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

T1D in the COVID-19 Era

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

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

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

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

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

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

Extreme thirst

Frequent urination

Fruity breath / odor

Blurry vision

Significant weight loss

Ketones may present a heartburn-like sensation.

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

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

Patient Advocacy in a COVID-19 World

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

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

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

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

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

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

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

2) Meet people where they’re at.

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

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

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

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

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

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

On healthcare conference hashtags

This is not to say

‘There aren’t good eggs’

who care about people with diabetes

like you

like me

who recognize the humanity in us all

who dry the tears and wipe the blood

away

It is to say that ‘we’

the hashtag statistics

the numbers

the time in range

whatever that is

the semantics we are spoonfed

while poked and prodded relentlessly

CGM needles piercing the abdomen

lining the pockets of the yacht owners

‘This is us’

so-called specimens under the microscope

We

are still worthy

people