Category Archives: Random Glucose

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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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.

Apparitions and Optimism.

You know, if I were to describe a condition that’s as emotionally charged as it is physically challenging, I don’t know if I could describe one that fits the bill more than diabetes.

Our blood sugar can go from to perfectly annoying to perfectly comfortable to perfectly fearful in the span of a single day. We can do nothing we’re told to do to take care of ourselves and wind up with zero complications. We can do everything we’re told to do to take care of ourselves and wind up with multiple complications. Yes, we think about these things almost daily.

So we hope.

We dream of the day when we won’t have to worry about our poorly or totally non-functioning beta cells. Parents of kids living with diabetes dream of the day when they won’t have to check to see if their child is still alive in the middle of the night.

We’ve seen a number of promising products talked about on websites, in podcasts, and over various forms of social media. But most of those products never make it in front of patients.

Many don’t make it simply because they’re bad ideas. Others don’t make it because they’re not any better than the products they’re aiming to replace. Still others fail because the laws of science just won’t allow for the inventor’s dream to become a reality.

Some of the drugs and devices we get excited about do make it to market. But then they fail anyway. Again, because they’re a bad product, they’re not much of an improvement over existing options, or the company that produces the product just can’t make enough money from it.

When I think about all of the drugs and devices that don’t make it, inside and outside of diabetes, I often wonder why anyone even keeps trying with this stuff. Why do you try to develop a new insulin if it’s not going to be anything more than another insulin? Why try to come up with a new way to measure glucose in the body when only a few ways have ever proven to be successful so far?

The diabetes landscape, and the health care landscape in general, is a continuing exercise in finding apparitions on the desert horizon and waiting to see if they turn out to be a mirage. Yet, the overwhelming majority of us continue to hope as well. Our optimism may take a hit now and then, but it still remains as part of the health care landscape.

Why is that?

Well, to begin with… in many ways, optimism is all we have. It’s okay to despair now and then, but all you’re left with at the end of despair is more despair. When you have optimism, even if your optimism takes a hit today, tomorrow you still have optimism to go on.

That’s why I think people still go out and raise money for JDRF even though more people live with Type 1 diabetes today than ever before. It’s why brave people at the U.S. Food and Drug Administration worked to make the pathway to approval for new drugs and devices better and more transparent. I even think there may be people at companies working on products because they truly care about making life better, not to mention longer, for all of us living with diabetes.

I’ll be honest… my optimism has waned a great deal in the past two years. But I’m encouraged by the fact that people around me aren’t giving up. And if they won’t stop grasping for something better, I won’t either.

Here’s hoping that today’s apparition becomes tomorrow’s validation of optimism for everyone living with diabetes.

8 Things: Wordplay.


I’m a fan of words. Their spellings, their meanings. Learning to live with diabetes is like learning an entirely new language.

Here’s what I mean by that, using 8 examples:
 
 
1. Diabetus
I always hated when people said “diabetus” instead of “diabetes”. It’s the last two syllables… “beat us”. I don’t like the idea of living with a chronic condition that has that kind of language in its very name.

2. Medical Devices
There are more medical devices helping us to succeed with diabetes than ever before. Some people name their Dexcom Dex, or their pump some other name. If you’re someone using an Omnipod, do you call yourself a Podder? Are you Podding? I can tell you that I am definitely not Vibeing…

3. Co-morbidities
I don’t know about you, but I don’t even want one morbidity, let alone two or more. I might settle for 1/2 a morbidity, but that’s all. No more. I can only accept so much. I wonder if this is that bargaining part of bargaining, denial anger, depression, and acceptance we hear about?

4. Target range
To be honest, it would be a lot easier to hit the target if the target didn’t move constantly throughout the day. That’s the way it is with diabetes, every day. This is a term I’d love to find a replacement for.

5. Basal
When I wanted to begin on an insulin pump, I must admit that I didn’t even know what a basal or a bolus was. No endocrinologist I ever saw up to that point described dosing insulin in this way. Once my current endo educated me, I had trouble for a week or two remembering which was the basal and which was the bolus. So I tried to think of basal as the herb… you know, basil. I imagined an herb leaf every time I logged in what my basal rate was for the day. Don’t knock it… it worked.

6. Bolus
I don’t really have much to say about bolusing, except that I get ticked off every time autocorrect changes it to “blousing”.

7. Advocacy
Like many people, I used to think that advocacy was too big and too difficult for someone like me. The truth is that advocacy is easier than you think, it can take place in many forms, and it usually has a positive effect on both the subject and the practitioner of said advocacy. So let your advocacy loose… you’ve got a lot to give.

8. Lancet
Another word I don’t like. Probably because it has elements of onomatopoeia to it. In other words, the word itself sounds too much like what it does, which is lance the skin to get blood for a glucose test. I wouldn’t mind the onomatopoeiac nature of it so much if it were something a little nicer.
 
 
And there you have it… eight diabetes words, and eight ways of looking at them. I hope your weekend is fabulous. Talk to you next week!

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