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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.

 

Direct download: A_Talk_with_a_Fellow_Alum..mp3
Category:general -- posted at: 7:52 PM

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.

FINE.

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

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

**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

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

Before we get going here, I have to give a nod to a buddy of mine from BC, Matt Paré, for giving me the idea to write this one. Matt is a minor league ball player and has a blog at www.homelessminorleaguer.com. He just did a “Life Hacks for Minor League Baseball Players” post. Now, believe me when I tell you this, Matt is one of the most interesting and genuine people I have ever met. He is also one of the few people I unconditionally trust my life with – go read his blog, you will not be disappointed.

So, thanks Matt for giving me the idea for this blog post.

Just to clarify, we are going to be talking about CF here, not baseball, and a few different ways that I use to make life easier – in the Internet blog world, we call those techniques, life hacks – every day things that make life a little easier. I’ve got six to list in this post since my birthday is April 6, and I just remembered it’s coming up. See, there’s a reason for everything. A lot of these examples may seem like common sense, because, well, that’s exactly what a life hack is.

1. The Pillbox

The first life hack that immediately comes to mind is the “pillbox.” I’ll admit, this is a pretty common thing, but I was without it for a while. A friend of mine with CF introduced me to the pillbox when I was in high school. You can find them anywhere on the Internet. I would imagine a pharmacy has them too. I know some people love to use the “weekly” pillbox, which is designed to help people to remember when to take their meds throughout the whole week. Personally, I prefer the daily pillbox. I’ve built it into my daily routine to put all of my necessary meds in the box at the beginning of the day. The particular one that I use has a large compartment for enzymes, then smaller compartments for any antibiotics, antacids or vitamins that I may need on a given day. Plus there’s room for auxiliary pills. Let’s be honest, you’re someone with CF, you never know when you may need ibuprofen or something like that. The bottom line is that the pillbox makes all necessary meds available, and most importantly, the pillbox makes it very easy to remember to take those pills. If I ever want a candy bar, I’m in luck because I have my enzymes on me. I always make sure I have the box with me when I leave the house. In fact, it’s gotten to the point where my friends are shocked if I ever don’t have it with me.

2. Mobile Treatments

I have to credit my college roommates for coming up with the name for this one – Mobile treatments, or basically, treatments on the go. Extra time is something we all need, so when I have an early morning commitment or appointment, the morning treatments need to be done somehow. The answer to that problem is the travel nebulizer. If you don’t already have one, you should get one. I know it might be a bit of an insurance battle (believe me, we’ve all been there), but it is totally worth the potential headache. Utilize your clinic’s social worker, and make it happen. I cannot begin to explain how much time the travel neb saved me in high school, or has saved me just about any early morning. Rather than getting up way earlier than needed and doing all of my nebs at home, I am in the car, tunes on and, well, puffing the magic dragon (medicine) on the way to wherever I need to go. In college, for some reason, my friends thought it was the coolest thing ever when I did mobile treatments and drove at the same time. I’m still not totally sure why, but it became a thing. I guess it was a great conversation starter, who knows. The travel neb is also great for vacation, they are typically pretty small and a lot of people make the case that they are faster than normal ones. The travel neb – just a great invention all around.

3. Electronic Kettle

When it comes to washing the Neb-T’s (that’s what I call the things that you put the medicine in when you want go get the party started) there are a million different ways to do it. I’m not going to cover all of them now, but when I was in the grossness of college, the electronic kettle was a lifesaver. It’s also great for travel, because you can never be totally sure of the environment you are walking in to. If you, like 16-year-old Gunnar, are unfamiliar with a kettle, it basically serves one purpose, boiling water on the stove – it’s not rocket science. An electronic kettle boils water without the stove. Brilliant. During the Neb-T cleaning process, I use three or four boiling water rinses along with soap to make sure everything is sterile. When it came to boiling water, the electronic kettle was always a million times faster than the crappy stoves we had in college. Again, it was a time saver. It’s cheap and easy to use, especially for idiots like me who can’t figure out how to get around the kitchen.

