Mon, 23 November 2015
I always find myself telling people (who are just so interested in me, duh) that often cystic fibrosis is not what’s making me sick. Typically, the fevers, gross cough, fatigue and just about all of my problems stem from the bacteria living in my lungs. That’s not to say that CF creates a number of issues in itself, but ugly bacteria, as I have said time and again, are problematic.
Over time, bacteria become resistant to antibiotics because the strains evolve very quickly, leaving people who suffer from infections with fewer treatment options. For people who have CF and are constantly dealing with bacterial infections, antibiotic resistance is a significant topic. In the CF world we have a very succinct set of guidelines to help prevent bacterial infection.
A point of emphasis for people with CF is that our interactions between patients must be limited. We call it “the 5-foot rule.” At all times, two CF patients must avoid direct contact with each other, or stay at least 5 feet away from each other, which does sometimes make things a little awkward when people with CF happen to meet in person. The reason being (and in very basic terms), two people with CF can transmit (I think that’s the right word, I’m no scientist) bacterial strains between each other like two healthy people could give each other a cold. There is just a little bit of a difference between the two noted examples. While the common cold may last for a few days, bacteria can colonize inside a CF patient’s lungs leading to catastrophic consequences that last a lifetime. In-person patient interactions, as a result, can be extremely dangerous. As with anything, though, for someone like me in my line of work, at times the 5-foot rule can be impossible to adhere to, but I do always take necessary precautions if I get into a sticky situation.
I have to believe this “rule” exists for two reasons. The first is that patient safety is a paramount concern. It’s irresponsible to expose oneself to unwanted bacteria. The second and perhaps more important reason this “rule” exists is to prevent the spread of antibiotic resistant bacteria within the CF community, which makes sense because it becomes a public safety issue – the public, of course, being cystic fibrosis patients since we can’t infect healthy people. If you want to learn more about the science behind that, attend a biology class at your local high school, and attempt not to be creepy.
So where am I going with this?
Over the weekend a BBC article caught my eye on my Facebook newsfeed. To answer your first question, no, I do not find myself reading BBC news all the time.
The article (http://www.bbc.com/news/health-34857015) talks about the very real possibility of a “post-antibiotic era.” While it does not mention cystic fibrosis specifically, it does implicate CF patients.
From the BBC:
The world is on the cusp of a "post-antibiotic era", scientists have warned after finding bacteria resistant to drugs used when all other treatments have failed.
They identified bacteria able to shrug off the drug of last resort - colistin - in patients and livestock in China.
They said that resistance would spread around the world and raised the spectre of untreatable infections.
The drug mentioned in the article, colistin, has historically been a popular drug used to treat infections within cystic fibrosis since it is both strong and can be administered via nebulizer. In fact, as I sit here writing this blog post, I am sucking down some colistin right now. It has a little bit of a thick taste to it, and it probably leans towards being more bitter than it does sweet. I have also used the IV form of the drug in the past, and let me tell you, that was quite the experience – maybe I’ll write about it sometime.
The BBC comments on the study posted in the Lancet Infectious Diseases:
Common infections would kill once again, while surgery and cancer therapies, which are reliant on antibiotics, would be under threat.
Chinese scientists identified a new mutation, dubbed the MCR-1 gene, that prevented colistin from killing bacteria…the resistance had spread between a range of bacterial strains and species, including E. coli, Klebsiella pneumoniae and Pseudomonas aeruginosa.
There is also evidence that it has spread to Laos and Malaysia.
Prof Timothy Walsh, who collaborated on the study, from the University of Cardiff, told the BBC News website: "All the key players are now in place to make the post-antibiotic world a reality.
"If MCR-1 becomes global, which is a case of when not if, and the gene aligns itself with other antibiotic resistance genes, which is inevitable, then we will have very likely reached the start of the post-antibiotic era.
"At that point if a patient is seriously ill, say with E. coli, then there is virtually nothing you can do."
The article does note that MCR-1 has been identified in 16 patients suffering from E. Coli. With that being said, don’t quit on me now – the article also mentions that there are new antibiotics on the way, but they are still in very early stages of discovery. New antibiotics, by the way, are something the world has not seen in about 30 years.
The BBC article finishes up:
A commentary in the Lancet concluded the "implications [of this study] are enormous" and unless something significant changes, doctors would "face increasing numbers of patients for whom we will need to say, 'Sorry, there is nothing I can do to cure your infection.'"
This is a problem – a very real one. I’ve read several articles over the past year talking about the post-antibiotic era, but the BBC one is terrifying. Many of these articles attribute this to the misuse of antibiotics. Bacteria are evolving faster than we can develop new antibiotics – see above where I said it’s been 30 damn years since we (humans) have developed anything new in that department.
People with CF depend on antibiotics for survival, and organ transplants cannot be accomplished without them. The natural remedy you found on your post-graduate backpacking trip through Vietnam and Cambodia, unfortunately does not work in the real world, or in any world for that matter. Antibiotics are designed to eliminate bacteria. I very much attribute my survival thus far due in part to the antibiotics I have been fortunate enough to receive, either through IV, pill or nebulizer. The moment we lose the power to use antibiotics, is the moment we are all in trouble. Something must be done.
Last week I did an interview for the Adversity 2 Advocacy Alliance with its founder Jeff Bell. The interview aired on KCBS radio in San Fransisco, but you can listen here http://a2aalliance.org/a2a-spotlight/a2a-spotlight-gunnar-esiason/#prettyPhoto[gallery1708]/0/
Also, I want to announce that over the next week or so you will see major upgrades to www.GunnarEsiason.com. You can also LIKE me on Facebook now at: https://www.facebook.com/Gunnar-Esiason-476094652571527/?fref=nf
Category:general -- posted at: 11:37am EST
Fri, 23 October 2015
It’s tune-up time again!! A “tune-up,” for those of you who aren’t in the know, is when the IV antibiotics have to come around to kick some ass. Sadly, bacteria can be stubborn. On the flip side of things, stubborn bacteria are probably why we still have life after the dinosaurs went extinct. Science.
