Running up the Hill

It was spring in DC - full on SPRING. It has yet to travel up the coast to Boston. I spent a few days in DC with the American Heart Association as part of Lobby Day - time to speak to members of Congress about the importance of funding research in the areas of heart disease and stroke research. For example, did you know that for all of the National Institutes of Health's budget only 4% goes towards heart research, and 1 % towards stroke, yet heart disease and stroke are the Nation's number 1 and 3 killer... interesting little fact.

So there we were - more than 300 people from 46 states across the country to discuss heart health and stroke awareness. It was an impressive sight to be sure: the color red could be seen from afar. I wonder whether they listened. The Hill is full of lobbiests. Every day, every hour, every minute people traipse up to Capitol Hill and pitch their stories. At times it seems that it takes more energy than it is worth. It is a steep climb up that hill - both literally and then it is figurative for those of us dealing with heart disease and stroke.

And then, in an instant it changes. The stories come out:

-A young girl born with a heart defect who subsequently suffered a stroke

-A woman who has suffered several strokes due to a rare brain disorder

-A woman who has had three open - heart surgeries for valve replacement, and knows that the valve will not outlive her, so she will need another (she is only in her 40s)

These are not stories of older white men collapsing on a golf course. These are the people who deal with heart disease and stroke every single day. I hope that our trip made the incline on the hill a little less steep for those of us who have to climb it everyday...


Stepping forwards & Backwards

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(image from www.zazzle.com)

 

So, I thought that I was going to be able to start "walking" the other day. NOPE. Michael, my PT (who is amazing), pulled out a calendar and pointed out that in fact 6 wks was the FOLLOWING day, and there was absolutely no way that weight bearing would commence a day early. I literally collapsed on the PT table (ok, part of the dramatic move was for effect, part was from pure exhaustion of holding myself up all day, but part was from utter desperation and the need to get off the crutches).  He explained that I would need to wait 5 more days.

Now, that being said, I was allowed to get on the bike and start using some resistance.  OK - I will take these little victories as they come, I thought to myself.  So I got to go on the bike. I started riding the bike and turned to Michael and remarked out fast I was going (it really felt fast) and then the bike's power shut off b/c I guess I was not going fast enough. 

I managed to hit about 40 rpm. Let me tell you - I felt freaking AMAZING (I might start training for the Tour de France). 

Minutes 1-3

"Come on Michael. I mean if am feeling really good, I can do this for like  20 min, right?"

(NO LILY, YOU CAN'T) 

Minutes 4-5

"Well can I do 10 minutes a few times a day... Oh wait, the machine shut off"

(LILY, try to keep pedaling at at least 40 rpm!)

Minutes 6-8

"Um, my heart rate is not really doing anything here..."

(YEAH, OK Lily, that is not really the point)

Minutes 9-10

"I think that 10 minutes is enough. I should ice after, right?"

Oh the joy of PT... I can't wait to see what happens tomorrow.

 


Staying Steady - part two

No one really tells you what you can do, but you are told what you cannot do.

You cannot put weight on your right leg for about 8 weeks.

You cannot run.  Ever. Again.

You cannot start any kind of weight bearing physical therapy until week six.

You cannot keep your brace unlocked while you sleep.

You cannot take your brace off unless you are doing physical therapy.

What about what I can do?  Well - do not worry about that now.  That is what I was told.

Well, that is not good enough for me.  I worry - I always worry about things, and when it comes to my health and well-being, I am going to worry.

I worry about making sure that I stretch my hip flexors and IT band.  I worry that I won't get enough exercise, and that all of my due diligence what I have worked on for years will completely dissipate.  I worry that I am going to completely go out of my mind sitting around all day long.  

There are small victories that happen each and every day, and that is what I have learned to hold on to - along with those victories are set backs as well.  An accidental slip meant weight shifted to my right leg.  Almost falling down a flight of stairs meant I placed weight on my right foot to balance.  Slowly, slowly, and things will hopefully fall (no pun intended) into place...

 


Staying Steady - part one

Rain, snow, ice, sleet, puddles, steps, sidewalks, cobblestones.  These are all things that have put an undeniable fear in me.  Welcome to life on crutches.  And it gets better - I am on crutches and not able to put any weight on my right leg for fear of ruining the intricate surgery my doctor recently performed to regrow the cartilage in my knee.

