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.

Type 1 and Guilt

There is a specter floating around in the type 1 community. It haunts people and parents living with type 1, coming out to play during our lowest moments. The specter is guilt. Feeling like a burden.

There's definitely a difference in the kinds of guilt experienced by those who have type 1 and those whose loved ones have type 1 (namely, parents). Parents of type 1s may experience guilt in several ways: guilt that their child is sick, guilt that they couldn't prevent it, that they couldn't protect them, that they could have caught it sooner, and so on. Upon diagnosis parents often need to be reassured that there was nothing they could have done to cause their child's diabetes, or anything they could have done to prevent it. Very often, it is parents' keen eye and instinct that bring their child in to the doctor or the emergency room. They took care of their children, as most parents do, to the best of their knowledge and ability.

Parents of type 1 answered a 50/50 split of feeling guilt regarding their child's diagnosis. (Instagram: @diabetictruths)

For those who have type 1 themselves, the relationship with guilt can be more insidious. Even for those who are diagnosed young (myself included), guilt will worm its way into thoughts and feelings about diabetes. I have a vivid memory of having to be picked up early from ballet class after a low at around age 10. After 15 minutes of sitting and wallowing in my sorrow, my mother arrived to get me. "Sorry I'm such a burden on you and Dad," I spat as a hello. I remember her being appalled - her and my father never complained about having to take care of me. Why would I say such a thing? Was I being a drama queen? Not exactly.

Feeling like a burden

When it comes to feeling like a burden, it seems that I was far from alone in my feelings. What I've found - on social media, at work, or listening to different type 1 podcasts - is that the majority of type 1s struggle with this feeling from time to time. 
However, this issue isn't just specific to diabetes. The Kidney Disease Quality of Life Survey (KDQOL), administered to dialysis patients ages 18 and older, specifically asks the same question I posed to other type 1s on my Instagram. The KDQOL asks in its "True or False" section how true the statement "I feel like a burden on my family" is. Feelings of guilt and shame aren't just things that diabetics struggle with - it seems that any chronic illness that significantly impacts daily life poses a risk of this side effect.


On the upside, it seems that people living with type 1 don't feel this way all of the time. More commonly, they feel this way on bad diabetes days. Like all negative thoughts, guilt tends to creep up on us during difficult moments. If our sugar levels are really out of whack and we have to rely heavily on our loved ones, we're more prone to feel like a burden or a bother. 

Also, if diabetes interferes with plans or social activities, it seems the majority of type 1s are reluctant to break the news to those they are spending time with. It would make sense that this is reluctance stems from that same fear - feeling like a burden. Ruining the day for everyone. Interrupting the fun with your diabetes. These thoughts can be seriously detrimental to our state of mind - thoughts like these increase shame, guilt and embarrassment, which can lower our sense of self-worth.

Why?

Guilt and shame are feelings. Feelings are a direct result of our thoughts - how we perceive what is going on around us. So what thoughts are we having that feed these feelings of guilt? 

I have to cut this hike short. My sugar's going low.

This is awful. I'm ruining everyone's day. 

My mom gets so worried about me. I am such a burden to this family.

The issue with these thoughts is that without realizing it, we are over-identifying with our diabetes. Yes, our moms are worried about us. But is it you yourself that is the stressor on the family? Or is it your diabetes? It's often hard for us to remember - they are two different entities. Parents may have been devastated about our diagnosis, but it is our diabetes they are upset with, not us. We might be upset that we have to cut the hike short, but it's diabetes that interrupted the day, not us.

This isn't to say that we should shirk all responsibilities that come along with diabetes. Even though diabetes is a separate entity, it is still something we have some control over. Rather, this is about changing our thoughts regarding diabetes and ourselves. It's about changing the way you talk to yourself (otherwise referred to as self-talk) about your type 1. Diabetes may be an integral part of who you are, but it is not you yourself.