The Role of Privilege in Advocacy - Reflections from the Indianapolis T1International Vigil

Monday morning I sit at my kitchen table. The reservoir indicator on my insulin pump blinks "LOW," warning me to change my site. As I go through the motions of changing my pod, I hesitate. I've drawn up the last of my vial of insulin, and I need more. I open the clean, white refrigerator in my parents' kitchen and pull out another bottle. I flick off the plastic cap and draw more out. The weight of my privilege settles over me like a heavy blanket.

I've just returned from Indianapolis, where T1International held their 3rd annual vigil and protest outside of Eli Lilly Headquarters. While there I had the honor of meeting families who have lost their loved ones due to insulin rationing. The majority of these people were parents who have lost their children - many of them ages 18-26, a now-dangerous age for people living with T1D in the United States.

I arrived to the hotel where most of the T1International Chapter Leaders and families were staying anxious and excited. I had never participated in a protest before, and this was something I felt incredibly passionate about. At the same time, I carried around a feeling of guilt. Guilt that I have a job I love, that also happens to have great health insurance that I am able to afford, with manageable co-pays for my diabetes supplies. Surrounded by families who had lost their loved ones to price-gouging and a greed-fueled healthcare system, it struck me how unfair this all was.

What gives some people the right to life over others? Nothing.

At the vigil, we heard families tell their stories. Stories of how their loved ones were found dead, and how they had wasted away from the lack of medicine that they needed to live. It was difficult to hear. As a privileged type 1 diabetic, it is often easy to forget how closely death lurks behind our shoulders. As many of the signs held up at our vigil shared, this could happen to any of us. We are all one bad day away from falling into a dangerous place.

Eli Lilly is one of three powerhouse insulin manufacturers, along with Novo Nordisk and Sanofi. They are often referred to as "The Big Three," as they control almost all of the insulin market worldwide. Insurance companies, pharmacy benefit managers (PBMs) and the American healthcare system play a huge role in this crisis as well. Research has shown that roughly 1 in 4 people with type 1 diabetes in the USA ration their insulin due to cost - a higher rate than any other high income country surveyed (T1International, 2018).

So as I sit at my kitchen table, filling my pump with the insulin that I can't live without and have so readily available, I feel a number of things. I feel relieved. I feel angry. I feel mystified.

One thing I have learned about privilege is that it must be acknowledged, but it goes further than that. Acknowledgement is no good if you then spend your time wallowing, feeling guilty. It's what you do with that privilege that matters. I have my health, and I have a voice. These are privileges that I will use on behalf of those who lack that privilege.

On Display

People live with diabetes in many different ways.

Some of us are unashamed of our medical devices, and flaunt them every chance we get. Others are more private; keeping devices hidden as much as possible, or even choosing not to use certain devices in order to avoid making diabetes more visible. Most of us fall somewhere in the middle.

The other day I was speaking with my mom about letting my devices show. During our talk I realized how multi-faceted the decision is. I explained to her that I'm not embarrassed for my devices to show. I don't particularly care what other people think. But some days, it's 80 degrees and I just want to run to the store in my tank top without anyone speaking to me.

This seems fair, right? Sometimes we want to be left alone, especially if we're shy or introverted. And even if we're not, sometimes we don't always want to get into a discussion with a stranger about such a personal part of our lives. That's what's unique about diabetes. It is so insidious that you often don't think twice about it, but when someone you don't know brings it up it can feel uncomfortable.

Take going to the beach. If you have a pump or a CGM, it's highly likely that one of these will be on display when you don a bathing suit. And some days, I just want to tan and go swimming. I don't want to talk about diabetes and explain why I'm having that snack. You can be comfortable in your skin, but still not want to be approached. You can be proud of your medical devices, but still want others to respect your privacy.

You can be a loud advocate, but have your days that you just want to just be.

Which begs the question - is this decision wholly on us? I don't think it is. I think that when we decide to let our medical devices show, we're hopeful that the general population will decide to be tactful. That they are kind in their questioning, if they feel the need to question, and that they're receptive to what we have to say.

How To Attend a Meet-up as an Introvert

Contrary to popular belief, introverts don't relish spending the majority of their time in the dim light of their bedroom, hissing at fellow human beings should they dare to intrude.

....Much like extroverts don't enjoy spending every waking minute of their lives at raging parties. This is a generalization about these two often referred-to categories of people that we simply tend to make. In reality, what differentiates an introvert from an extrovert is how they re-charge their batteries. So, as an introvert you may enjoy spending time with others, but in smaller doses. You feel re-energized after cozying up with a good book after a social event. On the other hand, an extrovert will seek out others to socialize with to re-charge. Susan Cain does a much more in-depth exploration of this in her book Quiet: The Power of Introverts in a World That Can't Stop Talking.

In today's world, much of our support from other T1Ds comes from online, often from people we've never met. There we are able to connect with others, and often organize monthly or weekly in-person meet-ups - think support groups, but less formal and with more quality food involved.

I remember my first meet-up. I attended alone, and it was in Manhattan. I was nervous. I anticipated this; I'm an introvert myself. I also anticipated that by the middle of the meet-up and then walking home afterwards, I would feel happy. Reflecting on the night, I would smile and enthusiastically tell my family about the people I met. So I'm here to tell you that yes, you can attend a meet-up as an introvert. Here are my tips:

Rest Up

Remember that whole thing about what gives you energy? Even though the meet-up can be a fun and pleasant experience, for an introvert it can still be draining! So you'll want to show up with a fully charged battery. That means spending the day doing what brings you peace - reading, exercising, taking a nap, etc.

Do Your Research

Fear of the unknown makes everything worse. Know where you're going, how you're getting there, and how you're getting home. Most meet-ups will post their location and information about the hosts, so you can get a feel for the vibe with a little research on your end.

Don't Feel Bad About Leaving at a Reasonable Hour

Attending a nighttime meetup but not a night owl? That's fine! Go, enjoy yourself, and leave when you feel it's time. Don't beat yourself up if some people are going out for drinks afterwards and you don't have the energy to join. You still took a huge step - you put yourself out of your comfort zone. Celebrate what you have done, instead of comparing yourself to what others have done.

