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Syndication


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: 6:32 PM

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: 2:00 PM

In the third episode of the Own Your Feeding Tube video podcast series, you will see how I have been able to maintain my physically active lifestyle. Prior to getting my feeding tube placed, I had a fear that my life would change drastically. It did, but for the better. My health drastically improved, plus I saw my energy and activity level sky rocket. I was in the gym and on the ice only 6 weeks after surgery. While the feeding tube does require a little extra work outside of the realm of normal cystic fibrosis responsibilities, I am more than willing to give a little hard work for such incredible gains.

This video podcast/vodcast was made possible through an unrestricted educational grant from Nestle Health Science.

Category:general -- posted at: 3:59 PM

**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.

It has been a little while since my last installment of “Ask Gunnar,” so I wanted to get ahead of the curve and answer some of these emails before they begin piling up on me. I want to thank everyone for seeking advice from me, a 24-year-old dude who barely passed art class in high school, then had an equally tough of a time with astronomy in college; you couldn’t have come to a better spot!

The first question comes from Shawn, the father of a 14-year-old with CF. “Throughout [my son’s] life we have provided him with information that we felt was appropriate for his age; however, he is gaining more knowledge, a lot which can be hard for a young kid. What advice can you offer and what can be helpful at this age?”

Shawn, I think this is a pretty tricky subject. It’s no secret that there is a very dark side to cystic fibrosis and a lot of that is available on the Internet. The Internet can be a scary place – specifically cystic fibrosis Facebook communities and groups. I do my best to stay away from these places as an unbelievable amount of negativity spreads from them. This is not to say that all of these groups and forums are bad, but some are, he will have to be careful. I have a pure hatred for Facebook because of that. Beyond that, a simple Google or Wikipedia search for “cystic fibrosis” will not lead to the most appealing web pages. Somewhere along the line during my high school years I decided I would do such a search. Next thing I knew, I was on WebMD diagnosing myself with 15 different illnesses.

That was a tough night. Unfortunately, as he grows older there will be moments in his life when he is going to be facing enormous challenges. We all handle them in our own ways, but it is your responsibility as a parent to prepare him as best you can for such a moment. I remember the first time I coughed up blood as a 15-year-old, it scared the sh*t out of me. I have since learned that 99% of the time it isn’t such a huge deal – it can and does happen. My biggest fear with that nowadays is how awful it tastes. Personally, I am at a stage in my life where I can be pretty candid with my parents about the realities of CF. It’s not like it is always a topic of conversation at the dinner table, but we all know the uphill battle we face. I think for an adolescent boy, there are certain subjects that are age appropriate conversations, for example the reproduction issue. That might be something that is a few years off and doesn’t need to be covered right this second. You will need to walk that very fine line with him about the realities of the disease. While some of those realities can be quite the burden, it is also beyond important to reassure him with hope. The cystic fibrosis community is on the verge of something great – something that will change his life and is going to be an incredible advance for his generation. He will need to learn how to balance his life, manage his time, continue to be an athlete and, above all, live a fulfilling life. It does not surprise me that many people with CF possess a level of courage that so many healthy people wish they could have. Your son will reflect that courage, and with it, he will be able to face anything that stands in his way.

The second question comes form Melissa, the mom of a 7-year-old little boy with CF. “My 7 year old son has CF and my question is how your parents handled overnight invites from friends. Did they allow you to go? Did they come over before bedtime to help you with your treatments? Were there any issues that came up in terms of that over the years?”

Well, I can tell you one thing – I survived four years at camp college (BC) and I think I turned out all right. I did not live inside a bubble. I was allowed to have sleepovers as a kid. In fact, every Friday night in 3rd or 4th grade (I think that was the timeframe), my buddy Jeremy and I would do overnights either at his house or mine. Admittedly, at first I was scared to leave home – I was a total momma’s boy (and still definitely am). Once I got over that fear, it was totally fine. Jeremy had a PlayStation, I only had Sega – I preferred his house by that point. I did my treatments and nebs at his house while we played video games or something. Keep in mind, these were the days before the Vest or Frequencer, so I would use my Flutter and everything was gravy. That little thing was much easier to travel with. Looking back, I can totally see how my parents probably definitely told his parents what treatments I needed to do and how I needed to do them. Remember, the only thing that makes fighting CF worthwhile is if he gets the chance to actually live his life.

