Author Archives: StephenS

Hello… I’m Stephen. I live in Baltimore, Maryland, USA with The Great Spousal Unit, Maureen. I’ve been living with Type 1 Diabetes since January 1991. I’ve been a pump user since April 2010, and I’m currently wearing the Animas Vibe pump. Also wearing the Dexcom G5 continuous glucose monitor.

I found the Diabetes Online Community in the summer/fall of 2011, and that discovery has changed my life. I started this blog in April 2012, and since then, my diabetes advocacy has continued to grow. Among other achievements, I’ve attended and spoken up at FDA workshops and participated in clinical trials.

I’ve been thrilled to serve as a facilitator for the Diabetes UnConference. And I’ve been honored to volunteer for Diabetes Patient Advocacy Coalition. You should Google both of those.

I’m currently serving as a member of the State of Maryland’s Advisory Council on Health and Wellness, where I am co-chair of the Diabetes committee. In addition, I’m part of the 2018 Reader Panel at Diabetes Forecast magazine.

I’m always searching for the perfect balance between the highs and lows of my blood glucose level and my life… always searching for the Happy Medium.

Anything you’d like to share? Please let me know… I’d love to hear from you.

#DSMA Recap: Diabetes/Depressive/Depression

December 4, 2014 – 9:58 am

I don’t do this often anymore, but I wanted to touch on last night’s #DSMA Twitter chat. The chat was all about diabetes and depression, how we recognize it, how we treat it, and what kind of resources we lean on when we’re in need.

I learned a lot.

First, some facts. According to a study published three years ago by the U.S. Centers for Disease Control and Prevention, one in ten American adults report depression. The first paragraph of the web page devoted to it tells the story:
”Depression can adversely affect the course and outcome of common chronic conditions, such as arthritis, asthma, cardiovascular disease, cancer, diabetes, and obesity.”

The Depression and Bipolar Support Alliance cites a statistic that says that 8 ½ percent to 27 percent of people living with diabetes also experience depression.

An article published on diaTribe earlier this year takes it a bit further, noting that:
“Diabetes distress is much more common than clinical depression and affects up to 39% of people with type 1, and 35% of people with type 2.”

So depression, or diabetes distress, actually, is a common occurrence among people living with and affected by diabetes. At the same time, there’s a lot of hand-wringing over why we don’t know more about it, and why don’t we reach out more often to those who are feeling this way, and how do we solve this problem?

I’m obviously not an expert, though I can claim to be one of those people who have suffered diabetes distress off and on throughout my 23 years living with Type 1. My biggest problem was that when these moments occurred, I didn’t know where to turn or who to reach out to. And I have to admit to worrying about who to reach out to, because I didn’t want to be seen as a crazy nut, or have my symptoms advertised to the world. I was lucky enough to get through these times with a minimum of help and family and friends who helped me find perspective.

But as in many things, I think the solution begins with ourselves.

We need to make it okay, normal, to recognize the need for good mental health. We need to stress that seeking help when we need it is a normal thing, and it’s a vital part of managing our diabetes. We need to be willing to state this over and over again to people inside and outside of our community. We need to affirm the notion that relying on the resources we need to help us feel better makes us strong, not weak.

And when we see someone who is suffering, we need to hold their hand, look them in the eye, and if we can, help them find their soul and their dignity. This diaTribe post has some great pointers, and links to a number of resources that can help you begin coping right now:

http://diatribe.org/issues/65/learning-curve

If that doesn’t do it for you, and you still feel you need help, please reach out to me and I’ll try to point you in the right direction. Know that if you are living with diabetes and depression, you are not alone. You will never be alone.

I support you… no conditions.
 
 
 

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Like These Links.

December 2, 2014 – 2:31 pm

A few quick hits for you today, since my life has become crazy in the last few days:

– First, the reason why things are so crazy: I developed a major tooth problem over the weekend, which necessitated my first trip to a dentist in about ten years. More on that later. But a root canal is in my very near future, and because of that, my pump decision has been put on hold until 2015. I think my new gravatar is going to be me crossing my fingers, hoping my Medtronic Revel™ pump holds out. If it doesn’t, I’m back on MDI until I can save some money.
 
