A Monster.

Diabetes is a monster. A monster. And while yes it is scary, this monster is dumb and unaware.

This monster doesn’t realize that it isn’t just attacking my pancreas, it is attacking my mental strength and my emotional capacity. It doesn’t realize that it hasn’t just affected my life, but those around me, creating the biggest of strains on my family. It doesn’t realize that it is creating sleepless nights and deep worry lines in the faces of my parents (don’t worry you still look great). It doesn’t realize that it isn’t just taking away my ability to break down food but taking away my ability to feel normal. It doesn’t realize that it creates so much hassle and just many days of feeling like crap. This monster doesn’t realize that it made a five year old girl grow up too fast.

But I feel bad for this monster.

What this monster also doesn’t realize is that in its attempt to scare me and take over my life, it has created a bravery, determination and fight within me that I didn’t know possible. It doesn’t know that it hasn’t broken my spirit, only made it waiver at times.

This monster didn’t realize that when it chose to attack my body, I wasn’t the only one involved in the fight. It has brought me to some of my closest friends and shown me what having a true support system means. It has made me appreciate life to its fullest. It has created this strength within me that when I feel like crap, to go on with life with a smile on my face. It has taught me what hard work is and how good it feels when hard work pays off. It has brought my family and I closer together. It has made me a great mathematician. It has matured me and taught me to problem solve better than any class I could take. It has showed me what defying the odds mean and not letting it dictate what I do.

And what I think most importantly, this monster has not realized that it has given me my passion for life. A reason to study in DC. It has helped me give a voice to the voiceless. Diabetes, you are a monster, and you may be unaware and dumb, but a beautiful monster. A blessing.

I like to believe that this monster was not purely evil and was just as innocent as I was when it invaded my 5 year old body. It was forced to come against its will, to choose a person to invade. And after choosing me, I think that this monster hoped (as much as I hope for a cure now) that this little girl would be strong enough to handle it.

Guess what, she is.

dumb monster

AB

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Beacon of Light.

I sent my mom my pump upload and counted to ten. It was sophomore year, and I had not really been feeling my best. I knew it was bad. Really bad. But I didn’t want to admit it. Right on cue the phone rang. I said a quick prayer and answered.

What followed next was a culmination of tears, arguments, excuses, and bottom lines. I didn’t have an answer to the “What have you been doing to yourself?” question from my mom and I had hit bottom. Rock bottom. I had fallen victim to diabetes burnout and needed the “Come to Jesus” talk as my mom likes to call them (She’s Jesus in this scenario in case you were wondering).

I think diabetes burn out is unintentional. I didn’t wake up one day and think “Hmmm I am going to be burnt-out today”. A lot of times I do not even notice I am burnt-out until I realize I have high blood sugar the majority of the time and I feel like crap.

It happens when class work piles on, work schedules get busy, friendships are booming, and there are a million other things in the world I would rather be doing.  I mean who really sees pricking your finger, figuring out carb counts and temp basals, voluntarily shoving needles into your abdomen and legs as fun, and furthermore as a priority? I certainly don’t. If we did I don’t think we would have such a thing as burnout.

Getting out of it is hard. Hard? It’s nearly impossible.

Once you finally realize your burnt-out all of the emotions you were suppressing hit you like a tidal wave.  It is a blindside of anger, sadness, shame, frustration, guilt and fear you didn’t know existed. I am angry that this is happening to me when my peers appear to live carefree lives. I am sad because I feel like a failure. I am ashamed that I can’t complete what are essentially easy (just undesirable) tasks. I am frustrated that diabetes has come to the forefront of my life during this time. I feel guilty that my mom sees it as giving up on myself and my health, and fear if I will ever be able to get out of it?

You have to ask for help. My beacon of light is my Type 3, my Mom. Not only because she is a CDE and can give me tangible tools and pump changes to get my management back on track, but she cares. I know when I cried to her on the phone back in sophomore year, tears were in here eyes too. As a mom who lost her own brother to complications of diabetes she has seen a reality that I have not, and one she wants to avoid. When I am not healthy and at a minimum not doing the mandatory tasks, it is heart wrenching to her. She feels the pain of diabetes burnout every time I do.

She doesn’t want to hear her Grade A student is sleeping through class because her blood sugar is high. Or that she has no motivation to go to the gym because she feels like crap. She doesn’t want her daughter to feel this burden.  To feel hopeless and to feel like a failure. And her least favorite thing to do is be the disciplinarian, but someone has to do it and she refuses to watch from the side, helpless. We must find common ground and move forward in a loving, non-judgmental fashion.

