Sunday, October 31, 2010

Carby, The Great D-Pumpkin

Happy Halloween 2010!

Overall, it's been a relatively un-eventful but very relaxing and fun Halloween in the Hoskins' Hoosier Household.

We didn't dress up this year, though that's almost not even something to consider nowadays since there's no question I can compete with the cool crayon costume that I sported as a 5-year-old back in 1984, marking my first post-diagnosis Halloween. But it was great seeing all the little kids come to the doors, and it's always fun to see some of the cute outfits and see some neighbors so excited about the fun for their families. We did pass out candy, and of course, I decided to test it and enjoy some myself - just to be safe! It didn't throw my sugars off (too much). That was the end of a fun weekend with a few D-related adventures and surprises.

On Saturday, Mike Durbin from MyDiabeticHeart and his girlfriend were passing through the area and stopped by the house for a quick, impromptu D-Meetup! It was a great time, and for about an hour or so we had the chance to chat in my living room before they got back on the road for the trip back to northern Indiana. Was a great, unexpected good time!

As those two stopped by, Suzi and I were finally taking some time to carve out pumpkins picked up a couple weeks earlier from our local pumpkin-stand market. While we didn't dress up and some last-minute work items came up, we spent some time Saturday (finally) carving our pumpkins just in time for the holiday festivities! Two of our regular-sized pumpkins got the traditional faces, while one of the smaller-sized ones became: Carby, The D-Pumpkin! Yes, this was my pumpkin decorated with D-supplies that included expired infusion sets, a pump reservoir plunger, used blood test strips as the mouth with lancet dimples, and some empty test strip bottles as horns. Carby was even accessorized, with a lancet/infusion set plastic container hat and then a World Diabetes Day Blue Circle Pin on the cheek! Proud of his name, Carby not only displayed who he is but also took some time to advocate for Nov. 14 from atop the cabinet just inside the door where all candy-seeking Trick-or-Treaters could get a view!

So, that was our Halloween. In addition to the Law & Order SVU Scare-a-thon and some Charlie Brown and Garfield movie adventure mixed in, on top of the zombie action on the tube for the weekend. All around good times, once again! For Kelly over at diabetesaliciousness, a Happy 33rd dia-versary to you! Way to go!

Friday, October 29, 2010

Not About The Halloween Candy

 This here is kind of a re-run, or at least a largely recycled one from Halloween 2009. Sorry for not being original, but we just ran out of time on this end and we don't yet have any D-Decorated Pumpkins or the Wilford Brimley getup ready. So, here's a theme that some others in the DOC have echoed for the Halloween holiday. Whatever dressup you may be doing or whether candy's on tap or not, make sure to be safe and have some fun! Oh, and if you haven't yet found the time, head over to the JDRF Walk Page for the Sparling's Six Until Me team page because they're walking on Oct. 31 in Rhode Island! Anyhow, Happy Halloween!
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Every Halloween, it always strikes me as amusing how much you can find online discussing the perfect balancing act for Halloween candy-eating and diabetes management.

Personally, I grew up not caring much about the candy component of Halloween. Sure, I liked the candy and wanted some just like all kids. Of course, I was told that I couldn't have much and would have to work it in or only have a few select pieces from my bag. Now, at age 30, I don't recall being traumatized by this or that it was all that big a deal - it may have been then, I just don't know. There was one house in particular down the street that was always better than anyone else, and gave out that one full-sized candy bar rather than the bite-sized versions typically given out. Had to make a stop there. Even with that, I wasn't like Garfield trying to convince my dog Odie to go with me simply so I could get more "candy candy candy!" (Nope. I preferred the lasagna!)

Really, candy doesn't make the holiday special. It's everything else. More importan than the candy, I recall the fun times of the holiday. The costumes. Being with friends. The pre-season pumpkin carving, party-going, hayrides, and haunted houses. That was more exciting and memorable.

I like to think that has continued into my adulthood, particularly now that I've reached my 30s. We don't yet have children to dress up and screen candy for, but many of our friends do and we always enjoy seeing the little munchkins come to our doors dressed up. So, we have to have the candy bowl stocked and ready to go near the doorway.

Halloween is about the horror, but not the diabetes-style... We all know the D-Horror stories associated with management and complications. That's not the type I'm up for when Halloween comes around. No, I'd rather be up for the classic flick types: Garfield's Halloween Adventure, It's The Great Pumpkin, Charlie Brown; Night of the Living Dead and Return of the Living Dead and all the spawn; usually one of the Halloween movies playing throughout the night; and any other horror classics that might be showing. Gremlins could probably be added to the list to, as that's recently been a discussion topic in the Hoskins Household (we decided it could be either Christmas or Halloween).

Then, there's the cat. I'm confident that we once had a costume for her and dressed her up in little devil ears, but they're no where to be found. So, we may have to craft some makeshift costume. Or, we can just go out this weekend and buy her and the dog one - which is probably what we'll end up doing! So, stay tuned for all of those pictures and more from the Hoskins Halloween over at my Flickr page. I'm sure you won't be disappointed.

What is everyone else doing? Any cool, diabetes-themed outfits such as what Jacquie has described? Any special D-focused plans? Whatever is on the agenda, candy or not, hope it's a great time!

Thursday, October 28, 2010

Support, Advocate, & Educate

No, I'm not talking about my rival college fraternity of Sigma Alpha Epsilon.

(Sigma Pi is the best, of course!)

Actually, we're talking something else here. It's SAE (pronounced “say”) and it stands for Support, Advocate and Educate. This year, Sarah over at Sugabetic is announcing November 1st as SAE day. You may be thinking, “What’s going to be so different about this day than the rest of the month?”. Well, here’s the plan: November 1st is the first day of Diabetes Awareness Month. What better way to kick it off than to have the first day be the day we really push for awareness? The idea is to do something in relation to each letter on November 1st to “SAE” diabetes and raise awareness in a big way.

So, here's the game plan:

This month, lots of people are doing JDRF walks. If you can, support them by donating towards their walk. If you can’t, don’t feel bad! As a community, we can support each other by doing what we do everyday, just a little more. Blogging is some ways that people advocate. If you read the blogs, try to comment on all the ones you read on SAE Day. Let the writers know that you are there to support them not only as a diabetic, but as a D-advocate blogger. Which brings us to…. 


Let your voice be heard. There’s an awesome link through the ADA where you can advocate for Diabetes by sending emails to your local officials to try to raise awareness for diabetes issues in your area. There’s lots of topic, and some are state specific. Head on over there and check it out and try to send out at least one letter today! Another way you can advocate is by being a Diabetes Diplomat for the DRI. You can find more information here.


Tell your story! Find an opportunity to educate someone about diabetes. Blog it, Facebook it, Twitter it, MySpace it! However you’d like to do it. Maybe there’s a co-worker or casual friend that knows you are diabetic, but that’s all. Take the time to educate them today – tell them the facts about diabetes, describe your type of diabetes, show them your emergency kit in your drawer or locker (you do have one, right?), encourage them to ask questions. Through this, maybe we can raise awareness to what living with diabetes really is like, and maybe dispel some of the myths out there. Maybe even take them out for lunch and eat a big slice of cake in front of them to show them we can , in fact, eat sugar!
If you are on twitter and you submit a #dblog about SAE day or do something for SAE day, tweet about it! Use the hashtag #saed (support, advocate, educate diabetes).

So, there you have it: SAE Day. It's all the rage. C'mon. Jump on the bandwagon and help be a part of this broader Diabetes Awareness Day, which looks like it'll be a great way to start of such an intense month of D-Advocacy!

Wednesday, October 27, 2010

Until A Cure, We Camp

I know a little something about Living With Diabetes.

Twenty-six years after my diagnosis, I'd certainly hope that's the case. Particularly since it came at the age of 5 and I don't remember much about life before that.

But even with all of those years, I've got nothing on what it's like to be the parent of a Child With Diabetes. No frame of reference for what it's like trying to function as my child's pancreas and keep them safe in order to not only get through childhood, but to grow up to have a long, productive, successful life.

