I could never be one of those people!
You know, the ones who leap out of airplanes and climb sheer cliffs. Don’t get me wrong something in me would like to be like that, but I don’t think it’s in my DNA. My first roller coaster ride was a horror show and I swore ‘never again’. I’ve never considered myself a risk taker until I was diagnosed with type 1 diabetes.
Living with LADA type 1 (latent auto immune diabetes in adults) means that I most likely had the genetic markers from birth and that something triggered the onset. Once it was triggered it slowly progressed until it showed up in a random blood test when I was 42. Because my pancreas was still functioning (albeit with less efficacy), the doctor and I agreed that I could try to manage it without medication for as long as possible.
I think he humored me more than he should have because in retrospect I could have started insulin therapy sooner. Back then I wasn’t interested in knowing more about my condition. I didn’t understand that exogenous insulin would have preserved what little beta cell function I had left. So instead of starting with a low dose of long acting Insulin I starved myself, climbed up hills and pretended I didn’t have diabetes.
6 years later with an A1c of 10.7 my doctor insisted I start insulin.
I was absolutely convinced that insulin would poison me, make me sick or at the very least inconvenience my life. You have to try and understand. I never take pills, not even vitamins. The doctor asked me to be brave. He assured me I would feel so much better with insulin. I felt encouraged but I couldn’t shake my fear.
So naturally, when I took my first injection of insulin I was terrified.
When the needle went in it was painless. Not only that, I felt completely normal. I couldn’t even tell that there was a synthesized hormone flowing through my blood. I actually skipped back to the car from the doctor’s office singing, “I did it I did it, nana nee boo boo… “
It took about 6 months for my levels to stabilize. It wasn’t long before I settled into a routine. I bought a little Japanese printed case for my Lantus pen and felt very stylish as I whipped it out, cracked open a needle and dialed up my dose at 9 pm. I had a few hiccups when I would hit a small blood vessel or land in a fatty deposit. But overall the medication went in, did its job and I settled into a predictable and safe routine.
But predictability and routine are not the best words to describe life with diabetes.
Two years later and quite a few doctors and CDE visits later, I feel like I have one foot in the camp of “honeymoon phase” and the other in “you need more insulin cause your beta cells are tanking”.
I know I’m still honeymooning when I monitor my levels and they go lower in the first half hour after eating. I know my beta cells are at half mast when I hit the 2-hour mark and my numbers spike. The medical advice to deal with the ups and downs is to split my long acting dose. After a month of playing with ratios and lots of back and forth emails with my CDE I’m still not seeing much of a difference.
My husband tells me it’s good to be frustrated. He says the biggest breakthroughs always happen just after the storm. He also acknowledges my fears and makes an effort to come with me to all my doctor’s appointments, listens when I talk about changing my doses and encourages me to be brave.
But as much as I want to be a force of positivity, the truth is life with diabetes is tough. I get disappointed and sometimes all the yoga, meditation and upbeat blogging in the world can’t change the facts. Diabetes bites and I hate rollercoasters!
So do I have some sage advice for dealing with fear and facing unpredictability? hmmm... not really... The jury is still out. What I can share is that writing out my feelings has and does help me navigate the unchartered waters of a life with diabetes.