And lastly you have to reach a point where you are willing to accept the help being offered. I have had to set my pride aside at times and stop fighting the system and those who are there to help me. Not checking your blood sugar is not an option. Not giving your insulin is not an option. But sometimes you just need some extra encouragement and someone to tell you diabetes sucks, and it is okay.

It is okay to be burnt out. It happens to everyone. You just can’t stay burnt out. You just need your beacon of light. 

mom and mebeacon of light

AB

Brainwashed.

I have been brainwashed.

Ever since that day in June of 2000 I never felt thirsty without immediately thinking I had high blood sugar and it was the last time I would feel hungry without thinking my blood sugar was low.

Its because of this disease I often forget that we, as humans, are allowed to feel shaky, grumpy, sweaty… hungry and we are just that, hungry.

I forget that it is normal to have a dry mouth and be thirsty when it is hot out. It doesn’t always mean you have a high blood sugar.

Because of Diabetes I have been brainwashed into thinking every kid lived with life-threatening worries, fears and burdens on their shoulders, even at five years old.

Diabetes brainwashed me into thinking that anyone’s parents who chaperoned a school field trip was there because their child had a health problem too.

Its because of diabetes that I think any other person I see drinking a juice box must be doing so because they have low blood sugar.

Because of diabetes I can never walk around in public without scoping out insulin pumps, even from a mile away.

It has brainwashed me into accepting the weird stares at the beach because of pump sites and dexcom sensors.

Diabetes has single handedly changed the meaning of “feeling sick” because I feel subpar on the daily and I do not look phased to the outside world.

This little demon living inside of me took away any freedom I had to feel like a normal person… but it has given me a new normal.

It is now “normal” for me to grin and bear the ignorant and uneducated comments and statements made about diabetes.

Diabetes made it “normal” to approach life with a unique appreciation for all of the times you just feel really, really good.

My new “normal” is to know what hope feels like, even in the direst situations.

My new “normal” is knowing what empathy, resilience and support really mean because of all of the amazing people with diabetes I have been blessed to meet throughout my life.

It is my new “normal” to embrace my passion to do whatever I can to make a difference in the lives of those with type 1 diabetes… without being ashamed of it.

I have been brainwashed.

Ever since that day in June of 2000, I have been shown countless times that everything in life happens for a reason and it was the last time I ever doubted the strength my family and I have to face this challenge.

AB

The Everyday Daredevil.

Type One Diabetes. It can be unpredictable, it can be inconsistent, it can be uncontrollable, it can be unmanageable, and it can be scary.

Some perceive the horror of diabetes as purely the threat of complications. Diabetes neuropathy, amputation, ulcers, blindness, and kidney failure are plastered every place diabetes is mentioned. Whether it be TV or print ads, doctors’ offices or unsolicited information from the general public.

But for someone who puts forth even a minimal effort towards managing their diabetes, such as testing their blood sugar and taking their insulin, these scary complications seem so distant.

I will not be intimidated by my disease or the complications that may develop. What will happen, will happen, and if I am doing my best to manage this disease, I cannot control the future. But these complications from diabetes, are not what people with diabetes are really scared of.

Scary? Is being surrounded by people who have no idea what to do during a diabetic emergency.

Scary? Is having a seizure if I’m alone in my dorm room.

Scary? Is unexpectedly going low while driving because hypoglycemia is synonymous with driving while intoxicated as well as unintentionally injuring someone.

Scary? Is being burdened with stigmas and discrimination if you reveal such a huge part of you to the wrong person.

Scary? Is Dead in Bed Syndrome.

Scary? Is knowing I could pass the genetics to develop diabetes down to my children.

Scary? Is not having insurance or the means to afford supplies that keep me alive.

Scary? Is knowing that the rate of diagnosis is rising at epidemic levels and WE can not do anything to prevent it.

Scary? Is having to spend hours in the Emergency Department fighting DKA, and then not being able to pay the bills.

Scary? Is knowing people with diabetes are and feel alone.

Scary? Is not being able to control your emotions, losing control of your thoughts, and regretting a decision because you fall victim to a low blood sugar.

Scary? Is knowing a simple cold can turn into a serious and immediate sickness.

Scary? Is not seeing the light on the other side of this never-ending tunnel.

