Monthly Archives: May 2015

#DBlogweek Day 1: I CAN.

May 11, 2015 – 9:04 am

DBW2015
This is the sixth year of Diabetes Blog Week, started by Karen over at Bitter~Sweet Diabetes. All of us diabetes bloggers are given a subject to write about each day during this week, and after we publish each day’s installment, we’ll go back and link our posts on her site. Want to know more? CLICK HERE.

Day one… here we go! Our subject today is: I can.

In the UK, there was a diabetes blog theme of “I can…” that participants found wonderfully empowering. So lets kick things off this year by looking at the positive side of our lives with diabetes. What have you or your loved one accomplished, despite having diabetes, that you weren’t sure you could? Or what have you done that you’ve been particularly proud of? Or what good thing has diabetes brought into your life? (Thank you to the anonymous person who submitted this topic suggestion.)

Well, there are a lot of things I can do. But to understand what I can do now, I think it might help to understand what I couldn’t do before.

After my diabetes diagnosis, I was unable to bring myself to check my blood glucose on a regular basis. I didn’t like poking my finger with those awful seemingly steroid-induced-spring-loaded lancing devices I used back in 1991. Plus, I admit: I didn’t like checking in public, and I was in public a lot back then. But now: I check all the time, wherever I am and whomever I’m with.

I think there were two things that made the difference for me: I stopped using long-acting insulin entirely, which meant I had to have better knowledge of where my BGs were at all times. And I realized that if I didn’t care much about my diabetes and doing what I needed to survive, how could I expect anyone else to care either?

Plus… the Diabetes Online Community helped teach me that I am worth whatever it takes to be safe and healthy, every minute of every day. I can’t begin to tell you how much that meant.
——————————————————————————————-

For the longest time, I was unable to talk about my diabetes openly. Part of that was the feeling that I didn’t want to be seen as “not normal” (nobody is that kind of normal anyway), part of it was that I didn’t feel very good about how I was handling my diabetes (with good reason), and part of it was I didn’t know how to talk about diabetes in general, and my diabetes specifically.

Today, while I’m still not perfect, I communicate about diabetes all the time. Whether it’s here or another website, on Twitter, at conferences, or anywhere else, I talk freely and openly about diabetes in general, and my diabetes specifically.

I think that’s mostly due to how much I’ve learned in the past few years, from so many people who are so much smarter than me. And by reading a lot. And by listening to my endocrinologist. And by participating in clinical trials. I still feel like there’s a lot that I don’t know… but knowing as much as I do right now has made me more confident when it comes to talking diabetes.

——————————————————————————————-

Finally… For the first 20½ years that I spent living with diabetes, I knew maybe two other people living with diabetes. I didn’t know about the Diabetes Online Community, Twitter chats, blogging, or anything patient advocacy related. It was me and my diabetes against the world.

Eventually, in 2011, I found my first diabetes blog. I found others, of course, and I saw the warmth and encouragement that came from this growing worldwide group of people. I observed their incredible bravery, their creativity, and their selfless advocacy on behalf of many who are marginalized, bankrupted, and discriminated against for no other reason than the fact that their pancreases gave up on them. I wanted to be like the people doing this amazing work. I still want to be like them.

So I started writing a blog. I went to a couple of conferences. I participated in clinical trials. I got up and spoke for everyone living with diabetes at a public workshop at the U.S. Food and Drug Administration.

Now, I’m not only concerned with knowing as many people living with diabetes as I can. I’m also concerned with helping others, who are just finding me and my friends online, to meet as many people as they can. Doing this makes me very happy.

——————————————————————————————-

The answer to the I CAN question is: I can do a lot. Without the help of so many others, I might not have learned so much. With the help of so many others, my learning will never stop. And my ability to champion for others will only grow.
 
 
 

By StephenS | Posted in Diabetes Blog Week | Comments (11)

Like these links: Diabetes UnConference, Diabetes Blog Week, and DSMA!

