Ketones and Love

Some Wednesday in November, 3:00am:

I woke up suddenly. Unaware of if I was even awake at all. My heart was pounding so hard in my chest and my head was groggy, but spinning. I could hardly breathe. I looked over at you sleeping soundly and then pulled my weak, nervous body out of the warmth of the bed, using a white furry blanket as a cloak, and went to the kitchen and got a drink of water. And another. And one more. I knew my blood sugar was high. Fuck.

I went to the bathroom. I rustled around in the cabinet above the sink for my ketones strips. I opened up the small white bottle and pulled out one thin, plastic strip. I sat on the toilet with my blanket wrapped around me and held the strip between my legs as I peed. Super casual. I then waited for the results. The little foam square on the end of the strip turned from white to a deep, purple wine red. Red is my favorite color. But this particular shade in this particular place was informing me that my urine was testing positive. Positive for having poisonous chemicals called ketones rampantly pumping through my body. My body was breaking down my fat as fuel, a sick alternative source of energy,  as it was thirsty for the insulin it wasn’t getting…the kind my body doesn’t make. The acid was building up in my bloodstream. If I didn’t act fast, I would slip into diabetic ketoacidosis, I could die. This little red square has told me so.

I went back to the bedroom and felt my mind get pulled further away from reality. I turned the lights on, I noticed I still had the pee stick in my hand. My meter read “ABOVE 600.” I looked down at my site and saw it was leaking. I did a site change, only then becoming aware of the fact that it was 3am. I gave myself a correction with a flexpen shot. I placed my hand over my chest, feeling my heart pound. My mind was racing. I was so scared. I started to hyperventilate and tears built up in my eyes. I felt so sick. I felt nauseous, intentionally holding back vomit I could feel in the back of my throat. My hands felt numb and my head felt like shards of glass were cutting the delicate tissue that makes up my brain. I started to cry.

Frantically, I rustled around the floor for my cell phone. You were awake now. Observing the manic episode in a state of confusion due to it being 3am on a Wednesday night but also with discernment, knowing I wasn’t well. You asked what was happening, in a calm and caring tone. You have always been pretty good like that. You have a certain grace about you that people get half from the ingredients that make up the bits of who they are but also from experiencing enough tribulations in life to know how to keep a cool head.

I called up my friend Lauren, she worked with me at diabetes camp the past summer and told me she had a recent episode of DKA. She and I also have similar experiences with diabetes, our typical blood sugar ranges and treatment styles. She answered the phone after a few rings, thankfully she was in Arizona so it was only around 10pm for her. I’m sure she could hear the worry in my voice. She told me I was going to be okay but to keep an eye on everything. If nothing changes within a couple of hours, get to a hospital. Lauren was telling me everything I already knew. The Protocol. In moments like this you sometimes need a friend to act as a mirror to your own conscience. Reaffirming that you can handle this. Telling you the words you know by heart.

Same Day, 3:45am:

There we sat. Waiting. I would check my blood sugar periodically to see if the insulin was bringing it down. It wasn’t. You went to go fetch me new glasses of water as soon as I finished them. I couldn’t drink anymore. I felt so sick. My mouth was dry and my heart was pounding despite having had 5 glasses of water. You held me. Your arms wrapped tight around my trembling body. You let my tears fall down your arms as I worried about dying. We played the waiting game, you and I.

The Breaking Point, 4:00am:

I had coaxed my blood sugar down to about 400, after a lot of insulin and water. Still not low enough. I still felt terrible. I knew my body needed fluids, more than I could give it. Finally, after you convincing me it would only make me feel better we called a cab and went to the emergency room. I pulled on some clothes and  you grabbed my bag. The cab driver sat there on his phone for several minutes gossiping until I screamed at him that I had diabetes and I needed to get to the emergency room. You smiled out of the corner of your mouth and held my hand.

The Emergency Room, 4:15am:

You stood outside the doorway as I told the check in woman my medical details, holding my bag in your hands. You peered in, making sure I was okay. You stayed outside though, a way of respecting my privacy, I assume.

I was escorted to a bed in the emergency room. I climbed onto the bed and  you came in moments later. You told me your friend was working there that night, she was one of the nurses. You had to make sure I was being taken care of, you made sure they knew of my condition. You have always been protective.

After a while someone came in to give me the IV fluids my body was craving. You watched the needle puncture my skin at the crease of my arm and enter my vein as I turned my head away, I can never watch. It makes me light headed. You watched. Like I said, very protective. The cool rush of the fluids went through my arm.

