Tue, 26 May 2015
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.
Fri, 22 May 2015
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.
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
Thu, 7 May 2015
In this podcast you’ll see how I have taken to the coaching word, despite dealing with cystic fibrosis. Growing up, I was lucky enough to have some great coaches along the way. They always knew how far they could push me – just beyond the breaking point. I owe a lot of my character and success in life to my mentors, especially my coaches. They taught me invaluable life lessons away from sports that I one-day hope to pass on to my athletes. Success is something that is attainable for everyone, but not without hard work.
This video podcast/vodcast was made possible through an unrestricted, education grant to the Boomer Esiason Foundation from Chiesi.
Fri, 1 May 2015
This is probably one of my longer posts, but it is a huge topic that needs to be discussed. Ever since the “Something Amazing” blog post (http://gunnaresiason.com/something-amazing), I have gotten quite a few Ask Gunnar emails about not only my dating life, but also dating as a CF patient in general. This is an excerpt of an email I got from Katie, a 25-year-old CF patient, and she hit the nail right on the head:
“How do you handle dating being 24 with CF? I don't think you have a steady girlfriend (that you have made public) but what do you say/do on dates when you are coughing? Obviously, we have to tell our new interest eventually, and it depends on the right moment for most people but in some very early situations how do you handle it? For example, when I first met my last ex I was coughing alot the first day we met at a friend’s party. Luckily, I had my girls with me and nothing was said other then him asking if I was okay and if he could get me water (which was very sweet). However, on our first official date, I was coughing alot and he made a comment like oh no you are still sick? I smiled politely and said yes, can't seem to shake it. Here is where it gets complicated- No one likes to be lied to, and I feel the longer I go without saying anything about CF, the longer I am carrying that lie and I really don't want to upset anyone by having them think I lied. On the flip side, saying something too early can scare guys off, I believe. (And have experienced)
“How have you dealt with this situation? Are girls more compassionate then men, who tend to scare easier? (Or am I just meeting the wrong guys?)”
I want to thank you, Katie, for reminding me that I haven’t had a girlfriend over the past year. Well done. Just to remind everyone how fly (no one says that anymore), despite that, I used the picture of Paris Hilton and me for the top.
With that being said, Katie does address a pretty significant social issue that I think a lot of people with CF, including me, face. I am going to try to answer this as best I can even though I am not much of a Dr. Phil over here.
It’s no secret that cystic fibrosis can be a turn off for a potential significant other or suitor (no one says that anymore either, trying to bring all of this back). As much as we want to believe that there aren’t people out there who wont give us the time of day because our genetics aren’t up to par, the sad truth is that those people do exist. Here’s the deal, though, we don’t have to deal with them, and neither do you, Katie.
It is all about finding the right person. I know that has got to be the oldest cliché in the book, but it is beyond true for people with CF. It takes a very special kind of person to fight CF day in and day out, so it makes sense that it will take a special person to take on the burden with us. Personally, I think it makes sense in then that I am naturally attracted to intelligent, driven women who can handle the emotional burden that comes along with the disease. Don’t forget about the sudden mood changes we all go through because of our needed steroid use, or the very low lows that we experience during times when we are sick. Those are not the easiest feelings, and only a few of them at that, in the world to deal with.
The emotional burden is there whether we like it or not, and so is the physical burden of the disease. I think a potential mate (trying to use as many generic synonyms as I can here) for someone with CF has to be responsible and be able to think on his or her feet. It is not easy living with someone who has CF, just ask my college roommates who figured that out over my four years at BC. I thought David was going to pass out when he saw the hole in my stomach after my G-Tube fell out, but he handled it like a champ – he didn’t faint.
There is a lot that goes into daily care. It is impossible to notice the endless hours of therapy and maintenance that go along with the disease. The frustrating part is that despite all of the effort that goes into the fight, sometimes the reward isn’t there. Think about it. How many times have you stayed 100% compliant, yet find yourself spending a few nights in a hospital bed? For the most part, there is always going to be a bit of an inevitability that something can go wrong at any given time.
Sticking with me as the example here, how do I know my girlfriend would suddenly be able to handle a very rapid decline in my health? Some people really do succeed under the stress that comes along with an emergency, while others unfortunately fail. I’m not sure that there is a good way to figure that out until you live through an emergency, but you can sure as hell prepare yourself.
I think you have to consider who you are looking for and where you will find this person. Maybe it’s luck of the draw and you bump into your Romeo or Juliet at the gas station (most random place I could think of) or a concert, but I think you can improve your chances by choosing your crowd, or your scene (that’s what the kids call it these days). I don’t think there is any guarantee that you will strike gold and fall in love with a friend of a friend. I know from experience because my friends haven’t hooked me up yet!!!!!!!! Despite that little issue, that’s probably a good place to start or maybe your crush is in front of your eyes and you don’t see him or her yet.
Contrary to popular belief, I have had “girlfriends,” or love interests, I guess, at different points in my life (go me!). So, this is what I have done to help answer the above question… At the price of embarrassing myself for the betterment of the CF community, I asked a few of my former love interests to write anonymous little snippets about what they think of me. Here they are:
“Not once when I was dating you did I feel like I was dating someone with CF. We had an awesome relationship! You’re funny, thoughtful and smart – I never got tired of hanging out with you. You truly are a special person and I couldn’t be luckier to have had you as such an amazing first boyfriend.”
