Soulever

“Soulever” – the French word for Lift. I have been getting harassed lately by a sweet old couple on my solo walks during our seemingly everlasting pandemic.  Every weekday I take my phone, inhaler, and airpods on a walk around our winding neighborhoods, all surrounded by water.  I walk by an elderly couple who lives near us, and every walk, it’s always the same – they are sitting outside on their concrete walkway in lawn chairs, soaking up all the healthy vitamin D they can get.  The husband says the same thing to me, and I turn down my volume so I can catch it, “What, are you looking at the sun? Why you always looking up? Take those sunglasses off so you can see it!”

I’m looking up because I love that part of their neighborhood. When nothing but blue and yellow fills the sky, the sun shining and not a cloud out, they have these beautiful trees with miniature white flowers.  The wind hits in just the right way and I get a nice snow of petals that falls around my face, my shoulders, my waist, then my ankles.  I love this street.

I’m looking up because I’m tired of looking down – at my laptop, at my phone, at laundry, at dishes, at my vacuum, at my sneakers, at cracks in the sidewalk – I am worn out from looking at things I’m worried about.  Looking down has not brought me any joy lately. Looking down and side to side, seeing the world crash around you like a giant sequoia that’s been cut too soon, consumes me with what we are all feeling right now – grief.

Time suddenly became a burden a few weeks ago.  I started a temporary leave from work and needed some distractions – ASAP.  I started to do all the looking down I could do, thinking I could do it all – stay in check with the news, look at emails every day, study for an upcoming certification constantly (to make sure I was ahead!), work out one hour every day (no skipping!), vacuum, laundry, dishes, repeat, look up ways to make myself even healthier, keep a constant and rigid bedtime schedule of 8:59pm and maintain that by looking at my phone every eight minutes.  The days were going so fast! Whoahoo!

But nothing felt productive anymore.  All the consistency put into routine and looking down wasn’t helping me feel ‘good’ about being here on this earth -  it only made me feel like I was on a treadmill going nowhere, contributing to absolutely nothing.  Everything physically hurt – muscles, joints, ligaments – and took a few days to feel better. My mind felt extreme fatigue, and my focus was never on what I needed it to be on. As one friend put it so well – you’re not tired but not well rested; not sad but not happy; not bored but not occupied. 

And so it took three weeks-but I stopped.

I still woke up early, but now bedtime was 9-10pm. I turned my brain off of obsessive studying for a few days. Instead I dived into Ted talks on breathing patterns and neuromotor recruitment and I emailed and conversed with some of the top minds in my field. I exercised for the time that my body allowed and didn’t push it unless I felt like my lungs really needed me that day. I allowed my emotions to heal and I cried. For myself and my fear but more for those around me – my healthcare heroes, my friends, my family.  Zoom-ing with friends I haven’t seen since our wedding was one of the best moments. Spending time with Rob – time that we gave up so much while I was in grad school, and after that doing treatments and getting sick, buying a house, getting married – we actually have time now to just be.

I encourage you to elevate, raise, lift, Soulever – over the next few weeks. I understand that the times seem dark, in distinctive ways for so many different people.  I’ve read, I’ve listened, I’ve talked, and I’ve watched numerous videos on what you’re going through in the past three months, right now, and the next few months – and I love you. I probably don’t even know you, but I do love you. Whoever is reading this please know that.  

I love you because you washed your hands, you stayed home, you wore a mask and gloves, you coughed into your elbow, and you took your socks and shoes off before coming in your house (no just me? Every time? OK). Thank you for keeping us all well by taking precautions. Bold statement but true – you saved my life.

I’ve posted this in here and I’ll post it again - Dum spiro spero – While I breathe, I hope. My hope is that we keep elevating each other, raising one another up, lifting our eyes to the sky and looking for the windstorm of white flowers. You keep looking and I will too.

Breathing & Beating,

Meghan   

Whose Worth Fighting For

The ones worth fighting for are the people who, when you are at your lowest point, remind you of why you are still fighting.

My name is Meghan, I am 28 years old, and I am keeping this webpage of written chapters going because I want to remind everyone with CF that there is always a light in your next step, no matter how far away it may seem at times. That next step can be as grand as pulling your PFTs up by 30% or as simple as being able to drink a hot cup of coffee tomorrow morning without feeling like your going to cough it up due to the temperature change. Any Step Matters. When you feel like it doesn’t, please remember that you are pushing through walls not only for yourself but, in my eyes, more importantly for those who love you.