This past weekend's first-ever DYFI Teen D-Camp Weekend gave me the chance to see some of that first-hand, to get a glimpse at what these incredible superheros will do for their CWD. They'll do anything to help their children Live With Diabetes. Even if that means stepping aside and letting them talk about important, life-shaping experiences with others just like them.

You read the story last week about how this came to be - a D-Mom's vision.

Well, at D-Camp she shared a story that surprised, amazed, inspired, and touched my soul. Some of us were talking about Lows and how we feel and deal. Myself and a few of the other Adult Type 1s who are college-age, and this D-Mom who doesn't have firsthand knowledge except through her teenage son. She shared some of her observations about her son's symptoms, and mentioned that she had no clue what it was like to feel this way. To try and better understand, she even tried giving herself insulin one time to drop Low.

Mom: "I waited and it didn't work, and I felt like I couldn't even do that right. I felt like such a complete failure."

But then, she got behind the wheel and suddenly, when sitting there in the car, she suddenly got a rush and felt the blanket of sweat sweep over her. That sense we all knew was a Low. But unilike us, within minutes and without needing to eat anything, her body kicked in and raised her BGs up to safer levels. Still, she had the experience.

If even for just a brief moment or two, she knew what it was like.

I'd never heard a story like this, and it amazed me.

That was on Saturday. On the next day as the camping weekend came to a close, I had the privilege of being in on a conversation between that D-Mom and two D-Dads talking about why the DYFI does what it does and how that's so incredibly important to these families.

Paraphrasing based on memory, the D-Dads said something like this:

D-Dad: "You know, we all want a cure. I hope so much that the Roches and Lillys and JDRFs out there find a cure. I really do. But they aren't one-on-one with the families like we are. Until there's a cure, we're here for what they really need every day. We help them live with diabetes, until there's a cure."

Other D-Dad: "To know that there's others like them, and there's a place like this where they can talk about these issues they're going through. We don't know what it's like, and no matter how hard we try it just isn't the same as what they're getting through these camps."

The words of an awesome Kenny Wayne Shepard song came to mind at that point, and I even keyed it up on the iPod later at home that evening as those weekend conversations resonated even more. The song is Live On, and  a key part fits right with the theme these parents expressed:

"If I could find a way
I'd take your place.
But you've got to just live on.
Live on."

Live On, indeed.

In talking with some of these D-Parents that weekend, I told some stories of my now quarter-century or so of living with diabetes and made sure to throw in that "I'm not a role model by any means, and am a sign of what not to do." The parents chimed in quickly, disagreeing. Saying that they thought I was in fact, someone their own kids of whatever age could look up to.

Uh, wow. That's kinda scary right there. Regardless of the exact path with various twists and turns that I've taken, those parents see this result - in all its glory - as something to emulate. Being 26 years in, without any noticeable or mentionable complications and being able to have a successful, productive, full life already with more to come. That's what they want most of all.

Those parents all just want their kids - they want US - to be able to Live On. These camp experiences they've helped establish do exactly that, in as much as meters help test blood and pumps deliver insulin. They are live-saving and informative and important and insightful. All wrapped up in a camping experience. Just like so many of us have found refuge and friends in the Diabetes Online Community.

We're all in this together - kids, teens, and adults. We all have to Live On With Diabetes, short of a cure, and until then, we'll camp in whatever we can as a community.

Tuesday, October 26, 2010

This One Time, at D-Camp...

I ate chili out of a pumpkin.

Decorated pumpkins with pump and blood testing supplies.

Sat underneath a taradactyl, and zipped on a rope as my pump clung to my waist for dear life.

Met an incredible group of kindred souls who also happened to be Living With Diabetes, just like me!

The Diabetes Youth Foundation of Indiana (@dyfofindiana) hosted its first-ever weekend Oct. 23-24, where Teens With Diabetes were the focus. The director, a D-Mom to an 18-year old Type 1 son, reached out earlier in the year to see if I'd be interested in being a part of that in some capacity - as a guest, speaker, volunteer, whatever might be needed. I'd agreed.

Yes, I was excited. This from a guy who must now confess that he didn't have much of a chance to experience D-Camp himself in those younger years. I'd attended Camp Midicha in Fenton, Michigan back in the first summer after my diagnosis at age 5... but, thanks to a greedy group of mosquitos that targeted the back of my leg and left a softball-sized bite, it wasn't an experience that stood out as something I wanted to re-live. I remember some fond times, despite that, and even ventured back in my teen years once I'd gotten a driver's license to try volunteering there one summer. It didn't last, unfortunately.

Flashing forward to October 2010: I may be 31, but I was excited about this. Even though I wouldn't be "one of the campers" and even had at least a decade on the oldest of counselors there. So, I was the "Adult Type 1 guest" who got to hang for the weekend. In a sense, it was a little weird being "that guy." But honestly, I felt more like "one of them" than not. We were all the same, and in so many of these teens I saw some of myself.

Twenty-six teens (or tweens) attended, with a majority being girls.

Unlike regular D-Camp, this Teen Weekend had a mantra that everyone was pretty much responsible for their own D-Care. Monitoring, doing what they'd normally do at home. Apparently, less protocol than what happens during regular camp weeks and weekends. Bedtime and pre-meal times brought the requirements of testing and then reporting numbers, so that the head counselor Alyssa (@afaughn, a fellow DOCer and DBlogger over at The Chocolate Cheerio!) could write them down.

Being the weekend before Halloween, the holiday festivities were a theme - from the pumpkin passing game where we got to share how we liked Candy Corn and Cider rather than Glucose Tabs and Juice, to the Pumpkin Decorating with D-Supplies Contest. Not to mention the regular fun like paintball, ropes, zipline, pool, and Wii Rock Band. There was also a contest to guess how many Accu-check strips were sealed in a bottle.

During meals in the dining hall, or no matter where we happened to be, the constant beeps of pumps and CGMs or even blood meters were like a musical chorus. And it felt like music to my ears! Of course, we all had to constantly look down to see if that was actually us beeping or someone else.

The more serious point for the weekend, though, was talking about "those issues" that the teens might not want to chat about with parents or doctors, but might be more comfortable sharing with fellow D-Campers. Like the high school rebellion. The sports/dating/coolness v. D-Management balancing. College prep and the Drinking, Drugs, Driving, & Rock N' Roll issues they'll be facing.

At times, they looked at me (and the other Adult Type 1s there as "speakers") like we had 3 heads. But I think my wandering around with them earlier, zipping on a robe and being led blind-folded across a field with a spoonful of candy corn helped ease the mood. We touched on how important it is to know your own limits, to "be on your game" so that you'll be normal. Since none were 21, drinking wasn't really a topic they'd experienced yet and we gave the legalese-like disclaimers. The two other Adult Type 1 guys, both in their 30s and living with diabetes for 25+ years like me, talked about being athletes in high school (and some college) and how they'd handled drinking. I talked about my own experiences, especially during my "rebellion years" during late high school and early college, and what I'd learned not to do from those situations. One of the other Adult Type1 who was serving as a counselor, a 24-year-old who's married and in her final year of pharmacy school, talked about the same experiences in her own life. Our common elements were the turning points, and one of the high school boys raised his hand.

"I'm listening to you, and it really means a lot because that's where I'm at. I am at those turning points in my life, where sports and dating and school is more important than testing."

We all talked about getting through those times and doing what's needed, not pushing off D-Management for the sake of sports or anything else because then we really wouldn't be able to achieve that level of "normalcy" we're striving for.

After that, we all broke up into groups for smaller personal discussions. The girls divvied up and went to a couple cabins, while the guys went to other cabins. Some didn't have an interest in the discussion and went their own way. We had a small group, and mostly delved into sports and some of those issues like dating. While our breakouts didn't last all too long, the girls appeared to be in their cabins for a couple hours chatting it up. So, some of the guys went on a late-night hike before everyone gathered in the dining hall for snacktime and a choice: PG-13 movie or game-time. Most went with pool and the Wii.