The third question comes from Max. He has no ties to CF whatsoever, except for the fact that I reluctantly agreed to let him play on my intramural hockey team at BC. He asked me 6 million different times if he could try the Vest on because “it looked fun.” Max’s question is “What are you thoughts on Day-Light Savings?”

Thanks for the email, Max. Never change. It’s funny you bring that up because I do feel somewhat passionately about the subject. Why does Day-Light Savings even exist? Personally, I love the fall-back version of the day, while I hate the spring-forward variety when it comes to my sleep schedule. With that being said, when it comes to the actual hours of sunlight, I feel like the flip-flopper himself, John Kerry, and totally reverse my opinion on the matter. I would have to guess it greatly impacts farming communities because their days are based on solar-time. Is that right or am I just making that up? Let’s ask the Internet. Wikipedia says I’m right. We’ll go with it. Honestly, Max, since I am not running around with a pitchfork or attempting to turn a crop, I can’t say that my day is impacted very much by the change in sunlight hours. What I can tell you, however, is that for the two or three days immediately succeeding the bi-annual Day-Light Savings event, I can never seem to figure out what time it is. Between my phone, watch, microwave and car, they all seem to say something different.

The next question comes from David, the father to a 12-year-old son with CF. David asks, “We are looking to purchase a portable, battery operated, nebulizer for [our Make-A-Wish] trip and were wondering if you could recommend one! We saw your video with the portable vest and were amazed.”

There are several types of travel nebs on the market. I can’t say one is better than the next since I haven’t tried them all, but I have used PARI and Respironics travel nebs at different points in my life. They both had a car adapter and a battery operated function. The car adapter thing was a great time saver in high school and still is for long road trips or early mornings. Some people even make the case that travel nebs actually work faster than the home style. As for the “portable Vest” you saw me using, it is called the AffloVest. That thing is pretty cool. It’s really easy to use and the mobility is awesome. People have had different experiences with its efficiency, so I can only testify to my own use of it. It seems to get the job done when I am on the move. Keep in mind there may be insurance battles ahead of you as you are trying to get some of these things for your son. Your clinic’s social worker will be a great resource for that!

The final question for this post comes from Maria. She has a son with CF who is about to go off to college. She asks, “When you were 17, what would you say were the most important aspects of having CF that I can share with my son besides the normal day to day treatments? [sic] How was your health with CF at college? Any tips on staying healthy as a college freshman when you have CF? [A question about bacteria colonization and antibiotic use was also asked]”

First, let’s tackle the bacteria question. I am a patient who has been colonized with bacteria. This is not the time or place to share the names of my lovely friends living inside my lungs, but they are there taking this ride with me. So yes, I use inhaled antibiotics every day. They are great. They usually taste the worst.

When it comes to being a successful high school student headed off to college, I think I would tell your son to be as active as possible. High School, especially senior year and the summer following graduation, is a great time in any kid’s life. There are very few responsibilities for them and they get to learn how to interact with their peers in both negative and positive ways. It is a time to be “one of the boys.”

Your son should be transitioning to learn how to care for himself in every possible situation (cleaning nebs, accepting that he doesn’t feel well, learning how to stick to a routine, etc…) so that he is prepared for college life on his own. High school is very regimented. CF kids wake up, do treatments, take pills, eat breakfast, go to school where lunch is provided, play sports after school, come home, do homework, take evening pills, eat dinner, do treatments again, then go to sleep. College is not like that at all. He might have class for 3 hours in a given day. One class could be at 11:00a, the next at 3:00p, then finally 6:30p. When and where is he going to eat or do treatments? What is he going to do during those blocks of time between classes? Schoolwork? Okay. That lasted about a day for me at Boston College. I quickly found out that I wasn’t doing anything fun in the Library. My sister loves to tell people that I only went to the Library when a girl wanted me to go with her. I quickly became like every other student doing homework from 9:00p-1:00a (on a good day). Time management is going to be key. We all (like every college student ever) struggles with that at first. For example, what the hell was I doing my freshman year when we were snowed in for two days up in Boston? We found ways to keep ourselves occupied. We tied a dollar bill to a really thin string and tried to fool people into taking it before pulling it under a door. That lasted about 25 minutes and resulted in a great video. Then we watched a Mighty Ducks Marathon, then played hours of videos games. It got to the point where I found my roommate playing Guitar Hero at 7:00a while sitting 5 inches from the TV. It’s amazing what people do in college when they have time on their hands.