“As a girlfriend, especially a new girlfriend, I never wanted to be the one who was always going for seconds at the dinner table or the chick who was ordering extra fries at brunch, but when I was with you, however, I could always count on you leaving your second slice of pizza untouched or ¾ of the popcorn bag uneaten, so I never had to be “that girl.” Your food would just mysteriously disappear without anyone noticing who was doing the eating – kept me happy, and your mom happy too. From a hygiene perspective, my hands were always clean… You, weirdo never went anywhere without Purell.”
“Gunnar, you are a ******* *******”
“Let’s just say you were the funnier of the two in the relationship. You could always make me laugh, even the way you laugh used to make me laugh. Although, what wasn’t so funny was your love of Blink-182 (I’m a country fan) and somehow I could never find the country music station in your car. But, I think I impressed you most when I knew all the words to a random Bowling For Soup song. In all serious, you wanted me to write some about you as a person, not just your CF – that was easy because I never saw you that way. You were just Gunnar, a caring, nice and thoughtful guy who, even today when I think about, continues to make me laugh.”
“Besides the mono scare you gave me, you’re totally awesome and are hilarious.”
“What I love about you is how fun and easy you are to be around. In college, whether we were going out, watching our rival hockey teams or going to see Act of Valor for the eleventh time, we were always having so much fun.”
Thank you ladies, you’re all part of a really exclusive club now.
The point that I am trying to make here is that although I may have CF, I am seen as a person beyond that. I think that is made pretty clear in the one with all the stars. Straight to the point, that’s my girl.
When it comes to finding a significant other, I think it just kind of happens. I try to think about how I make friends, or how I became friends with my best friends. Other than the few that I got stuck living with in college (love you guys), it all just happened organically. For the most part (key phrase there, because yes we can all be idiots sometimes), my friends are all smart, responsible and fun people. They are a lot like me in a lot of ways, but very different at the same time. Our differences compliment each other, though, and that’s why the friendships work – except for my college roommate Vince, he loves to chew with his mouth open, and I don’t think I will ever get over that.
It just comes down to being your normal self when you try to create a friendship or a relationship. Unfortunately, Vince is his normal self when he chews with his mouth open. Damn. But in all seriousness, I think, for me at least, when I go on dates I try to bring every positive about me to the table. I have a hard time speaking for myself, which is why I included the messages from the past acquaintances, but I think anyone would tell you that it’s pretty easy to tell that I do have a bit of drive inside of me. There is something about me that always wants more, and I think that is a positive that I try to show when I go out on dates. I’ll use an example here. I have gone out a few times over the past couple weeks with a new girl, we can just call her “new friend” for the moment (because if she reads this and sees her name on here, she will probably kill me), and that’s exactly what I have tried to do, show her my overwhelming positive side. I guess you can ask her if I have succeeded, but what I can say with confidence is that I have been very honest. Typically, as you can probably tell from my blog, I am very open about CF. Obviously with the coughing and the seemingly endless stream of pills that come out of my pocket, questions do get asked. Honestly, I don’t blame anyone for asking me anything for that matter.
I try to approach the topic with a bit of humor, kind of like I do here. The way I see it, the only way that I can make this hellhole that is CF doable is by laughing at it. If I can’t laugh at myself for some of the s*** that I get myself into, then how can I expect to be an approachable guy? In this case, I kind of lucked out because new friend does have a really good sense of humor and is the sciencey (made up word) type, so she can laugh along with me, while at the same time, she does have somewhat of an understanding of the disease. She asks all the right questions, and I have no problem answering them. Other questions she, or anyone may have, though, are probably better answered through experience. Like any of my other friends, I think she’s able to look beyond my CF and see me for who I really am (I make myself sound really awesome there, “who I really am” – I’m not like Bruce Wayne or something THAT cool, let’s calm down), just like I am able to see her for who she really is. She is exactly what I mentioned before, intelligent, fun, driven and responsible (she’s a hottie too), so I guess I can see where this leads to. Who knows, though, new friend might see this and kick me to the curb after seeing how transparent I can be – the things I do for content on this blog. Stay tuned for that answer.
I know this has been a really long drawn out answer, but I hope I have captured at least some of the anxieties CF patients may face when it comes to dating. It is not an easy question for someone to ask, so thank you, Katie, for bringing this issue to my attention. I think the bottom line is that it is all about being yourself. You aren’t going to gain someone’s trust by lying your way through a relationship. My mom is the one I lean on for answers here, she always seems like she knows the right path to take, so I guess I have gotten a lot of this from her. She’s sort of like the Dr. Phil of the family. Dr. Mom.
Here’s my last note. I know there are still some bigger picture questions that need to be answered like, you know getting married and what happens after that, but the kid over here is only 24, and I am not prepared to dive into that, nor really want to at the moment. (I also hope you noticed that I used the first, second and third person in that sentence. Hell yes.). As Carmen, another college roommate, once said, “let the kid play.” You can take that to mean whatever you want.
Katie is a pretty interesting person with CF – she has a blog herself, check it out at: http://25yearsyounginchicago.blogspot.com/
Remember, May is CF awareness month. Be on the lookout for a lot of really cool promotions from the BEF, as well as my CF awareness month blog post that will be coming out soon. Is CF awareness month supposed to be capitalized? Who knows?
ALSO --- if you are a college student with CF, APPLY FOR SCHOLARSHIPS THROUGH THE BEF at www.esiason.org – right now is a popular time to apply, don’t get left out, help yourself out with the tuition bill!
Category:general -- posted at: 4:00 PM
Tue, 28 April 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.
