Category Archives: Additional Inspiration

What makes us different?

February 7, 2015 – 3:25 pm

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Okay, we know what makes us different.

You know what else makes us different?

We Care.

I mean, we care in a very big way. Would you like an example?

image

I was cleaning up some old photo files the other day when I came across this one from last year’s MasterLab in Orlando, Florida. It really made me notice something I hadn’t seen before. This was during the joint presentation given by Kelly Close and Adam Brown of diaTribe. First, let me ask you… What do you notice from this photo?

What I notice, other than the marvelous people appearing in it, is how everyone’s attention is either on the slide being presented or on the speaker presenting the slide. This was not in the early hours of the one day advocacy event sponsored by Diabetes Hands Foundation. This was about mid-afternoon, after we had already heard a few inspiring speakers, and after a nice lunch that, under other circumstances, might have made us very sleepy by then.

Yet we were still engaged, still interested in learning how to advocate effectively, how to be better at helping others living with diabetes while pushing the right buttons to amplify our voices.

That photo says to me that the people in that room (50-75 maybe?) were all in.

I’ve seen and heard a lot (including on that day) from people who have said that diabetes doesn’t have a movement yet. How we’ve not been bold enough. How, compared to advocates for better treatment of other diseases, we’re just not doing enough, or we’re not speaking with one voice, or we’re not something.

My opinion: We’re doing just fine. And I care a lot more about the future than I do about the past. Yes, it’s very true that diabetes doesn’t get enough attention from congress, and Big Pharma has us all caught up in that “Can’t live with the price, Can’t live without the medicine” paradigm. I freely admit that we could stand to have a brighter light shown on our disease. More people need to learn more about what we have to live with every day.

But we’re still making progress. We’re able to speak on bigger platforms and with bigger voices now, including crashing an FDA web conference, and being written up in the New York Daily News. Bigger audiences and more influential people are hearing our message.

And let’s not forget that all of us living with diabetes is living with an extremely unique condition. We have a disease that, if everything goes right, allows us to live an otherwise normal-looking life. For many of us, the complications that come with our condition like fries come with a Big Mac don’t show themselves until much later. In some cases, that means additional misguided judging by people who just can’t comprehend how doing a great job managing diabetes doesn’t always keep us safe from problems later. Or now.

When someone is diagnosed with cancer, or ALS, for example, the symptoms show themselves in a very visible way. When someone goes through chemotherapy, or starts to lose their muscle tone due to ALS, it’s very natural to want to help them as much as possible. We see the outward evidence of need. It is right that we do this.

When someone with diabetes goes through a difficult hypoglycemic episode, you know what we do? We treat and then we keep on going. Maybe it’s the idea of the word “normal”. We always want to be normal… when we’re high we want to be normal, when we’re low we want to be normal. When we’re normal? Not one living soul notices us.

So to get back to the photo, here’s the point: The people in that picture understand how absolutely sinister this condition can be. Whether we see the outward signs or not. Whether we see the outward signs now or later. They get it. What’s more, they care. And they are all doing something about it. Do you hear me? We are all doing what we can to make our voices heard.

We are all doing what we can. We have all made improvements and strengthened our advocacy, especially over the last few years. Our advocacy efforts and our fundraising efforts are sometimes dwarfed by those linked with other diseases. But we are not dormant. We are building. Things are happening. We are challenging decision-makers and we are saving lives. And it’s my opinion that most, if not all, of what we have achieved to this point has been due to the tireless efforts of people who, in addition to having diabetes in their lives every day, find time to raise children and work a regular job too.

After 24 years, I know where we’ve been. I know where we are now. What makes us different? Diabetes is as old as the ages. Large scale diabetes advocacy is just getting started. We have a lot to learn.

We have a lot to be proud of too.
 
 
 

By StephenS | Tagged , | Comments (5)

Friday pep talk.

February 6, 2015 – 5:32 am

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As we all know, diabetes is a strange beast. Sometimes our BGs play nice, staying within range, and those of us who practice pre-bolusing actually remember to do so all day. Other times, we’re subject to wild swings, lows that just won’t come up, or highs that can’t be brought down no matter how much insulin we throw at them.

Likewise, we’re stuck with the constant requirements of managing (to the best of our ability) a condition that never plays fair. People not living with diabetes don’t always understand that this disease is not as simple as do a calculation, take a certain amount of insulin, eat perfectly, and our numbers will be awesome all the time. And there’s that little tiny voice in the back of our minds that we try to keep silent, warning us of possible complications. On top of that, let’s face it: We’re human. We’re bound to make a mistake or two (or three). Yuck.

