Moments of Wonderful

Patient with an app

Sara — Wed, 19 Jun 2013 13:10:39 +0000

I’ve started listening to NPR on the way to and from work. On the way home yesterday, I heard a story that mentioned diabetes. Of course my ears perked up at the mention and I was intrigued by the angle the report presented. The story was about the use and effectiveness of health care apps (read or listen here).

I have reviewed a number of diabetes apps on my blog – as recently as two weeks ago. I have presented on apps to a diabetes educators group in Florida. I have a full page of health care related apps on my phone. And I use them very rarely.

In the report, a popular app developer touches on one of the reasons I do not use the apps more but describes it from a different angle. He thinks that when people with chronic health concerns using these apps have a doctor’s appointment they

… [come] in, [pull] out their phones, and [say], “Hey, have you seen this app?”

Maybe I am missing out, but I have yet to find a doctor who has the time or interest to look at a new (and often untested and unregulated) health care app. If it isn’t directly connected to one of my medical devices, it doesn’t fit into the 15 minutes allotted by insurance. I feel like I want to find an app that fits into my lifestyle long term and offers long term benefits to my health. I am just not sure we are there yet. As the story concludes,
.

many unresolved questions swirl around the data collected by medical apps, including whether the information patients collect become part of their medical record, how would this work, and what will insurance cover.

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Looks can be deceiving

Sara — Sat, 15 Jun 2013 04:25:02 +0000

Sometimes two Dexcoms are not really better than one. These Dexcoms look the same. They feel the same. They smell the same. I didn’t try it, but they probably even taste the same (that would clearly void the warranty).

The only problem – they definitely don’t sound the same.

About a week ago, I was showing the features of the G4 to a newly diagnosed diabetic. One of the features that is most valuable to me is the HypoRepeat alert that continues to beep until it is acknowledged. It is important for me to have something that will wake me up in the middle of the night if needed. I thought I was doing something wrong when “Fixed Low” under the Try It menu was only vibrating and not beeping.

A few days later I realized I really hadn’t heard any beeps in a while. There was no way that I was acknowledging every alarm the first time (when it only vibrates). And my BG control is good, but not that good!

Wednesday night I purposefully ignored a high alert to see what it would do. It vibrated a second time but did not beep.

A quick call to Dexcom and a new receiver was on the way. I got it the next day and sent the old one back today.

Based off the experiences of others, I expected to lose a USB port cover or the wheel part of the button on the front. I haven’t heard (!) of anyone else dealing with a selectively mute CGM.

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A not-so-dramatic reenactment

Sara — Wed, 12 Jun 2013 13:04:44 +0000

The weather is in triple digits for the foreseeable future here so it just made sense to stop for some frozen yogurt on the way home from a friend’s pool on Sunday.

Frozen yogurt and ice cream typically require me to use a dual wave/combo bolus to account for the fat content. However, the blonde-ness of my hair requires that I wash it as soon as possible after being in chlorine or it will end up an unfortunate shade of green by the end of the summer.

I didn’t want to wait for the combo bolus to end, so what was I to do? Well, it seems all I had to do was find a different place to clip my pump. I use 42 inch tubing and I have a waterproof pump; I am not really sure why I didn’t think of this earlier.

Monday was a site change day so I didn’t get to try it again, but Tuesday morning I tried to the shower curtain clip again. I have enough trouble the dawn phenomenon each morning, it makes sense to try to eliminate the disconnect time I was adding to it. I need try a few more days before I know whether it’s working or not, but I’m liking what I see so far.

P.S. The curtain picture is a fully clothed reenactment picture I took last night but what is the deal with the theme of my last two posts?!

P.P.S. I think Briley and Babs have tried not disconnecting as well. Anyone else?

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At the endo with no clothes on

Sara — Mon, 10 Jun 2013 13:27:46 +0000

Friday was my first appointment with my second endocrinologist in my new town. The appointment got off to a bit of a rough start, but I think I found my doctor.

#waitingwithdiabetes

I strongly prefer to schedule my appointments as early as possible in the morning because I hate to wait. The fewer appointments that occur before I get there, the less chance the doctor has to get behind schedule. For this appointment, I had to take the first available, and it was just after lunch time. They sent me 10 pages of medical history to fill out and specifically requested I arrive 15 minutes ahead of my appointment time, so I was hopeful that everything would stay on schedule.