Find a Buddy

If you're still feeling nervous, make a plan to connect with one person. Whether it's online before the event, or when you arrive. There's power in numbers. And the odds are, the more comfortable you get and the more you settle in, the better you'll feel about branching out.

What exactly IS self care?

Living in the age of social media means that we're exposed to many fleeting trends, buzz words and health crazes - some of them more legit than others. One of the terms you've probably heard by now is "self-care." Maybe you've shrugged this off as another wellness fad, or maybe (more commonly) you've been thinking sounds great, but who has time for that? 

More than just a fad

Self-care is a real thing, guys. My primary exposure to this phenomenon has been through the world of social work and diabetes. But whether you're a social working diabetic or not, you still need self-care. Everyone needs self-care. Yes, even you Mom.

Self-care is particularly important for those who are prone to burnout - caregivers, people with chronic illness, mental health/medical providers, and first responders. Ironically enough, these tend to be the people who have the least amount of time for it. But fear not. You may surprised at how simple implementing self-care can be.

How do I self care?

First of all, check in with your priorities. Where are you on the list? After your spouse, kids, job, diabetes? The lower you are on your own priority list, the more urgent your need for self-care is.

Second, self-care doesn't have to be a huge undertaking. It doesn't have to be a lifestyle change, or a big interruption to your life. Self-care can take as little as 5 minutes of your day. Some tiny self-care examples:

• List (on paper or in your head) 5 things you're grateful for
• Watch a funny video
• Pet an animal
• Write in a journal before bed
• Stretch

See? Not so bad. Self-care is basically anything non-harmful to you or anyone else that releases those feel-good endorphins, or lessens our load of tension. For people with diabetes, it could mean taking a break from our CGM. It could be taking a break from Instagram, or unfollowing someone whose posts you keep comparing your BGs to.

It may seem like a silly indulgence, but remember - if you're not taking care of you, you eventually won't be able to take care of anyone or anything else.

Staying Sane with Your CGM

You may be reading the title of this blog and thinking it's contradictory.

I need my CGM to stay sane, you mumble to yourself. What is this girl getting on about?

First of all, if you're on a CGM and don't get obsessive with your data, kudos. If you don't let the steady stream of numbers wear on your self-perception and sanity, I'm impressed. I'm also skeptical. Because how could we not become obsessive? The data is always there. At any given moment, we can see what's going on with our blood sugar trends and levels. As someone who's lived for over 20 years without this insight, I must say it's like finally being given the gift of sight.

So if you think you're not over-dependent on your CGM, ask yourself these questions just to check where you're at:

• Can you eat a meal/go to the bathroom/go on a date without having your phone or your receiver by your side?
• Do you catch yourself having a knee-jerk reaction to up or down arrows, and then going high or low due to over-correcting?
• Do you have a significant increase in worry during the warm-up period when you start a new sensor and you don't have access to continuous readings?

I can tell you personally that since starting CGM use, at least one of these has always been a "yes" for me. And that's okay - the CGM is a great tool and we should use the data. But sometimes the constant checking and over-correcting can do more harm than good.

So, to keep myself sane, these are some hacks I've implemented:

• Turn off the "Quick Glance" feature. Quick glance can be a blessing and a curse. It's super helpful for things like work and driving. However, during downtime it's easy to tap your phone awake every 30 seconds to check the BG that's fixed to your screen. I take little vacations from quick glance and usually notice a healthy decrease in how often I check my phone. 

• Use your receiver at night. By now you've probably heard about the impact technology can have on restful sleep. If not, here's the quick & dirty: the closer to bedtime your screen time is, the more interference in getting good Zs. Most experts say to power down an hour before bed. So what I've started doing is powering on that little receiver that many of us have long forgotten, and keeping it on my bedside table. This way I can check my number if needed without getting roped in by Facebook notifications and text messages.

• Set parameters for yourself. Significant change can often come from small steps, if you follow them faithfully and make room for them to become habit. Setting firm, specific rules for yourself can be helpful. For example, "checking my phone less" is too vague; whereas "checking my phone every 1 mile during my run (thanks John from Type One Run Podcast for this tip)" will likely yield more success.

When I'm feeling particularly frazzled by my sugars and staring at the little dots on my Dexcom graph, waiting impatiently for the next one to appear, I remind myself this: there were not always CGMs. There was a time (a long time) where we ate, tested, gave insulin, and let Jesus take the wheel. We tested again when we were symptomatic or eating again. It's possible to survive without the CGM. We can stand to not know our blood sugars every 5 minutes. This re-framing and self-talk helps me work myself out of a data frenzy. Use the CGM tool as a shield, not a sword that you keep falling on.

Back to my Roots

I grew up at summer camp.

More specifically, at diabetes camp.

So when I officially registered for Beyond Type 1 x Connected in Motion's 2019 Maine Slipstream weekend, I was more than a little excited. I mean, this was the stuff of (my) life. Camp is in my blood. And now to go back as an adult, doing adult things (AKA drinking wine, higher rope courses, etc.)? I was extremely privileged to have this opportunity.

Maine did not disappoint. Seven hours and seven states north, my diabuddies and I pulled off the interstate and into the quaint town of Winslow. After about ten minutes, we approached a sign, almost masked by the leafy trees, that read "Camp Caribou." We had arrived. The camp was nestled at the end of a long dirt road, on the edge of large lake. It was abundant with all the camp necessities - volleyball court, waterfront, dusty wooden cabins and, of course, campers!

Over 80 adults living with type 1 diabetes, along with staff living with it as well, attended Slipstream. I felt a rush of nostalgia as we unpacked our bunks, did awkward icebreakers, and had a nighttime bonfire. It was so nice to be able to have an open and honest discussion about living with type 1. About its ups and downs, and about the responsibilities that come with being an adult with this disease. I was amazed to hear the different walks of life people came from - some had been living with type 1 for less than a year, while others had spent over 40 years with it. People came from out of town, out of state, and even out of country! I nestled into my cot that night smelling of bug spray with a smile on my face.