May 6, 2015 – 9:13 am

I have a few important things to let you know about today… especially if you haven’t seen anything about them yet. If you have, think of this as a list of friendly reminders.
 
 
First… Early Bird registration is now open for the next Diabetes UnConference in Las Vegas, March 10-13, 2016. The Diabetes UnConference brings together adults living with diabetes, who discuss the various psychosocial issues that PWDs deal with on a regular basis. My experience at this year’s UnConference was, in a word, special. I’d love it if it could be the same for you.

Also, as I mentioned here earlier, next year’s UnConference schedule will include sessions for T3s… Type Awesomes… those who love and support us and deal with a lot of issues too. There will be opportunities for both People With Diabetes and People Without Diabetes to interact, but there will also be a separate space and special sessions so People Without Diabetes can experience the UnConference too, sharing among their tribe, peer-to-peer (still adults only).

And, in case you haven’t heard yet, there will be an East Coast version of the Diabetes UnConference next year too! It will happen sometime in the fall, but I’m not sure I can give you any specifics yet (mostly, because I don’t know them). But if Las Vegas isn’t your thing, or it’s just too expensive to get there, look out for news on this second Diabetes UnConference soon.

To register for Vegas, or to keep up on the latest on everything UnConference, CLICK HERE.
 
 
Second… We are on the cusp of another exciting Diabetes Blog Week! #DBlogWeek is teed up and ready to go, beginning next Monday, May 11 and continuing through Sunday, May 17.

Karen Graffeo of Bittersweet Diabetes fame started Diabetes Blog Week five years ago (five!) as a way to get diabetes bloggers to participate in something that would bring them together, by sharing blog posts on a different subject for seven straight days. It’s a great way to find new blogs, and if you’re thinking of starting one yourself, it’s an awesome way to start. The more the merrier.

Seven days, seven posts (don’t worry—no one is going to hunt you down if you miss one). To get all of the information on Diabetes Blog Week, CLICK HERE.

Karen… why does this week always come up just when I’m experiencing a bit of writer’s block? Coincidence? Hmmm……
 
 
Third: I will be moderating the often imitated, never duplicated DSMA Twitter Chat beginning tonight at 9:00 EDT(US). You are welcome to join the talk, encouragement, support, and laughter that the fastest hour of the week is known for. Our topic this week:

Diabetes is NOT for the weak.

To join the conversation (or just lurk), follow the @DiabetesSocMed Twitter handle or the #DSMA hashtag. Join us!
 
 
Finally… I saw this on the train on my way into work this morning:
PowerToPreventDiabetes
Maryland’s Department of Health and Mental Hygiene has done an awful lot in my state to bring diabetes (and pre-diabetes) awareness to the masses. They have a pretty extensive website that has a “Take the Quiz” feature, and helps residents find resources to help them if they need it.
 
 
There you have it. Some important, engaging, and fun happenings in the diabetes world. Enjoy your Wednesday!
 
 
 

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

Choose something new? Or go with the existing standard?

May 4, 2015 – 9:57 am

I’m thinking it might be time… time to find a new piece of alert jewelry.

The only medical alert jewelry I've ever owned.

The only medical alert jewelry I’ve ever owned.

I am incredibly awed and fascinated by people who have diabetes ink on their bodies. Those people don’t have to worry about wearing a bracelet or a necklace that details the fact that they have diabetes. It’s right there on their arms (it’s on everybody’s arms, right?) for everyone to see. But… while I may admire someone else’s tatoo, the thought of getting one of my own just doesn’t appeal to me.

I’ve had the same Medic Alert necklace for all of the 24 years I’ve been living with diabetes. I updated it after I was diagnosed with high blood pressure, but it’s been the same model all this time. I got it originally because 1) I was told I must get a medical alert something because I had diabeeeteees; and 2) Because I didn’t want to be too flashy about advertising my diabetes to the world. Geez, and now I write a blog and engage in advocacy. How the world changes.