Here we are, back again for the third round of Ask Gunnar. I have gotten quite a few really good questions over the past couple weeks, so let’s just dive into it. Oh, and remember, I AM IN NO WAY A MEDICAL PROFESSIONAL, so this is just advice, no more, no less. Don’t do something stupid because you think I would do it. The funny thing is, I do, do a lot of stupid things. Ha ha I said dodo.
Our first question comes from the mom of a CF patient who is a freshman in college, but is having some trouble with the new environment. “[He was] put on disability status at school… [and has] become not only depressed, but very angry… Did you go through anything like this? What do you think would be helpful?”
This sounds like quite the tricky situation here. From your brief email, it sounds like he is having trouble accepting his cystic fibrosis, and that you have also tried the therapy route, but without much return. I think the key to success here is getting him to accept that there is an enormous challenge in front of him, but a challenge that he can overcome. It is definitely not something that can happen overnight. The million-dollar question is: how can you help him understand that? I can’t remember a specific time in my life when I rebelled against my CF, but I can think of a thousand different instances when I was frustrated beyond belief. My support system is always the most helpful thing for, but I definitely do need to get away by myself sometimes. I guess it is pretty easy to see when I am going through a tough time or am down on myself, because it seems like I always have a friend or family member right there to pick me back up. My biggest fear is that I will let down my friends and family when I get sick, but they are always there to reassure me that a lot of things that happen to me are not within my control. I am no stranger to getting sick, but it seems like whenever I do, I always get that same feeling of helplessness, I don’t know why, but I do. Like I said though, there’s always some right there to pick me up. They know how far to push me to help me get back on his feet. My friends and family have found the perfect balance between knowing when to be there with me or let me do my own thing. That’s what I think you need to do. I think you, the rest of your family and his friends need to figure out how to give him an incentive to getting better and how to push him in that direction. I know this is a cliché, but you won’t be able to walk him through the door to compliancy and accepting his disease, but you can show him how to get there.
This next question was probably one of the more blunt emails I have ever received. “How do you know what the right time to get a port is?”
That was literally the entire email. Straight to the point – got to love it.
The “port” is definitely a hot topic. I am no scientist, but this is really a question for your doctor. I will say, though, that I do not have a port. Fortunately, I do have good veins, so I don’t have any trouble getting PICC lines or IVs placed. My veins actually make up one of the few systems in my body that works correctly. I also would not be able to play hockey with a port, so no port for me anytime soon. With that being said, I do know quite a few people who do have a port and they love it. It sounds like it makes their lives a lot easier on the homecare front. They spend less time in the hospital, and they have much more flexibility when it comes to scheduling IV meds and typical day-to-day things that can be a challenge with a PICC line. To that point, I have friends who have become so good at accessing their own port that they can choose to go swimming or take a real shower mid IV course. That is definitely something I am envious of, but when it comes down to it, I am fine with not having a port myself.
The next question has to do with youth sports. To this point, I think this has been one of the more widely discussed topics. It comes from parents of an 11-year-old boy with CF. “Should we tell our son’s new [soccer] coaches and team about his CF. We don’t want them to think he is sick and can’t do as well as other because of CF.”
This is a pretty common question, but it is also a decision that you need to be comfortable with. My parents always told my coaches, teachers, etc… about my CF. I don’t think I received any less playing time as a result when I was a kid. In fact, I can remember a few times when I felt like I was playing way too much in a given hockey game or two. On the other side of things, though, I guess there is no telling how someone may react once given the new information about your son’s CF. I would hope that whoever is the youth soccer coach is the kind of person who wants all of his players to succeed at that age, because, let’s be honest that’s the most important thing. Everyone is supposed to have fun at that point in life – win or lose. I think it’s fine to tell the coaches. If he is the type of kid with CF that coughs a lot, it tells them why and it also tell them how to react God forbid something ever goes wrong.
The last question today comes from a mother of two. One of her daughters does not have CF, while her youngest does. “I am curious if you have wisdom to share about how your sister has encouraged you during your battle with CF? We have a 3 yr [sic] old and she does not have CF. She has a gentle spirit and just adores her little sister. She always wants to "help" with the breathing treatments & chest PT. I'm wondering if there's anything I can do now to help her understand CF and encourage her to continue to be supportive of her sister?”
This is a hugely important topic. I think my sister has certainly been my lifeline in quite a few aspects of growing up. We managed to go to the same school all the way through college, which is pretty unique I think. We are certainly very close. If you haven’t already read my blog about Sydney, then I would advise you to start there (http://gunnaresiason.com/sydney). I think one major thing that you can do to tighten their bond is to afford them the same opportunities as they grow up. Syd and I have a lot of the same interests, and I think that’s been a big part of our relationship, but more importantly, we have always felt like we have been able to include each other in whatever we do (except for the one time her roommates forgot to invite me to her surprise birthday party last year…still haven’t forgotten about that one). We have always had a lot of the same friends and experiences because of that. Their relationship should obviously be centered on things other than CF. CF will occasionally come up in conversation when Sydney and I talk, but typically we talk about normal brother-sister things, including but not limited to me loaning her money that I very rarely see returned. As long as they are always there for each other, they will grow up to see nothing but success!
Category:general -- posted at: 3:12 PM
Thu, 23 April 2015
In this podcast you will meet Mallory Woodruff. She is 29 with cystic fibrosis and is a Boston College graduate, like me.
Mallory and I have been friends for quite a while. Some may say she was the one who brain washed me into deciding to go to BC. She now lives in Connecticut (you know, one of those states you drive through to get somewhere else) and is happily married. Mallory certainly thrives despite dealing with cystic fibrosis. You will hear about her goal in starting a family and how she has conquered CF in the working world. She can be quite the inspiration for the younger generation of people with CF.
