feel better having done so.

Imagine where we could go if every branch of healthcare got on our level and created a reasonable gameplan. I’m grateful that in this area of my life, at least, I’m on the Honor Roll again.

7.

Very Light, No Sugar celebrated its seventh blogoversary last month.

Transparently, I often post once monthly nowadays simply to say that I still do so, which I recognize could be an unhealthy habit. The brutally honest answer is that other responsibilities take up a disproportionate amount of my time lately- by virtue of surviving my own healthcare journey and paying those bills by working (probably) too hard. I hope to one day return to blogging with the previous fervor and passion, and perhaps that is why I still post, however infrequently- in the hopes that I find my way back someday.

There are other mediums of advocacy such as attending events or discussing with friends, and perhaps I have simply ebbed and flowed with the times. I imagine other bloggers and advocates relate to this tempo of balancing life, blogging, and beyond. I certainly concede that diabetes blogging does not revolve around me; however, as for this blog, this explains my current status. There is no set in stone rhythm when writing, and perhaps acknowledging that is advocacy in and of itself.

Whatever the case may be, please know that I am forever grateful for those in over 100 countries who have visited this website and supported healthcare advocacy over the years. Undoubtedly, we have helped others through our collective mission, and for that reason, it is always worth it.

Cheers,

Ally

T1D in the COVID-19 Era

Throwing together some advocacy discussion fodder more publicly here, as requested:

There have been reports of type 1 diabetes onset status post COVID-19 infection, as well as diabetic ketoacidosis (DKA) and insulin resistance being related threats when it comes to COVID-19 treatment. While I’d be remiss not to mention the main grad school 101 lesson, “Correlation doesn’t equal causation,” (meaning that we do not know for sure that COVID-19 may or may not cause or complicate diabetes yet), we can still take commonsensical precautions in the interim to prevent further possible suffering. I will be the first to admit that I’m not going to do your homework for you here and link to various articles and tweet threads on these topics; they’re out there if interested, and I’m writing this blog as a highly-generalized, well-intentioned commentary with the disclaimer that we do not have all of the answers yet and the advice here is shared in an abundance of caution and transparent discourse.

We need more research data and more analyses of these theories, plain and simple. ‘Awareness’ is often a diluted catch phrase in healthcare advocacy, but in this instance, knowing what may happen – while we iron out the scientific facts of the matter – could possibly save lives and quality of lives. For these reasons, I don’t think relaying the message hurts us, with the understanding that more research must occur.

The prevalent theory on the cause of type 1 diabetes (T1D), an autoimmune condition, is that the perfect storm of factors – viral trigger, genetic predisposition, and environment (often stressor-related)- culminates in a diagnosis- that is if one survives the common DKA at onset and is swiftly treated with insulin. Time is of the essence, life or death, here.

Theoretically, COVID-19 plays into this theory perfectly, being the viral trigger that gets the ball rolling in some cases of T1D, with the person’s immune system having been sent into overdrive by the infection. Healthcare professionals have reported that COVID-19 does not play well with pancreatic function, often requiring highly elevated basal insulin rates and thwarting DKA in the process of treating COVID. None of this sounds remotely fun and should be impetus to us all to do our part to protect ourselves and others.

If you’ve contracted COVID-19 recently, in my humble opinion it is wise to be aware of the warning signs of type 1 diabetes given a qualitatively potential risk post-Covid-infection. There are fancy posters and awareness campaigns which display this information in a prettier way than this blog post, but for what it’s worth, the main symptoms of T1D which I advise others to watch for are the following, among others:

Extreme thirst

Frequent urination

Fruity breath / odor

Blurry vision

Significant weight loss

Ketones may present a heartburn-like sensation.

If any of these symptoms are present, contact a healthcare professional (HCP) / emergency room immediately, and demand to be tested for T1D. If HCPs are downplaying the odds, and if you can afford this option, purchase a blood glucose meter and test strips, or urine ketone strips, over the counter at your local pharmacy and check on your own. If results are elevated, this bolsters your point that you need to be seen immediately regarding a possible diabetes diagnosis.

The anecdotal evidence is quite strong that we may face an influx of diabetes in the era of COVID-19. We might as well start talking about it.

Patient Advocacy in a COVID-19 World

A prominent pharmacy chain recently contacted me regarding an upcoming COVID-19 vaccine appointment. The only problem was that I did not personally book said appointment… My antennae were raised upon being instructed to click a link and provide all of my personally-identifiable-information (PII). (No, thanks!)

Upon further inspection, this was all legitimate correspondence from the pharmacy, however poorly expressed. After a phone conversation, Pharmacy informed me that they were automatically booking vaccine appointments for folks who were not showing as having been vaccinated per the Pharmacy’s vaccine records, alone.

I get it. The delta variant poses damage we cannot even begin to fathom yet, and vaccines coupled with masking (for those who do not have genuine medical contraindications to these measures) are our best communal ways to fight back. Pharmacies have a vested (heavy emphasis on the dollar signs) interest in public health.