Being "old" and already nearing 11 p.m., I found some tea and fought off some yawns before wandering over to hang with some of the 20-something counselors for a game of Euchre. Lights off came at midnight, and all the campers reported their bedtime BGs to Alyssa - ranging from Lows to a mid-500, who was in my cabin. We all went to bed, and at least in our cabin slept like babies.

Wakeup and breakfast came very early at 8:15 a.m., and of course our cabin alarms didn't go off as planned. But we made it. Mr. 500-BG from the nigh before had come down to the 100s. A county sheriff's deputy, who has a 9-year-old daughter diagnosed July 2009, was my co-speaker for the Driving With Diabetes chat. Less than half were actually at driving age, but most were very close to that point of being behind the wheel. He talked about the police perspective of recognizing and responding to diabetic drivers, and noted how surprised he always is that so few of the D-Drivers he encounters wear any medical identification. He shared that stickers and ID is important, especially given some situations like one that happened in Fishers, Indiana recently where a Type 1 went Low and drove through parks and, despite not injuring anyone, is now being charged with criminal recklessness. I shared my own experiences. I really wasn't trying to use scare tactics and be all negative about it, but a lower BG threw me off somewhat and it felt like I was rambling. The response was positive, though. We talked about the importance of testing, not guessing, before getting behind the wheel. Then another speaker came in to talk about his own son's experiences of driving with diabetes in a more pro-sport capacity. At the end, the teens got some Driving With Diabetes stickers and keychains from DADInnovations.

There was the pumpkin-decorating contest judging and some giveaways, and lunch undnerneath the taradactayl hanging from the ceiling before everyone parted ways to meet their parents outside. The older teens and adults cleaned up, and then the counselors had a pumpkin-smashing round out on the hills in back. While I didn't experience D-Camp much as a kid or as a teen, it's something I find very awesome and impressive here in Indiana and hope to stay involved with. There's already talk of moving it up to the summer next year and different ideas being tossed around, like pump games and such. Whatever happens, I'll bet it will be a great time for everyone involved!

Monday, October 25, 2010

Houston, we have a problem

I’d meant to have a recap today on the wonderful Teen D-Camp experience this past weekend. You know, the one previewed late last week by the Diabetes Youth Foundation of Indiana D-mom who'd dreamed up the idea. That was the plan.

But plans have changed.

You might think that all the fellow diabetics, Ammo Cans of D-Supplies, Chili-In-Pumpkins, D-Supply Decoration of Pumpkins, Deep and Reflective Talk on Teen Topics, and talk of candy corn and cider for treating Lows has just zapped whatever energy I might have had to blog about the weekend. Or zipped, based on the Zip-Line and paintball that ensued.

Nope. That’s not the case. Rather, it’s a darned tooth ache. A darn painful one.

(And “darned” is the censored choice of my censored censoring.)

It also comes as I try to hold a makeshift-office icepack to the right side of my mouth, while juggling work duties and trying to not make eye contact with the aspirin bottle that’s already rattled in my hand a few times today.

One that got progressively worse as the weekend wore on, but that hit in full force today. A case of the Mondays? Doesn’t. Even. Describe. It. Because not only is it causing a massive headache and killing my energy level, but this tooth pain also had the nerve (yes, I realize the pun there) to interfere with my so-needed coffee drinking upon arriving at the office.

Now THAT should be criminal. (particularly when seeing Kerri's Giant Coffee Cup photo post...)

Oh, the Dental Torture.

Of course, this all follows the Dental Torture of the past month thanks to the building gum disease, one of the often-overlooked but very real D-Complications that people just don’t regularly talk about. But it’s been a grueling year for my teeth and inside mouth areas, and it doesn’t appear to be letting up anytime soon.

But, at least my BGs are cooperating and playing nice. So there's that. Which is a What the Fructose moment all in itself...

Anyhow, I’m off to call the dentist, and hopefully get in soon today or tomorrow. Maybe then I’ll be able to find the time and energy – of the not-painful-to-stay-awake variety – to write about camp. Rest assured that there are great photos and fun, more serious lessons, and interesting philosophical points to delve into. I'm looking forward to reflecting and writing... but until then, be well.

Friday, October 22, 2010

Guest Post: A Teen D-Camp Dream

This is a guest-post from Julie Shutt. who heads up the Diabetes Youth Foundation of Indiana's local Camp Until a Cure. She's the mom of a Type 1 teen herself, and has long envisioned a place where teens can have both the camping experience with those "teen-adult" topics weaved in. Where they can talk about sex, drugs, drinking, college, and all of those young adult issues in the presence of those just like them. Her dream becomes a reality here this weeked, with the first-ever Time for Teens Weekend at D-Camp. Twenty-five teens are expected to attend - 18 girls and 7 guys. I'm thrilled to have the chance to attend and talk a little about my own experiences in these areas, and look forward early next week to sharing my recap of balancing that line between being 'an adult' and 'one of them' while there. In the meantime, please welcome Julie!
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My story begins with my son, Nick. He was diagnosed with diabetes when he was four. He’s 18 now. As a mom I wanted to do everything I could to help and support him. We got involved in support groups and walks and he went to the Diabetes Youth Foundation camp for four years. When he got too old to keep going to camp he started working there as a junior counselor.

I took my passion for diabetes advocacy into the professional realm and began working for the American Diabetes Association in Evansville, Indiana. I worked for the ADA for a couple of years before I took the job as Executive Director of the Diabetes Youth Foundation of Indiana in 2004.

In the time I’ve been with the Foundation we have purchased a camp, begun a day camp for children 5-8 with diabetes, and taken teens on three out of state trips (white water rafting in WV, a trip to the Grand Canyon, and most recently a trip to NYC this summer). Helping children and teens is not only our job but our passion. Our board is made up entirely of diabetes professionals or parents of children with diabetes. Several of us have teenagers with diabetes and we know first hand the challenges this age groups faces.

Teens may not be comfortable talking to their parents or doctors about issues and situations that they may be dealing with now or will soon be facing like drinking, drugs, driving and sex. All of these activities will impact their diabetes, but do teens know in what ways?

To address this situation the DYFI's first-ever teen weekend was created. This is a weekend devoted just to teens -- with no parents allowed. A safe place where all these issues and others can be discussed with “twenty or thirty somethings” who've successfully mastered college, careers, living on their own, beginning families and diabetes. Almost the entire staff for the weekend is diabetic. The same is true for the speakers.

The weekend is about teens and so there will be lots of social activities including a paint ball challenge, zip line runs, campfire, midnight movies and field games.

A very special speaker is coming to talk with the teens after dinner, Conor Daly. Conor is an 18-year-old driving prodigy. In fact, right now Conor is ranked as the No. 1 open wheel driver in America! This young man has been racing cars since before most kids were in Algebra class. He comes by his skill and passion naturally: Conor’s dad, Derek, is a past Formula One and Indy car driver. Conor’s accomplishments are amazing, but what makes his story even more incredible is the fact that he has been living and racing with Type 1 diabetes for the last few years.

The goals of this weekend are to expose teens to some positive role models, give them medically accurate information, allow them to ask as many questions as they want, and to support them in their diabetes management and independence.

I can’t take diabetes away for my son or anyone else’s child. I don’t know what a low feels like or a high. I am limited in what I can do for him to make it better. But I can bring resources and education to him and others with diabetes in a fun, supportive environment.

I am so proud that the DYFI has expanded our reach even further and now helps kids with diabetes from ages 5-19. The goal of our camp and program is to help kids and teens self manage their disease for a lifetime of health, happiness and opportunities. Our new teen weekend is another way we are trying to accomplish that.

Thursday, October 21, 2010

It could be any of us

We've lost one of our own.

Thirteen-year-old Eilish died earlier this week as a result of Type 1 diabetes. Her family has been an active force in the Children With Diabetes forums, and the tragic news of young Eilish dying while she slept took everyone and all of us in the DOC by surprise. Apparently another example of what's called "dead-in-bed" syndrome.

I awoke to this shocking news Wednesday.

Like many in the DOC, I lost sleep over this last night. My mind kept returning to this tragedy. Replaying it over and over, until it consumed my thoughts. I'd planned to finish some work from the office home, but couldn't find that focus. Too much tragedy was in my heart, for a girl and a family I've never met and probably never will.

