Tag Archives: diabetes

Into the time machine: If I were talking to myself five years ago…

August 18, 2014 – 9:58 am

Stephen…

I’m back. I know, I wrote to you back at diagnosis, but haven’t been in touch much since. Well, we need to talk again.

I know you’re having a really rough time of it right now. People are beating you up nearly every day with their ridiculous requests and their stigmas and their belief that diabetes is simple to manage. In case you haven’t figured it out by now… It’s not. Likewise, work has been wearing on you for a long time now, and it seems like the cloud that’s been following you around for a long time will never move away.

Well, I have some good news for you: This is going to change.

Certain events are going to occur, and it’s going to seem like it’s getting worse for a while, but trust me when I say it will get better. Like it does whenever things like this happen to you, the change will come from somewhere where you least expect it. To begin with, you’re going to finally give in and start on an insulin pump. When I look at it now, I think that may be the first time in decades you say to yourself: “I don’t give a crap what it looks like, I’m still the same person I was before I connected this thing”. About a year and a half after that, you’re going to hear the term “Artificial Pancreas” for the first time. That’s going to set off a number of feelings and journeys of discovery too. Right about this time too you’ll discover this Diabetes Online Community thing that I mentioned in that letter I sent you at diagnosis. Once you do, it’s going to set off little changes… things that you do that seem little on their own, but start to add up to being a better person who’s more connected to his outside world than ever before.

You’re going to eventually call yourself a diabetes advocate. It’s going to sound weird at first when you say that, but at some point you’ll start to reassess your viewpoint of what an advocate really is. Also, going back to those little things, you’ll start to get involved in causes that will not only help others but will also reinforce your own confidence and sense of self worth, which, let’s be honest, needs a hell of a lot of reinforcement right now. Seriously dude… you are worth more than people are saying you’re worth right now… stop hanging your head. Unfortunately, you’ll find that there are causes that need your help all the time. Don’t worry… just do what you can, when you can do it. Something is better than nothing.

For what it’s worth right now, here’s a little advice:

Stop worrying about everything all the time. You’re not 20, or 30, or even 40 anymore. You can’t fight every battle like it’s life and death. You don’t have the time, and you don’t have the energy to deal with everyone’s crap full time anymore. Let other people fight things out. Use the energy you save for something you have a passion for. I know you’re going to find that passion again soon. And there will be people who need your help. Use your powers for good.

You can learn from everyone… even the people who don’t have your best interests at heart.
People are interesting. They are not all the same. They all have something important to tell you, and they are revealing it almost all the time. Be open to listening. Be open to recognizing that it’s okay if you aren’t the foremost expert on everything. Find out how good it feels to help shine the light on someone else who deserves it. Never, ever forget to say Thank You. Over and over.

Be a little bolder.
Remember your best friend from high school? I know, you miss him. He was the kind of guy who could sell anything to anyone, and did. He was the one who, when the Russian hockey team came to town in the early 80s I think, was the only one locally to get an interview because he bought a few pair of American jeans and handed them out to the players. He made friendships in that instance, and even kept one or two of them until he died. What he did wasn’t crazy, was it? He was just saying, “I’ll try this, and maybe it will work”. That’s what you need to do. Ignore that voice that says you’re going to get yelled at for asking. If you do get yelled at, it will be an indictment of their character, not yours. And you won’t get yelled at. People might even say yes.

Be a little happier.
This is important: Enjoy the moments of happiness you’re granted when they happen. Not everything can be sunny every day. And as much as I hate to be the one to break this to you, you’re not going to live forever. So when something good happens, don’t worry about the evil that’s lurking around the corner ready to jump you. That’s old school Stephen-think. Just enjoy the happiness while it lasts. It’s going to make a huge difference for you if you do.
 
 
I really hope this letter finds you. You need a change. A series of changes. They might seem difficult to imagine, but you’re going to pull it off. I know you will. I support you… no conditions. Now be well and start writing the next great chapter of your life.
 
 
 

By StephenS | Posted in Into the Time Machine | Also tagged , , | Comments (0)

Friday Odds and Ends.

August 15, 2014 – 9:53 am

Happy Friday… I hope the weather where you are is as nice as it is here. I really should be at the beach, or out on the bay fishing. I don’t fish a lot, but if I did, today would be the day to be out there. Anyway, I thought this might be a good time to wrap up the week with a few short bites (or bytes—your choice):
 
 
I’m starting the process to get my four week trial of the Snap pump from Asante. I’ll let you know how it goes. This will be the fourth pump option I’ve looked at. Favorites? I’m keeping that to myself for now.
 
 
The Live-In Niece will soon be the Moving-Out Niece. Rachel and her boyfriend have found a place, and should be moving within the next few weeks. I’m happy that she has a new place to live, and someone to share it with. I’m also coming to grips with the fact that the house will seem… emptier. Is this how empty nesters feel once all their kids move out?
 