This is not my first adventure on these stilt-like walking apparatuses.  I have been on them several times before for this same knee, but my previous adventures where no where near as daring as this one.  Non-weight bearing for eight weeks is a challenge, and even more so for someone who tends to be very physically active.  I am used to waking up around 4:45am and hitting the gym to teach bootcamp classes and workout with my trainer.  That will not be happening for a while...That being said, I do not see my situation as an excuse to sit on my ass, feel sorry for myself, and let things go.

I have learned that simply getting around is a workout in itself.  Walking (hopping) around brings up my heart rate to almost the same level as power walking on an incline, and holding up my body on crutches throughout the day is a serious upper body exercise.  Hands, forearms, shoulders, and triceps cry out to me at the end of everyday in ways that have never happened before.  They all contract to steady my body as I move forward, sideways, and backwards in a delicate and slow balancing act just so that my right leg will not make any contact with the floor at any point in time.  These muscles contract even more in anticipation of stairs or ice outside, and exhaustion sets in once the danger passes.

Physical therapy, physical activity, and physical exhaustion are regular parts of my daily routine, however perhaps the most important in understanding that part of my leg's healing process is rest. Simple rest.  The pure act of healing is to be underestimate for the weeks to come.


Microfracture Surgery

It is not the first time I have had surgery, and it is certainly not the first time that I have had knee surgery (the fourth to be exact).  However, knee surgery is in a category by itself.  In many ways it is one of the most difficult kinds of surgeries that I know of.  It is more difficult than heart surgery.  Yes, you read that correctly.  Before you start calling me crazy, think about it a little bit.  First, I am talking about my own circumstances, as that is all I know.  When I had my open heart surgery, I (like most heart patients) was told to get up and walk around.  There is a fear that if you lie flat for too long you are at a greater risk for pneumonia.  Knee surgery?  Forget it.  I was told and am presently being told to stay off my fee, or more specifically, my foot.  You see for the next 6 wks I cannot not any weight on my right leg.  No weight AT ALL.  People have had this surgery done - NBA players Jason Kidd and Chris Webber and Olympic Skier Bode Miller.

I challenge you to do this for 24 hrs.  Take a shower and put no weight on one of your legs.  Try walking around on crutches and carrying a cup of coffee at the same time.  Well, let's just say it doesn't really work.  Now with heart surgery, I could not really carry heavy things, but I could at least bring a cup of coffee from the kitchen to the living room.

So back to the knee... microfracture surgery is a procedure where tiny holes are drilled into the bone closest to where cartilage is missing from the knee.  The goal is for the bone marrow to drain out of the hole and form a blood clot.  This clot along with your own stem cells is supposed to create new cartilage. Yes, I said your OWN STEM CELLS PEOPLE so do not go running around crazy bent out of shape about the stem cell thing - it is an amazing scientific achievement developed by Dr. Richard Steadman who is a knee surgeon in the Southwest. 

So after 6 weeks of not being able to put any weight on my leg, things should be sorted out (we hope...) However it will be a while before I know anything, months in fact.  5 weeks to go, and I am sure that there will be ups and downs. The downs happen when I (or the crutches slip) and fear runs through my entire body and I start to wonder if I have just messed everything up.  Or when I am lying still with the hip to ankle Bledsoe brace on my leg and I turn on my side and hear a small crunch in my knee and start to wonder if the clot is dissolving.  It is not a stress-free recovery.  We will see happens several months from now.


Frequent Patient Card

I should be used to it by now... the waiting, the anticipation, the news, the no news, the anxiety, and perhaps most prominent of all, the frustration.  Yes, after all of my numerous visits, countless tests, blood draws, scans, xrays, MRIs, I still hold out hope that the next time it will be different.  But more often than not, I am disappointed.

I am a repeat customer at my hospital.  If any one of my doctors spent time reading over my chart, they would see that I am an excellent client - good for them, bad for me.  Three knee surgeries, stroke, open-heart surgery, pneumonia, all within in the past 6 years.  Pretty good stuff, right, and for someone who has not even reached the age of 40.  And lucky me, I managed to do something to my knee again, two days ago.

