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.

Here is another one of those iamtheworstbloggereveritsbeenforeverandileftyouallwithacliffhangerohmygod posts. Now that we have that over with . . .

Appointment update. I saw the doctor on Monday. My iron is way lower than it should be, so I am supplementing with essentially as much as my body can tolerate [which is essentially the nice way of saying: take as much as you can because this is not good, a nutritional re-vamp is not enough alone, lady. Fine then. At least chocolate milk has iron in it?]

As for the thyroid, my TSH [thyroid stimulating hormone] is borderline high. So when we go re-test the iron in August, we will re-test the thyroid. Essentially, and it is kind of confusing, high TSH = lower thyroid hormone production; low TSH = high thyroid hormone production. So there you go.] The short story is that while I do not fully have hypothyroidism yet, however, it could go either way: best case, it corrects itself [this is what the internet tells me might happen, so I am not overly optimistic], otherwise, my thyroid hormone production will keep dropping, therefore my TSH will keep going up, and I will have hypothyroidism. So it is the game of wait-and-see, which kind of sucks more than just getting the diagnosis over with.

School update. So alongside this, I am also failing anatomy. I’ve been doing twice-weekly tutoring sessions with my friend/now-coworker Danielle and making flash cards and filling out charts, and all that supposed goodness. There is just so much stuff to remember, and this class is hard. I have five days left, so fingers crossed I make it through this and don’t have to repeat come Fall. I filled out eight pages of muscle charts today, and there is more to come, plus a tutoring session tomorrow. I am so close, but so far from being close enough. I’ve had so many of these close calls with dumb classes this year, like Principles of Coaching, but this is by far the closest aside from Intro Kinesiology where I failed pretty hard early on and then pulled myself up to a B. So there is hope to pass, but I’m just riding it out and not holding my breath on anything. i’m working hard, but it’s just nerve-wracking to have 50% of my grade riding on a 27-hour span of time. Three. More. Days.

Also thanks to studying, I’ve eaten like a third of a pan of rice krispy cake today [my mom put chocolate chips in it. Who can resist chocolate chips?]. And likewise have gotten no exercise.

QUEBEC. The Asthma Society of Canada booked my flight to Quebec City for August. I am so amped. Except I need to probably learn some French beforehand. it’s going to be a whirlwind trip, as I will be in-and-out of Quebec City in 33 hours and back home in just over 40. Or something. [I’m bad at math at the best of times and it’s currently 12:10 AM.]

Race training. And, another exciting bit! As soon as this exam is over, I’m kicking up the training for the Canadian Diabetes Association 10K walk in September! Wanna support me in the race and support Canadians living with diabetes? Hit up my fundraising page! Live in my area and want to race with us? Shoot me an e-mail.  I’ve got hopes to get “team” shirts made, and hopes to rock a blue tutu on race day!  With props to Jay, we’re going to be called Good Things Run on Insulin, and it’s going to kick ass.

Speaking of kicking ass . . . This is me on Friday. Rocking my You Can Do This Project t-shirt, kids’ scarves [one of which happened to be blue for Blue Friday ;)] and my sweet new ID necklace from Lauren’s Hope! :] [To follow up on a previous entry, I am not continuing my MedicAlert membership after August. They offered to decrease my membership fee from $5 to $4 a month, but why should I when that doesn’t help anybody but me? i’ll be rocking my cool Lauren’s Hope ID, hunting down an epic interchangable bracelet, and sporting some Road IDs [I can get multiple Road IDs for the same price as a MedicAlert sportband. Boooom!]  Anyway, oh my goodness, look how kick ass this necklace is!

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I’ve been blessed with being able to meet a lot of really cool people, connect with a lot more, and be presented with a lot of really amazing opportunities.  At the end of December, I declared 2012 as the year of Good Things, and whether it is actually happening or it is just perspective [which IS still actually happening]. For instance, Ari Shine and Josh Damigo follow me on Twitter, and that is pretty awesome, because they are kickass musicians working super hard at what they do. I only mention this, because it is the pure connecting power of the Internet that has helped me land in a lot of places.

A few months ago, I haphazardly filled out an application to attend the Medicine-X conference at Stanford Medical School in Palo Alto, California, on recommendation of a Twitter follower who had attended Med-X in the past. Haphazardly because, thank you academic writing, I can make myself sound decent without trying too hard. And then, mostly I forgot about it assuming that nothing would come of it.

Last week, I received an e-mail that I had been selected to receive a full ePatient scholarship to Med-X including accommodation. Soon enough, the tweets started flying from others I follow with links of those of us selected for scholarships to the conference. In the Patient Engagement track, I am one of two Canadians, which is a huge honour in itself. Not only that, but to be alongside my friends Kim of Texting My Pancreas and Cherise, founder of Diabetes Social Media Advocacy or #dsma. These ladies are amazing people and hardcore influencers in the diabetes online community, so to be among them is amazing. We immediately started throwing tweets, direct messages and Facebook messages at one another.