Keeping a routine becomes difficult, but that will be his biggest ally. Treatments immediately after waking up and doing them before going out at night will be the best way to fall into a routine and take care of himself. There is no way around it.

As for my health, well, college is disgusting, so I did the best I could do. I would be lying if I said I feel as great as I did when I was 18, but the experience of living with roommates and being away at school for 4 years is something I would never trade back, for anything.

Category:general -- posted at: 5:03 PM

The second episode of the Own Your Feeding Tube video podcast series will show you how I have had to make a few lifestyle changes after I had my feeding tube placed.

I agree, it can seem like a lot of work and even a little scary at first, but I can honestly tell you that living a full, healthy life with both CF and feeding tube can be done. Here, you will see what I have done to overcome any challenges that a feeding tube may present.

This video podcast/vodcast was made possible through an unrestricted educational grant from Nestle Health Science.

Category:general -- posted at: 1:47 PM

In the first episode of the Own Your Feeding Tube video podcast series, this “How-To” video will show how I am able to use my feeding tube in different situations. I cover two different types of “feeds,” bolus feeds and nocturnal pump feeds. Bolus feeds are quick and easy and can get me as much as 750 calories in just a few minutes. My nocturnal feeds typically run for about 7 hours and give me anywhere from 1500-2500 calories depending on how much formula I use.

I also discuss how the feeding tube system is undergoing a change to the ENfit connector system. The current ENfit transitional set has been introduced and has created many questions for tube feeders. In 2016, feeding tubes and their accompanying pieces will complete the total transition to the ENfit connector system, which is designed to improve patient safety. Hopefully this video can help answer some of those questions.

This video podcast/vodcast was made possible through an unrestricted educational grant from Nestle Health Science.

Category:general -- posted at: 2:06 PM

Well, it’s just about summertime, or at least I hope it is. I guess we can never be too sure. Anyways, I figured now is a better time than any to give you my 7 tips for a hot, hazy and humid summer with CF. Let’s get into it.

Vitamin D

Ah, vitamin D – the stuff that comes from the sun. It’s hard not to open this blog post without everyone’s favorite thing, the sun, so that’s exactly what I am going to do. Like Katy Perry once said, “Daisy dukes, bikinis on top / sun-kissed skin / so hot we’ll melt your popsicle!” getting tan is awesome, and as a dude, how could I not love the bikinis on top. BUT did you know that vitamin D is actually great for lung health? No, you didn’t know? Now you do. That’s right. Studies have shown (http://advances.nutrition.org/content/2/3/244.full) that vitamin D is a key ingredient in keeping the airbags healthy. I don’t want you to think that I’m telling to go out there and get crushed by the sun only to come back looking like Mr. Krabs from Spongebob. I am telling you to get outside and enjoy the fresh air. Remember it’s healthy to do so.

Sunscreen

Before we get ahead of ourselves here, REMEMBER TO USE SUNSCREEN. Melanoma is no laughing matter, and while we are at it, neither are sun burns or skin cancer. Sunscreen can literally be a lifesaver. Beyond that, have you ever noticed on the little antibiotic bottles that the red label warnings sometimes say “avoid sun exposure”? That warning isn’t a lie. I can recall a few times when I was younger that I fell victim to sun poisoning during a course of Cipro. Take it from me, sun poisoning is not fun. During football preseason my senior year of high school, I had it so bad, I basically peeled the skin off my entire nose. So, while I tell you that vitamin D is awesome and being in the sun is great for your lungs, you need to be smart about it.

