Who Will Keep Them Safe?

Laddie

I’m honored to introduce you to Laddie (@MNAZLaddie on Twitter). When the weather here in Minneapolis is nice, she lives here. The other 11 months of the year she migrates to more a more hospitable climate in Arizona. Okay, I was kidding about the 11 months thing, the weather is beautiful here for 5 or 6 months (most years).

She has been such a huge support and inspiration for me, so when she asked if I’d be willing to share a guest post from her I agreed without hesitation. With great pleasure, here she is!


Type 1 Diabetes and My Day on April 15

Almost every time I have two glasses of wine, I convince myself that I should start a
blog about my diabetes. My iPad has ten half-written posts that reflect some of the
subjects and memories that I would want to address. By morning I always know that’s a
crazy thought and I continue my day as someone who has had Type 1 for 36 years and
who is fortunate to have a wonderful life in both Minnesota and Arizona with a loving
husband, two sons with wives, two grandchildren and two more on the way.

This evening I’m being a bit smarter. I have decided to write about my day with diabetes
and how it fits into the larger world around me. Rather than think of starting a blog, I’ve
determined to write what I’m thinking and feeling and beg my good friend Scott Johnson
to let me guest post on his blog site.

I was diagnosed with diabetes in 1976 when I was 24 years old. My symptoms were
typical of most Type 1’s: unquenchable thirst, nonstop trips to the toilet, losing weight,
and bad eyesight. Rather than giving me a c-peptide test and a GAD test which I don’t
think existed at the time, my new internist sent me downstairs to have pancakes and
repeated the urine test 2 hours later to confirm the diagnosis. I was admitted to the
hospital and learned about injections by shooting an orange. Before my diagnosis, I
knew absolutely nothing about diabetes and I started my new life with no worries about
the repercussions of what had just happened to me. I read the pamphlets given to me
at the hospital. I took my once-a-day shot of Lente and faithfully recorded my 4+
readings from my Diastix pee-strips.

Here I am 36 years later at 61 years old. Good insurance has given me an insulin pump
and a Dexcom G4 CGM. I have some of the autoimmune co-morbitities of Type 1 with
hypothyroidism, inflammatory arthritis, and a dermatological condition called granuloma
annulare. But I have no retinopathy, kidney disease, or neuropathy. My endocrinologist
considers me a star A+ patient although I know that I’m not nearly as “perfect” as I might
appear. But I try hard and despite my imperfections, I wake up every day and try to do it
all over again.

What makes today special? A couple of things.

I read Kerri Sparling’s post at www.sixuntilme.com about her beloved daughter whom
we readers know as “Bird”. It wasn’t diabetes specific, but my comment to her said that
reading SixUntilMe makes me glad that I have Type 1 because I would have never
“met” Kerri and read this blog if I hadn’t had diabetes. This caused me to think about
the other people and things that the diabetes online community has introduced me to.
I’ve met in person some of my online friends such as Kara, Susan, and Tom. I’ve
received hugs from Scott Johnson online, in person, and on Twitter. I play Words with
Friends every day with my diabetes friend Sue who lives 2000 miles away. I follow my
friend Kelly on Facebook and pray for her health as she struggles with a foot infection. I
“friend” Doris on Facebook. I argued with her on the ADA forum for years but I
respected her every minute while I did it. My life has truly been enriched by all of my
online experiences and I thank every one of you, my fellow PWD’s.

The second thing that caused me to write this post is the bombings that took place
today in Boston. One of my sons went to college in Boston and although he wasn’t a
runner, he loved the Boston Marathon and felt a part of it because he lived in Boston.
Sometimes I hate the world we live in where someone wants to destroy the people, the
cities, and the events I love. My children and grandchildren may live in a world where
things like the Boston Marathon, the Superbowl, and the Macy’s Thanksgiving Parade
disappear because they are too dangerous. I am able to live a “safe” life in the USA
because my friends Kathy and Caryl have sons in Afghanistan fighting to protect me.
But who is protecting the children of Afghanistan or North Korea or the other battlefields
around our world?

Diabetes seems simple in comparison.