Okay, so we know that things aren’t always perky, right? What do we do about it?

Far be it from me to give advice (famous last words). First, let me give an appreciative nod to this amazing post by Briley at inDependence. In addition, I’m hoping a few reminders here will help you in a moment of diabetes stress. Think of it as a Friday diabetes pep talk.

Yesterday may suck, but it’s yesterday.
That’s the best part of awful numbers, stupid people who think cinnamon will cure you, and CGMs that go kaput in the middle of the night. It’s over. I’m not saying forget about it… that’s impossible. What I am saying is be glad that the moment is over and you survived it. Whether you think you are now or not, you are stronger for it, and the future is unwritten. Carpe Diem, baby.

You count. Diabetes doesn’t.
This is one of those sayings where, sometimes, you have to keep repeating it to yourself over and over again before it sinks in. But like I said, if you’re surviving, it also means you’re living to see another day. For some people, and for some circumstances, that’s not just something… that’s everything. Particularly in America, it’s easy to hide what’s going on. We don’t like to show weakness. We like to pick ourselves up, dust ourselves off, move on. That can be good (see above). The reality, however, is that occasionally it’s good to stop, take a moment or two to compose ourselves (even if it takes all afternoon), and then move on. Doctors are learning more and more that our mental well-being is just as important as our physical well-being. Let’s prove to ourselves that we’ve received that message. Let’s remember that how we feel about things does matter. A lot.

We have more resources than ever before.
In the past month, we’ve seen advances in diabetes technology that many couldn’t see coming a year ago. Meanwhile, there are more diabetes organizations, conferences, and informal get-togethers where peers (you and me living with diabetes) can meet and commiserate. On top of that, there are more diabetes blogs where people like us are sharing our stories, and what was once a fun, quirky Twitter chat has now become a Wednesday night institution. Heck, in just the past week I’ve seen a number people get late night diabetes help and support via Twitter, myself included.

Diabetes takes a lot away from us. It also gifts us with perseverance and empathy. Perseverance to endure the tough times and continue on where non-pancreatically-challenged individuals might indeed falter. And empathy that allows us to recognize when someone needs help and then do something to lift them up. I almost never encounter others with these qualities. Yet they are almost universal in our world.

So why not use our unique qualities to make a great life for ourselves and our diabetes friends going forward? YouCanDoThis. Bring on the day.
 
 
 

By StephenS | Tagged , , , | Comments (4)

We need to take care of ourselves.

January 14, 2015 – 9:37 am

Wow, what a difficult morning… or was it?

Yesterday, I got out of bed a little late (maybe 15 minutes), and like most mornings, I had a list of things to do before I left for work. Shower, shave, get my clothes on, go downstairs, let the dog out, feed the dog and cat, start the coffee (always high on the list), make my own breakfast, pack my lunch, and…

Take my medicine. I mean that both literally and figuratively.

Fifteen minutes doesn’t seem like a lot, but it is a lot when I also have to look after my diabetes. I forgot to do a BG check before I made breakfast (I am definitely a pre-boluser), and that frustrated me. So I stopped what I was doing, washed my hands like a good little boy, and performed the finger stick. I’m home free, right? Wrong.

I forgot to take my oral meds. This includes a multivitamin and a baby aspirin every day. That’s another thing I have to stop for.

Then, when I was within five minutes of leaving, I realized: I needed an infusion set change. There wasn’t enough insulin left in my reservoir to last through the workday; so once again, I had to stop what I was doing to focus on, you know, doing stuff that will help keep me alive. I arrived at work just in time, and started a full schedule of meetings and testing.

This kind of morning really bothers me. Until I’m actually out the door. Then I’m all business, not thinking about the things I have to do for my health and how much time they take out of my life. I mean, I get it: I’m extremely fortunate to be able to buy drugs and vitamins, and have an insulin pump to help me manage my diabetes. I don’t like the extra time that managing and worrying about my diabetes takes. But I also tend to sweep it under the rug a lot. My Midwestern upbringing taught me to not complain about things I can’t change; just deal with them and move on.

And I can usually handle that, until I’m confronted with it in a way that makes me stress over the time these things require, in a very tangible way. Then everything is different, and the relentless nature of diabetes is manifested in ways that can make me very unpleasant to live with for a while.

In the end though, what can I do? I just did what I had to do… I took care of myself. It’s easy for us to forget that, isn’t it? We need to take care of ourselves. Regardless of the time it takes. We are worth that effort. Our health and well-being come first. And though it might make a few of my colleagues uncomfortable to read this, work will still be there if I’m five minutes late.