I have a hard enough time sitting still regardless of my health. My problem is compounded when I get “sick” and am told to rest. “Rest,” they say, “is the car that drives you down the road to recovery.” Okay, well maybe, but it’s a pretty damn boring car ride. I get eight hours to rest over night, why do I need to extend that for an entire course of IV antibiotics? I’ll give you the first few days and take some time to recover, but after that, it’s game on.
When things start to go bad, as they inevitably do from time to time, and air is just a little harder to come by, I have a few things that I like to do to pass the time of a two or three week course of IV antibiotics. I guess if you want to see the real me behind the disease, this list of little “hobbies” might give you a glimpse of what a nerd I actually am.
1. Stay Out of The Hospital – My parents decided when I was really little that they were going to keep me out of the hospital by whatever means necessary. The hospital is a gross, disgusting place. From early on, they learned how to administer my IV meds with training from homecare nurses. As I got older, I learned how to handle the meds myself, which really gave me the opportunity to be completely independent in college. Too often do I hear of people with CF leaving college for weeks at a time to go get hooked up to an IV pole in some hospital room. It’s not hard to learn how to work the damn thing. Figure it out, get yourself out of the hospital – don’t waste two or three weeks of your life staring at a blank wall making someone do something that you can do yourself. It goes by much faster if you aren’t trapped in a hospital bed.
2. Video Games!!! – I f*cking love video games. I’m not sure I know any other way to describe my love for video games than to say that I f*cking love them. They are so fun. If you give me an Xbox, a copy of Battlefield 4 and a headset, I’ll get online and coordinate a virtual drone strike with 32 perfect strangers faster than you can say President Obama. My team usually wins. I ain’t got no time to lose – that is, when I am trying to kill time because I’m sick.
3. Get back to work – I know bed rest is the key to the car to drive down the road to success or whatever I said, but really, let’s be honest here, recovery and returning to normalcy walk hand in hand. I’m not saying taking some time to take it easy isn’t a good thing, it’s definitely helpful, but that’s how bad habits can get started. It’s dangerous to get comfortable in a lazy life.
4. Reading is good – I like to read. I think that’s probably pretty obvious since I write so much. There is something very active about reading; it doesn’t seem quite as sedentary as watching a movie or playing video games. Whenever I go on IV, the meds are an hour or longer, that’s a good chunk of time to make a dent in a good book.
5. Return to activity – I am fortunate with this one. Since I coach hockey and football in season at a high school, I spend a ton of time on my feet. Nothing speeds up my recovery quite like getting up and moving around, especially on hockey skates. It’s really almost like the lightest form of exercise, except for maybe walking around the block, but it gets the job done for about a week before the PICC line comes out and I get my life back.
6. Get out of the house – If returning to activity or work isn’t quite in the cards just yet, maybe I’m still coughing up some really infected mucus or my fever just won’t quite break, I find that getting up and out of the house for a few hours can go a long way when it comes to my sanity. I have no problem going over to the movie theatre and catching a flick solo. There’s something really peaceful about being by myself, disconnected from the world, and watching Tom Cruise blow up a ton of shit on an IMAX screen.
7. Extra treatments – I’m not sure I even need to say this, but it’s probably the most important one, so I’ll include it in my little list. Satisfaction with being sick is a scary thing. I view it as my personal responsibility to make sure I am not too comfortable when I get sick. Let’s say I have a 2-hour IV drip due at 3:00pm. It’s too early in the day to watch Jeopardy and I already spent a couple hours blowing people away on Xbox Live, what else is there to do? EXTRA TREATMENTS. A third or maybe even fourth treatment session during the day will help speed up things on the back end of the IV course.
8. Eating is finally fun – Eating is rarely exciting for people with CF. For whatever reason it’s just hard – I’m no scientist, so I can’t tell you why – but normally, it sucks. The exception to the golden rule is when steroids are introduced – IV steroids. I’ve only ever had to use them a handful of times, but let me tell you, it is not hard to see why Mark McGuire loved them so much. Hell, I felt like I could hit 76 homeruns last time I used them, and this is coming from someone who has a hard enough time making contact with a whiffle ball. One side effect from steroid use is increased appetite. You better damn belief that I use that one to my benefit – I could spend hours at the dinner table.
9. Getting things done – When I’m sick I’m forced to spend more time on my ass than I would like, I think that’s just assumed. It also means plenty of time around the house, which is always a good time to catch up on things that I’ve been behind on… like figuring out what to do with my collection of the millions of free t-shirts I’ve accumulated over the years. Or like… writing blog posts.
So here they are… just some of the things that help me keep my head on straight when I’m down for the count for about 2 or 3 weeks. Sadly I don’t see myself in a rocker knitting a sweater or something, so these are my mindless activities.
The undisputed top 10 ranking of video games EVER:
1. SOCOM 2
2. Battlefield 4
3. NHL 13
4. Halo 4
5. Halo 1
6. NCAA Football 14
7. SOCOM 1
8. Star Fox 64
9. Mario Kart 64
10. Grand Theft Auto 3
The Boomer Esiason Foundation is promoting a video featuring my sister, Sydney, to be released soon! This will be a great resource for so many CF families. She has been a great shoulder for me to lean on when times are tough, so I can't wait to see the finished product. It’s also going to be fantastic because I can promise you she will probably talk about how awesome and cool I am. If she shockingly decides not to talk about my greatness, then, well, this video project will go up as a failure…
Category:general -- posted at: 10:16am EST
Thu, 1 October 2015
Thanks to Elizabeth Gaccione for starting up #SingForCF benefiting the Boomer Esiason Foundation and the fight against cystic fibrosis! Since God made America free, I'm challenging 5 people instead of 3 to record a video of themselves singing... good luck, you'll probably do better than me. I want my sister Sydney Esiason, New England Revolution Sideline Reporter Jessie Coffield, the BEF's very own Mike Hill, my college roommate David O'Kane and one of my first friends, Taylor Fleishhacker all to complete the task! Remember, you can always make a donation at www.esiason.org
BTW it's.... "I wore cologne"... not "I walk alone"... just fyi #blink
Category:general -- posted at: 9:53am EST
Tue, 15 September 2015
So, the other day I coughed up some blood. It’s pretty awesome when that happens. It’s also a pretty great party trick. “Hey, want to see what I can do?”