Recently I had a 25% decrease in lung function, which we are attributing to severe asthma. Not an infection, with the normal course of antibiotics.  Severe, asthma, that, won’t, go, away. And unfortunately it has been getting worse since grad school.  It’s been one of the many mysteries of CF and we are tackling it piece by piece.

We all have low points but the week of 12/10 was one of the worst.  I felt absolutely wrecked.  I was barely getting through work, every piece of my body hurt from shaking during coughing and irritating every muscle in my chest.  My intestinal tract was, lets just say, very off. I became extremely depressed and finally at the end of the week, we lost two CFers, Leah and Christy, to complications from CF and colon cancer.  

Wrap it up on Monday with a poor PFT and that was it.  I was done. Thoughts about the future cranked themselves into my head and I let them roll and wind all the way through.  I attributed my low scores to deterioration and just thought this was the new norm, and I might as well make the most of my time.  

My family and Rob are the reason I came up for air.

I looked at my mom’s face on the drive home from that appointment and knew this was for her.  I listened to Rob’s attempts all week to try and desperately figure out what the hell was going on and why we couldn’t fix this.  I talked to my Dad, Casey, Anne, and Sam that week and quickly realized this isn’t all about me and my time here—it’s about them.

I need to care for them and love them like they have loved me most of my life.  I needed to remember the moments that my mom fought for me to get the meds I needed or get me out of situations where people around us were sick.  I needed to remember the moment I suffered from hemotphysis and Rob was there cleaning up the mess in the carpet. I needed to remember the time my Dad drove me to a half marathon in Philly so I could accomplish a goal I so desperately wanted to do to show CF that I was greater than it would ever be. I needed to remember the times when Casey would sit and listen to me complain about every symptom and appreciate how hard it was for her to hear everything I do not really show her. I needed to appreciate the times when my two youngest siblings would ask my mom how I’m feeling without asking me (sorry I found out;).  

All the sacrifices my friends and my new family (Rob’s family) made are never forgotten.  The co-workers who came to CF events, even though some were In their own pain, making it difficult to walk. The PT school friends who would hand me food or tools after washing their hands first.  The grade school and college friends who check in to make sure I am doing okay. Rob’s family who always checks to make sure every part of their house is 100% clean before I step in the door. Everyone, I am fighting for, and I cannot thank them enough for helping me see that light in the next step. 

As the saying goes, HOLD those you love closest to you, and never forget to appreciate them.  Whether it’s saying thank you or I love you. It goes a longer way than you’d ever imagine.

Wishing All of you a Merry Christmas, Happy Holidays, and a healthy and joyous New Year.

Love Always

Breathing and Beating,

Meghan 

Adulting

Yes, I used the term, and am proud of it. I am officially, Adulting.
The big girl job, the big(ger) girl loans, and a gradually grown-up mindset as to how to succeed in the workforce and in the 20s decade.
I am writing about this topic because my co-workers had no idea what it meant, and this to me was so interesting because it is used quite frequently in our community to describe the growth into a new stage of life. Everybody at some point has gone through the process of Adulting, and now our community has chosen to simply label it with a word. Adulting is more importantly an experience that CFers born 10-15 years before me did not get to grow into. CF has slowly turned into an adult disease and it is now a stage many of us get to, and should, choose to thrive on and enjoy.

TIME magazine recently wrote an article on describing why this term recently appeared and flourished. The main reason was that young people are starting their lives much later than their parents, with the age of a first-time mother being "historically high" at age 26.   According to the article, the average first time homeowner is much older as well. Persons in their 20s and early 30s are using the term as a way to joke about their later transition into this phase of life.

But who is to say there has to be a norm on where we should be, at what time?  Who says we have to make decisions based on our ticking age clock?
Now I know, I know life is really short - I blinked and went from 6 to 26 years old. I can still remember vividly my first grade classroom with the blue reading loft with the wooden ladder and how to make SandArt.  But what I find is that CF does not allow many of us to have a normal timeline due to "interruptions" lets say. We have to adapt our life plans, sometimes more frequently than we would like, and still try to continue to grow and thrive through those challenges to continue on the journey. Similar to our young adults today who have had to adapt to economical changes (i.e. astronomical education costs, rising gas in New Jersey;) or family changes like taking care of a sick family member or supporting a spouse/family member in their quest to join the service, Persons Adulting with CF (PAW-CF, totally coining it) have to adapt due to the unexpected like an extended hospitalization, denial of meds through health insurance plans, or simply trying to balance CF factors with life factors.