 
– Speaking of insulin pumps: I have two things to tell you about. First, as many of you know, Asante, makers of the Snap pump, will let you try out their pump for up to 30 days. They’ll even throw in a voucher to cover the Humalog cartridges that go with it. And if you decide to try the Snap pump this month, mention Diabetes Hands Foundation, and Asante will make a donation to DHF. Win-Win! To find out more, go to http://snappump.com/landing/dhf

Something else made its way to my inbox… During the month of December, Tandem, makers of the t:slim pump, are offering up to $400.00(US) toward the out-of-pocket cost of the t:slim as part of a pump exchange program. I’m a little short on details, but if you contact your local t:slim rep or call 877-801-6901, I’m sure they can fill you in.
 
 
– Your response to the open docket on Food and Drug Administration Activities for Patient Participation in Medical Product Discussions (Docket number FDA-2014-N-1698) has been tremendous. People have blogged and reblogged and shared via Facebook and Twitter and other avenues, and that has caused a noticeable spike in comments added to the docket. Last I checked there were 106 comments submitted so far. Thanks Strip Safely, Diabetes Mine Diabetes Hands Foundation and Diabetes Advocates, Christel Aprigliano, Bennet Dunlap, The Type 2 Experience, and everyone who has shared this far and wide.

If you haven’t left your comment yet, you still have until December 4th. That’s two days from this publication.

It takes a village, and this village rocks.
 
 
So… what’s new in your world?
 
 
 

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It’s Black Friday. And I need your help.

November 28, 2014 – 8:50 am

Did I say I need your help? In fact, we need your help.

For the next week, the U.S. Food and Drug Administration has a docket open, waiting for public comment from you and me and anyone else living with or affected by diabetes. What makes this docket unique is that they are actually asking us to weigh in on how we want to be included in the review of diabetes devices and drugs. Can you believe it?

From the FDA’s official docket:

The Food and Drug Administration (FDA) is announcing the establishment of a public docket for comments on FDA activities performed under the Food and Drug Administration Safety and Innovation Act (FDASIA), Patient Participation in Medical Product Discussions. This notice announces FDA’s intent to gather input from stakeholders on strategies to obtain the views of patients during the medical product development process and ways to consider patients’ perspectives during regulatory discussions.

The thing is, we only have until next Thursday, December 4th, to respond. After that, our opportunity is gone. Can you help? Will you please be an advocate and comment? It’s very easy to do, and so, so helpful.

Here’s the link to the public docket

Here’s the link to leave a comment on this docket

Needless to say, it’s absolutely necessary to let the FDA know how important the patient perspective is in the review of things we use to manage our diabetes and stay alive every day. How can you do that?

Tell your story! Personal stories are more important than statistics. Just speak from the heart and tell them what’s important to you, and why. In addition to your personal story, you might want to include these ideas too (feel free to cut and paste):
 
 

– Thank you. Thanks for the FDA’s openness with the Diabetes Community in 2014. FDA opened a number of dockets for people with diabetes to comment. The docket on glucose meters and MDDS provided specific opportunities for diabetes patients to share our views on accurate glucose measurement, and how great it would be to share that information with our support systems.

– FDA engaged in two significant and well received webinars that the community referred to as #DOCasksFDA. These were unprecedented opportunities for patients to hear from FDA and use social media to talk among themselves about specific issues. These webinars were a significant opening and I feel there is an ongoing need to continue the dialog.

– FDA came out and participated at a number of events including the DiabetesMine Innovation Summit, MasterLab at Friends For Life, Keystone, ADA Scientific Sessions, AACE, DTS, and other events. These help consumers as well as physicians and researchers better interact with the agency.

– 2014 saw the creation of patient driven diabetes solutions under #WeAreNotWaiting initiatives. Notably, the NightScout CGM in the Cloud project. FDA is to be commended for their openness to talking with representatives of this ad hoc effort.

– The efforts of FDA’s consumer representative, Rebecca Killion, is an excellent example of the value a patient can bring to the regulation process. As a member of ADCOM panels, she is a champion of patient views.

– I hope that the dialogue between FDA and people with diabetes continues to grow in both content and diversity in 2015 and beyond. I hope that the #DOCasksFDA process leads to a unique and meaningful PDUFA meeting on diabetes.

Finally, I believe that

  • The patient perspective is unique, and should be included whenever the FDA reviews drugs and devices.  This is the most important part of interaction.  No one can understand diabetes the way those who live with it do.
  • Including the patient viewpoint can reduce the time spent gathering information for both reviewers and submitters.  It can help provide a fresh set of eyes on impactful changes to devices and drugs.
  • Having a patient as part of the process focuses concerns and speeds approval of meaningful improvements.  We’re able to ask questions and provide real-world experience of why something works for the patient, and why it doesn’t.
  • Under MDUFA III, the Patient Preference Initiative is critical to give FDA a meaningful look into how people with diabetes consider the benefit/risk paradigm regarding new devices under review.
  • The idea of a person with diabetes, or a parent of a child with diabetes serving as a Special Government Employee, such as Ms. Killion, is extremely beneficial.


