Category Archives: DSMA Blog Carnival

October DSMA Blog Carnival: What’s easy about living with your type?

The October DSMA Blog Carnival topic is easy to answer, but as you can probably guess, the premise of the question goes a lot deeper:
 
 
Type 1, Type 2, LADA, Gestational, diabetes brought on by surgery . . . . the list of types of diabetes goes on. Each type may have differences, but ultimately they are all diabetes. When we think about it, there is a whole lot that all types have in common. However, that doesn’t mean we can’t give credit for some differences too. So let’s look back to our “Breaking down the barriers between types” chat on September 10th and discuss . . . . .

Anything easy about living with your type of diabetes that isn’t easy for another type?
 
 
I remember this question (I moderated this chat, and I still have my notes). The idea behind asking the question was that I wanted to ask people to acknowledge that there may be something that helps them manage their diabetes, that maybe another Person With Diabetes doesn’t have at their disposal.

The easy answer for this Type 1 is that I can take insulin for anything I may eat, at any time of day. That flexibility is something the vast majority of Type 2s, especially, do not have. I’m not going to get into whether Type 1 is easier than Type 2, or easier than any other type of diabetes. The fact is, all diabetes requires a lot of work. But if I acknowledge that some part of diabetes may be slightly easier for my type, I’m recognizing that that’s a part of diabetes that is more difficult for another type. In making this admission, I’m saying to my fellow Type 2s, LADAs, Gestationals, etc… I wish you had it as easy as me.

As I recall, there were one or two Type 2s who mentioned how taking insulin was something that seemed more difficult to them compared to how they manage their day-to-day life with diabetes. Isn’t it interesting how we can think about the same things in different ways?

I also remember asking this question from an educational perspective. I’m intensely curious about nearly everything, and I wanted to see how other people viewed their diabetes versus another type. I wondered how they might consider having to manage their diabetes a different way. Most of the Type 1s participating in the chat that evening answered the same as I did. I found it fascinating that people considered insulin an easy thing for them, even though it meant taking injections or having an insulin pump attached to them 24 hours per day. It’s all in how you look at it, I guess.

In the final analysis, when the word “diabetes” is part of your diagnosis, it doesn’t matter what word (or words) preclude it. You’re dealing with something serious and challenging on a daily basis. The best part was the outpouring of support and understanding for all types during the chat that night. It goes without saying, but I’ll say it anyway: A diabetes diagnosis automatically makes you eligible for as much encouragement and support as the Diabetes Community can muster. As a community, we are stronger and capable of much more when we welcome and support all people, of all types, living with diabetes.
 
 
This post is my October entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetescaf.org/2014/10/october-dsma-blog-carnival-4
 
 
 

September DSMA Blog Carnival: Can I get a copy of those notes?

This month’s DSMA Blog Carnival topic goes back to the August 20th Twitter chat, asking a question that I have a difficult time answering:
 
 
Do you request a copy of your medical notes? If so, how often? If not, why?
 
 
I hate to show my ridiculous ignorance on this subject, but the answer is no.

I have never asked for a copy of my medical notes. Ever. I’ve asked for a copy of prescriptions. My endocrinologist sends them in directly to my prescription provider, so if I didn’t ask for a copy, I wouldn’t have a record of what I’ve been prescribed.

But other than the prescriptions, I’ve pretty much let my doctor, nurse practitioner, etc. take the notes and keep them to themselves. To be honest, I’ve never thought about asking for the notes before. It makes sense. I’d like to know what my file looks like. I’d like to know if they make a mistake in a diagnosis or a therapy or a prescription. However, right now, my only reason for asking for a copy of my medical notes is to satisfy my own curiosity.

But the question does make me think of something that’s been at the forefront of my mind lately. I need to start putting together a file full of notes of my own.

I got this idea from a co-worker, who showed me the tablet he uses on a daily basis. On it, he has his elderly mother’s critical medical information. Information like doctor names, addresses, and phone numbers. All of her doctors. If her general practitioner tells her she needs to make an appointment with her podiatrist, he just pulls up the information from the tablet and makes the call right away. He’s also got data on prescriptions, their strength, and how often they need to be taken. This helps when a doctor prescribes one thing, then another doctor prescribes something else that might interact badly with what she’s already taking. If she suddenly finds herself in the emergency room, he has all of her information in one easy-to-read place.