Last night, I cried.

Then, I updated my Facebook status as so many others have done, honoring Eilish and her family and lighting a virtual candle in tribute.

My heart hurts. I'm mad, sad, and scared all at the same time. This loss feels so personal, like it was someone I could've known my entire life. Even though it's a girl and a family I've never met.

But, it comes down to the simple fact that this could be me. It could be any one of us.
We tell ourselves and others that diabetes is hard but "manageable," that it's just "a way of life," maybe to soften the blow that it sucks in so many ways. Maybe to mask the fact that we're scared the heck that there's a real, possibility we can go to bed one night when everything's fine and just not wake up. That no matter what we do, there's never any guarantee we'll be OK.

My parents took care of me when I was younger, battling off Lows and making sure they did what was needed to keep me alive. They ensured I learned how to do this D-Management myself. Now, my wife is there to make sure I wake up if I lose the ability to do so. She's crammed cider, honey, and frosting into my mouth when times I am thrashing wildly or looking dazed and confused. Stabbed me with Glucagon. Called the paramedics more than once when my arm-swinging and fighting became too much to risk to her own safety. Without her, I could've perished several times over. In the past, friends from various parts of my life have been there, too. They have all kept me alive and I appreciate them every moment of every day. Especially when something like this happens.

But young Eilish's death shows that tragedy can strike even when we do everything right, when there are those nearby who will always be there to help us with every single breath.

In describing how her parents had cared for her since the age of 3, it's said: "They absolutely did a wonderful job attending to the diabetes care of Eilish, all precautions were taken, due diligence and protocol followed, pump checked, blood glucose checked all in the most timely manner."

No one did anything wrong here. They did all they could, but this happened anyway. A young girl was taken too early.

We talk about D-Management and work diligently to do our best, all while balancing regular life tasks and the emotional struggles that come with Living With Diabetes. But we always fear this could be possible. We don't like to talk about it, or dwell on it, but that fear is always there. Those of us who were Children With Diabetes, Teens With Diabetes, Young Adults or older Adults With Diabetes. This is a fear we live with, all the time, even when we're testing 12 times a day and obsessively monitoring our CGMs and trying to get ourselves toward "tight control" for a lower A1C.

All the meters and CGMs and low A1Cs and years/decades of D-Management don't replace the fact that you can die because of diabetes. Even when no one "does anything wrong." It's cruel, it's unfair, and it's tragic.

We need a cure.

Eilish unfortunately isn't the first we've lost, even this year, and sadly she likely won't be the last in the long-run.

Today, we remember her and pray for her family. We pray and wish the family well. Then, we continue advocating and educating so that this invisible illness becomes more visible. So that everyone knows that despite all the insulin advances and technological tools we may have, we People With Diabetes are still just on life support. And sometimes, that life support fails no matter what we're doing right. We cherise what we have and what we can do today, and hopefully someday we won't have to endure these tragic deaths from diabetes.

Wednesday, October 20, 2010

Diabetes Message In A Bottle

As most likely know by now, World Diabetes Day is Nov. 14. This one day comes in what's known as Diabetes Awareness Month, at least here in America.

Many activities are being planned nationally and worldwide, and it seems new ideas keep materializing from within the D-Community. Cherise has thought of Blue Fridays for the month of November. For WDD, monuments are being lit up in blue. People With Diabetes are encouraged to participate in what's called the Big Blue Test. The JDRF has created Type 1 Talk with events popping up throughout the U.S. And others such as Mike Durbin at MyDiabeticHeart has asked those of us in the DOC to "Go Blue" in recognition of the month (something I've already done, as you can see from the blog blueness bordering this post!)

Not to mention other items on tap, like some exciting things from the Diabetes Hands Foundation and Diabetes Research Institute. Some of us are even trying to pursuade Google to create a doodle for WDD, though that's a continuing push from past years and doesn't appear that it'll happen - for now.

But, there's more. On the Children With Diabetes forums (where I find myself lurking often and engaging with those magnificant pancreas-mimicking parents), another idea has formulated. This one by the mom of a 6-year old boy diagnosed in 2006.

Her thought: Diabetes Message In a Bottle.

The idea centers on that classic concept of putting a note, handwritten or otherwise, into a bottle and setting it loose on the waters for someone to find on the other side many miles away. That's a concept that's been around for ages. Originally, this WDD idea was exactly in line with any other message in a bottle that might be put into a body of water and cast off into the unknown. But some concerns came about local laws and littering, and how this might not be allowed. Despite how common this activity may be in school classrooms and elsewhere, the environmental impact is an important one to keep in mind. So, the idea evolved into an out-of-water activity to avoid those potentially-illegal nuances.

Now, it's more crafty. Participants can make big cut-outs of blue paper/cardboard/whatever material in the shape of a bottle and write their own D-message on it (ex: Type 1 Diabetes - Keep the Hope for a Cure Alive) and hang them on windows that day. Pictures can be taken and posted online, or emailed around to help spread the word in the "virtual online sea." No littering that way. For those who are even more craftsy, one might try creating a candle-holder out of safe materials in the same bottle shape and have a message written on that - lighting it up on Nov. 14. Or even aquarium owners could use an actual mini blue bottle and do a fun message inside.

All fun versions of the same basic concept, to an extent.

Personally, I like the original idea myself. That to me helps spread the word in that traditional Message In a Bottle sense and advocate for a great D-Awareness. But the crafty versions with online connectivity aren't bad, either.

I'm excited to participate and help spread the word about this idea. A Facebook group called Making Waves is online for people to join. In a sense, this is a great D-Art project that can not only be therapeutic but also an educational advocacy tool to help teach others about diabetes. This is one of so many different activities and events going on that day and in November, but it's an interesting and creative concept that should be a lot of fun for the families and everyone else who might want to take part.

If you're interested, please take a look at that Making Waves page and let it be known that you're planning to participate! We can make waves on WDD, this way and in many others!

Monday, October 18, 2010

Blaming Diabetes

Chicago Bears quarterback Jay Cutler had a bad game recently.

You may not watch football or even know who this NFL quarterback is, but what's a necessary piece of information for this particular story is that Jay is a Type 1 diabetic. The 27-year old from Indiana has been playing pro football since 2006 and in early 2008 he announced his Type 1 diagnosis. Since he's been playing with Chicago, there's only been one time he's mentioned diabetes has interfered, but he treated that Low without much issue.

Most recently, Jay took a beating in the Oct. 3 game against the New York Giants with a 17-3 loss that included nine sacks in the first half alone. He was making wrong moves. Holding on to the ball too long. Throwing wildly. Looking dazed and confused, at one taking a few steps toward the wrong side before realizing his mistake. Just before the half, he was knocked out of the game with a concussion that would then keep him out the next game.

That's when the commentary started, in the sports community as well as in the Diabetes Community. Someone linked to a post-game Chicago Sun-Times column in the Child With Diabetes Forums, saying that they were upset with how this particular columnist was questioning Cutler about his diabetes and whether that was to blame for the beating he took against the Giants.

Relevant to this post is the section of the column that states:
Did his diabetes have anything to do with it? That is a very personal question, but it is a valid one for this highly paid athlete. It is noble and courageous that Cutler plays pro football at all, let alone stars at the sport, with Type 1 diabetes, a disease that forces him to measure his blood-sugar and insulin levels constantly, even during games. To be slightly off on those levels can cause a diabetic to have blurred vision, reduced reaction time and slight loss of judgment. And who needs total awareness more than an NFL quarterback? We largely have forgotten about Cutler's battle with diabetes since he came to Chicago and was very open about his dealings with the late onset of the disease. But it is there. And one can't help but wonder whether the blows to his head, combined with the possible internal effects of diabetes, had anything to do with this horror show.

Now, some took offense with the very question of this being D-related. Others took issue with the notion that a Type 1 could be "slighty off" and that might cause blurred vision, reduced reaction-time, and slight loss of judgement. As parents, this was a form of misinformation about diabetes and it infuriated them and caused concern about what message this might send to the general public about what we People With Diabetes can and can't do.

