Last weekend Chuck, my daughter, and I had the whole house to ourselves as the other half of the family was out gallivanting at a conference and rubbing elbows with famous people. We had an important agenda to accomplish:
Here’s a good interview of John Goodman by Jimmy Fallon. It is hard to believe Jimmy just got around to watching one of the best American films to come out of the 90s. It’s great to hear him laugh about seeing the funeral scene for the first time. I’d totally watch the sequel he pitched.
It’s easy to believe a lot of what you see on TV and in the movie theater until you come across something with which you have personal experience and say, “what the….” I first remember one of these instances sitting in the living room watching who knows what when a woman on TV was giving birth and my mother thought it was ridiculous. There was probably a lot of unnecessary sweat, screaming and flailing going on there. I just remember my mom thinking it was over-dramatized. I think the same can be said for asthma. At least 25 million Americans are diagnosed with asthma (“Asthma at a Glance,” National Center for Environmental Health, U.S. CDC, 1999) and COPD is currently the 4th leading cause of death in the US (Mannino and Kin, 2006). You’d think people would be more informed about lung disease and what it looks like. This also makes me wonder who is consulting with these writers, directors and producers as to exactly how actors should act in these scenes. To be fair, some portrayals are supposed to be over the top and exaggerated, but how is the average, free-breathing, entertainment-connoisseur supposed to know that?
Portrayals I find inaccurate, annoying, and what have you:
I have often seen asthma exaggerated, blown out of proportion, and not treated seriously in films and on TV. Children with asthma are often picked on, made fun of, ridiculed and seen as less than normal. They can’t go outside, participate in gym class, breathe normally, talk normally or do what they want in life. Their disease, condition, symptoms or even medication are used at plot points or MacGuffins, instead of just being a part of who they are. Even in the show Lost, the character Shannon has pretty convincing asthma, but it’s really just a ploy to find her medicine than anything else.
Mikey in The Goonies (1985) – way too many puffs on an OTC inhaler and later tosses it when he no longer wants it. Apparently I’m not the only one who recognizes this:
Uncle Junior in The Sopranos (1999) – OSA and his CPAP, can no one help him get his mask on properly?
Bobby Elvis in Sons of Anarchy (2008) – constantly trying to buy those “crazy expensive” albuterol inhalers, not to mention your average rescue inhaler has roughly 200 puffs in it.
Bobby – That dealer, she got that albuterol?
Piney – Probably.
Bobby – Tiki’s going through three inhalers a week…
Stevie on Malcolm in the Middle (2000) – overplayed wheezing and shortness of breath. Sorry about the poor quality of videos here. The first is a scene from an episode and the second is the actor, Craig Traylor, leaving a phone message as “Stevie.”
Morgan in Signs (2002) – suffers from an asthma attack without medicine while his father tries to help him through it.
Thomas in Black Hawk Down (2001) – soldier uses his inhaler before heading out on a mission, and yes I know there are questions to be asked about his active duty status.
Bob from Up in the Air (2009) – man loses his job and wants to know how he’ll care for his daughter without insurance. I really dig J.K. Simmons’ righteous anger here.
Barry in Sidekicks (1992) – teen with severe asthma manages his symptoms through a regulated exercise program.
So what’s wrong with asthma in pop culture?
I’m fairly certain there is no lack of education and information available about asthma. The problem is people seeking it out or stumbling across it. Unfortunately the main way people learn about things that aren’t in their face is through TV and film where asthmatics are generally depicted as:
Why asthma? Why did you select any life-threatening condition or the character, Carl Wheezer? Is asthma funnier than heart disease, diabetes, epilepsy, or AIDS?
There is nothing funny about growing up with asthma, a condition that robs children of oxygen, limits physical activity, and requires responsible use of inhaled medications and avoidance of allergens and irritants.
Was the character intended to educate children and the public about asthma?
If so, your efforts backfired.
Jimmy Neutron perpetuates the painful myth that children with asthma are emotional wimps that tend to overuse inhaled medications when faced with excitement.
It may not seem like a big deal, but these cartoons are both educating children on their limits and expected lifestyle AS WELL AS educating non-asthmatics on the appropriate response and treatment of those suffering with the disease. This includes other children, parents, teachers, family members and anyone else an asthmatic might deal with on a daily basis or run into only once. If this still doesn’t seem like a big deal, I’d like to point out several articles where two children and an adult find themselves in need of emergency care.
Personally I think we need to encourage children to make goals and support them in achieving those goals. I was told as a child I could do whatever I wanted and played football even though I suffer from severe asthma and severe summer/fall allergies. Instead of creating ridiculous, debilitating characters why not celebrate our fellow asthmatics who have proved they accomplish their goals. Asthma obviously didn’t keep Martin Scorsese from winning 111 film awards including an Oscar for Best Director on Hugo (2011). Here’s a short list of a few other famous people you might recognize.