Hydrating

For those of us with feeding tubes, there really isn’t any excuse here. Your feeding tube acts like a second mouth. Utilize it. I know Pedialyte tastes like garbage, so just dump it right down the feeding tube. You might as well add a little salt to it also – you aren’t going to taste it. For those of you who aren’t lucky enough to have a feeding tube, I guess there is a little bit more work involved in this one. Staying hydrated is incredibly important. For one, it’s essentially a root issue within cystic fibrosis. Our lungs aren’t hydrated properly, so the mucus gets harder to cough up, then it can get stuck and lead to infection. Secondly, we are salt deficient. Replace that stuff. Drink Gatorade, water, Vitamin Water, (or pedialyte if you can stomach it) whatever suits your personal needs (you can add a little salt too), get it done. Don’t get left out, sitting on the bench. This is something you can help control. Monitor your fluid intake, and remember, when in doubt on a hot day, just keep it going – drink! Make sure that pee stays clear. [Also – if you want to know more about how I keep myself hydrated check out my blog post from last year… http://gunnaresiason.com/quenching-a-thirst]

Crushing a few brews

Yeah, I’ll admit it – I’m a sucker for driving the truck out on the beach, lighting up a bonfire and hanging out for a couple hours. Nothing spells America quite like combining horsepower, nature and a good BBQ. Once the sun goes down and the temperature drops, though, it’s game on. Clean up, drive home, change clothes and head to the bar (designate a driver please, don’t be dumb). I realize I am totally contradicting myself with the “staying hydrated” tip, but whatever, it’s life sometimes you have to live it, just remember it’s important to be responsible. If it’s 105 degrees and painfully humid, maybe it’s not the best idea to be drinking, let alone to be outside. If you do choose to drink, however, make the right choice. I choose Budweiser. Not only is it the great American lager, it also has great calories. While the King of Beers may not be on par with the Silver Bullet, “great taste, less filling,” it certainly will help pack on the calories better than any beer I would drink. It’ll fill you up too (don’t funnel Budweiser, bad things will happen). When you wake up the next morning, revert back to the hydration tip. Remember to enjoy life. You’ll survive if you crush a few – I promise.

Pick and choose your battles

I have touched on this one a little throughout this post already, but let’s just remember, I am not Superman, and neither are you. If it is painfully hot, there is no shame in staying inside in the AC. The heat can be deadly especially for people with any chronic illness. You have to be smart about what you can expect of yourself on a super-hot day. This is especially true if you are on IV antibiotics or something that can lead to dehydration. There have been several summer BEF fundraisers in the past that I have chosen not to attend simply because of the heat. As the saying goes, I would rather live to fight another day. I understand, or at least I like to think that I understand, what I am dealing with. It is important to know how far to push yourself in several situations – the heat is not an exception.

Salt Air

I can’t say whether this one is true or not, but I like it, so I’m going to take the ball and run with it. As the story, or myth, or whatever you want to call it goes, the hypertonic saline treatment came from CF surfers in Australia. If that is actually true, that is freaking awesome. Why would they be in a position to discover it, or realize that surfing is helpful? The salt air. The salt air, much like HyperSal, moistens the mucus in our lungs triggering coughs.  Coughs help clear the mucus, destroy plugs and allow us to breathe easier, so get your a** down to the beach. I am not telling you to suddenly turn into SI swimsuit girl and professional surfer Alana Blanchard, but I am saying that I am a believer that this actually works. With that being said, if you do want to turn into her, go for it. For the record I do not surf. I am terrified of sharks. Seriously, though, I cannot be certain, but I do feel like I am a healthier person during the summer months. That could be a result of a million different things, but I like to think that the salty beach air helps. I hope it helps you too.

Have Fun

It’s corny, I know, but I am going to say it anyways. Remember, life isn’t all about work and stressing out over little things. You are bigger than your disease or whatever else you have going on in your life. You have the freedom to do whatever you want, as long as you take care of yourself. You make your own luck, just like you present yourself with your own new challenges and opportunities. Take a trip, make a few mistakes, create some memories – get yourself involved. There’s nothing worse than watching life go on without you. Make sure you get on board the train when it leaves.

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I am planning on writing another Ask Gunnar blog soon, but I want to keep it unique, so keep emailing those awesome questions, but please for the love of God, ask something new!!!! Take a look at our older Ask Gunnar blogs before you send some questions in. That email is GunnarsBlog@Esiason.org

Also! I have been working on some really great videos and podcasts, be on the lookout for those to drop intermittently along with my weekly blog posts.