4. The shower

Whatever you do when you’re in the shower is totally your own business. Go in, get clean, get out – great job. With that being said, let me make a little suggestion for your shower time. While you’re in the shower getting your personal hygiene on track, it’s not only a great time to work on your best Taylor Swift impression (oh my God, look at that face, you look like my next mistake), it’s also a great time to clear those lungs. If you can spend an extra 2-3 minutes in the shower “huff coughing,” I promise you will feel better after you get out. If you have a cold, do one of those sinus rinse-things in the shower, then cough – cough as much as your heart desires. Cough until you have nothing left to cough up, or I guess nothing substantial to cough up, because, you know as well as I do, deep down there’s always something more. Then, after the coughing is done, use soap and rinse, because we all know no one wants to be covered in the s*** that comes out of our lungs.

5. The public transportation bag/kit

This one is for cold and flu season, but it’s helpful all year round. Also, just for the record I am not a germaphobe, rather I am a responsible young adult J. Cold and flu season sucks. Public transportation usually sucks, but most of the time it’s the best way to get around, at least here in New York it is by far the best way to get around. I definitely consider myself a regular on the train, so I need to protect myself. It is no secret that the subway is a breeding ground for cold and flu hell. Even the people that work there know it’s a problem. The New York MTA has signs everywhere asking people to cover their mouths when they cough. You would think that task wouldn’t be a problem here in the city that never sleeps, but you could not be more wrong. People don’t know how to put a hand in front of their mouths when they cough, it’s quite a problem, an epidemic really. Anyways, I have a little drawstring bag prepared with hand sanitizer, surgical masks, headphones and disinfectant wipe-things (I don’t really know what those are for, my mom just insists that I have them). Instead of running around looking for everything before leaving the house, and potentially missing the train, I keep it stocked and ready to go. I may look like an idiot with the mask on (and trying to figure out what to use a disinfectant wipe on), but the joke is really on the guy riding the train who is deciding whether or not he should wipe his runny nose on his jacket sleeve.

6.  Laugh

Laugh a little. You don’t have to take everything so seriously – it goes a long way.

 

 

Check out the Cystic Fibrosis Lifestyle Foundation at www.cflf.org. Their mission is “to supplement traditional medical treatment of CF with ongoing recreational exercise…[with] individualized recreational grants…” Klyn Elsbury, a fellow CF patient, recently featured me in their new blog series “Ask the Athlete.”

 

Also, remember to keep sending in those questions to GunnarsBlog@esiason.org I have received so many great emails so far. It has been pretty cool to get the chance to answer a lot of them. I plan on posting my second and third “Ask Gunnar” blogs very soon.            

Category:general -- posted at: 3:25 PM

I have to apologize – it has been a little while since my last post. I feel like my life revolves around a handful of rinks here in New York, and I haven’t had the chance to sit down and write as much as I would like. I am going to do my best to post more frequently, hopefully every other week or so.

The past few weeks have actually been quite the ride. I was going to write all about a few trips I have taken and some really great experiences (tune in next week for that one), but I suddenly caught myself mid-blog and decided to go in a different direction for this one.

I guess what I am trying to achieve with this website is to capture the essence of a person with cystic fibrosis, or a person with any chronic illness for that matter. You can be the judge of whether or not I am doing a good job of that.

It hit me today that there is really just one simple fact that sets CF patients a part from the rest of the population – the comparison between the time it takes for something to go bad with the time it takes to answer that problem.

I agree, that can happen with anyone in life, but in the CF world, this problem typically revolves around significant medical issue.

It is alarming how quickly things can take a turn for the worst compared to how long it can take to even attempt to fix the issue. I could very easily be at work or hanging out with my friends or something that I love, and in the blink of an eye I could be right back in a hospital room, laying on a table getting ready to have another PICC line inserted (and kept there for WEEKS at a time). It’s also a very real possibility that I could wake up tomorrow and be spewing blood from my lungs. I would be lying to you if I said that hasn’t happened to me. The problem is, though, is that I know there is no chance that I will wake up tomorrow feeling like I am suddenly cured. In a weird twist of irony that is difficult to articulate, I think that is why we all fight. I think that is why we do have hope. Although I know that I will not wake up tomorrow and magically feel better, I do maintain the thought that one day, it could happen. Maybe that is just me being stubborn, or maybe that is just me being optimistic.

The bottom line, though, is that the fact remains, so how can we change it – not just me, not you, but all of us. How can we create answers as quickly as problems manifest? That is your million-dollar question.