Not just a little something, but something so painful that I am unable to put weight down on my leg. So painful that it keeps me up at night, and so painful that just looking at stairs causes panic.  You might say, well I am a klutz or I need to take better care of myself.  That is the irony of it all - low blood pressure, no smoking, and a fitness instructor, so stuff like this should just not happen.

But let's get back to the doctors, and my frequent "shopping" card at my hospital.  It takes very little for a doctor to look at my chart and see that when I am calling and asking a question, I am not trying to be difficult, but simply looking for a response.  I do not think that it is too much to ask that I receive a response in 24 hours.  So when I called my orthopedic doctor a while back and left a message that I was in a considerable amount of pain and it would be helpful to have the results, I was less than thrilled when I had not heard anything by the next day.  I called back almost 48 hours later and was told that in order to find out my MRI results I would have to speak to radiology, and my orthopedic doctor would be given another message but that he was really busy (yes, I am aware of this, the first time I met with him I waited in the office for 2 1/2 hours...)  Radiology told me they would not give me the results as my doctor needed to give them to me, and so I was being bounced around like a ping-pong ball.  Oh, as far as my pain goes, they told me to increase the Advil and I could come in for a cortisone shot.  Um, no thanks.  I have had one of those (2 in fact) and they don't work.  Neither, for that matter, does the Advil... And I informed them that I really looked forward to coming in and waiting to be seen.  It just rocks.

I suddenly was reminded of 2006 and the preparation for my heart surgery.  I was not given direct answers, and often the answer that most people agreed upon was a run around response.  So, I consider myself an "expert" in the medical system, and I am continually disappointed.  There should be some kind of points card for frequent visitors (patients) at hospitals.  You know, those of us who unfortunately are more familiar with some aspects of the medical care system than our own doctors are.

I know that my circumstances are by no means unique.  Sadly, my situation (the lack of response, apathy, and wait time) probably happens to most people.  Why is it that when a doctor treats patient with respect that it is cause for celebration?  Or when a patient is seen within 5-10 minutes of the scheduled appointment it is considered "on time"?  Yes, there are many other variables at play here, and I am well aware of these (patients can be late too etc), but as a frequent patient I think that expectations and outcomes should be higher. 


Breathe, and bring your hands to your heart...

Yoga.  I am sure that that word conjures up lots of different images for people everywhere.  I still remember the first class I ever took.  It was in a hot room (about 100F), I forgot a towel, sweat dripped from every pore on my body onto an old grey sweatshirt and soaked it thru and thru.  I must have stopped 10 - 15 times to look at the clock and wonder when the hell the class was going to be over, because 90 minutes seemed like 90 minutes too long, and I could not stop my mind from thinking about everything and anything.  It was not zen, it was not peaceful, and it was definitely not something that I wanted to rush back into anytime soon.  But when I left the studio, I felt lighter (probably from the 5lbs of water that I shed), and my mind felt clearer (quite possibly from the thinking that occurred and all the thoughts that sweat out of my pores).  In any event, I figured that I needed to try it again, because I was sore the next day.  Really sore, which in my mind meant that it did something to me that my other fitness activity was not doing.  So on and off for several years I would take a class.  I listened to the instructors, each with their own philosophy on life about how each one of us should go about our own lives.  I would listen, but not pay too much attention to what each particular move really meant.  Nor would I pay much attention to the intentions of yoga.


After my stroke and heart surgery, one particular phrase took on an entirely new meaning..."Bring your hands to your heart..." Yes, every time the heart is mentioned in yoga, my mind now focuses intently on my heart.  My whole heart.  My heart that is mended, and no longer broken.  And now it is my heart that truly guides me throughout each yoga practice.  I have come to really like yoga, and when I leave class, the light clean feeling I have is because I have been able to clear my mind for 60-90 minutes (for the most part...) and really focus on thinking about nothing (except that woman three rows in front of me who can do crow, and I can't and it really pisses me off...but that is besides the point, because I am almost there).  And truth be told, yoga is a great compliment to my running, strength training and bootcamp.  It really is all about balance - which you need a lot of in yoga. 

And speaking of balance, when you are standing there, on your mat, it is important that you are comfortable when balancing.  The foundation can often come down to your comfort level (or it can for me anyway). SO now, more than ever, I have it all figured out.  I recently purchased a brand new yoga mat that will bring everything into focus - my energy, my balance, and I am pretty convinced that I will be able to master crow pose as well.