John F Kennedy
Louis “Studs” Terkel
Ludwig von Beethoven
Peter the Great
Rev Jesse Jackson
William Tecumseh Sherman
So what can we do? I’ve decided to start blogging more to share my story and experiences. In just the past few weeks I’ve already been contacted by friends, family and strangers saying they’ve benefited from or learned something from things I’ve shared. I’m committed to be on the lookout for fellow asthmatics in need of assistance out in the world and taking action when necessary. I’m also looking to point out and share good examples of asthma in pop culture that will further asthma education around the world. In fact, there’s some buzz about a new movie, Asthma (????), directed by Jake Hoffman and starring Krysten Ritter from Breaking Bad.
This whole past week hasn’t been good with night time PF readings constantly dipping into the 300s. My daily breathing treatment count slowly climbed to 10 by Thursday and I was once again being seriously asked if I needed to go to the hospital. Of course I probably should have, but I really didn’t want to and had a case of the asthma-brain influencing my decisions. I figured I’d go the cheap route and call my doctor yesterday morning to bump up my prednisone taper or something. An email, I love that some doctor offices let you email them, to my primary care physician resulted in a quick reply that my doctor was not in today and suggested I contact my lung doctor. While some might think I was blown off, the response was actually quite reasonable. I still haven’t followed up with my lung doctor since I was hospitalized and they’re the ones that finally got me back on track in July before the drywall dust debacle at work last month. So I left a message at my pulmonologist’s office, you can never actually get a person on the phone it seems, and waited. I waited all day long and then ended up back in the ER.
It’s hard to describe, but unless I encounter a severe, unplanned trigger or circumstance – I can tell when I’m going to have a day bad enough to result in an hospital trip. I kind of had that feeling Thursday and I definitely had that feeling Friday morning. It’s that whole gut reaction thing. I hadn’t slept for several days, but did get a couple hours sleep in mid-morning. The sleep helps, but when you miss a scheduled breathing treatment, I’m not always sure which is worse. Chuck and Liz got home just after 5 and Chuck really wanted me to play with her. That’s about the time when the meds stopped keeping the symptoms at bay. A good friend of ours brought over some amazing chili and corn bread for dinner. We ate, Liz told me to go take more medicine, we hung out and watched some of The IT Crowd. I was back into the cycle of PF at 400 or below, neb, get back up to 500ish and then slowly drop back down. During this time I was noticing my O2 getting to 93, which isn’t bad, but also isn’t good, and when I’d start panting for no good reason I knew I had to keep an eye on things.
Around 11:00PM, PF values were at 350 and below. I went ahead and told Liz and decided to re-evaluate myself at midnight. An hour came and went. I did everything I was supposed to and took all my meds, but my numbers were still the same. It was time for ER trip #5.
I feel bad for Liz. Yeah I have all the breathing problems, yeah I go for days without sleeping, yeah I’m on tons of drugs and am always getting stuck with needles – but I do all this while often getting to forget about normal day-to-day life. Liz still has to go to work and teach, she ends up taking care of Chuck 90% of the time and that’s on top of everything else normal people do and take care of in their daily lives. So while I’m feeling awful and need a ride to the Emergency Room, Liz, who is already tired, knows she’ll be up until at least 4am, will most likely be wrangling our daughter tomorrow AND has work obligations in the morning. I think the Coen Brothers’ Nihilists say it best, “it’s not fair!”
Another quick PF check clocked me at 320, Liz’s mom came over to watch Chuck and I sloth’d my way to the car with asthma gear in hand. Thunder had just started on our way out and I wondered how many other asthmatics we’d encounter. With the high heat, insane ragweed/pollen counts and now a thunderstorm rolling in – I knew us lungers would be out in force. The trip there was pretty easy since traffic dies way down after midnight. When we pulled up to the ER entrance there was a less-than-smart citizen smoking a cigarette immediately next to the entrance. While I would have loved to share my thoughts on all the no-smoking signs staring at the guy, I shuffled as quickly as I could into the building without breathing in the poison. Before I knew it our friend from registration was telling a guy who I was cause she knows I can’t talk right when coming in. I scribbled my name on a piece of paper, tried to answer a couple of questions to someone else, and they wheeled me back to a room. Haley even came back later and got Liz some Subway. All I have to say is it pays to know people.