Thankfully, my blood sugar was down low enough that I didn’t need to be put on an insulin drip. We waited there together. Old episodes of The Golden Girls played on a tv in the corner of the room. You asked me how I was feeling and pulled the crusty napkin like hospital blanket up on my body as I tried to sleep in a position that felt comfortable with the IV pumping fluids into my arm.

You were expected to be at your office at work in three and a half hours. You never missed work like that. Not for a cold, or for a Ferris Bueller day. Never.  You emailed your boss, telling her where you were and that you couldn’t come in. For me.

Empty Bag, 5:30am:

Finally, the second IV fluid bag had been pumped into my body. I was finally feeling like myself. My blood sugar was back in range. The nurses came in and we arranged for discharge. Your eyes were tired but you smiled to me. You engaged with my newfound energy, even though yours was gone.

We left the hospital and went to what we declared was probably the saddest Panera Bread on earth conveniently located across the street. We are both kind of dark like that, realists. You more so than me but that’s a different story. You sat with me and watched me eat breakfast during the early hours of the morning. I sipped on a latte with a smile as this is one of those life moments that never fails to bring me joy, still having a hospital bracelet on my wrist, and I caught you staring at me and smiling too. I am certain it wasn’t what you had planned for that day, but you stayed with me. Through everything.

Reflections on April 23rd, 8:39pm:

That night was something that really changed us. It brought you into my diabetes world. You saw me fall. Fall to a place of fear, a reality that death could pull me into its cold grasp if I stop fighting. You knew I was sick, you knew I was tired, and you knew I was scared. Instead of growing weary, instead of pulling away, you held onto me. Tight. You were a pillar of support by my side on that Wednesday night in November. Thank you.

Diabetes tests you in life. Your endurance. Your patience. Your resilience. Your grace. It also tests your relationships. Whether the people you are welcoming into your world can hold on tight enough for the ride.

 

All my Love,

Maria 

Lessons of the Low and Lonely

This past January, I packed my bags full of my most essential articles of clothing (not enough socks as I later realized), a travel journal, and over three months worth of diabetes supplies and boarded a plane for Florence, Italy. I was surrounded by exclamations that I was about to experience “the opportunity of a lifetime” and that my “life will be forever changed.”  Studying abroad is a big deal. It is an even bigger deal for someone with diabetes. I spent months leading up to my trip on the phone with insurance people, both my current and past doctors, my mom, and my pharmacy. I felt like I left America in a bold attempt at looking like I had my shit together, deep down being fully aware that I had no idea what I was getting myself into.

I have fallen in love with Florence, Italy…as one does. I have never felt so at home in a place in my entire life. My heart sings with joy every time I can sit down in Caffe Notte with a cappuccino and write for this blog, or skip across Ponte Vecchio on my way to class. I sometimes feel as if I could stay here forever. As wonderful as this time has been, diabetes has also been her usual self. Following me around everywhere I go.

Being abroad, diabetes has left me feeling impossibly alone in ways that I honestly wasn’t prepared for. Although in my day to day life back home in America I am usually the only person I encounter that has diabetes, I have carefully and meticulously built up a safety net around me. I have a support system. I would spend evenings with a boyfriend who knew a great deal about diabetes from witnessing it first hand and also independent research (bless his heart). I would be at work with coworkers who I disclosed small bits of my disease with, the important details as they would experience moments where I had to step away to treat a low. I would talk about diabetes amongst my close friends in hopes to make it more present in their reality as it is so perpetual in my own life. I also keep in touch with dear camp friends who I have grown up with, my “diabesties.” Although we are spread out across the country and world right now, we have been able to find a save haven in a group chat where we can disclose details of our personal lives (sex, drugs, gossip, and school life) and countless diabetes struggles. Our secrets, heartaches, and stresses bounce around freely among unbelievably strong, diverse women that truly get it.  

Yet still, 7,025 miles away from anything familiar, I do not have that refined support system physically available to me. As they tell you, this is a major part of studying abroad. I was prepared for myself to be thrown into a new environment, surrounded by beautiful new things, a different culture, and foreign language. I was not prepared for the harsh and sudden reality that struck me once I realized that glucose tablets can not be bought at the pharmacy or supermarket. Or the fact that I could pass out on one of these little cobblestone streets due to low blood sugar and I’m not even sure how long it would take the ambulance to get to me, let alone if they understand English. Of course I am not the only person in Florence, Italy with diabetes. It just has felt like that at times.

