Though he has never, to my recollection, asked how I found him, my cousin Dean is in a math class with an interesting twist.  It has a hashtag, thus making tweeting through class permissible.

I may not really know my multiplication tables, or remember anything about trigonometry, or be able to correctly execute the order of operations reliably. But I know that in-class tweeting is something that I quite dig, as evidenced by my own Twitter feed.

Bryan Penfound is the instructor who brought math and Twitter together at my university (and the other night posted about what it would look like if a person fell into a volcano).  I may not like math, but in the last week or so engaging with Bryan on Twitter has been super fun.  He agreed to share some thoughts on using Twitter in higher education here today, and with that, I will let him introduce himself!

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Bryan ziplining.
Hi Bryan! How are you?
I am excellent. Just played a decent round of DDR so I’m focused and ready to go! What about your day so far?
Fantastic! I’m doing well, thanks! Care to tell us a bit about yourself?
Aside from being an avid gamer, I enjoy teaching mathematics now and then. I currently teach for the math department at the University of Winnipeg, and for the International College of Manitoba. When it comes to my background in mathematics, I received my B.Sc. from Brock University in St. Catharines, Ontario, and my M.Sc. from the University of Manitoba. I have been teaching at the instructor level for about 4 years.Aside from my first and second true loves (Yes, I am taken – sorry readers! Although I will let you decide if mathematics comes first or second! :P), I have an interest in insects, yoga, chocolate-covered anything, puppies and Starbucks. I dislike drivers who don’t know how to merge properly, that feeling of sand drying to your skin after swimming, mosquito bites, people who don’t know the difference between “your” and “you’re” and waiting in line.
Okay, the Starbucks and the differentiation between you’re/your have it sealed why we click! Back to the beginning, what got you engaged in Twitter, and what were your first thoughts?
Well, I never really used Twitter that much at first. I just used it to follow my idols, like Justin Bieber. But then getting all of their updates was a little annoying, and I felt that I could never have as many fan-girls as them on Twitter, so I stopped using for a quite some time. Then when I bought my smartphone last fall, the Twitter app got me back in business.
It seems like many people have a first aversion to Twitter following sign up–I know I had one!  I’m happy you got back on board.  What sparked your choice to integrate Twitter into your classes?
I have been searching for the right social media to use for class updates for some time. A couple of years ago I used a Facebook page to keep my students updated, but it wasn’t quite what I was looking for. If I had been teaching multiple courses this would have meant multiple pages for multiple courses.As I was designing my course website over the winter break, I realized there was a Twitter widget to display tweets, and I was sold. It snowballed from there to include a live twitter feed projected during class time as well.
Very cool! How do you feel it works?
By far, Twitter is the best social media I have ever used for keeping my class updated with course announcements. Many students either had Twitter, or signed up for Twitter once they realized they were able to tweet during class. Having a running hashtag #math2106 and #math1102 (check ’em out) is both easy and effective. Perhaps I should take a few lines to explain the premise of Twitter for those who don’t know. Users, once registered, will have access to a main page. In this main page you can view all the tweets from anybody you are following. So if my students follow me, their class updates come to their main page and are easily viewed. Another neat aspect of Twitter is that conversations can also include “hashtags” (#) which effectively sew a bunch of tweets together that contain the same hashtag. By clicking a hashtag, one can view all the previous tweets containing that hashtag. For instance, if you search the #math2106 hashtag, you will see tweets from my Intermediate Calculus class.One of the best parts of the whole set-up is that students don’t need a Twitter account to keep updated in my course. Students can click the hashtag related to their course and they are sent to that page with all of the tweets containing the hashtag – and this page includes all of my updates! So students can choose to check out the updates at any time they wish.
I feel like the constant real-time aspect of Twitter really helps with engagement, but also in the fact that you can go back over certain information at a later point–I would love tweeted reminders about things, since I have the tendency to throw reminders amongst my notes . . . possibly never to be seen again!
 
