Year Twelve

38,022 finger pricks.

24,059 insulin injections.

314 Omnipod site changes.

91 Dexcom sensor changes.

Over $320,963.29 (before insurance) …

These are the approximate calculations for 12 years with Type 1 Diabetes...

I’m writing this on July 13th, 2021. I’ve been thinking about writing this essay for months but I’ve felt stuck –– unable to figure out how to put to paper all I’ve felt this past year –– these past 12 years. As I find myself slowly making my way back into the world after this pandemic year, I can't help but draw the parallels between how I’ve been feeling now and how I was feeling 12 years ago around the exact same time.

12 years ago today I was riddled with anxiety. My mom had made an appointment to see the pediatrician on July 14th. That meant I had to fast. My mom made us a nice dinner –- pasta, broccoli, bread and Dibs ice cream for dessert. My sister and I plopped down on the den floor and watched who knows what on the Disney Channel. Then we went to bed and prepared for the day ahead. I knew something was up but wasn’t quite sure what to expect.

July 14th my life changed in a matter of minutes. After a scary high glucose reading the pediatrician had us head to Children’s Hospital Los Angeles where we’d sit and wait and wait for the next 12 hours. A lot of it was a blur –– lots of people and questions, poking and prodding. But whenever I sit and really think about it, it feels like it was just yesterday.

I remember feeling a lot of unease and uncertainty. I remember feeling relieved to be in a place that would soon give me answers but extremely overwhelmed with the influx of information being thrown my way. I remember feeling so grateful to have my mom by my side every step of the way and to know that the rest of my family too, had my back.

Fast forward 12 years and we’re here. A year and a half into a global pandemic that completely turned our lives, our country, the world...upside down. Despite hearing talk of it in the news for several weeks, the abruptness of it all left us feeling scared and unsure of what was to come. Thanks to science and vaccines, we’re making our way back to a more familiar world but nonetheless things have changed and will forever be impacted by this virus.

Sound familiar? If you’re a diabetic or know someone who is, it just might. The survival instincts that kicked in this past year brought me right back to the same ones my family and I resorted to back when I was diagnosed. It was an all “hands on deck, let's ban together to support and love one another” situation and this year has been exactly that. 

At the end of 2019, I officially aged out of CHLA. I had overstayed my welcome and prolonged leaving because, well change can be scary. It was an emotional goodbye –– CHLA literally saved my life –– but it was time. The holidays, work and the anxiety surrounding the thought of having to find a new endocrinologist, left me putting it on the back burner. I wrapped up on a show at the end of February in 2020 and decided it was time. I found a new doctor and then...then the world shut down. So I waited. Finally after months of no end to the pandemic in sight, I set up a Zoom appointment with my new doctor. The appointment went well and my endo was so sweet. I didn’t realize till a few days later how much I would now benefit from being with an endo who treated adults. I’d gotten so comfortable at CHLA, I didn’t realize what I could gain from being able to be more involved with my own care. CHLA was great but it was often a one size fits all approach. I found that with my new endo I was able to be more active and vocal in what I knew worked and what didn't.

I believe that the anxiety that has come with this pandemic has been a little different for those of us who have a chronic illness or live with someone who does. We’ve been in survival mode before and I think for many of us this felt very close to home. I believe that a big reason why I was able to adapt so quickly to quarantine life was because years ago I was in in a similar headspace.

Being diagnosed with diabetes forced me into a new way of survival –– what used to be carefree snacking was now counting carbs and shots. What used to be a three hour playdate with friends was now full of breaks to check my glucose and a bag full of snacks and juice boxes.

It felt overwhelming and impossible at first, but eventually it got more familiar. One of the silver linings from this pandemic was the undivided attention I was able to give myself and my diabetic care. I resorted back to a lot of the basics and got back in touch with my numbers and dosages. I’ve never considered myself a bad diabetic –– there's no such thing. That being said, I was slacking in certain areas and wanted to do better for myself. I joined some online support groups and found my way into the diabetic community online. I had gotten so used to not having diabetics in my life, I didn't realize what I was missing. A sense of community –– an understanding that as much as my friends and family tried to, they would never fully understand.

This Diaversary year feels big and significant. 12 years marks more years living with diabetes than without. The farther I get from when I was diagnosed the harder it is to remember life before T1D. It’s hard to remember life before eating became a numbers game and my thoughts were consumed with all things diabetes.

However, it isn’t hard to remember feeling so tired I could barely function. It isn’t hard to remember feeling so over being in the bathroom, after frequenting it an upwards of 20 times in 24 hours. It isn’t hard to remember feeling a constant sense of dehydration. It isn’t hard to remember the feeling that something was wrong. I craved answers.

Being diagnosed with Type 1 Diabetes 12 years ago today, was one of the worst and best days of my life. I felt lost and confused but I was also relieved. Diabetes is a full time, 24/7 job I don’t get paid for but instead have to pay hundreds of thousands of dollars a year for. It’s a job with no breaks or vacations. Some days feel so overwhelming –– the only answer is a midday nap and other days are so uneventful –– sometimes I forget for just a second that my pancreas gave up on producing insulin.

Diabetes is a lifelong commitment I didn’t sign up for. It’s unpredictable and ever changing but it’s made me who I am today. Do I hope for a cure one day? Yeah, of course. But for right now, I focus on what I can control –– fighting for affordable and accessible insulin for all. Making it known that insulin manufacturers like Eli Lilly and Novo Nordisk are price gouging insulin. Making it apparent that companies like Beyond Type 1 & JRDF are supporting these manufacturers and hurting the people they claim to be supporting. My goal is to continue to educate and advocate with and for the diabetic community.

Diabetes is also the thing that has taught me the most. It’s a constant reminder to appreciate all the little things. It’s a testament to just how damn resilient and strong I know I am. It comes with a community of some seriously incredible, relentless people that make me realize I’m not alone on this journey. It’s taught me that so much in life is out of our control but we can control how we react to the curve balls thrown our way. It’s allowed me to be vulnerable and okay with asking for help. It’s what got me through this pandemic. It keeps me compassionate and forgiving. It keeps me humble and empathetic.

So...here’s to 12 years of living with a faulty pancreas. Here’s to science and doctors and all my robot parts. Here’s to forever fighting for #insulinforall. Happy 12 year Diaversary to me!! If you’d like to celebrate with me, please share this with your friends and help me spread awareness. And if you can please consider donating to T1International, a non-profit that is doing the real, hard work and helping in the fight for affordable and accessible insulin around the world.

Here’s to the highs, the lows and all the in between. And remember –– 

We. Can. Do. Hard. Things.