The next day was full of opportunities to play outside. I climbed a 50 ft wall at high ropes, did some paddle boarding, and played a spontaneous game of volleyball with my fellow campers. Throughout the day, sessions were held exploring everything from mindfulness to technology, all with a focus on type 1, and led by people living with it. 

I was lucky enough to grow up attending camp for kids with type 1. It was so nice to see other people who had never had this experience before have it for the first time. Listening to their awe about being surrounded by other people with diabetes was touching.

So what do you pack for a weekend at camp?

Bug Spray.

Seriously. You're gonna need it. Spray it outside the cabin. And even though you use it, you'll still leave with bug bites.

Layers.

Maine is COLD compared to NJ. I regret not packing a second sweatshirt. Bottom line, pack a variety of layers. And always pack extra underwear.

Warm Pajamas.

No matter where you are, in the woods it's cold in the morning and at night. Grab some pajama pants and fuzzy socks. And an extra blanket.

An Extra Pair of Shoes.

Ya know, just in case you get thrown in the lake. Or fall in.

Another angry blog post about insurance

...Because what else is new, right?

But seriously, what I want to vent about is insurance deciding what is or isn't medically necessary. Let's break this down: 

You go to your physician, who attended upwards of 8 years of schooling to become a MD. They evaluate you, hopefully take your input as a patient, form a medical opinion and a plan of care, write a prescription or two and send you on your way. You go to your pharmacy to pickup your medication, only to find that your insurance company has denied coverage of this prescription. They feel it is not medically necessary, or they have a "preferred alternative" that they do cover.

This is something we've unfortunately all grown used to. But let's just pause a moment. And let that sink in.

First of all, preferred by who? Not by me, the person who's going to be ingesting/injecting/applying the medication. Not by my doctor, who prescribed medication in the first place. But I mean, what value are our measly preferences in this situation, right?

Second of all, our insurance company is determining what our medical needs are. So what, then, is the point of seeing a physician in the first place? Why not just go directly to the insurance company and seek their medical opinion? Oh, that's right. Because they're not physicians.

To play devil's advocate, doctors are employed by insurance companies to conduct clinical reviews of prescriptions. However, are these doctors the most appropriate people to be doing this review? In short, no. When my Fiasp was up for review to determine what level of coverage it would receive, the review was conducted by a PhD. No shade to PhD's, but if someone's reviewing my insulin needs, I think it should be, maybe, I don't know, an endocrinologist? Perhaps my endocrinologist? One who isn't employed by a company that profits from denying coverage of the medication I'm seeking? I mean, we are literally asking people to make a determination that will either harm their own company, or harm us. And they've never met us. Which way are they more likely to go? Does conflict of interest not play a role here?

It's a very backwards system, to say the least. We go to doctors to get appropriate care. But then we're met with roadblocks to actually receive that care. For people with chronic illness, dealing with this for a lifetime is draining and aggravating. We should explore a system that makes it easier for people to live their best, most healthy lifestyle. An ounce of prevention is worth a pound of cure. If we keep people healthy, we avoid future hospitalizations and prolonged illnesses. And in turn, avoid future expenses our insurance will have to cover. So what is the end game for them? Are they just stuck in that phase of childhood development in which they have no ability to engage in delayed gratification?

End rant.

(For now).

Community Versus Identity

The other night I was snuggled up at home, catching up on the latest episode of The Good Doctor. I was drawn in to a particular sub-plot of the episode. One of the main characters, who is receiving chemo, finds himself being pestered by his neighbor in the treatment room to join their cancer support group. Long story short, the character resists for the whole episode, arguing that he doesn't want cancer to define his life, it's not who he is, he doesn't need a support group, all that jazz. In the end, he comes around, and joins his chemo neighbors for a game of cards. 

Throughout the course of this, I couldn't help but think about how many times I've heard this dialogue before - whether it's about diabetes or any other chronic illness. People don't want to be defined by their condition (understandably so). Because of this, it's common for people to push away when approached with support groups or communities for people who share their diagnoses. We want to be more than our diagnoses, so we don't want to over-identify with it.

But here's the thing - there's a difference between identity and community. Belonging to a community of type 1 diabetics doesn't mean that you yourself are only diabetes and nothing else. Your identity is still yours. Sure, diabetes and the community are a part of your identity, but they are not the whole thing.

We can't always change what we're living with. We can't make diabetes go away. So why not find solace in the fact that there are others out there who share our struggle? You may find that they don't like to over-identify with their disease either. You may not even talk about diabetes when you're together. But having that support system there undoubtedly inserts a positive aspect into living with a disease that you cannot change.

Where is the love?

Healthcare has been a hot button issue lately here in the states. Of course for those of us who live with a chronic illness, it has always been an issue. But with the 2016 election, healthcare along with many other public policies have come to the forefront of the nationwide conversation. And frankly, the conversations have been quite alarming.

There is an overwhelming population of people who believe that healthcare has to be earned. That the right to live is not an inherent right for all humans (even though our US Constitution specifically states otherwise). People feel that if you work hard, pay your dues, and play by the rules, you will A: Stay healthy, and B: Be granted great insurance coverage, God forbid anything should happen to you. This logic is flawed. Chronic and/or acute health issues can happen to anyone, at anytime, for a variety of reasons. As a species, humans don't like to believe this. It creates what's called "cognitive dissonance," which is when we are presented with a reality that doesn't match up with what we've always believed. It therefore causes dissonance, or disruption, so we do everything in our power to ignore the reality and continue on with our faulty beliefs. We cannot reconcile reality with our wishes because it causes discomfort.

Most people grow up hoping or believing that they will have good health. This is normal - it's a positive outlook on life. However, as we grow older we tend to experience certain realities - maybe we're diagnosed with type 1 diabetes, someone we love is in an accident, our parent gets laid off and we almost lose our insurance - and we are able to shift our beliefs accordingly to read more like this: things may not always be easy. Things could happen to us and our family. But for some people, this adjustment doesn't happen. They continue to believe that bad things come to those who deserve it and that healthcare should be earned.