Yet, I could not stop thinking about this interaction from a patient advocacy perspective. For starters, this poses fraud and safety issues for those already vaccinated outside of the Pharmacy system. Health literacy is different for each of us. What if someone already vaccinated who, through no fault of their own, does not fully understand the vaccine process then becomes quadruply-vaccinated via these pre-booked Pharmacy appointments? What if a vaccine card is obtained at the Pharmacy, but the previously-vaxxed individual already had a card from the original vaccine site? Etc. This well-intentioned public health project needs better organization and communication to run smoothly. Involving patient advocates in the process would have been a good place to begin…

For what it’s worth, these simple steps could drastically improve Pharmacy’s outreach:

1) Make the appointment messages MUCH clearer. The current text is a sketchy-looking link that most people are not going to trust. The appointment is automatically booked by the Pharmacy on short notice without asking the individual about availability. (This is not a good look! As advocates, we know barriers to healthcare such as time off from work or child care will affect when people can receive vaccines. I would even argue the Pharmacy made their own work more difficult by automatically booking because so many will not be able to attend at the magical, preset date and time, and the Pharmacy consequently has to deal with numerous phone call questions!)

Communicate WHY this appointment is happening within the reminder message, i.e., “Our Pharmacy records, alone, indicate that you have not received the COVID-19 vaccine(s) within our Pharmacy system. To aid public health efforts, we have booked this appointment for you.”

2) Meet people where they’re at.

Make this an opt-in process at the point of purchase, such as the pharmacy counter. Educated pharmacists and pharmacy techs can explain why the vaccines are necessary. People will be more likely to say “yes” during in-person conversations, much like car sales events.

Pharmacy is being presumptuous by insinuating that people have not received the vaccines if not shown in the Pharmacy records. Instead of scapegoating, corporations should invest more in creating real world access opportunities. Perhaps there is a local town with a low vaccination rate? Host community events outdoors where members can easily witness firsthand that vaccines are safe and effective, and that others in the community are signing up for their shots then and there.

3) “But Ally, shouldn’t we have a nationwide, interconnected electronic health record (EHR) so that we can avoid some of these issues?”

I could write another long blog on this, but my personal short answer is, “Not interested!” I prefer to control my own data at each respective healthcare interaction. We know there are conscious and unconscious biases in healthcare, particularly for women and/or people of color, and often it is nice to start fresh with a new pair of healthcare provider eyes and a new EHR at certain appointments. I am happy that Pharmacy does not know more about my health than it already does, in this case. And it can be a slippery slope of giving up our access once that ball is rolling- COVID-19 or not.

Also, the idea of an interconnected nationwide EHR in the United States has floated around for decades now. As a simplified response to this, my bet is that it will never happen to the idyllic degree that some want it to; we are too selfish from a corporate, capitalistic sense to allow one big bad wolf to control all EHR content when we can have multiple packs tearing into the meal all at once.

4) To summarize, this seemingly small marketing campaign could have tenfold positive effects if Pharmacy had consulted directly with patient advocates (and paid them accordingly for their time and knowledge). We know what to look for and how to make healthcare better because we have lived it day in and day out for decades. We want improved quality of design (and quality of life) for all involved. And while we concede that we are living in bizarre times considering the pandemic, this is not an excuse to cut corners and rush. A few edits to the messaging could make a world of difference and help change the course of COVID-19.

On healthcare conference hashtags

This is not to say

‘There aren’t good eggs’

who care about people with diabetes

like you

like me

who recognize the humanity in us all

who dry the tears and wipe the blood

away

It is to say that ‘we’

the hashtag statistics

the numbers

the time in range

whatever that is

the semantics we are spoonfed

while poked and prodded relentlessly

CGM needles piercing the abdomen

lining the pockets of the yacht owners

‘This is us’

so-called specimens under the microscope

We

are still worthy

people

Banting and Best and all the rest

As I recently limped my way towards an endocrinology appointment post-foot-surgery (impending long blog story to follow when time permits), the two iconic names of Banting and Best jumped out from the wall of Joslin Diabetes Center, commemorating the 100th anniversary of the discovery of insulin in fashion.

My inner perfectionist was not a fan of the lighting of the photo below, as the bright Boston afternoon sun mingled with shadows across Joslin’s diabetes tribute wall. But then I realized that perhaps the most important words were highlighted after all, reminding us that the purpose in diabetes advocacy is to serve those touched by diabetes as best we can, to honor healing as a form of art.

And so the photo stands.

This bunny grazing nearby Longwood Avenue- otherwise known as the ‘nonstop sirens-filled hub of the best healthcare in the world’- was a peaceful reminder that life rolls on despite the noise.

Thank you to Banting and Best for giving so many of us the chance to enjoy life, 100 years later and counting. May we as a society find our way back to the selfless Banting and Best philosophy, and never stop fighting for equitable and fundamental rights to life, and quality of life, through accessible, affordable healthcare for everyone.