But you aren’t lectured on these kinds of fears. There isn’t a treatment or pill to relieve these pains. These are the fears that are seldom talked about and are discovered on your own without warning.

The fears that follow us around day in and day out, may deem us worthy of the title “dare devil”. But unlike traditional daredevils, we, unfortunately, don’t seek out fear or adrenaline, we succumb to them. We do not thrive off of these fears, they can paralyze us. These are not thrilling-adrenaline-inducing fears people enjoy. These are the gut-wrenching-keep-you-up at night kind of fears that can consume your life if you let them. It’s the kind of fear that no one knows about because it is hidden from everyone on the outside. We did not choose this fear but none the less we stare these horrors right in the face everyday.

Somehow we muster up the strength we didn’t know we had to conquer the unconquerable. We find the fight within us to EDUCATE ourselves and FIND SUPPORT in others, to not let fear be the puppet masters of our lives. We live life unscathed by this fear knowing that the fears we face today, will be the fears we face tomorrow, and for the rest of our lives. This takes more strength, courage, determination, and faith than any dare devil can ever know.

Bob Marley sums it up best with his quote, “You never know how strong you are, until being strong is the only choice you have.”

you-never-know-how-strong-you-really-are-until-being-strong-is-the-only-choice-you-have

AB

Superheroes at Summer Camp.

Superheroes reside in the hearts of those fighting big battles. But I think that even bigger superheroes reside in the hearts of those fighting big battles that you know nothing about.

Had you pulled up to Camp Setabaid in Bethel, Pennsylvania throughout any given day you would see kids of all ages filling their water bottles after playing soccer and kickball, campers excitedly jumping into the pool or patiently waiting at meal times. You might see looks of exhaustion on the faces of all the counselors or joy on the faces of campers dressed up in silly superhero costumes.

However, if you looked a little closer and spent the day with those same campers you would know that they were filling their water bottles because their mouths were as dry as sand paper. The lack of insulin or burst of excitement caused an unpredicted high blood sugar, but these warriors refused to sit out.

If you stuck around for pool time you could see that every single kid had either bruises from injections or pump infusion sets on their arms legs or stomachs. This was a short moment in their lives that they would be “free” from the tether connecting them to the fears, confusions, and worry of diabetes, but also their connection to what keeps them alive.

Oh and the starving campers not rushing to the food line? They weren’t just sitting there for fun. They were mentally calculating, adding and dividing, the amount of carbohydrates they were eating and the insulin they needed for a correction or bolus.

At any sleep away camp you would expect to see tired counselors. But these counselors were not only tired from chasing kids around all day but from getting up at both 12am and 3am to check the blood sugars of all their campers to make sure they weren’t high or low and to ensure they would make it through the night.

At Camp Setabaid, dressing up as a superhero was fun and silly but also represents the strength the campers and staff muster up everyday to live a normal life despite our own bodies attacking themselves. The masks and capes didn’t just represent the characters we read about in comic books but the superheroes inside all of us as we fight the never ending battle of Type 1 Diabetes.

You would realize that this past week at Camp Setabaid, there was a sense of community like never before. It was a place where strength, empathy, learning, compassion and relief filled the air and worries, burdens, fears and stigmas vanished. All of the campers and staff at Camp Setabaid are fighting battles or helping someone else fight battles that you know nothing about.

What makes them superheroes is that they are doing so with perseverance, grace, strength, resilience and bravery; and they do not need a cape to show it.

group photo secret identity

AB

An Open Letter to Athletic Coaches.

I grew up playing soccer. I’ve hit a few softballs around, I ran track for a year or two, and in high school I was a 3 season varsity athlete with field hockey, swim and lacrosse. In college I continued team sports by rowing crew. Those were the best years of my life. But they were also the most challenging… especially with diabetes.

At practice, some days would be slow long distance runs or rows, other days would be quick, 2k, sprints or fast drills with short bursts of energy. Not to mention game days, swim meets or regattas. Every day at practice would be something different, a little unpredictable and always a guessing game. I struggled to keep my blood sugar within range during this time in my life, even off the field, and no matter the elaborate plan we made and executed, I could just not get my blood sugars to do what I wanted them to do.