YOU CAN NOW SUBSCRIBE TO BLOG UPDATES AT THE BOTTOM ON THE PAGE. CLICK IT – YOU KNOW YOU WANT TO.

My reading list since March:

Friday Night Lights – H.G. Bissinger

Legend – Eric Blehm

Profiles In Courage – John F. Kennedy    

Category:general -- posted at: 2:13 PM

I hate the color purple. It just doesn’t do it for me. What colors other than Red, White and Blue could I love?  

You see, the problem with purple is that it doesn’t look good with anything. I can’t think of one thing that I would eat or drink that is purple either. Wine is technically red, and no I will not eat grapes. [SPEAKING OF GRAPES, SOME GIRL IN VERMONT GOT BIT BY A BLACK WIDOW SPIDER THAT WAS INSIDE A BAG. WTF?!] Grapes are just gross.

Purple is a tough color to wear. Is it warm? Is it cold? Is it a “happy” color or is it “sad”? I have no idea, I had to work really hard not to fail art class.

The only people that willingly wear purple are guys that play for the Minnesota Vikings, or their fans. I hate the Vikings. Go Pack Go. Really, I just hate the color purple. It reminds me of the time Randy Moss caught a touchdown pass and mooned the Lambeau Field crowd in 2005.

Purple, unfortunately, is the color that I am stuck with.

Purple classifies me as a CF patient. It is the color arbitrarily chosen to represent a group of people that are in a common struggle – the struggle to overcome cystic fibrosis. People say this or that about CF awareness month, May, and it seems like there is purple all over the place on social media, but what does that accomplish? How do people become more aware just by seeing the color purple? Is awareness achieved when people blindly donate to the cause or when they understand what a fraction of the world’s population go through on a given day? And that’s just it, a small fraction of the total population suffers from CF. There are fewer people with CF worldwide than the total number of fans that go and watch the Green Bay Packers at Lambeau Field on Sundays. Do people truly understand what we go through? I bet some do, but the real problem is that unless the disease directly impacts someone that you may know, then chances are that you know very little about it. I would even make the argument that most patients and families have no idea what they are up against. I think I have a pretty good handle on it some days, but out of nowhere anything and everything can go wrong. Cystic fibrosis is not a commonly understood thing, and here’s the perfect example.

During my senior year of college, I developed a pretty nasty cough and got sick one way or another, so I needed to be seen by the doctor back in New York. There wasn’t anything special going on, no exams or wild parties, so I figured a weekend home wouldn’t hurt either. I could have driven home no problem, but my parents didn’t want me driving since they weren’t exactly sure how poorly I was feeling, so they put me on an evening Delta shuttle out of Boston. The shuttle, if you have never flown on it, doesn’t go to space, unfortunately, rather it’s an affordable commuter plane for people who frequently have to travel to do business in New York, Boston, DC or Chicago. It’s also pretty convenient for college students who live near airports.

I was in such a rush to get to the airport that I didn’t have time to stop and grab a surgical mask from the drug store. You have to remember, I was in college, so I didn’t just keep things like that on hand like I do now. I got to the airport about 45 minutes before departure and needed to get my ticket, get through security and board. As a result, I had to hustle to the gate with a couple heavy carry-ons, my backpack filled with homework that I was probably (not) going to do over the weekend at home and a bag bursting with essential laundry that was obviously not folded. Looking back, I must have seemed pretty banged up because people were avoiding me in the airport.

By the time I boarded the plane and sat down, I was totally out of breath and was neck deep in a coughing fit. The passengers around me were clearly pretty unsettled by the whole thing. Luckily, I didn’t have anyone sitting next to me, so I didn’t have to deal with that, but I could tell the people in my immediate vicinity, were not happy. It came to the point where the guy in front of me pulled out a bottle of hand sanitizer and said, just loud enough for me to hear, “since we practice good hygiene, let’s all Purell together and stay safe.” First of all, that’s not an exaggeration. He actually said that. I will never forget that. Second, who uses the word “hygiene” in everyday vernacular? No one. What a weirdo.

