my diabetes diagnosis story

On January 7th, 2020, I sat in a crowded hospital room. For the first time in my life, I was the one in the hospital bed. I was the center of the crowd.

The crowd had formed slowly throughout the day. Family, friends, neighbors, cousins. Everyone who heard that I had been life flighted to a different hospital, having gone into Diabetic Keto Acidosis while 7 months pregnant. 

Despite the medication and utter exhaustion, I still felt the need to control the energy of the room.

I wanted everyone to know that I was fine, that this was all so unnecessary and to please not cry. 

What I know now that I didn’t know then, is what they knew. What the crowd knew.

They knew I was dying.

Late at night after hours of tests and transfers, the hospital staff prepared me for an emergency c section. A tall doctor walked in the room, a somber look on his face. The room grew quiet among his presence and I knew exactly why.

This guy was here to bear some bad news. This was his job.

I remember little of what the doctor said. Only his thick accent and the way he didn’t attempt to sugar coat any part of it. 

My baby was at 28 weeks gestation, and his lungs were not developed enough. 

He simply stated that the chances of my child surviving the operation were low. And that we needed to prepare our expectations.

I watched the crowd crumble. My mom, falling into my aunt’s arms. My sister, sobbing silently.  

I, however, did not move. I sat in the bed, staring straight back at the doctor. 

I wanted everyone to see me this way. Stone faced. Unaffected. 

And not because I wanted to control the room by being strong.

I wanted everyone to see how angry I was. 

I felt it swirl in my chest while he looked at me, trying to gauge if I was understanding what he was saying.

I looked back at him, with zero emotion on my face and said,

“Okay.”

What did he want me to say?

That this could have been avoided if someone would have listened to me?

Nobody listened to me.

Nobody listened. 

Pregnancy was hard. But being a first time mom, I knew nothing else to expect other than hard.

Everyone told me it would be.

In the beginning, I had all the symptoms, sore breasts, frequent urination, and worst of all, nausea. 

But after my first trimester, the symptoms escalated. 

I was so thirsty. Chugging water like I had been lost in the desert for days. 

As if sleeping wasn’t hard enough, I was getting up every 25 minutes in the night to pee. 

Of course, when I brought this up to my midwife, she explained it was all normal.

¨Pregnancy is so hard!¨ they would tell me every time, no matter who was on shift. 

 I couldn’t gain weight, despite being hungry and having an appetite. The midwives gave me no understanding as to why that could be. Instead, they gave me more Unisom, assuming if I couldn’t gain weight, it was because I was too nauseous to eat.

I spent months, suffering silently, ignoring all of my body’s red flags. I didn’t want to keep calling. I was nervous to keep checking in when every time I did, I was waved off as an over dramatic first time mom. 

¨This is just pregnancy, sweetie. Some people have it easy, and some people have it hard.¨

I had heard this so many times. And while it invalidated me, it comforted me on some level. Every time alarm bells would ring from my body, I settled into the fact that women have been doing this since the beginning of time. I was just one of the unlucky women with a tougher pregnancy. But I was built to handle this pain.

Around 20 weeks, things were getting worse. I was too exhausted to move. Jackson had to help me out of bed. He had to help me put my hair in a bun. It was all I could to do make it from the bedroom to the bathroom half of the time. When leaving our apartment, we’d have to stop at the end of the hallway and wait until I caught my breath to keep going.

One day, I got myself out of the house and to the grocery store. 

In the check out line at trader joes, I called Jackson in tears.

¨I can’t see anything!” I cried out. 

While shopping, I started to notice I could barely read any of the packaging. 

I’ve always had perfect eye sight, so this caused immediate panic in my body.

I had to hold everything up to my face, and squint to read.

¨Call them right now.¨ Jack instructed me, terrified. 

I called the office and told them about my eyes.