If you’ve never had the pleasure of trying it out, let me take you through the experience. First, there’s the gurgle – it sort of feels like there’s mouthwash swishing around a particular spot in the lung. Usually the bleed only happens in one lung at a time, so it’s pretty easy to pinpoint where the leak is.
After the gurgle comes the cough. It’s really just kind of a natural reaction at this point, I think. If I feel something weird, I just start to cough.
Next, comes the gag. The cough brings up a lot of stuff with it. So much, that it’s natural to choke on it a little. I mean, that stuff is blocking the windpipe after all, right?
After the gag, it’s the taste. If you aren’t a vampire or a huge fan of Twilight, then I’d be willing to bet you’ve never savored the taste of blood. There’s a very metallic flavor to it. Iron to be exact, with a hint of salt. It’s also warm and quite soft like the inside of chocolate cake.
Finally, there’s the spit. Blood is pretty gooey, so it kind of just slides right out of the mouth and hopefully into a cup. Missing the cup can lead to a disaster. Blood stains. No one likes to see that all over the bed sheets, because oh, yeah… this really only happens in the middle of the night when no one is around to help. You see, I’ve gotten pretty good at this, because I don’t need to have blood all over my bed. Because if I do have all these stains, then basically, if I am trying to have an adult sleepover with some babe that I just picked up at the bar, then I’m striking out before I even get up to bat.
In all seriousness, it actually sucks. My biggest issue with the whole thing is that is tastes really bad. It’s also not something that I love seeing when it does happen. I don’t recommend trying it. Oh, and for those of you keeping score at home, I’m totally fine. 999 out of 1000 times, coughing up blood leads to absolutely nothing. It’s just a matter of making it stop, that’s the important thing. Imagine that… a life where coughing up blood is considered fairly normal.
Now, with all of that in mind, I decided that I should go ahead and list the 13 idiotic things that can totally go wrong in my (or anyone with CF) day.
1. A bleed. Obviously we are starting here, didn’t you just read all that? The strangest time I’ve ever gotten a bleed was during my junior year of college. Florida State played BC in a Thursday night football game on ESPN. Naturally, people who were brilliant, like me, opted against scheduling classes on Fridays, so we went crazy. After tailgating, then 4 hours of adding my voice to the DEAFENING crowd noise that can be heard at BC’s Alumni Stadium, I sprung a leak. BC went on to lose 38-7. It was totally worth it.
2. Waking up without a voice. Coughing is never fun, especially when I do it like 9 million times in a day. Sometimes the old vocal chords want a break. What can I say…. Evidently not too much when I can’t talk.
3. The food baby. People with CF don’t have the best digestive tracts in the whole world. Fat doesn’t get digested properly. It tends to smell. It is what it is. If you think that’s bad, just think about what’s going on inside me. When I wake up in the morning after using the feeding tube, or sometimes after a Thanksgiving size meal, I’ll bloat and it will look like I’m packing a food baby in my stomach. It’s kind of a crazy look. Skinny everywhere, then bang, bloated stomach.
4. Numb fingers. Remember in that one post I said we, people with CF, have alien fingers and toes? Here’s the link in case you don’t remember: http://gunnaresiason.com/dont-say-that-to-me. That’s called clubbing. It happens when oxygen doesn’t reach the extremities because… I’m not going to go into that; it’s science, or something. You should know by now that this whole fight is over oxygen. Anyway, when the oxygen doesn’t get to my fingers or toes, that sh*t just goes numb, kind of like when you roll over on top of your arm in the middle of the night and wake up the next morning without the ability to turn off the blaring alarm clock.
5. The oozing hole. Come on, I’ve told you a million times, this isn’t that kind of website. This is for my G-Tube people out there (REPRESENT). We are sort of like the elite of the elite CF patients. We ain’t got time to eat 5000 calories each day, so we just jam that sh*t through the tube. Just kidding, but not really. Either way, the tube kind of leaks sometimes. I have no idea what is leaking out of the wound, but it kind of looks like slime. You can ask the scientists, they’ll tell you exactly what is coming out and what its bodily purpose is. It’s Brown slime, not the green kind that’s featured on Nickelodeon. I guess I could get the wound cauterized and then the problem would be solved, but I’m not trying to get burnt anytime soon. I’ve seen Braveheart – it looks like zero fun.
6. I’m totally covered in it. This is another one for the G-Tube people out there – they will know exactly what I am talking about. I cannot tell you how many times I woken up in the middle of the night thanks to a feeding tube malfunction. There is nothing worse than when the pump disconnects from the port in my stomach. It’s a lost cause from the moment it happens because there’s nothing that can be done until I wake up in a puddle of high calorie formula – which could be hours later. Just like the bleed, this is something that undoubtedly happens at like 4am, so I use the skills I picked up from watching Big Daddy; newspapers clean up everything until the morning.
7. Boot and rally. Typically college freshmen are the ones trying to master this skill when they are at a party for the first time and don’t want to leave. Sadly, this isn’t something I have been able to outgrow since that time in my life. I’ll have you know that this is not very fun, especially after a night attached to a feeding tube. You try swallowing half a cup of pseudomonas and not throw up; it’s a real challenge.
8. Salting. Sometimes we don’t even sweat – we just salt. There is no liquid involved whatsoever, just salt. My dogs love when that happens.
9. Uncontrollable laughter. This is actually a good thing, but it definitely goes under the idiotic category. A friend of mine, Klyn, talks about this in one of her most recent blogs (https://mylifematters508.wordpress.com/2015/09/04/mylifematters-the-movement-continues/), so I wanted to include it. My sister also loves saying that there is nothing better than when someone with CF laughs. Basically it’s just a mixture of laughing, coughing and gagging, which OBVIOUSLY leads to more laughing, because for some reason it just sounds hilarious. Tell me a joke, I’ll show you how funny it is with the amount of sh*t I cough up.
