Every once in a while I think back to the initial days before and just after my diagnosis. Dr. Mowry correctly diagnosed me with Type 1 diabetes at the end of January, 1991. After a few days in the hospital and some quick diabetes education, I was off to handle this chronic condition on my own. This recent post made me think about that diagnosis, and mostly, about my first few years living with Type 1.
One of the first things I remember thinking about diabetes was, after they gave me my dosing instructions (something like 26 units of Novolin 70/30 insulin in the morning, 22 at night), doing the quick math to determine I was going to be injecting myself 730 times every year, and 732 during leap years. That was my wake-up call… that was the first moment I knew for sure that this was different.
The diabetes educator I met with in the hospital was the first and last diabetes educator I’ve ever met with. No real reason for that, other than no one else ever said to me, “You should go see a CDE”. So I never did.
I remember getting the “five years to a cure” pep talk while I was in the hospital. I didn’t believe it. I remember giving others (mostly my Mom and the rest of the family) this tidbit of information in a sort of sound bite fashion, mostly so they didn’t worry, and so I didn’t get their pity. I still don’t know just how to handle that from people. But deep down, I knew from the beginning that my diabetes wasn’t going away. Nobody was going to be able to repair my broken pancreas.
I did read a lot about diabetes early on, to find out as much as I could about the disease. But I didn’t really know where to look for the latest about treatments, technology, and research. So, when I learned everything I thought I could learn about diabetes in general, I stopped reading. I might have picked up a JDRF or ADA publication from time to time in my doctor’s office. But how much of that can you read while you’re waiting? And when I was newly diagnosed, it didn’t occur to me to get any of that information at home. Besides, it all seemed so clinical back then. Eat right, exercise, take your insulin. Rinse, repeat. After I read that so many times, I just mentally turned it off.
I was going through a very stressful time at my job in those first few years. In a way, this was both a blessing and a curse. A blessing in that being so involved with work (about 60 hours per week), I didn’t have time to be angry or feel sorry for myself. I just had to move from task to task… that’s all I had time for. And therein lies the curse: Diabetes took a back seat from day one. If I was alive, I thought I was doing fine. Until my next A1c result. After the result came in, I’d feel bad for a couple of days, and then it would be forgotten until the next trip to the doctor.
Making so much time for the non-diabetes part of my life also meant that I wasn’t taking time to get up to date on drugs and therapy. I started my D-education in the hospital at diagnosis, but I didn’t get a follow up on anything for another 11 years. So, eleven years after diagnosis (2002), I was still injecting the same insulin at the same time every day, in the same amount. Regardless of my diet or level of exercise, never anything different. I knew that exercise could lower my glucose, and too much food could raise it, but it never occurred to me to make adjustments to my insulin dosage as a result of either of those. No one ever told me I could or should do that. And I couldn’t understand why my A1c was always crappy. How crazy is that?
I think I really could have used a mentor at that point in my life. I’m not sure how I would have received that mythical person then, but obviously, I know now how important a mentor can be as an educator, a cheerleader, a sounding board, and someone to help talk you off the ledge when times are tough.
Every time I think about it, I’m really blown away at my utter lack of diabetes knowledge in the first decade-plus of my journey with this condition. If you’re newly diagnosed, I hope you find that mentor. I hope you stay as up-to-date as possible on the latest medicine, therapy, technology, and research. Don’t forget that compared to your day of diagnosis, you’re pretty healthy right now, and you probably feel a lot better too. Don’t ever give up. Don’t ever stop learning. If this old dog can learn new tricks 23 years after diagnosis, I know you can too.
Don’t forget to pay it forward. Someone out there is right where you were in those first few days or weeks or years. Help make their first few steps sturdier, easier, more sure. JDRF has a mentor program that will allow you to help newly diagnosed PWDs feel less alone. Of course, when you need help, don’t forget to reach out to someone who can help you navigate stubborn BGs and difficult emotions. We all need help from time to time. In the meantime, remember to enjoy the vibrant, fulfilling life you were always meant to live, even if diabetes won’t go away. You deserve it.