Tag Archives: type 1

Diabetes Blog Week: Day 5– What They Should Know


 
It’s day 5 of Diabetes Blog Week, and today we’re answering the question: “What is one thing you would tell someone that doesn’t have diabetes about living with diabetes?”.

Kind of a hard topic to put into words, but it’s a good exercise for me. Because occasionally, I’ll get this random, fleeting moment when someone asks about my diabetes, or someone is confronted with my diabetes, and I have a short window of time to say something insightful about it.

I need a diabetes elevator speech.

In business, or in real life (IRL), when you’re on the elevator and an important executive; or a potential client; or an inquisitive member of the general public steps in and asks about your insulin pump, you’ve only got a 20-30 second window to impress. So you go to your elevator speech. Something that briefly says who you are, what you’re about, and where you’re going. Prepared in advance, memorized pretty much word for word, delivered like a champion.

How to begin? Maybe I talk about how I’m a type 1 diabetic, which means my pancreas is messed up and doesn’t work properly anymore. And it won’t work properly again. No need to go into that Islet of Langerhans thing. We’ve only got a short ride, right?

Have to mention the pump. I have to have insulin to survive, and the pump works pretty well in place of the thing that used to serve the purpose.

There are the everyday issues. High BGs, low BGs, eating, exercising, measuring carbs, keeping the weight in check. That’s in addition to work, relationships, family.

And people realllly need to know that insulin isn’t a cure, and not everyone has the same access to care, drugs, and equipment that I do.

Ready? Here’s my diabetes elevator speech:

This? Oh, it’s my insulin pump. I’m a type 1 diabetic, which means my pancreas is permanently broken and I need insulin to survive. This thing costs a fortune, but it really does the trick. I worry all the time about the people who have the same curse that I do, and don’t have access to something like this to help them stay alive. Daily struggles? Sure, I’ve got them. Who doesn’t? But overall, I live a pretty normal life. And I’m not going anywhere for a long time.

That’s What They Should Know, Charlie Brown….

 

 

 

 

 

 

 

A Disclaimer
I have no medical training. If you consider anything written here as medical, legal, financial, or any other kind of advice, you’re out of your mind. Please speak to a learned professional before making any changes that might affect your health. Any of the original content found on this site is my property and should not be reproduced, copied, or otherwise used without the author’s expressed written consent.

Happy Cinco de Mayo.

A few random thoughts on this Spring Friday in May.  Happy early Cinco de Mayo!

  • Glad to reach another Friday.   It’s been a busy week, but I made it to the gym on schedule.  Now if the weather can finally hold out, I’ll be outside on the bike for a good ride tomorrow.  Only 5 more weeks until my 150 mile weekender, and I am sooo not ready yet.
  • I too was on the glucose roller coaster Thursday.  6:00 BG:  71.  Had two slices of toast and butter for breakfast.  12:00 BG:  271 (!).  Had a low on the subway home… ate 3 of my favorite candies before I reached my stop (I carry 4 in my pocket all day, every day), 6:15 BG:  84.
    It’s just a number, it’s just a number, it’s just a number…
  • Also, if you live in Maryland (and you’re actually reading this), there’s a Type 1 Toolbox event hosted by St. Joseph’s Medical Center in Towson, on Tuesday at 7:00.  Click here to get all of the information.
  • Finally, here’s a photo I took about a week ago.  This is the reason why we’ve kept that big azalea next to the house all these years, despite my gripes about how crappy it looks the rest of the year:

Spring at the homestead…



Also, I should have more news on my search for an Adult Type 1 support group next week.  I’m on a mission now that I’ve written about it.

Enjoy the weekend!

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.

 

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

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