10. Side effects. You know when you’re watching TV with the entire family and then all of a sudden a Viagra or Cialis commercial comes on making everyone in the room feel super awkward? Well at the end of the commercial, they list the side effects of the drug, like if an erection lasts longer than four hours, it’s time to have an even more awkward encounter with the doctor… or something like that. Those things do happen. I’ve never taken Viagra, so I can’t speak to that drug specifically, but I can tell you that I’ve had to take some weird stuff over the years and have dealt with some really strange moments. While the drugs definitely do work (don’t you dare try and convince me that some herb grown in Cambodia is a natural remedy for CF if I rub it all over my body in the shower – grow up), there sometimes can be a price to pay. For example, a drug once made me turn totally red. Another made me turn orange. One totally crazed drug took away my ability to taste things and walk in a straight line – it definitely killed a lot of the bad bacteria, though.
11. Allergic reactions. It’s all fun and games until I go to run an IV med only to feel like a million mosquitos suddenly bit me all at the same time.
12. When mixing meds goes wrong. I cannot tell you how many times I’ve accidentally stuck myself with a syringe mixing medicine. If my life were a real-life portrayal of the movie Outbreak, I would have accidentally given myself that crazy disease within the first five minutes. I wouldn’t have even made it to the credits. I guess I don’t have steady hands. That sh*t hurts too.
13. When a stranger thinks you’re trying to recreate Breaking Bad. This happens more than it should. The best example I have is this: I was in my room mixing IV meds one day my senior year of college in a totally sterile environment. Extra precautions. I had to do it in the common area because I had a better table to work with. I was masked and gloved, and I made my roommates do the same. Aside from the 4 million packets of alcohol wipes, I had 8 syringes on the table, along with eight vials of sterile water, 4 vials of (powdered medicine?) and 8 self-pumping IV bags. To me, everything looked totally organized. To the casual onlooker, it probably looked like I was attempting to create an illegal substance made famous by a show on AMC. One of my roommates neglected to mention that a guy from his class was coming over to study for an exam. Long story short, the kid walked in and hasn’t been the same since. He looked like he had just seen a ghost and said that he wanted no part in what was going on in the room, so he just left. You can call me Walter White.
Here’s the moral of the story, so much dumb sh*t can happen day in and day out with CF. Sometimes I just have to be able to laugh at myself, that’s probably the best part of living with a chronic illness.
Category:general -- posted at: 8:49am EST
Wed, 2 September 2015
What’s in it for us? Why do we live this life? Why do we do it, and maybe more importantly, how do we do it?
The complexities in the answers to these questions could certainly fill the pages of an entire book, but since this is a blog, and since you’re undoubtedly cutting into your workday to read this, I’ll just scratch the surface.
Life with a chronic illness is not a glamorous one. The “lows” can be very low; frustration and stress often lead to anxiety; overthinking can be a prison of itself; pain may be temporary, but the experiences leave scarred memories that last a lifetime. Why do we do it? Why do we, people with CF, battle every single thing that comes our way, just to turn around and see ourselves facing another daunting challenge?
Adversity can be met at any step along the way, at any given time – football taught me that. Until I was in 9th grade, I can definitely say that I took just about everything for granted. Although, I definitely think I had a grasp on the value of hard work and matured much faster than most of my peers, I don’t think I fully understood the challenges that where ahead of me until I got to that point in my life. Football is unique from any sport simply because at any given point adversity can strike. It’s the only sport where someone volunteers to put his body in harm’s way at every moment of every practice or game as a form of fun.
Football taught me that the reward for overcoming adversity is more adversity. As an innocent little 9th grader, I didn’t have the moral compass to comprehend all that CF was doing to my body day in and day out. That all changed once my football “career” ended after my senior year. On the football field, things happen at an entirely different speed. It is the microscope that shows the development of a young boy to a matured man. I came away from the sport with an understanding of the long uphill road that lay ahead for me. I’m not saying that I wouldn’t have discovered that CF is a vicious thing without football, that’s not it at all. I’m saying that football gave me a sense of heartfelt purpose to overcome the relentless challenges I faced during practice and maturity – like conditioning drills, fighting through illness, understanding plays and tactics, how to protect myself or any number of problems. A football player gets his motivation from his desire to compete and get better.
Where does the motivation come from for a person facing a chronic illness? For many people, a good night’s sleep is a chance to recharge and start over fresh the next day. For me, and the thousands like me, sleep never brings that feeling. When I go to sleep I hook myself up to a feeding tube and fade into fantasy dreamland. My dreams are an escape from my daily life – a chance to live freely.
It’s a catch 22, though; falling asleep only brings the inevitable – the next morning. Mornings are often the worst for someone with CF. Our lungs aren’t hydrated or filtered throughout the night. Mucus builds up giving us the sensation of, well, suffocating – the first challenge of the day. Responsibilities snap in the moment I open my eyes. Is everything working properly? Are all systems go? Where is my pain threshold? Does everything feel normal or worse? In fact, I can tell you that most of the time I won’t feel quite as well as I did the day before until the afternoon rolls around. Needless to say, I’m not much of a morning person. From an outside perspective looking in, it begs the question, “how can anyone live in a reality like that?” because, that’s exactly what it is, a reality.
The will to live is the most basic of human instincts – that’s the easy answer to this question – but what I am trying to explore is larger than that. If it ended simply with the will to live, I don’t think I would have made it very far. I can tell you that sensations of pride and utter success that come along with the fight to survive are pretty unique feelings.
If we look at Darwin’s theory of Natural Selection, what does his explanation of evolution show us? My life, in the end, is one not worth living. CF dies out along with its sufferers on the path of human evolution. Quite Frankly, I use Darwin and his counterpart Herbert Spencer’s Survival of the Fittest papers to wipe my a** when I get out of bed to perform my morning glory. If that isn’t motivation enough, I don’t know what is.
