As a person without diabetes who has many friends who live with diabetes, I see a lot of what goes on in the diabetes online community from a slightly different vantage point. On Saturday night, I was talking with my friend Alex about art. Alex has diabetes, and I mentioned Diabetes Art Day to him in this conversation. The tables turned, though, and he ended up encouraging me to participate in D Art Day.

So, I busted out the 60-whatever pencil crayons I bought to make anatomy a bit more enjoyable . . . and for an hour and fifteen minutes, created this:

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I’ve only seen it from the outside, but this is still only partly what I’ve seen. I’ve seen people moving from darkness into light in their lives with diabetes. I’ve seen connections being made, and I’ve been involved in them. I’ve seen people taking ownership of their diabetes. I’ve read stories of the triumphs, the tribulations, the highs and lows. I’ve felt pride in my country for the scientists from Toronto who discovered how to use insulin to keep people with diabetes alive. I’ve seen love and compassion, encouragement and movement, advocacy and community. I’ve seen so much more.

But mostly, I’ve seen love. And I’ve seen hope.

Jeff Neitzel and I connected on Twitter within the last couple of months. Jeff and I have a shared love for taking our chronic disease journeys as they come and maintaining a [perhaps sometimes annoyingly-so] positive perspective on life with invisible illness. Most times when you ask Jeff how he is doing, the answer is atypical but one I love: “Shiny” :] (He’s also taken to my use of square bracket smileys, which makes me smile!).

Jeff graciously agreed to write a blog post about some defining moments in his Type 1 diabetes journey, and I am thankful for his willingness to share candidly some defining points from the travel map behind him in his type 1 diabetes journey of 28 years . . . and counting!

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Thank you very much, Kerri.  Your asking me to write this has helped me rediscover valuable memories that I might have otherwise forgotten.  I’m truly grateful.

Intro

For the record, I was diagnosed with Type 1 Diabetes on Tuesday, March 6, 1984 in Mooresville, IN, USA.  I was 13 years old at the time.  Fortunately, I have an older sister who diagnosed years before. So, my mother and I knew what was going on before we ever went to the doctor on that particular Tuesday.  If I may, let me tell you that I am a lucky man.  I doubt I’d be where I am today without the help of so many great people over the years.

My diabetes is a friend who has given me a lot over the years.  I truly count it as a blessing in disguise.  See, my diabetes and I are on a journey together.  In many ways, this is a journey without a predefined destination.  It is a journey of empowerment, hope, and love.

I guess you could say…  It’s not so much about the where I go but how I choose to get there.  The journey itself is the destination.  Are we there yet?  No, not yet.

Michigan

Now, I’ve said it before…  My diabetes life has been nothing short of a whirlwind.  The memories I have of my early diabetes days are pretty vague.  There are those events that are unforgettable though.  Here is one of them.

The only diabetes camps I remember going to were bicycle trip camps that were organized (in part) by Sam, my diabetes doctor.  They were both trips around Michigan with a ride across the Mackinac Bridge and a break day at Mackinac Island on one of them.

The riding and camping during these days was exciting, fun, and full of learning.  To this day, I still remember my most important take away from all this–and that is . . .

Don’t hide your diabetes.  It doesn’t have to be invisible.  Be proud of it because it’s part of you.  The visual take away in my mind is symbolized by all of us outside a shop on Mackinac Island checking our blood sugars, taking our shots, and all that other fun diabetes stuff.  Yes, people could see this bunch of kids with diabetes doing our thing and having fun while doing it.  Unfortunately, I don’t have any photos of this.  Alas, it is still a vivid and important point of diabetes empowerment for me.  I’ll carry it with me always.

Indiana and College

I don’t want to bore anybody with details of my first go at college stuff.  So, let’s just say that it was an interesting challenge not just for me but for my family as well.

There are a couple tidbits that are worth sharing in any case.  One is…  I wouldn’t recommend getting low in public, in your residence, or in your class(es).  My mom and my doctor had to make the college see the light on one occasion to stop them from kicking me out for getting low.

The other is…  In retrospect, I know now that I was dealing with depression at the moment in time when I jumped off the college ship.  See, I had a revelation back then that I wasn’t going to be around forever.  Rather than learning about the world from books, I decided it was time to leave and forge my own path in the world by just doing it.

It probably wasn’t the best decision in the grand scheme of things, but it was required for me at the time.  I’m a better person for it today.

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Boston and Beyond

Now, college was worthwhile for sure.  I’d return to complete my degree eventually.