A third thing that hit me hard today was a thread on TuDiabetes where posters were
arguing. It wasn’t by any means one of the more argumentative threads I’ve ever read
or participated in online. But I am at a point in my life where I enjoy hearing opinions
and participating in discussions with lots of viewpoints. The DOC has slowly but surely
taught me to be more tolerant of other people and all kinds of diabetes. So why can’t
we get along? I still cry at news reports of the Newtown shootings, so why can’t our
elected officials work together to reduce the number of guns in our country? I don’t
know who was responsible for the bombings in Boston, but why would you kill and injure
bystanders and participants in an event which celebrates the heroes and heroines who
live among us?

I’m afraid of the big world we live in, but I feel safe and embraced by the diabetes world.
I read blogs and forums daily and I feel part of a large and very important community.
While walking the dog this afternoon, I listened to a DSMA ‘Rents broadcast and
laughed and cried with Type 1 parents Ubergeek and his wife Denise from Alaska. I feel
as though I’m best friends with them and they don’t even know who I am. I have
learned to tweet and I never miss the DSMA TweetChat on Wednesdays nights. I know
JennMamaBear and MyDiabeticHeart. I have 66 followers and I follow 103 people.
Every one of these D-twitterers is special and I treasure everything I know about them.

So what has become of my world where I am glad to have diabetes because of the
magical universe it allows me to live in?

Who will keep my non-diabetic friends and family safe?

“An Orange Peanut?! For Me?!”

Lots of news to spread today! Buckle up for some bullet points.

FocusOnTechnologyLogo400Are you near the Washington, D.C. area (Crystal City, VA, specifically)? Come to the CWD Focus on Technology regional conference and expo happening next weekend, February 1-3, 2013. Sebastien Sasseville is the keynote speaker, and this dude is a total badass. He jogged across the freaking Sahara desert, m’kay?  I’ll be doing a session with my favorite short d-blogger on diabetes devices in the real world. It also sounds like a handful of DOC locals will be getting together for dinner on Saturday night. I’d love for you to join us!

logoRonen Keinan asked for help recruiting early adopters to a new tool his team is working on called Medivizor. It’s a service that offers personalized information updates around serious or chronic medical conditions to people and their caregivers. They believe they have solved the ‘needle in the haystack’ challenge and are able to give you updates that are relevant, understandable, and actionable. If you’d like to help them out, head over to medivizor.com and sign up.

pic small cover uploadI recently finished “Islands and Insulin” by Erin Spineto. Erin lives with type 1 diabetes and was drawn to challenge herself by sailing a 22-foot sailboat down the Florida keys and writing a book about the journey, from conception to completion. It’s an enjoyable mix of love, learning, diabetes, and adventure. The book will hit the shelves soon, and if you’re looking for a fun book with plenty of diabetes mixed in, this might be a good one for you.

photoI’m loving the new look of the Insulin Nation website! I’ve always enjoyed their content and the new site design makes it easier to get to.  If you haven’t had a look, please go check it out. “Iron Andy” and his crew are doing great work there.

diatribe_logoAre you a subscriber to diaTribe? If not, you should be. We spoke to Adam Brown, co-managing editor,  on DSMA Live last night. diaTribe is a top-notch publication that provides incredible information that’s super easy to understand. And it’s free!

indexI recently connected with Stanley Rak, from Food Facts, a website that says it is the largest, most comprehensive internet source for nutrition facts. Anyone out there used this site yet? How does it compare to Calorie King (what seems like the gold standard for many)? At first glance, it looks pretty impressive, especially how it lists common allergens and calls out controversial ingredients. Thoughts?

white-and-black-iphones-heroDo you know about Glooko? It’s a cable for your iPhone that connects to a bunch of meters and downloads your readings. They’ve just released their Logbook Charts site which allows you to get a better look at your information. Along with that, they are introducing their brand new community blog which will focus on real people with diabetes, better ways to use Glooko, as well as recipes and wellness information (site is no longer online).

I have been totally hooked on the “Bad Lip Reading” videos.  ”An orange peanut?! For me?!”

