hello, good morning, how ya do? what makes your rising sun so new? i could use a fresh beginning, too . . . all of my regrets are nothing new.

[…] i’m dying to breathe in these abundant skies.

hello, good morning, how ya been? yesterday left, my head kicked in. i never, never thought that i would fall like that, never knew that i could hurt this bad.

i’m learning to breathe, i’m learning to crawl […]

learning to breathe, switchfoot

 

I will be completely honest that I have been very much out of the groove since the beginning of September. At first, I blamed it on readjusting to the new routine of school. Then I was crazy busy, and blamed that. Then I went to California. And we all know what happened in California [and, unfortunatley, did not stay in California].

I’m not intending for this to be a bitchfest post. I’m intending it to be an accountability point. While it is one thing that two or three weeks ago, doing stairs was still really hard, I am slowly getting back to where I want to be. The fact that I haven’t been working out lately prior to the asthma exacerbation is nothing’s fault but my own. I am the one who makes those choices, and I have not been making those choices. So, it is going to be doubly hard to get back to doing what I know I need to be doing exercise-wise because I’ve probably already lost a fair amount of where I was at the beginning of September from simply not being intentional. Yes, I’ve been busy, and yes, recently I’ve been sick. The latter is a reason . . . the former is an excuse.

Since I lost my Fitbit [seriously. It was honestly super depressing when I discovered it was MIA. The people at Fitbit are awesome and are sending me a complimentary replacement], and am constantly in need of some kind of motivation, I joined MeYou Health’s Daily Challenge site–I’d love for you to join me! I receive simple challenges every day to motivate me towards just making one small choice that . . . when added up . . . can make a big difference. It also helps with that intentionality bit by asking a few questions to help evaluate your current wellness–I’m hovering at 80%, likely because of some nutrition and physical activity issues, and dipped down today because I have been feeling stressed this weekend (see also: Darwin paper). The questions are simple, but really make me realize how I am feeling about things, which is awesome.

I get things narrowed-down in a nice little screen like this, helping me to see what I need to work on.  Emotional health dropped like 19 points I think just due to the stress factor. The physical health thing is quite obvious due to my state of physical activity and asthma lately.

Wellbeing Scores

The healthy behaviours bit, let us explore that a bit more:

Healthy Behaviour Score

Each domain can be outlined like this, giving some concrete ways of how to improve health in the determined area that might need some work. So, once again, this one is all about those little choices that add up . . . and the little choices that are dragging me down in some of the other domains adding up.

I know part of the exercise aversion is that I’m scared of two things, one being that I won’t feel good while doing it [which is basically a given at this point that it will be harder to breathe than usual] and two being that I’ll make myself sick again [which is, at this point, unlikely I would hope, but it comes with the package deal of having a wicked exacerbation, apparently]. The only way to crush those feelings though . . . is to try it.

Goals for the week:

  • Get rolling on the backpack snacks again.
  • Do what it takes to get more intentional about the nutrition on the whole [I might try the picture-taking method].
  • Give exercising a go again–take it slow, but try. Even if I make it ten minutes on the bike, that is much better than nothing.

 

i got my scars, i been to hell and back again. born for the blue skies, we’ll survive the rain. born for the sunrise, we’ll survive the pain.

we’re singing wait it’s not over now, we’ve been down but we’ve never been out . . .

we found a way out, the city takes everything it can. but outside the crowds, i can feel my lungs again. . .

dark horses, switchfoot

This is a Story from California, but it’s not going to become part of the Stories from California. Asthma is the reason I went to California, asthma was a big part of the story in California, but I want California to remain about more than asthma. I want it to remain to be about the stories, the change and the people.  In the asthma story of the last four and a half years, it’s a significant event, but I wish with everything in me that I hadn’t had to deal with it in CA.

I’m still coming off of my post-California high two weeks later, which may have intensified after I started feeling better. As I am hopefully on the tail end of the recovery exactly two weeks after staring the prednisone, here’s the story of what the heck happened with my lungs in Cali.

It’s been a couple years since we sorted my inhalers out and finally found a really good balance of medications that keep my asthma in pretty decent control. I take three or four inhalers a day but am overall taking less medication than when I was taking less inhalers, can usually turn things around with a nebulizer treatment or two if my lungs get rough, and am really generally pretty good at predicting where my asthma’s going and how to spin it back on track rapidly. Viral infections, like in the majority of people with asthma, are by far my worst trigger, and I’m lucky in that I don’t deal with much in the way of associated allergies–my triggers are primarily intrinsic, meaning either things going on within my own body trigger it [like exercise or hormonal changes], or my symptoms are triggered by non-allergen things like chemicals, humidity and cold. Infections, as noted above, are also intrinsic triggers.

