Tag Archives: diabetes

Diabetes ain’t no sissy game.

May 1, 2015 – 12:56 pm

We’ve talked about this before…

Why is it that we are all so good at making life with diabetes look normal?

The reality is that life with diabetes is anything but. Diabetes is not for sissies.

– How many times have we worked hard, over a period of years, just to get our A1c down to a range that we and our endocrinologists can be happy with? How many times have we worked hard, over a period of years, to keep our A1c from growing higher?

– How many times have we voluntarily engaged in the tradeoff that includes using a sharp tool that causes us to bleed, just so we can help maintain our diabetes management?

– Pump users: How many infusion set changes have you completed over the course of living and pumping with diabetes?

– MDI users: How many injections have you had to endure over the course of living with diabetes?

– How many hypoglycemic moments has your diabetes included? Lows that knock us down… but often we get up and go on with our lives like nothing ever happened. And the people who we would most like to know, don’t have any idea at all what it’s like. Side note: I tell those people that I went through a near-death experience. Because I did. I want them to know how precarious the balance between high and low BGs really is.

– Show of hands: How many of us have had workouts that were cut short due to the fact that our bodies use insulin way better when exercising, and getting the basal/carb/exercise mix is difficult and ever-changing?

– Have you had an endocrinologist tell you that your A1c was high, and you’ve been trying so hard, and you just wonder if you should keep trying anymore? But you do, because, what’s the alternative?

– Did you get one of those unhappy A1c reports, or a high or low number on your meter, or a pump occlusion that causes you to do more than one set change in a day, or a low or high that just doesn’t seem to quit, but…

We forgive ourselves? That, my friends, is real bravery.

I haven’t even started on all the things that parents of kids with diabetes have to go through, much of which is even more out of control than what I go through.

There are many things that diabetes puts us through, on a daily, weekly, monthly, quarterly, year-by-year basis. Sometimes we can feel like a failure. Like we’re weak. Like we’re not as good as someone else. But nothing could be farther from the truth.

It’s easy to forget the fact that we’ve endured a lot, and come through it despite the tough moments (or weeks, or years) that come with living with a disease that is with us all the time, and is so volatile.

Fact: Diabetes ain’t no sissy game. If you’re living with diabetes, and you’re alive, you are a champion.

Have anything else you’d like to add? Feel free to tell me how you’ve endured through the months or years by leaving a comment below.
 
 
 

By StephenS | Posted in Additional Inspiration | Also tagged , , , | Comments (0)

Medtronic Acquires Diabeter: Hopefully, the beginning of something great.

April 27, 2015 – 11:35 am

A couple of weeks ago, Medtronic, the maker of the insulin pump I’m wearing, made a few waves with its acquisition of the Diabeter clinic in the Netherlands. Diatribe has some of the details, and they were able to speak with Medtronic Diabetes President Hooman Hakami. To read the full story, CLICK HERE.

Diabeter has clinics in four different locations in the Netherlands, specifically designed to help children manage their diabetes. They do a lot to work on a continual basis with patients, employing technology where possible to help patients make updates and manage their care in between visits to the clinic. And they’re pretty successful too: Eighty-five percent of their Type 1 patients who wear insulin pumps carry an A1c under 7.5, and half of their patients on MDI (multiple daily injections) do the same. Notable is how involved they are in their patient’s care. In short, they and their patients are sharing data, and making updates to therapy where necessary, a lot more often than the every 90 days model that most of us here in the States work with.

What does this deal do for Medtronic? I think it probably means a lot of things, not all of them bad.

First, they’ll be able to get real up-to-date information on patients, allowing them to see where they, as a company, might be able to step in and make a positive impact. If one particular product or plan works better than another for a patient, they’ll be able to see that and then bring their vast resources to bear on helping bring that to a wider group of patients. Likewise, Diabeter should be able to continue helping patients without worrying about who is going to pay the rent every month.

Let’s make no mistake though. Medtronic would not have made this investment without wanting to profit from it. Initially, we know they would like to expand the Diabeter model to others in the Netherlands and throughout Europe. What would that look like? Do patients get charged every time data is shared back and forth with a healthcare professional? If patients are considering an insulin pump or CGM for the first time, will they be able to choose between a Medtronic pump/CGM and other offerings on the market in Europe? We don’t know how it’s going to work… it’s still too early. But I don’t think it would thrill Med-T if most of the patients at Diabeter clinics were wearing an Animas Vibe system.

