Category Archives: DSMA Blog Carnival

September DSMA Blog Carnival: Are you listening, Doc?

September 30, 2013 – 9:17 am

September’s DSMA Blog Carnival topic goes back to the August 7th #DSMA Twitter chat, where we discussed online interactions between patients, healthcare professionals, and others. So ask yourself:

Assuming online interactions with HCPs become a “mainstream” thing, what would you like those conversations to be about?

I remember this chat. There was a lot of talk about what we share, how much we share, and how comfortable (or uncomfortable) we all were with sharing information online.

So first, let me restate something I mentioned that night: If you’re posting something in an online forum, you need to be comfortable with the fact that anyone (and everyone) can view it and respond. If we get comfy with that idea, it makes it easier when online interactions do (or will) occur. Oh, and remember: Those interactions may happen online, or they may happen the next time you see the person you’re interacting with offline.

That has certainly happened in my case. I have had interactions with my endocrinologist based on things written on my blog. In fact, we discuss (briefly) my blog during every appointment. Again, I brought up the blog during an appointment about six months after I started it. I had to be comfortable with the fact that she could say anything she wanted about it before I could let her know. Freedom to say whatever you want goes both ways, you know?

Anyway, this isn’t about the conversations I do have. It’s about the kind of conversations I would like to have online with my healthcare professionals. Okay… So let’s say those conversations happen online.

I would really like it if those online conversations wouldn’t be entirely online (there I go again). I still believe there is great value in face-to-face, in person meetings with my doctors. But I definitely see great possibilities in online conversations too, and I would like them to be like the conversations about my blog that I have with my endocrinologist: I want them to be an extension of the doctor-patient relationship. Not the entire relationship, but rather an addition to what we already have.

I think it would also be helpful if a doctor and patient could share important information during a critical phase in care. For instance, when a patient starts on an insulin pump the first time, how great would it be if the patient could get online feedback from their doctor to help them with questions and adjustments? How helpful would it be for a doctor to get online feedback from the patient on their CGM data after the doctor updates a patient’s basal rates or changes their insulin?

And what about support? I’m talking about support that a healthcare professional can give that lets a patient know that they recognize the effort that’s being made to manage diabetes on a daily basis. Support from a doctor could be worth its weight in gold to a patient who’s struggling, and all it costs is the time spent on an e-mail or a blog comment. I think a lot of patients would find that kind of interaction priceless.

Honestly, with examples like that, I don’t see why more online interactions aren’t taking place already. Overly optimistic? Maybe. I’m just talking about the kind of interactions I’d like everyone to have with their HCPs.

Remember: If you’re going to post something online, make sure you’re comfortable with getting feedback about it. But if you are ready for the online conversation to be two-way, here’s hoping your discussion is helpful and supportive.

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/2013/09/september-dsma-blog-carnival-3/
 
 
 

By StephenS | Tagged , , | Comments (0)

August DSMA Blog Carnival. The emotional impact of diabetes.

August 28, 2013 – 9:39 am

August’s DSMA Blog Carnival topic touches on the link between diabetes and our emotional well-being when it asks the question:

What can a parent of a child with diabetes, or a person with diabetes, do to help reduce the emotional impact of caring for diabetes?

I’m going to start off by saying it’s okay to vent a little. When we’re doing everything we can to handle life and diabetes at the same time, and the hemoglobin A1c comes back higher than we’d hoped? At those times, it’s hard not to feel defeated. So it’s okay to let off a little steam and complain about how hard it is to maintain a healthy diet, exercise routine, BG checks, infusion set changes, and effective basal rates, along with work, school, kids, family, paying the bills, etc.

Once we’re through complaining, however, the cold hard facts are that we’ll have to get up tomorrow and diabetes will still be with us. We’ll have to do that fingerstick and that bolus before we start in on breakfast. And knowing that, in those moments, is where it really gets hard sometimes.

Enter the Diabetes Online Community. At any time of day, in every corner of the world, it seems, there are people who understand exactly what you’re experiencing. Because they’ve been through it themselves. When you reach out in those moments, these individuals are there to console you and support you. They make you stronger by reminding you that you are not alone, and you can keep going. Empowering, without judgment. Just perform a Twitter search for the hashtag #DOC. When I checked recently, I found a dozen or so recent conversations of support, tips, and other examples of people in the community giving a leg up to those who need it, when they need it most.

Certainly, we can try to lighten up on ourselves. Caring for our diabetes or our child’s diabetes is difficult, taxing work. It requires both physical and mental strength and stamina. How many times per day do we perform math calculations? How often do we check glucose? Have we treated overnight lows and lows at work? You bet we have. And we do this every day, usually with the only promise that we’ll have to do the same thing again tomorrow. So while it’s important to stay on top of things as much as possible, we can’t always kick ourselves for missing the occasional bolus or miscounting the carbs on the dinner plate. None of us is perfect—we will make the occasional mistake. We cannot let it define who we are. Overcoming those difficult diabetes moments is what makes us champions.

