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Posts from the ‘Diabetes Advocacy’ Category

Lucky.

Low blood sugars have become moments that scare me more now than they did when I was younger, mostly because the symptoms of my lows have all but disappeared until I’m deep into the 40’s. It’s shocking to my system to have that gentle lag and foggy confusion suddenly open into the abyss of a properly symptomatic low, bringing about the sweat and shaking, confusion and disorientation.

But lately, I’ve been thinking about how lucky I am to have the ability to go low. Hear me out on this … it makes sense in the long run.

During the course of any given day, I’m able to deliver a basal rate of insulin that keeps my blood sugars under control, and I can take a bolus of insulin to cover any meals I’m eating. I have the option to correct a blood sugar of 140 mg/dL back down to 100 mg/dL with precision dosing from an insulin pump, insulin pen, or even a syringe. I can micro-manage my blood sugars throughout the day in efforts to achieve an A1C and time-in-range that gives me the best chance of good health for a long time.

It’s not a question of “will I or won’t I get insulin today?” My biggest worry is how in-range my numbers have been. Diabetes, no matter where you live, is not a pleasant disease, but in a country where my access to insulin is not a panic point, I realize how lucky I am.

And I know what I can do to help those who aren’t as lucky.

Yes, more of this Spare a Rose stuff.  But you guys. It takes just a minute to make a donation to Spare a Rose, benefiting Life for a Child. Hang on … I just did it.

I made good on my promise to donate a rose for yesterday’s Super Bowl game (during which I paid little attention to the game itself and was a bit more confused by how many babies truly are credited back to Super Bowl shaggings). A five dollar donation is one full month of life for a child with diabetes in a developing country.

Can you spare one rose today?

 

It’s All About That Rose, That Rose … So Spare It.

Today, people will be watching a football game and cheering on their favorite team (and my mother will be in a sports fan version of mourning because the Patriots are not playing).  I want to remind you that it’s all fun and Big Games until someone loses an islet.

(Yes, another diabetes post.  On a diabetes blog!  Go figure.)

Even though the Superbowl is today, my eye is still on the Spare a Rose prize.  Please throw some support towards the Spare a Rose campaign.  With this one, we can all win big.

For a little extra fun, join the discussion on Facebook about Team Game or Team Commercials, pick a team, and donate an extra rose if your team “wins.”  Or loses.  Either way, it will be a nice change to pace to watch a pile of people battling on Facebook about something other than politics.

A Fonder Heart.

Spending a few weeks offline was nice.  Good for me.  Removed that panic from, “What can I write today?” and replaced it with, “What can I do today?”  Stepping away from my website for the bulk of December was in efforts to shake the dust off my advocacy and outreach efforts by allowing a little room to not advocate or reach out.

Funny how that works, that absence thing doing weird things to the fondless levels of my heart.

When last Wednesday rolled around, I was excited to join the #dsma chat.  Emails are being answered with renewed excitement because I had a couple weeks to disconnect from things, making me appreciate the * ding * of email a little more.  Diabetes doesn’t feel like the narrator anymore; I’ve taken that role back for myself.

And doing non-diabetes things was good.  Traveling a bit with family and friends distracted from the constant hum of pancreatic chaos.  Christmas and New Year’s included hosting a lot of people in and out of our home, filling the space with voices and laughter and pleasant mess.  We made busted-up looking gingerbread cookies that ended up looking more like Super Mario Sunshine stars, but there’s joy found in Mario so yes.

I did a lot of laundry.  Yes, super boring, but superior therapy for me.  Things go into the machine horrible and come tumbling out of the dryer smelling fantastic and all fluffy-clean.  You can have your resolutions for 2016; I just want a pile of clean laundry to snuggle with.

I found one of those big, tupperware packing containers downstairs and it was filled with unused yarn.  The squeal I let out upon discovering this treasure was embarrassing, but I’d do it again because I frigging love yarn.  Currently dreaming up projects, while Birdy steals snippets from skeins to make wigs for her dinosaurs.

I watched my kid go bananas in a New Hampshire snowfall.  “MOM!!” and then EXCITEMENT.  After a winter where shorts have been more necessary than snowsuits so far, it was a beautiful thing, watching her scoop up handfuls of snow and lob them in her five year old rendition of a snowball.  The snow was beautiful.  (Remind me in February that I said that.)

… does this stuff sound boring?  MAYBE IT WAS but at the same time, boring felt nice.  Mellowing out is not my strong point, and neither is sitting still, but a concerted effort to not mentally and physically fidget myself into oblivion was such a stark change of pace that I liked it.

But now the holidays are over and it’s time to ramp things up again, keeping the pleasant mellowing on-call when necessary.  School is back in session and work is edging towards full swing here at home.