Not everyone on the CWD forums or those column commenters were upset about question or tone, though some clearly did and voiced their frustrations online. Some resented the fact that this writer was blaming diabetes without actually knowing whether it played a part or not.
For the record, Jay spoke recently about that game, saying that it was not his Type 1 diabetes to blame - but rather the concussion that he sustained at some point. A story quotes him as "squashing speculation that the hits he took affected his blood sugar and therefore his decision-making. Cutler called those claims 'completely false and ridiculous.'"

So, there it is from him saying that the D is not and was not to blame. That while they symptoms demonstrated may have mirrored those of a Low BG, the behavior was the result of the concussion.

Personally, this column didn't bother me. I see it as a valid question that the general public might raise about any pro-athlete PWD. You can't change the fact that they have this condition, and that as a result Lows or Highs might throw off performance levels at times. We all face this in our daily D-Lives, from issues that come up at work or instances where we must change driving, exercise, or other plans because of where our blood sugars are at. There's no denying it. But we recognize and acknowledge and don't hide this fact.
So many of us are living examples of how any PWD can have a successful live despite being diabetic. Same goes for those like quarterback Jay Cutler, skiier Kris Freeman, swimmer Gary Hall, and mountain climber Will Cross - and so many many others who exemplify what is possible and that you can achieve your dreams even with diabetes. They've had D-issues while doing their respective sports before, and they've admitted and talked about that. But those occasional interferences haven't dampered the broader message and success stories each person embodies by just being there in the first place. I'd have the same rationale in describing anyone outside the pro sports arena who might hold a job, live a successfull life, and do whatever they might need to do well despite also living with diabetes. Though it's a big part of our lives, we are all more than just diabetes.

Growing up, I played baseball up through high school and then swam varsity for all four years of high school. While I had some instances where D did get in the way, it didn't limit me in how I played or how others viewed me as a teammate. Honestly, I only recall using my Type 1 a few times in my younger days as an "excuse" to get out of climbing a rope, doing pullups, or swimming a particularly grueling lap in the pool. Those times aren't something I reflect on proudly, though, but rather I see them as a learning experience - I had to feel what it was like to not participate, to be limited. That never became a habit, if for no other reason than to prevent it from becoming a reason for others to view me as "the diabetic kid" who might not be able to do something the same as everyone else. Sometimes, they - and we - must blame diabetes. It's unavoidable. But our own actions and those of the high-profile athletes like Jay Cutler demonstrate that we CAN do these things and might just succeed or screw up like anyone else has the ability to.

With that, I'll open it up to the DOC: What do you think about this? Have you ever had to blame diabetes while competing, or during your daily duties? Do you see this limiting in any way, and how would you think the general public might respond to that more regular-life situation where D may interfere?

Thursday, October 14, 2010

Envisioning No More Diabetes

This post may seem like more of a public service announcement for the American Diabetes Association.

So be it. On one hand (HA!), that's a worthy PSA to be made.

Leading up to American Diabetes Awareness Month in November (which includes World Diabetes Day on Nov. 14), the ADA is following up to its new 2009-created campaign called Stop Diabetes - which has the "audacious goal of gathering the support of millions of Americans to help confront, fight and most importantly, stop diabetes."

Starting Oct. 15, the ADA is asking: "How will you Stop Diabetes? The future is in your hands."

We are asked to make a video to answer that question.

People can answer that question through a video submission, in a contest that the ADA is promoting online. You are encouraged to "share your vision to stop diabetes" by posting a video on, incorporating the hand as a symbol of the movement in a 30-second video online to show your passion and commitment to changing the future of diabetes.  Some sample videos are available online, to spark ideas for this contest sponsored by VSP Vision Care. Once the video submissions are complete, the public will be able to vote for the most compelling video. In the end, the top 3 finalists will receive an Apple iPad and the winner will be a part of a Stop Diabetes public service announcement. The deadline for video submissions is Nov. 30, 2010.

(\Begin Digression: Now, be forewarned: The stories that are already submitted have a good amount of Type 1 connection, but there are those others focused on only Type 2. Some stories flash the stereotypical "my grandmother succumed to diabetic complications and died" stories... Not to belittle those tragic stories that are indeed heartfelt, but that's something we in the Type 1 Diabetes Community often get thrown into our faces. This isn't the sole reason why we fight for an end to diabetes, because we know that long successful and complication-free lives are ACTUALLY POSSIBLE. /Digression Ends.)

Aside from this video contest, people are also encouraged to join this "movement" in other ways, such as giving, volunteering, learning, and advocating. Apparently, more than 600,000 people have joined this movement (as reported by the latest ADA figures) and the ADA is very focused on letting people know the organization is the largest national movement to Stop Diabetes. Most recently, Rite Aid has joined this campaign and is offering incentives for people to take Diabetes Risk Tests, distributing D-guides at every pharmacy counter, and hosting more than 1,200 free D-clinics during November.

First, these moves are great. I applaud Rite Aid for doing these things. I commend the ADA for wanting to raise more awareness overall about diabetes, and some of the materials it offers online do encourage that and even touch on Type 1 - something that many long-time Adult Type 1s see as a shortcoming of the ADA. We had a great conversation with group leadership earlier this year in Orlando, and some of what they said was encouraging - though we shall see what comes from all of that.

However, I'm a little bothered by this message overall to "Stop Diabetes." To me, it seems to imply that we can just "flick a switch" and somehow stop diabetes. You look at the 23.4 million stat of those living with diabetes, and see the leading lines of this Stop D Movement talking about how more people die from this than AIDS or breast cancer combined... just those two points push me away from wanting to be a part of this. Really, it taps into that ongoing longtime feeling by so many that the ADA is just T2 focused, that it refuses to weave Type 1 into its larger advocacy marketing. As if anything we do to join the ADA will somehow prevent Type 1. Granted, Type 2 is a different beast and maybe it can be prevented more to an extent. But in looking at this campaign, my natural feelings of Type 1 getting the short end of a stick come to mind. So much of this seems as though it's just the ADA trying to boost its numbers and membership and not truly embracing what it professes to embrace. Of course, the same can be said about the JDRF and other organizations... We try to give them the benefit of the doubt and move on, hoping for something we aren't expecting.

I want to cure diabetes, which is something that the JDRF is obviously the leading organization on that front. To stop diabetes? Sure, ADA. Stop. Cure. End. Eradicate. Vaporize. Disassemble Johnny Five... Whatever.

I'd just like the JDRF and ADA work more together on "curing" or "stopping" diabetes. To me, that's what World Diabetes Day does for me - it bridges a gap that the two leading groups aren't willing to bridge at this point. They both have their bottom lines and goals, and the overall elimination of diabetes of any type isn't their focus - it's "stopping" or "curing" it and then claiming their mission has been met.

But, we move on from those sentiments. I continue walking with the JDRF and raising money for a cure. I will make a video to do my part in advocating to "Stop Diabetes." Whatever works. Whatever inspires and maybe makes someone else aware of what they can do, or what they might need to know. I commend our fellow D-blogger and social media guru Dayle Kern for working with the ADA on this front and being a part of the solution.

In the end, I guess it doesn't much matter to me whether we "cure" or "stop" diabetes. I just want everyone to work together in that mission and advocating for the best possible way we can all Live With Diabetes successfully short of it no longer existing.

Tuesday, October 12, 2010

Let's Talk

I have something to say.

But more importantly, so do you.

That's why the JDRF is moving ahead with what it calls Type 1 Talk, giving us another platform to talk amongst ourselves on any number of important diabetes-related topics.

You'll recall that I'd recently written a post about the JDRF's new effort being launched for the entire Diabetes Community on Nov. 14, which is World Diabetes Day. This is somewhat monumental in that it's the first time the 40-year-old organization has acklowledged at the national level that this day even exists, let alone that it has a plan to do something to mark the day. Using the energy around that day, the JDRF appears to be trying to use its national might to start some conversation locally, rather than relying on the efforts of local chapters that can be at best scattered and not-quick-to-action.

