Mask Emoji Collage

N95. Surgical mask over it. Mess up your hair. Pull the straps tightly behind your ears. Imprinted lines cross your cheeks. Stay home. Receive the Eucharist in a Church parking lot. Talk to others, but only outdoors or through a blue light screen. Your mic’s not on. Post-viral illness. Healthcare burnout. Lonely. Tired. Scared. Informed. Public health. Empathy. Ambivalence. Fatigue. Vaccines. Airborne. Waste water. Ventilation. Filtration. Purification. Capitalism. Germs on your hands and in your lungs. Cognitive decline. Cognitive dissonance. Vascular effects. Long Covid. Humanity. Can we endure another 1000 (2.5) years?

The masks should’ve been the easy part.

Gym, Tan, … Insulin Pump?

The return to insulin pumping continues to be mostly smooth sailing. As I’ve shared in other outlets, I am running ‘exercise mode’ on the t:slim a majority of the time during this transition phase. Simply stated, exercise mode creates a larger blood sugar buffer zone, in theory to minimize hypoglycemia risk while working out.

Emotionally, this option is helpful when taking the initial leap of faith with these fancy pumps in that there is room granted for fine-tuning. My doctors and I also decided to err on the side of exercise mode due to physical safety reasons. In layman’s terms, ‘early worsening’ is a phenomenon in which rapid decrease in Hemoglobin A1c can induce too much stress on the blood vessels, aggravating or causing complications of diabetes. Because the pump was most likely going to stabilize my blood glucose range more so than injections had been, we expected an A1c drop. Utilizing exercise mode constantly, for now, mitigates some of this effect by gradually reducing average blood sugar levels while (hopefully) preventing damage to the body.

‘Early worsening’ is one of the cruelest aspects of diabetes. Society yells at us our entire lives to, “Just stay in control of your diabetes!” – as if our health was not affected by a gazillion different variables each day. When folks finally start feeling physically better in an acute stage of lowering blood sugars, the risk of long-term damage can arise, possibly unbeknownst to the individual with diabetes if not made aware of this counterintuitive concept.

Talk to your own healthcare providers before changing your diabetes management. This is simply an idea that has worked for me thus far, and I believe the topic should be on our collective radar more often. As time goes on, I will likely tweak my style again to a different mode of pumping with a tighter blood glucose range. For now, though, I am still hopeful for the ideal mode one day in our futures: cured! (Accessibly, affordably, and equitably, of course!)

Implementation and Design, Add Wine

*Content warning: This blog discusses and contains images of insulin pump, continuous glucose monitor (CGM), and blood sugar values, which can potentially be upsetting in relation to personal diabetes challenges. Please be advised of this before reading further.

I recently made the leap of faith to Tandem’s t:slim insulin pump with Control IQ software, and my mind is totally blown by all this tiny machine does akin to a normally-functioning pancreas each hour. Many others have chronicled their positive Tandem experiences, and at a later time I hope to join them with further blog posts. But the more pressing theme begging me to be written is one of design. Taking Stanford Medicine X training to heart, I’ve employed a discerning eye in the pros and cons of this pump from a user experience and design perspective.

Assumedly, the brilliant computer and biomechanical engineers at Tandem had their reasons for how they manufactured and coded this insulin pump. I’m not here to argue against their science, as this pump has already been life-changing in my own n=1 study within a few short weeks. I do not know if they consulted with any focus groups of people with diabetes in their creative processes, and I cannot falsely purport to represent everyone else’s opinions here. So with those disclaimers, for what it’s worth, here are my implementation and design 2 cents:

The Big Picture Design Pros:

If People magazine ranked the sexiest medical products on earth, this pump would be up there, just saying.

Having Dexcom tied right into the pump is not only helpful from an algorithmic, insulin-dosing standpoint. Simplified, it is one less clunky thing to carry. I still sometimes reach for my old Dexcom receiver out of habit, only to realize that now one small device clipped to my belt or slipped into my jeans pocket is simultaneously running the insulin show and serving as my Dexcom screen. (See also the diabetes online community (DOC) for enhanced pump clip suggestions!).