And finally… since it’s so successful, could the Diabeter model work here in the USA? I certainly think it could. But I don’t think it would have a chance here. That’s because of restrictions that insurance companies would make on constant feedback to and input from your doctor. There’s a reason why we go to the endocrinologist only every 90 days, and it’s not just about A1c. I also think it would tax endos and CDEs, especially, to be that involved in a patient’s care. There aren’t enough of them to go around as it is.

I don’t know. Maybe I’m too pessimistic about all of that. I know this sort of system would work for People With Diabetes here. The real issues around making it happen would be resources and payment.

I must admit that I find this acquisition by Metronic interesting. I’m going to want to see how this works for everyone involved: Medtronic, Diabeter, healthcare professionals, and most of all, patients. Over the next few years, I’m hoping we see the expansion of proven techniques that help PWDs be as successful managing their diabetes as possible, with the least amount of work involved to get there. And I don’t care where the great ideas come from, as long as they keep coming.
 
 
 

By StephenS | Posted in Diabetes | Also tagged , , | Comments (1)

Still wondering.

April 23, 2015 – 10:13 pm

So… I’m somewhere around three weeks until the next appointment with my endocrinologist.

My last several A1cs have been excellent for someone living with Type 1 Diabetes.

But how have I gotten there? I wonder.

Did I get there with perfect blood sugar numbers all the time?

Did I get there with lots of lows?

If I had a lot of lows, did I do more damage to my overall health than that A1c number is worth? For the record, my basal insulin delivered versus my bolus insulin delivered always turns out to be pretty much what they are supposed to be, I’m told.

But still… What if I’m using too much insulin to knock down potential highs, leaving me with extra insulin that’s just going to get stored around my midsection? Honestly, I’m really worried about that.

What if those lows are killing off brain cells, causing other issues that I haven’t imagined up until now?

What if my A1c looks good, but my highs and lows go up and down through the day like an EKG, instead of like a normal person’s pancreas works?

I mean, look… On paper, I’ve been the model student for some time.

I’m still wondering if the truth is something different altogether.
 
 
 

By StephenS | Posted in Endo | Also tagged , | Comments (3)

Please share your thoughts: #IWishPeopleKnewThatDiabetes

April 22, 2015 – 10:39 am

Denver teacher Kyle Schwartz started this wonderful #IWishMyTeacherKnew initiative, in which she asks her students to write down on a post-it note what it is that they wish their teacher knew. The story is inspirational and uplifting, and reading about it brings tears to your eyes sometimes, and it’s been all over the news lately. HERE is an example, courtesy of CNN.

Kelly Kunik and I both saw this story at around the same time, both of us had similar ideas, but she beat me to the punch in designating today as #IWishPeopleKnewThatDiabetes day. Because she’s just awesome that way.

Look for my takes on this below. Look for additional brain spewing and general thoughts on this meme throughout the day on all social media. And tonight’s DSMA chat is all about #IWishPeopleKnewThatDiabetes… the Good, the Bad, and the Ugly. Join us at 9:00 ET in the USA by following @DiabetesSocMed and the #DSMA and #IWishPeopleKnewThatDiabetes hashtags.

Here we go:

#IWishPeopleKnewThatDiabetes sometimes causes high BGs in the mornings that are a pain in the ass to deal with. But… #gameface

#IWishPeopleKnewThatDiabetes is not equatable or equitable to anything else. Even to yesterday. It’s day-to-day, monitor it all the time, never gonna get a vacation from it.

#IWishPeopleKnewThatDiabetes looks normal, and even manageable, from behind the face of this blog; but in reality, I deal with the same problems, the same headaches, the same highs and lows, that everyone else living with this disease deals with. You are not alone, dear reader.

#IWishPeopleKnewThatDiabetes makes me work harder than my co-workers will ever know.

#IWishPeopleKnewThatDiabetes has caused me to experience near-death hypoglycemic low blood sugar battles at work, at home, in the grocery store, during workouts at the gym, on vacation in multiple countries, and just about anywhere else in my 24 years with diabetes. It has sapped my energy and killed brain cells and while I try, I can’t be guaranteed to not experience another one today. Or tomorrow.

#IWishPeopleKnewThatDiabetes makes me want to simultaneously invest large (to me) sums of money in and kick the teeth out of insurance companies that make life and death decisions for me and my friends based on nothing other than “delivering increasing returns to shareholders this quarter”.