Fri, 17 April 2015
The worst first date I have ever been on was during my college years. Boston College was slated to play Boston University in the championship game of the Beanpot. For those of you who don’t know, the Beanpot is a pretty huge deal in Boston, at least for students and alumni from Boston College, Boston University, Northeastern University and Harvard (do I really need to write “University” here too? You know what Harvard is). It is a college hockey tournament played annually, and needless to say there is basically a party surrounding it every year. I have very vivid memories from my freshman year of hundreds of BC students wearing gold creating chaos in the streets of downtown Boston on the way to the game. It is one of the more fun things a student can do during his or her time in Boston. If you don’t believe me, you can just search on the old YouTube, “I’m Shmacked Boston Beanpot,” and see for yourself. I’m not going to link to the video here because this is a family environment, obviously.
Anyways, I thought it would be an awesome opportunity to bring a girl (who will remain unnamed) I liked to the game. The kicker, though, was that this girl didn’t know the difference between the Red Line and the line you draw in math class – just not the kind of girl who will ever like hockey. That didn’t matter to me. She was tall, had [unnamed color] hair and was pretty cool, despite her lack of hockey sense, so I figured what better way to break the ice (pun, get it?!) than to get center ice tickets for the hottest event in town?
As a BC student, there is nothing more thrilling than getting an opportunity to watch BU lose, so I thought that was my ace in the hole. I couldn’t have been more wrong.
The night started off terribly. On the car ride to the TD Garden (that’s where the Bruins play), she asked me who Boston College was playing against and why it was all the way downtown, and not on campus. Ugh. Clueless. There I was, dressed head to toe in the Maroon and Gold of Boston College and she might as well have asked me if I wanted to talk about her family’s Boston Terrier (BU’s mascot, get with the program here. If you haven’t already Googled “Why Boston Is Awesome,” then you might as well stop reading). There was zero school spirit gleaning from her side of the car.
Whatever. I figured the crazy environment of the game would make things less awkward and more fun for us. If you haven’t ever been to a big time college hockey game, I suggest you go at least once. The students are crazy, the building is loud and, especially if it’s a rivalry game like BC-BU, the hitting on the ice is lethal. For students, it’s an amazing experience. The chants are ruthless and mean, but all in good sport. It’s also one of those things where everyone who is involved in the game, whether it be the players or crowd, is there because they love it.
Again, I couldn’t have been more wrong. She asked me why the game was so violent. Seriously? At that point, I was cringing on the inside and the type of awkward tension that exists on any first date was magnified times a thousand. It was almost like I sensed that she had zero desire to be there, while that was the only place in the world that I wanted to be at that moment. I guess to be fair, if you aren’t a hockey fan and you don’t know the rules, then the game seems a little strange. Still though, it was the championship of the BEANPOT. COME ON. That would be like me asking a girl from Canada if she wanted to go see a Stanley Cup game. You just don’t say no to that.
This time, my intuition proved me right, though. Just as the game was going into overtime (YES OVERTIME IN THE CHAMPIONSHIP), she told me she wanted to leave. Um, what? She had been thinking about going home because it was getting late and she had an exam in a few days that she wanted to study for. An exam in a few days? Hell, I don’t think I started study for my exams until a few hours before. I pleaded with her to stay. I told her she was seeing history. I may or may not have exaggerated when I said this game was going to be history, but it was an awesome freaking hockey game.
She finally agreed and said she would stay for overtime, but the moment the game ended in a tie, we would have to be out the door and headed back to BC. A tie!!!! I thought she was joking! This wasn’t soccer – championship games don’t end in ties. In America, we play sudden death. I told her the game could go until four in the morning if it had to. Again, she was not happy. She said she would give it one overtime period then she was making the trek back to BC with or without me.
As the seconds ticked away in overtime, the sweat on my face was building up from the sheer intensity inside the Garden. The building felt like it was going to burst the moment a goal was scored – if a goal was scored. The entire crowd refused to sit. My face paint was smeared all over my face (just kidding!!! I would not wear face paint on a first date, calm down). The game was quickly becoming one of the best in the history of the Beanpot.
Then, as if it was a miracle sent from the heavens, with a little over five seconds left in the first overtime period, BC put one in and won. The crowd exploded. BC had just won its third straight Beanpot and BU, ha ha “it sucks to BU”. I was going nuts. Me and my new middle aged alumni friends (remember, sitting center ice in the expensive seats, not with the students) were high fiving acting like we had just won the game. Then, I got a tug on my shirt, I looked over and it was the date, asking if we could go back to campus.
At that moment right there, I knew I would never settle with something that didn’t make me happy, whether it was a potential girlfriend or anything – that was it.
The reason I bring this up is not because I may have taken a very extreme path to learn a lesson, to never settle with what I have, but because I learned it all again this week. With my own eyes, I saw what happens when you don’t settle.
My dad and I, along with two other BEF team members, were invited up to Vertex Pharmaceuticals in Boston to see what an incredible place it is. Let. Me. Tell. You. There is something very special going on at Vertex. I don’t think I ever imagined a day in my life when I would see two TOWERS overlooking the water in Boston’s Seaport district dedicated to curing cystic fibrosis.
That is 100% their goal – to cure cystic fibrosis.
After meeting quite a few different people on the staff at Vertex, I can confidently say that I don’t think I have ever walked out of an office building feeling as inspired as I was a few days ago. The entire work force was totally energized and ready to improve on everything they have already accomplished.