I have a constant internal dialogue here that is ferocious and frustrating at times. All of my friends I am surrounded by are deep in the sense that we have all thrown ourselves into the unknown together, but also fresh in the sense that it has only been a few months. The type of understanding of diabetes that allows someone without diabetes to have a meaningful conversation comes after months of exposure. It has been difficult to not have many people to candidly vent to because as much as they are supportive of me because they are my friends, they do not understand my words in a wholesome way. They hear me proclaiming “I am low” or “my blood sugar is high” but they certainly do not know what these words mean on a technical level. They are understanding of the occasional need to stop for gelato due to low blood sugar and embrace these moments with reassuring smiles as their indulgence is also benefitting my health.

I am grateful for moments like this. With time, I have also befriended a local barista who has diabetes and even though our interactions are brief across our language barrier, it is heartwarming to know she exists in moments when I feel isolated within this disease. She also makes the best cappuccinos.

This journey here across my travels, from Italy, to Hungary, to the Netherlands, to Greece, has made me realize more than ever that as a person with diabetes you must be steadfast and tenacious in ways that many people will never understand. You can’t afford forgetful days. You must always be on top of your game, prepared for the worst case scenario.

Diabetes, and the anxiety that can accompany it, will be in your mind because it is inside of you. I have been working on befriending it as best as I can. Learning about it, everyday is different after all, and learning about myself as I go along. I am recognizing at what point my patience breaks, the moments where I feel fearful, and the moments where I feel confident. I do not think you can love diabetes, it is a monster at times that robs you of time and energy and has taken the life of a friend of mine. I do believe however that you can certainly love your ability to try to control it. A knight may not love the battle, but perhaps he loves knowing his armor will protect him and the feelings of victory that come from championing through the fight.

All my Love, 

Maria

Faux Doctors and Real Diabetes

One of the most exhausting parts of living with Type 1 Diabetes is dealing with the uninformed general public. Diabetes is often referred to as an “invisible illness.” This can have a double meaning, in my opinion. One of which refers to how you can not physically see diabetes happening in the body of someone experiencing it, the second meaning that diabetes is invisible to the public due to a severe lack of knowledge on what it is, who it affects, and how it is treated.

After living with diabetes for almost 11 years now, I have encountered a slew of questions and statements that I can’t help but laugh at. Some of the greatest hits include:

“Is diabetes an STD?”, “Is it because you ate too much sugar when you were a baby?”, “My dog has diabetes.”, “If you have diabetes aren’t you supposed to be fat?”, “Halle Berry had diabetes and she cured it.”, “If you eat more kale your diabetes will go away.”,”My grandpa died from diabetes.”, “Can you eat that?”, “I would never be able to stab myself with needles!”,”Ew! Blood!”,”Will you have diabetes like…forever?”, “OMG I just ate 3 donuts #diabetes” 

In middle school my hormonal heart would shatter with the weight of these words and that fact that I was so very different in this massive way from my peers. In addition to my teen angst, I felt even more misunderstood by the world around me. Even adults would question and make generalized assumptions about my health. It sometimes seems as if everyone assumes they have a doctoral degree in endocrinology. With time however, it became as Jinx Monsoon notably said, water off a duck’s back.

Jinx Monsoon, RuPaul’s Drag Race

Recently, after a subpar meal of ground beef and rice at a gentleman caller’s house, I was pressed with statements about how he was absolutely certain that my diabetes could be treated if I were on a diet and took several different vitamins to replace what my body is missing. I frankly noted what exactly insulin is and that an essential hormone can not be replaced with optional vitamins. The conversation did not progress in a healthy way, despite my efforts, and eventually my emotions got the best of me. Valuable discourse felt unachievable as I was surrounded in pools of stubborn ignorance.

What are we meant to do when we are confronted with situations like this? It is so trying on the heart and mind because as much as you are an individual, you suddenly are presented with a moment in which you are branded with something that is so much greater than just you. You are faced with an option to either be diabetes or just let the situation drift away. Both options are equally understandable, as on one hand you can be an advocate for your disease and inform the person you are interacting with about how they are loud and wrong. On the other hand, it isn’t necessarily your job to be the spokesperson for this condition all the time. After years of uphill conversations with ill informed minds perhaps you are just tired, and that is totally fine too.

In case you are faced with a situation in which you choose to be an advocate for diabetes, I have developed a helpful list of ways to handle the interaction with as much grace as possible.

