Tag Archives: type 1

Encountered by Diabetes In The Wild.

I love to read stories from friends who encounter others living with diabetes in the course of their everyday lives. Those Diabetes In The Wild stories are always interesting.

But I almost never, ever encounter diabetes in the wild myself. The times when I have encountered someone else living with diabetes have indeed been few and far between. But twice in the span of just one week, I’ve actually been the subject of someone else’s Diabetes In The Wild stories.

The first time was at my post-op visit with the surgeon who removed my appendix. At the office, I went back to get weighed and get vital signs with an assistant, who almost immediately asked “Is that an Animas Vibe insulin pump clipped to your pocket?”. I was astonished that she knew, until she mentioned that both she and her husband have been pump users in the past (her husband still is, but she is now MDI).

We talked briefly about the Medtronic 670g, and about the Abbott Libre, which will hopefully be approved by the U.S. FDA soon. I mentioned my participation in clinical trials.

The second encounter was from a technician at our Veterinarian’s office last Thursday. We were in to get Boomer a booster on one of his vaccinations. She saw the ONE—–>NONE T-shirt I was wearing, and blurted out, “I just have to ask– One to None— is that about Type 1 diabetes?”. Thanks Alecia, for the one piece of clothing that may be, above any other, a diabetes conversation starter.

The vet tech’s son is nine years old, and has been living with Type 1 for a few years. She couldn’t imagine what it will take for her son to live with diabetes for 26 years like I have. You know how you survive 26 years? One day at a time. Her son has the Vibe pump, and the Dexcom G4. She raved about Dexcom and their customer support, as did I. Later, we got her e-mail address and I sent her information about the upcoming Friends for Life Falls Church event. You can never have too many diabetes friends.

The connecting theme from these two encounters is easy to understand: there are, in fact, tens of millions of us living with diabetes in this country. Yet living with diabetes can be a lonely existence. Tens of millions of us living with diabetes, hundreds of millions of us who are clueless about what it takes to live every day with this disease.

That’s what makes that moment of recognition, that instant bond, so special. It’s not necessary for us to have friends living with diabetes, or have people in our lives who understand. But when we do, it makes all of the 3:00 a.m. glucose checks, the bad pump sites, the constant doctor visits, and the fights with insurance companies easier pills to swallow, to borrow a metaphor.

I may still have diabetes… but I have new friends who understand me, and new friends who can count on me to understand. Me too? Priceless.

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How to react? How not to react?

For the benefit of anyone reading this months down the road:

CrossFit, the fitness company, posted a tweet that was particularly offensive to People With Diabetes. It was wrong, both in its tone and its wording, and because its statement had absolutely nothing to do with actual, you know, facts.

After this tweet went out, members of the diabetes community did their best to show their outrage at such a gutless attempt to guilt people into working out using their program, and shame People With Diabetes. Which brought out more ridiculous responses from the CrossFit CEO. Stupid is as stupid does, I guess.

The biggest diabetes organizations in this country got involved too, posting their own social media messages in response. For the most part, I was happy to see this. It’s good to know that when someone tries to hurt you via social media, JDRF, ADA, and others have your back.

But… and you knew there would be a but… some of the reactions were less than stellar from an inclusiveness point of view.

Is that too vague? I’m not sure I know how to put it into words. I think what I’m saying is, when I see a popular singing star, who lives with diabetes, tweet “Know the difference between types of diabetes”, I wonder what in the hell the different types of diabetes have to do with this issue in the first place. I’ve gotta admit… when I saw that one, I cringed a little bit. Why?

Because when we point out that my type of diabetes isn’t to blame for [fill in the blank], or we say this type of diabetes isn’t caused by [fill in the blank], we’re also implying that some other type of diabetes is to blame, or some other type of diabetes is caused by something that our type isn’t. Don’t believe me? Ask a Type 2 how they felt about some of the most vocal responses to the CrossFit issue.

And if you say, “Hey, well, that’s not what I meant”, I will tell you that it is not what you say, but rather how what you say is perceived that is important. Just ask my wife. And, Type 1s, when we make Type 2s feel this way, we are alienating 25 million People With Diabetes just in this country. 25 Million potential allies in the fight for better care, better access to medication, better acceptance by society. And, Type 2s, if you ever alienate Type 1s, you are alienating one of the most resourceful and vocal groups of diabetes advocates on the planet.

To varying degrees, we are all getting screwed in the media. To varying degrees, we are all getting more attention in the media. I don’t have the exact textbook way to respond to situations like these.

I just know that, like I’ve said before, it’s not always important to get there first with the most anger. It is extremely important that we respond to shaming and stigma-inducing ridiculousness by starting with what is in our heart… considering everyone affected by (and potentially viewing) the initial issue, and potential responses… and holding up a light to our shared humanity, and giving a voice to that shared humanity, in a way that protects us all, lifts our common cause to the highest plain, and encourages thoughtful discussion and meaningful change for the better.

I think that’s the longest sentence I’ve ever written.

There will be more discussion on this topic, coming on the next episode of Diabetes By The Numbers, here in a few days. As always, your opinion matters here too.
 
 
 

October DSMA Blog Carnival: What’s easy about living with your type?

The October DSMA Blog Carnival topic is easy to answer, but as you can probably guess, the premise of the question goes a lot deeper:
 
 
Type 1, Type 2, LADA, Gestational, diabetes brought on by surgery . . . . the list of types of diabetes goes on. Each type may have differences, but ultimately they are all diabetes. When we think about it, there is a whole lot that all types have in common. However, that doesn’t mean we can’t give credit for some differences too. So let’s look back to our “Breaking down the barriers between types” chat on September 10th and discuss . . . . .

Anything easy about living with your type of diabetes that isn’t easy for another type?
 
