Category Archives: Random Glucose

Influences

I was reminded recently of how much we’re influenced by our experiences. Our surroundings, the things we encounter as we go through life have a profound impact on our lives. I don’t think it’s a stretch to say that.

Genetics play a role too, I suppose. But lately, I’ve been thinking about how I’ve learned, grown, been influenced, and influenced myself, the world I live in.

Small things have been a part of helping to make me the man I am. Big things too. In many ways, influences that seem small to me now may have, in fact, have had a lot to do in how I’ve come to where I am with my diabetes. Even my diagnosis.

I guess we’ll never know for sure about the diagnosis part. But when I’ve thought the past few weeks about how I’ve managed (or tried to manage) diabetes since early 1991, both well and poorly, I’ve been blown away by how much early and current experiences have been a part of that.

I grew up shy as can be, sometimes painfully shy. That led to some bullying, and being excluded from a lot of social situations growing up. By the time I was an adult, I was still a social infant in many ways.

In later years, that led to my insistence that I’ll never count on anyone for anything. Ever. So when I was diagnosed at age 28, I didn’t look for empathy, and I believed that it was up to me to live with diabetes or not live with it. I needed to rely on me, and no one else. I didn’t even want to go to the doctor to get my prescriptions filled, and where I could get away with it, I didn’t.

That helped me in a lot of ways, because I learned how to take care of myself from the very beginning. But in many ways, I also missed out… on innovations and changes in care and a hundred other things. I didn’t even hear of an insulin pump until maybe six months before I started wearing one, years after others had started. Until then, late 2009, I was still eating off of the old exchange diet and failing miserably.

Today, me and my diabetes are doing a little better. And I’m engaged with more people, inside and outside of the diabetes community, than ever before. I’m not only wearing a pump, I’m wearing a continuous glucose monitor full time. I’ve participated in clinical trials. I’m still working on improving my dietary choices, but I’m not doing too bad on that either.

I guess what I’m saying is that we all have things that make us what we are today. But we don’t have to let those influences rule us forever. I am faaaar from perfect. But I’m different than I was, hopefully in a good way.

My focus isn’t perfection. It’s being better. For me, for the people I influence, and for those who influence me.

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What I Had to Learn About Living with Diabetes

I may not look like it today, but I have to admit that I used to be obsessive about a lot of things in my life. I mean obsessive.

Whether it was something I was trying to master for work, or while I was competing in an athletic endeavor (something I still do occasionally), I was pretty intense in trying to perfect everything I did, and criticizing myself endlessly when things didn’t go my way.

Part of the reason for that is probably the fact that I’m at the tail end of the baby boomer generation, the group of kids who all grew up being told we could be the greatest at anything we tried, as long as we beat the other guy doing it.

But then, a funny thing happened. Diabetes happened.

Diabetes is not egalitarian. It doesn’t care how hard you work at it, and it certainly doesn’t care how much you care about being healthy. It’s ready to disappoint you when you least expect it… middle of the night, on your weekend away, right at the beginning of that big presentation at work.

Even when I obsess over everything having to do with my blood sugar, sometimes diabetes won’t cooperate anyway. I can be “compliant” as hell, but the numbers won’t always reflect it. And there’s nothing I can do about that.

That’s one of the biggest things I’ve learned about living with diabetes for almost 28 years. There are no absolutes. No guarantees. Nothing is certain, except that tomorrow, I’ll still be living with diabetes, and I will still be a slave to my numbers.

Diabetes has taught me not to trade in absolutes. It’s taught me that there are no perfect days. It’s taught me that if I work harder today, I’ll still have to work harder tomorrow. And the next day. There are no rest breaks.

It hasn’t been easy. My brain is hard-wired to find a solution and implement that solution whenever possible. But through age, experience, or a combination of the two, the synapses of my brain are being re-wired to look for solutions, work on those solutions, and sometimes be okay with a less than satisfactory result.