The needs of the Adult Type 1 Community have long been ignored by the JDRF, and we Children With Diabetes Who Grew Up often have felt abandoned by the organization that proclaims to represent us and that big Hope for a Cure. Now, this Type 1 Talk looks like it could be the start of a bridge to filling that void. My friend and fellow D-Blogger Scott Strange over at Strangely Diabetic has written on this as well, given his 40-years of Living With Type 1. We are both encouraged by the efforts here, and hope it's the start of something great.

Basically, this is a huge network of local D-Meetups on World Diabetes Day that will all be connected through the JDRF's use of a new Facebook application and a live video streaming Q&A. We People With Diabetes can submit topics in advance here. Participants can meet new people or already-established friends in their community through "events" at homes, offices, community centers. Not just meeting, people will be able to view a live streaming video presentation from JDRF staff and volunteers, ask questions, and then continue those conversations at their local events. People can host their own event or find one to attend, and we can also talk with other Type 1 Talk participants and access event materials or resources.

Here in Indianapolis, it looks like we have a few already in the works: one that may be more family-focused with some parents or even medical professionals interested, another being organized by some of us Adult Type 1s, and still another that may be one emphasizing the local JDRF Advocacy efforts. I've created a page using the Facebook application where people can find and sign up, or even use that as a jumping off point to create their own.

Now, I'll be the first to admit: I didn't "get" this at first. My initial reaction was something like: "Oh great, another 'event' where the JDRF will want me to give them money or 'advocate' for a cure." But then I had some discussions and delved into what this is all about and saw that I was wrong. I've realzied that this picks up that local meetup-loving mantra that the Diabetes Online Community so incredibly embraces and represents. It sidesteps the haphazard local efforts and encourages people to just get together, but then connects them with a national JDRF discussion on topics WE'VE asked them to discuss. Now, I do hope that the topics aren't all focused on research, cure, Artificial Pancreas, and specific JDRF Advocacy campaigns and initiatives. But rather, I'd like to see other topics embraced, such as the Diabetes Online Community and what a resource this can be for the newly-diagnosed, the longtime D-veterans, or the families impacted by diabetes. How do we use these tools to better engage and manage our health, and help others do the same? The JDRF has a huge platform here to engage in something bigger than itself, and we'll see if it's willing to step away from just those internal priority messages to tackle topics that are important to the entire D-Community.

I have to admit: I am excited and energized by this initiative. While we're starting off with WDD now, this could become a regular thing not confined to a specific day or time. That's even more encouraging to me. But I'm only one person in a massive population of people who need to be convinced. Maybe this will be a starting point for them, and for you, too.

As we approach this date a month or so away, please take a look at Type 1 Talk and consider joining the conversation. Some 45-minute training sessions on using this new Facebook application tool are being hosted, starting today:

Tuesday, 10/12 at 3pm EDT
Wednesday, 10/13 at 11am EDT
Thursday, 10/14 at 7:30pm EDT
Friday, 10/15 at 12pm EDT
Monday, 10/18 at 1pm EDT
Tuesday, 10/19 at 4pm EDT

Let the JDRF know what topics YOU want to hear about, and let's all join together and use this as a way to spark some meaningful and productive dialogue on World Diabetes Day.

Monday, October 11, 2010

On the Streets of Indianapolis (Again)

This is a sequel. A follow-up to Friday's post about my adventures here on the Streets of Indy. A place where glucose tablets bring us diabetics together. Where we mull meetups that involve Singing & Dancing Rollerskating D-Meetups potentially rivaling the likes of #dprom. Where our centralized spot in the nation means we Hoosiers have what can only be dubbed the Diabetic Crossroads of America. You should read that post first. Please. Go ahead. I'll wait.

Now that you've read that, you're primed for Round 2.

My adventures last week continued on Saturday, with the Central Indiana JDRF Walk to Cure Diabetes. More than 3,000 walkers attended, and this happened to be our first-ever walk we've participated in since moving to Indiana about six year ago. I'd been involved for years up in our native Southeast Michigan, starting with my first walk-ride back in 1985 and evolving into volunteering and mass fundraising in my college years. But once we moved to Indiana, I hadn't been involved in the JDRF and it seemed the walk in early October always ran into a conflicting event, work time, or travel plans. Since jumping back into the D-Advocacy World late last year and getting more heavily involved in the JDRF this year, we committed to making this year's walk one of our must-dos.

While the homefront of Michigan was always a good time for a Walk, this Hoosier style seemed even more special as we were surrounded by huge banners displaying big names such as Lilly and Roche - located in this very city. We ventured onto the 5k Walk around Military Park on the city's westside, near IUPUI campus and the White River State Park. Great scenery, and beautiful sunny 80-degree weather.

Suzi and I didn't do massive fundraising, but set modest goals and thanks to the wonderful generosity of friends, family, and especially several friends in the DOC, we both surpassed our goals this year! Thank you all, so much! That fit the trend with the walk, which organizers said also surpassed the overall goal for 2010!

We arrived that morning about 45 minutes before registration started, and planned to mingle for awhile before getting to where we needed to be. We registered and got our shirts, which Suzi shows off to the right there while wearing her Got Islets? hat. Wandering for awhile, we explored the tables and booths set up around the area and were even delighted to see at the food table the items had carb counts! The Starbucks coffee tent was also a must-visit for me, and it was a much-needed boost for the morning.

Some familiar faces were scattered around, too. Like Stephanie Riner, who I'd met earlier that week at a D-Meetup and who did a wonderful job singing the National Anthem - the third or fourth time she'd done so. We connected and said hello afterward, before making our ways to our respective team locations to start walking. At one point, Suzi and I were walking along one street having our own little side discussion and I happened to glance to my right and see a familiar face: fellow D-Blogger and friend, Cherise! She and her husband were there walking, pushing their daughter in a stroller! We laughed about that and said hello, and then it dawned on me that this was actually the first time Suzi and Cherise had actually met! They hit it off well, and of course Cherise managed to snap a photo of us on her iPhone while walking and Tweeted that isntantly. She also took a moment to mention to Suzi that I needed to make the switch to an iPhone myself, carrying on a conversation that had started over the summer. She also gently reminded Suzi about some now long-overdue cupcakes honoring Cherise's previous goal of hitting 20,000 tweets. (Before long, Cherise, we promise!). After a few minutes, Cherise realized that her family had managed to escape far ahead and so we said goodbye as she went to catch up.

Riley, of course, came along was with us and VERY EXCITED to be a part of an event with so many people. She loved being a part of it, though wanted off her leash so she could run around and see everyone. The PetSmart table offered some water, a tennis ball, and frisby and let her see a congregation of friends also out walking. We'd arrived about two hours before the walking began, yet despite all that advance time Riley decided that the first lap of the walk was the best time for her to squat and make me utilize the plastic baggies in my pocket. The team kept on trucking along as I cleaned up her mess, then dog and I jogged ahead and eventually caught up. This whole time, Riley was sporting not only a great JDRF Walk to Cure Diabetes bandana that represented our Team s5health name. But she also had on underneath that a valued Maize & Blue bandana to honor the University of Michgian, which had a very important game against rivalling Michigan State University that day (the result of that game later that day isn't one to dwell on, sadly). My mom made both, and they turned out great for the dog to represent appropriately. So, thanks Mom! Everyone loved them, and Riley displayed them proudly!

So, that was our first Hoosier-styled Walk to Cure Diabetes! We had a great time, and look forward to making it a tradition from now on!

Friday, October 8, 2010

On the Streets of Indianapolis

My name isn't Bruce Springsteen and this isn't Philadelphia.

Nope. This is my own story about chance encounters and meetups and all the happenings here, on the Streets of Indianapolis. A place where you never know adventures and encounters may come your way.

Lunch time Wednesday: I was writing some stories on deadline at work, trying to stretch out the time until a meeting wrapped up and led to some free leftovers. But blurry vision and confusion paved the way for a blood test, revealing a 51 mg/dL. My waiting was done, and I grabbed four orange glucose tablets from the desk drawer as I made my way outside for the walk to a nearby sandwich shop. Stepping outside into the crisp October afternoon, I squinted in the sunlight and turned to my left as I stuffed a second glucose tablet in my mouth and kept walking.

