My First Diaversary

A Diaversary is an annual recognition of surviving another year as a person living with Type 1 Diabetes. On February 5, 2021, Nurse Jade Carboy called me with the results of my bloodwork. My A1C tested at 14.4, my glucose was 525 mg, and I needed to get on insulin immediately. What? (An A1C over 7 isn’t good and can be fatal. Yep, mine was more than double.)

I didn’t have any knowledge of anything related to diabetes. I didn’t know the difference between Type 1 and Type 2, (there are big differences, Type 1 is typically autoimmune related and Type 2 is typically metabolic) I didn’t have any friends or family with diabetes, and I seriously thought she was reading someone else’s chart. With a slight tremble in my hand, I nervously tried to keep up with what she was saying and made the most confusing notes on a piece of paper filled with misspelled words and several question marks. A1C??? Endocrinologist??? 

Honestly, I was in huge denial and I was admittedly completely ignorant. I’ve been vegan for most of my adult life. I have Celiac Disease so I’ve been gluten free for nearly 20 years. No soy. I work out 6 days a week. At the time, I barely drank any alcohol (I don’t drink at all anymore) and no smoking at all. So….WTF? Seriously, WTF? 

Of course, now I know that none of that mattered to my diagnosis. Proper nutrition with a fun and active lifestyle has always been my jam. I love eating healthy and I love exploring different types of physical and mental fitness from running to dancing, to yoga and strength training. That’s always going to be important to me and no matter what state your pancreas is in, retired, struggling, or fully functioning, it is always a good idea to best serve your body with the right nutrition and fitness regime that it needs to thrive. Now, I just have to incorporate, “acting as a full time pancreas” into my health regimen. Unlike other facets of my routine, I can’t take a day off from pancreasing because it actually is a matter of life or death. If I want to skip a work out, which I rarely do, but if I’d rather stay snuggled up on the couch with my bunny, then I’ll give myself a hall pass when the mood strikes. But, if I don’t feel like counting carbs, planning out the timing ahead, icing my injection spot, stabbing myself with a needle to get that magical insulin in me, wait for it to kick in, and hope my glucose stays in range, then could I die. That’s that. 

And there is so much more to it. In the land of Type 1 Diabetes, 1+1 does not always equal two. In fact, it rarely does. 1+1 usually equals purple hat every other Sunday if it’s a cloudy day except for Thursdays when the train pulls in an hour late, then 1+1 will always equal banana but only during a full moon. Yep. That is life with Type 1 Diabetes. Every. Waking. And. Sleeping. Moment. Always. I’ve learned that your emotions play a huge factor in the amount of insulin you may require at any given point in the day, which can change frequently. No two days are ever the same. Just because I took 1 unit of fast acting insulin per 10 carbs for one meal is no guarantee that my body will require the same thing for the next meal, or the next day, even if you eat the exact same thing. I’m no stranger to sticking to specific meal plans and I would fully cut all carbs out in a second if that would make this go away but alas, we need carbs to live. I definitely keep my carb intake low and I am mindful of the type of carbs that my body needs, especially on my big cardio days, but completely removing carbs from my life would invite additional health concerns to the party which I would rather not entertain. 

I’ve recently learned that bolusing for events help to keep me in range - this means that I preemptively take insulin for things like teaching a class, taking an important phone call, or before jumping on a Zoom meeting. If I don’t, I will likely “go high” with my glucose spiking well over 200 into a scary range. This is something that I just intuitively discovered and it’s made such a difference for me. But again, in the land of Type 1 Diabetes, it’s not always something you can rely on to play out accordingly every time.

To back things up a bit for the sake of context - my partner and I had moved to Portland, Oregon literally the exact same day the first stay at home order went into effect. This was at the very beginning of the Covid 19 pandemic so we were in a brand new state completely hunkering down in our new home. No problem - I was still actually recovering from a surgery that I had to have (completely unrelated to my T1D) and I didn’t mind having extra time to hang out with my bunny and piece together my new home. Moving back to the mainland from Hawai’i was quite a big endeavor. Shortly after we arrived, I started to become pretty sick, pretty fast, and I completely attributed all of my symptoms to stress. The big move, recovering from surgery, the pandemic, navigating a new professional path, missing my friends and family, being extremely isolated, and not to mention the massive global turmoil that we all endured during that time, my weight loss, my sleepless nights, the hair loss, the sadness, my brain fog … it all seemed easy enough to shrug my shoulders and blame stress. The thing is, I was stressed. Deathly stressed. My body was firing off emergency signals and I was ignoring them all until one day I couldn’t take it anymore. I’ll admit, I felt slightly embarrassed for going to see Nurse Carboy that day but I “justified” my reason for requesting an appointment because I thought something might be wrong due to the surgery that I had had months prior. My symptoms seemed silly to me but going in for a follow up for such a big surgery seemed like a “worthy” enough of a reason for me to take up her time. 

I had written down a timeline of events regarding the weight loss and all of my other symptoms and I remember thinking that I was being a little “too extra” when I shared my meals and fitness regimen with her. It was like I felt like I had to prove that I knew how to take care of myself and I probably just needed a different supplement or maybe a new vitamin. I am so grateful that she took me seriously. She was kind, she didn’t rush the appointment or dismiss any of my theories despite how off I was about everything. Nurse Jade Carboy saved my life. 

It has been quite a year. There have been times when I thought that this T1D thing isn’t a big deal, followed by collapsing, without warning, off of my treadmill and crawling to my vegan glucose gummies in my kitchen. (I now keep a bottle on my treadmill.) My partner has brought me back to life after a serious “low” when my glucose dropped down to 29 without warning and I completely lost consciousness and face planted on my living room floor. I’ve had moments of feeling completely energized with my numbers in range ready to go on a hike then a “low” will creep up on me and suddenly I’m not sure where I am or what’s going on. It’s been quite a year. 

Literally a year of highs and lows and everything in between. One year later I’ve learned to befriend my T1D, (I’ve named her Dahlia - we are stuck together for life so we may as well get acquainted.) I don’t want to fight her. I might get mad at her, scream at her, sob like a baby, and plea to her at times and maybe try to exorcise her from my body every now and again but in reality, she’s become one of my greatest teachers. 

Dahlia has taught me to listen to my body, to advocate for myself, to remember that self care is imperative for overall wellness, and most of all to be open to change and flow with what life gives you. Some days are more challenging than others and some days do get pretty dark. I now have the ability to fully embrace the fact that you can’t have dark without light, the fact that one exists at all is proof that the other one must absolutely exist too. Nothing is forever and we are constantly in flux. I might not be able to predict how Dahlia might want to dance with me today or tomorrow but I can count on everything in life, in this universe, including my mind, body, and soul will always be in flux. So, I choose to dance with Dahlia and know that she will likely step on my feet, and sometimes we might be dancing way too close to the edge of a cliff but I am determined to do my best to take the lead and dance through this illness with my best dancing shoes on my feet, and my Dexcom on my body, with my loved ones by my side for the rest of my days. Like I told my Endocrinologist during my last check in, “I have a bun to take care of. T1D is not going to get the best of me.”

Thanks to my bunny boss, my yoga practice, my diabuddies, my T1D support groups, my partner Tim, a few friends and family, and my fierce determination, I am thrilled that my A1C is 5.1 and my average glucose typically trends around 110 mg. That means I shall live another day to dance with Dahlia. It also still means that I’ll never get a day off and that just because my numbers are good today doesn’t mean that my numbers will be good tomorrow, or even tonight, but knowing to expect the unexpected helps me to make the most of this very special dance of mine.