Lucky

“Have you had Covid yet?”

“Not to my knowledge.”

“Wow! You’re lucky!” the nurse replied, prepping the alcohol swab for my latest booster shot.

Lucky.

Surely, true to some extent. Privilege, or lack thereof, indeed affects the Covid course depending on who we are. This blog is by no means a critique of those who have experienced Covid-19 diagnoses; when government and public health responses fail so profoundly, of course many of us will be exposed in an airborne pandemic. Nor is this a condemnation of the nurse’s words. She was kind and simply making conversation. I imagine many of those she vaccinated recently had answered the question differently than I did, prompting her surprise.

With those disclaimers out of the way, I’m still thinking about that word, lucky, and its part in public health.

I have certainly increased my chances at luckiness by double-masking indoors with an N95 and surgical mask over it a majority of the time. I freely admit that I am human and messed up during some social situations in the past, but I am striving to stay the course now. I’ve gotten vaxxed and boosted. I’ve avoided large, crowded indoor events and indoor dining 98% of the time for almost 3 years now. So many in my educated healthcare social circles have done the same- with my immunocompromised friends being even more honorably stringent than I have been. This road has been unpopular and difficult. But we have done our parts to increase our own luck- to protect ourselves from the potential and well-documented cardiovascular and neurological repercussions post-Covid, particularly- as much as we can. Simultaneously, our actions protect others, too.

So some of this is manufactured luck. And Covid is all around us currently, with hardly any societal mitigations in effect in the U.S. My “luck” may run out with Covid exposure at the grocery store this winter, for example. There is so much we still do not know regarding long-term effects, genetic protective factors, and so forth. I don’t love those odds, so I increase my luck where I can. Yet privilege informs so much of this luck: education, health literacy, connections for navigating, work environment, socioeconomics, social supports, and so on.

For many answering the nurse’s question with a “yes” as to prior Covid infections, their luck was undermined by our society’s refusal to do the right things, consistently. We haven’t conceded the awakening about clean indoor air, akin to cleansing our drinking water in the past. Like we did with solar panel energy incentives, governments should have given tax breaks to businesses investing in ventilation and air purification. Entities like major hospitals or government agencies with the financial capital to improve air quality should have done so, yesterday, setting a good example for all. We should use good quality masks indoors not just to protect ourselves, but to support the community at large, as we never know how Covid will strike each person and we are all ultimately at risk.

As one nerdy healthcare advocate writing this blog from her couch, it is admittedly easy to critique policy decisions which affect us all. Yet, we deserve better and it is indeed attainable, at least in America. Japan and New Zealand’s strong leadership, science-informed decision making, and communal buy-in to public health translated to far better outcomes, and far less loss, than we have endured.

Luck.

Having lived with type 1 diabetes for over thirty years, with the predominant theory being that viral illness often contributes to T1D onset, it’s difficult to look around at our packed indoor sports arenas and bars and not feel a sense of impending doom. We won’t know what we are losing health- and quality of life-wise until it’s gone.

Do we really want our futures to be based on luck on behalf of ourselves, or imposed on others less fortunate?

One moment in time. One exposure. That’s all it takes.

Luck.

Advertisement

8.

This blog recently notched its eighth anniversary. Woah! As time elapses, my anniversary posts usually cover the same theme: I am certainly not as into blogging as I once was, but I can’t seem to let go entirely, either. This year is no exception. Please know that although I may not be as vocal here, I do try to keep up with what our community is doing and I’m always rooting for us.

I’m not the same person who started out here, and although the growing process has been ugly and painful, I’m more firmly in a better place now. Some friends in advocacy didn’t stick around to see this version of me, and I can’t say I completely blame them. (Albeit we all deserve support through the good and bad times). This road has been long and lonely and grueling. But I suppose this explains part of my reluctance towards blogging as frequently as I once was: I’m simply busy doing other things now. Still, a part of my heart will always be here, and my advocacy will never waver. Thanks for being along for the ride, for whichever part or for however long each of you has visited.

Stability

Content warning: discussions of A1c, blood sugar, and diabetes management

Stability is often an elusive word. Lol… But in this case, I’ll take it when it comes to diabetes.

