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?