The thing is, I actually like my necklace. It has the basic information. It allows someone who finds me to make a collect call (why they don’t have an 800 number after all these years is beyond me) if they want to find out my endocrinologist’s name, etc. It has all of the most important medical information on it:

DIABETES
INSULIN DEPENDENT.
HYPERTENSION
ALLERGIC TO SULFA.

After wearing it 24/7/365 for so long (except while swimming and… sex), it really feels like another part of my body. It feels weird when I’m not wearing it. And I know of at least one instance when emergency medical technicians looked at it and made the call, getting valuable information that helped me.

But… I don’t like to stick with the same thing all the time. I’m thinking it might be nice to have something else I could wear now and then. But what? I’ve seen a lot of ads for different medical alert bracelets and such. Should I get something new? Even if it’s just so I could have an alternative? First world problems, yes?

I don’t know the answers to those questions yet. But I’m going to do a little research. I’m going to look into what’s available on the market, and decide if something new might be good for me.

I’m thinking it might do you some good to look into alternatives too. Unless you’re wearing something you really like already. If you are, please leave me a comment to let me know what it is so I can check it out. If you’re living with diabetes… and you don’t have something like this that you’re wearing already… even though it might seem strange and uncomfortable at first (because it was for me too)… get one now.

As strange as it may seem to be wearing an advertisement for your own diabetes, that advertisement may prove amazingly invaluable to you today, or tomorrow, or fifteen years down the road. If you want people to take your diabetes seriously, take it seriously yourself and get your own alert bling. Then leave me a comment below.
 
 
 

By StephenS | Posted in Diabetes | Tagged , | Comments (5)

Diabetes ain’t no sissy game.

May 1, 2015 – 12:56 pm

We’ve talked about this before…

Why is it that we are all so good at making life with diabetes look normal?

The reality is that life with diabetes is anything but. Diabetes is not for sissies.

– How many times have we worked hard, over a period of years, just to get our A1c down to a range that we and our endocrinologists can be happy with? How many times have we worked hard, over a period of years, to keep our A1c from growing higher?

– How many times have we voluntarily engaged in the tradeoff that includes using a sharp tool that causes us to bleed, just so we can help maintain our diabetes management?

– Pump users: How many infusion set changes have you completed over the course of living and pumping with diabetes?

– MDI users: How many injections have you had to endure over the course of living with diabetes?

– How many hypoglycemic moments has your diabetes included? Lows that knock us down… but often we get up and go on with our lives like nothing ever happened. And the people who we would most like to know, don’t have any idea at all what it’s like. Side note: I tell those people that I went through a near-death experience. Because I did. I want them to know how precarious the balance between high and low BGs really is.

– Show of hands: How many of us have had workouts that were cut short due to the fact that our bodies use insulin way better when exercising, and getting the basal/carb/exercise mix is difficult and ever-changing?

– Have you had an endocrinologist tell you that your A1c was high, and you’ve been trying so hard, and you just wonder if you should keep trying anymore? But you do, because, what’s the alternative?

– Did you get one of those unhappy A1c reports, or a high or low number on your meter, or a pump occlusion that causes you to do more than one set change in a day, or a low or high that just doesn’t seem to quit, but…

We forgive ourselves? That, my friends, is real bravery.

I haven’t even started on all the things that parents of kids with diabetes have to go through, much of which is even more out of control than what I go through.

There are many things that diabetes puts us through, on a daily, weekly, monthly, quarterly, year-by-year basis. Sometimes we can feel like a failure. Like we’re weak. Like we’re not as good as someone else. But nothing could be farther from the truth.

It’s easy to forget the fact that we’ve endured a lot, and come through it despite the tough moments (or weeks, or years) that come with living with a disease that is with us all the time, and is so volatile.

Fact: Diabetes ain’t no sissy game. If you’re living with diabetes, and you’re alive, you are a champion.

Have anything else you’d like to add? Feel free to tell me how you’ve endured through the months or years by leaving a comment below.
 
 
 

By StephenS | Posted in Additional Inspiration | Tagged , , , , | Comments (0)