I think it goes without saying the kind of major strides that Vertex has made in the world of cystic fibrosis. While only a tiny percentage of patients are benefiting in the here and now, I have the utmost confidence that one day CF patients worldwide will wake up feeling, I don’t know, just a little different than they do today. The road to a cure is a slow one. One that has many twists and turns, but a road that must be travelled, one step at a time. Vertex is doing the kind of things that many of us could only dream of 5, 10, 20, 40 years ago. They really are turning dreams into reality, they will not settle until the job is done.
***For the record, the girl from the date and I are still friends, and no she still doesn’t like hockey. She is super successful and I THINK her school spirit has gotten a little better, but we definitely butt heads when it comes to certain things.***
Be on the lookout for a new podcast next week!
Following that will be my next installment of “Ask Gunnar,” so keep those questions rolling. GunnarsBlog@esiason.org
I do my best to answer all the emails I get, but I apologize if I don’t have the time to get to yours right away. Maybe I should get myself an intern.
The photo collage at the top is credited to Vertex and Vertex's twitter account @VertexPharma
Category:general -- posted at: 1:45 PM
Mon, 6 April 2015
My last few blog posts have been in the “list” category, so I decided now is a better time than any to speak my mind. Here we go...
It’s my birthday today, and I think I have come to realize two things as I have gotten older. First, it seems like the taxman keeps taking more and more money away from me each year. Not sure how I can change that. The second is that I’ve recognized I’m going to be a kid for my entire life.
There certainly are some days when I feel like I am 75 years old. It’s no secret that my hair is thinning out in different spots because of the crazy toxicity from some of my antibiotics, and the aches and pains come and go just like my overall energy level. Here’s the deal though, I feel pretty good most of the time, and in my heart, I feel like I am 5 years old. I am the kind of person who makes shampoo mohawks in the shower, loves video games and can’t help but look at sweet new Nerf Guns on the shelf at Target.
I’m not 100% sure why I still do the shampoo mohawk-thing. I think it goes back to when I had one of those waterproof CD players (before the iPod!!!!), and I used to listen to All The Small Things and What’s My Age Again whenever I was in the shower as a little kid. I cannot tell you how many times I’ve listened to those songs. The shower is where I let my inner Tom Delonge loose (if you don’t know who that is, you have zero punk rock inside you). You would be totally correct to assume that I belt out the lyrics just as loud now as I did when I was 10 years old. I can also tell you with the utmost certainty that each time I do shape a little mohawk, it brings me right back to my childhood.
There’s nothing better than being young. That’s the honest truth. As time goes on, we all crave the past. Not because we have regrets, but because we feel like certain memories link us to an unbelievable sense of happiness. I remember the first night of college, the Blink-182 concert in Montreal, every single one of my high school football plays (I got hit in the head too, and yes, I’m fine), my first goal of every hockey season I ever played in, my first kiss (YIKES), my mom’s surprise 40th and 50th birthday parties, my dad’s record-breaking game against the Redskins and Sydney’s college graduation like they all happened yesterday. Each memory strikes a separate chord inside me. While Sydney definitely will not admit it, she was completely filled with joy when she graduated from BC. Her face showed it the second she was handed her diploma, and as an older brother, that moment gave me an overwhelming sense of pride. It’s fun to think back to days like that. I used to think it was memories like that that were keeping me young, but I have come to realize it is far more than just memories (dissect that complex sentence, I dare you).
So many people think that college graduation represents the end of a person’s youth – maturity and real-world responsibilities set in. I disagree, though. When Frank Deford and his HBO crew were filming the Real Sports segment on my family last year (https://www.youtube.com/watch?v=C5avme09utQ), he mentioned to me that he thought CF patients were “old souls.” I completely agree with that. I have had enough experiences, good and bad, in my 24 years of life to fill a dozen lifetimes. I have been to 15 Super Bowls, hundreds of Rangers games and spent the night on the USS John F Kennedy; I have visited 36 states and 14 countries; I have more friends than I realize and a family that loves me; but I have also been racked up in a hospital bed more nights than I can count. If there is one thing CF has done for me, it has matured me beyond my years. My parents instilled a strong sense of responsibility in me when I was very little, and since then I have grown to realize that there is no worse person to let down than myself (and mom too).
I have every reason not to feel young. As I have said time and again, I just don’t have the stamina to sometimes keep up with many of my friends, but that is not the essence of youth. Youth is not measured in maturity, energy or health. No matter how mature someone may think I am, how weak I can sometimes physically appear or how “unhealthy” I may seem, I know in my heart that I am still a kid. Our youth is found inside our hearts. I think a person chooses to be young for as long as he or she wants to be. You, yes you, will be forever young (sticking with the music theme here) as long as you have a fire inside your heart. You have to have the will to be young, the will to live life on the edge, make mistakes, do a few stupid things, but most importantly learn how to become a better person because of everything you have done. Our youth very much shapes our personalities – every single thing we experience creates our ever-evolving personalities. The moment our personalities stop growing is the moment we give up our youth. (I used “personalities” three times, in two sentences – I am an awesome writer)
I know I am only turning 24 years old, and I know I’m not that old (let’s be honest birthdays aren’t THAT fun after the big TWO-ONE), but I can tell you this, my inner 5 year old will never grow up. Star Wars will always be awesome. So will my video game collection and Lord of the Rings. Nerf Guns will always be cool too.
And… I know this one is for sure, I’m going to make my shampoo mohawk for the rest of time, because God knows my mom would HUNT ME DOWN if I actually shaved a real one.
