What I Was Not Prepared For

I remember laying in my hospital bed as a nurse explained to me the proper form when giving myself an insulin shot. I remember another nurse telling me to change the lancet in my finger-poking device every once in a while. 

They told me to rotate where I give my injections to avoid scar tissue build up. They told me that anything below 70 is considered low blood sugar.

Apple juice, non-diet pop, and anything full of sugar is the key to bringing up a low. Peanut butter, cheese, meat, and most vegetables have little to no carbs in them–they're "free", as we say in this area.

I have to wait at least two and a half hours between injections. I can have up to fifteen carbs of a snack between meals. The insulin I took during the day is fast-acting, and keeps my blood sugar steady for meals. The nighttime insulin is long-acting, and it keeps my blood sugar stable while I'm sleeping.

Those are the basics, the things every endocrinologist tells every patient.

However, over the last five years I have learned quite a bit that my doctors haven't told me. I'd like to share some of those things with you today.

No one told me that I would spend all day, every day, thinking about when I'm going to eat. If I eat breakfast at 9:30, the earliest I can eat lunch is at noon, then I can have a snack a while later, eat dinner, have my snack with my lantus.

This doesn't sound like a big deal on the surface. I've never been one to eat a ton of sugar, so most of the time I don't have to worry about that.

However, when I was in high school, there were multiple times there would be treats that I couldn't have. Like when my math teacher got donuts from this amazing local place for our first hour class. Our desks were in groups of four, which meant everyone in my group asking me why I didn't get a donut.

I've never felt ashamed of my diagnosis. It's not something I can control, I don't have anything to be embarrassed about. However, back then, barely a year after I was rushed to the hospital, when someone would ask, I felt sort of singled out. Was that intentional on their part? Of course not, they didn't know.

I wasn’t prepared for the weight of my diagnosis to take as long as it did to hit me. At the time, I was numb. I gave myself my first insulin shot without blinking, when for my entire life I was afraid of getting injections and blood work done. Although, there really isn’t an alternative.

I didn’t expect to have the air sucked out of my lungs whenever I walk into a hospital. Whenever I got to get bloodwork done in my local hospital’s lab, the sterile smell takes me back to lying in a hospital bed, IVs attatched to me and machines beeping. I don’t exactly have flashbacks, but it feels like something is sitting on my chest. Dread.

Finally, I was not prepared to be my own biggest advocate. I wasn’t prepared to walk into my new doctor’s office only to have my new endocrinologist essentially ignore me when I explained how I had been taking care of myself for years. Keeping myself alive. Yes, I had (and still have) amazing support, but at the end of the day, it’s my responsibility.

I tell my story for a reason. Not because I want to be seen as inspirational, not at all. I tell my story to spread awareness, as a cautionary tale. I’ve gone into more detail in other blog posts, so I won’t here, but my symptoms were consistently overlooked, until it was almost too late. Learn the warning signs and listen to your body.

Stay safe

—Abbie