Even after five or six passengers used this guy’s Purell, it was pretty evident that he still wasn’t happy. He started talking about how someone he knew got the flu because of a passenger that was coughing on the subway, or something to that extent. I couldn’t hear that well because I was sort of listening to my iPod, but had one earphone out just to keep tabs on the whole thing. It was as if he was talking to me, without actually talking to me. He went on and on and on about his buddy with the flu, and by that point, I really was trying to suppress my cough, but it wasn’t working at all. In all honesty, I was just as annoyed with my cough as the people were around me.

After about five minutes (for some reason it took forever for us to depart, who knows why) of him creating allies amongst the passengers on the plane, he finally stood up, walked to my seat and confronted me. He said, “Son, if you don’t cover your mouth and figure out that cough, I am going to have you removed from the airplane, then you’ll be hearing from my lawyer.”

First of all, I was covering my mouth. Let’s get that straight. More importantly, though, I suddenly found myself in a pretty unique situation. To make matters worse, all the passengers had their eyes on me – all his allies. There were about a million different ways I could have handled it, but my first instinct was to stand up and get in his face, so that’s exactly what I did. I stood up and quickly realized that I was towering over him. This guy was feeling all high in mighty in his $5,000 suit when he was standing over my seat, but he was shocked to see that I had about 6 inches and 20 pounds on him, so he took a step back. Just as soon as I started to open my mouth to reply, it suddenly dawned upon me that I didn’t want to say something too stupid and actually get into the type of altercation that would lead to an Air Marshal, who may or may not have been on board, tazing me. Mom definitely would not have been happy with that, so I kindly tried to tell him that he should just sit back down and not try to press me on this.

Instead of listening to me, he kept at it.

I have to imagine that it was probably pretty entertaining for the passengers around us.  Just think about anytime you’ve been in a bar when a fight is about to break out. The intensity is through the roof. I saw enough of those in Boston during the college years to know that this is exactly where we were headed. His face was turning red, his voice was rising and he was a man on a mission. Seriously, who knows where the flight attendants were, it was about to cross the line.

Finally I had to break it to the guy, I said, “I have cystic fibrosis, you’re going to be fine, it’s a normal cough. I can promise you that I am not contagious.” I could have sworn I heard a gasp or two from the audience when I said that. It was my ace in the hole, and I was kind of hoping this whole thing wouldn’t go there, but of course it did, because there are lots of idiots out there.

The passengers were now clearly on my side after that, and it felt like we were waiting forever for him to respond. He finally said something to the effect of, “I don’t care what you have, just be on the lookout for a call from my attorney.”

I mean, the whole thing was beyond stupid. The two people directly across the aisle from me looked like they had just seen a ghost. I just laughed, sat down and put my music back in my ears. I was over it.

I never heard from his attorney.

The moment I landed in New York, I couldn’t wait to tell some of my friends what had happened. I think they were more disappointed in the fact that I was actually back in New York and not needing to be bailed out of some jail inside Logan Airport.

Well, it turns out violence is not always the answer, kids. I did have every right to start swinging, but it struck me that he probably had no idea what I was dealing with. He also probably had no idea what CF was, when I told him. He was in his mid-40s and what; maybe he spent a week learning about it in Biology class in 9th grade, like, what 25 years ago? His biggest concern (other than me coughing) was handing out his business cards and Purell to other passengers.

I will admit, when I cough, to the casual ear it probably sounds like I’ve been smoking two packs a day since I was 12. I’m also going to admit that I am giving him the benefit of the doubt here to the nth degree, but like I said, I didn’t want to get tazed. That’s really the bottom line here. Getting tazed would have sucked. I’ve seen it happen once, and it looks like it really ******* hurts.

***

The root of the problem is that while more and more people do know what CF is, at least somewhat, there is a larger portion of people out there who have no idea what’s going on. They are not at fault for it, most people have no connection whatsoever to the disease. That doesn’t mean it is not a problem, though. The world is full of issues, large and small. Cystic fibrosis is one of those issues. No killer is more or less important than any other. CF is a silent killer. It is a problem.

I hate the color purple.