Suddenly, a woman with her arms full of files and papers stepped in front of me, blocking my path.

"Do you remember me?" she asked.

I did. She was a fellow longtime Adult Type 1 who also worked downtown and someone I'd met months earlier at a JDRF Promise to Remember Me Campaign meeting with Sen. Evan Bayh. We exchanged hellos, name reminders and quick "how are yous," and she mentioned how she saw me walking while putting what looked like a glucose tablet in my mouth. Sharing my delayed lunch account that led to the recent 58 mg/dL reading, she offered to cut the conversation off to let me walk but I mentioned all was OK. She asked if I needed any more glucose tabs, and I said the four I'd eaten would be enough. We exchanged some business cards and vowed to keep in touch, then ventured off in our seperate directions.

Oh, how glucose tablets can bring us Type 1s together!

This made me think about others in the Indy area who lived or worked nearby, and it also made me reflect on the upcoming Adult Type 1 D-Meetup planned for Thursday night. A JDRF-affiliated event, this was our second gathering in recent months aimed at bringing the local Adult Type 1 Community together. Four of us gathered the first time, but this sequel brought some even more faces out for the D-Meetup - including several from the Diabetes Online Community!

Aside from myself, we had DOCer Megan Bartholomew (@medbarth) and Alyssa Faughn (@afaughn) from The Chocolate Cheerio. Those two actually get awards in my book, not only for traveling the furthest distance from Bloomington to Carmel (70ish miles) but also for having the most in common - same age, diagnosed 10.5 years ago, both seniors at Indiana University studying medicine or research, and both longtime attenders and participants of the area's D-Camp. With Neal (diagnosed as a teen about 16 years ago), Aaron (diagnosed with LADA about two years ago), and Pat (diagnosed as a ten about 27 years ago) who'd come out to the initial meetup, we also got a chance to welcome Stephanie (diagnosed at age 20 about 12 years ago) who regaled us all with wicked tales of her passion for dancing, choreography, and singing the national anthem at the Central Indiana JDRF Walk every year!

[Sidenote: As it happened, this D-Meetup came just two days before some of us would be participating in the annual walk. Suzi and I are a part of the seven-person Team s5health and we're excited about being a part of our first walk since moving to Indiana six years ago. Not only that, but the Riley Dog gets to walk with us to make it an even more exciting time. (She even has some personalized walk attire that I'll show off early next week!)]

Back to the D-Meetup... Sadly, it wasn't until I arrived at the steakhouse and bar on the northside of Indianapolis about 6 p.m. that I realized my camera battery was dead. Thus, no photos this time around for the couple hours we sat around chatting it up about every topic under the sun: our day jobs or schooling, basic backgrounds, how many Type 1s we knew locally or from where we were from, D-Police, ADA versus JDRF and Support Groups vs. Meetups, singing & dancing, pumping vs. injections, CGMs, Endo visits, medical misinformation, D-Camp, Symlin woes, thyroid craziness, the DOC, and the JDRF Type 1 Talk that is being launched for World Diabetes Day on Nov. 14. The menu was explosive with options, and more than one of us set our gazes on these massive stuffed mushrooms that were so incredibly bolus-worthy! There was some unofficial agreement that our next meetup may involve some type of Rollerskating Dance Meetup, possibly mimicing #dprom, but we tentatively left it that we'd all gather again for WDD and the Type 1 Talk events. We'll see what materials there, but it's already shaping up to be some more future meetups here in and around Indianapolis.

But before those WDD events come to be, there's the Walk this weekend around Military Park in downtown Indianapolis. Where thousands of PWDs with their friends and families will be walking together and having a great time. Weather forecast is sunshine and mid-80s, so all looks good.

While they happened at different times, all of these above examples illustrate a common theme: how mood-changingly positive the Diabetes Community is. Each time, before whatever event or meetup or experience, I wasn't feeling very good. As Bruce sings it: "I was bruised and battered, I couldn't tell what I felt." Life stresses, deadlines, woes that just made the sky a little darker. But then there'd be a D-Meetup. Or a #dsma discussion with the Twittering Creator Cherise on the north side of Indy. Or a blog I'd read from home, capturing a community feeling or moment. Or a fundraising event or phone conversation. Then, all would seem better. If even just for a little while.

So, from the bottom of my heart, I say to all of those PWD: "Thank you, from this little corner booth on the Streets of Indianapolis."

Thursday, October 7, 2010

No D-Day: Gremlins in my House

Today is a day when we write about anything NOT related to the chronic conditions we are living with. This idea is the brainchild of The Great Ninjabetic. This means no blogging, Tweeting, or Facebooking statuses on that subject. George describes it this way: "We are more than a disease, a lot more and tomorrow is a day to share some of that. There are many facets to each one of us and since we do talk so much about our D lives, we maybe miss some other cool stuff about each other. It’s not easy. It is a serious exercise to avoid all D talk but, I think it is a positive step in seeing that life is more than diabetes. We are more than diabetics or People With Diabetes. We give diabetes a lot of attention, let’s spend one day and give the rest of ourselves the spot light."
Since I'd neglected to mark this on any calendar and didn't even remember it until sometime later Tuesday, I had little time to get my sass in line for a specific Non-D post. My mind rolls through ideas, trynig to find the best one: Pull one from the past? Write about journalism, or the future of newspapers? Politics? My Faith Journey? Our homestate of Michigan and how we traded in lakes for cornfields more than six years ago? That Crazy Shadow Cat or Riley Dog? My Hoskins Family Genealogy Project that traces my roots back to Bartholomew Hoskins who came to America back in 1615...?

So many topics, but I couldn't settle on one as the time rolled toward the deadline.

This exercise began at 12 a.m., and as the midnight hour rolled around it became clear that we might encounter some questions began surfacing about how this all would practically play out: Is there a specific hash tag to use? Can we mention "diabetes" in our posts without actually writing about it? How much can we delve into this concept without crossing some line of actually delving into the topic we're meant to avoid? Oh, the mind games. And then there's those pesky time zones, which meant some of us in the Eastern and Middle parts of the country would hit the "No D-Day" roadblock before those to the West...

I began to feel like a Gremlin.

Instead of not being able to feed the cute little Mogwai after midnight, I wasn't able to post or write about my health. I thought about the food-stuck-in-the-teeth issue from the movie, and wondered what happened if I wrote something before 12a, but it got lost in cyperspace and then actually went online after the deadline. Pondering these issues and still struggling to pinpoint a particular post topic, I even managed to spill a glass of water on myself.

Luckily, there were no adverse effects as was the case with Gizmo and the Gremlins.

Up late, I wished I had thought about this earlier rather than dealing with it at such a late hour. With work deadlines hanging over my head, I was staying up to write stories and the pressure was weighing down on me. At that point, it became painfully obvious that I was in need of a Flying DeLorean with a Flux Capacitor, to rewind time and got back to an earlier point in the week.

That's when it dawned on me. A writing subject, I had found (Me, being all Yoda-like.)

Subject: Movies. Great classic flicks from the 70s, 80s, 90s, and "today." You may have guessed from this and past posts that I'm a movie buff in the sense that I quote them often, firmly believing that much of our wisdom in life comes from movies and those creative geniouses who penned the scripts. (Plug for Buried, the writing creation of Chris Sparling that rolls out nationally on Friday, Oct. 8). So, here was a chance to reference them and list some of my favorites in no particular order.