In all honesty, as much as I love sticking it to the man (that man being Darwin), that’s not my only reason for treading down the path of success. Every single great moment that I have had in my life shows me that there are more great moments in my future. My deepest form of motivation is when I choose to give myself the opportunity to live those moments. The pride that I find in that is the purest emotion I feel, deeper than my will to live.
So, why do we do it? I think you need to answer that for yourself, but somewhere, inside you there is a pride that burns so hot that it needs to express itself. We all want something, we all need something – it’s just a matter of making those things happen. I’ve always said that there is no such thing as luck. We make our own luck. The opportunities we give to ourselves are what create the moments that allow our pride to really shine. If you find yourself searching for your “why,” then why not search for your desire to feel pride in something. Make slow changes in your life until you grab ahold of that same feeling you had the last time you made a great memory for yourself.
Every single memory we make for ourselves defines our personality. It is the great ones that drive our sense of pride we have in the will to live, the will to survive against any adversity that steps in front of us.
Category:general -- posted at: 10:57am EST
Wed, 19 August 2015
I got a pretty interesting email (not saying that every email I get isn’t interesting!!) from Nicole, 28 with CF, the other day. It was somewhat of a response to my last Ask Gunnar blog (http://gunnaresiason.com/ask-gunnar-5), and specifically the question I received about dating. The gist of her email was that after a bad break up she entered the world of online dating. On her profile, she decided to “lay it all out there” as she says. She let all potential suitors know about her CF and everything that she deals with on a daily basis. She noted that over time her ex-boyfriend had a really tough time dealing with her daily medical needs and treatments, so this approach was a way of sorting through that. Nicole said that she received all kinds of matches and messages that were both positive and negative until one day she found someone who she thought was perfect. They now live together and will be getting married next year. Nicole, I wish you all the luck in the world with your next step in life!
Before we go on, I really want to point out that I’m not over here frantically looking for a girlfriend or a future Mrs. Esiason. My time will come – I realize that. I’m just chilling.
So, this got me to thinking – what if Nicole’s method really is the best way to go about finding “the one.” I cranked up the old Tinder app since I love doing funny and outside-of-the-box things at the expense of myself for blog content. After a year of running this thing, you would not believe the ideas that cross my mind for UNIQUE content.
For the past week or so, I decided to test this “method” with Tinder and Bumble. I wanted to see how many girls would actually “match” and then have a conversation with me, given the public knowledge that I have CF. I assume that 99% of you know what Tinder is, but for the 1% of you that have been living under a rock and have no clue what this thing is, I am going to give you a quick rundown, because I’m super reader friendly.
Bumble and Tinder are very similar and are designed for singles (or I guess people who aren’t single and are the kind of assholes who are into that type of thing) to meet other people and make the fireworks happen. You are given space to upload five or six pictures and then enter a little bio about yourself if you so choose. Each app uses your phone’s location and then connects you with nearby people who have also downloaded either app. You then “swipe” right on someone’s profile if you think the other person’s pictures are attractive or I guess if the bio, composed of less than 300 characters, is witty. If you don’t think either of the above is true, you swipe left, for a “no,” and move on to the next person. There’s no limit on the number of people you can view or swipe in either direction.
Basically this is the most superficial thing in the world.
The catch is that neither you nor the other person knows if anyone has swiped right or left unless there is a match, meaning both people have “liked” each other. Tinder has been around since I was in college, while Bumble is relatively new (there are a bunch of other apps that all do essentially the same thing as well). The difference between the two is that if you are using Bumble the girl must initiate a conversation when there’s a match, whereas anyone can talk first with Tinder. I can honestly say that I would have never thought I’d find myself writing out how to use these things, but, hey, here I am.
Let me first answer a few questions that I know every single one of you undoubtedly has:
1. No, I do not think I will ever find true love on Tinder, I think it’s dumb.
2. Yes, I think these things are very creepy since you are given no information about the other person except for age, college, place of work, general location, a few pictures and a brief bio.
3. Yes, I judge myself for having used these things.
4. Yes, I have been on a Tinder date, but not in a few years. Everyone used it in college get over it.
5. Yes, people shockingly use these things in real life because they have forgotten how to talk to someone at a bar, concert, etc…
6. Yes, it’s a fantastic way to kill time.
To put things a little more into perspective – in an attempt to find out how stupid people really are, I once bet a friend of mine (we’ll call him swipe-right-Craig) five whole dollars, yes American dollars, that I could get a girl’s number off Tinder using only Blink-182 song lyrics. It was very reassuring to learn that not everyone in the New York metro area is actually that dumb. With that being said, you would be surprised by how many people were unknowingly invested in a conversation with me while I was spitting out lyrics from All The Small Things. It’s amazing how bored you can get at a hockey rink in between practices to think of doing something that dumb. Also, to answer your question that you undoubtedly have here: No, I had zero intention of carrying on any sort of conversation after scoring a number using lyrics… come on. Either way, the people who actually responded to me during that little ploy are a pretty good representation of the kind of people using Tinder. “That’s all I have to say about that.”
As for my little CF experiment… I had never before in my bio included that I have CF. This probably goes back to the point that I firmly believe people see me in a way beyond that of someone with CF, but as Nicole pointed out in her email, and as I have experienced, some people just can’t handle it, which in fairness is understandable – some people just suck.
When it comes to the dating apps, I’m not going to sit here and tell you that I match every single girl out there because I have looks comparable to that of Brad Pitt, because it’s simply not sure. I may look like Brad Pitt (from a really particular angle), but I don’t match every soul out there. I have gotten my fair share of matches in the past, because, well obviously I had to try out my Blink-182 thing.
Last week, I first tried matching people without adding the fact that I had CF in my bio. That didn’t seem to be a problem. Either I was on a hot streak or people really loved my American flag hoodie in one of the pictures. A bunch of girls even messaged me (OMG I KNOW RIGHT?!) on Bumble, but since I wasn’t really into it for the true reason the app was developed, I just let the conversation die down, and that was it. No, I did not keep actual statistics on the number of people that I matched with during this part of the test. Like I’ve said a million times before, I am no scientist.