But the break was good.  Necessary.  And now my brain feels ready to do its job.

… can’t say the same for my pancreas, but that little bastard is a work in progress.

#Insulin4All: A Chat with Elizabeth Rowley.

Last week at the International Diabetes Federation’s World Congress in Vancouver, I had a chance to briefly reconnect with Elizabeth Rowley from T1D International.  We talked about the #Insulin4All campaign and the work she and her team are doing to help provide access to people with diabetes around the globe, and how our online community can work together to improve lives across the globe.  Today, she’s sharing some of her thoughts on how we can change the world for PWD.

Thanks for taking the time to talk today, Elizabeth!  I see that the #Insulin4All was popular on World Diabetes Day again this year.  Can you tell me more about that campaign? 

The #insulin4all campaign was started last year by a network of organisations called the Access Alliance that are passionate about access to insulin, diabetes supplies, care, and education for all people with type 1 diabetes.

World Diabetes Day (WDD) started in 1991 in order to “draw attention to issues of paramount importance to the diabetes world” and has since become a huge day in the diabetes community for raising awareness about diabetes. The Access Alliance felt that while WDD is a wonderful thing, the true spirit of the day had been somewhat lost because people around the entire globe with diabetes were often forgotten. We wanted to do something more. So many people living with type 1 diabetes struggle to survive because they cannot afford or access their life-saving insulin, blood glucose strips, or basic healthcare. Others are caught in conflict where there is little humanitarian assistance for people with diabetes.

The aim of the campaign is to unite as a diabetes and global community to show governments, companies, and individuals that we recognize the problems mentioned above. It’s important that we stand together to work towards tangible solutions. The campaign gets bigger each year around World Diabetes Day, but we want everyone to support #insulin4all every day of the year.

How can people participate?

The easiest way to support the campaign is by using the hashtag on social media and spreading the world about the issues. There is a lot of content on the Tumblr page and on the T1International website that you can share to promote and push for #insulin4all. You can also still submit an #insulin4all image on the Tumblr page. All you need to do is take a picture of yourself holding up a piece of paper with #insulin4all written on it, submit it to the campaign page, and share it widely.

How does this campaign bring the mission of insulin for all to a higher level and what is your goal?

The diabetes community is a hugely powerful force and we have seen it unite to push for change from topics such as general diabetes awareness to access to CGMs. Many people with diabetes don’t realise that millions are dying premature death because they can’t access the basics that everyone living with the condition needs to survive. We want people to know that this is happening and we want to unite to change the situation. As with any change, the first step is to understand the problems to find the best solutions. The next step is building a force of advocates to ensure that change happens. That is what this campaign has already begun doing and will continue to do until everyone can live a full life with diabetes.

What makes this campaign different from other insulin access efforts, like the 100 Campaign?

The #insulin4all campaign is somewhat unique in that last year, for example, it had participation from people in over 40 countries around the world. It is very important to share the voices of others, especially those who are facing lack of access to insulin and supplies, and we are so glad to be able to do that through this campaign.

We support the 100 Campaign and love its clear and powerful idea of 100% access to insulin by 2022. Despite the hashtag, #insulin4all’s focus is not only on insulin, but on all of the ‘pieces of the diabetes puzzle’. Even if you have insulin, for example, if you don’t have a syringe to inject it with, or a means to know your blood sugar levels, you’re still in grave danger. We feel strongly that all of these things need to be taken into account when building solutions.

Finally, while we know the #insulin4all campaign is a powerful awareness and advocacy tool, we also know that it alone will not create sustainable change. The annual campaign is part of a wider organisation and movement that is working towards that change. T1International and the other Access Alliance members are taking on a truly collective and collaborative approach because we recognize that we are stronger when we work together. The members of the alliance all work with and are part of diabetes communities around the globe which helps us ensure that we fully understand the many complex issues faced by people with diabetes. *If you want to join the Access Alliance, get in touch with elizabeth@t1international.com*

Do you think the diabetes online community has global reach and can make a truly global difference?

Part of the issue we are bringing to light is that the diabetes online community is probably not global enough. This was certainly one of the motivations we had in setting up the campaign and the Access Alliance in the first place. We have been heartened to find that, as people learn about these issues, many are shocked and stunned – and they want to do something about it. We are confident that #insulin4all will grow the number of people that know about the issues and will therefore grow our power in numbers to speak out against the injustices.

Yes, change is possible, but there are no easy answers or quick fixes when it comes to ensuring everyone around the world can obtain insulin, syringes, test trips, glucometers, and the diabetes education needed to keep them alive. That makes it even more important that we determinedly search for those answers and find appropriate solutions. It’s an ongoing process but it’s a vital one if we are to see the kind of change that is needed for our brothers and sisters with diabetes around the globe.

