Friday: The light on the answering machine flashes. One week and one day since blood work. It’s kind of surreal knowing that the substance flowing through my body keeping me alive could also be cluing us in to something.

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The hesitant call back to the doctor’s office to find the line busy. The second call after the agonized waiting. Getting put on hold.  The continued waiting. The click back on the line.

“She [the doctor] wants to talk to you about your blood work.” Kathy the phone lady [who may actually be Cathy, who knows] tells me.

I’ve learned from some of the best. I am not waiting a minute longer. “Is it the thyroid or the iron?” Cutting to the chase.

Both.”

I close my eyes as I sigh and mumble something to Kathy that I can’t remember.

The iron I was sure was eventually coming. Five years into becoming a vegetarian who doesn’t pay a huge amount of attention to nutrition like I know I should, it’s whatever. I’ll go in and get the lecture next week. I’ll work on it in the meantime.

The thyroid flag is probably hypothyroidism, of which I have some symptoms after consulting Dr. Google on hypothyroidism. Lazy butterfly-looking gland, what did I ever do to you?

So what happens? I get the results. I make the follow-up appointment for next Monday as it is not urgent. And then the classic tiredness that is hallmark of both anemia and hypothyroidism hits. I sleep eleven hours on Saturday night, nearly four and a half of them with my iPod on playing Brian Strean. I realize all the “random bruises” probably weren’t so random. I realize there is probably more than meets the eye. Isn’t everything?

It’s not a big deal. It’s just a pill a day. I think we caught it early, but I have no idea. Of course, at times over the last three days I’ve just wondered “what’s next?”. And for the millionth time “why?”. It’s that “one more thing”.

Even though I know I can do this, it’s that all-shaking addition . . . “for the rest of your life”. It’s that part that sucks the most.

edit: it’s been a few years since i wrote this, but all other thyroid checks have come back as normal–I’m not sure why the blip in my lab work, but as of my last T3/T4/etc. check in February-ish 2014, things looked fine.

June 6th is the “Day of Visibility” for people living with invisible diseases.

Most of the time, I look like a completely healthy twenty-one year old.

And I work hard to stay that way :].

I ride my bike [complete with the classic awkward nose zit. Twenty-one, that still happens].

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Get entirely too excited about doing the track at school with my friend Sam . . .

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Travel . . . and jump a lot and wear ridiculous outfits.

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Rock out on the beach . . .

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Go for “photo shoot walks” with friends.

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And generally do awesome shit.

But there’s the other part. The part where I manage an invisible chronic disease every day. The part where the only visible signs of this disease might be the medical ID bracelet that would have been on my left wrist in each of the above pictures or the blue inhaler in my pocket.

The part where I take multiple medications a day to stay healthy. The part where I inhale and snort steroids [corticosteroids] to decrease the inflammation in my lungs and sinuses. The part where I take three maintenance inhalers a day to try to keep things this way.

The part where I am working to stay healthy by taking my medicine and staying active and keeping myself in a sense of balance.

The part where I look healthy, but I’m exhausted but I am sick and fighting it out.

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The part where I do the best I can, increase my meds as I’m supposed to, and still that’s not good enough.

The part where I’m ready to just say “fuck asthma”.

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And the part where I cycle back to the first section.

The part where I live my life in a sense of coexistence with this disease that you can’t see on the outside.

The part where I do awesome shit.

The part where I know I can do this, even when it’s hard.

The part where I live my life.

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With anatomy, work, class and a crazy week in the mix last week, I feel like [aside from yesterday] I have not blogged in forever. And this is accurate. Caroline jolted me into this realization that i have been a less than attentive blogger the last couple weeks.

I declared 2012 to be the Year of Good Things. It is delivering.

I turned 21 last Monday. Last Saturday my aunt made me this:

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I went to my fourth Switchfoot concert, which was amazing. There was a spontaneous chant for moustaches. I fell in love with The Rocket Summer because of this concert.

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Medicine-X

I am excited that I will be attending the Medicine-X conference in Palo Alto, California!  As I mentioned previously, Stanford has graciously awarded many ‘ePatients’ with “scholarships” to the conference. For me, this includes the conference, accommodation for three nights, and a good portion of my airfare. I am VERY excited to meet so many people who I have connected with online, and who I have yet to connect with in September! I’m SO excited to meet Kim and hopefully Cherise at the conference as well as hang out with Steve in San Francisco the day I get in.

But before that . . .