The Cavemen Who Survived

I attended a local support group where the speaker was Joe Nelson, a local psychologist who used to blog with Diabetes Self Management.  I’ve always liked Joe and enjoyed the chance to hear him speak again.

"A hunter attacking a brown bear."

“A hunter attacking a brown bear.” (Photo credit: Wikipedia)

He said something that really hit me.  He talked about being ancestors of the cavemen who survived.  The cavemen who survived were always on the lookout for the bad stuff.  They were constantly preparing for and anticipating, the worst case scenarios.  Everyone else (the happy-go-lucky cavemen) got eaten! We’ve inherited all of the negative genes! That means we have to work harder to see the positive.

I got a kick out of that idea.

I’m traveling for most of the upcoming week.  Attending a Roche Social Media Summit (Roche is paying for travel, lodging, and meals for Sunday, Monday, Tuesday), then staying for the AADE conference representing DSMA Live (on my own dime for the rest of the week).  I’ll be missing my basketball sessions, but Kerri promised that we’ll positive-peer-pressure each other into hitting the hotel fitness center as often as we can.

Scrambled Brain

The Johnson family returned from the 2011 Friends for Life conference late on Sunday. My brain is frantically trying to process all of the magic that I experienced, and I’ve been crazy busy catching up on home stuff. I feel like I need a good solid week of quiet time just to pull myself together.

As I work through everything, I’d like you to take a look at Kerri’s recent blog post about the International Diabetes Federation (IDF). At the 2011 Roche Summit, just weeks before the Friends for Life conference, we met with both Isabella Platon, Head of Communication for IDF, and Jean Claude Mbanya, President of the IDF.

I hope you get a sense of how much impact they had on us and that you start to pay more attention to them.  One easy place to start is with their “O is for OUTRAGE” campaign.  I’ve already sent my postcard.

As I become more educated about them and their work, I’ll do my best to share it all with you.

WEGO Health TV – Diabetes

I am a fan of WEGO Health, a community dedicated to empowering health activists to help others.  I love their mission.  They also helped me get to BlogWorld 2010, which was an incredible experience for me.

Their latest idea is “WEGO Health TV” – a conversational web video series led by Health Activists (if you’re reading this, you are a Health Activist).  The site has just launched into it’s beta/testing phases, so it’s password protected for now (*cough* username: hello, password: welcome *cough*).

Kerri, Ronnie, and I were asked to create the first diabetes related video, and it was a really fun project.

You can take a look at the video (and many others) at WegoHealth.tv – Diabetes Channel (link no longer active…)

Kerri recorded the first clip, then Ronnie and I each responded to it – as if she was in the room talking to us.  She then responded to our responses, and so on.  A total of six little video clips which were then edited together into the final product.  I think it turned out great.

WEGO has asked me to help get people involved in this neat new project.  It’s free (for us) and gives us a great, highly polished, platform to spread diabetes awareness and advocacy.  disclosure: I am being paid a small fee to help with this project.

I would love for the diabetes community to have strong representation on this fun new platform. Would you like to be involved?

You only need three things:

  1. A great topic (I can help with that)
  2. Two health activist friends (I can help with that too)
  3. Any digital video camera

What do you say?  Want to get involved?

—–

Also, thank you all for the birthday wishes – you sure know how to make a guy feel good!

JDRF Government Day Whirlwind

Picture of Scott with Gary Hall Jr.The first session I went to was called “Government Relations 101”. Sounded perfect to me – as I had no clue what I was getting into. Kim and I sat next to each other and listened to a great, high level, presentation about the JDRF and Government Relations.

At some point during the talk, Gary Hall Jr. was mentioned.  Yeah, 10 time Olympic Medalist Gary Hall Jr.! Everyone looked over to the left, and there he was – sitting but a row in front and a couple seats over from us!

After the session was over, Kim and I went to chat with him.  He was so down to earth, and there advocating just like the rest of us.  He wasn’t big bad superstar Gary – he was just Gary, a guy with type 1 diabetes doing whatever he could to help make a difference.

