College and CF – Spring 2018 Scholarship Recipient Guest Blog

By: Holly Beasley

Approaching college while living with Cystic Fibrosis can be undoubtedly frightening. Although, great challenges bring great rewards. This is what I have come to learn during my time at the University of North Carolina at Chapel Hill. While I am only a sophomore at the university currently, I hope the knowledge I have gathered through my journey thus far will serve to touch others with CF.

I believe that living with Cystic Fibrosis requires honesty with yourself and others. Therefore, I must be completely honest with you regarding the college experience while living with CF. I do not aim to discourage but to instead challenge you to prevail. I think a unique strength was placed within all of us with Cystic Fibrosis to surmount any challenge that presents itself in our lives. One of these being college, if you so choose.

College with Cystic Fibrosis will certainly not always be easy. As you may know, sick days, lengthy therapy routines, and hospitalizations come with the territory. Combine all of this with the pursuit of higher education and one can become overwhelmed. Balance and prioritization become key in the life of a college student with CF. I know I have spent countless nights reading my textbook while my Vest was simultaneously shaking my lungs. There have also been times when I completed assignments while lying in my hospital bed. This is where balance comes in to play. Finding a system that makes time for both school and health care is crucial, but I want you to be certain that it is also achievable. Despite some extra setbacks and effort, I finished reading all of those pages in my textbook and an assignment has yet to be turned in late. Now, this is where prioritization becomes a major factor. In order to be an efficient student, your health must come first. If doing both becomes too taxing on your body, please remember that it is ok to give yourself a break from school. This has been a difficult lesson for me to learn as a student who always strives for perfect grades. The times I have put school before my health, it has never worked in my favor. I only became sicker, causing a worse impact on my academic performance than if I would have taken the time to recover initially. Carving an hour or so out of my day for therapy when I first noticed signs of sickness would have been much easier than the eventual hospitalizations that resulted from the neglect of this fact. Always put your health first. The aspirations you are seeking through your college journey can only become a reality if you are alive and well to participate in these realized dreams.

All of this may seem rather challenging. So how does all of this ultimately become rewarding? Well, that is entirely up to you. I’d like to give some insight on how this process has rewarded me, personally. This might be the same reasoning that inspires you to pursue higher education or you might have a unique drive that motivates you. Either way, hone in on this sense of why it is all worth it.

Each day attending college rewards me because it serves as a constant reminder that I am equally as capable as anyone without Cystic Fibrosis. We are all different and many of us have encountered at least some degree of a setback in our lives. Mine just happens to be Cystic Fibrosis, but I can work with this along-side my peers. One classmate may have had a parent pass away, another battled a different disease or any other challenge that life may present. Yet, we can all come together in one classroom in order to learn and grow as equals. College allows me to reflect on the fact that the circumstances life presented me with do not define me as lesser. Instead, they exist to strengthen me so that I may become more. Life with Cystic Fibrosis has not been easy and this has never been truer than in my time at college. As I sit here now, I can still honestly say that I am happy to have Cystic Fibrosis. We are forced to realize how special we truly are when challenged by this disease. Yes, I have experienced setbacks and hard times while in college. They have not defeated me and they will not defeat you. At times, I may have to exert extra effort because of my CF. The reward of knowing that I got the job done regardless is much greater than any challenge that college or Cystic Fibrosis may introduce.

Alcohol Usage in CF Population Survey Opportunity

My name is Erin Lowery, and I am an adult Cystic Fibrosis physician and assistant professor at Loyola University Chicago. My research focuses on alcohol use in people with lung disease, and I would like to better understand alcohol use in people with cystic fibrosis. I have been working with the CFF on a research project which involves looking at alcohol use in people with CF and how it impacts their health. As a first step in this project, we have created an anonymous survey. I hope that it gives us some insight into how people with CF are using alcohol and if it affects their health. Continue reading Alcohol Usage in CF Population Survey Opportunity

Upcoming deadline for USACFA Scholarship!

We are extending the Spring 2018 deadline until November 15, 2017!

The United States Adult Cystic Fibrosis Association (“USACFA”) offers the Lauren Melissa Kelly Scholarship award each semester, in honor of Lauren Melissa Kelly. The scholarships of up to $2500 are awarded to adults with cystic fibrosis who are pursuing career certifications, associates, and bachelor and graduate degrees.

