I know I’ve been quiet lately (busy busy!) and I promise to have an update up soon!
In the mean time, Karla at SoundAsthma invited me to guest post on their blog–I’d love to hear your feedback on the topics of being an Asthma Warrior, Randy Pausch, or how positive perspective ties into your own asthma [or other chronic disease] management!
Here is another one of those iamtheworstbloggereveritsbeenforeverandileftyouallwithacliffhangerohmygod posts. Now that we have that over with . . .
Appointment update. I saw the doctor on Monday. My iron is way lower than it should be, so I am supplementing with essentially as much as my body can tolerate [which is essentially the nice way of saying: take as much as you can because this is not good, a nutritional re-vamp is not enough alone, lady. Fine then. At least chocolate milk has iron in it?]
As for the thyroid, my TSH [thyroid stimulating hormone] is borderline high. So when we go re-test the iron in August, we will re-test the thyroid. Essentially, and it is kind of confusing, high TSH = lower thyroid hormone production; low TSH = high thyroid hormone production. So there you go.] The short story is that while I do not fully have hypothyroidism yet, however, it could go either way: best case, it corrects itself [this is what the internet tells me might happen, so I am not overly optimistic], otherwise, my thyroid hormone production will keep dropping, therefore my TSH will keep going up, and I will have hypothyroidism. So it is the game of wait-and-see, which kind of sucks more than just getting the diagnosis over with.
School update. So alongside this, I am also failing anatomy. I’ve been doing twice-weekly tutoring sessions with my friend/now-coworker Danielle and making flash cards and filling out charts, and all that supposed goodness. There is just so much stuff to remember, and this class is hard. I have five days left, so fingers crossed I make it through this and don’t have to repeat come Fall. I filled out eight pages of muscle charts today, and there is more to come, plus a tutoring session tomorrow. I am so close, but so far from being close enough. I’ve had so many of these close calls with dumb classes this year, like Principles of Coaching, but this is by far the closest aside from Intro Kinesiology where I failed pretty hard early on and then pulled myself up to a B. So there is hope to pass, but I’m just riding it out and not holding my breath on anything. i’m working hard, but it’s just nerve-wracking to have 50% of my grade riding on a 27-hour span of time. Three. More. Days.
Also thanks to studying, I’ve eaten like a third of a pan of rice krispy cake today [my mom put chocolate chips in it. Who can resist chocolate chips?]. And likewise have gotten no exercise.
QUEBEC. The Asthma Society of Canada booked my flight to Quebec City for August. I am so amped. Except I need to probably learn some French beforehand. it’s going to be a whirlwind trip, as I will be in-and-out of Quebec City in 33 hours and back home in just over 40. Or something. [I’m bad at math at the best of times and it’s currently 12:10 AM.]
Race training. And, another exciting bit! As soon as this exam is over, I’m kicking up the training for the Canadian Diabetes Association 10K walk in September! Wanna support me in the race and support Canadians living with diabetes? Hit up my fundraising page! Live in my area and want to race with us? Shoot me an e-mail. I’ve got hopes to get “team” shirts made, and hopes to rock a blue tutu on race day! With props to Jay, we’re going to be called Good Things Run on Insulin, and it’s going to kick ass.
Speaking of kicking ass . . . This is me on Friday. Rocking my You Can Do This Project t-shirt, kids’ scarves [one of which happened to be blue for Blue Friday ;)] and my sweet new ID necklace from Lauren’s Hope! :] [To follow up on a previous entry, I am not continuing my MedicAlert membership after August. They offered to decrease my membership fee from $5 to $4 a month, but why should I when that doesn’t help anybody but me? i’ll be rocking my cool Lauren’s Hope ID, hunting down an epic interchangable bracelet, and sporting some Road IDs [I can get multiple Road IDs for the same price as a MedicAlert sportband. Boooom!] Anyway, oh my goodness, look how kick ass this necklace is!
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].
Get entirely too excited about doing the track at school with my friend Sam . . .
Travel . . . and jump a lot and wear ridiculous outfits.
Rock out on the beach . . .
Go for “photo shoot walks” with friends.
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.
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”.
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.
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:
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.
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”.