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.

Diabetes Blog Week: Throwback Thursday– What brings me down.

May 18, 2017 – 8:57 am


Diabetes Blog Week is just like it sounds… diabetes bloggers all over the world, blogging on daily topics for an entire week. Or, in this year’s case, for five days. To find out all about Diabetes Blog Week and to sign up, CLICK HERE.

Are you ready? Here comes Thursday’s edition:

Today let’s revisit a prompt from 2014 – May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope? (Thanks again to Scott for this 2014 topic.)

It’s true, Scott is fantastic, because he’s a nice guy and he looks at things in ways I often do not. At this stage of my life, I find that somehow comforting. I’m no longer intimidated by what I don’t understand.

Now, to the subject at hand. Like I stated in my post back in 2014, what brings me down most is watching others deal with their inner demons. At times, depression can be a debilitating chronic illness that makes life as much or more difficult than living with diabetes.

There’s a reason why I don’t watch many dramas on television these days. Let’s face it: the best dramas are the ones where the writers ramp up the tension as high as possible for as long as possible before the show’s climax. I have trouble feeling that tension for 55 minutes without any letup. It’s because even though they’re just characters in a TV show, I feel empathy for those feeling the tension, and I have trouble shaking that.

If I feel anything else emotionally about living with diabetes, it’s probably the guilt over the burden I feel I’m placing my loved ones under because of my diabetes. I felt it years ago when I couldn’t afford groceries, but I needed to order diabetes supplies and drugs to help me stay alive. I feel it now whenever I’m low and I can see the concern on their faces.

And even I am prone to the occasional bout with burnout. Who isn’t? There are times when I try not to think too much about it, and just do what I need to do until I feel okay again.

In fact, that’s how I often cope with these things. I don’t know how healthy it is to handle situations this way. But sometimes, I just focus on the next 15 minutes, and not on anything else. I can handle fifteen minutes. Thinking about everything all the time is asking too much.
 
 
Maya Angelou once said,

We may encounter many defeats, but we must not be defeated.
 
 
Coping is not a cure. But if we’re able to cope long enough, we can hopefully ease that concern of feeling defeated. We’re not meant to live a life full of drama and tension. Here’s hoping your days with diabetes are instead full of peace and happiness. Or loud music and happiness… as long as you’re happy, I’m good with either one.

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Diabetes Blog Week: The Blame Game.

May 17, 2017 – 6:32 am


Diabetes Blog Week is just like it sounds… diabetes bloggers all over the world, blogging on daily topics for an entire week. Or, in this year’s case, for five days. To find out all about Diabetes Blog Week and to sign up, CLICK HERE.

This is my 6th year participating in Diabetes Blog Week. The week is rolling along pretty fast! Today: Step up everyone, and get ready for The Blame Game.

Having diabetes often makes a visit to the doctor a dreaded experience, as there is invariably bad news of one kind or another.  And sometimes the way the doctor talks to you can leave you feeling like you’re at fault.  Or maybe you have a fantastic healthcare team, but have experienced blame and judgement from someone else in your life – friend, loved one, complete stranger.  Think about a particularly bad instance, how that person talked to you, the words they used and the conversation you had.  Now, the game part.  Let’s turn this around.  If you could turn that person into a puppet, what would you have them say that would leave you feeling empowered and good about yourself?   Let’s help teach people how to support us, rather than blame us!  (Thank you, Brian, for inspiring this topic.)

First of all… In case you haven’t read my post from last week, I’ll let you click on this link to find out how terrific my endocrinologist is.

I’ve got a fantastic endo. But the two that I had worked with prior to this one definitely fall into the judgement and authoritarian figure categories. One was female, one was male. Both were awful.

I remember one of my previous endos, who would make me wait in the waiting room for an hour and a half, then have me spend 20 minutes with medical students who knew next to nothing about diabetes. After that, I would get about two minutes with her, just enough time to get new prescriptions written. When that happens, there is no time for deep conversations or questions and answers. How can you learn anything about your patients this way? I would always walk away from those appointments feeling like I didn’t matter, and my A1c results reflected that.

Another endocrinologist got red faced when I questioned why he doubled the dosage of my high blood pressure medication without doing a check of, you know, my blood pressure. I told him my primary doctor thought doubling my dosage was dangerous, because I had been in a good range up to that point on the dosage I was at. He looked me in the eye and said, “I am the doctor. Your job is to do what I tell you to do!”. Yeah, no.

I think I would actually enjoy turning those two into puppets, and completely changing their demeanor toward their other patients.