Since starting on Tandem’s T:slim pump four months ago, my A1c has dropped 2.6 points. I’ve blogged previously that my diabetes team and I chose to run the pump in exercise mode 24/7 to create a blood sugar buffer which would gradually lower A1c for safety reasons. Still, a 2.6 point drop feels a bit aggressive to me. One can only outsmart the algorithms of these fancy pumps so much, which I ultimately believe is a good thing for someone like me. Being forced to take a leap of faith and trust, to relinquish some control, has immensely helped my health. We are going to try to keep the A1c drop at a slow pace for awhile by continuing exercise mode 24/7 for now. Again, there is no perfect answer to this diabetes conundrum and this is our best shot.

I was curious what pump effects may be shown at my diabetes eye appointment, but thankfully the doctor felt that all looked good and that ultimately the goal of feeling better with a more in-range A1c, achieved gradually through exercise mode, is the ideal course of action in protecting my body for the long term. I share this part of my diabetes story openly here because globally, these concepts are not on the radar as often as I have encountered them based on my geographic area, alone. Decreasing A1c gradually may seem counterintuitive, but such is almost everything with diabetes.

“Stability,” indeed.

Frozen

It happened gradually and then all at once- the searing shoulder pain which lasted about 30 seconds if I reached too far under the table for a dropped pen, or abruptly braced for impact when my lunchbox fell off the top of the refrigerator, aiming at my head. Seemingly overnight, my chorus became, Oww oww oww oww oww, my f*cking shoulder!, oww oww oww.

After months of pain not resolving by my own methods of *trying to ignore the issue because I’m way too busy for anything else right now*, and then some more waiting for an appointment with an orthopedic specialist, the probable diagnosis, which I’d already suspected, was in: I likely have adhesive capsulitis in my dominant upper extremity, often referred to as “frozen shoulder”. Frozen shoulder is fairly common in people with diabetes, which is why I eventually took the prospect seriously. The doctor suspects that a slight, unnoticeable strain injury from the past has escalated with a vengeance, and did not immediately jump to blaming diabetes.

I must admit part of me is thankful for the specialist’s hypothesis, although I hate that my internal blame compass would even go there if diabetes were, or is, involved. I’ve lived with diabetes for over 30 years, using blunt, less-than-ideal instruments to manage an insidious condition which never takes a moment off. Of course, after the nonstop wear and tear on the body, things happen. I would never blame anyone with diabetes for any related health condition which arises; so much is out of our genetic control and handling diabetes all day, every day is an enormous, frustrating responsibility. Society is so quick to stigmatize “diabetes complications” and yet does not prescribe “complications” to most other health conditions, etc. If this were a complication of diabetes, I’d simply have to deal with it.

I suppose my larger relief with the doctor’s theory pointing away from diabetes is that I have zero patience left for the mansplaining of my own health, often by members of our own community. I celebrate empathy if you’ve gone through a similar ordeal. But frankly, I don’t want to hear anyone else’s 2 cents about my health unless I ask. I trust this doctor’s expertise and our gameplan, and really all that matters is finding a better way. I’m uncomfortable sharing this personal news here not so much because of the gravity of the situation, rather because I deserve to feel whatever I feel about it without others’ biases. Yet my transparency as an advocate, my willingness to tell it like it is for the sake of improving quality of life beyond my own, takes precedence in choosing to share here.

Regardless of the root cause of my shoulder woes, which we may never know, the intense pain is indescribable and I simply want long-term relief. I am grateful that, for now at least, the condition involves dull throbbing especially overnight and unbearable burning only for about 1 minute if I turn my arm the wrong way too swiftly. Predicting those movements is tough, though. For example, I was drinking from a glass on the couch and tried to regain my grasp as it slipped and spilled liquid everywhere. That unanticipated motion sent my pain into orbit.

For now per the doctor’s instructions, I will take anti-inflammatories and begin physical therapy exercises- easier said than done with long PT wait lists and trying to fit this into my already-overwhelming work / personal healthcare appointment schedule. I’m admittedly not a happy camper due to the time commitment involved here. But whether I like it or not, I need to be dedicated to doing all that I can to yield improvements for future quality of life. The speed with which the pain has been exacerbated over the past few months is alarming, and I hope with treatment that this will be the worst of it. Steroid injections are an option we’d like to avoid for now given the blood sugar hell involved with such treatments.

Like everything I’ve endured with my health over time, this is just another item to add to the overflowing plate of navigating healthcare survival. Pass the coffee.

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.