Category Archives: Diabetes Blog Week

#DBlogWeek – Day Two. Let’s write a petition!

May 14, 2013 – 8:49 am

diabetes-blog-week

We’re right in the middle of Diabetes Blog Week! Myself and many others are posting for 7 (seven!) straight days. Haven’t heard of Diabetes Blog Week? Get the lowdown by clicking on the banner above. Now, on to today’s subject:

Recently various petitions have been circulating the Diabetes Online Community, so today let’s pretend to write our own. Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) – get creative!! What are you trying to change and what have you experienced that makes you want this change? (Thanks to Briley of inDpendence for this topic suggestion.)

Why yes, I do have an idea for a petition. I would like to see our community as a whole petition the Transportation Security Administration for some changes to their airport screening procedures. Among the changes I would propose:

– Providing agents with clear, up-to-date information on insulin pumps, continuous glucose monitors (CGMs), meters, and durable medical supplies. Including pictures.

– Finding efficiencies in the pump/CGM screening process. If everything goes well, we have to stand (while our traveling companions wait) as we touch our devices, then get them and the devices swabbed. Then the swabbage gets checked out with a machine that tells us whether there is any explosive residue anywhere. To begin with, this takes too long. It also saps resources that might be better used in another part of the screening process. You don’t have time to check for knives and scissors, but you have time to swab my pump and my hands and question me about something that many travelers wear every day? How is that helping to find potential terrorists?

– Providing advocacy for all affected travelers. This is remarkably important. If you’re “randomly selected for additional screening”, once you go beyond the security door, you’re on your own. Why? Is this still America (at least where I live)? Can’t I at least have an advocate in my court who can let my traveling companions know what’s going on? How about an advocate that is well versed in what is appropriate behavior, language, procedures, etc., so I don’t have to be every time I fly? An advocate who, in the event of hypoglycemia during the screening, can advocate on my behalf so I can get access to my juice boxes, Glucolifts, or Honey Stingers?

– And while we’re at it, how about requiring a specific level of training for TSA staff? Meaning, all TSA staff? I’m still waiting for the first time that I’m handled the same way in the screening process on both ends of a round trip flight. I shouldn’t be told to go through the metal detector at one airport, then through the full body scanner in another. I shouldn’t be told that I don’t have to remove my medical supplies from my carry on in one airport, then get yelled at for not removing it from my carry on in another airport on my trip home. TSA staff must be more consistent in how they handle everyone, including People With Diabetes.

So that’s it… Clear information. More efficiency when screening our devices. Advocacy for travelers (why does a murderer get an attorney when they need one, but travelers aren’t represented at all in the screening process?). Specific, consistent training for TSA screeners. That’s fair. And it’s not a lot to ask for. It would help us all to feel better while at the same time feeling safer.
 
 
 

By StephenS | Tagged , , , , | Comments (7)

#DBlogWeek – Day One. To share or not to share?

May 13, 2013 – 8:50 am

diabetes-blog-week

Yay!!! Diabetes Blog Week has officially begun. Myself and many others will be posting for the next 7 (seven!) days. Haven’t heard of Diabetes Blog Week? Get the lowdown by clicking on the banner above. Now, on to the first day’s subject:

Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see?

Well, um… my endocrinologist already reads my blog. Not every day, but enough that if I post something about a terrible low, for instance, I’ll probably get an e-mail within the next week or so.

What do I wish she, and my primary doctor could see about my daily life with diabetes? Probably that my life isn’t perfect, but I’m living. And I’m living a pretty good life. Sure, there are tough days, but I keep on going. It’s not the tough days that define me. It’s getting back up after I’ve been knocked down by this disease that means everything. And if I’m having a hard time getting my BG up into the hundreds or down into the hundreds, it doesn’t always mean I’m screwing up. Sometimes it means I’d be even worse off if I wasn’t trying so hard.

But honestly, when it comes to me and my endo, there’s not much I don’t share. What? What’s that? You’re honest and open with your endo? In what world does this happen?

It happens in a world where your doctor speaks your language. Where your doctor wants to hear what’s going on with you… so if updates are needed in your care, you can discuss them. It happens in an atmosphere where the object of an appointment is both to measure how you’re doing and to discuss what to do in the future to make you better. Such a universe does exist, and I encourage you to find it if you haven’t already.

Now, what do I hope my medical team doesn’t see? I hope my doctors don’t see how concerned I am about my weight. I’m doing what I can to keep from gaining, but my metabolism just isn’t helping me these days. Still, I’m doing what I can. But I could use the help of a dietician. I’m still eating a lot of junk. Anyway, that’s probably the top of the list.

Other than that, my medical team pretty much knows everything. And that’s good. My doctors can help the most when they know the most. It goes without saying (but I’ll say it anyway), two-way discussion without making a patient feel guilty is worth its weight in gold. Hope your medical team is 14 karat spectacular!
 