I would love to turn the grumpy my-way-or-the-highway doctor into Big Bird from Sesame Street (Big Bird is sort of a puppet, right?). Regardless of my questions, Dr. Big Bird could help calm me down and be understanding when I’m not so sure about my next steps. Just what we need sometimes.

It would be really cool if I could turn my overscheduled endo into Bert, of Bert and Ernie fame. Bert is always organized, and he prefers to know about who he interacts with, rather than just letting Ernie handle everything. A time and a place for everything for Bert. The more time he makes for others, the happier the story ends.

Truthfully, I don’t usually bandy words about with doctors who don’t get it. My time is too valuable. In the case of those other two endocrinologists, I let my feet do the talking. But…

Wouldn’t it be great if we could just change bad care behavior by turning a doctor into a beloved puppet?

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Diabetes Blog Week: The Cost of a Chronic Illness.

May 16, 2017 – 6:12 am


Diabetes Blog Week is just like it sounds… diabetes bloggers all over the world, blogging on daily topics for an entire week. Or, in this year’s case, for five days. To find out all about Diabetes Blog Week and to sign up, CLICK HERE.

This is my 6th year participating in Diabetes Blog Week. I am happy and honored to participate again. Today’s topic: The Cost of a Chronic Illness.

Insulin and other diabetes medications and supplies can be costly.  Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage.  So today, let’s discuss how cost impacts our diabetes care.  Do you have advice to share?  For those outside the US, is cost a concern?  Are there other factors such as accessibility or education that cause barriers to your diabetes care?  (This topic was inspired by suggestions from Rick and Jen)

To be sure, cost is a factor when it comes to living with diabetes. As I’ve noted before, I’m one of the really lucky people who has a good job that comes with a good insurance plan. I have access to an insulin pump, insulin to put in it, and a continuous glucose monitor.

And I still spend about $3,000 out of pocket for drugs, infusion sets, reservoirs, doctor co-pays, and countless other diabetes-related items every single year.

That’s enough money to take a really nice week-long trip to Europe. It’s money that could have been spent on my nieces or nephews. Money that could have helped fund even more research toward a cure for diabetes.

And I’m one of the lucky ones. Others in the United States don’t have access to even good food, let alone good tools to help them take care of their diabetes. That’s because so many in this country have the power to withhold that right from our citizens, and are comfortable with doing so. They equate health with worthiness. There’s a special place in hell reserved for people who are comfortable with doing that.

That said, I’ve now spoken with at least two people living outside the USA, who have helped me understand that their health care systems aren’t exactly fantastic either. Either coverage is spotty around the country, or there is a sizeable tax supporting the universal health care they enjoy. The one thing they do enjoy is the right to a certain amount of basic medical care. The one thing we’re in danger of losing in the USA is the right to a certain amount of basic medical care.

What I’ve learned is this: there are still people struggling to afford the basic needs of living with diabetes. And there’s still a lot of education needed to get everyone to the point where they understand that taking care of everyone helps to make their country better, wherever they live.

I fear the cost of living with diabetes will only continue to grow. For the people and companies benefitting from rising prices, there’s no reason to shrink the cost.

Our ability to convey the compelling, absolute, time sensitive necessity of caring for everyone living with every type of diabetes, regardless of what our insurance policies or bank statements look like, wherever we live, could make a life and death difference for millions over the coming decade.

That kind of message is worth the cost.

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Diabetes Blog Week: Diabetes and the Unexpected.

May 15, 2017 – 6:35 am


Welcome to Diabetes Blog Week 2017! Diabetes Blog Week is just like it sounds… diabetes bloggers all over the world, blogging on daily topics for an entire week. Or, in this year’s case, for five days. To find out all about Diabetes Blog Week and to sign up, CLICK HERE.

This is my 6th year participating in Diabetes Blog Week, and I’m probably the least prepared this year that I have ever been. Chalk it up to a crazy work schedule and even crazier things happening at home. But, hey, everyone deals with that kind of stuff. No excuses… I love Diabetes Blog Week! Let’s get this party started with our first topic:

Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random.  What are your best tips for being prepared when the unexpected happens?  Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected? (Thank you, Heather, for inspiring this topic!)

I have to confess that I’m not really very good when it comes to the unexpected. Oh, I think I’m really good at handling diabetes curveballs (an American baseball reference) in the long run, but when those unexpected happenings happen? I freak out. I overreact.

I’ll just pause for a moment while you get over your shock…

I know, I don’t usually seem to be the kind of person who gets upset over something. And it’s true, I try to be Mr. Even Keel most of the time, and let’s face it, this blog is named Happy Medium for a reason. But when something unexpected happens diabetes-wise, I’ve been known to react in a less than rational manner.