There was no sense of urgency or concern on the other line. Just, 

“Oh, I’m sure you’re okay honey. Do you want to come in tomorrow?¨

We set up a time and I hung up, feeling defeated. Feeling hopeless.

I was 20 weeks pregnant. Only halfway through. How was I going to survive?

I sat in the parking lot after the call and googled my symptoms for the 80th time.

¨Gestational Diabetes¨  was something that had come up before, but combined with the symptoms of blurry vision, it finally stuck out to me.

After hours of researching this diagnosis, I felt a wave of relief.

There was no doubt in my mind that I had it. 

Unusual thirst. Frequent urination. Fatigue. Nausea. Blurred vision. 

This was the answer I had been looking for. 

I woke up the next day, ready for more. More answers, more support. 

I even took my little sister with me, who had been so excited to join me at an appointment. 

I’ll never forget how crushed I felt when I brought forth my research to the midwife.

¨So. Why are you so certain you have gestational diabetes?” She asked me, smiling.

¨Well, because…” I said, beginning to list the symptoms.

What happened next is seared into my memory. After suggesting the exhaustion, the thirst, the vision, the inability to gain weight, she looked at me and said,

“Those aren’t symptoms for gestational diabetes. Those are symptoms for Type 1 diabetes.”

My heart dropped for a second.

“Could I have type 1?” I asked, scared of what she’d say next.

“No, no, no.” She reassured me.

“You’re too thin.”

I asked her if she could test me anyway. She told me we had to wait until I was 28 weeks.

Over the next two months, I asked a few more times if I could get tested for GD.

Each time I was told I had to wait until 28 weeks.

A few weeks before Christmas, I was checking out at the mall and I passed out at the register. Just collapsed.

My doctors still wouldn’t test me. They continually refused to take me seriously. 

Finally, the day came. 28 weeks. I was desperate to drink the awful, sugary, syrupy drink they make you finish to test your blood sugar. 

I think the results took a few days, or maybe overnight.

All I know is on Friday, January 3rd, I get a call from the doctors office. 

The woman on the other end did seem frantic in telling me my blood sugar levels were in the high 400’s and I definitely had gestational diabetes.

I had to stop myself from saying “I know” and instead asked, “Now what?”

She rattled off a memorized script about GD and what I’d need to do moving forward. My next step was to meet with a nutritionist to come up with a plan for the rest of my pregnancy.

But it was a Friday, and Monday was a holiday. The soonest they could schedule me in was Tuesday, January 7th.

I couldn’t get in for 4 days?  That seemed odd to me.

“Um…am I gonna be okay until then?” I asked.

She assured me repeatedly that I had nothing to worry about and, would you believe it,

¨This is very normal and happens all the time.”

I barely made it til Tuesday.

I woke up on January 7th, and I immediately knew something was different. I had never experienced this level of fatigue and exhaustion.

Jackson helped me get dressed, helped me put my hair up, and went to get himself ready.

I remember laying on the bed, waiting for him to get his shoes on. When he came back for me, I told him in complete honesty,

“I think I’m dying.”

I used my remaining strength to get myself from the car to the doctors office. I cried the whole way.

At the appointment, the nutritionist gave me another rundown of gestational diabetes. Things I already knew from my many sleepless nights researching. 

She handed me pamphlets about low carb food suggestions and we read through those. Then she asked if I had any questions.

“I’m… really not okay” is all I could manage to get out.

She knew it too. I saw her face finally actually look at mine. She quickly left to grab a specialist. 

When the specialist came in the room, she looked frazzled. Her hands full of my paperwork.

Without any greetings or pleasantries, she took one look at me and said, 

“I’m 99% sure you have type 1 diabetes, and I’m 99% sure you are going into Diabetic Keto Acidosis.”

After this, is when my memory starts to get fuzzy. I do remember feeling like this specialist was an angel sent from heaven.

She put me in a wheelchair herself and pushed me outside, and across the parking lot to the ER building. 