Here’s something new, because why not?
My 15 favorite songs of all time:
All the Small Things – Blink-182
What’s My Age Again – Blink-182
Carousel – Blink-182
Asthenia – Blink-182
Jesus Christ – Brand New
Summer of ’69 – Bryan Adams
Have Faith in Me – A Day to Remember
You Had Me at Hello – A Day to Remember
Don’t Forget to Write – Last Winter
The Adventure – Angels and Airwaves
It Hurts – Angels and Airwaves
Bring Me to Life – Evanescence
Can’t Be Saved – Senses Fail
Believe – Yellowcard
Cute without the ‘E’ – Taking Back Sunday
Category:general -- posted at: 2:56 PM
Wed, 1 April 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.
All right, so here we go with the second round of “Ask Gunnar.” We are going to stick with that name until I can figure out something a little better – my family friendly creativity only goes so far at the moment. Remember, you can always ask a question (about CF or anything for that matter) by sending an email to GunnarsBlog@Esiason.org
To be completely honest, this has probably been my favorite part of the blog so far. I don’t think I ever imagined I would have nearly this many readers, so a big shout out to all of you for taking a few minutes out of your day to read my pretty relaxed take on the English language.
Oh, and as always, remember I’m not a doctor, so anything I say here is merely advice, no more no less. Don’t go out there saying I’m doing something just because Gunnar does. I promise you, I am not that cool to be a trendsetter, and for the record, I got a C- in one of my college science classes. It was about Space, not about the human body. I’m not sure I could even spell biology correctly without spellcheck. (For the record, I received my A’s in other classes.) Also keep in mind that I sometimes eat ice cream for breakfast – for some reason that seems like an important side note here.
Our first question comes from Tony who has a four year old with CF:
“…I was always kind of curious if I should hold my son back on any specific sports or just let him go through them like I normally would if he didn’t have CF. I am planning on getting him involved in anything he wants but wanted to see if you had any recommendations on what you experienced growing up…”
There’s no reason to hold him back! I had a little taste of everything growing up. My parents threw me on skates at age 6 when they saw that I was in love with the New York Rangers. I also played soccer, little league baseball and just about everything in between like every 9 year old. By the time I was older I was involved in some pretty violent sports – football, lacrosse and hockey. Sure, my mom didn’t love that I wanted to play football when I signed up just before my freshman year of high school, but I can tell you that some of my football memories are by far some of the best memories I have.
Isn’t part of growing up all about learning that you can get back up after you scrape your knee on the concrete? I broke my wrist in sixth grade playing hockey with older and faster kids. I got crushed coming across center ice with my head down. From that point on, I learned to skate with my head up. Athletics are incredibly important in a kid’s development – let him play whatever he wants!
The next question comes from CF mom Renee who is about to send her son off to college
“Can you please give us your advice on…things that we need to know as [my son gets ready to go] to college. For example, how can you clean and sterilize your nebulizer mouthpiece/equipment when living in a dormitory…honestly, just any advice, information, etc., you can provide to us to prepare for this transition would be greatly appreciated”
I wish I were preparing to go to college. That sounds fun. The best source of information is probably this CF podcast I did my sophomore year of school (https://www.youtube.com/watch?v=OA27rZokRno). It seems like that was forever ago – I look really young there, wow. Hair looks good, though.
Anyways, there are a few major points that I should probably make. The first is obviously the question of the roommate. I was lucky enough to be going to Boston College along with one of my best friends from high school, David (the one buried in the sand last blog post), so that transition was pretty easy for me. He knew what I was dealing with, maybe not the extent of it, but he was right there with me along the way. I still remember the first time I did the vest and my treatments in front of all my new friends the first day of college. I decided to just jump out and make it public knowledge. One of the kids in the room asked if I was getting high and if he could have a hit. My roommate just laughed, and I said, “No, you cannot have a hit.” Honestly, that will probably be the biggest test, or challenge, for him – deciding how open he wants to be about his CF. My advice is to go for it, CF is not something that should be a secret.
When it comes to material advice or day-to-day living, I think the most important thing is to make an attempt as a parent to make sure he has everything to keep the place clean. I cannot tell you how many bottles of Clorox wipes or hand sanitizer we had. Unless he’s going to one of those resort-style universities like Highpoint, Pepperdine or something like that, the dorm is going to be a mess, there’s no way around it. You just have to do your best to give him what he needs to make it happen. It’s going to be up to your son to figure it out – that is what college is for.
As for cleaning the nebs, I just used the electronic kettle, bottles of rubbing alcohol, dish washing soap and the newborn baby bath-thing that I’ve talk about in my two prior posts. It’s pretty easy. You will see what that all looks like in the video link posted above.
The next question comes from Rachel:
“When do you wear a [surgical] mask? And how often do you wear a mask?”
This question is very important. I know in your email to me, you said your doctor told you to use your best judgment, and I totally agree with that. As far as what I do with the mask, it sort of depends. I always wear one if I am on public transportation, ESPECIALLY DURING FLU SEASON. The mask really serves two purposes. It serves as a first layer of protection, and it also let’s people know that you want them to stay away, well reasonable people to stay away. Some people are just idiots and have no compassion for anyone else, you should just stay away from them as a general rule.
