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].

IMG_1392.JPG IMG_1390.JPG

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.]

IMG_1396.JPG

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.

385735_10152133615840375_1981623549_n.jpg

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.

IMG_1432.JPG

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.

I’m currently at 39,854 feet elevation, flying above the most Northern part of California at 504 miles per hour. It will take a series of blog posts to get down my full thoughts on the experience of this weekend in Palo Alto, California for the Medicine-X conference at Stanford University. There are so many stories, experiences and connections to touch on, and while they have all been amazing, the first thing I need to do is introduce my friend Steve, aka a million different nicknames but mostly the (famous :]) Breathin’ Stephen.

Steve and I have been friends through the world of blogging since pretty early on in my asthma journey. He hates when I say it [but I’ll say it anyway :)], but he’s one of my biggest inspirations, and quite honestly, my hero. He often describes us as “The Ultimate Odd Couple”, which could not be closer to the truth; however, there is this ridiculous bond that somehow ended up forming between us in the last three years–Ultimate Odd Couple or not, we totally click, and that just solidified in California.

Much to my own surprise, I didn’t get all teary on him at the airport on Thursday like I thought I would when we finally found each other in the International Arrivals area [I was only there like four minutes, Steve, I swear. Calling you was easier than being confused–your airport is confusing :).]  From the airport, Steve took me on a whirlwind tour of San Francisco [my flight was delayed an hour and a half from Vancouver because of the fog in SF, so we didn’t get to see as much as we had hoped to].

First stop was Twin Peaks.

DSCF1263

I need to come back to SF when there is less fog, but the view was still amazing. [And no, we did not plan to coordinate our shorts, we just kind of matched because we are amazing.]

Check out this view:

twin peaks

[Photo Credit to Steve]

This one’s my favourite:

Twin Peaks with Steve

[Photo Credit to Steve. Or the garbage can or whatever we used to balance the camera on ;). He’s the one who set up this shot though.]

DSCF1264

Giant Pride flag! LOVE.

DSCF1265

I swear we’re on the Golden Gate Bridge, even though I didn’t even really actually see it. That fog is intense.

golden gate

[Photo credit to Steve]

Look at that fog!

yellow submarine house

Having a native San Franciscian as your tour guide means you get to become aware of things like the Yellow Submarine House.

It’s by Ocean Beach :].

ocean beach 1

Kerri Pose on the beach

[Photo Credit to Steve]

Steve gets a true Kerri Pose on the beach!

Steve and Kerri on the beach

After the beach [where Steve made fun of me for running away from the water, I might add. Dude. I didn’t want to get my awesome shoes wet!)], we grabbed some pizza in Steve’s old neigbourhood [the dudes in there know him, it is unreal and the pizza was awesome :)] and made the journey to my hotel in Palo Alto. [Oh, and he brought me the GOOD KIND of animal cookies!! 🙂 They are awesome!] Unlike what we expected though, the story didn’t end there.

Sidebar explanation. Because, it makes the story make more sense but needs to be a sidebar so as not to detract form all the goodness above.

The unfortunate part is that I got kind of sick in California. I had a bit of a rough time breathing on my first flight on Thursday, but nothing I couldn’t deal with [utilizing entirely too many puffs of the inhaler, but, you do what you have to when you’re at 38,000 feet]. I was good on the second flight and thought it was just some weird short-lived, perfume and/or stress induced thing. First solo trip = stressful, yo.  By “kind of sick“, however, I mean that whether whatever it was that triggered the flight mini-flare persisted or something else triggered me in Palo Alto or prior to getting there, I’ll never know, but I essentially ended up having the worst asthma exacerbation I’ve had in the last two and a half years while in California. Cruddy timing, lungs. With a little help from my friends, I am usually pretty good at staying on top of things and getting back to baseline pretty quickly [and, being away from home made me deal with it more quickly]. If I’m going to, for whatever reason, get sick in a state I’ve never been to before, California was an okay place to have it happen. Steve is a Respiratory Therapist [and, though I was able to dissuade him, was more than willing to make the trek back to Palo Alto to bring me anything I needed (for instance, like the freaking nebulizer power cord I forgot at home) and has stupid crazy severe asthma (is that a good medical descriptor? Badassmatic, yo).  He actually brought me nebulizer meds at the airport because I wasn’t sure if mine would be apprehended at security for being not labeled (they weren’t)]. I always carry prednisone with me when I travel and I’ve never needed to break into it before, but I was extremely thankful to have the steroids with me.