The algorithms…

provide far more input than any human being can possibly do each day. I plan to blog about the emotional aspects of this pump in the future, but to briefly convey it here- this concept has given me a level of peace after three decades’ worth of managing my own diabetes. People with diabetes are handed blunt instruments and routinely yelled at by society and medicine to essentially, “Just dose insulin and achieve ‘perfect’ control (which doesn’t exist, by the way), and no matter what happens, it’s all your fault!”. Watching this pump adjust my basal rate 32 times and microbolus twice, just in an overnight timeframe, to keep my blood glucose at a stable, safe line really hammered home how innovative this technology is, how much I wish everyone worldwide had easy, affordable access, and most glaringly, that what we have asked people to do for decades was never remotely possible. We tried our best, but we just plain can’t kickstart a faulty pancreas 32 times overnight, every night, forever.

Infusion sets

While I wish there had been more opportunities to test drive infusion set samples prior to the official pump start, I finally rationalized that kinked cannulas were one additional worry I did not need when returning to pumping after a long hiatus. Tandem’s TruSteel sets have been a breath of fresh air in terms of trusting that insulin is being delivered fully and properly, and the pain of having a needle set under the skin for a few days is negligible thus far when compared to the searing pain of needle-into-muscle from the past / competitor sets.

Built-in safety checks and balances

I feel comfortable that this pump will not accidentally bolus insulin in my sleep or if jostled in a crowd due to the many safety mechanisms included. The prompts explaining the basic steps involved with a cartridge and site change are helpful, too, as extra reminders of when to detach from the pump and what should happen next.

What I Would Change:

Again, see the disclaimers above. I am not saying Tandem did not have reasons for their current designs. But from a user point of view, I hope they will consider consulting with patient advocates and trying new ideas in future models.

Place the most important data in larger text on the screen!

My eyes are still functioning fairly well for my age, yet I am often frustrated by the pump’s tiny displays of numbers, which really matter in the diabetes experience. In my opinion, the Big Three are current Dexcom reading, insulin on board (IOB), and the amount of insulin being dosed via a bolus when applicable. To add a fourth option, current basal rate number would be helpful to have displayed upfront on the home screen, too.

Particularly when a bolus is occurring, the text at the bottom of the screen is far too small. I’d recommend Tandem take away approximately 1/3 of the Dexcom graph space on the home screen (the pink sticky note space in the example photo below), and use this bonus area to incorporate larger font for the data more frequently relevant to people with diabetes. For example, while it’s cool to see my blood sugar graph from the past 3 hours, I’d rather swap in some extra clicks to get to that particular graph than constantly have to jump to other screens to see my current basal rate or time of last bolus. Sacrifice that Dexcom graph space to personalize what the user wants to access easily in future models.

I’d additionally recommend inserting a “Favorites” option at the bottom of the home screen, similar to saving tabs in a web browser, in which the user can input screens they turn to often. For example, my personal preference is to go back in the History display and analyze boluses from the past few hours, which may inform how heavy a bolus I take now. Other users may find helpful meaning in Dexcom chart data from the past 12 hours, and wish to access that tab faster. If users could implement their own Frequently Utilized sort of list for themselves, this simplifies the diabetes management process even more so than this pump already does. At the end of the day, when people with diabetes are still piloting this plane, all of the little clicks and taps we make add up over time. How might we respect further design autonomy in future models?

Training / Communication

I can only speak for myself, and I want to be clear that this is not a gripe against the knowledgeable, compassionate Tandem representatives I spoke to many times over the phone, nor to my individual Tandem specialist trainer who calmly assisted in making this process doable and has been kind in yielding questions and checking in as needed. They are working within a larger, broken healthcare system and trying their best with what they have.

Yet I must express, the pump start up process was haphazardly piecemealed together and poorly communicated, particularly when obtaining initial supplies and making appointments. If not for the navigational persistence garnered by my professional and educational background in healthcare, I’d probably still be at Square One without a pump. I made dozens of calls between Tandem, suppliers, and the Endo clinic, babysitting, “Okay. XYZ is done. What’s the next step?” And many times no one seemed to really know. This bureaucratic disorganization delayed the actual pump start date for weeks.

Many of us have thirty or ninety days’ worth of supplies worked out with insurers and suppliers. We are being asked upfront to spend hundreds of dollars on large orders of infusion sets which may not end up being best for our individual case, for example. Or then the Endo clinic prescribed many boxes of infusion sets but not enough cartridges. The general oversight has been lacking. If not for kindhearted members of the DOC and friends already using Control IQ, I would have been even more lost as I sorted out initial tips and tricks for an ideal pumping experience.

