10 Years

10 years ago today, I was diagnosed with diabetes. 10 years is a long time to live with any chronic illness…It never goes away. It is sometimes terrifying. It is sometimes sad. It is sometimes just running in the background, unnoticed. But it’s always, always there.
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I’ve always been an avid journaler and when I was diagnosed, I wrote down everything about how I felt about it as it was happening. When I thought about living for 10 years with diabetes, I wanted to remember what it was like at the beginning, when I was first diagnosed.

I had no idea that re-reading these journals would be like re-experiencing a trauma. With more distance and more knowledge about diabetes, I now realize that I received pretty terrible medical care. I was misdiagnosed as having Type 2 Diabetes (presumably) because I was not thin. Even when it was confirmed that I actually had Type 1 Diabetes, I was treated with medications intended for Type 2 diabetes for 6 months before finally getting a semblance of proper medical care.

At that time in my life, I was pretty vulnerable. I had serious problems with body image, self-esteem, and depression.  No one took the time to explain that this wasn’t my fault. No one told me that this was not a sure-fire death sentence. No one referred me to a diabetic educator or mental health professional or even an endocrinologist.

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This is me with my roommates, just a few days before being diagnosed with diabetes. I’m the second from the left in the front.

Looking back on it all, I actually feel quite angry. I deserved so much better.

But you know what? I am surviving. I’m still here. Yes, diabetes is still a pain in the ass. Yes, I still struggle with highs and lows and sometimes guilt and shame. But diabetes doesn’t define what I can do or who I am. It’s just one part of me. In some ways, I’m grateful for it. It makes it impossible to ignore my body. It gives me opportunities to be strong and brave.

The night I got diagnosed, I watched the Chronicles of Narnia and wrote this quote in my journal:
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I don’t know what might have happened if my diagnosis and early treatment would have gone differently. Maybe I would have felt less embarrassment and shame. Maybe I would have had better-managed blood sugars for years following my diagnosis. Ultimately what might have been is not important. What is coming, on the other hand, is another matter entirely.

I’ve got this.  

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I like to think of myself as a cyborg with all my diabetes gadgets.

My Diagnosis Story

My 10-year “diaversary” (10 years since being diagnosed with diabetes) is coming up in a few days. In preparing a post for that day (stay tuned!) I decided to read through some old journals from 10 years ago.

I debated whether or not to blog about my story, but I feel like it might actually be useful to someone, someday. I hope my experience can help someone know that they are not alone, that diabetes is not their fault, and that they deserve the best medical care available.

What follows is an account of my first 6 months of having Type 1.

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2.15.2009

I am visiting my parents’ house for a long weekend away from college. I off-handedly remark that I’m annoyed about having to pee so much. My mom (who is a nurse) wonders if I might have high blood sugar. My dad (who has Type 2 Diabetes) has a glucometer. They test my blood sugar, which is off-the-charts, too high to be read by the meter. I avoid carbs for the rest of the day and go on several long walks, which brings my blood sugar down a little bit. They decide against taking me to the ER because being admitted would be expensive and time-consuming. I don’t know any better and spend the night swimming in confusion and self loathing:

[Excerpt from my journal dated 2.15.09]

Honestly, [this] all seems slightly ridiculous to me, really I feel like I’m in ship-shape… Basically, it’s about 100% guaranteed that I have diabetes.

What can I say about this? I guess my first reaction is – wow, am I really that unhealthy? I know that I am not the best person in the world at healthy living, but I didn’t think I was so bad. I guess I was wrong. I’m sort of angry at myself to be honest. I know better. Why didn’t I take care of myself? This is all my fault, I have no one else to blame.

2.16.2009

My parents take me to Urgent Care where I am (mis)diagnosed with Type 2 diabetes. They don’t even complete lab tests to see if I might have Type 1. I continue spiraling in self-loathing.

[Excerpt from my journal dated 2.16.09, right after being seen at an Urgent Care]

Well it’s official, I’m diabetic… I can’t help but feel ashamed of and disappointed in myself. I know that it is not completely my fault, but I can’t help but wish I would’ve prevented this from happening. I don’t know. I’m embarrassed, ashamed, afraid, and confused.

I don’t like feeling “diseased.” I feel tainted, freakish, abnormal. I just want to be healthy and now I feel like that will never be an option. I don’t understand one bit. Why would this be a part of my life? I know that things happen for a reason, but what possible reason could a disease have? Why, why, why?

