Put Your Dead Pancreas First

We all know the management of type one diabetes is a 24/7, 365 days/year sentence handed down to us by our immune system. Our immune systems killed all our beta cells, but here we are serving the time for an injustice we did not even commit.

This has all the great plot twists of a Netflix crime drama, I tell you.

I realized so many things about myself after my divorce 7 years ago. The most glaring, and most horrendous to realize, was that I was not caring for myself. During my toxic, ten year marriage I did not hang out with friends, or take up any hobbies, or exercise, or maintain a healthy diet, or even acknowledge myself. I most certainly did not take care of my body, or the broken parts of my body.

I got by everyday sometimes not checking my blood sugar at all, just taking insulin all willy-nilly when I ate something. I took my 20 units of Lantus at 9pm and guessed my Humalog when I ate. I was happy with a number under 250. I was not in the care of an endocrinologist, as those did not exist in the world of Illinois Medicaid at that time. I saw a random doctor once a year, (s)he asked how I was, looked at my feet, and wrote me scripts for the necessary items. That was it! I was going off of my sliding scale from when I was diagnosed at age 18, in 1999. Or just the “feeling” I had about how many insulin units to take. I was not educated past what I learned in the hospital at my diagnosis, and I had no interest in learning more. Pretty sure one time I had an a1c of 11. ELEVEN!

I was too god damn sad with my life to even care.

Reflecting on my current status as a #type1warrior, I am ashamed of what I let my bad marriage do to my life, and to my health. Letting go of that pestilent relationship not only freed myself and my children to live more sane lives, it lowered my damn a1c!

Mental health is such a strong component of caring for t1d. This is an all consuming, mentally challenging, daily frustration that needs attention. Low self-esteem, feeling unconnected to your world, feeling unloved or hopeless will undoubtedly lead to “uncontrolled diabetes”. Imagine losing your ability to have satisfying sex, losing digits or limbs, going on kidney dialysis, losing your sight, or slowly dying…all because you made the choice not to care for yourself. That’s pretty lame, folks.

Choose to care for yourself and put your endocrine health first. If you are in a toxic relationship, get out of it right quick. If you are being asked by your employer to put your job ahead of your health, hire a lawyer and then get yourself a new job. If you are in a living situation with family members or roommates that is not conducive to your diabetic health, move the H out. If you are battling mental health issues that hinder your ability to care for yourself, please find a counselor to speak with. If you do not have t1d frands, search #diabadass on IG asap.

There will be hours or days when we just do not want to do this anymore. Diabetic burnout is legit. The goal is to not let it last years, my #diababes. This disease is only manageable if we manage it. Let’s get Manager of the Year, shall we?

 

 

 

The Good Ol’ Working Pancreas Days

I wonder what it’s like to just get up and go.

To walk out the door without fruit snacks and a banana, a vial of insulin and syringe, alcohol swabs, replacements for the two medical devices I wear, and a glucometer. To not ration out my medicine between the fridge at my work and the fridge in my home. To not have the same question streaming through my brain at all times: “What’s my sugar?”

Thing is, I do know what it’s like. I was diagnosed the summer I was 18 years-old so I had a hot minute of pancreatic splendor. I remember eating dinner at 10pm with my friends at sleepovers, and stopping for mochas after football games, and waking up at 10am on Saturdays but not eating a meal until 1pm. I never had a thought about the wonders of my body functioning at normal capacity. I was able to do all the things that a Type None does and I never appreciated it once. It never occurred to me.

Usually, people are appreciative of being able to walk, and talk, and hear, and see. We think of those “major” disabilities or illnesses. There are so many “little” ones that are not given the same attention as those big guys. It’s rare for someone to be thankful that they process carbohydrates at a normal capacity or can regulate their glucose stores.

It still didn’t hit me in the ICU when I woke from my coma and was told the diagnosis.  I have type one diabetes. There is no cure, only self management. I have to take a shot when I eat, and prick my finger when I eat, and sometimes eat when I’m not even hungry, and prick my finger when I don’t eat, and also takes shots when I don’t eat.

Eating. Blood. Shots. No problem, doc. I got this.