Is there anything else you’d like to add?

“Life with diabetes is complicated. Access to vital insulin, diabetes supplies and medical care should not be.” If you agree, support #insulin4all today or get in touch with elizabeth@t1international.com if you want to get further involved.

Guest Post: E-Patient Dave Takes on T2D.

Dave deBronkart and I met several years ago through patient advocacy and online connection points, and I’ve followed his health story as he has simultaneously followed mine.  Dave comes from the perspective of a cancer survivor who almost died and has turned his “free replay in life” into a crusade to open healthcare’s minds to the idea of partnering with patients.  So when he messaged me to tell me that his lab results for A1C came back a little elevated, I watched our health stories smash up for the first time.  Nothing like the experience of trying to change an A1C to bring people together.

Today, Dave is guest posting about his experiences toeing line of type 2 diabetes, and his take on patient guidance in the diabetes space.  (And for more from Dave, you can follow his very lively Twitter account or blogOr just Google him and see all the fun that pops up.)

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Dealing with an “increased risk” of T2D
by ePatient Dave

A1c Nov 2014

A year ago this week I got some blood work done and it came back with this great big numeric fart in my face: the number 5.8, followed by “Increased risk for diabetes.”

WHAT?? I. Am. Not. A. Diabetes. Person. Those people are Kerri, or Amy, or Dana, or Manny, or Scott, or Eric, or Dominick. It’s all those people I like and respect and enjoy knowing, but it’s not me. I mean, they’re not me. I’m not them – they’re a special class. What?  I mean, I’m a kidney cancer guy, not an insulin problem guy. I don’t even know what that is, really. And I certainly don’t know how to do it.

In hindsight it feels like it was easier when I was diagnosed in 2007 as almost dead with kidney cancer. And that episode was over in less than a year. Me with a permanent thing? (I know I’m sounding like an uninformed idiot here. That’s what it’s like when you’re in the denial phase.)

What to do? Back then I got it in gear, doing what I could despite bad odds, and I was one of the lucky ones, aided by a great online patient community, which my oncologist said (in the BMJ!) he thinks helped save my life.

So, what to do this time? My PCP told me about a diabetes prevention program run by the YMCA that reduces by 58% the odds of ever developing T2D, if you lose x% of your weight and get 150 minutes of activity every week. I’d have to pay for it – a few hundred bucks – but it seems worth it.

Withings weight curve 2015-08-30And boy has it been effective for me – check the graph from our wifi bathroom scale. (My results were not typical!) I lost 30 pounds in four months (January to May), dropped a few more to 197 in August… I’m back up over 200 now but I’m also a gotta be active guy … first time in my life I’ve felt I have to get outside and move around.

It’s really a lifestyle program – they teach what I’d call food awareness, but it’s really not a diet. They have you count fat grams, with a book or an app or whatever, but that’s no diet. Then later they get into some more detail. But it’s not complicated. And they have you get active – no particular exercise regimen, no in-your-face smiling Sweat Coach.

You know what, though? Effing stupid insurance won’t pay for it.  If the insurance industry wanted to reduce medical spending they’d obviously spend a few hundred on prevention, so I conclude that they’re either stupid or corrupt. (I know I don’t usually talk this way but I honestly can’t figure out any either explanation. Can you?)

Plus, the effing stupid program isn’t available to people who aren’t yet officially pre-diabetes! It’s a good program, and my wife wants to do it too, but they won’t let her in because she’s not almost in trouble! What the !@#@! are these people thinking, not even letting someone buy their way into this course?

And you know what else?  When I measured my A1c again in September, it was up … it was worse. 5.9.

So now I’m in the middle of trying to educate myself about that.  Do you have any idea how hard it is to find out what to do about that??

Well, I imagine you do know. I’m here to say, for sure, that although T2D is different from T1D, it’s clear to me that the system (whatever that is) sure doesn’t make it easy for us to do the right thing.

I do know this: digital tools made (and continue to make) my own work on this a lot more practical … I mean, without important information and without feedback tools, how is anyone supposed to do a good job? As I always say in my speeches – “We perform better when we’re informed better.”

Here’s to a radical acceleration of the tools we need – driven by what patients say they – we – need!

And I’m not even T2D yet – I’m just frickin annoyed at how I can’t even get clear instructions on what I should be doing about it! I believe health goals should be patient-driven, and the C word (“compliance”) should be thought of as achievement. So why can’t I get good guidance on that??

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Health goals should be patient goals, and there needs to be clear guidance on how to achieve them.  Thanks for lending your voice here today, Dave. 

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