 
 
I know I’m asking a lot, asking you to help with this right now. Think of it as a way to get one more ounce of advocacy in before Diabetes Awareness Month is over. And we need your advoacy. The best part is, you don’t have to even leave your home. If you’re reading this right now, you can make a difference right now. Let’s not only not lose this opportunity… Let’s make the most of this opportunity before it’s gone.

On behalf of myself and all People With Diabetes, Thank You.

Special thanks to Bennet Dunlap, Christel Marchand Aprigliano, and the rest of the Strip Safely team for their help with this effort.
 
 
 

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Things I love about the DOC.

November 26, 2014 – 9:55 am

On Monday, I spent a little time talking about what I’ve learned from the Diabetes Online Community. Today, I’d like to talk a little bit about what I love about the DOC. Think of it as my letter of thanks on the day before Thanksgiving here in the USA.
 

  • This is going to sound sappy (I really don’t care if it does), but I have never encountered so many helpful, supportive, and unpretentious people as I have in this community. That even includes church communities.

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  • It’s pretty safe to say that Wednesday nights are my favorite night of the week. If you don’t know what I’m talking about, join us on Twitter by following @DiabetesSocMed and the #DSMA hashtag beginning at 9:00 eastern time(US), and maybe Wednesday will become your favorite night of the week too.

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  • The way the DOC mobilizes and helps people is inspiring and heartwarming. See Spare a Rose, Save a Child, Strip Safely, and YouCanDoThis Project for starters.

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  • I love reading people’s stories. Whether someone is getting comfortable with an insulin pump for the first time, participating in a clinical trial, handling work and their diabetes or school and diabetes (or both), there’s nothing like watching those accomplishments through another’s eyes. You all suck me in and make me invest emotionally in your lives, and it’s the greatest show on earth.

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  • The global nature of the DOC is incredible. I’m not only talking about people living all over the globe, but also people living all kinds of different lives all over the globe. If you’re new to this community, I think you’ll be surprised by the fact that you’re very likely to find someone just like you. “Me too” is indeed powerful.

 
About four years ago, I was feeling about as low as you can imagine. Today, there is so much for me to find out about and celebrate. Given enough time, I suspect I could double or triple this list without too much trouble at all. There is so much joy and information and advocacy and encouragement out there. I am very thankful for the DOC and what it has meant to my life these past few years.

Help me add to this list: What do you really love about the Diabetes Online Community?
 
 
 

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Some things I’ve learned from the DOC.

November 24, 2014 – 11:09 am

If you haven’t been by this place on the internet before, or if you aren’t up on diabetes talk in general, let me tell you that DOC stands for Diabetes Online Community. Loosely defined as places and people that those of us with whacked pancreases connect with in cyberspace.

There are lots of communities online, and like many others, ours is a place that teaches as well as supports and connects. Here are some of the things that either I didn’t know, or didn’t know very well before I discovered the DOC:
 

  • There are so many people who go through the same things I go through every day. Many of them handle managing their diabetes better than I do, and I’ve learned something from each of those people.

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  • Insulin on Board—I was mostly oblivious to insulin on board before reading blogs from people describing how they account for it in their diabetes management. I had heard of IOB; I just didn’t understand it at all.

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  • The art of the Pre-Bolus—I had never considered pre-bolusing ever, and had never had a doctor suggest it, before I read about it online. I wish I had the link to the first really great blog post I saw about it. I’m the kind of person that is helped a lot by pre-bolusing.

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  • Dual Wave, Square Wave, and Super Boluses—I had seen the options on my pump for square wave and dual wave boluses, but didn’t dare try them because I didn’t know if they would help me, or how they would help me. Reading how others have mastered these, plus the super bolus, has given me the confidence to try them from time to time myself.

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  • How to travel with diabetes—I’ve always thought I was an intelligent travel planner. In reality, I had just been going through the motions and been lucky. After reading/seeing/Tweeting with people in the DOC, I’m a much more savvy packer, and I’m able to get a lot of gear in a small space if I have to.

 
 
As always, nothing written here should be taken as medical advice. Still, there is so much we are still learning from each other. As our community grows, the chances to teach and to learn will grow. I really like that.

So let me ask you: What have you learned from the Diabetes Online Community?
 
 
 

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