It's Always 100-100

CF and a social life? Yes, it is possible.  Many persons with CF, young and old, find it hard to share certain aspects of their CF life with others.  That first friend you made in pre-school up to someone you consider marrying one day—we all fear that they might judge us in some way because we are just a little bit different.  Having a social life with CF involves taking risks, stepping outside of your comfort zone, and being honest with yourself and people you care about. I have found that I embraced my “difference” and this allowed me to make lasting friendships and grow relationships with confidence. 

I believe that the most important thing to remember when hanging out with friends, co-workers, boyfriends/girlfriends, etc. is that you are focusing on those people.  For however long you spend time with them, you are focusing on them, not on CF.  Yes, sometimes you might have to step aside and cough or take a moment to pop in a few pills, and this might bring up the discussion of what you deal with.  However, focusing on other people instead of what’s going on with me has been a real health booster. When I go out with a big group, I am so focused on what they have to say and what is happening around me that I am able to let go of all the CF-related thoughts I have in my day.  I’d much rather focus on my best friend’s new boyfriend drama than thinking about why I had crazy stomach pains that morning.

I also believe in the power of being honest. In college, I would do my daily routine of getting up at 5am to workout, banging around the weights in my room, and then proceed to turn on my Nebulizer machine around 6:15am, all the while making plenty of noise.  When questioned about it, I was honest and said: “I have to do this every day because I need to take care of myself.  If I don’t work out and do treatments, I get sick.”  Some roommates accepted this and some probably pretended to, but either way no one had a mean word to say about all the morning raucous. I stated the facts and they were accepted.

 

Some people will accept who you are and some will not.  I guarantee you this fact holds true for anyone with or without a chronic illness.  So, do not sweat it! When you feel like it is the right time to share that you have CF with someone, keep it short and sweet. From there, if they want to hear more, they will ask questions.  I always start with the kindergarten version: “I have sticky mucus (like the kind you find in your nose) that clogs up my lungs, pancreas, and other organs.” 

I believe in the old saying “you cannot love someone unless you love yourself.”  This is the truest rule in the book when it comes to keeping friendships/relationships.  I had one year in college where I went through an epiphany, realizing that I have so much more to offer the world than I was currently giving. That was the year I really started to absolutely love myself, all flaws included. I wanted to try everything from then on out--I started the first St. Joseph’s University running club, ran a half marathon, joined a sorority, became a Resident Assistant in a freshman dorm, I went to Scotland to visit my best friend on spring break….anything I could do that felt new and made me feel alive.  Doing all of this made me feel confident in myself and excited in the fact that CF did not stop me from doing any of it.  When you can look back on moments in your life so far, whether tiny or huge, and say “that was a day I did not let CF get in my way”, then you know you have accomplished something.  Whenever I become insecure around a new group of people, for whatever reason, I go through my checklist of hurdles I’ve conquered over my lifetime.  Instant confidence from there.

Keep your friends and significant others close to you.  Every time you have a lunch date with an old friend, tell them how incredible they look or what you love about them.  When your significant other takes you out on a fun date, tell them how much you appreciate them and what makes them important to you. I learned from a very wise person: Show love, receive it back—that is the way it works.  The effort has to be both ways for any relationship to work—it’s always 100-100.  

B&B,

Meghan

http://www.hollywoodjesus.com/legally_blonde.htm

http://cheezburger.com/3158247424

Teammates: The Waves That Push Me Forward

Teammates come in many different forms throughout life.  Most of us have some kind of teammate, whether it’s a Mom, Dad, sibling, aunt, uncle, cousin, grandmother/father, best friend, husband/wife, physicians, nurses, or even our golden retriever (my running partner). 

A teammate is:

-a person who is on the same team as someone else (Merriam Webster dictionary)

-a fellow member of a team (Oxford dictionary)

-the closest bond between two people EVER. even more then marriage. (Urban dictionary.com)

So, the last example is a little extreme, but the bond between teammates is key to living with Cystic Fibrosis. We need our teammates and they need us. We need them to:

1.     Make us laugh in some way, especially on days that we have low PFTs, off blood sugars, or stomach pains from our pancreas

2.     Teach us to be our own advocates for our health

3.     In all honesty, my teammates have reminded me that I am not the only person with an issue.  On days when I feel alone or am focusing on how I am one of only 30,000 people in the U.S. with this wacked out disease, I am reminded humbly to take a deep breath, and look around.  I’m not the only one with an issue. This fact makes me get up and do my treatments every day, twice a day, no complaints.  Everyone has something and so do I—that’s just the way it is.

They need us, as persons with CF:

1.     to teach them lessons about patience, acceptance, and staying positive.

2.     To also teach them that they are not alone.  They aren’t the only mother, father, sister, brother, grandmother, etc. to a person with CF. Others struggle like them and through fundraising events like 5ks, galas, auctions, or even individual envelope stuffing, they bond with others who deal with the same stuff.  I remember when I was about 7 years old, speaking at a CF dinner event in front of 500-something people, and quite honestly, my speech was only good because I was cute;)  I remember several parents and family members of other children with CF dotting their eyes with napkins or smiling with tears down their faces. At that age I was really confused, wondering what I said to make them upset.  I simply spoke about my doctors and nurses and how wonderful they were. I later realized that they were all experiencing the same thing—the bond of hope that holds the CF community together.  They saw someone who was “healthy” with CF, a child who could talk and eat her whole meal and dance around with her best friend at the event.  The hope for a healthy future—that’s what bonds all CF teammates together.

3.     Lastly, we teach them to view the world with a broader mind.  Not only are my teammates sensitive to those with CF, but also other diseases & disorders as well.  You name it—diabetes, heart disease, cancer, alzheimers, down’s syndrome, persons who are paraplegic, autism—most if not all of my loved ones treat persons with diseases/disorders like everyone else.  It’s an amazing thing when you can teach someone how to be open-minded and to embrace others who might look, sound, or act different from them.   

In my world, my teammates come in various shapes and sizes, ranging from 11 years old to close to 80 years young.  Most recently, my team had to make a move two hours away from our home.  They did not move for a job change, a bigger house to fit more kids, or for any other typical reason for moving: they moved for me. My 3 younger siblings, my mom, and my dad turned their lives around because they want what is best for my health.  Imagine for a second all the sacrifices you give up when you make a move: changing schools, leaving best friends, leaving the comfort of your home you’ve had for years, etc. the list goes on. I felt really bad about all of this for some time—uprooting my family so we could boost some PFT numbers.  I confronted my mom about this a few times, and each response I received back was: “We are a team: any one of us would do this for each other.”  Showing love by making sacrifices—that is what a teammate is. 

In case you are wondering, we moved coastal—we are now 10 minutes from the new jersey shoreline.  The salty air has been shown to have incredible benefits for those with CF and the current research is all thanks to the Aussies.  Australian researchers have found that surfing has amazing benefits for those with cystic fibrosis. I’ll post some articles below for light reading.

Although not an avid church-goer (a “Chris-Ter” if you will), I will admit I am truly and sincerely blessed to have a great team. We are not perfect, by any means.  But the finish lines we cross together make living with CF that much easier.  They are my ocean waves that keep me moving forward through life and I would be lost at sea without them.  Thank you, team—I love you.

Keep Breathing & Beating,

Meghan

http://abc7.com/archive/6257965/

http://www.cnet.com/news/a-breath-of-salty-air-for-patients-with-cystic-fibrosis/

http://www.whoi.edu/oceanus/feature/marine-microbes-vs--cystic-fibrosis

http://www.ocregister.com/articles/kids-616543-beach-cystic.html