Monthly Archives: September 2013

September DSMA Blog Carnival: Are you listening, Doc?

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/
 
 
 

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Wounded. But tougher.

I don’t know why, but it occurred to me recently that People With Diabetes get wounded a lot. Not a shocker there. We are wounded daily on a physical basis, and wounded occasionally on an emotional basis. But either way you look at it, we’re wounded a lot:
 
 
– Wounded when we prick our fingers multiple times per day.

– Wounded when we inject ourselves with life-sustaining insulin.

– Wounded when we change out the infusion sets on our insulin pumps.

– Wounded when we change out the sensors for our continuous glucose monitor (CGM).

That seems like a lot right there. Our bodies are constantly poked, with various devices, to varying degrees, in the pursuit of perfect glucose nirvana. Oddly, better technology means getting jabbed more often than ever before. Any veteran PWD can show you multiple sites on their bodies where they can hardly remember what it looked like before their diabetes care forced a sort of self-mutilation. But I can keep going, and I’ll bet you can too:

– Wounded when we go to the doctor (usually multiple doctors) and blood is drawn for testing.

– Wounded if we fall into hypoglycemia and need to be revived by EMTs who start an IV with glucagon.
Here’s hoping this never happens to you.

– I’m wounded each time I donate blood and a large needle is inserted into my arm.
This is something I’m happy and proud to do, so I really don’t mind this one.
 
 
Then there’s the emotional side of diabetes. Unfortunately, many of us have experienced something like this:

– Wounded when someone asks “Can you eat that?”.

– Wounded when someone treats you like you’re responsible for your diabetes diagnosis.

– Wounded when the boss calls you in and says “What are we going to do to stop these low blood sugar episodes?”. Like a simple rewrite can avoid another installment of must-not-see TV at the office.

– Wounded when stubborn lows won’t come up and stubborn highs won’t come down.

– Wounded when our hemoglobin A1c number doesn’t reflect our expectations or how hard we’ve worked in the past three months.
 
 
I wouldn’t think of trading the better care (and much better awareness) of diabetes today for what it was like when I was diagnosed two decades ago. But there’s no denying the fact that better care and awareness (or lack of awareness) comes with additional punctures, both to our bodies and our hearts. Sometimes, the enormity of it all makes it difficult to imagine continuing in such a way. And yet sometimes, in a perverse kind of way, it seems to make us tougher. I like to think that with all of our holes, we’re even stronger than ever. I think I’ll cling to that today as I check my glucose and change my infusion set.

What about you? What wounds you today? What makes you tougher? Feel free to share your thoughts.
 
 
 

Tour de Talbot recap.

Okay… My 55 miles in the Tour de Talbot on Saturday was not my favorite experience on the bicycle.

I was running late all morning, I forgot to put on sunscreen (no burn issues after all), I almost forgot to put on my riding gloves (and I’m soooo glad I didn’t), the weather was iffy, and my BGs did not want to play fair. But when do they ever play fair? Heck, I didn’t even get a photo of anything on Saturday, except my dog when I got home. Not to worry, I won’t bore you with it here. But I did complete the 55 mile journey, in roundabout fashion, and today I have a sore behind and a sense of accomplishment.

So let’s start at the beginning. BG at the start: 219 mg/dL. This is entirely due to the fact that I didn’t bolus for breakfast. I woke up at 81 mg/dL, and I didn’t want to be nearly that low when I started the ride. And yeah, I ate a lot of carbs for breakfast. I set my temporary basal rate at 30 percent for 5 hours.

This is the most laid back event ever. I think I mentioned that last year too, but it’s true. Somebody gives a speech at the beginning that hardly anyone can hear, then we’re off without a horn, or crowds cheering, or any of that. Down a paved two lane driveway and out onto the highway that goes between Easton, Maryland and St. Michael’s (more on that later).

We wound around a bit and then, about three or four miles in, suddenly we’re on a gravel road. Gravel. On my thin little road bike tires. This went on for about three or four miles, I think, and the whole time I’m hearing the same complaints and hopes coming from the other riders. Mostly, “I hope I don’t wipe out on this gravel”, and “I hope I don’t get a flat tire from this gravel”. Oh, and “Who’s idea was this?”. And these are still roads that are traveled by vehicles, mostly local residents and big farm trucks kicking up gravel as they pass by. And this was just the first gravel road we traveled. I started counting the riders on the side of the road with tire issues. I counted ten in 55 miles.

We hit the first rest stop 12 miles in. Even though it’s only quarter past eight in the morning, the salty pickles out on the table at this stop really looked good. But I passed them up in favor of a salty/sweet nut bar. These are usually my go-to snack on these rides. BG at this stop: 129 mg/dL. Pretty crazy, right? I dropped 90 points in about 45 minutes. With a 30 percent temp basal and breakfast carbs still working in my body (I think).

The next part of the trip wasn’t too bad. 18 miles to the next stop. Someone drafted behind me for about the last ten miles of that segment, but it was okay and we made good time. I made the mile 12 to mile 30 segment in a little less than an hour. That’s pretty good for me, on a long ride anyway. At the stop I had another nut bar and waited about ten minutes to let my body calm down a bit after working hard. BG at this stop. 82 mg/dL. I don’t want to worry anymore, so I just shut off my pump for the rest of the ride, and grabbed a banana at the rest stop too. Instead of climbing a steep incline after the stop, I decided to walk my bike to the top of the hill before climbing on for the next 12 mile segment. I’m glad I did.