My Boston years (from about 1994 to 2000) though…  They changed me absolutely in more ways than I can possibly convey here now.  Without going into the day-to-day of my life in Boston or the work I did there, I will say that it centering myself around this amazing city is one of the best decisions I’ve made in my life (to date that is).

The thing that was/is most valuable to me about Boston is the amazing friends I made while I was there.  Even though I’ve lost contact with many of them, there are a few people I still know from those days.

For the most part, Boston served as a jumping off point for my travelling via train, plane, bus, and bicycle.  This included trips to various parts of Europe, to Canada, and across the USA on at least two different occasions.


JANeitzel1-AmtrakDerail.jpgOne example I’d like to share is one of a train derailment.  Having ridden my bicycle from Boston, MA to Albany, NY (summer 1994), I then caught the Lake Shore Limited bound for Chicago.  Long story short, the train derailed near Batavia, NY on the way to Buffalo.  102 people were injured, but I wasn’t one of them.  Regardless, this was just another example to me of why it is so important to appreciate what we have in this world.  I’m not talking about material possessions either. I mean the power of the connections among people. I met so many fascinating people that day. People who were different from me but like me.  Knowing that we are all connected in one way or another despite our differences is so important to me.  That day just illustrated in a very powerful way.

So, where was diabetes during these travels?  It was right there with me every step of the way.  This whole span of my life was about much more than diabetes though.  It was about my love of people, geography, and cities.  Diabetes was there as my companion, not always the most cooperative companion mind you.  Still, diabetes made and still makes my adventure more fulfilling in more ways than I know how to say.

It simply allows me to appreciate more than I might otherwise be willing to appreciate if you get my meaning.  Things are just shinier for me when they’re good.  It’s the blessing in disguise thing ya know.

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In my mind, it’s all about the journey and connecting the dots of my life with those of others.  So far, I’ve gone from Indiana to Boston, Beyond, and back again.  I’m not there yet.  Diabetes will not stop me.  So, my journey continues.

Diabetes is a journey with many facets.  Those facets include the mental, the physical, and the spiritual for me.  It is a difficult journey for sure, and I’m not always so shiny.  That said, we (my diabetes and I) try to get up every single day and embrace the imperfection of it all.  Sure, we fail sometimes.  That’s life though in my estimation.

Anyway, we choose to keep on moving…  Are we there yet?  No, not yet.

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Jeff blogs at Betespora, an engaging chronicle of his “D-Quest”, reflections and some philosophizing thrown in for good measure–I can’t speak for others, but in my journey reading back, it constantly challenged me to question myself and my world . . . and DO something good! I haven’t been following Jeff’s blog for long, but it quickly became among my favourites out there.

Jeff has a degree in Information Systems and has special interest in Open Source programming working [and speaking in what I am convinced is a foreign language!] on the v6shell project :]. Jeff can also be found on Twitter at @betespora and @v6shell.

A question that gets thrown around frequently in the Diabetes Online Community [or DOC] is that of “What does a low blood sugar feel like?” My friend Jamie lives in the Toronto area, and has been living with type 1 diabetes for over twenty years. Jamie is also on the Chronic Roadtrip planning team, and we have had several amazing Skype and Twitter conversations on advocacy. Today, I’m thankful to have Jamie here sharing another bit of her creative diabetes advocacy (like her whiteboard at work, which I love!) as she shares yet another perspective on living with an invisible illness with a creatively written post! Thanks Jamie!

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You sit next to her on the train every day. She is a lovely woman who chats about her day, and you chat about yours.

She shares her hopes for a promotion. She talks about the sweater she almost bought but couldn’t bear to pay an outrageous fortune for it. She complains about the fight she had with her cell phone provider. She listens to you as you banter on about your workday.

Then she falls silent. She opens her purse and rummages through it. You close your eyes – it’s been a long day.

Then you feel a tap on your knee. You open your eyes and she’s looking a little flushed, and asks you if you happen to have any candy. You do, and hand her a crumpled bag of Skittles that has been lurking in the bottom of your purse. She looks relieved. She tears open the bag and eats them, then leans back in her seat and closes her eyes.

After some time passes, she perks up again and continues her banter about her daughter’s new job, and about the fact that her vacation is only “5 more sleeps”.

Pretty normal stuff. Right?

What you don’t hear is her internal conversation. To outsiders it would sound like a foreign language. It is a stream of consciousness, a constant underlying hum in her brain.