Please find scholarship criteria and requirements on our website and direct any questions to scholarships@usacfa.org.

http://www.cfroundtable.com/announcements/united-states-adult-cystic-fibrosis-association-scholarship/

A fall 2017 scholarship recipient, Elizabeth Shea, has shared with us how her college experience has been shaped by having CF and all that she has been able to accomplish through the help of our scholarship and her dedication to hard work and passion in performing music.  In her own words:

As a winner of the USACFA scholarship for the fall semester of 2017, I am fortunate to have the opportunity to share some of my experiences as a college student with CF.  I thought it might be helpful to kids who are applying to colleges now, or those who are in college deciding on a major, to hear a little about what I’ve done and why.

First I should say I am now a junior at Stetson University.  I play flute and I am a double major: music education and music performance.  I added the second major at the end of my sophomore year.  I also joined the music sorority Sigma Alpha Iota in my sophomore year.  Both decisions have had a big impact on my life at college.

Music education was my original major, and believe me, it kept me very busy.  Between classes, private lessons, multiple ensemble rehearsals, mandatory recital attendance, private practice, classroom observations and studying, sometimes I hardly have time for lunch.  But, I knew that if I added a performance major, my playing ability would be seen as more competitive down the road when I’m applying to graduate school, or even in competing for a teaching job.  So, I went for it.

My decision to join a sorority was also significant.  Not only am I a member, I am now the treasurer of our chapter.  With weekly chapter meetings, events, executive board meetings, financial reports, banking, etc. I’ve had to dedicate a decent amount of time to SAI.  But the payoff has been great.  The sorority gives me an awesome group of close friends who all share my love of music.  I’m able to socialize with them and not just spend time in classes, performing and studying with them.  I’m also getting some valuable experience being in a leadership role with responsibilities that are new to me.

So, as you can imagine, I’m really, really busy this year.  I’ve had to be very careful to keep up with my medical treatments so that I can stay healthy.  Bottom line is, don’t assume that because of CF you have to limit yourself or skip things.  I might have to work a little harder to keep up with everything that I’ve added this year, but I am enjoying all the new challenges.  Of course, this year is also harder because I’m a junior performance major and so I am expected to perform at a higher level.  No pressure, right?  But I think I’m up for it.  Just try things and see what you can do.  You can always cut back if you end up overwhelmed, but if you don’t try, you will never know if you could have done it!

 

We Can, Right? – Guest blog from USACFA Fall 2017 Scholarship Winner

By: Jacob Greene

Cystic Fibrosis is an awkward disease. Whether it’s coughing attacks in the middle of tests, the infamous CF digestive issues (for professionalism’s sake I will leave it at that, but you know what I mean), or loud treatments in the morning and at night, there are many awkward aspects to cystic fibrosis. CF’s median life expectancy is no different. Continue reading We Can, Right? – Guest blog from USACFA Fall 2017 Scholarship Winner

Perseverance, Resiliency and Erin Andrews

This morning I came across a story on MMQB about unbelievable year Erin Andrews is having.

As many may know, Erin Andrews, NFL on Fox’s lead sideline reporter, had been dealing with a crazed stalker in court. I cannot even imagine the stress that must Continue reading Perseverance, Resiliency and Erin Andrews

CALL TO ACTION – The Affordable Care Act

From the CFF…
We are sending this out today to let you know about an urgent need for action.  Wednesday, the Senate took a significant step toward repealing the Affordable Care Act. As critical health care reform decisions are made, it is essential that Continue reading CALL TO ACTION – The Affordable Care Act

Making it Matter Ep. #21

Making it Matter Ep. #21: Cystic Fibrosis as an Invisible Illness
https://www.youtube.com/watch?v=l3oQZJXV3qQ

Julia and I continue the conversation from our last podcast about cystic fibrosis as an invisible illness in the newest episode of the Making it Matter Podcast. What is an invisible illness, why is it such a challenge and how do we deal with Continue reading Making it Matter Ep. #21

Gunnar Esiason’s Guide to Gifts for Someone with CF

Christmas is just around the corner, so it is time to start working on those lists to send to Santa!

Here’s my holiday season gift guide for that special someone with cystic fibrosis in your life… or maybe someone without CF (if you somehow find Continue reading Gunnar Esiason’s Guide to Gifts for Someone with CF

Making it Matter Ep. 14

Making it Matter Ep. 14 – Advocacy and Other Things

After our week off, Julia and I come back with lots to talk about. Right after her NYC marathon effort, Julia shipped off to Europe to tour a children’s CF center in the Netherlands. She talks about how much different care is than Continue reading Making it Matter Ep. 14

What I Learn from CF — By Jen Weber

By Jen Weber

The other day I was lamenting how life was taking another detour due to a CF complication – that time I was being admitted unexpectedly, which meant cancelling fun weekend concert plans. I think it is so easy to get stuck focusing on Continue reading What I Learn from CF — By Jen Weber