What kind of reactions have you had from your students about having to use Twitter for math class? :]
I knew it was going to be an interesting semester when the first tweet I got on the projector was “Should we get #math1102 trending?” Thank you to Ian G. for that one. My upper-year students were even more excited than the first-years – believe it or not! I did have some skeptical faces at the beginning of the semester, but with me portraying a positive attitude and with some help from a handful of tweeters in my classes, it has become a success. It has really opened the door for much more collaboration and discussion in math class, which is a subject that is usually not viewed in this way.
Proof to the power of positivity . . . in everything! I wondered the same thing myself when I heard your classes were on Twitter–how it would spark discussion/collaboration in a math class, as opposed to something arts-related which is typically fairly opinion-driven. So, to me, that’s totally an unexpected bonus of Twitter integration.
What is the most unexpected thing you’ve found when integrating social media and education?
Honestly, everything so far has been unexpected! I never expected to have an experience like the one I am having this term. Perhaps the most interesting aspect of using Twitter is the classroom display. Being able to tweet during class might make teachers believe that Twitter is a distraction. Let me be the first to say that it is an excellent distraction! Disclaimer: once you get your students started, they will not be afraid to speak their mind! They will let you know if the last example you gave was too difficult, or if it needs some more explanation. Too many tweets might mean the material is too easy, or way over their heads. Whatever the case, you, as a teacher, now have invaluable insight into the minds of your students.Of course, a live Twitter feed during class can lead to distracting comments. The odd student will find a great opportunity to make an hilarious comment. But it is never often enough to distract from the overall pace of the lecture. Personally, since I have long lectures, I tend to point out the witty comments so that the whole class can laugh and take a short mental break. Having one or two of these per lecture is nice and keeps everyone more focused. Also, I find it helps me build a stronger relationship with my class – if they see me engaging their tweets and being easy-going about it, they are more likely to feel comfortable approaching me if they are having any concerns in the course.
I think the hilarious comment avenue is just typical for discussion in any forum–I cannot tell you, especially in kinesiology, how many of these happen in my classes! I feel like a kin class with a hashtag would be pure madness, but I’d still love to see it happen.  Any advice to instructors looking to get started integrating social media, like Twitter, into their classes?
Start slowly. It is very easy to get excited about trying new methods of instruction, and jumping in head-first will wear you out quickly! Find one new item that you would like to try in a future class, and do some research. It took me several weeks to get used to the various symbols and ways to tweet. After that, it took me about a month to think about the best way to implement the social media. It is not enough just to use the media, there must be an underlying purpose too!
Do you engage in any higher education Twitter chats/hashtags or have any resources to recommend?
I don’t regularly get involved in higher education hashtags, although I do follow some of the educational Youtubers – Destin from Smarter Everyday, James Grime from Numberphile, Michael from Vsauce and ViHart to name a few. One of my twitter highlights this term was getting a retweet from Destin about his “decoy” spider from the Amazon (really cool if you like bugs – I own a tarantula, her name is Charlotte).
One resource that I am trying out this term is called TopHat Monocle. It is an alternative to the iClicker system, where students use their smartphone, tablet or laptop in class to submit answers to questions the instructor poses. I use the feedback I get from my students to spark classroom discussion about certain topics. It also lets the students see how they compare with the rest of the class. It definitely comes highly recommended from me.
I love that you have a tarantula named Charlotte! Can she come for coffee with us? (Would Starbucks think that is weird?). Also the name TopHat Monocle cracks me up every time I see it on your feed (I cannot recall if he wears a monocle, but it reminds me of the Monopoly man for some reason).
On the topic of random, since we seem to have veered over here unexpectedly thanks to that spider-segway . . . Thoughts on that random girl who always engages on your class’s hashtag? 😉 [“She doesn’t even go here!”]
I think it is awesome that you “tweet-bomb” my class! Sometimes all it takes is one person to get the Twitter feed going, and you definitely have a knack for that! Sadly, it also lead to the most embarrassing moment of the term so far when I had to admit that I forgot the Mean Girls quote “She doesn’t even go here!” and my students had to explain it to me…
It is amazing how many Mean Girls references happen in University classes [we had one in my Physical Activity Promotion and Adherence class last year!]. Truly an epic movie :). Off topic . . . but completely on the topic of Twitter, what’s your favourite Motion City Soundtrack song?
Definitely “Happy Anniversary” from their newest album Go. It’s pretty dark and peppy – exactly what I love in a song. It is about a couple, and from the point of view of one member of that couple who is dying and trying to say all the things he/she wants to say before going. It is also a bit ironic, since it probably isn’t a happy anniversary for the other person who has to deal with the death of their loved one… Definitely get the tissues.
Will have to check it out–I’m sure I’ll cry all over it :].  Dark and peppy is how I roll too.
Any final thoughts?
Just wanted to say thank you again for a cool opportunity to discuss social media and education! Anyone who is interested in more information from me, or who is interested in giving me some feedback/pointers can find me on Twitter: @pencentre I’m always ready to tweet.