So is the issue that people are inherently bad and have complete disregard for others? I hope not. No, what I think is happening in the majority of cases is that people are simply rigid in their beliefs due to concerns about their own self-preservation. And this needs to change. We need to challenge our beliefs because they are flawed. Yes, it is a frightening reality to accept - that we could be struck with an illness or hit by a car at any time. But we are doing more harm than good by holding on to the flawed belief that we are in total and complete control of our health or our circumstances. It is not reality.

The reality is, every human has an inherent right to live. And for some humans, what they need to live - and live well - is a bit more extensive than what others need. So I challenge you all - what belief do you cling to that begrudges others their inherent rights? How can you start to chip away at that belief and re-frame it?

Using Anger as a Tool - The Global Insulin Crisis

Being a social worker means I'm rarely surprised by anything. We are often witness to every kind of  bizarre and disturbing occurrence out there. We work in the medical field and see people struggle with a complicated healthcare system while trying to care for themselves or their children. But every news story that blasts through the screen about another diabetic dying from insulin rationing hits me like a punch in the gut.

Insulin prices have been slowly climbing over the past decade. It's a reality that seems to have been kept under wraps - except, of course, from the patients and families who have been struggling in silence each year their copay goes up. As someone who's been privileged enough to not have this issue constantly weighing on me, I could easily turn a blind eye to it. Mutter "yeah, that's a shame," and go about my everyday life. I'll be frank - this path is tempting. This is a beast  of an issue that has numerous parties involved, and differs from nation to nation. In a recent New York Times article regarding insulin prices, Danielle Ofri wrote, "It's hard to know where to direct my rage." And it is. It's overwhelming. Where do we begin? The only answer I can formulate is this: we start with raising our voices. And this has already started: with numerous articles like Ofri's, protest trips to Mexico to exhibit pricing differences, TV news features, and type 1 advocates blasting pharmaceutical companies on social media. Now that the fire is catching, we have no choice but to roll with it.

To be clear, insulin prices are an issue everywhere - not just in the USA. While insulin in Mexico may be affordable for us, it is not the case for most residents of the country. Insulin prices looked at as a percentage of income paints a better picture of the bleak reality. Aside from countries like Canada and England who have universal healthcare, insulin prices are unmanageable for most populations. The cost of living with diabetes takes up the bulk of individuals' or families' income, leaving people scrambling for rent, food, and other necessities.

Info-graphic created by T1International

While coming up with the money is the initial struggle for most, an issue that is specific to the US is the ability to then get your hands on insulin. You need a prescription. You need that prescription submitted. Maybe it gets denied. Then it needs pre-authorization. Then it gets approved, but you have a bigger co-pay than expected. Then you have to download a co-pay card (if you qualify). And then you can pick up your insulin. This process can take days at best, weeks at worst. And contrary to what many people may think, not everyone has the time to be battling on the phone with insurance and refereeing between the doctor, insurance, pharmacy and pharmacy benefit managers (PBM). We do have lives outside of diabetes.

This issue isn't specific to insulin, either. The price of test strips are exorbitant. They are considered a luxury in many 3rd world countries. Even here, some insurance companies (mine included) only cover enough strips for 3 tests a day. To get coverage for more, a letter of medical necessity is needed. In what world does someone with type 1 only need to test 3 times  a day? It's clear that insurance regulations don't seem to be based on diabetes care best practices recommended by physicians.

As I said, it's a beast of an issue. And it angers me. A lot. Instead of sitting on that anger or turning a blind eye, I decided to get involved. Becoming an advocate for T1International is step one for me. T1International is a non-profit that takes no donations from pharma companies and advocates for people all over the world to have access to the medications and education they need.

Enough of suffering through this issue in silence. We're demanding change. We're not waiting. We want #insulin4all, and we want steps to be taken towards it starting now. If you want to get involved, check out T1International, search the hashtag #insulin4all on social media, and check out what other diabadasses have been doing below.

• Libby Russell at I Have the Sugars is selling statement tees to benefit T1International.
• Robin Cressman raises her voice and led a group of type 1s across the border to purchase insulin in Mexico to protest accessibility and pricing issues. 

The Power of Words

"Words are, in my not-so-humble opinion, our most inexhaustible source of magic." - Albus Dumbledore. 

Sticker from Pimp My Diabetes

There has always been conversation in the chronic illness community about language - whether to say "diabetic/asthmatic/etc." versus "person with diabetes/asthma/etc." Some people don't like being on the receiving end of a label, while others strongly identify with one, and others still have no preference. I don't believe there is one simple answer as to which is best. I believe it's best to explore with the individual how they wish to be identified when referring to their diabetes (or any other chronic illness). It's also important to remember that that person is a person, whether they are comfortable with being called by their illness or not. They may be comfortable with you calling them a diabetic, but don't forget - that's not all they are.

So many nuances exist in communication. If someone casually asks "you're diabetic?" versus a brash "you're a diabetic?", I'm likely to have different reaction. There's so many nonverbal cues - body language, tone, facial expression. No one wants to feel that someone is accusing them of something, and most people don't like to be the recipient of sad puppy eyes. The words themselves aren't the whole picture. But they're a big part of it.

Compliance vs. Adherence

I've talked before about the word compliance in the medical field and the negative connotation it can have. The word "comply" is so similar to "obey." People living with chronic illness are already stuck with a disease they didn't ask for. Admonishing them for not "obeying" to this illness will convey that you're on the illness' side, not theirs. Because of how long and how heavily the word has been used, it's gained a derogatory nature . Hearing "non-compliant" being used to describe someone feels like hearing a dirty word. It stains a person's medical record, strikes trepidation into most providers, and causes bias when assessing a person, whether you realize it or not. There have been recommendations to switch to the word "adherent," which to me makes more sense and is kinder. Asking if someone is adhering to their regimen acknowledges the patient's role in their illness, while creating a comfortable space for them to have a conversation about what their barriers are to self-care.

