The last couple of months have gone by quick. It feels like the last 90 days has been about 2-3 weeks. Summers for me are always a very time consuming few months. My work actually picks up during that time period, my wife is off for the entire summer and I do a lot of traveling… just like most people do. This summer, however, has had a lot more traveling than normal, so I knew that I wouldn’t be able to keep up with blogging and tweeting and advocating and everything else that I normally do on a daily basis.
And ya know what? It felt so damn good to take this break. There have been plenty of times where I just felt overwhelmed with trying to keep up with all of the diabetes related initiatives that are always going on. I came to a point where I felt that I was doing something just to do it and I didn’t really have that much emotion or passion for whatever I was promoting or helping out with. I have a stack of about 5-6 diabetes related books that I just couldn’t read anymore because it was just too much diabetes.
After 10 years, these last few months have been my first real exposure to diabetes burnout. I just couldn’t take anymore diabetes other than the daily activities that I had to do to maintain a decent blood sugar. Do I want to go to the park with my nieces or read another post about the Scientific Sessions? Should I go out to the bar with my friends or write another post about my insulin pump? Should I hang out with my family and watch a movie together or chat online with others about diabetes?
To me, these answers were pretty damn easy to make over the last few months.
But, over the last few days, I have been missing it. I have began getting that itch again that I need to do something, I need to write something, I need to fight for something.
So, here I am. My batteries have been re-charged and I am ready to go. I know better than to just jump head first and go full speed ahead right away, but I am slowly getting more involved again and I hope y’all haven’t forgotten me too much!
I look forward to connecting and talking with you all again on a more frequent basis.
Back in 2012 I wrote about a new movie called, The Longest Swim, which is about the story of one kid attempting to save the life of his best friend with diabetes.
I received an email the other day from one of the film’s creators, co-producer Don Mainardi that the movie was released and is for sale from Amazon and Best Buy.
The main goal of the film is to help raise awareness about diabetes and to work together with non-profits like American Diabetes Association and JDRF.
You can buy the DVD here -The Longest Swim
Back in January when I had the pleasure to attend the Medtronic Diabetes Advocate Forum, one of the focus areas was the Medtronic Customer Service and their StartRight program. During the presentation, I was very excited about how much effort was being put into the Medtronic customer service team. In the past, I have had some bad experiences with customer service. However, Medtronic was the first medical company that actually would allow an individual rep to email me directly, and for those that know me, email is my ONLY form of communication.
When I started back up on the pump trial a couple of weeks ago, I received a phone call, voicemail and email follow up from the StartRight team to make sure that I had all of my supplies delivered, I prepared for my training and to see if I had any additional questions or concerns. After the training occurred and I started on the pump, I received another follow up a few days later to see if there were any questions or concerns again about being on the pump or Enlite sensor.
I think that this is a great way to handle a new customer being on a product. First, making sure that they have everything they need to get started and then provided some follow up support after they have been using the product for a few days.
Obviously, I live on social media and when I have complaints or issues that I need taken care of, I use social media to attempt to communicate with a company. I actually prefer doing business with a company that will communicate via social or email instead of those that always just want to call and discuss things over the phone. Have I mentioned I hate being on the phone yet?
Medtronic has been doing an amazing job with their social media customer service. After the first few days of being on the sensor, I mentioned on Twitter that I didn’t tape the sensor down properly, so I received a reply on Twitter asking if there were any specific questions that I had, and then was provided a link to the Medtronic support page that provided more details about the taping of the sensor….perfect.
Then, it got better the next day. I then had an email from Medtronic titled – Additional Tape Tips.
This is customization at its finest. Although this was a pre-formulated email, it was addressed to me and made it feel customized and unique to my situation and my issues (PR companies, take note!)
Like yesterday’s prompt, I’m not much of an expert here. The life hacking tricks that I use for diabetes have all came from other people’s recommendations. I’m not on the Dexcom currently because of my trial of the MiniMed 530G, but when I am wearing the Dex, I use the glass trick that was mentioned in the prompt and by Kerri.