I’m no psychologist, but I think that’s kind of a coping mechanism. Because once I get over the shock, and scream about it (and even pout a little), I get down to the business of solving my problem.

And how do I do that? I usually start by thinking about what is absolutely necessary. Do I have insulin? Do I have a way to get it into my body so I can survive? As long as the answer to those two questions is yes, I know I’ll be all right for a while.

Then I move on to the specific problem at hand. Dexcom receiver not working? A few months ago, I was perfectly okay with that. I am still here, and I’ll likely be here until a new one arrives. Let’s call the company and get the new receiver here as soon as possible.Side note: this actually happened a few weeks back.

Unexpected lows two nights in a row? Very frustrating, but guess what? I survived. Now I know to be careful before I go to bed, and make sure I set the Dexcom alerts to the loudest setting possible, just in case I need to be woken in the middle of a deep slumber. Side note: this happened a couple of times in the past year.

There’s also something else I do. The Great Spousal Unit has made a point of discussing these scenarios after they occur, and discussing either possible solutions or possible ways to handle them to make them less stressful. This helps keep these situations in perspective for me, and helps us both work through these situations so we both know what to expect, and we both know how to handle them the best way possible.

Let’s face it… if you live with diabetes, expect the unexpected. But just like living with diabetes, everyone has a different way to handle the unexpected. And that’s okay. Find what works best for you. Talk to others to find out if they have found successful ways to deal with the same scenarios. And most of all, don’t blame yourself. If you have trouble with that, it’s understandable. That’s the time when friends and family can help.

The unexpected will happen. You are not alone. Make sure the most critical things are accounted for. And you will figure out the rest.

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I admit it… I’ve got a great endocrinologist.

May 11, 2017 – 9:22 am

I like my endocrinologist. There, I said it.

Endos are sometimes a source of dread, or frustration, and some people wind up having to explain a lot about newer technology or drug developments to theirs because, let’s face it, diabetes changes sometimes move faster than their doctor.

But I don’t experience any of that. My last appointment a couple of weeks ago included the typical A1c, and a little blood work. Cholesterol, kidney function, that kind of thing. Vital signs, download of the pump data. Everything checked out okay, though I’m carrying around slightly more calcium than I should be. Who knew you could have too much?

We spent the rest of the time talking about a clinical trial I’m considering, about insulin pricing, and about a recent NBC Nightly News story on a family that peruses Facebook groups to find insulin their child needs, trading insulin their family’s insurance covers but their child is allergic to (“I wish some of my patients would ask about freebies… I have lots of samples!”).

Yes, she told me that she wished more of her patients would ask about insulin samples, if that’s what we’re even calling them now. Funny, I didn’t think to ask why she doesn’t suggest freebies for her patients. I’ll put that on the list to ask her next time.

We talked about starting on my Dexcom, since I was only about two weeks in when I saw her the last time. I told her, honestly, that wearing it on my arm has made it seem far less intrusive than if it were in my midsection. Which, by the way, is part of my trepidation of doing this clinical trial, because I’d be required to attach both the pump and the CGM around the middle of my body for the duration of the study.

I also mentioned that the CGM has given me real confidence that my basal rates are still very good, because once my trend graph lands in a good place, it tends to stay there for hours at a time. “But you’re going to let me know if you start training for something again, right? I remember that’s when you’ve had real trouble in the past”.

She knows me well.

We also talked about Dexcom Share. I don’t have an Apple phone, or a Pebble watch, and I’m not sure if the G5 is compatible with that anymore. We don’t agree on everything. But I trust her judgement enough that when she suggests something, even if I have questions, there’s a pretty good chance I’m going to do it and do it with gusto, because I trust her judgement that much.

Working with a medical team you can trust means a lot. The give and take between patient and doctor is a relationship that requires a fair amount of nurturing. And it’s changed over the two and a half decades I’ve been living with Type 1 diabetes.

But when it works out, the end result is terrific. It happens when both sides of the conversation engage freely and openly. It’s really great being with People With Diabetes, because they just get it. I consider myself quite lucky because I have an endo who gets it too. If you can’t talk about diabetes with another PWD, or your endocrinologist, who can you talk about it with?

I feel like I’m healthier, and making better, more well informed decisions than I’ve made under any other medical care team, endocrinologist or not. Finding people who help you with your diabetes and your diabetes knowledge are worth the effort. YOU are worth the effort. And I support you… no conditions.

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