So the joy that I find in everyday Adulting is the fact that I am, in reality, in full flesh, able to Adult. My Adulting, like the rest of the adulting community, is filled with a great number of shoots and ladders (90s game, anyone?) but I think where I am different is I do not feel as pressured by a time clock, because I am Adulting as best as I can, all the while content knowing I get to experience these amazing years in my life and hopefully many more years beyond.

Breathing & Beating,
Meghan


Reference: http://time.com/4361866/adulting-definition-meaning/

Impossible

“Impossible.”

     My favorite word of all time. Me and my family have heard this word, or forms of it, so many times from 1990 to 2016 and it has become my absolute term of choice. Why? BECAUSE IT IS SO MOTIVATING.

     Like many of my other 20-something CFers, our parents were given the news that we would not make it past middle school. We would be in the hospital every three months for inpatient stays and IV antibiotics. Our lives would be cut short, so get ready, prepare yourself, and absorb this as best you can. It would be “impossible” that we would make it to our prom, drive our first car, and take our first steps onto a college campus.

But here we are, many of us still fighting, and guess what else? We’re THRIVING.

Many of us went on to be doctors:

https://plus.google.com/+unchealthcare/posts/G2mXPwBXHdx

Moms:

http://www.womenshealthmag.com/health/cystic-fibrosis

http://mymommyhadadoublelungtransplant.blogspot.com

Role models for our Foundation:

https://www.childrensdmc.org/?id=1542&sid=1

http://www.lovetobreathe.com

http://www.gunnaresiason.com/author/gunnaresiason/

and what’s even better? We exceed the current average of life expectancy of 40 years old:

http://clubcysticfibrosis.com/articles/category/club-cf-50-plus

     When I started my journey as a physical therapy student, I started my first day of gross anatomy with such excitement, ambition, and hope. Within the first two weeks, however, I went from a happy little camper with her NorthFace backpack and scrubs to a crying hot mess. With only 8 weeks, an hour commute each way, and full 8a-5pm days in the lab, there was no way I was going to do this. I had failed almost every exam up until the halfway mark. I even cut back on treatments and was running sparingly (caution: don’t do this).  I broke down to my family and admitted that maybe this was a mistake, maybe I did not get into PT school the first round because I was not meant to be here. Maybe I could not balance this courseload with treatments and a full nights sleep. Maybe it was truly “impossible.”

In that moment that I said that word out loud, something just did not feel right. Besides the fact that I was failing, I also felt like I had lost that energy that burned inside my heart when I heard the word “impossible.” My hope was dwindling, my fire was dying, and I wanted it back. I needed it back. And I would get it back. Throughout the next few weeks, I found a way to somehow make it all work. Just made the ‘B’! I left in the middle of July knowing that I could conquer almost anything. Although there were definitely three more years of anxiety and tears ahead, I never looked at myself the same way again. I always moved forward with a consistency, knowing that when it came down to it, impossible is just a word, made up by somebody who never tried to find another route to conquer a problem. There is always an answer, we just have to fight to find it. With that fight comes hope and this intangible feeling is a concept no one and nothing can take away from you unless you allow it to.

     After studying since February 2016 and three years of our doctorate program, July 26, 2016 at 11pm I passed the National Physical Therapy Examination. The final piece of this journey reminds me that the word “impossible” is what started it all. Astounding how such a negative word can turn you into the most positive person. I have my family and my fellow CFers to thank for the fire inside my heart. Without them, I would not only be without a degree but I would also not be here today. As Elle Woods famously said:

     So, now that I have no studying to do, what will I do to fill the time? In less than a week, I will be riding 20 miles to conquer CF in the CF Cycle for Life. I am riding for a cure and cannot wait to be able to participate in an event that can help so many people.  Your support in any way is invaluable whether it be donations, prayers, or fingers crossed! By riding miles, we’re adding years to the lives we love, so lets keep it moving!

http://fightcf.cff.org/site/TR/Cycle/141_Delaware_Valley_Philadelphia?px=2853437&pg=personal&fr_id=5491

     Thank you all for your support so far. I am extremely fortunate to have the CF population and families in my corner when it comes to conquering this crazy disease—thank yous never seem like enough! Let’s keep breathing and beating towards a cure, one mile at a time!

B&B,

Meghan

Best Month of the Year!!!

PT school is almost over yay!! One more huge exam in July (the board exam) before I can return to posting. In the meantime, to all my Cysters and Fibros and loved ones, HAPPY CF AWARENESS MONTH, the best month of the year. Be back soon with more positivity than ever!

Breathing & Beating,
Meghan

Patience

'Patience is a virtue'. Patience helps us accept what we cannot change, and by the same token helps us accept what has to be changed.  The reason I am writing today about patience is because this guidebook rule has shaped many of my most important life choices.