Of course, being a slave to my numbers means I have a better chance at diabetes success from day to day. At the same time, I’ve also learned that at any given moment, I may have to remind myself that I’m just doing the best I can.

And that’s good enough.

Random Thoughts.

Lately, I’ve been living this kind of existence where really, I’m just trying to maintain some sense of happiness in what should be a happy season. Because this year has been hard, full of appointments and meetings and tasks and oh, by the way, all the crap that just keeps coming out of Washington these days.

So even though there’s been some diabetes, I’ve chosen to make diabetes less of a priority this December. That said, here are a few random thoughts, diabetes included:
 
 
I had my quarterly appointment with my endocrinologist last week, and since I’m going to have to decide at some point, we discussed pump options. I told her that because I already have the most important pieces, the most appealing thing for me to do for a while is open APS.

That did not go well. Not because she doesn’t think I could handle it. Rather, because she thinks I’d be too obsessed with it… that I would find it hard to leave alone, and it would rule my life. I found her reticence surprising, but her reasoning sound. For now, Open APS is not an option. In fact, she wouldn’t even write a script so I could get reservoirs and infusion sets to use my old Medtronic pump as a backup. I think she really wants me to make a pump decision.

In other news, I’ve been trying out a new timelapse photography app on my phone. Kind of fun to see everything moving in fast motion. I’m trying to find interesting ways to use it.

I’ve been cooking a lot this December. I really do love to cook, though I wouldn’t want to do it for a living. But there’s been a lot of comfort food.

I’m working on configuration of open enrollment on the human resources software at my company for the 22nd year in a row. Basically, I make it so people can make their benefit elections online according to their eligibility, including a somewhat complex rate structure for multiple health plans. Every single time I do this, I realize how lucky I am to have access to a pretty good health plan through my employer. If you don’t live in the USA, you probably don’t understand what I’m talking about, and I hope you never have to.

I’m currently dealing with another medical issue. I don’t know what it is yet, but I hope I find out soon. That’s all I will say about it right now. Just wanted to get it off of my chest.

The Great Spousal Unit and I went to the movie theater last week to see a special showing of the 1954 holiday classic, White Christmas. As we were walking out, I remarked that we saw only two movies in theaters all year: Black Panther (on its opening weekend), and White Christmas.

Our Holiday Open House was a big success again this year. We counted 49 attendees, new and returning. Including a neighbor and a kid from the city he’s mentoring, who we contracted for leaf cleanup in our yard. They happened to arrive just as the party was starting.

When they finished, I went out and told them they couldn’t leave without coming in and hanging out with everyone else for a while. They stayed for a couple of hours, watched the football game in the back room, met just about everyone I know, and left with agreements to clean up leaves in four more yards. One of the best stories of the season, for me and for them.
 
 
Finally, I hope you will allow me to wish you the happiest of holiday seasons. Please know that even though it can seem like it at times, you are not alone, and there are resources out there to help you if you’re feeling down. If you have trouble finding them, send me an e-mail and I will try to help you locate them.

From me to you, All The Best this holiday season.

Giving Thanks

Thursday marks another Thanksgiving Day here in the United States. A day to give thanks for all of the blessings in our lives.

If diabetes is a part of your life, you might not think you have much to be thankful for. If that’s how you feel, that’s your decision… who am I to tell you you’re wrong?

In my case, however, I choose to stop and recognize that there is much for me to be thankful for this year, including these 8 things:

1. First and foremost, I’m thankful for a job that helps pay my bills and manages a health plan that ensures I have access to the devices and drugs that help me stay alive.

2. I’d like to give thanks to those who have provided opportunities for me to expand my knowledge or expand my advocacy efforts, and even get me involved in things I haven’t done before.

I’m including The Society for Participatory Medicine, who provided a stipend for me to attend HIMSS18 this year. Thanks to Janssen, who gave me an opportunity to meet other patient advocates at HealtheVoices. Also, Diabetes Patient Advocacy Coalition, who makes it so easy to be an advocate, and allowed me to be a part of the DPAC Policy Training Meeting in September, which included my first-ever chance to advocate before lawmakers. Count also Maryland’s Secretary of Health, who, through an appointment, allowed me to serve on the state’s Advisory Council on Health and Wellness.

