Sunday, December 21, 2014

It's Always Enough

It’s Always Enough

When I am faced with a decision to put my left sneaker on, then my right sneaker, then open the door to 20 degree weather, then take a few deep breaths and plunge into the icy wind as it pierces my lung tissue, and run, I usually choose to do it.




It’s come from years of craziness—crazy schedules, random symptoms, weather changes, life changes, food cravings…whatever comes my way I’ve had to adapt. It’s part of growing up—we all adapt, we grow up, and we change naturally.  Some people learn how to adapt well to change in their 20s, 30s, 40s, some not till their 70s or 80s.  I learned when I was two.
Like the decision to run, it’s sort of like adapt or die. Run, or lung infection—your choice.  That’s been my mentality every time I put the first sneaker on. 
But there are those days where (and runners you feel me) when that sneaker is giving you blisters, you ate too much almond butter and then downed some coffee, and you’re like “mm maybe not today.”  And what’s one day right? But see we all get in those slumps where the one day becomes two, and then it’s the weekend, its time to relax and then it’s Monday and you’ve skipped four days of working out. Not sure about you, but I’m looking at least a day off of school and possibly a strong antibiotic by Tuesday. We need to be consistent. That’s the beauty of this disease—it keeps you in awesome shape because you’re forced to workout!
But from all this regimen and consistency and “never saying never” is something I think we as CFers have lost—the ability to say “it’s enough.” 

We are enough. 

Our runs, hikes, swims, jump rope, kayaking, surfing, skateboarding, bike riding, weight lifting, whatever you do that sets your lungs on fire--- all are enough.
Some of the most successful people in the world have to look themselves in the mirror once in a blue moon and say “I am enough” or else their success would be lost to worry and self-doubt.  Similar to success in the work world, we as the CF population have to use the same tactics in the health world.



There are times when I am not this optimistic.  It would be distasteful of me to give you this false impression of a 24/7 bubbly blonde whose all like “oo my god life is positivity!”  There are times where I would come down on myself so hard for the most laughable things—like I didn’t run an extra three minutes during a run because my stomach hurt, so I started crying.  Sobbing, actually.  Crying because I knew I could do it, but I was convinced I was too weak mentally to finish the run. I actually took the next day off because I felt like I wouldn’t finish that run either. Total drama queen mode;)
The key point I want to hit home is that if anyone should believe that what they are doing, it’s you.  You do things every day to make sure you stay alive.  You eat, you sleep, you socialize, you work or go to school, you exercise, you take your vitamins…everything to keep you breathing and beating for the one life you get to have every day. And CFers, especially younger ones—news for you—your schedules going to be different from all your friends for the rest of your life.  Sure the treatments get a little tedious, but you’re going to be the spectacular one who exercises, with all your endorphins and happy juice floating around your bloodstream, loving how your hair looks that day, and smiling at everyone all the time...(disclaimer: don’t smile at the same person for too long, it will creep them out).  


You are born a fighter at heart—a gift you will always have. 
The best part about that fighter in you is that you can spread that spirit to other people.  I have had many people remind me throughout life that I “inspire them” or “keep them motivated” to conquer whatever hardship they are going through.  I never really understood why until the end of high school when I was hospitalized, when I looked around at patients around me and I was inspired to keep going, keep conquering each day—it’s like I was fighting for myself and them.  I wanted to get better so I could continue to fight for all the little CFers in the rooms next to me, the ones that needed a new pair of lungs, a new type of medicine, or a few more prayers to keep them going…I needed to get out of there so I could help them like they helped me.  Other CF patients are a huge reason why I started this blog—not only to spread awareness, but to continue to motivate others with CF to realize that they are enough and their fight is the strongest type there is.  
The one thing I can guarantee you, CFers, is that when you look back on your life one day, you will not regret a single thing you did.  You are the ones who will leave a mark, the true fighters, and I couldn’t be prouder to have you in my boxing ring. 

Do not forget you are always enough—breathing and beating is what you do and how you choose to do it is up to you.  The fight may be endless, but you cannot give up.  And don’t worry..you wontJ That desire to live is part of your genetic code, and you are stuck with it! 
I believe in you, fellow champions, and I will not stop fighting if I can fight alongside you.  So, if you could pass me a Christmas present, please pledge that you will breathe and beat in some way on Christmas day (or if you celebrate another holiday, do something on that day!:)  Go exercise, do your treatments, eat the right foods, even take a nap…do something that improves your health and keeps you fighting. Post it below if you want to--Just promise me that you’ll do something!
You are always enough and I will never stop believing in you.

Breathing&Beating,

Meghan













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Wednesday, November 5, 2014

interim post--F508del news!

Hi!

I've been off the blog for awhile, but plan on writing in a couple of weeks once PT school courses are done for the semester! 1.5 years left woo! starting rotations in a few weeks and ready to rumble.

In Positive news, check out this amazing article!--Having 2xF508del, I am truly excited about this!  Cross your fingers that the timeframe is shortened for this drug and CF research continues to thrive!

http://www.cff.org/aboutCFFoundation/NewsEvents/2014NewsArchive/11-5-Vertex-Submits-Combination-Drug-Application.cfm

Breathing & Beating,

Meghan





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Sunday, July 20, 2014

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