 
 

By StephenS | Tagged , , , , | Comments (9)

Diabetes Blog Week: Day 7– Super Dia-Heros.

May 20, 2012 – 8:17 am


 
Today is the final installment of Diabetes Blog Week. Special thanks AGAIN to Karen Graffeo at Bitter~Sweet for hosting this inspiring event. Why is it inspiring? Well, for me, I have read many (read: hundreds) of posts that were waaaaaay better than anything I’ve written this week. They were all posts that inspired me. Inspired me to live a better life. To care more about those less fortunate. To advocate, to speak for those who are unable to speak for themselves. To write a better blog.

Thank you to all of the d-bloggers out there who make made my posts look like a grocery list this week.

That said, I’m going to punt on today’s post. I’m going to re-post something I wrote on this subject a few weeks ago.

But before I do, I want to add to the super dia-heros list you see below. In the original post, I forgot to mention the Maryland Transit Authority Police, who helped me through an extremely dangerous low I experienced about a year ago on the subway home. They were fantastic, and they even met me later, off-duty, to deliver my meter and my pump, which I lost in the incident. In short, they saved my life. How can you thank someone enough for that? Can’t believe I forgot them in the original post.

Now, to the previous post:

Super Dia-Heros.

The world needs more Superheros!

I suppose so. But I can think of a few Superheros that I would like to retire… as soon as possible.

The Great Spousal Unit is a Superhero (Supershero?). She’s always got my back. In the middle of a road trip, or in the middle of the night, she’s always there when I have an issue. For all 21 years of this disease, she’s been a rock. I would like to give her a break. She’s earned it after all these years. I don’t want her to worry about me anymore. Without me asking.

The Live-In Niece has been terrific. I’m the first, the only, diabetic she’s ever known. Or known about. She knows nothing of hypoglycemia or ketoacidosis. But she asks a lot of questions. And she never makes me feel bad for being a pain in the ass because I had a low or I’m mad at the diabetes today. Without me asking.

Prior to the Live-In Niece was the Live-In Nephew. My Godson. Probably the relative I’m closest to. And diabetes freaks him out. But when he was confronted by something that freaked him out, he was able to help me. Without me asking.

I’ve had a couple of crappy doctors over the years. But I’ve had a couple of super ones too. That’s you, Dr. Mowry in Cincinnati, who originally diagnosed me after two doctors couldn’t be bothered to take the time; and you, Dr. Pao in Baltimore, who speaks my language and gets me thinking about adjustments to make things better, instead of always staying the same with lesser results. Thank you, thank you.

Thank you Diabetes Online Community. For the first time in I don’t know how long, I feel validated. Can’t tell you how much it meant to find out that others have the same experiences, the same hurdles, the same highs and lows. I not only feel validated… I feel more confident that I can live in this world. That I belong in this world.

Where would I be without JDRF and ADA? Your advocacy has brought us countless advances in care, support, and on, and on, and on. It’s easy to take you for granted. But these two groups are full of thousands of Superheros.

And what about the companies that have developed technology or drugs to help us continue to live a life that means something? Medtronic, Animas, Dexcom, Novo Nordisk, Aventis. That’s right… I’m givin’ props to you, big Pharma. I’ve made it as far as I have in part thanks to you.

There are many Superheros in my diabetic life (Diaheros?). But I would like to retire all of you. I hope that soon, very soon, you can find the time to focus on someone else. Another cause. Or maybe a vacation. In the meantime, thank you sooooo much for being my Superheros.

 

 

 

 

 

 

 

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.

By StephenS | Tagged , , | Comments (0)

Diabetes Blog Week: Day 6– Saturday Snapshots.

May 19, 2012 – 6:38 am


 
Saturday… what a day. Here in Baltimore it is! Preakness Day! Here’s hoping your horse is a winner today. Now, over the incessant drone of the freakin’ blimp outside, here are my Saturday Snapshots for Day 6 of Diabetes Blog Week.

My photos fall into three categories.

First, a couple of diabetes-related photos:

Every PWD who works at a desk has a drawer like this. This should provide enough carb content when those afternoon lows strike. There’s also a candy jar on my desk.

Thanks to the DOC, I found that you can put an infusion set in your leg. And it can work. And work well.

Exercise is a big part of staying healthy for me. This was my first triathlon last year:

Swim…

Bike…

…and Run. Now you can tell that the other photos weren’t staged.

Finally… everyone should be lucky enough to have a great family like mine. Maureen and my darling great niece (yes, I’m crazy over her), born on my 50th birthday:

One more day of DBW left… have a great weekend!

 

 

 

 

 

 

 

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.

By StephenS | Tagged , , , | Comments (2)

Diabetes Blog Week: Day 5– What They Should Know

May 18, 2012 – 7:40 am


 
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.

By StephenS | Tagged , , , | Comments (1)