Finally, a sense of urgency. Finally, a sense of,

“How the fuck did no one catch this?”

I got hooked up to wires, machines, catheters. Doctors were coming in and out of the room, running tests and checking in on the baby.

After about an hour, a doctor came in to tell Jack & I that I was confirmed to have type 1 diabetes, and I was in active DKA. Officially diagnosed.

I had no energy to process the magnitude of this moment, of this diagnosis. I could barely keep my head up. 

Because of my physical state, and my lack of knowledge on diabetes, I was unable to comprehend the severity of the situation. I had no idea what DKA was.

Diabetic Keto Acidosis is caused by an overload of ketones in your blood. This happens when the body doesn’t have enough insulin to use glucose, our natural source of energy. When ketones build up in the blood, they make it more acidic. This can lead to a diabetic coma or even death. I was on the brink.

I didn’t actually start to worry until the contractions came. 

Yes, contractions. At 28 weeks pregnant.

My body was so sick, it was literally forcing my baby out. 

I was going into labor.

Those few hours before I was transferred were some of the of the most physically excruciating hours I have ever endured. 

Insatiable thirst, but not allowed even a tiny sip of water. Intense contractions. No pain meds for the safety of the baby.

A catheter! If you know you know. 

The next thing I vividly remember, is overhearing nurses discussing a helicopter.

That I needed to be life flighted to another hospital for emergency c section.

I was still, completely unaware of how dire things were. But I kissed my family goodbye, and they strapped me in. 

A cool little $50,000 ride in the sky. 

The next thing in clear memory, was the crowd. 

The crowd of family and friends, crying around my hospital bed as the doctor detailed the likelihood of my baby not surviving the birth. 

I remember the anger. 

And then…I remember the dissociation.

I made a decision in that moment to detach from the idea that this baby and the hopes and dreams and visions I had of him in my head.

I tried to forget he was going to be named Seven. 

I was already prepping myself for unimaginable heartbreak. I was already trying to protect myself.

All the while, not knowing how much danger my own body was in.

I don’t remember much after that. 

I learned later how dissociation works. How at that moment, the pain was too great for my body to process. So I turned it all off.

This explains a lot of gaps in my memory.

I don’t remember when things calmed down. I don’t remember how my levels came back down, or my contractions stopping.

I only remember drifting off into sleep and waking up in the middle of the night to nurses pricking my fingers.

“Do I still need a c section?” I mumbled.

“No, sweetie. Your baby is okay. And so are you.”

I went back to sleep.

The next morning, I was told over and over again what a miracle it all was.

How as soon as my levels were stable, my labor stopped.

He was okay.

And I was too. 

Well, I was okay for about 5 minutes until a diabetes educator walked in, reminding me my entire life just changed overnight. 

Oh yeah. The diabetes. 

I was in the hospital for a week. My fingers were sore from all the pokes. 

My body was entirely swollen from all the fluids.

Every few hours, a new diabetes educator would come in for lessons.

Seems like the perfect thing after surviving a trauma like DKA. School.

I was so overwhelmed. I was still pregnant. Still had two months to go. 

Now I had to learn how to live with this illness.

I tried to pay attention while they taught me how to calculate my insulin dosages. What foods I can and can’t eat. The risks and side effects of T1D.

But none of it felt real. I am terrible at math and even worse at eating healthy. 

It all felt like a bad dream. 

Sometimes, it still does.

Three years later, and it’s still hard for me to accept that this is my life now. This is something I will have forever.

That it’s not going away.

I never felt like I had time to process the diagnosis. Or the moments that led to it. 

Seven was unexpectedly born two weeks later. (Those extra weeks in the womb ended up being crucial in his chance of survival. A true miracle.)

Immediately after 6 weeks in the NICU, the COVID pandemic swept the globe. 

I had a business to run. A family to take care of.

It always seemed like there was something more important to do than feeling my feelings around this life change.