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Thanks, Bryan!  Have I ever told you how rad your username is? I had a ton of fun with this . . . and look forward to continued Twitter-shenannigans with you in the near-future!

In September at Medicine-X, I was blessed with the opportunity to meet many ePatients who I’d been in contact with online over the years. One of these beautiful people was Carly, a Masters of Business Administration student from Virginia.  The coolest thing about meeting people “from the internet” in person for the first time is that it already feels like you know one another, you go in for that first hug, and then you talk and hit it off like you’ve known each other forever.  Carly also provided me a ton of support, even if she didn’t know it, throughout the whole respiratory situation/prednisone ordeal, because she knows first-hand just how miserable it can be.

Carly lives with Crohn’s disease, an inflammatory bowel condition that can wreak a lot of havoc on a person’s digestive system, with treatments that can ease but not cure symptom flare-ups at the cost of a lot of side effects throughout the rest of the body.  Today, she’ll be sharing a bit of what Crohn’s is, and how you can be supportive to a friend living with IBD.

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December 1 through 7 is Crohn’s and Colitis Awareness Week. Crohn’s disease and ulcerative colitis (UC) are the two diseases that are also referred to as IBD (inflammatory bowel disease). IBS (irritable bowel syndrome) is not the same as IBD and is in fact a different condition. Combined, 1.4 million Americans suffered from these diseases, although the numbers may be much higher because in some cases it can take years for individuals to be diagnosed. Crohn’s and UC are autoimmune diseases that generally attack the digestive system, although many patients have joint pain, depression, anxiety and other symptoms as well. Crohn’s disease can affect the entire digestive tract, from mouth to rectum, while UC affects the colon only. These diseases typically involve chronic inflammation of the intestine (or other digestive area) and can be very painful. The treatments range from steroids (commonly Prednisone) to newer biologics just as Humira or Remicade. Patients may undergo surgery to remove highly inflamed parts of their digestive system, or even their entire colon. Surgery is not a “cure” though and can present its own problems, such as an ostomy, nutrition problems, or fecal incontinence. Most people with IBD are diagnosed in their teens, but children and older adults can also develop the disease. There is currently no cure for Crohn’s or UC.

Carly

Do you know someone with IBD? Here are some tips for being a supportive friend:

  • Like many other autoimmune diseases, IBD can cause fatigue and pain. Your friend may need to cancel plans, often at the last minute. Be understanding and above all, don’t take it personally. Keep inviting her to events, she’ll hang out whenever possible.
  • People with IBD may have varying dietary needs. This can be different for each person and can change depending on how active their disease is at the moment. Don’t be offended if your friend doesn’t eat something you prepare. If you are inviting them over for dinner or out to eat, take an opportunity to ask gently if they have any preferences or foods they absolutely cannot have. Don’t assume that the diet they were on a year ago is the same one they are currently on. Don’t be offended if the friend doesn’t want to do an eating-based event, they may be on a liquid diet or IV-feedings to rest their intestines.
  • Your friend with IBD is probably on medication that compromises his immune system. If you, or someone in your household is sick please let your friend know before you hang out. They may choose to wait until you are no longer contagious. It can be much harder for people on immune-suppressing medication to fight off illness like the cold or a flu and they’ve probably used up all their sick leave on IBD-stuff anyway.
  • A person with IBD is a person first. If you knew your friend before they got sick, remember they are still the same person. They may be more depressed from time to time, but they still have the same general personality and interests. If your friend can’t make it out to the movies, maybe hang out with them at home and watch Netflix. If your friend isn’t up for a visit, be sure to send emails and texts to let them know what you’ve been up to. Your friend does not want to feel left out or like a person who is only a medical specimen.

 

For more information about IBD check out CCFA (http://online.ccfa.org/site/PageNavigator/AdvocacyPage.html) and Crohnology (http://crohnology.com/blog/5-crohns-colitis-awareness-week).

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Thanks Carly!

Carly is a graphic designer, student, health advocate, Medicine-X ePatient, and bunny lover. Throughout the week, she’ll be blogging about life with Crohn’s at ChroniCarly, so please check out her posts to explore more about what living with Crohn’s can really be like.  You can also find her on Twitter at @CarlyRM and @ChroniCarly.

Also, Carly . . . when are we going to Chicago? :]

Throughout November, the diabetes community has been up to serious Good Things advocacy-wise for Diabetes Awareness Month. Many of my favourite things are initiatives like the Big Blue Test or Connected in Motion‘s World Diabetes Day Scavenger Hunt, that help create awareness while getting people–with and without–diabetes active at the same time.

To close off the month, Allison Nimlos offered to share some of her thoughts about exercise and type one diabetes–and how, despite the ever-constant and ever-changing variables that come into play when managing exercise with diabetes, it is worth it to persevere.

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After 19 years of living with type 1 diabetes, there are two things I know for sure about diabetes and exercise.

1) Exercise is essential for managing diabetes.

2) Exercise is a nightmare for managing diabetes.

Say what?!

No, this isn’t the Twilight Zone, but it is a fairly well-known fact that exercise is both amazing and horrible when it comes to managing type 1 diabetes. For type 2 diabetics, who rarely deal with low blood sugars, exercise is almost all good. But with type 1 diabetes, it gets quite complicated.

In managing type 1 diabetes, you’re basically a juggler. You’re juggling known factors, like insulin and food, but you’re also dealing with unknown factors, like hormones and stress, which can impact how your body responds to insulin. They aren’t anything you can control, so you just have to deal with things as they come. Exercise is sort of in between. Exercise is something you’re aware of — obviously, you know when you’re exercising — but the effects of exercising can vary from person to person, activity to activity, and even day to day!

Because of this, I’ve never been much into fitness. It’s actually easier, in some ways, not to be athletic because it’s one less variable to worry about. That doesn’t mean it’s good for you! Of course, it takes a lot of time and practice to figure out how your body responds to different exercise routines and what your blood sugar target levels should be. Diabetes is a very individual disease!

For instance, yesterday I ran a mile at the gym and ended my workout at a great blood sugar. Today, I ran another mile, and ended with a low blood sugar. Frustrating! But on the flipside, I also know that fitness helps me become less insulin resistant, which means my insulin works even better, my blood sugars in the long run will be lower and more stable, and my body will also be healthier in other ways. One of the major complications of diabetes is heart disease, so having a healthy heart and body through fitness is another excellent way to achieve that.

Here are some tips that I have for switching from being a non-exerciser to an exerciser when you have diabetes:

1) Stay observant. Diabetes changes depending on the variables, and it becomes a little easier to manage when you start paying attention to all the variables. From food and insulin, blood sugars before, during and after exercising, and even time of day, all those can impact your diabetes. Once you see what combinations are more successful, you can start trying to duplicate them.