I had about 4 months of regular appointments with an endocrinologist, nutritionist, and Certified Diabetes Educator. Soon after, I moved out of my dad’s house and was left to my own devices as an 18 year-old. I was on my own for the first time and lost in all the ways that are typical. Paying utilities on time, grocery shopping, and keeping my kitchen floors clean. Add to that, I was in charge of making sure I didn’t go into a coma or die every single damn day; and my parents never checked in on me. It was the worst time of my young adult life. I was in silent shock of my diagnosis until I was 21 years-old.

It is my life now. It’s okay that my purse has to be big enough to carry all my medical shit. It’s fine that I walk around the gym with a bag containing food, and a glucometer, and my phone, and my insulin pump walkie-talkie thing. It’s my life. It’s part of my identity. You can’t have a relationship with me if you don’t know about my disease and will look out for me.

I Am A Type 1 Diabetic.

I don’t want it, though. It is the thing that is always there. It is the thing that I want most to go away. A very unwelcome guest that I have to take care of every second of my life.

I keep pushing, and ballin, and all that. I just hope one day I stop wondering what my sugar is.

It’s at a steady 158 right now. Ugh.

 

 

 

Everyone Is Looking At My Pancreas

Imagine this. You’re told that you are cute, pretty, beautiful, sexy. Nice adjectives about your physical appearance. You put on a revealing dress, form fitting, short in length. You step into your 6 inch heels and stand in front of the mirror. You smile at your reflection. This is where those broccoli smoothies and hours in the gym come in handy.

You turn to the left to make sure the dress is laying as it should and that’s when the 1986 fax machine that is attached to your arm comes into view. Alongside that, a pay phone from 1979 also sits attached to your arm. Both are painted a sparkly pink to dress them up a bit. Both make beeping sounds and have white stickers holding them in place. The stickers are frayed at the edges and a little dirty looking. The blue color on the hoodie you wore earlier has left behind a pigment on the tape.

You turn to face the mirror again thinking you should wear the fax machine and pay phone on your belly. But then the dress protrudes out and it looks like you have hernias. Perhaps your inner thigh above your knee where they can’t be seen in the dress. But then you can’t cross your legs. Plus, when you sit the dress will rise and they will be visible anyhow.

I absolutely hate wearing an Omnipod and Dexcom. I have to be aware of them at all times. Taking my purse off of my shoulder swiftly can pull them out of my skin. Taking my tops off has to be done one arm at a time and slowly. Be careful rounding corners cause they stick out of your arm a good inch. You can knock them completely out if you aren’t careful. In my mind, both of these objects are flashing lights to warn people to stay away. They do feel like a pay phone and a fax machine. They are large, boxy, and don’t seem very modern.

I stick them to my skin, allow a catheter from each device to shoot into my flesh, wear them 24/7, changing them every 3-7 days. They are not the elephants in the room. They are the disease in the room.

My boyfriend tells me all the time that he doesn’t mind them.

But I don’t believe him. I mean, why would he TELL me that he hates them. That I would look even better in a string bikini if I wasn’t a cyborg with a chronic disease. I would never say that to him if the roles were reversed. This falls under the subject matter, “Things That Are Permissive to Lie About In a Relationship”. So, I am thankful for his sweet lies to spare my feelings. I would also love to see his ass in a string bikini now that I’m talking about it.

The thing is, all I see when I get naked, when I shower, when I dress, when I am in bed with my boyfriend, when I take my coat off and my machines bleep out “Look at her! Look at her! What are these things on her arm? It’s me. Her disease!”….all I see are Omnipods and Dexcoms. I don’t see anything else on myself. I feel like they are distracting everyone. The waiter can’t concentrate, the bartender is confused, the man checking me out stops checking me out when I turn and he sees my arms, my co-workers are surprised when I’m not covered up with a blazer. 95% of my waking hours, I feel the presence of these damn machines.

The benefits of the Pod and Dex are significant. I can control my insulin levels at all times and know my BG at all times. I’m healthier than I have ever been.

I guess looking like a cyborg is a small price to pay for controlled blood sugars and living a long, healthy life. I’ll take the fax machine and pay phone along with my string bikini….and totally kick ass.

Diabetes is My Other Boyfriend

Since being out of the dating field, out of the dredge of on-line dating apps hoping to find my match, you’d think the comical events surrounding my T1 management would cease. But one would be wrong.

I’ve been trying to hide the depression and anxiety about my T1D from my boyfriend. I don’t want to “scare him off”. I’m attempting to keep the severity of the disease away from him. The high cost of my daily medication and supply needs may run him out the door. The stress of being out of said medication and supplies due to an unpaid insurance premium may push him into the arms of a boring non-cyborg with millions in her stupid bank account.