Anyways, Steve was all over taking care of me from two hours away, checking in by phone several times and just generally being awesome–my personal Respiratory Therapist! For those wanting the details on the whole asthma situation, I managed to turn the worst of it around with a fair amount of Ventolin/Atrovent [both in the inhalers and in the nebs Steve gave me] and by starting prednisone. With the prednisone, since I hadn’t been on it in 2.5 years [go me!] I really had absolutely no idea how it was going to affect my body. Which, happened to be completely different than it has the last two times. Because I was concerned about flying home with my lungs all tight and uncomfortable, after some discussion, I threw back 50 mg splitting the dose in two on Friday, 40 mg Saturday, 35 mg Sunday, and so on. Whether it was starting 10 mg higher than I did last time or just the fact that I haven’t been on it in forever, while it turned my breathing around rapidly within about 24 hours [aka no longer coughing awkwardly through the Asthmapolis discussion], I ended up getting the stupid emotional side-effects of the medication and honestly just kept tearing up/fighting back tears at the most random intervals. [Honestly, somebody said something nice or unexpected or whatever to me, I was in tears, it was ridiculous.  It also made me super hungry–Medicine X was a good place to be on prednisone because there are healthy snacks every hour and a half and thus, unlike the last time I was on prednisone, I had no “I just drank a slurpee and ate a Reese’s chocolate bar and that does not mix well with pred tummy” feelings ;)]. Between some sleeplessness, whether breathing or steroid-induced, the prednisone-induced thirst and the needing-to-eat-all-the-effing-time thing, yeah, the pred sucks, but the effect it had on my breathing was so worth it. As I was writing this on Sunday, I’m not perfect yet, but so much better than I was, was correct, but yesterday’s flight adventure gave me a little backslide [regardless: so much better than I would have been had I not taken the prednisone]. I am freaking tired between the busy schedule, the craziness of the trip and the screwing up of my sleep pattern induced by the steroids [and now, after seeing the doctor, I am off school/work until Thursday and doing some gradual prednisone taper crap. Not what I expected to say the least.]

///End non-Steve related digression :].///

—–

This [Sunday] morning was the ultimate in seeing Steve’s compassion in action, though. We’ve covered I’m not good with prednisone [I don’t think anybody really is], but I’m also not good with not having concrete plans–the combination of them was not good. This morning, the intent was my friend Katie was going to pick me up from the hotel and take me to the airport via Rancho San Antonio for a walk [walk would have been no bueno anyways]. Long story short, miscommunications happened due to some unforeseen circumstances, and I basically freaked out when I couldn’t get a hold of her this morning [see also: um, going to blame the prednisone]. My friend Christina had also offered to drive me to the airport, but apparently prednisone + miscommunication = hysterics. I was so stressed out this morning which prompted me to send Steve a message in some fashion I can’t remember. After some back-and-forth for about an hour where I hadn’t resolved anything with either of my rides, and without any hesitation, Steve got in the car and came back to Palo Alto to take me to the airport [Read: bestest friend ever]. In this time, Katie got a hold of me, and we just ended up meeting at the hotel for a bit which Steve joined us for. Long story short, I am extremely appreciative and thankful for Steve’s willingness to be there for me when I am in stress/prednisone-induced tears on the phone freaking out at 6:30 AM. I honestly cannot say thank you enough. [In all his humility, he is probably going to tell me to take all these nice things down–not a chance, buddy, you are awesome.]  Really, these stories only scratch the surface of his awesomeness.

driving through northern california

Driving through northern california

He and I made the drive to the airport, where we hung out and had coffee [read: Steve had coffee. I had Vitamin Water. Prednisone tummy is evil and while I feel hungry, sometimes it’s like a few bites/sips into something and I am just done with it.  Fortunately and unfortunately, Steve is all-too-familiar with the prednisone shit, so if I am going to be a bit of a steroid-induced mess around anybody, he’s my guy and put up with me well] for a bit before he sent me off through security to my flight.

Airport with SteveSteve's blue eyes!

I like Steve’s expression in this one, the picture makes me laugh. PhotoBooth caught him off-guard, apparently. Hmm, apparently that was the theme of the weekend ;). See how blue his eyes are?

Airport with Steve

Yeah, I have the cool friends who will do ridiculous airport photoshoots with me. Actually, I think it was his idea to take more pictures.

Airport with Steve :]

Anyways, Steve . . . you are everything awesome I expected you to be and more. I’ve said it about four hundred times, but I really cannot thank you enough for your friendship, for putting up with me and my crazy messages super early in the morning interrupting your bass practicing [and checking in on me and my goofy lungs over the weekend], and your willingness to go out of your way to help me–not just today but countless times in the last three years. Today was just the ultimate show of that, and while you probably just want me to shut up now, I’ll just say it one more time: I can’t even express how much I am thankful and how much I appreciate your friendship because words can’t do it justice.  I’m so excited that I finally got to meet you and see your beautiful state! :]  Oh, and I promise next time I’m in California I will 1) be able to spend more time with you and 2) hopefully not be sick.

For the rest of you . . . the above [and more] are why I call him Epic Steve.

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!

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.

x2_e9a8e70

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!

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!! :]