World Congress on Asthma

In 2010, I partnered with the Asthma Society of Canada as a member of the National Asthma Patient Alliance Executive committee. I was finally able to attend a conference call in May, and engaged with many amazing, passionate people with my laryngitis voice. A few months ago we were supposed to attend an event in Toronto which did not work out, but we will be meeting in person in Quebec City this summer at the World Congress on Asthma! I am very excited for this opportunity and to be among the handful of patients attending the conference. During my time in Quebec City, I plan to meet with two of North America’s most prominent asthma researchers, Dr. Sally Wenzel and Dr. Dilini Vethanayagam, and am very excited to meet both of them in person after multiple e-mails not only about asthma research, but improving the patient support experience.  As a part of this, I hope to be able to connect with those in my own community (such as Cathy on the NAPA executive with me) and across the country, and around the world.

I’m also hoping to walk the Diabetes Run for the Canadian Diabetes Association in September, along with the small-town Imagine Mental Health race I’ve done the last two years. I suppose I’d better get training!

For the first time in two-plus years, I didn’t complete a 12 of 12. I only took six pictures. I was sick, and at the lake, and nothing really happened. I tried, but they didn’t happen. I was thinking I could cheat and post a bunch of random pictures, but in reality, I feel like it’s not legit if I didn’t take them on the 12th.

And when I say sick on Saturday, I mean full-frontal cold sick. Like absolutely ridiculous. I’ve had bad colds before. I’ve had long-lasting colds before. And I’ve had these with asthma before, but nothing quite like Saturday was.  This is The Plague: Friday night was the Leg Cramp from Hell, thanks bronchodilators leeching all the potassium from my muscles, in which both the posterior and anterior muscles in my right calf cramped up simultaneously.  Saturday was the coughing spasms, a continuation from Friday but incredibly intense and body-wracking. I did two doses of the inhaler and three nebs on Saturday to try to keep the cough to a minimum, and I really can’t stand to think what they’d have been like without the nebs.  Sick with asthma? For me, this is it. It’s countless hits of inhalers and multiple daily breathing treatments. It’s coughing so hard my ears pop. The coughing and the nebs are probably what lead to how my voice sounds:

Because you know what I’ve noticed? It’s all about better treatments. All the research. Never mind that we don’t know what causes this stupid disease, we know the root of it [inflammation and constriction of the muscles surrounding the airways in the lungs] and all research seems to care about is treating it. I benefit every single day from this treatment, and I am so grateful. But when one is to speak of advances in asthma treatment, there have realistically been very few in the recent past. even in the last 20 years, the medications are still much the same as they were in the 80s and 90s, with perhaps some modifications in how we are able to administer or dose our medications.  I’m not saying maximizing treatment options isn’t important. This affects my day-to-day life.

But I really want to see somebody trying to figure out the cause of this disease. How to interfere with that and stop this disease from developing to begin with. And once that’s found, figure out how to reverse the process so that we can cure this thing. It’s not about scientifically bunk treatments like bronchial thermoplasty [because surely burning the inside tissues of the lungs down works to affect the muscle on the outside from constricting, which is the bulk of the significant problem aside from inflammation in more severe asthma], or about the inhalers, or whatever “miracle cure” herb you’re trying to shove down my throat. I’m not into that. I want someone to figure out the pathophysiology and cure me, dang it. I don’t mention the word cure often because it’s too big to even think about. But I want one.

And when better to express my wanting people to actually care about a cure for asthma than asthma awareness month?

Because somewhere along the line, we have to stop settling for “good enough” and start reaching for “gone forever”.

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As I’m done final exams, I’ve already managed to screw up the posting every day bit of #hawmc. But, here goes at catching up!

So I’m kind of “screw pinterest”. I have it, but I don’t get it. Therefore, I don’t use it. So here is the legit bulletin board in my room. Much more fun, I think.

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Notes of encouragement, thank-yous, some Jesus stuff, guitar picks, a Canadian Breast Cancer Foundation lanyard, an appointment slip for asthma clinic, adorable barely visible lungs from several years ago. Post-it notes. Concert ticket stubs, To Write Love on Her Arms tag, buttons, a burn-fail CD that I drew on. MADMaking a Difference stickers from volunteer appreciation month at church last year, TallyGear information that came with my Tummietotes, movie ticket certificates . . .

And lots of guitar picks to accompany the guitar caught in the bottom of the picture.  There was also formerly a picture of the small group I lead, including my two girlies I do inclusion with, but I took that down for privacy reasons, obviously.

Essentially . . . pieces of my life in a nutshell, minus the physical activity part . . . maybe I need to change this! :]