2) Food isn’t the enemy. A lot of people don’t want to exercise because they are afraid of low blood sugars, and that means eating. But calories and carbohydrates can actually help you lose weight and be healthy. The right food is fuel! So eating does not necessarily mean you’re discounting your entire workout.

3) Be consistent. It takes practice, and a lot of people want to give up after the first workout because things aren’t perfect. But just like your first run or first time at yoga isn’t going to be great, your first time managing diabetes while exercising probably won’t be great either. You have stick with it, make adjustments, and even talk to your “coach” (doctor or diabetes educator) before you eventually get to the point where things will be easier.

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There are also many inspirational athletes with diabetes that constantly remind me not to let my diabetes get in the way. From Phil Southerland, who cycled across America, to Zippora Karz, who 
was a prima ballerina, to Will Cross, who climbed Mt. Everest, there’s no accomplishment that is out of reach for a person with diabetes. However, one thing I have learned time and again is the need for practice. It’s like training for a marathon. You don’t just go out there and run 26.2 miles. You have to start slow, practice, train, talk to people, and learn. Only then can you be successful! 

DSC_1755.JPGIt can be so difficult to adjust to something new. Not only is it physically difficult if you’re not used to running or cycling, but it can also be difficult to stay on top of your blood sugars, because your routine is completely changed. In the long run (no pun intended!), the benefits outweigh the negatives, and I’m personally more committed to fitness than ever. Plus, with the support of the Diabetes Online Community, my endocrinologist, my diabetes educator and, of course, my husband, I know that I can manage my diabetes and stay fit.

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Thanks Allison!  Allison blogs at With Faith and Grace, and is an active diabetes advocate, member of the diabetes online community (DOC) and writer for Diabetes Mine. Currently Allison is pursuing studies that will lead her towards nursing and becoming a Certified Diabetes Educator, creating for diabetes awareness at Blue Cupcake Press . . . all in addition to maintaining an active and balanced life with type 1 diabetes. You can find Allison on Twitter at @WithFaithGrace.

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.

Morgan and I have been friends online since at least my first year of university (which started in 2009 . . . also making me feel like I will never get out of there :]). Between Morgan and I, we have a few shared diagnoses (asthma, anemia and congenital heart defects), but completely different experiences within each of them. We’ve had many long IM discussions late at night when things weren’t going so great, shared many songs due to our mutual interest in picking apart amazing lyrics, offered each other support and advice at times we really needed it, and shared our triumphs with each other. She was a great source of information for me when I was struggling to navigate the oddities of my own asthma, and shared her knowledge from the perspective of not only a Respiratory Therapist, but a patient.

I’m thankful to share some of Morgan’s perspective here today, in a post that truly captures the essence of many of the pieces of the puzzle of not only the chronic disease stories, but also the very things that brought us to become friends in the first place!  Thanks for sharing, Morgan!

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One thing thats hard about Congenital Heart Disease, Arrhythmias, Anemia, Asthma, and GERD is that they are “silent” diseases. No one really knows you have them unless they pick out the little clues: the scar, the exhaustion, the deep breath and stopping in your tracks to catch your breath when your heart is pounding out of your chest, the inhaler, the posture you take when you arent breathing so hot. This makes it hard for others to understand what its like to deal with. No one really “gets it” when you are having a bad day. People can’t fathom what living with chronic illness is like because they cant quantify it or qualify it.

One of my favorite coping mechanisms for life in general is listening to music; I love music in general, but one day I was in a rough place mentally (actually, I was dealing with preparing for a difficult procedure), and I heard one of my favorite songs in a WHOLE new light. It has changed my view on things as well as helping me get a better grasp on what it’s like to live with and grow up with chronic and invisible illness. It has also given me an easier way to explain things to others in a more tangible way. (its amazing what a little perspective will give you) The song is “Round Here” by the Counting Crows, and parts of the song really hit home…

“Step out the front door like a ghost
into the fog where no one notices
the contrast of white on white.”