 
I remember this question (I moderated this chat, and I still have my notes). The idea behind asking the question was that I wanted to ask people to acknowledge that there may be something that helps them manage their diabetes, that maybe another Person With Diabetes doesn’t have at their disposal.

The easy answer for this Type 1 is that I can take insulin for anything I may eat, at any time of day. That flexibility is something the vast majority of Type 2s, especially, do not have. I’m not going to get into whether Type 1 is easier than Type 2, or easier than any other type of diabetes. The fact is, all diabetes requires a lot of work. But if I acknowledge that some part of diabetes may be slightly easier for my type, I’m recognizing that that’s a part of diabetes that is more difficult for another type. In making this admission, I’m saying to my fellow Type 2s, LADAs, Gestationals, etc… I wish you had it as easy as me.

As I recall, there were one or two Type 2s who mentioned how taking insulin was something that seemed more difficult to them compared to how they manage their day-to-day life with diabetes. Isn’t it interesting how we can think about the same things in different ways?

I also remember asking this question from an educational perspective. I’m intensely curious about nearly everything, and I wanted to see how other people viewed their diabetes versus another type. I wondered how they might consider having to manage their diabetes a different way. Most of the Type 1s participating in the chat that evening answered the same as I did. I found it fascinating that people considered insulin an easy thing for them, even though it meant taking injections or having an insulin pump attached to them 24 hours per day. It’s all in how you look at it, I guess.

In the final analysis, when the word “diabetes” is part of your diagnosis, it doesn’t matter what word (or words) preclude it. You’re dealing with something serious and challenging on a daily basis. The best part was the outpouring of support and understanding for all types during the chat that night. It goes without saying, but I’ll say it anyway: A diabetes diagnosis automatically makes you eligible for as much encouragement and support as the Diabetes Community can muster. As a community, we are stronger and capable of much more when we welcome and support all people, of all types, living with diabetes.
 
 
This post is my October entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetescaf.org/2014/10/october-dsma-blog-carnival-4
 
 
 

Let the bloodletting begin.

No, this isn’t about a bad experience removing an infusion set (fooled you, didn’t I?).

From the I Must Be The Only One Who Didn’t Know This Department comes this news flash:

I have Type 1 Diabetes, and I can give blood.

RedCross

When the word went out recently about a blood drive at my place of employment today, I had the same reaction I usually have. I thought, too bad I can’t donate. Prior to my diagnosis, I used to do that all the time. Like, at least twice per year.

This time though, I wanted to find out exactly why. Admittedly, I thought there might be a blog post in it, so there is some selfishness going on here. Anyway, I went to the American Red Cross blood donation site to see if they had any information on it. Then I was going to try to find another source to see if I could determine whether the information from the American Red Cross was actually true.

There’s not a lot of information on the Red Cross site, but two things jumped out at me. First, the big surprise:

“Diabetics who are well controlled on insulin or oral medications are eligible to donate.”

I was ecstatic to find out that I could actually donate blood. As I stated above, I’m probably the only one who wasn’t aware of it, but I was under the impression all these years that a bad pancreas meant bad blood, and I couldn’t give. My father’s life was saved after an auto accident over forty years ago thanks to some great doctors and blood donations, so I want to pay it forward. Plus, even though it may sound weird to some, I consider it kind of a civic duty to give.

Second, something just a little scary:

”Donors with diabetes who since 1980, ever used bovine (beef) insulin made from cattle from the United Kingdom are not eligible to donate. This requirement is related to concerns about variant CJD, or ‘mad cow’ disease.”

This is not a concern for me, thank goodness. So for now at least, I can still donate.

Don’t be too excited for me yet… I still have to go through the initial in-person screening questions and blood pressure, temperature, etc. tests before they’ll actually put the needle in. But I’m feeling pretty good about my chances right now.

To find out more about giving blood here in the USA, the process, and more, check out the American Red Cross blood donation website at www.redcrossblood.org

What about you? T1D or not, have you given blood? What was it like? Were you ever told you couldn’t give blood? If so, were you told why?

I’ll let you know more about my experience tomorrow…
 
 
 

It’s a big world.

As usual, this week’s DSMA chat (9:00 EDT in the USA) got me thinking. Not because of the topic (Advocacy), though it was great and there was lively conversation.

No, what’s really got me thinking is the comments by Beatriz Dominguez. Bea blogs at Cranky Pancreas. In addition, she’s on the DSMA advisory board. Not enough for you? She also hosts DSMA Live en Espanol. She’s also a Type 2 diabetic, and she’s not shy about letting people know when she thinks that Type 2s are not being taken seriously. I like that. And, I have to admit, it made me a little uncomfortable. Take a moment to look at her comments in the transcript (look for @CrankyPancreas). I’ll wait.

Hey, I know how real Type 2 is. My grandfather wound up with Type 2 toward the end of his life. I know that it greatly impacted his final days, though I didn’t understand how much until later (he died 5 years before I was diagnosed with Type 1).

But, if I’m going to be honest, I have to admit to… maybe not taking Type 2 seriously for a long time. Not like I bought into all of the misconceptions out there about Type 2s. More like, I thought I was a lot tougher because I endured with Type 1. Like I had the harder type. What does that do? It adds an unnecessary level of, I don’t know… Elitism? Non-inclusion? Stupidity? Yeah, all of that and more. Hard to admit it, but when I thought about Type 2, that’s what I thought.

Thankfully, I’ve long given up that kind of thinking. But Bea’s comments Wednesday made me think about it again.

So even though you know this, let me say it again: Diabetes sucks, no matter what flavor it is. And every PWD deserves our respect, our support, and our empathy.

It’s a big world, kids. Let’s make some room at the table for everyone.
 
 
 

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