Control vs. Manage

Recently I was listening to Rob Howe's podcast, Diabetics Doing Things, and came across his interview with Erin Aker, founder of the Diabulimia Helpline. In her interview she talked about the word "control," and how detrimental it can be for mental health. While control is important for diabetes management, intense desire for control can manifest into different forms of anxiety. Especially when it comes to managing a chronic illness that is so difficult to control. 

While I've had my own struggles with control and fear of losing it, I've never given much consideration to the power the word itself holds and how we can shake that power. Aker talked about using the word "management" versus "control." I felt like a light bulb went off in my head. Such a simple shift - swapping out one word for another - could make such a difference. If we keep thinking about our diabetes in terms of control, we're more prone to become obsessive. Re-training our brain to use the word "manage" eases some of the pressure. It is a more benign word, from a mental health perspective. I encourage everyone in the chronic illness community to consider what Aker talked about.

What language do you prefer when it comes to your diabetes? Do you have a preference? Many people say words don't matter to them as much as the content of the conversation. Comment below and let me know your thoughts.

Making Endo Visits Suck Less

It's no secret that we all dread going to the endo. No matter how much we like our docs, there always seems to be a level of anxiety that accompanies us to the office. If nothing else, this visit is a strong reminder of the chronic illness that we are living with and managing every day. After more than 20 years of doctor visits and a handful of different endocrinologists, I've learned some ways to make these trips suck a little less.

Treat. Yo. Self.

This idea was actually inspired by my older brother. Like most normal humans, once a year he goes for blood work. He's not the most comfortable with docs and needles, so after his appointment he stops for a Snickers bar. After hearing my mom talking about this I thought, why don't I get in on that?

It doesn't have to be candy (unless you're low). It can be something a little more betes-friendly, and it doesn't have to only be before/after your endo appointment. When I go into the pharmacy to pick up my medications, I look for a little something for myself. Whether it's a mini-cactus for my office, a Justin's PB cup, or a new face mask; it makes the trip a little happier. 

After my endo appointment I'll do a little something more - stop at Starbucks or Playa Bowls, or I'll book a facial for the same day. It can be something small (or big!), but you get the general idea - do something pleasant for you.

Write out your questions.

If you're like me, you have a lot of thoughts that gather in the couple months between appointments. It's easy to let these float around in your head and then have your mind go totally blank once your butt hits the exam table. This can lead to feeling flustered and defeated after the appointment. Something I've started doing is writing down my thoughts and questions as they come, and bringing the list with me when I go to the doctor. That way, when my doc asks how things are going I actually have something productive to work on.

Stand your ground.

It's essential as a type 1 to have an endo who is willing to work with you. Someone who is on your team, not trying to act as your boss. If you have ideas - taking a pump vacation, switching insulin, trying a sensor - speak up! This is your time to advocate for yourself. Your doc may not be on board right away, but they should listen to your input and hear what you have to say. After all, you are the one living with this disease 24/7.

Bottom Line.

Medical management can be boring, at best. But mixing in little joys and treats when we can acts to improve our outlook and quality of life.

Trust & Type 1

Trust is essential in any relationship. It allows us to feel safe. It gives us permission not to worry; not to have doubt. When we have trust, we can rely on our significant other. As someone with type 1, I rely heavily on my medical supplies. But what supplies earn that trust? And how long does it take to earn it?

The glucometer.

This is the OG diabetes tech. It's what I've been using since infancy. When I was a baby, my parents used to prick my toes to test me (I was diagnosed at 13 months old). Because of this, my glucometer often feels like my lifeline. It's been there literally my entire life, giving me the data I need to treat myself. Granted, there are days that my numbers are so wacky that I stare at my meter in frustration and wonder, are you lying to me?

The meter has evolved over the years - becoming slimmer, quicker, and requiring less blood from my callused fingers. But the idea is still essentially the same. Prick the finger, get the number, react accordingly. I would say that I rely heavily on my glucometer - because I trust it.

The pump.

Coming along in my grade school years, the pump took some time to earn my trust. When it first came out, I remember writing in my diary in wonderment, marveling at the fact that I didn't have to use MDI (multiple daily injections) anymore. I remember putting my "very last syringe" in my memory box the night before my pump training. It was a huge deal for me.

Maybe because of this, I was crushed when I had a rough go of it the first time around. I struggled with highs; had one particularly traumatizing, painful, kinked catheter; and site changes for some reason terrified me. I eventually went off the pump for a year or two until my parents & I felt I was ready to try it again. I've remained a pumper since then.

But still, there are days where I feel that doubt niggling at the back of my mind. What if my pump malfunctions? What if I can't get my insulin? What if I get too much? Can I really trust this device functioning as my pancreas? Clearly, this doubt isn't significant enough to cause me to switch back to MDI, but still, it is there.

The CGM.

Thus far in my diabetic life I've had two CGM experiences - Medtronic Enlite and Freestyle Libre, the system that I currently use. I was weary of this tech at the beginning, and was adamant that I didn't want something else attached to me. I was also a high schooler, and annoyingly stubborn. As I got older, I began to grow curious. But alas, it wasn't meant to be - my insurance did not think that this (statistically proven life-improving) technology was "medically necessary." So, I went without until I enrolled in my own insurance this year.

If you follow me on Instagram or read my blog, you know that I'm in love with my little Libre. But it's a new love. It's still deepening. The trust still needs to grow. I get asked all the time, "So you don't have to prick your finger anymore?" And I wince, because I know I really don't have to as often as I do. But kicking an almost-26-year habit is hard.

To be fair to myself, there are discrepancies between the readings, and for the Libre it is recommended to check via finger stick before making treatment decisions. Still, there is room for improvement on my end. I feel the doubt trying to drown me, telling me "just make sure" or "just prick your finger, it's no big deal." I am hoping that with time, I'll develop a functional doubt:trust ratio.

Bottom line.