  • Gremlins: As mentioned above, you can see why it's a great flick. There's nothing like cute fuzzy little pets turning into little green creatures and multiplying exponentially. Swinging from ceiling fans, invading movie theater popcorn ovens, and causing havoc in a small little community. Great theme song, too.
  • Animal House: I am a Sigma Pi Fraternity man, and despite all the stereotypes in this movie that just don't portray how most modern fraternities operate, it's still an irreplaceable movie worth watching and citing in everyday situations. The quote-worthy list is almost endless, but I'd go with this one at this time: "Fat, drunk, and stupid is no way to go through life, son."
  • Back to the Future(s): My ultimate, all-time favorite movie trio. The first from 1984 is the 1st movie I ever recall seeing as a child, sitting on the floor of my paretns' family room in my pajamas. If there's any movie I can quote every line from, it's BTF Part I. And I'm not too far off in the latter two. We're nearing 2015, though, and the countdown for those Flying DeLoreans is coming down to the wire here. I'm not seeing the promised progress. Doc Brown should get on this. We may need 1.21 Jiggawatts to make it happen!
  • Braveheart: "Every man dies. Not every man really lives."
  • Caddyshack: Be the ball. Just don't kill all the golfers. And, always appreciate advice from the Dalai Lama, 12th son of the Lama with the flowing robes, the grace, bald... striking: "Gunga galunga... gunga, gunga-lagunga. So we finish the 18th and he's gonna stiff me. And I say, 'Hey, Lama, hey, how about a little something, you know, for the effort, you know.' And he says, 'Oh, uh, there won't be any money, but when you die, on your deathbed, you will receive total consciousness.' So I got that goin' for me, which is nice."
  • Cocktail: Once upon a time, I dreamed of turning my banquet hall waiter gig into a bartending career on an island somewhere. Alas, my "Cocktails & Dreams" didn't materialize and I did not became the last barman poet. Yet, one scrap of wisdom to take from this movie: "Coughlin's Law; Anything else is always something better."
  • Anything from the 80s, particularly those starring Molly Ringwald or Anthony Michael Hall: You name it, these movies are the bomb-diggaty. Breakfast Club (the best). Weird Science. Sixteen Candles. Pretty in Pink. There's others, but those are some highlights. Oh, and St. Elmo's Fire must be mentioned - as it has the love theme Suzi and I played at our wedding reception entrance five years ago.
  • Office Space: "It's not that I'm lazy, Bob. It's that I just don't care."
  • Princess Bride: "Hello. My name is Inigo Montoya, you killed my father. Prepare to die."... "INCONCEIVABLE!!!!"
  • Godfather: Well, of course this was going to make the list. Having the ability to list it is like an offer you can't refuse.... Quotes are many, but when in doubt: "Go to the mattresses."
  • The Paper, I Love Trouble (the remake from 1994): Being a newspaper man, these are two outstanding movies in my world. Plus, I love Julia Roberts (from the Pretty Woman and Steel Magnolias days and so on...). Journalism words to live by are a scene from where the editor is reading from a dictionary: "Deadline: A date or time before which something must be done." For me, this is a work in progress.
  • Shattered Glass: Staying on the newspaper theme, this is an important movie from 2003 about the fall of a young journalist who fabricated more than half of his work. It's about plagiarism, stealing content -> what you NEVER do as a reporter, or for that matter anywhere. But sadly, it's a practice that does happen and hurts those of us working every day to do it right.
  • Star Wars: They aren't movies, they are a way of life. They have their own culture. No, I don't dress up like Darth Vader or anything. But I do watch the Clone Wars on CartoonNetwork. Classic good versus evil stuff. And yes, Yoda does rock. "Do, or do not. There is no try."
That is a small portion of the list that comes to mind. What are your favorite movies and what do you take from them?

Now, since the midnight hour has long since passed, I must venture away from the computer and try to grab some sleep. But first, I'll tiptoe downstairs and investigate the strange noices I'm hearing in the house. You might want to, too... If your air-conditioner goes on the fritz. The washing machine blows up. The TV conks out. Before you call the repairman, turn on all the lights. Check all the closets and cupboards. Look under all the beds. Cuz you never can tell. There just might be a Gremlin in your house.

Wednesday, October 6, 2010

Pumping at Diagnosis?

A recent discussion over at the Children With Diabetes forums got me thinking about whether I'd want to have the option to start insulin pumping at the time of my diagnosis.

Granted, I was diagnosed back in 1984 when pumping just wasn't mainstream like it is today. I spent the first 17 years of my D-Life on insulin injections, ranging from one or two a day to four or five, before the carb counting days when MDI became the norm.

Personally, I've always appreciated the fact that I spent considerable time on injections before getting the pump. To me, this allowed me to more appreciate the "freedom" and "flexibility" of an insulin pump as I specifically recall what it was like NOT being on the pump.

On that note, I have long-felt that newly-diagnosed Ds - whether children or teens or adults - should stay on injections for some decent length of time. Without any rationale for choosing this number, that period in my head has been 1 or 2 years. Why a year or two? Well, it just seems like a decent round number to me for someone to get past that "honeymooning phase" and allow them to learn the daily routines of a D-Life. No scientific basis for it.

In the recent CWD discussion where I offered my thoughts, many parents came back saying that I was somehow off basis for wanting to "reward" a child with a pump, or that I was somehow wanting to "punish" a person with some arcane treatment method rather than doing what is obviously a better option. Am I not giving newly-diagnosed teens and adults, or those parents of CWD, enough credit for learning the ropes? Is this equivalent of me saying that any new Type 1 should have to test their urine to appreciate blood meters?

The most laughable forum claims against my rationale was that I wasn't a parent, and just didn't know what it was like to have to inject a small child with a needle multiple times a day and listen to that child scream and cry as this happens. No, they are correct: I don't know what it's like to be a parent. But I have listened and watched enough YouTube videos and blog posts from these same parents who also hound on the fact that they must regularly stab their children with infusion sets and CGMs and that crying and screaming sounds the same to me. Either way, it sucks we and they must endure this lifestyle. But it is what it is. And you get used to it as life goes on. It's the parent who can't stomach the practice, and they are the ones who simply don't and will never understand what it personally means to have to endure these injections or pumping  - unless they are a Type 1 themselves.

If you are making the argument that pumping eliminates the "screaming and crying" of it all, then please don't promote that same screaming and crying when pushing for donations for ADA and JDRF walks. That just seems hypocritical to me.

Curious about what my mom might say on this topic, I asked her and here's what she said in regard to my having a pump at diagnosis:

"You did cry at first but really not a lot. When you were diagnosed and put in the hospital for three days, I stayed there with you. When Nurse Kathy came and taught you how to give yourself shots, she was really good at it. We just explained to you that now you would have to be like me and take these shots every day and that would make you feel better and not get sick. You were old enough to understand basic concepts. You had always seen me give myself shots so you didn't think that much of it I don't think. If you did, you never let me know it.

Although I think a pump is a wonderful way to manage a young child, I believe that every Type 1 at some point should be on shots for a few months to really learn the basics of management without a pump -- how to do it, how to figure stuff out without the pump to help you, things like that which you need to know. It's pretty amazing to talk to a room full of diabetics and see what they don't know. Just because you interact with a group of people on-line that are well-informed certainly doesn't mean that is the majority of the population, even the Type 1 population. What they don't know is amazing.

Many pediatricians will make newly diagnosed children be on shots for six months or a certain time period to learn these basics and that's not necessarily a bad thing, in my opinion. You need to know how to survive if you pump stops or whatever. But with a young child that is more to make the parents learn. So unless I was on a pump for a while already, putting you on a pump at diagnosis probably would not have been something I would have done. If I was on it already, I probably would have insisted because you were really too little to learn the info needed to be learned about shots yet and made you do shots later."

As far as her having a pump at diagnosis back in the late 50s, she relayed the following:

"I'm sure my mother would have chosen a pump as she was a great advocate for what was new and innovate for me, no matter what the cost.  If it was available, she got it for me."
(Thanks for sharing that, mom! Love you.)

To me, starting off on a pump at diagnosis just doesn't seem like the best idea. I personally prefer what I see as a way to allow a child or adult learn the ropes of diabetes and then have that option to later learn how "freeing" an insulin pump can be.

What do you think? I'd like to hear your thoughts, whether you be a Child With Diabetes Who Grew Up, an Adult Type 1, Type 2 who might not need a pump or injenction, or Parent of a CWD either grown up or not. No right or wrong anwer, just an interesting point to discuss and see what more in the DOC think about this topic! Thanks!