My first flight was pretty rough on the breathing. I attributed it to being in a cabin full of fragrance-y people [I’m pretty sensitive to fragrances] and a couple dogs [I am apparently mildly allergic to dogs, but I refuse to acknowledge this]. At 38,000 feet, one does not really have a ton of option to get away from what is around them, so I sufficed with being happy that i had a one-seat buffer between myself and my row-neighbour, turned towards the window, and used my inhaler a few times throughout the flight.

By the time I got to YVR, I was good to go, made a speedy jaunt through the airport, cleared customs and security, and found my gate with time to spare.  Then, too much time to spare because my flight got delayed an hour and a half because of fog at SFO.  I figured at this point that a combination of the plane environment and stress had triggered the flaring on the first flight, grabbed some Cinnabon, and eventually found myself in San Francisco feeling pretty good aside from the occasional [normal for me] coughing. All good.

Of course, it would have been too simple if things resolved there. It would have been too simple if the crazy flare would have happened when I was hanging out with Steve who would have been all over rocking his Respiratory Therapy skills on my respiratory situation [which he did an excellent job of doing by phone, however–so.happy I had him around, oh my goodness]. And it would have been too simple if I’d actually prepared properly for something to arise while I was in California. I brought my nebulizer and five vials of Ventolin because usually all it takes is one or two to kick anything I’ve got going on [I can neb every four hours if I’m sick, so realistically I should have packed more meds but really, I was convinced I’d be fine. Wrong.], and I forgot to bring the power cable to charge the neb compressor battery–a mistake I won’t make again any time soon. I hadn’t brought my peak flow meter, so I was flying on only how I perceived I was feeling/responding to the meds.  All the nights I was in California I slept off and on, totalling four or five hours a night because of how I was feeling and using my inhaler anywhere from two to five times a night. When I start having nocturnal symptoms and actually waking up because of my asthma is when I know I’m in a bit of trouble.

[Here’s the one where I give asthma The Finger again on Friday in Palo Alto . . . Yes, hi Mom. Just warning you.  There’s a similar picture from Saturday morning].

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On Friday morning, I finally woke up for real after several useless inhaler hits, and did a Ventolin/Atrovent breathing treatment. Boom, open lungs [thanks Steve!], good enough to walk to Stanford with Kim. Six hours later though, when the treatment wore off, the inhaler wasn’t cutting it again. I busted out everything in the arsenal in my backpack and even braved some Ventolin through the spacer [there is nothing better than being surrounded by a group of ePatients, by the way] and while it took the edge off, it wasn’t killing the cough or the tightness. My neb was back at the hotel and not exactly an option, and because of the lack of power cord I was wanting to [as I usually do] neb sparingly, which probably could not have been stupider seeing as my lungs were feeling worse than they have in the last two and a half years.  By afternoon snack/break time [snacks are plentiful at Medicine-X] I’d talked with Steve and Morgan [another respiratory therapist] and threw back 50 milligrams of prednisone. Thank God that my medical team spans beyond my official medical people. [I also begrudgingly took the shuttle back to the hotel knowing the walk would not be a smart idea.]

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As I’ve said before, prednisone is not something I like in the least. I fight it with everything in me, but at the point where I am three thousand kilometers from home, having the worst asthma exacerbation I’ve had in two and a half years [the last time I needed prednisone] and knowing I need to fly [and preferably be comfortable in the process] in two days, it was only with minor hesitance that I started taking the drug. My thought was I’d start at 50 mg, and instead of doing a straight-shot of 40 milligrams for 5 days like my prescription said [confessions, confessions], I’d start at 50 and rapidly taper off by 10 mg a day.

As stated in a previous post, having not taken prednisone in two and a half years [it was shortly after my nineteenth birthday when I brewed a respiratory infection for two weeks and didn’t realize–read: paying attention to my body fail], and that prednisone is notorious for crappy side effects, I had little idea of what I was getting myself into and what the steroids were going to do to my body. Whether it was starting off at 50 mg, the fact that I hadn’t taken it in 2.5 years or what I have no idea, but while my asthma turned around pretty significantly in 24 hours, the side effects hit me hard. On Saturday I was somewhat of a starving, thirsty, tearful mess because of the prednisone. But . . . I could breathe. In those moments, it felt worth it to be eating nearly everything in sight, worth it to be waking up to drink water [and thus go to the bathroom], and even worth it to be tearing up at every.freaking.thing. [By 72 hours later, I didn’t quite have the same feelings that breathing was worth it–maybe deep down.]