I think every diabetic athlete knows the feeling of disappointment that comes with having to admit to your coach you are low and need to take yourself out of the game or practice. Every diabetic athlete knows the shame that comes from the looks of your teammates when you sit on the side of the field watching them play the game you love. You can’t help but think to yourself that they perceive you as weak and incapable of keeping up. No matter how supportive your coaches and teammates are you never feel like anyone ever understands that your 16 minute mile is because your blood sugar is 300, not because you aren’t strong enough. And your inability to sprint up the field is because your blood sugar is 60 and crashing not because you don’t have the endurance.  You can’t help but feel guilty when your bow pair has to stop rowing as well because you can’t finish the set. You feel like your diabetes is not only taking you down, but your whole team as well.

I have now strayed from the team sports life but I frequently run, bike, lift or visit the gym multiple times a week. I plan my workouts at the beginning of the day. I plan what I will eat before hand, what I am doing after my work out, how long it will last and how intense it will be. All of these decisions are in my control and I have been more successful than ever at gaining strength, not having to stop for juice boxes, sustaining an in range blood sugar post workout and even dropping pounds (yay).

So why this difference? Why can I now workout harder and longer than any field hockey, lacrosse and swim practice and feel empowered instead of guilty? Feel strong instead of weak? Feel like I am in control? Well the difference is that I am in control. I control the intensity, the time of day and my diet. I am my coach, I am my teammates and I am an athlete.

Coaches, I understand that you like to keep me on my toes and train me to be ready for anything, but going into a practice blind is also my worst nightmare. Sometimes it can be easy to forget but not only am I trying to be a high performing athlete but I am also trying to keep myself alive. But to all sports coaches, if you have an athlete with diabetes, think about giving them the weekly practice plan in advance. You aren’t cheating them of their work out. You are actually enabling them to be the fastest, strongest and best athlete they can be. You have no idea how much of a difference planning their diet and insulin before hand will have on their performance. The athlete with diabetes will be less burdened with trying to keep up with everyone even though their body is slowly quitting out on them. Giving the athlete with diabetes this information shows that you care and want them to succeed.

To all sports coaches that I have had, thank you for always being supportive no matter how slow I was because my blood sugar was out of range, getting me a third water bottle because I downed the other two and for asking me if I was okay when I drank my fourth juice box that practice. Thank you for not giving unwanted attention when I was sluggish during an important game because I was battling diabetes the entire day leading up to it. And thank you for carrying my glucagon in your pocket, your bag and launch boat… I’m glad we never had to use it.

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AB

“The Low Hangover”.

Definition: Low Hangover – noun – the term used to describe the horrible and fatigued feeling after a diabetic over treats a low.

The Dexcom alarms that all too familiar alarm. You suddenly feel a little sweatier, a little shakier and a little fuzzy. You check your blood sugar and the two digits on the screen confirm the feeling. You’re hypoglycemic. What transpires next happens all too fast, without even thinking. You get to the pantry and it is an out of body experience of watching your arms reach for packages, your fingers rip open containers and your teeth chewing anything that is not nailed down.  After just a few short minutes of bingeing on food you know you didn’t enjoy, you start to realize the damage you just did.

You’re eating food you know you shouldn’t be, and had you not been low, you would have never eaten it, but honestly, you weren’t in the right state of mind. Your Endo’s words replay in your head. “You only need fifteen grams of carbohydrate to raise your blood sugar.” You know she’s correct, but to have that kind of self-control during a low I think I would need a miracle. I mean really, how do you choose those chalky, sour, dry tabs when crackers, chips, m and m’s, peanut butter, and chocolate milk exist in this world? That temptation is hard to beat with a clear mind, and even harder with a fuzzy mind.

You quickly see that steady arrow on the Dexcom turn into the double up arrows and you immediately think, “oh no, what did I do?” Up, up, up it goes and you know you over did it… again. Suddenly the shakiness, hungriness and hypoglycemic symptoms subside into a “soapy-feeling” mouth, a dry throat, an emerging headache and you feel a little lethargic.

Eating everything besides the kitchen sink has turned your low blood sugar into a high one and because your blood sugar fluctuated more than a roller coaster at six flags, you feel worse than you did before you treated the low. It’s like a hangover. It’s the low hangover; and you suddenly regret not having those tabs.

low hangover pic

AB

Coca-Cola: Opens Hope.