Am I high? No, it’s a low. Crap. Did remember to I stick my kit in my purse before I left? I don’t know. Can’t remember. I did. Ok. Test. Why do they make those stupid strips so tiny and they stick together. Did I bolus too much for that cookie? It was 3 hours after I had lunch. Maybe it was too soon to bolus. My pump said I didn’t have any IOB. Crap. I feel low – 3.1. Crap. I AM low. Where are my lifesavers? Stupid me. Stupid black hole in my purse. Why won’t my fingers work? Maybe she’s got something. She’s sleeping! Should I wake her? I’m soooo hot. Why don’t they turn on the air conditioning in here? I don’t know. YES!! Just tap her on the knee. She won’t mind, right? Thank goodness. Thank you! I wish I had a drink. I HATE cottonmouth.

This is the face of a person with Type 1 diabetes (aka Juvenile Diabetes, Diabetes Mellitus). This is the face of an invisible illness.

Type 1 diabetes requires constant management and frequent interaction. Blood sugar needs to be tested 8-10 times a day – sometimes more. Many inject insulin several times a day. Others use insulin pumps which pump insulin constantly, but it doesn’t end there. No matter which method, people with diabetes must count carbs for everything they eat, and get it right. They must add (or bolus) extra insulin – and get it right, for even a small error can cause a “low” or “high” blood sugar which must be dealt with by adding more insulin when blood sugars are higher than they should be, or have some “fast sugar” to counteract a low, which can lead to many physical symptoms – anything from sweating, confusion and even loss of consciousness.

These are some of the immediate issues that must be considered before any worries about complications we’ve all heard about, like kidney failure or blindness. Of course, people with diabetes worry about these things too, but it is so much more than that. The management is constant. The worrying is constant. The inside monologue is constant.

There are no breaks. The internal conversation does not rest. This is the hidden illness of diabetes.

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Jamie lives with her husband Larry, and is an advocate for both diabetes and accessibility awareness. In addition to three kitties and a dog, a member of the “furball” part of Jamie and Larry’s family is Keeta, Larry’s guide dog–accessibility for people who are blind is a big part of what Jamie advocates for!  Jamie enjoys reading blogs and collecting stories in InkStain’D, . You can find Jamie on twitter at @InkStain_D and her blog at Flying Furballs!

Over the last few years, I have made friends with too many people who live with diabetes to count them all. These people have become my friends, both online and in real life [and some currently online and ABOUT to become real life friends!] and through Twitter and their blogs, I get a small glimpse into their worlds of living and thriving with a variety of types of diabetes. When I was searching for a Fall race to do, the Run for Diabetes in support of the Canadian Diabetes Association grabbed my attention and didn’t let go. Thanks to my generous friends who helped me not only raise but shatter my fundraising goal, and thank you to anybody who has supported me in the physical activity endeavours in the past couple months!  With tribute to Jay, we unofficially called our team “Good Things Run on Insulin!” and got to throw the phrase around and tell the story to a couple people today, which was super awesome.

My friends Sam, Danielle and Julia joined me today, and they were so much fun to race with. We got up at 6 AM (can you say early? I work at 10 AM tomorrow and 7:30 AM for the rest of the term, and my body is going to have no idea what to do with getting up at that hour), got ready, and drove across the city to the beautiful park where the D-run was being held. We preceded the race by visiting the bulk of the booths set up, where the people from Virgin Radio gave us free shirts, and tweeted and facebooked about us (this was the first time I told the Good Things Run on Insulin story!)

Love the tutus and the t-shirts – its team Good Things Run On Insulin! 

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Left to right: Sam, me, Julia and Danielle

Photo Credit to Virgin Radio

YES!

The actual race got rolling a bit late, and in the time we were waiting, literally seven people asked for pictures with us and our tutus. It was a little crazy (stay tuned for those, I know the Diabetes Association has a couple, as do the pharmacy people, as does the Manitoba Runners Association).

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Come on guys, I’m ready to go over here!

Finally, after a lengthy walk to the starting mat, and some sort of siren-esque interlude as the gun, we were off!

Being a walker in a race is awesome, but awkward. People cheer you on, but all the runners run past you all the time, and the half-marathoners have triple-lapped you, and et cetera. Also all the runners are super hardcore, obviously. Here’s some footage of the race, except minus the parts where we had to say thank-you four hundred times when people commented on the tutus. It’s super short, because video-ing is kind of distracting from the task at hand and such.

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You can’t see all the names, but you can clearly see that there are way, way too many people in my world who have diabetes.

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My first chip-timed race! Results TBA!

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How could you not want to walk in this? [Running Room! Want to make a deal and you can use this?]