On Sunday, while perusing the aisles at SOWA, I stopped by the Lotus Pad booth to check out the mats.  I have followed her on Twitter, and checked out the website, but it is hard to know what you are buying sometimes unless you really get to see it... and I did.  These mats rocks.  They are soft, colorful, light, and the owner rocks.  The mats are reversible, so depending on your mood, you can change the color.  Kate, the owner, is fantastic, and you should really check out her blog too!  Check these mats out...you will be happy you did!
Mats2   Lotus
Kate - owner of Lotus Pad Yoga Mats

Learning to Life - lessons from a stroke

Last week I was asked to give a speech at a Bank of America Event.  After several written versions, I had the final one in hand, and gave the speech on a cool rainy afternoon.  I thought that it would be perfect for a blog post.  So here it is in it entirety (edited by Grammar Glamour)

I tend to be one of those people where more is more – the more that I have going on, the more productive I tend to be.  When there is a lull in any part of my life, all of the pieces including work, social and family are somehow affected.  I find that I bring more to each aspect when they are all in motion.  Over the course of any given day, I rush from one meeting to the next, or often in my case, one job to the next, juggling my coffee, my gym bag, my purse, and somehow making it to my final destination before feeling like I am going to collapse.  I am sure that many of you can relate to this multi-tasking induced exhaustion.

It is a challenge to go through everyday like this, and there are days when the only things that feel balanced are the two bags hanging off my arms as I jet off to work each morning.  Still, I thrive off of the energy and simply readjust the priorities if I ever feel that I’m truly losing my balance.  This wasn’t always the case and I’m thankful I now have this perspective.  Several years ago, dire circumstances forced me to reconsider my own priorities, and think long and hard about what really matters.

On July 21, 2006 – close to three years ago – I was navigating those balanced two bags back and forth between two jobs.  Former colleagues at the Harvard Business School asked me if I could come over and teach a fitness class during lunch.  Fitness was something that I did in a previous life, and I figured that I could make this happen.  I’d teach the noon class, grab a quick bite with my boyfriend after class, and then hurry back to work.  It would be a long lunch break with the fitness class included, but it was summer and a Friday afternoon. 

On our way to lunch following the class, I started to feel ill.  I stumbled, thought that I said a few words about not feeling well, and grabbed some bushes to stop myself from falling.  In a matter of seconds, I went from laughing with Hector, my boyfriend, and Erika, a long time friend of mine, to being unable to communicate at all or think clearly.  Imagine someone turned a switch in your head that stopped you from speaking.  Gone.  Off.  Finished.  That is what happened to me – and that is how I can best describe what my stroke felt like.  As surreal and confusing as it was, I remember everything form that day. 

Hector asked me his name, my name, what day it was.  Nothing came out of my mouth, as I could not respond.  Instead, I just watched him, trying to figure out what to do with the situation.  He drove me to the hospital and after I was admitted, the doctors administered a series of tests.  Almost an hour from the initial onset of the stroke, I received the news… I had a 1.5 centimeter blood clot in my head.  It stopped blood from flowing to areas of my temporal lobe, which is associated with speech.  After four days in the hospital, a cardiologist found an atrial septal defect (or an ASD), which is a hole between the left and right atria in the heart – which had been there since birth.  He concluded that this was most likely the cause of the stroke.  And several hours later I was sent home with another title to add to my list of roles … a stroke patient.  Several months later, I underwent open-heart surgery to close the hole in my heart that caused the stroke.

I scheduled the surgery during a quiet time at work.  I knew that work would be less demanding in December and I would have more time to focus on getting well following the surgery, instead of worrying about what was occurring in the office.  For four months, I busied myself planning every second of each day.  I focused on my work, my doctors’ appointments, my fitness…everything and anything that I could to avoid coming to terms with the sheer reality of the looming open heart surgery that would take me out of the day-to-day routine that I had become so accustomed to.  In my typical more is more method, I became completely and utterly frenzied during those months.