Despite the time it required, once everything was finished, I was ready for the rest of my day. Diabetes frustrated me yesterday, but I was still able to tame it by taking the time needed to take care of me.
 
 
 

By StephenS | Tagged , , | Comments (4)

Perspective.

October 9, 2014 – 10:02 am

As I sit here watching the sunrise begin another glorious day on the beach, I’m filled with… well, a sense of relaxation, really, and an inherent question about why I’m out of bed this early on my vacation.

But stay with me– there’s a point, and it has to do with…

Perspective.

I’m quite fortunate to have this one week during the year, away from work and other distractions. I know many others who never take more than two or three days off at a time during their entire working lives, unless they wind up in the hospital. In other countries, heck, in our country, sometimes people have to work seven days a week for years at a time just to get by.

I also have this insulin pump that I use (which is giving me fits right now, but stay with me), that helps me manage my diabetes easier. Some people don’t have the luxury of having a choice between pumping or multiple daily injections. It’s just the injections, IF they’re lucky enough to get coverage that will pay for part of it, and IF they can afford the astronomical costs of the things that aren’t covered.

I have access to insulin, the wonder drug which will keep me from dying from the effects of Type 1 diabetes. Many in other countries do not have such access, and lack of access to this simple potion, that’s been in existence for nearly 100 years, threatens their very existence.

I have access to this fabulous Diabetes Online Community, where a wealth of support and encouragement awaits with the simple click of a button. Yet many are left wanting for understanding and education because they are unaware or unable to discover this life-affirming element to their diabetes circle of influence.

I’ll be honest… I’ve made the most of the opportunities I’ve been blessed with. But a lot of those blessings came as a result of where I was born, and the environment into which I was born.

I’m not sure if I have a big focus for Diabetes Awareness Month (which begins November 1, by the way). But I know I would like to do something to help people who, through no fault of their own, have little to no options when it comes to diabetes care. That includes people in my own country, the USA.

It’s easy to sit and complain about things that are wrong in the world. But I never want to forget about the children, the parents, the brothers, and the sisters living with diabetes who need our help. You can find them all over. And you can help them.

If you keep your perspective.
 
 
The Big Blue Test begins October 15. For every test taken, Diabetes Hands Foundation will make a $1.00 donation to a worthy diabetes effort. For more information, go to bigbluetest.org.
 
 
 

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8 Wishes.

October 1, 2014 – 9:28 am

On Monday, I talked a little about the first nine months of the year, and how it has gone for me, and what I hope to accomplish before the new year arrives once again (not counting the Jewish New Year, which just recently began— L’Shanah Tovah to you).

Today I’d just like to give my thoughts on the rest of the Diabetes Community, and my hopes for all of you during October, November, and December:

– I wish for safe deliveries for the expecting D-blogger moms out there who have worked amazingly hard to get where they are, and are bravely telling their stories… I think there are four who are all expecting very soon: Jen, Elizabeth, Jessi, and Kelley.

– I wish for clear answers for people who are searching for them, whether they’re worried about something physical, mental, diabetes- or non-diabetes related, monetary, or spiritual.

– I wish for great weather and fantastic rides throughout the fall to all of my favorite D-blogger bike riders, including but not limited to: Jeff, Victoria, Moira, and now Alecia.

– I wish for continued success in clinical trials while teams fine-tune their artificial/bionic pancreas systems, bringing us closer to the hips (and tummies, and backs, and, you get it) of those who so desperately need it. Like, now.

– Speaking of continued success, I wish for the continued success of efforts like CGM In The Cloud, bringing remote CGM monitoring to the masses for the first time. Thousands of new users, in just a few months.

– For D-students, I wish an awesome school year filled with learning, music, art, and sports. Plus, a friend to share them all with, who will support and encourage them no matter what.

– I wish for people who are unhappy with the Diabetes Online Community to shake off their disappointment and recognize that every Person With Diabetes, and those deeply involved with People With Diabetes, popular or not, are just as deserving as they are. There are no degrees of deserving, and if I don’t get invited to something, it doesn’t mean that the people who are there are to blame. I understand your disappointment… I do. I also recognize that your voice matters. Don’t stop shouting. If you’re still an active member of the DOC, don’t stop shouting. Just not at each other, m’kay? We’ve got plenty of other dragons to slay.

– Most of all, I wish for your happiness through the rest of the year. I wish for lots of special experiences filled with pumpkins, turkey, Christmas trees and dreidels, all filled with laughter and joy and not a hint of diabetes creep.
Most of all, please remember that I support you… no conditions.
 
 
What are your wishes for the rest of the year?
 
 
 

By StephenS | Tagged , , | Comments (3)