The only hack that I might have right now is that I use the tape that comes with the Enlite sensors to hold it down on my infusion set as well and it has helped a lot. I have always had issues with keeping infusion sets staying on my stomach, but this tape lasts pretty much forever.
The tape already has a hole in the middle of it, but I cut the piece of tape in half so that I can put half of it on the the bottom half of the infusion set and the other half on the top part. This allows me to not cover up the plastic part of the infusion set that connects to the tubing.
Other than that, that’s pretty much my only diabetes life hack. Hopefully you can find some more at the list of other posts from today for Diabetes Blog Week.
Today’s topic for DBlog week is Diabetes Mantra or what helps you get through any of those down times that you may be having with diabetes.
I don’t have many diabetes specific mantras, but I live life with a few. The most specific diabetes related mantra that I have is… “It’s just a number” and that typically is said when I have a high blood sugar. It’s just one single number and I can correct it and move on from it.
I wish that I had more to write about this, but I don’t.
Today’s DBlog Week prompt is What Brings Me Down. I’ve always had a difficult time talking about the mental health and depression side of diabetes, because frankly, I rarely do experience it. I know that it sounds like a cop out, but I truly do filter out the negative thoughts into my brain and channel them into a positive.
Diabetes is tough, that’s for sure. It’s not easy to wake up every morning not knowing if you’re going to have a good day of blood sugars or a bad day of blood sugars. Are the same carbs I ate yesterday going to act differently than they will today? Who knows. Diabetes has made me such a stronger person to be able to handle everything that it throws at me.
I use the phrase, “it could always be worse” a lot when it comes to any negative situation that comes up in my life. I believe, at least for myself, that stress only leads to more stress. So in order to eliminate stress, channel that stress into action. Meaning, take whatever is getting you down or stressing you out, and find the positive of it and do more of the positive.
That is not just something I live by when it comes to diabetes, but life in general.
Today’s DBlog Week prompt is about poetry. I am definitely no poet, but I have written poems in my past. I have no proper training, so I just rhyme a bunch of words that have some meaning to me. I have written two other poems that have changed my life, and this now become number three. I wrote a poem to ask a girl out 9 years ago and then I wrote another poem 8 years later to ask her to marry me.
So, here goes nothing.
Diabetes, Me and You
The day I was vomiting and became very sick,
They couldn’t read my blood sugar from just one simple prick.
They had to know my blood sugar, so bloodwork was taken,
The doctor came back and the diagnosis was not mistaken
Chris, you have diabetes and you need an insulin drip,
You can’t eat or drink, but you can suck on this ice chip.
Educating myself and trying to calm down my mother,
I wondered to myself, who else has diabetes, I couldn’t think of another.
As days to months, and months turned to years,
I accepted the disease and overcame all of my fears.
My day’s now require insulin and blood sugar tests,
But my life is no different than all of the rest.
I created a business with type 1 diabetes to live out my dream,
But I couldn’t have done it without my supporting team.
This includes HCP, friends, family and of course my wife,
If it weren’t for diabetes, she would not have been brought into my life.
So for that diabetes, I really do want to thank you,
So until the day of a cure, I will manage living day to day with you.
I am so happy that this topic is part of this year’s DBlog Week. Even though most of us are advocates, we may not all care as much about certain causes as others do. And as long as we don’t judge each other on not caring as much about certain topics, than that is a good thing. We should put the effort into what we care most about. If you are not passionate about something, it’s pretty much a waste of time.
For me, there are three main areas of concern that I have: Education, Policy and Doing it for the Kids.