In my mind, that is also the root cause of any concern or frustration that I may have while dealing with cystic fibrosis. Anything that may come up in my life circles back here. Let me give you an example: I still live with my parents. I have come to call them my roommates at this point, and they are actually really great roommates – I get my laundry done, free rent and home cooked meals. Despite all of these benefits, I have considered moving out and being on my own again just like I was during the college days, but I just haven’t been able to. There are times when I feel so great that there is hardly anything holding me back from looking for my own place to live, I guess other than the fact that I have no idea where I would want to live. I mean I have saved up a good amount of money and I definitely consider myself responsible enough for the change in scenery (other than the time I almost burnt down my dorm sophomore year of college while trying to grill a burger on one of those George Forman things). I think I would be crazy not to think about moving out at my age, but without fail each time I do, it seems like just a few days later my health gets turned upside down. I have gotten pretty sick a few times recently and so dependent on aid that living alone or away from home is the furthest thing from my mind and in a way, almost completely terrifying. The road to recovery is very taxing and can take weeks at a time.

Several other stressful thoughts come up just about every day as a result of the time it takes get well again. A few of the things at the top of that list revolve quite a bit around social interaction. Just like moving out into the world is a step towards social freedom, friends, significant others and general relationships or day-to-day interactions are all apart of moving forward in life. This is in no way a cry for help as I have developed techniques, that both succeed and fail, when it comes to dealing with these issues, but there are times when the task of creating a normal life does seem incredibly daunting. There have also been times when I can’t help but feel like I have been left behind when am I totally sick and can’t get out of the house. The problem isn’t the challenge – that is never the problem. Challenges are created so we can take them head on. The problem is that there isn’t a great answer.

Constantly starting from zero creates an enormous amount of stress, and I am not afraid to admit it. Take this: last week I was on an incredible trip with my parents and a buddy of mine to the Super Bowl because I was fit to do so. Now, five or six days later, it is a struggle to get to the rink to coach a game, not skate, but coach. Struggling to stand up straight and bark orders across the ice is probably not a good sign. See, I know for a fact, I am going to be dealing with this issue for a few weeks, but I have made several commitments along the way, some more important than others. The thing that I hate most in life is when I let someone down, and this past weekend, I had to. I told my dad that there was no way I could play in a charity hockey game he was hosting for a young man that suffered a spinal chord injury in a high school hockey game. A few weeks ago, when my dad had asked if I wanted to play and what the cause was, I didn’t think twice, I just said yes. Fast-forward to this past Saturday and I was calling my dad to tell him that I didn’t think I would be able to make it to the rink and skate. He obviously understood and told me not to worry, and had my mom reinforce that point, but I felt awful for not sticking to the plan.

While the cold that started this problem is behind me, the lingering effects within my lungs and, if you must know, my digestive tract J, have left my energy level at essentially nothing. Was the risk of traveling on an airplane (GERM FACTORY) worth it? Yeah it definitely was, I got to see one of the best football games in the history of the sport and have an amazing memory for the rest of my life, but as predicted, I am suffering for the decision to go to Arizona.

Recovery is a nice thought, and I know it will come, but the time it takes to get there and return to normalcy is unnecessarily enormous. I mean, I don’t care what you say, but I know I am going to be missing out on any number of activities or potential blossoming relationships over the next 10 days or so. The one thing as a person with CF that I am missing is a perfect answer to this issue, and believe me, this issue comes way too often. 

Now, with all of that being said, if you have been reading this blog long enough, I think you should have a good understanding of my attitude, and really just about any person with CF’s attitude towards life – I, or really we, will not let this challenge get in the way. Guess what, my high school hockey team has a playoff game tonight and I made a commitment to the players, family and school at the beginning of the season to show up regardless of the situation, so I will be there. I will be living my life despite the s*** in my lungs, and everyone else with CF should too. 

 

 

My reading list since the last post:

Why Football Matters – Mark Edmundson

The Men in Green Faces – Gene Wentz

War – Sebastian Junger

 

Also, please take the time to check out the “Mikey Strong” website, the beneficiary of the charity hockey game I mentioned above. http://www.mikeystrong23.org/

 

Category:general -- posted at: 3:18 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.