So, running on four- or five-hours of sleep at a busy conference with crazy asthma going on is not a recommended activity. I had a bunch of really beautiful people around me to help me through it emotionally. I honestly have no idea how I’d have gotten through the experience without them being there for me, especially having Carly there who knew first-hand how the prednisone side-effects go down made me feel so much better about the asthma/steroid stupidness.

Sunday after some craziness, steroid-induced hysteria and miscommunications, Steve got me back to the airport and I was feeling okay without a breathing treatment in me since I was responding to the inhalers again, so I figured I was on the up. I took 35 milligrams of prednisone in Vancouver airport with an iced coffee.

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I’m unsure iced coffee is a recommended prednisone vehicle, but whatever. Like I said, you do what you have to do to keep healthy when all the situations surrounding being healthy are so not there.  Is it obvious how exhausted I am at this point?

In Vancouver, my flight got delayed an hour and a half [this feels like the way there, I know]. My lungs were starting to act up again, I was tired, I hadn’t done a breathing treatment all day, and I had an exam to write the next day, and I just wanted to get home. At some point during the four-and-a-half hours I spent in Vancouver International Airport, I found myself in the entirely non-awesome situation of doing a breathing treatment in the bathroom.  Both prednisone and bathroom nebbing are pretty strong testaments to how shitty I was breathing, because really, usually I hesitate to use my inhalers in the bathroom, never mind the neb. I don’t think I truly realized how sick I was until a couple days after I was home.  With a neb treatment deep in my lungs, I felt a bit more human and ineffectively worked at some Darwin and had friendly conversation with Woman from Prince George and Man Going to Calgary who were also stuck in the airport since WestJet’s flight map system was down. I was also realizing that writing an exam the next morning was going to be bleak if I still couldn’t breathe properly and was still effed up from the prednisone. I wasn’t exactly giving my lungs a chance to get better aside from pushing them full of medicine, because I really had little choice at that point.

I tried to get some sleep on the flight home, but essentially ended up listening to Matthew Good the whole time and spacing out the window. Prednisone is a giant catch-22 in which you’re exhausted from whatever you’re taking it for, yet it keeps you wired [don’t blame the iced coffee, that stuff has no effect on me. See also: delicious.] and makes it hard to get any sort of legitimate rest so that your body can recover. What fun. Odette by Matthew Good got me through yet another long span of hours of asthma:

I look tired but I, I feel wired and my body hums like it’s coming undone.

By the time my flight landed at home at 12:30 AM, I was so burned out. All I wanted to do was go to bed, and at that point I couldn’t even predict how I’d feel the next day. If the steroids and the asthma weren’t in the picture, things would have looked very different. I’d have spent more time studying because I’d have been able to focus my energy on the exams ahead and not simply making it home.

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By 8:30 the next morning, I was an exhausted heap in the doctor’s office getting a quick assessment, told to keep doing what I was doing and taper off the steroids gradually down to 5 or 10 milligrams [which I had every intention of doing anyways]. My emotions were almost more screwed up than my lungs at this point [thank you prednisone for both], and I found myself somewhat tearfully accepting the instructions to go get a doctors’ note so I could go home and recover and not go to school and write an exam.  Monday I bumped back up to 40 mg of prednisone because I was feeling worse than I had on Sunday thanks to the crazy travel day, then tore it down for the rest of the week eager to get off of the shit.

At this point, it seemed like an unfair toss-up. I could not breathe well and feel like shit and function, or I could breathe well and feel like shit from the prednisone and not function. Breathing, obviously, won out, and with a lot of snacks and patience towards myself and the emotional side effects [read: randomly tearing up in social psychology, the cafeteria and the university bathroom? Yeah, did that.]. I had intended to to be at work last Tuesday, I was back this past Tuesday. I am now those statistics about missed work days due to asthma. In the last three years prior to this, I had missed two days of work because of asthma [or, being sick in general, made worse by the asthma]. This in part was due to the asthma, in part due to the steroid side-effects, and in part that prednisone screws up your immunity so catching anything would not be a good scene. I had intention to show up to anatomy lab on Wednesday and ended up sleeping through it at home. I then planned to go to anatomy lab on Thursday but I got the time wrong and showed up as lab was ending, not starting so I missed making-up the quiz because I was sleeping on the floor of the university.  I think after waking up from my 45-minute nap for the second day in a row on Thursday was when i really realized how sick I must have been and how much of a beating my body was getting from this crazy exacerbation.