As human beings, we're comfortable with what we know. We are, in fact, creatures of habit. It's been my experience that people who were diagnosed at a younger age, or many years ago, are more familiar with the older tech and are more weary of relying so heavily on the new stuff. But those diagnosed during this stage of the game, where CGMs are the norm, feel much more comfortable trusting in their gadgets. A big part of this is about feeling safe. I feel safest testing my sugar the old-fashioned way, because it's what I knew for so long. 

My hope is that with time and practice, my trust will continue to deepen. My other hope is for you to know that if this is something you struggle with as well - you're not alone!

Planes, Trains & Snow Delays - Costa Rica 2018

Pura Vida.

"Pure life." It's the phrase of Costa Rica, where I spent the last 6 days. I can say with certainty that the country measures up to this saying. It was beautiful: lush with wildlife, green forest, and full of amazing views and experiences. Every day, especially those where we ventured outside the resort, felt full of life.

Me and my best friend, who I've known since babyhood, traveled together and this is the farthest south we've gone so far. The flight from Newark was about 5 hours. We stayed in the northwestern part of the county, in the province of Guanacaste. This was my first trip with my Omnipod as well. Overall, my diabetes wasn't troublesome during vacation.

What I packed.

To say I over-pack for vacation is an understatement. But hey, better safe than sorry, right? For this trip I knew I would have to change my pod twice, so I packed six pods - four more than needed, just in case any didn't work or fell off in the jungle. I packed extra batteries for my PDM. An extra pump - my old Medtronic - with two infusion sets and reservoirs to go with it if needed. A full vial of insulin, an extra glucometer, charger for my glucometer, some extra lancets, and two full bottles of test strips. Oh, and low supplies.

For my lows I packed a big baggie of gels, and two juices. I've learned recently that you can bring your juice through TSA at the airport in your carry-on. If you inform them why you're carrying it, they will swab it and let you bring it through. We didn't check any baggage, so this was super-helpful. I also have a small army of pills I take daily, so I filled up my 7-day pill case and packed all the bottles as well - that way I can show what the pills are and that they are prescribed to me, if needed. 

Lately I've been using Vial Safe to keep my insulin safe during travel. I kept my PDM, libre, and glucometer with a gel in my Clark double zip bag from Myabetic. This was my go-to bag for vacation - brought it to the beach, carried it in my backpack at the airport, and used it as a little clutch at night. I also brought the new Jay sling bag from Myabetic which I found VERY helpful during our excursions. It fit lots of stuff and is more sporty and water-resistant than the other bags, which was good because it poured during our rainforest walk. When we went zip-lining, I was able to clip it around my waist like a fanny pack. All of my extra supplies go into my zippy "All My Diabetes Shit" bag by Casualty Girl.

Keeping the shoogs in check.

Something I've learned about myself is that I run high on vacation. Whether it's the adrenaline, the high fat food my body isn't used to, the drinking, or a combo of the three, I'm not sure. What I did this time is created a "Travel" basal program with doses .2 units higher than my regular basal. It worked well with a little tinkering. After dinner I still would need a jacked up temp basal for a couple of hours. It's amazing how sensitive our bodies are to change. At home I really don't drink with dinner and we eat very healthy. Even having 1-2 drinks on vacation and eating food that was richer but that I didn't necessarily think was "high fat," my sugars would skyrocket without that extra basal.

Something else I strongly recommend is water. It's so important to stay hydrated when you're laying out in the sun, especially if you're drinking. I grabbed a water with every drink I had, and every hour or so out by the pool even if I wasn't drinking. It just makes my body feel better. 

Excursions.

As lovely as it is to lay by the water, have some cocktails and just do nothing, mixing in excursions is a must for me on vacation. I love to see the country I'm in, learn about its history and its people, and experience everything I can in the time I have.

Our first trip was to Diamante Eco Park, which has an animal sanctuary and an aerial zip-lining course. We got to see monkeys, jaguars, sloths, and toucans! I never realized how beautiful toucans are and now have developed just a tiny obsession with them.

After the animal sanctuary it was off to zip-lining over the mountains. I've zip-lined before, but this was something else. The second zip was Superman style - face first. It was high over the ocean, and we could see our resort in its entirety from above. Definitely not for the faint of heart, but an amazing experience for those who love these kinda things.

Our second trip was much longer. We took a bus to Lake Arenal, which was about a 3 hour ride. However, we had a great tour guide who taught us all about the history of the country and showed us all the sights. We had lunch in a local town where I met a little cat and fed her some of my tilapia. After lunch, we took a boat across the lake and had an amazing view of the volcano. Afterwards we stopped at another eco-park and took a walking tour through the rainforest, followed by some time at a hot springs lodge, then wrapped up the day with dinner at a beautiful hotel up in the mountains over the lake. There are tons of eco-hotels in the mountains near Lake Arenal that I would love to stay at one day. The views are amazing and you really are  surrounded by the beauty of the country.

Airport Shenanigans.

I'm a fairly light packer, so I try not to check baggage unless absolutely necessary. For this trip, I brought a mini-suitcase as a carry-on, and a big backpack for a personal item. Some airlines also allow you to carry a medical bag at no additional charge - make sure you look into this! It can be super helpful, especially if you have to check some bags.

Coming home to New Jersey, we were expecting some snow. Some snow. We were not at all expecting the hot mess that was to come.

In retrospect, we should have had some sense of foreboding when the hotel phone rang at 2:40 AM. Our shuttle ride was scheduled for 3:20 AM, but there must have been a miscommunication - the driver arrived at 2:30. We scrambled our things together and hustled down to the lobby, still half-asleep.

Things went relatively smoothly after that until we got to Houston. We had a layover there, and once we landed and had lunch we saw that our flight was pushed back an hour. Okay, not so bad. However, just as we were about to get on the plane, we were stopped. There wasn't anymore room for carry-ons. We would have to check a bag. Quickly, I crammed all my medical stuff into my backpack and forked over my little suitcase. We boarded, got comfy and waited.

And waited.

And...got delayed another hour.