Unfortunately, the waiting room was full (it was a medical practice with a few different doctors) and I waited a half hour past my appointment time (45 minutes total). Then the nurse took me into the room and did all the basic vitals and after she left I waited another 30 minutes before the doctor came in the room. It wouldn’t have been so bad if I wasn’t holding something in just in case they needed a sample of it (if you know what I mean).

The next few minutes were pretty normal – the doctor was happy with my A1c and made one small basal adjustment. But then something happened to me that has never happened before in ten years of diabetes and six different endocrinologists.

He asked me to put a gown on.

I texted a few friends with diabetes while I was supposed to be changing to ask if it was normal, and so far, of everyone I asked, no one has put a gown on at the endo before.

When the doctor got back in to room, I told him that the gown was a first and he was shocked.

Haven’t seen this report in a while. Dexcom with a Mac problemz.

“You’re a new patient aren’t you?”

“Yeah, but I’ve been a new patient a bunch of times before and no one has ever done this.”

“Well I was trained in South Africa and in Boston so maybe that’s the difference.”

“Oh, Joslin?”

“Yes. You know about Joslin?”

“Ummm, I think most people with diabetes know about Joslin.”

At that point he made me stop talking to he could listen to my chest.

The downside of his thoroughness is that he sent me home with an orange jug to be used later in the month and I have to return later today for an ultrasound to check on something else (not an emergency but I just wanted to get it done as soon as possible).

In the past I have found that if my A1c is in a “good” range, the doctor basically skims over everything else probably assuming everything else is fine too. It was actually refreshing to spend time with an endocrinologist who is awkwardly thorough in his care.

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mySugr Companion – Product Review

Sara — Thu, 06 Jun 2013 13:32:04 +0000

A few days ago, Scott Johnson contacted me on behalf of his friend Kyle Rose, asking if I would like to try out a new diabetes logging app – mySugr. As you can see from my diabetes app page on my phone, I am always willing to try an app that promises to make living with diabetes a little bit easier. The bar is set quite high however, for continued use of any of these apps. If there is no value added, it is not worth the time it takes to use it (sidenote: GoMeals is at the top of my list – best app for eating out).

Setting up mySugr was pretty easy. I did get a little confused with the slider bar (pictured below) though. I thought it wanted to know my insulin to carb ratio for some sort of meal calculation. Like a lot of people, I have a different ratio for different meals. Then when I entered my first meal in the logbook, I quickly realized that the slider bar was to set up for exchanges. Apparently some people still use those! (Just leave the bar all the way to the left)

I’ve only been using the app for a few days, so I am still trying out all the features. I logged my lunch yesterday and earned a bunch of points (more on the purpose of points later). It’s nice that I could earn points for things that I do anyway. There was an opportunity to earn more points by logging my location. I am not sure why the logbook would need my location, I don’t understand the benefit for me, and the safety and privacy issues are just too high for me to consider including that information. I was able to squeeze in a little time on my WiiFit after work today and earned points for logging that activity as well.

So what’s the point of points? To be totally honest, I am not sure yet. The progress bar on the home screen helps keep track of the points and the goal is 50 points per day. I obviously have not reached that point yet. There are additional challenges I can participate in, and one of them is at least somehow tied to a donation to a diabetes organization.

There are clear benefits to the mySugr app. It is easy to log BGs, food, insulin usage, and exercise all in one place. The inclusion of the monster makes a boring task a little more fun (especially when you can name it after a friend). The points are a great bonus, and rumor is that the connections to diabetes organizations are going to get stronger. If I can raise money for my favorite diabetes organizations by doing something that takes maybe five minutes out of my day, that is something that would definitely motivate me to use the app.

As is the case with most diabetes apps, I am left wondering if I am the target market. I have an appointment with a new endocrinologist on Friday. I can almost guarantee you that he will have no interest in looking at any of the information from the app. If I can trap him in the room long enough, he will probably look at my Dexcom reports and my pump and meter information from Diasend. If doctors are not taught how to use a mobile app and/or do not understand the benefits of the app, they are not going to encourage their patients to use it.

I am left with the same issue that I end up with on most diabetes apps. What is the value added? Why should I use this app in addition to the other steps in my diabetes management?

I am planning to keep an eye on the app and the updates and continue to experiment with it as more features are rolled out in the United States. If you’ve got an iPhone (Android soon), I’d suggest downloading it and seeing if it fits with your current diabetes management plan or can improve your management and help you tame that diabetes monster.

Disclosure: I was invited to review the mySugr app before it officially launched on Wednesday, June 5, 2013. I was not compensated for this review, and as always, all thoughts and feelings are my own. The mySugr app is now available for download for free in the App Store. For a more comprehensive review, please read Scott’s post.

