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MDI and I Don’t Hustle and Bustle July 11, 2014

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City folk and country folk are two totally different characters. The love of noises (or lack thereof), daily expectations and even waking hours seem often to trend in opposite ways. While visiting Chicago awhile back, I wondered if diabetes management choices differ as well. More specifically – insulin pump use.

I used a pump for a couple years before deciding that multiple daily injections (MDI) is currently the better fit for me. Except while traveling. For airplane and flexibility-required journeys, I often switch to the pump. Except I forgot that. (How do I forget to switch insulin delivery systems? I don’t know. It’s kind of a big thing). But man did I miss the pump in the hustle and bustle of a big city.

I missed the option to change a basal rate when a walk through the city, a bus wait or a restaurant wait was longer than expected. Or shorter. Or more strenuous. Or completely changed because an alternate public transportation option became available or the original choice restaurant was more crowded than the one twenty minutes away. Or group plans change because somebody else was dealing with city stuff (aka, the above stuff).

I feel like country (or even suburban) dwellers do not face these diabetes speed bumps on a frequent or as extreme basis. Restaurants do not seem as crowded so I can usually more safely do insulin before I eat. Public transportation? Uh… we’re working on that. The day is just a bit more predictable, and if plans do change last minute it is probably to something I’ve dealt with before (first choice restaurant is full…no problem, I probably have eaten at one of the other 10 options).

City life for me was just a bit more unpredictable in ways that were difficult for me to handle with MDI. Even removing variables like being on vacation and never having been to Chicago before, I think a pump still would have been easier to work with. City dwellers – are you on a pump or is MDI working for you?

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If You Want To September 6, 2013

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“…if you want to,” said my endo. He added on this last phrase, as an afterthought.

My endo plays significant roles in many top Type 1 diabetes studies, including a recent study for the closed loop solution with automatic suspension. Essentially the closed loop system means an insulin pump and a continuous glucose monitor (CGM) talk to one another and can make a treatment decision without user intervention. A key part of this particular study is when the CGM alerts to a low during the night, the pump automatically shuts off for two hours*.

I am not cool with this.

If I turned off my pump for two hours in the middle of the night I’d be sky high by morning. Sure, you can override the turned off pump, but that kind of defeats the purpose of an automatic action. (YDMV – I can see the value of this for kiddos, worried parents and hypo-unaware folks).

I don’t trust my Dexcom CGM 24/7, the best sensor on the market today, enough that I’d be okay with it talking to my pump and making a decision without my input.

This closed loop system uses a different CGM and pump than what I currently use. I picked my system for a reason. Because it works for me and my life right now.

Those are three significant downfalls, for something that I am not convinced will improve my care. And “…if I want to.” is the LAST phrase from my endo after his spiel?

I’ve lived with diabetes for a long time. Since I was old enough to make decisions, I made the decisions about how I handle my care. Yeah, I could be in better ‘control’, but the things that often throw me out of control have nothing to do with my choice of treatment tools.

So Dr. Endo, you are absolutely right – if I want to. It is my decision, not yours. I value your bias yet educated opinion, but only if I want to, will I take action. The tools I use every second of my life – those are tools that I use because I want to. Because I see their value to my health and because I want to find a way to incorporate those tools into my health care.

Don’t you dare make me feel guilty if right now, I don’t want to.

*Note: I am not a doctor. I have not read the study details. Talk to your doctor or do your own research for the scientific facts. The study is titled Threshold-Based Insulin-Pump Interruption for Reduction of Hypoglycemia .

Walk It Off July 11, 2013

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I lost another clipped-to-me, number reading, 24/7 device yesterday.
Not my pump – that’s attached (thankfully).
Not my Dex – this would be a panic-post if that were the case.
A pedometer. A stupid pedometer. I don’t even like pedometers. I don’t care what number shows up on its little screen. But for four months, my employer does.

My employer participates in a program designed to motivate employees to be more active in hopes of increased physical and mental health, and increased productivity. Overall, it’s a cool program. And when I haven’t lost my pedometer, I only get slightly annoyed about tracking yet another number.

But when I reach down to my waistband and realize my pedometer’s missing, I lose it. I already keep track of at least three medical devices each day. My ability to focus, work, drive, exercise depends on those devices. I should be able to keep track of one more. I should be accustomed to a painstaking awareness of where all my devices are at all times.

Losing one, just the most unimportant one, is a reminder of all the other things I carry every day. Shouldn’t I get some sort of extra credit for having to carry and track all sorts of other things during the day, every day? My coworkers get to forget their awareness of what is attached to them after four months. But after this step-count event is over, I still have stuff attached. Stuff with numbers that I need to track everyday. Stuff that can’t be left behind. Stuff that is more important than a pedometer will ever be.

When my attached things stay attached, I feel accomplished in being successful with all the small challenges that become second nature (you know, door knobs, seat belts, pulling down my pants to pee without ripping off a site). But when things go wrong, frustration and bitterness are easily and quickly misplaced. There is no reason a missing pedometer should send me into feeling guilty, irresponsible and defeated. Time to walk it off…

The Look June 26, 2013

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The Look.
The momentary blank glance while I quickly push buttons on my insulin pump or I shift my gaze to my DexCom. It’s the same look. I got it from my grade-school nephew while I glanced at Dex and bolused before I ate dinner. The same look appeared on an acquaintance’s face when I bolused at lunch. But that look, the look of momentary ‘hmm’, of a question, a query, a ponder. It lasts just a split-second before we all move on. I’m done with whatever I was doing before they formulate a verbal thought.

Very rarely in these cases do I say a single thing. I am doing what I must do before I eat, during exercise or whenever. It’s likely that this is the first time you noticed me doing anything different; even though we’ve hung out before.

I prefer that people get to know me first, and to realize that I do all the ridiculous things I do just because that’s who I am. Diabetes might have contributed, but it is not the main point. Stopping to make a big fuss about an insulin injection, pump bolus or blood test makes diabetes more important than whatever I was really doing. And I don’t want that. Yes, I must take extra steps to do the same activity you do. But I take those steps quickly and move on. I think that sets an example for the proper reaction. And in most cases, that split-second look is just that. A nonjudgmental, indecisive, split-second.

But not making a big deal of something does not mean that it is not important. If I don’t take those extra steps, I die. If I miscalculate those steps, I must deal with consequences. And those ideas deserve attention.

Is The Look a missed education opportunity? Or, is not saying anything about The Look an education in itself?

How do you PWD handle The Look? Does it depend on the situation or the person?

Wordless Wednesday: Never 2, Always 3 May 29, 2013

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Three infusion sets, one pump.

Never do two infusion sets fail. Always three. THREE. Diabetes, I am not amused.

Wordless Wednesday: Hold on Infusion Site! May 8, 2013

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This infusion site has seen better days!

I have small hope that this infusion site will make it through airport security, the plane ride and drive home.

Wordless Wednesday: Look Closely January 30, 2013

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Look closely! I would have tried to take a better picture...but a disaster was about to happen. (This will make zero sense to working pancreases.)

Look closely! I would have tried to take a better picture…but a disaster was about to happen. (This will make zero sense to working pancreases.)

That’s Not Going To Work December 12, 2012

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I have to credit @GingerVieira for this post topic. We sat at the Friends for Life (FFL) hotel bar, ordering sweet potato fries with dip (Awesome appetizer. Or meal. Or snack.), I bolused and said something like, ‘That’s not going to work. But whatever.’ She laughed, we talked about it (‘cause that’s what you do at FFL, you hang out with people who get it), and she said, ‘You should write a blog about that!’

I bolused with a pretty confident guess that it was not going to work. The insulin amount and timing was not going to work because I didn’t know what I would be doing, where I’d be going, or how those delicious fries might interact with my cells. Or because on some minuscule level in my body something is off, just a little bit, and I don’t even know. But I bolus some amount anyways, because I have to.

Because some bolus is better than no bolus. (Your Diabetes May Vary).

Because I’ll definitely require some insulin, but also because I might learn something about how sweet potato fries work. No matter how long I’ve been at this game (or you know, my life), I must keep learning, even though it might not work the first time. Or the first few times. Or ever. But sweet potato fries are almost always worth it.

What have you tried, knowing that it probably won’t work out, but tried it anyway?

Book Review: Insulin Pumps and Continuous Glucose Monitoring October 3, 2012

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ADA’s new educational-resource book trends with the times – insulin pump and continuous glucose monitoring (CGM). For real people – not trial situations or the nonexistent perfect diabetic. Me being a real person, CGM user and new to the pumping world, I figured I could pick up some tips.

The book is a quick read and addressed topics from basic pump functionality to an artificial pancreas. The last quarter of the book presented information that long-time diabetics or long-time pump users might find useful. Much of the first three-quarters is basic diabetes knowledge. Many chapters included easy-to-use tabular information such as a suggested percentage change for a bolus dose based on the CGM arrow direction; or what level of diabetes-responsibility parents might expect from their child with diabetes at what age. The book kept ideas simple, explaining scientific ideas without diving too deeply into the science. I recognize that is a difficult task to accomplish and the authors succeeded.

The book discussed events that actual people with diabetes encounter, a refreshing consideration for educational material. For example, consider where your waistband is before you place an infusion site in that proximity. Or suggestions for pump settings during sex (new book topic anybody?). I would have liked to see more real-life examples; including how to better use both a pump and CGM together.

As a technical writer I read rather critically of professionally published material, and was not impressed by the writing quality throughout the book. As a long-time diabetic I found many general statements that conflicted with my personal experiences, which disassociated me from the book. YDMV. However the authors showed no preference or opinion regarding specific insulin pump or CGM companies, or features which might infer a preferred brand.

Title: Insulin Pumps and Continuous Glucose Monitoring
Author: Francine R. Kaufman, MD with Emily Westfall
Ideal Audience: Newly diagnosed patients and family regardless of their management system, people considering an insulin pump, educators (for example, school teachers) and general physicians
Read when: You have a spare rainy day or long travel periods.

Disclaimer: I responded to a post that offered this book at no cost to me, for review consideration but no compensation. As with all entries here, my comments and opinions are my own unless otherwise stated. I am not a medical professional. Contact your medical team regarding any health-related concerns, questions or changes.

Download Chaos June 20, 2012

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I had solid intentions to be a proactive diabetes patient. I’ve set temp basal rates around the same time of day almost every day for a couple weeks now, so I figured I need to change my regular basal rate. But, I figured I should download my pump and CGM to verify the trends before making any big changes. Several weeks later, I actually got to plugging all that crap into my computer to download the info.

I first downloaded my pump, thinking I could find a graph with temp basals, basals, and boluses. Nope (That could definitely be user error- I’m still new to the whole pump thing. It’s hard to download a syringe.). And I got frustrated real quick. I knew exactly the graph I wanted to see, and what I wanted to compare, but couldn’t find it quickly or easily.

So I switched gears to download my CGM. I am more familiar with that program, but that still left the missing information of actual basal rates. Which is kind of an important part if that’s what you are trying to fix. Instead of a single chart with a few pieces of specific information, I have all this data, data reminding me of my broken parts 24/7. Sometimes the data reflects how I feel, sometimes how I feel reflects the data. It is all there- every five minutes or every push of a button. Yet when I try to make sense of all this information, and even with an end goal in mind, I am easily frustrated with all the graphs, numbers, trends that give me an idea of what I’m looking for, but not exactly it. And I’m someone who has always enjoyed research and analyzing reports! A few printouts, a bizallion different data views, good old pencil and paper, and one beer later, I found my new basal rate setup. But that process should not have added to my lack of motivation to download my devices more often.*

Do you have a schedule for downloading your devices? Or a routine for what views you look at each time?

* I love my endo and I have good nurses. But for this case, figuring out the fax machine at work and playing phone tag with the endo’s office didn’t seem crucial.