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
Thursday, May 12, 2016
Monday, June 22, 2015
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
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
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
https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-22tq8W3Je-9zHB6iCnqXSkTy0bfZNl3FERPx0G6iw3K0BOpUsLbQ1166JN98iCawU-gqeyTaA-Ic1eU7uPNnZGMMsmSM8lpIOvOHD4CY9PgfQR1zxoYamDDj2s5qdpG77Dp5yyX3Wh4G/s320/CFfundraiserBracelets.jpg
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
https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-22tq8W3Je-9zHB6iCnqXSkTy0bfZNl3FERPx0G6iw3K0BOpUsLbQ1166JN98iCawU-gqeyTaA-Ic1eU7uPNnZGMMsmSM8lpIOvOHD4CY9PgfQR1zxoYamDDj2s5qdpG77Dp5yyX3Wh4G/s320/CFfundraiserBracelets.jpg
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 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.
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
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