Becoming a physical therapist in about a year from now, patience will be my middle name.  You have to take a great deal of time to not only improve your hands on experiences with people, but also take the time to communicate effectively with them. 

So why is this relevant to CF?

Patience is required of all persons who come into confrontation with CF—patients, dads, moms, sisters, aunts, uncles, brothers, best friends, physicians, supporters—everybody is required to be patient.  Patient with PFT and glucose results, patience with learning how to do a new nebulizer or G-tube treatment, patience with anxious family members/friends—we as a CF population require a little more time, a little more waiting to get the things we want or need. 

I chose the longer route to get to PT school because I knew with treatments, exercise, and sleep needed that I could not, and refused to, make myself struggle to speed up my graduate career. I took the 8 year route instead of the 6 year route, and it saved me a lot of headache health wise. 

I have also recently decided on being patient with my body.  CF is known as a progressively degenerative disease.  I battle with this occasionally, and I honestly get incredibly frustrated at having this disease and how it has scarred me physically. But I’ll always have this thought that my first doctor, Dan Schidlow, left with my mom 23 years ago. She was so worried that CF was progressive and that my life span would not be as long as everyone else’s.  She was devastated that my lung function would be worse than everyone else’s my age for the rest of my life. What he explained to her (paraphrasing) is that yes, CF is progressive, but we as a human race all age.  I would just age a tiny bit faster than the rest of the world.  Everyone’s lung function declines as we age—he explained that it was our job to make sure that we keep my lung function as close to normal as we can.  He did not say I wouldn’t make it past high school, that I’d be in the hospital every 3 months—he said I was simply a small, a miniscule amount different than the rest of the world.  Take that how you will—but that’s my glimmer of hope.

When I get frustrated with Achilles tendon pain from taking antibiotics, chest soreness and headaches, sinus and lung infections, coughing in public, I pull that thought out that my difference is not so huge, and I will be as close to normal as I want to be.  I take steps to make myself better, just like the rest of the world does when they get sick—I get extra sleep, eat healthy, try to laugh as much as I can (without coughing), and mentally restore myself. 

Recently, I tried something new based on this theory of patience. Over the past couple of weeks, I have had a “sinus infection”—meaning I dunno what it is but it involves lots of green stuff, coughing and blowing my nose.  I panicked as soon as I saw the signs—runny nose, coughing, chest soreness, mucus getting deeper in my chest—and immediately thought Antibiotic Time. But I also knew that I have a long life to live, and that antibiotics won’t always fix everything. I decided to try being ‘normal’—and surprisingly, it worked. Sleeping good, eating good, taking breaks when I need to, it all did the trick. What I found was a mental strength too—I had such an inner fire to destroy whatever this ‘thing’ was inside my chest that I fought through a 40 hour week of clinical work, pushing through with a determination I have not felt in a long time.  And guess what? Colors are white today, and I ran 4.5 miles.

Disclaimer: Please, please do not read this blog and think its okay to skip your antibiotics—ITS NOT. But for myself, I know my own body, and I know what I can handle and not handle.   Most people learn this in college when our immune system is so-soàso please, get to know your limits first.

I’ll leave you with one more thing I tell a lot of my older patients and that I will always believe—Age is Just a Number. Do not let the limits of what you are now stop you from breaking your boundaries tomorrow.  You want to break those boundaries? Be patient with your body, take care of yourself, and make your own choices.  As the CF population is beautifully aging, independence is an important lesson for us to learn.  No one, even your closest parent or friend, will understand how you truly feel physically.  It’s your job to speak up and communicate to the world what is going on in those organs of yours.  Age is just a Number, but with increasing age comes an increase in decisions about your health, and you ultimately have to make those decisions.

In conclusion, be patient with yourself.  You owe it to yourself to take time to understand what’s going on with you physically, mentally, emotionally so that you can make confident decisions about your health.  When you get frustrated and cannot figure something out, just remember you have about 99,999 other people worldwide who have equally hard if not harder decisions to make or bodily puzzles to solve.  We are all here with you, breath by breath.

Breathing & Beating,

Meghan

http://www.highroaders.com/wp-content/uploads/2014/09/Patience.gif

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

http://www.ballymenarunners.org/wp-content/uploads/2012/12/runsanta.jpg

http://www.theathletarian.com/wp-content/uploads/2012/12/elf.jpg

http://www.quote-coyote.com/album/small/Steve-Jobs-Quotes-Im-convinced-that-about-half-of-what-separates-the-successful-entrepreneurs-from-the-non-successful-ones-is-pure-perseverance.jpg