When I was diagnosed, I went to the hospital with an 858 blood sugar. I have told this story a lot, but I had all of the symptoms for a couple of months and knew nothing about them or the disease. If I would have just had some basic knowledge of the disease, I could have probably gone to the hospital a lot sooner than I did. This education could be done in a health class in high school or middle school. Of course, I probably wouldn’t have paid much attention to it, but I would have remembered something about constantly peeing every 10 minutes.
After that initial education of general information about the disease, it is alarming how many people with diabetes, don’t really know anything about diabetes. This could be for many reasons, and if it’s from ignorance of the person with diabetes, then there isn’t much we can do about that. However, for those that want to be educated, but can’t because their insurance won’t cover anything more than a 15 minute visit every 90 days, there is something that we can do about that. What is it that we can do? I don’t know, if I had the solution, than I wouldn’t need to be advocating for it.
How do we solve this issue? Maybe something to do with the next area of advocacy.
There are a couple areas of concern that I have when it comes to policy change: Test strip / Meter Accuracy, Coverage of CGM and Insulin Pumps, and Education.
With the effort from the community recently on the amount of comments on an FDA docket, you can see how a little effort can go a long way. Strip Safely is by far the best place to learn more about advocating for meter accuracy. If you would like to know what you can do to help, please visit the site or reach out directly to any of the founders ( Bennet, Christel, Kerri just to name a few).
There is enough data out there to show that those wearing CGM’s have a better chance to manage their diabetes better than those who do not wear CGM’s. Please, do not try to argue with me that you are doing great management without a CGM, because that is not what I am saying here, so save that for something else. For those that wish to wear a CGM but their insurance doesn’t cover it because it is not a tool used to dose insulin means that a person is not allowed to have one…. that’s just ridiculous.
Also, I live in a state, Florida, where state Medicaid dollars will not cover an insulin pump, without at least 157 hoops to jump through. This is just not right. This is an area that frustrates me because I know how much better my management is with a pump than without it. Once again, Your Diabetes May Vary, so save the argument. But, to not be given the choice of how you want to manage your diabetes is not a way that those with diabetes should have to live. So, how do we go about changing this? We have seen advocacy work in the online space recently with getting insulin pump coverage in the state of Arizona.
Doing it for the Kids
As a kid, I did not grow up with diabetes since I wasn’t diagnosed until the age of 19. However, I grew up aspiring to be a professional football player, which knee reconstruction shot down, but it always felt great to have older football players come in and talk to us and tell us stories and give us the motivation to work hard to get where we wanted to be. This applies to a lot of kids, and I don’t think it’s any different for those with diabetes.
I’ve had the pleasure to attend several diabetes camps, meet-ups, and talk sessions where I was able to talk with kids from the ages of 8-16 and tell them stories and relate to them instead of their parents just always lecturing them. I’ve received emails from parents thanking me because they saw an instant change in the way their child was acting towards their diabetes management, and when that happens, it makes me feel that everything that I do is worth it.
In wrapping this up, don’t feel that you have to be involved in every single issue. If you’re heart is not in it, than leave it to those who are. You will not be judged and looked as a bad person because you are not posting and tweeting about every single advocacy issue that is out there. And if you are judged by that, then the person judging you is just an idiot
Happy Diabetes Blog Week!
This past week was SunFest down here in south Florida. It is a 4-5 day event with a lot of music from artists of all genre. There is also a pretty large art festival too. I believe that it started off as a large art festival and then music was added at a later time. Anyway, I had never been to SunFest before because I am not a fan of music festivals. I love country music concerts, but don’t like festivals. This is the first year that SunFest had a country music lineup, so of course I wasn’t going to miss that….plus I had a Groupon.
SunFest in south Florida just sounds hot and sweaty and muggy. In the past, when I was using an insulin pump, my infusion sets usually fall off because of how much I sweat in these situations, so I was a little worried about the infusion set falling off and having to insert a new one in that crowded place. Fortunately, it was overcast and raining off and on (which was ironic because David Nail was there and one of his hit songs as ‘Let It Rain’).