Take it, or leave it, these are my answers to a few of the questions I have gotten since I added the “Ask Gunnar” feature at GunnarsBlog@Esiason.org

Before we get going here, let it be known that this is my first attempt at answering questions in this kind of setting. So, if I suck at it, this will also be my last attempt at it for a while before I can rebuild the courage to try again. It is also VERY important to keep in mind that I am in no way a medical or scientific expert meaning that this cannot be considered medical advice. Unfortunately, I am not a doctor. You can just ask my senior year astronomy professor from BC about my scientific expertise, or I guess, lack there of. Also, my last disclaimer: let’s not forget that I am only 23 years old, and well, to be honest a large portion of my motivation and concern that I have in my life revolves around my ability to pick up chicks at a bar, so with that being said, let’s answer some questions.

Question from a “germaphobe” mom in New Jersey who has an 8 year old with CF:

“[do you have any]advice for parents of younger kids with CF, what would it be?  Is there something that your parents did that just really affected you as a kid, that you wish they didn't do?  I would say that we hide our anxiety somewhat well from him, but sometimes it's impossible to do.  I know he feels different sometimes, but I tell him that "everyone has their own something, and we just have to do what we need to do for now."

I really like what you tell your son, because it’s true, we do all have something, and in your case (and his) that something is CF. He can never forget that. My dad, really both my parents, always made a conscious effort of trying to share the disease with me when I was younger. They wanted to make me feel like I was never alone. Whether that meant sitting and watching cartoons with me while I was doing my treatments or making sure I felt safe in the hospital, they were always with me.

I also think it’s important to make sure CF doesn’t entirely define his life. I largely credit the way I look at life and how well I am doing to my parents. They let me play sports, have sleepovers with my classmates when I was younger and really do anything a normal kid would do. Well, I guess my mom wasn’t too happy about me playing football because she was worried her little baby would get hurt, but I won that battle. On the flip side, though, they also drilled a sense of responsibility into me. When I was younger, I was allowed to do all these great things only after I got all of my treatments done. It was sort of like a task and reward system. My mom always tells the story that if I wasn’t willing to do treatments at a given time, Santa was only a call away or Tigger (yes the cat from Winnie the Pooh) would be very mad at me.

Basically, what I am trying to say is that I don’t think you should restrain your child at all. He needs to do what he likes to do. It will help him grow into a fine young man, someone who lives a normal life despite having CF, at the same time though, there is a very fine balance that you and your husband will need to find for him. How can he maintain his responsibilities? For me, at a young age, it was thinking that CF was like a game – a game that I wanted to win.

As far as your germaphobe fear, I am totally a germaphobe too. Hand sanitizer is my best friend – it should be your friend too.

Here’s a question from Uncle Jonnie:

“…My best friend has two daughters who are afflicted with CF. They are like my daughters and I have referred to them as my nieces since they were toddlers. They have called me "Uncle Johnnie" since then...My question is this, how can I be a better influence on [my teenage “niece”]? How do I convince her that she can have the life of a teenager and still treat her CF?

Ah, teenage years, the glory days. If I could go back, I totally would. I felt like my life in high school was right out of the movie American Pie. I always liked to remind myself that I played quarterback, had long hair, had a hot girlfriend and drove a cool car. I definitely peaked in high school. Take it from me, though, CF patients can 100% have a normal life in high school. It is important for her to know that she can ONLY have a normal life if she takes care of herself, though. I definitely struggled with that at times, but I think I quickly learned that I wasn’t going to be living a normal life if I was constantly missing football practice because I was sick. I think you, as an uncle, need to impress upon her that she can totally live a normal life if she wants to earn it. She can have a million friends and deal with all the teenage drama that girls deal with (I have a sister, I totally get it). Unfortunately CF is a burden, but her loved ones around her are there to help. No one is going to be a perfect patient, believe me, I am certainly not a perfect patient, but I understand the difference between being healthy and being sick. Now with that being said, no teenage wants to actively seek help for anything, or at least, I never wanted to actively seek help for anything when I was 16. I think you should encourage her to accept her disease, maybe even tell her reach out to other people with CF. I had (and still do to an extent) a relationship with a few other patients back in my high school years through Facebook. They told me all about their good and bad days. That definitely inspired me to focus on my good days, but learn from the bad. I think repetitive positive influence, maybe even some war stories from your high school days and a family viewing of American Pie might help. Well, maybe not the American Pie thing, but the other two for sure. Let her know a normal life is there, it’s just waiting for her to seize it.