We’ve been living together for over a year. We have plans in Europe in 2019. It seems he’s in for the long haul despite my slacker pancreas.

But still…T1 is a beast and it feels horrific allowing that beast to also annoy my boyfriend/roommate/#1 lover. It’s stressful to try and eat a fruit snack, or two, while in bed at 2am. To roll over, out from his embrace, reach into the box that is next to my bedside, open that crinkly plastic as slowly as my low blood sugar will allow me, and then chew. Trying to ignore that the only sound in the entire upstairs is me eating at 2 am to avoid seizure.

Or how about getting up, three times after you have sat down to watch the movie you just bought on Amazon, because your pump pager thingy is on the kitchen counter, or your phone where you get your blood sugar readings from is in your purse, or you need to check your emails to see if your shipment of alcohol swabs and pump stickers is on the way.

My favorite is the “rushing out the door but wait my pump is almost empty and my Dex is falling off my arm” bit. Let me just get the insulin out of the fridge; the pump pods, sensors, and alcohol wipes out of my diabetes cabinet; my phone and pump pager thingy out of my handbag. Now let me fill and prep the pump, take my shirt off just one arm, tear the pod and sensor off my arm, wipe the area clean, wipe the next area clean, prime the pump, stop the sensor, insert the new sensor, start the new sensor, stick on the pod, start the new pod, recycle what I can, trash what I can’t recycle, put the medical trash in the medical trash, put my shirt the rest of the way on, make sure the pod and sensor are started and won’t fall off.

Okay, now we can go. Easy peasy.

It’s also fun to do this while driving, while in the theater, while at a five course meal. Really, it’s fun any time.

The best is having no glucose on hand and being low. Standing like a zombie in the corner while he rushes to order me a pop or get me Skittles.

Or getting up on Christmas morning to get your pump pager thingy that you left in the neighboring state on Christmas Eve and you need it to live. To live well, at least.

Or eating fruit snacks while trying to be super naked and super intimate. Just give me one minute. I’ll be right back in that position as soon as I eat this. I’ll be real fast. It’s like I’m not even dealing with a medical emergency right now in my thigh highs and stilettos.

Still sexy, right?

It is always there, this type one diabetes. It is the third wheel in my relationship. A wheel we both hate, but both take such care of. A wheel that requires much attention, even when you both want to ignore it.

I’m trying not to be anxious about my condition in my relationship, but anxiety has a way of not really going away. It has been proven time and again that he is not “annoyed” with my medical condition, or at least, he is really good at keeping the annoyance from surfacing.

I found a partner for this life. And he will fight diabetes with me, even if it means waiting for that fruit snack to kick in before we can romp around.

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I Haven’t Perished, Yet.

I have had three hypoglycemic episodes where I was on the verge of passing onto the next realm. Just three in the 18 years since my diagnosis. They were 1) falling into the refrigerator door and cutting my face when I was looking for orange juice, 2) skidding into the snowy ditch and getting my little Chevy stuck as I fumbled in the glove box for a Snickers, 3) and laying down on the kitchen floor to be woken up by my boyfriend as he made me eat fruit snacks.

All three–not so good. But in the grand scheme of what can happen to me–not so bad, either. I have never had 911 called for me, never used my glucagon, never seized. But I feel it is inevitable and it really scares me.

My blood sugar gets madly low and I still function. Just this morning I checked my sugar when my tongue felt tingly. I was at 38. I had just made my boyfriend’s coffee and kissed him happily as he left for work. “How the hell am I not dead?” is a thought I often have.

Recently, that same boyfriend told me to sit down and check my sugar. I clumsily walked down the stairs after cleaning the bathroom. I was at 30. When I stabilized, which is 70 for me, I started crying. “I am so scared I’m gonna get to zero, babe. Why can’t I feel it before it’s too late?”

He grabbed me and held me, saying he was here to make sure I never get to zero. Also, reminding me of the CGM on my arm that is here to assist me.

But the thing is, neither of those is anything to solely rely on. Even the Dexcom CGM site says to use a glucometer to confirm your glucose before treating a low or high. There have been plenty of times when the CGM is telling me I’m low but an hour later, after eating a plethora of goods, I was actually high. My boyfriend and my sister have the CGM app on their phones. They can see my glucose and get alarms when I’m low. But they can also sleep through their alarms going off, they take vacations, or turn phones off when in a meeting.

