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.

Are you listening, America?

I like to tell people that I’m fiercely independent.  I’m not a republican or a democrat (note the non-use of capital letters).  I don’t subscribe to political ideology, and I plan to stay that way until the end.

So now the Supreme Court is considering one of the most politically charged arguments in decades:  the case for, or against, the Patient Protection and Affordable Care Act.  Or, at the very least, the case for or against the provision in the law that creates a federal mandate that requires everyone to purchase health insurance.  There are a lot of other things in the law, which can be argued forever, but if you’ve been following the news at all recently, you know that the questions are:  Is the mandate constitutional?  And if the mandate is unconstitutional, is the entire law unconstitutional?

I know that one side of the political spectrum wants the law abolished, and the other side would like to keep it.

Well, I don’t know how the court will decide.  But I do know how to add and subtract.  And I have a pretty strong sense of fairness about things.

I know that if the law is struck down, the federal deficit will go up.  Why?  If I’m not paying a premium on insurance that covers me, or me and my family, what happens when we get sick?  We go to an emergency room at a public hospital, and the government picks up the tab.  And that’s before we talk about Medicaid.  Did you know that in 2009, 5 million people lost their health insurance?  And at least 3 million of those people became eligible for Medicaid.  In 2010, another 5 million lost their coverage.  Estimates are that about 2 million of those became eligible for Medicaid.  Who pays for Medicaid?  Our state and federal governments do, thanks to our payroll deductions.  That means that if the law goes away, the people who claim to hate deficit spending and all of the supposed “freeloaders” using up entitlement money in the budget will be responsible for putting, or keeping, millions on Medicaid.  I don’t know politics, but I know that adding 5 million potential Medicaid recipients won’t close the budget gap.  Especially if at least some of those 5 million could be paying for their own insurance, if they could get coverage at a decent cost.  I read a quote somewhere recently:  the arithmetic trumps political ideology.

Then there’s the question of fairness.  I’m enrolled in what I think is a great plan through my employer.  Even with my employer-sponsored coverage, I still have a sizable out-of-pocket expense every year.  I can’t even imagine what the cost is to deal with getting coverage on your own, or paying all of the expenses of your care yourself.  Those of us with type 1 are fully aware that there’s nothing we could have done to prevent this disease from invading our bodies.  And we know that we really don’t have a choice when it comes to things like how much insulin we need (need, not want) how many test strips we need, how often we need to see a doctor.  How fair is it that because of where you live, or because of your employer’s financial distress, or because of your “risk factors” concerning a disease you can’t predict, you are denied care while I am not?

I mean, I worked hard to get where I am, and I’ve earned what I’ve received.  But couldn’t we talk about how to make things a little more fair, without breaking down into hate mongering?  We’re not going to make things perfect… but we can’t make it better unless we strive for better.  For everyone.  No exceptions.

This is the one about lows.

Went to work on the fence after breakfast yesterday.  Joining me after a while was a 16 year old neighbor (kids will do almost anything when there’s money to be made… and that’s the way it should be).  Nearby were The Great Spousal Unit and The Live-In Niece, who were doing yard work.  Just before noon, Maureen went to run a few errands.

Now, I made sure to under-, not over-bolus at breakfast, knowing that I would be working hard on an 80 degree day.  But the life of someone with type 1 is full of times when the best laid plans are messed up by an uncooperative pancreas, metabolism, pump, (choose your word here).  At about 12:00, I started to get that feeling.  Nothing felt right.  I had to reposition myself multiple times to try to complete even the simplest of tasks.  And before I knew it, 5 minutes to wire a section of fence to a post became 15 minutes.  By now, the 16 year old is looking at me like I’m a 95 year old who can’t get it together, and I’m thinking, “If I can just finish this task, we can break for lunch”.

That’s when Rachel happened by and asked, “It’s a little past noon, are you guys gonna get some lunch?”.  And I gave her that look.  The one that says I’m too proud to ask, but can you please help me?  The one that completely freaks her out.
 
