My Mad World

When I was a teenager I loved the movie Donnie Darko, especially it's theme song--Mad World.  I'd sit and listen to that song over and over again, marinating in my own teenage angst, sure that this song had perfectly captured my misunderstood life.

All around me are familiar faces
Worn out places, worn out faces
Bright and early for the daily races
Going nowhere, going nowhere

Their tears are filling up their glasses
No expression, no expression
Hide my head I wanna drown my sorrow
No tomorrow, no tomorrow

And I find it kind of funny
I find it kind of sad
The dreams in which I'm dying are the best I've ever had
I find it hard to tell you,
I find it hard to take
When people run in circles it's a very, very
Mad world, mad world

 

 Years later, I'm sure of it. Except now I'm not talking about teenage angst and brooding. Now it describes something wholly other.

 

Three years ago I started to feel funny. My head hurt, my tiny bladder got even tinier, and any time I ate, I felt like I was running through a fog. I went from doctor to doctor trying to figure out what was going wrong with my body. Most just looked at my weight and said, "lose it." Almost no doctor took me seriously, thinking my symptoms were all in my head, or attributing them to the fact that I was overweight. 

 

Let me step back for a minute. I've had health issues since I can remember. When I was three years old, I was growing too fast and I was taken to my very first endocrinologist to test my adrenals. When I was a teen, me period went mysteriously missing and became almost nonexistant, and I started gaining weight even though I wasn't overeating. As a young 20 something, I was diagnosed with severe endometriosis, Hashimotos, and what they thought was pre-diabetes (type 2). My body had always betrayed me and I never felt quite normal. 

 

Back to my three year search....it ended quite antithetically with me giving up. Nobody was listening to the fact that I thought something was wrong. It was the most helpless I'd ever felt and I didn't know how else to assert myself, so I stopped. Last year I had some route blood panels done by HDL Labs, a place that partnered with my doctors office, where one of my best friends was a PA. The results came back and even then, nothing was terribly wrong, or so they'd told me. Finally in exhaustion I sat down with a woman I'd met at my church who was a nutritionist with this company, and she immediately gasped at my results...

 

"Uh, did you know that you're a type one diabetic?"

 

My vision went black. What? How many hundreds of doctors, including my most recent one, had missed that it was diabetes and not only that, but type 1 (the kind kids get!) She pointed to my high fasting glucose and HBA1c results, as well as my astronomical Anti-Gad results. She said I was lucky I hadn't gone DKA in a hospital. She saved my life that day. 

 

Immediately I found an endo. The first one was a disaster and wouldn't listen to me...sure that my tests were wrong. So, I got online and found a diabetic specialist who told me it was the highest Anti-GAD result she'd ever seen and that in a few months, I probably would have been hospitalized.  She listened, and even knew all the research behind Adult Type 1 diagnosis, which I'd been consuming in the weeks since that fatal meeting with my sweet nutritionist friend. 

It wasn't long before I was on a pump and a CGM, seeing my endo and a Diabetic Educator (who herself had type 1) monthly. 

 

And now, I'm here, in this unfamiliar world of IC rations, carb counting, and other terms that I'm learning to use fluently. And that song rings true more than ever....type 1 diabetes is my mad world, and I'm still exploring it, much like Alice in Wonderland. I'm like a toddler, finding my legs on wobbly and unfamiliar ground, trying my very best to hold it stable. 

Down the rabbit hole I go!