This question comes from Mike in Newton, Mass:

“Gunnar, great stuff you’ve got going here, but I’ve got a question. If you had to choose hockey or football to be a pro in, which would you choose and why?”

Well, this is different, but thanks for the question. I would choose hockey. Now, I know you were a goalie back in the day, Mike, but I have to tell you goal scorers do get all the girls, or, well, that’s what I am led to believe after watching Youngblood. There’s nothing like shooting and scoring top shelf where mama keeps the thin mints. Bar-down, hands up, celly into the night. It would be pretty cool to play for the Rangers, lift the Stanley Cup and be loved by New York City. The Bruins suck, by the way.

The last question comes from a 19 year-old college student with CF:

“…You see, my freshman year of college, last year, I got sick, like really sick.  I stopped taking care of myself because I was just so sick of doing the same thing everyday and I guess in some way it was my teenage rebellion coming to surface… The first month of school I was hospitalized in RI for double pneumonia, blood infections, lung infection, and even the commom cold. You name it, I probably had it. I was even on oxygen. Gross…Apparently I was gray! Anyways, It was just the sickest year of my life. But that wasn't even the kick in the pants I needed to get back on track with my treatments.  So, I guess what I’m asking is, how do you do it? Treatments day in and day out? I've tried so much and so hard to get a routine but it's like I have this mental block that prevents me from taking care of myself.”

Believe me, you are not alone in dealing with the tough transition from high school to college inside the CF world. I was right there with you. Towards the end of my freshman year, I actually had to cut out a few weeks early and get myself back on the saddle. Here’s the deal, though, you have to ask yourself: do you want to enjoy college? If the answer is yes, you MUST own your disease (see what I did there, I used the title of the blog in one of the posts). There are a few ways to help you do that.

The best piece of advice that I ever got before going away to college actually came from another CF patient who had just graduated college. She told me that NO MATTER WHAT I had to complete my daily treatments, regardless of whatever I would be doing. If I wanted to enjoy college, I had to do my treatments. She made me promise her I would listen. I didn’t really think anything of it in the moment, but now I totally get it. She told me that it was the first thing I needed to do when I woke up, whether it was 6:00am or 2:00pm, because let’s be honest, not all college kids are waking up before noon. She didn’t stop there, though, she went on to say that I 100% need to do my night time session as well. I agree with her. I made a point of doing my treatments before I ever went out with my friends at night or before I went to bed. I knew that if I was going to be out late, there was no chance I would do them after getting back to the dorm. My friends understood that too. They were just as helpful. They would make me feel comfortable spending a little extra time in the room before we went out. There was never a rush, because frankly, they never wanted me to rush through them. Now with that being said, if I felt like I needed to throw the vest on for an extra 20 minutes after getting home from a bar at 2:00am, then I did the vest for an extra 20 minutes. Honestly, there’s so much free time in college, there’s no reason to not do your treatments. For us, we would kill time by playing Halo or NHL 13 on Xbox. You can only play so many rounds of Halo before it gets boring. Oddly enough, treatments helped fill some of the time.

Here’s my other little trick. Set attainable goals for yourself. Whether those goals have to do with your PFT’s or day-to-day life. If you set goals that you can achieve, you will feel an overwhelming sense of pride. For me, every night before I go to bed regardless of what I did that day or how I am feeling, I bang out 100 pushups, 200 sit-ups and 200 flutter kicks. I know that’s not a lot, but it’s still something, and when I finish it I still feel like I accomplished something. It gets me into a better mindset, and it sounds like that’s what you need. You just need to get your mind focused on the task at hand. I wish I was back doin    

Category:general -- posted at: 3:30 PM

I always get asked how I am able to stay so optimistic all the time. The truth of the matter is that there are some tough days. There are some really, really tough days – days when I look at myself in the mirror and I’m just like, “here we go again.” The kind of days when nothing is easy at all, not even the most mundane tasks, like getting from bed, down the stairs to the couch. Those days are the worst. But for every bad day that I go through, there are hundreds of good days.