Once we finally took off, everyone's nerves were a little frayed. This didn't improve when, two hours into the flight, the pilot made an announcement that Newark was totally iced out. We would be landing in Cleveland and waiting the storm out. It turned out that we would have to wait until the next morning to fly back home.

Small calamities like this are why it's so important to be over-prepared medication-wise. Also, to have everything essential on your person. We had no access to our checked bags overnight. I may not have had a toothbrush, but at least I had my insulin.

After an airport dinner with our fellow stranded souls, we made our way to a hotel airport, punch-drunk from exhaustion and missing our pets. At the end of the day though, we were happy to be safe and sound from the ravages of the storm.

Bottom Line.

Bottom line from this trip: Be prepared. Over-pack. Visit Costa Rica if you love the outdoors and love outdoor activities. And again: Over. Pack.

This is Halloween (with Type One)

It's cold outside. Colder than it was before the sun completed its journey, down below the line of mountains in the distance. There is a bite in the air, and as I take off on my run I see my breath come out in puffs.

As I get farther away from the warm glow of my house I touch my running belt compulsively, feeling for everything - gels, glucometer, pricker, test strips. It's all there. My finger tips are aching already and I haven't even made it to the lake. I feel my pace quicken.

Running in my town is different than I imagine road running in other places is - there are no 24/7 convenience stores, no stores at all actually, and I'm far more likely to see woodland creatures than other humans while on my journey. I think this increases my trepidation - I can't dash into a 7/11 and buy an apple juice if I under-pack. And as I make my way around the water in the stillness of the night, I start to wonder if anyone would see me if I went down. It's getting increasingly darker the further I go, under the hood of the trees with the woods edging up to the opposite side of the street. What animals come out at night? I can't remember.

As I approach one mile I've already decided I'm only going for two today - I'll loop around and turn back instead of completing the circle around the lake. I'm feeling the muscles in my back cramp up and thoroughly spooked by how poorly I can see. I wave my reader over my Libre sensor and am happy with the result - 146 - at first. But as I start into the second mile I feel a niggling in the pit of my stomach. Is the dark inhibiting my ability to feel my low? What about the cold?

I dig out my glucometer supplies and prick my finger as I run, a delicate skill I've learned to master. The number flashes on my meter - 76. The darkness acts as my friend then, hiding the annoyance on my face and bearing witness to the soft curses I whisper as I tear a gel open with my mouth. I toss the used test strip and methodically squeeze the gel into my mouth with my hands and teeth. When its done I cram the wrapper into my belt. I pick up speed. I'll sprint the rest of the way, I think, and this lasts about half a mile, until I feel the gel turning over in my stomach and the muscles seizing in my back. I slow my pace down again.

I feel the dark closing in on me, and I feel the urge to test again. Not until at least five minutes have passed. I reprimand myself and I keep running, fighting off thoughts of being too cold to feel my sugar dropping or of a feral raccoon surprising me in the darkness.

Finally the five minutes pass. I do my dance of testing while running again and feel simultaneously proud that I waited the full five minutes, and annoyed that I went low during my run. The number flashes - 89. I let out a loud sigh.

The lights from the beach come into view and I fall into an easy stride, trying to lower my heart rate and slow my breathing. I hit two miles and slow to a walk. My house is around the corner. I think of how we have no street lights here and how my friends in Bergen County find this terrifying.

When I make it through the front door I declare to my mother that I don't like running at night. She's thrilled. My sugar stays steady throughout dinnertime, and I tuck my fears away. Until next time.

Data Overload

Technology's advances in today's world have become a hot-button issue. Is it as helpful as it is hurtful? Is the constant connection to the blue screen just too much? Rudimentary statistics have come out regarding the pros and cons of tech, but it may be too soon to tell what the long-standing impacts are on our overall well-being. When it comes to diabetes tech, the concerns are no less significant.

Continuous glucose monitors

Probably the biggest advance in diabetes technology since the insulin pump, Continuous Glucose Monitors (CGMs) have become widely used tools by both type 1s and type 2s. Whether you're a Guardian, Libre, or Dexcom user, you no doubt know how much this technology has impacted your diabetes care. These little guys check our blood sugars without us having to finger stick, tell us if we are trending up or down, and even tell us the speed at which we're trending. They alert us, our phones, and even our loved ones if we so choose. It sounds amazing to most people, but there's a downside here.

Too much of a good thing?

What's helpful about a CGM can also be harmful - we are inundated with data. This constant stimulation can be super overwhelming, especially for someone who's had diabetes since long before this tech was available. Before CGMs, you would test, bolus, eat and then not think about your BGs so much until you were going to eat again or if you were symptomatic. We didn't know what was going on in between our finger sticks. Now, we know immediately when our sugars begin to rise or drop. The issue is, once we see those dreaded arrows, it's difficult for some of us to just observe. We feel the need to correct, even though our sugars are supposed to rise after meals. That's just what happens. Just like sugars start to drop when we exercise. There is a constant pressure to have the straightest line possible, but is this really realistic? Trending down doesn't mean we are bound for a hypo, and trending up doesn't mean our IOB won't bring us down like it's supposed to.

A common vibe

If you don't believe me that this awesome technology has a downside, I'm not the only one feeling it. I recently read a post from Libby Russel for Beyond Type 1, reflecting on her experience using a Dexcom. This spot-on hits all the frustration that comes with wearing a sensor. Reading about Libby's struggles and her relating her Dexcom to an overly attentive boyfriend was super relatable (and hysterical). Data overload is also touched on a lot in Out of Range, Beta Cell's podcast with Craig & Laura. And an overwhelming seventy percent of Instagram followers who participated in my poll agreed they over-correct based on sensor data. These little arrows can wreak havoc on our peace of mind.

Now, don't get me wrong. CGM is an amazing tool to better know your patterns, and is essential for people who don't feel their lows. But it can be a tough road, learning how to calmly observe our numbers without overreacting and panicking. It's a skill that takes practice and fine-tuning. But we're used to that, huh?

Back to School with Type 1

It's that time of year again! Fresh pencils, new notebooks, and football games. Back to school is upon us once more. Whether you (or your child) are heading back to elementary school, high school, or packing up for college, you need a game plan when it comes to your T1D.