 
Don’t forget to wish Karen Graffeo a great run tomorrow. She’ll be taking on the MADD Dash 5K up in Connecticut bright and early. This is her first 5K in four years, and I couldn’t be happier for her. She’s really gunning for that Champion Athlete With Diabetes medal, and by this time tomorrow, she should be basking in the glow of a race well run. So today, send her a Tweet or a note of encouragement and support.
 
 
The latest visit with my endocrinologist went okay last week. My A1c is in a very good range, and… there’s not much else to report. Except that she suggested I dial back my basals over the weekend since I’m more active then. Which is brilliant, and something I should have thought about long ago.
 
 
I am still working on putting together a D-meetup here in Baltimore. This would be a semi-regular get together, and if I weren’t so busy already, this would probably already be a thing. Plus, I have a real worry about letting my hopes get too far ahead of reality. More to come if when this happens.
 
 
What’s your good news today? I’d love to hear what’s happening in your world.
 
 
 

By StephenS | Posted in Like these links | Also tagged , | Comments (1)

Tending the garden.

August 11, 2014 – 10:10 am

I have a small vegetable garden in the back yard. This year, I’ve grown lettuce, green beans, assorted peppers, tomatoes and potatoes, and yellow squash. To get to the final goodness of what a summer garden can provide, I have to do a lot of weeding. A lot. Of weeding. A lot.

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And naturally, that makes me think about living with diabetes.

We’ll have average days, beautiful days, rainy days, sunny days, and super-hot days. But the weeding still needs to be done. During those same days, we need to remember to test, treat, inject, or whatever we have to do to maintain a healthy blood glucose.

If we go through a dry spell, I’ll need to water everything in the garden. If we go through several days of rain, I have to make sure nothing gets damaged by the extra dampness. If my blood sugar is high, I need to exercise and/or drink copious amounts of water to bring the numbers down. If I’m low, it’s juice, glucose tabs, or candy to the rescue. I have to be ready despite the weather or how I feel.

Sometimes the weeds are the creeping kind, that spread out across the garden. Often, they’re the climbing kind, that wrap around my plants and threaten to choke them before they can bear any fruit. Occasionally, an unexplained illness or a bent cannula can threaten to ruin my diabetes that day. Constant vigilance is required to snuff out all threats to a healthier life.

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Why do the weeds want to grow more in my garden anyway? The simple answer is that the soil is better there. It’s been cleaned up and fertilized every spring to help my veggies grow big and flavorful. If I were a weed, I’d want to grow in my garden too. Maintaining a lower A1c is kind of like that too: The better we manage our diabetes all the time, the closer we are to hypoglycemia all the time.

Better soil = Better environment for weeds
Better BG control = Closer to hypoglycemia

But… Just like tending our gardens diligently produces blockbuster crops and tasty, low-carb treats throughout the summer and even into the fall and winter, tending our diabetes with equal diligence allows us the opportunity to continue spending our lives with the ones we love. It allows us the chance to maintain steady pursuit of our dreams. It provides us with an opportunity to grow, blossom, and bear the fruits of a live well lived.

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I hope your summer gardens, diabetes, and dreams are all weed free and full of special moments.
 
 
 

By StephenS | Posted in Additional Inspiration | Also tagged | Comments (2)

Subtle.

August 8, 2014 – 9:13 am

Burnout? No, I don’t suffer from diabetes burnout.

Whenever possible, I try to break things down into simple rather than complex paradigms (actual paradigms, not the Medtronic kind). I won’t tell you that I’ve never felt the effects of the constant testing, injecting, carb counting-ness of life with this chronic condition. But for quite a while now, I’ve had the “Can’t do anything about it, might as well make the best of it” mentality.

I’m pretty good at glossing things over, making them appear to be less than they are. I’m also very good at making things appear to be more than they are from time to time, but that’s usually by mistake. Not by design. But lately, when it comes to me and diabetes, I just do what I have to do, and get through my day. As long as things are going well, nothing seems to bother me.

But something the other day made me think about that assessment.

It was Wednesday night. I came home, feeling fine. I fed the dog and cat, and ate dinner. I knew I needed to do an infusion site change. I cleaned up the kitchen, took out the trash… the usual. I read my e-mail. Listened to the Pandora for a while. Then, at about 8:45, fifteen minutes before the #DSMA Twitter chat, I finally got everything out and started my site change.

I remember thinking, as I started the process with 1.9 units remaining in my reservoir (I know there were more units than that, but that’s another subject for another day), how often I need to do a site change right before #DSMA. Also, how I always seem to have 1.9 units or less showing on my display when I actually do a site change.

That’s when it hit me. Doing my site changes like this really seems to be less about squeezing out the last drops of insulin from my reservoir, and more about the fact that I don’t want to change my site. Ever.

