I don’t hate diabetes today.

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?

Random Update

I know I promised a Loop rebuild, but it hasn’t given me the “Loop is no longer available” message of doom yet, so I am milking my extra time. My Apple developer account already automatically renewed, so I’m not sure what it’s waiting for. I’m definitely beyond a year on this build. Please let me know if you understand why this happens!!! (I love learning about these things – TELL ME EVERYTHING!!)

I saw my doctor last week. He’s an incredible human. I travel an hour by air OR 7 hours by car to see him because of how he focuses on person-centered care. Person-centered care doesn’t exist with my current health insurance company. Everyone is supposed to smoosh into some pre-shaped cookie cutter, or die.

In a 1-hour visit, my doctor: (1) gave me two trigger point injections and completely resolved the tension headache I’ve been dealing with, (2) got me thinking about WHY I feel good about my diabetes right now, (3) introduced me to Afrezza inhaled insulin, (4) completed a breathing test in case insurance will need it for coverage of Afrezza, and (5) did a retinopathy check in his office.

The trigger point injections I received were lidocaine. I am so happy with the results – they worked within 5 minutes. I had been suffering with the same tension headache for over a month and this method solved everything in two injections. It’s so nice knowing what works, and that this is something I can request at urgent care so I’m not sent for a spinal tap (insert eye roll here, and see here if you don’t know what I’m referring to).

I feel good about my diabetes right now. This is going to be its own post. Come back tomorrow for a greater explanation!

Afrezza inhaled insulin is SO COOL! I was explaining how my OmniPods fail so frequently and Doc asked if I had tried “tethering,” which is using long acting insulin injections to supplement pump use (and therefore prevent Ketoacidosis). I had never heard it referred to this way, but it makes sense. Unfortunately, Lantus (the only long acting my insurance will cover) only lasts in me for about 20 hours, so I would have to take it twice a day for it to make sense. The alternate approach he offered was to use Afrezza for highs and meals to take stress off the pod’s cannula. I tried it for the first time yesterday and I absolutely LOVE it!

One downside to it is that some pharmaceutical moron decided to give it its own “unit” measurement. As a result, the inhaled insulin is dosed similar to what a U-50 insulin would be (meaning you take double the units you’d take for your meals using your U-100 insulin like Humalog or Fiasp). It works VERY quickly – like within minutes. It’s unbelievable to me watching my Dexcom line when I use it. I’m sincerely impressed. The other downside – it’s not on the OptumRx formulary, so I’m about to fight like hell (again) for coverage.

Finally, the medical assistant (who I also LOVE) did my retinopathy screening in the office. She took a photo of each eye using an iPhone with the flash on. Those photos were digitally sent to a central location, and I received the results the next day. 20 years and I’m still clear (for now)! I’ll call this a win, for sure.

What does your doctor do for you that keeps you coming back? Does your health insurance allow for patient-centered care? Tell me about it in the comments, on Twitter, or at sonjac@nevada.unr.edu.

Diabetes: Level 20

As of yesterday, I have had diabetes for 20 years.

I always encourage people to celebrate their diaversary. I always have. I think living another year with diabetes is one of the hardest things a person can accomplish. Even day to day, diabetes is just difficult. I’m impressed with people who have publicly shared their stories, struggles, and coping.

So why does 20 feel like defeat to me?

Hit me up in the comments, on twitter, or at sonjac@nevada.unr.edu. I’m interested to hear your opinions and experiences on the topic.

I don’t believe in predestination, but…

…this blog was created for a course I’m in called Personal Branding. I’m currently an Executive MBA student at University of Nevada, Reno.

I decided to go into business because I was working in casino management and thought it was my career. COVID-19 and the inhumane responses by these multi-billion-dollar corporations changed my mind, basically overnight.

I’ve always felt like I needed to work in some kind of service, apparently I just took the long way around to end up there. This blog, and the research I have done in order to write it, reinforced my decision to accept admission to the Master of Social Work program at UNR.

The diabetes online community has always been my most significant source of camaraderie. The facebook groups make me smile. My twitter feed is full of people helping each other. And now I’m making friends through my blog, and the other blogs I follow. It’s everything I could have hoped for. The wonderful, kind, and sickly humorous friends I have made made me realize that I need to work FOR them instead of for corporations.

So here’s a hat tip to Dr. Simmons. Thanks for helping me reinforce my personal goals. It’s been a pleasure!

Since I will be starting the Master of Social Work program in September, I’m absolutely going to stick with the blog. It has provided a great outlet when I’ve needed it, filled my boredom with education, and it’s given me a little motivation to get out of bed early.

Please take a look at the video I made as an assignment, but also as a welcome to the blog. The video is also available in my About tab.

And, now that you’ve seen it, I’ll let you know that I will NOT be starting anything where I have to speak for you guys. I’ve got a fear of it. This was enough for me 🙂

In the video, I spoke a bit about my background, the mission of Mind on Diabetes, and the core values I will hold when interacting with all of you.

Are any of you in college? Grad school? Anyone taken a personal branding class? Tell me! Please let me know in the comments, on Twitter, and at sonjac@nevada.unr.edu.

ALSO! Let me know what you want to read about! I’m sure I have stories I could use to create posts regarding stigma, doctors, research, diabetes camp, how to find friends with diabetes, dating with diabetes/mental health concerns, navigating ADHD, depression, and anxiety. You name it, I’ll figure out a way to provide some content, even if it means outsourcing some guest writers!

Some slapstick humor from out friends at diabetesherosquad.com!