 

Category:general -- posted at: 2:22 PM

In this podcast, Boomer Esiason Foundation Scholarships, you will meet Jillian Goodwin. She is 23 years old with cystic fibrosis and just graduated from Old Dominion University in Virginia. This past winter, Jillian applied for, and won, an academic scholarship from the Boomer Esiason Foundation. You will hear how that shcolarship helped Jillian complete her studies and what she plans to do now that college is over.
 
One thing is for sure, Jillian was a much better student than I had ever hoped to be. She is quite an impressive person, which just goes to show what it takes to be selected for a BEF scholarship. She can certainly be seen as an inspiration for younger people with CF who are thinking about heading off to college.
Direct download: OWN_IT_Podcast_-_Jillian.mp3
Category:general -- posted at: 1:58 PM

The bond between a father and his son is something very unique. A dad passes down a lot to his son. He teaches his son what it means to be a gentleman, what it means to be tough, what it means to be caring and, most importantly, what it means to carry on the family legacy.

The bond my dad and I share has been in the public eye since our 1993 Sports Illustrated cover. I realize it is not every day that a father and his son get the privilege to be on the cover of a world-famous magazine. Like anything, though, with that privilege comes an enormous responsibility. My dad - and whole family for that matter - decided the moment I was diagnosed in 1993 to bring cystic fibrosis to a national, maybe even worldwide, audience. The Remarkable Dads team asked me to talk to my dad about a few things, and then write about why I think my dad is a Remarkable Dad - here’s what I think:

(Here’s a writer’s note just for all you readers out there. I took a journalism class in 12th grade. That was like 6 years ago, so you’re going to have to excuse me while I take my best stab at this; and if Ms. KZ is reading this, I really hope I’m using all the techniques you taught me here.)

It’s no secret that my diagnosis came as a bit of a shock to my parents back in 1993. They had already known a bit about CF because of their relationship with Frank Deford. They knew the story about his daughter Alex, who had passed away from the disease, but my parents never imagined that they would be living with a son who actually had cystic fibrosis.

My dad recognized that he was a public icon in the media capital of the world, New York, as he had just been traded to the Jets. He said, “[Since I was] a quarterback in New York City, I knew that people would listen. I have never hidden the fact that I have exploited the popularity of the NFL and my stature as an NFL quarterback.” He exploited his NFL name simply so the newly born Boomer Esiason Foundation could gain traction and recognition.

Since CF impacts the American population on such a small scale, awareness has always been a concern, and so has the overall education around the disease. This is why patient-first programs have always been a backbone of the Boomer Esiason Foundation. Only 20 or 30 years ago, it was not uncommon for doctors to prescribe an overwhelming amount of bed rest for people with CF – that it was better for CF patients not to be active. They actually said that. In fact, doctors and medical professionals thought it was best for parents to enjoy the limited amount of time that they would have with their kids before the inevitable end of the road.

My parents never believed in that, and, as we now know, exercise and activity are the best treatments available for people with CF. From day one, it was decided that I would be like a regular kid. When it came to my playing sports, my dad thought, “It was always important for [you] to be a part of a team. It gave [you] freedom from the disease and offered a distraction from the responsibilities that go along with CF.” Further, he said, “[Mom and I] hoped that it would allow [you] to fulfill [your] hopes and dreams.” I definitely agree with my dad.

There’s nothing quite like team sports. Nothing lets me feel quite as free from the burden of cystic fibrosis as when I am playing hockey or watching my beloved New York Rangers, Boston College Eagles, or Green Bay Packers on TV. For those few hours out of the day, I am totally untouchable, that is until a three-score lead is blown, an onside kick is dropped, and the Packers are no longer going to the Super Bowl. That was a killer.

Personally, though, when I go back and think about my days playing youth sports, I realize where my mom and dad were coming from. I felt like I had a different uniform on each day of the week. One day it was soccer practice, then baseball, then off to play golf, then back to the hockey rink for the weekend. It never ended. I was exploring the endless limit of my athletic prowess. Dad said, “It’s hard to pick just one moment that made me so proud. I think the first time you had a single in Little League Baseball, or your first hockey goal, or really any first you may have had always made me incredibly proud, but your touchdown pass, the one that [was on ESPN] makes me the most proud because of the way your sister and mom and all your friends reacted to it. It was something special.”