Thanks to Dr. Nicole Bereolos, who gave me a chance to sit on a discussion panel she led at AADE in August. That weekend included the rollout of the #LanguageMatters video from Mytonomy, which featured a number of diabetes voices, including one you may recognize. It’s been a very busy year, but a rewarding one for sure.

3. Where would I be without the Diabetes Community? Wonderful friends who are smart, funny, curious, and welcoming all at the same time. I saw diabetes friends get on a plane this year and fly across time zones to attend the funeral for a member of the tribe. Many of us got together this fall for no other reason than the fact that we missed each other and wanted to be together for a while. Thanks to everyone who was a part of these or many other wonderful moments among compatriots.

4. Along with that, I want to give thanks to our magnificent #DSMA participants throughout the year. Every Wednesday, and especially when I’ve been a moderator, they’ve made me happy and proud to facilitate the hour long Twitter discussion. For the record, I’ll be back to moderate on November 28 at 9:00 eastern time (US).

5. Thank you to other diabetes groups that help bring people together, in various ways. Diabetes Sisters, Children With Diabetes, Beyond Type 1, even JDRF… they’re all using innovative means to keep the conversation going about the things that are most important to all of us.

6. I’m giving thanks once again this year for insulin, the wonder hormone that keeps me alive every day. Thank you Banting and Best, for saving my life and the lives of millions of others.

7. I can’t let Thanksgiving come and go without giving thanks to The Great Spousal Unit and Max the Cat, who have been alternately supportive and patient throughout the year. I hope I remember to recognize my good fortune in this regard this year and every year.

8. Finally, I’m thankful to you. For reading, for following on Twitter or Facebook or Instagram, for sending requests for Champion Athlete With Diabetes medals, and so much more. You make me want to keep writing here, and I can’t thank you enough.
 
 
So with that, please allow me to wish you a Happy Thanksgiving. What are you thankful for today?

I want a reset.

I want a reset. Okay, maybe a reset isn’t possible. But I’d like to think about getting a reset on a lot of my life.
 
 
I’d like a reset on my youth. I got to do a lot of things when I was younger. I had a lot of fantastic experiences. But I also wasted a lot of my efforts on things that didn’t provide much value to my life, or to anyone else’s for that matter. I spent a lot of angst over things that I’m embarrassed to say I spent a lot of angst over.

I’d like a reset on my health. My diabetes will be hitting 28 in a few months, and if it’s all the same to you, I would rather not be living with it anymore. Same goes for high blood pressure and an annoying little autoimmune skin condition that frustrates me to no end.

I’d like a reset on health care in America. A reset on the idea of for-profit care that incentivizes caring for those with the least need for care, at the expense of those most vulnerable. I’d like a big reset on that.

How about a reset on choice? I’d like to have a reset on the idea of what I, as a person with diabetes, is allowed to choose in terms of drugs, therapy, and devices so I can live the best, longest life possible with this condition.

I’d like a reset on price for all of the above. That’s a story for a different day. Moving on…

A reset on attitudes from people who choose blame over empathy would be helpful. That’s true of all of us, I think. I’d like to think that with the exception of the frightful white nationalist movement in the USA, those attitudes are changing, even though the pace of change is slower than I would like.

Finally, I think it’s okay to consider a reset on my own commitment to kindness and empathy toward everyone. Everyone thinks they treat others with the respect and dignity they deserve. Damn few of us actually do. Regardless of where I fall on that spectrum, I always want to be better, kinder, more respectful. What’s wrong with that?
 
 
What about you? What kind of reset would you like to see incorporated into your life? What would you like to see change about health care? What would you like to change about yourself? How can we, together, help people be happier, more supported, less fearful, not judged, healthier?

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