This past month has really been, I don’t know, not the best, for lack of a better phrase, within the CF world – at least my CF world. Through whatever medium of social media, I feel like I have seen a picture of a different person each day tied up to an oxygen tank. For some reason, I can’t break away from the feeling that an oxygen tank is an ugly symbol of the ever-present CF threat. I have been there before and I hate whenever I am oxygen dependent. It crushes me.

This past month, I was also the sickest I’ve been in awhile, a really long while. I’m better now, but this was an ugly taste of it – I probably could have used a little oxygen in hindsight.

Beyond that, though, two CF patients I had a connection with passed away. I can’t say that I knew either of them very well, but I did know them – one through a fantasy football league, Chris, and the other through a BEF event, Ellie. I knew about their fights, just like they knew about mine. It is nearly impossible to overlook whenever something like that happens. The worst part, for me, was feeling totally helpless – unable to do anything about it.

As much as I hate being labeled a “cystic,” “fibro” or “patient,” there is a very special bond that we all share. We all know what it’s like to wake up in the morning looking for a deep breath of air that isn’t coming. Really, we all know what it’s like to have spent countless hours sitting on the couch doing treatments day after day looking out the window waiting for the day to come when we wont have to do our treatments anymore. The bond becomes a little tighter when CF patients fall to the disease. I can only hope it’s not so hard for them breathe anymore. In fact, I know it’s not so hard for them to breathe anymore.

So, how do I stay so positive when I go through stretches of time like this? There definitely are times when I can act like CF isn’t a part of me at all, but months like this past month remind me that CF is very real. I would be naïve to think that nothing bad could ever happen to me. The hard truth is that cystic fibrosis is a killer. It’s nasty and it doesn’t care who or what it takes.

I owe my resiliency to CF patients that came and went before me, and fought just as hard as I do, or really, any of us do. I know what I am capable of and how to push myself. My positivity stems directly from my ability to dream and constantly want more. Although cystic fibrosis may be considered terminal, I am able to overlook that fact. To me, CF is something that can be fought.

These days, there is nothing I hate more than having to miss a day of work. I like to think of myself as an active member of society, so when I am able to accomplish something for both, myself and the people around me, I am wrapped in a sense of joy. Although I may be sick, I am still productive. My optimism comes from the fact that I know I am able to do whatever I want to do – that very statement is true for you too, whoever you are reading this. If you put your mind to it, you are capable of achieving greatness.

I do whatever I can to keep myself healthy, so when the day comes that I won’t have to do treatments anymore, I’ll be able to take a deep breathe and enjoy what I have created for myself. Really, maybe more importantly, I’ll be able to throw back a couple Budweisers without having to deal with a 4-day hangover. I cannot wait for that day.

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The picture at the top is from the album Reach for the Sun by The Dangerous Summer. I actually only like one song on the entire album (“The Permanent Rain” thank you Pandora radio), but for some reason I think I like the idea of reaching for the sun.

I have also found that reading definitely helps me get lost in a different world. I’m not talking about the crappy books I was assigned when I was in school about God knows what, rather I’m talking about whatever I want to read, freely. Here’s my reading list over the past six weeks:

The Only Thing Worth Dying For – Eric Blehm

Killing Patton – Bill O’Reilly and Martin Dugard

Catcher in the Rye – J.D. Salinger

Outlaw Platoon – Sean Parnell

No Hero: The Evolution of a Navy SEAL – Mark Owen

Remember, if you want to see me write about anything specifically or want me to answer your questions in my next blog, you can email me at GunnarsBlog@esiason.org

Category:general -- posted at: 8:16 PM

 

Once college graduation rolled around, I knew it was time to find a job. I had this huge plan of going to law school and becoming a big time lawyer and stuff, but my health sort of got in the way. I drove myself into the ground towards the end of undergrad, as many college kids do.

 

So, I had to improvise. I took a look at some of my skills and decided to put them to use. 

 

In this podcast you’ll see how I have learned to become an active member of the workforce despite having cystic fibrosis.

This video podcast/vodcast was made possible through an unrestricted education grant from Chiesi.

Direct download: Gunnar_Esiason_-_Life_after_College_with_Cystic_Fibrosis.mp4
Category:general -- posted at: 3:17 PM

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