Endo clinics and major diabetes industry names and so on do not have to like me or consult directly with me, per se. But that said, the wisdom of the lived experience is so valuable. (If you believe in real patient advocacy, reimburse such expertise accordingly, by the way). I would be happy to be hired as part of a focus group on formulating a more comprehensive, linear implementation training guide to help clinics, pump companies, and diabetes patients, alike, in safely and successfully getting situated on a new pump. (If your company is interested, feel free to leave contact information in the comments on this page and I will email you back). And again, if not me, please consult with other patient advocates. I am sharing oodles of feedback here because I want people with diabetes to have the best quality of life and health that we can, but a good company will not just take such ideas and run away; this work involves deep, meaningful engagement between all parties.

Cartridge fills / site changes

No matter how many years I’ve been away from pumping, I still grimace on site change days- not so much in terms of acute pain from the needles involved, rather due to time, inconvenience, and complexity. I’m not the first to note that Tandem’s process is tedious; my user guide is Post-It-Note-tabbed to pertinent instructive chapters, which I read at every site change. I’m using “site change” interchangeably with “cartridge change” here, but the latter part is actually the burdensome aspect.

While Tandem’s “inject air into the insulin vial, remove air from cartridge” routine does seem to make a difference in terms of maintaining insulin efficacy within the pump, the cumbersome tools and learning curve to get there could use improvement. The miniscule white cartridge hole where one must insert a ginormous needle to spray hundreds of units of insulin is daunting when first using this pump. What if I accidentally stab my own thumb?!, I can’t help but think each time. Assumedly there are biomedical designs here to keep the insulin clean and secure via the small cartridge hole, but this is an area to seek change. Additionally, many official training videos skip over the actual filling the cartridge with the needle part, but this aspect is so important if we are to avoid air populating the cartridge inadvertently.

Supply Adequacy

The inherently poor design of our American “healthcare system,” by nature, is responsible for this critique. Third party suppliers, diabetes companies, and even healthcare providers’ prescriptions nowadays mainly opt to allot the exact amount of diabetes supplies, with no wiggle room for the inevitable rainy day mishaps. When in doubt, call customer service, they proclaim! Prompting those of us in the trenches to wonder, “Have you ever waited on hold listening to the seventeenth string symphony orchestra practice squad on speakerphone while working fulltime to pay these bills?” Yeah, we didn’t think so.

Companies would save time, and I’d even argue, some money when all comes out in the wash, if they provided even a few spare infusion sets or Dexcom sensors over the course of one year, rather than perpetuating negative experiences when life happens and we need more. Surviving with not one extra centimeter by which to breathe is fundamentally unjust to the customers with health conditions padding these companies’ pockets. Put your customer service energy elsewhere, do the right thing, and eliminate this problem by conceding at least once per order that something may go wrong, but you’re going to own that as a dependable company and provide a back-up option.

Emotional Support

We hear about the transition for Service Members coming home after combat tours and experiencing a tough readjustment to the civilian world. Their guard has been on high alert for months, and now we expect them to just jump back into mowing the lawn, holding down an office job, or socializing at a party, as if the traumas they endured and witnessed never happened?

Although this pump has rocked my world already, there has been an emotional element which I am still similarly processing. On shots, I got accustomed to trying so hard each day and not really witnessing the fruits of that labor very often. The long-term outlook was so grim that I couldn’t even visit there in my mind. Time would eventually just stop, probably.

So I found myself sobbing when a provider recently asked me to go there, to try to imagine a different, better course with the help of this pump. I need more time to heal fully, to reacquaint myself to the light of a calmer world. Such a good thing still hurts because of the tender scar tissue.

Healthcare clinics should at least have this concept on their radar, particularly when training patients who have never pumped before or are returning from sabbatical. These fancy new pumps are jaw-droppingly good at what they do, and that isn’t a bad thing. But the shock and awe mean something, too, and we should strive to optimally support people with diabetes in these next chapters.

Disclosures and disclaimers:

I own Dexcom stock, although this truthfully has no effect on my ultimate aim of improving quality of life for all people with diabetes. No matter what, my feedback will always be candid.

I wrote this blog on my own volition, and although I hope the diabetes industry will listen, these views and ideas are solely my own.

Use diabetes medical devices at your own risk and based on guidance from your medical providers.

This blog is not exhaustive and surely there is more food for thought to come.