Last, but not least, when all else fails, we know that there are professionals who can help us deal with the emotional pitfalls that come with years of caring for a chronic disease. More people than you can imagine have already reached out for that extra measure of consultation and feedback to get their emotions on track again. It’s nice to know that when we need it, there is an extra layer of care to be found.

There are a number of things that try to get in the way of us living a fantastic life, while living with or caring for diabetes. Hopefully, those setbacks are minor. Emotions (sometimes, raw emotions) are part of our entire package. But they don’t have to drag us down. By venting a little, commiserating with our online pals, letting ourselves off the hook now and then, and reaching out for professional help when we need it, using the tools available to us helps us to reduce the emotional impact of caring for, or living with, diabetes in our lives.

This post is my August entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetescaf.org/2013/08/august-dsma-blog-carnival-3/
 
 
 

By StephenS | Tagged , | Comments (0)

#DSMA July Blog Carnival. Test strip accuracy.

July 29, 2013 – 9:42 am

Let’s get right to it… One of the most basic things about our diabetes, and July’s DSMA Blog Carnival topic:

Blood glucose. It’s front and center when it comes to diabetes. It is how we get diagnosed and it is what we are trying to manage. An important tool we use to manage our blood glucose is our meter and its strips. But what happens if our meters aren’t giving reliable information? Let’s explore that this month as we discuss a topic from the June 26th chat Fill in the Blank. Weigh in on the following statement:

Test strip accuracy is important to me because______.

The easy answer is: Because our lives depend on it.

The more difficult, but very necessary analysis of what test strip accuracy is even more important, but leads to the same answer.

Let’s face it: Most of us don’t think too much about test strip accuracy once we’ve bought our blood glucose meters. Some of us received our meters from a doctor. Some of us went out and purchased a meter based on quality, or how it looks, or whether it has a function that lights up your test strip so you can check your BG at night without turning on the light. But for most of us, once we have a meter, we don’t stop to think much about the accuracy of the strips that we insert 3 or 4, or 10 or 12 times per day.

But we’re learning that there are reasons to be concerned about the accuracy of our test strips. Even the USA’s Food and Drug Administration, the agency of the government that has to approve all medical devices before they can be marketed or sold here, acknowledged that some test strips are not as accurate today as they were when they were approved for use in the first place. Furthermore, they have no method of removing inaccurate test strips from the market once they’re found to be inaccurate.

How does this happen? That’s the subject for another blog post. Instead, let me ask: How does that make you feel?

Raise your hand if you can live with using test strips that may be off by 50 or 100 points at any given time, based on any number of factors. Raise your hand if you it’s okay with you that heat or cold tolerances, or age, or humidity can skew the numbers on your meter display by enough to cause you to bolus a unit or more different from what you really need. Raise your hand if you’re perfectly fine with the idea that the company that developed the technology for the strips you’re using doesn’t have a plan to test the continuing accuracy of those strips (**Note: Some manufacturers do conduct ongoing tests on strips… many do not, and are not required to do so).

Think about it… millions upon millions of us, living with diabetes. Testing our blood glucose many times per day. Making decisions about diet and exercise and bolus amounts based on the numbers showing on our meters. Why? Because we want to believe that if medical technology has been approved for our use, the accuracy of that technology is above reproach. Do you see now why test strip accuracy is so important? It’s the baseline for countless decisions we make every day.

So without question, test strip accuracy means the world to myself and my loved ones. We want to know that the number on our glucose monitors is correct. Because our lives depend on it.

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://diabetessocmed.com/2013/july-dsma-blog-carnival-3/

 
 
 

By StephenS | Tagged , , , | Comments (2)

#DSMA June Blog Carnival. #Diabetes Devices.

June 27, 2013 – 9:35 am

June’s DSMA Blog Carnival prompts us to think about the many devices we use in our daily lives with diabetes, and asks some great questions:

Regardless of which type of diabetes you have – T1 T2 or T3 – you probably use one or more diabetes devices on a daily basis. For this post, when we refer to devices we mean blood glucose meters, insulin pens or pumps, and all other diabetes medications. This month we’re going to revisit the May 15th chat on Diabetes Devices and really think about what we use. We’d like to know:

How do you select the diabetes devices you use? To others looking into new or replacement devices, what would be your best advice to someone shopping around?

This really brings back some memories for me. If I may, let me give some advice by telling you how not to choose devices.

First, let’s talk about meters. After my diagnosis, I just accepted the first meter that was handed to me, and I used it for about ten years. I mean, they wouldn’t give me something that helps determine how I use insulin and the various ramifications of said usage without it being 100 percent accurate and never failing? Right?

Wrong. It’s not that my meter wasn’t good for its time (it was 1991, after all– only 45 seconds to get my BG!), but I didn’t even think of whether there might be an alternate meter I could use. And if the one I had was still working, why would I need a new one? Then came the day that an endocrinologist asked to see my meter, and she laughed at me when she saw it. She said, “You know, meters have really come a long way since the Mesozoic Era”. I had no idea. It simply didn’t occur to me that things could change, and meters could be even better. From then on, I tried to keep an eye on the latest improvements in meters and test strips, so even if I wasn’t changing meters, I would know if there was a major improvement of some kind that should prompt me to upgrade this very important device. Lesson: Stay current… maybe something better, or at least more useful, is out there.