When you have an invisible chronic illness going on no one gets it: the only indication is the scar, inhaler, etc It’s not tangible to the outside world, vecause its not visible, therefore, its hard to quantify.

“I walk in the air between the rain
through myself and back again
Where? I don’t know.”

While I’m doing my daily routine, especially when I am having a rough day I’m “in my head” alot trying to deal with the mental/emotional part of living with chronic/invisible illnesses, I’m putting a face on to just get by. It hardly ever gets me anywheres, but its definitely a journey mentally and physically.

“Round here we always stand up straight
Round here something radiates”

Again, a picture of normalcy, busy doing day to day things, conforming to the norm and trying to give off positive vibes, because if you arent positive, people around you tend to feel sorry for you.

“Round here we’re carving out our names
Round here we all look the same
Round here we talk just like lions
But we sacrifice like lambs”

back then I was busy at school and work trying to continue with the semester, trying to prepare for the procedure I was going to have mentally, and getting ready to take my boards; now I’m day to day at work trying to become the best I can be trying to make a living. I look no different than any of my classmates and co-workers, and therefore I am no different in most peoples eyes. It’s hard to be understood when your symptoms aren’t visible. If symptoms were visible, I’d have a hell of a lot of “well, why are you still trying to work” comments. My co-workers may understand clinically some of what I am dealing with, they know what SVT or Ventricular Bigeminy looks like, they’ve had patient’s who were short of breath but they don’t get it, they don’t know how it feels, they don’t see how it applies to day to day life, and how it affects my performance and my ability to work. I go to work every day, I advocate for my patients’ best interests. I try my hardest to be the best I can be, but sometimes I just cant be that all the time; sometimes I just need to break down and cry.

“Round here hey man we got lots of time
Round here we’re never sent to bed early
and nobody makes us wait
Round here we stay up very, very, very, very late”

Chronic illness can make you feel alone at times, especially when its silent, this lyric represents to me feeling alone in the work environment, but it also represents me feeling alone in having to take over my healthcare no one’s running that show any more. I have had to learn to advocate for myself, I’ve had to learn the in’s and out’s of whats going on with my body and how to deal with it. No one’s going to be there to tell me to take my meds, or when to go to the doctors, but on the other side of that, I’m the one who has to buck up and deal with the consequences when I’ve forgotten my meds, or missed appointments, or not gotten to the doctors when things aren’t right.

“See I’m under the gun round here
Oh man I said I’m under the gun round here
and I can’t see nothing, nothing round here.”

I’m under alot of pressure day to day, needless to say, sometimes it’s hard to get perspective, sometimes its hard to see the forest for the trees, but sometimes it helps alot when I’m not feeling well to be really busy, because I can put my head down and just get it done, but that can lead to not taking care of myself, forgetting to take meds, not getting enough sleep, not listening to my body, etc

It’s amazing how preparing for a big undertaking medically can put you in a frame of mind to see things differently. It’s also amazing how your mind can give you a perspective like this to help you through a tough time. To this day I listen to this song, and it speaks to me.

I think the key to living with chronic and invisible illnesses and living well with them is to find coping mechanisms, to reach out and connect with those who you can relate to. Listen to music, have fun, listen to your body, and most of all: Live life!!! Life has strange ways of teaching us lessons, all we have to do is be open and receptive to them. This is one of the biggest life lessons I have learned so far

“One Life, One World, One Chance, and I Don’t Wanna Wait, Wait!!!”

Morgan lives in Vermont and works as a Respiratory Therapist, where she is able to apply both her clinical skills and understanding of the patient perspective to those she helps on a daily basis. She loves music (as evidenced above!), coffee, cycling, cooking and spending time with family and friends. Currently, she and her fiancé are also busy preparing for their wedding in October 2013–congratulations, Morgan!! :]