diabetes art day 2012: hope.

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.

in the neighbourhood: come visit me at respiratory learning!

RT actually stands for Rockstar Therapist–and other respiratory therapy lessons from a badassmatic’s perspective

Come visit me at the Respiratory Learning blog!  Jessica graciously asked me to share some patient perspective in her community of Respiratory Therapists and RT students, and it is a total honour to be able to share my story to the people in this amazing profession.  Thanks Jessica!

just when i thought i had it figured out . . . expecting the unexpected.

I intended to write a post on Friday to wrap-up Invisible Illness Week. Actually, I have one almost done, but I’ll save it for another time. Instead here are some late-to-the-party ramblings about my asthma. I just want to give another huge THANK YOU to my friends who guest blogged for Invisible Illness Week 2012, and extend my thanks and love for each of these people once more for sharing their stories. :]

I’ve had asthma for four and a half years, and I’ve figured just about everything out.

I’ve figured out that I need to take more than two puffs of Ventolin before working out. I’ve figured out that anything more than a 50-minute-long workout will usually require a shitload of Ventolin, even if I pre-neb. I’ve figured out that I don’t have many allergies [except for dust], and I’ve figured out that no matter how hard I try, I’m not able to mitigate everything, and I’ve figured out that some days I still do need to tell myself: Hey, you do have this chronic disease, and you do need to do things differently from other people sometimes.

So, usually I DO have everything pretty much figured out.

Until something new pops up.

ONE, last Tuesday, somebody busted out the grapefruit-scented hand lotion on the bus. I don’t react well to fragrances, and that extends outside of my lungs (I love Fall, but my fragrance exposure goes up a fair bit when it comes). For some reason, scents like grapefruit or other citrus-y things are the worst. This time, fortunately, I didn’t get a headache like I usually do, but my lungs definitely reacted a bit, and, the most unexpected part was the fact that my face and eyes started burning. Definitely some new sensations, and definitely not good ones, so I’ll be keeping an eye on that. It sounds like an allergic reaction, but the good news is, unless to a specific protein in the fragrance itself, actual allergies to fragrances aren’t common at all. So, unfortunately, I have no idea.

So what the deal with that was, I have absolutely no idea. My face was kind of itchy for the rest of the day, but of course I didn’t do anything smart like take an antihistamine.

TWO just happened. I have no idea what the deal was, but right after dinner I had this really sudden-onset coughing spasm that lasted for way longer than I am used to. At the end of it, my peak flow was normal though I was feeling some tightness/dyspnea, but fifteen minutes later, it had dropped into the “yellow zone” [basically saying my lungs are not in good shape]. I am not betting the two are connected, but they both have me a little concerned, so I’ll be keeping an eye on that.  Four puffs of Ventolin (two and two spaced about twenty minutes apart) later and I am much better but not awesome [I was having a really good breathing day prior to this, so I am REALLY unsure where that came from].

The September Asthma Peak happens right around back-to-school time in September.  As the name says, asthma symptoms, hospitalizations and ER visits spike around this time of year, especially in children–the phenomenon extends outward, however, and may not-children are affected, also. Once again, things I need to keep an eye on–and, maybe stop putting off that follow-up appointment with the allergist? :]

Also asthma related, look what happened to my ID bracelet! Jon from MyIdentityDoctor is shipping me out a new one tomorrow, but we’re a little concerned it won’t make it to me by the time I leave for California next Thursday for Medicine-X. Note that Jon said that this should not happen and my bracelet is under warranty as it isn’t even two months old yet.

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I have my RoadID to wear in the meantime, but it’s a little less than professional, so tomorrow I’m on the hunt to get a new bracelet locally that can fit all my stuff on it since I don’t have time to wait. While I wish this would have happened a week or two ago, I’m happy it didn’t happen, you know, the day before I left. My friend Amy gave me a few suggestions where to check, so that will be happening tomorrow after school.

Otherwiiiise, the back-to-school season is going okay so far. I was really looking forward to Developmental Psychology and it is currently boring my brains out [as is Charles Darwin, who I was also looking forward to], which is unfortunate. Anatomy is I think even more boring the second time around, but hopefully I retain more the second round since I am knowing a good chunk of the content we’re covering thus far. Social Psychology is my favourite class. That and considering I dropped the rhetoric class I was in, there is a significant lacking in #kinwin in my term, and I am not a fan of that [unless I get my four-year kinese degree, after this year I will only have ONE kin class to go to get my BA, which is physiology. If I do the four-year, I’ll have to also take biomechanics, exercise phys, motor learning and control and some sort of elective like sport psych or outdoor ed or something–a fun elective! I’ve determined a big bulk of my problem with these psychology classes is that I am struggling to be able to apply these things [I can’t. I can’t make Eleanor Gibson’s Visual Cliff Study relevant in my own life except for the relevance of passing the test]. So, there is a huge shift in mindset that I have been struggling to make academically the past week and a half. I determined what the issue was on Thursday, so hopefully I get with it. I’ve actually been keeping fairly well caught up with things [except freaking Darwin. That guy uses too many words to say what he could say in less words]. So, studying is going well for once [WHAT?] and I actually managed to accomplish a fair amount of non-school writing projects this weekend, too. Possibly should have been reading Darwin, but whatever.]

On the note of making things relevant in my own life, tomorrow [pending this respiratory situation is resolved] is go time on making exercise part of the new school routine. I did okay the first half-week of school, but then I derailed last week. Let’s go week three!

“a journey of empowerment, hope and love.” – jeff’s story on type 1 diabetes

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.

JANeitzel3-CyclopsBoy.jpgConclusion

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.