I realize something like this isn’t always well received by medical professionals, but I also know that all of my data is in separate places right now. And having all of my information in one place can’t hurt. I also know that if I were to find myself in a situation where I couldn’t speak for myself, my spouse would want that information at her fingertips. There’s the chance that it could get hacked and stolen and used for nefarious purposes. But I think the benefits of having such a cache of information on an easily-accessible platform would outweigh any potential risks.

So there you have it… A very meek “No” to our question this month. But, as always, the Blog Carnival topic has me thinking about how to better manage my diabetes. And that can only yield positive results in the future.

This post is my September entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetescaf.org/2014/09/september-dsma-blog-carnival-4/
 
 
 

August #DSMA Blog Carnival: Got any ideas?

This month’s DSMA Blog Carnival topic asks us to do a little thinking. Ready?

Last month, on July 21st, the DSMA Wednesday evening twitter chat celebrated its 4th anniversary! We’ve talked about a lot of diabetes-related topics, but there always seems to be more to discuss. With that in mind, let’s look back to our chat from July 16th and give some DSMA feedback. We’d like to know…
 
 
What topics are you interested in discussing during DSMA?

I’m interested in exploring what we don’t know about diabetes. Related topic: What I discovered that I hadn’t known before. I’ve lived with diabetes for 23 years. But you know what? I’ve learned a lot just in the past year. I’ve learned about new insulin pumps (still haven’t made a decision). I’ve learned a little about how algorithms driving an artificial pancreas system work. I’ve learned that medications designed with Type 2s in mind sometimes work well for Type 1s too, and vice versa.

And speaking of that…

What are two topics that you wished we talked more about?

Topic 1: Breaking down the barriers between Types.

We have more in common than we think. Let’s talk about what those commonalities are! Here are some sample questions:

– What trait does your type have that another type has too?
– What about your type makes living with diabetes difficult? (not more difficult—just difficult)
– What one thing does your type do every day that other types do?
– What’s easy about living with your type that isn’t easy about living with another type?
– If someone not living with your type were having a bad day, what would you tell them?

Topic 2: Diabetes Inspiration.

We’ve all been down into the abyss of diabetes burnout, shame, and stigma; most of us have found the inspiration to climb back up again. What inspires you? Sample questions:

– When was your last bad diabetes day?
– When was your last good diabetes day?
– Doing _____ always makes me feel better
– True or False: Having a goal always keeps me motivated to do my best
– Name a person, place, or thing that inspires you
– My advice to anyone feeling down is ________
 
 
The great thing about the weekly #DSMA chats is that this horde of people with a shared condition and their unique-to-the-patient perspective on it gets one hour every week to meet and greet, share triumphs and despairs, and interact with each other in a way that just doesn’t happen anywhere else. It’s a source of learning, camaraderie, and inspiration crammed into one little hour. And I wouldn’t miss it for the world. Talk to you Wednesday night!
 
 
This post is my July entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetescaf.org/2014/08/august-dsma-blog-carnival-4/
 
 
 

July #DSMA Blog Carnival: What would YOU change about diabetes?

The July blog carnival topic is a simple, yet interesting one. I could take this in many directions:

We usually talk about how we deal with different aspects of diabetes, or things that would help us deal with those aspects. This month let’s change things up a bit. We’re going to revisit a question from the Open Chat on June 18th and come up with something about diabetes to change. That’s right, we want to know . . . .

If you could change one thing about diabetes, (besides not having it), what would you change? Why?
 
 
I’m going to answer this a little differently from what you might expect. What would I change?

I would make it so no child would ever be diagnosed with diabetes.

I don’t have any kids, but I always wanted one or two of my own. I know many D-parents will scoff at this, but I honestly don’t know how I would deal with a child’s diagnosis. I know, ultimately, you do what you have to do for your children. That’s the way it should be. But man… even today, I just ache every time I read about another kid added to our little club. No child should ever have to face my kind of life so early on in their own development.

And what about the parents? I’m really just guessing here, but I’ll bet that something like a child’s diabetes affects the parents way more than they ever let on. Sending their child off to school or camp without knowing how their day will turn out. Communicating with the insurance company to get durable medical or prescriptions straightened out. Setting the alarm for the middle of the night so they can get up and check their kid (or kids), every single night for as many nights, weeks, months, and years as it takes. No parent should ever have to face this kind of burden.

And these are the problems of someone who has access to care and insulin and the latest medical devices, which, as we know, isn’t always the case.