Know your rights

If you attend public school, it's important to know that you have certain rights as a student with type 1. Under the Americans With Disabilities Act (ADA), public schools are mandated to provide reasonable accommodations for students with a disability. The ADA classifies type 1 diabetes (along with many other chronic illnesses) as a disability. The goal of ADA in schools is for every child to have access to the education they deserve.

There are many organizations out there that advocate for families who feel the school isn't complying to ADA guidelines. In New Jersey, the one I most commonly refer families to is SPAN. You can also reach out to your local universities' law clinics, who may offer pro bono services to families. You'll want to look for a clinic that specializes in education law.

Terms to Know

• 504 Plan: More commonly referred to simply as a "504," this is a documented plan that lays out the accommodations you or your child require as a student with type one. Examples include access to water, being allowed to test in class, and bringing a buddy to the nurses office.
• Child Study Team: This team typically consists of a school social worker, psychologist, counselor, and the student's teacher and paraprofessional (if applicable). While a 504 doesn't necessarily mean the CST will be involved, they may be a good team to approach if you have questions regarding your accommodations, how to set up a 504, or if you're concerned the school isn't adhering to your 504 plan.

Setting up a 504 can often be done with the help of the principal and the school nurse. You will need a letter from your endocrinologist specifying the accommodations that you need, and explaining the medical necessity for them. Most pediatric endocrinology offices are familiar with 504 plans and have templates for families. If you're struggling, ask if your endo has a social worker you can speak to. Also, Beyond Type 1 has a template for a 504, and other useful resources & information for going back to school with type 1.

Tips and Tricks

As someone who has done diabetes all the way from pre-K through grad school, I've had many experiences, both positive and negative, and am happy to share my tips and tricks.

• Get a jump on things. Do you know who your school nurse is? Your teacher? All your teachers? If you do, contact the school and see if you can set up a meeting before the semester starts. This way, the staff will be familiar with you, familiar with type 1, and familiar with your plan of care.
• Be an advocate. It's an unfortunate reality that some schools don't follow the regulations they are mandated to comply with. Don't let them get away with it. Be an advocate for your child, and teach your child to grow into an advocate themselves. If you need help, utilize the resources discussed above, or try reaching out to your local JDRF chapter.
• Have a low box (or two). Low boxes at school are essential. All you need is a pencil box and your low supplies of choice, with an extra meter for good measure. I used to keep a low box in my classroom, and in the gym for gym class. Whenever we went outside, our gym teacher would have the low box in tow. Also, it's quick to grab during a fire drill or an evacuation - you never know how long you'll be outside.
• Know your nurse. If you're lucky, your nurse will be your number 1 person at school. My K-3 nurse was one of my best friends at school. It's good to have someone in your corner, and someone to look out for you. Also, make sure your school is prepared if your nurse is out for the day - who is their back up?

Bottom line for back to school: know your rights, be prepared, and stand up for yourself (or your child). Ask for help when you need it. You got this.

Internalizing Our Numbers

Instagram: @diabetictruths

There's a lot of bad habits we accumulate as type 1s. Not changing our lancets, scattering our used test strips all across the globe, over-treating our lows...the list goes on. But a particularly bad habit we have is internalizing our numbers.

When I say "internalize," I mean we take our numbers too close to heart. We see them as a direct indicator of how good or bad we are doing at life. 

When I say numbers, I am referring to many things - our sugars, our A1Cs, our percentage of time in range. 

Over-identifying is something I talked about in my last post about guilt. We tend to see our numbers as a direct reflection of who we are as people. And we put a lot of stock in the numbers we are inundated with on a daily basis. We're all familiar with the dreaded trip to the lab to get our A1C checked, and the tense waiting period until we get our report card delivered to us by our doctor.

A word to healthcare providers

To be clear, numbers are an integral part of diabetes. Aside from our gut feelings, they are the only somewhat clear indicators we get in this ambiguous, ever-changing disease. Also, doctors love numbers. Numbers are data. This is definitely a factor in the development of this habit. We have the message "lower A1C" drilled into our heads by our diabetes team. We see the looks of disapproval when our numbers are higher than preferred. And for sure, we all try our best to keep our numbers in a reasonable range. There is no doubt that numbers in range keep us in better health. But numbers are also rigid. They are a spot, a speckle on the vast map of our life with diabetes. And taking numbers at face value can lead to unnecessary stress. It shouldn't be that a high A1C result delivered by a stern endo causes a slow spread of shame across our psyche.

For example, consider A1C. Anyone on a medical team who hears an A1C of 10% will not be able to stop themselves from spiraling off into a lecture of how awful you are doing. But maybe your last A1C was 14%. Or maybe your health insurance termed last month and you've been rationing your insulin. There are so many factors that are hiding behind the numbers. This is an important thing to remember if you are a healthcare provider, or if you know someone with diabetes. Don't jump the gun. Gently explore what is going on with your patient from a non-judgmental, not-knowing place. It's so easy to delegate people into the dichotomy of "bad/good" A1C," which then often translates into "bad/good" diabetic, or "bad/good" person.

Being kind to ourselves

On our end, we must work to be kinder to ourselves. In the world of social media, it's especially easy to fall into the trap of comparing our numbers to others'. It's easy to see another person's flat line on their Libre and assume they're having a great day. But, as we all know, there's usually a deeper story. Work goes into those numbers. Stress. Blood, sweat, and tears. And sometimes they're not the numbers desired.

So, the first step is, stop comparing. Focus on you, and your care. Your body is different from any other body, whether it's a fellow body with diabetes or not.

Next step, take your numbers in context. Remember they are only a piece of your diabetes. Use them to inform how you care for yourself, but don't make a mountain of them.

And finally, advocate for yourself. Don't let others make you feel badly about your numbers. They are yours to feel how you want about. If your doctor or your partner or an annoying stranger is solely focused on the numbers, speak up. No one deserves to feel ashamed of their care. We're all doing the best we can.