Image of Scott's Dexcom CGM with crazy highs, and a sudden dropBy the time that session was over, it was around 5:00 PM on day 1.  I had only slept about tw0 or three hours before leaving Minneapolis, and the short sleep was really starting to mess with my blood sugars.  Even though I had been throwing bunches of insulin at my highs, they just wouldn’t budge.  Until all of a sudden they did, scared the crap out of me, then went back to being high again.

I have a theory about the lack of sleep and my blood sugars running high.  When I don’t get enough sleep, my body is stressed out trying to keep up with my activities – so it’s likely pumping out all kinds of stuff that make me more insulin resistant than normal.  That’s my story, and I’m sticking with it until I learn different.

The next morning started off way too early, again, but I was quickly drawn into the action.  We were in a huge ballroom lined with tables.  There must have been at least 150 of us in there.  Each and every person took a minute to stand up with a microphone and share their story about why they were there.  It was pretty damn moving.  Lots of laughs, and twice as many tears.

Later that afternoon was the blogger round table discussion.  There were two groups presenting, splitting the audience into two equal sized groups to make open discussion a bit easier.  I presented with Kelly Kunik, Kim Vlasnik, Kerri Sparling, and Cherise Shockley.  The other group was Scott Strange, Allison Blass, Mike Hoskins, and Kelly Rawlings.

They did a live broadcast of our group on UStream (recording below), allowing many more people to tune in.  With all of the questions, both from the people in attendance, and from people watching the broadcast, we could have used the entire afternoon.  It was too bad we couldn’t get to all of them.  I would also love to see a recording of the other group – rumor is that it was recorded and will be online soon.

Lorraine, Jeanne, Scott, Kerri - Type 1 Talk presentationAfter the roundtable session, Kerri and I were asked to help introduce a new tool the JDRF has made available.  Type 1 Talk is a brand new facebook app that allows you to connect with other people touched by type 1 diabetes who are nearby.  You can use this tool to see if there are any local groups nearby, or to organize a get together for coffee with like-minded people.  You’ll hear more about this soon, as I think the JDRF folks are pretty excited about it.

Aside from being introduced as “Steve” (it’s Ok Lorraine – I forgive you, but will not pass up an opportunity to poke fun in a blog post…), it was a pleasure to share the stage with Kerri again.

In the evening we had dinner and listened to a speech by Jeffrey Brewer, President & CEO of JDRF.  I had a front row seat, and was excited to get a feel for Mr. Brewer.  In short, I felt his initial presentation was a little too “canned” or scripted.  But I think if he would have slowed his delivery down just a little, it would have been fine.

He was much more relaxed in the Q&A section of the dinner, and that allowed his passion and personality to shine through.   He gets it.  He talked about his feeling that many of us adults have fallen away from the organization because we’re not being shown all of the good work the JDRF is doing en route to a cure.  We hear “cure, cure, cure”, but as we all know, there isn’t one yet.  So we feel as if there’s nothing happening, that it’s the same old messages over and over again, then we move on, sometimes with (in my opinion) hostility towards the JDRF.

Mr. Brewer wants to welcome willing adults with type 1 back into the fold.  He wants to do a better job of including us in things they are doing, and he wants to do a better job of sharing all of the great things the JDRF is doing as it is working towards a cure.

For example, did you know that the JDRF spent $10 Million dollars to fund a study on CGM use?  It was a study that might have been viewed as a common sense thing – of course CGM use should improve diabetes management, right? But there were no studies done to prove it, so insurance companies were not covering CGM devices as widely as many thought they should.  JDRF stepped up to the plate to fund this study, which provided data which was then used to push for better insurance coverage for CGM devices.  That was $10 Million dollars that nobody else would spend because it seemed like such a no-brainer!  Why fund a study that most would call common sense?  I thank the JDRF for the insurance coverage I have for my CGM sensors.  If they had not funded that study, who knows where we would be with CGM devices and insurance coverage.

Take that example a step further – do you know of any CGM systems that are labeled and approved for use by children? As far as I know, as of today, there are NONE approved for those under the age of 18. How dare we adults feel like the JDRF isn’t doing anything for us?