After a few days, I changed my bio to include the fact that I have “a genetic lung disease.” I wasn’t confident that the average person would know what CF is, so I wrote the next best thing with the intention of explain what CF is (like I would normally do) if the question came up in conversation after a match. I also added my least favorite fact in the whole world, the life expectancy from when I was born in 1991.
In 7 days, I have gotten 0 matches on Bumble and 2 on Tinder, but no conversation has come from either of the matches. I was even “unmatched” by one person (ouch).
Basically, there was enough of a difference to notice.
I AM NOT ASKING FOR A PITY PARTY. I was fairly confident that this would be the result before beginning since the apps are totally superficial. Also, with all due respect to the email I received, this really isn’t my thing, but it was still fun to do, and like I said anything could be blog content, if you put your mind to it.
You can draw whatever conclusion your heart desires, but first I have to concede that this was in no way, whatsoever, scientific or controlled. It was a random sample pool and well, maybe I was on a cold streak. There is nothing more random than the next profile that comes across Tinder.
It does go without saying that it could perhaps be worth considering the little addition to my bio was a turn-off for some people. There’s no way of knowing how many people actually read my bio, nor does it confirm that my bio was the reason people were left-swiping me.
It is an interesting thought. Are people afraid of something they perceive as an imperfection?
Forever swiping right…. As for me, I’ll meet Mrs. Esiason the old fashioned way, like by messaging her on Twitter or Instagram or something.
Remember, you can subscribe to my blog at the bottom of the page!
My reading list lately:
The Great Gatsby – F. Scott Fitzgerald
Tender is the Night – F. Scott Fitzgerald
All Quiet on the Western Front - Erich Maria Remarque
Category:general -- posted at: 10:07am EST
Tue, 11 August 2015
This is the final episode of the Own Your Feeding Tube video podcast series. Here, you will see how the feeding tube has helped me immensely over the past 4 years. I have gained about 30 pounds, and to be honest with you, it has opened some doors that I hadn’t thought twice about prior to the feeding tube’s placement. The energy that the extra nutrition gives me is nothing short of remarkable. Between the feeding tube and normal eating, I try to take in about 5000 calories in a day – unlike Michael Phelps, I don’t have the appetite of a racehorse. I truly think my feeding tube has exceeded my expectations.
This video podcast/vodcast was made possible through an unrestricted educational grant from Nestle Health Science.
Category:general -- posted at: 9:20am EST
Tue, 4 August 2015
**Please be advised: do not consider anything in this blog official medical advice. Medical advice can only be given by a certified medical physician. The contributors on this blog may not be held responsible for any damage that may result from using the information in this blog without permission from a medical doctor.
I was overwhelmed with all the emails and notes I received after my last blog post about 15 things you shouldn’t say to someone with CF (http://gunnaresiason.com/dont-say-that-to-me).
It’s a pretty cool feeling to know that people are actually reading what I am putting out there, so thanks for all the feedback! The emails were all over the map. A lot of them were questions or comments about why I let people lick me from time to time. Others shared hated questions that I didn’t list in my last post. To be honest, as I was writing a few weeks ago, I quickly realized the list could go on forever, but forever is a long time, and I had a few others things I wanted to do that day – most of them didn’t include sitting in front of my computer for hours upon hours.
Also, real quick – A big shout out to my haters, specifically the ones who have a problem with my language choices. I’m 24 years old, I watch a lot of Family Guy and I like to tell it how it is. I’m going to say a bad word if I want to.
So, here we go, we’ll another installment Ask Gunnar (honestly, if you have a better idea for this portion of my blog, please let me know, I am looking for a better title). I have to cut into these emails somehow.
The First Question comes from Lindsay. She saw my blog about dating (http://gunnaresiason.com/will-you-go-out-with-me) – you know the one with the picture of Paris Hilton and me? Anyways, Lindsay, who is almost 30, is post double-lung transplant and asks “I am almost 30 and had a serious boyfriend for 5 years but he left this past winter. I want to get back into the dating world but am nervous too for many reasons. As you know most CF patients have a complicated medical background. I met my first boyfriend at a bar and we met for dinner a week later. Here I told him everything on the first date - the CF, the double lung transplant, the diabetes. He stayed around for 5 years until he said it was too much. I guess I am wondering what you and/or others think about when to tell someone you are dating or going to be dating about [your case with CF].”
Well that guy sounds like a real asshole if you ask me. I think the major challenge that a lot of people with CF face is that finding a person in the significant other category can be a real challenge at times, because that person is going to have to be willing to make enormous sacrifices. It sounds like your ex-boyfriend was not that kind of guy. If you watch enough Dr. Phil (I don’t watch Dr. Phil at all), I am sure he will say that relationships are built around sacrifices and trust. Trusting someone is not easy and willing to make large changes in life may not be any easier. In my personal experience, I like to be upfront with the lucky girl that gets to go on a date with me. The nasty cough, tons of pills and appearance of my feeding tube are not the easiest things in the world to hide, so I just lay it all out there. I’ve seen people cower in fear when I’ve done that, but I have also seen people take a genuine interest in everything that goes on in my life. I think it’s really kind of a trial and error thing.
With that being said, your boy over here can’t seem to hang on to a winner for longer than a few months, so whatever I am doing may or may not be working. (We’re getting really deep here) I think the real challenge for me is that people kind of want to live the wild and crazy lifestyle of a New York City young-professional, or “Yo-Pro’s” as the kids say these days. Sadly, that’s just not in the cards for me. Finding a person who has the backbone to make significant scarifies and the emotional strength to deal with something as heavy as cystic fibrosis is not an easy task, but the only way to find out if that person is willing to try is by letting him, or her, in on the big secret.
The next question comes directly from my last blog post, specifically the point about vaccinations. Linda, who is the aunt of a 10 year old with CF, asks, “Why are [vaccinations] important to you?”