Tips For Not Wanting to Die While Discussing The Truth of Your Chronic Illness

  • Pick and Choose Your Battles. It is important to ask yourself before entering a conversation if it is truly worth it to you. Will it benefit your own well being if the audience is more informed or will you end up wasting your breath on a stranger you may never see again?
  • Translate. It is easy to forget that with diabetes comes a well articulated dictionary of words and phrasing that are not always accessible to the general public. In order to successfully portray your point, use more everyday language in a meaningful way.
  • Keep a Beginner’s Mind. Although this “Diabetes is…” speech has been recited countless times within your lifetime and you may be so tired of repeating yourself, it is likely that this is the audience’s first time hearing these words. Do not let your emotional fatigue take away from the heart you wish to use to backup your story.

Our tired minds and brave spirits have traveled down this road countless times, and will for the rest of our lives most likely. Becoming an advocate for this disease requires incredible amounts of patience and grace. Even if someone is insisting you should diet away your diabetes, just know that I will always eat dessert with you and take insulin for it after. 

All my Love,

Maria

Sometimes You Have to Unplug

A lot of friends have asked me what I do with my insulin pump during sex. Diabetes is not always sexy. Having an insulin pump hooked up to an infusion site on your body does not always make you feel like you’re a goddess. All of the awkward moments of taking off your clothes (which are never as well choreographed and elegant as it appears in film) also include locating your pump and fumbling around with it. I usually keep mine tucked in my bra. Depending on when I decide to relocate my pump to somewhere else this can sometimes lead to awkward conversations such as “are you wearing a wire?!” I’m not sure if that is more of a statement on the type of people I have been with in the past or the fact that I have small breasts so my pump is kind of obvious to the touch through my bra.

Most of the time I unplug my pump during sex to prevent from getting tangled in the tubing and ripping my site out. Nothing kills the mood quite like tearing a site out and bleeding all over the bed/floor/couch/shower/person. I only leave my insulin pump plugged in if my blood sugar is high or if I am not expecting anything monumental (Hey, at least I am honest). I also unplug to prevent from a “post-workout low blood sugar.” This usually only happens if I go into the act with a fasting blood sugar and haven’t eaten in awhile.


Sex can be awkward and diabetes can add to that, especially with an unfamiliar partner. Sometimes it is hard to get into the moment when you realize underneath your clothes your body has little scars from years of needles and an infusion site. You may suddenly feel so scientific standing there in your most organic form. Honestly, we have all been there. I can assure you they could not care less about it if they are anyone worthwhile.

For those of you on the receiving end of this diabetes business, don’t worry. I mean that. Don’t worry if you touch my site. Don’t worry if I have to stop because I’m low. Yes  you’ll “always worry” if you care, but I promise if you accidentally rip my site out I will not die.

One of the things I have learned to cherish the most in long term partners is their respect of my diabetes. I appreciate when they know when to pay mind to it and when to let me feel free of it. Diabetes is such a huge part of my life all the time and it is important to take moments outside of it and lose yourself in something else.

Find peace with your site. Unplug for a little while and be free.

Diabetes may not always be sexy, but you definitely always can be.

All my Love,

                                                                     Maria 

Stop Checking Under the Table

Our society has taught us that certain things are not table talk. Things that are “yucky.” Bodily expels, guts, and blood. We were all *tisk tisked* when we tried to bring up these fascinations over our mother’s food during our childhood.

Well, blood is such a huge part of diabetes. Before writing this entry, I tried to think about exactly how many times I watch blood casually leaving my body on a daily basis and the number is probably around 10. Every single time I have to check my blood sugar I have to prick my calloused fingertips with a needle and a small drop of blood tells me all the information I need to survive the next couple hours. Captivating, but definitely not sexy.

Over the years my glucose meter went from once bravely sitting on the table next to an order of chicken tenders informing me of my preteen blood sugar levels to slowly working it’s way down to my lap. This is where I would discretely check my blood sugar in a restaurant. I had become masterful at checking inside a handbag during class, out in public, or at a friend’s house. I was able to check inside my handbag sitting at a restaurant while making it look like I am quickly and quietly looking for a lipstick. This was some attempt at adding a romantic and mysterious facade to my disease. It only takes about 8 seconds after all. Perhaps this was due to not wanting people to ask me questions about my health or if I am “doing okay.” Perhaps it was to not draw any extra attention to myself and this disease. Why though?

I have noticed the unspoken migration over the years but it wasn’t until recently that I stopped to realize there is no reason for it.

There is no reason for me to hide my diabetes. No matter if it catches the eye of the student sitting next to me in a lecture hall or makes a stranger uncomfortable at the sight of my blood in a restaurant. I have since vowed to stop checking under the table because diabetes is definitely not a secret for me. So, yes, I would like the dessert menu, and yes, my fingertip is bleeding.

All my Love,

Maria