P.S. The writing of this post was interrupted by a fire truck, ambulance, and hairball. Apologies for any confusion or gaps in information.

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A splinter in California

Sara — Thu, 30 May 2013 12:57:18 +0000

Recent news stories about life for students with diabetes in California have me thinking about my time living there. Most of my life with diabetes was spent in Florida after I moved there for a job, but I was actually raised in Southern California (after my family moved from New York).

Other than a year of my undergraduate college education and two years of graduate school, most of my education was also done without diabetes. I was in public school for part of first grade when we first moved there, went to the private school my mom taught at until 8th grade, and then went to public high school.

my awesome junior high style

My elementary school and middle school each had about 400 kids in them but I don’t remember one single child with diabetes. My mom has taught at that same school for about 25 years now and I asked her recently if she can remember any kids with diabetes who have attended there. In all that time, there has only been one diabetic at her school.

In a circumstance that I don’t think is that strange for a private school, there isn’t a nurse employed by the school. Any time we felt sick one of the secretaries would take our temperature and if we had one, or faked sick well enough (cough), they would call a parent to pick us up.

I still didn’t know anyone with diabetes in high school. It is possible that there was one there, but at that point if it didn’t involve my group of friends I probably did not know about it.

It wasn’t until one day during my senior year that I even became aware of the situation of school nurses in California schools. I was sitting at one of those desks where the chair is connected and reached toward the front of the desk to readjust it. My hand caught on a rough spot on the desk and a large splinter was suddenly embedded in my finger.

The splinter was in deep enough that trying to get it out myself in class did not produce any productive results. The teacher sent me up to the office to see the nurse to have her take it out. When I reached the office I told the lady at the front desk that I was there to see the nurse and explained why I needed to see her. She told me that the nurse was not there that day, she only spent one day each week at each high school in the district and it was not our turn. She grabbed her notepad to begin to write the note to excuse me from the rest of the day of classes. Without the nurse there, the receptionist explained, there was no one there to help me with my injury. Any of the employees in the office would get in trouble for helping me. There was nothing she could do.

I could not believe how ridiculous the whole situation was – I just wanted to get the splinter out of my finger and to get back to class! I was finally able to get her to hypothetically tell me where the tweezers were kept in the nurse’s office and turn her head as I walked into the room by myself. A few minutes later I was headed back to class with nothing more than a small band-aid.

If the California school system is unable to deal with students with splinters, how in the world can they be prepared to handle students with diabetes?

I don’t know what the best solution is in this case. Can the state afford to hire a nurse to be in each school full time? What about the nurses who protest that only an educated professional is trained enough to dose insulin in the schools? What do they think we all do at home? The kid with diabetes that attended my former school had his mom show up every day at lunch until he was old enough to operate his pump for himself. What about the families where both parents work and that is not an option? It seems like the children with diabetes are facing the consequences of being caught in the middle as both sides debate the best solution.

More about the case here and here.

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One day more – my #dayofdiabetes

Sara — Wed, 29 May 2013 13:34:47 +0000

Yesterday I took my turn at Chris’ idea of chronicling a #dayofdiabetes. I changed my site in the morning, ordered supplies in the afternoon, and did the basics of checking my BG and bolusing/eating accordingly. Nothing dramatic. Diabetes isn’t always about the crazy highs and lows. Sometimes the most frustrating part about it is that it just never ends. Today will be another #dayofdiabetes. I’ll just tweet about it a little bit less.

(It’s a bit picture heavy so I inserted a jump to make it load a bit faster. Click through to read and see more)

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Wordless Wednesday: Same Same

Sara — Wed, 22 May 2013 13:04:03 +0000

I think Alexis said it best during the training. It isn’t about having all the right answers or having diabetes all figured out. It’s about giving people the comfort and support that comes from the feeling of SAME.

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Wrap up. Review. Reminder. Repeat.

Sara — Mon, 20 May 2013 13:09:11 +0000

This is an edited version post to what I wrote last year at the end of Diabetes Blog Week. It’s still true and accurate, but I guess with Google Reader ending this summer (what are we planning to use instead, feed reader friends?), I’ll have to change the plan a little bit for next year.

Whew! The ~~third~~ FOURTH! annual Diabetes Blog Week is over!

At times I thought my Google Reader (more about this in a second) was going to explode and with the house/dog/kid sitting for family (my sister-in-law’s sister-in-laws’ kids) I started on Friday and will be doing all week I lost track towards the end a little bit, but I found some great new and new-to-me bloggers and read some really good posts.