I can only answer this question from my own experiences and what I have learned through conversations with other people who have CF. I was vaccinated as an infant and get the flu shot every year. I also got the Bird Flu shot while I was in college. I ain’t got no time for the Bird Flu, and neither do you. Seriously, though, if you want to know what real misery is, ask someone with CF what it’s like to have the flu also on top of the hideousness that is cystic fibrosis. Fortunately, I have never gone down that path (knock on wood), but I know a few who have and I don’t think I have the words to describe what that seems like.
While I was in college, I made sure my roommates were vaccinated as well. For example, while the flu shot protected them, I also felt a sense of relief that we were somewhat protected from the virus making an unwanted entry into our room. I have enough on my plate with CF, I give my immune system more than it can handle on a daily basis. I realize there may be a lot of negative talk about vaccines out there, but what can I say? They seem to help me. Science.
The third question comes from Tom in Boston. Tom’s connection to CF stems from meeting me at BC club hockey tryouts. I came across the middle to get a pass with my head down and he dropped me pretty hard. Needless to say, we both got cut from the team. We’ve been friends ever since and now he dates one of my best friends…. Anyway, his email asks, “What are your thoughts on deflate gate?”
It’s a sad time to be a Boston sports fan, isn’t it? The glory years of all the championships are coming to an end. The Red Sox are in crisis-mode, the Bruins are not going to be any good this year and the Pats are in trouble without their main man, Tom Brady, for four games. (I know nothing about the Celtics, or the NBA for that matter, but since they don’t have LeBron, I am willing to say their chances are slim.) Boston has had 9 championships from 2000-2015, most of any sports market in the major professional sports. Business Insider and my ability to count to 9 are my sources here. Business Insider actually chooses to include MLS championships and claims that the LA area has won the most major sports championships (14) because of the Galaxy, but come on, let’s get real here. Soccer is about as American as Freedom Fries are European. Get out of here with that nonsense. Soccer was fun to play when we were all five years old and learning how to run, beyond that it’s about as entertaining as watching paint dry.
That’s neither here nor there. Do I think TB12 is probably, maybe, just a little bit, perhaps guilty as that big investigation points out? Yeah, he and the Patriots cheated. Rules are rules and he, along with some help, circumvented them. You can’t deflate balls. I don’t care how big (or little) you like your balls. All the balls need to be a certain size and his balls weren’t that size, so tough luck. In reality, though, his biggest crime is his ability to write really long Facebook posts. No one likes seeing a novel of a Facebook status about the state of the world. Learn from Tom Brady’s mistakes and don’t be one of those people who write convoluted Facebook statuses that take forever to read, for the love of God!!!!!
With that being said, do I think Deflate Gate will really prevent him from going down in the history books as the best quarterback who has ever played? No, I don’t think it will. He’s an awesome player, his wife is a babe and he wins championships. What a life he has. This was just a little hiccup and after his four-game suspension, hopefully all will be back to normal in Foxboro. Maybe then we can move past it just like Mark McGuire’s steroid use, or…..
The final question comes from Joey and Jessica, the parents of an 8-year-old boy with CF who is starting up tackle football in the fall. They ask, “What recommendations or suggestions do you have? We are concerned about germs from the mouthpiece.”
Well first off, awesome job by you guys for letting him get involved in sports at a young age, there’s nothing better for a young kid with CF than playing sports. Get those lungs pumping.
As for any recommendations I have, well let’s tackle that question about the mouthpiece first. Wash and rinse that thing every day. Just stick it in a little cup of Listerine or wash it with the rest of his Neb-T’s, that’s what I used to do. You should also throw his practice uniform in the laundry after practice as well. Really, just do your best to keep everything clean. There is an antimicrobial spray for pads that you can buy. I recently put that stuff on all my hockey gear. Who knows if it works, but I did it anyways. A Google search will yield an answer for you there.
You also have to make sure you clean any cuts he may get. Those don’t need to get infected, but beyond that just make sure he’s having fun and he’s committed to the team. Make him carry his own equipment to and from practice. That will pay dividends in the long run. I hated seeing my little hockey players this past winter walk into practice only to be followed by their parents carrying the big hockey bag. That will help teach discipline and respect for the sport. Enjoy the season, and good luck.
My top ten favorite movies of all time in no particular order:
Top Gun ------- definitely my favorite by far
Saving Private Ryan
That Awkward Moment
Friday Night Lights
All 6 installments of Star Wars
Category:general -- posted at: 11:24am EST
Tue, 28 July 2015
The fourth episode of the Own Your Feeding Tube video podcast series discusses some of the social questions that tube feeders, or potential tube feeders, may have when it comes to a new feeding tube. Obviously, it’s a pretty noticeable device. I think the social hurdle was really the biggest one that I had to overcome. With that being said, once I realized the benefits of the feeding tube, especially in my life, it was an easy hurdle to get passed. Here, the message is that I really want you to own it. What is it? The feeding tube. If the feeding helping make your life easier, then don’t worry about what it looks like. You never know where it will lead you.
This video podcast/vodcast was made possible through an unrestricted educational grant from Nestle Health Science.
Category:general -- posted at: 2:32pm EST
Thu, 23 July 2015
This blog post touches on the invisible disease side of things. I know I went pretty deeply into that with my little story about almost getting tazed on an airplane ride from Boston to New York (http://gunnaresiason.com/i-hate-the-color-purple), but this is a little bit of a different take on the subject.
I recently saw an article online (http://www.cosmopolitan.com/sex-love/advice/a7212/things-not-to-say-to-a-non-drinker/) about a few things you should never say to some who doesn’t care for drinking. For the record, I don’t actually read Cosmopolitan, but Blake Lively is super hot and I think that picture of her is why I found myself on the website. I will say, though, it’s amazing what you find yourself clicking on when you go through your twitter feed (follow me @G17Esiason BY THE WAY). Either way, I thought it was kind of witty and gave me a good laugh, but more importantly, the article made a pretty good point – there are a bunch of things that are off limits when it comes to talking to someone who chooses not to drink.
I want to write about a few things you probably shouldn’t say to someone with CF, unless of course you are looking for a fight. Don’t fight anyone. That’s dumb.
