Robot Surgeon Assistants and Smart Pills
Scientific American covers startling new medical technology that could save money and transform patient care. It’s like science fiction made real.
Work Stress = Asthma?
Yet another reason to revamp the abysmal vacation policies in American corporate culture.
Jarvis Williams, Former NFL Player and Florida Gator, Dies of Asthma Attack
He was only 45 years-old.
Generally, I like to focus on the more positive aspects of asthma parenting, like my gratefulness that my daughter’s airways respond to conventional treatments, giving her a happy, athletic, (relatively) healthy childhood, only plus medication. But as scary and tragic as stories like Williams’ are, they provide a crucial portrayal of the other side of this condition. Asthma can turn serious and life-threatening in an instant, and even if for the vast majority of patients it doesn’t, we can’t ever forget that possibility. The challenge, of course, being to balance that awareness with a positive day-to-day focus on life, activity, health, and fun.
Painting and Drawing Helps Severe Asthma Kids’ Moods
This article caught my eye because of all you patient bloggers and commenters who’ve been writing about your flaring this week. Your words are helping me understand the emotional toll asthma can take on a person better, so thanks so much for sharing. If I had my way, I would force all your lungs to turn the corner on recovery and stay that way.
And speaking of art, check out this video
Next weekend, I’m going to to the Denver Chalk Art Festival. The Sidekick loves all kinds of art, especially working with clay and covering my driveway with chalk drawings, so she and I went looking for information online about the festival and lost ourselves looking at famous chalk artist Julian Beever’s 3D drawings instead. (No, he won’t be at the festival.)
This is a time-lapse video of his creation process:
Photo up top by Flickr user Irargerich.
Regarding the emotional toll of asthma, at least part of it is in frustration when I either know what I need and don’t have the prescribing power or know-how to get it (like when I need prednisone because I haven’t slept more than 20 minutes at a time in over a week and my doctor says, “let’s just give it another week and see how it goes.” – I was about ready to scream then), when I really want to be able to do something and I can’t (like martial arts class yesterday when I couldn’t resist at least trying, and then had to drop out at the half hour point), or when I need to do something and I just can’t find the energy (such as today when I need an experiment done before the supervisor comes back from his vacation, and I was just too exhausted from lack of sleep and coughing and the headache that coughing so much gave me to do it, so I went home and slept instead – and woke up 3 hours later feeling slightly less exhausted but panicked because I felt like I was choking… turns out my PEF had dropped from 75% alll the way to 53% while I was sleeping, but luckily a few inhaler puffs took care of that, and if I can later I’m going to wash and change my bedding in case that was the cause of it).
Have you ever read the spoon theory? It’s written by someone with lupus, not asthma, but it applies to asthma. Except that, in exchange for not living every day like that, throw the wrench in that you don’t know how many ’spoons’ have that day (for all you know, you might have 3, 30, or an infinite number) or, if you do know how many you have, your ’spoons’ can at any time be cut drastically, and you don’t know when or if it will happen.
The emotional toll asthma takes on me is something I never expected, or never really understood till I started to realize my asthma was getting worse, and it seemed like nothing was working, and the ER trips were adding up, and everything was taking it’s toll on me and homework. This is partly why I even started to blog about asthma. It’s a part of my life that I can’t not pay attention to, and influences just about every single thing I do. Yet people who don’t have asthma really can’t understand what I go through, nor do they really care to know what I go through. Sharing with others who know what it’s really like helps, and though it may seem odd, I started to color my sign language book this semester. It helped me relax, and just enjoy putting some color onto the boring black and white line drawings of signs(and helped me study). I even colored an asthma action plan one day as it looked too boring and I needed a break from homework and breathing. And connecting with other asthmatics out there helps me when I am able to encourage them, as it encourages me to know I’m not alone.
The 3D sidewalk chalk art is soo cool. A friend showed me a picture of that kind of stuff a year or two ago… reminded me of summer days when I was younger. The culdesac was covered in chalk roads, houses, flowers, trees, stores, signs, and more every single day… we’d play there with the neighborhood kids, and my mom gave my brother and I each a chalk allowance of 2 chalks a day(yes, a chalk allowance). We’d play outside for hours with our friends on bikes, scooters, pedal cars, and more.
Sarah
a friend of mine who suffers from fibromyalgia, showed me the spoon theory and i thought it was quite brilliant.
You bring up a good point too about the number of spoons changing without warning for asthma
Sarah–I have read that, and love it – like Samantha, I learned about it from a non-asthmatic friend. The hard part about learning more of asthma’s emotional side effects is, of course, wondering if my own daughter will feel the same way when she’s older, and hoping she doesn’t have to. I hope, of course, she gets to be one of those teenagers/adults that doesn’t need maintenance meds at all, but that’s not looking very likely. On the other hand, she has nowhere near the severity that her young childhood led me to expect.
What I’m trying to say is, this week’s been a real eye-opener. I’ve assumed for a long time that things will never get as bad as they did when she was little and uncontrolled and even if they don’t physically, I’d never seriously considered they might emotionally, for her. It’s something I’ll keep in mind for sure.
MC–I’m glad you started your blog, and I think/hope the more people who do will help people care what you guys (and parents like me) go through.
And I can totally sympathize with the chalk allowance – the Sidekick goes through that stuff like candy.
It could be that she’ll remit in adolescence and have it come back later. That’s what happened to me, and I’m told it’s fairly common (especially for female asthmatics). As for severity, I think part of my problem right now is that I had some serious asthma denial going on toward the end of high school/early university. I was having asthma symptoms on a regular basis and didn’t tell anyone (or even acknowledge it to myself), so when I had the flu that kicked my asthma into high-gear, my lungs were already inflamed, my asthma was already uncontrolled, and the flu just added fuel to the fire.
That’s why I think it’s so very important for “recovered” asthmatics to monitor themselves and be honest with themselves. “Oh, I’m just out of shape!” doesn’t hold water when you’re the most active person you know and you can’t keep up with people who do literally no physical activity on a regular basis. That’s not being out of shape, that’s called “there’s something wrong with you.”
I’m not saying that where I am now would have been prevented if I had been on some corticosteroids before I got that flu because honestly, I don’t know. It could be that even with stellar asthma control, I would have ended up where I am right now anyway. But, that said, it’s sometimes hard not to wonder, “what if?” And it makes me want to make sure that nobody makes the same mistake I did.