So what should we do now?

Submit your favorite posts from this week – or really, anytime this month to the Best of the ‘Betes Blogs. Just like Diabetes Blog Week, it is a chance to stretch the diabetes community wider and draw attention to the great humor, encouragement, and advocacy around us.

Send an email or use Twitter to DM one or one hundred of your favorite posts from this month.

There are so many great posts to share from the 211 participants on Karen’s list! That’s a lot of reading and sharing!

Start with the posts from this topic for a really quick, easy, and helpful shortcut. That’s how I added “Fifteen Wait Fifteen” and “The Rockin’ Ink Star” just last night.

Speaking of reading – I’ve realized that some people don’t know about the beauty that is a feed reader for blog reading. When I first starting reading blogs I had them all saved in my bookmarks bar and would check them all daily to see if anyone updated. I wasted half my time visiting blogs that didn’t even have new posts. Using a feed reader like Google Reader saves me a bunch of time better used to take Dexcom and cat pictures.

All you need is a google account (if you use blogger or have a g-mail account you already have this). Then, when you find a blog you want to follow, all you have to do is click on the subscribe button and you will be notified in your reader when the blog has a new post. If you want to leave a comment on the blog, you just click on the headline and it will take you directly to that post.

A great bonus feature of using Google Reader is the ability to “star” a post. The starred items are saved in your reader, which comes in really handy when you need to put together a list of your favorite posts to send to someone at the end of the month. (hint. hint. nudge. nudge.)

Due to the timing of the weekend, nominations this month will continue though Saturday June 1st at midnight and then the host will post his choices on Monday June 3rd (I need to confirm the host can still host before I link to him – no pressure!).

If you need a reminder of how the Best of the ‘Betes Blogs nominations work (no self nominations, link to a specific post, etc) you can see all the details on this page. You can also check out links on that page to all the past Best ‘Betes Blog posts.

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Diabetes Blog Week Day 5 – The obvious choice

Sara — Fri, 17 May 2013 19:56:20 +0000

With all due respect to the friends who suggested the topic for today, nothing good can come from comparing medical conditions. I’ve seen people live long and happy lives with diabetes, and I’ve seen the opposite. I’ve seen people live long and happy lives with other chronic health conditions and I’ve seen the opposite. I am taking another pass on today’s topic.

Since I already used the other wild card earlier in the week, the only thing left for me to talk about today is my concept for an ideal diabetes service animal.

What is the ideal diabetes service animal? Think beyond the obvious and be creative in explaining why your choice is a good one. For example, maybe a seal would make a good service animal – it flaps its flippers and barks every time you get a good blood sugar reading! (Thanks to Tristan of Based on a True Story for this topic suggestion.)

My first meet-up ever with diabetes included a diabetes service dog – Dixie – and she was awesome. One of us at the table ended up low after dinner and Dixie kindly alerted before the person even felt low.

My second experience with a diabetes service dog was when I roomed with Becca (and her owner of course) at Friends for Life in 2011. Other than when she tried to attack Kim and I when we interrupted her sleep when we came in too late at night, she was an awesome roommate.

Dogs are great and all, but I am slightly allergic. I think the challenges might outweigh the benefits for me. With a hat tip to Jeff, I think the best option for a diabetes service animal would be my two cats. Not just any cats, my cats specifically.

I’ve had Bes and Rose almost as long as I have had diabetes. By this time they must be familiar with the daily management of the disease.

They don’t like to nibble on pump tubing, test strips, or infusion sites. Diabetes supplies are totally safe around Bes and Rose.

They have no problem getting my attention so I think they’d have no problem with alerting. If their food dish is empty (or even close to empty), they let me know. When we lived in Florida, if a lizard slipped under the door they would sit in front of it and alert until I did something about it.

They love to be rewarded. Rose especially, will do just about anything for a treat. I taught her how to sit and stand on command for a simple treat. They are so motivated by food, I am sure I can train them to do just about anything.

They love to cuddle. At least one of them is within a few feet, if not just inches, of me every minute I am home. They’d be close enough to alert and changes in blood sugar at any moment in time.

I can’t count the times I’ve been woken up at all hours of the night. No fear of not waking up due to hypoglycemia in my sleep. I’m sure they’d just walk across my back and poke my face with their paws like they do any other night if they needed to get my attention.

The only problem I can see with this perfect plan is actually getting them to care about anyone other than themselves.

#catproblems

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