Usually I get stalked back to the room by several people but today was the exception. I lumbered off the wheelchair and onto the bed, was given a gown and the triage person left. Remember me wondering how many other respiratory patients would be in there today? Well there were a lot. Ten minutes go by and someone from radiology showed up with a portable x-ray machine to perform a chest scan. Liz told her it wasn’t really worth getting an x-ray right now because respiratory hadn’t even started meds yet. I’ve had this happen before and when my airways are so tight, I can’t really breathe in enough for them to get a good image. Five or ten minutes later you would have thought I’d just finished a marathon by the amount of sweat rolling off me because breathing can be hard work. Another PF check showed me now at 260 so I decided to just start a breathing treatment of my own. It really does pay to carry your own medicine with you. Half way through my own meds, the room nurse came by assuming respiratory had started their thing from the noise of my nebulizer compressor. She immediately put in another call to see where they were, got an IV started on the first try (last two trips took 4 pokes each), and set me up with 2L of oxygen.
The respiratory therapists, two this time, came by and were surprised to see me medicating myself. They hooked me up with a couple duoneb treatments, listened to my lungs several times and relied on Liz for information. Apparently I was really making their day because the main one announced they should go buy lotto tickets.
I knew my baseline, historical and current Peakflow information
I brought all my meds as well as had them listed on paper
I use a spacer
I’m compliant with my medications
I write down all meds taken and any circumstances surrounding my breathing
I had a fairly good idea of why today required me to come see them
They even asked if I had considered running a seminar on how to be a good asthma patient. As usual one of the first comments was, “well I’m not really hearing any wheezing,” but they were surprised at how little air I was moving. Liz quickly informed them of my general symptoms cause she’s awesome. X-rays came back again to get that chest scan and Liz heard the therapists out in the hallway talking about how I don’t really “seem asthmatic” at first glance but I’m obviously a severe. The respiratory therapists came back in to give me a 3rd treatment, but wanted my opinion on it since I had done nine in the previous 24 hrs and three more in the past hour.
RT: Here’s the deal, I think you could use another one, but I’m kind of concerned with your heart rate and the side effects. What do you think?
Me: Let’s hold off for a bit and see what happens. I’m already moving a lot more air.
After seeing my PF has gotten up to 450, they decide to go ahead and let me hold off for a while.
RT: We’ll check in with your doctor and see what he thinks. I’d give you more medicine, but they only let me neb you 3x before a doctor gets involved…cause I’m just a lowly respiratory therapist.
Me: Yeah, and I’m just a lowly patient.
My doctor rolled in and right away I could tell there was something different. On a rare occasion I encounter medical professionals too cool for school who want you to know they have it together. They’ll say lots of big words, not really let you answer questions and walk out leaving you with more questions than before they arrived. Dr C was not this kind of doctor, he was actually kind of awesome. He had obviously looked through all my info. He knew I had been there 4x prior, he knew I was on all the medications you would normally prescribe, and he knew I wasn’t your average asthmatic. After discussing my medication, treatment and brief history the conversation quickly turned to something more interesting.
Doctor C: Have you guys by chance heard of RadioLab?
We then discussed that guy who gave himself tapeworms to cure his horrendous allergies and asthma. While all three of us thought it was great the dude cured himself, Dr C wasn’t exactly endorsing the act of purchasing worms someone has harvested from their own feces. After we had a good, well as much as I could muster, chuckle about infecting oneself parasites, the topic of conversation quickly switched to my Maxpedition Jumbo Versipack, aka the Asthma Bag. I don’t know why all the medical people who see it thinks it’s so awesome. Kind of makes me feel cool just to have it. Doctor C picked it up and examined it thoroughly. He really dug my setup.
So what to do…Doctor C was concerned with my O2 levels. He also asked about other non-standard treatments they sometimes administer to avoid intubating. My oxygen saturation usually registers pretty high in the 97-98% range. After I had another breathing treatment and things settled down a bit, Doctor C took me off the nasal cannula to see who everything looked. I did dip into the 80s briefly, but mostly stayed at or just above 92%, which was the defined line. I was glad to not get admitted again. I would guess we probably spent 20 minutes or more talking candidly with the doctor. At no time was he acting like he needed to be somewhere else or one of his other patients in the ER that night was more important than me. Interestingly I later popped his name into Facebook and discovered we not only graduated from the same university, we have cool Facebook friends in common. Small world.
One great observation the doctor made was when someone like myself is on prednisone, the taper really shouldn’t end until several days AFTER I’m doing well. I did finally achieve that back in July but then had another setback with the construction dust flare-up. So my taper’s back up to a “big boy” dose and I’m fairly confident I’ll be ok through the weekend until I can follow-up with my regular doctors. The salumedrol is probably the most effective medicine I get at the hospital which I cannot give myself at home. It’s a corticosteroid, similar to prednisone, administered through an IV. I’ll be good for a couple days on that alone, and the extra oral prednisone should boost me the rest of the way.