Full Circle

When I created this blog (almost 8 years ago!!!), I was looking for social and technical support. Rather, I was desperate for help. My insulin pump and its related infusion sets were fundamentally failing me at every turn, not delivering the life-sustaining hormone of insulin properly and leaving me stranded in the desert without water (i.e., with high ketones). I was terrified to make the leap from the pump to multiple daily injections (MDI), but eventually, it was the only real choice. I needed my quality of life back, and that meant sacrificing the fine-tuning capabilities of an insulin pump, namely, basal insulin rates, for the assurance of watching the insulin actually (and successfully) enter my body via the old-fashioned syringe method. Injections may not be fancy or perfect, but they certainly eliminate the bent cannula worry inherent to pumping.

Alas, flash forward to now, and I’m strongly considering making the opposite switch in diabetes management- something I never thought I would say again. I’ve moved mountains to change my own relationship to anxiety and become able to forge forward, regardless of fear, knowing that I am capable of handling difficult situations. (This is all due to hard-fought access to resources- learning powerful new skills, which I know many others sadly do not have access to. I will never stop fighting for each of us).

I’m able to embrace the uncertainties an insulin pump introduces, again. Cannula problems are sure to occur occasionally, but I’m hopeful this will truly be rare, rather than weekly as I experienced in the past. Notably, I am switching to a totally different brand of pump than what I previously used to gain a fresh start. Yes, I’m purposefully being vague about the pump brands here, for now.

Friends from all walks of life (and A1cs) have raved about the infusion set improvements in current pumps on the market, and how their daily interactions with diabetes feel more doable. Conceding “control” to diabetes technology- a huge fear in the past- is now a welcome change to me. After 31 years of type 1 diabetes, I’m open to giving this tech a shot (See what I did there?) and allowing it to alleviate some of the individual’s constant burden of T1D management. I know it will not be pretty every single day, and that there will be an enormous learning and readjustment curve with this new tech. But I also know that I want more in life. There are too many days where diabetes has me feeling physically crummy, especially after interrupting my sleep all night. This translates to having very little patience for the everyday hurdles in life- diabetes aside- and consequently being stuck on an emotional rollercoaster.

The financing of a new pump, alone, is daunting. I know how to navigate, and thankfully I can afford this although the cost makes me wince. Yet I’m aware that so many elements of this process are far out of reach for many people with diabetes, locally and globally. My privilege is never far from my mind. Now is the right time to take this bet on myself and my own health, and I acknowledge I am blessed to be able to do so. (Don’t even get me started on commuting for all of the healthcare appointments leading up to this while juggling work, etc. It’s all overwhelmingly exhausting before it even begins. But again, I feel fortunate for this acute mess, simultaneously.)

Perhaps the next time I post here I will officially be back in insulin-pumping, robot mode. It’s been a very long journey, but I’m ready – and dare I say, excited- to embrace this change.

#TuesdayRain of 2021

2021 was a rather weak year in our historic Tuesday Rain tracking, with 18 total Tuesday precipitation events. (Locally, we probably should have followed Friday’s frequent monsoons, instead!)

March, April, and November of 2021 notched zero instances of Tuesday precipitation, contributing to the lower overall count last year. 2020 saw 27 Tuesday weather events, with 2019 marking 31 and 2018 experiencing 29, for comparison. So far we are off to a sluggish start in 2022, with 2 total Tuesday rain or snow events thus far.

Regardless, the weather and taxes are a few things we can depend upon in life, and my friends and I will record Tuesday rain events for the indefinite future. Thanks for playing along with us.

*Photo Credit: 2021 Horses calendar, Greenbrier International, Inc.

31

I recently marked my 31st diaversary, or diabetes diagnosis anniversary. At this point in the game, it often feels like just another day. I am sad that the cure my family was repeatedly promised many decades ago still eludes us, and that the emotional, physical, and financial costs of daily diabetes survival place far too much burden on the individual. Simultaneously, I recognize my own luck and privilege in making it this far.

Given the concern for type 1 diabetes (T1D) diagnoses, particularly, in adults and children post-COVID-19 infection, I intend to do something useful with this diaversary and remind others of the main warning signs of diabetes:

-Increased thirst

-Frequent urination

-Rapid weight loss

-Fruity odor on breath

-Shallow breathing due to diabetic ketoacidosis (DKA)

-Agitation and/or fatigue

These signs can be experienced following a viral illness such as COVID-19, as a viral trigger is thought to be involved with the autoimmune attack in T1D.

As for me, it’s just another day with (hopefully) many more to go. I remain hopeful that through our advocacy efforts, future generations of people with diabetes will have improved quality of life- whether it is diaversary number one or thirty-one.

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