If athletics and my dad have taught me anything, it’s that hard work definitely pays off. Just like my dad had a tough time thinking of one moment in the world of sports that brought him pride, I too have trouble thinking of just one time when I felt like I was on top of the world. I guess it was always cool to score or lay a huge hit in hockey, and sure the touchdown was special, not to mention that it was also on ESPN, but I have this one moment that always sticks out for me when I think about my athletic career.

I was in 8th or 9th grade, and a coach (who may have been my dad now that I think about it) really leaned on me in a pinch. It was the end of a hockey game, and we had to protect a one-goal lead. We had a short bench that day and we were going to be killing off a two-man power play for the rest of the game. The other team pulled their goalie to make it a 6-on-3-man power advantage. I didn’t come off the ice from the time that puck was dropped in our defensive with about 2 minutes left until the end of the game. We ended up winning, but more importantly, I don’t think I had ever felt a sense of triumph like that up to that point in my life. Just like any coach would lean on a featured player, I was chosen to be that player despite having a little bit of an extra challenge when it came to catching my breath.

Hard work is not the only lesson I’ve learned from Pops, by the way. He has always driven into me a vast sense of commitment and responsibility to both everyone around me and myself. I will never be a quitter. I always see anything through until the end because, well, that’s just how it has to be. Honestly, the only reason I spend so much time fighting this disease, hours every day, is because I really do believe that one day it will be in my past. I want to enjoy that day.

I know now that playing hockey isn’t nearly as easy as it used to be when I was younger and healthier, but it is still fun. I don’t want it to stop being fun. It’s especially awesome because I get to share these moments with my dad. He’s a rabid Rangers fan, just like me, and we play in an adult hockey league together. I think he sometimes forgets that he isn’t actually playing as a professional athlete anymore. His competitive instinct is unlike anything I have ever seen, which probably speaks to his level to commitment and responsibility.

I know that our recreational hockey team is small scale, but it is pretty representative of his character overall. I can guarantee you that my dad will agree with that statement. I try to feed off his overwhelming sense of responsibility. I think we all do, and when I say “all” I mean the Long Island Wasps hockey team (that’s what we call ourselves). When it comes to CF, though, he always says, “For dads, there is a responsibility that has to be met when a ‘special needs’ child is involved, and fathers must recognize the stress that is evident. This is no excuse not to support your child under any circumstances.”

There is a lot of stress associated with cystic fibrosis, let me tell you. I know all about it from the patient side of things, but I can’t even imagine what my mom (especially, yikes) and dad go through day-to-day. As my dad said, “[You’re an] adult, you can understand this now. [You] can never take life for granted. There is an ugly, nasty aspect to CF and as [you] know some people with CF don’t make it as far [as we have to this point]. It’s a significant reality we all have to face.”

Pops is totally right about this. There is definitely a deep, dark side to this disease, one that I try my hardest not to think about, because honestly, why should I? We all have something we need to deal with in life; my thing and my family’s thing is cystic fibrosis. If we all play our part, and fight it together, I’m confident that I will never have to walk down that dark road. There are times when aggression is the best course of action. Guess who taught me that? When it comes to fighting CF, there is no better way to be. I know I have dependable teammates alongside me and, quite frankly, it’s been quite a remarkable life that we’ve made for ourselves so far.

 

 

I wrote this blog for the Omaha Steaks – Remarkable Dad’s campaign. Go check it out!

About Remarkable Dads

Remarkable Dads is an online community brought to you by Omaha Steaks that is focused on all things dad. Whether you have a dad, are a dad, or one day will be a dad, the Remarkable Dads community invites you to pay homage to the men who are remarkable dads of the world. Audiences everywhere are invited and encouraged to share what they love about their dads - and how their dad has touched their life in unique ways - with anecdotes, stories, photos, videos and more. Remarkable Dads can be followed on Facebook (https://www.facebook.com/RemarkableDads), Twitter (https://twitter.com/RemarkableDads), Tumblr, Pinterest and other social channels.    

Category:general -- posted at: 1:49 PM

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