Hmm… maybe the view literally took my breath away and it wasn’t asthma? 😉

Aside from some of the usual muscle-related off and on pain, my legs were totally awesome this race (and they’d be good now if I hadn’t stopped moving!). My lungs, on the other hand, were just true to the pattern that’s developed. I tried a new plan of attack on this walk, and it mostly worked until the last couple kilometers, and I was still able to amp up a run across the finish line at the end!  Today’s plan involved a neb treatment (a bit less than a 5mg vial of Ventolin–I got sick of doing the treatment, okay?) at 6 AM, the usual meds with an increased Symbicort dose to 2 puffs instead of 1 (I upped the Qvar to 3 puffs instead of 2 a couple days ago). Then, two-plus (with the delay) hours later I took two puffs of Ventolin from the inhaler.  Since my asthma is the most trouble after an hour, or 5.5K-ish, I took two more puffs of Ventolin and two of Atrovent early into the second lap. The pattern of the last longer walk held true, and over the rest of the second half, I think I averaged 1 puff of Ventolin per kilometer, but I didn’t start feeling really short of breath until we started kilometer 8, which was good! I need to stop trying to make sense of this exercise induced asthma pattern, but I really want to understand it so I can treat it better! (Really, I am doing all I can be, which sucks) I really feel that it’s taking me an excessive amount of Ventolin to get through these longer workouts, and I am not super okay with that. To prevent any rebound-flares later on today and to quell the dyspnea already developing, I did another neb when I got home. (The night of my first 10K, I had a really hard time breathing and if it wouldn’t have been for having access to a nebulizer at home, I would have had to go to the ER. Crossing my fingers that I don’t have a repeat of two years ago!)

I had Gatorade at the first station (which I after realized was stupid because why the hell would I need Gatorade by the first stop) but it was also way too strong. I stuck with water for the next few (because cold water > the water from my bottle), threw back a few sips of Gatorade (which Julia described as Mr. Clean. Thanks, Julia ;)) and ditched over half of that one, and stuck to the gross water bottle the rest of the race. I tried the homemade gel at about 7.5K, I think. It worked really well, but it was just too freaking sweet. My pre-race nutrition was also crap, because it involved exactly two bites of some random protein bar that came in the race kit, and about four sips of some almond milk smoothie thing (complete with a carb count on the table! 11g per serving, y’all! I was actually surprised that was the only carb count sign I saw, considering Good Things Run on Insulin and all).

Finally we rounded into kilometer 9, where my friends refused to leave me to go run the last kilometre (I told them to go because I knew pushing myself any harder would be no bueno, but they’re just awesome and told me that we were all finishing together). Halfway through the crowd of people, we kicked into a sprint to the finish line about two-hours after we started, where were unceremoniously handed our medals over (there’s something about when they put the medal around your neck, you know?) to put on ourselves.

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Post race

We walked around for a bit, because when you stop moving is when you start to hurt. A guy gave us funeral home branded water (like “Good health choice doing that race! Now, time to think about when you die! Ouch?) Found the bathroom that had no line by the point we crossed the finish line (it had a huge line pre-race because the porta-potties were still being put up, so we stood around until the Gotta Go guy was gotta gone. Also we had nothing better to do but stand there and dance, really–I’m sure even with the dancing we stood around less time than if we’d have waited in the bathroom line).

Subway had a booth with free sandwiches and yogurt parfaits, so we went and ate free food and sat on a bench overlooking a similar view to this, where Julia ran away from wasps while we had snacks and then headed for home!

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I was happy to be a small part of making a difference today. With charity races, the making a difference is two-fold: the difference in yourself in not only working to keep your body healthy through training and racing, but in your thoughts in how you perceive the good things that these non-profits are doing for people, AND in bringing much-needed funds and support to these organizations that do so much to help ALL of us live the best possible life we can have! I can go out there and have all the fun I want, but it’s not as meaningful if I’m the only one benefiting from it. Just as a Canadian discovered insulin, my hope is that Canada can be an equally big part in finding a cure–and supporting those living and thriving with diabetes while they wait.

In case you missed it, an update to “A moment changes everything”: Jay’s Story was posted on Monday, so please check in to see how Jay is doing after his first year of living with diabetes!

As I articulated in the preface and post-script to that post, I am honoured to be able to share people’s stories of how they live, adjust and thrive with chronic disease. Jay and I have had many, many awesome conversations on the topic via e-mail before and after this post went live in January, and I am still blessed that he and all of the other guest bloggers who have shared their stories here, chose to take that step and share insight to their worlds.  To Jay and everybody else who has chosen to share their stories in this space: THANK YOU!