Later that night, five of us d-bloggers made history.  A live, sweatabetes workout session at 11:00 PM!  It was pretty awesome!  I taught everyone how to do a Turkish-GetUp.  Ginger would have been so proud!  After about 40 minutes of working out, many of our blood-sugars were dropping.  So we made a group decision to head downstairs and have ice-cream, where we met up with the rest of the slackers and made them feel really bad about not working out.

After ice cream, I was coerced into demonstrating a Turkish-GetUp for those that missed the live sweatabetes session.  So I did one.  Using a jar of glucose tabs instead of a weight.  On the floor of the bar.

I know, crazy right?  It’s all Ginger’s fault.

Next post about this? Dinner in D.C. – taking over Chevy’s, with pitchers of diet soooooodaaaaapop (imagine a thick Minnesotan accent…)

Family Support Weekend

Marissa Hitchcock and our Diet Coke.

Marissa Hitchcock and our Diet Coke

I’m spending the week down in Florida with the CWD family. Later this week will be the Family Support Weekend. Kerri and I are getting aquanted with the staff and will be getting our feet wet with a few presentations.

There is something special about sharing time with people who are devoted to helping other people. It’s infectious. It’s inspiring. It makes me want to do so much more. Many, like myself, are volunteering our time and expertise to help make a difference for people. I feel lucky that the people I’m helping are those living with type 1 diabetes, and specifically us adults living with type 1 diabetes.

I’ll post more this week as I can, but for now I’m heading to sleep and trying to forget that it is 36 degrees here (in FLORIDA!). I thought I left all that cold weather back in Minnesota…

In Sand Up To My Ears

Having spent the weekend with George and everyone that came to town for his celebration, I was an emotional basket-case.  I was riding a freaking tidal wave of emotions on the last day of my visit.

To have those fragile emotions rattled around like dice in a cup, then tossed out, one by one, into a coffin with Paul Conroy, was just a little too much for me to handle.

Confusion, terror, claustrophobia, panic, rage, humor, fear, logic, anger, sadness, dishonesty, love, hope, despair, surrender, honesty, survival, wit, limit, compassion, regret, surprise, encouragement.

Those are some of the things I felt and thought as I watched ‘Buried‘.  I could not believe how intense the movie was, and how my emotions were pulled from one thing to another, all inside a tiny coffin buried under a few feet of sand.  I was exhausted by the ending and cried at least 4 times.

I don’t want to give much away, as I’m hoping you’ll go see it.  It was well worth the ticket price and time spent.  Just be sure to go in strong, otherwise you’ll be a complete wreck coming out.

Buried was written by Kerri’s husband, Chris Sparling, which gave me good reason to like the movie.  In all honesty, I probably wouldn’t have gone to see it without that link.  I just don’t go to a lot of movies these days.  I’m mostly jobless, remember?

It was very special for me to be able to go with George to watch Chris’s movie, and the movie itself lived up to, and well beyond, my expectations for such a special event.

Dear Sparling family, just how much creativity is allowed in a single household anyway?

theBetes:NOW

theBetes:NOW is a really fun project that I bumped into at the CWD Friends For Life (FFL) conference.  It’s a project that a couple of the super creative Dunlap teenagers are putting together, and I’m so impressed with how it is turning out.  I’m proud of them, and proud to have had a chance to participate.

From their site: “We at theBetes:NOW aim to serve Type 1 families by offering them a multi-media platform to share their experiences with the larger Type 1 community. We are a project for Type 1 families, by Type 1 families.

They had a neat little station set up right in the hallway of the convention center, and as people would walk by they could record a little message, then it would be edited on the spot, and played on a display screen just minutes later.  It was really fun to do, and I was amazed by Kelley Dunlap editing the videos almost as fast as they were coming out of the camera.

Here’s a picture that I snapped of Bennet & Kerri looking very serious, Crystal Jackson in the background, and if you look at the TV Screen you can see Kelly Kunik, who recorded her scene just a short while earlier.

Kerri grabbed an “action shot” while I was recording my little blurb.  Below you can see the final product!

“Uncle Scott wants YOU!”