Once the initial excitement wore off slightly, I started thinking rationally. School, money. Scouring the internet for the cheapest flights I could find with missing the least school possible. How I could get from San Francisco International Airport to the hotel, and how much it would cost.  Dude, I’ve never travelled by myself before . . . never mind in a place where my phone won’t work. Anyway, airfare had me scratching out numbers on a post-it. $550 is not bad for airfare going from the middle of one country to the coast of another in the least. But people, I work eight hours a week, sometimes a few more. I’m a full-time student. You know, the usual cards us students have to play.

I thought for days. I thought about making it work, about parting with probably what would end up being close to $1,000 for a three-day sprint of a trip. And I gave up on the idea, e-mailed the organizers of Med-X and reluctantly declined my scholarship. I Facebooked Kim and Cherise, Dia [who is basically my rationalizer] and Steve [one of my buddies in the Bay Area], and told them I was probably out.

Then at about 2 PM today my email bing’ed and there was a message from Larry Chu. Who offered an up-to $300 reimbursement toward my travel expenses to help enable me to attend Med-X. And my jaw dropped. I am already receiving conference registration, which is like $500, and a shared room at the Sheraton . . . and now they were offering to help offset the costs of traveling to the conference. This is a huge opportunity, and I’ve never done anything like this before. To attend Med-X with Kim, and hopefully Cherise, would be amazing.

I have another twenty-four hours or so to continue the considerations and make the decision. The Good Things, though, they keep coming, and I feel like how can I turn this opportunity down? Because it’s all aligning so amazingly–with so much of the cost being covered, with Cherise and Kim being on the roster, too, and with the haphazardity that I filled out the application, I feel that this must be aligning for a reason.

And how can I say no to the Good Things, right?

To be continued . . .

Regina. Saskatoon. North Battleford. Lamont. Edmonton.

GO.

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Saskatoon, SK – as much as we make fun of you, Saskatchewan, you are beautiful.

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Saskatoon, SK – Vimy Memorial. And a grammar fail. May be, Saskatoon. May be.

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North Battleford, SK. Pretty if not for the litter beside the train track, there.

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In North Battleford we stayed at the “only full service hotel”. It had water slides. It was kind of creepy in the fact that at about 11 PM our deadbolt that we found previously not working clicked closed and we were half locked into our room so we could not use the pool.  Also the room was really hot and the thermostat didn’t work properly and they had to bring us a fan. Also I think there was us and one other family staying in the only hotel.

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Lamont, AB. “Sitting in a city that will never let me go, what if I’m only satisfied when I’m at home? What’ll I do if you never find me again, sitting in a province a million miles from my friends?” –Edmonton, The Rural Alberta Advantage.

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If I look sleepy, it’s because I’m sure I just woke up here. One of many times.

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Edmonton, AB. The Best Western is a great place. They flipping sanitize the remote!

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Fuss Cupcakes on Whyte Avenue. Best cupcakes I’ve ever had. The top two are big ones, the purple one in my hand is a little one.

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I met Elisa at church in 2010. Since then she’s moved back to her hometown in BC and then to Edmonton. I was so stoked able to catch up with her for an hour or so over ice cream. I miss this lady, she is amazing and is such a beautiful person.

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The kinesiologist in me was greatly amused by this. And is also sure that this dude is on steroids. And not the good anti-inflammatory kind.

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I BBM’ed my boss this picture and she has agreed that we need a sea lion for a pet at work.

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Tonight we met my great aunt and uncle for dinner/drinks at The Rink Sports Bar/Grill in St. Albert, AB. Which we discovered is now only named after Randy Ferbey, the curler, and not actually owned by him anymore. We then went over to their house, where I spent a few days last year. They are awesome, and as frequently discovered, sport [hockey] was the great equalizer.

Tomorrow we’re off to Calgary bright and early . . . and Thursday I get to meet up with my long-time social media friend Danielle!

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Teleportation. Christina at Mom of 2 Type 1s actually blogged about it this morning. And I guess I am still in that college stage she was in where teleportation would be the most badass thing ever.

Without the online health community, I probably wouldn’t really care about having the ability to teleport. Don’t get me wrong, I love to travel, and I would love to take those steps out of travelling. Just think, if I were able to teleport, I would be able to not even pack, not pay for hotels, and travel the world for a couple hours at a time then pop back home to go to bed! But without the online health community, all of you who have because of the internet become my amazing friends, I wouldn’t even care. Travelling would be cool, but I like the people the best.  I like the memories of meeting up with Rona, of meeting up with Dia when she was here. Of the thought I’ll probably get to hang out with Danielle for a bit in a few weeks when I’m in her city, and hopefully have a #KerriPower meet up in May when Kerri is in the city.

This . . . to be able to have these random meet-ups all the time would be awesome. To be able to see, face-to-face, the people who understand you the best, not only because they share your health condition, but they understand the ins and outs of it, and how it actually intertwines with your life. . . would be amazing. To be able to suddenly pop up and see Natasha or Elisheva [or any of my overseas friends] all the way across the ocean whenever we felt like it, whenever someone needed some rant-time or just to hang out, would be so awesome.

So teleporting? I would be all over that.  Meet-ups EVERYWHERE!

[Or, if not teleportation, I will totally accept an airline sponsor if I have any takers. AirCanada? WestJet? I can give you my whole pitch about the power of community and supporting people with chronic disease through education, empowerment, physical activity and relationship-building!]