You definitely have to wear the mask on planes, subways, busses and things like that. Also in the hospital, that is a must. You mentioned you are a physical therapist in your email, so I would probably wear it around sick clients too, or just see if you can stay away from sick clients all together – I’m not sure how that works, or if it’s even an option. You have to use your discretion if you are in a crowded place. I try to stay out of crowds as best I can – you won’t find me hanging out in Times Square on New Years Eve anytime soon for that reason. You don’t need to wear one if you go to a concert or something like that – you’re allowed to live a little. You also asked if I wear one if there is a high pollen count, the answer is no. I am more concerned with protection against viruses, not the elements. I am not sure if that would even work, maybe?
I wear 3M masks; they actually have a filter in them that lasts a few hours. You can check out their website. The normal surgical masks you get at CVS aren’t too helpful, those are more for letting people know to stay away rather than protection.
The last question for this post comes from fellow BC alum Caitlin, who graduated in ’06 and has CF.
“I am still undecided if I am going [to get a g-tube]…I am not sure [how the procedure will go], did you have sedation during the placement?”
I always love to hear from fellow Eagles. Who knew so many alums also have CF. The surgery for the G-tube was not the most amazing experience of my life. It was pretty quick, but definitely a process. There was an anesthesiologist in the room and I was totally sedated. In fact, I could not even imagine what that would have been like without sedation. I’m not totally familiar with how the surgery is typically done, but for me, they did it via endoscopy, then I assume they just cut me open and stuck the damn thing in. One minute I was trying to make the case to the doctor why American soldiers should be granted the ability to buy alcohol before they turn 21, then the next thing I knew, I was in the recovery room feeling like Snoop Dogg.
I will be totally honest here, too. As much as I love the G-tube and think it’s really an amazing device, there was a considerable amount of pain for a few weeks after the procedure was done. The recovery time was a pain in the ass. It hurt like hell every time I coughed, laughed, sneezed or tried to move from the sitting position to standing. God, sneezing was the worst, so if you have allergies, I would consider getting it done like now, not in the middle of April or May. I know you said you would prefer not to be sedated, but that’s really a question for your doctor, I only know how things went for me. I also hate needles and like all that stuff, so that’s probably important for me to note too.
My reading list since the beginning of February
The Energy Bus – Jon Gordon
Killing Kennedy – Bill O’Reilly and Martin Dugard
Killing Lincoln – Bill O’Reilly and Martin Dugard
The Reaper – Nicholas Irving and Gary Brozek
Category:general -- posted at: 7:02 PM
Thu, 19 March 2015
After a seemingly endless winter here in New York, a few of my friends and I decided it was time to get away. Check out my buddy Dave in the picture above! We buried him (when I say we, I mean my other friend Joe did while I sat there reading a killer book because I have more sophistication than they do) in the hopes that it would spark conversation with a group of chicks on the beach. Unfortunately, the plan didn’t go as we hoped, but we got that awesome picture. We scheduled a trip to Miami in anticipation of finding Pitbull and Kim Kardashian. Just kidding, Kim really isn’t in my crowd, sorry Kim. Anyways, while Miami was awesome and I came back with a really awesome tan (sunburn), cystic fibrosis doesn’t always make travelling the easiest thing in the whole world. It’s funny because I received an “Ask Gunnar” email this week from a CF mom, Juliana, asking about a few tips ahead of a family vacation.
I think the worst part about having CF, other than you know, the sickness part, is the maintenance associated with the disease. There’s a lot that goes into daily care, hours of treatments, hundreds of pills and a million other things, so is there a way to make travelling completely stress free when it comes to going somewhere as, or with, a CF patient? The honest answer is no, but here are my tips to make it as easy as possible.
1. Do not forget anything
We’re going to start off with probably the most important tip here. Don’t forget anything. Do you have a list of your medications incase (you better have this list) you ever need to go to the hospital? This is the moment to utilize that list. Make it into a checklist. In fact, pack that list after you’re done checking things off because, what if you have to get admitted to the hospital in whatever city you are travelling to? Back to the point, though, do you have enough medications to make it through your stay? Do you have any extra medicine packed incase something spills or you drop something on the floor and realize the 5 seconds rule is a myth? Go through the checklist and organize a day or two BEFORE you leave. Don’t have an “oh sh*t” moment when your 30,000 feet over the Pacific Ocean and realize you forgot your enzymes back home. If that happens, your fun trip to Hawaii will be spent on the toilet instead of on the sandy white beaches.
2. Know the airport/airline rules – the Vest
You have a genetic disease, so you might as well use it right? Most airlines (I say most because I just have no idea if this is true for all, but I would imagine it is) must let you carry on the Vest. The Vest is huge, you know it and I know it. It’s also very expensive and dealing with insurance companies to get a replacement is no small feat, so let me give you a word of advice, DO NOT CHECK THE VEST AND SEND IT UNDERNEATH THE AIRPLANE. CARRY IT ON WITH YOU. It is as simple as asking your doctor to write a note for you saying that you are under his or her care for cystic fibrosis and that you have a lot of medical equipment that you need to have on the plane with you. You are allowed (honestly if you are flying an airline that doesn’t allow this, then you need to reevaluate your decision making process) to carry all medical equipment on board with you, even if it requires more than one bag. I’ll give you another tip here for free – I won’t make it a separate bullet point. When you get to your flight’s gate, ask the gate agent if you can pre-board because you have like 15 bags of medicine with you. Even though that person who works for the airline takes a beating from unhappy flyers every day, he or she is still a human being, and will most likely sympathize with you and let you pre-board, giving you a chance to take up as much overhead compartment space as needed for your medication.