Things turned around, but not as rapidly as I anticipated to be fully better–as I write this over a week later, I’m still not fully better.  Sunday I went to the driving range. I am not a golfer, I do not claim to be a golfer, and I think I have never set foot on a driving range before. The first few rounds of balls went fine, but after about ten shots I was getting short of breath just hitting four or five balls over the edge and needing to take a break. Definitely not normal for me and not expected.  Steve and Morgan told me that it was likely I’d have some rebounding following the steroids, and Steve reminded me it might be awhile before I could exert myself without getting short of breath [he is always right, I don’t know why I doubted him this time] and things could take longer than anticipated to fully get back to my normal. Still, getting out legitimately for the first time since coming home [read: the only place I’ve been other than the indoor driving range in the last week has been the airport, the doctor, and school] was awesome.  Because the prednisone is such a powerful anti-inflammatory and is still having an effect on me, the inhalers are working extremely well at this point, so I hope that things stay like this for awhile.  I’m not even close to being able to work out again, but I’m hoping I can start working up to it by the end of next week.  I had to reschedule two exams and a lab quiz, so I’ve now dealt with the insanity that is truly mixing the asthma thing with the school thing–usually I am pretty good at making them non-interactive, save for the time I had a slight respiratory situation in Teaching Games for Understanding.

There’s no moral to this story. I learned that I always need to prepare for the worst and hope for the best [the hard way], I learned that even when I think things are going to be fine that asthma, or any other chronic disease, can still be extremely unpredictable even when I think I am in good control. I learned that as much as I hate the prednisone, and as much as I hate it even more now, sometimes it is a necessary evil. I learned that just because I usually only need a couple nebs to turn something around doesn’t mean that is always the case, especially going somewhere I haven’t been before and being three thousand kilometers away from home and my asthma care team. I learned that as much as I hate them sometimes, the nebulizer and the prednisone are powerful tools in my arsenal–underscoring the importance of bringing them with me when I travel. I’ve carried prednisone when I travel for a couple years, but it’s never been necessary but I am so, so thankful I had it or else I would have been completely miserable.

And I learned that, including my friends and even my instructors and profs at school (two of whom who simply rescheduled my tests/quizzes without even looking at my doctors note) I have, as I’ve said before, a bunch of really awesome people in my life who will stand by me through the good and bad. Special thanks to Kim for being awesome, supportive and making me feel totally normal through it all, to Carly for sharing in the understanding of being “‘roided out”, to Morgan for her advice, my boss for being amazingly understanding about the whole thing [and turning the tides and basically telling me I needed to not come in last Friday] . . .  and finally, to Epic Steve for being my personal respiratory therapist while in California–I have no idea what I would have done without him checking in with me throughout the days I was at Stanford, helping me figure out what to do next, and sticking with me through the whole crazy experience.

And asthma or not . . . I wouldn’t trade that, wouldn’t trade those beautiful people, for the world.

Outside of the physical room of Medicine-X, the biggest part of the story can be found on Twitter, where for two or three straight days, the #medx hashtag was exploding into use capturing quotes, stories and feelings in the moments surrounding Medicine-X.  The best way to recount my experiences is probably through Twitter, with some commentary thrown in for a little bit more context [context ended up being a bit of a buzzword at Medicine-X.

For this purpose, head over to the Storify page for my time at Medicine-X, to walk through the moments in somewhat real time–including many of my new [or simply new-in-real-life!] friends, some photo-shooting in the back of a boring session, a football announcer, lots of snacks . . . and an introduction to “Club Med-X”!

 

Disclosure: I was fortunate to receive an ePatient scholarship from Stanford University with partnership with Alliance Health Networks and the Kadry Foundation to enable me to attend Medicine-X, including conference registration, some meals and snacks, hotel and $300 towards my airfare to California. I was not required to blog about the experience at Stanford [but I’m sure they could feel pretty darn safe I would].

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.

—–

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!

—–

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!! :]