A Historic Moment for Advocacy

I’m usually skeptical of good diabetes news (still waiting on that cure, by the way), but Lilly’s recent announcement on reducing insulin prices is a mind-boggling moment in patient advocacy. Surely, there is still much work to be done for truly equitable insulin access to become a reality for all. Yet, Lilly’s move (later followed by Novo Nordisk and Sanofi) is a step most of us never foresaw without federal regulation forcing pharmaceutical companies’ hands. (Without regulation, notably Pharma companies could raise list prices if they so choose). Understandably, all of this recent news doesn’t bring back what and who our community has lost along the way to this historic moment. As we move forward, we should always remember their stories and how our community got to the here and now.

From an advocacy lens, this moment speaks volumes as to the collective power of online health communities. Too often patients are dismissed by conscious and unconscious biases in healthcare. Yet I am inspired by so many in our community who have never backed down on demanding a better world for all people with diabetes. Their persistence is why insulin is in the spotlight, mentioned often in politics for better or for worse. They undoubtedly moved the dial here, and the world is better because of their relentless determination. Thank you to those of you who led the way. This one goes down in my forever record books of why advocacy is worth it.


MRI Woes

The abridged version:

I recently underwent an MRI (magnetic resonance imaging) due to suspected adhesive capsulitis (“frozen shoulder”). After months of physical therapy (PT), the pain has infinitely improved yet my range of motion is still significantly limited. We needed more answers from the MRI to inform next steps.

Because of other advocates’ warnings, I was concerned about blood sugar issues while inside the MRI machine. After voicing this to the imaging center, they explained that I would have a “panic button” of sorts- a squishy balloon contraption- to squeeze to alert the techs that I needed assistance.

Diabetes technology such as insulin pumps and continuous glucose monitors (CGMs) should not be anywhere near MRI nor x-ray machines. Being detached from the pump for a few hours of this process was doable in the moment but later provided brutal. I entirely removed my infusion set because I use needle sites and that steel should not be present during an MRI. Generally, my blood sugar runs super high for hours post-site change no matter what I do. Coupled with lack of insulin for hours at the MRI and an eventual new infusion set, it was a rough night and I had little energy due to flushing out ketones for hours. I am grateful the MRI was booked on a Friday afternoon, as the recovery proved more than I’d anticipated due to diabetes annoyances.

The clinic’s staff was very kind, informative, and comforting as inevitable bumps in the road arose. Upon injection with the arthrogram dye, I experienced almost immediate vasovagal syncope (near-fainting, seeing spots, feeling warm). This was an automatic body response and not so much because of pain, although the sensation of the dye coursing through my arm was bizarre. I laid down and drank water, and thankfully recovered within a few minutes. I checked my blood sugar before entering the MRI machine (240 mg/dL).

The machine itself was open beyond where my head lay, and my legs were sticking out of the bottom of the machine. I didn’t find the claustrophobia effect to be too overwhelming, although the machine is tight quarters and obnoxiously loud. I was provided hearing protection and listened to today’s pop music station. As corny as it sounds, the tech squeezing my leg as if to say, “You got this!” as they rolled me into the machine helped motivate me to get through it. These little supportive moments in healthcare can truly make or break difficult situations.

The first half hour of the MRI was fine. I stayed completely still with my arm by my side. The latter portion was admittedly far more difficult. We had to position my injured arm above my head with weighted pillows of sorts to get more detailed images. Considering this arm is “frozen” in movement, holding it still in that position left me shaking and needing to stretch. I tried to stick it out for as many pop songs as I could until, thank God, it was all finally over. My blood glucose was 160 mg/dL after being detached from the pump for the MRI, an interesting pain + adrenaline combination but I will take the surprising BG result.

After a meandering process of trying to access my results, I finally picked them up this week: Adhesive capsulitis, indeed.

I have absolutely zero time to deal with this, as I am working fulltime and in an intensive graduate program at the moment, coupled with multiple family and friend weddings this year. But my next steps will likely be trying to find time that doesn’t exist to meet with another specialist for a second opinion. I want to avoid steroid injections at all costs given the diabetes element and am leaning towards manipulation of the joint under anesthesia with intensive PT afterwards.

All in all, the timing could not be worse. But at least we have thorough answers now. That said, I hope to never endure an MRI again!


This month marked 32 years of living with type 1 diabetes for me. Honestly, it was just another day at this point. The week was emotional for different reasons, and diabetes was in the background. What a contrast to that time over three decades ago, in which I was in DKA and fighting to survive, hooked up to beeping heart monitors and IV drips.

I’m grateful this year for Tandem’s T:slim pump, particularly. This device is the reason I get some reprieve from the constant managerial aspects of T1D. It is why on my thirty-second diaversary, diabetes did not have the spotlight this year. How I wish we’d known all that time ago what we know now- but that we would have understood that access has never been a level playing field, too.

Until there is equitable access to diabetes supplies and treatments, our work remains after all this time.

To 32 more…

Christmas Card 2022

Wishing you a (belated) Merry Christmas, happy holidays, and a fresh start in 2023!

May we all be as chill as the mouse pictured here after some relaxation time this holiday season!

*Alt text: Large, Christmas-themed stuffed animal mouse resting on a bed.

I am making an effort to include alternate text descriptions for those with visual impairments. I am not always perfect at remembering, but please know that I am trying in good faith to be better about this. Thanks for the advocacy from many in the diabetes community regarding the inclusivity of alt text.


“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.


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.


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.



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.


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.


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!)