3. The mask
This one really only applies for flights, or if you are stuck in the 1800s and are trying to travel across the transcontinental railroad to find the gold rush in California. Road trippers need not read this one. Please wear a surgical mask. Don’t get sick and spend meaningful days in the hospital. I want you to stay healthy, you want you to stay healthy, so do the right thing. 3M actually makes really good masks that have filters in them that last for a few hours, check out their website and buy a few for that next trip to somewhere sunny. Also, as a bonus, if there aren’t assigned seats, you will probably get your own seat and the opportunity to stretch out. Remember no one likes associating with or sitting next to the sick kid, whatever that means.
4. The extra day
My dad is a huge proponent of this one. He encourages me to dip into my pocket a little and get to wherever I am going an extra day early so that I don’t have to fly first thing in the morning and deal with the hell that is associated on a crazy travel day. Here’s my example: (If you are just joining us at bullet point number four, my friends and I did a long weekend in Miami.) The plan for the Miami trip was to get on a flight at the crack of dawn last Friday morning so we would get a full beach day. Like any reasonable son, I like to keep my parents updated on what I am doing, so I mentioned the plan to my dad. He said, “why don’t you take Thursday off, go a day early and book yourself on a flight at a reasonable hour so that you can effectively do your treatments in the morning then head to the airport.” I couldn’t really think of a reason to say no, so that’s exactly what I did. I took a mid day flight and got to Miami Thursday afternoon. It was totally great. I didn’t have to rush through anything, and most importantly I was able to effectively complete both of my treatment sessions that day. The next morning while I was on the beach sipping some exotic drink (ice water), my two friends arrived at the hotel looking like zombies.
5. Cleaning the gear
Okay, this is the big one we were all waiting for, because for some reason there is always panic (my house included) surrounding this topic. So, this is what I like to do. A friend of mine with CF (sup Amy) told me that when she travels, she buys disposable Neb-T’s. Remember, Neb-T’s are what I call the things that you put the medicine into when you want to nebulize it, sometimes they are referred to as “neb cups” or like a million different other things – I just happened to settle on Neb-T. For the record, I have no idea if what I just said makes sense. I don’t even know if “nebulize” is a word, but we are just going to pretend that it is for the sake of that sentence making sense. Anyways, I have recently started throwing those bad boys out after one use when I go on vacation. The benefit to having the disposable Neb-T’s is that you can just throw them away and not worry about cleaning them as the trip goes on. The cleaning process is an extra 30-45 minutes that you don’t need to be spending in the hotel room each day, while you could very easily be skiing down a mountain or hanging out on a beach. Obviously this only works if you are going away for a few days or maybe a week. This is not something you need to be doing if you are going away for a month. Traveling with 472 Neb-T’s takes up a lot of space if you are going to be gone for a long time, so if you are the type of person to go away for months at a time, then you will need to bring the electronic kettle that I talked about in my last blog post (which you can find here: http://gunnaresiason.com/cf-life-hack ). Typically if I am going away with true Neb-T’s, not the kind I can just throw away, I clean them in a Tupperware container or one of those things that you bathe newborn babies in. I have no idea what that thing is actually called, my mom got me one before I headed off to college 6 years ago, and it’s made it with me this far. And to answer your question, yes, I take great care of my Neb-T’s, they are as valuable to me as a newborn baby… only the best.
6. Be smart about where you are travelling and who you are traveling with
For most of us, college is over. It’s sad, but it’s the hard truth. Every single vacation with the bros doesn’t need to be reminiscent of that killer spring break trip when you were 20 years old junior year of college. Like I have said time and again in my blog, I really do think that we live our lives through a vast collection of experiences, and one day, hopefully, we will all have an enormous memory bank to look back on and smile. It’s important to have those memories. Every memory doesn’t need to include some crazy party on a beach in some far away place. You also won’t be living much longer if you have CF and make it a habit of getting trashed on the beach. Sorry, you just cannot live that lifestyle; it’s not in the cards for us. Accept it – I have. So, if you’re going away to the beach for the weekend, let’s tone it down on the whole spring break thing. Yeah, that might be fun for one or two of the nights, but not all five or six, you aren’t in college anymore. If you’re in college, well you’re on your own there, I have no advice for you, good luck and God bless. I did the Spring Break thing – it was fun, but never again, that’s all I will say on the matter.
As for who I travel with, I am very fortunate to have an amazing group of friends (like I said in this blog here http://gunnaresiason.com/friends-are-everything ). They all have my back in any situation and they can tell when I have had enough, or if I am struggling. I don’t think I need to say much for this topic because I have already laid out an entire blog for it, but basically you just need to be smart about who you surround yourself with.
7. Enjoy the trip, let it all go
A vacation is exactly what it is meant to be. Relax. Live a little. For me, the only reason I spend so much time dealing with the nightmare that is cystic fibrosis is that I give myself a chance to live life. The fight is only worth it if you make it worth it for yourself. When the cure finally does come, I promise you, you will want to be in good enough shape to enjoy it.
8. Bonus tip*****
Okay, this one is very important and it doesn’t only pertain to people with CF, and let’s just say this issue might be a little bit more widespread in the “city where the heat is on.” If you are like 45 years old, plan a trip to say, Miami, and you want to “hit the club with your boys” to prey on young college girls, you’re doing the whole life-thing wrong. If you have your top 4 buttons undone and your grey hairy chest is sticking out, you aren’t helping your cause either. Reevaluate your life and figure it out. I think it’s time to hang it up at that point. Take a page out of my book, not one of the million socialite idiots that dominate the E! Channel and MTV – have some respect for yourself.
Category:general -- posted at: 5:40 PM