I thought this was happening because I’ve just been living in the moment a lot more in the last few years, enjoying the good things in my life when they happen, and doing the things I need to do only when I need to do them. But this is more than that. I see that now. When I realized what I was doing, I just got this feeling… you know? It was a subtle, yet effective reminder that I know I can’t hide how I feel about it. It almost felt like I got caught telling a big fat lie. Some D-tasks are just more than I want to deal with, so I don’t deal with them until I absolutely have to.

So what do I do now? Go on a pump vacation? I don’t think so. I think that would just allow me to create a new problem somewhere else. Instead, I’ll think about it a bit and then try to do a few things to make the site changes simpler, easier. Maybe pre-fill the reservoirs. Get my infusion sets and other paraphernalia out of my dungeon of a basement and onto the main floor, where I usually perform the change. I don’t know if that would work, but you have to start somewhere, right? Taking a few steps out of the process might speed things up and make them feel less like punishment.

It’s a strange thing when you think you’re handling something well, then you’re confronted with the reality that you’re really not. You’re just ignoring it well. The fact is, I could have a lot worse things to deal with. I need to stay calm and persevere. And get some perspective. And really: If it didn’t bother me to perform a set change every few days, maybe I wouldn’t be as interested in making things better for future generations of People With Diabetes. I’ll take being a proactive Person With Diabetes over a complacent Person With Diabetes any day of the week.
 
 
 

By StephenS | Posted in Diabetes | Also tagged | Comments (4)

Like these links, and keep the D-mojo going.

August 6, 2014 – 8:48 am

Welcome to Wednesday…

I’m going to throw a few links at you today to help you keep your diabetes mojo going strong. I promise: If you click on any of the links below, your requirements in terms of time and effort will be a scant two or three minutes apiece. Quicker if you read fast. Check them out:

You may remember me writing about a U.S. House of Representatives resolution (HR 3710—Medicare CGM Coverage Act) introduced last year. Well, now a bill to get continuous glucose monitors (CGMs) covered by Medicare is making its way through committee in the United States Senate. This one is Senate Bill 2689—Medicare CGM Access Act of 2014. Introduced by Senate Diabetes Caucus co-chairs Susan Collins (R-ME) and Jeanne Shaheen (D-NH), this bill aims to do the same thing: Protect the right of citizens on Medicare to keep their CGM. Make sure you get your senator to get behind this legislation, like, NOW. JDRF makes it easy by providing this link:
https://secure3.convio.net/jdrf3/site/Advocacy?cmd=display&page=UserAction&id=412

Just fill out the form, include your own personal sentiments (like, “I’m going to be Medicare eligible in 13 years… Don’t take away my CGM when I need it most!”). Click Send Now and you’ll have committed an act of Diabetes Advocacy before Starbucks can serve up your latte.

Got an extra minute? There’s also a petition to sign:
http://www.thepetitionsite.com/takeaction/776/978/446/

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Also: The U.S. Food and Drug Administration has proposed new guidance for Medical Device Data Systems (MDDS). Borrowing from the Strip Safely website:

“These are systems that, in the FDA’s words, facilitate “the electronic transfer or exchange of medical device data from a medical device, without altering the function or parameters of any connected devices.” Translation: technology that lets data show up on a device other than the medical device itself. FDA believes that these types of MDDS introduce little additional risk, and the agency is therefore proposing to lessen the regulatory process for MDDS.”

Face it: We would all like to have access, and provide access for our loved ones, to the data from our devices. This is possible, it’s helpful, it’s an idea whose time has come. Agree? Now’s your opportunity to have your voice heard. How do I know they’ll listen? I was contacted by the FDA about comments I posted earlier last year on glucose meter accuracy and post-market inspection.

You only have until August 25 to submit your thoughts. Get the skinny right here:
http://www.stripsafely.com/sample-page/comment-on-mdds/

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Finally… Just in case you forgot about it, don’t forget about the first Diabetes UnConference, taking place out in Las Vegas next March. Brainchild of Christel Marchand Aprigliano of ThePerfectD, it will be a conference of diabetes peers from all over, setting the agenda together in the first hour, and asking and answering questions throughout the weekend. I already have four ideas, at least one of which may have some merit. If you’d really like to attend a diabetes conference by People With Diabetes, for People With Diabetes, this might be for you. I understand rooms are filling up fast. This is really turning into a thing. Find out more about the Diabetes UnConference and register too by going to:
diabetesunconference.com

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So… what about you? Have you read or written anything lately that is awesome? Oh… I just remembered: Kelley at Below Seven just published this month’s list of Best of the ‘Betes blog posts yesterday. Now… Where was I? Oh yes… If there’s something that moved you recently, please be sure to leave a link to it below. I’d love to read it!
 
 
 

By StephenS | Posted in Like these links | Also tagged , , , , , | Comments (1)