I know I need to change my attitude about this, but I can’t seem to stop struggling…

2.17.2009

I visit my parents’ primary care provider who tells me he thinks I have an autoimmune disease and that my immune system is attacking my pancreas, causing diabetes. I am given long-acting insulin and start giving myself a shot once per day. I also start taking Metformin, a medication usually used for Type 2 diabetics. The pills make me nauseous. I am told to restrict my diet and feel I can “hardly eat anything at all.”

2.20.2009

I get the results from the blood tests, confirming that “my immune system is attacking my pancreas, causing Type 1 diabetes.”

2.23.2009

I return to my primary care provider to get a new treatment plan, since the results show that I have Type 1. He prescribes a larger dose of long-acting insulin in the morning and a smaller dose of the Metformin to get rid of the nausea. I still am not given fast-acting insulin to use with meals and am essentially following a treatment plan for Type 2 Diabetes.

2.27.2009

I see a dietician on campus to see if she can help me figure out what I can and can’t eat. I’ve kept a log for several days and she tells me I need to eat more carbs. This is confusing, but also exciting because it means my diet can be a tiny bit less restrictive. I thought I was supposed to basically avoid carbs at all costs, since they wreaked havoc on my blood sugar. What I really needed was to be able to eat carbs, but also cover those carbs with fast-acting insulin. I still had no prescription for this.

3.12.2009

I return to my primary care doctor and am told to increase the medication I’m already taking. Even though my blood sugars had been “a lot higher in the last week or so, despite my efforts to keep it under control,” I am still not prescribed fast-acting insulin. Bizarrely, the doctor tells me that most people with Type 1 diabetes have trouble having kids.

6.3.2009

I’ve been living with Type 1 for almost 4 months and I am feeling exhausted, overwhelmed, and hopeless.

[Excerpt from Diabetes Daily Forum, dated 6.3.2009]

… I’m just getting tired of it. I don’t want to deal with it anymore, you know? I know it will never ever go away… but I just don’t want it anymore. I don’t want to think about it, I don’t want to have it. I’m just exhausted by all of it…

I’m tired of feeling like I’ve got something to be ashamed of. I’m tired of everyone asking questions. I’m tired of feeling like this is somehow all my fault and that if I would have just done something, anything, different in my life before I got diagnosed, then I wouldn’t be in this mess. Some days I just want to quit…

I want to be in control of my life again, but right now I just feel like everything is so out of my control and there’s just nothing I can do about it…

I want to conquer my diabetes, but it’s not exactly conquerable if its chronic… I feel defeated… I just wish it would simply go away. That’s all.

8.12.2009

I finally start a treatment plan for Type 1 diabetes and am prescribed fast-acting insulin, so I can eat without fear of skyrocketing blood sugar. I’m also going through a period of depression and the doctor tells me that diabetics are even more likely than the general population to suffer serious depression. They offer no support, referral, or even a recommendation to see a mental health professional.

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The commentary in my journal about diabetes falls off a bit from here, making only occasional appearances. In a lot of ways, I think that was a good sign. It meant that I was finally getting proper medical care and that diabetes was starting to become a normal part of my life. It stopped being quite so constantly overwhelming an became more like the annoying background music in my day-to-day life.

2018: The Good, The Bad, and The Other

Every year around New Years, I write a “List of Good Things” in my journal. At first it’s difficult to think of anything noteworthy, but eventually, the list grows longer and I realize – Holy shit, my life is actually pretty okay. Pretty great, even.

But (obviously) life isn’t just a list of good things. There is always a list of “other” things. Boring things. Painful things. Tiring things. Nothing things. My guess is that the “other” list is at least as long as the list of good things. With that in mind, here is my [belated] list:

2018: The Good, The Bad, and The Other

  • I got married to my favorite human on the planet.
  • I saw Hamilton! (Twice! What kind of amazing world do I live in?) Also, the Hamilton soundtrack has been stuck in my head since February.
  • My first school year in a new district was HARD and EXHAUSTING and nearly did me in. I questioned everything: Do I even know how to do my job? Why is it so hard to make friends? Do all my coworkers hate me? Do I even want to be a school psychologist? Am I making any difference at all for any of these kids?
  • We discovered the glorious world of cooking classes at The Pantry. We made more delicious food than I had thought possible!
  • We bought a home that we love.
  • Two of my best friends moved out of the state in July. They’re both doing amazing things and having new adventures, but I miss them terribly.
  • I started this blog, for no one else but me. I needed to scratch the itch to write and it has been wonderfully freeing to be unapologetically me here.
  • In September, I set a goal to wear my Continuous Glucose Monitor (CGM) every day. For the most part, I’ve stuck with it, and it’s made a big difference in my diabetes management.
  • Also in September, I changed responsibilities at work to focus entirely on counseling. I know I’m qualified, but often feel like I am making it up as I go (which is terrifying). I am learning and growing and making mistakes and very slowly figuring it out.
  • I started trying to meditate. I don’t do it every day. I’m maybe only about 40% consistent, but it helps a lot with anxiety and stress and depression. It’s definitely something I want to do more of, because it makes a noticeable difference.
  • Walker and I went to Chicago for a weekend away. It was fun exploring a city I’ve never been to!
  • I found a therapist who specializes in helping people with chronic illness and who actually has Type 1 Diabetes. It has been game changing to talk with someone who understands.
  • I crossed an item off my bucket list and saw Broadway’s Lion King! It wasn’t on Broadway, but it still counts!
  • I failed at keeping in good touch with a lot of people I care about, family and friends included. In a perfect world I would talk to all of the people I love at least once per week. In reality, it’s closer to once per month, or even every other month. I’m sorry everyone!
  • I gained a bit of weight and have some complicated feelings about it. I feel frustrated and ashamed and embarrassed and a little confused.
  • I read (or listened to…) 25 books!
  • No shame: I watched a lot of TV. Including (but not limited to) the entire series of Star Trek: The Next Generation. I loved it.

 

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This quote from Doctor Who partially inspired this blog post. Doctor Who is one of my favorite TV shows of all time. If you don’t watch it, I’m sorry. I’m so, so sorry. Because it’s brilliant and has given me hope and happiness during some pretty difficult times. It’s fantastic

 [High five for anyone who caught those not-so-subtle Doctor Who references.]

Out the Top of Your Head

I’m a school psychologist. I spend a lot of my time coaching kids to have “positive self-talk” and a “growth mindset”. I’ve spent dozens of hours explaining to kids how their thoughts affect how they feel and what they do. I know thoughts have a tremendous power to determine our reality.

And yet.

For a while now the beat of my thoughts has sounded something like this:

Not enough. Not enough. Not enough.

This beat follows me almost everywhere. It’s a constant companion at work. It plays in my mind when I think about the never-ending responsibilities of adulting. It’s the background music as I deal with the daily grind of Type 1.

I know this is unhealthy. I know this doesn’t help me. At all. It turns out it’s sometimes hard to practice what you preach.

I can think of a million reasons why the “not enough” beat seems like a valid track to play on repeat. Most of those reasons probably aren’t reasonable, but more importantly, they aren’t helpful.

There’s a song on one of my frequent Spotify playlists called Graveclothes by Birtdtalker. A few lines in particular have been stuck in my head for a while…

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Thoughts you’re thinking make you
feel like you’re dead, but
you can grow a garden
out the top of your head.

In the last 6 weeks, I’ve worked really hard to change these constant thoughts. I’ve meditated daily, sometimes two or three times per day. I’ve set daily intentions and affirmations to focus my thoughts on instead of negativity. I’ve tried to give myself grace and space to fail without calling myself a failure.

And you know what?

It’s working. Sometimes. Not all the time, but it’s a start.

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Sacred

It’s no secret that I’ve been all over the map in terms of my religiosity and spirituality throughout my life. I was raised Catholic, considered myself atheist for a couple of years in high school, and joined the Mormon church during my freshman year of college. I was Mormon through all of my college years, even serving as missionary in Texas for 18 months between my junior and senior years. By the time I was 24, I found that the scale had tipped. The church was doing more harm than good in my life, so I did the only thing I could do. I left.

 

Where does that leave me now?

My first answer is that I don’t really know… and I’m okay with that.

 

But, my second answer is…

I believe there is not one “truth with a capital T”, but many. I believe there is no such thing as one-size-fits-all. I believe that people should seek out what works for them.

I am learning that all things can be sacred, if you want them to be. To be clear, when I say sacred, I don’t mean god-like, or even something that should be worshipped. To me, if something is sacred, it is important enough to take seriously. Important enough to think deeply about. Important enough to seek out.

The more we hold things sacred, the more they give back to us. I think I’ve been surprised to learn that I don’t need religion for that learning and growth to occur.

 

To me, these things are sacred…

 

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Time spent with my husband

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Quality time with loved ones

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Caring for my dog, Finn

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The smell of rain… Can imagine it from this picture?

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Books…

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… especially Harry Potter

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Baking

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My collection of personal journals

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My body

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Nature

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Childhood

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Quiet

What do you hold sacred? What does it bring to your life?

 

Shout-out to the wonderful podcast Harry Potter and the Sacred Text for helping me stretch my thinking about what it means to hold something as sacred. 