The frenzy suddenly stopped on December 12, 2006 for the surgery – and then switched to neutral for the two months that followed.  I really had no choice but to slow down my pace.  No, nothing was wrong with my heart as far as stress went, but still, I underwent open-heart surgery, and I needed rest.  I am not sure if you have ever had the luxury of taking 2 months away from your life as you know it… but it forced me to refocus and regroup my priorities.  Two months away from work, away from the daily routine of early morning fitness classes, ignoring e-mail messages at 6:30 in the morning, not thinking about what I was going to cook for dinner or who I needed to make plans with felt incredibly liberating.  While these things are important, I came to realize that life went on without immediately attending to these items that had always seemed so pressing.  In fact, life improved by letting some of these things slide.  The emails could wait until later in the day, or even tomorrow.  If I didn’t have time to plan dinner, it was easy enough to get take out or have a bowl of cereal instead of stressing myself out.  Even work went on without my constant attention, proving that while I took pride in my job, I could still do it well without always putting it first. Putting myself and Hector first freed me up to approach everything else with a calmer, happier attitude.  This realization enabled me to better balance my personal and professional life once I was healthy enough to pick up the pace.  While it didn’t happen overnight, it did happen, but unfortunately, it took a stroke and open-heart surgery for me to come to this realization.

Following the stroke and surgery, many of my friends and colleagues remarked on the change in my attitude and demeanor, and the shift in my priorities – people started to describe me as more direct, more calm, and more at ease with life in general.  Since I had experienced first hand that life was short, I learned to drop the baggage that often gets picked up as you go on living day to day.  Time is short, and each minute is important.  I needed to make the most of each one and capitalize on the time that I had.

Having a stroke at any age is devastating.  Having a stroke at 33 with no risk factors – except for that problematic hole – was mind numbing.  In fact, to this day, I am not sure that I have fully accepted what happened, let alone the severity of what could have happened, on that July day in 2006.  That aside, I have gained perspective on life and learned about prioritizing, and setting realistic attainable goals.

You might not have time to do everything, and you might not have time to do everything well.  What is most important is that YOU become a priority in your own life.  Of course, work is a priority and it is something that gives people a sense of self and worth.  Speaking for myself, I love what I do.  Years ago, I promised myself that the second I am no longer satisfied with my work, I will start to explore other options.  While it might seem terribly cliché, life is short and you really do not know what is going to happen or when it might happen to you.  When I was in the hospital following my stroke, and certainly in the months, weeks, and days leading up to my open heart surgery, I found myself questioning some of the decisions that I had made in my life, wondering if they were the right ones. I happily discovered that I did not have any regrets, and I am fortunate enough to have learned to live in the present and appreciate what I have at such a young age.  So much of living is about the balance of work, family and friends.  I think that we all have those days when work takes up more time than we might like, or perhaps family or friends are taking up all of the time, and we know in the back of our minds that we need to get back to work – but it is all about give and take.  You need to be able to find and make time for yourself, so that the other critical elements in your life will fall into place without any one part, especially your health, seriously suffering.

I am obviously going to advocate for a healthy lifestyle – it is something that I led before the stroke and surgery, and something that is even more of a priority in my life now.  I realized that even as healthy as I was, I could not control certain factors of my life – such as a congenital heart defect.  You can take this same story and relate it to work, finances and / or family.  There are just so many things that are beyond your control, and you truly have no way of knowing what is going to happen 10 minutes from now, 10 hours from now, or 10 days from now, let alone 10 years from now.  But you can ensure that whatever does end up happening, you are prepared – both mentally and physically.

What I mean is that it is important for you to have other outlets in your life that allow you to regroup.  For me, exercise and overall fitness was and is my sanity.  It takes me out of the daily grind and forces me to do something for me.  I do not bring a BlackBerry with me, because I am not exercising at 6 am for anyone but myself – I will take my phone when I go running, but only for safety purposes due to my stroke.

It is truly about balance.  I know that I continue to come back to that term – but now, more than ever, as we’re bombarded by emails on our laptops and Blackberrys, and surrounded by bleak news about the current economic situation and global events, it is entirely too easy to become consumed in the day to day and simply forget about yourself.  It is not worth it.  Trust me.  When I was lying on the gurney being wheeled off to my surgery, I was not thinking about the e-mails that I sent the days before, the change in my job description that I worked for several years to achieve, or even the hesitation I felt as I left the office knowing that I would not be back for two months.  No.  I thought about my parents, Hector, my grandmother, my sister, my nephews, and how lucky I was to have them all with me.  I seriously had planned for the worst-case scenario – which was not waking up.  But, no matter what the outcome, somehow I knew that everything would be all right because I took this extra time before my surgery to be with my family.