This further cements in my mind the need to participate in an asthma research study. I’m looking forward to beginning SARP III next month. I’ve also been wondering if I should be nebulizing any other medications. I’m already taking Spiriva, but maybe something like scheduled DuoNeb treatments supplemented with Albuterol treatments would be more effective? Definitely something to talk about with the various doctors I’ll be seeing in the next few weeks.
Lastly I must mention the traditional drive through Taco Bell. The hours of labored breathing can really work up an appetite. I finally tried one of the new Fiery Doritos Locos Tacos. The Nacho Cheese variety is pretty decent, but I was really disappointed with the Cool Ranch. There just isn’t a strong taste to wow me into believing I’m eating an amazing Doritos-Taco Bell food combination. To be fair Cool Ranch Doritos don’t exactly have an over-powering taste on their own, but I feel it should be stronger when combined with a taco. The Fiery version takes the cake for me. It has a big, bold flavor that improves upon the standard Nacho Cheese.
For as much as I love hanging out, watching movies and studying the finer points of The Big Lebowski, you’d think I’d have no problem with “taking it easy.” I’ve been sick solid since mid-May this year. I’ve been to the hospital four times, made way too many calls to my doctors’ offices, taken five courses of anti-biotics and if all the steroids I’ve been taking were metabolic I’d look like Schwarzenegger from Terminator 2. You’d think this cycle of almost getting better and then trying to get back into what I shouldn’t be doing too early would have stopped by now, but I’m a bit of an idiot at times.
A few days ago I decided to just stay home from work next week.
It was about the time I thought I was doing ok and then no matter what I did my lung function kept dropping below 40% landing me back at the hospital on Thursday. It was interesting to see how seriously the hospital staff took me showing up again. While they were obviously trying to make sure I didn’t become worse, I’m sure others were trying to make sure they hadn’t released me too soon. I ended up bouncing back fairly quickly and got some of the advice I get every time:
Don’t forget to take your medicine – taking medicine is like a part-time job for me
Don’t be afraid to come back if you need to – that’s happened twice this summer
Try to avoid your triggers – this is my other part-time job
Try to take it easy – sure, that can’t be hard to do
Yeah…taking it easy. When I feel super awful I never leave my bed. When I feel just slightly less awful I make an attempt to get out of bed and live on the couch. While limiting my activity might sound like exactly what I’m doing, little things like getting more water, swapping a dvd, getting up to use the restroom, answering the door – these can all be way too much. One thing I do pride myself on is pushing myself a little every day no matter what my current breathing condition is. Some days that’s picking up the living room or doing laundry. Other days it’s me walking to the mailbox and back. On really good days it’s parking a half mile from my office and riding my bike after work.
Tonight a friend of ours came over to watch The Newsroom and I had been on the couch for hours. Even after seven breathing treatments today I start feeling bad out of no where. With all my “taking it easy” I’m now sweating, PF has dropped by 100 and my O2 saturation is down 5%. So I take another treatment and ride it out. An hour later my body has mostly chilled out. The coughing started and I decided to just take some cough syrup instead of letting it get bad. Now I’m back on the couch watching Anchorman (thinking about what a Newsroom/Anchorman mashup would look like) and wondering how late I’ll be awake tonight. I’m wheezing out of nowhere, more awake with the medicine I’ve taken and the only real reason I have for all this is nocturnal asthma. It’s just one of those things I deal with on a regular basis.
To be fair this is probably the best I’ve been in a while, even though I don’t feel good at all. It’s weird how “normal” changes over time when you never feel quite up to par. Once you get a little better you may think you’re a million bucks only to be reminded three months ago you would have been seriously concerned with this million dollar feeling.
A couple years ago I had to stay home from work for three weeks – doctor’s orders. My lung function improved 300% over that time period and I actually felt “great” for most of that hiatus. I’m not planning to stay home for almost another month, but this next week will be a great start in the right direction. At least I’ve been able to buzz through some HBO series and really beef up my Netflix ratings. That has to be worth something, right?
One of my fun things to do while watching movies is to imagine the different characters played by one actor, in different films and television shows, to actually be connected. John Goodman, who played Walter Sobchak in The Big Lebowski (1998), is in an upcoming film titled The Monuments Men (2013). Can you catch the bit in the trailer below where an older Goodman is playing soldier in WWII? I can clearly hear Walter Sobchak in the back of my head saying, “You know Dude, I myself dabbled with pacifism at one point. Not in Nam, of course…”
Feel free to ask if it’s not apparent or you just want to chat about it. The Dude Abides.