The next 12 miles were probably the hardest 12 miles I’ve ever biked. About a mile after the rest stop, we turned onto another gravel road. Not as bad as the first gravel road we were on, but I had to make sure I didn’t get too far toward the shoulder or I would definitely have been in trouble. But I also had issues with the weather.

The same front that brought rain to the JDRF Ride for a Cure in Nashville was making its way toward the mid-Atlantic. Ahead of the front were some pretty strong 15 to 30 mile per hour winds from the south. On this stretch, we were riding south (on the gravel road) for about five or six miles. The rest of this part went pretty much straight south too. Straight into the wind. In short, it was brutal. I was never more grateful to reach a rest stop.

I took a moment to sit down and collect myself, and check my BG again: 66 mg/dL. Are you kidding me? My pump’s been off for an hour (and yes, it took me an hour to bike 12 miles). So now, I have to decide if I can even continue. I started with some glucose tabs, then loaded up on handfuls of pretzels for about 20 minutes. When I checked after being at this stop for 30 minutes, I was at 149 mg/dL. At this point, I felt like I could make it the final 12 miles, especially since we weren’t supposed to go any further south.

Shortly after leaving this stop, I connected with a couple of riders who were on my route, so I decided to ride in with them. Now it gets even more interesting. We’re about six or seven miles away from the finish, and we must have missed a turn. Because it wasn’t marked. I had been hearing about issues like this all day. Signs pointed in the wrong direction by pranksters. Arrows marked along the roadway pulled up. That must have been what happened to us, because before we knew it, about the three of us were in the heart of Easton. This was not on the route map. Now what to do? Well, I knew how to get back from where we were, and I wasn’t interested in going back to look for a missed turn, and I didn’t know whether the rest of the route was marked properly either. My decision was to go the way I knew to go to reach the finish. The two riders I had been with since the last stop thought that was the thing to do too, so we rode right through historic downtown Easton, then over to the main highway back to the start/finish.

Then, the final joke: When we near the finish, there were volunteers at the two lane driveway, which was now closed, directing us to go to the next driveway and turn right. So we did that, turning onto the worst stretch of one lane gravel road on the entire trip. With vehicles leaving the venue, coming right at us.

Somehow, we made it through and I was able to finish. BG at the end: 88 mg/dL. I can’t say that I’ll sign up for this ride next year. There were a lot of tough, grind it out miles, but overall, I can say that I’m happy to have been tested and passed the test. We claim our victories were we find them. This one wasn’t pretty, but in the end, it was a success.
 
 
 

D-Athletes ROCK.

I’m off today to do my 55 mile bike ride over on Maryland’s beautiful eastern shore. We start and end in Easton, which I like, because the area is about the flattest terrain I’ll ever ride on. It’ll be warm for this time of year, but the ride starts at 7:30 a.m., so if I put some real estate behind me early, I should finish by noon.

I know I wrote earlier this week about wanting it all to be over. But the fact is, I am pumped to do this ride tomorrow. That’s partly because I always get this way before an event. And it’s partly because of something else that I can’t reveal yet (sorry for the tease). I should be able to talk about it sometime in early October.

Anyway, I’m really excited to do this ride tomorrow, and I’m proud to be a Person With Diabetes who will be out there breaking stereotypes. I’m even more proud to ride in an event on the same day that others, in hilly Nashville, Tennessee, will be riding in the JDRF Ride for a Cure. I’m prouder still that many others with diabetes are training, participating, and yes, competing in athletic events around the world. And I’m not discounting you, all of you JDRF and Step Out walkers. What you do for all of us is special. It seems like the population of Athletes With Diabetes is growing every day, and I love it.

I hope that all of you D-Athletes run faster, swim longer, walk farther, and bike harder than I ever will. I will cheer you on all the way.

I am happy to be part of your team. Go us!!!
 
 
 

Like these links.

It’s been a long time since I’ve shared some terrific posts with you here. Too long.

If you haven’t read these already, let me offer these superb examples of writing for you to enjoy today:

Heather Gabel at Unexpected Blues has a thought-provoking post about anticipation and what it’s like to wait a long time for something, and the feeling you get once the waiting is over:
http://unexpectedblues.com/2013/09/17/and-well-all-float-on-okay/
(By the way, she was fantastic on the DSMA Live podcast last week)
 
 
You may have already seen this post, from Kerri Sparling at Six Until Me that talks about the relentlessness of diabetes, and the depression that sometimes comes with it. And also overcoming that. It’s well worth your time:
http://sixuntilme.com/wp/2013/09/12/filling-back-up-diabetes-depression/
 
 
Are you a fan of the A-Team? (it’s okay… you can admit it)… Bennet at Your Diabetes May Vary, who’s been at the forefront of the #stripsafely campaign, talks about how the initiative is starting to come together. Check it out:
http://www.ydmv.net/2013/09/i-love-it-when-plan-comes-together-or.html
 
 
Finally, here’s a great, poignant story about a New Yorker’s 9/11 this year. Alecia at SurfaceFine has a message for all of us:
http://www.surfacefine.com/?p=746
 
 
But wait… that’s not all! For a limited time only you can put your money where your mouth is by supporting two awesome riders and bloggers participating in the JDRF Ride to Cure Diabetes in Nashville, coming up this Saturday. Support is the fuel that runs this Diabetes Online Community, and your support of these riders just might bring us even closer to a cure:

Click here to support Victoria Cumbow

Click here to support Jeff Mather
 
 
Happy reading… Enjoy your Wednesday!
 
 
 

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