Now, let’s talk about insulin pumps and infusion sets. When I first decided to start pumping insulin instead of injecting it, I had really only seen or read information on one pump product. So when my endocrinologist (who I had just started seeing six months earlier) said I should read about additional manufacturers of insulin pumps, I took her advice but didn’t really change my opinion about what I wanted.

In the end, I chose the pump that I’m using today for a couple of good reasons, and a few bad reasons. Chief among the bad reasons were the fact that I didn’t really consider the other pumps. I had my mind set on one only, and that’s the one I chose. Also, and this is very important: I didn’t ask anything about any other pump, and I didn’t get any demos or trial runs of any other pumps. This is completely not like me, and I want to kick myself every time I think about it. I should have done trial runs of other pumps. I should have listened to the sales pitches from the other reps (because that’s what you get… sales pitches). I should have asked a lot of questions.

I can’t say that I’m unhappy with my choice of pumps. What I have works very well, and it’s amazingly reliable. Those are big metrics for me. So I’m pretty happy I wound up with the pump I’m using. But I really wish I had done a little more due diligence, so I would be absolutely happy and sure of my choice. Lesson: Be an informed patient and consumer. It can only benefit you in the long run.

These are a couple of examples that I can point to in saying: Don’t make my mistakes. Learn about potentially new meters, medications, and yes, insulin pumps if you’re using one or plan to use one in the near future. Ask a lot of questions. A lot. Here’s an idea: Why not reach out via social media to get feedback on something you’re thinking of? Most of you know how responsive the DOC (Diabetes Online Community) can be, and how we’re very good at giving you the unvarnished truth. Finally, if you can, ask to do a trial run of your potentially new device so you can be even more sure you’re making the right decision.

I can’t guarantee that following this advice will help you land the perfect device to help you manage your diabetes better. But I do know this: More information will help you make the best choice you can make. And who wouldn’t be happy with that?

This post is my June entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2013/june-dsma-blog-carnival-3/
 
 
 

By StephenS | Tagged , , , , | Comments (3)

DSMA May Blog Carnival. Strengths and Weaknesses.

May 29, 2013 – 9:34 am

Strengths and weaknesses… hmmm, let me see… I know they’re in there somewhere. Everyone has them. Why is it I have more trouble finding my strengths than I do finding my weaknesses?

Maybe that’s because I’m not really trying to find my strengths. I’m trying to find what you think my strengths are. That way we can all agree and be happy. Plus, like a lot of people, I tend not to focus on my strengths, preferring instead to focus on my weaknesses, in the hopes of (hopefully) making them go away.

So where was I? That’s right… strengths. Diabetes strengths. Here’s one for your consideration:

I like to believe that I’m a lot stronger than you might think when you see me in person. Stronger as in tougher. Able to get up from a terrible low in the morning, and go to work all day. Able to fight with my prescription provider for my regularly scheduled meds, hang up the phone, and go off to my appointment at the endocrinologist. Able to ride 100 miles on a hot day in June, collapse, and head back to the gym two days later. Able to handle multiple daily injections for 19 years before going on pump therapy, in addition to all of the finger sticks that come in 22 years with diabetes.

I guess you could call it perseverance as a strength. That’s something that I think all of us living with diabetes possess. Because really, do we have another choice? Sometimes this thing will try to knock us down, and sometimes it will, but the real victory is in getting back up and continuing to live meaningful lives, despite pump tube occlusions or a crazy metabolism that decides to suddenly kick in six hours after a hard workout and drop our BG into the 40s (or the 2s if you’re outside the USA), or a hemoglobin A1c that doesn’t reflect how amazingly hard we’ve worked in the last three months. Living well despite all that… that’s what I mean by strength.

Weaknesses? I’ve got ‘em. They’re not very fun to identify either.

I admit that I have a weakness for salty carbohydrates… chips, popcorn, stuff like that. Needless to say, carbs aren’t the best thing for People With Diabetes. Also, I’m not big on logging data. If logging data were as easy as breathing, I’d be the best logger ever. But since it’s not, I’m not good at logging data. Of course, the good news is that by admitting what my weaknesses are, I can get to work on being better at cutting out the carbs and uploading the data.

But whatever our weaknesses or our strengths are, two things remain important. First, that we continue to keep doing our best, showing an example for other PWDs by showing that nothing can keep us down. Second, we need to continue to support each other as we try to come up from our lows and come down from our highs. Trust me… you are an inspiration for someone. That’s a strength, and it’s even more of a strength the longer you persevere. Stay strong.

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://diabetessocmed.com/2013/may-dsma-blog-carnival-3/
 
 
 

By StephenS | Tagged , , , , | Comments (1)
%d bloggers like this: