Tag Archives: DOC

Some things I’ve learned from the DOC.

November 24, 2014 – 11:09 am

If you haven’t been by this place on the internet before, or if you aren’t up on diabetes talk in general, let me tell you that DOC stands for Diabetes Online Community. Loosely defined as places and people that those of us with whacked pancreases connect with in cyberspace.

There are lots of communities online, and like many others, ours is a place that teaches as well as supports and connects. Here are some of the things that either I didn’t know, or didn’t know very well before I discovered the DOC:
 

  • There are so many people who go through the same things I go through every day. Many of them handle managing their diabetes better than I do, and I’ve learned something from each of those people.

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  • Insulin on Board—I was mostly oblivious to insulin on board before reading blogs from people describing how they account for it in their diabetes management. I had heard of IOB; I just didn’t understand it at all.

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  • The art of the Pre-Bolus—I had never considered pre-bolusing ever, and had never had a doctor suggest it, before I read about it online. I wish I had the link to the first really great blog post I saw about it. I’m the kind of person that is helped a lot by pre-bolusing.

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  • Dual Wave, Square Wave, and Super Boluses—I had seen the options on my pump for square wave and dual wave boluses, but didn’t dare try them because I didn’t know if they would help me, or how they would help me. Reading how others have mastered these, plus the super bolus, has given me the confidence to try them from time to time myself.

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  • How to travel with diabetes—I’ve always thought I was an intelligent travel planner. In reality, I had just been going through the motions and been lucky. After reading/seeing/Tweeting with people in the DOC, I’m a much more savvy packer, and I’m able to get a lot of gear in a small space if I have to.

 
 
As always, nothing written here should be taken as medical advice. Still, there is so much we are still learning from each other. As our community grows, the chances to teach and to learn will grow. I really like that.

So let me ask you: What have you learned from the Diabetes Online Community?
 
 
 

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

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)

#dblogcheck – It’s baaaack.

July 22, 2014 – 9:17 am

Here we are… it’s another D-blog Check-In Day.

Christopher Snider, author at A Consequence of Hypoglycemia, and moderator at the Just Talking Podcast, and also the originator of last year’s edition, has designated today as the day for all of us to leave a comment on each and every blog we visit.

Last year on #dblogcheck day I wrote about the importance of telling your story, being that hand that reaches out into the abyss to pull someone in and make them feel less alone. Today I’d like to talk about the importance of leaving comments.

If you write, think about what it was like the first couple of times you received a comment from someone. Anyone. It meant a lot, didn’t it? It was an instant measure of readership, to begin with. You were no longer posting your thoughts to an empty internet. That measure of validation, that show of support, that initial connection… it’s special.

It’s just as special to someone who’s been writing for some time and wonders if the community has somehow lost track of them. Leaving a note at the bottom of someone’s heartfelt blog post promotes a greater sense of community among all of us. We know the writer is special. I, for one, don’t want to miss the opportunity to tell them.

I started writing in this space about two and a half years ago. Since then, more and more diabetes blogs have popped up from writers all over the world. Those writers deserve just as much (or more) support than I’ve received.

But you know what that means: More writers = more comments.

I know that sounds difficult for some, and I understand… I do. I’ve heard a lot of “My time is so limited” and “I can never think of anything good to say”. I guess what I’m saying is I feel a sort of responsibility to support writers who share their personal stories in a way that challenges me to think more and feel things more deeply. Why? Because I want them to continue writing.

I should also talk about what it means for me to leave a comment on someone else’s blog. I look at this differently than most, perhaps. But to be honest, leaving comments makes me feel better. I didn’t come by this naturally. But I’ve found that it’s great therapy for me.

Especially when I’m feeling down, or when I’m experiencing trouble either within or outside of the diabetes community, as soon as I leave a little comment somewhere, I nearly instantly start to feel better inside. Even when I’m tired and I can’t think of anything witty to say.

So I’ll conclude by first reminding you to leave a comment wherever you visit today. Share your favorites via Twitter using the hashtag #dblogcheck. And second, think about using this day as encouragement to comment more. None of us has the market cornered on great writing (especially me). What you can do is help deliver that measure of validation, and remind someone that what they have to say is really important. It really is, isn’t it?

Finally, I want to ask a favor. I have a confession to make: I haven’t really discovered a lot of new d-blogs lately (this is my time-constraint problem). If you’ve found a blog that you really like, and you can’t think of anything else to say, just say “Check” and leave the address of yours or someone else’s blog below.

And since I haven’t mentioned it for a while… Thank you so much for reading!
 
 
 

By StephenS | Posted in Support | Also tagged , , | Comments (37)

Every picture tells a story.

July 21, 2014 – 9:37 am

 
 
#showmeyourpump
 
 
The Great Spousal Unit was away on Saturday, so I basically did what I usually do when she’s away on a Saturday: I got up early, had a couple of strong cups of coffee with breakfast, visited my favorite farm truck, came home, cleaned the house within an inch of its life, started the laundry, had lunch, Oh… she came home for about an hour and a half… and yes, absence DOES make the heart grow fonder… where was I… yes… I finished up, watered the plants and the gardens, picked up the dry cleaning, stopped in to say hello to my friends at my favorite local place (you know what I mean if you know what the number #147 means), and then I went home to make dinner.

The point is, the unsaid point of all this up to then, for me anyway, was this: I had seen so much bad news on the television this past week that I was happy to disconnect, turn it all off, and just concentrate on me and my happiness for a while. Simply put: The bad news from Ukraine, Gaza, and the anti-immigration factions in America (I think they’ve forgotten that they have descended from immigrants themselves) had me feeling so sad that I didn’t want to hear anything from anyone for a while.

Then I prepared dinner (and it was good– a recipe is in the near future here) and sat down to eat it. I pulled out my iPad, dialed up the Pandora (B.B. King channel), and proceeded to chow down. Some of my stress had gone away, but by no means had all of it dissipated.

Since the iPad was nearby, I started to check out my Twitter feed.

That’s when it happened.

I started to read post after post with the hashtag #showmeyourpump. Of course, this all started with Miss Idaho, who bravely (and why the hell NOT?) wears her insulin pump for the world to see, started to get some non-D world props on NPR and other outlets. I saw photos of people heading out for a run, people on the beach, having dinner, and living perfectly normal lives that just happen to include an external pancreas.
 
 
My reaction started with “Oh, that’s cool”, to “I love that… wouldn’t it be cool if that started trending?”, to something like this:

showmeyourpump

Once again, without even knowing it, the Diabetes Community pulled me up from a very sad, very unhappy place to a place where I was happy and optimistic, even proud that I wear my pancreas outside of my gut. And even though this has been trending for a few days now, even though I’m late to the party again, I can only say:
 
 
Thank you.

You will never know the extent to which you lifted my spirits.

I will support you through thick and thin, forever.
 
 
Thank you.
 
 

On my way to work this morning

On my way to work this morning


#shomeyourpump
 
 
 

By StephenS | Posted in Additional Inspiration | Also tagged , , , , , | Comments (1)

Back in the day.

April 23, 2014 – 1:10 pm

Every once in a while I think back to the initial days before and just after my diagnosis. Dr. Mowry correctly diagnosed me with Type 1 diabetes at the end of January, 1991. After a few days in the hospital and some quick diabetes education, I was off to handle this chronic condition on my own. This recent post made me think about that diagnosis, and mostly, about my first few years living with Type 1.

One of the first things I remember thinking about diabetes was, after they gave me my dosing instructions (something like 26 units of Novolin 70/30 insulin in the morning, 22 at night), doing the quick math to determine I was going to be injecting myself 730 times every year, and 732 during leap years. That was my wake-up call… that was the first moment I knew for sure that this was different.

The diabetes educator I met with in the hospital was the first and last diabetes educator I’ve ever met with. No real reason for that, other than no one else ever said to me, “You should go see a CDE”. So I never did.

I remember getting the “five years to a cure” pep talk while I was in the hospital. I didn’t believe it. I remember giving others (mostly my Mom and the rest of the family) this tidbit of information in a sort of sound bite fashion, mostly so they didn’t worry, and so I didn’t get their pity. I still don’t know just how to handle that from people. But deep down, I knew from the beginning that my diabetes wasn’t going away. Nobody was going to be able to repair my broken pancreas.

I did read a lot about diabetes early on, to find out as much as I could about the disease. But I didn’t really know where to look for the latest about treatments, technology, and research. So, when I learned everything I thought I could learn about diabetes in general, I stopped reading. I might have picked up a JDRF or ADA publication from time to time in my doctor’s office. But how much of that can you read while you’re waiting? And when I was newly diagnosed, it didn’t occur to me to get any of that information at home. Besides, it all seemed so clinical back then. Eat right, exercise, take your insulin. Rinse, repeat. After I read that so many times, I just mentally turned it off.

I was going through a very stressful time at my job in those first few years. In a way, this was both a blessing and a curse. A blessing in that being so involved with work (about 60 hours per week), I didn’t have time to be angry or feel sorry for myself. I just had to move from task to task… that’s all I had time for. And therein lies the curse: Diabetes took a back seat from day one. If I was alive, I thought I was doing fine. Until my next A1c result. After the result came in, I’d feel bad for a couple of days, and then it would be forgotten until the next trip to the doctor.

Making so much time for the non-diabetes part of my life also meant that I wasn’t taking time to get up to date on drugs and therapy. I started my D-education in the hospital at diagnosis, but I didn’t get a follow up on anything for another 11 years. So, eleven years after diagnosis (2002), I was still injecting the same insulin at the same time every day, in the same amount. Regardless of my diet or level of exercise, never anything different. I knew that exercise could lower my glucose, and too much food could raise it, but it never occurred to me to make adjustments to my insulin dosage as a result of either of those. No one ever told me I could or should do that. And I couldn’t understand why my A1c was always crappy. How crazy is that?

I think I really could have used a mentor at that point in my life. I’m not sure how I would have received that mythical person then, but obviously, I know now how important a mentor can be as an educator, a cheerleader, a sounding board, and someone to help talk you off the ledge when times are tough.

Every time I think about it, I’m really blown away at my utter lack of diabetes knowledge in the first decade-plus of my journey with this condition. If you’re newly diagnosed, I hope you find that mentor. I hope you stay as up-to-date as possible on the latest medicine, therapy, technology, and research. Don’t forget that compared to your day of diagnosis, you’re pretty healthy right now, and you probably feel a lot better too. Don’t ever give up. Don’t ever stop learning. If this old dog can learn new tricks 23 years after diagnosis, I know you can too.

Don’t forget to pay it forward. Someone out there is right where you were in those first few days or weeks or years. Help make their first few steps sturdier, easier, more sure. JDRF has a mentor program that will allow you to help newly diagnosed PWDs feel less alone. Of course, when you need help, don’t forget to reach out to someone who can help you navigate stubborn BGs and difficult emotions. We all need help from time to time. In the meantime, remember to enjoy the vibrant, fulfilling life you were always meant to live, even if diabetes won’t go away. You deserve it.
 
 
 

By StephenS | Posted in Into the Time Machine | Also tagged , , , | Comments (3)