healthcare

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!

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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.

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.

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.

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.

April as a List

I find us at the conclusion of yet another month, and perhaps my hopes to get back into blogging more frequently have lapsed or feel too self-centered, as evidenced by this last minute post for April.  The hectic pace of work, life, healthcare appointments, advocacy, and, a pandemic!!!, have certainly taken up my time lately.  But I do miss this space, and connecting with you regularly. I hope that you are staying well during all of the chaos in the world right now.

My main superficial, positive takeaways from self-imposed quarantine:

  • There are never enough books to read! But reading voraciously again is a nice perk.
  • The show, Power, on Starz is totally binge-worthy.
  • Reconnecting with friends and family via phone calls or emails
  • Long, quiet walks

 

Superficial Cons:

  • I understand the need for telehealth, but it is just not my thing.  I can’t wait to get back to in-person care once it is safe to do so.
  • Iced coffee at the drive-thru was a bigger part of my life than I realized!
  • Too much pressure to Zoom!

 

To be continued in the future, as health/safety/time permit:

  • Much-needed vacation with friends this summer / fall
  • Perhaps more blog appearances
  • Coffee dates!

 

How about you?  Stay well!

 

 

 

 

5

Very Light, No Sugar recently celebrated its fifth blogoversary.  I am forever grateful for the people in 109 countries(!!!) around the globe who have visited here.

A lot has changed since I ventured out into the healthcare advocacy realm 5 years ago.  Having been diagnosed with type 1 diabetes (T1D) just before my third birthday, advocating has always been in my blood, literally and figuratively.  I still believe that #weneedacure.  And I still believe that all people with diabetes, or any other health condition, deserve dignity through accessible, affordable, high-quality care.

I marked my fifth blog anniversary by waking up in a stupor, thanks to skunked, expired insulin contributing to high ketones.  “I’m so over all of this,” I lamented through a series of tweet-and-deletes.  The irony was not lost on me.  Diabetes waxes and wanes and manifests over a spectrum.  At the heart of it all is a human being simply wanting to improve quality of life (QoL), to be in the green on those numbers charts, in the “doing well” category.

If I am being totally honest, although I look back and cringe at some of the early, corny blog posts, I am jealous of that former author, that version of me.  She had so much innocent hope in the future, in the good capabilities of healthcare.  Perhaps time in the trenches has jaded me over time.  I have seen the good, the bad, and the ugly in healthcare advocacy.   I still believe in the good.  But I have removed my privilege blinders to be more realistic about the various barriers to care.

Personally, I have survived a lot that I never anticipated, and I did so very publicly.  Sometimes I wish I could crawl back under my rock, and do the whole survival thing quietly and humbly.  But there is another part of me that is committed to keeping it real, to voicing the raw truths even when it is painful to do so.

There are so many good eggs in diabetes-land, many of whom I have enjoyed collaborating with or sharing a coffee / beer in person at various events.  Others are Twitter friends, known by their creative @ handles.

The longer I am a piece of this diabetes online community fabric, though, the more I notice the glaring discrepancies between the Haves and the Have Nots.  I acknowledge my own great privilege due to graduate education and job, while still recognizing that diabetes is pretty damn difficult no matter what.  I cannot fully understand the plight of those with less than me, nor do I purport that I represent all of them.  But, I do have legitimate concerns for our future.

How can we help The Whole in diabetes if we do not lift up all voices?  We celebrate amazing tech innovation for some, while others die painfully of ketoacidosis, their breathing labored, because insulin is not readily available through no fault of their own.  I look at all of this and wonder where I fit.  Have I assumed the role I was supposed to play?  Have my interests moved on to mental health?  Do my interests need to be separate and distinct? (Heck no).

In the words of my favorite poet, Andrea Gibson, “It hurts to become.”  I have done a lot of becoming over these past 5 years.  And, as a community, we all have become, too.  We have more to do.  More voices to hear.  More time to listen.  More lives to save.

I do not know where the next 5 years will lead.  Lately, I have been focusing on the here and now.

Thank you for letting me be here, with you, riding the wave while it lasts.

Much love, always.

Ally

 

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Remembering

BetesOnTap selfieDanielle, Alex, and Me Boston 2018

The healthcare advocacy world swiftly teaches you about vulnerability.  By virtue of showing up, you innately care.  You meet wonderful, kindhearted people- those friends you just know will go straight to heaven.  And sometimes they are gone too soon, and we feel that raw emotion of loss, here, on this earth.  We are suddenly more thankful that we paused for a moment during the fun to take a group selfie, to remember that day.

Alex and Kim, you are both on my mind and in my prayers a lot this week.  May we learn to be as graciously brave and good as you.