“Dealing” with my diagnosis felt too big to tackle. I kept putting it off.

I maintained the functional aspect. I kept my pancreas running. I got comfortable at giving myself shots after a few days.

But when it came to thinking about that day, remembering it, and worst of all WRITING about it…I’d do anything in my power to avoid it. 

“Maybe next week.”

“Maybe next year.”

I had developed quite a bit of shame around my diabetes in general.

I felt shame for not advocating hard enough for my son and I.

Shame for being “sick”

Shame for the way I look. 

I often feel like I’m not smart enough for this disease. 

That I’m not strong enough for it. 

The hardest thing I’ve had to deal with since my diagnosis is feeling safe in my own body.

For months my body was screaming that something was wrong, only to be told by professionals that I was overthinking everything.

Once things went really wrong, I had no concept of a healthy baseline. For two years, I was constantly worried that I wasn’t okay.

This led to a severe panic disorder in the summer of 2021. I felt like a foreigner in my own body. For six months, I would wake up, shaking, teeth chattering, not able to breathe. I never felt safe. It would take around three hours for my nervous system to calm down.

Not being able to trust your own body is terrifying. When my blood sugar was high, I was unable to discern wether I needed insulin or emergency medical attention. When my blood sugar was low and I felt like I was about to collapse, I couldn’t tell if my body was in serious danger or if it was my anxiety manifesting as physical symptoms. 

I lost that trust and connection with my body that day. 

And it’s taken years to get it back.

Unless you or someone you love has type 1, you’ll never understand how it affects every moment of your life. 

Feeling awkward pulling out your gear at a dinner table. Feeling embarrassed when someone asks you if you should be eating that piece of candy.

People watching you eat in general. 

Accidentally giving yourself too much insulin and stuffing your face because you think you’re going to die. Feeling guilty for hours afterwards trying to get your levels back down. 

When there’s a very small window of “feeling good” and how you have to spend so much mental and physical energy to stay in that range.

How most of the time, you just feel like shit. 

The shame you feel for ever having high levels.

Waking up in the middle of the night with your heart pounding out of your chest from having a blood sugar crash.

Feeling your vision go blurry and convincing yourself you’re going blind.

Having the internet decide that you have an eating disorder when you’re doing everything you can to gain weight.

Coming to terms with the fact that it’s not going away. 

My dad has a famous quote from our childhood that I think about often.

“Face it, and embrace it.”

Facing it is only half the battle. And for so long, I’ve refused to embrace the fact that I have diabetes.

About a year ago, I decided to really apply this advice from my dad.

Time to embrace it.

The more I learn about diabetes, the less shame I feel. 

The more I accept my diagnosis, the safer I feel.

As far as my anxiety, I am now able to calm down my body and my mind with ease. 

I am constantly rebuilding that connection and listen to what it’s trying to tell me. 

Another thing that has helped, is having someone to talk to. I have an incredible support system, but it’s nice to talk to someone who knows exactly what I’m going through. I have a diabetes coach who I have been seeing for a few months. She also has type 1 and talking to her has done wonders for my confidence and mindset. She’s actually the one who encouraged me to share this blog post. (Hi Emily!)

I’ve been putting off writing this for three years now. 

So this post is a huge step towards acceptance. 

It was really difficult to return to these feelings. Memories I haven’t revisited since that day.

But I want to heal. I want to be able to talk about this experience without my voice cracking. Without wondering how it’s being perceived.

I deserve to rid myself of the shame surrounding my health. And writing this was a big part of that.

I am three years into a lifelong journey. I’m still brand new. And I’m still learning to give myself grace while figuring it out. 

Maybe I can add that to the quote. Face it, embrace it, give yourself grace for it.

Dad? What do you think?

Thank you to everyone who has supported me and my health journey so far. Thank you for all my dia-buddies who help me feel not so alone.

Thank you to everyone who read this.

You listened.

And that means more to me than anything.

Indy