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.

Resource Hub

NOW IN PROGRESS

Who doesn't love resources?

As a social worker, much of what I do is provide resources. Whether it's for finances, prescriptions, mental health, or community support, there is an abundance of resources to be found and shared. The more time I spend in my field, the more I realize how the type 1 community would benefit from many of these resources. This is why I'll be constructing a resource hub that will become a permanent page of my blog. You can find it next to the "Medical Disclaimer" bar. This will be an ongoing project - I'll continue to add resources as I come across them. Most importantly, I want to hear from you guys - know of a resource that I don't have on my page? Have a good or a bad experience with one of them? Let me know!! The resource hub will go live on Thursday, August 2nd, so stay tuned.

Thoughts on a Fractured Foot

As I write this, I stare pitifully down at my left foot and right knee. Each is carefully draped with an ice pack. My left foot is wrapped in an Ace bandage, awaiting an evaluation by an orthopedist for the fracture in my fifth metatarsal bone (think - the pinky bone of your foot). The swelling in my right knee seems to have gone down, but I'm over-icing it as a precaution. We still don't know what exactly is causing the knee swelling - it flares up after running or excessive walking. But a fracture in the left foot means crutches and weight-bearing only on the right leg. Which means pressure on the bad knee. Which means excruciating pain and more inflammation. My Omnipod sits inconspicuously on my left thigh, an afterthought. I use my PDM to bolus for my Sunday night ice cream, then spend five minutes over-thinking how much Aleve I should take before bed.

I'm not good at being still. Resting and elevating has been a challenge for me. Sure, I got to watch Moana and take a nap on the couch, but I like to be moving. Laying in bed last night, I didn't sleep much, unable to stop focusing on the pain in my knee. The more I lay around and think, the more often I came back to the same thought - am I being a huge wuss? This is temporary.

I mean, I've lived with type one diabetes every day of my life for the past 25 & 1/2 years. It comes to me as naturally as breathing. The pricks, the pokes, the highs, the lows...but this - struggling to get around - this is new for me. And its gotten me thinking. We struggle with what we're unfamiliar with. Someone from the outside looking in would probably assume that taking care of my diabetes is incredibly stressful. They would see the broken foot and think it was small potatoes compared to my daily finger pricks. But not me. For me, diabetes continues to be a nonchalant part of my daily life, while this foot fracture has me tossing and turning, butt-scooting and crawling around my house.

At the same time, I think that what we go through prepares us for what is to come. Time has passed and I've been given a boot for my broken foot. I've grown to have a love-hate relationship with the boot - much like the relationship I have with my diabetes supplies. I talk to it, I give a pat after it helps me get around, I consider naming it. I feel living with a pump has predisposed me to have a certain level of amicability towards health-gear. I realize the necessity of it and try not to begrudge it for doing its job.

We as humans are creatures of habit. It seems that for most of us, hard and easy are subjective - what's new is hard. Type one, for me, is easy compared to broken foot. And yes, in case you were wondering, I did decorate the boot. We'll see about the name.