The Talk

Since I was a child, I have always known that something else was going on autoimmune-wise, concurrent with T1D. Randomly breaking out in hives, allergies, sensitivity to anything and everything depending on the day of the week, and so on, all muddled my experience. Type 1 diabetes, alone, is hard enough, yet we know there is often autoimmunity effect overlap in other areas.

I’ve moved mountains and scaled Everest over time to get more comfortable taking sufficient insulin- the hormone which sustains human life but can snuff it out quickly with one inadvertently “off” dose. I have learned how to sit with uncertainty, and that I can handle anything, including hypoglycemia. And yet, the physical results of this effort are often just not visible.

My greatest fear in diabetes has never been the complications, albeit undoubtedly a rough road to endure. Rather, most bothersome is the societal insinuation of “not trying hard enough,” of one day being the stereotypical diabetic friend / relative / etc. whose premature death / complications fate is erroneously rationalized away as lack of effort. Those ideas make it easier for the person assuming, because the emotions of the truth are that difficult to accept. I’d counter: Imagine living it day in and day out, for decades without one day off- not just the diabetes management aspects emotionally, physically, financially- but also having to sit with those harsh truths of knowing how most of the world sees us, and what our loved ones might hear in our wake one day.

I suppose this blog is partially to acknowledge it all, to save face a bit, to not have to explain one more time. I recently met with a doctor about some non-diabetes-related concerns. I begged for 30 seconds of her time so that I could explain: My blood sugar may not be high because of diabetes, alone; these symptoms may not be blood sugar-induced; rather, the other issues may be contributing to the insulin resistance! The words gushed forth, and to my surprise, the doctor nodded. “You’re probably onto something there. Let’s run these tests to investigate.”

Just like that- no judgment, taking my effort for what it’s always been- nonstop- despite the objective A1c results.

One far away day, if an acquaintance ever tries to put inaccurate words into my own diabetes story and I am not there to explain, I hope my family or friends can express exactly what needs to be learned: That diabetes (or other health conditions) are enormous work, and the individual always tries (even when from the outside it may not look like it, as there are so many psychosocial factors at play which cannot immediately be seen).

More importantly, I hope the recipient of the lesson sits with their own emotional discomfort, to be like my doctor- nodding, accepting that the difficulty must be painful for others, and being open to learning more.

We can’t change the ignorance surrounding diabetes overnight. But these small interactions move us closer to the legacy we deserve.

We have always tried.

30

This month I marked 30 years of living with type 1 diabetes. Collectively, my family has 55 years of experience with T1D between myself and my relative. In the past, I would have calculated and best-guesstimated the hundreds of thousands of needle pokes incurred over these diabetes years. So much of our time is spent analyzing numbers and trying to find meaning in it all.

My 30th diaversary, however, was mostly met with ambivalence on my part. When a friend texted me to be kind about this milestone of an anniversary, I replied succinctly, “Thanks. Honestly, today has just been another day. And I’m okay with that.”

This is not to say that I’m burnt out, or ungrateful, or anything else negative and patient-blaming which healthcare so often unjustly engages in. Rather, quite the opposite. I was ambivalent simply because my interests have shifted over time, and diabetes no longer takes up the bandwidth that it once did in my mind. I still struggle and suffer from the nonstop burden of diabetes management as complicated by many external barriers to care. But it’s more of a rolling with the punches experience now, rather than constantly lacing up my gloves for another round. There is peace to be found in the rhythm of acceptance, and moving towards what I value no matter what.

I also recognize the great juxtapositions here:

30 years of diabetes is a huge deal defining decades of strength and resilience. We should celebrate those achievements and express thankfulness for our supporters.

But we should also acknowledge that none of this is fair. The dial hasn’t moved on diabetes-land in the ways that we need for every person with diabetes, everywhere, to have good quality of life. We still need a cure. We still need better insulin treatments, and we absolutely need these options to be readily accessible and affordable for everyone. No more jumping through hoops; just commonsensical, “Can I quickly access what I need to live well even at 3:43 am in a snowstorm?” sort of standards of care. We’re unfortunately still far from these equitable meters of QoL.

It is not lost on me that many people do not get a chance to write a 30th diaversary blog post as they may have hoped. Factors such as missed or delayed diagnoses fueled by societal stigma and misunderstanding of diabetes; the inextricably intertwined challenges of emotional health and chronic disease; effects of socioeconomics, race, class, gender, education, environment, war or peace, and much more; and, most pressingly, global access to insulin / insulin pricing all weigh heavily on my heart today. Those who have died slowly and painfully from DKA, particularly, remind me that even though ambivalence at 30 years of surviving an unrelenting disease is acceptable, my own years cannot be in vain. My story could have begun and ended differently. Others were not so fortunate, and our advocacy must honor them.

Despite the daily challenges posed by diabetes, I am still here, through hard work, yes- but also through lots of luck and privilege. We are allowed to be cognizant of each of these contributors to diabetes care, to be proud and happy when we feel well and achieve our goals, while simultaneously mourning the support we lack personally and universally in our diabetes care trajectories.

I feel all of that today.