As a side note here, I am speaking to pretty specific “you.” Personally, I love when people ask me about my disease, because I think some people are actually looking for legitimate answers. I am obviously pretty comfortable talking about my little health issue, but really, conversation about CF gives me a chance to educate anyone asking about it, and beyond that, it only furthers awareness for the disease. On the other hand, though, I don’t love when people make stupid little remarks behind my back. The kind of person that casually knows me, but doesn’t quite have a full understanding of what I go through on a daily basis and to be completely honest, the kind of person who doesn’t really care. From my little airplane incident, I think you should be able to tell that I can flip the switch and go into Hulk-mode if needed. So here we go, 15 things you probably shouldn’t say to someone with CF… if you don’t really know what you’re talking about.
1. Why the hell does your breath stink? Come on, man. Do you actually think the sh*t in my lungs doesn’t have a smell. Guess what – I can taste it too and it doesn’t quite have the same flavor as mint-chip ice cream. I promise you I brushed my teeth today. I hate going to the dentist, so I brush those bad boys 3 times a day, and the smell still won’t go away.
2. You’re looking a little skinny these days, huh? Yes, you’re right, thank you captain obvious. That little mushy thing inside my body called a pancreas doesn’t work so well all the time. Food goes right through me sometimes. Yup, there’s a good mental picture for you.
3. You hardly ate anything! I know. I know. Listen, I don’t want to be wasteful. I try my hardest not to be, but nausea can come on real fast. All the bacteria in the lungs – totally not meant to go into the stomach. You can do the math here.
4. You have alien fingers and toes! Actually, I kind of think this one is a sort of funny and I totally embrace it, but it is a sensitive point for some people, which I completely understand. I love my little (they are actually pretty big. You know what they say about big hands?) alien fingers. I also have the world’s biggest toes. If you tell me that you know someone with toes bigger than mine, then I call you a liar. Science calls my alien fingers and toes “clubbing.” That happens when a limited amount of oxygen gets to the extremities, and as a result my fingers and toes are curvy. Science. Head, shoulders, knees and toes, knees and toes.
5. Did you just destroy that bathroom? LOL. I may have. Remember that point about the pancreas. Well, here’s the deal, fat sort of smells, and when it doesn’t get digested properly and goes right through me, things like that happen.
6. Would you cover your mouth when you cough, please? I’m trying my hardest, people! You try making a move to your mouth 300 times in a single day. Oh, by the way, I promise you won’t get sick. In fact, I pinky swear.
7. Wow that sunburn, just wow. Yeah, I know I can feel it. You don’t have to tell me twice. Remember my summer tips from a few weeks ago (http://gunnaresiason.com/summer-tips)? Those antibiotics and the sun don’t mix. I sure as hell take enough of them.
8. The surgical mask on the subway, really? I don’t know how many times I have to write about this, but this little issue is really a never ending up hill battle. I mean, I’m not even going to link to the other stories in my blog about this, it’s mentioned in every freakin post. People are just so damn judgmental about surgical masks in public. The outcry is nearly as bad as the selfie stick phenomenon. Don’t use a selfie stick in public – don’t be that person. The flu and CF don’t mix. Hopefully the conversation about this ends here.
9. You want me to get vaccinated? I have never gotten the flu shot or any of those things. Get to the doctor and get your ass vaccinated. Since we are talking about the flu again, let’s just set the record straight – I don’t need the Measles either. I get poked about 9 million times a year, give or take – you can do it once for a vaccination. You aren’t bigger than the rest of the population; you’re actually helping other people out by getting it done. Don’t be selfish.
10. Are you really going to park in the handicapped spot? You know, there are people who are actually handicapped, right? You’re an asshole if you say this to me. Don’t be an asshole.
11. What happens if you don’t do your treatments or take all those pills? Are you serious? I, uh, die….
12. Do you still have that cold from [the last time I saw you]? Ugh, yes, I still have that cold. I’ve had it for 24 years.
13. You’re having a bowl of ice cream for breakfast? Yeah, it’s coffee ice cream, my favorite! You have coffee in the morning too, don’t you? See, we in the CF community actually need fatty foods, really just about whenever we can get them. What better than ice cream? SHOW ME A CHILD THAT DOESN’T LIKE ICE CREAM! Best childhood ever, right here. Can’t you tell? I’m so lovable and sweet. (For those of you keeping score at home, that was a pun – ice cream is sweet and everyone LOVES ice cream. Come on, you’re better than that)
14. Can I… like, lick you? Okay, this has actually happened to me, more than once oddly enough. While it may seem like a gross thing or something you may stumble upon after a weird Google search, but on the scale of grossness, it’s somewhere near the bottom. As soon as people put together the whole salt thing associated with the disease, it’s like people actually want to give it a try. They want to test it for themselves… or something along those lines, I’m not quite sure why. “Nah, you’re lying! You don’t have CF, your skin isn’t salty!!!!” But, like some of the other things in the list, this one can be a real knee slapper when I go along with it and someone actually ends up licking my arm to taste the salt. What’d you think, I was gunna let them lick my face or something – wrong website. Without fail, there is ALWAYS a “holy sh*t” moment when the person does realize that I do, in fact, taste salty. I’m best served medium-well… just for future reference.
15. How do you live like this? It’s everyday life, that’s how. There are different ways to handle some of these things. You can take the France approach and just let people roll right over you, or you can take the America path and unleash the fury. There are times when either option is acceptable, but personally I love the American way of answering some of these questions… it usually makes for a pretty good laugh in the end. Like Russell Crowe says in Gladiator, “Unleash hell.” Seriously, though, I think it’s important to be able to laugh at ourselves in some of these situations, because in the end, if we can’t laugh at ourselves when it comes to these idiotic things that we go through, than what the hell are we fighting for anyways?
Here’s my reading list lately!!
Band of Brothers – Stephen E. Ambrose
Killing Jesus – Bill O’Reilly and Martin Dugard
Black Hawk Down – Mark Bowden
Category:general -- posted at: 10:00am EST