A Girl With a Body

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Me, age 1

 

I’ve believed I was fat for as long as I can remember. I think I was 6 the first time I set a goal to “be able to wear a bikini” like the girls I saw in the catalogs. I cannot remember a time when I didn’t look at a picture of myself and think, “God, I look so gross.” I grew up full of self-hatred and guilt and shame about my body.

 

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Me, age 10

 

Now I feel confused when I look back at photos of myself growing up, or even photos from 5 years ago. I wasn’t fat. I was just a girl with a body. And now I’m just a woman with a body. Yes, I have fat. Maybe more than others. But that is not who I am nor is it what defines my body.

 

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My cousin and I, about age 16. I’m on the right.

 

My feelings about this are so complicated. It’s quite hard to write about. I feel so angry at the culture that was designed to make me hate my body and sad for the tiny human that grew up full of shame for the body that simply made me human. And if I’m honest, I still feel a lot of shame about my body.

 

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Me, Age 25 (2013) I remember looking at this picture and feeling completely disgusted by it. Now I look at it and wonder why on earth I would have felt that way. Why did I not feel proud that I had just CLIMBED A FUCKING MOUNTAIN?

 

It is so important that we heal our relationships with our bodies as adults so that our children do not inherit body shame the way we have inherited it.

 

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Me , on my wedding day (2018, Age 28).
When I first looked at the pictures of my wedding day, I had to work SO HARD to focus on the joy that had been captured and not what I felt was shameful about my body.

 

What if we all felt joy about our bodies, rather than shame? How would that change the world? We have so much work to do to begin healing.

 

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Voice

I remember wanting to be an author from a very young age. My first book was called “Snow, snow everywhere.” It was winter in Utah and presumably I looked out the window, saw snow on the ground and just went for it. Inspired by the repetitive texts of Hooked on Phonics, I wrote something like this:

“Snow on the grass. Snow on the swings. Snow on the house. Snow, snow, everywhere!”

Apparently, it was lost on me that my last name was Snow and I could have done some clever word play with a book exclusively about snow. No wonder it was never published.

Next came the journals. I started and never finished several in elementary school, though most of those only have a few pages in the front with writing. I was never a consistent journal keeper until 8th grade when I started writing about all the shit that hits the fan during the years I refer to as the universally smelly armpit of childhood. Since then, I’ve probably fill up about a dozen journals.

I’ve also tried to blog before. One was called “The Epitome of Possibility” which was supposed to chronicle my “adventures” as a young adult. Since I generally feel like a boring human, I never had many adventures to document. It didn’t take long for the possibility to peter out. I also attempted to keep a “weight loss” blog in the name of personal accountability. Ha! That also lasted for about a month, only slightly shorter in duration than my diet.

So, when recently I started getting an itch to write and thought about a blog, my instinct was to doubt. I’ve been there, I’ve tried and failed at that. But I kept thinking about it.

What if I had a diabetes blog? A school psychology blog? A body positive blog? A personal blog? A baking blog? A blog about my dog?

I greeted each of these idea with a “No, nope, definitely not.” Mostly, I told myself I could not write about these things because I was not good enough at any of them. Blogs are for people who know what they’re talking about, I thought. Not you.

And then this idea came.

What if I had a blog about adulting?

Okay, this is not a novel idea. There is literally an entire BOOK titled Adulting. Yes, I’ve read it and I own it… wait, so maybe it is a “NOVEL” idea…? Get it?

Anyway, surely there are hundreds of internet blogs with this theme. But why not one more? Because adulting is all of those other ideas wrapped into one ambiguous catch phrase. Which gives me the freedom to write about anything I want.

Adulting is…

  • Dealing with chronic illness and confronting your mortality.
  • Having a job that you might love, but maybe also hate
  • Taking care of a lot of boring shit even when you don’t want to
  • Having a dog that you treat as your child.
  • Maybe someday also having a child…?
  • Trying to have hobbies, even though you feel too busy
  • Working on making peace with your body
  • Confronting mental illness head on.
  • Making room in your life for the people you love
  • Trying to be well.
  • Failing. Often.

The truth is, I don’t think there are enough words on the internet about how FUCKING HARD it is just to be a functioning person, but more than that, how often we fail at that goal.

And that’s the voice I want to bring to the world. That adulting is hard. And often I fail. And that’s okay.

Truthfully, on day 1 as I begin writing this blog, I don’t really care if anyone reads these words. I am here because I have something to say. I am here to find my voice. I am here to fulfill my childhood dream of being a writer. I don’t need others to read my words to accomplish any of that.