The infusion set stayed in the whole time and the CGM was working great, so I had a good feeling about the day.
The day consisted of only a few beers, some french fries, a cheesesteak, some rice and pineapple chicken, and a few other snacks along the way. It’s SunFest, you have to have some unhealthy food!
I was a lot happier being on the pump than I would have been on MDI. It was a lot easier to take my insulin exactly when I needed, I had the CGM telling me when I was going low or high, and it was the perfect combination. It made me remember why I used to say that I would never go back to MDI when I was on the pump.
It’s coming up on summer concert season, so there will be more of these stories to come.
After I left training for my new pump, I was back on my own and back to the pumping life. As soon as I got in the car it felt so different again having that pump in my pocket and having to buckle my seatbelt without pinching the tubing while doing so. I haven’t had to do this in almost a year.
Once I drove home, it was approaching dinner time and I knew that I was going to be cooking chicken breasts with steamed green beans. As I set the steamer, which takes about 25-30 minutes, the alerts started. One set of vibrates, then another set of vibrates, and then again and again. There were several “Low Predicted” alerts that started going off. I loved the fact that this alert was going off because when I am cooking, I am usually sweating and concentrating on cooking the food and not paying so much attention to the quickly dropping blood sugar. I took some time to test after a few of the alerts and the meter test confirmed that I was not just going low, but was in that low state. Little cup of juice while I waited for dinner to finish was all I needed.
— Chris Stocker (@LifeofaDiabetic) April 30, 2014
Later that night was #DSMA and I finally had some free time to participate for the first time in a really long time and I loved the topic of getting to know you. I always want to know more about people other than just the fact that they have diabetes, it’s not the only thing about you, so it would be nice to know more.
Several times during DSMA, I did receive a No Delivery when trying to deliver a few correction boluses. I was in the middle of things, so I just re-tried the bolus thinking maybe it was just a hiccup. Received the message again, so then I did a rewind and tube priming, still received the No Delivery. Since that didn’t work, I figured that maybe it was the tubing, so I grabbed another tubing and primed that one as well, same result, No Delivery. I kind of figured that it was a bad site, but before I just change out the site, I try to troubleshoot it with other options other than losing an infusion set.
Unfortunately, it was a bad site and when I pulled it out, there was blood. There wasn’t a lot because I was prepared for blood to come out and put pressure on right away. After that, it was delivering perfectly fine and my blood sugar began to come back down to normal.
In fact, it started to come down too much come morning time. I woke up around 6 a.m. and I saw that the CGM was reading 72, and I had the threshold suspend set at 70. That meant, that it was going to go off soon and I hadn’t really explained the really loud noise of the Threshold suspend to Amanda yet, so she was going to get freaked out. In order to avoid this, I changed the settings to 60 instead of 70. I then tested with a meter and the CGM read 72, and the meter was 105. I was not very happy with that large difference in reading. I know they will never be the same, and we are to look at the trends of the CGM and not the number, but my BG was actually rising at the time, not falling.
Once again, little OJ and we were good to go.
It was now my first day working again wearing the pump and CGM full time, so I was obsessively checking my BG (I tend to do that the day of and after an endo appt!)
There were not many alerts throughout the day. A few highs, a few low predicted, and one that made me happy because the meter check re-assured me that the CGM was doing it’s job.
— Chris Stocker (@LifeofaDiabetic) May 1, 2014
For dinner, I was really going to put the pump and infusion set site to the test with a meal at Pei Wei, which is about 200g carb in just one plate. This was going to be close to about 2 max boluses. I took a max bolus and then 10 minutes later did a max square bolus with 65% now and 35% 30 minutes later. It worked….a little. There was a high blood sugar later, but nothing the pump could have done any better.
All in all, the first day with the 530G was not bad. It will take a while for me to work out my basal rates again, but I will get there. Wednesday night will be a full week with the system, so I’ll be doing a weekly CareLink report as well.