“Uncle Stephen, do you need me to get you some juice?”  I said no, we’ll be finished here soon, and we can have some lunch, but she didn’t hear me.  Because she was getting juice.  And before I knew it, she was back and I was drinking it.  Crisis averted.

What I hate isn’t going low.  It’s the fact that your mind checks out at the very time the rest of your body is screaming for help.  Then there’s the whole macho guy thing, where I know I’m getting worse, but I can suck it up and get through this, then medicate. And I don’t like relying on anyone else to come to my rescue.

This is how most of my lows are, when the bg is lower than 65 or so.  Not horrible, but not without some danger.  I’ve been working on it.  I know that I can’t always see the lows coming… no one can do that.  But I have a set of procedures so to speak, something that will (hopefully) be instinctive in these situations, even if my brain is already taking a break.  It works, most of the time.  But yesterday, because of the heat, because I was already sweating, because I didn’t stop working immediately, because I couldn’t remember all of the steps I had worked out in my head, because, because, because, I will still keep working on it.

Perfection isn’t possible… but improvement is always worth the effort.

 

Ahhh… The Gym.

Okay, so after a week of traveling, baseball games, overeating (over-carbing), drinking, and general celebration around my birthday and my great niece’s birth day, I finally made it back to the gym today.

And here’s the thing:  I liked it.  I mean, I don’t enjoy getting up before 5:00 a.m., getting dressed, feeding the dog & cat, taking my meds, and testing.  But once I got there, slipped into the pool and took off, it felt great.  Every long stroke, every flip turn, all of it.  And I saw almost all of my 5:30 friends from the gym too.  Those hearty souls who get out of bed and do the same thing I do 3 or 4 times each week.  It was nice to hear them say “welcome back”. 

Maybe I get more of an endorphin rush than others.  But even after feeling like I gained 25 pounds in the last week, it still felt great to get Friday off to such a positive start.

Flying Blind

So the department I work in had a little get-together after work yesterday. Have a drink, socialize, etc. No big deal. I decided to go over, but purposely left my Contour meter (and the book I’m reading) behind at my desk. I was only going across the street… I could go back and get them after I was finished.

Well, you guessed it… I forgot and left it behind. By the time I realized I’d forgotten it, I was on the subway headed home. What’s worse is that it’s my only meter. No backup. After thinking for a minute about going back to get it, I decided to leave it behind. I would be flying blind all night and into the morning.

I thought, “Hey, no big deal– I did this all the time for the first 17-18 years of my diabetes. I mean, I went years without testing. I can handle this”. And I did.

But here’s the thing: I’ve gotten sooo used to testing 4-6 times every day that without the meter, I worried constantly. I don’t know if it was because I needed to know I was okay, or if it means that my meter has become my crutch.

At any rate, we were reunited this morning, and all is right again in the meter-reading world. Fasting BG: 106.
Note to self: Get a backup meter. now.

Hello from Baltimore

Welcome to another blog from a type 1 diabetic.  I’m not sure I’m doing the right thing in starting this blog, but after posting comments on several sites in the last few months, I started feeling strange about remaining an anonymous face in the crowd.  So here I am!

My goals are modest.  My rules are few:

1. Don’t expect to be read.  Don’t expect to get comments.  I’m doing this to keep a written record of my life, not to be a web star.  Stay humble.  Rinse.  Repeat.

2. Where I can, be an advocate for others.  Not a necessity as a blogger, but I need to remember that it’s not always about me.  And there are always people who need help more than I do.

3. Enjoy

I’m starting this on my 50th birthday!  Not only that, but my closest living relative, my nephew, became a father today!  Let’s celebrate all of our milestones.  It’s great that we’ve all gotten this far.  And we’ve all got a lot more to give.  Let’s try to keep the proper balance between the highs and lows in our lives.  Let’s keep searching for, and when we find it, keep living in, the happy medium.

Stephen Shaul
April 9, 2012