When I hate diabetes, I hate myself.
I’m pretty sure that’s all it comes down to anymore. After 20 years of living with diabetes and all the chaos that comes with it, I feel like I’ve temporarily unlocked the key to pass through diabetes depression, burnout, or whatever it’s called this week.
My doctor has a theory that diabetes is best managed by sound mental health, and I have to say I totally agree with him. He could give me all the insulin and supplies in the world, but there’s nothing to motivate me to use these tools without my own personal motivation and desire to feel healthy. I understand it is not realistic to stay positive about diabetes 24/7/365 (that would be incredibly unhealthy for most people), but it is entirely possible to grieve the bad while highlighting the good.
In fall of 2010, I was living in Washington, DC, working as an intern at JDRF, and taking classes at the University of California, Washington, D.C. campus. Looking back now, I can’t imagine it being much better, but I was unhappy. I didn’t care to take care of myself, let alone be alive. I was drinking every single day, in amounts that would rival my alcoholic father. I frequently ate without taking insulin, even though I was wearing an insulin pump. I don’t remember doing laundry, I didn’t shower enough, and a sleep schedule did not exist. I only had class one day a week, but I frequently missed it. I called out of work regularly, as well. At that time in my life, my A1C was 4% higher than I’d ever admit to anyone.
Fast forward to now.
I have a job I’m good at, but I dislike the industry I’m in. Instead of sitting in agony every day at work, I remind myself this is only temporary. I need the decent money it provides while I’m on my way to becoming who I want to be.
Because I have this job, I have access to health insurance. It’s not the best health insurance, but it keeps insulin cost below sticker price, they don’t charge for OmniPods or Dexcom, and it costs less per month than the premium on an ACA (Affordable Care Act) plan. I have a contact at corporate who helps me get approval when the conventional methods don’t work.
I have no idea what my A1C is (aside from the sensor GMI) because my doctor and I recognize that it is one of the least important numbers when it comes to managing diabetes. A1C is like a report card without any course grades listed. Here’s your GPA (A1C)! But it won’t tell you which school subjects (D management factor like basal, bolus, sensitivity, lows, etc…) you’re doing well in and which areas you could use some assistance. Overall, A1C isn’t going to change anything in the long run. At this point, we agree to A1C labs once a year, as requested by my insurance for prior authorizations (another chronic illness curse word).
CGM data is the best way (for me) to identify trends and make adjustments to factors that I have the power to change. Time in range is good, but it’s still not enough information. Using the Dexcom (or any other CGM) daily trend report, I can see that I run higher overnight.
A little background, I’m at work from 21:30 (9:30pm) to 05:30am. I tend to eat at 03:00 and 06:00. You can see the theme here…
So based on this information, and considering the frequent OmniPod failures I’ve been experiencing, we made the decision to try for the Afrezza I talked about in my last post. I currently use a 1:1 ratio of Humalog and Lyumjev in my pump (using Lyumjev alone did not work for me – far too many Pod failures and IT BURNS, but I’m still benefitting from it). The Afrezza has a total active insulin time under two hours – that has the potential to increase my time in range by more than 6 hours a day.
Hopefully the Afrezza will help me achieve that personal, baby-step goal of lowering postprandials, but if not I’m good with these numbers. I’m not in any imminent danger, I’m comfortable living on my own, and my doctor is listening to my concerns and helping ME reach MY OWN goals, even if I’m not sure exactly what those goals are.
I will still rant and rave and scram and cry about healthcare providers and insurance being careless, uninformed, and bad at business. But at the end of the day, I know what I have the power to change. Remaining angry and sad won’t alter those circumstances. So I let myself grieve what is not mine to change, then I move forward.
You are important. You deserve to set your own goals. You have the ability to change some things. You are allowed to grieve what you cannot change. And once you reach acceptance (which IS possible, even if it feels futile) it is time to move on. That doesn’t mean you can’t think about what happened or feel those emotions, it just means you can learn coping skills to redirect your mind instead of sitting and absorbing that anger.
If you’re having a hard time, please do not hesitate to reach out! You can reach out to your friends, family, online communities, therapists, doctors, a journal, an imaginary friend, or even me! Seriously. I’m not a mental health professional (yet – working on it). I am a person who wants to share love in a familiar space.
Positivity doesn’t always have to feel toxic. Try not to hate yourself. You’ve been through enough.
Hit me up in the comments, on twitter, or via email. Tell me what you think of this take on diabetes. There’s no right or wrong – we are all individuals with different needs, care plans, and goals. What keeps you happy?