While we’re at it, #IWishPeopleKnewThatDiabetes is making people who already can buy or sell anything they ever wanted increasingly richer, while making other people increasingly have to choose between food for their families, keeping the lights on at home, and paying the mortgage; or buying the drugs and devices that will keep themselves or their loved ones alive on the other. On a monthly basis.

#IWishPeopleKnewThatDiabetes made me one of those people who once had to choose between food, keeping the lights on at home, and paying the rent; or buying drugs, DME, or going to the doctor when I needed it. On a weekly basis.

#IWishPeopleKnewThatDiabetes has blessed me with not only a faulty pancreas, but also the kind of daily resilience that some can only dream of. And empathy that, unfortunately, some others will never understand. That will not keep me from trying to help them understand and empathize with the daily resilience that me and all of my brothers and sisters with faulty pancreases possess.

and…

#IWishPeopleKnewThatDiabetes has connected me with so many people living with and affected by diabetes through daily interactions, Twitter exchanges, blogs, Facebook, healthcare professionals, the scientific community, and as yet unknown additional outlets that inspire, empower, and I know, will eventually overwhelm the bejesus out of this stupid, effing, disease.

If you’d like to add more, join us tonight… and by all means, leave a couple of things #IWishPeopleKnewThatDiabetes below.
 
 
 

By StephenS | Posted in #IWishPeopleKnewThatDiabetes | Also tagged , | Comments (4)

#HealtheVoices15: We are not alone.

April 21, 2015 – 9:37 am

April 17 through April 19, I attended the HealtheVoices Conference in Jersey City, New Jersey. Janssen Pharmaceuticals paid for my train travel, hotel, and meals so I could take part in this gathering. In case you’re wondering, all opinions expressed here, or using the #HealtheVoices15 hashtag are entirely my own.
HealtheVoicesConference
I spent last weekend at something called the HealtheVoices conference in Jersey City. Unlike all of the diabetes conferences I’ve attended in the past three years, this conference brought in people living with a host of different chronic conditions.

And you know what? I discovered we are not alone.

Okay… sure… I knew that People With Diabetes are not the only ones living with a chronic condition. But when you get immersed in a cause, after a while, you tend to forget about the others who are out there working on different causes, lifting up others living with a different disease. One of the really cool things about this weekend was the opportunity to see and hear from people living with and advocating for those living with Chron’s disease, HIV, Rheumatoid Arthritis, Cardiovascular issues, Breast Cancer, Prostate Cancer, and so much more.

The presentations were well thought out and well presented. I liked learning how people are making a mark in their own patient communities. There were also presentations where we learned about the legal ins and outs of writing a blog, how to take an idea and get it funded, and the importance of telling our stories online and engaging with others to create a better community.

And just like the diabetes conferences, there was real value in the one-to-one, peer-to-peer conversations that happened over breakfast, lunch, dinner, and between sessions. Some of the best ideas I heard, and some of the most inspiring things I witnessed, came in those quiet moments where someone was able to share what they’ve experienced and what they’ve learned with a bigger audience. I got to watch groups from other conditions gather and share and laugh together, just like PWDs do. I found that the power of “me too” isn’t exclusive to diabetes.

So by now, you may be asking: What about the diabetes people in attendance? Well, let me tell you… the diabetes team absolutely rocked it this weekend.
BlueFridaysCheriseKarenKim
Cherise, Karen, Kim, and also Christel and Kerri (who also presented and was on the advisory panel for this conference) were sponges who spent equal time gathering information, listening to others, and sharing their stories and tips with others. They were tweeting like crazy and asking questions and engaging in conversation. One of the other things I learned about this weekend is that we’ve accomplished an awful lot all on our own.

I should also take a moment to thank the people at Janssen who gave up their weekend for this event. Thanks especially to Rachel Yurchak and Caroline Pavis, and to the people whose last names I don’t remember, like Stephanie and Beth. You made us all feel welcomed and important.

I’d like to think I’ve met a few people that I’m proud to say are friends now. I’d also like to think that I’ve found a few new things to aid me in my advocacy efforts.

Listen… My diabetes community bubble is good. It helps me when I’m down, it inspires me to perform advocacy, it has changed my life in a positive way forever. The great thing about the HealtheVoices Conference was that I could see, and learn from, additional communities that are doing the same thing, with people who are just as inspiring, and who encourage me to do better and be better. I will never forget their stories.
 
 
 

By StephenS | Posted in Events | Also tagged , , | Comments (8)