Point is, I am really fucking scared. But maybe, just maybe, I’m gonna be okay.

 

 

Skittles Off the Bathroom Floor

Of all the dating stories I have, the one where I eat Skittles off the bathroom floor of a Chicago bar is up there in entertainment value for listeners.

Getting low at the bar, (low blood sugar-hypoglycemia, impending death for lack of cellular energy) I had the option to order a soda or something. But the bottle of wine had just been opened and my glass poured. It would look super gauche to then order a Sprite. I’m a lady for god sake and this Tinder match did not yet know of my cyborg condition.

I excused myself to the bathroom, hoping the sweat I felt on my forehead was not noticeable, my CGM app blaring an alarm as I stood (CGM-continuous glucose monitor, a device I wear that sends my blood glucose to an app on my phone).

I sat on the open toilet. This bar was swank but not swank enough to have toilet seat lids. I was wearing heels and nylons and a dress that was oh, so cute. I plopped my purse on my lap, sweat now dripping down my face and ruining my perfectly styled blunt-cut bangs. I opened the Original Skittles, now paranoid I was taking too long, and then it happened.

The life saving Skittles spilled all over the floor, making sad sounds as they plopped off my vintage heels. It happened in slow motion. When my blood sugar is low, my vision gets blurry and also looks like life is happening in stop motion. Like each second is a still in front of me that blends into the next second. It feels like I can’t keep up with what is happening in front of me, even if nothing is happening.

I stared at them on the floor, head now resting on the wall as I sat on the toilet, while also feeling in my purse for more Skittles, glucose tabs, fruit snacks, whatever. Nothing. I looked at the brightly colored candies on the tile floor and was mad at them. How could they do this to me? I sat for a few seconds wondering if I should just take a nap or something. I could curl up in the corner of the stall and get a good rest, wake up totally fine. The tidal waves of hypoglycemia confusion had set in.  I pulled myself together and knew what I had to do. Kneeling on the floor in my heels, purse pressed in my lap against my chest, I ate the Skittles one by one off the bathroom floor, saving my life.

Once I could stand without looking drunk, I fixed myself in the mirror, now feeling like I had abandoned my date for 30 minutes (it was less than 5), and walked back to the bar. Miraculously, the apps were delivered! I now had complex carbs to help stabilize my glucose!

Dating is really hard. The current climate with on-line dating makes it more so. Navigating this world with type one makes it so much more difficult.

Be careful out there, my type ones looking for romance. And please carry more than one bag of Skittles.

He Wants to Kill Me!

Turns out my boyfriend wants me to slowly die a painful death while he saves humanity.

(Sound the horns, I am off the market. Online dating and nights of questioning all men has ended.)

But back to the point of this blog entry: My boyfriend wants me to die.

The other day we were discussing the world and all the horrid people in it and how the heck we would continue to survive in such a sad state of affairs. He then said, “Survival of the fittest” and I almost slapped him square on his adorable cheek.

“Survival of the fittest?!” I screeched back, “Survival of the fittest?! Not only is that a meathead mentality in 2017 but also….that means I will fucking die. Thanks a fucking lot.”

In this scenario, where the strong people make it and the weak perish, I would survive for a solid but short amount of time thanks to my disposition and swole biceps. But then….I’M A GONER. I need medication to live and food to live. Not food to live in the “eat bread every couple of days” food to live but food to live in a “if I don’t get a simple carbohydrate followed by a complex carbohydrate right now I will die and it will be sweaty and sad” food to live.

Let’s say we are in the zombie apocalypse–I, again, will not last that long. He wants to kick ass in the zombie apocalypse. Which means he, again, wants me to die. He assures me that he will make me insulin; he popped a Goog on how to do that and seems to have it all figured out.

If I am ever in a situation where I don’t have insulin and a syringe and glucose—I will die. That freaks me out sometimes. If I’m lost in the forest, I can’t survive on ants like a Type None. Hold up in a third world prison, I can’t survive on licking the floor for scraps.

There are many obstacles to having type one. Not surviving an apocalypse is just one of them. Luckily, my boyfriend will find a pig and get me some insulin. We’ll see if he delivers.