I was lucky enough to be diagnosed Type 1 as an adult. By the time I was diagnosed, I had my own job and my own insurance. I had lots to learn and a lot of work to do, but at least I had a bit of a head start compared to the children who live with diabetes. Kids and Parents are blind-sided by this kind of news– at a time when a child is growing, learning, experiencing all the joys of life, they now have to add fingersticks and carb counting and bolus calculations and infusion set changes. There is nothing that’s right or fair about that.

So if I could, if I couldn’t eradicate it entirely, I would make it so parents would never have to hear that their child has been diagnosed with diabetes.

Unfortunately, I can’t do that. But… Do you know what I can do? I can help educate people. I can speak out for better healthcare and greater access to care. I can promote greater understanding. I can participate in walks and rides and other events that help raise money to fund bigger research, better tools, and hopefully, a cure. I can write my elected officials. I can support the amazing D-parents who are courageously telling their story. If I can’t remove diabetes from my vocabulary entirely, I can at least work toward making life a lot better for the kids.

Even though it might cause an issue with the naming of certain conferences around the country, my wish is for no more children with diabetes. If I ever had a child of my own, I’d want that to be what I’d change. I’d want that to be my legacy.
 
 
This post is my July entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetescaf.org/2014/05/may-dsma-blog-carnival-4/
 
 
 

May #DSMA Blog Carnival: People trump Proprietary.

The May DSMA Blog Carnival topic has required a lot of thought on my part. And to be honest, I’m not through thinking about it yet:

This is a grassroots initiative calling for diabetes data and device interoperability — so that we PWDs have full access to our own data, can share it as we like, and can use on whatever apps or platforms we choose without being locked into some proprietary product from just one manufacturer. For the month of May, we’d like to know:

Why does open D-data & device interoperability matter to you? How might your life improve if open data were the norm?

I originally wrote about this in a story about an interoperability conference I attended back in February.

To me, the problem with “proprietary” software (or “proprietary” anything else, for that matter) is the very ideal of proprietary: To continue sole ownership of and profit from a device, or an algorithm, or something else, forever. Or at least until the next proprietary thing can be developed that will replace the original. By nature, something proprietary is designed to be kept proprietary by its owner not just now… but for generations to come. Never ever shared.

But these companies paid for their product to be developed, right? They should be allowed to profit from it, as much as they want, right? Who am I to suggest they open up their code?

I’m all for profit. I love profit. Proprietary and profit go together like bacon and eggs.

Unless you keep kosher. And there’s the rub with “proprietary”.

Not everyone is the same. Some of the people in the world are blessed with bodies that have fully functioning pancreases. Some are not, and they are People With Diabetes.

Some People With Diabetes are blessed with wonderful insurance plans that pick up a large part of the cost for a new insulin pump, continuous glucose monitor, or test strips. Some are not, and they struggle to afford even the daily insulin they need to survive.

Some people never have to worry about where their blood glucose is headed at any given time. But there are People With Diabetes who deal with hypoglycemic unawareness, something that keeps them from being able to recognize life-threatening lows and treat them in time. For these people, a continuous glucose monitor, the best one they can lay their hands on, is a daily life-saving instrument that they cannot do without.

Some people are lucky enough to have access to world-class healthcare resources, where doctors and nurses can look over them whenever necessary to help them manage those times when they might wind up in the hospital. And some people wind up in the emergency room, waiting desperately for care, because the hospital they have access to still writes down every last statistic about every patient, then manually enters all of that data into a computer, then photocopies the paperwork and files it away in a vault somewhere… instead of accessing a standard system that includes all of the patient’s medical history, their prescriptions and doses, pump and CGM data, and their doctor information, leaving doctors and nurses free to, you know, actually practice medicine.

The thing that profit-protectors fear, I think, is that we’ll suddenly go away as customers the minute they open up their platforms. But here’s the thing: I would still want to wear an insulin pump. People would still want CGMs to monitor their blood glucose. I’m going to need insulin as long as I live with Type 1 Diabetes.

Your customers are not going away, profit-protectors. But… How would the lives of both groups of people described here be changed, if the standard of medical software development was focused on the patient… No—On all patients? What other discoveries (and sources for profit) could be discovered by playing with the rest of the kids in the sandbox and making people healthier?

Understand me: Profit is great… capitalism is a good thing. But not at the expense of any of my fellow People With Diabetes. People trump proprietary every time. But don’t fear, profiteers. Open platform or not, your products, and your customers, are not going away anytime soon.
 
 
This post is my May entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetescaf.org/2014/05/may-dsma-blog-carnival-4/
 
 
 

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