I had regular Coca-Cola once. I was five years old. Just diagnosed with diabetes a few months earlier and we were still a little uneasy about daily excursions but this day at the zoo could just not wait. We arrived, visited the monkeys and not even 20 minutes later I felt the shakiness and hungriness kick in. I was hypoglycemic. To make matters worse I had been low only 20 minutes before that so my beloved Juicy Juice juice box was long gone. So we worked with what we had. A McDonald’s with regular coke. I took one sip, and hated it. Hated it. I just wanted my juicy juice. I started crying because I thought it tasted so bad. But I was forced to drink it, because in the long run I guess it SAVED MY LIFE.  COCA-COLA: OPEN LIFE SAVER.

Unlike the Cross-fit CEO who might have been trying to open up a dialogue about insulin resistance related to Type 2 diabetes and the insulin resistance that some of us with Type 1 diabetes experience, he insulted thousands of people in less than 40 characters.With the words,

“Make sure you pour some out for your dead homies…Coca-Cola: Open Diabetes”

the diabetic communitys’ world was flipped upside down.

Anyone who adds their two-cents in the diabetes online community should be congratulated because each of us experiences this disease a little differently and although different we find support and community in sharing our stories. A community that works together stays together. COCA-COLA: OPENS COMMUNITY.

I would like to thank Nick Jonas for finally adding more to the conversation after it seemed like years of just adding in tidbits of awareness here and there. He, along with the thousands of others on twitter and Facebook, helped create a national stage (on Good Morning America) for diabetes awareness. We all know that any attention paid to our cause is time well spent on the national news.

What I think made this even more of a story is the fact the faceless person behind the @Crossfit twitter account did not do what any seemingly sane tweeter would do after pissing off tons of people, just apologize for a miscommunication and misunderstanding. The key word being, APOLOGIZE. The thing is, neither of these things happened. Instead, @Crossfit went on the attack, telling other people who were standing up for type 1 and type 2 diabetics everywhere, that they were fundamentally wrong. This went on the entire day and all I was wondering is who was hired as the PR coordinator and when were they going to be fired?

I wanted to give them the benefit of the doubt and believe they really were trying to make an interesting point. However I lost all faith when the tweets kept going even further, to play on peoples’ already offended emotions, by adding more unprofessional commentary about how KFC is going to donate a dollar to the JDRF for every big gulp Pepsi that is sold.

One of my last thoughts on this is, is if Coca-Cola will officially comment on the fact that @Crossfit stole their logo and is essentially using it to shame and embarrass people who innocently fell victim to a chronic illness they have to live with for the rest of their life.

There are lots of people of the DOC (diabetes online community) coming to the defense of diabetics, t1 and t2 alike, with intelligent and passionate responses. To all of you I have to say thanks. You are a reminder that I am not running this never-ending marathon alone. It shows me that the burden of hurtful comments is shared on all of our shoulders. And it is evidence that I am not the lone teacher of millions of students on the intricacies of diabetes. To all of you, COCA-COLA: OPENS HOPE.

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Today is My Diaversary.

Today is my diaversary. It is just like any other day.

Today is my diaversary. It was this day fifteen years ago that part of my life could be described with the word “diabetic”.

Today is my diaversary. I did some chores around my uncle’s house, went to work at Market Basket, ate sushi for dinner with my mom and treated ourselves to ice cream Sundays.

Today is my diaversary and I tested my blood sugar and gave insulin like I do every other day, but this day I feel somber but proud about doing it.

Today is my diaversary and I absolutely hate diabetes. Hate it.

Today is my diaversary and I realize I shouldn’t really feel any different at all because nothing about diabetes is really new. It is just my life and that’s that.

Today is my diaversary and I am more thankful than ever for my Mom Jeanine, my Dad Chris and my Brother Christopher, for always being there, my friends who have helped with my morale all of these years and all of the amazing t1ds I have met because of this disease.

Today is my diaversary and I think some of my dreams have come true. Diabetes helped uncover the determination, strength, hope and resiliency I had all along.

Today is my diaversary and this past year was very difficult with sicknesses and I saw how scary this disease can be with my first trip to the ER since being diagnosed.

Today is my diaversary and I know for the past fifteen years, because of my unsteady or out of range blood sugars, my best feeling is what people feel when they are sick, and feeling bad has become normal.

Today is my diaversary and I want the bionic pancreas.

Today is my diaversary and… there goes my Dexcom alarming that I am high because I didn’t bolus correctly for my celebratory ice cream.

Today is my diaversary and I am more hopeful than ever for tomorrow, and the next day, the next month and the next year because I know it will be okay.

AB