At the end of the day, it is not about who can respond to an email the fastest or stay at the office the longest.  In fact, I know many people who work long hours, but are far less productive than those who come in, do their work, leave around 6 pm and go home to be with their friends, their family, or simply their yoga instructor.  Let me tell you, the latter group is definitely the happiest and no doubt the healthiest.

Trust your instincts on this.  Trust yourself, put yourself first, and learn to live YOUR life and live it well.  There’s no room for regrets when you only have one chance to get it right.

   

-Lily Underwood Burns, June 30, 2009 Bank of America LEAD Speech


What do you choose?

It is raining...again.  This weather really does not inspire me to want to much of anything except go back underneath my covers, pull out a book, and start reading until I drift off into some kind of dream like state.  But that is certainly not my reality (at least during the work week).  Instead, my reality includes a rather active lifestyle that involves a job that has me working 10 hrs a day, several blogs on the side, a passion for cooking, and oh yeah, I am also a fitness instructor!

Most days I choose to exercise.  I do it for many reasons aside from the fact that it is a job.  However, I would be lying to you if I just wrote that it had to do with the health benefits associated with being physically active, even though that is one of the reasons I choose to exercise.  I would also be lying to you if I told you that the primary reason for my exercising was because according to the American Heart Association, 80% of cardiac events in women could be prevented if women made the RIGHT decisions in their lives, such as choosing to exercise.  These reasons are good enough for almost anyone to make the decision to change their lives and become more physically active, however after having been exercising regularly for more than half of my life, exercise is part of my life.  It is non-negotiable and happens at least 5 days / week for about 60-90 minutes each time.

Yes, there are days that I do not want to put myself through the motions of my feet pounding around Boston's pavement as I run 5 miles, or go through another set of front shoulder raises with the 8 lb weights (does anyone have some 3 lb weights in the area???), but I do it.  I might be sore the next day, my body might tell me to do yoga one day instead of running, and I will listen to that.  However, I am at the point where I feel far worse if I do not exercise versus if I do exercise.  Upon finishing my workout I feel healthy, light, clean, energetic, calm, and happy.  I take pride in myself.  Exercise and staying physically fit and active is one of those reasons. 

There are so many excuses people give so that they do not have to take that first step - none of them work for me.  1 back surgery, 3 knee operations, 1 stroke, 1 heart surgery - exercise was not the cause for any of these tragic events, but it was what helped me to recover from each and everyone of the events.  Start small, and think big.  Only you can choose to make it happen.  Your health and heart will thank you.


Work Your Heart Out

Last week I started posting about the American Heart Association's Go Red for Women: Better U Movement.  This 12-week program is a way to take steps - one at a time - to understand and learn about the importance of heart health.  The steps are literal, as they should be when one is talking about heart health.  You can make over your heart, make it stronger, make it work more efficiently, and make yourself healthier.  You might ask me how I know this information, and my first answer would be that I am a fitness instructor.  However, the more important and even relevant response is that I suffered a stroke in July 2006 and underwent open heart surgery several months later.  Because my heart had been worked, running up stadium stairs, the 1996 Chicago Marathon, hundreds of step aerobic classes, laps around tracks, hours on a treadmill, and years perfecting squats and bicep curls, I recovered from the stroke and from the heart surgery and found myself back at the gym, back to getting my heart beating like it once was, less than two weeks after the stroke and less than two months after the heart surgery*.

Yes, years of working my heart actually saved it.  Every single day that I decided to exercise and to work out, I made a decision to save myself.  Yes, the stroke happened after I taught a step aerobics class (irony at its best...) but due to previous training, and a conscious decision to take care of myself, I emerged healthier that I was before, stronger than I was before, and more aware of what I needed to do to ensure that I could forever choose to make a difference in my life and the lives of others.


*While this time-frame worked for me, it might not be the most ideal time frame for all stroke / heart surgery patients.  It is always best to check with your doctor before starting / resuming any kind of exercise program.