Category Archives: Random Glucose

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?

Readiness realities.

I can remember when this blog was new, and I would write about anything and everything that inspired me, even a little bit, almost at the very moment that it inspired me. I would often participate in the weekly #DSMA Twitter chats and find something interesting to write about (see: My Week With Celiac).

That hasn’t happened for some time. However, last week’s chat (moderated by Chris Memering) did inspire me to think about, and share, my guidelines on emergency preparedness when it comes to diabetes.

Let’s get a couple of things out of the way here, right at the very beginning: I am not an expert at preparing for emergencies. Also, when I talk about emergencies, I’m not just talking about earthquakes or hurricanes or zombie apocalypses. You’ll want to prepare for those like you always would: plenty of extra food and water, ice, garlic and crosses and whatever else you want to have on hand just in case.

When I talk about emergencies, I’m also talking about the things we don’t always consider: specifically, medical emergencies, either our own or those affecting those close to us. I had an emergency appendectomy last year. A week and a half ago, The Great Spousal Unit took a terrible fall down a flight of stairs. What about those situations?

Some experts might disagree with these ideas of emergency preparedness. But there are two things we do that have been very helpful…

1. That diabetes stuff that I always have to put together when I travel? The extra insulin, the extra infusion sets, CGM sensors, insulin pens and pen needles, etc… I keep that at the ready every single day at home. If I have to get out of the house quickly, I can get it together in less than a minute.

I won’t be set for months with this stuff, but I should be okay for at least a couple of weeks if necessary. When I was in the hospital with a bad appendix (and later, recovering from same), I didn’t have to ask anyone to gather this and that for me. I just said, “Get the box, the insulin cooler next to it, add insulin, and bring it to me”.

2. I have all of my medical information written down. This includes the model of insulin pump I’m using (and the serial number). It includes all of the prescription drugs I take on a daily basis. It includes models of CGM sensors and infusion sets.

It also includes the names and phone numbers of my entire medical team: primary doctor, endocrinologist, etc. Even if they don’t need to be consulted in a crisis, they need to be informed.

I keep this information on my iPad at home, so it’s easily mobile if need be. But I also have it printed out, in case I can’t keep the iPad charged, it gets broken somehow, or no one thinks to try to access the information there.

Hey, I admit that I’m not the best at preparing for an emergency. These two tips may not seem like much. But they give me peace of mind, or at least one less thing to worry about when it comes to managing diabetes, and managing life, through an emergency.

Framed.

They say a picture is worth a thousand words. We should all be so lucky.

After looking at my most recent headshot (thank you Tara Polcaro), I started to think: if someone was going to write a caption under my photo, what would it say? And how would I feel about that?

Would they say I’m an advocate? I’ve been involved in a lot of diabetes advocacy over the last few years, so I think that would be okay. But… would I feel I’m the kind of advocate someone says I am? I don’t know.

Would they say I’m kind? Being kind is a big deal, especially these days. Treating someone like they matter is important. If someone would say I’m unkind, that would hurt. I would try to fix that about myself.

Would someone think I was worth knowing? Should I care if someone thought I was worth knowing? I care if you want to be friends, or if you want to talk about an issue together. If you don’t, then I guess you don’t think I’m worth knowing anyway.

It seems I have a lot more questions than answers.

I’m at a point in my life and career where I care more about substance than about recognition, more about the kind of person I am than about the accolades. I never imagined I would feel this way about things, but here I am.

I’m not one of those people who says, “Screw what anyone else thinks… it’s what I think that matters!”. Really, both opinions matter. I need to be self-examining enough to know if my heart is in the right place… vulnerable enough to ask for help when I need it… strong enough to listen when criticism is shared.

And smart enough to recognize when people are full of shit. Just thought I’d add that in.

In the end, I have to be happy with who I am; and continue working to be the kind of person I want to be in that caption.

Truth be told, I don’t really like the idea of being framed. Like my diabetes, the definition of who I am changes almost daily. I’m okay with saying my caption should change constantly. What matters is if I’m headed in the right direction, wherever that might be.

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