The Murkiness of Being Diagnosed With Type 1 Diabetes

 

A few months from now marks my two year "diaversary." 

The words: "It's Type One diabetes... we don't know the cause...its autoimmune,"  was something I was NOT ready to hear. Or wait... I didn't even know what this meant. 

Are you sure? Maybe I am pregnant. Maybe it's pancreatitis. Maybe it's every other treatable disease/illness that Google and WebMD is telling me. Perhaps it's a tumor? Can you check again? 

Denial.

I was actually in denial for a few months. Searching relentlessly for what the heck was going on with me. There was NO way I was stuck with this for life. 

Shots? 4-5+ a day? EVERY. SINGLE. TIME. I. WANTED. FOOD? Constantly pricking my finger to gauge where my sugar levels were at? Striving for 75-100 but reality could often bring 30-300+.      OMG. This can't be happening to me...... I left the endocrinologist's office that day with my mom and just sat in the car and cried. 

Before being officially diagnosed with Type 1 Diabetes, I was initially being treated for bronchitis and other random things because my blood was saturated with sugar for months unknowingly. Finally, after 4 doctor office/ urgent care visits... my blood levels were checked. 

Awakening to many missed phone calls and voice mails from doctors.... " Your blood sugar levels are 400, please go to the ER."  

What.....?

I felt my season of being diagnosed and "learning" how to manage my sugars was similar to that being plunged into a murky sh$! show. 

The fact that the ER gave me tons of material for Type 2 diabetes and prescribed me medications for type 2 blew me away. Are these medical professionals that uninformed on this disease? Sure, I get I am not the "typical" Type 1 patient since I am in my twenties, but still.  Doctors and nurses should be well-educated on the differences because it could save a life. 

My endocrinologist was good, and I wont devalue her efforts and treatment.....but she didn't have Type 1. 

My nutritionist was good, and again, I wont devalue her efforts and data.... but she didn't have Type 1. 

Sure, I was given the tools to understand that I need X for Y to be in normal range BUT I was still very misinformed as to the science of what foods are going to be tragically difficult for you to keep this disease well managed. 

I had the science of Type 1, but the science of nutrition was left up to me. 

I have learned SO much in the past year and a half when it comes to what does what to my sugar levels. Since my pancreas produces zero insulin..... I am my pancreas 24/7. 

Being a pancreas is an interesting adventure. I have had many scary lows and many stressful highs. If I am depending just on the information that was given to me by my endo and nutritionist I would find myself on a constant roller coaster of blood sugar levels. Count your carbs, adjust your insulin, fix your lows with sugar/fast acting carbs, fix your highs with insulin. It can be a vicious cycle. . . and I feel many people still find themselves here unfortunately. 

While my sugars aren't always perfect, I believe I have gained great control of my blood sugars because of my awareness and comprehension of HOW certain foods do what to our bodies. 

While everyone should be mindful of this (autoimmune disease or not), as Type 1's, we have to be. Calorie King and My Fitness Pal are aimless tools if we don't know what foods are doing what to our bodies. 

And lastly, constantly changing meals and eating frivolously unfortunately = poor sugar control and subsequently long term health complications. 

Yes it's hard work to manage this disease..... and yes it really is a FULL TIME 24/7 job, BUT there is hope in this. And there is a sense of clarity that arrives when we understand what we are fueling our bodies with. 

While we can feel defeated or limited by this disease, we must remember that amidst the murkiness, and amidst the highs and lows, it is manageable. 

And that is what I am here for. 

To keep learning.

To offer some joy in the suffering.

And to provide nutritious and yummy food choices that ensure you have a HAPPY PANCREAS.